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How the uncertainty in CAMHS processes harms Autistic children and families

Autistic people are somewhat renowned for struggling with sudden change and uncertainty. While not necessarily universal, it is prevalent enough to be a talking point in many Autistic spaces. This raises issues when we consider services like CAMHS (Child and Adolescent Mental Health Services) in the UK. Like many NHS services, procedures and staff are subject to change and high turnover of staff, meaning that you can never quite be sure of what is being done.

High staff turnover in CAMHS is damaging Autistic children

During the 2021-22 period, 17,000 (12%) members of staff left their role within NHS mental health services (House of Commons report, 2023). This represents a large portion of staff that may have been involved with or critical to the care of Autistic young people.

“The PAC [Parliamentary Advisory Comittee] calls on the NHS to address the fact that staff increases are being outpaced by the rise in demand for services. The NHS mental health workforce increased by 22% overall between 2016-17 and 2021-22, while referrals to these services increased by 44% over the same period.

House of Commons report, 2023

With demand rising, Autistic people potentially represent a huge portion of that 44% increase. According to the Mental Health Foundation website, 70% of Autistic people have a mental health concern. Despite this, a separate report for the PAC found that just 1 in 10 CAMHS patients are Autistic. I infer from this that high staff turnover makes CAMHS inaccessible due to the uncertainty of seeing the same member of staff, or services even having the staff to meet the demand from the Autistic community.

CAMHS can’t upskill for Autistic clients while dealing with staff shortages

The same report that showed high staff turnover also suggests that staff shortages are preventing services from “improving and expanding”. This is true. Staff recruitment and retention costs money. According to NHS England (July 2022), a huge number of new staff were recruited, amounting to an extra 40% of the workforce. Recruitment like that costs millions, with millions more poured into basic training. You then need to spend more money to keep the workplace hospitable enough to retain that staff.

It is clear from the aforementioned turnover rate that staff retention is failing. However, the millions being poured into replacing those lost staff members is money that vould go into meaningful changes to how services support Autistic young people. Tanya Adkin and I have written previously about how CAMHS failures can be life threatening for Autistic young people. It is clear that part of making a CAMHS that is safe for young people is making a CAMHS that is able to retain staff.

How does CAMHS create uncertainty for Autistic young people and their families?

With ever changing staff and heavier focus on recruitment and retention than on upskilling, there are some significant issues. The primary issue is one of gatekeeping; rather than make a CAMHS that can successfully support Autistic children, they gatekeep and obstruct them from their services.

Another factor to consider is that those few Autistic young people who do make it through the door, are faced by constant staffing changes. Differences in Autistic processing of change mean that sudden changes to staff could be deeply distressing (Ausome Training, 2022).

Staffing changes also present a third issue. Support provided by CAMHS and other mental health services is often at the discretion of individual professional opinions. If one member of staff promises something, and then is replaced by someone who disagrees, this might pull the proverbial rug from beneath that child and their family.

How does this harm Autistic children and their families?

Not only is the uncertainty harmful for the child or young person; a dysregulated child can lead to dysregulation in the whole family unit. When our children suffer, we suffer. No one wants to watch their child struggle with suicidal thoughts or meltdowns, which can be particularly more problematic as a young people grow older. There is the potential for both emotional and physical harm for the Auristic young person and members of their family. The Autistic community fights for acceptance, and as part of that, we have to fight for services that don’t fracture and injure our families.

In the fight for Autistic liberation, there is no fight so important as the fight for our wellbeing. While our children and young people suffer their way into adulthood (if they make it that far), there is no liberation for Autistic people. We must also see to it that the wellbeing of Autistic families is not the cannon fodder for services with misguided priorities.

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Understanding Autistic people’s relationship with drug use

In the early days of my advocacy my entire focus was on the relationship between being Autistic and experiencing addiction. This was particularly relevant to my life as a person who was early into recovery from drug and alcohol addiction. As my advocacy grew, it became clear to me that two things were needed: 1) there needed to be more research into this topic. 2) addiction was not a standalone issue in the lives of Autistic people, and is intimately connected to the way that society treats us. In this article, I hope to reflect on the current knowledge around autism and substance use.

Important terminology for considering addiction among Autistic people

Social Capital-

This can be seen as the networks of people in a person’s life. Family, friendships, and professionals all connect together to create the social capital that an Autistic person has access to.


Not all substance use is addiction. Self-medication is any use of drugs or alcohol (when not prescribed by a healthcare professional) to combat difficult aspects of one’s physical or mental health.


I conceptualise addiction as the habitual and compulsive use of a substance despite serious negative impacts in one or more domains of a person’s life.

Understanding the prevalence of substance use in Autistic populations

There is growing evidence that substance use and addiction is a significant issue within our contemporary understanding of Autistic experience. I have previously written about my own experiences of addiction, but over time I have been privvy to conversations about just how prevalent and diverse these experiences are in our community.

Autistic people often use drugs and alcohol to self-medicate. Weir et al (2021) found that Autistic people were more likely to report using recreational drugs to self-medicate their mental health. This resonates deeply with me as my own drug and alcohol use coincided with the emergence of my schizophrenia at the age of 18. Arnevik & Helverschou (2016) and Ressel et al (2020) demonstrated prevalence ranging from 1.3% to 36% among those already diagnosed Autistic with the former also demonstrating that 2% of those diagnosed with a substance use disorder (SUD) were also Autistic. Comparatively, the World Health Organisation states that Autistic people make up 1% of the global population.

From this research we can draw two conclusions. Up to a third of Autistic people have reported issues with substance use significant enough to be recognised by academic literature, while Autistic people in general are twice as likely to be found among those with an SUD diagnosis as they are in the general population. I believe this demonstrates the point I have made repeatedly; this is a significant issue for Autistic people.

Why are Autistic people using drugs and alcohol?

Livingstone (2021) notes that a significant factor in substance use among Autistic people is the camouflaging of Autistic traits. This is poignant to myself; drug use allowed me to exchange my Autistic identity, one that was not well accepted, for one of a drug user. One might ask why being a drug user is better accepted than being Autistic. I would highlight that drug use gave me a shared interest with my peers that was not considered abnormal to discuss with them. By leaning into our interest in drug use, I was able to infodump without boring them.

Livingstone (2021) goes on to further discuss compensation and self-medication and it’s links to decreased wellbeing. While we may compensate for our struggles with drug use, it is ultimately correlated with an increased level of struggle. Again this links to my own experiences wherein self-medication ultimately led to a worsening of my mental health requiring further substance use to cope. It impacted upon all domains of my life and caused long lasting damage to my physical health.

Haasbroek & Morojele (2022) takes this further by commenting on the numerous variables involved in substance use behaviours of Autistic people. They comment on how despite the historical assumption that autism is a protective fact in substance use, it appears that in fact it is correlated with an increased likelihood of substance use. I find this interesting as I have met many professionals who have told me that Autistic people “don’t use drugs”, an exceptionally fallacious statement in it’s on right.

How does further neurodivergence impact drug-use?

Huang et al (2021) highlights findings that “behavioural comorbidities”, with ADHD and OCD getting a specific mention, actually correlate with an increased risk of drug and alcohol use. When a person is AuDHD or has co-occurring mental health issues (such as OCD) it stands to reason that they will self-medicate in the absence of meaningful support, an issue that is particularly topical given the current issues with services like CAMHS in the UK. Lai et al (2019) indicates that co-occurring mental health issues are rife in Autistic populations, making the correlation with substance use even more significant for professionals supporting Autistic people.

Further thoughts on the intersection between autism and substance use

With Autistic people representing such a large portion of substance users, one might wonder why addiction treatment services still do not screen for common neurodivergence upon initiation of treatment. There are numerous moving parts to the success of those in treatment, in particular, the social capital of a person. Ressel at al (2020) notes reduced social capital among Autistic people. This in my mind is reflective of the social isolation that we see within our community, and highlight the importance of community-connectedness in online spaces.

If we consider reduced social capital to be a contributor to minority stress, we can then further extrapolate from Botha (2020) that the Autistic community and it’s various spaces may be the protective factor in substance use that could save lives. Services should not only screen for autism, but also signpost individuals to Autistic-led spaces.

While services themselves need to have a serious think about the literal accessibility of said services, more attention needs to be paid to the positive input of the Autistic community into the recovery of Autistic people struggling with addiction and other substance use related issues. This community saved my life, and I am certain it could save many more. Social capital is available to us, we just need to know where to find it.

CAMHS Crisis: An Autistic parent speaks out

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

Text reads "CAMHS should not be turning away Autistic children"

“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.

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Supporting your Autistic loved one

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…

Neurodiversity: The Basics

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 asked Autistic people about their experience of CAMHS: Here’s what they said

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

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 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

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

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.

Leaving Autistic young people until they have attempted suicide is tantamount to playing Russian roulette with children’s lives. This is systemic negligence.

CAMHS needs to be fundamentally restructured if it is not able to support suicidal children.

CAMHS don’t deal with Autistic children

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.

How can you support the CAMHS crisis campaign?

CAMHS Crisis Campaign
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Call to action
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A story of being Autistic and getting referred to CAMHS

This article is a guest post written by Asher Jenner

Some of the content of this article may be triggering

I was a happy child until the age of 5 when I went to mainstream school. On the first day of school, I began self-harming and by the end of that week I attempted to use a ligature to strangle myself.

I knew I was different to all the other children in school who could simply obey the school rules, be quiet, sit still, concentrate on work, not shout out answers to questions and enjoy team sports and games and playtimes. I really struggled at school to do all these things, but I was very bright and wanted to learn.

When I left school each day, I immediately went into Autistic meltdown due to my masking all day and the way the staff and pupils treated me. I was verbally aggressive and threw large items such as an armchair and a large TV. I kicked and punched anything near to me. I was majorly distressed.

My parents asked 3 times for school to refer me to CAMHS for an assessment for Autism so
that they would get the right support for me at school and so they could help me properly at home. School refused to refer twice but referred the 3rd time. Someone from CAMHS came into school and observed me in 1 lesson for an hour when I was heavily masking. They asked mum and dad to fill in a questionnaire which was assessing for ADHD, when they had asked for an Autism assessment! Aged 6 CAMHS told me I had no condition at all but that I was willfully naughty and attention seeking. They told my parents that their parenting was at
fault and sent them on a standard parenting course. The person running the course agreed
after 2 sessions that the course was not suitable and was a waste of time.

My behaviour at home and school became more and more distressed. I had no friends at
school, and I had major Autistic meltdowns at school and at home. The self-harm attempts
to kill myself and the feelings of major distress just grew massively. School refused to refer me back to CAMHS and so aged 7 my parents got a private Autism diagnosis. The report from the diagnosis said I required urgent assistance from CAMHS due to my poor mental health at a tier 4 level. CAMHS refused to even see me.

Subsequently, my parents got a private PDA diagnosis, but CAMHS insisted that PDA did not exist and that I had Asperger’s. They told me it was a gift, and I should be happy to have Asperger’s. They showed no understanding whatsoever of the difficulties faced by Autistic or PDA youngsters, and they were the very organisation we trusted to understand Autism and PDA and to give appropriate support for that and mental health issues associated with it.

My mental health declined consistently from this age to the age of 15, when I was taken into an inpatient eating disorder unit as my life was in danger.

I was referred to CAMHS on many occasions during this period, such as when I was excluded from school, as I was classed as a danger to myself and others. They saw me a couple of times and offered basic breathing techniques and nothing more and discharged me! They finally agreed to give me Melatonin so that I could sleep, but they offered no support for my OCD and germ anxieties which had begun due to my severe anxiety levels.

They were asked on many occasions to give support for this as it was starting to really take over my life, but they refused. They refused for many years to give me any anxiety medication or therapeutic support, and their attitude towards PDA altered from it doesn’t exist, to it may be a thing but as it isn’t diagnosed here, we are not trained in it, and we will not be trained in it and so we cannot help you. Please be aware that we have many friends in the PDA society who are official trainers for the PDAs society.

We offered on many occasions to give
free training in PDA to CAMHS, but they refused to accept the training. On each occasion they stated that CAMHS were poorly funded and only had enough funding for 6-week standard therapies. They had no funding for neurodivergent services or alterations or extensions to their therapies. When my parents asked how we could get access to correct services or funding for me, CAMHS always replied there is none!

Emergency CAMHS were called on several occasions where I was extremely distressed, and it was nighttime. They refused to come out to me as they read my notes and said we don’t have training in PDA, and we have no drugs and no therapy to offer you. We come in a large team of people, and we know this would increase your anxiety, so we won’t come because we know it would make things worse! They said they would get core CAMHS to call us and give proper support the following day. They stated it was core CAMHS job to support people like me. Core CAMHS NEVER contacted us after any of our emergency CAMHS calls.

My germ anxiety reached the point where I would not leave my bedroom other than for
medical appointments. CAMHS offered immersion therapy in a 6-week standard course, and we took asked them to alter the therapy to be appropriate for PDA and Autism and advised them that it would take much longer than 6 weeks, but they refused and said it’s all we offer, take it or leave it. As the PDA society and the NAS had both advised that it would cause further harm and distress to have this therapy as it wasn’t in any way suitable for PDA, my daughter declined the treatment and again asked in writing for something suitable for her which would meet her needs. We received no reply.

My mum literally begged CAMHS for some help for me because my germ anxieties were so bad. They came round to the house and said they could not help at all but said I should go voluntarily into an inpatient unit for yet more standard treatment! I was traumatised by this and both myself and my parents knew it was totally unsuitable for me. We all told CAMHS this, but they just ignored us. I was left at home with no support for my mental health which worsened again to a point where I developed an eating disorder.

CAMHS only offered standard Maudsley method eating disorder support, which is a series of demands and is therefore totally inappropriate for a person with PDA (Pathological Demand Avoidance.) Again, we got advice from the PDA society and the NAS who both said do not accept this as it will worsen the mental state of your child. CAMHS insisted that was all they could offer and left me to get worse and worse. When I got to the point of refusing to consume any calories, CAMHS forced me into hospital, which further traumatised me.

In hospital, emergency CAMHS came to visit and stated it was not a classic eating disorder, I should not be in hospital as it was causing me trauma to be there, that standard eating disorder Maudsley method treatments were not suitable for me and that core Camhs should treat me in the community. Core Camhs ignored this and carried on stating that I had to have standard Maudsley method treatment from their ED team. The ED team refused to alter any treatment as they had no training or understanding of PDA and did not know how to help me. So again, I was left to get worse and worse.

CETR meetings advised I could finally get a package of support for suitable treatment in the community and admitted that CAMHS had failed me due to lack of PDA understanding and sticking to the line of you must accept standard treatment. No suitable treatment in the community was found and I was in hospital for 2 months classed as life in danger.

During that period, CAMHS and NHS England were meant to be finding a suitable place in a
unit which could meet my needs. They failed to do this, and so threatened in writing to
remove me from my parents’ ‘harmful’ care, to section me under the mental health act and
to take to me to a standard unit of their choice for standard care. Camhs psychiatrists told my mum that she was harming me by stopping me from receiving this standard care and would not listen to her when she advised that I needed care which met my needs and took account of my PDA, and that standard care would worsen my mental state and I probably would not live through it. Mum had to get legal advice from a barrister to get CAMHS and NHS England to change their views or we would take them to a judicial review, and at that
point suddenly they found a suitable unit which could give me a holistic person-centered approach and could meet my needs!

I went into Ellern Mede specialist eating disorder services unit in Rotherham and left 14 months later a totally different person. The treatment was amazing because I was listened to and understood, my needs were met, I was treated with respect, I was treated for all my mental health issues, approaches and therapies were altered appropriately, I was involved fully in my care and treatment. In other words, all the things which CAMHS had refused me for 10 years even though both myself and my parents had been asking CAMHS for it for 10 years!

I was diagnosed with general anxiety disorder among many other things at the unit and given appropriate medication for this. CAMHS had always stated that my anxiety was part of my Autism and on that basis, they refused to give me any medication for it.

The report written at the unit by the psychiatrists and psychologists stated that I was severely traumatised, and that the trauma had led to mental health issues and an eating disorder. The main causes of the trauma were stated in writing as mainstream school and CAMHS. So, to be clear, it was stated that CAMHS were the cause of my mental health issues, my trauma, and my eating disorder.

Since leaving the inpatient unit, I have had a very different life. I have finally been able to go back to school, which I missed for many years due to my mental health issues. I am taking and passing my GCSEs with level 7s and 8s. I have auditioned and am taking part in the Centre for Advanced Training at the Northern School of Contemporary dance, and I hope to study there for a degree in dance and open a fully inclusive dance school. I also present and train in Autism, PDA, mental health issues and eating disorders as well as advocating for others like myself. I present and train and advocate because I know there are thousands of other neurodivergent youngsters like me who are being failed by CAMHS and it must stop! I suffered massively for years because of them, and I almost died.

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Asher’s Bio

Since leaving the inpatient unit I have been determined to spread awareness and understanding so that no one else suffers as I did.

I have presented and trained both face to face and online in PDA, Autism, mental health issues and eating disorders.

I have worked for the PDA society, the NAS, Autism Accreditation, NHS England, the PDA Space, and the PDA summit 2023, various Autism charities, parent carer forums and Sencos across many areas etc… I have done a podcast with Anna Kennedy OBE, and I have been involved in getting a book called the Autistic Teens Avoidant Eating Workbook by Dr Elizabeth Shea published. This is a self-help workbook for Autistic Teens with Arfid.

I have trained in PDA and eating disorders in combination in Ellern Mede inpatient units, and they have advised me that my training is helping them to recognise people who have PDA but may be undiagnosed, and to give them appropriate PDA friendly supports. My work has been sent all over the world at the request of individuals including parents and those with eating disorders and PDA as well as some professionals.

I am hoping to be involved in having input to the Oliver McGowan mandatory training for inpatient units, so that PDA will be added to the training. I have just recently become a trainer for the PDA society, and I hope to be able to reach more professionals, parents and other neurodivergent people to bring about understanding and support for people like myself.

I have received a Radio Humberside Making a Difference Highly commended award in 2022 and I have been nominated for an Anna Kennedy Autism Hero award this year 2023.

I have also been able to return to my school and my studies and I have passed 3 GCSEs with good grades. I have 2 more to finish this year. I am now dancing at the Northern School of Contemporary dance, and I hope to go on to do a degree in dance there.

My ultimate goals are to run my own fully inclusive dance school for all, and to carry on my advocacy work in some guise. I’m currently voluntarily presenting and training, but eventually my plan would be to earn a living from this as well as my dancing career.

How CAMHS put my life at risk and then discharged me

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.

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It’s OCD Awareness Week and CAMHS are still failing Autistic young people

Obsessive Compulsive Disorder (OCD) is one of the most misunderstood mental health diagnoses that exists. Misrepresentation in the media and everyday vernacular means that OCD has come to be understood as something that requires a meticulous attention to detail and love of order. The truth is far more upsetting for those who are diagnosed with this condition, and Autistic children and young people represent a significant portion of this population. despite this Child and Adolescent Mental Health Services (CAMHS) are failing to support Autistic children and young people with what can be a very debilitating experience.

How common is OCD amongst Autistic people?

“Autism is not a mental health problem, but as many as 7 out of 10 people with autism also have a mental health problem such as anxiety, depression or obsessive compulsive disorder (OCD).”

Hampshire CAMHS

Accordine to Meier et al (2015) people diagnosed Autistic were twice as likely to be additionally diagnosed with OCD, and those diagnosed OCD were four times as likely to later be diagnosed Autistic. Martin et al (2020) found that, of young people ages 4-17 years, 25% of those diagnosed OCD were also Autistic, with a total of 5% of Autistic young people being diagnosed with OCD. In contrast to this is the general population, of whom around 1.5% are Autistic (Baron-Cohen et al, 2018) and 3.5% are OCD (Fineberg et al, 2013). It is clear that OCD and autism have an complex relationship that warrants attention.

If OCD is so common for Autistic young people, how many are being treated by CAMHS?

According to Devon NHS trust 1 in 10 CAMHS patients are Autistic. I have spoken before about how alarming this statistic is (see here). To really capture the fallout of these failures La Buissoniere Ariza et al (2021) found that 13% of parents reported suicidal ideation in their child when autism and OCD co-occur. Please don’t forget that Autistic children in general are twenty eight times more likely to think about or attempt suicide (Royal College of Psychiatrists). OCD is not just a significant issue for Autistic young people, it is threatening their lives. Still, CAMHS are refusing to support these Autistic children.

What are the barriers to CAMHS supporting Autistic young people with OCD?

In my opinion, the biggest issue is professional competence. Myself and Tanya Adkin have written previously about her concept of neurodivergence competency. Despite Autistic children and young people representing a huge portion of the populations that need access to CAMHS, professionals do not have the skills to support them safely and effectively. This presents huge barriers to access to CAMHS because they are either turned away or given treatment that can have life threatening consequences.

If we wish to reduce the rates of suffering amognst Autistic and OCD young people, we need to fight for a CAMHS that not only lets us through the door, but also upskills it’s professionals, and creates an environment within which Autistic and neurodivergent professionals can work. There is more to be said about the hostile environment that has been created for Autistic CAMHS professionals.

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How do CAMHS make parents and carers responsible for their child’s struggles?

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’.

Clements & Aiello (2021)

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.”

The Guardian (2022)

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.”

Disability Rights UK (2022)

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.

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CAMHS Mistreatment of Autistic young people: A case study

I have explored (extensively) the issues with Child and Adolescent Mental Health Services (CAMHS) in England. The particular focus of my writing has been their mistreatment of Autistic children and young people. Something I haven’t touched on is there well documented mishandling of processes around the assessment and diagnosis of autism itself. This has been a point of contention for some time now between Autistic people and professionals. The following case study highlights mistake that in my opinion are all too common. The trust in question is Sussex Partnership NHS Foundation Trust (SPFT).

The background of the Autistic young person

“Person E’s GP referred them to the Trust. The Trust refused to accept the referral, as Person E did not meet its criteria.

Six months later, Person E’s GP made a second referral. The Trust accepted this referral. Complainant G then reported that Person E was unable to leave the house and would not communicate. The Trust agreed to visit Person E at home. During two home visits, Person E was physically aggressive and would not speak to Trust staff. At a third home visit, Person E spoke to the Trust staff. “

Parliamentary & Health Ombudsman (2019)

This section highlighted two issues for me. The first is the refusal to accept the referral. One of the biggest factors in such refusals are the school. Many of us will be familiar with the saying “we don’t see that in school”. This is highly problematic because not only does it miss the nuances of masking, it sets the stage for future practices of Institutionalised Parent/Carer Blame (IPCB) that can become accusations of Fabricated or Induced Illness (FII).

Something else I noted in the report from the ombudsman was the mention of aggressive behaviour and refusal to speak to CAMHS staff. Aggressive behaviour can occur for any number of reasons, but is usually indicative of emotional dysregulation (which is common for Autistic children in mainstream educational settings) or interoceptive stimming, implying a significant degree of unmet sensory needs.

“Person E was then diagnosed with autistic spectrum disorder. Six months later, the Trust sought to discharge Person E from its service. Person E’s GP then made a further referral to the Trust, which the Trust considered but did not accept. Person E’s GP attempted a further referral to the Trust. The CAMHS service was transferred to another Trust at this time, which continues to care for Person E.”

Parliamentary & Health Ombudsman (2019)

This particular quote is at the bottom of the background section. It is again stating something that is not so uncommon. It highlights that following a diagnosis, the Autistic young person was discharged from CAMHS services. This is despite the fact that the child had demonstrated clear signs of emotiona dysregulation and distress. I call this the “diagnose and ditch” approach.

What was the complaint towards CAMHS?

Image Reads 
"Complainant G complained that the Child and Adolescent Mental Health Services (CAMHS) at the Trust did not accept the referral from Person E’s GP in a timely manner and then did not provide a diagnosis or treatment for three years. Complainant G also complained that the Trust discharged Person E too soon.

Complainant G complained that the Trust refused to handle the complaint and referred it to another Trust. They also complained about delays in responding to the complaint.

Complainant G said that, as a result, Person E’s condition worsened until it reached crisis point. Complainant G said Person E has missed out on three years of education. They told us of concerns they had for Person E’s future health and the support they need. Additionally, Complainant G told us of the emotional impact on both Person E and the family."

I would like at this point to highlight thee bottom paragraph of this screenshot. It highlights that due to inappropriate discharge from CAMHS after being diagnosed Autistic, this young person missed out on three years of education. Rightfully, the person making the complaint was concerned for the future of the young person.

“There are over 160,000 autistic pupils in schools across England.* Over 70% are in mainstream school, with the rest in specialist education, home educated or out of education altogether. With this report, we sought to understand their experiences and found a deeply troubling picture.”

National Autistic Society (Back to School Report 2021)

The above quote demonstrates that 30% of Autistic children and young people are in alternative provision or no provision at all. One should note that accessing a suitable alternative to mainstream education can take years, and so many of those young people will have missed out on a significant portion of their education. CAMHS play a significant role in the negative outcomes associated with this issue.

What did the Ombudsman say regarding CAMHS?

“As a result of these failings, the Trust missed the opportunity to help Person E and the family develop the appropriate steps to support her mental health. Person E suffered prolonged mental ill health. Person E and the family were left without the ability to manage Person E’s condition at the time.”

Health & Parliamentary Ombudsman (2019)

The Ombudsman stated that CAMHS had failed by not allowing a proper engagement. This was due to inappropriate approaches to the child that could have been handled differently. They highlighted the needs for dynamic approaches to communication and behaviour, and highlighted that when approaches didn’t work, new approaches should have been employed.

They noted that CAMHS taking 18 months to diagnose, only to discharge, was a failing on the part of professionals that contributed to a significant amount of stress caused by a lack of support for the family to help their child. They note the lack of a care plan that would have designated the support needed for the Autistic young person.

All of these things are, unfortunately, a daily occurrence in CAMHS.

What were CAMHS required to do?

“We recommended the Trust pay Person E £1,500 for the impact the lack of treatment had on them. We also recommended the Trust pay Complainant G and the family £500 for the distress they experienced.
The Trust complied with our recommendations.”

Parliamentary & Health Ombudsman (2019)

The above quoted section was the only actionable recommendation made. Beyond this, the trust were told to apologise, and learn from their failings. The “we will learn from this” approach has been used for time in memoriam to avoid making any meaningful change to services. CAMHS staff need a completely new and restructured service that requires input and training from Autistic and neurodivergent people. Current training is significantly sub par, and Autistic children are literally suffering because of it.

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CAMHS have been contributing to the death of Autistic young people for over a decade

I was recently sent a BBC article regarding multiple deaths of Autistic young people occurring despite coroners issuing “prevention of future death” (PFD) notices. These notices are only issued when a person’s death is the result of systemic failings and are issued when changes need to be made in order to prevent future deaths. The BBC article looked through 4,000 PFD notices over the past 10 years, and what they found is harrowing.

What is the risk of suicide amongst Autistic young people?

According to the Royal College of Psychiatrists, Autistic children in the UK are 28× more likely to think about or attempt suicide compared to their neurotypical peers. 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 good old fashion gaslighting. Autistic people have a rough experience of the world.

It is unsurprising then that Autistic young people, whome some research estimates 94% are victims of bullying, so regularly experience such an inordinately high rate of suicidal ideation and attempts. We also have to consider that Autistic people often exist at the intersections of race, sexuality and gender, other disability, and class. As a result of this, their mistreatment may be compounded by multiple forms of marginalisation.

Why are CAMHS important to preventing the deaths of Autistic young people?

As mentioned previously, Autistic children and young people are significantly more likely to experience suicidal ideation or attempts. Where their is suicidal ideation, there is often psychological distress. I’m fact, according to the Mental Health Foundation; 7 in 10 Autistic people have a diagnosable mental health concern. From this, I infer that over two-thirds of Autistic children and young people need support from CAMHS.

Despite this very high rate of suicide and suicidal ideation, and mental health concerns, only around 10% of patients under CAMHS are Autistic. This represents a large disparity between the accessibility of services for Autistic and non-Autistic groups. This disparity is indicative of wider systemic failings in the support of Autistic children and young people and is supported by the BBC’s findings in PFD notices.

How are CAMHS failing Autistic children and young people?

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.

Quote from the above linked BBC article

The BBC investigation found 51 prevention of further death notices that pertained to the deaths of Autistic children and young people. 51 may not sound much amongst a group of 4,000, but it is. According to the National Autistic Society, over 1 in 100 (1%) people in the UK are Autistic. Of the PFD notices investigated by the BBC, around 1.3% were Autistic. This indicates to me that Autistic people are better represented in deaths regarding systemic failing than they are in the general population.

The screenshot below elaborates on some of the reasons found that control used to the loss of Autistic lives:

The five key concerns identified by the BBC as repeated issues in the deaths of Autistic children and young people, read article here.

What does this mean for CAMHS and Autistic wellbeing?

As I have discussed in previous articles about CAMHS; it is not enough to simply get through the doors at these services. We need them to be restructured and invigorated with new life. In their current form, CAMHS is not fit for purpose. Too many Autistic children and young people are losing their lives, and those lives are at the feet of a CAMHS that has time and again failed to do what it exists to do.

Autistic children deserve the same chance at a happy and meaningful life as any other child. CAMHS are not enabling that.

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