As I discussed in my recent article about co-occurring conditions, the diagnostic process in psychiatry is inherently flawed on the basis that we have failed to find any meaningful relationship between the so-called “symptoms” of psychiatric conditions, and physical biomarkers which can be measured. Despite this lack of physiological cause, we are still diagnosing people as mentally “ill”. Despite this model not improving outcomes for around half a century.
So now we are faced with the issue of how diagnosis is not just given, but also how it is given responsibly.
One of the biggest flaws of psychiatry is the circular logic that dominates the diagnostic process. A person is Schizophrenic because they have symptoms of Schizophrenia, and they have those symptoms because they are Schizophrenic. This logic does not allow for a nuanced understanding of why a person may experience this particular cluster of traits, it simply follows that A = B, which is because of A.
If this is the case, how does one escape from circular logic?
We have to look for causes for traits and “symptoms” outside of the realm of medicine. While I have often remarked that external factors are the only thing with a meaningful relationship to these experiences, medicine is yet to catch up. It seems reasonable to assume that traumatic experiences are the cause of psychiatric conditions and not a problem within the body. This has ramifications for the future of psychiatry.
If people are not “unwell”, psychiatry now has a moral duty to advocate for it’s patients. Psychiatry needs to evolve into a tool for social change, and cease to be a weapon wielded by normative society. Beyond this, psychiatry needs an understanding of the relationships between neurodivergence, trauma, and psychological distress. It is not enough for psychiatrists to bandage the wound, they need to remove the knife from the hand of society.
This requires us to radically rethink our entire perspective on normality and cultural normative standards. We can not just medicate people and expect them to assimilate into society. We need to help them understand their own unique space in the environment and how to embrace their journey through that space.
As I discuss in my bookA Treatise on Chaos, identity is a shifting and ever changing value. We are, at our core, beings of chaos. Psychiatry needs to be a tool for supporting us in the more challenging parts of that chaos, and not serve as a ring-fence around the Self.
Psychiatry is not completely off the trail. Medication can serve as an important tool to support a person’s wellbeing, and can be very helpful for reducing the more troubling and distressing aspects of psychological distress. The most important thing is that we all put in the work to evolve psychiatry and mental health support into a means to challenge the oppressive systems that exist within our world.
It’s time to stop the navel-gazing, and build a better future.
This article was Co-Authored by David Gray-Hammond and Katie Munday
Trigger Warning: Discussion of mental health
It is a surprisingly contentious discussion to have, but the neurodiversity paradigm does not just apply to autistic people and ADHD’ers. Neurodivergent is a broad and inclusive term that applies to any bodymind that diverges from the neuronormative standards of a person’s given culture. This includes, but is not limited to;
Cerebral Palsy
Epilepsy
Down Syndrome
Traumatic Brain Injury
Learning Disability
Foetal Alcohol Syndrome
The list could go on for some time.
Something else that needs to be included on this list is the plethora of psychiatric diagnoses that exist, currently standing at over 300 in the DSM 5. It becomes apparent that there are far more than a handful of ways to be neurodivergent. Let’s not forget about the people who are multiply neurodivergent, existing in the overlap between multiple shared experiences.
This is what neurodivergence is, it is shared experience amounting to identity and culture.
Some of this shared experience is wonderful, there is a beauty to be found in neurodivergent communities. However, some of the experience is truly awful; the truth is that we (the authors of this article) would have to think really hard if we were offered a magic pill that would take away our negative mental health experiences. Things such as;
Intrusive Thoughts
Rumination
Paranoia and Anxiety
Incapacitating Depression
There is a balance to be found between “how much of this is me, and how much of this is something that is happening to me?”. There is a lot more to be said for the effect that our environment has on us.
So, how does one authentically embody the entirety of their neuropsychological experience?
We can embody our full-selves by accepting that sometimes, we need to step away, and allow space to exist with whatever we are feeling at the time. Feelings come and go, it is necessary to observe and acknowledge those feelings without judgement of yourself.
One of the main issues with this is that when you have mental health concerns, we have a tendency to judge that part of our lives as a wholly negative experience. Understandably, it can be very difficult to identify positives when the world focuses on perceived deficit and disorder.
Some of the positives we have found are;
Intense creativity
Self-awareness and introspection
Increased empathy
Intense positive experiences to offset the negatives
Greater attitudes of acceptance
In order to authentically embody our entire neurocognition, we first have to learn to co-exist with all of our experiences. This requires a level of acceptance that not everything will be wholly positive or negative. Self-acceptance is a radical notion, not necessarily in the traditional sense, more so in the way it changes our outlook on life. The boundary between neurology and the mind is so obscure that a change in one can alter the other.
Embracing our negative experiences is only a part of this. We are well aware of how harmful toxic positivity can be. Not everything is okay, and nor should it be, especially when experiencing trauma. We have to learn to co-exist with ourselves, that doesn’t mean we have to find enjoyment in every aspect of our inner and outer world. We need to show up for ourselves by giving our inner-self the same grace that we afford others.
Things aren’t always okay, but with a little self-compassion they can be better. It is an aggressively neutral thing, being neurodivergent.
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.”
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.”
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.””
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.
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.
Walker, N. (2021)
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’sservice, 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 withfamilies, I help them work towards holisticchild 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.
My name is David, and I have to take a ton of medication to stay healthy.
It’s taken years to find the balance, and recently, one of the main medications has had to be changed.
Currently I am taking aripiprazole, paliperidone, mirtazapine, trazodone, promethazine and propranolol for my mental health (although the paliperidone will soon be discontinued, and the aripiprazole dose increased).
I also take procyclidine and rosuvastatin for the side effects of my medications.
I’m autistic and have complex mental health conditions. I’m stable, but it’s taken a long journey through various medications and talking therapies to get here. My autistic brain is sensitive to changes, so I have endured a lot of side effects.
Why did I endure it?
I wanted to get better.
I realised that if I wanted to feel better and be better, I had to listen to what the experts were telling me. There has been a lot of trial and error, but I am now in a place where, even though difficult things are still happening due to outside forces, I am happy.
I have walked away from people who shame me for taking meds. I don’t need them in my life. For some of us, medication is a prerequisite of life. Finding that balance however, can be a nightmare.
My autistic brain doesn’t react typically to anything, and there is little to no research on many of these medications in autistic people. For this reason, it’s taken me over a decade to get to where I am.
My psychiatrist deserves a bloody Nobel prize. He has worked in the dark to make me well again. What we have achieved together is nothing short of a miracle.
My advice for anyone struggling with mental health is to work with your doctor. Use their expertise. Discuss how it makes you feel. It’s tricky, but you have to give a certain level of trust.
Medication is a lifeline that everyone should have access to, and I will never allow people to be shamed for it on my platforms.
We need to work together to destroy the stigma surrounding medication.
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