Transition to adulthood is a daunting challenge.  In transition to adulthood, we fall off a cliff.  We suddenly find the predictable environments that have surrounded us changing, and we enter new and different environments.  In these new environments, we encounter new expectations, new demands.  In these new environments, our familiar support systems fall away, and we find ourselves struggling to advocate for ourselves within an unfamiliar and inadequate set of adult service systems.

Seriously, if you have a group of people who thrive on predictability, why would you rip away all services just those people face unpredictable environments and new demands?  It almost feels like our service systems were designed by some nefarious architect plotting to make autistic people’s lives as difficult and miserable as possible.[1]

What is the result?  Well, autistic people have poor adult outcomes.  That’s hardly news.  Relatively few of us will be able to hold down a job, and many will have an unstable record of being temporarily hired and then fired again.  Many of us will never have a job at all – period.  One longitudinal study shows that a third of autistic people will never – in twelve years – have a job or participate in postsecondary education (Taylor et al., 2015).[2]  Furthermore, for those who have jobs, many will be in fairly low-wage, low-prestige occupations: retail, food preparation, cleaning, and so forth.

The situation is not acceptable.

Now, given this bleak picture of the future, one would think that parents would be trying desperately to give their autistic children all the skills they need to succeed in adulthood – and many parents are trying to do just that.  But not all.  There is a sense today in which many autistic children are not learning independence, but dependence.

John Elder Robison (2016, p. 4) raises this concern when he writes:

“When I was growing up, I never for a moment doubted that I would be able to make a living.  What other choice was there?  Starvation?  Yet many of the parents I was meeting seemed to doubt that their kids could do much more than get dressed in the morning and play videogames.

“Their low level of expectation was shocking to me, and I began to wonder if it was an unintended downside to the new diagnostic awareness.  Maybe today’s autistic kids were like wise and wily pets who had trained their parents to feed them, house them, and provide entertainment and healthcare for a lifetime, all for free.”

Similarly, Temple Grandin comments (Grandin & Duffy, 2004, p. xv):

“In hindsight, I was lucky to be born a child of the 1950s.  The more structured life style that was prevalent then was very helpful to me…  I was expected to sit still through dinner, to be polite to others, to do my chores, and to get along with my siblings.  As I grew older, I was expected to work.  At age 13, I held down my first job, working two afternoons a week as a seamstress’ assistant.

“Although my parents provided plenty of assistance for me, they also had high expectations.  It is those expectations that have helped me navigate the world.  For youths on the autism spectrum, this is especially important because they will have to work harder to prove themselves in our fast-paced, competitive global economy.”

What’s Changed?

Now, unlike Grandin and Robison, I am a millennial who can’t really speak from personal experience as to whether things have been easier in the past or not.[3]  However, I can look around and see autistic children who are being sheltered from the realities of the world by their parents and by the professionals around them.

I can also – without making an overall judgement that things are/were better now/then – identify some things that may have changed between the contemporary world and the past.

Some of those changes have undoubtedly been positive.  For example, it seems like the mainstream schools in those years might have been far worse environments than they are today.  Bullying and victimization would have been more acceptable in those days, and I imagine that autistic people might more often have entered adulthood struggling to cope with trauma and mental health problems from these experiences.[4]  Just as they do today, these mental health struggles would have sapped energy and made it harder to transition.

There’s also some services and knowledge today that wouldn’t have existed in the past.  When one reads the memoirs of autistic people who had particularly difficult transitions in past decades – people like Donna Williams (1992) or Dawn Prince-Hughes (2004) – one is struck by the reactive nature of their struggles.  Proactive responses would have required a knowledge of autism that didn’t exist at the time, and an autism diagnosis that wasn’t usually awarded.

Meanwhile, many other autistic people wouldn’t even be in the mainstream schools – they would have been institutionalized.  It is difficult to exaggerate the horrors of the era of institutional psychiatry.  One has only to look at footage like Geraldo Rivera’s horrific documentary of the filthy, dehumanizing, and utterly abhorrent Willowbrook State School (1972).  The images of naked inmates stuffed into dark, overcrowded rooms make a mockery of the term “school.”   Indeed, detainees in institutional settings were often worse off than criminal offenders in prison, not only in their living conditions but also in terms of their basic rights (Szasz, 1970, pp. 17-21).  The idea of integrating the victims of institutional psychiatry into competitive employment wasn’t on the radar for a long time.

Furthermore, as much as many autistic adults dislike current practices in early intervention, early intervention does seem to result in better language and IQ outcomes.  Now, we shouldn’t exaggerate the effects this will have on adult outcomes.  As shown by Taylor et al. (2015), language and IQ are far from enough to secure a job.  Furthermore, many people with intellectual disabilities can have excellent employment outcomes, especially with appropriate supports.  But if adults do land a job, language and IQ can help them pursue their ambitions as they move up the career ladder.

However, in some ways, there are additional barriers in the present that wouldn’t have been around in the past.  Cross-temporal research shows that the proportion of American adolescents obtaining paid work experience has been falling over time (Twenge & Park, 2017), particularly in the years after the smartphone revolution.  Twenge (2014) also points out that young people are increasingly being told that they can do anything, even though this message may not reflect the realities of adulthood.  This is happening to the entire population, not specifically to autistic people, but it could mean that there is less continuity today between childhood and adulthood: that many adolescents are not being prepared well for adulthood.  If there is a sharper disconnect between the environments of adulthood and childhood, this could hit autistic people, who thrive on predictability and need time to learn coping mechanisms for new contexts, harder than most.

Furthermore, as John Elder Robison suggests, it is likely that the diagnosis itself is lowering many people’s expectations for the future.  Because they realize that their autistic child has a disability, modern parents might come to accept that their child won’t go on to get a job or support themselves in adulthood.  However, while it’s true that adulthood brings many challenges, expecting autistic people to fail only creates a self-fulfilling prophecy.  When parents signal that they expect their children to do little more than sit in the basement and play video-games, these young people might end up doing just that.  If we expect children to fail, why should they try to succeed?

More than that, the support systems that we can put in place for diagnosed children can easily foster dependence.  Some autistic people today are being taught to become dependent on the prompts of an educational assistant, a paraprofessional who hovers around us, or some other kind of support person.  Many of us learn to rely on our parents to schedule us and nag us into doing our work.  Sadly, it’s often easier and more efficient in the short term for others to do things for us than for them to let us do things ourselves – but if we don’t do things for ourselves, how will we learn?

Now, let me make one thing very clear.  I’m not trying to blame autistic children from becoming dependent.  If someone is offering you help, it’s only natural to accept it, even if this stops you from learning useful skills.

Furthermore, I’m not trying to suggest that autistic people are lazy.  On the contrary, as Grandin notes, we must work harder than others to get the same rewards!  In part, this is because we must cope with our autism symptoms, and in part, this is because of prejudice and discrimination against us.  People only have to look at a still image of an autistic person in order to judge us negatively (Grossman, 2015; Sasson et al., 2017): something subtle in our style makes others look down on us.  Moreover, many of us will have do this hard work whilst bearing the weight of enormous mental health challenges.  Many autistic teens will already be burning themselves out by attending school every day, enduring sensory distress, enduring isolation, enduring victimization, and enduring a world that is filled with people unlike them.  By the time they enter adulthood, they will be out of energy.

But even if we don’t assign blame, it’s difficult to deny the problem.  Autistic people must work harder than others to get the same rewards.  To succeed in life, we must prevail against the odds, drawing on our reserves of tenacity and determination to do so.  But instead of being taught independence and grit and tenacity, many of us are being taught dependence.

Preparing for Independence

How do we ensure that autistic children are prepared for independence?  It’s not easy!  We must find a difficult balance.  We must allow learning from failure, but we can’t allow serious failures that will disrupt the individual’s life trajectory or mental health.  We must ensure that young people are aware of the challenges ahead of them, but we can’t let them think we expect anything less than their success in overcoming these obstacles.  We must find time to teach independence, even when we’re already juggling demands of school, homework, interventions, and finding time to pursue intense interests or form social connections.

But this balance can be found.

Whatever the autistic person’s path, it’s absolutely crucial that those around them should have positive expectations.  Parents need to show through their actions and words that they fully expect the autistic person to succeed.  This doesn’t mean that we should always be positive – on the contrary!  My own parents were entirely confident that I would go to university and get good marks there, but they didn’t show this confidence by just telling me how smart I was and how I could do anything I put my mind to.  They told me that when I went to university, I would need to be ready for this challenge, or that challenge.  They were able to warn me about the roadblocks ahead and prepare me for them, but they did so in a way that showed their complete confidence that I had the ability to overcome these challenges if I only applied myself and worked hard.

Another good idea is to get some kind of high school work experience.  For people with disabilities, early work experience is an important predictor of later work outcomes (Carter et al., 2012).  This can have a pretty huge effect – in one study, 87% of autistic students in a supported internship program were employed a year later, compared to 12% of the controls who didn’t receive the internship (Wehman et al., 2017).  It makes sense: if you get a job, you get to put it on your resume as job experience.  It also means you’ll have experience of how jobs work and, crucially, how to navigate the job search process.

Other goals will depend a lot on the individual and what sort of goals they’ll have in adulthood.  For example, are they going to college?  Well, then maybe we need to work on independent time management!  Are they going to be living independently?  That means another set of skills.

Finally, it’s absolutely crucial that young people should be prepared to advocate for themselves.  Parents sometimes have to advocate for appropriate supports and services for their children, but childhood services are still relatively accessible.  In adulthood, navigating the system to get just about any supports and services will require advocacy.  This requires that autistic adults must:

• Understand that they have a disability and be sufficiently comfortable in themselves not to fear the stigma of accessing available supports; and
• Understand the nature of their disability and be able to monitor themselves well enough to know when they need supports.

It’s a daunting challenge, but it is possible to prepare autistic people well for the realities of the adult world.

But after young autistics reach adulthood, we often have the opposite problem: we demand too much independence at once.  Thus, in Part II of this post, I’ll be speaking about the idea of staggering the transition to adulthood.

Footnotes

[1] Though in reality, of course, we simply have service systems that have organically evolved, more or less in parallel across most jurisdictions, in a manner that unfortunately happened to make autistic people’s lives difficult.

[2] The study only included autistic people with IQs over 70.

[3] I’ve written elsewhere about how I think autistic people with no co-occurring disabilities might have been better off, at least in some ways and relative to others around them, in the much more distant past, but that’s a different question entirely.  Also, my argument there is very speculative.

[4] On the other hand, mental health challenges seem to be more prevalent in the general population today than in the past, so it could very easily be the other way around.

References

Carter, E. W., Austin, D., & Trainor, A. A. (2012). Predictors of postschool employment outcomes for young adults with severe disabilities. Journal of Disability Policy Studies, 23(1), 50–63. https://doi.org/10.1177/1044207311414680

Grandin, T., & Duffy, K. (2004). Careers for individuals with Asperger syndrome and high-functioning autism. Shawnee Mission, KS: Autism Asperger Publishing.

Grossman, R. B. (2015). Judgments of social awkwardness from brief exposure to children with and without high-functioning autism. Autism, 19(5), 580–587. https://doi.org/10.1177/1362361314536937

Prince-Hughes, D. (2004). Songs of the gorilla nation: My journey through autism. New York: Three Rivers Press.

Rivera, G. (Reporter). (1972). The last great disgrace [Documentary]. Retrieved from http://index.geraldo.com/page/willowbrook

Robison, J. E. (2016). Switched on: A memoir of brain change and emotional awakening. New York: Spiegel & Grau.

Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific Reports, 7, 40700. https://doi.org/10.1038/srep40700

Szasz, T. S. (1970). The manufacture of madness: A comparative study of the inquisition and the mental health movement. New York: Harper & Row.

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

Twenge, J. M. (2014). Generation me: Why today’s young Americans are more confident, assertive, entitled—and more miserable than ever before (Rev. ed.). New York: Atria.

Twenge, J. M., & Park, H. (2017). The decline in adult activities among U.S. adolescents, 1976-2016. Child Development. Advance online publication. https://doi.org/10.1111/cdev.12930

Wehman, P., Schall, C. M., McDonough, J., Graham, C., Brooke, V., Riehle, J. E., … Avellone, L. (2017). Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism. Autism, 21(3), 276–290. https://doi.org/10.1177/1362361316635826

Williams, D. (1992). Nobody nowhere: The extraordinary biography of an autistic. New York: Times Books.