Out this week is a new study published in Autism: The International Journal of Research & Practice, which, according to the press release, “demonstrates that there is an urgent need for tailored treatment pathways in mental health services for autistic people”. The group’s research, conducted in the United Kingdom, was “designed in partnership with autistic people, has strong implications for services, and [the] need for an autism specific mental health pathway”.
Reasons for this lack of treatment and support are complex. Mental health professionals and psychiatrists are generally not trained in recognising and understanding autism, meaning services are unprepared to adapt support and treatment to this group. There are also a lack of appropriate assessments to effectively identify mental health problems such as depression and suicidal feelings in autistic adults and a lack of appropriate adapted psychological therapies for autistic people.
Emphasis added because, well, I literally was talking about this just the other day after I dropped my new therapist.
There’s a difference, however, between, “Therapy can be hard.” and “The socially performative nature of therapy can be especially stressful for people whose condition can be in large degree about social communication and performance distress.” If a therapist doesn’t see this, I don’t know what they are doing.
While I’m not a fan of the use of “low” and “high” functioning labels (since these can change over the course of any given autistic person’s life, and can be different for any given person depending on the situation or task, and one can be “low” in some areas and “high” in others), among the things participants highlighted are that if you’re viewed as “high functioning”, or if you don’t have an intellectual disability in the mix, you’re less likely to be seen as needing any real kind of support.
Participants described how their need for support was dismissed due to non-autistic people’s (mis)perceptions of ‘high-functioning’ ASC (26 participants). Specifically, autistic people were viewed as ‘coping’ (474F), ‘functioning’ (56F) or ‘managing’ (28F) even when they were not because they were too ‘high-functioning’, independent, in employment or at University, which resulted in them being excluded from relevant treatment and support.
But back to the bit I emphasized because I’d just been talking about it here: “a lack of appropriate adapted psychological therapies for autistic people”.
Many participants felt a need for professionals to be better trained in autism to ‘realise it may not always be possible to accurately read a person with autism’ (120F). Participants felt that this up-skilling of autism knowledge was not their responsibility: ‘some of them have asked to borrow books from me about autism or asked me to teach them about it and I feel that shouldn’t be down to me’ (181F). These experiences suggest that professionals were often ‘well-meaning’ (176M) but lacked knowledge of the different way in which autistic people communicate and socially interact, and the implications for their treatment and support.
Emphasis added because this is what I was getting at. If the therapeutic process is structured from the same building blocks that create distress for my autistic brain in the outside non-autistic world in general, isn’t that a flaw in the therapeutic process? Can anyone truly argue that the best way to support autistic people is through engagement methods that cause them the selfsame distress they encounter everywhere else? There must be models of therapy built for autistic brains.
(A recent report out of Scotland found similar concerns, and specifically recommended developing treatments with autistic people in mind: “The majority of approaches to mental health care and treatment are developed through testing on non-autistic patients.”)
The gaslighting represented by telling me that “therapy can be hard” (which is what my now-former therapist said to me) is little more than thinking that therapeutic methods designed for neurotypicals are the only route for the atypical. It’s just more insistence that we bend in order to participate in the world around us.
In yesterday’s post, I took a brief tangent to criticize Dialectical Behavior Therapy and how its emphasis on “mindfulness” and “distress tolerance” seemed not to understand the autistic experience (or, at least, my autistic experience). DBT is an offshoot of Cognitive Behavioral Therapy, and in this study a full 22 participants took issue with using it for autism.
I had communication issues with each therapist because they expected me to be neurotypical, so I would take things too literally and they thought it was a defense mechanism, or I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception. (4F)
When reading about DBT, its emphasis upon “reframing your thoughts”, part of its “mindfulness” methods, was one of the things that was rankling me, and the above study participant nicely sums up the problem: “I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception”.
My concerns when it comes to finding a therapist ultimately come down to the fact that I can’t work with someone who whether by intent or “just” by the nature of the psychotherapeutic method, is telling me that things somehow are my fault. That all I have to do, e.g., is to learn the coping skill of “reframing my thoughts”.
No, what I need to do is escape the environment causing me distress, and perhaps never return to it. Therapy should not be one of the environments that I need to flee in order to protect my own brain from distress.
The study might be about mental health services in the U.K. but I do believe that many of the same dynamics are at play when it comes to provision of government benefits in the U.S. such as those administered by Social Security. I don’t have an intellectual disability, so my autism can’t be all that debilitating. I’ve worked in the past, and so (despite that work history being full of what, had I had a diagnosis when I was 16 or 26 instead of not until 46, easily would have been deemed at the time to be Unsuccessful Work Attempts by Social Security standards) that must mean I can work now.
For most of my life the issue appeared to be that I was a failure and fuck-up who just didn’t know how to apply myself. My diagnosis proved instead that I was an autistic person without any support.
If only psychotherapeutic methods and government benefits agencies would come to accept the latter instead of still seeing me as the former.