Friday, November 1, 2019

Being autistic... in September

Joelle Marie posts Being autistic... in September. on Thoughtistic

Content Warning for discussion of autistic vulnerability to suicide; no graphic detail, focus on outreach, prevention, and support

Being autistic... in September

September is for Suicide Prevention but also…?

Autistics feel like dying a lot too. (Not necessarily because we’re autistic.) I don’t see much about this during the month of September, though or any other time of the year.
I do feel like -regardless of the time of year- I’m constantly struggling to be heard as an individual with unexpected or “atypical presentation” of any goddamn thing. I’m involved in advocacy of various types and I’m open about my personal experiences pretty consistently so that feeling should be subsiding.
But it’s not. This month sucks.
It seems its my fault if I don’t put in the work to write something eloquent and well structured that people will want to read on top of ten other things pulling at my brain.
So, because things have felt challenging already for reasons that should become apparent, this is it:
As I wrote, autistic people kind of feel like dying. A lot. A lot more than could be predicted by statistics from “average populations”.
A recent study came out that brought attention to this but no one is really talking about it still. Not enough. There have only been a handful of representative studies done that deal with this subject and they are relatively recent. But the idea that if you are autistic the world can be such a brutal place that you are more likely to want to die is not new.
We know this.
When a person is forced to suppress their individual being every minute and then also told that it’s “better” to suppress coping mechanisms, they will eventually reach incredible levels of distress.
Autistics are told so much about themselves and asked so little. We are told:
You walk weird
You don’t talk right
You have to make eye contact
You make too much eye contact
Stop moving your hands
Unbunch your fists
Stop humming
You don’t listen
You don’t care
Talk louder, quieter, with more emotion, less “sing song”, MORE NORMAL
We are told that what we feel, what we intend to say, and what is best for us. If we disagree the assumption is that we simply don’t understand that “fitting in” will help in the long run.
But who is it actually helping?
The most popular mode of “treatment” does all of these things listed above and it is considered successful because it uses force, fear and anxiety to extinguish individual habits, behaviors, responses to environment- including the coping skills to manage the stressors often brought on by that environment.
The success of this “therapy” is judged by how comfortable other people are around us after we learn how to act like someone else, anyone else, 24/7. The evidence of this “evidence based treatment” is observation, not self-report. Actual self-report from autistics regarding this kind of protocol is largely ignored.
Autism carries a huge risk of self-harm, suicidal ideation and suicidal tendencies.
But don’t get me wrong- it isn’t specifically because of being autistic. Like any other group that is asked to deny, suppress and attempt to change fundamental parts of themselves- it is because of the constant rejection of autistics and the active demonstration that autism, and any part of an autistic person, is not ok.
The comfort of society as a whole consistently is put before the health, safety and well-being of autistic people.
That’s why we want to fucking die. I see so little about that.
I have pretty substantial suicidal ideation and have wanted to die at varying points in my life for varying reasons since I was about six. I didn’t know until the latter 3rd of my life that isn’t normal- at least not for neurotypical individuals. It IS extreme and just from my personal circle most I know who are on the spectrum have a similar experience. We go through incredible internal pain and extreme internal experience and then are called cold, uncaring, unfeeling, mean.
I grew into a better acceptance of myself and an incredible support system, but not everyone has that. Many don’t.
Like April, September is reminding me how little people want to listen. Can we change this? No one should be left behind.

Further Reading, etc

Hirvikoski T, Boman M, Chen Q, D’Onofrio BM, Mittendorfer-Rutz E, Lichtenstein P, Bölte S, Larsson H (2019). Individual risk and familial liability for suicide attempt and suicide in autism: a population- based study. Psychological Medicine 1–12.
Schuster, S. (2018). The People Suicide Prevention Leaves Behind. The Mighty.

Cassidy, S. and Rodgers, J. (2017). Understanding and prevention of suicide in autism. The Lancet Psychiatry, 4(6), p.e11.

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