After my recent, somewhat abstract and theoretical post on neurodiversity, I thought it might be a good time to turn to something a little more practical.  I think it’s about time I wrote a post I should have written long ago: a rant about the expensive, inaccessible, disorganized, uncoordinated, under-capacity, and generally grossly inadequate system for diagnosing autistic adults.

I hear that jurisdictions in the UK are moving to make obtaining a diagnosis is a relatively accessible process.  But across every part of North America with which I am familiar, adult diagnosis is difficult or impossible to obtain.  In many jurisdictions, only a handful of people can provide a diagnosis for autistic adults, and even if one can obtain a referral to one of these people, the diagnosis often won’t be covered, and the autistic adult may end up paying thousands of dollars for an assessment.

I’m pretty sure that the true incidence of autism hasn’t changed all that much over time.  That means that the majority of autistic people today are undiagnosed adults.[1]

While some of these people may be doing very well in their adult lives, others may require support.  These supports might be very cost-effective: Chen and colleagues (2015) found that older autistic adults have better outcomes in employment programs than younger adults.  This makes some sense, since the older adults will presumably have figured out a lot of the expectations of the workplace and will presumably have more impressive resumes.  Thus, it’s possible that some of the costs of things like adult diagnostic services and employment supports could be recouped through greater employment success, which implies greater earnings and, ultimately, greater tax revenues for the government.  (See also Howlin et al., 2005).

Furthermore, for many people, the autism diagnosis is an essential part of their identity.  I was fortunate enough to be diagnosed relatively early (in childhood, anyway), but again and again, we see people getting diagnosed in their forties, their fifties, or their sixties.  These people have often spent years wondering why they are different from others, and ruminating over the possibility that there might be something wrong with them.  The diagnosis, once assimilated as a positive part of one’s identity, can put these questions to rest.

Ultimately, it just doesn’t make sense to simply pour more and more resources into trying to diagnose autism earlier and earlier in the preschool years: we also need to consider the needs of autistic people who were missed before.

We know that there are many undiagnosed autistic adults out there.  (I certainly know many self-diagnosed people who can’t get diagnoses, and there also seem to be plenty of formerly-undiagnosed people who recently managed to obtain diagnoses.)  We know that providing a diagnosis will help many of them.  We also know that it’s possible to set up a system to make diagnoses accessible, because the Brits are making progress in that department.  There’s nothing stopping us from doing the same.

Do you have feedback?  Thoughts?  Other good reasons for adult diagnostic services?  Please comment below!

Footnotes

[1] Which just highlights the dangers of fearmongering associated with the alleged “autism epidemic.”  Whenever we use that rhetoric, we’re also denying the existence – or at least the severity – of the problem of undiagnosed autistic adults.

References

Chen, J. L., Sung, C., & Pi, S. (2015). Vocational rehabilitation service patterns and outcomes for individuals with autism of different ages. Journal of Autism and Developmental Disorders, 45(9), 3015–3029. https://doi.org/10.1007/s10803-015-2465-y

Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism, 9(5), 533–549. https://doi.org/10.1177/1362361305057871