It's about Post Traumatic Stress Disorder ("PTSD"). This is a brain response to extreme trauma, for example a near-death experience, terrible injury, being present in some major disaster. There's a tick-box list of things that are alleged to cause it. If it's not in the tick-box list, often no-one is supposed to diagnose it as PTSD, even if the person is clearly traumatised. Strange but true.
That has failed an awful lot of autistic people, in my view.
So, this new research happened. The team found 59 autistic adults to take part in this study. The team wanted to find out what sort of traumatic things they had experienced, in their view, and whether the people now had symptoms suggesting they had PTSD.
This is one of the pictures from the research. It shows how many of the autistic people had experienced these things, finding them traumatic. This list is the usual things that cause PTSD (according to the medical lists).
But, the autistic people also listed these as also causing trauma, and these aren't on the usual lists for PTSD:
Many of them experienced bullying as causing immense trauma, for example. The team did a lot of deep thought about their findings. This is what they have written:
"A broader range of life events appear to be experienced as traumatic and may act as a catalyst for Post Traumatic Stress Disorder development in autistic adults. Assessment of trauma and PTSD... should consider possible non-DSM-5 traumas in this population, and PTSD diagnosis and treatment should not be withheld simply due to the atypicality of the experienced traumatic event."
In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting. And diagnostic teams should be considering PTSD after a wider list of possible triggering events.
"The rate of probable PTSD in our ASD participants following DSM-5 or non-DSM-5 traumas was similar, ranging from 43% to 45%"
So, nearly half of those in this study exposed to bullying/awful social exclusion etc may have PTSD.
Let's think about symptoms of PTSD. This isn't a full list, and people don't have to have every bit of it. If you want to look at the full diagnostic lists, this is one here
1. Recurrent, involuntary, and intrusive distressing memories of the traumatic event(s)
2. Recurrent distressing dreams about the events.
3. Flashbacks to what happened.
4. Panic at anything resembling a part of what happened.
5. Avoiding thinking about what happened.
6. Avoiding being near people or places that remind them of what happened.
7. Brain blanks out some detail of what happened.
8. Persistent negative emotional state (e.g., fear, horror, anger, guilt, or shame).
9. Possible irritable behaviour and angry outbursts (with little or no provocation), typically expressed as verbal or physical aggression toward people or objects.
10. Possible reckless or self-destructive behaviour.
11. Hypervigilance (always ultra-watchful for anything resembling what happened)
12. Exaggerated startle response.
Think about how many are subjected to awful things. There's good research on that. See the 'vital research links' blog at http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for a list of some of the main ones. (And a lot of modern info on autism. Gee whizz, did we ever have this wrong, eh?)
Think about how much we talk about 'challenging behaviour' or 'attention seeking'.
Think about how often we employ behaviour-control teams to ensure that the autistic people never ever show their internal trauma to anyone. Never run. Never hide. Never self-soothe. Never scream. Never cry. Never fail to concentrate. The belief-set that all of those responses are just ways to avoid working or being pleasant to others.
What are we doing?
I leave you with this question.
Thank you for reading.
If you would like support, after reading this post, the following organisations may be able to help in the UK:
https://youngminds.org.uk/find-help/get-urgent-help/#are-you-a-young-person-in-crisis? for young people
https://www.samaritans.org/how-we-can-help/contact-samaritan/ for adults
https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/about-ptsd/ about PTSD and links to support
In the USA, this may be a starting point for information and links to support