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.
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.