This entry is part 1 of 15 in the series Creating Autistic SufferingThis 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…

Creating Autistic suffering: In the beginning there was trauma

This entry is part 1 of 15 in the series Creating Autistic Suffering

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 โ€“ 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 didnโ€™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 โ€œmarked.โ€”

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 problemโ€™ refers to a breach in the โ€˜natural attitudeโ€™ (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.

Walker, N. (2021)

The next piece in this series will explore the systemic failings in identification and lack of accessibility.

Tanya Adkin

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.

โ€‹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.

โ€‹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.

โ€‹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), 223โ€“232. https://doi.org/10.1177/1362361312474121

Milton, D. E. (2012). On the ontological status of autism: the โ€˜double empathy problemโ€™. Disability & Society, 27(6), 883-887.

Parry, H. (2015). Shocking rise of ยซmate crimeยป: How children with autism or Aspergerโ€™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.

Series NavigationCreating Autistic suffering: Failures in identification >>

42 responses to “Creating Autistic suffering: In the beginning there was trauma”

  1. Tara avatar
    Tara

    I totally agree with what the article is saying but it doesnโ€™t offer solutions. Who is going to read this? Those who have autism or those who work with or support autistics. Youโ€™re preaching to the converted. Iโ€™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. Iโ€™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 donโ€™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. Itโ€™ll take time to change the system and people but if we donโ€™t start now, when?

    1. David Gray-Hammond avatar

      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.

  2. Tara avatar
    Tara

    That’s great news, I look forward to reading the rest of the series. Thank you.

  3. [โ€ฆ] Unfortunately all of these issues in autism theory lead to a lack of identification, which in itself is a passport to support. Without our needs being met by that support, we enter a world where Autistics are so traumatised that it is difficult to identify what an untraumatised Autistic person may look like. The diagnostic criteria itself is based on Autistic people in distress (Gray-Hammond, D. and Adkin, T.; 2021). [โ€ฆ]

  4. […] The stories above are just three very recent examples of police brutality against DISABLED CHILDREN. These are the ones that are privleged enough to have formal recognition of their neurodivergence. These are the ones who were lucky enough not to be institutionalised. What about the people labelled as “naughty”, “aggressive”, “feral”, “defiant”. What about those mislabelled mentally ill? If we are left unrecognised (read more here) and with these labels for long enough, we can develop mental health conditions. It’s inevitable, you can read more about this here. […]

  5. […] article series in question can be found at emergentdivergence.com, we currently have articles on trauma, failures in identification, and ableism and discrimination. There is also a podcast on […]

  6. […] D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there wasย trauma. […]

  7. [โ€ฆ] to the extensive trauma that we experience as Autistics in our formative years, many of us find ourselves seeking [โ€ฆ]

  8. [โ€ฆ] To read more about issues raised in this article, please see the Creating Autistic Suffering series on this website, the first article of which can be found here. [โ€ฆ]

  9. [โ€ฆ] To read more about issues raised in this article, please see the Creating Autistic Suffering series on this website, the first article of which can be found here. [โ€ฆ]

  10. […] D & Adkin T (2021) Creating Autistic Suffering: In the Beginning there was trauma. Emergent […]

  11. […] D & Adkin T (2021) Creating Autistic Suffering: In the Beginning there was trauma. Emergent […]

  12. […] environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our […]

  13. […] work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does […]

  14. […] work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does […]

  15. […] Autistic people experience ALOT of trauma over their lives. […]

  16. […] Autistic people experience ALOT of trauma over their lives. […]

  17. […] It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might […]

  18. […] It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might […]

  19. [โ€ฆ] There is a significant link between trauma, addiction, psychological distress, and perceived challenging behaviour. Trauma underlies all of these things. At this point I feel it necessary to highlight that Autistic people are More likely to experience PTSD. I have also explored our relationship with trauma with Tanya Adkin in a wider context here. [โ€ฆ]

  20. [โ€ฆ] There is a significant link between trauma, addiction, psychological distress, and perceived challenging behaviour. Trauma underlies all of these things. At this point I feel it necessary to highlight that Autistic people are More likely to experience PTSD. I have also explored our relationship with trauma with Tanya Adkin in a wider context here. [โ€ฆ]

  21. [โ€ฆ] neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to [โ€ฆ]

  22. […] neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to […]

  23. [โ€ฆ] by the neuronormative standard of what is allowed to be viewed as traumatic. The truth is that trauma can look different for Autistic people. Trauma that often lands our children on a CAMHS waiting [โ€ฆ]

  24. […] by the neuronormative standard of what is allowed to be viewed as traumatic. The truth is that trauma can look different for Autistic people. Trauma that often lands our children on a CAMHS waiting […]

  25. […] can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely […]

  26. [โ€ฆ] Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesnโ€™t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021). [โ€ฆ]

  27. [โ€ฆ] trauma, which we know that Autistic people experience at a higher rate than non-Autistic people (Gray-Hammond & Adkin, 2023). It is the way it maintains a state of high alert on the look out for threat. Itโ€™s a [โ€ฆ]

  28. […] community. There have been numerous suggestions for the cause of this, but my opinion is that trauma and lack of access to appropriate diagnostic and post-diagnostic support is a big driving […]

  29. [โ€ฆ] community. There have been numerous suggestions for the cause of this, but my opinion is that trauma and lack of access to appropriate diagnostic and post-diagnostic support is a big driving [โ€ฆ]

  30. [โ€ฆ] children and young people, like any young people, experience suicidal thoughts. In fact, due to the high rates of trauma in the Autistic experience of life, we are more likely to experience such thoughts. Despite this, [โ€ฆ]

  31. […] Autistic people experience much higher rates of trauma than the general population. Trauma almost inevitably leads to mental health issues. From depression to psychotic disorders; these diagnoses keep us tethered to the systems of the pathology paradigm. […]

  32. […] the cumulative effects of systemic discrimination and oppression, we begin to see a world where in being Autistic almost becomes synonymous with being traumatised in some […]

  33. […] people are exposed to inordinately high rates of trauma and mistreatment. It is unsurprising then that a large portion of us develop mental health […]

  34. […] research ignores the possibility of parents being Autistic and having their own previous trauma (Gray-Hammond & Adkin, 2021). Again, the blame unfairly sits with the Autistic young person who must take responsibility not […]

  35. [โ€ฆ] live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of [โ€ฆ]

  36. […] This could be for a number of reasons, but I believe that trauma plays the biggest role in this. Autistic young people and adults experience traumatic events at a higher rate than non-Autistic people. From communication invalidation, to sensory trauma, even […]

  37. […] but to my mind it has to do with our pattern recognition skills. Autistic people grow up in a world that is inherently traumatic, and learn to predict outcomes in order to defend the small amount of wellbeing afforded to […]

  38. […] contributory factor is the various ways Autistic children can be traumatised (more on this here). School represents a place where students are exposed to sensory trauma, invalidation, and […]

  39. […] people experience a varied and frequent stream of traumatic life events. The outcome of this is demonstrated in the 70%+ of Autistic people who will experience a mental […]

  40. […] Meyer (2003) conceptualises the minority stress model as arising from a discrepancy between a minority cultures values and the views and actions of wider society. While this was originally applied to sexual minorities, it is also applicable for disabled and neurodivergent communities. The collective discrimination we experience contribute to minority stress, also the increased rates of trauma as a result (more on trauma by clicking here). […]

  41. […] being a trait of autism. Anxiety though is separate to autism. We experience anxiety because of the high rates of trauma in our community. If you read the criteria for autism in both the DSM and ICD diagnostic manuals, anxiety is not a […]

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