ASD + Bars: Hi I'm Zoe

My name is Zoe. I am 20 years old and I live in England. As a teenager I was detained (sometimes called ‘sectioned’) twice under my country’s Mental Health Act (MHA). I even spent my 17th birthday in hospital. It was a very distressing time. I don’t remember all of it but what I do recall still upsets me. Thinking about it makes me cry. I’m crying now as I type. 

Thankfully I haven’t needed another admission since then, but I am still very affected by my disabilities. You might be looking at my photograph and asking yourself, ‘What disability?’ It’s called Asperger Syndrome, which is an Autistic Spectrum Disorder (ASD). I also have bipolar mood disorder, another life-long condition. Disabilities like mine, which are not obvious at first glance, are called ‘hidden disabilities’. If you met me, you wouldn’t notice anything was amiss - not at first anyway. Yet my conditions do affect just about every part of my life.

Me (and my mum) telling mental healthcare workers about my experiences in hospital

I am trying to find my way in the world and this includes having a zero-hours job as Integritas’ autism and disabilities advocate (ADA). It helps that my mum is the chief medical officer and my dad is on the board, so they are around to help me when I need their support with this work. I am so lucky in this regard. Most young people with autism are completely out of employment, yet alone those who have another mental health challenge like my bipolar mood disorder.

In addition to their Integritas roles, both my parents are jobbing English prison doctors, and my mum has a special interest in mental health. So I’m quite used to hearing talk about the problems of caring for detained patients who have mental health issues. But my own lived experience of having been detained in hospital has given me personal insight into what needs to change for autistic people held in hospitals, prisons and other types of secure environment around the world.

And so throughout 2022 I’m going to be exploring various aspects of detention that affect detainees with ASD who may also have additional mental health needs. My intention is to help raise awareness and advocate for positive change. I do hope that you read my series and tell other people about it.

Until later this month…

Miss Zoe Pickering

PS If you’d like to support my work on this series, please donate to our Winter Appeal.

Autism Awareness in April

Today, the last day of April, marks the end of Autism Awareness Month, raising awareness about a condition that is close to our hearts…

There are around 11 million detainees in the world. Autism affects around 1% of the population. So in theory that’s approximately 110,000 autistic people behind bars across the world. However, we know that autistic people are over-represented within some secure environments - for example, one English prison found that 4.5% of its population had an autistic spectrum condition. Outside of work I care for an autistic person so I am more aware of the condition than your average UK doctor, and I take this awareness to my job as a UK prison GP. Most weeks I spot patients who are quite obviously autistic yet who have got to an advanced stage of life without it being formally diagnosed or even recognised as such.

Regardless of exactly how many autistic people are behind bars though, they are some of the most vulnerable detainees. It fills me with sadness that they live in stressful, unsuitable environments. I still remember with horror an incident from the earlier days of my career behind bars, when I attended the death scene of an autistic man. My colleagues and I had tried to help him, but his despair was too much for him to bear. He managed to kill himself despite our best efforts to prevent him from doing so. It was a tragedy.

Whilst the UK’s criminal justice system still struggles to know what to do with autistic people, it is encouraging that a small minority of the UK’s prisons have succeeded in the challenge of achieving accreditation with the Autism Accreditation Service, which is provided by the National Autistic Society (NAS). One of these accredited prisons is HMP Wakefield, a high secure estate; another is YOI Feltham, a notoriously busy young offenders institution. If these particularly challenging secure environments can do it, then surely all other UK detention settings could manage to follow suit.

As a medical organisation with a heart for detainees, we’ve spent April considering how to amplify our autism & disabilities advocacy. We welcome all suggestions. But for starters, we’ve decided to become NAS-accredited ourselves. Why not turn to organisations within your sphere of influence and draw their attention to this fabulous scheme?