This is not easy to write. It’s painful, as I understand the suffering caused when autistic people are mistreated and unnecessarily detained. Both my mother and a close friend experienced this and it leaves an indelible mark on your life.
My mother, autistic but missed and misdiagnosed, was held under section on numerous occasions throughout my childhood and the last time she was sectioned was when she was in her 60s, when she was detained in The Bethlem Royal in Beckenham, London. From her late 20s until her last breath at 81, she was ‘mistreated’ with every psychotropic drug you can name- I know them all and I can still list them also.
The Bethlem Royal hospital was a hell hole and true to its history (Bedlam). They treated her appallingly, taking her off several psychotropic drugs so quickly that she experienced withdrawal fits and had to be rushed to A&E. Thankfully she did recover, but for a period completely lost her memory and didn’t know who we were. This led to an investigation by the GMC and an apology; she easily could have died at their hands.
It is clear to me now as a late identified and diagnosed AuDHD person, that my mum was also autistic; this accounts for what were clearly meltdowns. The meltdowns that led to entire rooms being destroyed, hammers and large pieces of furniture being thrown through windows and the blood curdling screams. She was an extremely traumatised and vulnerable person, from having experienced years of abuse throughout her life. Fawning led to exploitation and victimisation by many men, including a serving police officer, her probation officer and even a CPN. I was very little at the time, but I remember them all clearly. Autistic more vulnerable to being victimised by people they know - in fact 50-89% have been according to a study by Keiran Rose and Dr Amy Pearson:
Environments that are not in sync with the differences and different needs of an autistic person (social, communication, executive functioning, sensory, emotional, etc) will potentially harm them - just like expecting a polar bear to thrive in a desert. Environments include all the systems and structures within them; schools are a good example of this and their systems and structures are harming our neurodivergent children. There are some stark statistics such as that 83% of autistic children and young people are traumatised by school* and I believe that many of these autistic young people are experiencing burnout; for the majority it was the school environment that traumatised them the most. Many have a PDA profile and many again are also ADHD and this has often never been diagnosed and medication put in place (which can be life saving for someone who is ADHD). Because burnout is too often not understood by teachers, medical professionals, CAMHs, social workers, the child or young person’s experiences are misinterpreted and the wrong support given. I have been contacted by several CAMHs workers recently who have started using a book I wrote for parents about autistic burnout. They have said that they now understand that the way they were working with and were being told how to work with autistic young people in crisis- was all wrong and causing more harm.
What happens when an autistic person is not in the 'right' environment? By right environment - I mean safe. By safe I mean an environment where an autistic person can be their authentic self more often and not experience sensory overload, othering, bullying and victimisation. Wonder why so many autistic children are home educated? Because being home educated is likely to be a more flexible, low demand environment, where often the child can explore their passions and interests (self directed learning). Plus they are also more likely to come across other autistic children they connect with. Sadly home educating is inaccessible for most people. I have however never had the parents of a home educated autistic child contact me because their child was experiencing burnout. I think that says a lot.
I know of numerous autistic people, including young people, who have ended up in a&e because they are burnt out, traumatised, self harming and in a state of extreme distress. In a&e they have ended up in a meltdown, due to increased anxiety, caused by sensory overload and the many demands of such a highly charged, over stimulating environment. During a meltdown (an involuntary trauma response- fight/flight) an autistic person may say and do things that can be judged and experienced as threatening; rather than the autistic person, who is terrified, being able to access a safe, quiet place to regulate, the situation can escalate and police are then called. The police officer’s understanding of the situation and understanding of how to help an autistic individual in distress, can be the difference between the autistic person being helped to regulate and feel safer, or ending up restrained and potentially even committing an offence against the police officer. Restraining an autistic person can not only be extremely distressing, but excruciatingly painful (heightened sensory sensitivity). It can be a disastrous experience that can lead to involvement in the criminal justice system and even a prison sentence for older autistic young people and adults. It may however also lead to an autistic person being judged as unsafe by staff, social workers and CAMHs, then being sectioned and detained under the mental health act (despite autism not being a mental health disorder).
Burnout can look very extreme to people who don’t understand it. PDA burnout can mean the child, young person (or adult) may struggle with intensely amplified demand avoidance and sensory overload, leading to significant changes in self care, not being able to wear clothes and not being able to leave the house for years. For many autistic young people (PDA or not) they might experience very troubling intrusive and suicidal thoughts and self harm. AuDHD (autistic and ADHD) burnout can in some people present like psychosis (and may be in some cases) with the individual experiencing hallucinations, becoming very agitated and unable to regulate at all. If this is assessed by professionals through a mental health lens, which it often is, then the autistic young person will get the wrong support and input.
Once sectioned, getting out of the psychiatric unit is then the concern, as too many young autistic people have ended up held for years- they go in because of burnout and they end up in a permanent state of burnout, experiencing regular meltdowns and shutdowns that are not dealt with appropriately and treated as 'bad behaviour'. The environment in a unit is not suitable for any autistic person and recovery is potentially impossible or extremely unlikely for many due to:
The sensory trauma they will be experiencing (lighting, noises of the other people in the unit, temperature of the environment, doors slamming, sound of TV/music/games, people talking, food and not being able to eat safe foods, not able to use white noise etc to aid sleep, etc
No alone time, space - always around people
Picking up on the emotions of others in the unit (hypervigilent)
Use of PBS - (rewards and punishments) that are not suitable for autistic people especially
No/very little autonomy
Routines and structures that may actually distress a person who is PDA
Uncertainty can cause many to feel extremely anxious
No access to a co regulator (essential for those who are PDA)
Constant changes of staff
Regular assessments and expectation to engage (and 'be good')
Therapeutic interventions that are unsuitable for an autistic person
Staff unaware of how to help and support an autistic person who is distressed
So is it possible that many if not most of the autistic young people in our psychiatric units are actually burnt out? I certainly think it is very likely. I am not saying that there are never circumstances when an autistic person needs to be detained for their own safety, but we have to have suitable environments. But in most cases detaining them is not appropriate and causes more trauma and more harm. We need more people (SENCos, CAMHs, social workers, first responders, etc) to understand autistic/neurodivergent burnout and understand what helps and what makes matters significantly worse. We need early identification and for school environments to be more neuro inclusive. The earlier an autistic child's needs are met, then when they hit puberty and start senior school (when they are more likely to experience burnout) - they are less likely to hit crisis and burn out.
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