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What is unique about my experience as an AuDHD Schizophrenic person?

Over the years, I have spoken about my experience of psychosis and autism from the perspective of its uniqueness. However, over the last few years, I have come to accept that I am also ADHD, and I feel that addressing the particular intersections at play for AuDHD people experiencing psychosis is something that needs to be done. So, what is different for me as an an AuDHD person with a diagnosis of schizophrenia?

How does my schizophrenia present?

One of the features usually seen in Schizophrenic people is flat affect or lack of emotional response. For me, though, this does not happen. Part of the reason I went 14 years without a schizophrenia diagnosis is because I present as excitable and impulsive. I say absurd things, and quite well embody the description of a “mad scientist” trope.

Despite experiencing typical traits such as paranoid delusions, voice hearing, visual hallucinations, and periods of catatonia, I don’t experience many of what would be called the “negative symptoms”.

My speech is rarely disorganised unless I am deep into psychosis, I can communicate rationally, and even when I am terrified, lonely, and hopeless, I come across as exuberant and in need of constant stimulation. I also demonstrate a lot of insight into my diagnosis because as an AuDHD person, I have spent a long time learning about it in intricate detail.

The insight problem

One of the problems that psychiatrists have had with recognising my psychosis is the aforementioned insight I have. This can be understood as having an awareness that what you are experiencing isn’t real. For me, it was a complicated affair.

I knew a lot about psychotic conditions. I knew diagnostic criteria and contemporary research. I absorbed knowledge from therapists. I knew logically that I met the criteria for a schizophrenia spectrum diagnosis. Despite this, I still didn’t believe I was ill (more on that in a moment). This meant that psychiatrists were faced by a patient who seemed to simultaneously have and not have, insight.

Am I mentally ill?

This is perhaps one of my most controversial opinions, even amongst people who know me well. I do not view myself as having a mental illness, but I do agree that I am Schizophrenic. Much in the same way one can know they are Autistic or ADHD without viewing either of them as illness.

I believe that my schizophrenia is a form of acquired neurodivergence precipitated by a life of traumatic experiences. While I do not believe I am ill, I do take medication. I view this medication in the same way that one might view ADHD meds. They are a tool that makes life more manageable.

How common is schizophrenia in neurodivergent spaces? (Further reading)

Jutla et al (2021) mention that studies have indicated a prevalence of 12% in Autistic populations, with schizophrenia spectrum conditions being three to six times more likely amongst Autistic people.

Gerhand & Saville (2021) found schizophrenia and ADHD co-occurrence rates of up to 38.75%, vastly outpacing the general population.

For more information on my experiences and these intersections, read these articles

The reason why explaining my neurodivergent experience will always be flawed

I have spoken widely about neurodivergent experiences. I have talked about my unique experience of addiction as an Autistic person, my psychosis as an AuDHD Schizophrenic. I have lamented over how society’s power structures have oppressed myself and people like me. I have spoken at length about how autism is a defining part of my core experience of reality.

One might think that on all of my years of writing, advocating, mentoring, training, and speaking, I have found somewhat of a recipe for communicating neurodivergent experiences. The truth of communicating those experiences, however, is more complex than that.

The Double Empathy Problem in Reverse

The double empathy problem has been effectively used to explain that communication differences between neurodivergent and neurotypical people essentially lay in a difference of cultural experience. We often think of this in terms of neurotypical people being unable to empathise with neurodivergent experience, but that same is true in reverse.

I can’t empathise fully with a neurotypical experience of the world.

How does this impact on the communication of neurodivergent experience

When communicating our neurodivergent experience, we have no point of reference within the neurotypical cultural world. It is a problem of solipsism, where one can only prove their own consciousness. One can only experience the world through our own mind.

Any part of that experience we communicate to others is filtered through their own subjective world. Their interpretation of our attempt to communicate our experiences is entirely dependent on a near infinite number of variables, the sum of which create a reality that may or may not be both identical or entirely different to our own.

Where one might communicate that they have a particular experience; that experience may have an entirely different meaning to another person. We are constructed by the infinite possible combinations of interactions within our environment, and therefore, we can not definitively communicate our experience of neurodivergence in an objective manner.

To put it another way, all objective truths become subjective when interpreted by human cognition.

Therefore, we must always be aware that when we communicate our neurodivergent experiences, no one other than ourselves can truly understand those experiences as felt by our own mind. We also can not explain neurodivergent experience to neurotypicals entirely accurately because we also lack that point of reference within their own reality.

This is why we need to embrace diversity of experience, even within our own neurodivergent communities. Others having a different experience to us actually increases the likelihood of a neurodivergent person successfully communicating our exact experiences.

Concluding with the infinite monkey theorem

The infinite monkey theorem states that if one gave an infinite number of monkeys, a type writer each, and allowed them to randomly hit keys for an infinite amount of time; eventually one of them would randomly type the entire collection of Shakespeare’s works.

With regards to the neurodivergent community at large, the more of us communicating our diverse experiences, the more likely that someone will eventually find a way of fully explaining neurodivergence to a neurotypical person. We need to embrace difference within individual experiences. Rather than ignore and exclude those ideas that don’t necessarily make sense to us, we need to integrate the knowledge they offer, and see if their augmentation can bridge the double empathy divide.

A story of being Autistic and getting referred to CAMHS

This article is a guest post written by Asher Jenner

Some of the content of this article may be triggering

I was a happy child until the age of 5 when I went to mainstream school. On the first day of school, I began self-harming and by the end of that week I attempted to use a ligature to strangle myself.

I knew I was different to all the other children in school who could simply obey the school rules, be quiet, sit still, concentrate on work, not shout out answers to questions and enjoy team sports and games and playtimes. I really struggled at school to do all these things, but I was very bright and wanted to learn.

When I left school each day, I immediately went into Autistic meltdown due to my masking all day and the way the staff and pupils treated me. I was verbally aggressive and threw large items such as an armchair and a large TV. I kicked and punched anything near to me. I was majorly distressed.

My parents asked 3 times for school to refer me to CAMHS for an assessment for Autism so
that they would get the right support for me at school and so they could help me properly at home. School refused to refer twice but referred the 3rd time. Someone from CAMHS came into school and observed me in 1 lesson for an hour when I was heavily masking. They asked mum and dad to fill in a questionnaire which was assessing for ADHD, when they had asked for an Autism assessment! Aged 6 CAMHS told me I had no condition at all but that I was willfully naughty and attention seeking. They told my parents that their parenting was at
fault and sent them on a standard parenting course. The person running the course agreed
after 2 sessions that the course was not suitable and was a waste of time.

My behaviour at home and school became more and more distressed. I had no friends at
school, and I had major Autistic meltdowns at school and at home. The self-harm attempts
to kill myself and the feelings of major distress just grew massively. School refused to refer me back to CAMHS and so aged 7 my parents got a private Autism diagnosis. The report from the diagnosis said I required urgent assistance from CAMHS due to my poor mental health at a tier 4 level. CAMHS refused to even see me.

Subsequently, my parents got a private PDA diagnosis, but CAMHS insisted that PDA did not exist and that I had Asperger’s. They told me it was a gift, and I should be happy to have Asperger’s. They showed no understanding whatsoever of the difficulties faced by Autistic or PDA youngsters, and they were the very organisation we trusted to understand Autism and PDA and to give appropriate support for that and mental health issues associated with it.

My mental health declined consistently from this age to the age of 15, when I was taken into an inpatient eating disorder unit as my life was in danger.

I was referred to CAMHS on many occasions during this period, such as when I was excluded from school, as I was classed as a danger to myself and others. They saw me a couple of times and offered basic breathing techniques and nothing more and discharged me! They finally agreed to give me Melatonin so that I could sleep, but they offered no support for my OCD and germ anxieties which had begun due to my severe anxiety levels.

They were asked on many occasions to give support for this as it was starting to really take over my life, but they refused. They refused for many years to give me any anxiety medication or therapeutic support, and their attitude towards PDA altered from it doesn’t exist, to it may be a thing but as it isn’t diagnosed here, we are not trained in it, and we will not be trained in it and so we cannot help you. Please be aware that we have many friends in the PDA society who are official trainers for the PDAs society.

We offered on many occasions to give
free training in PDA to CAMHS, but they refused to accept the training. On each occasion they stated that CAMHS were poorly funded and only had enough funding for 6-week standard therapies. They had no funding for neurodivergent services or alterations or extensions to their therapies. When my parents asked how we could get access to correct services or funding for me, CAMHS always replied there is none!

Emergency CAMHS were called on several occasions where I was extremely distressed, and it was nighttime. They refused to come out to me as they read my notes and said we don’t have training in PDA, and we have no drugs and no therapy to offer you. We come in a large team of people, and we know this would increase your anxiety, so we won’t come because we know it would make things worse! They said they would get core CAMHS to call us and give proper support the following day. They stated it was core CAMHS job to support people like me. Core CAMHS NEVER contacted us after any of our emergency CAMHS calls.

My germ anxiety reached the point where I would not leave my bedroom other than for
medical appointments. CAMHS offered immersion therapy in a 6-week standard course, and we took asked them to alter the therapy to be appropriate for PDA and Autism and advised them that it would take much longer than 6 weeks, but they refused and said it’s all we offer, take it or leave it. As the PDA society and the NAS had both advised that it would cause further harm and distress to have this therapy as it wasn’t in any way suitable for PDA, my daughter declined the treatment and again asked in writing for something suitable for her which would meet her needs. We received no reply.

My mum literally begged CAMHS for some help for me because my germ anxieties were so bad. They came round to the house and said they could not help at all but said I should go voluntarily into an inpatient unit for yet more standard treatment! I was traumatised by this and both myself and my parents knew it was totally unsuitable for me. We all told CAMHS this, but they just ignored us. I was left at home with no support for my mental health which worsened again to a point where I developed an eating disorder.

CAMHS only offered standard Maudsley method eating disorder support, which is a series of demands and is therefore totally inappropriate for a person with PDA (Pathological Demand Avoidance.) Again, we got advice from the PDA society and the NAS who both said do not accept this as it will worsen the mental state of your child. CAMHS insisted that was all they could offer and left me to get worse and worse. When I got to the point of refusing to consume any calories, CAMHS forced me into hospital, which further traumatised me.

In hospital, emergency CAMHS came to visit and stated it was not a classic eating disorder, I should not be in hospital as it was causing me trauma to be there, that standard eating disorder Maudsley method treatments were not suitable for me and that core Camhs should treat me in the community. Core Camhs ignored this and carried on stating that I had to have standard Maudsley method treatment from their ED team. The ED team refused to alter any treatment as they had no training or understanding of PDA and did not know how to help me. So again, I was left to get worse and worse.

CETR meetings advised I could finally get a package of support for suitable treatment in the community and admitted that CAMHS had failed me due to lack of PDA understanding and sticking to the line of you must accept standard treatment. No suitable treatment in the community was found and I was in hospital for 2 months classed as life in danger.

During that period, CAMHS and NHS England were meant to be finding a suitable place in a
unit which could meet my needs. They failed to do this, and so threatened in writing to
remove me from my parents’ ‘harmful’ care, to section me under the mental health act and
to take to me to a standard unit of their choice for standard care. Camhs psychiatrists told my mum that she was harming me by stopping me from receiving this standard care and would not listen to her when she advised that I needed care which met my needs and took account of my PDA, and that standard care would worsen my mental state and I probably would not live through it. Mum had to get legal advice from a barrister to get CAMHS and NHS England to change their views or we would take them to a judicial review, and at that
point suddenly they found a suitable unit which could give me a holistic person-centered approach and could meet my needs!

I went into Ellern Mede specialist eating disorder services unit in Rotherham and left 14 months later a totally different person. The treatment was amazing because I was listened to and understood, my needs were met, I was treated with respect, I was treated for all my mental health issues, approaches and therapies were altered appropriately, I was involved fully in my care and treatment. In other words, all the things which CAMHS had refused me for 10 years even though both myself and my parents had been asking CAMHS for it for 10 years!

I was diagnosed with general anxiety disorder among many other things at the unit and given appropriate medication for this. CAMHS had always stated that my anxiety was part of my Autism and on that basis, they refused to give me any medication for it.

The report written at the unit by the psychiatrists and psychologists stated that I was severely traumatised, and that the trauma had led to mental health issues and an eating disorder. The main causes of the trauma were stated in writing as mainstream school and CAMHS. So, to be clear, it was stated that CAMHS were the cause of my mental health issues, my trauma, and my eating disorder.

Since leaving the inpatient unit, I have had a very different life. I have finally been able to go back to school, which I missed for many years due to my mental health issues. I am taking and passing my GCSEs with level 7s and 8s. I have auditioned and am taking part in the Centre for Advanced Training at the Northern School of Contemporary dance, and I hope to study there for a degree in dance and open a fully inclusive dance school. I also present and train in Autism, PDA, mental health issues and eating disorders as well as advocating for others like myself. I present and train and advocate because I know there are thousands of other neurodivergent youngsters like me who are being failed by CAMHS and it must stop! I suffered massively for years because of them, and I almost died.

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Asher’s Bio

Since leaving the inpatient unit I have been determined to spread awareness and understanding so that no one else suffers as I did.

I have presented and trained both face to face and online in PDA, Autism, mental health issues and eating disorders.

I have worked for the PDA society, the NAS, Autism Accreditation, NHS England, the PDA Space, and the PDA summit 2023, various Autism charities, parent carer forums and Sencos across many areas etc… I have done a podcast with Anna Kennedy OBE, and I have been involved in getting a book called the Autistic Teens Avoidant Eating Workbook by Dr Elizabeth Shea published. This is a self-help workbook for Autistic Teens with Arfid.

I have trained in PDA and eating disorders in combination in Ellern Mede inpatient units, and they have advised me that my training is helping them to recognise people who have PDA but may be undiagnosed, and to give them appropriate PDA friendly supports. My work has been sent all over the world at the request of individuals including parents and those with eating disorders and PDA as well as some professionals.

I am hoping to be involved in having input to the Oliver McGowan mandatory training for inpatient units, so that PDA will be added to the training. I have just recently become a trainer for the PDA society, and I hope to be able to reach more professionals, parents and other neurodivergent people to bring about understanding and support for people like myself.

I have received a Radio Humberside Making a Difference Highly commended award in 2022 and I have been nominated for an Anna Kennedy Autism Hero award this year 2023.

I have also been able to return to my school and my studies and I have passed 3 GCSEs with good grades. I have 2 more to finish this year. I am now dancing at the Northern School of Contemporary dance, and I hope to go on to do a degree in dance there.

My ultimate goals are to run my own fully inclusive dance school for all, and to carry on my advocacy work in some guise. I’m currently voluntarily presenting and training, but eventually my plan would be to earn a living from this as well as my dancing career.

How CAMHS put my life at risk and then discharged me

Being an Autistic teenager is hard. My life was no exception to this rule. After years of trauma and loss, I was at breaking point. Then, one day, my mother came to hurry me up with getting ready for school. What she found was not the resilient and hardworking son she was always so proud of. No, what she found was the husk of her child. Unable to speak or do anything but rock back and forth while sobbing. This is a story about CAMHS.

I was 15 years old, and for the next three months, I would barely be able to leave the house. Let alone attend school.

It transpired that the person who would be the most helpful was a paediatric doctor. I wasn’t seeing him for my mental health. I was seeing him for bowel and stomach related issues. He became deeply concerned with my suicidal ideation and stress levels, and wrote to both my school and my GP to insist I have a referral to Child and Adolescent Mental Health Services (CAMHS) made.

The truth is that at 15 years old, I didn’t see any point to my life. It felt as though suffering were all I was destined for, and I would be better off leaving this world, taking with me the burdensome weight of my pain. I waited only a few weeks for an appointment to be made with a CAMHS psychiatrist.

I have always communicated best through written word and art. So, naturally, I took with me to the appointment writing and drawings that contained some of the darkest machinations of my suffering. If there was a chance for help, I wanted them to see how deep my pain ran. I wanted them to know the truth so they could best support me.

The psychiatrist was not interested. She did not want to see me writing or drawing. She didn’t care for the vulnerability I was laying before her in order to communicate my needs. I felt invalidated and small. Powerless. In her words, I was euthymic (meaning of good mood) and a school refused. She acknowledged that I was depressed but made it clear that if I did not want to take medication, I would be discharged.

The appointment lasted five minutes. I was discharged and labelled a school refused. My mother would go on to be threatened with legal action and fines. I went on to become a young adult, heavily addicted to drugs and alcohol, Schizophrenic, and deeply suicidal. I would not have my formal identification of autism until 6 months after I got sober.

CAMHS showed me then, even in 2005, that they didn’t care about children like me. At the time I thought I was just unlucky, but my time in the Autistic community has show me I am one of tens of thousands of Autistic children who have been failed by this service at some of the most crucial times in our lives.

That is why I am part of the ongoing campaign to hold CAMHS to account. Lives have been lost, and I am lucky mine wasn’t one of them. How can we make a better future for our children when services like CAMHS allow them to grow into adults for whom suffering is an everyday part of their lives?

I will not allow this to continue, and neither should you. We owe this to our children, and all children yet to come.

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Autistic people and the cultural suppression of Autism

Autistic people have long talked of a world that is not designed for them. There are countless tales of the way that society is set up to be actively hostile to anyone who can not meet the neuronormative standards of their surrounding culture. This has led to a growth in online spaces of a separate culture which is broadly recognised as Autistic culture. These cultural spaces offer a vital reprieve from the hostility of the world, and yet we still find ourselves being penalised for existing as ourselves.

A colonial model of the cultural suppression of Autistic people

When I consider the cultural differences between Autistic and neurotypical people, I imagine it like a linguistic difference. Autistic and neurotypical people speak a different language. When we enter each other’s spaces we are perceived more as the obnoxious tourist than the valuable diversity of a given society. The issue is that through the proliferation of colonial ideals and subsequent neuronormativity, neurotypicals have invaded many of the spaces we may not have historically shared with them. Once they have entered our space, they place the burden to assimilate into their culture on us, rather than allowing us to respect our own cultural practices. Autistic culture is effectively colonised by neurotypical society.

Cultural suppression through autistiphobia and ableism

Ableism and autistiphobia have been growing exponentially alongside the rise of capitalism and neoliberalism. Autistic people may not have always been a recognised cultural group, but we have been recognised for a long time as “the other” that burdens society with its presence. Much of the rhetoric surrounding Autistic people can be attribute to autistiphobia, or to go further, autistimisia. Difference is detested in this world; and there is a special place in a hateful world for those of us whose difference precludes us from engaging in neuronormativity.

“No, there is no renaissance for ableism. It’s here, and it’s always been here.”

Gray-Hammond (2021)

Ableism and autistiphobia/autistimisia are not just the outcome of a society that does not understand. They are a weapon of those whose power relies on our cultural suppression. If those in power can suppress or even eliminate our culture they can then ignore our rights. The quickest way to do this is through the systematic dehumanisation of us. Culture is a uniquely human experience, and if Autistic people are disallowed from having a culture, part of our humanity can be denied.

The double empathy problem and cultural suppression of Autistic people

The double empathy problem explains the difficulty to empathise with people who have different cultural and life experiences us. For Autistic people, this represents a large portion of the world. The issue is that due to power imbalances between Autistic people and neurotypical society, we experience systemic oppression through the suppression of our culture. This leads to increased minority stress and the belief that Autistic people should meet neuronormative standards, rather than a give and take relationship where we meet somewhere in the middle.

Effective communication and co-existence is undermined by the forced assimilation of Autistic people into these neuronormative standards. While we may learn to operate within neurotypical culture, we have somewhat of a cultural accent that still declares us as different from the majority. To consider it another way, we are unable to win, no matter what we do.

Neurocosmopolitanism as the pinnacle of cultural thriving

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Such neurocultures as the Autistic community need a level playing field. While society continues to privilege one group over another, we will continue to see cultural suppression. We need to work towards building a world within which our culture has a place, rather than it’s current counter-cultural existence. We need our cultural spaces to be respected and protected rather than invaded and restructured into something that is antithetical to Autistic experience. We have a right to our existence, and it is time that the world caught up with that fact.

It’s OCD Awareness Week and CAMHS are still failing Autistic young people

Obsessive Compulsive Disorder (OCD) is one of the most misunderstood mental health diagnoses that exists. Misrepresentation in the media and everyday vernacular means that OCD has come to be understood as something that requires a meticulous attention to detail and love of order. The truth is far more upsetting for those who are diagnosed with this condition, and Autistic children and young people represent a significant portion of this population. despite this Child and Adolescent Mental Health Services (CAMHS) are failing to support Autistic children and young people with what can be a very debilitating experience.

How common is OCD amongst Autistic people?

“Autism is not a mental health problem, but as many as 7 out of 10 people with autism also have a mental health problem such as anxiety, depression or obsessive compulsive disorder (OCD).”

Hampshire CAMHS

Accordine to Meier et al (2015) people diagnosed Autistic were twice as likely to be additionally diagnosed with OCD, and those diagnosed OCD were four times as likely to later be diagnosed Autistic. Martin et al (2020) found that, of young people ages 4-17 years, 25% of those diagnosed OCD were also Autistic, with a total of 5% of Autistic young people being diagnosed with OCD. In contrast to this is the general population, of whom around 1.5% are Autistic (Baron-Cohen et al, 2018) and 3.5% are OCD (Fineberg et al, 2013). It is clear that OCD and autism have an complex relationship that warrants attention.

If OCD is so common for Autistic young people, how many are being treated by CAMHS?

According to Devon NHS trust 1 in 10 CAMHS patients are Autistic. I have spoken before about how alarming this statistic is (see here). To really capture the fallout of these failures La Buissoniere Ariza et al (2021) found that 13% of parents reported suicidal ideation in their child when autism and OCD co-occur. Please don’t forget that Autistic children in general are twenty eight times more likely to think about or attempt suicide (Royal College of Psychiatrists). OCD is not just a significant issue for Autistic young people, it is threatening their lives. Still, CAMHS are refusing to support these Autistic children.

What are the barriers to CAMHS supporting Autistic young people with OCD?

In my opinion, the biggest issue is professional competence. Myself and Tanya Adkin have written previously about her concept of neurodivergence competency. Despite Autistic children and young people representing a huge portion of the populations that need access to CAMHS, professionals do not have the skills to support them safely and effectively. This presents huge barriers to access to CAMHS because they are either turned away or given treatment that can have life threatening consequences.

If we wish to reduce the rates of suffering amognst Autistic and OCD young people, we need to fight for a CAMHS that not only lets us through the door, but also upskills it’s professionals, and creates an environment within which Autistic and neurodivergent professionals can work. There is more to be said about the hostile environment that has been created for Autistic CAMHS professionals.

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Autism and Paranoia: Autistic pattern recognition when it runs away

Autism is not something that is generally associated with paranoia, but as you will see from previous writing on the topic, it is an issue that needs to be given consideration. Research as far back as 2011 (King & Lord, 2011) has indicated that there is a growing belief that autism and schizophrenia may be part of a single spectrum. As an Autistic and Schizophrenic person, I am inclined to believe they might be, the relationship between the two feels complex and nuanced, so it should come as no surprise that paranoia is a topic that needs attention.

Is there a difference between Autistic paranoia and Schizophrenia paranoia?

Research has indicated that paranoia in Autistic people occurs at a similar rate to Schizophrenic people, but Autistic people experience it more on the basis of social cynicism (Pinkham et al, 2012). Social cynicism is a broad category, but to my mind it has to do with our pattern recognition skills. Autistic people grow up in a world that is inherently traumatic, and learn to predict outcomes in order to defend the small amount of wellbeing afforded to them.

This elevated sensitivity in pattern spotting can at times get out of hand. When we are in meerkat mode or atypical burnout, we may start seeing data points that would usually be considered anomalous background noise as something meaningful and connected to real world occurrences. This associative thinking can create feelings of paranoia and persecution, which in turn adds to our dysregulation, making it more likely that we will form these abstract connections. When we combine this with a cynical attitude towards our society, it is easy to see where the problem begins.

How does this differ to people who are Autistic and Schizophrenic?

In my own experience, my paranoia is considerably more bizarre than the average burnt out Autistic person. I experience delusions that are often abjectly impossible as opposed to many Autistic people who experience paranoia that has a more tangible and realistic pattern to it. Mazza et al (2022) found that Schizophrenic people struggled to understand social scenarios, as opposed to Autistic people who were more likely to misunderstand people’s intentions in social situations. We can consider that the additive effect of this is an increased susceptibility to gaslighting, which as a traumatic occurrence in itself may well feed into our paranoia. When you are Autistic and Schizophrenic, the people around you have a great deal of influence on your wellbeing. Paranoia can be intimately connected to the views of the people in your life.

Autism, paranoia, and co-regulation

Autistic people experiencing paranoia often (anecdotally) report decreased interoceptive sensitivity and struggle to regulate their own emotions. This is where co-regulation with a safe person is absolutely vital to recovery. When we are unable to create feelings of safety on our own, it becomes necessary for another person to share their calm and rationality with us. This can be particularly problematic for households where dysregulation is the norm, heightened emotions of those around us can elevate feelings of paranoia and create self-fulfilling prophecies.

Social factors in Autistic paranoia

Minority stress plays a significant role in the psychological wellbeing of Autistic people (Botha & Frost, 2020). When considering minority stress, we have to consider the cumulative stressors that come together to create minority stress. Howlin (2013) discusses how Autistic people have less positive educational outcomes, as well as being poorly served by health and social care settings. We also have to consider the class divide, intersection with race, gender, and sexuality, and social isolation. We are a population who face very negative socioeconomic outcomes. This can create strong feelings of distrust in the system and a sense of persecution by a society that dictates our assimilation regardless of whether it is the right thing for us.

This is just a brief look into the world of autism and paranoia, but I believe it highlights some key issues that deserve further research and support. In the meantime, the best thing we can do for our Autistic loved ones is to create a safe and accepting space, free from the demands and alarming patterns of our abusive society. For the issue to be solved, society needs to be changed at it’s foundations.

How do CAMHS make parents and carers responsible for their child’s struggles?

Child and Adolescent Mental Health Services (CAMHS) in the UK exist to help children and young people who are experiencing mental health problems. Despite this, Autistic children and young people are finding that such services either refuse or fail to deliver meaningful intervention, even when they are in the depths of mental health crisis. One of the ways that they do this is through positioning their parents and carers as being at fault for the young person’s mental health problem.

What is institutional parent/carer blame and why is it relevant to Autistic people and their families?

“Disabled children and their families are one of the most severely disadvantaged
groups in the UK. They are ‘significantly more likely to live under conditions
that have been shown to impede development, educational attainment and
adjustment to and increase the risk of poor health, additional impairment and
social exclusion’.

Clements & Aiello (2021)

Institutionalised Parent/Carer Blame is the practice by societies institutions of taking an adversarial approach to supporting children and young people. In the context of social care, this often looks like issuing safeguarding proceedings when a needs assessment is required. Autistic and disabled families run foul of this far too often (as mentioned in the quoted report). Sadly, CAMHS also engage in this kind of practice.

What is the most common form of parent blame in CAMHS?

The National Institute for Health and Care Excellence (NICE) recommend parenting courses as “evidence-based interventions”. In particular, these courses are often aimed at parents of Autistic children. Unfortunately, not only are these courses often unhelpful, they position parents who are likely to be disabled themselves as the root of their child’s struggle. Failure to engage with the tools of this parent/carer blame can lead to social care involvement and safeguarding reports. It is the weaponisation of the system and defensive practice.

It is failing Autistic children.

Why do CAMHS engage in institutionalised parent/carer blame?

In my opinion, a significant factor in the practice of parent/carer blame is the need to gatekeep resources, coupled with a failure to understand Autistic children and their families within their unique context. In social care, this can be seen by the absence of clear guidance on how to approach disabled children and their families in the Working Together Document (2018). This sets the stage for countless inappropriate safeguarding referrals and systemic hostility.

Not only are CAMHS (self-professed) to not have the skills or knowledge to work with Autistic people, they are losing important resources year on year.

“…government statistics show a 25% increase in the number of young people with a mental health need – from 61,830 in 2019 to 77,390 last year.”

The Guardian (2022)

Despite the post-COVID increase in mental health problems amongst young people, funding and resources for CAMHS have not changed in a positive way. This has led to a shortage of skilled staff and a culture of defensive practice. Autistic young people, like many disabled people, are treated as an acceptable loss.

What is the result of parent/carer blame for Autistic families?

“…one in five GPs (18%) knows of a patient who has tried to, or taken, their own life after being refused care – often on the justification that their condition was not ‘severe’ enough.”

Disability Rights UK (2022)

Not only are Autistic young people losing their lives due to CAMHS failures, there is an ever present risk of family breakdown. Families who can not get the correct support risk harm to the entire family unit, not just the Autistic young person in crisis. The victims of CAMHS failures are a far wider group. We hurt when our loved ones hurt. Yet, CAMHS are still willing to contribute to the criminalisation of parents whose only crime was to ask for help.

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Autistic people are not framed well in the media: Why?

When we think about autism in the Autistic community, an infinite number of moving points coalesce to create countless individuals with a shared experience. One might argue that to be Autistic is to meet a certain set of limited criteria, but many of us understand that autism is more than a simple diagnosis. You can then understand our frustration with how our existence is framed in the media. From news outlets to Hollywood movies, our lives are interpreted in less than favourable terms time and time again.

Understanding the Autistic performance

Titchkovsky (2007) discusses disability as something we do. In this context, we not only are disabled; we do disability. Being Autistic can be viewed in much the same way. We do autism, we perform autistically. In my book A Treatise on Chaos I explore the Self as a moving a fluid entity. To belong to the Autistic community is to embody the Self in an Autistic way.

This means that to perform an Autistic embodiment, we are not constrained by another’s idea of what being Autistic is. We define autism as much as autism defines us. There is no wrong or right way to be Autistic.

How does the media undermine the Autistic performance?

“They finally knew what was wrong with their shy, diffident son who would one day shoot and kill 20 children and six adults…”

McCoy (2014)

The above quote is from a Washington Post article linking autism to mass murder. I wish I could say such stories are rare, but sadly the media is full of them. It seems that every time a mass atrocity is committed, there is a rush to pin the blame on neurodevelopmental differences or mental health issues.

This sensationalist and reductive approach to Autistic people strips us of our humanity. It not only others us, it creates a level of fear and stigma surrounding our existence. Media reporting like this makes us a potential threat to be contained by society rather than free agents with the potential to contribute to our world.

Why does the media portray Autistic people in this way?

The world fears inhuman acts. When atrocities happen, it is easy to look for a way to distance ourselves from them. One need never fear becoming a monster if what we see as monstrous is fundamentally different to us. Historically, autism has been a diagnosis for the improper human; thus, if Autistic people are the ones committing monstrous acts, then the every day person can rest in the knowledge that they will never become one.

There is more to it, though. Autistic, as an identifier, has gone through a sort of pejoration as our community fights for equitable rights. As we become more vocal, those with privilege slowly guide the consensus on the meaning of autism to become less human, less than human, inhuman. If we can be made into monsters, it is less likely that our rights will become undeniable.

How do Autistic people take back the meaning of autism?

Autistic people must seek to subvert pejorative ideas by demonstrating their undeniably human lives. We must work to restructure the foundations of our society so that the every day Autistic person can be openly Autistic in defiance of dehumanisation of our existence. We must show those fluid and moving parts of ourselves in a way that annunciates our inability to be contained by stigma and hatred.

More than anything, we must perform our Autistic performance in such a way that we reverse the pejoration of our identity.

Autism and the double empathy problem: The barriers to effective support

Autism is spoken of in various ways by wider society, however there exists a pervasive theme to most discussion on this topic. Society treats autism as though it were a separate entity inhabiting the bodymind of an otherwise neurotypical person. It is approached as something that obscures the true Self rather than the defining factor in our human experience that it is. Autistic people are the only part of autism that actually exists, so why are they denied the opportunity to communicate their experiences and lead the way on knowledge creation about autism? How can we use the double empathy problem to understand our exclusion from knowledge creation?

What is the double empathy problem and what does it mean for Autistic people?

The double empathy problem was first spoken of by Damian Milton in 2012. It positions Autistic people as a minority cultural group. The essential basis of the double empathy problem can be understood as thus;

“Milton’s theory of ‘double empathy’ proposes that Autistic people do not lack empathy.

Milton argues that Autistic people experience the world and express emotions differently to non-autistic people. We communicate, experience and display emotions, interact with others, form relationships, and sense the world around us, differently to non-autistics. That doesn’t mean that we don’t have emotions or feel empathy.

But it makes it difficult for non-autistic people to understand and to empathise with us. And us with them.”

Reframing Autism (2020)

This then allows us to consider the cultural differences between Autistic populations and non-Autistic populations. Much as a white person may fail to understand the lived experience of racism, non-Autistic people fail to understand Autistic experience and vice versa. This absence of context presents an issue for the Autistic person when trying to communicate within power structures that favour non-Autistic ways of embodiment and existence. We are labelled as being in deficit because of a pervasive neuronormativity within non-Autistic populations.

How does neuronormativity unbalance power dynamics for Autistic people?

Neuronormativity draws it’s position largely from western colonialism (although cultural standards of normativity do differ from group to group) and the belief that one must assimilate into the majority population, becoming a “productive citizen” within ones socioeconomic system. It creates a strangely reductive notion of one either being helpful or a burden. The existence of neuronormativity can be view as logically fallacious in it’s origins; specifically, it is situated within a fallacy known as “argumentum ad populum”. This means that the argument to support neuronormativity uses it’s acceptance by the majority as it’s evidence base.

This is of significant concern for minority groups. Normative values are often used to suggest that one’s humanity is based within a contained and isolated set of values and styles of embodiment. If one need only make an appeal to the masses for something to be true, then almost any dissent from minority groups becomes “inaccurate” or “without evidence”. Thus, the power structures of society favour a predominant neurocognitive style over anything that diverges from it.

How does the double empathy problem obstruct Autistic people from communicating their experiences?

The power imbalances that exist have created a world within which Autistic people can not be correct about their own experience. If one asserts that natural Autistic communication is valid, then the majority can simply view that knowledge as inaccurate by virtue of it coming from a minority group rather than the majority. The double empathy problem means that not only does neuronormativity exist, but the dominant group can’t ever fully empathise with how harmful it is.

Not only can dominant groups not understand our experience, neuronormativity tells them that neurocognitive styles outside of their understanding are something that need to be corrected. This allows for the mass administration of harmful interventions such as ABA, PBS, and quack cures like MMS. We are effectively dehumanised by the majorities refusal to step outside the comfort zone of their own worldview, leading to potentially life threatening consequences.

What does the double empathy problem mean for Autistic people in practice?

This gulf between cultural experiences couples with neuronormative attitudes allows professionals in various multi-disciplinary fields to ignore our voices when we advocate for ourselves. In practice, professionals will try to enforce their own opinion of what is needed by the Autistic person rather than allow the Autistic person to speak their own truth. It is the effective oppression of Autistic people contributing to the minority stress that we experience as a minority cultural group.

  • Healthcare professionals don’t listen to us
  • Social care professionals don’t listen to us
  • Education professionals don’t listen to us

It is a list that I could add to in perpetuity. We are talking about weaponised testimonial injustice that keeps us in a disadvantaged position.

What can Autistic people do to combat the fallout of the double empathy problem and neuronormativity?

At this point I might direct your attention back towards the aforementioned minority stress that we experience. This can be understood as the cumulative effect of multiple sources of hostility and oppression with out society. The effects of the double empathy problem and neuronormativity have long allowed this minority stress to run wild. Interestingly, Botha (2020) found that community-connectedness acts as a buffer against this.

“The minority stress model is a social research and public health model designed to help us better understand the lived experiences of people of oppressed communities. The model posits that within the social structure of a particular culture or society, certain (oppressed) groups experience greater incidents of minority stress (based on race, sexuality, gender, disability, etc.) in the form of prejudice and discrimination. As a result of those experiences, members of oppressed communities experience greater negative health outcomes than majority group communities. This leads to large health disparities.”

Caraballo (2019)

Botha (2020) found in their doctoral research that where Autistic people were connected with Autistic communities, there was an improvement in wellbeing in nearly every domain explored. It stands to reason then that perhaps the increased confidence in self-advocacy that comes from connection with other Autistic people allows us to mitigate the effects of minority stress. For this reason I strongly believe that one of the most effective things that can be done for newly discovered Autistic people is signposting to their community.

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