When I was four years old, I was diagnosed with Asperger’s syndrome. The diagnosis was fairly new at the time—it had only been a diagnosis under the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) for seven years at that point—so my mother and father had to bring me to a specialist in order to diagnose me. Neither of them had ever heard of autism before, let alone Asperger’s. While they were glad to have a reason as to why I didn’t behave like other children, they still didn’t understand how they could help me overcome the challenges I faced.

Even with my diagnosis, there were few resources available to parents to help them understand their autistic children. The spectrum model of autism was a recent phenomenon at this time, and of the few people who knew about autism, many still thought of it as describing a very narrow set of characteristics. Awareness for autism in general was almost non-existent, especially in a sparsely populated state like Maine. My parents had to work hard to find resources to help me.

One of their biggest hurdles was acquiring educational accommodations for me. The local elementary school I attended didn’t have a special education program to speak of. Although my Individualized Education Plan (I.E.P.) entitled me to academic accommodations, my elementary school was reluctant to provide the services I needed to succeed. 

Looking back, I think I understand why the school made it difficult for me to receive accommodations. While I remember that the school’s reluctance was in part due to poor administration, I feel that the problems stemmed in large part from a lack of understanding as to why I needed what I was asking for.

For instance, when I was young, one of the things that worked best to calm me down was chewing on something. Gum wasn’t allowed at the school, and my parents didn’t want me chewing on my own clothes. Instead, I chewed on straws, which were available in plenty at the cafeteria. The number of times an administrator stopped me in the hallway to tell me to take the straw out of my mouth, and the number of times I or someone else had to then explain that I had been given permission to do so, went beyond young Benjamin’s ability to count. Small incidents like this were typical, and symptomatic of the larger issues I experienced at the school. Administrators and teachers alike didn’t understand that, while my behaviors may have been odd, they were effective ways for me to function in a school environment.

Since then, autism awareness has improved exponentially. The schools I work with now are all eager to learn more about how they can help their autistic students and many already have strong programs designed to help students on the spectrum. If today’s level of autism awareness and education was around when I was a child, I don’t feel my parents would have had nearly as much trouble getting me the accommodations I needed. 

Speaking of parents, autism awareness has also resulted in more resources for parents with children on the spectrum. Public schools, universities and other non-profit organizations are providing a number of services to parents that didn’t even exist when I was a child. While the state of education for autistic children is far from perfect, it is certainly better than it was when I was four. A lot has changed in 15 years.