On Channel 4 in the UK there is currently a documentary from their dispatches series called “Locked Away: Our autism scandal”. This is a very upsetting documentary, and it has made one thing very clear to me. Autistic people are suffering at the hands of an oppressive mental health regime; we need to push back. The contents of this article may be very triggering for some people.
How many Autistic people are on psychiatric wards?
As of January 2023, there were 1,280 Autistic people on psychiatric wards (National Autistic Society). This is 1,280 chances to provide meaningful care, and yet I would hazard a guess that this has happened with none of them. Among the general population, those who have been held as psychiatric inpatients are 191 times more likely to die by suicide in the following months (National Institute for Health and Care Research). This is all-the-more concerning when we consider that while Autistic people represent 1% of the population, they represent 11% of suicides (Royal College of Psychiatrists).
Is inpatient treatment helpful for Autistic people?
I have written previously about the mistreatment that goes on in inpatient settings. I am far from the pnly person who feels Inpatient settings are inappropriate for Autistic people. The National Institute for Health and Care Excellence themselves have documents on their website stating that inpatient facilities have “lots of scope for improvement in autism friendliness”. Simply put, no, as it stands inpatient services are not helpful, and may even be detrimental for Autistic people.
My own experiences of being an Autistic inpatient
I have been an inpatient twice, in two different hospitals. The atmosphere is prison-like and hostile. The sensory environment is unbearable. There is a constant feeling that things could erupt at any moment, and staff make this worse.
Contraband such as alcohol and drugs flowed freely on the ward along with razor blades and other harmful items. Staff would use physical and chemical restraint to punish patients, and speak to us as if we were an inconvenience.
When I had reached the end of my patience with the environment (on my second stretch on the ward) I attempted to leave. I was told that if I tried to leave police would be called and I would be changed from a voluntary admission to an involuntary one. I now know this is an abuse of the mental health act.
I left the psychiatric ward in a worse state than I arrived. My care co-ordinator at the time would go on to state in my care plan that I should never be hospitalised again if possible. A difficult thing to write in the care plan of an Autistic Schizophrenic. I am still dealing with the fallout of the sheer quantity of medication they gave to me now, 7 years later.
Why is the inpatient system like this (concluding thoughts)?
Autistic people, particularly those of us with mental health concerns, are seen as sub-human. The system we live within views us as disposable and burdensome. We may have moved into an era of “care in the community” in the post-asylum era, but the attitudes of the old Bedlams are still very much with us. It is assumed that we will never be meaningful contributors to the world, and as such are the victims of a system that uses our mistreatment as an incentive to remain a good, tax-paying, law abiding citizen.
I personally will not stand for the mistreatment of my neurokin, it is time we pushed back and dismantled the systems that mistreat us. We need to throw away the masters tools and dismantle the house with tools of our own design.
One of the issues that autistic people face is the idea that autism is an “epidemic” occurring at higher and higher rates as time moves forward. While it is true that the number of diagnostic referrals (and diagnoses themselves) is increasing quite dramatically, the idea that autism is an epidemic is incredible harmful. It highlights the societal belied that autism is some kind of disease that poses a threat rather than being a natural variation in the human brain. In this article I hope to answer the question as to whether this is a fair analysis.
Genetic factors for autism
To understand the genetic factors around autism, I first bring to your attention studies conducted on twins. Frazier et al (2014) looked at heritability and environmental factors surrounding Autistic twins. They found that monozygotic (identical) twins were likely to both be Autistic, twice as like as dizygotic (non-identical) twins. This suggests that there is a strong genetic factor in the emergence of autism rather than environmental factors taking precedence. To summarise, it is likely that autism is inherited genetically rather than being something triggered by variable in the external environment.
What are the heritability rates for autism?
To consider the likelihood of autism being inherited, I considered another twin study by Tick et al (2016). This study found extremely high heritability, with their estimates being 64%-91%. Supporting this is Sandin et al (2017) which found a heritability rate of 84%. To consider this is simple terms, it is extremely likely for autistic parents to have autistic children. In fact, most of the children birthed by Autistic parents will themselves be Autistic.
How many Autistic people are there in the UK?
I recently wrote an article that cited studies finding that there were over 450,000 diagnosed Autistic people in the UK. This research went on to estimate that there could be as many as 1.197 million undiagnosed Autistic people in the UK. Taking both of those figures into account, we can infer that there are around 1.5 million Autistic people living in the UK, both diagnosed and undiagnosed. There is limited data around how many Autistic people are having children, but the existence of charities such as Autistic Parents UK implies that this is a significant aspect of Autistic experience. In the absence of better data, I will assume that Autistic people are having children at roughly the same rate as non-Autistic people.
What is the average number of children per family in the UK?
This website suggests that on average there are 1.74 children per family, with the Office for National Statistics finding that 42% of families have one or more dependent children, equating to some 8.2 million families. Suggesting that in the UK there are around 14.268 million children in the UK. With the ONS finding that there are 19.4 million families in the UK, and knowing that the statistics here only look at dependent children, the 1.74 figure can be inferred to be relatively accurate.
Concluding thoughts
Autism is increasing because Autistic people are reproducing. Even if only half of 1.5 million(ish) Autistic people in the UK had children, on average that would produce almost another 1.3 million Autistic people if the heritability rates are accurate. I believe that the way towards tackling the “epidemic” argument and removing stigma from Autistic lives is to do robust research into Autistic families. We are not a disease or an epidemic, we are humans. Like any other human, many of us will go on to have families of varying sizes. Given this, we can not be surprised that the number of Autistic people is increasing. It’s time the world caught up with us and supported us, rather than empower the people who seek to eradicate us.
Since this campaign to change the way that CAMHS (Child and Adolescent Mental Health Services) treats Autistic children and young people started, I have been blown away by the bravery and commitment to making a difference I have seen. Hundreds of thousands of you have come forward with your own stories, laying bare that which makes you vulnerable. I feel as though we are drawing a line in the sand; this year of 2023 is the year where we no longer accept statutory services threatening the wellbeing and lives of our Autistic children and young people. In line with this, an Autistic parent has very courageously come forward to tell me their story of CAMHS failing their child. Please note that the quotes have been anonymised in order to protect the identity of the family.
Autistic young people need services like CAMHS
I have written extensively about the relationship between being Autistic and having mental health concerns. Much like all of these stories of CAMHS, it starts with a young person in crisis.
“My daughter had a major depressive episode for approximately 2 years when she was 14/15, we now know this was autistic burnout.
Young person’s parent
Autistic burnout and mental health are intrinsically linked. If you have read the writing on this website around atypical burnout, you will have some idea of the diverse ways in which burnout can impact us and our behaviour. Despite this, Autistic burnout is still to enter into mainstream knowledge within services that work around mental health. This despite the growing body of research on the topic such as Raymaker et al (2020).
Accident and Emergency departments are ill-equipped to cope with mental health and neurodivergence
“Everytime she wanted to take her own life we were referred to A&E where we would go and then wait up to 48 hours for someone from the CAMHS team to come and assess.
This happened several times. I myself was coming out of an autistic burnout and was in no fit state to fight and battle, i knew nothing about being autistic at the time.”
Young person’s parent
One of the big issues with referring an Autistic young person to a hospital is the communication and empathy divide. Most will have heard of this as “the double empathy problem”, but healthcare in particular offers additional barriers, creating what Shaw et al (2023) refer to as “the triple empathy problem”. This represents the fact that not only is there an issue with Autistic to non-Autistic communication and empathy, but also medical professional to non-medical professional communication and empathy.
To consider it another way, hospitals should not be assumed to be the right environment for an Autistic young person who is experiencing suicidality. CAMHS and other mental health services use this as a stop gap, usually before gatekeeping the young person out of services.
Autistic young people often end up in psychiatric inpatient units
Unsurprisingly, the fallout of CAMHS failing to appropriately support Autistic young people is that a great number of them will end up being sectioned and detained under the Mental Health Act. Detention of Autistic people has been a point of contention between Autistic people and the government; this contention has been further amplified by the recent ditching of reforms to the Mental Health Act.
“It was decided the best place for my daughter was an adolescent hospital in Cranbrook, Kent
I thought she would be there for a couple of weeks but she got a lot worse, self harmed, escaped which got her sectioned and was there in total for 6 months.”
Young person’s parent
Unfortunately, it is not unusual for voluntary admissions to turn into involuntary detention. I would also note as an Autistic person who has been an inpatient that wards often have a supply of contraband as well as being incredibly triggering environments. Self-harm and escape attempts can become a self-fulfilling prophecy. I personally was threatened with the police if I attempted to leave. Much of this would be unnecessary if CAMHS treated Autistic people equitably.
CAMHS and crisis teams
Anyone who has had a mental health crisis and attempted to access support will probably be familiar with crisis teams. In England they are often called Crisis Resolution Home Treatment Teams (CRHTT). They again stand as a barrier between the young person and long-term support from CAMHS. I am aware of many people who have been discharged from the care of CRHTT’s to manage on their own.
“A crisis team visited for a week after to check we were okay. Sent for DBT [Dialectical Behaviour Therapy] therapy (didn’t work), and signed off with antidepressants.”
Young person’s parent
DBT much like CBT and other NHS therapies is only as useful as the therapist and the therapeutic relationship. CAMHS have neither the resources nor staff to give young people a choice of therapists, and as such, if you get a bad one, you’re stuck with them or labelled as “not engaging”. I would also note the generic addition of antidepressants. While they have their place, they are not a solution for Autistic burnout, and if CAMHS knew anything about Autistic experience, they wouldn’t use them as a go to treatment.
CAMHS and the invalidation of Autistic experience
If you’re undiagnosed at the time of accessing CAMHS, you will find that you are constantly invalidated. Everything is an illness, everything is part of your illness. They will convince you that your experience isn’t real. and that there is no better support out there.
“CAMHS involved lots of waiting, gaslighting, not believing, not listening, accusations of bad parenting. If they had listened my child wouldn’t have been admitted to a psychiatric unit. She would have been diagnosed as autistic.
All the wrong support was given.”
Young person’s parent
I would particularly note the mention of bad parenting here. Autistic and otherwise disabled parents are much more likely to fall victim to what Clements & Aiello (2021). This can go as far as accusations of fabricated or induced illness (FII). Parents are being used as the scapegoats for underresourced and incompetent services.
CAMHS wont help Autistic young people
“From a different perspective, if she was initially diagnosed as being autistic then she wouldn’t have received any support at all and turned away!”
Young person’s parent
If this campaign over the current CAMHS crisis has bought anything to light, it’s the fact that hundreds of thousands of Autistic young people are being turned away from support for no other reason than their neurodivergence. If CAMHS are not equipped to support them, it is time they became equipped. Refusal to support marginalised groups is complicity in their oppression and deaths. Our children deserve so much better.
What can you do to support the CAMHS crisis campaign?
Here you will find a collection of information about supporting your Autistic loved ones and the barriers that you may face as a parent, child, or adult. Below are a growing collection of articles and resources. More will be added to this over time. For information on some of the basic knowledge around neurodiversity, try…
Within the Autistic community, much of the basic theory that exists within neurodiversity studies is taken for granted. For newcomers, it can feel very overwhelming to understand as this body of ideas has been growing for decades. This page aims to take some of the core ideas and explain them to newcomers. What is neurodiversity?…
I was informally diagnosed with C-PTSD in 2017, aged 41, then formally diagnosed aged 46. I self-identified then was professionally diagnosed Autistic aged 42. I self-identified ADHD aged 44 and diagnosed aged 47.
But, how old do you think I was when I truly believed that I finally understood my own mind?
I was 31, and off sick from work with depression, working my way through this self-help book: Adult Children of Alcoholics, by Janet Geringer Woititz Ed.D, and making notes in a notebook (I still have this, it is full of signs of autism).
‘This book has all the answers’, I thought at the time. ‘I now realise it is my dad’s fault that I am like this’, I thought, oblivious to the fact that my brother was not the only one in the family struggling to cope with Autism and ADHD, and oblivious to the impact of my dad’s undiagnosed neurodivergence and his circumstances in his formative years. This was only one piece of the puzzle.
So sure was I, aged 31, that my recurring depression was ultimately my dad’s fault, I even asked him to pay for my psychotherapy. Yes, my beloved dad, who had been sober for 20 years then, but still described himself as a recovering alcoholic (and still does now). His reply was something like, ‘it is not that simple, we all have our baggage’.
My late diagnoses of Autism, C-PTSD and (in two weeks) ADHD have led me to completely rethink, to accept how what I know and understand is only the tip of the iceberg, and to reject the moral model of addiction.
Let’s not just de-stigmatise neurodevelopmental differences and mental health conditions, but also addiction, which is a human reaction to circumstances, NOT a moral failing! Addiction does not make us inherently bad people.
And one book cannot hold all the answers. Self-awareness is a journey, not a destination, and we each carry baggage.
When living life as an AuDHD (Autistic and ADHD) person, we often find ourselves falling prey to the propaganda of Western society’s neoliberalism. The enforced belief that one should be self-reliant and contribute to the capitalist machine is one that leads to the victimisation of most, if not all, of us. It’s easy to get caught in tackling the surface level ableism. However, we must dig deeper and fight the roots of our oppression in order to begin building a society we can thrive in.
The politicised existence of AuDHD people
When considering the nature of being AuDHD and/or otherwise neurodivergent, it is necessary to consider that we are not allowed to simply exist. As a marginalised community, most every aspect of our lives is a political matter.
Government welfare schemes decide if you can afford to feed yourself and your family, government health departments decide if you should have equal access to lifesaving treatments, and if so, how much you should pay. If you break the law, the government dictates your experience of the criminal justice system. If you are terminally ill, the government dictates the decisions you can make around the end of your life. When you are AuDHD, much of your autonomy in life is shaped by government legislation.
The weaponisation of our politicised existence
While your life is being dictated by those with no experience of it, we have the proverbial carrot dangled in front of us. Assimilate and be free. To some this might seem like an attractive option. If we were to just give in, less of our life would be dictated. Again, this is a mistruth.
The politics of the pathology paradigm are built upon neuronormativity. That unattainable summit of neurotypical performance that those in power ask us to achieve. Through the political control and oppression of neurodivergent embodiment, we are given the choice to deny ourselves; live inauthentically and be provided for, or be true to ourselves and relinquish our agency over our own lives.
To be neurodivergent in Western society is to accept that you are an afterthought, an anomaly to be corrected. As much as we threaten the status quo, the status quo threatens us. Thus, the spectre of legislative intrusion into our lives becomes a weapon to force us into the neurotypical box.
The paradoxical nature of being AuDHD
Politicised attitudes towards autism and ADHD are paradoxical in nature. The Autistic person should be less rigid and structured, while the ADHD person should stick to a routine. The Autistic person should socialise more naturally while the ADHD person should talk less.
No matter the contradictions we live with as AuDHD people, one thing is clear. Society wants us to silence our neurodivergence. To speak neurodivergently, be it with mouth or body, spoken or written, no matter the medium, society wishes for our silence.
Liberating AuDHD embodiment
One could be forgiven for thinking that to liberate AuDHD and neurodivergent people requires the removal of ableism from government. It’s more complex than that. Neurodivergent people are victims of complex systems of bigotry. Rarely are we only impacted by ableism. We face racism, homophobia and transphobia, ableism, sanism. This is not an exhaustive list.
To liberate AuDHD’ers living in a society built on colonialism and white supremacy, we must form new foundations to our society. We must build a place where all are accepted, rather than the privileged few in our culture whose existence is not seen as a disorder. We must embrace those seen as a pathology of humanity and empower each other to make something better than what we have currently.
It is not a disorder to be human. The world deserves better than that which the privileged few offer us.
I have been writing about CAMHS and their failing of Autistic children and young people. The stories I have been hearing are deeply upsetting, and a scathing indictment of a service that does not seem to care that Autistic children are losing their wellbeing and lives for the sake of protecting resources. Despite years of evidence and calls for CAMHS to improve their service, they have failed to do so. Recently I decided to ask Autistic people on the X app what their experiences had been. Here is what they said.
Refusing to see Autistic children
Camhs decided my daughter should be sent home from A&E, so she ran off.They discharged her in her absence. My husband eventually caught up with her and pulled her off a railway bridge. Police assisted. A&E refused the police to bring her in as camhs had discharged her.
This tweet stood out to me because CAMHS frequently use the tagline of “does not meet threshold” to refuse access to their service. The threshold, it seems, is multiple suicide attempts or serious risk to others. This crisis-driven intervention model is costing Autistic children their lives, and those lives are on the hands of CAMHS services that have failed to support them. The story in this tweet does not stop there.
Camhs told us we had to keep her safe. Made us sign a form to say we would, despite saying we were struggling with sensible measures already in place. Refused to support us further. Refused to alter their approach to help child engage and instead told us they couldn’t force her.
CAMHS are regularly taking this approach to Autistic children and young people, and it is time that this was changed. Parents and carers should not be expected to do the job that CAMHS refuse to do.
The CAMHS to prison pipeline
Newham CAMHS was awful. They refused to assess my son. Parent blamed and pushed the problem on us. As a consequence he was removed from mainstream school. Now in the prison system with confirmed diagnosis of ASD, ADHD and ODD. They let us down as family massively.
Lane et al (2021) discusses how over half of young people referred to Forensic CAMHS (the criminal justice branch of CAMHS) were first referred to general CAMHS. Over 70% of those under Forensic CAMHS presented with complex needs that often included Autism and/or ADHD. This highlights to me the significant risk of young people finding their way into the criminal justice system, especially when they do not receive appropriate support. This parent highlights the institutionalised parent carer blame that was inflicted upon them, a story that I hear all too often. CAMHS need to stop blaming parents for the failings of a system that is broken by design.
Crisis-driven intervention model
CAMHS rejected my GP's urgent referrals for my traumatised children. Subsequent urgent GP referrals received a response 9 months later.
Crisis-driven intervention has been a problematic model within UK mental health services for a long time. In my opinion, it is the result of chronic underfunding by our government choking services of their resources. The approach that is taken, as a result, is to only handle the most pressing cases. The problem is that when left without support, many, if not most, will come to crisis at some point. Crisis-driven interventions models do nothing but put lives at risk. This apprach by CAMHS is further evidenced by the following tweet.
Worked in SEN, phoned up CAMHS so many times. Usually they ignored us. Even with police and social involvement. Was told outright "we can't take them on unless they've attempted suicide TWICE, just thinking about it isn't enough" Gave them an earful
Leaving Autistic young people until they have attempted suicide is tantamount to playing Russian roulette with children’s lives. This is systemic negligence.
Camhs are absolutely awful in NHS highlands- my son needed help after trying to kill himself, urgently referred by GP and camhs refused to see him and said the school needs to sort it out!!!! My son was 12, now 13 .
CAMHS needs to be fundamentally restructured if it is not able to support suicidal children.
CAMHS don’t deal with Autistic children
Got told they dont deal with Autistic children CAHMS so you just get sent a check list of what you can do instead or parenting courses 😂🙏
— /🏆Arsenal 🏆ADHD 🏆John Gooner👊 (@AutisticsGooner) October 23, 2023
Again, we see parents being made to do the job’s that professionals are supposed to be doing. The fact that CAMHS refuse to see Autistic young people and children is exactly why we are campaigning in the first place. There are no suitable alternatives, and it is active discrimination against Autistic people.
Email a short 2 minute video to david@dghneurodivergentconsultancy.co.uk about your experiences of CAMHS failing Autistic children and young people. We will be using them to make a YouTube film.
Over the years, I have spoken about my experience of psychosis and autism from the perspective of its uniqueness. However, over the last few years, I have come to accept that I am also ADHD, and I feel that addressing the particular intersections at play for AuDHD people experiencing psychosis is something that needs to be done. So, what is different for me as an an AuDHD person with a diagnosis of schizophrenia?
How does my schizophrenia present?
One of the features usually seen in Schizophrenic people is flat affect or lack of emotional response. For me, though, this does not happen. Part of the reason I went 14 years without a schizophrenia diagnosis is because I present as excitable and impulsive. I say absurd things, and quite well embody the description of a “mad scientist” trope.
Despite experiencing typical traits such as paranoid delusions, voice hearing, visual hallucinations, and periods of catatonia, I don’t experience many of what would be called the “negative symptoms”.
My speech is rarely disorganised unless I am deep into psychosis, I can communicate rationally, and even when I am terrified, lonely, and hopeless, I come across as exuberant and in need of constant stimulation. I also demonstrate a lot of insight into my diagnosis because as an AuDHD person, I have spent a long time learning about it in intricate detail.
The insight problem
One of the problems that psychiatrists have had with recognising my psychosis is the aforementioned insight I have. This can be understood as having an awareness that what you are experiencing isn’t real. For me, it was a complicated affair.
I knew a lot about psychotic conditions. I knew diagnostic criteria and contemporary research. I absorbed knowledge from therapists. I knew logically that I met the criteria for a schizophrenia spectrum diagnosis. Despite this, I still didn’t believe I was ill (more on that in a moment). This meant that psychiatrists were faced by a patient who seemed to simultaneously have and not have, insight.
Am I mentally ill?
This is perhaps one of my most controversial opinions, even amongst people who know me well. I do not view myself as having a mental illness, but I do agree that I am Schizophrenic. Much in the same way one can know they are Autistic or ADHD without viewing either of them as illness.
I believe that my schizophrenia is a form of acquired neurodivergence precipitated by a life of traumatic experiences. While I do not believe I am ill, I do take medication. I view this medication in the same way that one might view ADHD meds. They are a tool that makes life more manageable.
How common is schizophrenia in neurodivergent spaces? (Further reading)
Jutla et al (2021) mention that studies have indicated a prevalence of 12% in Autistic populations, with schizophrenia spectrum conditions being three to six times more likely amongst Autistic people.
Gerhand & Saville (2021) found schizophrenia and ADHD co-occurrence rates of up to 38.75%, vastly outpacing the general population.
For more information on my experiences and these intersections, read these articles
Being an Autistic teenager is hard. My life was no exception to this rule. After years of trauma and loss, I was at breaking point. Then, one day, my mother came to hurry me up with getting ready for school. What she found was not the resilient and hardworking son she was always so proud of. No, what she found was the husk of her child. Unable to speak or do anything but rock back and forth while sobbing. This is a story about CAMHS.
I was 15 years old, and for the next three months, I would barely be able to leave the house. Let alone attend school.
It transpired that the person who would be the most helpful was a paediatric doctor. I wasn’t seeing him for my mental health. I was seeing him for bowel and stomach related issues. He became deeply concerned with my suicidal ideation and stress levels, and wrote to both my school and my GP to insist I have a referral to Child and Adolescent Mental Health Services (CAMHS) made.
The truth is that at 15 years old, I didn’t see any point to my life. It felt as though suffering were all I was destined for, and I would be better off leaving this world, taking with me the burdensome weight of my pain. I waited only a few weeks for an appointment to be made with a CAMHS psychiatrist.
I have always communicated best through written word and art. So, naturally, I took with me to the appointment writing and drawings that contained some of the darkest machinations of my suffering. If there was a chance for help, I wanted them to see how deep my pain ran. I wanted them to know the truth so they could best support me.
The psychiatrist was not interested. She did not want to see me writing or drawing. She didn’t care for the vulnerability I was laying before her in order to communicate my needs. I felt invalidated and small. Powerless. In her words, I was euthymic (meaning of good mood) and a school refused. She acknowledged that I was depressed but made it clear that if I did not want to take medication, I would be discharged.
The appointment lasted five minutes. I was discharged and labelled a school refused. My mother would go on to be threatened with legal action and fines. I went on to become a young adult, heavily addicted to drugs and alcohol, Schizophrenic, and deeply suicidal. I would not have my formal identification of autism until 6 months after I got sober.
CAMHS showed me then, even in 2005, that they didn’t care about children like me. At the time I thought I was just unlucky, but my time in the Autistic community has show me I am one of tens of thousands of Autistic children who have been failed by this service at some of the most crucial times in our lives.
That is why I am part of the ongoing campaign to hold CAMHS to account. Lives have been lost, and I am lucky mine wasn’t one of them. How can we make a better future for our children when services like CAMHS allow them to grow into adults for whom suffering is an everyday part of their lives?
I will not allow this to continue, and neither should you. We owe this to our children, and all children yet to come.
Child and Adolescent Mental Health Services (CAMHS) in the UK exist to help children and young people who are experiencing mental health problems. Despite this, Autistic children and young people are finding that such services either refuse or fail to deliver meaningful intervention, even when they are in the depths of mental health crisis. One of the ways that they do this is through positioning their parents and carers as being at fault for the young person’s mental health problem.
What is institutional parent/carer blame and why is it relevant to Autistic people and their families?
“Disabled children and their families are one of the most severely disadvantaged groups in the UK. They are ‘significantly more likely to live under conditions that have been shown to impede development, educational attainment and adjustment to and increase the risk of poor health, additional impairment and social exclusion’.
Institutionalised Parent/Carer Blame is the practice by societies institutions of taking an adversarial approach to supporting children and young people. In the context of social care, this often looks like issuing safeguarding proceedings when a needs assessment is required. Autistic and disabled families run foul of this far too often (as mentioned in the quoted report). Sadly, CAMHS also engage in this kind of practice.
What is the most common form of parent blame in CAMHS?
The National Institute for Health and Care Excellence (NICE) recommend parenting courses as “evidence-based interventions”. In particular, these courses are often aimed at parents of Autistic children. Unfortunately, not only are these courses often unhelpful, they position parents who are likely to be disabled themselves as the root of their child’s struggle. Failure to engage with the tools of this parent/carer blame can lead to social care involvement and safeguarding reports. It is the weaponisation of the system and defensive practice.
It is failing Autistic children.
Why do CAMHS engage in institutionalised parent/carer blame?
In my opinion, a significant factor in the practice of parent/carer blame is the need to gatekeep resources, coupled with a failure to understand Autistic children and their families within their unique context. In social care, this can be seen by the absence of clear guidance on how to approach disabled children and their families in the Working Together Document (2018). This sets the stage for countless inappropriate safeguarding referrals and systemic hostility.
Not only are CAMHS (self-professed) to not have the skills or knowledge to work with Autistic people, they are losing important resources year on year.
“…government statistics show a 25% increase in the number of young people with a mental health need – from 61,830 in 2019 to 77,390 last year.”
Despite the post-COVID increase in mental health problems amongst young people, funding and resources for CAMHS have not changed in a positive way. This has led to a shortage of skilled staff and a culture of defensive practice. Autistic young people, like many disabled people, are treated as an acceptable loss.
What is the result of parent/carer blame for Autistic families?
“…one in five GPs (18%) knows of a patient who has tried to, or taken, their own life after being refused care – often on the justification that their condition was not ‘severe’ enough.”
Not only are Autistic young people losing their lives due to CAMHS failures, there is an ever present risk of family breakdown. Families who can not get the correct support risk harm to the entire family unit, not just the Autistic young person in crisis. The victims of CAMHS failures are a far wider group. We hurt when our loved ones hurt. Yet, CAMHS are still willing to contribute to the criminalisation of parents whose only crime was to ask for help.
When we think about autism in the Autistic community, an infinite number of moving points coalesce to create countless individuals with a shared experience. One might argue that to be Autistic is to meet a certain set of limited criteria, but many of us understand that autism is more than a simple diagnosis. You can then understand our frustration with how our existence is framed in the media. From news outlets to Hollywood movies, our lives are interpreted in less than favourable terms time and time again.
Understanding the Autistic performance
Titchkovsky (2007) discusses disability as something we do. In this context, we not only are disabled; we do disability. Being Autistic can be viewed in much the same way. We do autism, we perform autistically. In my book A Treatise on Chaos I explore the Self as a moving a fluid entity. To belong to the Autistic community is to embody the Self in an Autistic way.
This means that to perform an Autistic embodiment, we are not constrained by another’s idea of what being Autistic is. We define autism as much as autism defines us. There is no wrong or right way to be Autistic.
How does the media undermine the Autistic performance?
“They finally knew what was wrong with their shy, diffident son who would one day shoot and kill 20 children and six adults…”
The above quote is from a Washington Post article linking autism to mass murder. I wish I could say such stories are rare, but sadly the media is full of them. It seems that every time a mass atrocity is committed, there is a rush to pin the blame on neurodevelopmental differences or mental health issues.
This sensationalist and reductive approach to Autistic people strips us of our humanity. It not only others us, it creates a level of fear and stigma surrounding our existence. Media reporting like this makes us a potential threat to be contained by society rather than free agents with the potential to contribute to our world.
Why does the media portray Autistic people in this way?
The world fears inhuman acts. When atrocities happen, it is easy to look for a way to distance ourselves from them. One need never fear becoming a monster if what we see as monstrous is fundamentally different to us. Historically, autism has been a diagnosis for the improper human; thus, if Autistic people are the ones committing monstrous acts, then the every day person can rest in the knowledge that they will never become one.
There is more to it, though. Autistic, as an identifier, has gone through a sort of pejoration as our community fights for equitable rights. As we become more vocal, those with privilege slowly guide the consensus on the meaning of autism to become less human, less than human, inhuman. If we can be made into monsters, it is less likely that our rights will become undeniable.
How do Autistic people take back the meaning of autism?
Autistic people must seek to subvert pejorative ideas by demonstrating their undeniably human lives. We must work to restructure the foundations of our society so that the every day Autistic person can be openly Autistic in defiance of dehumanisation of our existence. We must show those fluid and moving parts of ourselves in a way that annunciates our inability to be contained by stigma and hatred.
More than anything, we must perform our Autistic performance in such a way that we reverse the pejoration of our identity.
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