See also Mail report and video on Alexis' story here.
Academically and athletically gifted, I soared through my youth. Yet I wasn’t ever considered normal. I didn’t socialize adequately with her peers, social norms passed me by and I had intense special interests and an unusual sensory system.
I have been rather lucky because I have always ‘just’ managed to manage. In fact, in sport and academia my difference had always been my strength. It took a series of unexpected life events to knock me from my carefully constructed life. A life which was characterized by maintaining equilibrium. The birth of my child and the death of my brother was the tipping point and I descended into chaos. Overwhelmed by my response to grief, I came to realize I was not like others in my reaction. Following the advice given to me by society and friends I asked for help from doctors and mental health services.
Initially I was offered a rest in hospital for 72 hours. Of course, I followed the recommendation. Doctors know best right? It wasn’t long before I was acting exactly like the crazed mental patient they thought me to be. I couldn’t manage the unrelenting daily struggle to manage a sensory charged, chaotic, and routineless environment. An environment which couldn’t have been more different from my community life. I had little control over anything. Routine, control and the pursuit of special interests are important for someone with autism. You can imagine I didn’t respond well and I was detained under the Mental Health Act against my will.
I became everything they feared I was. I would react—badly—I would meltdown. This confirmed I was mentally ill and my brain faulty. Their response was to intensify the treatment, restrain me for my safety, inject me to ‘treat’ me and seclude me for god knows what reason. What really happened was a daily invasion of my Human Rights.
I remained in acute care for the next year and half with the occasional trip to Psychiatric Intensive Care. I was always sent their when my sensory system was overloaded and I was melting down too frequently. Quite honestly, I found PICU a welcome break. Although more prison like, it was routine and regimented. Yes, I was treated like an inmate at times however staff there seemed to care and my sensory system got a rest.
I found myself struggling for years, with diagnosis after diagnosis landing on my shoulders—7 in total. I was told repeatedly by doctors that I was dangerous. Restrained 97 times in total and secluded 17 times (although it was more than this—they only recorded 17 times) I tried desperately to become the person the system wanted me to be. It turns out that I couldn’t change my neurological make up any more than they could and so treatment was pointless.
It wasn’t until I went to specialist placement in York, called The Retreat that I was treated well. I was diagnosed with autism after a long assessment process and I was discharged to go to a specialist autism placement for assessment and treatment. Here I experienced the worst kind of torture with daily breaches of my human rights.
I document all of this is my book and so I won’t go into it all here except to say that being locked inside a cage is one filled with subversion, control and punishment. They foster a culture of submission, remove personal autonomy and life is chaotic and reactive, contrived and inauthentic. How on earth can anyone think that is helpful for someone with autism? It seems to me that what people need is exactly the opposite of what is provided. And it meets the criteria for torture.
The treatment irrefutably meets the criteria of being intentional. From police interventions to the involuntary detentions to the mind-altering drugs. Added to this were the sometimes degrading and inhumane conditions to which I was kept—like in segregation for 8 days in the ATU where I was fed on the floor as there was no table. Or perhaps the time when I was forced to urinate and defecate in the seclusion room as there was no toilet. These acts caused severe pain and suffering at the time which I fear will never leave me.
The treatment was discrimination by another name. They tried to ‘treat’ my differences (autism) against my will. No effort made by certain staff to communicate with me in a way I could understand or develop strategies for me to manage my distress. When I complained I was told staff were not trained in autism and that I needed to understand that and their limitations. Their intentions were always ‘good’.
Coercion and intimidation occurred without awareness by many professionals as they tried to enforce interventions to cure me. In some instances, coercion and intimidation were blatant as I was forced to agree to treatment such as medication. I was coerced and intimidated into changing my behavior in order to enjoy basic freedoms like fresh air, food and water, and leave to see my daughter. I was punished when I didn’t comply.
Persistent efforts by psychiatrists and nurses to get me to admit that (1) I had a mental illness, (2) that their drugs helped, and (3) that the ‘interventions’ were working, surely meet the purpose of obtaining a confession.
Punishment happened routinely, through heavy medication when I was considered difficult, and through the removal or reduction of my section 17 and courtyard time, occupational therapy activities or anything else I enjoyed.
I suggest that anyone existing in these torturous conditions has the potential to feel the way I did. I should have been protected by Human Rights law—my Right to Liberty for example—to live my life without having to worry that because of my differences I might be locked away.
I realized that the care was destroying me. I was left, after 2 years feeling completely helpless and I tried to take my life on 30th April 2015. I was resuscitated after being found by a helicopter. I was once again transferred to PICU where I started to recover again.
Then I was transferred to back to the acute mental health system and then to a community rehab unit. All of this time I was detained under the Mental Health Act on a section 3.
In April of 2016 my section was renewed for a further year. I just couldn’t be ‘normal’. I was still autistic and they didn’t like my reactions to things. I had been assessed for PICU again but they had refused the referral due to my diagnosis of autism. I had heard I was going to be transferred to medium secure—St Andrews or locked rehab in Keston, London.
Facing a life behind locked doors, I managed a daring escape to Africa. I have rebuilt my life, written my book, Unbroken, and speak out for those still being victimized. I feel completely ‘normal’ with all of my quirks, weirdness and uniqueness in an environment that accepts me for who I am.