I recently wrote and published two reports on Child and Adolescent Mental Health Services in the UK and their handling of all things autism. Both reports, drew their data from the CAMHS survey I ran during March. The overall data of these reports was very eye-opening, and quantified an experience that many Autistic people and their families have been highlighting for some time. In particular, I wanted to explore accessibility. This was a significant topic in both reports and presents an issue which needs addressing immediately. Find the two reports link here:

Is CAMHS Accessible for Autistic people and their families?

In the survey, all people responding indicated the following:

• 48.8% Strongly Disagreed that it was accessible
• 22.5% Somewhat Disagreed that it was accesible
• 13.1% Took a neutral position
• Only 15.6% of respondents agreed that the service was accessible

(Gray-Hammond, 2024a)

I found it interesting that the overall results were almost identical to the results where only Autistic people answering regarding Autistic children were analysed. It suggests to me that regardless of whether parents or carers are Autistic or not, CAMHS is not an accessible service.

“Don’t Bother”: The advice for families newly accessing CAMHS

When asked what advice they would give people accessing the service for the first time, there was an almost unanimous chorus of “Don’t Bother” and “Go Private” (Gray-Hammond, 2024b). The sentiment behind bother of these statements is understandable, but perhaps not practical. Failing to access support when your child needs it is likely to result in safeguarding referrals regardless of the reasons behind it. Going private is also highly impractical given the expensive nature of such a route.

CAMHS have created a situation where parents and carers face a choice between financial destitution or safeguarding procedures enacted against them. Neither of these things are the parent carers fault. Services have created a culture where in almost any kind of struggle in a child now falls into the remit of social services (another service that is overwhelmed and under-resourced).

What are the barriers to accessibility?

Babalola et al (2024) discuss how professional knowledge, and systemic issues such as lack of clear pathways and information present barriers to healthcare for Autistic children. This was reflected in the quantitative report that found 58.6% of respondents disagreed that CAMHS understand Autistic experiences alongside the aforementioned issues with CAMHS being understandable in terms of access (Gray-Hammond, 2024a).

A report by the Education Policy Institute (Crenna-Jennings & Hutchinson, 2020) cite eligibility criteria and waiting lists as significant barriers to accessing CAMHS for the general population. This is again refelcted in the qualitative report that highlighted experiences of Autistic people and their families goin through long wait times and being turned away for being Autistic (Gray-Hammond, 2024b).

Concluding Thoughts On CAMHS Accessibility

Regardless of whether parents and carers accessing CAMHS for their young person are Autistic or not, they are having quite similar experiences. They are left confused, scared, and possibly facing safeguarding measures. We also can not overlook the financial impact for families that feel forced to access private mental health care. This should not be a fight which only Autistic people are fighting. As cost increases and resources decrease, more and more groups will be impacted by these issues. Autistic people are the canaries in the coal mine in this respect: We are telling you that something potentially deadly is happening.

In a modern society, no one should have to face these things as realities of needing support for their mental health. Mental health care should not be causing collateral damage and worsening the situation. Much needs to change, and the only way we will achieve that change is by being vocal about this. Silence and neutrality has never helped the oppressed have their rights met. So please, make some noise.

References

Babalola, T., Sanguedolce, G., Dipper, L., & Botting, N. (2024). Barriers and Facilitators of Healthcare Access for Autistic Children in the UK: a Systematic Review. Review Journal of Autism and Developmental Disorders, 1-29.

Crenna-Jennings, W. & Hutchinson, J. (2020) Access to child and adolescent mental health services in 2019. Education Policy Institute. https://epi.org.uk/wp-content/uploads/2020/01/Access-to-CAMHS-in-2019_EPI.pdf

Gray-Hammond, D. (2024a). Report on Quantitative Findings of a Survey of Autistic experiences of Child and Adolescent Mental Health Services. DGH Neurodivergent Consultancy. https://neurohubcommunity.org/wp-content/uploads/2024/04/CAMHS-Report-2024.pdf

Gray-Hammond, D. (2024b). Report on Qualitative Findings of a Survey of Autistic experiences of Child and Adolescent Mental Health Services. DGH Neurodivergent Consultancy. https://neurohubcommunity.org/wp-content/uploads/2024/04/CAMHS-Report-2024-2.pdf