I have wanted to write this post for a while but somebody contacted me with a concern and it spurred me into action. The concern the person raised related to some people in the autism community being discriminatory around mental illness, in particular psychosis. This topic is of key interest to me because I am an autistic person with schizophrenia (well technically schizoaffective disorder but few people outside of psychiatry know what that is!!) I have had a number of psychotic episodes and know that there is a lot of misinformation about the condition and definitely a lot of prejudice. While I haven’t faced a lot of prejudice within the autism community myself I know it is out there.
My previous blog with my former name was called ‘Jeanette Purkis All Things Autism and Mental Health’. I regularly had people pulling me up and telling me that autism is not a mental illness. I am actually aware of that fact. Autism is a neurological condition whereas mental illnesses relate to psychological issues (thinking and behaviour) and brain chemistry (neurotransmitters – things like serotonin and dopamine). The reason for the title of my earlier blog related not to me conflating autism and mental illness but to the fact that I am an autistic person with a mental illness.
I sometimes have autistic people contact me and state that autistic people do not have mental illnesses. This seems to come from an almost elitist view that autistic people are ‘pure’ and mental illness somehow contaminates us. It is as if we are beyond mental illness. This is nonsense. Autistic people are actually more likely to develop a mental illness than allistic people. This is due to a range of factors including us experiencing trauma at high rates. There is research being done on prevalence of mental health issues among autistic people. Anecdotally, most of the autistic people I know have some kind of cooccurring mental illness.
In terms of schizophrenia, there are some unhelpful views among clinicians. For one this schizophrenia can be an incorrect diagnosis given instead of autism. I have been on antipsychotic medication for 25 years and I can attest that you wouldn’t want to take those medications if you didn’t need to! Misdiagnosis of schizophrenia instead of autism seems to happen more to men but can happen to other genders too. My schizophrenia diagnosis does seem to be correct but I had an issue with another unhelpful attitude among clinicians. A former psychiatrist who was treating me read a paper saying that autistic people could not have schizophrenia. The author of the paper had the idea that autism and schizophrenia were mutually exclusive. This meant that the doctor didn’t take my mental illness seriously. I asked to change one of my antipsychotic mediations and, because he thought I did not have a psychotic illness, he did the medication transition very quickly. Guess what? I had a major psychotic episode. Psychiatrists scare me because they have so much influence and power over people in their care. And I am fairly certain that autistic people can also have schizophrenia regardless of what some researcher thought!
Stigma is a big issue for people with psychotic illness. Even the word psychosis is mistakenly used to describe someone who is violent. I cringe every time I hear a character in popular culture described as psychotic when what is meant is that they are violent or unpredictable. Psychosis doesn’t necessarily equate to violence. It is a mental state where reality doesn’t make sense. People might get paranoid thoughts or think strange and frightening things. Many people experiences voices, often saying threatening things. In my case I hear people insulting me and saying mean things and I also hear my name being called when in fact it isn’t. I also see things – often ghosts or distortions of real objects. I have intrusive thoughts where I am commanded by a will that is not my own to do some action which I really don’t want to – often related to self-harm. Psychosis involves inhabiting a sort of alternate and usually very scary universe. It is more a reason to support a person than to judge them.
A lot of the stigma I experience as a person with schizoaffective disorder comes from myself. It took me seven years to accept I was autistic but my mental health diagnosis is 25 years old and I still haven’t accepted it properly. This stigma is probably based in the stigma society has but it makes my life very challenging. On Monday I am starting on an anti-psychotic medication called Clozapine. This is a pretty heavy duty medication and only has one use – treating treatment-resistant schizophrenia. Anticipating the new meds is causing me to face up to some of my self-stigma and it is hard. Nobody deserves stigma. I know I don’t. For autistic people with mental illness life can be extra challenging and there is no need for additional discrimination from people within our community. I want to see a world where people don’t contact me concerned about being discriminated against due to their mental illness. An illness is a reason for support and understanding not for discrimination and stigma. Those of us in the autism community also face stigma and discrimination which I hope helps us to demonstrate that support and understanding to those with a mental illness amongst us.