August 2018

I’m not suicidal (I have my days where if the world ended I might not do more than shrug, but I’ve no interest in hastening the event), but buried in the Discussion section of a new study on suicide among autistic adults is a look at camouflaging that concerns me.

Camouflaging significantly predicted suicidality in the ASC group, after controlling for age, sex, presence of at least one developmental condition, depression, anxiety, employment, and satisfaction with living arrangements. Camouflaging and age of ASC diagnosis, and suicidality and age of ASC diagnosis were not significantly correlated. This suggests that camouflaging is directly associated with suicidality rather than in combination with delay in ASC diagnosis. Camouflaging also explained significant additional variance in suicidality above depression or anxiety, suggesting that the association with suicidality is, at least in part, independent of mental health. This is the first evidence of camouflaging being a unique independent risk factor for suicidality in ASC.

In order to engage in camouflaging, one must have insight into one’s own difficulties, how these may be negatively perceived by others, and have a strong motivation to adapt one’s social behaviour to be accepted. Understanding associations between these factors with camouflaging, and the consequent impact on mental health would be valuable. For example, autistic people who have greater insight into their own difficulties are more likely to be depressed than those with less insight, and autistic people are able to accurately predict how family members perceive them, despite being different to their own view. It would be interesting to explore whether perspective taking ability and insight into one’s own difficulties increase likelihood of engaging in camouflaging behaviour with consequent negative impact on mental health and suicidality.

Emphasis added because I quarrel with that particular statement and the particular view of camouflaging that it espouses.

When you are not diagnosed until, say, midlife, you in fact likely spent decades *without* much in the way of “insight in one’s own difficulties”, yet you likely spent much, of not most (or, for some, all) of those decades camouflaging just due to society’s background radiation of conformity.

One thing I’ve been pondering lately is the idea that society has a sort of background radiation of conformity. So, even if you don’t know you’re autistic, you conform unconsciously because you’ve been “irradiated”, unless you have the sheer self-awareness and strength of will to resist. That’s how you go four decades camouflaging, masking, passing without knowing — and then hit midlife and wonder why the hell all of these routine things about the world suddenly hurt so much.

It’s problematic, then, if not potentially dangerous, for researchers or practitioners to think of camouflaging purely or solely as a conscious and deliberate act. We need research and practice to consider the implications and impact both of intentional masking on the part of autistic people with a diagnosis *and* unintentional conformity on the part of autistic people who didn’t yet know they in fact are autistic.

The latter, by its nature, mostly comes into play only once you receive a diagnosis. It’s then a matter of retroactively and retrospectively looking back at your pre-diagnosis life to try to see where you might have lucked out in being a part of environments where your differences happenstantially were accepted and where instead you might have been subject to that background radiation of conformity.

“It would be interesting,” say the study’s authors, “to explore whether perspective taking ability and insight into one’s own difficulties increase likelihood of engaging in camouflaging behaviour with consequent negative impact on mental health and suicidality.”

How many people does this leave out of the equation?

Everyone, autistic or not, is subject to that conformist background radiation to one extent or another, but it’s going to have a greater deleterious effect upon autistic people. Camouflaging comes with risks, and both short-term and long-term harms, regardless of whether you knew at the time that it was happening. Surely if camouflaging brings “negative impact on mental health”, it’s worth also specifically looking into what effects unknowingly camouflaging had on late-diagnosed autistics?

If researchers and practitioners define camouflaging as something that only results from “perspective taking ability and insight into one’s own difficulties”, they are leaving behind all of us who spent decades not knowing we were autistic.

It’s already tough enough, being diagnosed in midlife. Researchers and practitioners shouldn’t make it worse by leaving us out.

There are two ways to get Social Security Disability Insurance (SSDI) benefits, more or less.

  1. Accumulate enough of your own “work credits” before becoming too disabled to work, in essence having paid into the system enough to receive benefits.
  2. Become disabled before the age of 22 and have benefits calculated based upon the “work credits” accumulated by a parent, a scenario in which you are considered a “disabled adult child”.

On the other hand, if you happen to be a *late-diagnosed* autistic person who during the previous three decades did your best to be an employed and employable adult, not knowing that there were actual, diagnosable reasons for your difficulty in achieving this goal, you most likely are shit out of luck.

Social Security will deny you on both counts.

Literally, you will have not worked enough to receive benefits based upon your own work history, but also will have worked too much to be considered having been disabled prior to the age of 22.

If you, your family, and the world around you all agreed, for all those decades, that you were “normal” but for some reason were just some sort of failure or fuck-up that couldn’t seem to get, or hold onto, a job, you kept trying and failing, over and over and over, because the “normal” thing to do was to get, and keep, a job. In the process — because you didn’t know, for all those decades, that you could have lived a life in which you, your family, and the world around you instead knew there was a diagnosis out there which explained so many things, one the having of which might have meant being able to insist upon ways to both accomodate and mitigate those things — in reality you were subjecting yourself to stresses and pressures and environments that likely *added* to your long-term problems and mental health issues.

So while you were technically disabled from birth, you didn’t know that, and you kept trying to do the same things everyone else did effortlessly, and trying to do them in the same ways in which everyone else did. You effectively and essentially hurt yourself, over and over, for decades.

Decades later, you have a diagnosis. There are, and were, reasons for so many of the difficulties experienced along that border between you and the outside world. But as far as Social Security is concerned, none of that matters. The fact that you hurt yourself for decades trying and failing to be what you weren’t, that doesn’t matter. The fact that you in some ways made your disability worse because you didn’t know it was there, and so acted like it didn’t exist, that doesn’t matter.

All that matters is that you did not work enough to receive benefits based upon your own work history, and also worked too much to be considered disabled before the age of 22.

If I can step back and be a bit meta: I know this post is disjointed. I know it’s terribly-written. I know it’s not clean. Today turned into shit (and not even because of what this post is about), and I don’t really care.

I know, also, that there’s nothing to be done about any of this.

My process of applying for SSI (which is paid out of general approproations, rather than tied to work history as with SSDI) continues, but the prospect of SSDI, and it’s potentially higher level of benefits, is dead.

However, once the official, written denial of my SSDI claim to be considered as a “disabled adult child” arrives, I *am* going to appeal that decision. Not for reconsideration, but simply in order to get Social Security to sign off on the above description of my circumstances as being substantively correct.

I just want them to admit to it. I want their official admission that this ridiculous, harmful irony indeed is the inevitable result of their purely mathematical policy.

Well, no. That’s not all I want.

I also want them to approve my SSI claim.

If I had been born, say, with some sort of muscle disease but didn’t know it until I was 46, and prior to that eventual diagnosis I was employed now and then, which was making it worse because I was working without knowing I should be seeking various accommodations for a disability, and did this until it laid me out, would Social Security still have decided that I’d not worked enough for SSDI, but also worked too much to be considered disabled before age 22 and so also not eligible under a parent?

The answer to that might very well have been the same, but it seems to me mildly barbarous for the official Social Security policy position to be, “If you didn’t know you were disabled so you spent your adulthood *trying* to be ‘normal’ but ‘failing’, you screwed yourself out of financial support both ways.”

Worse, I keep feeling like I got screwed by being a totally useless amount of autistic.

Either I should have been more autistic so it would have been obvious and my life would have been able to address it, or I should have been less autistic, so it might have not unknowingly, beg your pardon, fucked me.

That’s me, feeling mediocre all over, even when it comes to being actually autistic.

When you are actually autistic but late-diagnosed, you think a lot about whether or not you’ve been stimming for all those decades, or were suppressing your stimming because it didn’t match (as I’ve discussed before) society’s background radiation of conformity.

It’s clear to me now, from thinking about things over the last year, and also just trying to step back from myself, the myself that I was for four decades as an undiagnosed and unaware autistic person, and see if any stims surfaced on their own. What’s becomes clear to me is that a lot of my stims are in my hands. I don’t flap. I fidget. I rub the skin on my middle finger with my thumb, sometimes to the point of callouses. I’ll rub the tps of my thumb and forefinger together, in circles. I’ll interlace the fingers of both my hands and slide them in and out of each other.

Overnight, I realized how much of my stimming for the two decades of 1998 to 2008 probably went into smoking.

Not just the smoking itself. All its associated fidgets.

The tapping and packing of a freshly pulled out cigarette. The switching up how you’re holding one when its lit. The flicking of the lighter. In essence for two decades I had a sort of masked stimming, for lack of a better term. Stimming that was in the form of a thing many people, autistic and allistic alike, did as a matter of addictive course, and so unnoticed as my being autistic.

What’s interesting to me in retrosepct is that when I quit (cold turkey, exactly three days after my dad died, without a second thought or a look back), unlike many ex-smokers I didn’t need something to satisfy any lingering oral fixation. No toothpicks. No pen-chewing. No gum.

I did, however, keep my Zippo on me for years. I lit other people’s cigarettes, and continued distractedly flicking the lid open and closed. Looking at it now, it was to maintain the hand stimming I needed beyond my days as a smoker.

Mostly I find this reassuring.

When you are late-diagnosed (for me it was at 46) you experience a kind of autistic imposter syndrome. “How can I possibly be autistic, you think to yourself (a lot), “when I didn’t exhibit any of these things autistic people often exhibit, for all those decades?”

It turns out I did, but they were hidden in plain sight.