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.