Sometimes, the things we don’t talk about can be very revealing.

I’ve previously written about my fear that many autistic people are becoming dependent on supports and failing to surpass the low expectations that others have of us.  While this usually doesn’t cause too many problems in childhood, it can be disastrous in adulthood.  Not only does the adult transition take autistic people into new and unfamiliar environments, with greater demands, but our society strips away most supports just as this transition occurs.  People who depend on supports will be shocked and overwhelmed.  That’s part of the reason why so many autistic people are failing to find jobs in the adult world.

For the purpose of scrupulous accuracy, it’s not like I’m the sole, only, lonely voice talking about this dependence problem – other autistic adults have expressed concerns, and interventionists will sometimes talk about the idea of “prompt dependence” and how we should strive to avoid it.  All the same, this is a subject that I still maintain is rarely discussed, considering how important it is.

We talk a lot about the adult transition, yes, but we seem to spend a lot less time focusing on the problems of dependence and learned helplessness in autism.

And there’s a reason for that.[1]

Autism is the centre of an industry.  There are numerous neurotypical people who have jobs that exist within an autism support system, or whose research careers depend on the ready availability of grants to study autism.  These people have a vested interest in ensuring that autistic people continue to require the supports, services, and knowledge that they provide.

Now, I’m obviously not claiming that thousands of individuals in thousands of different organizations organized some kind of deliberate conspiracy to keep autistic people dependent.  (After all, I’m researching autism myself – my own prospects depend on autistic people’s continued need for support just as much as anyone.)  Nor am I claiming that individual researchers and professionals are deliberately trying to foster dependence out of callous selfishness.  On the contrary!  Many of these professionals actually care deeply about autistic people’s welfare,[2] which means that their own personal satisfaction depends on the idea that their actions always do good.  And indeed, these actions might do good – in the short-term future.  But in the long term, people will enter adulthood, and supports they have come to depend on may vanish, causing harm.

Humans are very good at convincing ourselves that our actions are always to the benefit of others.  Evolution has equipped us with brains that allow us to pursue selfish motives while believing ourselves selfless, because it’s easier to lie if you believe it yourself.

For professionals and researchers, admitting that our actions might sometimes backfire and, in the long run, end up hurting the people we’re trying to help can be very uncomfortable.  If we sometimes take a shortcut and help an autistic person do something by doing it ourselves, we want to focus on the good we did for them (getting the thing done).  We don’t want to think about the harm caused by the person’s failure to learn how to do the thing for themselves.  Likewise, we don’t want to think about the possibility that the individual has internalized our low expectations of them (we clearly didn’t expect them to do the thing themselves).  We don’t want to think about the possibility that we may be teaching autistic people to learn helplessness.

But if professionals foster dependence and learned helplessness, surely this would be something that autistic adults and parents would be urgently protesting, whether or not professionals want to talk about it?  Apparently not.  It’s true that some specific professionals have come in for a great deal of criticism.[3]  But by and large, autistic people and their parents haven’t raised many concerns about dependence.

That’s because there is a genuine sense in which autistic people are, even before learning helplessness, somewhat dependent.  We have a disability, and we do need services and supports.[4]  It’s not like these supports are always harmful – they have their issues, but they can obviously be very helpful.  And autistic people and their families are often in a state of perpetual crisis, working on solving the latest issue rather than planning ahead.  Parents can be so busy with work and other things in their lives that they will themselves rush to get things done for an autistic child, preventing that child from gaining learning opportunities.  Indeed, families may need knowledgeable professionals to help them realize and avoid the impending problems that come with fostering dependence; if parents haven’t realized that this dependence can be a problem, they’re hardly going to be criticizing professionals for fostering it.  We need supports in the moment too much.  We need to get things done in the moment too much.  Even if the supports are imperfect, even if their long-term consequences aren’t desirable, we don’t want autistic children to experience failure or to have their supports taken away.

Families can also start to have low expectations of children with disabilities, worsening the problem, and making it even less likely that they would criticize professionals for inadvertently fostering dependence.

There’s an autism industry with a vested interest in sustaining itself, and because autistic people and their parents have a genuine need to consume this industry’s products, it’s hard for us to criticize this industry.  And while I’ve used dependence and independence to illustrate the issue, the problem is broader.

We obviously want supports and services, but we need better supports and services: either supports that will help people to become independent, or supports that will be maintained as people enter adulthood.

Do you have thoughts on the autism industry, or on independence?  These are difficult subjects, so I welcome comments and discussion!

Footnotes

[1] Okay, it’s not the only reason.  Part of the problem is that we’re humans with brains that aren’t good at long-term planning.  It’s easier for us to fix immediate crises than focus on long-term gains.

[2] Hence their decisions to pursue careers in the so-called “helping professions.”

[3] For example, mainstream figures from various backgrounds have raised concerns about many “complementary and alternative medicine” practitioners, who offer autism therapies that are usually untested, generally illogical and pseudoscientific, occasionally harmful, and often very expensive.  Many autistic adults, meanwhile, have been critical of the privatized ABA industry.

[4] And in other cases (e.g., with those complementary and alternative treatments), we or our parents can be persuaded that we need treatments that are not effective or required.

But I do want to be clear here: I really don’t want to suggest that the only problem in the autism world is that we don’t believe in autistic people – that our expectations of autistic people are low.  Having high expectations and encouraging autistic people to get things done by sheer willpower is, by itself, not a good solution either.  Because autistic people do face genuine challenges, and because trying to get things done by willpower alone would ignore those challenges, such a solution would probably just end up (further) worsening autistic people’s mental health and causing some kind of burnout.

We DO need supports, but we need smarter supports, that encourage people to reach their potential, and we need support that are sustained over time.