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Autism and psychosis: The elephant in the room

I am Autistic and ADHD, some might affectionately refer to me as AuDHD. However, to think that these two diagnostic categories tell the whole story of my neurodivergence is to miss out on a significant part of my experience of our shared reality.

The truth is, I don’t always experience our shared reality. My name is David, and I’m Schizophrenic.

Psychosis rarely makes it into the discussions of “mental health awareness”. In fact, most people view those like me as dangerous and incapable of taking part in the world. Many assume that people like me spend their lives in psychiatric facilities, taking part in unstimulating arts and crafts and therapy sessions. Some may think of us as criminally insane, restrained in a room, while having medication forcibly given to us.

While not totally inaccurate, I have spent time as an inpatient, and a lot of us are regular people with regular lives.

You might be asking yourself where my being Autistic and ADHD fits into this all. In this study they found that nearly 35% of formally identified Autistic people showed indications of psychosis, with up to 60% of Schizophrenic people showing Autistic traits. Statistics like this indicate that psychosis and Schizophrenia are an important point of discussion that is in no way being discussed.

To an extent, I understand why. The neurodiversity movement has done a lot of work to position itself away from things traditionally viewed as “mental illness”. It does, however, demonstrate the ableism and saneism that is present in the Autslistic community.

The fact that I experience madness is a part of my neurodivergence. Schizophrenia is neurodivergence, just like autism and ADHD. Like ADHD, many of us take medication to help us perform to the demands of neuronormative society. Just because psychosis and schizophrenia are viewed as mental illness, does not mean that it is mental illness.

The Autistic and otherwise neurodivergent community could do a lot to support people like me. By embracing us as neurokin rather than treating us as an undiscussed intersection, we become empowered to break free of the chains of the pathology paradigm. Is that not what we all wish for?

I know that out there, many people like me keep themselves contained and quiet. We need to dismantle the stigma and saneism in our community so that people can be openly psychotic without fear of being rejected, criminalised, or even killed. More often than not, the biggest risk we present is to ourselves.

I love the Autistic community. The things I have learned during my time among you all reach further than merely affirming neurodiversity. I have come to understand that things such as atypical burnout are inextricably linked to the development of my psychotic experiences. This is the good that open communication can affect those of us for whom reality is malleable.

The time has come for people to stand true to who they are. It’s time for psychotic people to open up the conversation and support each other into a liberated future. All I ask is that my Autistic comrades give us the space and compassion to do so.

To read more about my experiences of madness and schizophrenia, please consider purchasing a subscription to my substack

Creating Autistic Suffering: Clustered injustice compounds minority stress in Autistic experiences

This article was co-authored between David Gray-Hammond and Tanya Adkin

Trigger Warning: Injustice, mental health, systemic oppression, minority stress, fabricated and induced illness, stigma.

“The state creates the rules and dictates the processes to be followed: processes that fragment, silo, and compartmentalise, and in doing so, generate the complexity that is the root cause of clustered injustice.”

Clements, L. (2020)

As disabled people not only do we have to consider how our disability affects us inday to day life, but we also have to consider the amount of ‘life admin’ that we encounter daily. Policies, procedures, and legal processes are in place to supposedly serve us, but what they actually serve to do is make an awful lot of these aids and services inaccessible.

We have the Equality Act (2010) that serves the purpose of making it unlawful to discriminate against anybody that has a “protected characteristic”, including disability. At a glance this sounds amazing, and very forward thinking, but does anyone actually know what is involved in bringing a disability discrimination claim against an institution or person?

It’s a resource heavy, and convoluted process. It may even involve solicitors.

Do disabled people have the spoons, resources, or money to access the laws that are put in place to protect us? How can we expect the average disabled person to navigate these systems, and bear the financial and psychological burden.

If you have a disabled child, you have the Education, Health and Care Plan (EHCP) process. Which in its basic form is supposed to involve a holistic assessment of a child to identify their needs and silo them into four broad areas of special educational needs.

Sounds simple, right?

For any parent who has been through this deeply traumatic process (because that’s what it is), it does not do ‘what it says on the tin’. It is again a resource heavy and convoluted legal process that may even put you on the radar of social care, and a victim of institutionlised parent carer blame (IPCB) (Clements. L, and Aiello, L. 2021).

These are just two examples of the many processes that barricade Autistic people and their families out of equitable and fair treatment. They never come one at a time…

So, what is clustered injustice, and why do we need to know about it?

Cluster definition

“a group of similar things that are close together, sometimes surrounding something.”

Cambridge Dictionary

Injustice definition

“the condition of being unfair and lacking justice, or an action that is unfair.”

Cambridge Dictionary

Given these definitions, clustered injustice, put simply, refers to legal problems that are encountered by disadvantaged people, whereby the issues are often not singular but ‘clustered’.

While it refers to legal proceedings, it can also be experienced by Autistic people when navigating law, policy, process, and procedure, etc.

Hypothetical case study

Fabricated and Induced Illness (FII) guidance can lead to clustered injustice (Gray-Hammond, D and Adkin, A. 2022). For example, a mother may be seen to be making “frequent and vexatious complaints” (Royal College of Paedatrics and Child Health, 2021) while trying to have their child formally recognised as Autistic, and subsequently access appropriate support. In this case, the mother has greater knowledge of their child than the professionals, but is subjected to IPCB by being accused of FII.

The diagnostic process for a child is a multi-disciplinary approach that spans education, health and social care. Depending on the age of the child, mental health services may also be involved. It’s done this way so that professionals are able to gain a holistic view of the child, and accurately assess them. However, we know that services are woefully underfunded and basic knowledge about Autistic experience is sparse, stereotypical, and loaded with pathologising rhetoric (Dillenburger et al, 2016).

Lets say the professionals get it wrong, lets say the child has an ‘atypical’ presentation (which basically means the assessing professionals do not have sufficient knowledge of Autistic experience in order to be assessing the child). Consider that you have to point this out in the form of a complaint. You are potentially complaining to, health, social care, and education, maybe even different departments in each of those areas. This means that in order for a parent to have their complaint holistically considered they have to complain to separate departments, following separate processes which could easily be considered vexatious and frequent, when in fact there is no other holistic solution available to them.

This is clustered injustice.

Autistic people have similar experiences with accessing disability benefits, healthcare, the justice system, and many more areas of life. Institutions and policy are designed in such a way that the holistic nature of the barriers we face are fragmented, siloed, compartmentalised, and ultimately minimised. At worst it is then used as a tool to further exacerbate an already existing power imbalance. Clustered injustice is a weapon, used by those in power against disadvantaged groups.

What is minority stress and how does it relate to clustered injustice?

Minority stress refers to the unique stressors that are experienced by minority groups as a result of their segregation from society at large by stigmatisation and discrimination.

“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events. Social structure facilitates this process through acts of discrimination and social exclusion, which are added stress burdens that socially advantaged groups are not equally exposed to.”

Botha, M., & Frost, D. M. (2020)

It is simple then to see that there is a direct and causative relationship between clustered injustice and minority stress.

What can be done to mitigate this?

Unfortunately, not a lot at this time. However, community connectedness does relieve the effects of minority stress in Autistic people (Botha, M. 2020). In short, the collaborative problem solving that can arise from finding your community and sharing the psychological burden with those that understand, and sharing resources and the experience of those that have come before you is invaluable.

As it turns out, we’re not anti-social loners after all!

If you see this or experience it, call it what it is. The more people that have a name for it, and actively speak out against it, the more awareness there will be of this particular form of injustice. This oppressive system relies on us not being able to articulate or describe the barriers that we face, the onus is put on us as Autistic people, to identify our needs and advocate for them. So now you have one more tool in your self-advocacy toolbox.

Knowledge is power.

Bibliography

Botha, M. (2020) Autistic community connectedness as a buffer against the effects of minority stress. Diss. University of Surrey.

Botha, M., and Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.

Clements, L. (2020). Clustered Injustice and the Level Green

Clements. L., & Aiello.,L (2021). Institutionalising parent carer blame. https://cerebra.org.uk/wp-content/uploads/2021/07/Final-Parent-Blame-Report-20-July-21-03.pdf

Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.

Equality Act (2010).

Gray-Hammond, D and Adkin, T (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. emergentdivergence.com

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/cluster

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/injustice

Autistically medicated: the journey to find what works

My name is David, and I have to take a ton of medication to stay healthy.

It’s taken years to find the balance, and recently, one of the main medications has had to be changed.

Currently I am taking aripiprazole, paliperidone, mirtazapine, trazodone, promethazine and propranolol for my mental health (although the paliperidone will soon be discontinued, and the aripiprazole dose increased).

I also take procyclidine and rosuvastatin for the side effects of my medications.

I’m autistic and have complex mental health conditions. I’m stable, but it’s taken a long journey through various medications and talking therapies to get here. My autistic brain is sensitive to changes, so I have endured a lot of side effects.

Why did I endure it?

I wanted to get better.

I realised that if I wanted to feel better and be better, I had to listen to what the experts were telling me. There has been a lot of trial and error, but I am now in a place where, even though difficult things are still happening due to outside forces, I am happy.

I have walked away from people who shame me for taking meds. I don’t need them in my life. For some of us, medication is a prerequisite of life. Finding that balance however, can be a nightmare.

My autistic brain doesn’t react typically to anything, and there is little to no research on many of these medications in autistic people. For this reason, it’s taken me over a decade to get to where I am.

My psychiatrist deserves a bloody Nobel prize. He has worked in the dark to make me well again. What we have achieved together is nothing short of a miracle.

My advice for anyone struggling with mental health is to work with your doctor. Use their expertise. Discuss how it makes you feel. It’s tricky, but you have to give a certain level of trust.

Medication is a lifeline that everyone should have access to, and I will never allow people to be shamed for it on my platforms.

We need to work together to destroy the stigma surrounding medication.

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