A life with autism

Dr. Stephen Shore is an autistic professor of special education at Adelphi University. He has written several books about autism, including Understanding Autism for Dummies , Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, and Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. Currently, he serves on the board of Autism Speaks, and is one of the first two autistic board members. Previously he headed the Asperger’s Association of New England (now called the Association for Autism and Neurodiversity), and was on the board of the Autism Society of America. BrainWise managing editor Matt Villano recently interviewed Dr. Shore about his experience of being a person with autism. The following essay compiles Dr. Shore’s edited responses into prose.

I was diagnosed as autistic when I was 2.5 years old. I’m 62 now.

I was very lucky because my parents used the word autism in the house for as long as I remember. We didn’t know much about it—nobody did back then—but it helped explain a lot of things. They used the word like any other word. Autism was the reason we had to see the doctor every week. It was how and why things were different in school.

Like many autistic people, I was delayed verbally. I was able to communicate as a small baby but lost functional communication at 18 months. This happens to about 30 percent of autistic people. Functional language started coming back by age 4, and by age 5.5 it was all there.

At age 5.5 or so, I knew I was autistic. It helped me understand why things were different for me. It also explained why I had interests in various things that my classmates didn’t. I wasn’t interested in team sports at all, perhaps due to difficulties in coordination. At the same time, I was interested in riding bicycles. I found that exhilarating.

There was so little known about autism then, in the school setting it meant that teachers really didn’t know how to reach me. Telling teachers that I was autistic in school wouldn’t have made any sense. I was just this weird kid with these curious interests. Since I wasn’t a behavior problem, they left me to my own devices. I spent most of my days—especially my elementary school days—reading books on my favorite subjects: electronics, earthquakes, music, space exploration, dinosaurs, volcanoes. I’d take notes on the books, copy the diagrams, read multiple times, then bring them back to library.

Middle and high school was better because I figured out using words instead of sound effects helped with social interaction. Also, I joined the band. I had a structured activity to mediate my interactions with others. I got so involved in music that I got it into my head that I needed to learn to play all the instruments. I spent hours in the instrument closet, learning instruments, taking them apart, sometimes combining instruments into horrific contraptions that never should have seen the light of day.

Then I realized that a requirement for music education was that you had to learn all the instruments. This was very appealing to me. I went to college to study music education.

In college, at least as an undergraduate, there weren’t really accommodations for autistic students. So little was known about autism. Before college, school always seemed to be a bit of a mystery: Guess what the teacher wants, if you get it right, you get a good grade. At the college level, perhaps due to a maturation in my learning ability or difference in teaching styles, I was surprised as it felt like professors were spoon-feeding information as to what we needed for upcoming tests. They were literally telling us what was on the test and showing us what needed to be done to pass the test. It was curious. It made things much easier to understand and manage.

I studied music education all the way from the bachelor’s level through my doctoral coursework. If someone had asked me if I was autistic, I would have said, “Well I was autistic when I was a kid, but not anymore.” It wasn’t anything I was ashamed of, I just thought it was all done.

That’s when something notable happened.

As I was attempting to pass the comprehensive exams for my doctorate in music, I was extremely curious as to why I was unable to analyze music of the Romantic era. It was the first time in my higher education schooling that I had a lot of difficulty. It made me wonder if there was something from my past with autism that was haunting me and preventing me from having success in this area. I got a neuropsychological evaluation and learned that yes, autism was still there and still affecting me.

Music of the romantic era tends to be less structured with boundaries between harmony and structure less definable than music from earlier eras, and this was difficult for me to comprehend. I needed the structure.

When I went back to school and explained to them a little more about my needs and the recommended accommodations, the school was not willing to be flexible. They said I could repeat courses as many times as I wanted, but they were not willing to make any meaningful adaptations beyond that. It was disappointing to say the least.

I strongly suspected the Americans with Disabilities Act would be on my side, and I considered consulting a lawyer for legal action to get what I needed. I also realized that doing so would end up wasting a lot of time and everyone would lose. That’s when I decided to study something else that was just as interesting to me: autism and special education. I defected to the school of education and got my doctorate in special education.

I now teach as a professor of special education at Adelphi University. Autistic people ask me all the time, “What should I know?” I believe the best thing for autistic people to know is to know themselves as autistic people. That means, “What does being autistic mean to me?” What strengths does it give? What challenges does it present? The experience will be more positive if autistic people can find ways to spend more of their time in areas of their strengths.

As an autistic adult, I’m always learning new things about what it means for me to be autistic. It’s always framing and reframing experiences that I’ve had or the experiences that I am having at a particular point in my life. I continue to learn more and more about how to use my strengths in order to achieve success. Every autistic person I know who is successful has found a way to parlay their strengths into something society values and usually that translates into employment.

Everybody has autistic characteristics; for people who are autistic it’s usually a question of how many of these characteristics you have. If autistic characteristics are numerous enough and significant enough to cause significant challenges in everyday life on a regular basis, then it’s time to look at seeking a more formal diagnosis. While there are many online evaluations where you can check to see if you might be on the autism spectrum, it’s important to keep in mind that these are not validated assessments. You can’t diagnose autism by taking these assessments. These are just supplemental screening tools; they suggest that maybe you’re autistic and that maybe you should investigate a little further. If you take one of these screening tests, you score high and autistic characteristics are causing significant and regular challenges, go get additional validation via more formal procedures with a qualified professional for evaluation and get a diagnosis.

Once you receive a diagnosis, advocating for supports is a regular thing to do now, and it’s something I recommend all autistic people should do. Many institutions of higher education, including have programs such as Bridges to Adelphi, specifically designed to support autistic people. All schools have student disabilities office, referred to as the Student Access Office, as mandated by the Americans with Disabilities Act. These can be great resources for autistic and other students with disabilities. The website Thinkcollege.net has a list of college and universities with programs to support autistic individuals. That’s a great resource I often recommend.

Another issue I hear people asking about a lot is the relationship of autism to neurodiversity and neurodivergence. With the removal of Asperger’s Syndrome and other autistic subtypes from the 2013 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, in favor of focusing on levels of needed supports ranked from 1 to 3, people became rightfully confused. People who were and would have been formally diagnosed with Asperger’s have been looking for a more meaningful way to describe their situation, especially since now it has dovetailed into the rise of the concept of neurodiversity and neurodivergence. The term “neurodiversity” suggests that the human race is incredibly diverse with various neurotypes. People who think differently—literally, their brains work differently—than the general population are considered “neurodivergent.” That includes those who are autistic, those who have Attention Deficit/Hyperactivity Disorder, Dyslexia, Synesthesia, and various other conditions. I would have preferred to keep Asperger’s, as it neatly described a subtype of autistic person. Perhaps one reason for the changes was that people were getting too tied up in attempting to differentiate between Asperger’s Syndrome vs. high and low functioning autism. Today we’re seeing more attention paid to neurodiversity because the word doesn’t have negative connotations that many of these individual conditions have had in the past. Neurodivergence is a larger spectrum that autism fits into. It feels good to me.

I know April is a big month in the world of autism. The way I see it, it’s always a great time to value the contributions autistic people can contribute to society. Whenever I speak about autism, I emphasize the need to turn away from looking at autism as a series of deficits, disorder, and disability, and consider autism as a set of unique abilities. Those abilities are different for every person, and they deserve to be appreciated. When you’ve met one autistic person you’ve met one autistic person. 

We must also recognize that there are commonly significant challenges to being autistic, which be addressed and remediated as needed to promote fulfilling and productive lives for autistic individuals the rule rather than the exception. If we lean into an ability-based model of autism, I think we’ll all be much better off.

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