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.
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