Today, the community of autistic adults is in a state of crisis.  Many of us are unemployed.  Moreover, those of us who do have jobs tend to have marginal, precarious experiences of employment: we are often hired in under-paying jobs for which we are probably over-qualified, and many of us go from one such job to another in a continuous, revolving door.  Many of us are only able to secure part-time work.

Nor are our challenges limited to the domain of employment.  Many of us struggle in post-secondary education and may drop out before we can complete a degree.  Many of us are socially isolated, pushed to the margins of society.

One longitudinal study suggests that a third of autistic adults with IQs over 70 will never have a job and will never attend a post-secondary educational program over a twelve-year period (Taylor et al., 2015).  This is horrifying.

What’s causing this crisis?  We need to know the causes of our struggles so that we can eliminate them and achieve social justice for autistic adults, but unfortunately, there’s no single “correct” answer to this causal question.  Human society is a complex system, and outcomes in complex systems tend to be over-determined: there are many possible causes, or many partial causes.

But understanding these possible and partial causes can still help us eliminate them.

One important cause is, of course, the difficulties that autistic adults can experience when they try to accomplish tasks that neurotypicals can perform more easily.  For example, neurotypical people might be better able to navigate a stressful job interview that would over-tax an autistic person’s ability to navigate complex, fast-moving, unfamiliar social situations in the moment.  Some autistic people might have executive function difficulties that could also impact their ability to succeed in the adult world.  Etc.

Of course, our society has largely been structured to fit the needs of neurotypical people, so we can’t simply speak of autistic people’s difficulties without considering how our social contexts might exacerbate these difficulties.[1]  Job interviews are not a necessary feature of society, and a test that actually requires a job candidate to complete job-related work might be a more valid and equitable method of evaluating job seekers.  It’s also possible for individuals or our society as a whole to directly discriminate against autistic people.  I tend to disclose my autism diagnosis pretty readily,[2] and I’m almost certain that my disclosure hurt my chances when I applied for some positions.  Autistic people’s rights are offered little protection in our society.

Be that as it may, I’m pretty sure that there is more going on here.  Like I said, we live in a complex social world, and almost everything is over-determined.

One other factor that I’m absolutely convinced is partially at fault for these poor adult outcomes in autism is poor preparation for adulthood.  I’m quite concerned that our society has very low expectations of autistic people, and as a result, some of us might not feel much motivation to succeed.  Our society also provides extensive supports for autistic children, and even though these supports are whisked away as we transition to adulthood (i.e., during a massive change of context and expectations that we need more support to cope with – so not exactly the best planning ever!), it’s easy to become dependent on these supports.

But I think we need even more causes to fully account for the shockingly poor adult outcomes we see in the autistic community.  One other cause is mental health.

Mental Health in Autism

Before we proceed further, I want to make sure we’re all on the same page about mental health in autism: anxiety and depression in autism are not entirely caused by some underlying etiological or pathological factor that is shared with autism itself.  It’s not like autistic people’s anxiety and depression is caused solely by some inherent predisposition of autistic people to become anxious or depressed.

It’s true that there can be an inherent susceptibility to anxiety in some types of autism – notably, in genetically-defined Fragile X syndrome – but this inherent susceptibility is only part of the picture.

Autistic people’s lives can be filled with negative – even traumatic – experiences.  We can be victimized, belittled, mocked, and abused.  We can be taken advantage of by our friends, or we can be deserted and left isolated.  We can experience failure, finding ourselves behind our neurotypical peers in different areas, and we can wonder what internal deficiencies cause us to fail where others succeed.  Our preferred activities might not be tolerated by the world around us, and we might face pressure to adjust to the will of the neurotypical majority.  Indeed, the pathological language that we use to describe autism sends the message that autistic people are disordered and deficient, and this message itself is destructive to mental health.

Furthermore, while our world was designed by neurotypicals and with the needs of neurotypicals in mind, autistic people must live in it, even though we can often experience the world differently than neurotypicals.  Experiences that might not be stressful for a neurotypical person might be very stressful for an autistic person.  Many of us have serious sensory sensitivities that can easily lead to anxiety, and the neurotypical world offers little protection against extremes of sensory stimulation.  There are many other examples of stimuli that can be traumatic for autistic people but not neurotypicals.  Connor Kerns and colleagues interviewed autistic adults and parents of autistic children to explore autistic people’s experiences of trauma, and while I believe their work remains unpublished at the time I’m writing these words, some of their examples of traumas are presented in a Spectrum News article.  One autistic child was reportedly more affected by having to move to escape domestic violence and the loss of a pet in the process than by the domestic violence itself, while an autistic adult described “crippling, traumatic stress” from paperwork demands.

Thus, not only are autistic people more likely to have experiences that would be stressful or traumatic for anyone, but the range of experiences that we can find stressful is much wider.

Autistic mental health challenges can often be a response to a lifetime of experiences of stress, failure, and trauma.

Mental Health in Autistic Adults

Because autistic children can accumulate these negative experiences over time, many of us will enter adulthood with an already-crippling mental health burden.  (I think this is especially likely if we attend a school that is not suitable for our needs – we need a good fit between the individual and their school environment.)

When we enter adulthood with mental health problems, that’s going to make it much harder to adjust to the adult world.  It’s crucial for autistic people to get engaged in adult activities – employment or post-secondary studies – early on if we want to avoid becoming one of those people who never gets a job and never studies at all, ever in adulthood.  However, if we’re having trouble finding the motivation to simply get up in the mornings, it’s going to be much more difficult to initiate the transition into adult activities.

Even if we are able to start adult activities, mental health challenges might leave us less able to cope with obstacles and barriers.  “Spoon theory” says that people with disabilities have less energy available as we try to navigate the world.  Any task we try to accomplish eats up “spoons” of energy, and soon we run out of spoons.

Well, I would argue that poor mental health severely reduces our spoon count (our energy reserves).  If someone with good mental health runs into a challenge or obstacle, their belief in their own abilities and their certainty that everything will work out in the end will help them power through the obstacle.  If someone who’s struggling with mental health runs into a challenge, they might very easily slip into thoughts about their own past failures, their weaknesses, and the perceived futility of their efforts.  Therefore, someone with mental health challenges might get overwhelmed and end up losing a job or dropping out of university.

Once one is disengaged from employment and university study, it’s much harder to get back into things – in part because existing mental health challenges will be amplified by the sensation of failure.  Naturally, anyone in their mid-twenties who is effectively stuck playing videogames in a parent’s basement would have difficulty maintaining a positive sense of self-worth after seeing all of their peers finding jobs, graduating from university, and/or moving away to live independently.

Thus, mental health challenges are probably both a cause and a consequence of poor adult outcomes in autism.

Is there empirical support for my statements here?  Yes, actually!  A recent nationwide study in Denmark (Knüppel et al., 2018) reported that young autistic adults who are not involved in educational and employment activities have much worse mental health outcomes than those who are.  About 5% of autistic adults in “normative” employment or education (i.e., employment without support or higher educational studies) had anxiety, and depression rates were about the same.  However, 20% of autistic adults with no educational and employment activities had anxiety, and 18% had depression.  While I wouldn’t necessarily place too much stock in the absolute prevalence percentages, the difference is striking and substantial.

This study doesn’t clear up the causal direction of the association, but I think the idea that the mental health problems are both cause and consequence of the poor adult outcomes makes a great deal of logical sense, so I’ll believe it until proven otherwise.

Conclusions

The unpleasantness of poor mental health should be reason enough to take steps to protect mental health.  Sometimes, in the autism world, we don’t pay enough attention to the well-being of autistic people.  Sometimes, in the autism world, we can have a tendency to make decisions solely based on symptom outcomes and other outcomes that may or may not be related to people’s subjective experiences of well-being.  I’m definitely not trying to say that we should only care about adult employment and educational outcomes, independent of autistic people’s well-being.  I do think that we should strive to (ideally) protect against and (if proactive protection fails) treat anxiety and depression solely because it’s not fun to be anxious or depressed.

However, our efforts to secure employment and educational outcomes give us still more reason to protect autistic people’s mental health.  We want autistic people to succeed in adulthood, and it’s hard to meet the challenges of the adult world without belief in oneself.

Therefore, we should do everything in our power to ensure that autistic people can enter adulthood with robust, positive mental health.  Furthermore, we should do everything in our power to foster a smooth transition into adult activities.  Once autistic adults have obtained stable employment and forged strong social relationships, it may be easier to maintain a positive sense of self-worth.

Footnotes

[1] Philosophically, I prefer to regard autistic people’s disabilities as arising neither from autistic people themselves nor from society, but from the interaction of the two.  This is not because I think the contributions of autistic people and society are always “equal” in some way, but because I think the question of which is more “important” is neither tractable nor interesting.  To quantify the contribution of “society,” we would have to imagine other possible societies and determine whether the individual is disabled in these societies, and our estimate of the contribution of society to any given disability would therefore depend heavily on the breadth of our imagination and the extent of our creativity.  Furthermore, I think the most interesting question is whether we can more effectively address a disability by intervening on the individual or their context – and this is, conveniently, a much more tractable question.

[2] I choose to disclose for several reasons:

• I am engaged in the autism field, so my own diagnosis is relevant;
• I don’t want to end up in a context where there is prejudice against autistic people, so seeing how people react to my disclosure can be informative; and
• my diagnosis is one of the most important parts of my identity.

But I don’t necessarily recommend that everyone should follow me in this – like I said, I’m pretty sure it has hurt my chances in some situations.

References

Knüppel, A., Telléus, G. K., Jakobsen, H., & Lauritsen, M. B. (2018). Characteristics of young adults with autism spectrum disorder performing different daytime activities. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-018-3730-7

Taylor, J. L., Henninger, N. A., & Mailick, M. R. (2015). Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism, 19(7), 785–793. https://doi.org/10.1177/1362361315585643