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Mar 22 2024
CAMHS Fails Autistic Children, and the NHS ignores it

It seems that with increasing regularity I come across more and more evidence that Child and Adolescent Mental Health Services (CAMHS) failing of Autistic people is well known. Despite this, very little action seems to be take to correct this major risk. The government is aware, and it seems as though the NHS itself is also aware. The following is commentary on a report from Child & Family Health Devon (CFHD), taken off of the NHS website. The question to be answered by the report by Research Inspired by Service Experts (RISE) was:

“How does having a diagnosis of a neurodiverse (sic) condition affect CAMHS practitioners’ decisions about mental health treatment?”

CAMHS RISE report

Please note that the word “neurodiverse” is used incorrectly throughout the report, however, I will be using direct quotes. Often the word they should be using is “neurodivergent”.

Image from the CAMHS RISE report showing the question "How does having a diagnosis of a neurodiverse condition affect CAMHS practitioners decisions about mental health treatment?"
Image from front cover of report

“Little Evidence” of CAMHS tailoring treatments to neurodivergent children

“Even though many CAMHS users are neurodivergent, there is little evidence to show that CAMHS practitioners tailor treatment options for these children and young people. Instead, the approach is standardised for the mental health condition which can lead to problems with accessibility and inappropriate interventions.”

CAMHS RISE report

It has been highlighted in government reports that treatments provided within CAMHS are often developed by people who lack insight into Autistic and neurodivergent experience. Linden et al (2023) found there is a great deal of uncertainty around whether or not traditional treatments for anxiety and depression are effective for Autistic people. Evidence for treatments of depression appears to be quite weak (Menezes, 2020), Loizou et al (2023) finding that while treatments can be adapted to make a bespoke package of care, more research is needed.

Inappropriate mental health treatment makes mental health worse

“One study looking at the experiences of autistic CAMHS users found that mainstream interventions that were not modified for the young person’s autism were often unsuccessful in improving their mental health, or in some cases, made symptoms worse.”

CAMHS RISE report

The study in question is Read & Schofield (2010). The research again highlights the need for services to be adapted to the unique needs of Autistic individuals. This lack of adaptation is, in my opinion, a combination of under-resourced services, coupled with the double empathy divide between professionals and service users. Simply put, professionals rarely appreciate how inappropriate treatments are because they have no point of reference within Autistic and neurodivergent experience. Even if they did, services lack the resources to create something suitable.

CAMHS staff are “unwilling” to adapt treatments to Autistic children

“Other studies have also commented on the inability or unwillingness of mental health practitioners to tailor approaches to support the needs of those with an Autism Spectrum Condition (ASC) diagnosis.”

CAMHS RISE report

The study referred to here is Adams & Young (2020). This highlights to me the broader ableism within mental health treatment where disable children are being expected to meet a normative standard, rather than treatment being adapted to their needs. Research has indicated that ableist microagressions negatively impact outcomes in mental health treatment (Kattari, 2020). Autistic and neurodivergent children exposed to ableism are also likely to internalise ableist opinions which can have a lasting impact on their wellbeing. Internalised ableism can lead to social exclusion and marginalisation (Jóhannsdóttir et al, 2022).

How can CAMHS change for the better?

The prevailing theme throughout the research and the report is of a need for taking a different approach to Autistic and neurodivergent people. While adapting mental health treatments may be of some efficacy, services like CAMHS need to encourage further research to make sure that adaptations are helpful rather than harmful.

There also needs to be a distinct change in professional culture and attitudes to alleviate the impact of the double empathy divide, and professional ableism. Disabled service users deserve equitable access to resources that help them without causing further harm. Until this can be done, it is likely that CAMHS will remain a service that can not appropriately support many of it’s neurodivergent service users.

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References

Adams, D., & Young, K. (2021). A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in individuals on the autism spectrum. Review Journal of Autism and Developmental Disorders, 8(4), 436-453.

Jóhannsdóttir, Á., Egilson, S. Þ., & Haraldsdóttir, F. (2022). Implications of internalised ableism for the health and wellbeing of disabled young people. Sociology of health & illness, 44(2), 360-376.

Kattari, S. K. (2020). Ableist microaggressions and the mental health of disabled adults. Community Mental Health Journal, 56(6), 1170-1179.

Linden, A., Best, L., Elise, F., Roberts, D., Branagan, A., Tay, Y. B. E., … & Gurusamy, K. (2023). Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: A systematic review and network meta-analysis of randomised controlled trials. Autism, 27(1), 7-30.

Loizou, S., Pemovska, T., Stefanidou, T., Foye, U., Cooper, R., Kular, A., … & Johnson, S. (2023). Approaches to improving mental health care for autistic people: a systematic review. MedRxiv, 2023-03.

Menezes, M., Harkins, C., Robinson, M. F., & Mazurek, M. O. (2020). Treatment of depression in individuals with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 78, 101639.

Read, N., & Schofield, A. (2010). Autism: are mental health services failing children and parents? Recent research suggests that many CAMHS need to improve. Journal of Family Health Care, 20(4), 120-125.

David Gray-Hammond 0 Comments
Mar 20 2024
Autistic Burnout: When the Autistic brain overloads

Autistic burnout has been a subject of discussion in Autistic circles for many years. One could imagine that there is little left to be discussed, and yet understanding of what burnout actually looks like is still not up to scratch. It would seem that we need to have a discussion about what forms burnout can take, and how it’s innumerable forms can impact on Autistic people.

What is Autistic burnout?

“Autistic burnout” is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life.1 Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior

Raymaker et al (2020)

At the surface level, burnout is understood as absolute exhaustion. Unfortunately this has resulted in observational models largely presenting something that is often mistaken for depression (more on this later). For me, the key word in the above quote is “distress”. As we will explore further, this distress can take many forms. However for the purposes of defining here, Autistic burnout can look like the following

Autistic adults reported that “Autistic burnout is when I no longer have the energy reserves
necessary to act Neurotypical”. The impact of autistic burnout cannot be understated, with some
even describing suicidal ideation or suicide attempts.

Arnold et al (2022)

Of note is the findings of Raymaker et al (2020) that found chronic exhaustion, loss of skills, and decreased tolerance to stimulus to be regular features of burnout.

Does burnout always look like depression?

It’s important to note that research is still in it’s infancy here and limited literature exists. A simple answer to this question is that overlap exists. Some features of Autistic burnout are shared with depression, and a person can certainly experience both simultaneously. However, one key take away is that burnout can not be treated with medication. Instead it is necessary to curate one’s environment and make alteration to how we engage with demands (read as; change our boundaries).

In simple terms, burnout is unique to the individual. It will vary based on the demands of one’s life, further neurodivergence, and the environment and culture we exist within. Broadly speaking, burnout is less about withdrawing, and more about overloading. As such, burnout is influenced by the way that we manage our emotions and psychological resources.

Atypical Burnout

Atypical burnout is somewhat misleadingly named, because it is not all that atypical. It can be conceptualised as a form of Autistic burnout that does not match with common observational models of what burnout is understood to be (Adkin & Gray-Hammond, 2023). Such forms of burnout (anecdotally) can appear as paranoia, mania, or even episodes of psychosis.

These forms of psychosis are reported by Autistic people to be closely tied to experiences of parenting or work where they are unable to simply stop and recover. Members of the Autistic community have also connected it with interoceptive differences that result in alexithymia. Also to consider is the intersection with ADHD of which Rong et al (2021) found in 40.2% of cases. Co-occurring ADHD may prevent a person from being able to rest and re-regulate themselves.

Autistic burnout and psychosis

To date there is no academic research into the link between Autistic burnout and psychosis. However, the previously published article on the burnout to psychosis cycle proved popular enough to suggest that there is a need for research into this phenomenon of burnout (Gray-Hammond & Adkin, 2023).

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.
Image of the cycle from Autistic burnout to Psychosis

This cycle is particularly relevant to AuDHD (Autistic + ADHD) people. Professionally, I have witnessed this particular cycle, and would again highlight the need to conduct further research in this area. Ribolsi et al (2023) found a prevalence rate for psychosis of 34.8% in Autistic populations. Similarly, ADHD traits have been observed in up to 57% of Schizophrenic cohorts (Arican et al, 2019).

Meerkat Mode

Meerkat mode presents a state of chronic hypervigilance secondary to atypical burnout. Conceptualised by Tanya Adkin, this is yet another professional observation that warrants further research (Adkin, 2023). It is common in cases of monotropic split (Adkin, 2022). Yet again we see the AuDHD intersection, demonstrating again how features of burnout can be impacted by further neurodivergence. This is particularly interesting for those observing mania in Autistic people. This particular intersection is significantly under researched. Underwood et al (2023) did find that Bipolar Disorder is of increased prevalence in autistic people at 2.5%.

Autistic burnout is complex and diverse

It is clear from literature and the experiences of Autistic people that burnout is not as simple as needing to stop and rest. Autistic burnout presents a matter of clinical significance for those supporting the mental health of Autistic people, up to 79% of whom may experience a mental health problem (Curnow et al, 2023). It is of the utmost urgency that burnout and it’s intersection with mental health is investigated. Lets not forget that Autistic people represent up to 41% of suicide deaths (Cassidy et al, 2022). Understanding Autistic burnout might just save lives.

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References

Adkin, T. (2022) Guest Post: What is monotropic split? https://emergentdivergence.com/2022/07/14/guest-post-what-is-monotropic-split/

Adkin, T. (2023) What is meerkat mode and how does it relate to AuDHD? https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/

Adkin, T., & Gray-Hammond, D. (2023) Creating Autistic Suffering: What is Atypical Burnout? https://emergentdivergence.com/2023/05/12/creating-autistic-suffering-what-is-atypical-burnout/

Arican, I., Bass, N., Neelam, K., Wolfe, K., McQuillin, A., & Giaroli, G. (2019). Prevalence of attention deficit hyperactivity disorder symptoms in patients with schizophrenia. Acta Psychiatrica Scandinavica, 139(1), 89-96.

Arnold, S., Higgins, J., Weise, J., Desai, A., Pellicano, L., & Trollor, T. (2022) Investigating Autistic burnout (#AutBurnout). https://www.autismcrc.com.au/sites/default/files/reports/3-076RI_Autistic-Burnout_Final-report.pdf

Cassidy, S., Au-Yeung, S., Robertson, A., Cogger-Ward, H., Richards, G., Allison, C., … & Baron-Cohen, S. (2022). Autism and autistic traits in those who died by suicide in England. The British Journal of Psychiatry, 221(5), 683-691.

Curnow, E., Rutherford, M., Maciver, D., Johnston, L., Prior, S., Boilson, M., … & Meff, T. (2023). Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective. Plos one, 18(7), e0288275.

Gray-Hammond, D., & Adkin, T. (2023) Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look. https://emergentdivergence.com/2023/06/05/creating-autistic-suffering-the-audhd-burnout-to-psychosis-cycle-a-deeper-look/

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

Ribolsi, M., Fiori Nastro, F., Sacchetto, S., Riccioni, A., Siracusano, M., Mazzone, L., & Di Lorenzo, G. (2022). Recognizing psychosis in autism spectrum disorder. Frontiers in Psychiatry, 13, 768586.

Rong, Y., Yang, C. J., Jin, Y., & Wang, Y. (2021). Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis. Research in Autism Spectrum Disorders, 83, 101759.

Underwood, J. F., DelPozo-Banos, M., Frizzati, A., Rai, D., John, A., & Hall, J. (2023). Neurological and psychiatric disorders among autistic adults: a population healthcare record study. Psychological Medicine, 53(12), 5663-5673.

David Gray-Hammond 1 Comments
Mar 18 2024
CAMHS: Burnout, School Avoidance, and gaslighting

Child and Adolescent Mental Health Services (CAMHS) have been a focus of mine for quite some time now. I have talked about how they failed me, and how they are still failing Autistic children and young people over 15 years later. I have highlighted the fact that our government are aware of their failings (in my book CAMHS in Crisis) and done nothing. What I would like to do now is pass the proverbial microphone and focus on the lived experience of others. The following posts from Twitter/X, and a report were all gathered from the following outreach.

For further definitions of what Autistic burnout is, please click the buttons below.

Raymaker et al (2020)
Atypical Burnout

“Arrogant, Selfish, Stubborn” and CAMHS threats & gaslighting around Autistic burnout

It is an open secret that CAMHS can be actively hostile towards not just parents and carers, but also the young people that come through their doors. This hostility is particular harmful for Autistic people and their families, most of whom are living in a world that actively discriminates against them.

Calling a young person “arrogant, selfish, stubborn” for expressing a common and debilitating feature of the Autistic experience is deeply troubling. Cage et al (2018) found that higher levels of perceived acceptance of autism correlated with decreased likelihood of depression scores. It is therefore deeply troubling that Autistic people are being met with hostility and denial of their experience at a time when they are likely to be in crisis. Further research has also shown that increased suicidality in Autistic people is correlated with feeling like a burden, and depression (Moseley et al, 2022).

I also can not ignore the threats of fines and prison. This is particularly relevant to parents and carers of Autistic children and young people. Institutionalised Parent Carer Blame is a real and problematic thing. In particular, it is of relevance to disabled families who are more likely to fall foul of these practices (Clement & Aiello, 2021).

The second part of this tweet highlights the use of Cognitive Behavioural Therapy (CBT) to “gaslight” the individual about their burnout. Tanya Adkin and I have written before about issues with neuronormativity in mental health care. Anecdotally, many Autistic people report issues with the “one-size-fits-all” approach of CBT. Weston et al (2016) found in its meta-analysis that CBT only has a small to medium effect size for various outcomes measured. This was found in both reports by therapy clients as well as clinicians. When will we move on from these so called “gold-standard” approaches that only work for certain demographics?

“It ruined him”: Over-reliance on resilience building techniques

What really stands out to me here is the concept of “resilience building” that is pervasive in so many professions. Forcing an Autistic child or young person into the school environment when they are so distressed they are melting down is traumatic. CAMHS, however, will convince parents to do so from their position of power. What stings more is that they will then blame the parents when it all goes wrong; despite it being their advice that was being followed.

Something else that I find particularly upsetting is the inherent parent blame in suggesting attachment issues. Research suggests that autism and attachment disorders can be difficult to differentiate save for one feature; attachment disorder is thought to be caused by abuse or neglect (Davidson et al, 2022). The implication of “attachment issues” is that parents are to be held responsible rather than the systems of society that make it so easy for Autistic children and young people to burn out.

Another story highlights the lack of understanding and contempt for Autistic burnout

The person involved noted that the CAMHS clinician acknowledged ‘residual trauma’ in a young person’s ‘avoidance’ of school, but instead of offering further understanding, compassion & empathy recommended ‘graded exposure’, citing that avoiding going to school would only increase their anxiety. Even more horrifying was the open acknowledgement that the young person needs to suffer to see improvement, with a suggestion that the avoidance behaviours are not seen at home as avoiding school is ‘understandably making them feel safe’ with nothing to ‘trigger’ them

Professionally, I have worked with many children and young people who have been exposed to these attitudes. There is more focus on “back to school” tactics than on acknowledging the progress that a child or young person makes away from school. For many Autistic children, being away from the mainstream school environment can be lifesaving.

Totsika et al (2020) highlights attendance of mainstream school as a persistent factor in Autistic non-attendance of school. Perhaps the professional in question should have considered the impact of the school environment, and how that can be adjusted, rather than valuing attendance in the face of immense suffering. Graded exposure is also a CBT technique, and as previously mentioned, is likely to only have a small impact. It is likely that it would involve putting a child through distress for little benefit.

Implications for CAMHS professional practice

CAMHS professionals need to completely rethink their approach to Autistic children and young people. Not only is their experience being invalidated, they are being gaslit. They are also being forced into situations that cause further distress, with young people and their parents taking the blame for the fall out. CAMHS professionals should be working from a position of compassion and empathy. While I acknowledge that the double empathy problem presents a challenge for professionals, they should be acknowledging the boundaries of the children and young people they are working with.

It is not effective to force Autistic children to “push through” their burnout. Burnout is a complicated and debilitating life experience that has become endemic to the Autistic community; likely because of professional attitudes when we approach professionals for support.

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References

Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of autism acceptance and mental health in autistic adults. Journal of autism and developmental disorders, 48, 473-484.

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.

Davidson, C., Moran, H., & Minnis, H. (2022). Autism and attachment disorders–how do we tell the difference?. BJPsych Advances, 28(6), 371-380.

Moseley, R. L., Gregory, N. J., Smith, P., Allison, C., Cassidy, S., & Baron-Cohen, S. (2022). The relevance of the interpersonal theory of suicide for predicting past-year and lifetime suicidality in autistic adults. Molecular autism, 13(1), 14.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

Totsika, V., Hastings, R. P., Dutton, Y., Worsley, A., Melvin, G., Gray, K., … & Heyne, D. (2020). Types and correlates of school non-attendance in students with autism spectrum disorders. Autism, 24(7), 1639-1649.

Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural therapy with people who have autistic spectrum disorders: A systematic review and meta-analysis. Clinical psychology review, 49, 41-54.

David Gray-Hammond 0 Comments
Mar 11 2024
CAMHS are responsible for suicidal Autistic adults

When one thinks about Child and Adolescent Mental Health Service (CAMHS), it’s reasonable to assume you think of children. That’s what they exist for; improving the mental health of children and young people. It conjures images of the countless Autistic children who are failed by this service. However the impact of CAMHS failings expands beyond our youth. Struggling children become struggling adults without appropriate support. Perhaps then, we can see the impact of failings in the number of Autistic adults who are being diagnosed with complex mental health conditions.

The importance of early-intervention in CAMHS services

Autistic people experience a varied and frequent stream of traumatic life events. The outcome of this is demonstrated in the 70%+ of Autistic people who will experience a mental health condition in their life. This stands in stark comparison to the 12.5% of the general population who have a mental health condition.

This places CAMHS in a unique position. Trauma often starts in early childhood for Autistic people. This means that they have the opportunity to intervene and improve our wellbeing early on in life. Despite this, services either reject us for being Autistic or provide inappropriate treatment. Membride (2016) speaks of the importance of early-intervention. They note that untreated mental health issues will continue into adulthood. Sturgeon (2012) notes that many adults experiencing mental health issues will also experience social marginalisation and systemic violence.

Failing Autistic children is costing the lives of Autistic adults

We have to discuss suicide rates in the Autistic population. Hedley & Uljarevic (2018) found that up to 66% of Autistic adults experience suicidal ideation with 35% attempting suicide. Overall suicide accounted for 0.31% of premature deaths in Autistic populations. This is an area for significant concern. In the general population suicide only accounted for 0.0092% of deaths.

Overall the Royal College of Psychiatrists found that Autistic people are 9x more likely to die by suicide. It’s reasonable to argue that appropriate support from CAMHS in childhood would reduce these deeply troubling statistics to at least be closer in line with the general population. Fergusson et al (2005) found that both suicidal ideation and suicide attempts were predictive of mental health issues in early adulthood. Still CAMHS are turning away Autistic young people and children.

CAMHS are creating a crisis for adult mental health services

By failing to support Autistic children and young people, CAMHS are creating a burden on mental health systems that we access later in life. When we consider the significantly higher rates of mental health issues in Autistic adults, we can infer that support at an earlier age would lead to better outcomes.

Those Autistic people who survive childhood are going on to become Autistic adults who are permanently stuck in survival mode. Let us not forget that Autistic adults are also more likely to have Autistic children themselves, being thrown back into a system that may have traumatised them as a child.

The CAMHS to Social Services pipeline

Autistic children are failed by CAMHS leading to mental health issues in adulthood. These Autistic adults then have children of their own and are forced to access the same institutions that traumatised them in order to access support for their own Autistic child. The compounding effect of systemic violence and the mental health problems they are left with from childhood leads to safeguarding referrals.

Clements & Aiello (2021) find that disabled parents, in this case neurodivergent parents, are more likely to experience parental blame for their children’s struggles. I would infer that failure by CAMHS in childhood has a significant link to later involvement with social services as an adult. Services fail to support Autistic people and their families, and then blame them for the negative outcomes.

Concluding Thoughts

We could argue that more research is needed in this area to establish causation and impacts, but I would offer an alternative. Researching this area makes very little difference if services are not going to improve their approach to Autistic people. Academics can spend years establishing the real world impacts of CAMHS failures, but until they decide to improve their services, we will continue to fall victim to the systemic violence of CAMHS and similar services.

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David Gray-Hammond 0 Comments
Mar 6 2024
Autistic Parenting: Parenting through burnout

Adulting is hard enough, parenting is hard enough. Together they come with a number of considerations for how we can be effective in our role as Autistic parents. In particular, we have to consider the impact of Autistic burnout, which can have a significant effect on not just us, but also our families. Autistic parenting is a challenge with many positives and some significant challenges.

What is Autistic burnout and how does it relate to Autistic parenting?

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”

Raymaker et al, 2020

Burnout doesn’t always look like lying in bed unable to function. For parents, responsibilities do not go away simply because we have no cognitive resources left. Not to mention that capitalism trundles on, and for those of us who are financially supporting young people and children, we still have to work.

Autistic burnout can alter the way that we parent our children, burnout can make us snappier, and impact on our decision making and executive function (Munday, 2022). Burnout also presents risks that are associated with how we are perceived as disabled parents in our current society.

How does society view Autistic parents?

There are two particularly irksome views associated with being an Autistic parent. One is to view us as being subpar parents, the other is that we can’t be parents. Neither of these are universally true. Autistic parents can and do exist, and represent a wide selection of parenting styles and abilities.

Something that is particularly problematic, however, is the way that society holds us responsible for negative outcomes in our children’s lives in the absence of good quality support. This institutionalised parent carer blame (Clements & Aiello, 2021) can range from being sent on parenting course to “improve” our parenting skills, through to demonstrably hostile accusations of things like Fabricated or Induced Illness (FII) (Gray-Hammond & Adkin, 2022).

As we see in the aforementioned research from Clements & Aiello (2021) Autistic parenting is often seen as the site of catastrophe, when in reality such occurrences could be avoided with suitable support. Is it any wonder that Autistic parents often experience burnout when they are made to fulfill not just their parenting role, but to also fight with Local Authorities and services over provision that their children are legally entitled to?

What might burnout look like in Autistic parenting (Dysregulation)?

When we’re burnt out, we often need another person to co-regulate with us, meaning that one person share’s their calm with us. Co-regulating our children can be a challenge because burnout can leave us emotionally dysregulated and somewhat dissociated. This can be more of a challenge for people parenting alone, or co-parenting over distance. They may not necessarily have another adult around to help them co-regulate back to a baseline state of emotions.

Parenting together doesn’t always guarantee co-regulation either, in fact, dysregulation of one family member can lead to a state of co-dysregulation in which each person further dysregulates the others (Adkin, 2023). When we are in this state of dysregulation, we are more likely to have a reactive parenting style.

What might burnout look like in Autistic parenting (Executive Function)?

Executive function, or the ability to plan and execute tasks, can also suffer when we are burnt out. Parenting is full of decisions, from what to prepare for lunch, through to what school they should attend or rapid decisions such as if they need medical attention. These decisions can become overwhelming and may result in choices that can have serious repercussions. It is also incredibly frustrating to not be able to effectively make decisions in real time, which can add to our dysregulation.

This in particular highlights the issue of brain fog which can be a very common feature of burnout. This refers to the feeling of not being able to think clearly and can result in problems like choice paralysis and further frustration.

What can we do about Autistic burnout as parents?

There are practical things that we can do to make our lives as Autistic parents easier:

  • Ear defenders/Ear plugs or other sensory accommodations
  • Having a space to take yourself away and re-regulate ourselves briefly
  • Good communication with people who understand the nuances of our parenting situation
  • Remembering to take care of ourselves and eat where possible, fed is best
  • Break time down into manageable units, try not to get overwhelmed by future demands

Feel free to add comments with your own helpful tips, we do not exist in isolation and can often share in problem solving.

Resources

Information from Autistic Parents UK
Meet Ups and Support Groups
ND Social Care and Family Services on Facebook

References

Adkin, T. (2023) What is meerkat mode and how does it relate to AuDHD? emergentdivergence.com

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.

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. emergentdivergence.com

Munday, K. (2022) Autistic parenthood: mental load burnout. autisticltd.co.uk

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

David Gray-Hammond 1 Comments
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