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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.

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

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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

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David Gray-Hammond 0 Comments
Sep 25 2023
CAMHS Mistreatment of Autistic young people: A case study

I have explored (extensively) the issues with Child and Adolescent Mental Health Services (CAMHS) in England. The particular focus of my writing has been their mistreatment of Autistic children and young people. Something I haven’t touched on is there well documented mishandling of processes around the assessment and diagnosis of autism itself. This has been a point of contention for some time now between Autistic people and professionals. The following case study highlights mistake that in my opinion are all too common. The trust in question is Sussex Partnership NHS Foundation Trust (SPFT).

The background of the Autistic young person

“Person E’s GP referred them to the Trust. The Trust refused to accept the referral, as Person E did not meet its criteria.

Six months later, Person E’s GP made a second referral. The Trust accepted this referral. Complainant G then reported that Person E was unable to leave the house and would not communicate. The Trust agreed to visit Person E at home. During two home visits, Person E was physically aggressive and would not speak to Trust staff. At a third home visit, Person E spoke to the Trust staff. “

Parliamentary & Health Ombudsman (2019)

This section highlighted two issues for me. The first is the refusal to accept the referral. One of the biggest factors in such refusals are the school. Many of us will be familiar with the saying “we don’t see that in school”. This is highly problematic because not only does it miss the nuances of masking, it sets the stage for future practices of Institutionalised Parent/Carer Blame (IPCB) that can become accusations of Fabricated or Induced Illness (FII).

Something else I noted in the report from the ombudsman was the mention of aggressive behaviour and refusal to speak to CAMHS staff. Aggressive behaviour can occur for any number of reasons, but is usually indicative of emotional dysregulation (which is common for Autistic children in mainstream educational settings) or interoceptive stimming, implying a significant degree of unmet sensory needs.

“Person E was then diagnosed with autistic spectrum disorder. Six months later, the Trust sought to discharge Person E from its service. Person E’s GP then made a further referral to the Trust, which the Trust considered but did not accept. Person E’s GP attempted a further referral to the Trust. The CAMHS service was transferred to another Trust at this time, which continues to care for Person E.”

Parliamentary & Health Ombudsman (2019)

This particular quote is at the bottom of the background section. It is again stating something that is not so uncommon. It highlights that following a diagnosis, the Autistic young person was discharged from CAMHS services. This is despite the fact that the child had demonstrated clear signs of emotiona dysregulation and distress. I call this the “diagnose and ditch” approach.

What was the complaint towards CAMHS?

Image Reads "Complainant G complained that the Child and Adolescent Mental Health Services (CAMHS) at the Trust did not accept the referral from Person E’s GP in a timely manner and then did not provide a diagnosis or treatment for three years. Complainant G also complained that the Trust discharged Person E too soon. Complainant G complained that the Trust refused to handle the complaint and referred it to another Trust. They also complained about delays in responding to the complaint. Complainant G said that, as a result, Person E’s condition worsened until it reached crisis point. Complainant G said Person E has missed out on three years of education. They told us of concerns they had for Person E’s future health and the support they need. Additionally, Complainant G told us of the emotional impact on both Person E and the family."

I would like at this point to highlight thee bottom paragraph of this screenshot. It highlights that due to inappropriate discharge from CAMHS after being diagnosed Autistic, this young person missed out on three years of education. Rightfully, the person making the complaint was concerned for the future of the young person.

“There are over 160,000 autistic pupils in schools across England.* Over 70% are in mainstream school, with the rest in specialist education, home educated or out of education altogether. With this report, we sought to understand their experiences and found a deeply troubling picture.”

National Autistic Society (Back to School Report 2021)

The above quote demonstrates that 30% of Autistic children and young people are in alternative provision or no provision at all. One should note that accessing a suitable alternative to mainstream education can take years, and so many of those young people will have missed out on a significant portion of their education. CAMHS play a significant role in the negative outcomes associated with this issue.

What did the Ombudsman say regarding CAMHS?

“As a result of these failings, the Trust missed the opportunity to help Person E and the family develop the appropriate steps to support her mental health. Person E suffered prolonged mental ill health. Person E and the family were left without the ability to manage Person E’s condition at the time.”

Health & Parliamentary Ombudsman (2019)

The Ombudsman stated that CAMHS had failed by not allowing a proper engagement. This was due to inappropriate approaches to the child that could have been handled differently. They highlighted the needs for dynamic approaches to communication and behaviour, and highlighted that when approaches didn’t work, new approaches should have been employed.

They noted that CAMHS taking 18 months to diagnose, only to discharge, was a failing on the part of professionals that contributed to a significant amount of stress caused by a lack of support for the family to help their child. They note the lack of a care plan that would have designated the support needed for the Autistic young person.

All of these things are, unfortunately, a daily occurrence in CAMHS.

What were CAMHS required to do?

“We recommended the Trust pay Person E £1,500 for the impact the lack of treatment had on them. We also recommended the Trust pay Complainant G and the family £500 for the distress they experienced.
The Trust complied with our recommendations.”

Parliamentary & Health Ombudsman (2019)

The above quoted section was the only actionable recommendation made. Beyond this, the trust were told to apologise, and learn from their failings. The “we will learn from this” approach has been used for time in memoriam to avoid making any meaningful change to services. CAMHS staff need a completely new and restructured service that requires input and training from Autistic and neurodivergent people. Current training is significantly sub par, and Autistic children are literally suffering because of it.

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David Gray-Hammond 0 Comments
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