Activists all have a story or defining moment that propelled us into action. For me, it was being detained against my will for three and half years – at times, hundreds of miles away from home. My crime? Being different. I’m autistic. Autism – a different way of ‘being’ and experiencing the world – can’t be treated. Many autistic people do not want to be either. In a 2018 survey conducted on 11,521 people, 72% of respondents with autism asserted that if there were a cure they would not take it.
Yet every year, hundreds of autistic people and those with learning disabilities fall victim to detention under the Mental Health Act, where human rights abuses are often prevalent and sanctioned by 38-year-old legislation. That’s why I welcome last week’s Government proposals to reform the Mental Health Act, which will ensure that mental illness is the reason for detention, and not autism or learning disabilities, in themselves.
Eight years ago, I was working as a teacher. My life was orderly and I was a little quirky. Nobody complained too much! But my crisis began after the death of my brother and the birth of my first child. Routine and structure are essential for autistic people. Death brings an element of immense grief to families and life is upturned. When you add to this a new baby, my predictably boring and ordered life was falling apart.
A typical autistic reaction to overwhelming change is overload. I became sensitive to sensory input. For example, bright lights, noise and clothing was more than irritable. It hurt. I didn’t understand what was happening and so I asked for help. Following the advice folk are given when feeling mentally distressed, I asked for help from my GP and mental health services. Who could imagine that a seemingly innocuous 72 hour ‘rest’ in hospital to have my needs assessed would lead to the biggest mistake of my life.
The environment aggravated my autistic disposition; hospital life was busy and chaotic, sensory charged with bright lights, loud noises, and people constantly coming and going. In the ward I reacted to the closed in environment by becoming even more overloaded. My clothes were uncomfortable and it felt like my skin was burning, my eyes were on fire and someone was drilling into my ears.
Usually I would regulate my sensory needs by running. However, the doors were locked and I couldn’t leave the surroundings that were causing my autistic disposition such distress. This led to meltdowns, which led to restraints. A meltdown happens when your brain is overwhelmed and can no longer process information. It is painful and feels very uncomfortable. Your head feels like it will explode. In total I was restrained 97 times, secluded 17 times and endured long-term segration.
I was detained under Section 3 of the 1983 Mental Health Act for treatment. My daughter, who was being looked after by my parents, was just nine months old at the time. Yet no treatment came because you can’t treat autism. It’s not an illness or a disease. Like every other autistic person in hospital, I reacted to my new normal in the only way I could: in an autistic way. Staff would try to reassure me, but their close proximity, touch and the additional noise from their talking felt unbearable and would lead to more meltdowns.
I was drugged against my will, restrained and segregated. Once, I was locked in a room for eight days with nothing more than a mattress. I ate on the floor and didn’t see the outside world. Yes, in Britain! In the 21st Century! It made me feel sub-human. After three and half years, moving between 12 different hospitals I became institutionalised, addicted to prescription medication and disconnected from the outside world.
But when, under Section 3 of the Mental Health Act, my psychiatrist decided to renew my detention for a further 12 months, I embarked on a daring escape, catching a ferry from Dover to Calais, travelling to Paris, and flying to Dubai – before landing in Lagos, Nigeria.
My daughter was able to join me a few weeks later, when I had settled into my new house and secured full-time employment as a teacher once more. Soon after arriving, I began writing my memoir, Unbroken, about learning to live beyond my diagnosis and my experience of detention. I have also campaigned relentlessly about the systemic issues faced by autistic people – appearing in the media, at national conferences, and public institutions in the UK like schools and police training centres – and joined forces with the National Autistic society to start a petition, calling to end the unwarranted treatment of autistic people and people with learning disabilities in inpatient units.
This petition attracted almost a quarter of a million signatures and was delivered to Downing Street in the summer of 2019. I am delighted that many of the proposals we asked for have been reflected in the Mental Health Act White Paper. After five years living in Lagos, it’s only in the past month that I’ve felt safe enough to return permanently to the UK. The first time I came back was for a training course after almost a full year away. I was arrested on arrival because my records hadn’t been updated to reflect that I was no longer sectioned under the Mental Health Act.
This further compounded the trauma. I was released after six hours and didn’t have any problems after that. Today, over 2,000 children and adults with autism or learning disabilities remain locked up. This should be regarded as a national scandal. Institutional care can and does lead to events such as those at Whorlton Hall, where staff threatened, mocked and were violent towards patients. What’s more, millions of pounds are spent on keeping people behind closed doors.
I wouldn’t be surprised if my time in inpatient care cost the state a couple of million – a waste and misuse of taxpayers’ money. But the new proposals firmly suggest that money currently spent on locking up autistic people and those with a learning disability should instead be spent on community services, where people can be treated in their own homes or closer to their families.
If this had been the case for me, I estimate that it would have cost less than £5,000.
Metro News
