November 2018

I’d meant only to talk about one way in which I think we end up with late-diagnosed actually autistic adults, but while browsing the autism tag (which they seem finally to have purged of all the t-shirt and pirated ebook spam) ended up learning something new.

The only theory I’m aware of that seems to make a decent stab at explaining the many seemingly disparate features of autistic psychology — from inertia to communication problems to hyperfocus and spiky profiles — is monotropism. However, this theory (formulated by autistics who aren’t professional psychologists) has received relatively little attention from psychologists, and awaits direct empirical verification.

Naturally, I took a moment’s detour to Wikipedia for what it had to say about monotropism.

Monotropism is a cognitive strategy posited to be the central underlying feature of autism. A monotropic mind is one that focuses its attention on a small number of interests at any time, tending to miss things outside of this attention tunnel. The theory of monotropism was developed by Dr Dinah Murray, Wenn Lawson and Mike Lesser starting in the 1990s, and published about in the journal Autism in 2005.

All of which led me to that 2005 paper, the reading of which felt a great deal like it felt when I began to read other people talking about their autistic experiences in the year or two after my diagnosis. By which I mean there was lots of vigorous nodding.

To a person in an attention tunnel every unanticipated change is abrupt and is truly, if briefly, catastrophic: a complete disconnection from a previous safe state, a plunge into a meaningless blizzard of sensations, a frightening experience which may occur many times in a single day. Following such an episode it may take a long time for any other interest to emerge. The first basin of attraction to draw the interest is likely to be a familiar action which may replace any inclination to repeat the failed attempt.

Remarkably, just hours later while setting up a Quora account I discovered an article about a recent fMRI study that seems to show monotropism in autistic adults in action.

Thanks to the fMRI scans, the researchers were able to confirm that in the brains of people with autism, connections persist for more extended periods than they do in the brains of neurotypical individuals. In other words, in autism, the brain finds it harder to switch between processes.

There’s more, of course, in the findings themselves.

No significant correlations were found between measures of cognitive function and sustained connectivity in individuals with autism. However, a significant positive correlation was found between sustained connectivity and social impairment scores. Similarly, Rashid et al found a link between dynamic functional connectivity and autistic traits assessed using the SRS. These findings also dovetail with electrophysiological results showing delayed auditory evoked responses in autism suggesting temporal prolongation of steady-state responses to stimuli. Temporal smoothing of neural responses with prolonged brain states may also be consistent with another hypothesized physiological mechanism in autism, that of decreased ability for shifting of attention.

I’m thoroughly a layman, so it’s unclear to me how on the one hand the researchers state that no real links were found “between measures of cognitive function and sustained connectivity” and yet also suggest that their results might be consistent with “another hypothesized physiological mechanism in autism, that of decreased ability for shifting of attention” in autistics, since I would think that one aspect of cognitive functioning in fact is the ability to shift from the attentional tunnels discussed under monotropism, but mostly I am just sort of astonished that one the same day I learned about monotropism I also ran across an fMRI study that seems to support it, at least in part.

Really, it’s just that I’m now rapidly becoming a fan of monotropism as a potential way to explain and explore what the fuck the autistic brain is doing, and how, and why, and so you get two posts from me in two days after three months of radio silence.

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.