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?
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.Parliamentary & Health Ombudsman (2019)
The Trust complied with our recommendations.”
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.