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Jul 27 2023
I was an Autistic psychiatric inpatient: Here’s what I would change in the mental health system

Autistic people are exposed to inordinately high rates of trauma and mistreatment. It is unsurprising then that a large portion of us develop mental health struggles. Where there are concerns around mental health, there are also issues regarding inpatient treatment, both voluntary and involuntary, under the UK’s Mental Health Act. There are currently 1,310 Autistic people under inpatient care, with 93% of inpatients under 18 being Autistic (as of this report in June 2023). Inpatient mental health treatment is a significant issue not just because of our mental health, but also because many of us have been forced to remain in such facilities for months, if not years.

Why are there so many Autistic people in psychiatric facilities?

According to a document submitted to parliament. The following is a significant factor:

“The lack of appropriate community mental health care for autistic people means that some reach crisis-point and are admitted to mental health hospitals.”

National Autistic Society, Document submitted to parliament

This is not a new finding. Community mental health services in general for both adults and children are shockingly underfunded, under-resourced, and not skilled in working with Autistic service users. One might look towards the current CAMHS crisis to consider how a lack of accessibility to good quality and timely assessment and treatment in the community can result in a person reaching crisis point.

We also need to consider the lack of social care support from local authorities. Autistic people all over the country are often gatekept out of vital services that they are entitled to due to failure in the social care sector. Long waits for mental health and social care services are potentiating the the journey towards mental health crises.

What was my own experience as an Autistic inpatient?

Psychiatric wards are intimidating places. I spent the first 48 hours under round the clock supervision. Every aspect of my day-to-day life was under the microscope. Something I witnessed regularly and experienced myself, was the use of restraint. For me, this took the form of chemical restraint, being given powerful tranquilisers that kept me quiet and sedentary. Staff would treat me as a nuisance in their workplace, forgetting that I did not want to be there anymore than they wanted me there.

The building was almost prison-like in its design, with doors that could be closed and locked at the touch of a button, and walls with wire fences on top of them. The beds had plastic mattresses with plastic pillows. Sleep was not an issue because of how sedated they kept me. Staff had no idea how to even identify an Autistic patient, let alone good practice for working with them.

Restraint in psychiatric wards

Autistic people are significantly more likely to be the victims of restraint and seclusion. The International Coalition Against Restraint and Seclusion recently published a report into the use of restraint in schools showing just how common this is in non-psychiatric settings. I assure you it is worse on psychiatric wards.

Chemical restraint is very commonly used in this setting, in fact, I would argue that every single one of us on the ward was chemically restrained. The Care Quality Commission found the following:

“The Mental Health Services Dataset published by NHS Digital for August 2021 shows that 2,465 people in a mental health inpatient setting were reported to have been subject to restrictive interventions in the month, and there were 17 restraints per 1,000 occupied bed days.The data also shows that in August 2021, 790 people were subject to chemical restraint. Among these people, chemical restraint was used on average 2.5 times per person”

Care Quality Commission, December 2021

“…providers did not always recognise how distressing the use of restraint and other restrictive practices could be for people. They also did not recognise the long-term impact of being in restrained, secluded or segregated.”

Care Quality Commission, updated March 2022

It is clear that restraint is used too frequently and in dangerous ways, and yet this continues. Despite the Code of Practice calling for use of least restrictive practices, this is an issue that is prevalent for many inpatients.

What does the code of practice say about Autistic people?

The most interesting part of the code of practice is the following:

“Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to find detention in hospital anxiety provoking.”

Mental Health Act (1983) Code of Practice

Given this we have to consider that the concept of least restrictive practice and the code of practice itself are being failed by the lack of adequate community services. Autistic people are being locked away because there are no better options. That should not be a good reason to do such things.

The code of practice also states:

“If a person with a learning disability or autism is detained under the Act, a comprehensive assessment of their needs should be undertaken to ensure that reasonable adjustments required by the Equality Act are made”

Mental Health Act (1983) Code of Practice

In my experience, this requirement is rarely met, with Autistic people often being given the same treatments and approaches as every other inpatient.

What can we change?

First and foremost, we can change the lack of tailored community mental health support. We should be supporting Autistic people with their mental health within their community and following principles for least restrictive practice. If Autistic people had this they would be less likely to be sectioned under the mental health act. In particular I think of the 93% of inpatients under 18 who are Autistic. How many of them were turned away by CAMHS before finding themselves under section?

Staff need to be significantly up-skilled. This means training them in Autistic experience using competent Autistic trainers who can help to contextualise information. Services would be able to better support Autistic people if they understood the nuances and differences in our experiences. Staff who are better prepares are also less likely to resort to the use of restrictive practice.

Parents need better support. Parents of Autistic people are more likely to be socially isolated creating tension in the family environment that can decrease the mental wellbeing of the whole family unit. We must also remember that many Autistic children and young people have Autistic parents and carers.

We need service user involvement models to be implemented in service commissioning. When a service is designed and implemented, it should be mandatory for service users to be involved in the design and implementation of service provision and policy. A service without the input of service users is fundamentally flawed.

Finally, we need improvements to social care provision that would allow for services to implement support that reduces the psychological burden of being Autistic in an environment not designed to support you. Improvements in social care can make a big difference to the psychological wellbeing of Autistic people.

It is clear that Autistic people require a great deal more from the services that currently exist than what is available. The issues above are not an exhaustive list and until such time that issues within the mental health system are addressed, Autistic people will continue to be inappropriately help in inpatient settings.

What can you do now?

Visit the CAMHS Crisis page of this website.

Sign the petition to make CAMHS accept Autistic young people.

Learn about Autistic experience- this seminar on burnout I am giving with Tanya Adkin is free for Autistic Parents.

Share this article and similar articles.

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 1 Comments
Jul 5 2023
The UK government knows CAMHS is failing Autistic children and they still aren’t fixing it

As you may know by now, there is an ongoing campaign to get CAMHS to open up their doors to Autistic service users. CAMHS have long been known for inappropriate support or complete lack of support when it comes to Autistic young people experiencing psychological distress. One might be forgiven for thinking that our UK government is going to change this, however it seems as though they have been aware of this issue for some time and still fail to fix it.

In particular, this article will highlight a document produced for the house of commons, looking into CAMHS treatment of Autistic young people. The document, written in 2014, details some worrying failures that are yet to be properly addressed. The document is titled “Written evidence submitted by the National Autistic Society (CMH0163)”. I am going to go through it and deconstruct it’s content.

We begin at the introduction.

Introduction

To begin with I would highlight the following:

“Our research found that whilst we know that one in 100 children has autism, more than seven in ten children with autism also have a co-occurring mental health problem. Many of these problems are entirely preventable, with the right support.”

Section 1.4 of document

It is clear that Autistic people experience a higher rate of mental health concerns than the general population to anyone that has contact with the Autistic community. There have been numerous suggestions for the cause of this, but my opinion is that trauma and lack of access to appropriate diagnostic and post-diagnostic support is a big driving factor.

Support is more than mental health services. To appropriately support Autistic people we need a holistic approach. Much of my work as an advocate is facilitating knowledge exchange with schools and other young people’s professionals on how to appropriately support Autistic young people. Mental health support is a vital lifeline, but would not be as necessary if a child’s needs were met within their environment.

I would next highlight this:

“Our researched showed that unfortunately, once these mental health problems develop,
children with autism aren’t getting the necessary support from CAMHS.”

Section 1.5 of document

One might argue that there is currently no meaningful mental health provision for Autistic children and young people, with learning disability services often being more focused on life skills training than addressing the fallout of a neuronormative society.

“When the right support is not provided at the right time, the impact on these vulnerable
children and their families can be devastating. The You Need To Know report investigated the
impact of mental health problems on children with autism and their families. Our research
found that:
– 71% of children with autism have at least one co-occurring mental health problem,
while 40% have two or more.
– 1 in every 10 children who access CAMHS has autism.
– Just one third (32%) of parents of children with autism believe that CAMHS have
improved their child’s mental health.
– 9 out of 10 parents told us that the mental health problems faced by their child had
had a negative impact on their own mental health (88%) and on the family as a whole
(91%).”

Section 1.6 of document

It is evident from these statistics that mental health is a big area of concern for families of Autistic individuals as well as the Autistic people themselves. Despite this, only 1 in 10 children accessing CAMHS is diagnosed Autistic. Would this figure be higher if Autistic people were given proper access to such services, and in which case, what does support for an Autistic person look like in CAMHS?

We also need to consider the harm that is done to the family unit when Autistic people are not given appropriate support. Parenting is difficult, navigating neurodivergent experiences is a steep learning curve. Throwing mental health issues into the mix risks the wellbeing of all involved and potential breakdown of the family unit. What are CAMHS doing to support the families of Autistic young people? If the family environment is struggling, the Autistic young person will also struggle.

“The You Need to Know report showed that 44% of parents found it difficult to get a first referral to CAMHS for their child. Once the referral is made, 25% waited over 18 week for their first appointment. This means that families are often left for several months to support their child with little or no mental health support.”

Section 2.2 of document

This highlights that even 9 years ago, parents of Autistic young people were raising concerns about accessing CAMHS and having success with referrals. Despite this, the government has made no meaningful difference in representing Autistic young people’s best interests.

“L received one appointment with CAMHS, the next appointment was cancelled. L’s case was
allocated to another staff member without the family being told. L had one more appointment
one month later, and the worker who saw L spoke to him only very briefly. Staff seemed to
have little experience or no understanding of autism.”

Section 2.4 of document

This is not an unusual story, the interviews I conducted highlighted many of these sorts of situations occurring within the walls of CAMHS units. While we now have the Oliver McGowan Mandatory Training (OMMT) for NHS staff, they still lack a great deal of the competence needed to effectively support Autistic people.

Lack of specialist support

“J had to wait 12 months before he was seen. By then he urgently needed support after he was involved in a severe incident at school. This lack of support resulted in J completely shutting down, and caused him to be out of education.”

Section 3.4 of document

Part of my day job is working as a young person’s mentor in alternative provision. Time and again I see young people excluded from education because the support they need to thrive does not exist. The National Autistic Society’s School Report 2021 found the 1 in 5 parents reported that their child had been informally excluded from educational settings. This means that 20% of families had Autistic young people unable to access the educational setting.

Services like CAMHS failing to support Autistic people cause these kinds of issues. When Autistic people don’t have a good sense of wellbeing, they are likely to struggle more accessing the world at large.

“J’s family say they have given up on CAMHS. They have twice reached crisis point, but during the last one, they didn’t try to get a referral back to CAMHS. By being denied the specialist help at a younger age, J’s mental health deteriorated rapidly, having a terrible and traumatic affect on him and the family especially his younger brother.”

Section 3.9 of document

Childhood is an important part of everyone’s life. Things going wrong in the earlier years of our life can have a huge impact on Autistic people’s lives. At this point I would highlight the research of Weir et al (2021) out of the University of Cambridge that found Autistic adolescents and adults were significantly more likely to report self-medication with recreational drugs, and the Royal College of Psychiatrists statistic that we are nine times more likely to die by suicide than our non-Autistic peers.

Statistics like this are a direct result of the lack of nurture and support offered to Autistic young people. Want to know why an Autistic person is struggling? Look at their childhood experiences and the way their own existence has been framed. When Autistic children are viewed as “too complex” to support, they internalise the belief that they are a burden.

“At 17 years old J is now classed as a looked after child. His family couldn’t cope anymore, and he has years of catching up to with his emotional development, his education and his all-round wellbeing.”

Section 3.10 of document

Too many Autistic people end up classed as a “looked after child”. Parsons et al (2018) found that in some Local Authorities, up to 12.7% of looked after children are Autistic. This is yet another horrifying statistic that shouldn’t exist. Appropriate support is vital to the family unit.

Community mental health support

“Many therapies and interventions rely on processes and communication techniques that do not make sense to children with autism, and only skilful [sic] adaptation can make them relevant and useful.”

Section 4.2 of document

Neuronormativity is the idea that there is a correct way of thinking, feeling, and behaving. Autistic people are often victimised by the neuronormativity of society. A significant issue is the neuronormativity that exists within mental health services. Such approaches will only serve to further traumatise an already struggling Autistic young person. Despite knowing that this is an issue, there has been little to no work to improve this situation.

“…at every appointment afterwards he was asked if he wanted to kill himself. This caused C great distress and he didn’t want to attend appointments as he knew he would be asked direct questions. CAHMS then stated that he didn’t consent to therapy and wanted to discharge him. Because of the failings and lack of support the family now have a social worker who holds regular Team Around the Child meetings, but CAHMS and the health service will not attend.”

Section 4.5 of document

This is something I have come across in my role as an independent advocate. Autistic people struggle to engage with the aforementioned neuronormative approaches of CAMHS, and are then labelled as “refusing to engage”. This could be avoided by professionals learning about their service user’s unique set of needs, but instead CAMHS refuse to engage.

“No assessment of need has been offered and protocols have not been followed. [C’s] family are very concerned about the future.”

Section 4.6 of document

CAMHS refusal to do their job with regards to Autistic young people is life threatening. Autistic people are viewed as seperate from the adult world with the UK government stating that only 3 in 10 Autistic people are in employment. These need not be issues if services like CAMHS gave us appropriate support from a young age.

Inpatient mental health support

“The You Need to Know report found that a high proportion of children with Autism in the CAMHS system are currently in Tier 4 (6.5% of children with autism compared with 4.5% of those without autism). These children have the most complex or serious mental health needs, and will usually be extremely vulnerable. Because of the complexity and vulnerability of these children, any service failures can have a devastating impact on them.”

Section 5.2 of document

Tier 4 is part of tertiary care in CAMHS nomenclature and refers to inpatient treatment. This report found that Autistic young people were more likely to require a tier 4 bed. It seems reasonable to assume that with better access to CAMHS and more robust and useful support within CAMHS for Autistic peopled, there could be a reduction in Autistic children requiring an inpatient setting. Of course, this is not solely the fault of CAMHS with local authority social care services also being a causative factor in this statistic.

As of January 2022, 2,030 Autistic people were inpatients with 1 in 7 being under the age of 18.

We also need to consider the risk of mistreatment in the inpatient setting with more and more scandals becoming public each year.

Recommendations of the document

“We recommend that each Clinical Commissioning Group develops specific pathways for mental health support for children with autism”

Section 6.1 of document

To date this has not happened. CAMHS still lacks specific pathways and there is an ongoing crisis with Autistic young people being turned away from services.

“We recommend that all staff working within CAMHS have at least basic training in autism, and that staff completing assessments for children with autism have specialist training.”

Section 6.2 of document

While the OMMT exists, it does not go nearly far enough. Services will not offer meaningful support until professionals are competent in neurodivergent experiences. We need more Autistic professionals in CAMHS, although this wont nearly be enough to fix the issue.

“We recommend that the Government issues new statutory guidance to commissioners to support the effective planning and commissioning of appropriate local services for children with autism and mental health problems.”

Section 6.6 of document

Statutory guidance would be a wonderful thing, but if it is not co-created with the input of Autistic service users it will be performative at best, and detgrimental to our wellbeing at worst.

“We recommend that health and local authority commissioning must take specific account of CAMHS waiting times, rates of return and family outcomes for children with autism.”

Section 6.8 of document

This has been an ongoing issue for so long that Autistic people are engaging in activism to address it. Entire charities and CICs exist solely because this is still an issue.

Conclusions

The UK government is more than aware of this issue, and has been for at least a decade. They know that CAMHS are failing Autistic young people to the point of loss of liberty and life, and yet nothing is changing. Once again it falls to Autistic people to put the work in themselves and create meaningful change in a system that should have helped them from the start.

You can do your part to make the change real by signing this petition.

Read the full document here.

Despite extensive searching, the You Need to Know report mentioned in this document appears to no longer exist.

David Gray-Hammond 3 Comments
Jun 17 2023
CAMHS refusal to work with Autistic children violates ethical standards created by the House of Commons

If you are unaware of current issues with CAMHS, you can catch up by visiting my CAMHS Crisis resource page. However, the cliff noted version is this; Child and Adolescent Mental Health Services (CAMHS) are turning away Autistic children and young people from their services. This is very unethical, but that lack of ethics goes further.

You could be forgiven for not knowing what “Parity of Esteem” is. Parity of Esteem is a concept set forth by the House of Commons. The basic premise is that it requires an ethical approach that places mental health in equal priority with physical health. This has been important to the world of unschooling and EHCPs as it gives the two legal parity, allowing parent/carers to remove their child from the school environment for the best interests of their mental health.

One might think that this is a game-changing approach to the prioritisation of mental health, but unfortunately, one of the groups avoiding these particular ethical considerations is NHS mental health services themselves. CAMHS is regularly turning away Autistic people, which, in my opinion, gives the impression that Autistic young people’s mental health is of a lower priority.

Now, strictly speaking, they don’t leave you hanging every time. There are satellite services that deal with Autistic and learning disabled children. However, these services are often somewhat indifferent to psychological distress, and due to diagnostic overshadowing treat it as something that we should accept as an inevitability of Autistic experience.

Tanya Adkin and I have recently written about some of these issues. Even if CAMHS threw open their doors to Autistic service users, the infrastructure of that service is not fit for purpose. So, services that do agree to see us very often offer no meaningful support.

This highlights ethical issues over the lifetime of an Autistic person and could even create a CAMHS to prison pipeline. Allow me to explain.

Autistic young people who recieve no appropriate support for their mental health grow into Autistic adults with mental health issues. Mental health issues can result in a need to use emergency services. Here’s where it gets messed up.

There have been pushes for approaches to those who use emergency services due to mental health concerns to be approached with an intervention called “Serenity Integrated Mentoring” (SIM). Under SIM, people regularly detained under Section 136 of the mental health act can face criminal prosecution. This particular approach caused such outcries that NHS England has now distanced itself from the intervention.

This highlights, however, a move towards a world where Autistic people can face criminalisation for mental health issues no one will provide support for. I am certain that other unethical interventions will appear as we move forward. Let us not forget that Autistic people are already significantly more likely to attempt or die by suicide.

Until true legal parity is achieved between mental and physical health, marginalised groups will continue to suffer at the hands of under-resourced services. Never forget, when priorities are underestimated, disabled people are usually the first to be considered acceptable losses.

Help us start to tackle this issue by signing this petition.

David Gray-Hammond 4 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
Feb 17 2023
Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

David Gray-Hammond 1 Comments
Feb 13 2023
Mental health and the diagnostic process: A neurofuturist perspective

As I discussed in my recent article about co-occurring conditions, the diagnostic process in psychiatry is inherently flawed on the basis that we have failed to find any meaningful relationship between the so-called “symptoms” of psychiatric conditions, and physical biomarkers which can be measured. Despite this lack of physiological cause, we are still diagnosing people as mentally “ill”. Despite this model not improving outcomes for around half a century.

So now we are faced with the issue of how diagnosis is not just given, but also how it is given responsibly.

One of the biggest flaws of psychiatry is the circular logic that dominates the diagnostic process. A person is Schizophrenic because they have symptoms of Schizophrenia, and they have those symptoms because they are Schizophrenic. This logic does not allow for a nuanced understanding of why a person may experience this particular cluster of traits, it simply follows that A = B, which is because of A.

If this is the case, how does one escape from circular logic?

We have to look for causes for traits and “symptoms” outside of the realm of medicine. While I have often remarked that external factors are the only thing with a meaningful relationship to these experiences, medicine is yet to catch up. It seems reasonable to assume that traumatic experiences are the cause of psychiatric conditions and not a problem within the body. This has ramifications for the future of psychiatry.

If people are not “unwell”, psychiatry now has a moral duty to advocate for it’s patients. Psychiatry needs to evolve into a tool for social change, and cease to be a weapon wielded by normative society. Beyond this, psychiatry needs an understanding of the relationships between neurodivergence, trauma, and psychological distress. It is not enough for psychiatrists to bandage the wound, they need to remove the knife from the hand of society.

This requires us to radically rethink our entire perspective on normality and cultural normative standards. We can not just medicate people and expect them to assimilate into society. We need to help them understand their own unique space in the environment and how to embrace their journey through that space.

As I discuss in my book A Treatise on Chaos, identity is a shifting and ever changing value. We are, at our core, beings of chaos. Psychiatry needs to be a tool for supporting us in the more challenging parts of that chaos, and not serve as a ring-fence around the Self.

Psychiatry is not completely off the trail. Medication can serve as an important tool to support a person’s wellbeing, and can be very helpful for reducing the more troubling and distressing aspects of psychological distress. The most important thing is that we all put in the work to evolve psychiatry and mental health support into a means to challenge the oppressive systems that exist within our world.

It’s time to stop the navel-gazing, and build a better future.

David Gray-Hammond 0 Comments
Jan 30 2023
Neuroqueering and the Autistic expression of pain

Neuroqueering is a liberational practice. It allows the person to express themselves authentically. But what if authentic expression of Self could cost you your life? What if the people observing you are basing their judgements on a majority group that does not express themselves in the same way that you do?

This is why we need to talk about Autistic people and pain. When we express pain, both emotional and physical, we often embody thar experience differently to the neuromajority. Autistic people have a complicated relationship with pain, and for the sake of simplicity, I would like to consider physical pain.

In hospitals around the world, pain is often recorded using numerical and visual scales. These rely on a person being able to articulate the way they are feeling on a numerical scale and be witnessed to display pain visually in a way that marries up to that figure. One might think it’s a simple system, but if you are Autistic it presents a significant challenge.

Autistic people often experience alexithymia. We struggle to put internal sensations into words. We often can’t articulate what we’re feeling to ourselves, let alone a doctor on a numerical scale. At the same time as this, we often do not express pain in the same way as those of a predominant neurotype.

How many of us find paper cuts unbearable while walking around daily experiencing delirium inducing chronic pain? An example from my own life is the 10 hours I spent walking around with a collapsed lung. I was in agony, but I didn’t respond “typically” to that pain, nor could I articulate its severity in a way that made sense to others.

Enter in the era of the neuroqueer. We are witnessing the birth of a post-normal society. This is a world where Autistic and otherwise Neurodivergent people feel more and more like they can embody their experience in a way that means something to them, and not for the benefit of others. This means that modern medicine needs to also evolve.

Unless healthcare professionals familiarise themselves with the Autistic expression of pain, many of us will be failed (or even killed) by a lack of clinical competency. That is what it is. There is no clinical competency that should not, or does not include an understanding or minority groups experiences of pain.

Neuroqueering is a wonderful thing, but it really does shine a light on the failings that befall Autistic people.

David Gray-Hammond 0 Comments
Jan 26 2023
Understanding Autistic mental health in a broader context

We often discuss anxiety and depression amongst the Autistic population. Some such as myself and Autistic and Living the Dream have pushed to get lesser discussed mental health concerns into the zeitgeist, but there is a problem with how it is framed in a more general sense. When most people discuss Autistic mental health, they discuss the individual experiences, I feel it is necessary to look at the bigger picture.

One of the reasons we centre our conversations on individual experiences is because of the medicalisation of acquired neurodivergence. Medical models of psychological wellbeing centre the experience of distress as the defining feature of what is then described as a disordered mind. It teaches is that acquired neurodivergence is the source of our suffering, placing the responsibility on us to adapt to an unchanging environment.

This is where Autistic mental health becomes complicated. In general, Autistic people favour social models of disability and neurodiversity-affirming approaches, and yet we are taught that further neurodivergence is a disorder. It directly conflicts with our understanding of our Self. It partitions off parts of ourselves and teaches us to eliminate them rather than co-exist. What we actually need is to recognise that distress from traditional “Psychiatric conditions” is as much of a reaction to our environment as an Autistic meltdown is.

The environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our responsibility to recover from that. In truth, the responsibility lies with the environmental factors that cause our distress. You are not suffering because of “illness”. You are suffering because the world is not made with your needs considered. When the world consistently abuses us, crosses our boundaries, and fails to meet our needs, we suffer.

Autistic people need to be allowed to co-exist with themselves. We need a world where the experience of distress doesn’t require us to get better but requires the world to do better. Lack of accessibility and invalidation of people’s lived experiences might well be one of the biggest causes of psychological distress in our society.

David Gray-Hammond 0 Comments
Sep 14 2022
Is mental “illness” actually the brain trying to protect itself?

Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.

People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?

Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?

Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.

To me it seems clear where the suffering is actually stemming from, and it isn’t the person.

However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.

What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.

In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.

Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.

So where do we go from here?

We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.

In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.

It’s time to drop the disorder.

David Gray-Hammond 8 Comments
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