Child and Adolescent Mental Health Services (CAMHS) are known for failing to support the mental health of Autistic children. Unfortunately this is not the only issue with such services, they are often responsible for the assessment and diagnosis of neurodivergence such as autism or ADHD. Within the context of autism, there have been numerous reports of young people being denied diagnosis due to a mismatch of understanding between professionals involved in the process. While school professionals will often hinder the process, CAMHS are not immune from also presenting barriers. In this article I intend to consider the triple-empathy problem (Shaw et al, 2023), alongside the concept of neurodivergence competence (Gray-Hammond and Adkin, 2023) and how an understanding of the two can improve access to diagnosis.
What is neurodivergence competence?
Neurodivergence competence can be understood as a form of cultural competency where in a person has an intimate understanding of neurodivergent ways of communicating, processing, displaying emotions, and socialising (this is a non-exhaustive list). I view it as being particularly similar to the pillars of expertise as stated by Aucademy.
While the pillars of expertise require oneself to be Autistic in order to truly have expertise in the field of autism, neurodivergence competence is geared more toward the professionals working with Autistic people. It requires professionals to have an intimate knowledge of the growing Autistic culture and how that plays out in the lives of Autistic people.
What is the triple-empathy problem?
The triple-empathy problem is an expansion of Milton’s (2012) double-empathy problem. While the double-empathy problem states that differences in cultural perspective prevent effective empathy and communication between Autistic and non-Autistic people, the triple-empathy problem (Shaw et al, 2023) adds a third dimension. As well as the Autistic to non-Autistic barrier, we also have to consider professional to non-professional differences in understanding and culture.
To consider it another way, an Autistic person being treated by a non-Autistic healthcare professional also has to contend with the communication barriers presented by the differences in understanding between non-professionals and professionals. This serves as an effective barrier to a great deal of professional support and goes someway to explaining why healthcare professionals in particular report having less favourable attitudes towards Autistic patients (Corden et al, 2021).
How many Autism diagnoses does CAMHS make?
While there is a lack of data around the number of diagnoses specifically given by CAMHS, there is enough data to get a general idea. According to NHS Digital, as of June 2022 there were just over 122,000 people with an open referral for an autism assessment in the UK. The median age for diagnosis is around 5 years and 7 months with diagnoses generally declining as age increases (Gray-Hammond, 2023). It is fair to assume that a considerable portion of this cohort of 122,000 open referrals would fall within the age of 5-19 years and therefore potentially be assessed by CAMHS. Despite this, many parents of Autistic children report immense difficulty in getting their child diagnosed (Crane et al, 2016).
What is preventing CAMHS from effectively diagnosing autism?
In my opinion, CAMHS professionals lack both neurodivergent competency as well as over-estimating the knowledge of parents with regards to knowledge that CAMHS professionals take for granted. Parents may not be aware of unhelpful or stigmatising stereotypes that CAMHS professionals potentially harbour. Alongside this, CAMHS professionals do not have a good understanding of Autistic culture and experience. This has the potential for a breakdown in communication between Autistic children and their parents (who themselves are often Autistic), and professionals. In the absence of effective communication, one might wonder; how can an accurate diagnosis be given?
Compounding this issue is the aforementioned lack of neurodivergence competence among professionals. Given that diagnoses are often assessed by small numbers of professionals with limited knowledge of autism from the outside, and almost know lived experience of autism itself. They tend to lack any knowledge co-created by the Autistic community, and will often invalidate Autistic people who express such knowledge. This again presents a significant barrier to effective assessment and diagnosis.
How can CAMHS improve the diagnostic process for autism?
One potential improvement that has been suggested is the amalgamation of Child Development Teams and CAMHS into a singular, integrated, neurodevelopmental pathway (Male et al, 2020). Such diagnostic pathways would take a multidisciplinary approach to children and young people. Having a broad range of specialties would allow for a more nuanced assessment of a child’s needs while potentially offsetting the lack of cultural competence that is so prevalent among professionals. However, the matter still stands that in the absence of neurodivergence compentency, there is still a huge potential for the triple-empathy problem to hamper communication and effective assessment.
In order circumvent these issues, there needs to be greater transparency on the knowledge that professionals bring to the assessment. Professionals should also be required to spend time within Autistic cultural spaces. To be direct, professionals are the demographic that need to cross the divide. Autistic people and their families are expected to manage their own oppression and discrimination far too often in life, and as such it is important that pressure is not applied to make them do the same again.
Early diagnosis and appropriate support can be life changing for Autistic children and young people. It is time they had access to it.
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References
Corden, K., Brewer, R., & Cage, E. (2022). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people. Review Journal of Autism and Developmental Disorders, 9(3), 386-399.
Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153-162.
Gray-Hammond, D (2023). The shocking state of autism diagnosis in the UK. emergentdivergence.com
Gray-Hammond, D., & Adkin, T. (2023). Creating Autistic Suffering: Autistic safety and neurodivergence competency. emergentdivergence.com
Male, I., Farr, W., & Reddy, V. (2020). Should clinical services for children with possible ADHD, autism or related conditions be delivered in an integrated neurodevelopmental pathway?. Integrated Healthcare Journal, 2(1).
Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.
Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 13623613231205629.
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