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How common is psychosis for Autistic people?

It’s no secret that the list of co-occurring traits and conditions that fall within the world of autism is exceptionally long. Autistic people tend to be multiply neurodivergent as well as having various health concerns. Despite this, there are certain aspects of Autistic experience that are not well discussed within our community. One of these things is psychosis.

Psychosis is more common in Autistic populations than people realise. Research suggests that almost 35% of Autistic people show traits of psychosis with up to 60% of Schizophrenia patients demonstrating clinically significant traits of autism. When we consider these statistics, it becomes clear that this is an issue that needs to be discussed more openly in our community. Unfortunately, due to the intense stigma surrounding psychosis, it often feels unsafe for people to have this conversation in public places.

Part of this issue is highlighted by the lack of mental health literacy regarding psychosis. One study found that 86% of participants could accurately identify traits of depression, as opposed to only 41.5% of participants accurately identifying traits of psychosis. To me, this is a result of media portrayals of psychosis. The term psychotic is often used as a synonym for dangerous and unstable. Schizophrenia is often mistakenly conflated with Dissociative Identity Disorder, and both demographics find themselves falling foul of movie directors who want to portray a dangerous person.

Within the Autistic community, there can be issues with getting people to speak up about lived experiences of psychosis. Fear of stigma and misunderstandings about this admittedly extreme manifestation of psychological distress can keep people silent, while others want to keep autism separate from perceived “mental illness”. This is problematic because it represents a significant risk of early mortality.

Autistic people are 9 times more likely to die by suicide with one of the primary causes of premature death in people who experience psychosis also being suicide. One might wonder of these findings are intrinsically related. The combined minority stress of being both Autistic and experiencing psychosis could represent a significant factor in the premature deaths of both demographics. Unfortunately, the research on this particular interplay is almost entirely non-existent. We need the discussion around autism and psychosis to open up in order to highlight contributing factors to these troubling statistics.

It isn’t surprising that psychosis is so prevalent in Autistic communities. Psychosis and trauma have an obvious correlation with population based studies showing a strong relationship between childhood trauma and abuse, and the emergence of psychosis. When we consider the effects of minority stress, whereby Autistic people suffer from the cumulative effects of systemic discrimination and oppression, we begin to see a world where in being Autistic almost becomes synonymous with being traumatised in some way.

Something else that is important to consider is the overlap between autism and ADHD. Research suggests that as many as 70% of Autistic people also present clinically significant traits of ADHD. one study found that 32% of adults with a history of psychosis reported ADHD traits starting in childhood with up to 47 % of those with childhood-onset Schizophrenia also presenting as ADHD. We also need to consider that both Autistic people and ADHD people have a significant likelihood of using substances. Substance use and psychosis have a significant enough relationship that there are specific NICE guidelines around this issues.

It is clear that psychosis is a significant issue in regard of the psychological wellbeing of Autistic people. In order to address these issues and create a world where Autistic people can thrive, we need to start talking about this. We also need to address lack of professional cultural competency in Autistic experience and presentation that may result in the connection between autism and psychosis not being identified in clinical and research settings.

Autistic people need good quality identification of psychosis and suitable support for their psychotic traits. Failure to do so is literally placing our lives on the line and failing a growing demographic within our population.

CAMHS refusal to work with Autistic children violates ethical standards created by the House of Commons

If you are unaware of current issues with CAMHS, you can catch up by visiting my CAMHS Crisis resource page. However, the cliff noted version is this; Child and Adolescent Mental Health Services (CAMHS) are turning away Autistic children and young people from their services. This is very unethical, but that lack of ethics goes further.

You could be forgiven for not knowing what “Parity of Esteem” is. Parity of Esteem is a concept set forth by the House of Commons. The basic premise is that it requires an ethical approach that places mental health in equal priority with physical health. This has been important to the world of unschooling and EHCPs as it gives the two legal parity, allowing parent/carers to remove their child from the school environment for the best interests of their mental health.

One might think that this is a game-changing approach to the prioritisation of mental health, but unfortunately, one of the groups avoiding these particular ethical considerations is NHS mental health services themselves. CAMHS is regularly turning away Autistic people, which, in my opinion, gives the impression that Autistic young people’s mental health is of a lower priority.

Now, strictly speaking, they don’t leave you hanging every time. There are satellite services that deal with Autistic and learning disabled children. However, these services are often somewhat indifferent to psychological distress, and due to diagnostic overshadowing treat it as something that we should accept as an inevitability of Autistic experience.

Tanya Adkin and I have recently written about some of these issues. Even if CAMHS threw open their doors to Autistic service users, the infrastructure of that service is not fit for purpose. So, services that do agree to see us very often offer no meaningful support.

This highlights ethical issues over the lifetime of an Autistic person and could even create a CAMHS to prison pipeline. Allow me to explain.

Autistic young people who recieve no appropriate support for their mental health grow into Autistic adults with mental health issues. Mental health issues can result in a need to use emergency services. Here’s where it gets messed up.

There have been pushes for approaches to those who use emergency services due to mental health concerns to be approached with an intervention called “Serenity Integrated Mentoring” (SIM). Under SIM, people regularly detained under Section 136 of the mental health act can face criminal prosecution. This particular approach caused such outcries that NHS England has now distanced itself from the intervention.

This highlights, however, a move towards a world where Autistic people can face criminalisation for mental health issues no one will provide support for. I am certain that other unethical interventions will appear as we move forward. Let us not forget that Autistic people are already significantly more likely to attempt or die by suicide.

Until true legal parity is achieved between mental and physical health, marginalised groups will continue to suffer at the hands of under-resourced services. Never forget, when priorities are underestimated, disabled people are usually the first to be considered acceptable losses.

Help us start to tackle this issue by signing this petition.

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