Creating Autistic suffering: In the beginning there was trauma
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning: Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us. We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article. There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.
This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.
This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).
Trauma
Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?
There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.
There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.
So, what constitutes trauma in Autistic people?
First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.
We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.
We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.
“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”
Rose, K. (2018)
Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.
“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”
Sinclair, J. (2020)
Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).
A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.
“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””
Wise, M. (2019)
Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.
Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.
Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.
Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile. I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.
Hernandez, P. (2021)
We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.
All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.
The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).
“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”
Milton, D. (2012)
This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).
Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.
An ABA practitioner physically holding our hands still, is a form of restraint.
But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.
Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.
David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.
It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.
Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.
What does all this lead to?
Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.
The next piece in this series will explore the systemic failings in identification and lack of accessibility.
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives.
I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way.
With experience, passion, and an individualised approach in close collaboration with families, I help them work towards holistic child and family-centered solution
Bibliography
Adkin, T. (2021) Behaviourism damages Autistic children. tanyaadkin.co.uk
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.
Farahar, C. and Gray-Hammond, D. (2021) Autistic people and crime. Aucademy. YouTube.
Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.
Garfinkel, H. (1967). Ethnomethodology. Englewood Cliffs.
Gray-Hammond, D. (2020) Autism and the future of diagnostic criteria. emergentdivergence.com
Gray-Hammond, D. (2020) My experience of restraint in a psychiatric hospital: This is not a love story. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Halle, M. and Cardy, P (2021) ‘Overreaction’: Autistic son handcuffed by police on first day of term at Notts academy. Nottingham Post
Hernandez, P. (2021) Who am i? nottootrapped.wordpress.com
Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. https://doi.org/10.1177/1362361312474121
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887.
Parry, H. (2015). Shocking rise of «mate crime»: How children with autism or Asperger’s are being bullied, abused and robbed by so-called friends.
Pearson, A., & Forster, S. (2019). Lived Experience of Friendship and Mate Crime in Autistic Adults.
Rose, K. (2018) An Autistic Invalidation. theautisticadvocate.com
Sinclair, J. (2020) Autism exploitation: How to spot it and how to make it stop. autisticandunapologetic.com
Vance, T. (2019) #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Walker, N., Farahar, C., Thompson, H. (2021) What is neurodiversity & why’s it important? Nick Walker with Chloe & Harry: Aucademy in discussion. Aucademy. YouTube.
Wise, M. (2019) The long term impact of bullying. Neuroclastic. Neuroclastic.com
Zarse, E. M., Neff, M. R., Yoder, R., Hulvershorn, L., Chambers, J. E., & Chambers, R. A. (2019). The adverse childhood experiences questionnaire: two decades of research on childhood trauma as a primary cause of adult mental illness, addiction, and medical diseases. Cogent Medicine, 6(1), 1581447.
I totally agree with what the article is saying but it doesn’t offer solutions. Who is going to read this? Those who have autism or those who work with or support autistics. You’re preaching to the converted. I’m undiagnosed autistic woman who is also an alcoholic, now with 15 years in recovery. I have a diagnosed autistic son (12) and an undiagnosed autistic daughter (10). I see and experience the trauma and results of the trauma daily. I’ve been lucky enough to be able to take both my children out of school and home educate them, they are infinately happier and more settled and will not be going back into the system. They are learning daily, in their own way and without pressure, what the real world is like and how to live in it.
Schools are given training in autism but mainly it is in how to make the behaviour more palatable to others. Schools have to get everyone to fit in the box because the education system is designed as a one size fits all model.
We are not training neurotypical people in general to understand autistic people better. The number of people diagnosed as autistic is rising and yet we still marginalize them. If we don’t help autistics change their behaviours in some way then they will always be exploited or isolated and rejected. But of course trying to change the behaviour means more trauma as thus article points out. Rather than training teachers to spot and correct we could train peers and teachers to spot and accept, maybe they could adapt their behaviour which is easier for neurotypicals to do, and make this whole world a bit more autism friendly. Compulsary training could be given to those in particularly in public facing roles. It’ll take time to change the system and people but if we don’t start now, when?
Thank you for your comment. We are intending for this to be a series, and it is likely we will end that series with a piece on what can be done.
That’s great news, I look forward to reading the rest of the series. Thank you.