In my final post, at least for now, on the DSM-5 autism spectrum diagnostic criteria, I wanted to touch on the other elements outside Sections A and B as well as what it means to me to need support.
First, it’s important to note that Section A and B criteria can be manifested currently or by history. That’s why my complete meltdowns at changes in my room at a young age requiring psychiatric intervention are directly relevant. Moreover, elements of the criteria need to be in evidence from a young age. The autism spectrum is related to the way our brains work and it’s pretty much the way our brains are formed in utero. It’s highly genetic, but there’s some environmental influence. However, the environment in this case is in the womb or even earlier. There’s no evidence I’ve found of epigenetic triggers after birth. Since so many of the symptoms relate to active behavior and social interaction it’s usually not evident to parents and others until a child is at least 2-3 years old. And it’s been shown that autistic people can regress and lose skills they’ve managed to learn or have certain behaviors intensify at different points in life.
In order to be diagnosed, the symptoms as a whole must limit or impair everyday functioning in our broader neurotypical world in some way. I’ve probably coped amazingly well from the perspective of some autistic people. I know the counselor I’ve just started seeing often appears pretty surprised at my accomplishments. But as I hope my posts have shown, my functioning has still been limited and impaired pretty severely. We can try to imagine a world where the ways our brains work would not be limiting, but that’s not the world in which we live today. And in our actual world, it’s hard for me to imagine how anyone could be autistic and not struggle to function in at least some areas of their life.
And finally, the disturbances can’t be better explained by something else. In my case, I surprisingly don’t have any comorbidities that reach a diagnostic threshold. It seems that most autistic people at least have something like ADHD as well. In discussing my results, my diagnostician commented that I came as close to “pure autism” as anyone she has ever assessed. So there’s no other explanation for my experience.
And that moves us to the other feature of the DSM-5 criteria. Once you meet the diagnostic criteria, a level of severity for both Section A and Section B must be assigned. And those move from simply “requiring support” at level 1 to “requiring substantial support” at level 2 to “requiring very substantial support” at level 3. And that’s quite a range. It includes people like me who can mostly function independently all the way to people who require around the clock care.
I’m diagnosed at level 1 for both sections, so I’ve been reflecting on what it means for me to require support. In order to do that honestly, I’ve had to revise my own self-image. I’ve always considered myself highly capable and competent and I am in certain contexts. But I’ve also never lived alone for any significant period of time and if I’m brutally honest with myself, it’s not at all clear how well that would go. I’ve always had people who, even in an abusive relationship like my second marriage, still helped me manage day to day life. I’ve relied on my wife for most of my adult life (28 years, 26 married) far more than I’ve ever admitted or acknowledged even to myself. Could I have survived on my own? Probably? I think? But without that daily support, life would have been immensely more challenging. My life was undeniably something of a mess when she entered it.
And I’ve also received informal accommodation in different ways at work. I never thought of it that way. I just considered it negotiating the environment that would allow me to produce more effectively. And the results have been … impressive, I guess. When I get the circumstances right, I can accomplish quite a bit, which is probably why my employer has usually been fine with my idiosyncrasies. Results really do matter in my field. But it wouldn’t be honest to say I could have done what I’ve done without the support from those informal accommodations. I truly needed them in a way, again, that I never really acknowledged to myself.
It’s humbling to realize how much you’ve minimized the support you needed in daily life and exaggerated your self-sufficiency in your own mind. Nevertheless, I have to acknowledge that the description “requiring support” and the details in the associated table form a pretty accurate description of my life.
I do need support. And I always have.