2008 Spring Newsletter

Autism Society of America au Santa Barbara Chapter

Education

SPRING 2008

Awareness

Advocacy

Support

April is Autism Awareness Month! * * * Message from our President * * * Ah, Spring! That renewing time of year, when we clear out the old things we no longer need or use, look forward to longer and more productive days, and start to plan for the long expanse of Summer. Spring brings us new vitality as we see flowers coming back into bloom and trees bringing forth new fruit. The rejuvenation of the natural world around us inspires us to venture out ourselves into new and exciting areas of activity. Spring 2008 finds ASASB working in new and exciting areas of service to our community and collaboration with our local agencies and resources. We have just introduced “Autism and Your Child: A Guidebook for Parents,” a comprehensive packet of information for parents of newly-diagnosed children (see page 2). This resource is the result of many years’ work compiling resources, securing grant funding, participating in county-wide and tri-county inter-agency meetings, and inviting input from parents and professionals alike. We are particularly proud that it is available in both English and Spanish, and will be available in both hard copy and on our website. Contact our office, if you or someone you know would like a copy. We have planted our first auxiliary chapter – ASASB North County Auxiliary in Santa Maria/Orcutt – and that emerging group has now joined forces with Santa Maria Autism Support to become a strong core of proactive and educated parents advocating for their children’s needs in the North area of the County. We have also been collaborating with Area Board 9 for Developmental Disabilities by bringing parent training in Special Education Law and the Lanterman Act to North County for the first time. In January, the Board of ASASB participated in the inaugural meeting of the Alliance of California Autism Organizations, a statewide coalition of more than thirty parent-led autism advocacy groups, which has begun a focused and energetic effort for legislative advocacy on behalf of children and families living with autism throughout California. In honor of Autism Awareness Month, ASASB is co-sponsoring the Cambridge Center Conference on Autism: Evidence Based Practices, Friday, April 25th at the Santa Ynez Valley Marriott in Buellton (see page 3 for more information). This is a remarkable opportunity for local parents and professionals to hear first-hand from international experts in the field of Applied Behavioral Analysis. Our new North County Auxiliary is hosting its first-ever Autism Awareness Picnic on Saturday, April 12th, at Rotary Park in Santa Maria. This will be a fun, family recreational event, with children’s activities, face-painting and acoustic music, along with information booths and speakers to highlight local service providers and support agencies in the Santa Maria/Orcutt communities. All are welcome to come and explore the possibilities! As has been our tradition over the years, ASASB will also provide an information and resource table at the Santa Barbara Downtown Library throughout the month of April. We are gratified that, once again, the librarians have purchased new publications on autism and the needs of our families, so that they are better prepared to serve library patrons throughout the Santa Barbara community. The work continues and the seeds come to fruition; even so, at times it seems the laborers are few. ASASB needs your time, your treasure, and your talents, if we are to continue being the voice and resource of autism throughout Santa Barbara County. If you have a few hours, a few dollars, or best of all, a few new ideas, come and join us – share in the revitalization of Spring! Yours in service, Marcia Eichelberger, President

The Autism Society of America – Santa Barbara Chapter and The Autism Society of America (ASA) do not endorse individuals, groups or programs. References regarding programs, meetings, resources, treatment, etc. should not be interpreted as an indication of endorsement by either ASA or ASASB. They are provided for informational purposes only.

P. O. Box 30364, Santa Barbara, CA 93130 (805) 560-3762 Office hours: Mon, Wed, Thurs, Fri 10 a.m. – 2 p.m. www.asasb.org [email protected]

ASASB Family Game Night . . . Jenga, Life, Trouble, Connect Four, snacks, giggles, parents chatting, and a good, old-fashioned game of hide-and-seek. All this and more were enjoyed by nearly a dozen families as we gathered for ASASB’s first ever Family Game Night on February 22nd. The TCRC Annex Conference Room was transformed -- as if by magic -- from a staid adult meeting space to a comfortable family game room, complete with cracker crumbs on the carpet and the squeals of happy children playing together as only children do. Who says autism families never have any fun?!

SAVE THE DATES! Monthly Family Game Nights are coming to ASASB! Please join us the 4th Friday of every month (3rd Friday in April), 5-7 p.m. for fun and friendship. Bring your favorite board or card games, or just show up and enjoy ours. Juice and water will be provided; families are encouraged to bring their own snacks. All are welcome – people with autism, siblings, parents and caregivers. Where: TCRC Santa Barbara Annex, 505 E. Montecito St. When: March 28th, April 18th, May 23rd, June 27th, 5-7:00 p.m.

ASASB Announces . . . Santa Barbara Autism Community Comprehensive Education and Support Service (ACCESS) Information Packet for Parents of Newly-Diagnosed Children It is with tremendous pride and satisfaction that we announce the arrival of “Autism and Your Child: A Guidebook for Parents,” ASASB’s original information packet for parents of newlydiagnosed children. Available in both English and Spanish, this user-friendly guide includes information on the diagnosis of autism and its related disorders; an overview of common treatment options; step-by-step explanations of the intake processes and service delivery systems, both for children in Early Start and those ages 3 and older; definitions of common acronyms used in Special Education; and a special booklet of essays and reflections written by parents of children with autism spectrum disorders. Thanks to generous grant funding from our own ASA National Office, as well as support from First Five Santa Barbara County and Santa Barbara Helping Hands, this guidebook is available in hard copy on request, as well as online at http://www.asasb.org.

Invited Speakers / Presentations Andrew Bondy, Ph.D., BCBA, Pyramid Educational Consultants Teaching the Language of Emotions to Children with Autism Gina Green, Ph.D., BCBA, San Diego State University &University of North Texas Evidence-Based Practice: What is it and Why is Everybody Talking About it Rob Holdsambeck, Ph.D., BCBA, eBIP Speakers Holdsambeck & Pennypacker: Adding Precision to Measurement and Reality to Predictions in Treatments of Persons with Autism Jane Howard, Ph.D., BCBA, Therapeutic Pathways Improving the Social and Communication Skills of Children with Autism Using the Science of Behavior Analysis Hank Pennypacker, Ph.D. Speakers Pennypacker & Holdsambeck: Adding Precision to Measurement and Reality to Predictions in Treatments of Persons with Autism Janet Twyman, Ph.D., BCBA, Headsprout Early Literacy Instruction for Learners with Autism Spectrum Disorders

ASASB’s AUTISM ANGELS SPRING 2008

Michael Rosenberg, Acting Executive Director  Lesley Anne Ezelle, Community Program Specialist  Area Board 9 for Developmental Disabilities  Michael Rosenberg has been the Executive Director of Area Board 3 for more than 19 years. Prior to his joining the Area Board, Michael was the Executive Director of the Association for Retarded Citizens in San Francisco, California. In February of 2007, he was asked to assist Area Board 9 in managing the day to day operations and assisting the Board and staff in setting a direction for the future. Since early March of 2007, Michael spends 2-3 days per week in the Tri-Counties area, working with families and organizations, providing training and direct advocacy services to children and families who are regional center clients, as well as families who have children in special education. Michael has worked with and represented hundreds of families at IEP meetings, as well as in due process, always seeking a way to resolve issues and enhance working relationships amongst the parties. Michael has a Bachelors degree in Drama from Cal State L.A. and a Masters in Education and Administration from San Francisco State University. In the time beyond his excitement and passion for the work, Michael enjoys working in the yard and traveling, which recently included a trip to Spain, where his daughter was studying during her Junior Year Abroad. Michael is happily married and the father of two children, a son and a daughter. He is very honored to receive this recognition. LesleyAnne Ezelle works as the CPS II for the Area Board 9. Her educational background is in psychology, with her first degree in Psychology and Counseling and a Masters of Science in Research Psychology, which she gained from the Institute of Education in London. After university she went to work for Anglia Polytechnic University as an educator and researcher specializing in deinstitutionalization and the development of inclusive opportunities for people with disabilities. After many years at the university LesleyAnne wanted to work more directly with families and individuals who receive services, and when she moved to America in 1997, she went to work for the Area Board 4 as an advocate. Her first position was working at Napa State Hospital as the Advocacy services coordinator and then on to Sonoma Developmental center as the Clients Rights Advocate. She felt the pull of the south and moved to Santa Barbara, taking the position of CPS II at Area Board 9. She is passionate about her work with families and individuals who receive services and enjoys meeting new people and findings ways of creating and ensuring that people have inclusive opportunities. When not working, LesleyAnne can be found hiking the trails of the Los Padres, and on those rare rainy days, quilting. And of course, during kitten season, surrounded by feral kittens that she is working to socialize and find homes through local rescue groups. She is very honored to receive this recognition of the Autism Society of America Santa Barbara.

The only kinds of fights worth fighting are those you are going to lose, because somebody has to fight them and lose and lose and lose until someday, somebody who believes as you do wins. In order for somebody to win an important, major fight 100 years hence, a lot of other people have got to be willing - for the sheer fun and joy of it – to go right ahead and fight, knowing you're going to lose. You mustn't feel like a martyr. You've got to enjoy it. - I.F. Stone, now-deceased muckraker who exposed corruption at the highest levels of government during his lifetime.

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Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. ~~Winston Churchill

ASASB Comprehensive Membership Registration The mission of the Autism Society of America Santa Barbara is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Support, education, advocacy, and an active public awareness form the cornerstones of ASA Santa Barbara's efforts to carry forth its mission. Autism Society of America Santa Barbara is a 501(c)3 organization. Please return completed form to: Autism Society of America, Santa Barbara, P. O. Box 30364, Santa Barbara, CA, 93130 Date Submitted:________________________________ Name(s):________________________________________________New:______ Renewal:_________ Address:____________________________________________________________________________ City:________________________________________ State:_______ ZIP:______________________ E-mail:___________________________________ Phone (home):______________________________ (work):___________________________________ Primary language:_________________________________

Membership Level:

Donation – Thank you!

____Student $15 (includes local, state, and national dues)

____$1000.00

____Individual $53 (includes local, state, and national dues)

____$ 500.00

____Family $64 (includes local, state, and national dues)

____$ 100.00

____Professional $135 (includes local, state, and national dues)

____$ Other ___________

I am a (check all that apply): ____Parent of a person with autism

____

Individual with autism spectrum disorder

____Grandparent of a person with autism

____

Other relative of someone with autism

____Professional– public agency

____

Professional– private practice

____Student planning a career as a service provider

____

Other___________________________

Intervention Spotlight -- Applied Behavioral Analysis (ABA) Behavior Analysis is a science of learning and motivation, based on over 100 years of sound scientific research. ABA is the application of the basic principles of behavior analysis to solving socially important problems. Using ABA to treat autism started in the 1960s and now involves using more than 30 years of scientifically proven principles and procedures to design individualized programs for teaching skills that children with autism have deficits in, as well as helping children to learn replacements for their challenging behaviors. The ABA perspective is that anything that a child needs to learn can and should be assessed and taught like a skill. All skills are broken down into small, teachable units, and positive reinforcement, prompting, prompt-fading, and generalization training are used to teach the skill and to make sure that it maintains in the child’s natural life. Research has demonstrated that ABA is an effective strategy for teaching skills in every area of human functioning, including language, play, social skills, daily living skills, vocational skills, academic skills, self-monitoring skills, and to decrease challenging behaviors of all kinds, including aggression, self-injury, tantrums, property destruction, stereotypy, and many more. The use of ABA to treat autism has been thoroughly researched with sound scientific methodology. In the past 20 years, seven long-term, large-scale studies have demonstrated that children who receive more than 25 hours per week of ABA for more than 1 year, make tremendous gains, some even achieving functioning at a level which is average for their age. In addition to the largescale, long-term outcome studies, approximately 1,000 small-scale studies have demonstrated that ABA can be used to teach children with autism skills of every kind. The large-scale, long-term outcome studies have mostly been conducted on young children with autism, up to age 7. However, hundreds of the smaller-scale research studies on ABA have included adolescents and adults with autism. These studies have proven that ABA can be used to effectively improve functioning in just about any area where an individual has skill deficits. There is a lot of confusion about various terms used in treating young children with autism, particularly regarding various procedures that make up a comprehensive ABA program. ABA is not synonymous with Discrete Trial Training (DTT), which is only one teaching procedure used in ABA. It is also not different from natural environment training (NET), pivotal response training (PRT), applied verbal behavior (AVB), or picture exchange communication systems (PECS). Rather, these are all different ABA-based teaching techniques used to teach skills to children with autism. Top-quality ABA programs combine all of these teaching procedures to tailor treatment to the individual strengths and needs of each child. The large amount of sound scientific research which has proven the effectiveness of ABA has led several independent groups to endorse its effectiveness. The Surgeon General of the United States, the New York Department of Health, the National Academy of Sciences, and most recently, the American Academy of Pediatrics, all state that ABA is the treatment for autism with the most evidence for effectiveness. © C.A.R.D. Inc. 2002 All Rights Reserved. Used with permission.

Looking for some springtime fun in the sun? Check out Dos Pueblos Little League’s Challenger Division! Challenger Baseball brings together boys and girls 5-18 years of age with physical and developmental challenges to PLAY BALL! Challenger players are partnered with typically-developing “buddies” from the major DPLL teams, so everyone has a chance to participate as a member of the team, increase self-esteem, build character, compassion, sportsmanship, and friendship. For more info., contact DPLL Challenger Coordinator at (805) 681-9165 or visit their website www.dpll.net.

UPCOMING EVENTS ASASB North County Auxiliary Parent Support Group Meetings Every Saturday, Santa Maria 3p, Starbucks at McCoy and Broadway, near Blockbuster, Santa Maria Contact Candyce (805) 349-8031 All in the Autism Family - How to influence & enhance social capacity of those with autism Apr 11-12, Long Beach Marriott Long Beach, 4700 Airport Plaza Dr Contact Autism Today www.autismcalifornia.com/ [email protected] 866-928-8476

ASASB North County Auxiliary Autism Awareness Picnic April 12, Santa Maria 10a-2p, Rotary Park, Santa Maria Contact Candyce (805) 349-8031 or Wendy [email protected] Parents of Special Education (P.O.S.E.) Monthly Meeting 3rd Weds. every month Apr 16, May 21, Jun 18 Santa Barbara 9:30a, TCRC Library, 520 E. Montecito St. Contact Cathy (805) 450-0531 or Jennifer (805) 967-0371, [email protected]

ASASB Family Game Night 4th Fri. every month Apr 18 (note date change), May 23, Jun 27, Santa Barbara 5-7p, TCRC Annex Conference Rm, 505 E. Montecito St. Contact Joanna (805) 682-7165 or Wendy [email protected] The Cambridge Center Conference on Autism: Evidence Based Practices Co-sponsored by The Cambridge Center for Behavioral Studies and Autism Society of America, Santa Barbara Featuring Andy Bondy, Ph.D., Gina Green, Ph.D., BCBA, Rob Holdsambeck, Ed.D., BCBA, Jane Howard, Ph.D., BCBA, Hank Pennypacker, Ph.D., Janet Twyman, Ph.D., BCBA April 25, Buellton Santa Ynez Valley Marriott, 555 McMurray Road, Buellton Contact www.behavior.org Ventura County Autism Society Parent's Talk Night - Options for adults with autism featuring Calvin & Cathi Nye May 16 Camarillo 7p - 9p, Free, Channel Islands Social Services, 900 Calle Plano, Suite K, Camarillo Contact www.vcas.info 805-496-1632 Future Horizons Autism / Asperger's Conference Featuring Dr. Tony Attwood Improving social understanding, strategies to reduce bullying & teasing, sexuality in adolescence, challenges in girls with Asperger's, managing anger & anxiety, love & relationships & much more Jul 7 Riverside 8:15am to 4:30p, Riverside Convention Center, 3443 Orange St, 951-346-4700 Jul 9, Bakersfield 8:15am to 4:30p, Doubletree Hotel - Bakersfield, 3100 Camino Del Rio Court, 661-323-7111 Jul 11 Sacramento 8:15am to 4:30p, Radisson Hotel - Sacramento, 500 Leisure Ln, 800-333-3333 Contact [email protected] 800-489-0727

DONATIONS & GIFTS IN KIND

VOLUNTEERS

Brett and Marisa Grimes Alan Irwin Gloria Kelly Pat and Wendy Kelly Jon Martin, JFM Web Design Starbucks So. Broadway, Santa Maria Albertsons So. Broadway, Santa Maria Keller-Williams Real Estate, Santa Maria

Kelli Johnston Joanna Tse Lorena Arroyo Erika Rodriguez Candyce Estave

SPECIAL THANKS TO

It is the duty of a citizen in a free country not to fit into society, but to make society. --John Holt

Autism Society of America, Santa Barbara Chapter P. O. Box 30364 Santa Barbara, CA 93130

Maren Lambe Design Brad Elliott Photography Dinorah Isis Molina, translator Boone Graphics For production and translation work on ASASB’s ACCESS Parent Guide

Non-Profit Organization U.S. Postage PAID Santa Barbara, CA Permit Number 199