Talents Poetry Creative

Talents, Poetry, & Creative Writing

The Early Years of The Maap (p. 63-64) I recently received a letter from a man named David Miedzianik who lives in England. Mr. Miedzianik has writtten a twenty page poem called “I hope Some Lass Will Want Me After Reading All This”. He has also written a book called My Autobiography. Both the poem and the book are very interesting and worth reading. In both of these works, Mr. Meidzianik draws from his experiences as a person with autism trying to get along in the world. The poem eloquently expresses the loneliness that people with autism experience at varying times in their lives. If you wish to order the book and the poem, send five pounds sterling (do not send U.S. dollars) to: Child Development Research Unit, University of Nottingham, University Park, Nottingham, England NG72RD. Here is a copy of one of four songs that Mr. Meidzianik wrote and sent to me in the hopes that I would print one or two of them. He is hoping that someone will be able to put music to them. Then he’d like to make a benefit record for autism. If you want to contact him about his poem, book or songs, write to him in care of the University of Nottingham address. I will print the other songs he sent in subsequent issues of The Maap. Tom’s Temper Tom had a temper when he was a kid. His temper affected everything he did. He never could keep his anger hid. His temper never left him no matter what he

did.

Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly he hasn’t a clue. Tom took tablets and he wore rabbit’s feet. This didn’t take the heat our of his mind. Tom didn’t know what it was like to be kind. To other’s emotions he was blind. Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly he hasn’t a clue. Tom would fall out with people in shops. He would fall out with cripples that hop. He could never see anyone’s point of view. He had his own problems on which to chew.

Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly he hasn’t a clue. Now Tom’s an angry young man. His life doesn’t run smoothly and live to plan. Half the town he’s now banned Everyone he meets fails to understand. Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly I haven’t a clue. People can’t understand his ways. He’s spend many days wandering around town on his own. He calls his parents on the phone. He feels a fear in him like he want to turn to stone. Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly I haven’t a clue. Tom has no job and people think he’s odd. He picks up another cod and chips for dinner in town. People are sick of seeing him hang around. The fish and chips today are cooked too brown. Tom’s temper isn’t easing and he’s not pleasing And he isn’t a pleasure to know. But as he grows older His anger doesn’t grow colder and why he can’t Think more calmly I haven’t a clue. David C. Miedzianik ******* The Early Years of The Maap (p. 71) Here’s another wonderful poem/song by David C. Miedzanik from England. Adam and Eve Adam and Eve were brother and sister. They lived with their parents in a big house.

Adam wasn’t very well in his mind and Eve was unkind. When they both were little they sat under the apple tree. Under the apple tree in their garden they both played. Although they moved to the house when it was a rainy day. Eve couldn’t understand Adam’s mind. That’s why she was so unkind. Now Adam and Ever are both grown up. His parents have told Adam not to give up. Adam sits at home then wanders the streets. He has no job because he’s odd. At home his parents try to get him to do jobs around the house. But Adam just sits there as quiet as a mouse. Eve couldn’t understand Adam’s mind. That’s why she was so unkind. Adam told Eve that George Bush was Kate Bush’s dad. He hoped they didn’t make this singer’s father president. As he watched all the election programmes on TV. He also watched Mrs. Thatcher having tea. He watched the news about then times a day. The news never had anything much good to say. Eve couldn’t understand Adam’s mind That’s why she was so unkind. Eve had job at a local store room. All Adam did was to think about doom. He used to ask his sister for her job. She used to say “you’re too odd to do a job.” One day his sister got married and Adam felt on his own. Now she never rings him on the phone. Eve couldn’t understand Adam’s mind. That’s why she was so unkind. The doctors give Adam tablets to make him see life better. As he sits under the old apple tree they both sat under. Now Adam can hear something in the distance it is thunder. Or is it just his mind playing tricks. Fantasy and reality have now come to mix. Adam is once again in a fix. Eve couldn’t understand Adam’s mind. That’s why she was so unkind.

***** The Early Years of The Maap (p. 76-77) I built a bridge out of nowhere, across nothingness and wondered if there would be something on the other side. I built a bridge

out of fog, across darkness and hoped that there would be light on the other side. I built a bridge out of despair, across oblivion and knew that there would be strength on the other side. I built a bridge out of hell, across terror and it was a good bridge, a strong bridge, a beautiful bridge. It was a bridge I built myself, with only my hands for tools, my obstinacy for supports, and my faith for spans, and my blood for rivets. I built a bridge, and crossed it. but there was no one there to meet me on the other side. Jim Sinclair

******* The Early Years of The Maap (p. 78) Here is a poem that I shared with the audience in North Carolina. Several parents asked for reprints which I did not have available at that time. This was written just after the first time that Beth ever looked at me, when she was 5 years old. TO BETH with love from your mother As I said all the things I say usually, A miracle occurred I thought never would be. As you lay there tonight, as though by divine decree, You really listened, you looked up and you looked at me! If I live a hundred years, I shall never, never see Anything as beautiful as when you looked at me. A million of my dreams never will be. One dream came true—you looked at me!

******* The Early Years of The Maap (p. 79-80) Here is another poem from David C. Meidzianik: Looking About Town to Find A Lover Most days I go down town Most days I go around the shops Most days I stop my friends in the street.

Every day I fail to meet Mrs. Right. My nights are boring watching TV. I wish some lovely girl would go out

with me.

The TV news tells me about the state of the World. As I curl my feet around a stool. No one will go out with me because they think I’m a fool. I know that sometimes I don’t act very cool. My nights are boring watching TV. I wish some lovely girl would go out with me. I go down town wanting to meet the woman of my dreams. Well life’s not like that it seems. Things don’t happen the way they happen on TV. It seems a life of loneliness was meant for me. My nights are boring watching TV. I wish some lovely girl would go out with me. I wrote a letter to the radio station the other day. I wrote it to one of the station’s DJ’s. I asked this DJ to read my lonely hearts letter out. I hope to find someone whose love I don’t doubt. My nights are boring watching TV. I wish some lovely girl would go out with me. I never got a letter from any of the listeners. So I’m still going down town looking for her. I hope she’ll come into my life soon. Or maybe her radio was out of tune. My nights are boring watching TV. I wish some lovely girl would go out with me. I never got on with girls even at school. I was too busy acting the fool in front of my mates. Ever since school my mind’s been in more or less the same state. It’s been years and years since I’ve had a date. My nights are boring watching TV. I wish some lovely girl would go out with me. I sometimes sit outside the bus station in town. I watch the girls walk down the street into the bus station. They always pass me by without hesitation. I’m fast losing faith with the girls of this nation. The girls talk to the other guys in town as they sit down, But they don’t seem to like seeing me around. David C. Meidzianik, 1988

******* The Early Years of The Maap (p. 86) Here is another poem by David C. Miedzianik, a young man who has autism. David lives in England.

Bob Bently’s Bottle When Bob Bently was a small kid he hid his bottle. He hid this bottle at the bottom of the garden. Every day he would go and ask the bottle for pardon. Pardon for his boyish pranks around the house. The bottle became a god to Bob Bently. He talked to this bottle and told it no lies. He shared with the bottle all his lows and highs. As he became older the bottle was still in the garden. He used to shout at cats that sniffed the bottle. Even though this bottle had nothing inside only air. He even talked to the bottle about what clothes to wear. The bottle became a god to Bob Bently. He talked to this bottle and told it no lies. He shared with the bottle all his lows and highs. Bob Bently was now a man and the world he didn’t understand. Although this didn’t matter when the empty bottle was at hand. Sometimes Bob would blame the bottle when things didn’t go as planned. By now he’d seen many doctors about his life and he had no wife. The bottle became like a god to Bob Bently. He talked to this bottle and told it no lies. He shared with this bottle all his lows and highs. He never told anyone about his bottle that meant so much to him. Until the day he couldn’t find it at the bottom of the garden. He then asked his mother what she’d done with the bottle. She asked his pardon because she’d thrown it away tidying the garden. The bottle became like a god to Bob Bently. He talked to this bottle and told it no lies. He shared with this bottle all his lows and highs. Bob went to look in the bin but the bin men had been. Then he went to look on the council tip for a bit. He couldn’t find his bottle there and the bin men didn’t care. Now he doesn’t care for anything too and as for life he hasn’t a clue. The bottle became like a god to Bob Bently. He talked to this bottle and told it no lies. He shared with this bottle all his lows and highs. Now Bob just sits and looks into the distance. He can see nothing but gloom on the horizon.

******* The Early Years of The Maap (p. 90-91) Below is another wonderful poem by David Miedzianik. Those Daft Days

Back in 1980 I threw some unused blank cassettes in a pond. I suppose they’ll still be rotting in this pond until today. The metal in this tape will have wasted away. The chemicals on these tapes may have made the plants grow in this pond. I now know that those daft days are now gone. Those were the days when my head had gone wrong. In those days I used to spend a lot on blank cassettes. In fact I still spend a lot on blank cassettes to this day. I had to have something to record the words I say. I still have my old recordings till this day. I now know that those daft days are now gone. Those were the days when my head had gone wrong. Maybe a lily has grown over these tapes. The tapes were put in the pond when my mind was full of hate. I used to be an angry young man. In those days nothing ever went to plan. I now know that those daft days are now gone. Those were the days when my head had gone wrong. 1980 was a very strange year. It was a year when I used to go around asking everyone the time. My mind felt like it was in a time warp. In those days I used to drink a pint of beer and not a half. I now know that those daft days are now gone. Those were the days when my head had gone wrong. My mum says I was a fool with my money then. In fact I’m still not very good with money until this day. Well who cares if I spent my money silly then. In fact I’ve been wasting money since I’ve been 10. I now know that those daft days are now gone. Those were the days when my head had gone wrong. I now look at a photo of myself back in 1980. I had a long frizzy beard then and long blonde hair. Those were the days when I simply didn’t care. These days I care more about things although trouble this brings. I now know that those daft days are now gone. Those were the days when my head had gone wrong. They say that time teaches people lessons about life. Time also helps tapes to decompose in ponds. Chemicals from tapes are then drunk by swans. I would have been better throwing some bread crumbs to the marine life. I now know that those daft days are now gone. Those were the days when my head had gone wrong.

David C. Miedzianik

****** The Early Years of The Maap (p. 97-98) Moonbase 2022 by David C. Miedzianik The year is 2022 and base X3 is one of the few bases on the Moon. The people on the base look at the Earth and feel gloom. All the flowers and trees here are in a dome. There are no fields for people to roam. They all have the Moonbase blues. They’re all up there because this is what they choose. The wages are high for the workers on the base. They pay more than they do on Earth for working out in space. On base X3 they make micro chips for TV’s. They also sell some micro chips to the BBC. All the people out here are very very skilled. To live out in space takes a very strong will. They all have the Moonbase blues. They’re all up there because this is what they choose. Sometimes to bases radio goes dead. Sometimes people get ill and have to lay in bed. Life is made hard by next to no gravity. People can’t work out here for more than 6 months at a time. They all have the Moonbase blues. They’re all up there because this is what they choose. Some of the Moonbases make medical drugs. One Moonbase even makes warm rugs. It was President Bush’s idea that we had to trust space. Now Britain is finding it hard to keep up with the space race. All Britain can do is make spare parts for space craft. Although still a lot say going into space is daft. Some people have the spacecraft blues. Space is not what everyone want to choose. Now people are saying there’s too many people on the Earth. A lot say these people will have to go out in space. Or the Earth won’t be able to stand many more births. Although space bases are now beginning to show their worth. Some people have got the spacerace blues. Space is not what everyone wants to choose. So how will all this end if end it does.

In another 100 years will it be space they trust. Mind you they still have a stuffed dummy of President Bush. In the space dome where the trees and flowers are. In another 100 years, will he be such a star? Maybe then they’ll have took him down and built a drinks bar. Some people have got the spacerace blues. Space is not what everyone wants to choose.

***** The Early Years of The Maap (p. 102-103) Obsession by David C. Miedzianik Some people say that the eye works as fast as a TV camera. So because of this there’s no need to check the plugs 10 times or so. I have got a fear that the plugs aren’t off and lights will start to glow. Maybe then some alien sounds will then come out of the stereo. Strange things might happen if the plugs are left on. Every night it’s a long hard job checking plugs and windows and things. If the eye is like a TV camera then this obsession isn’t logical. One look would be fast enough for the eye to take it all in. This obsession is making me as good as the people in the loony bin. I then go to check there are still coins in the phone money tin. After about 5 looks I give up. 5 is the number of sides of the Pentagon. Checking up 5 times is better than checking up once. Oh I feel the need to check up yet again coming on strong. I’m now going to check the TV’s not gone. I sometimes check the windows 3 times. rd

They say that 3 time lucky Then I go and check the cookery. It looks like this strange obsession is stuck with me. I’m now going to check the back door key. I know that 7 times is a good number of times to check the door. There are 7 colours in a rainbow. Yes 7 is a good number of times to check things. A slowing down of life this obsession brings. I now go and check my rings. Yes it takes longer to do things when you have to check things so much. Although if I didn’t do this then I’d give up on jobs. Or I’d be afraid the windows would be opened and we’d all be robbed. Then I open the window and throw the cat the left overs of a cod.

I then go and check the door knob. In fact all the numbers are lucky numbers when it comes to checking. I sometimes like checking things up 9 times. 9 is the number of our house. Checking the plugs are off 9 times makes my mind as quiet as a mouse. I then go to check the cats not about. I very rarely slip up with checking things are safe and secure at night. If I check things they’ll stay safe until daylight. The odd times that things don’t get checked is when I leave it to my mum. She finds checking windows and things not so much fun. She finds the way I check things very rum. ******* Thoughts About Thoughts by David C. Miedzianik When I was a kid they used to say the brain was like a huge telephone exchange. Now they say the brain is like a big computer. Maybe in another 30 years they’ll say the brain is like a space craft or something. All this as thoughts sing through the mind . I now think thoughts about thoughts. Thoughts are changed by what we’re taught. Now I think thoughts about peace and war. Nations try to even their scores. Every nation wants to get all it can. Although sometimes things don’t go to plan. They do everything at the expense of the other man. Other nations get the blues about utopia. I now think thoughts about thoughts. Thoughts are changed by what we’re taught. I now think thoughts about the ordinary man. The man that can’t understand a lot of nations mostly. As life for the underdog gets as hot as a roaster. You can find a hot dog in Europe and America and an Underdog in Africa and India and a few other places too. I now think thoughts about thoughts. Thoughts are changed by what we’re taught. Now I look out of my window and the sky looks blue once again. I’m not chewing my breakfast once again. World leaders have a lot to chew over these days. Although all I’m bothered about is having my corn flakes each and every day. Without these every morning I’d start to waste away. I now think thoughts about thoughts. Thoughts are changed by what we’re taught.

I now turn on the radio and listen. The radio tells me about the World and what missing for some. This morning 5 people have been shot by a gun. Life for them now won’t be much fun. I can’t tell if things will work out alright For the World in the long run. I now think thoughts about thoughts. Thoughts are changed by what we’re taught.

******* The Early Years of The Maap (p. 105-106) Dear Parents, More Able Autistic People? Your editor chose the words carefully. As many of you have been thinking, not all “high-functioning” people with autism can write to the Maap to describe their interests, recall their childhood behavior, report their current problems. Not all—not even most—understand language and the world well enough to make it in the most understanding mainstream programs, let alone go to college. They may be more able, but they’re not as able as that. My daughter, at 31, has been able to answer the phone and write down a message for some fifteen years. I remember when it seemed a miracle—our kind of miracle, of course, the kind of miracle brought about by patient, repetitive teaching and behavioral rehearsal. After all, she was thirteen before she even started to read and write. She was older than that before she could pick up the phone and do anything but breathe into it. She’s able now—so much more able than she was. But listen to what she said the other day when she picked up the phone and was trying to find the words to say that her friend Andrea wasn’t home. It was going slowly, so I thought I’d help out: “Say she’s not here and can you take a message.” Jessy changed the pronouns; I guess she’s learned that a lot of the time you have to. But here’s how she changed them: “He’s not there and can you take a message?” Or she comes back from the basement, radiant from checking the boiler. Of course she’s good at checking things; in fact, one of her problems, at work and at home, is how to control the intense anxiety she feels when something is forgotten or out of place. But checking the boiler is different; her face is so radiant that I take a risk. I don’t say, “Why are you smiling?” I know that that’s one of the questions that can send her into an autistic fit, however many times we’ve talked about how that’s not a bad question, that people like to see happy faces, that happiness is contagious. (Do I know why it freaks her out? Of course not, though I can speculate.) But we have to work on these crazy sensitivities, so I do risk saying, not those exact words, but something like them, hugging her: “What a happy face!” She must be feeling relaxed, for she accepts it, even explains, an autistic explanation in autistic language: “The drier going. “You like that?” I say. “Yes—because of things going round and round!” But then: “You talked about my happy face.” (See, she does get the pronouns right a lot of the time.) She talks about her emotions; it that good? She couldn’t have done it ten years ago. “I did get annoyed about that. I smiled about the drier going.” But we’re not home free; she begins to whimper, to cry a bit. But together we get it under control… High-functioning? When she can read and write only the simplest, most explicit English, when her joys and sorrows are so strange, so childlike in their transparency, so autistic in their weirdness, when every day provides anecdotes like these, or weirder still? (Don’t worry, there’s no danger of her reading

this in the MAAP!) Yet this is the young woman who’s just received an invitation to a luncheon for the college’s ten-year employees, who is never late, who knows the routine of the mailroom where she works to perfection (too much perfection demanded of herself and others; see above.) This is the young woman who astonishes the bank by keeping her checkbook accurate down to the penny as she watches to total climb high and higher. (Autistic people rarely have expensive tastes.) This is the daughter who with absolute (of course) reliability vacuums the house, cleans the bathrooms, does the laundry and the ironing. This is the artist whose paintings so dazzle with their unexpected colors and brilliant precision that their sales have raised the total in that bank account by some thousands of dollars. Highfunctioning? I guess so. More able? You bet! More able than last year, than the year before that, than when she left school—and how much more able than that two-year-old who didn’t talk, didn’t feed herself, shrieked like a banshee (who knows why), looked through her family’s faces as if through a pane of glass. Keep on reading the MAAP; keep on slugging, if your child can’t write in for herself/himself, write just the same. There are a lot of ways to function besides going to college. Clara Claibourne Park Ediotr’s Note: Clara Claibourne Park is the author of The Seige: The First Eight Years Of An Autistic Child. Recommended by Dr. Eric Schopler of Division TEACCH and Anne Donnellan, PhD of the University of Wisconsin, it tells in useful detail the story of Jessy’s growth and the ways her family developed to help her. Those first eight years have been supplemented by a 40 page epilogue which takes Jessy through the age of 25. The supplement you’ve just read, though, is up to the minute! Out of print for the past year, The Seige is now available in bookstores. The publisher: Little, Brown & Co., 34 Beacon St., Boston, MA 02106. ******* The Early Years of The Maap (p. 111) I Feel Like Life’s Getting Me Down by David C. Miedzianik I woke up this morning feeling really rough. I know by now that sometimes life is really tough. I washed my hair and had a shower today. The Sun is glowing in the sky today. I’m now thinking bout that concert ticket I bought for you. Why you never went with me I haven’t a clue. Although maybe you never went with me because you’d got cold. Or it was the fact that I was too old. These days I feel that life is really getting me down. Maybe this has come about through years of acting the clown. The days are going by and there’s never a date. How much longer for someone will I have to wait? England is not so much the green and pleasant land of William Blake. There doesn’t seem to be anything pleasant about women these days. As for that matter there is nothing green about them too. So I make another coffee and then make another tea.

These days I feel that life is really getting me down. Maybe this has come about through years of acting the clown.

***** The Early Years of The Maap (p. 119-120) Here’s an excerpt from another poem by Mr. David C. Miedzianik. David is a gentleman who lives in England and has autism. He has written his autobiography, which is available by sending 5 pounds sterling to: Child Development Research Unit, Nottingham University NG7 2RD. The name of the book is simple “My Autobiography”. David has written a second autobiography. If I hear ordering information on it, I’ll pass it along to you. th

6 February 1990 A few years ago I used to imagine I was Prince Charming. Now I know that this isn’t so. On the radio someone was talking about an experiment. This was an experiment to prove that the future has an effect on the present. They said that the future does effect the present. They’ve proved it in some lab. All this as thoughts of Prince Charming go away. Now all there is to think about is today. A few years ago I used to think about time a lot. I used to ride about in taxis a few years ago too. I used to imagine that by the 90’s computers would have super brains. Now we’re in the 90’s there’s more chaos than ever in the World. We still don’t know if Bush is a man to trust or not. To keep the World at peace will take all he’s got. I thought that the 90’s would see a President Ray Gun, Instead of an Ex-President Reagan. All this as thoughts of Prince Charming go away. Now all there is to think about is today. Yes you think the future will be all supersonic when you’re a kid. When you grow up you get to see the world as a not so nice place. Although somewhere in the back of your mind is thoughts of space. Also now we know that we can’t change time’s face. Maybe I’ll be wiser when I’ve seen that TV programme on time. Maybe this program will make a chill go down the spine. Maybe I’ll use my mum’s bottle of wine. This will take away all bad thoughts of time. All this as thoughts of Prince Charming to away. Now all there is to think about is today. David C. Meidzianik

*******

The Early Years of The Maap (p. 121) Dear Susan, We look forward to Maap issues. They are life a lifeline—just knowing that families are struggling with similar concerns helps. We know a few other autistic children and young adults, bur none as highfunctioning as Melissa is. She, like so many we have read about in The Maap, falls between the cracks in our local educational nd

system. She has been enrolled in a Special Day Class (just “regular” special education) since 2 grade, th

and does fairly well scholastically, but it falls short of really meeting her needs. She is a 6 grader and the Jr. High years loom forbiddingly ahead. We have, as yet, no idea of where—or if—we will find a suitable program. One of her plusses is that she is quite talented musically and just this fall, she started piano lessons. In addition, for the past year and a half, she, myself (I’m her grandma), her uncle, and aunt, and (sometimes) her mom, have participated in a musical/theater work-shop known as The Ojai Family Choraliers. We study acting, voice, dancing, and produce shows that are a lot of work and whole lot of fun. This has been wonderful for Melissa, because she’s had to learn to really tune in, understand and follow directions that are, as often as not, given rapidly in the midst of activity and confusion. She’s had both solos and dialogue, and is a real trooper—as well as a ham. We’re really proud of her. Georgia Smith Dear Georgia, What a wonderful grandma you are! I’m sure there are hundreds of moms and dads reading this that would love to adopt you into their families! The community theater/music participation by a person with autism and some of their family and/or close friends is a wonderful idea. Perhaps others will find it a pleasant family experience. Susan ******* The Early Years of The Maap (p. 126) Brain Music by David C. Miedzianik These days everyone is talking about brain music. I’m now looking at the calendar and I see it’s 2004. Although people taking part in this just want more and more. They drive for miles in their cars to escape from life’s bores. This is because brain music is the new in thing. They pay for this with cheques and money saved in tins. They can hear the sound of their own brain when they’re wired up. After that they just can’t give it up. Yes brain music is the new in thing. People can’t measure what joy this music brings. They say that people are looking younger after a few goes at this. Others just say that the whole thing is a twist. Some have even put their own brain music on CD’s. Some brain music sounds better than The Rolling Stones.

Although some peoples brain puts out music. That you have to listen to on your own. This music hypes people up more than listening to. People talking to them from other countries on the phone. Yes brain music is the new in thing. People can’t measure what joy this music brings. Recently they’ve been putting brain music on phone lines. There’s one man that they call the brain music king. To his brain music songs they do sing. They say he’s sold a few million copies of CD’s. With his CD “Come Listen To Me.” Someone even wants to put brain music on micro chips. In a few years these new micro chips are set to replace CD’s. Although at present they tend to put music out on wrong keys. Yes brain music is the new in thing. People can’t measure what joy this music brings. There was some talk of brain music in the late 70’s. Although they didn’t have computers to pull it off then. Since then computer power has increased by a factor of more than 1010. Now I can hear them making brain music in their music dens. Soon people will stop writing music down with pens. Some people are feeding brain music into computers. Soon people won’t need music tutors. One music teacher broke a brain music machine with his flute. Yes brain music is the new in thing. People can’t measure what joy this music brings. Well soon it will be the year 2005 and the Brain music king is still very much alive. They say he’s got a Christmas CD coming out. About it being a hit then that’s no doubt. They’re putting his tune down phone line 909090. All the phones are go go. He’s even coming on TV performing on the Winter snow. He’s about to set us all aglow. Yes brain music is the new in thing. People can’t measure what joy this music brings. *******

The Early Years of The Maap (p. 128) JONATHAN AT FORTY by Bernice Singer Sometimes—rarely, but sometimes— when I see his dark eyes flash with pleasure upon hearing a well-known opera’s little-known cabaletta; when the intensity of his look tells me that, amidst green hills and far horizons, he has zoomed-in on a distant antenna; when the dimple in his tanned cheek twinkles,

and I suspect he is remembering a gaffe of Donald Duck; when I look at him, his gray sideburns delineating his beautiful, balding head— I wonder: What if, over forty years ago, that chromosome had not been quite so fragile: that quirk in his central nervous system had not condemned him to a lifetime of depending upon the good will of others? What would he have been like now? Sometimes—rarely now, but sometimes— helpless with love, helpless to defend his future, feeling my soul drowning in a lifetime of unshed tears, I think FOOL! Enough of “what-might-have-been”! This being, your son, sensitive to the beauty of sound, has greeted you with joy; had brought you a most extraordinary gift: himself

******* The Early Years of The Maap (p. 130-131) A Real Definition of Geometry by Beth Moreno I sit in the class, pencil in hand, Prepared to go over last night’s homework. Blasted rhetoric! I wish not to write my answer to that proof on the chalkboard. I completely messed it up—don’t splatter my mistake in my face. Oh, now our teacher preaches. He’s definitely not in a good mood. I’m paying attention the best I can, But I can’t understand this mess Of postulates, corollaries, proofs, triangles, and other polygons. Monday by Beth Moreno Monday I wake up in A daze and I wonder Why do I have to go through this Again?

***** The Early Years of The Maap (p. 134) Dear Susan, Here is a poem that our son Guillermo composed to the sky one evening at sunset. Guille is a highfunctioning 7 ½ year old with autism and is doing well this year in his small Learning Handicapped class at a local elementary school. He has a penchant for dramatics, and enjoyed reciting his poem to the

class, as well as mailing copies out to friends and family. He also enjoyed printing it out on the computer at home, using the Xerox machine at school, etc. Thanks for the Maap! Sincerely, Denise Burgess & Bob Gomez The Clouds a Poem by Guille I love you, clouds, I love you, sky, I love you, trees for pumpkin pie. I love it when the sky is blue, And when it is, it’s very true. I love it when it’s blue or gray. I wish it wouldn’t go away. And if I see some gray cloud fog I would leap just like a frog! September 18, 1990

***** The Early Years of The Maap (p. 136) …here is a poem Donna Williams wrote: Crouched around a typewriter, I face an empty envelope, It’s carrying about a rock, I’ve come to know as emotions, Let it all out I tell myself, how else can they grow and develop? Rusty tears drop into the equally rusty keys of my typewriter, What emotion is this? I ask myself. There is no answer. Why do I do this, where am I going? Is this happy? -I don’t feel sad. The context isn’t always there-delayed reaction, It’s the echo of feelings held at the checkpoint which says “too much now”. I raise my head. I’m smiling slightly. I feel peaceful… Is there anyone in the world who can tell me what I felt? Damn this thing called autism. But I’ll never say “damn the world”If nothing else, it has a sun and a moon and a sky and the stars WE ALL SHARE. How could I ever give up as long as I know that?

***** The Early Years of The Maap (p. 137-138) Is it Due To Destiny? They say a lot in life is due to destiny. They say a lot in life is due to luck.

They say a lit in life is due to making a fast buck. Maybe life hasn’t got anything t do with any of these things. Well that depends on who’s life you choose. My old grandmother seemed to think it all boils down to destiny. She always said “What will be will be.” She used to be telling me this as she was busy making tea. Well is it all due to destiny I don’t know. Somehow I feel it is from my head to my big toe. I keep on looking at the Sun glowing in the sky. Something tells me the Sun will always light up the sky no matter what. Even if things get hot down on Earth. The Sun will always glow showing what life’s worth. Well what can we all do to change our destiny for the better? I don’t know the answer to that. Right now I could do with seeing a black cat. Thinking about destiny is driving me bats. Well is it all due to destiny I don’t know. Somehow I feel it is from my head to my big toe. Well I keep on looking in the mirror. Every day I’m looking older. Every day I can see more white hairs and lines. Well there’s no fool like an old fool they often say. By the time I’m much older I’ll have gone all gray. I’m getting older without any woman in my life. My mother and grandmother were the only women in my life. Although I didn’t need them in the same way I need a wife. Well is it due to destiny I don’t know. Somehow I feel it is from my head to my big toe. Well it’s hard living away from home. I keep on talking to my mother and grandmother on the phone. I sometimes feel angry towards them then sometimes I feel sad. Well after the big bust up at home nothing seems quite the same. Is this all a new start, or is it my life going down the road from home. I’m in real trouble looking after myself here. Sometimes I could do with the 2 old dears. Well is it all due to destiny I don’t know. Somehow I feel it is from my head to my toe. Well I’m only 34 but I think of myself as being old. In some ways this hostel is making me tough and bold. Maybe some lovely woman will come and visit me for Christmas here. Or maybe all I’ll get for Christmas is the 2 old dears. I sometimes pop into the pub next to the hostel & I have a drink or 2. I find that the odd drink takes my mind off of things. Although they don’t like me going to the pub here. Also in the hostel they won’t have cans of beer. Well is it all due to destiny I don’t know. Sometimes I feel it is from my head to my toe.

******* The Early Years of The Maap (p. 154-155) Here is an insert I found in a newsletter put out by a residence for retarded men. While I don’t wish to foist religious literature upon those of you who may be atheist or agnostic, I felt that the thoughts were sufficiently meritorious to print it. BEATITUDES FOR FRIENDS OF DISABLED PERSONS reprinted from the Winter 1991 issue of the Good Shepherd Messenger Blessed are you who take time to listen to difficult speech, for you help us to know that if we persevere we can be understood. Blessed are you who talk with us in public places, and ignore the stares of strangers, for in your companionship we find a haven of relaxation. Blessed are you who never say to us “Hurry up”, and more blessed are you who do not snatch our tasks from our hands to do them for us, for often we need time rather than help! Blessed are you who ask for our help, for our greatest need is to be needed. Blessed are you who stand beside us as we enter new and untried ventures, for our failures will be outweighed by the times when we surprise ourselves and you. Blessed are you who help us know the grace of God, for often we need the help we cannot ask for. Blessed are you when by all things you assure us that the thing that makes us individuals is not in our peculiar muscles, not in our wounded nervous systems, nor in our difficulties in learning, but in the God-given self that no infirmity can confine. Rejoice and be exceedingly glad, and know that you give us the reassurances that could never be spoken in words for you deal with us as God deals with all of His Children. -Anonymous

******* The Early Years of The Maap (p. 157-158) Dear Susan, Although many of “our kids” have a problem with driving a car, not all of them do. Jim, who is now 24, took driver training in high school. Driving did not come easily to him at first, but he persevered. He took private driving lessons in addition to the driver training provided by his high school. He passed his driving test on the first try at age 17, and has been driving ever since. Yes, he’s had his share of accidents and tickets, but he is now an experienced and reliable driver. In fact, he works as a driver for a courier company. He especially likes long drives of 50 miles or more. He is very skilled at finding his way around in Los Angeles and vicinity. As a child he loved to ride his bike around the neighborhood and beyond. When he got a bus pass to ride public transportation to school, he was the happiest kid on earth. One time he asked me, when I

returned from a long day at USC, “Did you go to USC today? I didn’t see you there.” We determined that we had been at different parts of the campus. His little ride to USC involved two buses and at least 2 hours. Another time he ended up in Pacific Palisades at a friend’s house, just as my husband and our friend were arriving. When asked, “How did you figure out which buses to take?” he said, “I just did.” When I need to determine the best route to drive anywhere, I ask Jim. He knows what streets are best at what times of day. Jim is also good at remembering dates, everything from when we bought various appliances to birthdays of distant relatives. He is good with sports information too. Susan Forthman Dear Susan F., I congratulate Jim on his wonderful achievements. Your letter illustrates so well the diversity and potential of our more advanced autistic loved ones. While my daughter shares your son’s skill at remembering dates, she cannot drive and has extreme difficulty with navigation. Our autistic loved ones, ourselves, and the professionals who work with us should take heed never to stereotype or limit people with autism, due to their knowledge of others with the same disability. Susan M. ******* The Early Years of The Maap (p. 162-163) PARENTS CAN MAKE A DIFFERENCE Reprinted from Momentum, ASA Los Angeles I dreamed I stood in a studio And watched two sculptors there. The clay they used was a young child’s mind And they fashioned it with care. One was a teacher—the tools he used Were books, music and art. The other, a parent, worked with guiding hand. And a gentle, loving heart. Day after day, the teacher toiled with touch That was deft and sure. While the parent labored by his side. And polished and smoothed it o’er. And when at last, their task was done. They were proud of what they had wrought For the thing they had molded into the child Could neither be sold or bought. And each agreed they would have failed If each had worked alone. For behind the parent stood the school And behind the teacher, the home. Author Unknown

Editor’s Note: If I could write such lovely poetry, I would have written a poem that had three sculptors in it. The third sculptor would have been the child him/herself, whose own will to try hard completes the

sculpture. ******* The Early Years of The Maap (p. 169) Here is a reprint from Mifgash Nisi, the Israeli equivalent of The Maap, published by Bernice Singer. If you wish to subscribe, please send $16.00 to: MIFGASH-NISI, P.O.B. 71066, Jerusalem 91079, Israel. NOTHING I ASKED FOR… I asked God for strength, that I might achieve; I was made weak, that I might humbly learn to obey… I asked for health, that I might do greater things; I was given infirmity, that I might do better things… I asked for riches, that I might be happy; I was given poverty, that I might be wise… I asked for power, that I might have the praise of men; I was given weakness, that I might feel the need of God… I asked for all things, that I might enjoy life; I was given life, that I might enjoy all things… I got nothing I asked for, but everything I had hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed. --Unknown Confederate Soldier (Adapted from plaque in the lobby of the Rehabilitation Institute, Chicago, IL.) ******* Volume I 1992 (p. 2) Dear Susan, I am enclosing something I wrote quite spontaneously about a year ago. Writing is usually a struggle because words evade me, and I am such a perfectionist they have to be right. Reading this poem makes me feel very sad. And that illustrates the complexity of my emergence from autism. I continue to grow in my understanding of the difference between me and normal people. That knowledge makes me more secure in my independence, and better able to deal with life situations. I have at the same time a strong sense of my right to be exactly what I am. There is a terrible sense of loss, for the way I used to think, which was mine, and not wrong, only different. My present mind looks at this poor poetry, and wants tot correct the misfitting phrases, fill in the missing connections. I’ve left it alone. It came from a rare moment when I could look back and recognize how different I am, and when words, however clumsy, came to express my feelings. I wish that some other autistic person, coming along the same way, or some parent, gaining a bit of understanding from reading it, may know, as you always say, “you are not alone.” If saying that some are more able means that others are less able isn’t it also true that saying that some are more advanced means others are less advanced? I don’t think that one term is better than the other. I think there is a need to keep changing the words because with repetition they become labels.

I took job training testing recently. My highest scores were in verbal categories. My spatial perception score is only average. One of the most satisfying jobs I ever had is one for which I would not be qualified, based on my test scores. Anonymous

Today I Think High-Functioning autistic means I don’t Understand that home is no longer there. I got a bicycle, rode to the farm, I wanted to see. It wasn’t enough, I wanted to be In that place, to open the door, To see the old dog, so many years dead To see my father’s tools in the shed. The bicycle went. It was too far to ride, Too dangerous, too unbelievable. The memories hurt—houses where they Weren’t supposed to be. I wanted to pick them up, throw them away. But knowing interfered. Is it supposed to be like that? Two memories of the same place? Of course, more than that. But I can’t hold them. Gradually they Canceled each other out. And home was gone forever. There have been places since, only places. Was the bicycle 40 years ago? 35? It was a Few days ago. And about 40 years. I know things change, but I don’t understand. I’m not integrated. I never will be. Editor’s Note: As to your question concerning “more able” versus “ more advanced”. I chose the latter because, if I were the person being “labeled” who was less______, I’d prefer less advanced (less insulting). ******* Volume I 1992 (p. 7-9) Dear Susan, This is a poem my daughter wrote in school around Halloween. She always loved (and still does) Peter Pan. She was also reading the Complete Works of Shakespeare at the time. It’s also in a shape like

Silverstein would write. I hope you enjoy it. Sincerely, Anne Rubright HALLOWEEEN DREAM I hate haunted houses! I hate hearing hoots! And I most especially hate Halloween The last time I went to a haunted house I very clearly heard The squeaks of a mouse. What’s more, I very clearly caught A goblin that escaped my clutches. I ate a bean and I got draught with anger1 When I turned around I saw the ghost of Captain Hook! Ugly he was with a silvery hook. I gaped and had to draw a sword, but without a word, he vanished! And I looked up. I ran away. Next I came and saw a coronet. I then went to the living room and gasped. The ghosts of Romeo and Juliet! I didn’t want to draw. I screamed when suddenly they faded! I saw some batsthey came near me, and suddenly some elves and scarecrows and monster that gleamed A mummy, witch, vampire and Frankenstein came near me, they cackled, they had warts they screeched at me! Pretty soon I woke up, I sighed, I was happy I said “Whew! It was all a dream! For a moment there were things of all sorts! So now when it’s Halloween, when it’s ghost and ghoulie night, I don’t dare go trick or treatin’ So I won’t get any fright!

MORE POEMS Is The World Getting Any Better? By David Miedzianik Well there’s load dying of cancer. Year after year goes by and they never find A cure for it. Others sit in the seats of power wanting

More and more wars. Well isn’t life hard for us all. I s the world getting any better? I can’t find an answer to this. Every day the things wrong with the world makes a longer list. Maybe computers will work out answers to some of the World’s problems. Maybe computers will one day find a cure to people’s ills. While others sit there in houses not being able to pay their bills. Maybe one day computers will pay bills for people. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list. Some say they’re too many people in the World. Others say this isn’t a problem at all. Others say the world is too small. Others have a very sad life while others have a ball. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list. Some say that the world is getting short of oil. Others are trying to invent cars that run on electricity or gas. Doing this’ll not be an easy task. Some streets of the world have so many fumes you have to wear a mask. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list. Some say there’s too much carbon dioxide about. This is helping to cause the Greenhouse Effect. Some say this will make the world hotter and the seas’ll rise. To work out the way the World’s going you have to be wise. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list.

Some say that there’s too many people locked away in jail. While others are locked away in psychiatric units. They never seem to find what makes these people act the way they do. In fact they’ve researched it so much they haven’t got a clue. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list. Some say this country would be better if the government changed. I don’t think our government cares much about people. I don’t think our government cares much about petrol fumes. I don’t think our government cares if England faces doom and gloom. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list. In the USA and Canada they don’t know how to solve it for the World. A lot of governments just make money for their own pockets. Now they’re making even more money making bombs and space rockets. Is the World getting any better? I can’t find an answer to this. Every day the things wrong with the World makes a longer list.

An Unknown Name By Marean J. Price I have a little boy whose name is Jeremy. He was born with autism on August 15, 1983. He is a bright little boy, loving and kind. My life is full of joy because he is mine. He was diagnosed with autism at the age of four. Why he has this impairment I guess I’ll never know. The days of frustrations, the nights full of tears, Will remain with us throughout the years. In spite of the trials that are always nigh, I’m having a ball with this little guy! He never understands everything I say. He learns more and more with each passing day.

He flaps his arms and he scampers about the house. When he is into mischief, he can be as quiet as a mouse. He draws and colors and says, “Mom, how is that?” He gets blue and black ink all over my placemat. He goes through paper like there’s no tomorrow. I’ll keep him supplied if I have to beg and borrow. He is a smart little boy, he loves to go to school, Even though he gets into trouble when he breaks the rules. He says, “ The teacher was mad at me, I didn’t do anything!” But on closer inspection he admits he is to blame. His life is so interesting, I decided to write a book. I would be persistent no matter how long it took. I am Marean Jones Price, my book-Lord, Why Not Me? Was completed in April 1990, pages numbering 123. I have contacted several publishers with no success. To have my book in print, will bring us much happiness. My book is yet unpublished because no one wants to take the risk. Because I am unknown they say, this is the great abyss! O where is that daring publisher who will go against the grain, and publish my son’s story and declare an unknown name? ******* Volume II 1992 (p. 7) CREATIVE WRITING 2001 Space Odderty They send them out into space these days They now have no place on Earth for the different ones. Some say they’re mad, others say they’re gone. They have a base on the moon for some of them. Some of them on this moon base have been upset by drugs. Others sit in a chair all day making rugs. They are ties down in this chair because of near zero gravity. Yes, they’re some strange people on Moon Base 2. It’s now the year 2001. On Earth we wonder where all the strange people have gone. Some people go off into space to get away from the cops. Others go into space because Earth’s too hot for them.

A few go into space to run radio stations. Quite a few are out in space from the United Nations. Up to now they’ve had no wars in space. This is because of the problems of radiation and nuclear waste. Also the law says they can’t take nuclear bombs into spacecraft. Having bombs like these in space would be pretty daft. It’s now the year 2001. On Earth we wonder where all the strange people have gone. There’s now talk of them putting strange people on Mars. That might even send people like this one day to the stars. Some of these people have drinking problems and they stand on space bars. Others find themselves too drunk to drive their space cars. A lot of these people are peaceful kind of folk. This is another reason why war has never broke. Mind you they now have better drugs to calm these people down. It’s a bit upsetting that people on Earth don’t want them around. It’s now the year 2001. On Earth we wonder where all the strange people have gone. On one space station they’ve got a load of hippies. No one wants these people on Earth. So they’re now in a big space station called the Mirth. They think being out in space is one big trip. Others say “ being out in space you can’t get more hip!” Their space ship mind you is one big tip. They also keep landing them tanks full of drugs. You see that’s why on Earth they don’t want these thugs. It’s now the year 2001. On Earth we wonder where all the strange people have gone. On Earth they are talking about changing these folks’ genes. Making these people normal again is everyone’s dream. You see it costs a lot of money to send them out in space. Although they’re there because no one wants them about the place. Some say not having these people here on Earth is a big waste. This is becoming a problem that governments can’t face. Mr. President used to say they’re the bottom rung of the human race. Now all this is leaving his mouth with a bad taste. It’s now the year 2001. On Earth we wonder where all the strange people have gone. David C. Miedzianik

******* Volume III 1992 (p. 4) Guess I’d Choose Me By Donna Williams Going to ask aloud a question, wait to see who answers, Funny how the one that I’d hear first would be myself. Yet if I knew all the angles, why do I keep running? Could it be I’m running for myself? If I needed someone, I couldn’t ask the favor, Strange how one can choke up a stubborn sense of pride. I’d want to say, “I need you”, the words fade to a whisper. It’s easy to go without than reach the other side. I want to find the path, which takes me out of the darkness. If you knew the way but didn’t say, I’d never realize, I’d merely walk among the shadows, my world a jigsaw puzzle, And I wouldn’t find the missing piece when I can’t open my eyes. But who said life would be kind, When the world doesn’t have guarantees, Who could I trust if not me? If I was lonely, and there was only me and you, Guess I’d choose me. ******* Volume III 1992 (p. 4-5) My Own Planet By David C. Miedzianik I’d like to live on my own planet. This would be a place where no one would blame me for things. There would only be friendly humans on this place. I don’t always care much for the human race. My own planet would be a great place to be. It would be a place far away from reality. I’d like my meals brought to me by robot things. I wouldn’t care much for work on my own planet too. Everything I wanted would come from out of the blue. Everything I wanted would be made there by machines.

Maybe one day my dream will come true. As for running my life in this world I haven’t a clue. My own planet would be a great place to be. It would be a place far away from reality. On this planet I keep filling up my diary. On this planet I deep on walking streets. It’s hard doing this in the summer heat. Walking the streets in winter is also hard on the feet. My own planet would be a great place to be. It would be a place far away from reality. On this planet I keep on throwing money away on rubbish. I have no idea on how to spend my cash. On my own planet I could have all I wanted to ask for. On my own planet I would be driven about by a computer car. I would also have a woman up there in space too. She would make me feel all new. My own planet would be a great place to be. It would be a place far away from reality. Everyday I’d look down on the Earth from my planet. I would look and see some change for the better and some for the worse. I would think of being back there as a curse. On my own planet there’s nothing to buy with my purse. My own planet would be a great place to be. It would be a place far away from reality. Yes money wouldn’t exist on my planet. People up there wouldn’t care about such things. People on my planet could sing for their supper. Just like pop singers on this planet do. Money isn’t needed when you trust everyone and everyone trusts you. Mind you things made by robots still come from out of the blue. My own planet would be a great place to be. It would be a place far away from reality. Some people might say they’d hate such a place. Others might say they don’t like my taste. This might be a planet where brains go to waste. Some would like to go to this place in haste.

My own planet would be a great place to be. It would be a place far away from reality.

******* Volume III 1992 (p. 5) QUOTABLE AUOTES In a conversation with a very caring and sensitive father of a young child with autism, I was told, “He is very perfect in his imperfection. He is truly complete.” ******* Volume IV 1992 (p. 7-8) Who Am I By Heather Elson Even though I was born a Halloween baby, I am not a ghost; I am truly flesh and blood and have feelings and habits like other people. I really like most people although sometimes, being friendly makes me anxious. When I get low marks (like 0-50), I’m anxious too. Last year I was in 8 – 5 and just about the smartest in the class. So you can see that I am really quite smart. Laziness is not one of my traits, as I’m very energetic. One of my favourite things is to go for long walks with my dad. In my friendly way I try to greet people cheerfully, especially when I’m at school. You can see by reading this that I am a nice person, not a spooky one. ******* Volume IV 1992 (p. 9)

Days Like These By David Miedzianik We’re living in bad days so they say. Maybe one day things will get better for the World. Some say there’s too much crime. Other’s say that doesn’t matter and that things are fine. Others just drink beer and wine all the time. Some seem to think we’ll do away with wars in the end.

I think that things could be better these days. There’s too much illness, rot, and social decay. “Weren’t we silly in these days?” In the future that’s what they’ll say. Maybe in the future they’ll get machines to run our homes. They already can get machines to answer phones. Maybe in the future they won’t have to lock people away. They’ll just give people pills to make them act good. In the future the mind should be better understood. But will all this know-how be for the public good? At present the present is going by to form the future. Days like these are slowly going by. “Weren’t we silly in these days?” In the future that’s what they’ll say. The people on the TV News keep saying it’s getting worse. One day they shot a TV News man. Now he needs a doctor and a nurse. They now say things are changing in Russia. They wonder if things’ll turn out. Guess work is what life’s all about. “Weren’t we silly in these days?” In the future that’s what they’ll say. These days facts about people are being put into computers. In the future maybe this’ll happen more and more. This is how governments settle scores. By having facts on people. I suppose they’ve got my name in their computers somewhere. Well anyway I’m not bothered and I don’t care. These days computers are only as smart as the people that feed them. I bet most of them that do this can’t hardly count to ten. “Weren’t we silly in these days?” In the future that’s what they’ll say. In the future they’ll have recorded music on micro-chip things. There’ll be no need for CD’s and records and tapes in future days. Everything will go on a micro-chip thing. There always finding better ways of recording people singing. Maybe even radio stations will be run by micro-chips. They can do the job better than people. They’ve had these stations in the USA for sometime now. Mind you I don’t know if it’ll catch on here. “Weren’t we silly in these days?” In the future that’s what they’ll say.

Yorkshire, England August 30, 1991

******* Volume II 1993 (p. 9) You and I By Elaine Popovich I am a resident. You reside. I am admitted. You move in. I have behavior problems. You are rude. I am noncompliant. You don’t like being told what to do. When I ask you out to dinner, it is an outing. When you ask someone out, it is a date. I don’t know how many people have read the progress notes people write about me. I don’t even know what is in there. You didn’t speak to your best friend for a month after she read your journal. I make mistakes during my check writing program. Someday I might get a bank account. You forget to record withdrawals from your account. The bank calls to remind you. I celebrated my birthday yesterday with 5 other residents and 2 staff members. I hope my family sends me a card. Your family threw you a surprise party. I am on a special diet because I am 5 pounds over my ideal body weight. Your doctor gave up telling you. I am learning household skills. You hate housework. I am learning leisure skills. Your shirt says you’re a “couch potato”. My case manager and other professionals set goals for me for next year. You haven’t decided what you want out of life. Someday I will be discharged – maybe. You will move onward and upward. This poem was printed in MO TASH, Missouri TASH’s newsletter. The author works with Lutheran School Services in Missouri.

******* Volume II 1993 (p. 10) Dear Susan, Over this past week, my friend David Miedzianik’s mother died. David writes poetry and has autism. So far, David has written three books, the latest being “Taking a Load off My Mind”. He has also written “My Autobiography” and “I Hope Some Lass Will Want Me After Reading All This”. They are published by the Child Development Unit at the University of Nottingham. For information on ordering these books, write to: Elizabeth Newson, Child Development Research Unit, Nottingham University, Nottingham, England NG7 2RD. David’s address is: 9 Keppel Drive, Scholes, Rotterham, Yorkshire, England S61 2SX. He is very saddened by the death of his mother and needs all the support and publicity he can get. Along with this letter is an example of his poetry from his new book. Sincerely, Kathy Lissner

Editor’s Note: Kathy is right. I hope that many of you will write to David and/or order some of his books. Two are collections of his poems, while the other are his reminiscences about his life. (David is in his forties.) Now that his mother is gone, I don’t know what will happen to him. He has no job, and as far as I can know from a distance, he has no remaining relatives to rely on. The next page contains one of his poems. Looking Forwards to a New Tomorrow By: David C. Miedzianik I saw on the TV a few days ago that they’ve invented a new micro-chip. They think computer things will be able to talk because of this. Maybe soon there’ll be typewriters that’ll print what you say. I like new inventions because they make my day. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. Soon there might be 3-D TV’s. There’s already TV with stereo sound. Soon there might be computer TV around. Some say we’ll be able to shop using computer TV. What a strange way of ordering things for TV. Yes, all of this will be very odd for you and me. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. I wonder if all these inventions might punch a bigger hole in the ozone. Mind you, I think all this ozone thing is becoming a bit of a racket. With selling all these ozone friendly things people are making a packet. No doubt they’ll still be talking about this in my new tomorrow. I wonder if they’ll ever solve the problems of war. In the future there might be war more and more. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. No doubt there’ll be more people on The Earth in years to come. In the future they might shoot nuclear waste at The Sun. They’ve got no more room for this stuff on Earth. Nuclear power is more trouble than it’s worth. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. No doubt people will still have their dogs and cats in years to come. In the future these might have a better deal than people. Some say they’ve got a better deal than people now. I wouldn’t want a dog or a cat anyhow. Maybe they’ll give people loads of pills to forget their troubles.

Although they already do this now. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. Well will the future be either good or bad? I don’t know how to answer that. I suppose things’ll be better for some and worse for others. We’ll still need to trust our neighbours and sister and brothers. I’m looking forwards to a new tomorrow. As there might be then no ideas from the past to borrow. *******

Volume III 1993 (p. 8) Autispeak This is the language we speak, we who can talk without sound. This is our voice in the silence Where every work has weight, and no thought is ever lost. This is the language we speak, we who embrace without touching, This is our dance without bodies Where every touch has meaning, and no glance is ever wasted. This is the language we speak, we who can see without looking. This is our star behind darkness where velvet rainbows sing, and no tear falls unseen. This is the language we speak, we who can float outside time. This is our home beyond nowhere where shadows’ footsteps fall, where memory echoes from the future, and comfort flows back from the past, where smiles have no need for faces and warmth breathes from the frozen places. This is our source, our destination where every song is heard, and no soul shines unknown. Jim Sinclair Our Voice, Page 12 *******

Volume III 1993 (p. 11-12) Trouble With Counselors By Phoebe Murer (age 13)

(Jennifer, the regular camp counselor, has been called home because her dog is sick. The campers anticipate a substitute.) When we got in the cabin, we heard some unfamiliar voice. “Hey, the new counselor’s here!” I cried with joy. Andrea knocked on the door. “Come in” the older girl said. We came in. The girl offered a nice smile and said, “Hi”. “Hi are you the new counselor?” Grace asked. “Yes, I’m Kristy Gibbens, what are your names?” “I’m Grace. These are my friends: Phoebe, Carroll, Nicole, Andrea and Rachel.” “Couldn’t we introduce ourselves instead of you doing all the introducing?” Rachel asked. “It doesn’t make any difference how we introduce, just as long as she knows us,” Grace replied. “See Andy, these are my campers. Grace and Rachel just got into a fight. Guys, I want you to meet my invisible boyfriend, Andy,” Kristy said. “You have imaginary friends?” I asked. “Yes,” Kristy answered “Hey, I used to have imaginary friends when I was younger,” I pointed out. “So did I,” Grace said, “In fact, when I was real little, I used to talk to hats.” “When I was five, I talked to bathing caps and balloons,” I said. “I talked to hats when I was six,” Grace said. “How old are you two now?” Kristy asked. “We’re both thirteen,” I answered. “Hey Kristy, aren’t you too old for imaginary friends?” Rachel asked. “As a matter of fact, no” she answered. Kristy ate lunch with us. “Grace, do you have a boyfriend?” Kristy asked. “No,” Grace answered. “What about you, Phoebe?” Kristy asked. I started laughing hysterically. “What’s so funny about that question?” she asked. “No…no offence, but that is an embarrassing question,” I answered. “Oh, I’m sorry,” Kristy said. “That’s okay,” I said. “Hey, Kristy, I have a boyfriend. His name is Adam Witsford. He is so cute! You should listen to him talk. His voice sounds like a man and he’s thirteen years old.” “Oooooooh….I wish I had a boyfriend like that,” Kristy said. “Do you have a boyfriend?” I asked. “Yes, I have an invisible boyfriend named Andy. He has long blond hair that hangs over his eyes, blue eyes, is tall and he’s eighteen,” Kristy answered. “How old are you,” Grace asked. “Going on twenty,” she answered. The girls giggled. “What is so funny?” Kristy asked. “Do you have any real boyfriends?” Rachel asked. “As a matter of fact, no, but I’m happy with my invisible boyfriend,” Kristy answered. The girls giggled. “I don’t have invisible boyfriends. I go cruising for a real boyfriend, by trying to look so cool,” Nicole pointed out. “So do I,” I said. “But have you found any yet?” Kristy asked. “No,” Nicole and I answered. “Guys, if you have a real boyfriend, raise your hand,” Kristy announced. Rachel’s hand flew up. Carroll did the same sort of sign and blushed. “Carroll, what’s your sort of boyfriend’s name?” Kristy asked. “His name is John. He, um, likes me as a girlfriend and I like him as a boyfriend, but we’re not quite used to each other yet,” Carroll answered. “Girls, if you have an imaginary boyfriend, raise your hand,” Nicole announced. Kristy’s hand flew up. Everyone laughed, except for Carroll and Kristy. Kristy’s lip began to tremble. “Kristy, you look like you’re about to cry. What’s wrong?” I asked. “Just…just leave me alone,” she whined. She burst into tears. “I mean it girls, look at her, she’s such a retard!” Rachel said. “Oh, come on, Rachel, leave her alone,” I said. “Alright, Kristy, I’ll tell you what’s funny. We don’t mean to insult you or anything, but we just think it’s funny and neat that you’re a counselor and you’re the only one that has an invisible boyfriend.” “Uh, girls, don’t tell anybody this, but I’m autistic,” Kristy said.

******* Volume IV 1993 (p. 11-13) A Saturday in November By David C. Miedzianik

Well, it’s another Saturday in November today. There isn’t much sunshine coming through the clouds. Hour after hour goes by on the clock. I’ve set my video to record off the TV. These days I record more than I watch the video. The TV set has a friendly glow at night. The nights are boring and Spring is still out of sight. Well it’s a Saturday in November today. At this rate it’ll still be cold when it’s May. I’ve turned the central heating up it’s so cold. On the house the wind blows. Every night there’s nowhere to go. It’s hard going out meeting new people. With new people it’s hard to say “hello.” The only places to go are pubs. Drinking for me isn’t much good. At pubs you sometimes meet people who aren’t much good. Well it’s a Saturday in November today. At this rate it’ll still be cold when it’s May. I sometimes have an odd beer or wine in the house. I’m kind of a house-drinker. Some nights I can’t sleep good at all. Sometimes the odd drink gets off to sleep. I’ve had my nights broken that much over the years. Sometimes the only way to sleep is by drinking a few beers. My mum used to keep me up a lot of nights you see. Odd times I get to sleep by drinking lots of tea. Well it’s a Saturday in November today. At this rate it’ll still be cold when it’s May. Well at nights when I’m stuck in the house. I then find it hard when there’s no-one about. You might think this is the same old story. Although this would be different if it happened to you. Every day I hope life will bring something new. How to pass the time I haven’t a clue. Living by myself is a lifestyle I’ve never been used to. I’ll have to keep working hard trying to make my dreams come true. Well, it’s a Saturday in November today. At this rate it’ll still be cold when it’s May.

Other Items

High Latitudes By Mirta Mihilovic High Latitudes saw my birth I grew looking at a convex horizon and feeling a perpetual wind: Signs of this huge land and it’s ocean Humble, i confronted this creation. observing the most turbulent mixture: Eternal fire side by side with the glacial. Barren land side by side with the swamp. Cold air kissing the almost tropical soil. And i chose to live in the predictable temperate latitudes. But you came bringing other turbulences: Jigsaw of disparities, alien fire side by side to alien ice, alien air kissing the huge land and its ocean. all together within an almost circular horizon. And, i came back to my known latitudes, their unforgiven realities their unbelieveable beauty. th

This is a quasi-poem inspired by the presentation by Susan Moreno [“Parent Survival”] at the 16 annual meeting of the Autism Society of North Carolina. Note of explanation: I was born in Punta Arenas, Chile. In these high latitudes due to a series of geological happenings it is possible to natural gas escaping next to frozen glaciers, and it creates a mixture of climates in one zone. It is also a region that without the comfort of the urban life, it makes us face life on a daily basis with our physical limitations. In the translation, the use of the small “i” in place of the capital “I” symbolizes humility. I believe that the translation can be improved. English is my second language. ******* Volume I 1994 (p. 13) Cold Weather Payments The weather is cold some days and other days it warms up. Recently there has been snow on the ground a lot.

Some days it even rains but this time of year it’s never hot. It’s a bit unusual for it to snow before Christmas. Even so there’s been no cold weather payments up to now. If the weather gets worse I hope there’ll be payments somehow. Well it’s Tuesday today. There’s no cold weather payments what can I say? I don’t know how people manage without these payments. After all people tend to burn more gas and electricity this weather. People in government sure have it in for people like me. This weekend I watched them fixing the Hubble Telescope in space. They were taking some small steps for the human race. They’re getting better at doing things in space all the time. I’m for all this sort of thing out in space. Although things never seem to get sorted out here on Earth. Well it’s Tuesday today. There’s no cold weather payments what can I say? Maybe I should get on an Employment Training Course again. They threw me off the last one I was on. I’ve had that much upset in my life it’s hard to settle to anything. I wonder what tomorrow’s post’ll bring. I’ve just put the cat out because it wouldn’t eat up. Some days I don’t have much to throw the cat that’s rough. Well it’s Tuesday today. There’s no cold weather payments what can I say? I suppose Christmas will be a real bore this year. I’ve got no relatives left that I can go and see. Aunt Doris phoned up from Florida this weekend. Although it’s too far away to go there for Christmas. I’ve got a relative in Bradford but he can’t be bothered much. Although Uncle Bill and Aunt Jean phone me from time to time. It’s good to hear from people talking down the phone line. Pauline from the next house but one might have me in for food and wine. I’ll be glad to visit Pauline on Christmas Day. At her house her little kid sits and plays. I’m not very good with kids. Living by myself is the best way to live. Maybe Uncle Bill and Aunt Jean will phone over Christmas. They live somewhere in the South of England. Well, it’s Tuesday today.

There’s no cold weather payments what can I say? Well the days go by living by myself. Twice a week the social work bloke calls. Life’s so boring I even look forward to him calling. I keep writing the odd letters to people at home and abroad. From what I write they must think I’m a card. It’s hard to write good letters when life’s hard. I keep writing to lasses but I never seem to score. I suppose they’ve heard all this stuff from guys before. Well it’s Tuesday today. There’s no cold weather payments what can I say? David C. Miedzianik ******* Volume II 1994 (p. 8-10) Information Line On the Gifted Person With Autism BY JULIE DONNELLY During the last year I attempted to send out a newsletter to those concerned about gifted individuals with autism. I underestimated the effort that this would take on top of a full time job as autism consultant/inclusion facilitator and working on a doctorate in Special Education with a focus on research in autism. Recently, I decided to throw my writing energies into helping Susan Moreno, who does this wonderful newsletter. The first question the reader might ask is “What is the difference between the gifted individual with autism and the High-functioning or More Able person with autism that Susan’s newsletter has always addressed?” After all, it seems as if most individuals with autism, whether called high or low functioning, have gifts and talents. My perspective came from finding that Gifted Education in the schools is now beginning to address the needs of students whom they call “Special Needs Gifted.” Formerly, to qualify for gifted education programs, a student had to have a very high IQ and very high achievement and be that sort of cream of the crop student who does everything right. Many students, who were extremely high in one area but not another, or who tested poorly, could not qualify. Some became discouraged or bored in the schools and their achievement test scores, grades or behavior held them back from receiving the enriched education that could encourage them to meet their potential. Some had physical, sensory, or neurological disabilities that masked their high abilities. In the past ten years there has been a growth in the literature (articles and books) on these Special Needs Gifted students. Regulations have been changed and many programs have been started that serve the Gifted Learning Disabled, the Gifted with behavioral or emotional disorders, and those with sensory or physical handicaps. In my review of the literature, however, I found not one reference on the gifted person with autism, a category that seemed very obvious to me because of the many individuals I know who have exceptional abilities often masked by that disability. It became my mission to see that our children could be served in these new programs for Special Needs Gifted.

I felt both professionals and parents needed to become aware of this information. Toward this goal I wrote, with Dr. Reuben Altman of the University of Missouri-Columbia, an article on the gifted student with autism that has been accepted by one of the leading journals in gifted education, the Roeper Review. I also have presented this information at state and national conferences, and to further inform parents and professionals, I published a newsletter and now a column for The Maap. The basic theme is this: There are many individuals with autism who are now able to function within the regular school setting and who have exceptional gifts and talents, along with some areas of academic, social and behavioral difficulty. They have previously been served through special education for their weaknesses, and their strengths often ignored or treated as “savant tricks.” Many schools or whole states are establishing programs for the learning disabled gifted, underachieving gifted, culturally different gifted, and/or disabled gifted. Many schools or states are accepting alternative criteria for gifted programs. When considering educational services for a person with autism, their strengths should be used to motivate and enrich their education. This may include being served in multiple settings including the regular classroom, special education services, and/or gifted programs. As gifted education is beginning to accept that extreme ability can occur with disability, they need to know that many students with autism fit this profile. Parents should be aware of this to advocate for their children, and professionals should be aware so these students are not overlooked when choosing students for gifted programs. Within this column, I hope to share information on programs, resources and individual successes. Please send me information that could be helpful to others such as your local or state gifted criteria, policies or programs that favor special needs gifted students. This area is new and we must work together to help nurture and expand this type of service. In my newsletter, I was also publishing information on some individuals with autism who have been successful in the educational system and are now struggling with the employment world. To help these young adults we need to network and share leads and resources. Brian Lenehan, who has a Ph.D in organic chemistry, is now employed. Congratulations, Brian!! Others still looking for professional work include: Kathy Lissner of St. Louis Missouri. Kathy has degrees in political science and medical transcription and has an interest in advocacy work for disabled persons. Jean-Paul Bovee has a Master’s degree in Medieval and Roman History and is completing a Master’s in Library and Information Science, summer 1994. Jean-Paul is looking for employment in library related work but also has experience in the disability field. Write these individuals in care of my address or The Maap. I am beginning a research project in which I take an in-depth look at the educational life history of several gifted individuals with autism. I am looking for individuals who: 1) have completed high school, 2) have been diagnosed with Autism, Asperger’s syndrome or Pervasive Developmental Disorder at some time in their life, 3) have at had some time had an intelligence test with a full scale or section score over 125 or subtest of 12, 4) and are willing to be interviewed, share school records and have one or more family member and professional involved in their life be interviewed. I would like to have a diverse group of individuals (gender, ethnic background, rural/urban, etc.). The purpose of this research project is to increase our knowledge of what educational practices are of most benefit to these individuals. I would appreciate any assistance in finding persons who are willing to participate. Please feel free to write and share information or ask questions about the topics in this column: Julie A. Donnelly 5350 Hayes Road, Columbia, Missouri 65201 *******

Volume III 1994 (p. 8-9) The following poems and letter are from Our Voice, the newsletter of Autism Network International, Issue #4. If you have autism and wish to be in contact (in writing, by E-Mail, by phone, or in person) with others who have autism, A.N.I. may be for you. Subscription fee of $15.00 per year ($20.00 overseas) for our voice can be sent to: Jim Sinclair, P.O. Box 448, Syracuse, NY 13210-0448. Feeling Love and Being Aware of The World As my heart fills with joy, yet feels all the pain I question myself have I made any gain ‘Cause the world where I was doesn’t have a road back. The Sign said one way now look where I’m at In a grown-up body with the spirit of a child Where the rules of this world upon me are piled Yet I’m striving forward can’t you all see To be the bests that I can be Won’t you please look past my far-away gaze And into my heart where hope fills my days That the effort to join “your” world as my own Will someday allow me to feel at home ‘Cause it’s frightening to be in a new atmosphere When what I experience isn’t quite clear Yet I’m striving forward cant’ you all see To be the best that I can be Katherine French

Dear Jim Sinclair, My non-verbal autistic son, Lincoln Grigsby enjoys your newsletter very much. He’s excited about what the future holds for himself and other like him and is grateful for the chance to share ideas and thoughts through “ Our Voice.” Memories” is the first poem he ever wrote. He had been using facilitated communication a few months and through this technique came the opportunity to share his gift. “Freedom Fears” was written just before he moved to an apartment or his own. Thanks for the wonderful work you’re doing. Joan Grigsby Memories Memories bring me great joy sometimes They go in nice happy circles that die quickly High rides that make me spin Great clarity for happy times My heart has good feelings for my memories Memories hold great value to me sometimes

Lincoln Grigsby

Freedom Fears My move keeps coming My independence is fearfully close at hand. Ready to begin my new life alone. Strange to fear what I’ve longed for so long Keep my place in your heart, Join me in my newfound freedom. Life is each day One step at a time. I’ll trust myself to feel this growing pain And survive Ready to crawl. Ready to fly. Really ready. Really afraid. Lincoln Grigsby ******* Volume IV 1994 (p. 8)

The New Age By David C. Miedzianik They say we’re going into a new age. I suppose this has to happen at some stage. At present they’re trying to make new micro-chips. There’s also talk of a new age on people’s lips. Soon there’ll no doubt be machines you can talk to. Soon there’ll be computers that you can mop-up with. They’ll be so good these machines you might even think they live. We’re all going into a new age. I suppose this had to happen at some stage. As the years go by machines get brighter. As the years go by machines take people’s jobs. Well that’s what some people say. Then they say it leads to social decay. Although seeing all these new machines makes my day. Maybe it’s not an idea for machines to do too much for people. If this happens then people’s brains might waste away. Some say machines just make money, and others have to pay.

We’re all going into a new age. I suppose this had to happen at some stage. I really liked that solar powered grass cutter on Tomorrow’s World. Tomorrow’s World is a great programme. They show future inventions on there. Soon The World is going to be a changed place. Soon mankind’ll be going into out space. They’ll be doing this because there’s less room on Earth. They want to see what the rocks in space are worth. Some see the gravity of the Earth as a curse. We’re all going into a new age. I suppose this had to happen at some stage. Well some things get better and other things get worse. Some say the new century will start with birth of the new age. As far as man’s history goes this’ll be an interesting stage. Then they might have cars that drive themselves. This’d be good if you can’t drive like me. Although for people who drive for a living Cars like this wouldn’t fill them with glee, As people like this wouldn’t know what to do with their car keys. We’re all going into a new age. I suppose this had to happen at some stage. Well it’d be great if they could stop people getting old. I don’t suppose the new inventions’ll do this, Although they might find cures for some things. Will the new age bring the good life to people? Some will do well out of the new age, and others not so well. Who’ll be the winners and losers on-one can tell. It’ll be up to people themselves if they want to do well. Although what the new age’ll be really like no-one can tell. We’re all going into a new age. I suppose this had to happen at some stage. *****

27 Looking Back at 15 by Katherine French Reprinted from Page 3, Issue 4 of Our Voice

I used to think God was punishing me. I was unhappy, disturbed, scared, not comprehending everyday life. I felt I was in a trance. I feel empathy for that teenager. She hurt and no one felt her pain. She lay alone on her tear-soaked pillow. She cried every day. Alone in her world. Not feeling the rhythm of life. She was pulled along like a strip of film by a camera’s gears. Other people chose the photos imprinted on the film. She was too confused, overloaded and numb to look through the viewfinder to choose a photo. If only someone would have slowed down and not advanced so rapidly. Every day was a double exposure. I absorbed nothing of the distorted images cast upon me. The final print portrayed the double exposure. Inquisitive people stared down at me to figure out what I was. Depressed? ManicDepressive? PMS, Borderline Personality Disorder? What I am is Autistic. I now advance my film in slow motion. I am happy and content with my style of living and of learning. I take the time needed for me to process this adventure called life. I limit the subjects in each frame and focus on a comfortable amount of scenery. *****

Volume I 1995 (p. 5-6) “The Day I Became Someone Else” by: David C. Miedzianik Well the clock went past 12 Midnight. This was when I became someone else. Well I thought it was great to be someone else. It made a change not to be on the sick for once. Well at 9AM I set off for town. This was a day when people wanted me around. Well it made a change to be someone else. Things were seeming better, while I was under this spell. Well I got talking to some lasses. They said they’d meet me maybe someday. They’d no doubt meet me after, this spell had gone away. It was great to have a clearer mind. Before I was on so many pills it was unkind. I hoped to find a lass before the day was up. If I couldn’t get one this day then it’d be tough. Mind you I’d had a life-time of things being rough. Well it made a change to be someone else. Things were seeming better, while I was under this spell. Well I thought I’d make the most of all this. So I stopped down town to get to know people. Some people thought I was a stranger from out of the blue. Others knew who I was, someone knew. Mind you on this day my bus-pass wouldn’t work.

Paying full fare made me feel like dirt. Well it made a change to be someone else. Things were seeming better while I was under this spell. Well a lot of people seemed to like the new me. It was great although the day was going by now. I looked at my old library ticked under David’s name. I wondered after this would things ever be the same. I had an identity before even though it didn’t please me. Now people see someone else in me. Has this really happened or is my mind at sea. Who cares as long as I’ve still got the house keys. Well it made a change to be someone else. Things were seeming better while I was under this spell. Well the day was getting over. It was now 11:30 PM at night. There was a time when all there was was moonlight. That doped-up feeling was starting to come back. I was starting to think again of all life lacks. I also knew that this day would never come back. Well it made a change to be someone else. Things were seeming better, while I was under this spell ******* Volume II 1995 (p. 12-13) “School” School is Chores Homework Ow a paper cut Oh all the homework I have to do Later I get to go home By: Mary Ingold

“Mission Impossible” By: David Miedzianik Well things haven’t been easy since I’ve been a kid. Going to school was hard for me. As most of the kids didn’t like me that much. I suppose it was my fault a lot of it, for causing a fuss. I always liked doing silly things at school.

Silly things like acting the fool. Well, life isn’t all that easy for me. In fact my life is Mission Impossible, for anyone to see. I wonder if I’d done this or that, things’d be better. In the situations I’ve been in it’s hard to have known what to do I suppose I’m all washed up now. I’ve got to get out of this boring life somehow. How I can do this I don’t know right now. Anyway if it’s boring or not, I get by somehow. Although at night everything seems wrong instead of right. That’s when I feel I’ve got to get out of this boring life. Well Life isn’t all that easy for me. In fact my life is Mission Impossible, for anyone to see. Well the social worker keeps on calling up. Sometimes this bloke will help me in the garden. Other times he’ll help me tidy up. Then other times he’ll sit and talk Then other times we’ll go for a walk. These boring years have left their mark. Well life isn’t all that easy for me. In fact my life is Mission Impossible, for anyone to see. Well I got up early this morning and had a shower. I charged the electric shaver up for just over I hour. These Haloperidol tablets I’m on have a lot of power. They’re so strong that I sleep a lot. Then I don’t notice the passing of time. Ray says these tablets are stronger than beer and wine. Ray keeps telling me off, as he’s fed-up with my jokes. Some of my jokes are a bit crude to such a great bloke. Well life isn’t all that easy for me. In fact my life is Mission Impossible, for anyone to see. Well the cat comes in from time to time. It’s really the cat from next door but one. It comes to me because I feed it a lot. Cats’ll come anywhere where they’re fed. A cat is good company when you live by yourself like me. Living by myself makes my thoughts go out to sea. Well life isn’t all that easy for me. In fact my life is Mission Impossible, for anyone to see.

SONNET TO MYSELF By: Sharron Loree Solitude gives me time to contemplate, My only independent destiny. No detour can excuse me from My fate, I am my savior, no one else can be. I’ve forged myself a long and tempered bond, A fine accomplishment of many days. There is no one of whom I am more fond. Or who is more deserving of my praise. I cannot bear to be without myself, A true friend is difficult to come by. Discriminating, I’m my greatest wealth, And will be, steadfast till I die. No Will-O’-the Wisp friend am I to me, It’s been a question of proximity.

Valentine Sonnet By: Sharron Loree Whilst a prince bent down with Cinderella’s shoe, His gleaming head reflected the setting sun. Ravages of the past had touched her too, Whose brow was furrowed with what life had done. Snow White and her Prince were filled with terror, Beholding one another’s countenance. Each crossed a desert to meet crumbling error, Glimpsing eternity caused them both to wince. The prince that stooped to kiss a Sleeping Beauty; Also moved haltingly because of his age. Her sparce grey tresses hung down gracefully, Encircling the face of a weary sage. Sharp shards of time may pierce some cherished myths, Before we’re wakened by our truelove’s kiss. ******** Volume II 1995 (p. 14)

Why Shy? By Geneva Wulf I’m two people The person you know The one you see, But you don’t see meThe real me. My words make sense. The relay a thought. They paint a picture, But when they come out They change. One little word Came out wrong And ruined the thought. It doesn’t make sense But it did! You repeat my words As you heard them But they aren’t mineNot what I meant So… I’ll try again. You see the panic The frightened fawn. You hear the stutter When the words go wrong, But that’s not me. I thought I said The thought I thought Just as I thought it, But I didn’t It changed. I’ll try again The same idea. I’ll say it right, You wait and see. Oh, darn – it changed again! I’ll carefully choose

The words I’ll say. Here they come My idea …Bingo!… It took three tries To say it right. Two tries were wasted And you wonder why We’re shy? ******* Volume III 1995 (p. 5) LITTLE LADY: OMNIVORE CAT By: Carly Orosz, Age 10 Ever since I got my cat, Little Lady from a farm, I have always admired her. She is white, and all of her tail and the top of her head is black. She also has a black spot on her back and one directly underneath it on her side. She has silvery grey eyes that glow with an unearthly silver light in the dark. When we got her home the next door neighbors came to see her. We discovered her strange habits at dinner the next night. Little Lady hopped up on an empty chair and looked around for a while. Then she hopped down and ate a pea that my little brother had dropped. Then, a few nights later, a kernel of corn was dropped and Little Lady ate it. Her favorite food is chicken. She likes to chew on door stoppers and eat houseplants. Mom now puts houseplants where Little Lady never goes and, since the door stopper in my bathroom is the only one she chews, I wrapped a chenille stick, or a wire decorated with colored fuzz over it. We all love Little Lady, even if she is a lot of work. ******* Volume IV 1995 (p. 6-7) “The River of Life”

By: Rachael Louise Riccobene Life is a river which flows in all different directions at once. In this river you may come to many crossroads. In these crossroads you have to make a decision on where to go in life. When you come to these crossroads you have to decide which path to take. The river is a very important body of water in your life. Remember the river of life has many paths. One may lead to happiness. Another path may lead to peace and joy. This river may lead to anywhere. Just remember it is up to you where your river goes. Remember to love this river, take care of it and it will love you back. *******

Volume IV 1995 (p. 7) Dear friends: A wonderful thing happened at the Maap Conference. It was something I had longed for all of my life, but lately I figured out that my chances were in the less than 10% level. On the plane back to California, I began writing what I was feeling. Some A.S.A. directors heard it and said that I should send it to Maap, ANI, etc. for publication in newsletters and other literature. Since so many people were a part of my “miraculous” event, I have written an “open letter,” because they know who they are. This is to sooo many people that attended the Maap Conference: This open letter came from my heart, gliding on riverlets of tears. (of joy) I’ve never had a peer group. I’ve seldom experienced acquaintance and had nearly given up looking for either. “Peace at Last” Contentment, I’ve found contentment. No stress, no fear, abiding Contentment. I came to you, stressed out, fighting tears, alone!, and feeling unwanted. At church I’m wanted, (They have no choice). At home I’m wanted, but 2,000 miles away? I was scared. I had a thousand “what if’s.” What if I get lost? What if I lose something? What if I’m rejected? What if?…What if?…What if? BUT…I was greeted by smiles, and outstretched hands. “Oh! Good! You made it!” I was welcome, I was wanted, I was Home? A second family, that’s what I found. An extended family, an international extended family – Wow! I now have…about twenty…twenty new brothers, twenty new sisters – No!…Wait…twenty and twenty makes forty. I have forty new brothers and sisters. If that isn’t extended family then what is? They came from other states, other nations, even other continents, and have entered into my NEW extended family. I arrived scared, next to panic. Wanting friends, but afraid to ask. Or, perhaps not knowing “how” but others did too! We were all anxious, all hesitant, excited and afraid, thrilled and panicking. But, commonality took over. We had more in commonality than we did in diversity. Commonality “bonded us” into a family. There is now a happiness inside of me. One I can’t contain. (I think the Cheshire Cat’s grin took up residence inside of me.) The happiness is sooo BIG it keeps dripping out of my eyes. I sit here contented grinning on the inside of peace. That cheshire grin tickles and makes me grin. How can I say “thank you!” How can I ever tell you how precious you have become to me. In you…I have found a reflection of myself. In you…I have found “I’m O.K. you’re O.K.!” I’m not the me I used to be, I’m now a part of the bigger WE! Thank you, Geneva Wulf ******** Volume IV 1995 (p. 8)

“Moon Looney-Base K3” by David C. Miedzianik They send a lot of misfits up to the Moon these days. They say it’s good for them to be away from society like this. No one cares because they’re misfits. These people have Moon-bugs to drive around in. They have lots of air up there all stored in metal like tins. This stops the air up there from getting thin. Well they say they’re mad on Looney-Base K3. As they’re not the kind of people you’d have round for tea. One of them on K3 stands on his head. Another one keeps saying the cops have shot him dead. There’s one more there that wrote about the Prime Minister. Is he there for some reason that’s sinister? There’s yet another that said he was the President’s Man. Do they put people there for carrying the can? Well, they say they’re mad on Looney Base K3. As they’re not the kind of people you’d have round for tea. They used to do this kind of thing to people once on Earth. Now they’re doing it again in space. Does going into space give hope to the human race? Well I know it’s the year 2103. It’s also a shame these people can’t get back home for tea. Instead they have their teas on a Looney-Base, well what a place. Well, they say they’re mad on Looney-Base K3. As they’re not the kind of people you’d have round for tea. Well, there’s some talk of getting these people back to Earth. Although I don’t think this’ll happen somehow. The people in power don’t want these people back. You see if they shoot their mouth off they’ll get the sack. The people in power know there’s some sane up there. They’ll not stay forever with the loneliness up there. They say they’re mad on Looney-Base K3. As they’re not the kind of people you’d have round for tea.

******* Volume IV 1995 (p. 14-15) INFORMATION LINE ON THE GIFTED PERSON WITH AUTISM By Julie Donnelly In previous columns, I have explained why it is important to add another new name, Gifted student with autism, to the confusion of names such as High-functioning Autism, Aspergers, Hyperlexia, Pervasive Developmental Disorder, and More Advanced Person with Autism. Gifted Autistic is an educational term that would be understood by professionals in the gifted field whose jargon includes Special Needs Gifted and Learning Disabled Gifted. These teachers and administrators would not understand and be inclined to choose for their programs students with labels that use Autism/ Asperger/ PDD terminology. To get our students in their programs, we have to define our kids in their language. In this column, I want to discuss what it is that good gifted programs do that make it worth the effort to advocate for including our students. The first and most obvious is in that re-labeling students Gifted Autistic, we are recognizing their strengths as well as their weaknesses. Our deficit model of labeling and treatment has resulted in poor self esteem, stress, and lowered motivation. Recognition of their gifts can give these individuals a reason to stay involved with school and learning. They are often able to find peers, teachers, and mentors who share their intense interests associated with gifted programs. They find subject matter that is more stimulating and they can increase their learning to a speed at which they are not bored.

Gifted programs have more freedom in their choice of content. They often choose to study topics that are of particular interest to the group of students that the have in the program. They look at topics in more depth and study the people and methods beneath the surface details. However, it is not just the choice of topic that is different, it is the method and thinking processes that are encouraged. There is more open endedness and self-responsibility in their studies. Higher level thinking is promoted and evidence of good reasoning may be as important as the getting the “correct” answer. Students are expected to research subjects of interest and learn how to write up and present their findings. Material is presented in a variety of ways, including media, hands on, simulations, and group interactions. The pacing is faster and there is more variety in the curriculum. The setting of a good gifted program usually varies from the regular classroom. Learning is more student centered and encourages independence rather than dependence. There is often higher mobility in this type of learning environment, because it is assumed that you will have to go places and do things to get information, rather than to sit and listen to lecture. Gifted learning deals more with process than product, but when there is a product, it tends to be something that has value in “real” life. Students often study the real problems of science or society. They present their performances to real audiences. Their inventions or solutions may have real effects on their lives. Good gifted programs are future oriented and include the arts, world affairs and global perspective, computers, thinking and communication skills, and career education. In addition, it is being recognized that many gifted students need counseling and support in learning social skills. Just as our high-functioning students with autism may have strengths in intellectual abilities, but poor affective development, many exceptionally bright students are at risk for social development problems. Good gifted programs are now teaching to Bloom’s Taxonomy of Affective Education as well as his cognitive levels. Currently, there is debate over “inclusion,” and whether gifted students should receive separate programming or be in heterogeneous classrooms. Real life is heterogeneous, and I believe children should be prepared to live and work in a society with individuals of all levels of ability and disability. Ideally, good gifted curriculums could take place in any classroom and teachers could adapt to meet individual needs. However, if this is not happening in your school now, you may want to consider whether pull-out gifted services would be of benefit to your student with High- functioning Autism or Asperger’s Syndrome for at least a portion of their program. Special Needs Gifted programs have been organized for those students who have both abilities and disabilities, so they can receive special programming and support services. Parents or professionals who have had experiences with this kind of programming are encouraged to share what they have learned by writing me through MAAP Services. ******* Volume I 1996 (p. 4) Missing Pieces-Hannah’s Journey (For the Love of My Daughter) by Mary Jo Weaver Dearest daughter so long awaited, you were the fulfillment of a prayer said long ago. As I embraced you Hannah, with my devoted love on the first day of your life, the world took no notice and was not prepared to greet

you. Instead of laughing coos and smiles, this world engulfed you with cold indifference. As you grew Hannah, my heart wept realizing you were not like all the other children. As I cherish each one of your unique characteristics, I wince at the world’s apathy. I am angry at the unforgiving world we live in, which professes empty and meaningless words about children’s value. I know what the world fails to acknowledge – in reality, you matter little to anyone, but your mother. Hannah, I long to protect you from people’s merciless scrutiny. I ache, as I watch you struggle daily for acceptance. You don’t understand the world you live in, I wish I knew how to reach you. You keep trying to be “one of the kids,” but you have no idea of how to fit in. Hannah, you are a mysterious complex puzzle. You have so many missing pieces. I wonder, How ca I find the pieces to set you free? Oh my innocent Hannah, I join you in your valiant relentless struggle for acceptance in this world. May God one day grant your battle is won. Not only for you, but for all the children who share your journey.

******** Volume I 1996 (p. 5-6) Rhyme Time By Corey Cafagna I don’t like the O.J. Simpson trial, Because it makes me turn the dial; I just want to watch something else on T.V. Like Willy Wonka and the Chocolate Factory. I don’t like doing my homework all day Because it makes me want to say, “I wish I could learn only in class, so I could get good grades and pass.” I don’t like getting into trouble, It makes me want to vanish like a bubble. I’d love to get my wishes all the time, So no one would be mad as if I committed a crime.

I just wanted to win a card game, So the winner won’t always be the same. It’s fun to win and not lose, So I won’t have to get the blues. I like to enjoy my good luck, But I won’t make the loser feel like a dead duck. I just want to live in a place Where everyone has a happy face… *******

Volume I 1996 (p. 9)

“The Puppet” Anonymous I am a puppet, indestructible, undying. My strings cannot be seen, nor can the people pulling them. Strings, connected to my limbs my heart, my mind. Someone’s running my life, and I cannot break the strings. Because, you see I am just a puppet. With no feelings, no tears, never given a chance. Yet, as the wood inside rots They will just fill it back up with something stronger. Because I am a puppet needing nothing to survive. But won’t they be surprised when all the wood rots away and all they can hear is a voice laughing. ******* Volume II 1996 (p. 6) a paper by Daniel Enstrom Grossman, age 8 I made two, straight, narrow slivers of rainbow colors with a six-sided, plastic, transparent cube. I made a pair of oval shaped rainbows on the wall with a five-sided, glass, transparent prism.

******* Volume II 1996 (p. 6-7) Only A Few Are Left Now by David C. Miedzianik

There used to be a lot of people on the earth. Only a few are left now. At one time people used to be more common than sheep. Now most of them are all gone. The few that are left, are working out what went wrong. st

In the late 21 century many got ill. Also many were killed. Was it the pollution that made them ill? Also why were the others killed? Some think it was because they were too poor to pay their bills. Well only a few people are left now. They’ve got to get by somehow. People became victims of their own success. The world of science advanced so much. That science was just about all they’d trust. Science made people live so long, that space to put them was gone. So they started picking off the poor. This was all covered up. The world where science solved most things was becoming tough. Even some of the rich felt as if they’d had enough. Science had solved some of the problems of disease. Although the way people were treating each other didn’t please. Well only a few people are left now. They’ve got to get by somehow. Well the few that are left now sit on the hills. They have only the sun and air to please them. As they pay no bills. The few that are left don’t worry about being killed. They’ve seen too much, that’s why they now sit on the hills. Maybe one day they’ll go into the valleys and start again. Although most of them don’t want the pain. Some see their lives on the hillsides going down the drain. Some won’t go into the valleys because they’re left insane. Others stop on the hillsides for reasons they can’t explain. Well only a few people are left now. They’ve got to get by somehow. Radiation and pollution were making people ill.

Now there’s only natural germs and nature left to kill. In some ways mankind has advanced so far. Now there’s no petrol for cars too rusty to drive. From the hillsides, you can still see old roads and old towns. Towns in which no one walks around. Some won’t go into the valleys because of the chemicals in the air. Sometimes these chemicals turn into smog in the sun’s glare. Others say all this needn’t have been. This happened because people on Earth wouldn’t work as a team. Well only a few people are left now. They’ve got to get by somehow. ******* Volume III 1996 (p. 1-2) Dear Susan, We have found your information packet very interesting, as was “The Maap” and are grateful to you for your providing this information. As the English as a Second Language Support Teacher for Special Educational Needs in Glasgow Division I am currently involved in the teaching of two pupils diagnosed as having autism, but whose home languages are not English (one from the Chinese community whose language is Cantonese and one from the Nigerian community whose language is Ibo.) Up until now none of the team have been able to find reference to any research/findings on pupils like this. I found your address via the Internet and even there I could find no reference to Bilingual Autistic children. I would be very grateful if you can help me by providing information or contacts on this subject. We here were interested in your account of your own experiences as a parent of a child with two background languages. As we are coming from the “bilingual/educational” point of view, so to speak, we find advice to exclude a home language difficult to accept, as we are well aware of the benefits of bilingualism in general, and have seen it benefit children who have learning difficulties. It is a problem when you get professional from different fields giving what appears to be conflicting advice from genuinely held convictions. I feel for parents for whom English is not their first language (and who sometimes feel that they are not particularly competent or confident in it). A language is not just words, but concepts and ideas, a culture and history all of its own. I wonder if we are not cutting some of these children off from their birthright by telling parents that they must only use English with the child. Your experience with your daughter who has a complex language and communication difficulty like Autism makes me wonder if I am right – but until there is research evidence no one will know. I would be very grateful if you would print my request for any information in this area. Thank you for your assistance and wishing you all the best. Yours sincerely, Catherine A. R. Brown Bilingual Support Unit Dowanhill Primary School 30 Havelock St Glasgow G11 5JE, Scotland *******

Volume III 1996 (p. 8) FOR AN AUTISTIC CHILD To you in your world, Locked inside yourself, An island Isolated winds in your mind, To you, locked inside beauty, inside anguish, You live breathe die emotions too profound to understand, Little one curled up rocking, Your floor your world, Safe, Just you, Your little expressive hands, like tiny birds talking in flutters, Your little angry snarls repel a monstrous outside realm, your beloved treasures: Buttons Diminutive fairy animals Smooth wooden beads Dots of sunlight on your wall Humming your songs to calm your anxious hands, Safe, Just you At one rhythm, Your world only bits of those others who come and go as currents of air barely ruffling your forelock, Your face a delicate empty mask to those who see only with eyes, Those who don’t understand You world To me, watching you, I see myself, I sing songs for you, Little one, to tell you You don’t have to forsake your world to be free.

Jasmine Lee O’Neill ******* Volume IV 1996 (p. 7-8) The following is a speech given by Mr. Perry Hoffman at our September Maap Conference. Perry’s talk was riveting to his audience. The feedback afterward was so tremendous that we contacted him and he agreed to let us reprint it in the Maap. Man with a Briefcase By Perry Hoffman I observe the man with the briefcase and I wonder, “Where is his destination? What kind of life does he have?” Neatly dressed in business attire, he seems to me to be very important. The man with the briefcase probably drives a car, wears good clothes, and engages in regular conversations with his girlfriend or spouse. Does the usual things with his wife and children. He is cleaned – polished. Smooth. Slice of Jimmy Stewart Americana. Down to earth, all-American guy. I’d love to meet him. Wouldn’t anyone? I look at the man with the briefcase with envy. I want to be just like him. One thing is for certain he’s not autistic. You won’t hear echolia from this man. He doesn’t need routine. Doesn’t need time for Judge Wopner at 6:30 like Rainman. I sit in my room a prisoner to my autism. Mom and sis doing their loving best to get me out. I wanted to get out- really get out. I wanted to love, to feel, to connect. But I couldn’t. I was stuck. So I continue to look at the man with the briefcase and say, “How do you do it? What’s your secret to relationships?” Flashback – December of ’78. Cute red head girl caught my eye. Looking to impress. If she liked me, I would get boarding pass to real world. Closer to having a relationship. Closer to my dream of becoming the man with the briefcase. Closer to being a regular guy. Through my shyness and awkwardness, I summoned the courage to get her number. I did it. I had arrived. I started becoming a pen pal to her. She started telling me intimate details about her hopes, dreams, and aspirations. Perhaps this was an opportunity to tell her what I was – that I was autistic. Wrote about autism in Christmas card. Days and nights passed. No response. Was it something I did or said? I turned to my friend and he decided that we should go over to her house. In excited anticipation, I bought her a little Christmas gift. When we arrived, I looked into her soft sweet face. Upon seeing me, she turned to my friend and said loudly, “Now why did you have to bring him and his autism over here?” I was devastated. The Christmas present I had for her shook in my hand. I walked to the nearest garbage can and threw it away. “Boy was I stupid,” I said, crying. “Why in God’s name did I have to tell her that I was autistic as a child?” From that point on I denounced my autism. I buried it, vetoed it, denied it, cursed it, exorcised it by putting a stake in its’ heart. I never tried harder to become the man with the briefcase. Read the New York Times. Glanced at the Wall Street Journal. Personified cool, like Miles Davis and Frank Sinatra. Be suave like Tom Cruise. Be a sophisticate like Denzel Washington. Observe how the regular people act at singles clubs and parties. Act like a businessman. “Good morning sir – pleased to meet you. Here is my card. Let’s negotiate the deal.” Man with a briefcase. Man with a position. Man with a condo. Man with a real Ferrari in his driveway. Bring him into a social circle and he’ll astound you with his facts and figures. Man who knows leaders of

Ghana and Greece. Man who knows Troy Aikman’s passing percentage. Man who knows the exact number of games Cal Ripkin played. He’s the foremost expert on relationships. Go ask him. One thing’s for certain – he’s not autistic. Ain’t no echolalia from this man! I tried to act like the man with the briefcase. Took on intellect and coolness. Raised hand in classroom – decorated language with sophisticated tongue. Impress friends with my knowledge of restaurants, art, movies, books, and sports. Goal: to become multi-cultural man. Bury autism layers. Don’t reveal anything. Deny, my past. Always remember to be phony and plastic. Don’t be true to yourself. The man with the briefcase would do it that way. One thing’s for certain – he’s not autistic. Doesn’t need time for Wopner at 6:30 like Rainman. I was slowly dying. There were days I truly wanted to end it all. If any days were good, I didn’t deserve it. I shouldn’t be happy. Autism teaches you that – because it’s a life sentence. In my jail, the nights were always cold, dark, and lonely. Relationships were going nowhere. By the time I hit my late twenties, I had enough of the carnage, the hate, and the self-pity. Perhaps there were autistic people who pretty much went what I went through. Instead of absorbing, let me give – let me share – let me help others who were stuck in their own darkness. Fast forward to ’96. Clinton in White House. Chicago Bulls rule NBA. Independence Day in the cinema. WWW Dot Com universal language. Man offers experience and help to parents. Man seeking to guide and teach others. Today I write this to all my autistic friends to say, “Yes, I have been there. Did that. My story is your neighbor’s story. Our story is Temple Grandin’s and Donna Williams’. It includes the four year old who is about to be diagnosed with autism. It’s all about us.” We’ve all had that awkward moment. From that heartbreaking dating experience to that personal rejection. It hurts. It stinks big time. We want to love, cherish, heal, and champion our partners. We can do these things. I know we ca! People, though, just won’t give us that second look because we are/or were autistic. I said goodbye to the man with the briefcase a long time o. I have my own life to worry about now. Facing up to myself is indeed rather scary. I don’t know where this will lead me. I still feel quite alone. I feel practically naked that I revealed so much. Every person I tell constitutes great risk for me. Will they accept me, hug and embrace me, or will they run away from me – afraid of what I was. I ask myself in the realm of relationships: is this an act of courage – or blind faith? Mel Gibson’s “Wallace” character in Braveheart said, “Every man ides, but not every man truly lives.” If that’s the case, let me truly live. To work, to play, to engage in a conversation with a friend, to go off to faraway places, to share a pizza with someone special. I can do that, you can do that. As a matter of fact, we can all do that.

******* Volume IV 1996 (p. 9) Angela Rose Barricklow BOOKS Books, books, they come in all colors and sizes. Drama can make you cry, or warmly touch your heart. Comedy can make you laugh ‘til your blue! Adventure can bring to life your wildest dreams.

Horror can make you jump out of your skin in fright! Books take you to new worlds, with new people and places.

Volume IV 1996 (p. 12) I Can’t Concentrate By David Miedzianik th

Well it’s just turned 7pm on July 30 , 1996 I’ve just been watching TV. These days I get the news and that off of the TV or radio These days I very rarely ever get the news from reading newspapers. My concentration has never been good. I think it’s also getting worse. Not being able to concentrate can sometimes can be a curse. Poor concentration sometimes makes a mess of my verse. I can’t concentrate very well these days. I keep on finding my attention fading away. People have said I’m lazy. Well maybe this is true. Although they might be lazy if they had all these pills to chew. I think the medication I’m on makes me not want to do much. I think since I’ve lived by myself, my mind’s not been on a lot. In some ways I’ve got used to living by myself. In other ways I’ve not. My concentration also goes when the weather’s hot. I can’t concentrate very well these days. I keep on finding my attention fading away. Someone told me that what I write shows my mixed up mind. What I write isn’t much more mixed up than other poetry. That doesn’t matter, as it’s that kind of art form. Yes, I reckon poetry is an art form of mixed-up thoughts sometimes. Well, who’s bothered as long as it rhymes? I think my concentration is bad. As there’s never that much reward for me ever trying. Anyway, Rotherham is a run-down town, where folks aren’t buying. I can’t concentrate very well these days. I keep on finding my attention fading away.

I think that’s right. If you’re autistic there’s never that much reward for ever trying. I remember when I used to try and play guitar. I used to sit there for hours a day strumming away. Even so no one would ever practice the guitar with me. This used to really annoy me, as I tried hard with the guitar then. I’ve had luck writing, as that doesn’t depend on people so much. If you’re autistic this will hamper you with most things you do. I can’t concentrate very well these days. I keep on finding my attention fading away. Yes, most things you do depend on people. It’s no good doing things that depend on people, being autistic. I get on with some people not very good. Others I get on with quite well. When I’m not going to get on well with someone, I can’t always tell. Sometimes I can relate better to my cat. A cat is a good thing to have around, now that I live by myself. Sometimes I don’t know what’d give my concentration some help. I can’t concentrate very well these days. I keep on finding my attention fading away. ******* Volume I 1997 (p. 12 ) How I See the World by Angela Barricklow I see the world in a different way; most see rocks and sticks, but I see tall trees as homes for the animals, and rocks as shields for the tiny ants. I gather the bark of trees and spread it on the grass so birds can build a sturdy nest. I enjoy listening to the birds sing their spring time song. Most folks sleep in and snore a boring song. I hope someday everyone will see the world my way. ******* Volume I 1997 (Back Page)

WE ARE RESPONSIBLE by Ina Hughes Charlotte, NC We are responsible for the children who put chocolate fingers everywhere,

who like to be tickled, who stomp in puddles and ruin their pants, who sneaks Popsicles before supper, who erase holes in math workbooks, who can never find their shoes. And we are responsible for those who stare at photographers from behind barbed wire, who can’t bound down the street in a new pair of sneakers, who never “counted potatoes” who are born in places we wouldn’t be caught dead, who never got to the circus, who live in an X-rated world. We are responsible for children who give us sticky kisses and fistfuls of dandelions, who sleep with the dog and bury goldfish, who hug us in a hurry and forget their lunch money, who cover themselves with Band-Aids and sing off-key, who squeeze toothpaste all over the sink, who slurp their soup. And we are responsible for those who never get dessert, who have no safe blanket to drag behind them, who watch their parents watch them die, who can’t find bread to steal, who don’t have any rooms to clean up, whose pictures aren’t on anybody’s dresser, whose monsters are real. We are responsible for children who spend all their allowance before Tuesday, who throw tantrums in the grocery store and pick at their food, who like ghost stories, who shove dirty clothes under the bed, and never rinse the tub, who get visits from the tooth fairy,

who don’t like to be kissed in front of the car pool, who squirm in church and scream in the phone, whose tears we sometimes laugh at and whose smiles can make up cry. And we are responsible for those whose nightmares come in the daytime, who will eat anything, who have never seen a dentist, who aren’t spoiled by anybody, who go to bed hungry and cry themselves to sleep, who live and move but have no being We are responsible for children who want to be carried, and for those who must. For those we never give up on, and for those who don’t get a second chance. For those we smother.... and for those who will grab the hand of anybody kind enough to offer it. ******* Volume II 1997 (p. 14) The Inner Light By Sue Norris I saw my inner light when I was seen darkly. I found joy in grim things from the nothings which became everythings filling my heart with love. When I was looking empty I had the most glowing light which is something given, given by the inner light soul me where God shines the most. I rest, play and work surrounded by the inner light.

*******

Volume II 1997 (p. 15) Every Little Rock By Angela Barricklow Every little rock I see is a mystery to me, was it flying ‘round in space, or come froma big earthquake? Every little rock I see is a mystery to me, was it at the top of a mountain, or fallen from a volcano? Every little rock I see is a mystery to me. *******

Volume III 1997 (p. 10) Miracles Don’t Happen By David C. Miedzianik

One day I said to my mum “I think I’m going to make it now” or something like that. I said this after, I’d been writing off, to some United States radio stations, about some songs. I used to write to these, radio stations a lot, asking them to do, songs for autism. My mum turned round, and said, “miracles don’t happen”. In those days, I used to think if I wrote off enough, I’d drop lucky in the end. Well through the years, I have had bits of luck writing off to places. Although I’ve never had anything that’s ever got me off of the sick pay list. After writing My Autobiography I though to myself “Oh now I’ll get on”. Although as more and more years go by, I feel that my mum was right, and I was wrong. Well anyway what does fame matter? As long as I live my life, and get along. Miracles don’t happen, that seems to be true. Although knowing this makes it hard for me to know what to do. This weekend I’ve been phoning people up from the adverts I’ve put in music papers. I keep on hoping, that these people will do me songs. I sometimes get sick and tired of seeing what people can be like. Certainly if you’re autistic, most of the time you get the dirty end of the stick. In England when you ask for anything, the answer is nearly always no. They ought to call England, No, instead of England. No to playing my guitar, no to my poems, no to getting dates, I’m fed-up with the place. I don’t know if its imagination or what, but people in the United States seem to say yes more. What with being autistic, it didn’t take me long to learn the score. When you are autistic, life is mostly a bore. Miracles don’t happen, that seems to be true. Although knowing this makes it hard for me to know what to do.

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Well it’s the 5 May, 1997, which makes it Bank Holiday Monday today. So there’s no coffee morning down at Rotherham Parish Church today. I think some people who go in there think miracles still happen. As for me. I’m like my pal Peter, I just go anywhere where there’s a cheap coffee. Anyway I’ve had so many knocks in life, that I don’t have much patience for this kind of talk. Although Rotherham Parish Church is I think about 1,000 years old. On winter days, it’s good to get in there away from the cold. Mind you I think the cheapest coffee is at the Mind Drop in center of town. I must admit that I don’t think miracles or anything happens being stuck here in the house. Although life sometimes feels better when I’m getting out and about. Miracles don’t happen, that seems to be true. Although knowing this makes it hard for me to know what to do. ******* Volume IV 1997 (p. 11) Poem by Raphel Llorens at age 12 10 August 1994 The best book is the book that has never been written… The best book is the book that has never been read… The best words are the words that have never been said… The best words are the words that have never been heard… The best pictures and paintings come from within… Locked away and only one person may see what her or she has locked away in their inner world… The world within is a world that controls thoughts, ideas, feelings, memorable moments, of dreams gone by, nightmares, a world of laughter, of sadness, anger, loneliness, of adventure beyond your wildest dreams… A world of love and hate and of between… A world that was here long before time ever existed… And world that will never die… A world that will live forever and ever… Not even death will harm a person’s soul… The only inhabitants of the inner world… A world so indescribable that it would take a lifetime to write and yet you would’ve hardly even start… It’s so indescribable that I couldn’t start. The inner world has no starting point at all It in itself is infinity and infinity is it. It is the hardest maze and the best book or story or the biggest puzzle… See you next time. *******

Volume I 1998 (p. 14-17) SEPARATE BUT NOT EQUAL An essay by Jasmine Lee O’Neill We live in a haunting world on the insides of ourselves. We are separate, but not equal. Autism is not a disease. It is a gift only we who live inside autistic spheres can understand. Because of profound difference of behavior, autistic children become cursed outcasts. The vast outside doesn’t care to know them. They’re either shut away in homes for the retarded, or they’re expected to learn the ways of hostile, alien world of other humans and at least pretend to act and live the way others act and live. Some are even medicated with dangerous drugs to try to make them more so-called normal. To take away a little child’s inner home of safety is a sin of society. As an autistic child sits rocking, humming quietly, she is usually labeled many words with definitions of negativity. These words bound from the tongues of strangers who patronize because they have no time to learn, only time to judge. She is denied the respect of even a “normal” child, which is hardly much. Children aren’t much respected, and grown-ups treat them as if they’ve no right to privacy. Autistic and other unique-spirited children have even less a right to privacy and it is autistic children that need it the most. Consider the image of the young autistic miss who is gifted with extraordinary sense organs. The countless, beautiful experiences she is fed with from the enriching personal inner realm. She uses this to create little drawings with intense color and minute detail. She sees with more than eyes. She sees what others don’t. She is quite fascinated with small kitchen utensils. Her drawings are perfect paper replicas of glittering saltshakers, pepper grinders, and flatware with gleaming handles. These tiny treasures absorb her attention. Some surrounding adults may compliment her abilities to show detail and perspective. Without formal art training, she sees all the reality of the pepper grinder or flatware in her mind. Her autistic gift of an obsession for sameness is transformed into art with the precision of a photograph. Yet some surrounding adults with their know-better attitudes quite intact may come along to say, “But what art is this? Such a young child, and she’s obsessing over inanimate objects.” What business is that of anyone’s? She is joyful with things others don’t find joy in. That is the root of original thinking. It is different, not wrong. Consider the work of Pop artists of the 1960’s. Who is to say there is only one steel definition of art? If there would be no deviation from what is called traditional or acceptable, then there would never be newness. There never would burst forth ballet by Stravinsky, there would never be any poetic techniques to follow Lord Byron and Shakespeare. There would be no Dylan Thomas or Maya Angelou. There never would be Picasso, O’Keefe, Frida Kahlo, or Kandinsky to follow Michelangelo. All of these people would exist, but would never be appreciated. It’s only personal opinion, which decides either old or new is best. Many artists had or have autistic traits, or even would be considered fully autistic by present-day doctors. Autism can be a way of examining things in innovative ways. Growing up autistic, one is called many names: retarded, idiot, freak, special, strange, weirdo, daft, abnormal, nutty, a waste. Almost always, these names are derogatory. Imagine living years, carrying these and other labels on your back like a load of coal, damned to wear these words as though they be etched into your face. Imagine physicians, teachers and other professionals talking about how bad you are, or how much of a victim you are because you have autism. Time is spent trying to force you to snuff out who you are so you become what others have in mind for you to become. Not all autistic children and adults are intellectually retarded. In my opinion, many of them who test in mentally retarded ranges are not. Autism can actually be a form of genius. Some intelligence can’t be

measured on conventional tests. Brilliance can be undetected by those who are blind to it, especially if it takes an un-orthodox form. Performing with low scores on standardized IQ tests doesn’t mean someone is mentally retarded. Some brilliant people with certain types of learning disabilities have difficulties taking regular tests, or even reading. Autistic savants generally lack the skills that people around them have easily, yet the savant gift itself does of course involve intelligence. Instead of saying that the autistic brain is damaged, it would be more truthful to call it a separate phenomenon that functions differently than a non-autistic brain. Diversity is a blessing. Why should not every being be proud of who she or he is? There is something gone awry with a society that condemns an autistic child to a lifetime of never being good enough. Why must they be made to work so hard to act like others? Many Japanese are proud to be Japanese, and don’t strive to become French. A Japanese living in Paris will always look Japanese, just as an autistic person will always be autistic. If there is an incident of an autistic child being cured, then that child wasn’t purely autistic in the first place. Some characteristics of autism can be masked over time, but I consider this a covering over of the truth to suit others, unless it happens naturally. Autism is usually innate, even if it doesn’t show up until some months or two years after birth. In studies of autistic twins, mon-zygotic (identical) twins were almost always both autistic. Dizygotic (nonidentical) twin sets contained one autistic child, and one non-autistic child. In classical autism there is a genetic factor preconceived, perhaps at the earliest stages of fertilization. There are many pluses to being autistic, which are ignored or not recognized by the people who are always saying how horrible it is. The attitude of the 1960’s and the 1970’s was to consider autistics psychotic or brain-damaged, and many were put into asylums. In subtle ways, that attitude creeps into the present day mentality. The autistic child is known to be a result of organic factors, but a huge amount of professionals still strive to discover what goes wrong with development, rather than striving to discover how an unusual mind works, and using information to further appreciate various types of human beings. I suppose autism can be made horrible. Most things can be made horrible. But it can also be seen as intriguing, even beautiful. Self-abuse in autism can be caused by various issues, including a struggle to communicate, striving to shut away the outside, or inner desperation in sensing the overwhelming negative thoughts of family members. Many parents of autistic ones are nurturing. Many are not so. Attitude will hugely affect children who are born profoundly sensitive. Parental attitude will strengthen families if the special child is accepted and loved. To learn autistic ways will be an education for parents. To bombard the child with rigid non-acceptance and demands that she or he “conform” or “change” or “behave” or “speak” or “act normal” is to tell the child with deep intentions that she or he is inferior. That is a grave error. If an autistic child doesn’t speak, that means not that he has no communication. Many children of autism need individual education away from mainstream class environments. The teaching must be loving and respectful. The child has power as a human being. The child will choose what he or she will or won’t learn. Also, the child has individual abilities like every child has. Autism can be quite maddeningly contradictory and unequal in terms of ability, such as “splinter skills” in savants. Autistic children show their raw emotions and their simple honesty, and that frightens others. Autistics who say what is on their mind are chastised for rudeness. The laws of etiquette of society are illogical to an autistic person. It isn’t so terrible to have an individual who seems strange and hovers aside from groups of chatting people. It’s less stressful to go your own way than to constantly fret over how to fit in. Autistic people can’t dissect ambivalent messages they receive from parents and others, such as: “Be honest” and “Be polite.” Those two, according to society’s definitions, can be contradictory. The tendency to take words literally. Problems become easier once they are understood. When the parent or parents realize that their small one is not going to grow up to be normal, then it can be an adventure to

watch how that child does grow and mature in his or her own way. Autistic children do need a lot of freedom to be themselves. In a vast world where the autistic is an alien, all surrounding humans usually expect too much from the unique person. Some people need more seclusion and a life in protection. If an individual can’t or won’t live like everyone else, she or he is shunned and condemned. Society denies the autistic person’s difficulties in social life. Autism is both special ability and disability. If an autistic person can’t work a regular job and needs financial help, no matter how intelligent or how severely affected that person is, she or he is put through a barrage of dehumanizing experiences by a government that would rather throw all disabled people away, or enclose them in hospitals. It is the right of all people, disabled or not, to live comfortably. A government that ignores the homeless also turns eyes from disabled. Many people seem to want to watch an autistic person suffer through a job he or she can’t handle, and become overwhelmed by lights, sounds, smells and unpredictable co-workers. To say the autistic person must change if he is overwhelmed by assaults to his senses is preposterous. Perhaps instead, he needs a simple, peaceful life with a loving cocoon of friends or family. He is entitled to happiness. …to be continued in Volume II of the 1998 Maap. ******* Volume II 1998 (p. 2-3) This letter was written by Jennifer Overton. It is soon to be aired on Canadian Broadcasting Corporation Radio’s national morning program “This Morning”. Jennifer Overton is a Halifax, Nova Scotia actor and writer. She also teaches Drama at Mount Saint Vincent University. She is mother to a five year old high-functioning autistic boy. Last night I had a dream. I dreamed I was driving along a winding coastal road. All of a sudden a beautiful boy dressed in black and carrying a violin case crossed the road in front of me, causing me to stop. I asked him where he was going, and if I could give him a lift. He recited his address, an address I’d never heard, and got in the back seat. I looked in the rearview mirror and a wave of panic rose in me at the sight of his composed angelic face, staring straight ahead. In spite of my unease, I knew that I had to help him find his way home. I began driving. Searching. I woke up, my heart racing. My son. My beautiful son: Tomorrow is your fifth birthday. My big boy. My child. Five years old! Dad and I are so very proud of you. We are madly in love with you, and we wouldn’t want you to be any different than you are. You are one terrific kid. Very special. And it was exactly one year ago today that you were diagnosed autistic. Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup, it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong. As much as we love you, it’s been a very difficult year for me and Dad. Who can prepare for such a thing? It has been a year filled with tears, grief, numbness, panic, desperation, fear, love, determination, and anger. A lot of anger. Anger at a family doctor who repeatedly dismissed my concerns about your development; anger at a medical system that put us on fourteen month long waiting lists, and after

diagnosing you, ushered us out the door with nothing more than a wave and a “good luck”; anger that your neurological disorder is shrouded in mystery and stigma and the medical community offers no treatment. I’m angry that I had to spend months reading, researching, desperately looking for information on how to help you with NO ONE to guide me; I wish we lived closer to my family; I wish there was something or someone to blame for this; I feel anger toward friends who have effortlessly developing children and still dare to complain; I’m angry at having been given this huge responsibility; Angry because I can never rest!’ and yes, I’m angry at you for not giving me back things like hugs and kissesmy dear, it’s very hard to keep giving when I don’t get a lot back in return. Please try to understand. I know you can’t help it, but that doesn’t make it easier. But mostly, I’m angry at myself. Angry and guilty for not having recognized the signs earlier, because early diagnosis and intervention have proven to increase chances of full integration into society. I wish I hadn’t hushed my concerns. I’m sorry. I’m so sorry. For not listening to myself. And for not listening to what you were telling me. And when you were diagnosed, I’m sorry for being sad. I want you to know that I am not sad about you, or that you are my son. Never. It’s the world: I’m worried about you in this world. Autism. It conjures images of a solitary, mute, rocking child. That is not you; it never was. But when I think back, and look at your baby book, I recognize what I now know to be the early signs. You screamed at the sound of tin foil being ripped. You stiffened when I held you. Your eye contact was not good. Instead of pushing toy cars around the living room, you turned them over and spun the wheels. Numbers, letters, and shapes were your favorite playthings. At barely two years of age you pointed to a small eight-sided window and said, “octagon”. Before the age of three you were spelling words with blocks. I recall being in the car and hearing you mutter, “three, one, eighteen. That spells car.” It took me a while to figure out that what you had done was assign the letters of the alphabet numbers in your head, and were spelling words with the assigned numbers. And your memory. Uncanny. Eerie. You sing songs after hearing them once. You remember where you dropped an elastic three years ago. You remember the minutest detail, and forget nothing. And yet you show little interest in playing with other children. Kids are loud; they move around a lot; they’re unpredictable. Not only must it be an assault to your oversensitive senses, but you don’t know the rules to that game; the steps to that dance. You don’t know how to make a friend. You don’t know how to play. Sometimes your literal mind offers up funny, poetic insights. “Mom, the scissors are clapping.” “Mom, can you put your headache away?” Birds dance in the air, tummies cry, and “the gate is broke-it has not money in its pockets.” Dad and I celebrate your uniqueness. But will the world? Will the kids in school call you a computer with no feelings? A robot, to be turned on in the morning and off at night? Will you ever be invited to a sleepover? Will you learn to be a friend? Will you ever hug me and say, “I love you Mom.” On good days I have faith that the world will be gentle. On bad days I just want to hold you in my arms and shelter you. My mysterious child in black, what is the road you’re walking down? And where are you bound? Tomorrow you turn five. We are so very proud of you. You are working hard to learn the life skills you are going to need. We love you. And we will do everything in our power to help you reach your full potential and be the happiest person you can be. And while we’re busy teaching you the ways of this world, you can teach us a lesson or two about love, patience, commitment, and beauty. OK? Happy Birthday son. And thanks for choosing our road to walk across. Love, Mom *******

Volume II 1998 (p. 8-10) The following is a continuation of the essay by Jasmine O’Neill which was printed in the Volume I, 1998 newsletter. We regret that we mistyped the title of this story in Volume I. In that same segment, we also mistyped the second sentence. It should have read, “We are separate, but equal.” We apologize to Jasmine for our oversight. SEPARATE BUT EQUAL by Jasmine Lee O’Neill Part II Some people with Autism struggle a lonely, poor life, not assisted by the groups which vow to assist. There are people living in all nations who just can’t cope with the way the rest live. So they need their own tailored lives. They have a right to choose their lives, or to be sheltered by others who know and understand them. It seems those whose parents aren’t extremely rich are doomed because nobody else cares. Money has become a weapon to powerfully wield or to deny rights to those who haven’t much. If they can’t fight for themselves, who will fight for them? Autism is not the hell. The hell comes from a lifetime of outsiders who try to force their customs and ideas upon the disabled person, as if to point out that the disabled person has no ideas of her own. Society views autistic people as freaks who are less than the rest, who aren’t entitled to what the rest are entitled to. Autistic people are thrown away in mind and body, or they are pitied. Those who think they know say how dreadful it must be to have Autism. Not all special people are happy, but not all are unhappy. To feel encapsulated in your own inner home is a sanctum out of chaos. Autism’s enclosed world isn’t an automatic prison. It can also be made into a haven. To control this haven, and include it in your own strengths is a lovely experience. Emotional instabilities can come about from being tormented because you’re very unusual, but there are also people who have emotional problems and aren’t at all autistic. Instead of trying to make the autistic person acceptable to others in order to escape the torments, why not reprimand the tormentors? People of Autism are judged more than others. They tend to be a puzzle, and their contradictory characteristics need to be understood. Everyone, especially health professionals and teachers, should have some idea what Autism really is, not just know the outdated myths. Most human beings know what blind means, and Downs syndrome, so why not become better educated on Autism? Autism is very complicated, and it does affect all aspects of a person, so it may be difficult to understand, but that’s not a sufficient excuse for an educated human to know almost nothing about it. Individuals whose careers are people-oriented, such as doctors, clergy, and judges, should at least have a bit of understanding of the autistic mind. One never knows when one will come across an autistic person. Kind understanding will lessen harm to both the autistic person and to others involved with him or her. General people don’t even know usually that an autistic person can perhaps drive a car, or that being severely autistic isn’t synonymous with being stupid. Many severely autistic people have areas of able or extraordinary gifts and functions. One person can be both “high-functioning” and “low-functioning”. These two terms are often mis-used, and “able Autism” is often mis-understood. An autistic who speaks can be severely affected by other aspects of the condition. And an autistic who doesn’t talk can be highly intelligent. This is proven by many examples of non-verbal people who suddenly have access to other forms of communication, such as Sign, or writing, or Facilitated Communication. Many of them begin to pour forth lovely, original language, and poems on complex topics. This point is also evidenced by the fact that the author of this essay does not speak. There is too much emphasis on bringing children OUT of Autism. Rather, try to discover the

mysteries of living IN Autism. What is right for one human isn’t always right for another, so it’s quite important to get to know intimately the autistic one in your family. It is very wrong to guess about feelings and thoughts of one who doesn’t communicate as fully as someone else. The autistic one has feelings (sometimes passionate), and desires, and fears, and questions, as others have. There probably are even more of those that have others, since the autistic is usually quite puzzled or astounded by the actions of the people around her or him. To appreciate autistic qualities in somebody is to grow closer to that person through gentle acceptance. To show interest in how that person experiences and thinks is to acknowledge that being as a precious individual. This is what all special people need. If parents praise their so-called normal children for wee tasks and discoveries, why can’t they also show excitement for the autistic child, who despite isolation, is also quite sensitive, and instantly knows when he isn’t highly thought of? Parents should be proud because there is a distinct personality in each autistic person. Take pride in the child for who he or she is truly is, rather than only when he or she performs as others dictate. Some people just don’t have a burning to be like others. To provide an autistic child with a structured education and a secure, loving home will make him feel free to be himself. Then he will understand in his own way that he is cared for, loved, appreciated. Autistics will be on the outskirts always in some way. Many of these shy, sensitive souls like living within themselves. In the examples of autistic artists, they naturally have the sensory experiences necessary to create rich, creative, original pieces in music, painting, sculpture, and poetry. Creativity is evident in many forms. It is not defined by narrow terms. To live in touch with your deepest part is also a spiritual happening. It is also a characteristic of Autism that is very lovely. It is wonderful to feel safe in your inside-you home. That security is real, and it provides fortitude. When adversity threatens, the strength from within works to help focus and get through the storm. Many autistic people are very strong-willed, as well as very honest. High intelligence is often manifest in single-minded focus. Autistic people most likely have intelligence that isn’t tapped. All of that can work with a person in unhappy situations. It’s not a crime for an autistic person not to comprehend the other world outside. Authority tries to convert the autistic one into what others are. At the core, that’s impossible, since Autism is a literal brain difference. What is worse is authority trying to shame the autistic one into making him dislike himself. That is a form of abuse. Authority needs to reform itself into believing that people will be as they are, and that difference can be neat. Any self-abusive or clearly negative aspects of Autism can be worked through, as long as the rest is celebrated. There is actually much more good than bad. Plus, the definition of good and bad is an opinion. Consider much worse negative characteristics of other people such as rapists or murderers. Think of Hitler who exemplified qualities of evil and pure hatred. An autistic isn’t trying to be a source of anguish to anyone. Even when an autistic child or grown up is in the center of a wild tantrum, she is not being evil. Many texts on Autism, as well as some parent and therapist reports, speak of these children as though they are plagues whose purpose is to destroy their families’ lives. That attitude, not the phenomenon of Autism, is destructive. Throughout eras of history, autistic souls were treated as though they were hideously evil. Even in the present time, some are still existing, forsaken in institutions where vicious experiments are done upon them, and this is known and hidden by the governments of so-called civilized nations. The clusters of autistic characteristics of behaviour are indeed unusual and do stand out. I, as a girl with Autism, prefer to view these as my own badge of individuality. I don’t care what others think. I don’t set about to harm anybody. If others have a problem with the real me, then I refuse to compromise myself or lessen myself

to please them. They’re not going to change to please me. Why should I change to please them? Children are not born to please parents. Neither are they born to fulfill parents’ un-fulfilled dreams. Children aren’t projections of their families. In Autism, people complain of the child as afflicted and bringing shame to the family. It’s seen as a tragedy that the child will never be what the parents thought he or she would be. Autism is a special personality whose occurrence is nobody’s fault. In blaming the child for not being able to become what the parents couldn’t become themselves is only an excuse... Of course, it’s okay to feel sad to learn that your child is so very different, and will perhaps be unable to do what others do. But, beyond that sadness can lie new adventures. Life has taken a fresh path that wasn’t expected. Autism can be a way of challenging materialistic values where people are judged by their careers and university degrees. Autism goes beyond that. If an autistic young adult never becomes successful in an important career, so what? I’ve read of some parents who have left their guilt and rage and denial behind, and now they truly accept their special child and even have joyful relationships with them. Autism can be seen as either a curse or a blessing. It is most crucial that the autistic one himself or herself feel content. People who are deaf and communicate in Sign often feel a special identity with one another. The deaf have a distinct culture and language, separate but equal to the rest. Many have created communities of living. They are proof that speech isn’t necessarily the best form of language. Non-verbal autistic people can find their own type of communication which suits them best. They need freedom to choose and have control over some things in their lives. As in the culture of the deaf, unique lifestyle is celebrated. This can work with autistic people. There are less autistic people than deaf people, yet they have as much right to feel joyous in life and to live free of endless ridicule. To claim many are too retarded to comprehend or desire this is a miserable excuse and a lie. They do live in their own special worlds, and those inner islands can be rich and exciting. Nobody on the outside has the right to judge another’s peaceful way of life as wrong. I’m talking of a special type of person cast out only for being different. People need to look more than with only eyes. They must feel with hearts, not only fingers. They must take the time to grow close to the autistic one so only then can they decide if that special person’s life is so terrible it must be altered. Others could learn much from an autistic person’s innocent, pure way of seeing things. I believe that Autism is an unspoilt version of humanity, full of true un-refined emotions and so many mysteries. If people can accept mysteries in their religions, why can’t they accept mysteries present in one another? If they can accept people of different colours and nations, then hopefully they can accept autistic people as separate but equal. *******

Volume II 1998 (p. 18) IMAGINATION by Angela Rose Barricklow Cats in top hats, Hares combing their hair, Bees as boxers, Skunk train conductors Ballerina buffaloes and more!

Just step right up and get your ticket to the most crazy place on Earth, the imagination. Oh, and just one more thing, don’t mind the monkey, she’s only asking for your tickets. ******* Volume II 1998 (p. 21) Gather Stars For Your Children is available in CD or cassette. These songs, written and performed by Jeanne Lyons, are individuals with social and speech challenges and are designed to enhance social skills and foster a welcoming attitude. When I listened to this tape, I laughed and I cried. My two ffavorite songs on the tape are “Perseveration Station” and “Personal Space Invader.” I congratulate Jeanne Lyons on her creativity, ingenuity and sensitivity. To order your copy or copies, write to Jeanne Lyons, P.O. Box 72857, Marietta, GA 30007. ******* Volume III 1998 (p. 3-4) By Carol Rudd Bright Eyes, Promising Eyes For Sean Bright eyes look back at me as I hold you in my heart, life’s sweet innocent love, God’s precious gift. So perfect, so beautiful, the light of my life. Surely the world will embrace you and all your promise. Surely one day you will walk amongst the great ones. Now your eyes hardly see me any more, Their brightness has gone dim. Your somewhere far away. Why can’t you hear me calling to you? Where have you gone? Come back! You must come back! The world is waiting to embrace you. Your eyes must see the world before it’s too late. I must intrude my precious. We will struggle, we will win with each passing day.

You need to have the brightness in your eyes To walk amongst the great ones, to be the best of men. You see me more and more with each passing day. Now your eyes see the world My precious child. Your bright eyes look back at me and smile. I know in my heart you will walk amongst the great ones, you will be the best of men. ******** Volume III 1998 (p. 8) A poem… Melody She’s pretty to look at, But ugly to talk with, And every now-and-then She’s sometimes… She’s long of her hair, But short of regard, And every now-and-then She’s sometimes… She’s a girl of her word, But never word she keeps, And every now-and –then She’s me… Mr. M.A.L ****** Volume III 1998 (p. 11-12) John’s attempt at levity. By John Clabaugh rd

I have noticed that when I follow the biblical direction, to be led by still waters (this is from the 23 Psalm… The Lord is my Sheperd, I shall not be in want. He makes me lie down in green pastures,

He leads me beside quiet waters, He restores my soul.) This is when I see in colors. This has happened to me several times. It seems sometimes when I receive quiet time by the still waters, I find myself, usually alone, walking in silence near a stream, brook, or small river. The colors and sounds alert me that I am in a Holy place, I am usually surprised because I didn’t necessarily come to this place thinking I needed to go talk to God

Musical Colours Tasting Shapes I find colors by the running stream like stained glass windows from in a dream the green, and blue, are there to see with yellow and red washing over me I stand or lay and then I pray ******* Volume III 1998 (p. 14-15) A Piano Concert for Autistic Children “Musical Moments” given by Matthias Fischer In autumn 1997, the Foyer Universitaire of Geneva has asked me to give a little recital of piano. I have played Bach, Handel,, Mozart, Haydn, and finally Schubert. Everybody was delighted. As a reward, I have asked if I could do money rising for the autistic children, because I did not want anything for myself. The students of the University and some other people were unfortunately not very rich, so it gave only 180.-Swiss Franks. But in 1998, I have given another little recital on the 26 of April in Fribourg. On the program was also printed: “collect for the autistic children”. The more elderly people were fortunately richer, so it gave us 370.-Swiss franks. Everybody was delighted as well. On the 10 of May of this year, we had our general assembly and picnic of the Swiss parents association and the children were there too. I played for the mothers this time, because it was mother’s day. I have tried to play on an old piano and it was absolutely revolting. The sound of the piano was very good but two keys got stuck every time I touched them. I was very annoyed because of the mothers who have been waiting for that little recital for a long time so, I did not want them to go back home disappointed. Fortunately, I have discovered the problem during the warming up, because otherwise the mothers would have been surprised every time I stopped and started swearing. But I have managed to play something though. During the recital my mother stayed next to the piano while I was playing and she lifted up the keys that stayed stuck as soon as she could. As I played some music very fast she had a hard job doing this. Everything went all right. The mothers were very touched and congratulated me and thanked me because I made it although the piano had a problem. That was a big step forward for me because a few years ago, I would have refused to play at all and the mothers

would have been disappointed. From that recital I have learned that, as a pianist, you have to cope with any piano that is under your hand as good as you can, even with a piano that has key problems. It is rare that a piano is impossible to be played on, there is always a solution, but I am sure a professional would have slammed the door and left. So you see, I do things for other autistic children because I was lucky to be able to do so. Many greetings to all readers of MAAP from Matthias Fischer. ******** Volume IV 1998 (p. 5) RE: Mark Bishop (Autistic Pilot) An example of problems we often had to surmount happened on the day of Mark’s first solo at Denham Airfield, where he had done all of his flying training and ground school over the previous two years. It was 10 a.m., he was lined up at the end of the runway, engine running and ready to go, when the “Control Tower” refused him permission to take off. No warning, no reasons given. Mark’s instructor Tony, had such an argument with Denham’s owner (He is no longer C.F.I.). Anyway, we got on the phone to Elstree Airport (15 miles away), who said “no problem” to Mark’s solo, but on arrival (phone calls had been made) they too changed their minds and refused permission, no reason given or apologies. By this time it was 2 p.m. We were on our way home when in desperation and anger we went to Hatfield Airport in Hertforshire (another 35 miles), where we lied about his autism. The Control Tower gave us a twenty minute slot at 4:55 p.m. His instructor, Tony Ryan, only had time to taxi out with Mark to the take-off point at the end of the runway and on letting him go, was obliged to “jog” the ¾ mile back to the dispersal area for Mark’s return. Because airliners (which were taking off and landing all the time) have a much larger circuit and the airfield and local area were unknown to Mark, Tony had to quickly write down vector headings and times for him to follow, which I thought was quite an act of faith on his part and thankgoodness I was not aware of at the time, thinking that Mark had been to Hatfield Airport before! Watching from the Tower with binoculars I remember the astounded feeling inside me as Mark flew past on his own. Everything had been such a rush, especially my heart, as he disappeared slowly into the evening haze. Mark was out of sight for the longest five minutes of my life, until we spotted him on the approach about two miles out. He made a perfect landing in front of an RAF C130 awaiting his turn to take-off after Mark cleared the runway, on completion of an eleven minute “First Solo.” On his arrival after taxiing to the dispersal, everyone stood back and allowed me to be the first to congratulate Mark alone. On shutdown, I pulled open his door to be greeted by, “Sorry Steve, have you been waiting long?” .... What can I say? Stephen Bishop (Mark’s father) ******** Volume IV 1998 (p. 18) He has artful pains and moods He is blind to where he stood Time will tell his older grace

When those around him see his face He has struggles with his whims While the others baulk and grin Tempest strains, they prod him so No one told him where to go And so he seeks the answers and He searches for the medicine man No one seems to have a cure So it must suffice to release his fear by Gregory Gnau ******* Volume I 1999 (p. 3-4) It’s been quite an interesting year for us. As Guille turned 15 and started attending a large public high school with a population of over 2300 students, as his parents we reached new heights of advocacy in attempting to get his individualized education plan to address his social-emotional needs. After being turned down by county mental health, who disqualified him from counseling services because he was “benefiting from his education,” we sought an independent psychological assessment from a local psychologist with experience and expertise in autism and Asperger syndrome. He confirmed our position that Guille needs to be taught social skills explicitly by a counselor who can help him process his conflicting feelings about himself and his difficulty “fitting in” and making friends. Meanwhile, we have been excited and inspired by the work of Tony Attwood, whose book Asperger’s Syndrome: A Guide for Parents and Professionals is full of practical ideas. (I flew to Portland in December to hear him speak at a Future Horizons workshop on social skills, and he is a great speaker!) So when Guille’s IEP Team was faced with the task of writing social-emotional goals and objectives, and the school personnel admitted that they really didn’t know how we rose to the occasion and wrote them ourselves. The team accepted our goals and objectives, agreed to psychological services, and the last hurdle is to decide on the service provider (we are insisting that it be someone with experience and expertise in Asperger syndrome and autism). During the last six months of negotiation for services, we have been paying privately for counseling for Guille, and for the most part, he appreciates having “someone to talk to other than my parents” about feelings and social interactions. We’re hoping to narrow down the focus to a few specific friendship skills, and we’re hoping that he continues to cooperate when the therapy starts to get challenging (like a typical teenager, he suspects and resents adults who try to tell him how to run his life!) The other exciting development has been Guille’s cartooning. Animation and cartooning have been a strong interest of his for quite a few years, but when his high school resource teacher suggested that he try to get one of his cartoons published in the school newspaper, Guille became suddenly inspired and prolific. So far, he has completed 37 cartoons (since he started school in August) and two of them have been published in the quarterly school newspaper. His goal for 1999 is to complete 100. The most amazing thing to me is the content of the cartoons; they all depict social interactions between teenagers in high school, highlighting moments of awkwardness, rebellion, insecurity, and other typical emotions. The situations seem to mirror what he’s observing, thinking about and/or struggling to understand. The

irony is that he is able to observe and comment on situations that are so very difficult for him to actually participate in. I am sharing the social-emotional goals we wrote, in hopes it might be useful to other parents and professionals when facing the same task. The new Maap newsletter format is very spiffy! Have a great new year! Best Regards Denise and Bob Gomez ****** Volume I 1999 (p. 15-16)

Space Station Sam by David C. Miedzianik The year is 2070, and Space Station Sam rockets around. Some space stations are so big that they’re like towns. The people that run these stations are always glad to see Sam. Sam brings them fuel and oxygen, and tries to make things go to plan. Computer mega-chips run the life support systems in these space stations. In these space stations, are people from just about every nation. Computers talk to the people on board, making sure life doesn’t get too hard. People on board grow their own food, and do experiments in test tubes . Space Station Sam is everyone’s man. Sam tries to make things go to plan. Sam looks after radio telescopes that are searching space. He sometimes looks after infrared telescopes too. The space stations get money every time they find something out there new. Sam thinks that one day the Universe will fall into a black hole. So to find some way of stopping this is one of his goals.

Although sometimes he’s not bothered, as long as this doesn’t happen before he gets old. Now Sam goes to inspect a space station’s metal walls that helps keep out the cold. Some of these stations, have been up there quite a bit, and they too, are getting old. Space Station Sam is everyone’s man. Sam tries to make things go to plan. Science has made loads of progress in these last few years, he thinks to himself. Now people aren’t getting so old so quick. Also some of the diseases that have plagued mankind are now getting licked. There are now just about too many people to fit onto the Earth. So everyone’s now going into space for all they’re worth, Although some think that being in space is a curse. After all there’s no hills and trees in space, and food that’s grown can’t go to waste. Sometimes even Sam wonders why he’s floating around in such a place.

Space Stations Sam is everyone’s man. Sam likes to make things go to plan. Soon Sam will travel to Mars. Soon they’ll be also trying to go to the stars. Sam pours a drink that’s supposed to make his thoughts better. Sam looks down at The Earth to see how’s the weather. Sam’s computer now tells him that his shift is over. All he’s done today has been logged onto his machine. Sam’s now in his space station cabin, and the lights are now going dim. Out there is space, there is no proper day and night to bother him. Space Station Sam is everyone’s man. Sam tries to make things go to plan. ****** Volume II 1999 (p. 7) Flower Eyes By Sue Norris Flower eyes bloom, Swell, give, float, curl,

Drop on a little girl’s hand. Her eye sees God’s view, Dancing on the horizon In the noon day sun, Giving a hint of yellow haze. ******* Volume II 1999 (p. 16)

We recieved many requests for the words to the song Susan Moreno wrote and performed at our conference in April, here they are: “Reach for the Stars...Sail to Your Dreams!” Reach for the stars, my friends. Sail to your dreams! Hold on to your hope, my friends. How distant it seems. And when you set sail this day to a far away shore, Remember how special, how precious you are. When storms toss the sea of Life, and you’re losing your way, Steer your course by the knowledge you’ve gained here today. Then reach for the stars my friends...and sail to your dreams. Your hope lights the sunsets... Your prayers are it’s beams.

******** Volume III 1999 (p. 4)

The following poem is reprinted from “The Autiser”, Volume 9, No.1, 1999. “The Autiser” is the newsletterA Australia. The poem’s author, Pip Townsin, writes to us at Maap, saying, “The poem was wwhen I hit rock b happy to tell you that our situation has improved for the time being—but, aaware, life is a roller coaster ride!” Where are you now? Where are you now my beautiful son? My innocent child, so precious, so young. Overwhelmed by anxiety, frustration and fear, I yearn to ease your pain; In my wildest dreams you’re the boy next door Playing football with friends,

drawing pictures galore. Laughing, joking, talking of life, I yearn your gifts within; We could go anywhere fearless, with pride You unrelentless with how? When? Where? Why? Bonded again like mother and babe, I yearn a time gone by; Can you imagine not having to bear Provisos or judgements whispers or stares. You could inspirit us all with your charm, I yearn that you be heard; If I could just know you—but for one day My darling sweet child—taken away. My heart would stop aching, my soul be at peace, I yearn to be complete; But our reality is all to clear As I kiss your cheek and wipe my tears. You tend your obsessions, we ride the storm, I yearn strength to carry on Where have you gone my beautiful son? The face of an angel, the chosen one, Trapped in your world so distant from mine, I yearn to set you free. © Pip Townsin ******* Volume III 1999 (p. 8) MONDAY by Beth Moreno Monday I wake up in A daze and I wonder Why do I have to go through this Again? *from:The Early Years of The Maap. Page 162*

PARENTS CAN MAKE A DIFFERENCE Reprinted from Momentum, ASA Los Angeles I dreamed I stood in a studio And watched two sculptors there. The clay they used was a young child’s mind And they fashioned it with care. One was a teacher—the tools he used ere books, music and art. The other, a parent, worked with guiding hand. And a gentle, loving heart. And when at last, their task was done. They were proud of what they had wrought For the thing they had molded into the child Could neither be sold or bought. And each agreed they would have failed If each had worked alone. For behind the parent stood the school And behind the teacher, the home. Author Unknown

A thought from Susan Moreno: If I could write such lovely poetry, I would have written a poem that had thr would have been the child him/herself, whose own will to try hard completes the sculpture. ********

Volume I 2000 p. 4-5 Dear Susan, I wanted to share the attached writing about my daughter. If you feel it’s worthy of printing, please do so. We had taken our daughter to a doctor in another town who was administering Secretin. The gentleman who wrote the attached was in the doctor’s waiting room. While we didn’t—and don’t— know him , he recognized us, as he works with a mutual friend. Before we first took her to this doctor, we had asked her if she knew anyone from that town who had some knowledge of him. The person who knew of the doctor was the man who wrote this essay. He gave our friend his writing the next week, and she faxed it to us. He wanted us to see it before he would show it to anyone. I believe he wrote it for a church bulletin (he attends the same church as the doctor!). It certainly made us pause, as I remembered how frazzled I had felt in that waiting room, trying to keep my daughter from taking ornaments off their tree. Sometimes you have look back up and take a breath,

“Anonymous” **A note from the author of “Payton’s Gift”.** For some time a co-worker had been asking me to pray for a young child. She had not given me a description with the exception of her age. One day as we sat in our usual places in the cafeteria she asked me if I knew Payton’s doctor. I did, in fact it turned out that although Payton and I live nearly 50 miles apart and all the doctors in the state, we had the same doctor. A number of months had passed when I had seen Payton. Without details of what she looked like, I knew it was Payton. It was then I was inspired to write “Payton’s Gift”. Across the miles God placed two people together only for a moment, but in that short span God spoke loudly with a soft gentle voice, and now Payton and her gift have a special place in my life. This devotional is based on a true event as experienced by the author, Donald W. Carney, and his inspiration “Payton, God’s little Miracle.” PAYTON’S GIFT As I watched Payton in the doctor’s office her mother followed her around the lobby insuring the safety of her 4-year-old daughter. Payton would go from one area to the next making noises of little more than grunts and sudden small cries. Payton’s father got her attention with the Christmas tree standing in the corner. “Look Payton at the Christmas tree. “Can you say tree?” With just a little bit of imagination, I think I heard her repeat to her father, “tree.” You see this small child is different than most. Little Payton is autistic. I couldn’t help but notice as a little gold ornament covered in glitter caught her eye. She took the little round ornament in her hand without removing it from the tree and began to rub her fingers over the gold glitter. It was at that moment this little blond haired child became silent. She gazed with tremendous deep thought. The texture of the glitter across her tiny fingers, the beauty of the reflective gold color to her eyes, the perfection of the simple round ornament in her hand, the tranquility of the moment was inspiring. You know I have been there before. Stopped in silence, gazing into nothing, and just dream of the simple things that God has made. It somehow creates calmness in the soul. I don’t believe there is anything more beautiful than that, but God himself. God has gifted a child to teach and remind us of what we should already know and do. Take a quiet moment and just dream of something simple, and do it often. Then thank God for it. ******** Volume I 2000 p. 10-11 The following article is from the “Autism Society of Indiana”, Volume 2, Issue 3, Winter 1996. What Can You Learn from Autistic People? By Sara Lung You learn how great autistic people really are. Our sight, hearing, smell, taste, and touch have tremendous differences. I like to list stuff. My favorite words are conrail, bug, stuff, lots, circle, and cello. I will list stuff I like to see: road signs, neon lights, building signs, black and white television. I like to watch McMillen and Wife, RoseAnne, All My Children, I Love Lucy, and figure skating.

I love to hear cellos, violins, and band music. I love slippery, cold ice cream. I sniff stuff before I will eat it. I like to tap things. I like to watch, listen, eat, touch, and read the same things over and over. Things I do not like or hate are loud music, announcements or microphone talking, telephones, loud buzzing, florescent lights, lumpy food, large bathrooms that echo, colored sticky foods like Doritos, but I like to eat them. I act silly because I get silly and nervous. I get frustrated when my body cannot calm down. I am not retarded. I cannot look at people easily. I do not like to say hello but try anyway. Babies crying bugs me. But I feel sad that they cry. I cry because of frustration. I scream really, really well too. Things that help me calm down are swimming, showers, walking, rocking, music, and reading. I like animals, but hate drool and smelly fur or wool to touch and smell. All autistic people are different but our senses rule all our lives. I like to use Sara when I talk and write. The words I and you are not Sara. Words sometimes are hard for autistic people to understand and use like normal people use. Normal to Sara is not autistic. Learn how we like the same things you like and leave us alone. Autistic people try to act , feel, see, hear, and taste things like other people, but it is very hard. ******** Volume II 2000 p. 10 Editor’s Note: This came in my annual Christmas letter from Lee Warren. She is a wonderful, brave, single parent who lives in Illinois. Her son, Warren, is 21 and lives in a group home. She is working towards new residential alternatives for Warren and others in her area. We are not sure of the source of this poem. What You Should Know About My Child Remember that he is, first of all, my child. Let me see him smiling in his sleep And let me think how handsome he is… Not about how delayed The smile was in coming. Help me not lose sight of my son In the light of his limitations. I know that you care for my child, And that you work hard with him. I need your expertise to help him become All that he is capable of being. You need my help in understanding who he really is and in following through with things that are important. Remember though, that you go home at night And have weekends off and paid vacations. Let me have the luxury of having a vacation… Sometimes physically, sometimes emotionally,

For a day…a week… a month… Without your judging me. I will be there for him when you are long gone. I love my child with intensity That you can only imagine. If, on a given day, I am tired or cross, Listen to me; lighten my burden; But do not judge me. Celebrate with me Rejoice in who he is and who he will become. But…forgive me if, from time to time, I shed a tear for who he might have been. A Parent ******* Volume II 2000 p. 17 Editor’s Note: The following is an excerpt from a series of poems by Rachel Vivace, a 24 year old with Asperger’s and mother of a 4 year old, Matthew, with autism and whom she calls “Heaven’s Joy.” LIKE A BUTTERFLY Like a butterfly For freedom I am reaching Flapping towards the sky Although you may not see Or even hear my voice Know that I’ve no choice But I must be Like a butterfly. Stared at like wondrous piece of art, Assumed in a cocoon you cannot part, And all you see is emptiness within, And not the thoughts inside my head which spin. Although I may pass by you in the hall And talk in a monotone or parrot call Or bang or shake my head if I’m in fear, And if I speak in silence, do you hear? And though I may not recognize your face And retreat from you while wanting your embrace Know inside these walls that I still make Through self-contained, I yearn, And long, and ache.

Fragile, delicate-like china, breaks – Trapped in all the rules that this world makes But instead of letting difference divide, let’s embrace them, and let’s spread our wings and fly. *******

Volume II 2000 p. 17-19 “Somewhere Like Starbuck’s” by Dena Gitlitz I wrote “Somewhere Like Starbuck’s” when an intelligent, compassionate friend— trying to be supportive, remarked, “Why don’t you just get an easy job, like at the coffee house down the street, somewhere like Starbuck’s?” I’ve often remarked to people, when trying to explain my disability, that I would encounter the same difficulties on a job whether I was a Supreme court Justice or a Janitor. When you have a neurological disorder, there is no easy job. It seems the area affected is not intellect, but rather interpretation and subsequently, performance. I may be intellectually capable of doing the job, but my brain processes information differently. Messages get jumbled and misinterpretation of communication is an everyday experience. This usually makes for a confusing situation for all involved. Let me explain what I picture when I think of Starbuck’s… First, I picture the lights: how the light in the store would strain and hurt my eyes, causing disorientation, sometimes to the point of dizziness…how the piped-in-music would make my nervous system shaky, because sometimes I hear normal sounds as loud noises. Then I picture the hot coffee, and subsequently being preoccupied with trying not to burn myself on the machines. Individuals on the Autism Spectrum are very aware of potential dangers in their environment; sometimes they are hypervigilant. This fear is reality based; I have motor and coordination difficulties, which means I misread distance and timing. I would be scared I would spill coffee on myself or others. When I experience “sensory bombardment/overload,” I shutdown. I can no longer think. I cannot process information. “Shutdown” is not an emotional response; it is happening to me on a neurological level, similar to someone with Epilepsy or Parkinson’s. Getting angry or upset with while I am experiencing a shutdown does not make it stop, neither does “trying harder.” What works for me is constantly monitoring my status. Am I nearing overload? Well, if I’m starting to appear anxious, then I probably am. Think about how you would feel if you were in the middle of your day. In the middle of your job, in the middle of your life and your senses started “shutting off.” It is extremely frightening. Because I have an inability to automatically distinguish relevant, from irrelevant pieces of information, I need more time to process interactions and experiences. The simple task of waiting on a customer becomes challenging. Predicting a situation and thinking of customers coming through the door means people rushing towards me, wanting service, wanting me to do something. That is difficult- I can’t multi task

rapidly, if at all. Then I’d have to process what they are saying: (With a time element involved) Which cup? Which flavor? Which size? Which order? Sometimes I don’t understand the simple words people are saying to me. Words can sound like static or random noise. Sometimes I have no idea what the words mean that people are saying to me…therefore, I struggle to understand what the context of a situation is. On the surface, I may have “heard” the words people have spoken and could even repeat them back, but this does not mean that my brain processed and interpreted the information. In essence, the transmission was not “received.” In some situations I can ask, “What do you mean?” or “Can you please explain that in another way?” but when people are expecting service from me, this would create tension and problems. Please remember: I appear functional. I “look like” and I “sound like” I “get” what is going on… and sometimes, I do. To some, I may even appear more than competent and this in itself creates an even greater persistence on behalf of those who want me to “Get out and live life” or “At least take on an easy job.” I would also have the responsibility of handling money. That takes thought. People are easily upset if their money is mishandled, and customers get impatient when they are waiting. The thought of this interaction makes me want to retreat, and protect myself. The rushing, along with the multitasking, along with the sensory dangers would be incredibly anxiety producing. It is basically impossible to function in this type of situation. Think of prescription medications that come with a label stating, “Do not drive or operate heavy machinery while on this medication.” This warning is there to alert the consumer to the fact that their perception may be off and their judgment may be impaired, they may misread a situation. This is my daily experience… and my ability to communicate my experience does not change my core differences. My struggle is to balance sensory bombardment and information overload with participating in life. My brain interprets sensory stimuli differently than yours does, my brain processes experiences and situations differently than your does, my brain processes information and words differently than yours does. The seemingly simple task of selling coffee, much like everything else, is actually a complex process for the person with a neurological disorder. Because of these neurological differences, I will not work somewhere like Starbuck”s. ******** Volume III 2000 p. 4 Dear Maap, This is a reflection told from the point of view of the child about school and to his school. I don’t want to down the process of IEP’s as they are crucial, but through my experience, I have realized that some educational staff get so tied up in the theory of it all, and forget that there is a child there wanting a bit of one-on-one, and put the theory into real practice. JUST GET TO KNOW ME Fluorescent lights, too bright, blinding like the western sun Playground, chaotic, like city streets,

people run, run, run Instructions, too many, clog the system, like a paper jam I.E.P’s, Ascertainment, Level 5, who gives a damn I’m drowning here, can’t anyone see But you’re too busy worrying about”me” A pencil drops, a classmate coughs, distractions, a full scale emergency Teacher’s away? You say! Who are you? Who am I? Escalating anxiety Change desk. Changed your mind. It changed my life, what a mess No Math’s today, you say, Instead we might play? Stress! STRESS! I’m sinking here, help me please But you’re too busy worrying about the IEP’s Can’t concentrate, want time out, have to get away I ask for space, you decide I have to stay Thump the desk, clench my fists, feel like slow motion Push the desk over, kick the door, out, out from the commotion I can’t breathe, unlock my lungs, please give me the key But you’re too busy worrying about my “identity” Somebody please, please, please I’m dying here, from a new disease Overdone Ascertainment, Level 5, IEP And not enough one-on-one, just get to know me Josie Santomauro Copyright 2000 ******* Volume III 2000 p. 14 IF EVERYONE WAS LIKE ME By Kirk Langsjoen, age 17 IF EVERYONE WAS LIKE ME THEN THEY WOULD ALL SEE I DO NOT DESERVE TO BE PICKED ON OH THE NERVE.

THEY WOULD SEE I AM NICE THROUGH AND THROUGH AND THROUGH THOUGH I HAVE MY FAULTS MY HEART IS LIKE NEW. THEY WOULD SEE I AM KIND TO EVERYTHING I SEE FOR I AM SMART I AM NOT DUMB THAT’S WHAT THEY WOULD SEE. THEY WOULD SEE I AM SMART I AM BRIGHTER THAN THE SUN MY BRAIN DOES NOT FIT IN MY HEAD OUT MY EAR IT COMES. THEY WOULD SEE CREATIVITY AND ORIGINALITY TOO THEY WOULD SEE A NINTENDO FREAK IF THEY TOOK A PEEK OR TWO THEY WOULD SEE A LITTLE BOY BOTHERED BY EVERYONE OR SO IT SEEMS TO HIM THOUGH HE DOES NOT KNOW HOW TO HAVE FUN. THEY WOULD SEE A POET THE KIND YOU WOULDN’T BELIEVE THEY WOULD SEE A PERSON WHO LIKES PENGUINS IN A WAY YOU CANNOT CONCIEVE. IF EVERYONE WAS LIKE ME THEN THEY ALL WOULD SEE JUST ABOUT EVERYHTING THAT MAKES ME, ME.

******* Volume III 2000 p. 18 IS SOMEBODY THERE TO HEAR ME? By Matthias Fischer I fell desperate, feel lonely Is somebody only

There to hear me? Most peoples’ drivel It makes me shrivel And takes my breath. I only can tell you What seems my value Why can’t I pretend? So walking in silence Avoiding the violence I try to understand. I would like to lie Pretending that I Could be like you So I feel desperate, feel lonely Is somebody only There to hear me? ******* Volume IV 2000 p. 8

MISSING NIXON A commentary by Jerry Newport It’s gotten that bad. I actually miss Richard Nixon. I never voted for him and have spent most of my adult life as a Democrat. But I miss Tricky Dick. I miss his five O’clock shadow and the geeky way he insinuated his face into the upper right-hand corner of my TV set on the day of the first moon landing, to make some silly Presidential announcement, as if he could upstage Neil Armstrong. I miss his Checker’s speech and the Moscow kitchen debate. I miss the feeling that like me, Richard Nixon seemed to wonder if anyone liked him or just tolerated him because he was so productive. I miss Nixon because for all of his Kennedy-phobia, he knew, unlike some people today, that winning isn’t everything. Twice, Richard Nixon put our country above his own needs. He died a true American patriot. In 1960, albeit after hearing the riot act from President Eisenhower, Nixon did not contest massive voter fraud in Cook County, Illinois. In 1974, he resigned. He could have possibly survived an impeachment. Instead, he had the grace to resign. By the time you read this, we should have a President-elect, but after the way both candidates stimmed over the Florida race, will either have it in him to act Presidential? I hope we don’t have four years of gridlock, but I can tell you one thing. If the autistic population had run this electoral show, the problems would never have happened. If we ran the elections, there would

be uniform procedures, unambiguous ballots and no forecasts anywhere of any state’s winner until the entire nation had finished voting. That is the bottom line. The integrity of the process is more important than Bush, Gore or whether the Secretary of State of Florida can trade in her frequent flyer miles for votes. In times like this when neurotypicals get lost in their ambitions, the autistic talent for ruthless objectivity with no regard for social or political context should be allowed to come to our nation’s rescue. We may have here, a full-employment program for people with autism; in the office of every Registrar of Voters in America. After all, many of us like to do the kind of work that most people find boring and we do it right. We need to show that the most frustrating traits of autistic people can be advantages. I hope we do a better job of this in the future. Meanwhile, time is the greatest judge. For all of his mistakes, Richard Nixon will be remembered as a brilliant international statesman. And I hope that for all of our idiosyncrasies, my peers will someday be more known for the contributions we make to an orderly, just society where every vote really counts. You may contact my attorney, Ken Weinman at 310:312-1004 to book me for presentations. e-mail: [email protected] ******** Volume IV 2000 p. 20 The following poem was taken from the October 2000 PDD Network Newletter , by Stacy Hultgren.

IEP’S by Dr. Suess -Author unknown

Do you like these IEP’s I do not like these IEP’s I do not like them Jeeze Louise We test, we check We plan, we meet But nothing ever seems complete. Would you, could you Like the form? I do not like the form I see Not page 1, not 2, not 3 Another change A brand new box I think we all Have lost our rocks. Could you meet here or there? We could not meet here or there.

We cannot all fit anywhere. Not in a room Not in the hall There seems to be no space at all. Would you, could you meet again? I cannot meet again next week No lunch, no prep Please hear me speak. No, not at dusk. No, not at dawn At 4 pm I shall be gone. Could you hear while all speak out? Would you write the words they spout? I could not hear, I would not write This does not need to be a fight. Sign here, date there, Mark this, check that Beware the student’s ad-vo-cat(e). You do not like them So you say Try again! Try again! And you may. If you will let me be, I will try again You will see. Say! I almost like these IEPs I think I’ll write 6,003! And I will practice day and night Until you say “You got it right!”

******* Volume I 2001 p. 20 Here is a poem that truly embodies the theme of our conference for this year: The Road Untraveled

As I head down the path of life I see a road so bare... ‘Tis like it’s had its’ day, buy yet, Is anybody there? Its’ surface is all fragmented; Its’shoulders overgrown; Its’ ditches are but all obscured. But am I all alone? The trek along the road’s not bad, There’s trees and flowers, too; And though I have to watch my step, Just where... oh, where... are you? This road is not the one they call “Less Traveled”; dare I say ‘Twill soon be lost forever — (sigh) Is someone here today? The hours pass as I trek on Observing nature’s grace... But no one is responding... (whew!) Where is the human race? - Brian Henson copyright 2001 ******** Volume II 2001 p. 7-8 THE POWER OF ONE by Mary Phillips I am one I am one mother I have children with Autism That does at times make me feel like the only one So I reach out I talk I educate myself I grow And become more powerful I am one When it comes to the doctors Who do not listen to what I have to say When my child does not speak

Does not look Does not react I am one Who says LOOK, LISTEN, DO And they look and listen and do for my child And the power grows I am one When it comes to the school districts that do not listen Who see my child as a dollar sign Who do not think they will accomplish much in life And they expect me to lie down But I stand up And I raise my voice And I fight for my child who has no voice And I win…a victory for one And I tell other parents to do the same And the power continues to grow I am one In the school halls With the staff that educates my son And we work together as one… for the betterment of him And I speak to the other staff members And educate the educators I, as one, break down the walls of fear and ignorance And they begin to see his brilliance And they begin to open their hearts and their minds to his possibilities And they empower my child And the power resonates to others I am one In the mall In church On the street or at the restaurant When people stare When the whispers are too loud Who wonders about this child of mine And instead of folding up I open myself to them Educate them and let them know to not have fear But understanding and empathy for a child who cannot control this And the power radiates

I am one Who subjects my family to research to help others Who speaks in classrooms Who gives up time to myself To the betterment of my children To speak up To speak out To gain control of what is uncontrollable To have others do the same And the power touches others I am one Who looks to give support and get support And there are others who are one And together we are many And we share a common bond A common war A common cause And we strengthen in our numbers And I no longer feel like one I am a mother I have children with Autism And I am powerful ******* Volume II 2001 p. 12-13 A Poem by David C. Miedzianik I might as well write people about People on the radio and TV As to try and write poems about poetry. I like watching Cat and Ant and Dec. Mr. Clinton has put a Cat in my ear. Along with Ant and Dec. I watch CD UK each Saturday. I usually e-mail in. I usually do this so they can do me songs. I used to e-mail in so they could find me someone. Mr. Clinton has put a Cat in my ear.

Along with Ant and Dec. I thought if I could do them a poem They might do me one As my ears are too tone deaf to do good songs Everything I write comes out all wrong. Mr. Clinton has put a Cat in my ear. Along with Ant and Dec. I just put everything I write on the Net. As no-one else Will do my stuff. In the poetry and I keep on hoping they’ll do me songs. I keep writing to the music mags. I keep writing to the radio too. The fact that they’re not more songs Makes me feel blue. These songs never get me money Or food to chew. There’s three of these songs. Can someone else do me one? As Mr. Clinton has put an Atomic Kitten in my ear. And life without proper work is sometimes dear. I’ve three downloads of songs on my sites. I think there’s more of these. Although they’ve not been recorded. So they’re not on my site. Day after day I send more e-mails off over this. If a big star did me a song Life wouldn’t go wrong. Can someone else do me one? As Mr. Clinton has put an Atomic Kitten in my ear. And life without proper work is sometimes dear. I feel they should sign about my glory As I’d sometimes like to see them All nailed up to the ye olde totem pole. This time around I feel a lot of guilt sometimes For thinking this As no-one ever gets me out of this fix. You write off, this isn’t on their list.

Can someone else do me one? As Mr. Clinton has put an Atomic Kitten in my ear. And life without proper work is sometimes dear. ~~~~ Volume II 2001 p. 13-14 Horror Stories from Beckley School, Room 135, Volume 1 by James Williams NOTE: The story you are about to hear is true. Only the names have been changed to protect the guilty. This happened in February 2001, not in 1960. In Room 135, the Autistic Room, in Beckley School, the aides and teacher do not know much about the autistic spectrum. No one knows how to treat them, and as a result, the kids are so angry that they break down by the end of the day. The first torture is that Room 135 is right by Room 133, the Music Room, and so the autistic people are forced to hear students filing in and out and hear tinkly xylophones and beating drums all day. The teacher in charge of Room 135 refuses to keep the door closed because autistic children should get used to noises of the world. Here is one horror story from Room 135: “Kimmy and the Social Skills Misunderstanding” One Friday the teacher of Room 135, Mrs. Wright, called in sick. Therefore, Mrs. Smith was asked to be the substitute teacher until Mrs. Wright could teach again. One of the students, Kimmy, was excited. She always liked new people to come inside the room because she wanted to play with them. Normally, this is a VERY good thing for an autistic child. But not in this classroom. Kimmy’s aide, Mrs. Parks, was late that day and hadn’t arrived yet. Mrs. Parks NEVER let her play with guests. The reason: The school wanted her to learn INDEPENDENCE, which is stupid because the average autistic person is born independent, and should be taught how to be with people first, not to be independent first. So, when Kim saw Mrs. Smith, she said to her as polite as she could, “You play with Kimmy? You play with Kimmy?” (Although she was 11 years old, she was still learning how to talk correctly.) Mrs. Smith heard Kimmy and, seeing no one was stopping her, said she could play with her during Free Time. “We gonna have FUN!” Kimmy said back. Free Time came and so Mrs. Smith came to play with Kimmy. Kimmy said, “ You help Kimmy with puzzle? You help me?” Mrs. Smith, having been educated and knowing a lot about autistic people, decided to get theraputic when helping Kimmy. She had Kimmy touch the curves of the pieces of the jigsaw puzzle. Then, while she had Kimmy’s hand on the puzzle, she said, “Curve.” Kimmy, having mild echolalia, said “Curve,” back to her. Then they slowly starting to solve the puzzle. During the playing, Kimmy said, “ We gonna have FUN!” She also showed almost every normal social skill the typical child would have. Then as if on cue, Mrs. Parks, Kimmy’s aide, bustled into Room 135 and said to Mrs. Smith, “I’m sorry, but you cannot play with Kimmy. She has to learn independence.” Then she said to Kimmy, “NOW READ YOUR SCHEDULE, KIMMY!!!” But Kimmy immediately deteriorated. she said, “Uh. Um. Uh Um,” and then said her schedule in a soft, lazy, mumbly voice, just like many autistic people behave. She was rebelling! She was pretending to be autistic! “KIMMY! NO MURMURING AND MUMBLING! USE YOUR GROWN-UP KIMMY VOICE! IF

YOU DON’T STOP MURMURING YOU LOSE TWO POINTS!” screamed Mrs. Parks in the same volume. Kimmy stopped talking. She lost two points. Now in this classroom, every Friday the class had a weekly party before the end of school, which consisted of corn dogs for everyone who attended and the people who attended the party took a vote on the movie they would see. However, if you didn’t have eight points for the week, you couldn’t have a party. The people who couldn’t attend were forced to stay isolated behind the curtain in the classroom (which was specifically used for that reason), and since Kimmy had had 9 points and had lost 2, making her only have 7, she missed the party. The aide told Mrs. Smith that this was the 1st time Kimmy ever missed a party, all thanks to her. Kimmy sat behind the curtain with the rest of the class for 45 minutes, confused as to why she couldn’t attend the party, while the only boy who had enough points to attend refused his corn dog and spent the entire party under his desk. No one watched the movie. The moral of the story: “Autistic people may sometimes be misbehaving because of their disability, but they may be misbehaving to defend themselves from the cruel world. Therefore, treat your autistic child nicely and he may be less autistic than before.” THE END ~~~~~~ Volume III 2001 p. 18

Editor’s note: The following poem was written by one of the women who works in our Maap office, Robin Klaubo. She composed it and put it on our office door to remind us of our camaraderie. A GARDEN GATHERING by Robin Klaubo Why do women gather? Out of want, or out of need? A little bit of both, I’d say, Like planting garden seeds.. The area is readied, A circle is formed, Smiles exchanged, Hearts warmed. Having problems? Let’s talk it out; you’ll find a new way to look at it, no doubt. Looking for a recipe? Just mention your need. You’ll get delicious, nutritious instructions to read!

A friend who is ill, An unhappy child, Advice, tips and sympathy offered, Will make it seem mild. The group is the soil, Interaction the seed, Ideas exchanged, friendships created, All the warmth you need; To reap a beautiful, healthy harvest, To eat or to show, Put two or more women together, Watch us love, learn and grow!! ******* Volume IV 2001 p. 17 “Who I Am” by Terri McPherson I am not my hair, my eyes, my nose or my mouth. I am not my skin or the shape of any of my body parts. I am not the IQ of my brain. I am not the sound of my voice or the volume of my laughter. I am not my strengths or any of my weaknesses. I am not the level of my skills. The temple of my physical makeup is a culmination of genetics, It reveals nothing about the person who resides within. I take no credit or point no blame for the way I look. My temple is perfect, as is.

This is not who I am. It is an exquisitely perfect dwelling for my soul. Everything about it is exactly as it should be. No other, anywhere, ever, could serve my soul as well. I am not anything you can see with your eyes or touch with your hands. Should you judge me by that criteria, you will never know me. I am not a dumping ground for bias that’s based

on a man-made standard, and I do not accept the prejudice it creates. I am a union of body, mind and spirit, a trio, not a solo. To know me, is to know myself. Those who hear the voice of their soul, recognize the song in mine. They do not stop at the front door and judge me by the dwelling in which I reside. With a humble sense of honor, they knock upon the door and ask to come in. The judgement of others does not change who I am. Quite the opposite is true. It reveals who they are. Those who deem me unworthy at a glance and pass me on by, have my blessing to keep walking, for they have a long way to go. They have not reached the point in their journey where they are able to see and appreciate me for who I am. I will accept no less.