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Marginalised groups should not be responsible for ending stigma

When we think of stigma, we often think of awareness campaigns and personal disclosure of our struggles. On the face of it, these appear to be helpful in stigma reduction. However, as with all things like this, it is not nearly as simple as that. Autism has been the focus of many stigma reduction campaigns, but people are rarely Autistic as a standalone identity, and there are (more often than not) multiple marginalities within Autistic lives.

Autism is not the only sources of stigma in neurodivergent lives

When considering my own experience, one identity of mine that is particularly relevant to this conversation is Schizophrenia. Psychotic disorders have been positioned as the most “dangerous” of mental health concerns. People assume a poor prognosis with a high potential for violence.

Schizophrenia, in my opinion, is a good measure of saneism and ableism in society. Despite Schizophrenic people only having a modestly increased risk of violence, the media fails to report responsibly. Nuances such as the socioeconomic factors of violence in this population are rarely accounted for. In the same way, much of the stigma surrounding neurodivergence and other marginalised identities is driven by poor understanding of colonial oppression and sloppy reporting by journalists. When considering the sources of stigma in a person’s life, we have to consider intersectionality and minority stress.

Individualism and the stigma surrounding neurodivergence

When considering the role of individualism in the perpetuation of stigma surrounding neurodivergence, we have to first understand the role of psychiatry. The field of psychiatric medicine centres most neurodivergence ad “mental illness”. It places the issue within the body of an individual and requires them to “recover”. This individualisation is responsible not just for the coercion that occurs within the psychiatric profession. It is also responsible for the use of quack cures such as MMS and chelation “therapy” that do a great deal of harm.

The ableism and sanism that surround neurodivergence means that we are often coerced into harmful “treatment” or abused by those closest to us. We are dehumanised by stigma and forced to endure a world that views our existence as an abberation rather than a natural part of human diversity.

Why is it wrong to expect victims of stigma to tackle their own stigma?

When we consider marginalised groups, we have to consider that, for most of us, dismantling stigma is usually an expectation of free labour. Far too often, we are expected to expose the most vulnerable parts of ourselves to a world that, in most cases, will respond with vitriol. Raising awareness through vulnerability can be life threatening for many of us.

We also have to note the effect of privilege in stigma reduction efforts. White people such as myself are better able to expose the less acce0ted parts of themselves. If a BIPOC Autistic or Schizophrenic (considering my own neurodivergence) person were to lay bare their most hidden parts, their life could be endangered. For me, the stigma I face is dangerous, but not nearly as life-threatening as that of my further marginalised neurokin.

Conclusion

Marginalised people are left to raise awareness in a world that does not want to listen. It should not be us doing the work to dismantle stigma. Instead, those perpetuating it should be practising enough introspection to realise the conditioning that our neoliberalism world has used to dehumanised people such as myself. The expectation that we will do the work is fundamentally flawed in a world that does not care enough to practice insight.

Until such a time that wider society is ready and willing to see its own role in our oppression and marginalisation, we will continue to be mistreated. It should not be our job to tackle structural oppression while also trying to survive it. That is what most of us are pouring our energy into; survival.

Why is the Autistic community so important for Autistic people?

Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.

In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?

Community and wellbeing

Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.

Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.

Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.

Minority Stress

Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.

What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.

The Autistic Community

The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.

I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.

This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.

Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.

Our lives depend on it.

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.

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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