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Oct 19 2023
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.

David Gray-Hammond 0 Comments
Oct 12 2023
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.

Sign the petition here

Sign the open letter here

Check out Autistic and Living the Dream and Autistic Realms for more on autism and OCD!

If you enjoy these articles, please consider purchasing one of David’s books! Click here for more information.

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David Gray-Hammond 0 Comments
Oct 10 2023
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.

David Gray-Hammond 0 Comments
Oct 6 2023
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.

Click here to see the petition against CAMHS

Click here to sign the open letter to the UK health secretary.

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David Gray-Hammond 0 Comments
Sep 30 2023
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.

David Gray-Hammond 0 Comments
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