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Dec 2 2023
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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David Gray-Hammond 0 Comments
Nov 16 2023
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.

Self-medication-

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.

Addiction-

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.

David Gray-Hammond 0 Comments
Nov 14 2023
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.

What can you do to support the CAMHS crisis campaign?

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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?…

David Gray-Hammond 0 Comments
Nov 10 2023
On being the neurodivergent child of an alcoholic parent

This article is an anonymous guest post

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.

David Gray-Hammond 0 Comments
Nov 1 2023
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 How you can help 1. Sign the petition 2. Sign the open letter 3. Sign up for the CAMHS crisis mailing list 2. Share the articles about CAMHS Call to action Please send a video fo 2 minutes or less about your experience of CAMHS failures for us to use in a YouTube film. (Send to david@dghneurodivergentconsultancy.co.uk)
  1. Sign this petition
  2. Sign this open letter to the health secretary
  3. Use the form below to sign up for the CAMHS crisis mailing list
  4. Share this article and the others on social media, other articles can be found here
  5. 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.

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David Gray-Hammond 0 Comments
Oct 31 2023
Being an Autistic bullying victim led to my schizophrenia

At this time of year I often find myself reflecting on my experience as a Schizophrenic person; October 2023 marks 15 years since it became clear to me that I have a psychotic condition. The world is abjectly cruel to Autistic people. Life as an Autistic adult is incredibly difficult, and my life as an Autistic young person was no different. School was a nightmare for so many reasons, but one of the defining parts of my experience was the incessant bullying I experienced. I recently discussed my experiences with being Autistic and Schizophrenic, but I think it is important to recognise how bullying by both students and teachers contributed to my psychosis.

My experience as an Autistic bullying victim

The bullying started in Junior school. For those outside of the UK, junior school is years 3 to 6, roughly aged 7 to 11 years old. Students had realised I was different. I was far beyond them academically, I wasn’t interested in sports or typical “boy” things. I communicated differently and socialised differently. Teachers at the time would tell my mother that the bullying was my fault for being different. If only I would act more like everyone else, I would be much happier. I was undiagnosed Autistic, and rather than accept my differences, teachers sought to extinguish them.

Secondary school (high school to my American readers) was no different. The main addition was that I was being assaulted physically on a daily basis. Every part of who I was became a target for other young people. Even those who had no record of bullying would treat me badly. I was unable to trust anyone, least of all teachers. My school was known as a good place to send your children, and yet the teachers at that school drove me to the point of wishing I was no longer alive. It was a frightening and lonely experience.

How does this relate to my Autistic and Schizophrenic experience?

I experience a great deal of paranoia. Voices have historically focused on how I am not real, the world is not real, that people are planning to harm me. They have also tried to convince me that I am unsafe with people I love. This in itself is an isolating experience, but I feel it is deeply connected to the trauma of my educational environment. Teachers would lock me in rooms, shout at me, tell me I was lying about the way I was treated in school. I was gaslit and abused by the people who were meant to nurture my learning. The constant fear of bullying and assault by other students left me feeling as though I could be attacked at any moment.

I believe that the hallucinations and delusions I have experienced as a Schizophrenic person are intimately linked to the way I was treated in school. School may not have been the whole story, but it formed a great deal of the trauma that I struggle to reconcile to this day. Even writing this, I feel a sadness for the child I wasn’t able to be. A child that needed support and protection from the school, but instead learned that his reality and the people within it was untrustworthy and volatile. The truth is that since my school day’s I have felt alone, trying to make sense of the cruelty of this world. All because I was different.

What was the fallout of bullying a young person into schizophrenia and psychosis

In October 2008 I began hearing voices. A week later I would smoke cannabis for the first time. Within a month I was drinking and smoking cannabis almost daily. By the end of 2010 I was daily using drugs such as mephedrone (MCAT), ketamine, ecstacy, and speed. By 2013 I was using opioids such as tramadol and dihydrocodeine (DF118) on a daily basis alongside high doses of Diazepam (Valium). Within a year I would be a patient at the local A+E on a weekly basis for morphine and oxycodone overdoses. In 2015 I was faced with a difficult and life changing choice; get sober or die. I did get sober, but it cost me two lengthy stays on a psychiatric inpatient ward.

We have to stop the bullying of Autistic young people

Autistic people report bullying in up to 50% of cases. Remember, that’s the ones who report it, many of our young people deal with this pain in silence and isolation. I highly recommend reading this study by Pearson, Rose & Rees (2023) about the victimisation of Autistic people. Bullying and victimisation is costing our lives every single day. Even those of us who do not die in the literally sense face the loss of our happiness and connection to the world. This kind of bullying tears apart the mind and leaves us to try and reassemble ourselves in a world that keeps undoing our healing. We deserve better, our children deserve better.

It’s time the world did better.

David Gray-Hammond 0 Comments
Oct 30 2023
What is unique about my experience as an AuDHD Schizophrenic person?

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

Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look
Autism and psychosis: The elephant in the room
How common is psychosis for Autistic people?
David Gray-Hammond 1 Comments
Oct 24 2023
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.

David Gray-Hammond 0 Comments
Oct 21 2023
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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David Gray-Hammond 0 Comments
Oct 10 2023
Autism and Paranoia: Autistic pattern recognition when it runs away

Autism is not something that is generally associated with paranoia, but as you will see from previous writing on the topic, it is an issue that needs to be given consideration. Research as far back as 2011 (King & Lord, 2011) has indicated that there is a growing belief that autism and schizophrenia may be part of a single spectrum. As an Autistic and Schizophrenic person, I am inclined to believe they might be, the relationship between the two feels complex and nuanced, so it should come as no surprise that paranoia is a topic that needs attention.

Is there a difference between Autistic paranoia and Schizophrenia paranoia?

Research has indicated that paranoia in Autistic people occurs at a similar rate to Schizophrenic people, but Autistic people experience it more on the basis of social cynicism (Pinkham et al, 2012). Social cynicism is a broad category, but to my mind it has to do with our pattern recognition skills. Autistic people grow up in a world that is inherently traumatic, and learn to predict outcomes in order to defend the small amount of wellbeing afforded to them.

This elevated sensitivity in pattern spotting can at times get out of hand. When we are in meerkat mode or atypical burnout, we may start seeing data points that would usually be considered anomalous background noise as something meaningful and connected to real world occurrences. This associative thinking can create feelings of paranoia and persecution, which in turn adds to our dysregulation, making it more likely that we will form these abstract connections. When we combine this with a cynical attitude towards our society, it is easy to see where the problem begins.

How does this differ to people who are Autistic and Schizophrenic?

In my own experience, my paranoia is considerably more bizarre than the average burnt out Autistic person. I experience delusions that are often abjectly impossible as opposed to many Autistic people who experience paranoia that has a more tangible and realistic pattern to it. Mazza et al (2022) found that Schizophrenic people struggled to understand social scenarios, as opposed to Autistic people who were more likely to misunderstand people’s intentions in social situations. We can consider that the additive effect of this is an increased susceptibility to gaslighting, which as a traumatic occurrence in itself may well feed into our paranoia. When you are Autistic and Schizophrenic, the people around you have a great deal of influence on your wellbeing. Paranoia can be intimately connected to the views of the people in your life.

Autism, paranoia, and co-regulation

Autistic people experiencing paranoia often (anecdotally) report decreased interoceptive sensitivity and struggle to regulate their own emotions. This is where co-regulation with a safe person is absolutely vital to recovery. When we are unable to create feelings of safety on our own, it becomes necessary for another person to share their calm and rationality with us. This can be particularly problematic for households where dysregulation is the norm, heightened emotions of those around us can elevate feelings of paranoia and create self-fulfilling prophecies.

Social factors in Autistic paranoia

Minority stress plays a significant role in the psychological wellbeing of Autistic people (Botha & Frost, 2020). When considering minority stress, we have to consider the cumulative stressors that come together to create minority stress. Howlin (2013) discusses how Autistic people have less positive educational outcomes, as well as being poorly served by health and social care settings. We also have to consider the class divide, intersection with race, gender, and sexuality, and social isolation. We are a population who face very negative socioeconomic outcomes. This can create strong feelings of distrust in the system and a sense of persecution by a society that dictates our assimilation regardless of whether it is the right thing for us.

This is just a brief look into the world of autism and paranoia, but I believe it highlights some key issues that deserve further research and support. In the meantime, the best thing we can do for our Autistic loved ones is to create a safe and accepting space, free from the demands and alarming patterns of our abusive society. For the issue to be solved, society needs to be changed at it’s foundations.

David Gray-Hammond 0 Comments
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