One of the most interesting discussions I’ve ever had in the autism world was at a conference I was involved in organizing back when I was an undergraduate student.  We had organized some panels on different stages of autistic people’s experiences in life and we found that numerous people had particularly negative thoughts about their childhoods.  In particular, they were talking about how relieved they were to be out of school.  To provide a little background, this was not necessarily a group of people who were having an easy time in adulthood – they might be struggling with mental health, or with finding and keeping jobs, or both – yet they were still very relieved to be out of childhood and out of the school system.

Why?

When I reflected on the matter, I realized just how little autonomy children have in the public school system.  It’s an extremely regimented system – a system based on a large number of inflexible rules that give students very little freedom in how they might spend their days and their life.  (Indeed, I worry that children with disabilities might have even less freedom, because of hovering paraprofessionals and other staff constantly telling them what to do – albeit with the best of intentions.)

In adulthood, we have more flexibility and more options.  We can make choices about what kind of job we might want to apply for, or who we might hang out with.  Our choices might not always work out, and we might run into some difficulties, but we can still try to choose our own paths.  In childhood, our options are much more limited.  We have to spend our time in a classroom with a bunch of other kids we may not like or feel any sense of kinship with, and although one gets a little more choice about classes and such as one gets older, there’s still very limited autonomy.  I even hear that some American schools make children get special passes in order to go to the washrooms!

The more I think about this, the less okay it seems.

As neurodivergent people, as people with disabilities, our autonomy gives us the freedom to arrange our environments in ways that work for us – to engage in positive niche construction, to use a phrase from Thomas Armstrong’s books on neurodiversity.  We know the sorts of things that work for us, and the sorts of things that don’t, and we arrange our environments to match – or at least, that’s what we should do.  If we don’t, we’ll be miserable.

In childhood, or at least in school, we don’t have that option.  Our environment is provided for us, and that environment is the one that (more or less) works for teachers and for most neurotypical students.  It’s inherently a compromise, and while it may (again, more or less) work for most people, it won’t necessarily work for neurodivergent people who are in some sense different from the norm.

Our lack of freedom in childhood and schools also contributes to another problem I’ve written about before.  I fear that in childhood, many autistic people may not learn to become their own advocates, to make decisions, and to develop the level of independence that will be necessary in adulthood.  I think that’s partly because of low expectations that become a self-fulfilling prophecy – if autistic people aren’t expected to do well, why should they try to succeed?  But I also think that a lack of freedom and an over-reliance on other people making choices for oneself is part of the problem.  We won’t become good at making choices if we never have an opportunity to practice.

I’m also reminded of critiques of the whole notion of “pathological demand avoidance” in autism.  This is a label mainly used in the United Kingdom to describe autistic children who are perceived to be manipulative¹ because they try to get out of doing things that others “demand” of them.  Damian Milton, an autistic sociologist who has written a number of highly insightful articles, doubts the implicit assumption here that the proper role of an autistic person is to comply with the “demands” of neurotypicals.  Milton argues that an autistic person with PDA might simply be an autistic person with agency, an autistic person trying to resist conformity.  Is this really such a bad thing?

Likewise, I have problems with the whole idea of “oppositional defiant disorder.”  Using one’s authority to state that a less powerful person than oneself is pathologically disordered because they refuse to obey one’s instructions seems pretty dubious to me.  Maybe we need to look into the reasons why people aren’t blindly accepting the authority of others.  Maybe these neurodivergent children realize, explicitly or not, that as atypical individuals they may need an atypical environment – a different sort of environment from the one that’s being forced on them.

I realize we’re not going to be able to fundamentally change the existing system overnight, but I do think the existing system is problematic on many levels.  I’ve complained before that neurotypical individuals often say autistic people are pathologically rigid and inflexible, and yet I think the systems and institutions of neurotypical society must be at least as rigid and inflexible, and probably much more so.  I think we need to start respecting autistic children as individuals with agency and start giving them more power and control over their own lives.

1. Which seems rather insulting to me, I must say – neurotypical people are often manipulative (and frequently act in highly manipulative ways without even realizing it). I’m pretty sure autistic people are much less likely to be manipulative, and on those occasions when we do try to manipulate others, we’re not necessarily good at it. So why are we being called manipulative? Not fair.