I seem to have a bit of a self-determination theme running through this blog now.  I’ve written about self-determination a fair bit, and most particularly in the context of childhood, because I feel like children in general have relatively little freedom to exercise control over their lives and those with disabilities even less.

Today, I thought I might take our discussion of the importance of self-determination in another direction – mental health (which I suppose is another thing I do try to write about a fair bit, given how important it is).  In neurotypicals, we know that control has important links to depression and mental health.  Why shouldn’t that be the case in autism?  If anything, I think control might have a bigger role in mental health in autism than in neurotypicals.

Control and Autism

After all, control’s pretty important in autism.  Many autistic people prefer to have control over the environments around us.  Why?  In part, this is just one of the ways of being autistic – it’s more or less in the definition of autism.¹ But we can also learn that other people having control over us tends not to end well.  For example, we might have sensory sensitivities, yet find ourselves constantly being forced to expose ourselves to distressing sensory inputs.  Basically, neurotypicals are likely to tell us to do things that neurotypical people themselves don’t find (especially) distressing or unpleasant, but we may experience these things differently.  That can make us suspicious about surrendering control.

We need enough control to place ourselves in environments where we can thrive – environments that are well-suited to our own strengths and needs.

Unfortunately, autistic people are very likely to find ourselves under the authority of somebody else, and we often have fewer choices and fewer opportunities in life than neurotypicals.

This is true in adulthood, where many of us are economically and socially marginalized and where many of us are in precarious employment or even unemployment. Some autistic adults are even under the legal guardianship of others.

It is also true in childhood, where many of us live within inflexible, authoritarian power systems – especially those of schools. Many of us are forced to comply with narrow demands to go from this room to that, to do this activity or that activity, day in and day out. Moreover, well-meaning attempts at providing support can – albeit inadvertently – further restrict our self-determination. Professionals and parents can, when trying to help autistic and disabled people, end up making choices for us rather than giving us the same freedom to make autonomous choices that neurotypical children enjoy.

We don’t have as much freedom to make choices as other people.²

In fact, even if we attempt to take some control for ourselves, we may end up being judged for it. If you look through certain parts of the clinical autism literature, you will see many references to the desirability of “compliance.” There’s even a clinical label called “pathological demand avoidance” that’s used (especially in the UK) to describe autistic people who try and resist or evade the demands that parents and teachers subject us to. Of course I don’t mean to be melodramatic, and I know issues of “compliance” can sometimes be oversimplified by autism advocates who don’t seem to fully recognize that sometimes young kids often make bad choices and that complying with those in authority is often a good idea. Nevertheless, I am still convinced that autistic people today are made to spend far too much time complying and not enough time exercising self-determination.

Control and Mental Health

And that restriction of freedom is where mental health comes in.

Have you ever read about the (in)famous experiment published by Seligman and Maier in 1967?  In their study, “yoked” pairs of dogs underwent electric shocks.  One dog in the pair could press a button and end the shock, which would also end the shock for the other dog in the “yoked” pair.  Thus, both dogs got shocked equally often, but one dog had some control over the shocks whereas the other dog had no control.

The experimenters then moved these dogs, as well as other dogs who had never been shocked, into a new apparatus where they could escape the shocks by jumping over a low barrier.  The dogs who had control over their shocks before, as well as other dogs who had never been shocked, quickly jumped over the barrier and escaped the shocks.  However, many of the dogs who had lacked control over their shocks before just sat there and continued to be shocked.  They had learned they didn’t have control, and as a result, they had developed “learned helplessness.”³

This isn’t just something that happens to dogs – in fact, we know that control can be related to mental health in neurotypical humans.  Specifically, people who feel like they don’t control their own lives – that is, people with an “external locus of control” – are more likely to feel depressed.  Moreover, people who think they have relatively little autonomy at their jobs are more likely to develop occupational burnout.

It’s stressful to not have control over your own life.  It’s stressful to have to constantly worry about choices that others end up making on your behalf.  It’s even more stressful if the choices they make end up hurting you.  All of this stress can end up hurting one’s mental and physical health.

Furthermore, if you don’t feel you have control over your own life, why would you want to go out and try to do things?  If you feel like other people control your life anyway, what would be the point of trying to show initiative?  If you don’t feel like you have control over your life regardless of what you do, why would you have any motivation to do anything?  Why wouldn’t you learn helplessness?

Control, Mental Health, and Autism

To recap: we’ve established that autistic people like to have control over our own lives.  We’ve also established that autistic people often have different needs from neurotypical people and may need some extra control in order to make sure we’re in an environment where we can thrive.  However, we’ve also established that many autistic kids have even less control over their own lives than neurotypicals.  Similarly, many autistic adults are in socially disadvantaged positions and can lack control over their futures. Furthermore, we know from research with neurotypical humans (and dogs) that lacking control over one’s life is linked to learned helplessness, stress, burnout, and depression.

Given that autistic people arguably have greater need for control and self-determination than neurotypicals, and given that we have even less control, it seems pretty reasonable to conclude that this lack of control is contributing to the high level of mental health problems we experience!

I know that I have a pretty strong internal locus of control nowadays: I believe that I have a lot of control over my life.  I would argue that I believe this because I really do have a lot more control over my life now than I did when I was a kid.  I’m also pretty sure that my strong internal locus of control, and the control I that do exercise over my life, have protected my mental health.

So, what we can we do in practice to give autistic people more freedom and control?  Well, obviously giving autistic people autonomy and freedom can be difficult in practice.  Some of us have difficulty making choices, or at least, good choices.  For example, how do you give autonomy to a nonspeaking, minimally-verbal individual who cannot communicate much using any modality?  I suspect a lot of parents and professionals will read this and think about how elitist I am and how little conception I have of the realities of the broad autism spectrum!  However, I hope I am a realist – I certainly try to be.  I know that respecting autistic people’s autonomy will look very different depending on the person and their capabilities and needs, but I do think there are important ways we can and should do more to respect the autonomy of autistic people across the spectrum.

1. As the DSM-5 puts it, we may display, “Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).”

   I think this is in part a (frankly, needlessly insulting) way of saying that many autistic people don’t like it when other people have arbitrary power they can use us to do what they want and instead of what we want, which might happen to involve following a predictable routine, or avoiding a situation likely to cause us sensory distress, etc.  We like to have some control over our lives.

   Incidentally, I’ve written elsewhere about the lack of self-insight neurotypicals display when they unironically accuse autistic people of being “inflexible”: neurotypical society is incredibly inflexible and autistic people are forced to accommodate themselves to its demands all the time.  Of course I’m not denying that autistic people can be annoyingly stubborn and inflexible, but what I am saying is that neurotypicals can also be annoyingly stubborn and inflexible.

2. I should note that freedom extends well beyond mere liberty, which is simply a lack of higher authorities like governments or legal guardians meddling in our lives and ordering us to do things.  Of course, many autistic people do have seriously restricted liberty – particularly children who are under their parents’ legal control, as well as adults who find themselves under continued legal guardianship.  But freedom goes farther than liberty. In fact, freedom and liberty are sometimes at odds.  For example, if people are granted the liberty to make their own health decisions and allowed to not be part of an organized single-payer healthcare system imposed by higher authority, they may risk losing the actual opportunity to access healthcare if they can’t obtain health insurance.  In this sense, their freedom to access healthcare ends up being restricted even while their liberty to do so is increased. Because autistic people are so socially disadvantaged, our real freedom is much more restricted than our theoretical liberty.
3. Of course, since this experiment is in some ways basically about trying to traumatize these poor dogs, it invites some very serious ethical questions, to say the least.  But that’s getting off-topic.