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Sep 11 2023
CAMHS have been contributing to the death of Autistic young people for over a decade

I was recently sent a BBC article regarding multiple deaths of Autistic young people occurring despite coroners issuing “prevention of future death” (PFD) notices. These notices are only issued when a person’s death is the result of systemic failings and are issued when changes need to be made in order to prevent future deaths. The BBC article looked through 4,000 PFD notices over the past 10 years, and what they found is harrowing.

What is the risk of suicide amongst Autistic young people?

According to the Royal College of Psychiatrists, Autistic children in the UK are 28× more likely to think about or attempt suicide compared to their neurotypical peers. This could be for a number of reasons, but I believe that trauma plays the biggest role in this. Autistic young people and adults experience traumatic events at a higher rate than non-Autistic people. From communication invalidation, to sensory trauma, even good old fashion gaslighting. Autistic people have a rough experience of the world.

It is unsurprising then that Autistic young people, whome some research estimates 94% are victims of bullying, so regularly experience such an inordinately high rate of suicidal ideation and attempts. We also have to consider that Autistic people often exist at the intersections of race, sexuality and gender, other disability, and class. As a result of this, their mistreatment may be compounded by multiple forms of marginalisation.

Why are CAMHS important to preventing the deaths of Autistic young people?

As mentioned previously, Autistic children and young people are significantly more likely to experience suicidal ideation or attempts. Where their is suicidal ideation, there is often psychological distress. I’m fact, according to the Mental Health Foundation; 7 in 10 Autistic people have a diagnosable mental health concern. From this, I infer that over two-thirds of Autistic children and young people need support from CAMHS.

Despite this very high rate of suicide and suicidal ideation, and mental health concerns, only around 10% of patients under CAMHS are Autistic. This represents a large disparity between the accessibility of services for Autistic and non-Autistic groups. This disparity is indicative of wider systemic failings in the support of Autistic children and young people and is supported by the BBC’s findings in PFD notices.

How are CAMHS failing Autistic children and young people?

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.

Quote from the above linked BBC article

The BBC investigation found 51 prevention of further death notices that pertained to the deaths of Autistic children and young people. 51 may not sound much amongst a group of 4,000, but it is. According to the National Autistic Society, over 1 in 100 (1%) people in the UK are Autistic. Of the PFD notices investigated by the BBC, around 1.3% were Autistic. This indicates to me that Autistic people are better represented in deaths regarding systemic failing than they are in the general population.

The screenshot below elaborates on some of the reasons found that control used to the loss of Autistic lives:

The five key concerns identified by the BBC as repeated issues in the deaths of Autistic children and young people, read article here.

What does this mean for CAMHS and Autistic wellbeing?

As I have discussed in previous articles about CAMHS; it is not enough to simply get through the doors at these services. We need them to be restructured and invigorated with new life. In their current form, CAMHS is not fit for purpose. Too many Autistic children and young people are losing their lives, and those lives are at the feet of a CAMHS that has time and again failed to do what it exists to do.

Autistic children deserve the same chance at a happy and meaningful life as any other child. CAMHS are not enabling that.

Click here to sign the petition about CAMHS

Click here to see details of the CAMHS protest at Downing Street

David Gray-Hammond 0 Comments
Sep 4 2023
Autistic people, energy accounting, and boundaries

In my day job, I talk to a lot of Autistic people. I mean a lot of Autistic people. One of the most common questions I am asked is how to better account for limited reserves of energy and cognitive resources. The answer sounds deceptively simple, but in reality, it can be a really complicated practice. I’m talking about the creation and maintenance of boundaries in Autistic people’s lives.

Why are boundaries so complicated for Autistic people?

As Autistic people, we have grown up in a world that doesn’t care for our boundaries. We are taught from a young age that our needs and wants do not matter and that we should live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of intergenerational trauma.

For many Autistic people, our earliest memories are of people denying our sensory needs, invalidating our communication styles, ignoring the very things that would help us participate more equally in a world not designed for us. This means that by the time we reach adulthood, we are much less likely to be willing to maintain our own boundaries.

What does ignorance of boundaries teach Autistic people?

Autistic people are often accused of overstepping boundaries, especially in childhood. I would point out to the casual observer that we expect Autistic children to give more to society than society is willing to reciprocate. We teach Autistic children that boundaries do not matter and then penalise them for lacking awareness of social niceties.

There is then the wider issue of Autistic wellbeing. Adults with poorly maintained boundaries will inevitably experience lower levels of wellbeing than people who are able to sagely self-advocate. Autistic people often spiral in and out of burnout, unable to sagely set boundaries that are vital to their energy accounting.

How does ignorance of boundaries effect Autistic identity?

One aspect of the importance of boundaries that is rarely talked about, but very important, is that of its effect on our sense of identity. In my own life a lack of clearly defined boundaries kept my queerness closeted for decades. Because I was not able to advocate for.myself to others, I could not do the internal advocacy work I needed in order to identify my queer identity.

No one talks about it, but when you have grown up being constantly invalidated, you absolutely have to advocate to yourself. We have to battle and dismantle the internalised ableism and normativity that has kept us trapped within societies definition of “us” rather than exploring what the means to ourselves.

How can Autistic people begin to maintain boundaries?

Autistic people can begin to identify and maintain boundaries through self-exploration. For some, this may be an isolated affair, while others may engage with peer mentorship. This is where a sense of AuSociality becomes important. By socialising Autistically with Autistic people, we can begin to learn what our Autistic profile is and, therefore, what our unique set of strengths and struggles are.

When we know who we are and what we need, we are in a stronger position to begin self-advocacy to the wider world, and subsequently, we can begin to improve our sense of wellbeing.

David Gray-Hammond 0 Comments
Aug 21 2023
Here are the reasons why CAMHS endangers Autistic children

If you believe that there are no issues with the way that Child and Adolescent Mental Health Services (CAMHS) treats UK Autistic children and young people, I would direct you to take a look at the ongoing petition that has over 200,000 signatures. That’s a fifth of a million people who have witnessed the failures and harms exacted on Autistic children and young people by a service that is meant to save them.

Something that I keep coming back to is that CAMHS as a service needs to do more than open it’s doors to our children. In it’s current state, CAMHS could do more harm than good. I very strongly believe that in order for CAMHS to be a fit place to support Autistic people, they need to change on a fundamental level. In light of this, here are some of the issues within the current system.

Safeguarding instead of mental health care

One of the most common stories that we hear surrounding CAMHS is families of Autistic children finding themselves being referred to safeguarding services within their local authority (LA). This has become a prevalent issue that can make accessing services feel hostile and dangerous. Given that parents of Autistic children are often disabled themselves, it seems pertinent to note the increased rate at which they experience Institutionalised Parent/Carer Blame (IPCB).

This highlights a significant issue with the move over to Single Point of Access (SPoA) referrals. There can be significant disparities from area to area in triage outcomes meaning that Autistic young people and their families often do not get access to the services they need.

Lack of knowledge around Autistic and neurodivergent experience

I have spoken at length about the impact that a lack of cultural competency among professionals can have. In particular I would highlight this article I co-authored with Tanya Adkin. It is impossible for professionals to be safe for Autistic young people while they are lacking essential knowledge that can only be found by engaging with the Autistic community.

Many of the professionals within CAMHS are working from outdated and stereotyped knowledge around what autism looks like and how best to support Autistic people. This lack of knowledge can and does endanger the health and wellbeing of our children and young people. It highlights a level of disdain for minority communities when they ask for professionals to learn from them and not from an outdated textbook.

Poor handling of children vulnerable to exploitation

This is a significant issue for Autistic young people. In particular I think of the case of Ben Nelson-Roux. This young person died a victim of exploitation due to multi-agency failure (as documented in the linked article). Had CAMHS had a better professional practice regarding neurodivergence and exploitation, his story may not have ended in tragedy.

We have to highlight here the power that CAMHS have in cases such as these. When CAMHS fail to take criminal exploitation seriously, it has knock on effects for the support they receive from all services involved. CAMHS as a whole needs to be significantly more skilled in this area due to it’s prevalence among Autistic demographics.

Defensive Practice

Defensive practice occurs most commonly when services are more concerned with metrics than people. Within CAMHS this often manifests in refusals for support, and labeling service users as “not engaging” when inappropriate approaches are used for neurodivergent young people.

This might also manifest as the overuse or inappropriate use of restrictive practices and deprivation of liberty. Again, this tends to arise from a need to meet targets and achieve certain metrics rather than meaningfully support young people.

Gate-keeping of services

This one is the whole reason we’re here, and fits in with the aforementioned defensive practice. When you don’t have the skills to support a neurodivergent person, you simply refuse them access to services. This gate keeping is deadly for some young people, and trust policies that allow for it to happen play a role in the disturbingly elevated suicidality rate for Autistic young people.

Autistic people experience a great deal of psychological distress in a world that is actively hostile towards them, and yet CAMHS fails to provide them with meaningful support. In many cases they fail to provide any support at all. If we want to see an improvement in the metrics that matter (for example, measure of quality of life), much of the current mental health system in the UK needs to be restructured. This will not be a quick campaign, but it will be effective.

Please support the ongoing campaign around CAMHS and Autistic young people by signing this petition and attending this protest.

David Gray-Hammond 0 Comments
Aug 19 2023
Marginalised groups should not be responsible for ending stigma

When we think of stigma, we often think of awareness campaigns and personal disclosure of our struggles. On the face of it, these appear to be helpful in stigma reduction. However, as with all things like this, it is not nearly as simple as that. Autism has been the focus of many stigma reduction campaigns, but people are rarely Autistic as a standalone identity, and there are (more often than not) multiple marginalities within Autistic lives.

Autism is not the only sources of stigma in neurodivergent lives

When considering my own experience, one identity of mine that is particularly relevant to this conversation is Schizophrenia. Psychotic disorders have been positioned as the most “dangerous” of mental health concerns. People assume a poor prognosis with a high potential for violence.

Schizophrenia, in my opinion, is a good measure of saneism and ableism in society. Despite Schizophrenic people only having a modestly increased risk of violence, the media fails to report responsibly. Nuances such as the socioeconomic factors of violence in this population are rarely accounted for. In the same way, much of the stigma surrounding neurodivergence and other marginalised identities is driven by poor understanding of colonial oppression and sloppy reporting by journalists. When considering the sources of stigma in a person’s life, we have to consider intersectionality and minority stress.

Individualism and the stigma surrounding neurodivergence

When considering the role of individualism in the perpetuation of stigma surrounding neurodivergence, we have to first understand the role of psychiatry. The field of psychiatric medicine centres most neurodivergence ad “mental illness”. It places the issue within the body of an individual and requires them to “recover”. This individualisation is responsible not just for the coercion that occurs within the psychiatric profession. It is also responsible for the use of quack cures such as MMS and chelation “therapy” that do a great deal of harm.

The ableism and sanism that surround neurodivergence means that we are often coerced into harmful “treatment” or abused by those closest to us. We are dehumanised by stigma and forced to endure a world that views our existence as an abberation rather than a natural part of human diversity.

Why is it wrong to expect victims of stigma to tackle their own stigma?

When we consider marginalised groups, we have to consider that, for most of us, dismantling stigma is usually an expectation of free labour. Far too often, we are expected to expose the most vulnerable parts of ourselves to a world that, in most cases, will respond with vitriol. Raising awareness through vulnerability can be life threatening for many of us.

We also have to note the effect of privilege in stigma reduction efforts. White people such as myself are better able to expose the less acce0ted parts of themselves. If a BIPOC Autistic or Schizophrenic (considering my own neurodivergence) person were to lay bare their most hidden parts, their life could be endangered. For me, the stigma I face is dangerous, but not nearly as life-threatening as that of my further marginalised neurokin.

Conclusion

Marginalised people are left to raise awareness in a world that does not want to listen. It should not be us doing the work to dismantle stigma. Instead, those perpetuating it should be practising enough introspection to realise the conditioning that our neoliberalism world has used to dehumanised people such as myself. The expectation that we will do the work is fundamentally flawed in a world that does not care enough to practice insight.

Until such a time that wider society is ready and willing to see its own role in our oppression and marginalisation, we will continue to be mistreated. It should not be our job to tackle structural oppression while also trying to survive it. That is what most of us are pouring our energy into; survival.

David Gray-Hammond 0 Comments
Aug 14 2023
How CAMHS tier system obstructs Autistic young people from accessing support

Child and Adolescent Mental Health Services (CAMHS) have, for a long time, failed to provide support to Autistic children and young people. When it comes to autism, there is perhaps no service more infamous for it’s failures than CAMHS. Despite this, every year more and more Autistic people try in vain to access the support they are legally entitled to, often having their situation made worse in the process.

The CAMHS Tier System

CAMHS is modelled on a system of tiers, with tier 1 being at the bottom of a pyramid that grows to tier 4.

healthyyoungmindsinherts.org.ukhttps://healthyyoungmindsinherts.org.uk

Tier 1 is where most people enter the system. They approach GP’s (for example) because their mental health is declining. This is where one of the key issues can first be witnessed. Diagnostic overshadowing.

What is diagnostic overshadowing?

Diagnostic overshadowing refers to a type of medical failure where a healthcare professional attributes a physical of mental health concern to a patients pre-existing diagnosis (in this case, autism). The Royal College of Nursing goes into more depth about it here.

Within this context, a GP may refuse to escalate a young person’s position within the CAMHS tier model because they believe, for example, that their anxiety is “a part of their autism”. Diagnostic overshadowing remains a significant issue not only because it obstructs pathways into support but also because it obscures the ability of researchers to investigate co-occuring mental health issues in Autistic people.

Tier 2

Tier 2 involves access to early help services, but for a lot of Autistic people, this looks like safeguarding concerns. Rather than provide mental health support, we enter into a world of parent/carer blame and systemic hostility. It is because of these institutional practices of moving the goal posts that so many Autistic people skip right over tier 3 and enter into tier 4 care.

Inpatient Treatment

I title this section with more than a hint of irony. As I mentioned in a previous article, 93% of under 18’s under inpatient treatment are Autistic, despite the Mental Health Act code of practice stating how inappropriate this particular setting is. The irony comes from referring to it as treatment. For many Autistic people, being an inpatient can mean spending years locked away from society for no better reason than the lack of appropriate resources in the community. Let us not forget the horrific abuses that Autistic people have experienced in inpatient settings.

How do we fix this?

Meeting a young person’s needs at tiers 1 and 2 or having more specialised resources available at tier 3 could help to mitigate these failures. Having appropriate knowledge within tier 1 services as well as less emphasis on safeguarding in tier 2 could have a significant positive impact on the wellbeing of our Autistic young people.

Tier 3, in particular, could benefit from services that specialise in Autistic presentations of mental health. I would argue that tier 3 should not just involve child psychiatry but also implement a roll out of peer mentoring programmes that employ knowledgeable Autistic people to work with young people around understanding their strengths and struggles, and subsequent boundaries. Until these things are done, CAMHS will remain unfit for purpose.

Click here to sign the petition regarding CAMHS refusal to see Autistic young people.

David Gray-Hammond 0 Comments
Aug 5 2023
CAMHS misdiagnosed my Autistic burnout and it endangered my safety

For anyone who has been following my writing recently, you will be aware that there is an ongoing campaign regarding the failings of Child and Adolescent Mental health Services (CAMHS). In particular, there has been a great deal of discussion around the fact that they will often refuse to see Autistic children and young people. Beyond this though is a pervasive lack of skill and competence among professionals working Autistic service users.

CAMHS failures don’t rest solely in the hands of under-trained staff. To understand the issues that present themselves, we have to consider the lack of resources and funding.

“There remains a clear disparity between adult and child mental health spending in England. CCGs spend
an average of 12.9% of their overall allocation on adult mental health services – approximately 13 times
more than on [children and Young People’s Mental Health Services]”

Office for the Children’s Commissioner (2019/2020 report)

This disparity means that staff do not have access to a robust budget that allows for in depth training on emerging knowledge around the Autistic experience. Much of the training that staff have access to is horribly outdated and biased towards deficit-based understandings of autism. Of course we have the Oliver McGowan Mandatory Training, but I am yet to find an Autistic person who thinks this training goes far enough or demonstrates the truly dynamic nature of being Autistic.

Autistic Burnout and CAMHS

When considering the understanding that CAMHS staff have around Autistic experience, perhaps one of the most misunderstood aspects of autism is that of Autistic burnout.

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”

Raymaker et al (2020)

Burnout in Autistic people is often misunderstood as looking like depression, but like many aspects of being Autistic, it is dynamic and diverse in it’s presentations. Trying to quantify burnout within observational methods is like trying to quantify snowflakes. Each instance is unique in it’s own way, even though they all have some general similarities. Sadly, CAMHS staff often don’t even know burnout is an issue for Autistic people, let alone what to look for or how to support children and young people through it.

My own experience with CAMHS

Aged 15, I found myself no longer to attend school. After a series of traumatic life events, my mother found me sat in our living room rocking back and forth, unable to speak. I have written about how CAMHS nearly killed me, but there is more to that story. CAMHS had me labelled a school refuser. They failed to recognise that I was experiencing Autistic burnout. When they should have been supporting me, they instead empowered an abusive school environment.

I was forced to return to the same school environment that had destroyed me. I was bullied by staff and students alike. I dragged myself through my final months in that school, leaving with few GCSE’s and a distinct lack of trust for education and mental health professionals. CAMHS failure to support me as an Autistic person in burnout led to my own suicidality, self-harm, and ultimately addiction and psychosis. CAMHS has the opportunity to provide meaningful crisis intervention, but due to their lack of knowledge labelled me as depressed and difficult.

Autistic burnout is not depression

Admittedly, on the surface, burnout and depression can look similar. The withdrawal from others coupled with loss of interest in previously enjoyable activities are hallmarks of both in the standard sense. However anti-depressants will not end Autistic burnout any more than water will extinguish the proverbial chip-pan fire. When staff labelled me as depressed instead of burnt out, they signed me up for decades of medication and gave my school the power to drag me back into an environment that was killing me.

At a time when I needed support from a community of my peers, I couldn’t even access an accurate diagnosis, let alone discover the huge community of others like myself.

The current state of CAMHS

“CAMHS did not have the knowledge or the skills to identify or treat mental health problems in [Autistic children].”

Read & Schofield (2010)

If CAMHS staff are unable to accurately identify Autistic burnout, it is likely that many children and young people will receive incorrect diagnoses and subsequently inappropriate support. It’s not uncommon for Autistic people to recieve diagnoses of personality disorders and bipolar conditions; this could be because of a disregard and lack of knowledge around atypical burnout, and the diverse range of burnout presentations in general.

Not only are Autistic people being turned away from support, those who make it through the door are actually being made worse. This is not how Autistic people experience mental health support. Children and young people are building towards an adulthood that will already be complicated for them, why do we set them up to experience an even harder time? Our children are dying at the hands of CAMHS.

Please sign this petition to help make a difference.

Sign The Petition

To learn more about Autistic burnout, please sign up for this burnout seminar by myself and Tanya Adkin (August 9th 2023 @ 7pm), free to Autistic parents.

Sign up for burnout seminar
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 0 Comments
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 19 2023
Spectrum 10k and Autism Speaks are linked: here’s the things that link them

Autism Speaks are widely detested within the Autistic community. Since their inception, the horrendous “I am autism” commercial, and their ongoing attempts to eradicate autism and Autistic people; they have demonstrated themselves as an organisation that is not an ally to Autistic people. Spectrum 10k has revieved a similar reception from the Autistic community. It seems requesting the DNA of 10,000 Autistic people for “definitely not eugenics” reasons (but they can’t guarantee others wont use it for eugenics) has quite predictably upset far more than 10,000 Autistic people.

In a new and interesting development, activist and blogger Fierce Autie has made a connection that we all suspected might exist, but never had any tangible proof of. Now, thanks to the work of this activist, we may well have our connection. Link to their post below:

There is a Connection between Spectrum 10K and Autism Speaks
Fierce Autie’s blog post revealing the connection between S10k and Autism Speaks

There are two points to things to look at here, The Wellcome Trust and the Autism Genetic Resource Exchange (AGRE). Both have ties to Autism Speaks.

What is The Wellcome Trust?

In their own words:

“Wellcome improves health for everyone by funding research, leading policy and advocacy campaigns, and building global partnerships.

Collaborative research that involves a diverse range of people from different fields of interest is key to progress in health science – and to achieving our aim of fostering a healthier, happier, world. But many researchers feel they lack the time, finances, and creative environments they need to make breakthroughs.  That’s why we’re committed to funding ambitious global research projects that will transform our understanding of life, health, and wellbeing.”

The Wellcome Trust “what we do” page

For the purposes of Spectrum 10k, what you need to know is that The Wellcome Trust is the primary sponsor of this £3 million research project. Aside from comments on how that £3 million could have been better spent, this trust is deeply connected to S10k.

What is interesting as you will see within Fierce Autie’s blog post is that The Wellcome Trust received part of a $1.6 million grant from Autism Speaks to fund research into diagnosis and screening methods in moderate to low income countries. While we can not definitively say one way or another that money from Autism Speaks ended up in the Spectrum 10k banks account, what we can say is that The Wellcome Trust has direct links to Autism Speaks.

What is AGRE?

Again, in there own words:

“The Autism Genetic Resource Exchange (AGRE) is a gene bank housing data and biomaterials from over 2000 AGRE families, most of whom have two or more children on the autism spectrum.  Although for over a decade AGRE has collected most of these materials in the family home, we have now moved into the role of a Data Coordinating Center (DCC), receiving data and biomaterials primarily from outside researchers.  As a DCC, AGRE will continue to expand its resource by collaborating with researcher institutions who are working directly with families who have children on the autism spectrum.  We will further in our mission to accelerate the pace of autism research by enlarging our resource and continuing to make it available to autism researchers around the world”

Autism Speaks “AGRE for Families” page

The Health Research Authority (HRA) states the following about S10k:

“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks. As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”

HRA “Spectrum 10k update” (May 2022)

AGRE represents an undeniable link to Autism Speaks and is a strong indicator that this project may share goals and views with them (in my opinon).

What does this mean?

These points come together to show us that once again we have been lied to. Fierce Autie’s blog post shows tweets from Spectrum 10k’s twitter account denying any connection to Autism Speaks, while they full well know they are connected. Yet again, the significance of our joint statement is brought to light. What’s more, the fact that we have been ultimately ignored by the HRA shows us that they are closer to Autism Speaks than they are to the Autistic community.

If you needed anymore reasons not to give them your DNA, here it is.

Read more on the Spectrum 10k page of this website.

David Gray-Hammond 0 Comments
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