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CAMHS: Coping with parent carer burnout
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 Methodology6(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 Psychiatry30, 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 nursing22(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 adulthood5(4), 423-436.

McAuley, C., & Young, C. (2006). The mental health of looked after children: Challenges for CAMHS provision. Journal of Social Work Practice20(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–Europe29.

Rylaarsdam, L., & Guemez-Gamboa, A. (2019). Genetic causes and modifiers of autism spectrum disorder. Frontiers in cellular neuroscience13, 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 disorders54(2), 409-422.

Teaching your child Autistic pride while CAMHS fail them

Today (June 18th) is Autistic pride day. It is a day of protest against a world that wants us to be ashamed of who we are. We live in a world that tells us not to be defined by who we are. A world that feels defined by people like CAMHS professionals. To that world, I say this:

“When I wake up, I do so Autistically. When I hold my son, I do so Autistically. When I breathe my last breath, I will do so Autistically. Autism is not a separate entity that inhabits me. I do not carry my autism as one might carry a brief case. My autism is the words I write, the thoughts I think. Autism is the way I feel. Autism is the way I love.”

For the full article click here

It’s okay for us to admit that being Autistic is a core part of who we are. The problem is that when we are faced by services like CAMHS, we can feel reduced to our struggles, rather than the things that make us like ourselves. When services like CAMHS describe us as a list of medical issues and disorders, it can be very difficult not to feel ashamed of yourself. For our children, repeated exposure to these attitudes can cause them to internalise the idea that they need to be someone other than who they are. It can make them believe they are not good enough.

3 ways to make Autistic Pride Day a time of celebration for your child

In order to feel that Autistic Pride Day is meaningful for us, we have to use the rest of the year to learn what it is about us that makes us proud.

1. Let your child define their own experience

Very often, Autistic people are taught that the value and definition of their existence comes from the people around them. A lot of time is dedicated to redefining Autistic children as “challenging” and in need to correction. Allow your child to make their own meaning, and understand that they are allowed to be different.

2. Teach your child to self-advocate

This ranges from being able to say no to things through to involving them in community action for their own rights. Even if your child can’t attend a protest, maybe there are other ways for them to express their feelings on the things that matter to them. Autonomy will go a long way.

3. Let your child learn about autism from other Autistic people

Autistic children are often exposed to information on autism from people who can not give it the right context. Peer mentoring and interaction with other Autistic people can do a great deal of good for your child’s pride in who they are.

Autistic Pride when we’re not being supported

Happy Autistic Pride Day

Even if you don't feel proud

This day is for you

A gold infinity symbol is beneath the text

For Autistic children and young people, unsupported mental health can do a lot of damage to pride. We need to teach our children that Autistic pride day is still a day for them, even if they don’t feel proud. CAMHS may not be supporting them, but others are. They may be told by professionals that they are broken of defective, but those who love them no better. We, the Autistic community, know better. Autistic children and young people need to be told that they are allowed to struggle and be proud of who they are.

It’s difficult to be proud of who you are when services like CAMHS are failing to support you. It can make you feel unworthy, unloved, that you don’t belong. It is our duty as fellow Autistic people and family members to show them the beauty in their own existence. For Autistic children in mental health services, Autistic pride is a protest against a system that is crushing their will.

They deserve the world to be a nurturing place. It’s our job to make it so.

CAMHS in Crisis: Wait Times Are Harming Autistic Children

There are a multitude of ways that Child and Adolescent Mental Health Services (CAMHS) are harming our Autistic children and young people. Perhaps one of the most evident ways this is happening is the appallingly long wait times for access to services. Even some 24 years ago, My referral at the age of 10 years old did not come to fruition until I was 15 and missing huge amounts of school. We are only taken seriously when not acting will hurt services. So, we have long wait times. How long are they and what harm do they do?

How long are CAMHS waiting times?

According to the Royal College of Psychiatrists, there were over 400,000 children on CAMHS waiting lists as of May 2023, with almost 18,000 of those being on a waiting list for over a year. The same source cites a 9 month average wait for those who are suspected to be Autistic. One might question how children in crisis are expected to wait 9 months for diagnosis and the (non-existent) support they are entitled to. I would highlight at this point how mental health of people of any age has not been a funding priority for many years, which has likely contributed to the attrition of viable services.

What is the impact of long CAMHS wait lists?

The Impact of CAMHS Wait Lists

Worsening mental health
Increased risk of crisis
Disrupted educational and social development
Reduced engagement with services

Worsening Mental Health

The longer Autistic children are left to wait for support, the worse their mental health can become. Supporting our children with their mental health should be done with great urgency, and yet many of our children are being left to struggle through, compounding trauma with further trauma.

Increased Risk of Crisis

Further to the above point, as mental health worsens, the risk of life threatening crisis increases. Many children are being sent to CAMHS on the brink of crisis, if they are not there already. They are then being faced by long wait times to access support that is not well designed for them.

Disrupted Educational and Social Development

Many Autistic people (including myself) face exclusion from school systems and social opportunities via their worsening mental health. It is no secret that mental health problems come with a lot of stigma, and educational institutions and social activities are often the first thing we lose access to as our world shrinks.

Reduced Engagement With Services

Failure to address children and young people’s needs in good time can seriously impact on our trust in the system. Autistic children in particular may already struggle to trust people due to the trauma that society puts us through. We can not be surprised that Autistic children struggle to engage with services that make them feel like an afterthought.

What can we do to change CAMHS wait lists?

One of the primary ways we can improve wait times is by lobbying our government to make mental health a priority. Services like CAMHS need more funding and resources. Besides this, we need better training for staff and an increased presence of neurodivergent competent staff within the service. Ultimately we need neurodivergent people working for CAMHS, which is going to take some huge systemic changes from a service that has been (at time) hostile towards neurodivergent staff.

We need to join our voices together and make noise about this. Silence is complicity, neutrality is complicity. The only thing that is going to push these changed through is making noise and showing that we will not tolerate our children being treated this way. I often think of my own child and the future I want to leave for him. I want to know that he, and any children he may have are living in a world that supports and nurtures them.

Every child lost is a scar on the face of a country that is supposed to be a leading world power.

CAMHS: My Autistic Child’s been referred… Now what?

I have written at length about how Child and Adolescent Mental Health Services (CAMHS) have been failing our Autistic young people. Despite the Autistic communities wide spread knowledge that this service is not fit for purpose, our children still get referred to them. So what, if anything, should be happening when a referral happens? What do you, as the parent carer, need to know from them? As a qualified independent mental health advocate working specifically with Autistic people, here is what I would be doing and asking.

Make CAMHS professionals create a paper trail

What CAMHS say and what they do is often at odds with each other. Much of the communication may take place over the phone or face-to-face. While this is great for getting quick answers (sometimes), it’s easy for professionals to back track or deny things that have been said. For this reason, I would strongly recommend asking for all communications to be put into writing. It’s okay to use the phone, or be there in person, but ask them to summarise and confirm their words in an email or letter.

Not only does it make it easier to keep track of anything you need to do, it will make professionals think twice about committing to things they can’t follow through on. Another benefit to written communication is that should things go down hill and require investigation by third-parties, there is a clear chronology and record of interactions. Don’t forget, if you feel you have been misrepresented, tell them in writing so that there is a clear record of your disagreement.

What questions should I be asking CAMHS professionals?

What questions should I be asking CAMHS?

The questions on the image are the same as in the article.

“What is your role within the service?”

This question is important because it sets expectations for you about what this person can and can not do with regards to your child. Miscommunications happen often because the professional in front of you is not the one you need to speak to. Do not be afraid to explore what the limits of their professional remit is so that you can establish if this is the right person to work with your child.

“How long will it take to assess my child?”

When children are referred there is often a lot of anxiety surrounding wait lists and assessments. It is okay to ask for timelines, even if they can’t be given. Don’t be afraid to press the urgency of your child’s support needs.

“What are you looking for in this assessment?”

Many professionals will prefer you to go into an assessment with no background information. However, you have a right to know why your child is being assessed. This is a helpful question as it can help you prepare and collate information ahead of assessments, Many parents are neurodivergent themselves and need time to script their interactions and prepare information in a way that others will understand.

“What support and treatment can your service offer?”

It is 100% okay to ask what supports and treatments a service offers. If all they offer is group therapy which your child won’t engage with, you need to know that before wasting time on an assessment. Part of advocating for our child is having the knowledge required to know if a service is right for your child.

“What training and experience on autism and neurodiversity do your staff have?”

This is a very important question. While there is now mandatory training into autism and learning disability for all NHS staff, this is somewhat superficial. What we need to see is staff who have been regularly engaging with Autistic service users and receiving further training beyond the mandatory training that exists.

“How will this service/therapy be adapted to my child’s needs?”

It is important to know how therapy or a service is adapted to individual children, particularly Autistic children. Asking this question allows you to get a feel for how important a successful outcome is to the professional working with your child. Do not be afraid to voice to the professional if you don’t think something will work for your child.

“Does your service implement service user involvement into it’s design?”

This is a question that is rarely thought of, but the answer can tell you a lot. If a service employs service user involvement in the design and implementation of treatment policy, then it is actively given those service users a voice in it’s management. It means staff have been made to have the uncomfortable conversations when something doesn’t work. It also tends to make services a lot better adapted to the needs of their service users.

You are entitled to advocacy support for your child and yourself

If either yourself or your child need additional support to understand your rights and have them met, you are entitled to instruct an advocate to support you and your family. You can bring advocates to appointments, have communications sent to them, and have them communicate on their behalf. Professionals are not allowed to bar you from involving an advocate in the CAMHS process. If staff are combative or refuse access to your advocate, consider making a formal complaint in the first instance or escalating your complaint to the health ombudsman. The health ombudsman provides an independent complaints service.

This is far from a conclusive list, but I hope that in some way this helps you feel more prepared for engaging with CAMHS. Please do share this with others to help even more people!

The AuDHD Burnout to Psychosis Cycle: A personal experience

There are many wonderful things I have discovered about being AuDHD (that is- Autistic and ADHD at the same time). Despite this, there are many challenges I would associate with being neurodivergent. I am also Schizophrenic. Lack of support with these facets of my own neurodivergence took me on a path through drug and alcohol addiction for many years, and also led me into years of psychotic episodes and distress. It is only by spending time in neurodivergent communities that I have learned to accommodate my own needs as best I can, and advocate for myself where I can’t. Something I have learned in particular is that my journey into psychosis tends to follow a familiar cycle. I have previously explored it in the Creating Autistic Suffering series that I co-author, but felt that I wished to bring some more personal perspective to it.

What does AuDHD and Psychosis look like for me?

My particular brand of neurodivergence looks like organised chaos. On the surface I provide a veneer of control while hidden beneath I am paddling desperately to stay afloat. One might imagine this is highly relatable to the countless numbers of AuDHD’ers (50-70% of Autistic people are also ADHD) in the neurodivergent community. Psychosis adds an interesting spiciness to this experience. When I start sinking, my brain tells me that someone else is pulling me under. This is the type of delusions I experience. They are persecutory in nature, meaning that my mind creates elaborate and bizarre conspiracies in which I am the victim of individuals or groups who mean me harm.

This, again, might sound familiar to members of this community. It is thought that almost 35% of Autistic people experience psychotic “traits”. This is why I feel it is important to be open about my experience. When I admit to hearing voices, seeing entities that don’t exist, and having delusional thoughts, I hope to pave the way for others to be open. I share stories of my manic thinking that has me trying to travel to other countries on impulse because others need to know that they are not alone in the absurdity of complex mental health issues.

The AuDHD Burnout to Psychosis Cycle

An image about the link between Autistic burnout and psychosis titled- The AuDHD Burnout to Psychosis Cycle. It shows monotropic split leading to Atypical burnout. This then leads to Meerkatting, negative monotropic spiral, and onto pyschotic phenomena. This in turn leads back to atypical burnout.

1. Monotropic Split

It almost always starts with the number of demands in my life vastly overwhelming the cognitive resources that i have available. I will try and manage competing demands with the same amount of attention (100% hyperfocus) given to each demand. As my monotropic resources are split apart, my AuDHD bodymind enters into Burnout.

2. Atypical Burnout

Atypical because it doesn’t fit standard observational models, I find myself dragging my way through each day. Things that I was managing well suddenly become impossible tasks. Unfortunately the demands don’t go anywhere. It’s not simple to rest as a working parent. It’s not simple to say no to people. It costs resources to explain to people that you are overwhelmed and burnt out. This is my story. I can not stop, not least of all because my AuDHD brain needs constant stimulation. Uncontrollable stillness can be just as painful to me as the monotropic split that led me here.

3. Meerkat Mode and Mania

Burnout is an unsafe experience. As we lose skills that we took for granted and our capacity to engage with the world decreases, we can start to lose perspective. What seems simple and manageable to me when doing well, suddenly feels like a terrible thing. I obsess over small details and impulsively make decisions, particuclar financial decision. It is around this time that what people would understand as madness (I am a firm believer in Mad Pride) starts to set in. Everything becomes unsustainable, everything becomes an attack. I am at the centre of a world that is set up to hurt me.

4. Monotropic Spiral

As my mind attempts to piece together and rationalise my struggle with things that once came naturally to me, it starts to add meaning where there is none. Like a black hole, unrelated incidents starts joining together and I obsess over them. I am at this point losing my ability to differentiate between my internal world and the external reality that everyone else seems to agree on.

5. AuDHD and Psychosis

At this point my AuDHD mind has completely lost grip on the reality that we all take for granted. Internal thoughts become disembodied voices, images in my mind take physical form. I impulsively lead from imagined meanings to bizarre conclusions. I am now at the centre of a vast conspiracy where some unknown force is sending me to oblivion. On the surface I may appear a strange mix of manically happy and extremely paranoid. Beneath that mask I am trying desperately to fight with invisible forces that threaten to steal my sanity from me. I am no longer the David that people once knew.

The AuDHD psychosis cycle is self-perpetuating

Something that I learned from these experiences is that it’s true; burnout changes you. However, I disagree that this is always a bad thing. If we do not change after such violent experiences of burnout, we will keep restarting the cycle, falling in and out of these experiences time and again. Change can be a tool of recovery, and making those changes can prevent us ending up back where we started. I have had to learn to set boundaries in my life, and advocate as effectively as I can. This can be challenging for people who are in life situations where this is not taken seriously. I would however remind people that it is the people who dislike or ignore our boundaries that are the reason we have them in the first place.

AuDHD people deserve to live happy and fulfilled lives, and while we can not guarantee perpetual bliss, we can take steps to make life sustainable and happy.

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