The Autism Generation Gap
by AspieKid, aspiekid.netNovember 12th 2012
I was thinking about autism recently. More specifically, I was thinking about the autistic experience and all the ways it has changed since I was a kid. What factors affect the quality of life of autistics? And how have those factors changed in the last few decades? And it occurred to me that there is an autism generation gap. The experience of being autistic is different for kids today than it was for kids in my generation.
Modern changes to education systems are probably the most significant changes. When I was in school, I had never heard of special education. Special education programs were very rare back then, and the ones that did exist focused mostly on kids with very extreme learning and/or behavioral problems. Most schools didn’t have any special education programs at all.
I loved learning (certain things), but the social side of school, bullying and the rigid institutional structure were all problems for me. I also had problems in school that nobody understood at the time. I had a very hard time comprehending things verbally. I learned much better from printed words, or from pictures on a page. My difficulty in comprehending verbal dictation is probably an autism-related cognitive processing issue. I was also a slow reader, which probably comes from having a very active mind. Every time I would read a sentence it would spawn 20 new ideas in my mind and I would automatically iterate through every one of them, so it took me much longer to read something than it took other kids. I still have both of these issues as an adult, and I’ve found my own personal ways of dealing with them.
None of my teachers knew anything about these problems, so they assumed I was intentionally being difficult or I was just stupid, and so I did not get good grades. The grades I got in school were not an accurate assessment of my true abilities. And I, of course, felt like I was always being treated unfairly and my teachers had unreasonable expectations of me. Back then, having special education needs was considered a form of disobedience. I remember wishing that I could have my own private teacher, not a one-size-fits-all classroom teacher, but a teacher who would allow me to move ahead of my peers in math and science classes but work more slowly with me on the things I didn’t pick up as quickly. I really did wish for that when I was in school. But no such teacher was available to me when I was in school. Today some kids have exactly that, education programs that are designed just for them. I have spent many hours dreaming of all the ways my life might have been different if I had the educational options that autistic kids today have.
Kids today have lots of different therapy programs available to them that were not available to autistic kids of my generation. They also have lots of prescription drugs available to them that did not exist when I was young. It is still too soon to tell whether psychoactive drugs for childhood neurodevelopmental conditions will have a positive or negative long term effect. And people report mixed results from most of the various types of therapy programs. But all the drug and therapy programs are other examples of how the autistic experience has changed since I was young.
I think it is really cool that so many parents of autistic kids reach out to autistic adults in order to learn more about autism. They are trying to bridge the autism generation gap. The experience of autism changes throughout a person’s life, just like the experience of being neurotypical changes over the course of someone’s life. So parents reach out to people who are in all the various stages of autistic life. In spite of all the modern treatments that are available for autism, people are still curious about the ones who came before. The ones who never had any therapy programs, and never took any drugs to help them concentrate in school, and never had Individualized Education Plans, and were never told how they should and should not play. The ones who grew up without even knowing they were autistic. They achieved various degrees of success in their lives, and they were not a generation of social outcasts and failures, even though almost none of them received any treatments at all because nobody even knew they were autistic.
I also find it interesting that there are currently two living generations of autistics who grew up in very different ways. This could be thought of as a window of opportunity for research into the quality of life of autistics. There is value in qualitatively comparing the lives of two consecutive generations of autistics.
My generation will be the last one that will ever grow up without knowing about autism. And for some reason, I think there is something really sad about that. Public awareness of autism has changed the experience of being autistic. Even though all of our modern knowledge of autism makes society more accommodating for autistics in many ways, something really special about the autistic experience is lost in the process. There is something very private and personal about remaining incognito about such a unique neurological state as autism. It’s like a comforting sense of safety in anonymity. Autism does not lend itself well to public scrutiny. It changes when you put it under a microscope, like a self-protective camouflage instinct, making it difficult for outside observers to get a clear view of it. The only time autism is in its truly natural state is when nobody is looking.
See also: Autism’s First Child
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