Autism and colour in a monochrome anti-neurodivergent psychiatric setting

I knew someone who was detained under the Mental Health Act section 3 for up to 4 years in 8 various units all over the country as a young girl, including psychiatric intensive care and secure units.

I knew someone who was so psychotic that she would run at walls believing they were portals and have to be restrained for 1.5 hours at a time.

I knew someone who was so suicidal that she would make many attempts on her life, ending in her having to be resuscitated.

I am Zaynab. I like to be called ZeZe. Unicorns are my best friends. My parents criticise me, saying I am not true to my heritage due to my inability to handle spice.

Remember that girl, I spoke about earlier. That was me, my younger self. I am victorious over my demons, namely psychosis and emotionally unstable personality disorder. Another part of me is that I am proudly autistic and a woman of colour.

When I was under the Mental Health Act, I was subject to many floor restraints, with 4-5 people holding me down to stop me from hurting myself or others. These restraints would last a long time and result in rapid tranquilisation injections, also known as IMs. Once I had 2 IMs in one restraint because of how unsettled I was. One day, I was hallucinating because I had stopped my meds. I started becoming aggressive and agitated so staff in my low secure unit pulled the alarm to get others to restrain me. My favourite staff member came up and told me and gave me a hug. In the end, I didn’t need the restraint, I just needed a hug from someone I cared about. All I needed was compassion and kindness, not injections and holding me down.

When I was under the Mental Health Act, I was psychotic and so paranoid that people were poisoning my food that I would that I wouldn’t eat anything. I had to be forcefully tube fed. The Mental Health Act t allowed this. It allowed staff to say to me that they would drag me up the corridor into the clinic to force feed me through a tube, if I didn’t comply.
When I was under the Mental Health Act, I was forced to wear stinky anti-ligature non rip clothing because staff were scared I would hurt myself. I wasn’t allowed to wear a bra or underwear with them on. If I was on my period and had to be in the clothing, it had to be cleared with the nurse if I was allowed pants on and if I wanted a shower, it would have to be cleared via a nurse.

I felt like a victim, instead of an empowered individual. It made me feel like less of a person. Normal things like showering, that had previously been taken for granted, was not allowed.

An important part of me is my autism. When I was sectioned, my autism meant I had unmet needs. I would mirror self-harming behaviour in other people in order to get a care response. I would see that other people would be nice to the patients who were the most poorly. Whenever I felt like things were too much, if there was a sensory overload or having a meltdown, I would meltdown and have these behaviours because I thought this meant that people would be nice to me and calm me down. This just resulted in the security being escalated. I was 5:1 in the community, with 5 staff stopping me from running into moving traffic and absconding. This was more of an autism aspect, I didn’t know how to deal with these difficult emotions and I would use negative coping strategies to deal with them because that was how others around me acted.

Being under the Mental Health Act showed me that hospitals are not the right place for autistic people. It was noisy and there many unpredictable changes to my environment that I didn’t know how to deal with, so I would self-harm and become suicidal due to it.

My autism means I don’t like being touched. When I would get into restraints, I would be in them longer because I would fight so hard to get these people off me. This was due to my sensory overload of being touched, it was instinctual to fight off others from lying on top of me. Staff used to joke about tackling me to the ground.
My autism meant that I didn’t know how to express myself and what emotions I was feeling. I had little emotional awareness. This meant that many psychological approaches did not work on me. I would then stay longer in hospital because I wasn’t compliant.

Another aspect of my Mental Health Act journey, was being a woman of colour. I was the only person on my ward with a personality disorder and who was brown. Most of the other patients were white. I was not used to living with white people and their traditions, such as eating roast dinner on Sundays. I would commonly ask, “Is this a white person thing? Because I haven’t experienced this before.” Other patients would call me racist for saying this.

Eventually those same patients would mock how I pray as a muslim. They would talk to me in an Indian accent, when actually I was Mauritian. People would ask me if I was born in the UK. There was no cultural competence. I didn’t feel visible. I felt different to others because of my skin colour. Nobody in psychiatric inpatient knew how to talk to me about race. Staff would call me homophobic, simply because I was muslim, despite me not expressing homophobia. I was told that I shouldn’t have had a personality disorder because I wasn’t white. Staff said the trauma that I had experienced was “normal for Indian girls”… I am not even Indian!

In between hospital admissions, I was put on a community treatment order (CTO). I was told that if I didn’t take my meds, they would recall me back to hospital. When off my meds, I would become psychotic so the point of the CTO was to prevent me from this happening. It was blatantly said to me that if I didn’t take my meds, I would be taken to hospital under a section 3 and staff would inject the medication into my bumcheek. The only place where I felt I belonged and was cared for was in hospital due to being so institutionalised so I would stop my meds and go psychotic whenever I felt distressed. Then I would go on a CTO, in a PICU and be injected. It didn’t solve the problem, just perpetuated a vicious cycle. Nobody listened to my distress and my need for a care response. They just saw a brown, autistic, mentally ill girl who was non-compliant.

If more work was done to provide compassionate care, taking into account my autism and culture, maybe I wouldn’t have been detained for so long.

The Mental Health Act White Paper

The Mental Health Act 1983 is a piece of legislation in England and Wales setting out when and how people can be detained (“held under section” or “sectioned”) and hospitalised for mental health treatment, even if it is against their wishes.

In 2017, an independent review of the Mental Health Act was announced, intending to address concerns about the rising number of detentions and disproportionate number of people from racialised communities being detained under the Act. It concluded in 2018 and you can read the report here.

In January 2021 the government released a White Paper on the Mental Health Act, setting out their proposals for future legislation based on recommendations made in the review. It is now open to a public, online consultation until the 21st April. You can read NSUN’s initial response here. After the consultation closes, final policy decisions will be made and a revised Bill will be released, “when Parliamentary time allows”.

The consultation is in the form of a long survey, and it is worth noting that you do not need to answer all of the questions. Depending on how much you know about the Act, it might be helpful to read more about the Act before you respond – for example, you can read Rethink Mental Illness’ resource on the Mental Health Act or their page on responding to the consultation here.

You can also watch NSUN’s Q&A webinar on the Mental Health Act White Paper.

Zaynab’s blog gives the perspective of what it was like to experience detention as an autistic woman of colour. The White Paper makes numerous proposals around issues of racial disparities and appropriate support for autistic people and people with learning disabilities. 

Broadly, The White Paper proposes to “reduce reliance on inpatient services for people with a learning disability and autistic people and to further ensure the availability of community alternatives”, stating that there will be new duties on Local Authorities and Clinical Commissioning Groups to ensure an adequate supply of community services. The White Paper also proposes to “legislate for culturally competent advocacy to be available to detained patients”, launch a pilot programme of “culturally sensitive advocates… to identify how best to represent the mental health needs of ethnic minority groups”, and reference the already-existing schemes to “diversify the workforce”, such as the NHS England and NHS Improvement (NHSEI) Advancing Mental Health Equalities Taskforce. The White Paper also proposes to reform the detention criteria as a whole, including for Community Treatment Orders (CTOs). 

At NSUN we are still formulating our response, but we have concerns that the proposed changes for autistic people/people with a learning disability might have unintended consequences, might decrease safeguards and might not stop people being detained in ATUs.

We are also concerned that the proposed changes will not address the over representation of people from racialised communities detained under the Act, and that the proposed changes to CTOs do not go far enough. 

You can share your thoughts and experiences directly with the online consultation, or you can email us (by the 16th April) so we can include your views in our response, which we will publish.