March 2019

This morning, Spectrum announced that a piece by Lauren Gravitz from last September had won second place in the Awards for Excellence in Health Care Journalism. That piece? “At the Intersection of Autism and Trauma”, a look at the links between autism spectrum disorder and post-traumatic stress disorder.

For almost two months, I have been looking for a way to follow up a post I wrote about the “mini-traumas” of the monotropic brain. My reaction to the Gravitz piece was so intensely visceral, I gave myself a stomach ache.

In my post about traumas, I suggested that a study indicating connections in the autistic brain are more persistent than those in neurotypical brains perhaps could helps explain the whys and hows of everything from sensory sensitivities to the itensity of meltdowns.

If the autistic/monotropic brain is one that holds onto connections for longer periods of time than typical brains, is there an avenue of inquiry here into whether or not that helps explain sensory sensitivities? A typical brain might be momentarily put off, say, by bright lights, but if the autistic brain essentially can’t shake things off is it possible that it’s dealing not just with the sensory input of the bright light in a single discrete moment, but instead cumulatively over the course of that moment, and the next one, and the next one? Could a brain that can’t switch tracks simply be holding onto its reaction to stimulus in a way that inevitably increases the pressure?

I wanted to know how such connection persistence might relate to how trauma is laid down in the brain, creating what the neurotypical world might view as autistic reactions and responses that don’t seem commensurate with or proportional to the stimulus or stressor at hand.

Along comes the Gravitz piece, which doesn’t necessarily directly attack that particular question but is in the same orbit.

Abuse, sexual assault, violence, natural disasters and wartime combat are all common causes of PTSD in the general population. Among autistic people, though, less extreme experiences — fire alarms, paperwork, the loss of a family pet, even a stranger’s offhand comment — can also be destabilizing. They can also be traumatized by others’ behavior toward them.

Then there’s the part that might have started me crying (which likely then later explains my stomach ache).

In speaking with participants about causes of trauma, she has heard “everything from sexual abuse, emotional abuse and horrendous bullying, to much broader concepts, like what it’s like to go around your whole life in a world where you have 50 percent less input than everyone else because you have social deficits. Or feeling constantly overwhelmed by sensory experience — feeling marginalized in our society because you’re somebody with differences.” In other words, she says, “the experience of having autism and the trauma associated with that.”

As I indicated above, when I asked my questions about autism amd trauma, I did so in that context of monotropism and the suggestion that autistic brains hold connections for longer, wondering if that’s a potential mechanism for trauma being laid down in the brain more easily. Gravitz asks the central question.

This line of research is still in its earliest days: It is still difficult to tease apart correlation from causation. In other words, does autism predispose someone to post-traumatic stress, or are people with autism more vulnerable to experiencing traumatic events? Or both? Scientists simply don’t know the answers yet — although some studies do indicate that autistic children are more reactive to stressful events and, because they lack the coping skills that help them calm down, perhaps predisposed to PTSD.

What I was positing in my earlier post perhaps was that it’s sort of a merging of those two ideas of predisposition and vulnerability. If our autistic brains’ connections are more persistent, stressors cut more deeply and make us more vulnerable not just to the current event but to future events triggering the sensation of that earlier psychological cut.

Gravitz and the people she spoke with for the piece rightfully are concerned not just with the potential links between autism and PTSD but how you treat an autistic person for that condition.

“There are a number of core features of autism that make usual psychotherapies somewhat more complicated,” Hoover says. Typical children tend to be reluctant to talk about their traumatic experiences, but they generally give in because they know it’s good for them, he says. “Children on the spectrum are often less willing — because they’re exceedingly anxious, and because they’re not able to see the forest for the trees.” He notes that autistic children can be so keyed into the present, and so tied to routine, that they have a difficult time participating in treatment that intensifies their anxiety in the moment, even when they know it might help in the long run.

It’s hardly just about autistic children, and there’s more to it than the above dscription, as those studies I’ve mentioned a few times about seem to indicate.

Traditional therapeutic forms, methods, and formats are socially performative and therefore themselves a potential (or, for me, a likely) additional autistic stressor. If autistic people indeed are both predisposed and more vulnerable to the laying down of trauma in their brains, the therapuetic process itself needs to take care not to introduce further trauma.

I suppose that when I was thinking about “the mini-traumas of the monotropic brain”, I must not have googled for autism and PTSD, else I would have found the Gravitz piece earlier. So I’d like to thank the Association of Health Care Journalists for giving it an award, which gave Spectrum a reason to post about it, bringing it to my attention.

Along with also, of course, thanking Lauren Gravitz for writing it, I hope that she follows up on it at a later date, perhaps looking into whether there indeed are links between those “persistent connection” studies and the traumas of autism.

One of my big issues these days is whether or not forms of psychotherapy designed for the typical necessarily work for the atypical. It popped up again this week in a Spectrum piece on OCD and autism.

Three of the callers mention CBT, which can help people understand and manage their obsessions and compulsions. As with other talk therapies, though, CBT isn’t always effective for people with autism. The therapy did not help Slavin, for example.

He suspects that he was unable to follow his therapist’s approach due to his auditory-processing difficulties and cognitive inflexibility, which he attributes to his autism. “Many people on the spectrum have a problem picturing a situation and picturing how it could have a different outcome, so traditional CBT doesn’t always work,” he says.

A couple of things to mention here.

First, I note that the first part of the above acknowledges that, in general, traditional talk therapy does not necessarily just transfer over to the neuroatypical, which is an acknowledgement of which I would love to see more. Second, that bit about “picturing a situation and picturing how it could have a different outcome” directly relates to things I’ve written before about stimuli, reaction, and response.

Lately I have once again been browsing around for therapists or counselors covered by Health Share of Oregon (my OHP coordinated care organization) who have experience with and knowledge of the autistic, especially when it comes to adults, even more especially if it’s with the late-diagnosed. It’s increasingly evident that this search very well could be an impossible mission.

Just the other day I happenstantially ran across a survey from a (potentially dormant?) group called OHP Mental Health Providers for Quality Care specifically asked Health Share members if they’ve “experienced challenges accessing mental health care”.

Why, yes. Yes, I have.

When I search for therapists or counselors who deal with autistic people, I pretty much assume that anyone who emphasizes “social skills” or “coping skills” is focused on helping autistic people mask better, not, say, helping them know how to recognize when their limits might be approaching.

I don’t need “coping skills”, per se, barring maybe developing a more well-honed sense of when I’m in a moment where I can just yell a “motherfuck” or two, stop and stare at the floor, breathe, and then move on rather than escalating things by throwing my broom and dustpan or my travel mug across the room.

Just the other day I had two household mishaps, one involving a broom and some spilled cat litter, and one involving a travel mug with a stuck lid. That I managed in each instance not to escalate is evidence that I’m already honing this particular “coping skill”, but these also were circumstances in which these moments were the only pressuring stimuli I was dealing with. Not having been surrounded by stressors, I was able to make these moments ones of stimulus-reaction-pause-response rather than stimulus-reaction-is-response.

I need a therapist or counselor, however, who understands that while such moments are possible, there also will be situations where “mindfully” being able to grab that beat, that pause, will be completely impossible. Shutdowns and meltdowns are going to happen, whatever the surrounding typical world might think of them.

If we’re talking about developing “skills”, isn’t the necessary skill here maybe more about developing a better sense of how many spoons you think you might have for any given day, adding some wiggle room, and then laying out your day accordingly? But then also recognizing that sometimes the world is going to overwhelm you and when it does you should feel neither shame nor guilt about it?

The other day I saw the website of a therapist who talked up neurodiversity but had autism listed under the heading of “learning disabilities”–technically “differences” but that’s what people say when they don’t feel comfortable using the word “disability”. Thing is, autism is a disability, but it’s not a learning disability. Throw around the word “neurodiversity” on your website all you want, but if you think autism is a learning disability, I want nothing to do with you.

Here’s the thing.

I need therapists and counselors specifically to define what they mean by “social skills” and “coping skills”. If what they mean is developing better camouflage because that’s supposed to make it easier for me to move through the world, then they don’t understand a thing about what’s actually going to help autistic people. For many of us, masking is a form of self-harm.

If by “coping skills” you mean the sorts of things I outlined above, maybe we’d have something to work with. If by “social skills” you mean, say, mapping out ways to express to other people that I’m having a really difficult day and can they please not impose upon me at the moment, and do so in a manner that’s both adequate to my own needs but not needlessly brusque to others, maybe we’d have something to work with.

But if by social and coping skills you’re talking about how to move through the world without overly disturbing neurotypical standards, then you aren’t engaged in psychology or social work, you instead are engaged in a form of social control.

These professions and these activities should not be thought of solely as efforts to heal and help the individual, but to heal and help the society around the individual. As much as they have the responsiblity to help the atypical learn how to move through the typical world around them as authentically and with as little self-damage and distress as possible, they also have the responsiblity to teach the typical to empathetically make more room in society for the atypical. They ought not only be private actors but also public ones.

There’s an old and semi-apocryphal aphorism that the job of a newspaper is “to comfort the afflicted and afflict the comfortable”. So, too, the job of the psychologist and the social worker, the therapist and the counselor.