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Oct 21 2023
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.

Please sign the CAMHS petition here

Visit the campaign page on this website

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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.

Get the latest on the CAMHS Crisis

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David Gray-Hammond 0 Comments
Jul 28 2023
Autistic Parenting: Supporting our Autistic children’s mental health when services won’t

This article was co-authored by David Gray-Hammond and Katie Munday

There is an ongoing crisis in services such as Child and Adolescent Mental Health Services (CAMHS) when it comes to Autistic young people’s mental health. Failing to support our Autistic young people can have a big impact on our wellbeing as parents as we watch our children go through the same systemic discrimination that we have often experienced ourselves.

Support for the child means support for the whole family

Seeing the invalidation and gaslighting that can take place when approaching CAMHS can lead to trauma responses in ourselves. Importantly, appropriate mental health support will provide support to the whole family. Family members of traumatised Autistic young people can experience their own trauma by witnessing what has been conceptualised as “challenging behaviours” (Munday, 2023; Gray-Hammond, 2023). Witnessing self-injurious behaviours can be a particularly upsetting experience, especially when these behaviours are used against families when they reach out for support. The medical model centres “problems” within the child rather than in the systems which fail to support them.

Failures by CAMHS to support Autistic young people can create an environment that has the potential to traumatise the entire family unit; not just the young person. Stewart et al (2017) indicated that PTSD may be more prevalent amongst parents of Autistic young people, who are less likely to approach services for support with their own mental health. Unfortunately, such research ignores the possibility of parents being Autistic and having their own previous trauma (Gray-Hammond & Adkin, 2021). Again, the blame unfairly sits with the Autistic young person who must take responsibility not only for their own mental health but that of their family members.

Institutionalised Parent/Carer Blame

Institutionalised parent/carer blame is a significant issue for Autistic parents (Clements & Aiello, 2021) with some going as far as experiencing accusations of Fabricated or Induced Illness (Gray-Hammond & Adkin, 2022). CAMHS have been known to refer families to safeguarding instead of providing support with mental health. Another approach is to send parents on parenting courses such as the Cygnet Parenting Program from Barnardos. In these cases, it is clear that a child’s mental health concerns are being blamed upon parenting styles as opposed to environmental issues. Saying nothing of the deficit based ideologies which underpin these programmes.

Parent/carer blame can be a significant source of trauma that may deter families from approaching services again in the future. CAMHS and other services are creating a hostile environment that excludes Autistic young people in more ways than simply refusing to see them. There is also an inherent misogyny in parent/carer blame with mothers taking the most accusations since the days of Bettelheim. There is also a great deal of invalidation from service providers for Autistic parents who are seen to be projecting their own issues onto their children.

Minority-stress is amplified by CAMHS failure to support Autistic young people

Minority-stress can be understood as the collective pressure of multiple areas of discrimination and ostracisation. This can include things such as discrimination in the healthcare setting (Botha, 2020). Stigma is also a major contributor to minority-stress (Botha & Frost, 2018), of which there is a plentiful supply within services such as CAMHS. This stigma affects not only the young person, but also their parents.

“Minority stressors such as victimization and discrimination, everyday discrimination, expectation of rejection, outness, internalized stigma, and physical concealment of autism consistently predicted diminished well-being and heightened psychological distress”

Botha & Frost, 2018

It has also been suggested that everyday discrimination goes hand-in-hand with an expectation of rejection (Botha & Frost, 2018) which can itself make accessing services like CAMHS incredibly triggering for Autistic parents.

In conclusion

Parenting an Autistic child who is experiencing distress due to their mental health is a traumatic experience. To be clear, this is not because of the child themselves, but because services like CAMHS are inherently hostile towards Autistic people and our families. Reaching out for support can cause more trauma, effectively isolating already marginalised families. The very services which are meant to support us often do us more harm. It is clear that CAMHS has a long way to go in order to support Autistic children and young people, and their families.

Click here to sign the CAMHS petition.

Check out this seminar (free to Autistic parents) on burnout by David and Tanya.

Find more information about CAMHS here.

References

Barnardos Parenting: Cygnet Parenting Program. https://barnardos-parenting.org.uk/

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

Botha, M., & Frost, D. (2018). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 10 (1).

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Gray-Hammond, D (2023) Challenging Behaviour: The weaponisation of Autistic experience. https://emergentdivergence.com

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

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. https://emergentdivergence.com

Munday, K. (2023) The truth about “challenging behaviour”. https://autisticltd.co.uk

Stewart, M., McGillivray, J.A., Forbes, D., & Austin, D.W. (2017). Parenting a child with autism spectrum disorder: a review of parent mental health and its relationships to trauma-based conceptualisation. Advances in Mental Health, 15 (1), 4-14.

David Gray-Hammond 1 Comments
Jul 20 2023
CAMHS is not fit for supporting Autistic young people: Here is the evidence

It’s no secret in the Autistic community that autism is a deciding factor in the success of a young person’s referral to CAMHS. For a long time, Autistic people and their families have been speaking out against the practice of gatekeeping of services and diagnostic overshadowing by professionals. During my time trying to put these failures into context I have found some interesting pieces of evidence that prove the government have known about these failures for a long time. In this article I intend to go over the executive summary of a 2014 document submitted to parliament by Act Now For Autism.

What did the document look at?

The document considered the real life experiences of Autistic people and their families when engaging with CAMHS. Despite the revelation of egregious failures as early as 2014, our government has still failed to address the issue. I have previously covered another one of these documents from a similar time period. Charities have been presenting the government with data for some time now, and yet nothing changes.

The executive summary of the document

I will now go through each point in the executive summary, providing commentary and context for the findings.

“Far too many CAMHS lack the required level of expertise, knowledge and understanding about autistic spectrum conditions. A lack of expertise, knowledge and understanding of autism is preventing the service from being able, to support and to meet the mental health needs of children and young people with autism.”

Act Now for Autism document CMH0205

Sadly this isn’t something unique to CAMHS. Professionals around the world are often taught stereotypical, race and gender biased presentations of autism. On top of this, professionals often lack experience of Autistic culture. In truth, the positioning of autism as a disorder within the realm of psychiatry means that most professionals do not even know of the Autistic community, let alone the fact that we have our own culture and language.

This is a matter of cultural competency. Professionals can not create a safe space to work with Autistic people while they lack an extensive understanding of Autistic culture. This knowledge is vital to the establishment of beneficial therapeutic relationships, a lack of competency in Autistic experience and culture is probably one of the driving factors behind the assertions of gaslighting and invalidation inflicted on Autistic people by mental health professionals.

They simply don’t believe our description of our own thought processes and experiences.

“A talking shop, nothing more. Words but no action.”

Act Now for Autism CMH0205

This is quite a common experience for Autistic people of all ages. In particular it connects to the previous point. It does this because in these talking experiences, Autistic people of all ages often spend more time educating the professional about their experiences and thoughts. This highlights (once again) the distinct lack of knowledge among professionals. Because of these things, professionals often talk a good game while failing to follow through on any meaningful support. The service user is then positioned as “not engaging” in order to shift the blame away from a inadequate service.

“The professionals who operate the triage system for some CAMHS have no understanding of autism whatsoever and so children are not being referred on to professionals who may be able to meet their mental health needs.”

Act Now for Autism CMH0205

The triage system is a point of contention for many people trying to access CAMHS, it is not just a problem for Autistic people. The criteria set forth is usually very restrictive in order to gatekeep access to resources that are in short supply thanks to years of the government under-funding services. In terms of Autistic people and the triage system, however, there are some important notes to make.

Statistics suggest the 70-80% of Autistic children have experienced a mental health problem in their lifetime. Despite this, only 1 in 10 CAMHS patients are estimated to be Autistic. It seems reasonable to assume that this disparity may begin at the triage level. Professionals who do not understand co-occurring neurodivergences will inevitably not understand how alexithymia affects the presentation of one’s mental health or things such as atypical burnout that may again cause an Autistic child to present to services differently to non-Autistic children.

If professionals screening Autistic young people do not have a good knwoledge of autism and Autistic experience, many children and young people will inevitably fall through the cracks.

“An inability to identify real need. Suicidal children and self harming are often not taken seriously by the services.”

Act Now for Autism CMH0205

This is a pervasive issue with professionals often invalidating self-injurous behaviour as a manipulative tactic. This is deeply alarming given that we know Autistic young people are up to 28 times more likely to think about or attempt suicide than the general population. Autistic young people have died under the care of CAMHS and attitudes such as those outlined above are a major contributory factor.

“The service is fixed and rigid and unable to differentiate its provision to meet the mental health needs of children and young people with autism.”

Act Now for Autism CMH0205

A good mental health service will have flexibility and be led by the service user. There is no one-size-fits-all approach to mental health. Rigidity and lack of individual differentiation only reinforces power imbalances between the service user and professional. Such practices reduce the accessibility of the service, positioning Autistic people as refusing to engage when in fact professionals have made the environment hostile by expecting conformity.

“It can take months, or even years before a diagnosis of autism is given.”

Act Now for Autism CMH0205

This situation has only become worse in the years since this evidence was presented to parliament. Nice guidelines state that patients should be seen for a first appointment within 13 weeks of referral. Despite this, 84% of the approximately 190,000 people awaiting assessment are waiting beyond this with waiting times expected to exceed two years. In the meantime, CAMHS will turn away children awaiting assessment for or currently diagnosed with autism. Not only are children not being diagnosed and supported to thrive as an Autistic person, their mental health is being neglected by the very people whose job is to help them.

This is assuming they even refer you for diagnosis, and that you don’t fall foul of parent/carer blame and/or accusations of Fabricated or Induced Illness (FII)

“After diagnosis there is often no more contact with the service at all.”

Act Now for Autism CMH0205

Once again, this comes as no surprise. Post-diagnostic support in the UK is, quite frankly, abysmal. It doesn’t exist. To top it off, autism diagnosis is often used to deny support by CAMHS in favour of learning disability teams that also lack the specific expertise to understand Autistic presentations of mental health. Of course some CAMHS locations use diagnosis to refer you to safeguarding, which can cause all manner of problems for the Autistic person and their family.

“CAMHS are often very reluctant to tell the parents if the team they are seeing with their child has any specialism in autism.”

Act Now for Autism CMH0205

I personally feel that behaviour like this is a significant red flag. If a professional won’t tell you whether they have the expertise to support your child, they probably don’t. You wouldn’t expect a heart surgeon to hide whether or not they have the expertise to perform heart surgery, why do we allow this in CAMHS?

“Parents are physically uprooting and moving to other areas in a bid to access the much needed mental health support that their child or young person requires.”

Act Now for Autism CMH0205

Sadly, this is not a surprising revelation. Mental health provision in the UK has always been a postcode lottery with some areas having markedly better services than other parts of the country. Despite this disparity, people from all areas of the country are reporting the same issues outlined in this article. If your service is so unfit for purpose that people are having to move their life to a different area to avoid you, you have some significant issues to address.

“There is no transition between children’s and adult mental health services and often no adult mental health services to access post 16.”

Act Now for Autism CMH0205

This is a significant issue. For those with an EHCP in place, transition to adulthood is supposed to begin at 14 years of age. Sadly, this is often neglected. In terms of CAMHS, there is often an attitude that we outgrow our struggles by age 18. Adult mental health services are difficult to navigate and just as difficult to access as CAMHS. The lack of transition from CAMHS to adult services endangers the wellbeing of countless Autistic young people.

Conclusion

Do not forget that this document was presented to parliament in 2014. That’s nearly 10 years ago. Nearly a decade later we still have not made progress. Autistic young people and adults continue to suffer and die needlessly because of the failure of services such as CAMHS. The refusal to adequately improve services is, in my opinion, tantamount to criminal neglect of their duty of care. It is only by publicly holding these services accountable that we can ever hope to see meaningful change.

Please help us start the change by signing this petition

Read the full document this article is based on here

Visit the CAMHS Crisis Resource Page
David Gray-Hammond 2 Comments
May 29 2023
Creating Autistic Suffering: CAMHS kills kids

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

This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.

Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.

Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.

If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.

You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.

What might CAMHS offer?

“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”

Charlotte, CAMHS Professional

CAMHS may offer:

  1. Medication–
    • This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
  2. Talking Therapy–
    • If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
    • Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
  3. Parenting Courses–
    • You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
  4. Parent Blame–
    • Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).

” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”

Jenny, Parent of child under CAMHS

What do Autistic children and young people with mental health concerns actually need?

“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”

Charlotte, CAMHS Professional

They need:

  1. Sensory Integration trained Occupational Therapists
    • This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
    • There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
  2. Mental Health professionals that will call out the school system for the trauma they cause
    • Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
  3. Competence
    • As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.

“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”

Jane, former CAMHS Professional

Where does this leave us?

We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.

References

Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.

Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.

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

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.

Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. Emergent Divergence.

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

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.

Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.

David Gray-Hammond 16 Comments
May 20 2023
Failure by the NHS to adhere to the United Nations Convention on the Rights of Persons with Disabilities

This article was written by an anonymous guest author

This post references:

UN Special Rapporteur on Torture

UN Convention on the Rights of People with Disabilities

UK Mental Health Act (1983)

We are at a pivotal crossroads on our path towards a fairer society, faced with a monumental issue that, while hidden, carries unsettling implications.

The UK’s National Health Service (NHS) has repeatedly been implicated in serious violations of human rights, as outlined by the United Nations conventions on the rights of disabled persons. This is not merely an affront to international law; it’s a harsh, terrifying reflection of the suffering inflicted on people with disabilities under the pretext of health care provision.

The UK Government’s ratification of the UN Convention in 2008 was a potent commitment to protect disabled people’s rights, obligating domestic legislation to align with its principles. However, as we traverse through 2023, it’s distressingly apparent that the NHS has systematically breached this social contract, casually discarding the rights of the disabled.

The NHS’s Mental Health Act 1983 blatantly contravenes the UN Convention, notably:

• Article 12, Equal Recognition Before the Law: This Act permits restriction of legal capacity based on mental health status, infringing upon personal autonomy and decision-making rights.

• Article 14, Liberty and Security of the Person: This Act shockingly allows involuntary detention and treatment of people with mental health conditions based on their disability, violating their right to liberty and security.

• Article 15, Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment: This Act neglects to shield individuals from non-consensual treatments such as electroconvulsive therapy and psychosurgery, which could amount to torture or inhumane treatment.

These issues have persisted for years. In 2013, the UN Special Rapporteur on Torture called for an outright ban on these reprehensible practices.

Regrettably, the proposed Mental Health Act reforms lack the depth needed to align the NHS fully with the United Nations Convention. A fragmented approach is grossly insufficient in addressing these grave infractions.

The field of psychiatry has largely remained reticent on this matter, often keeping these concerns concealed. The victims, who are often society’s most vulnerable, have their stories systematically suppressed.

Alarmingly, our media has mostly remained mute, a tacit accomplice to these profound human rights violations. The much-needed transparency is missing, replaced by a stifling silence that only magnifies the problem.

We must break this silence with knowledge, empathy, and decisive action. Disseminate this information broadly. Challenge the apathy that perpetuates these horrors.

We must unite and place collective pressure on the NHS to uphold its duty to protect the rights of disabled persons. The time for change is now. Let us stand together and navigate our society towards a future where health care is genuinely fair, and human rights are unreservedly respected.

David Gray-Hammond 1 Comments
Apr 12 2023
CAMHS ignorance of Autistic children runs deeper than refusing to see them

As I have mentioned in previous articles (which can be found here and here), there is an ongoing petition which at the time of writing has over 180,000 signatures. This petition was started because of the ongoing issue with the Child and Adolescent Mental Health Service (CAMHS) refusing to see or support Autistic children and young people.

This in itself seems bad enough, Autistic people deserve support with their psychological wellbeing as much as anyone else, and with the high incidence of trauma among Autistic people, you can imagine that a service like CAMHS should be a lifeline to us. Instead, we are almost always turned away, and our families are left to work it out with us on their own.

The issue with CAMHS and mental health services in general is deeper than gatekeeping and ignorance, however. It comes down to a sort of cultural competency that most professionals lack when they are working with Autistic service users. What is needed is Neurodivergence Competence.

This particular type of competence was conceptualised by Tanya Adkin, which we then wrote about in our co-authored Creating Autistic Suffering blog series.

Essentially, it requires the creation of Autistic safety via a distinct level of competence in Autistic culture, theory, experience, and a broad understanding of the discrimination we have faced both historically and contemporarily. This is what is missing from CAMHS services.

If CAMHS staff had a good understanding of what being Autistic meant, they would not have to turn Autistic children and young people away from their services. The reason they can not work with Autistic people is due to a lack of competence around neurodivergent experience and culture.

While Autistic peers are going to be in a stronger position to provide this kind of care, it is not something that needs to be gatekept to Autistic professionals. Non-Autistic professionals can achieve this kind of competence by engaging in Autistic spaces and accepting the expertise of those who have actual Autistic experience. It’s possible to attain neurodivergence competency by accepting that, at best, your knowledge is second-hand.

Respecting a person’s life and culture can go a long way to improving the way you work with them.

Until such a time that professionals within CAMHS become competent in working with Autistic and otherwise neurodivergent young people, they will continue to fail them. No amount of mandatory training, frameworks, strategies, or specialist services will equate to the importance of this kind of competence.

So please, sign this petition, and help us start the drive to make a CAMHS that is helpful for everyone.

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David Gray-Hammond 1 Comments
Mar 28 2023
York Health and Care Partnership are going to harm Autistic adults

Let me start by being candid. This is the third time in the past seven days that I have had to write an article like this. We’ve had an expose on the inhuman treatment of Autistic people in psychiatric inpatient units and let’s not forget that NHS Trusts in the south-west of England adding criteria to deny Autistic children assessment. Now, it seems that York Health and Care Partnership are taking some lessons in the same approach but for adult referrals.

I first came across this issue thanks to this article at York Disability Rights Forum.

There are three new, and very extreme, criteria being added to referrals for adult autism and ADHD assessments, that effectively mean the vast majority of assessments will be refused. The referral criteria are as follows:

Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing
From York Disability Rights Forum article

These criteria are unacceptable, and will endanger the wellbeing of huge numbers of undiagnosed Autistic adults, who have been forced to survive childhood without access to their own identity already. The partnership is offering a self-assessment to people who do not meet this criteria which will not be diagnostically valuable, or provide access to things like medication for ADHD’ers. It will also not suffice as proof of disability for the benefits system.

I understand that with referrals skyrocketing, a heavy toll has been taken on diagnostic services. This does not make it okay to deny disabled people access to the validation and support that can come from diagnosis. At a time when the NHS should be demonstrating its importance, it is instead breaking the oath of “do no harm”.

Harmful doesn’t even feel like a strong enough word for this. Autistic people are significantly more likely to die by suicide. This is going to compound that. They claim this is a three month pilot programme. What are the intended outcomes? Of course, this will reduce the number of referrals, but we are sacrificing real people in the name of protecting budgets. Human life does not have a monetary value. We are not a commodity. We are living breathing creatures with complex inner worlds and feelings.

The fact that all of these stories are breaking in the lead up to autism acceptance month is not lost on me. The NHS has made it clear that there is no autism acceptance beyond what their budget will allow. If too many of us exist for them, they will just pretend we don’t exist. This is what happens when universal health care is run on business models. Human lives become less valuable than annual reports that earn you a financial bonus.

I am so done with this. I’m not just taking this lying down, and neither should you. We are a proud and supportive community of neurodivergent people, and we will have the last say on how we are treated. Whether you have a diagnosis or not, you are one of us, and I will fight for you.

David Gray-Hammond 0 Comments
Mar 26 2023
NHS services in England’s South West are endangering Autistic children

Today, I came across an article by The Guardian that raises a life-threatening issue. It seems that due to a 350% increase in referrals for autism diagnosis amongst children since the pandemic, NHS managers have moved the goal posts and added extra criteria to meet before a child can be referred. Unless a child meets these criteria, they will not have access to diagnosis, with the irony being that early diagnosis could stop them from meeting this criteria; which indicates an extreme level of suffering to be required before getting the admittedly already pitiful support that is available.

Let’s look at the criteria, as discussed on the Sirona Website:

Who can be referred? Children and young people meeting the following referral criteria can be referred : Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET – not in education, employment, or training – and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.  Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person’s needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning). Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others). Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours. Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)

This means that we are expected to wait until a child or young person is already in crisis before they will even refer them for diagnosis. It’s tantamount to negligence and threatens the wellbeing of a demographic that is already significantly more likely to die by suicide.

People on Twitter are also speaking out against these unethical criteria.

Tweets like this highlight the fatigue so many of us feel from trying to make sure Autistic people are supported.

What are we supposed to do when those who are supposed to support us only choose to do it when they are given no other choice? How do we fight back against the brazen demonstration of how inconvenient our existence is considered?

Autistic children and young people will end up in crisis and maybe even die due to rules like these.

This is not ethical, and it is a failure to ensure reasonable adjustments. It is an overt indicator that equality laws can be broken when it’s too inconvenient to follow them. The NHS needs to put a stop to this before more lives are lost.

We are Autistic, and we deserve to be consulted before such inhuman criteria are created.

For further reading about the failure of the NHS to support and protect Autistic people, please check out these articles:

CAMHS nearly killed me, and it’s not okay.

CAMHS in crisis: The systemic failing of Autistic people

Autistics Incarcerated: The dark underbelly of the NHS

Here is a petition to reverse these criteria changes

David Gray-Hammond 1 Comments
Mar 25 2023
Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

David Gray-Hammond 11 Comments
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