Search for:
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.


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

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.


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.

World Autism Day 2023: A reflection on the work still to do

The date is April 2nd, 2023. This means another World Autism Day (part of the wider Autism Acceptance Month) has arrived, and as the month progresses, we will, as a community, share in the triumphs and comfort one another in our losses.

This month can be a bitter tasting pill for many, with World Autism Day representing a day that should be ours. Sadly, it is often claimed by those whose agenda does not align with the very Autistic people that they claim to support. Today, and all of April, for that matter, serves to remind me of the Autistic people who have left us. The ones for whom this world was simply too cruel to withstand. I often see positivity that change is slowly happening; the change isn’t fast enough, there are no acceptable losses on the road to liberation. Every Autistic person we lose is a scar on our history, and an indictment of the world we live in.

Yes, perhaps the days of asylums is coming to an end, but what of the countless Autistic people here in the UK who are locked away and abused in psychiatric institutions? Can we truly say that the asylums are gone when one can be placed into carcerative care, simply for being Autistic and in distress?

What of the CAMHS crisis that has been ongoing in perpetuity? Can we really say that Autistic people are liberated while our children are being denied their identities and/or turned away from help for being Autistic? Every single day, Autistic people are fighting to exist. While the nature of our fight might be becoming less overtly life-threatening, we still have to recognise that our dramatically reduced life expectancy lists filicide and suicide as to of the biggest factors.

Yes, the world is changing, but it’s not changing fast enough.

Speak of normativity and structural oppression to the average person, and you will be met with blank stares or even gaslighting. To create a truly inclusive world we have to start from the bottom up. We have to consider the foundations that our world’s power structures are built upon. You don’t destabilise oppressive regimes from the top, you foment revolution amongst the people it rests upon.

If I can ask one thing of Autistic people this World Autism Day, through out Autism Acceptance Month, and moving into the future; be resolute in your commitment to shifting the views of the masses.

While change at government and legislative level is vital, it ultimately will fail if we do not change the hearts and minds of our similarly downtrodden friends, family, colleagues, and loved ones. We have to recognise that we are all sharing in oppression and that we have the collective force to cut free from the chains of normativity. We can, together, create a neurocosmopolitan society. We can lay a new foundation for those that come after us to build upon.

I am Autistic, I am proud, and I refuse to accept the way that things are.

The politics of existence and the regulation of Neurodivergent experience

For a long time now, Autistic people have been fighting to have the contested title of Autism Spectrum Disorder removed from discourse of medicine. We feel that as an emerging culture, being Autistic is an identity rather than a medical matter. When considering one’s identity, we have to consider all avenues of discourse surrounding it. Today, we’re going to consider politics.

Whether you want to admit it or not, politics is relevant to the lives of every single human. There isn’t a single aspect of human life that doesn’t have an association with beaurocratic regulations and inaccessible power structures. In the case of Autistic and otherwise Neurodivergent people, a unique problem is posed to those in power. For a current system to function, people need to assimilate into normative standards. How can one regulate another’s existence in such a way?

The answer is relatively simple. Psychology. More specifically, psychometry. By quantifying and regulating the expectations for people development and behaviour, you can position those who do not assimilate as outliers. You create a binary of in-group versus out-group. This allows those in power to create a disconnect between the normative world and those who do not fit in.

This is how society oppresses neurodivergent people. We are positioned as less-than-human using psychological metrics that have been arbitrarily created. Once a group has been dehumanised in such a way, it’s easier to make people turn on each other. When positioned alongside the idea of finite resources, we can be viewed as an unnecessary drain on resources rather than humans who have rights. People are taught that more rights and resources for us means less for them.

And so, by quantifying human development and behaviour, governments and authorities have effectively regulated human expression of identity through the politicisation of our very existence. This is why the push to have Neurodivergence depathologised is so important. It’s the first step towards a world in which those in power no longer control how we think, feel, and embody ourselves.

Until such time that this is achieved, we have to make peace with the uncomfortable truth that our identity and the wider perception of it is not a matter of our own choice.

Creating Autistic Suffering: Professionals, why don’t they know?

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

Trigger Warning: Injustice, professionals, Autistic suffering, mentions of theory of mind, weak central coherence, and older autism theory.

We often sit and have conversations about our work. We never cease to be astounded at the lack of basic autism knowledge out in the world. We’re not talking about Theory of Mind or Weak Central Coherence.

You would think after so many years in advocacy we would have become desensitised to it by now. Unfortunately, every day we attend social care meetings, school meetings, meetings with clinical commissioning groups, etc, who are genuinely perplexed by what they call ‘complex presentations’. Let us make it clear, we are not talking about Joe Bloggs off the street, we are talking about those that are considered highly qualified, and are responsible for Autistic peoples wellbeing in one way or another.

This raises the fundamental question, why are these people lacking such basic knowledge as monotropism and double empathy? We are literally talking about consultant doctors, social workers, departmental heads. People with a great deal of power in the lives of their Autistic patients/clients. Yet, whenever we mention the aforementioned theories, or neuroqueer theory, or burnout, masking, shutdown, we are met with blank stares and sometimes even derision. We can never figure out if they think we have come from a different planet or reinvented the wheel.

We take these theories as basic knowledge, however, for the vast majority of ‘autism professionals’ these are radical notions on the fringe of their world. One might ask the question as to why this is, the answer, sadly, is that the system within which they operate is not fit for purpose.

We don’t consider what we do to be ground-breaking. We can never figure out if we are respected or disregarded as being fringe radicals. Some professionals have full-blown identity crises when they encounter Autistic-led theory (yes, there have been tears).

Let us consider the system within which these professionals exist. The external part of the system, which one might consider the world of every day life, is a world of normative violence against those who diverge from the status quo. I’d like to think that no-one enters caring professions to inflict harm on purpose, unfortunately we know this can be the case sometimes. There will always be those within the system who operate with an aggressive disregard for all but their own ego and wellbeing.

Thankfully, we would like to think that the vast majority do not share this overt lack of empathy, and instead inflict harm through a lack of knowledge, these are the people that we can help and work with.

We need to first consider why they have these gaps in their knowledge.

We find this absolutely bewildering, considering the information is readily available from a wide variety of sources. Despite well over a decade of neurodiversity-informed work into Autistic experience, this work has not made it into standard training packages. While we don’t find these theories particularly difficult to understand, it is important to note that we as Autistic people have raging imposter syndrome, and are constantly encouraged to underestimate our own level of expertise and how we are perceived by others in the autism field. So maybe it is complex?

Considering the advent of the internet, and the ability to have an academic library in your phone, or even if you don’t have access to that, there are organisations such as Aucademy (shameless plug) that provide much of this education for free. For us it seems to boil down to three main reasons, but of course as with everything, it’s intrinsically linked and clustered with a whole host of other stuff that creates Autistic suffering.

The first, of course, is the money.

With the recent news of the national autism strategy, and the governments promised investment into this area, it seems that people are very aware of the knowledge gaps and financial issues. Our government in the UK has promised £74.88 million as part of their new policy named “The national strategy for autistic children, young people and adults: 2021 to 2026” (Department for Health and Social Care & Department for Education, 2021), while this could be considered a significant investment, recent figures available indicate that there are over 962,000 people working full time, in state schools in England (Office for National Statistics, 2022), this is exclusive of local authority employees that work directly with children and young people or NHS staff, even if this entire budget was invested in training alone the per head figure would be an offensively small donation at best, with not enough investment to even consider the costs of a trainer, resources, continual professional development, and the time it takes to train people. We could consider it a step in the right direction, we certainly won’t say no to it, but it absolutely does not solve the current crises that the system is facing regarding the care and support of Autistic people.

To summarise, it’s probably a lot cheaper to use the outdated training and save the budget, than it is to pay actual Autistic professionals to teach the new theory.

The second point to consider is the issue of who is providing the training. Who has the knowledge base required to actually train the professionals? The current system seems to operate on the model of ‘the one-eyed king in the land of the blind’.

One study conducted across health, education and care reported ‘the findings expose an acute lack of autism-specific training that has detrimental impacts. At best, this training was based on brief and very basic awareness raising rather than on in-depth understanding of issues related to autism or skills for evidence-based practice.’ (Dillenburger, et al., 2016). There is ample academic evidence readily available that shows education, health and care professionals do not have the knowledge, confidence, or training to work with Autistic people. Research has also found that those with minimal Autism training are then regarded as experts in the field and then become the trainers for the next generation despite the quality of training being severely lacking. This leads us to a position of credibility excess being afforded to poorly trained professionals and perpetuating a never ending cycle (Dillenburger, et al., 2016).

Finally, we have the question, Who defines what is and isn’t expert enough?

Ultimately, there must be more investment in training and development in public sector services so there can be increased expertise and confidence around Autism. We must define a basic national standard for what ‘expert’ is and the training required to meet that standard. Currently, ambiguous definitions place health professionals in a position of potential credibility excess, whereby they are assumed to be ‘expert’ and those receiving support from them may feel unable to challenge or question, this could serve to further exacerbate an already existing power imbalance (Joseph-Williams, N., Edwards, A., & Elwyn, G. 2014).

One might consider that it is time to “throw away the master’s tools” as Nick Walker so eloquently explained in her book Neuroqueer Heresies (Walker, 2021). The current system does not provide the means to overhaul and redesign it, we must look to a future built by those who need the system to survive.

You only have to scratch the surface a little to understand that this issue can’t be solved by throwing money at the situation. The entire system needs an overhaul, from the foundations up.

There is another solution… Listen to Autistic people. Parents are starting to understand, and access resources and community created knowledge (that is lightyears ahead of the academic research). Why are professionals not jumping on this bandwagon with us? No doubt we’ll answer this question in a whole other entry to this series. Models of disability, testimonial and hermeneutical injustice, just a couple of the reasons.

Are professionals at risk of making themselves obsolete? There certainly is a risk of highlighting ineffectiveness in a highly competitive field, is this ego? We’re afraid this conversation will have to be saved for another day. The conversations on Autistic suffering appear to be never ending.

We leave you on this note; “you wouldn’t call an electrician if you had a leaky tap” (Mary Cartilidge, Specialist Independent Social Worker, 2021).


Department for Health and Social Care & Department for Education, 2021. National strategy for autistic children, young people and adults: 2021 to 2026.

Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

Office for National Statistics. (2022) School Workforce in England

Walker, N. (2021) Neuroqueer Heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

Verified by MonsterInsights