Our first meeting was in the spring of 1988 under the auspices of the Department of Child Psychiatry at Stony Brook and the direction of John C. Pomeroy, M.D., to whom we are most grateful. Dr. Pomeroy, at that time the Director of Child Psychiatry, O.P.D., University Hospital at Stony Brook, was doing research on high-functioning autistic-like children. As his study progressed, it became apparent to him that a number of families were in need of a support group where parents could share experiences, develop and learn about potential resources and discuss management of our children’s problems.
“Autistic-like” was a medical diagnosis, not an educational classification; knowledge and understanding of autism as a spectrum disorder were virtually non-existent. No needs of individuals with higher functioning autism or pervasive developmental disorder were being met in the late 1980s. Most disheartening was the complete lack of identification of children with autism with average or above average IQ’s. Instead, they were medically misdiagnosed, educationally misclassified and inappropriately served. (“He can’t be autistic, he talks.” “He can’t be autistic, he doesn’t just sit in a corner and rock.” “This is a happy well adjusted, emotionally disturbed child.” “Why do you want your child to be autistic?”)
Our children were in schools all over Long Island, we had no way to find each other and most of us had never met other parents with children like ours. One year later, with the support of each other, continued encouragement and support from Dr. Pomeroy, and a membership of 24 parents, we began to become more autonomous. We have continued to grow in knowledge, in expansion of ways to reach our goals, and in numbers. Today we have over 700 members – parents, professionals, family members and individuals on the spectrum of autism.
Our primary purpose was, and is, to support one another as we advocate for the unique needs of children and adults with an Autism Spectrum Disorder (ASD).
Our goals are:
To increase awareness and knowledge of ASD among the professionals who diagnose, treat, educate or provide services.
To attain appropriate educational programs, effective social skills training, increased social and recreational activities, meaningful employment, and sufficient and satisfactory independent living accomodations for those with ASD.
To develop a strong network of parents supporting one another through the challenges of daily life.
To provide parents and professionals with a forum where they can exchange pertinent information.
In keeping with our primary purpose and the fundamental goals of educating parents and professionals, and of increasing awareness of Autism as a spectrum disorder that occurs in degrees, some of our most successful accomplishments to date are:
Monthly support groups: six day and evening meetings in Nassau County and Suffolk County. Four are focused on the needs of parents of school-aged children, one on the needs of parents of older teens and adults, and one in conjunction with GRASP (Global and Regional Asperger Syndrome Partnership) for individuals on the spectrum 18 years and up, facilitated by an adult with Asperger syndrome.
Two-day conferences, highly successful and held annually since 1994, targeted for teachers and other professionals focusing on the educational needs of chldren with HFA/AS/PDD. We feature nationally known professionals such as John C. Pomeroy, Tony Attwood, V. Mark Durand, Carol Gray, Amy Klin, Linda Kunce, Catherine Lord, Brenda Smith Myles, Diane Twachtman Cullen, and our overwhelmingly popular Teen Panel. Two libraries, one for our Suffolk members, one for our Nassau members. Both contain current and useful books, videos, and periodicals.
On the Spectrum, our quarterly newsletter, distributed to over seven hundred parents, professionals and other supportive members.
http://www.aha-as-pdd.org, a website created and maintained with a comprehensive reading list, support group information, links to pertinent internet sites, and a mailing list to disseminate timely and useful information and articles of interest.
Annual picnic hosted since 2000, where families have bonded, young people on the spectrum have made lasting friendships, siblings have found special connections and extraordinary memories have been created.
Monthly family bowling days since 2003, held in two locations, one in Nassau County and one in Suffolk County.
1988 – Advocates for High-Functioning Autistic-Like Children
1993 – Advocates for High-Functioning Individuals with Autism/Pervasive Developmental Disorder
1997 – Advocates for Individuals with High-Functioning Autism, Asperger's Syndrome and other Pervasive Developmental Disorders (AHA/AS/PDD)
The changes in our name are due to the continuing fluctation in diagnostic terminology, politically correct language, our efforts to be all-inclusive, and the too-frequent use of euphemisms for "autism."
AHA/AS/PDD does not endorse or recommend any product or treatment. This site is intended for informational purposes only. Please consult with experienced professionals to determine the most effective treatment for your own child as each child and situation are unique.