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When I was in college we visited an institution for children with a wide variety of disabilities. Two areas haunted me out of majoring in special education. One was a room full of deaf and blind children, the other had a group of autistic kids.  This was in the 1970’s, and institutionalizing these children was still fairly routine. Researchers were just beginning to understand learning disabilities, and autism still had years to go to be better understood.  Helen Keller had shown the world what blind and deaf kids could do, yet here they were, still in an institution. To me, both groups of children were so helpless. They were magic boxes waiting for someone to unlock the key so they could communicate. The autistic children all were wearing helmets and were in various modes of self-stimulation, including banging their head on the wall and floor. I was terrified.

Years later I read an essay by one such young person, who found a way to communicate. One statement he made broke my heart, “I beat my head to prove I was alive.”  Both groups of children in that institution were trapped in their heads, most normal or highly intelligent children but no one could know that because they hadn’t found a way in (and sadly, in many cases, didn’t care to look beyond their presuppositions).

The school I taught in had several autism spectrum students over the years. My avoidance of a special education degree, somewhat because of that experience with autism, came rushing back. I’ve taught autistic students English and History in group and individual settings. They all have been my best teachers, helping me to become better at my job. I certainly don’t think of myself an expert on the subject, but I have spent a lot of time with autistic students, albeit at the higher end of the spectrum. I know something about the categorization. 

Initially, my preconceived notions raised fear. I was uncomfortable thinking about these kids. I didn’t have a special education background. What did I know about autism beyond the horrifying field trip? And these kids can be odd, walking around the school or curled up in corners, or barging through your doorway. But once I met them, they were just kids, and the preconceived notions began to fall away. Like I said, I learned so much from them about just being human, let alone autism. And, as one student said to me, as we were rocking away on our chairs, “all of us are probably on the spectrum”. For sure.

So I read the discussion going on today about an “autism epidemic” and finding a cause so we can eradicate it, and I get agitated. Difficult as it may be, living with autism, I do not believe any of my students are looking to be “cured”, nor should they. I heard Robert Kennedy Jr. listing all the things autistic kids will never be able to do (hold a job, get married, go to the bathroom by themselves) and I want to scream, “Have you ever met someone with autism?”  Of course there are extremes along the spectrum, but research has found so many inroads into helping people live with autism. In my experience there was very little those kids couldn’t do, about the same as any other student, sometimes more.

Temple Grandin responded to some questions about all this new uproar. She holds a PhD in animal science, teaches at university, has written many books, and is autistic. Hmm – she didn’t let the term “never” stop her, and she survived those years when the popular course was institutionalization – not to learn but to be shut away. Fortunately that was not her history. She agrees that autism needs further research, especially to help people with autism deal with sensitivities (which drove many of them to bang their heads). She also sees a need to research how children developing in a normal pattern begin to regress and would classify as “autistic”. What caused the regression?  But beyond that, she wasn’t asking anyone to find a cure for her, and she believes, as is common wisdom today, that autism is genetic.

When you work with a lot of autistic children you begin to see the pattern. One of the parents will present on the spectrum as well. If that isn’t genetics, I don’t know what is.  I am sure, as with all of us, environmental issues play a role, but not as a cause. My students were good students, and many were brilliant. Many struggled with social skills, but not all. Put them to a task and you get results. Help them find ways to bolster their strengths and accommodate their weaknesses and they succeed. Most of my students went on to college and graduated to move out into the work force. College wasn’t an option for all, and some struggled with what to do going forward, but “never” wasn’t a word to describe what they could do. The bigger point is that they were all individuals, not a one size fits all category.

Like so many issues today, I just wish people (especially people in power) could meet and spend time with these kids. Autism isn’t an issue, autism is people, (like LGBTQ+) - people not labels. If you meet and spend time with the people, you get a much stronger perspective on the label. You might have to ditch some of your preconceived notions (like I did), but you will meet some of the most amazing people around.