CAMHS: Coping with parent carer burnout
In our campaign against Child and Adolescent Mental Health Services (CAMHS) failures of Autistic children, we have discussed at length the harm such failures can do. It is important to recognise though that parent carers have a limit to what they can cope with and will often struggle deeply as well.
In particular, we have to consider the impact of parent carer burnout and how this can further complicate matters. We have to consider that parents of Autistic children are more likely to be Autistic themselves; research suggests heritability rates of 40-80% (Rylaarsdam & Guemez-Gamboa, 2019). We also have to consider that previous generations may have experienced under-diagnosis of autism (O’Nions et al, 2023), meaning that those parent carers may not be aware of their own Autistic needs.
How do CAMHS cause parent carer burnout?
Systematic denial of services and discrimination against our children creates an environment within which we are solely responsible for our children’s wellbeing. While it can be argues that families should take a leading role in the wellbeing and development of children, services like CAMHS exist because we can’t accommodate every need that a child has. No matter how hard we try, we can not shield our children from the negative aspects of the world, and so services exist to help us make reparation when the damage is caused.
By placing the role of therapist, doctor, and support worker onto parents, we have placed them in responsibility for aspects of their child’s development that no one could reasonably expect them to cope with. Ardic (2020) found a strong relationship between satisfaction with social support and the level of parental burnout experienced. We also can not ignore that regardless of diagnostic status, parent carers are likely to experience similar challenges with professionals and the CAMHS process as their children. The service is not just incompatible with Autistic children, it is discriminatory towards Autistic parent carers as well.
What does parent carer look like in the context of CAMHS?
Meerkat Mode
Adkin (2023) introduces the concept of meerkat mode. It is a colloquially accessible term for a state of hypervigilance, decreased sensory and emotional regulation, and seeking of hyperfocus. In particular, it is positioned as a feature of AuDHD (Autistic and ADHD) burnout. Within the context of CAMHS, this looks like parent carers making numerous attempts to contact services, and experiencing decreased regulation and subsequent rationality with each time they are pushed back. While this behaviour is often seen as a problem with the family, it should be noted that this is a logical consequence of desperation while trying to support a child in the absence of services.
Reduced engagement with professionals
For some parent carers, successful engagement can actually decrease over time as failures continue. Families can experience a level of futility when faced by services that constantly negate the building of trust. This is particularly problematic because it can impact upon the child or young person’s engagement with services. Children often take the lead from their family, and if caregivers don’t see any point in engaging, it’s likely the child also will not see the point.
Decreased emotional wellbeing and mental health problems
Research suggests that as many as 79% of parents with a child under CAMHS experiences a mental health issue (Campbell et al, 2021). In my own opinion, this can be linked to the experience of parent carer burnout in families of Autistic CAMHS patients. Not only are they coping with the day to day challenges of Autistic family members living in a world not designed for them, they are dealing with systemic discrimination and often professional hostility. The crisis in CAMHS is further contributing to the mental health crisis in adult systems.
What are the outcomes of CAMHS causing parent carer burnout?
Safeguarding concerns
Gatsou & Yates (2016) highlight the impact of parental mental health issues on the wellbeing of children and young people. The inference that can be made is that parent carers who are burnt out from dealing with CAMHS may then have this exacerbated by referral to safeguarding services within local authorities. Safeguarding services are another area that has faced criticism with the Autistic community for failing to adequately engage with Autistic families.
Institutionalised Parent Carer Blame
Disabled parents are more likely to experience the institutional practice of shifting blame for failures off of services and onto parent carers (Clements & Aiello, 2021). This in particular is done via the inappropriate use of safeguarding procedures. It can range from the use of parent-focused interventions all the way to accusations of Fabricated or Induced Illness (Gray-Hammond & Adkin, 2022). Such practices further compound parent carer burnout via the proliferation of bureaucratic processes and threat of court proceedings.
Family breakdown
Parent carer burnout can present a risk of family breakdown, and in particular, removal of children. This results in Autistic children becoming “looked after children” within the care system. Once in this system parent carers and the children must deal with increased risk of adverse outcomes, and in particular, instability of placements for the child (McAuley & Young, 2006). This compounds parent carer burnout and risks escalation in the mental health difficulties faced by Autistic children and young people for whom stability is paramount.
Suicidality
Further to the under-reporting of death by suicide in children (Gilmour, 2021), there is singificant under-reporting of adult suicide deaths for parents involved in the CAMHS process. Parent carer burnout has been associated with variable attitudes towards suicide, with female caregivers the most impacted (Chiang et al, 2015).
It is reasonable to infer that caring for an Autistic and suicidal child, in the absence of meaningful support from CAMHS, may increase suicide risk in the parents. Given that Autistic children are 28 times more likely to think about or attempt suicide, this presents a significant risk to the family unit (Gray-Hammond, 2024). We also can not ignore that with many parents likely Autistic, Autistic people represent 11% of all suicides in the UK (Gray-Hammond, 2024).
How can comes reduce the burden of parent carer burnout?
Carers assessments
Parents of disabled children are entitled to carers assessments (Care Act, 2014). There is limited information about how frequently carers assessments are given to parent carers of Autistic children, but anecdotally, it is not a frequent practice and often requires professional advocacy. CAMHS could reduce the stress on families by ensuring that all immediate family members are given a carers assessment (or young carers assessment where applicable) to help them get support with caring for the Autistic child. The challenge with this is the ongoing crisis of resources within social care settings that needs to be addressed for this to be fully effective on a wide scale.
Mental health support for parent carers under CAMHS
Families of Autistic people in crisis are often left to navigate their own mental health with little to no support or oversight. Introduction of service provision that can support parent carers may significantly reduce experiences of burnout for them and mitigate some of the risk of negative outcomes. One might be tempted to point to general adult mental health services, but these are also oversubscribed and often lack the training required to support adults that are highly likely to be Autistic and/or ADHD themselves.
Autism and ADHD assessment for parent carers under CAMHS
Given the high rates of heritability and the positive impact of diagnosis (Huang et al, 2023), it seems logical that parents of Autistic children and young people should be referred for assessment themselves. Identification of neurodivergence can significantly empower the parent carer and allow them to better advocate for themselves and their child within the CAMHS system.
Signposting to community and peer support
This is something that could be done immediately. Services could collate lists of peer communities that are able to support parent carers and provide them with information and emotional support. Peer support may not only fill gaps in services but also offer job opportunities to Autistic people who have historically experienced low employment rates (Shea et al, 2024).
CAMHS and parent carer burnout- A conclusion
CAMHS presents a real and very significant threat of parent carer burnout and it’s associated negative outcomes. Service providers need to remember that when an Autistic child is in crisis, the entire family is experiencing a crisis. Correct support given to not just the child or young person, but also the family unit is of paramount importance.
Through the effective deployment of new structures within services that place family wellbeing in parity with the wellbeing of the Autistic child or young person may make a world of difference. It is possible that by extending support to the family unit, significant improvements could also be seen in the child who has been referred.
Failure to act on these risks is neglectful and inadvertently places Autistic children and young people at greater risk of declining mental health.
References
Adkin, T. (2023) What is meerkat mode and how does it relate to AuDHD? Emergent Divergence. https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/
Ardic, A. (2020). Relationship between parental burnout level and perceived social support levels of parents of children with autism spectrum disorder. International Journal of Educational Methodology, 6(3), 533-543.
Campbell, T. C., Reupert, A., Sutton, K., Basu, S., Davidson, G., Middeldorp, C. M., … & Maybery, D. (2021). Prevalence of mental illness among parents of children receiving treatment within child and adolescent mental health services (CAMHS): a scoping review. European Child & Adolescent Psychiatry, 30, 997-1012.
Care Act (2014) https://www.legislation.gov.uk/ukpga/2014/23/section/10
Chiang, C. Y., Lu, C. Y., Lin, Y. H., Lin, H. Y., & Sun, F. K. (2015). Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis. Journal of psychiatric and mental health nursing, 22(10), 792-800.
Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.
Gatsou, L., & Yates, S. (2016). Supporting and safeguarding families with parental mental illness. Children and Young People’s Mental Health: Essentials for Nurses and Other Professionals, 44.
Gilmour, L. (2021). Seen but not heard: An exploration of the care journeys and experiences of children, their parents and CAMHS (Child and Adolescent Mental Health Services) practitioners after children are referred to CAMHS for reasons of suicidality.
Gray-Hammond, D. (2024) CAMHS: The Silent epidemic Stealing Our Autistic Children. Emergent Divergence. https://emergentdivergence.com/2024/06/10/camhs-the-silent-epidemic-stealing-our-autistic-children/
Gray-Hammond D. & Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence. https://emergentdivergence.com/2022/01/25/creating-autistic-suffering-fabricated-or-induced-illness-state-sanctioned-bullying/
Huang, Y., Trollor, J. N., Foley, K. R., & Arnold, S. R. (2023). “I’ve spent my whole life striving to be normal”: Internalized stigma and perceived impact of diagnosis in autistic adults. Autism in adulthood, 5(4), 423-436.
McAuley, C., & Young, C. (2006). The mental health of looked after children: Challenges for CAMHS provision. Journal of Social Work Practice, 20(1), 91-103.
O’Nions, E., Petersen, I., Buckman, J. E., Charlton, R., Cooper, C., Corbett, A., … & Stott, J. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet Regional Health–Europe, 29.
Rylaarsdam, L., & Guemez-Gamboa, A. (2019). Genetic causes and modifiers of autism spectrum disorder. Frontiers in cellular neuroscience, 13, 385.
Shea, L. L., Wong, M. Y., Song, W., Kaplan, K., Uppal, D., & Salzer, M. S. (2024). Autistic-delivered peer support: A feasibility study. Journal of autism and developmental disorders, 54(2), 409-422.
You must be logged in to post a comment.