We’re all pretty familiar about non-regressive autism that becomes obvious in the toddler years. It’s a well known narrative. The child just stops developing at the same rate as their non-autistic peers, and the skills gap gets noticed by the parents who seek a diagnosis. What’s incredibly odd about this narrative is that it assumes that we only experience a developmental delay in childhood.
Adult autistics often describe burnout during teenage or adulthood. We usually describe this as a result of the pressure to pass and the lack of accommodation, particularly in self-diagnosed or late-diagnosed autistic folks. Having had the time during another such burnout/major depressive episode/severe episode of fatigue, I’m puzzled as to why we don’t equate this with the presentation in children. Often, what we’re actually experiencing is a gap between our skills and the skills of our peers. There are more demands placed on us as a result of the transition to and through adulthood, much as there are new demands placed on young children as they grow. We know this, in the case of children, but seem to have forgotten that this happens to us as adults as well.
I never struggled in school. I had a little difficulty as a child with making friends and other social aspects, but I picked up things like language, reading and writing pretty quickly. I was ahead of the curve, performing in the top few percent for some time. As I went into the later years of high school, though, and then into university, my academic performance dropped. So too did my ability to manage all of the other demands. I suddenly had to cook for myself, manage my own finances. I had to schedule my own work, do all my own cleaning, and all the other delightful and time-consuming aspects of adulthood. Needless to say, I came down with fatigue, depression and anxiety quickly.
I struggled through the rest of university, and made it into the world of work, where even more trouble was waiting for me. I’d been worrying for a long time about my performance. Having been praised sporadically and mostly for my intelligence, my new difficulty with keeping up with everyone else was incredibly distressing. Most of my limited self-esteem was built around my academic performance. Suddenly being unable to cope sent me into another depressive cycle.
I thought, for a long time, that somehow my autism was “getting worse”, that I was losing skills. Having sat down and thought about it, I now see that’s not at all true. In ideal conditions, I still have the same skills as I had in childhood, however I’m now under more stress, there are more demands on my time and energy, and my peers have developed skills that I haven’t. I’m not regressing, I’m just not progressing.
Take for example that the school day is 9:15 to 3:15, with a long lunch break and morning and afternoon breaks, discarding the afternoon break in high school. The standard working day, however is 9:00 to 5:00, or 5:30 if you take a half-hour lunch break. That’s a heck of a change, on top of which one has to manage lunch, transport, daily chores, pursuing some kind of social life outside work, and finding an opportunity for physical exercise now one isn’t turfed out for a run-around after lunch.
I think this is something that needs to be talked about more. Developmental delay is not just for childhood. Even if you experience no noticeable delay during childhood, you may experience it during the transition to or during adulthood.