This is the internet weblog of Bix Frankonis.

How Late-Diagnosed #ActuallyAutistic Adults Happen

Recently, I had to go for a new psychodiagnostic evaluation by an Oregon Department of Human Services contractor as part of the state’s disability determination services for Social Security benefits purposes. I’d mostly been avoiding thinking too much about being autistic because there are too many other things that need to be done right now.

Afterward, though, I ran across a paper by Laura Hull et al about developing a questionnaire about autistic camouflaging, and one part in particular stood out for me.

The Masking factor demonstrated the smallest difference between autistic and non-autistic samples in this analysis, suggesting that there may be more overlap between these two groups than for the other factors. Masking may be less specific to autism than the other components of camouflaging, and may reflect more general self-presentation or impression-management strategies applied to autistic characteristics. However, further research is needed to directly compare masking strategies and other self-presentation strategies in autistic and non-autistic samples to determine similarities and differences. In the autistic sample, masking was not significantly correlated with autistic-like traits, suggesting that it may be a response to the identification of being autistic rather than to the presence of specific autistic characteristics; in contrast, a significant positive relationship between the two was observed for the non-autistic sample, suggesting that the two groups may have been using masking strategies in response to different motivations.

This right here effectively seems related to my previous argument about the background radiation of social conformity that affects everyone being part of why I was not diagnosed as autistic until I was 46. In it, I suggested that contrary to the assertions of a different paper on autism, camouflaging is not inherently or intrinsically conscious.

Simply put, those “more general self-presentation or impression-management strategies” the paper suggests everyone has exist because society both expects and reinforces conformity.

In my case, since I’ve discovered that I am deferential to a first-instance demand even if it puts me at risk for a second-instance harm (e.g. rushing to accept my vocational rehabilitation job coach’s suggestion of a job placement despite not yet having even finished our job development work, a suggestion made in his closet-sized office that I just wanted to get out of), on both a larger and yet in a sense more subtle scale that’s in essence what I did for forty years.

I deferred to society’s conformist background radiation without even thinking about it.

Anyway, the paper in question reminded me of my earlier argument about conformity, because in it I took quarrel with a different paper’s assertion that camouflaging necessarily was a conscious activity. I simply don’t believe that’s true. Instead, I think that camouflaging, including neurotypical “self-presentation or impression-management strategies”, often can be just unconscious deference to the background radiation of social conformity.

With NT society itself engaged in a kind of camouflaging, and in cases like mine with a deference to near-term harm despite the potential longer-term consequences (whether I know this is what I’m doing or not), I think this clearly is one factor in how we get late-diagnosed autistic adults.

The crisis facing me now, that impacts both my future financial survival and my mental health, is that deferring to the demands of conformity for decades meant I tried so hard and yet so unsuccessfully to work without accomodation — because I didn’t know I needed it —means I’m likely screwed out of Social Security disability benefits (SSDI, not SSI).

(Technically, the entire SSDI issue still is in limbo. SSI is under evaluation. But to get SSDI, once I’ve officially applied and officially been denied, it would take an administrative law judge agreeing that my work history is almost entirely “Unsuccessful Work Attempts”, something I don’t even know if an administrative law judge has the leeway to do.)

Both the general discussion around adult autism and the ways in which eligibility for disability benefits is considered needs to incorporate the ways in which deferring to society’s conformist gravity (not to switch physical metaphors here) impact someone who was autistic all their lives without knowing it.

Finally having labels and reasons to attach to a lifetime of struggle was supposed to bring both clarity and progress. While the clarity can be found within the autistic adult, the progress needs understanding and action from without, by the very society whose insistence on conformity yielded a late diagnosis in the first place.