What Helps, What Hinders

I got an e-mail last week from a mother who complimented my blog and asked me to write an "advice for parents" post describing what helped me the most and what hindered me the most when I was a child.

First of all, I'd like to address a few general issues. There has been very little solid scientific research dealing with what kinds of educational methods, social environments, etc., are likely to result in good outcomes for autistic people. Unfortunately, that is because most researchers (and those who fund them) have assumed autism to be a disease process and consequently have focused their efforts on cure, treatment, and prevention (through eugenic abortion) of this supposed "disease."

At present, the U.S. National Institutes of Health (NIH) is accepting public comments on how autism research money should be spent. The comment period closes tomorrow (January 16), and those of us who want to see more research into what helps and what hinders the development of autistic children should take advantage of this opportunity for the general public to influence the direction of autism research (an opportunity that doesn't happen very often) by sending a comment to iacc@mail.nih.gov. The email subject heading should include "Public Comment on Draft: Evaluating Progress on the IACC Autism Research Matrix."

You can find more information and a copy of the draft report on Kathleen Seidel's blog, but even if you do not have the time to study the draft report and respond to specific points in it, a brief e-mail stating your concerns about autism research would be better than no comment at all.

A petition will be sent to the NIH tomorrow, asking the NIH to approach autism research with respect for human diversity and to direct more funding to the study of autistic abilities and positive outcomes. Please read the petition and sign it if you agree with it.

I would also like to caution parents that any information or advice from me (or any other individual) should not be taken as representing the experiences of autistics in general. Some researchers have estimated the prevalence of autism spectrum conditions as 1 in 86; if this is accurate on a global scale, it would mean that there are about 70 million autistic people in the world. Conclusions about such a large population should not be drawn from a small sample of individuals. I encourage parents and others who want to learn more about autism to read a wide variety of blogs and websites by autistic writers (the Autism Hub is a good place to start) and to talk with autistic adults in real life, if possible.

Another related caveat: All of us, whether autistic or not, are products of our social environment to a large extent. Because I grew up in an environment where I was treated as a person like everyone else, I look upon my experiences as human experiences, rather than specifically autistic experiences. By contrast, those who often heard their behavioral traits described in medical or psychological terms during their childhood (as autistic "symptoms" or something similar) are likely to characterize their experiences as unique to autistics. Neither of these perspectives should be assumed to represent the full scope of autistic experience.

Now, on to things that helped and hindered me specifically: Books were very helpful for broadening my world as a young child. I learned much more effectively by reading than by listening to spoken conversations. Not all autistic children are visual spatial learners, but I believe that having plenty of books in the house during a child's early years (and reading to the child regularly) is beneficial no matter what the child's learning style may be.

Being able to play outside regularly and to go on long walks exploring my surroundings was also helpful. That gave me a better understanding of the natural world and a feeling that I was part of it. Many children nowadays (both autistic and non-autistic) are kept indoors most of the time because their parents worry that they will not be safe outside, and I think that's very sad. Children need time to chase butterflies, look for the end of the rainbow, and investigate wildflowers and shiny pebbles. Television and video games, no matter how good the picture quality may be, aren't a substitute for actual hands-on exploration of the real world.

What helped me the most? My parents had an easygoing and accepting attitude toward my development, however different it might have been from that of other children. They never made me feel that there was anything wrong or unhealthy about me. I grew up assuming that everyone was different in one way or another and that this was OK. Although my parents probably had some worries from time to time, they never discussed their worries in front of me. I was encouraged to follow my interests and was told that I could grow up to do whatever I wanted to do.

What hindered me the most? Well, the usual stuff that stresses out children in general... my parents getting divorced, having to move because of that, and the related disruptions. To some extent, however, there were positive effects (in a "what doesn't kill me makes me stronger" kind of way). Although I went through a few years of acting up at school and other places, my ability to deal with change improved significantly. Years later, when I looked back on my childhood, I saw myself as a capable, healthy person who had some school problems because of stress, rather than as a disordered or abnormal person. But that wasn't entirely for the best, either; I had no idea how the rest of the world saw me, and I wasn't at all prepared to deal with discrimination after I left college and went out into the business world (it took me quite some time to understand what was going on).

So there's a trade-off that parents need to consider: Too much information about a hostile world and its prejudices can cause a child to despair, but too little can leave the child unprepared for real life. Parents need to be very careful in deciding what to say to (and in front of) their child about the child's differences. This is, of course, an issue for all minority families, not just for families with autistic children. I hope that as our society becomes more accepting of human diversity, tomorrow's families will not have to face such choices.