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Autism and alexithymia: The fallout for our mental health

Autism and alexithymia are two things you might see discussed in tandem quite regularly. In fact, Vaiouli and Panayiotou (2021) found a strong postive correlation beween Autistic experience and alexithymia with Kinnaird et al (2019) finding a prevalence rate of nearly 50% among Autistic people. Considering the very high rates of alexithymia among Autistic people, it is necessary to think about how this might contribute to issues in healthcare settings where professionals are largely trained in non-autistic expressions of emotion.

Alexithymia (according to the Merriam-Webster dictionary) is the inability to identify and express or describe one’s emotions. In other words, an alexithymic person experiences emotions in a way that means they struggle to attribute the internal sensations to descriptive language. It is subset of interoceptive differences which is discussed by Adkin (2023) in relation to their concept of “Meerkat Mode”.

This obviously presents issues with accessing support for our mental health. How can we explain our struggle if we can’t put it into words? Professionals often take us less seriously because if it was “that bad” we would be able to voice our suffering. Unfortunately it is not as simple as this. Even in my own experience, I often struggle to feel the difference between emotions like anxiety and excitement. Happiness and sadness also feel similar to me, and exhaustion is something I often can’t recognise until I am at the point of crisis.

This is a significant enough issue to face as an Autistic adult, but it happens to Autistic children as well. We regularly see Autistic people turned away from services such as CAMHS because they are in no way equipped to help us. Children are naturally less adept at describing emotions, especially the big emotions, and when you throw alexithymia in on top of that it leads to a breakdown in communication that can have life threatening consequences.

I have found myself at multiple points in my life being administered medication that I did not need because the ways I have learned to articulate my very abstract feeling emotions have been misunderstood (accidentally and willfully) by psychiatrists. We live in a world that pathologises our suffering, meaning that we can face horrific side effects to treatments that we might not have needed had professionals been culturally competent with regards to mental health in Autistic people. Tanya Adkin and I have written about the importance of competence previously (Gray-Hammond & Adkin, 2023).

I often ponder on the relationship between my early experiences of not being able to communicate my emotions effectively to professionals and my subsequent years of a drug and alcohol addiction. Honkalampi et al (2022) found a positive correlation between alexithymia and substance use, which in my opinion may indicate a mechanism behind the findings of Weir et al (2021) showing significantly higher rates of self-medicating with recreational drugs among Autistic adolescents and adults. In fact, one of the primary drivers behind my drug use was having control over my emotional experience. I would hazard a guess that drug use is so common in the Autistic community because it allows us to feel a familiar and more easily described feeling.

It is clear that alexithymia is a significant issue for not just Autistic people, but also for professionals working in healthcare and wellbeing practices. The links between alexithymia, poor access to mental health support, and risk taking behaviour are clear. It’s necessary for professionals working with Autistic people to find ways to help Autistic people articulate their emotions rather than to just ignore us or belittle our struggles.

Our lives depend on it.

References

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/

Gray-Hammond, D., & Adkin, T. (2023). Creating Autistic Suffering: Autistic safety and neurodivergence competency. https://emergentdivergence.com/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/

Honkalampi, K., Jokela, M., Lehto, S. M., Kivimäki, M., & Virtanen, M. (2022). Association between alexithymia and substance use: A systematic review and meta‐analysis. Scandinavian Journal of Psychology63(5), 427-438.

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry55, 80-89.

Vaiouli, P., & Panayiotou, G. (2021). Alexithymia and autistic traits: associations with social and emotional challenges among college students. Frontiers in Neuroscience15, 733775.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry8(8), 673-685.

Creating Autistic Suffering: CAMHS kills kids

This article was co-authored by David Gray-Hammond and Tanya Adkin

This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.

Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.

Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.

If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.

You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.

What might CAMHS offer?

“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”

Charlotte, CAMHS Professional

CAMHS may offer:

  1. Medication
    • This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
  2. Talking Therapy
    • If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
    • Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
  3. Parenting Courses
    • You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
  4. Parent Blame
    • Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).

” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”

Jenny, Parent of child under CAMHS

What do Autistic children and young people with mental health concerns actually need?

“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”

Charlotte, CAMHS Professional

They need:

  1. Sensory Integration trained Occupational Therapists
    • This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
    • There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
  2. Mental Health professionals that will call out the school system for the trauma they cause
    • Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
  3. Competence
    • As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.

“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”

Jane, former CAMHS Professional

Where does this leave us?

We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.

References

Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.

Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

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.

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.

Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.

Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.

What is it like to need mental health services when you’re Autistic?

According to statistics, 70% of Autistic people have a mental health condition. This is deeply concerning compared to the 25% of the general population that will experience a mental health problem in a given year. Autistic people are also much more likely to die by suicide with current statistics suggesting that the National Autistic Society assert that there is an increased risk of suicide mortality with the Royal College of Psychiatrists suggesting we are nine times more likely to die in such circumstances.

Given these deeply concerning statistics, the causes of which you could author several books on (I know because I wrote some of them), it is no surprise that Autistic people often find themselves in contact with wellbeing and mental health services. Personally, I have been under the care of secondary mental health services (CAMHS as a child and ATS as an adult) for over half of my life.

Both services had their failings, and CAMHS has been in crisis seemingly since it’s formation.

The first thing you need to understand about specialist mental health services in the UK is that they don’t really use a prevention model for intervention. Instead, they use a crisis-driven intervention model that only begins work with you when you are deeply suffering. This was particularly problematic for me as a drug addict; I was perpetually in crisis, but the wrong sort of crisis for professionals to take me seriously.

In my early twenties, I was under the care of a Substance Misuse Service alongside my mental health support. This was remarkable to be between. Like many others, I found that services were never quite sure who should take the lead. It became a self-sustaining cycle of “treat the mental health issues to fix the addiction, fix the addiction to address the mental health issues”. I have witnessed many of my peers fall between the cracks and disappear because of the back and forth of treatment and support.

What has always been quite remarkable for me is the complete lack of understanding of autism in just about every person who said they were prepared to work with an Autistic “service user”. Professionals were often unable to understand my experience, even with the best of intentions behind them. It complicated the feelings of alienation and isolation.

Therapy was always a tricky affair. More or less every single therapy I was offered was based in behavioural methods such as Cognitive Behavioural Therapy (CBT); despite it’s widely known lack of efficacy in the Autistic community. At best, therapy has been moderately helpful, and I have benefited from being able to just talk about the horrible things that have happened to me.

Autistic people experience ALOT of trauma over their lives.

From a more practical standpoint, trying to engage with services has been deeply problematic. I am Schizophrenic. I need to engage, but as an Autistic person, I need predictability and accountability. Professionals are often spotty in their communication, disappearing for weeks at a time, not fulfilling appointment I have made, or being late. This has made engagement quite an upsetting process for me.

While I am “treatment-compliant” I have also found that my medication gets fiddled and altered very regularly. The problem with psychiatry is that it’s so inexact that it barely seems like a branch of medicine at times. Side-effects and constant worry of change sometimes make you feel less willing to engage. I am no exception. Sometimes I have to wonder what’s the point?

Services feel very impersonal. It seems that case-loads for those coordinating our care are so high that we’re lucky that they even remember our names at times. As a person under these services, it is very evident to me just how much they have been defunded by the people in charge. I have to wonder if there would be as many issues if the government appropriately resourced the mental health sector.

There is a point to this. It’s May. Mental Health Awareness Month. Now is the time (apparently) to open up. Autistic people deserve adequate care for their mental health and are not receiving it. Most of us either go private, or accept that things will never be quite as smooth sailing as they could have been. If you’re going to raise awareness of anything this month, think about the Autistic people who are being shortchanged by a service that could very well save their life.

For more of David’s writing, please consider purchasing a subscription to David’s Divergent Discussions.

Don’t forget to head over to the CAMHS resource page and sign the petition to get proper support for Autistic children.

The troubling tale of CAMHS: A service that is not fit for purpose

When we think of mental health services, I’m sure a lot of images are called to mind. Some people might imagine the institutions of days gone by, where people in significant states of dysregulation under the watchful eye of orderlies, nurses, and doctors. Others might think of therapy sessions, sitting in comfortable chairs with a well-dressed person employing Freudian psychoanalytic analysis.

If you’re an Autistic child, you probably don’t know what to picture; it’s likely you haven’t been given access to the service that is meant to support you. This service is the Child and Adolescent Mental Health Service. You probably know it by a shorter name;

CAMHS

According to the Mental Health Foundation, 70% of Autistic people will experience a mental health issue. This already is deeply concerning. Mind asserts that 25% of the population will have a mental health issue in a given year. Why are Autistic people experiencing mental health problems at nearly three times the rate of the general population?

The Mental Health Foundation offers a suggestion for this as well; lack of access to appropriate support. In this case, CAMHS denial of support to Autistic children could very well be creating the mental health issues they are refusing to address.

According to a study from BMJ Open Online only 10% of the children under the care of CAMHS were diagnosed Autistic. Given that all the statistics that exist only really look at diagnosed Autistic children, we should expect Autistic children to represent the majority of CAMHS service users. However, perhaps the disproportionately high rate of mental health issues amongst Autistic people could be more balanced if we were getting appropriate support in the first place.

I have personally written about the negative effects that CAMHS failures had on me, I do not wish for another child or young person to experience what I did. Lets not forget that The Royal College of Psychiatrists suggest that Autistic people are nine times more likely to die by suicide than the general population. At what point do we acknowledge the role that underfunded and altogether disinterested CAMHS plays in these statistics?

Autistic children need robust support from competent and safe professionals. It’s not enough to simply see our children. These services need to create an environment where it is unheard of to refuse access because of an Autistic identity and lack of staff knowledge. Trust me, we know that highlighting their refusal to see us is just the start of this fight.

Part of the problem lies with the National Institute for Health and Care Excellence (NICE) and their guidelines for co-existing conditions in Autistic people. They are very non-descript and offer little meaningful suggestions for supporting us. Many of the suggested “interventions” don’t have a good evidence base or may even do more harm than good.

We need to create a world where being Autistic is more than an afterthought. There are so many of us out there, and yet society at large treats us like the cryptids one might find in the woodland of North America. Except I am not a questionably blurry image of an unknown creature, I’m a living, breathing human being.

Autistic people have lives, they have hopes and dreams, and we feel joy and sorrow. More than anything, we deserve equal access to the parts of society meant to support us in our lives. But when funds are cut to services like CAMHS, Autistic people are the first to become acceptable losses.

Please sign this petition to help make a difference.

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CAMHS ignorance of Autistic children runs deeper than refusing to see them

As I have mentioned in previous articles (which can be found here and here), there is an ongoing petition which at the time of writing has over 180,000 signatures. This petition was started because of the ongoing issue with the Child and Adolescent Mental Health Service (CAMHS) refusing to see or support Autistic children and young people.

This in itself seems bad enough, Autistic people deserve support with their psychological wellbeing as much as anyone else, and with the high incidence of trauma among Autistic people, you can imagine that a service like CAMHS should be a lifeline to us. Instead, we are almost always turned away, and our families are left to work it out with us on their own.

The issue with CAMHS and mental health services in general is deeper than gatekeeping and ignorance, however. It comes down to a sort of cultural competency that most professionals lack when they are working with Autistic service users. What is needed is Neurodivergence Competence.

This particular type of competence was conceptualised by Tanya Adkin, which we then wrote about in our co-authored Creating Autistic Suffering blog series.

Essentially, it requires the creation of Autistic safety via a distinct level of competence in Autistic culture, theory, experience, and a broad understanding of the discrimination we have faced both historically and contemporarily. This is what is missing from CAMHS services.

If CAMHS staff had a good understanding of what being Autistic meant, they would not have to turn Autistic children and young people away from their services. The reason they can not work with Autistic people is due to a lack of competence around neurodivergent experience and culture.

While Autistic peers are going to be in a stronger position to provide this kind of care, it is not something that needs to be gatekept to Autistic professionals. Non-Autistic professionals can achieve this kind of competence by engaging in Autistic spaces and accepting the expertise of those who have actual Autistic experience. It’s possible to attain neurodivergence competency by accepting that, at best, your knowledge is second-hand.

Respecting a person’s life and culture can go a long way to improving the way you work with them.

Until such a time that professionals within CAMHS become competent in working with Autistic and otherwise neurodivergent young people, they will continue to fail them. No amount of mandatory training, frameworks, strategies, or specialist services will equate to the importance of this kind of competence.

So please, sign this petition, and help us start the drive to make a CAMHS that is helpful for everyone.

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Creating Autistic Suffering: Autistic safety and neurodivergence competency

This article was co-authored by David Gray-Hammond and Tanya Adkin

The business of autism is littered with buzzwords and catchall phrases and strategies. Largely dictated by non-Autistic people. Perhaps one of the most common terms you will encounter as an Autistic person or parent/carer to an Autistic person is “Best Practice” or “Framework”. Both of these terms have an intrinsic relationship with each other, with best practice being dictated by frameworks, which then (in a circular leap of logic) is used to justify frameworks again.

Many things that have previously been defined as successful or best practice have later proven to be at best unsuccessful, and at worse, harmful. There is a seeming acceptance that Autistic people exist in homogeneity. Meaning we are often subjected to one-size-fits-all approaches in the form of best practice (strategies, gold standards, behaviour management).

“When you’ve met one Autistic person, you’ve met one Autistic person”

This is one of the mantra’s of the Autistic community, and underlies our reasoning for the rallying cry of “nothing about us without us”. This is completely incompatible with any framework or practice that assumes the position of a general approach.

We also have to consider the issue of who is implementing best practice strategies and frameworks. You could create the most neurodiversity-affirming strategy that could ever be created. If that strategy is then delivered by someone who is medical model aligned, and ableist, it has very real potential to be harmful.

Autism + Environment = Outcome

Environment is not just the physical environment, it also encompasses the attitudes and people that we are surrounded with.

People fear difference, they fear that which they do not understand. From that fear comes poor attitudes, vicitimisation, and bullying. This is true of the experience of any marginalised group. It’s the way human beings operate in our existing culture. It is the culmination of groupthink upheld within the concept of survival-of-the-fittest. There is an assumption that difference means liability and weakness. Education is the only antidote to this.

Our experience is that in order to successfully support an Autistic person you need two things;

  1. Safety
  2. Competency

Let’s consider what we mean by these two words.

Safety

Autistic people rarely feel safe. As we have discussed in previous CAS articles, the world is, by design, traumatic and unsafe for Autistic people for a myriad of reasons. Therefore, key to supporting Autistic individuals is safety; both relational and within the individual. Many dysregulated Autistic people do not feel safe, and struggle to self-regulate. They need a safe, regulated ally to co-regulate with. This is why the relationship and relational safety is so very important. As is ensuring the wider environment is safe, to optimise the feeling of personal safety.

Beardon (2023) talks about the concept of Autistic safety in much more depth than we can explore here.

Competency

Competency can not exist without safety, and safety can not exist without competency. In the context of Autistic safety, one must have neurodivergence competency. A person having knowledge of their own experience and having the understanding and language to advocate for themselves increases safety. This can not be taught without competency.

We have previously spoken about fear and lack of understanding creating poor attitudes and the victimisation of Autistic people. Therefore, the only way to successfully combat the fear that drives these attitudes is through understanding. This understanding needs to take a deeper form than that of basic neurodiversity-affirming “strategies”.

How can anybody be expected to successfully support an Autistic person without a comprehensive, non-pathologising understanding of Autistic neurology and experience? Without this foundation what you get is neuronormativity and subsequent trauma.

What might neurodivergence competency look like?

We are not the font of all knowledge. Nor do we presume to impose our experience and opinions on the wider community (reading is optional). We can only speak to our own experiences.

Feel free to add any suggestions that you may have, or spark a discussion about this.

Here are some of the things we think might be useful;

  1. Awareness of positionality– It is important that a person have the self-awareness to know of their relationship to the topic and person, and be able to challenge their own internal biases.
  2. Understanding of neurodivergent culture– Use of identity-first language, preference for social models of disability rather than the medical model.
  3. Awareness of the harms of the pathology paradigm– Understanding the impact of different paradigms and why the neurodiversity paradigm is vital to empowering neurodivergent people.
  4. Knowledge of historical autism theory– A requirement to understand the history that has contributed to discourse around autism and neurodivergence in general.
  5. Practical knowledge of Autistic autism theory– Monotropism, double empathy, burnout, masking, etc
  6. Comprehensive understanding of the effects of intersectionality– One size does not fit all. We are individuals living at multiple intersections of experience.
  7. Practical and working knowledge of Autistic sensory experience– Understanding issues surrounding interoception and alexithymia.
  8. Co-occuring conditions– We rarely come in one flavour.
  9. Understanding of power imbalances– Understanding how the different power structures in people’s lives impact upon their wellbeing.

This is a non-exhaustive list. Actually, it is way smaller than the current AET good autism practice guidance.

Is it time that Autistic people were given the space and platform through which to create their own “best practice”? Or have we already done that, and it is embedded into Autistic culture? Maybe someone should write it down, or would it just be considered a case of cultural competence?

For further discussions like this, check out David’s Substack and Discord.

BBC’s “Inside our Autistic Minds” documentary has some awful resources online

To put this in context, you can visit the Open University web page where these resources are housed here.

Many people are talking about the BBC’s latest documentary on autism and finding it refreshingly validating. However, the resources that have been put up online by co-producers at the Open University are exceedingly outdated and missing key advances in knowledge of Autistic experience. It is clear that while the documentary itself may be okay, those behind it have learnt very little about the reality of Autistic experience.

The first thing you need to know is that the interactive documents take an obvious deficit based approach. This is evident in the theories they promote and the language used throughout. You can tell a lot about organisations from the way they talk about marginalised communities, and the OU are marking themselves as unsafe and ignorant. Using neurodiversity-affirming language and up-to-date theory is the minimum expectation one can place on an institution that provides degree level training to people who will work with Autistic individuals.

Being more focused, the most obvious issue that stands out to me is the references to Baron-Cohen’s now debunked theory of mind claims. They reference the claim that we struggle to understand the minds of others and understand their feelings as different to ours. This is largely baseless and incredibly harmful. Quoting Baron-Cohen on matters of Autistic experience is like quoting Freud in modern psychology; he is a relic of the past and has not ages well.

I would next like to discuss their claims that Autistic people struggle to communicate and follow social conventions. Even newcomers in the field of Autistic experience become aware of The Double Empathy problem exceptionally quickly. Rather than positioning us as having a deficit in social reciprocity, this theory demonstrates that the issue is one of experience. Autistic people have different cultural experiences to that of non-Autistic people, resulting in difficulties with communication on both sides. Unfortunately, due to the power imbalance in our society Autistic people are labelled as having a deficit and required to conform to non-Autistic communication.

It is not okay that the Open University are upholding this power imbalance.

My final note is that they espouse the view that cognitive behavioural therapy is the gold standard for the treatment of anxiety. Autistic people have been reporting for some time now that due to the double empathy problem and a lack of understanding of Autistic culture and experiences, CBT is more of an exercise in gaslighting than a beneficial treatment for what is a very reasonable response to systemic oppression.

These issues highlight to me the short-sightedness of so-called professionals and academics. You can make all of the wonderful documentaries that you like. If the resources you are sharing are harmful, then your allyship is performative at best.

Society has a long way to go in order to treat Autistic people equitably, but a good first step that will benefit everyone is to consult Autistic voices from diverse backgrounds on Autistic matters. We are not the ones with a deficit. Society is.

Neuroqueering and the Autistic expression of pain

Neuroqueering is a liberational practice. It allows the person to express themselves authentically. But what if authentic expression of Self could cost you your life? What if the people observing you are basing their judgements on a majority group that does not express themselves in the same way that you do?

This is why we need to talk about Autistic people and pain. When we express pain, both emotional and physical, we often embody thar experience differently to the neuromajority. Autistic people have a complicated relationship with pain, and for the sake of simplicity, I would like to consider physical pain.

In hospitals around the world, pain is often recorded using numerical and visual scales. These rely on a person being able to articulate the way they are feeling on a numerical scale and be witnessed to display pain visually in a way that marries up to that figure. One might think it’s a simple system, but if you are Autistic it presents a significant challenge.

Autistic people often experience alexithymia. We struggle to put internal sensations into words. We often can’t articulate what we’re feeling to ourselves, let alone a doctor on a numerical scale. At the same time as this, we often do not express pain in the same way as those of a predominant neurotype.

How many of us find paper cuts unbearable while walking around daily experiencing delirium inducing chronic pain? An example from my own life is the 10 hours I spent walking around with a collapsed lung. I was in agony, but I didn’t respond “typically” to that pain, nor could I articulate its severity in a way that made sense to others.

Enter in the era of the neuroqueer. We are witnessing the birth of a post-normal society. This is a world where Autistic and otherwise Neurodivergent people feel more and more like they can embody their experience in a way that means something to them, and not for the benefit of others. This means that modern medicine needs to also evolve.

Unless healthcare professionals familiarise themselves with the Autistic expression of pain, many of us will be failed (or even killed) by a lack of clinical competency. That is what it is. There is no clinical competency that should not, or does not include an understanding or minority groups experiences of pain.

Neuroqueering is a wonderful thing, but it really does shine a light on the failings that befall Autistic people.

A Schizophrenic woman was dead three years before being found: Here’s why that happened

This article will be upsetting to read.

Click here to read the news story.

Laura Winham was a Schizophrenic woman. I don’t know much about her, but I can imagine what her life might have looked like. Schizophrenia is a peculiar form of neurodivergence. I know from personal experience that this particular neurology can make you question just about every aspect of reality. It’s possible that (like me) she was exhausted from the daily battle to know what  thoughts could and couldn’t be trusted.

Like any neurodivergence, I don’t see schizophrenia as an illness. What we see as the diagnosable condition is actually the manifestation of distress in a neurodivergent brain. It is isolating and scary. When episodes happen, you will give anything for it to be over.

Laura was a human being with a life, a family, and undoubtedly had a lot to offer the world if supported to move beyond the experience of distress.

I think when many people read this story, they imagine it as an unavoidable tragedy. Perhaps they imagine that the problem was with how long it took people to discover her remains. That is not the issue. The issue here is the failure of Local Authorities and mental health teams to provide the support this person needed to survive her distress.

These services are supposed to draw the line. They are the one’s we turn to in our most vulnerable moments. Yet, for many of us, it seems thar we are little more than a nuisance for them. The advent of crisis-driven interventions and defensive practice have meant that people of all ages and backgrounds are dying at the hands of services that couldn’t do their job if they wanted to. The resources aren’t there. There is very little meaningful intervention that services can provide while the system is being defunded and sold off to private interests.

If people want to know why individuals such as myself and Laura have such drastically reduced life expectancies; consider the ongoing distress we experience and the way that distress is compounded by services that offer little to no meaningful support. Laura was very much on their radar, but as you may have heard- you can’t pour from an empty cup.

Her death was 100% preventable. Schizophrenia and other neurodivergence doesn’t have to be a terminal diagnosis. When given adequate support, and when given access to affirmational environments, we are able to flourish. We can experience the joy of human connection and self-development. Sadly, Laura’s development was cut short by inept professionals and the fallout of a government that cares more about profit than people.

This failure will have unending ripple-effects that will go on and potentiate themselves throughout the lives of those who cared for her. This needn’t have happened. This could have been different.

Do not allow this failure to be swept under the rug. Don’t let her death be in vain. Now is the time for action, now is the time to draw a line in the sand, and protect all neurodivergent people from the dangers of a broken system.

Creating Autistic Suffering: Professionals, why don’t they know?

This article was co-authored by David Gray-Hammond and Tanya Adkin

Trigger Warning: Injustice, professionals, Autistic suffering, mentions of theory of mind, weak central coherence, and older autism theory.

We often sit and have conversations about our work. We never cease to be astounded at the lack of basic autism knowledge out in the world. We’re not talking about Theory of Mind or Weak Central Coherence.

You would think after so many years in advocacy we would have become desensitised to it by now. Unfortunately, every day we attend social care meetings, school meetings, meetings with clinical commissioning groups, etc, who are genuinely perplexed by what they call ‘complex presentations’. Let us make it clear, we are not talking about Joe Bloggs off the street, we are talking about those that are considered highly qualified, and are responsible for Autistic peoples wellbeing in one way or another.

This raises the fundamental question, why are these people lacking such basic knowledge as monotropism and double empathy? We are literally talking about consultant doctors, social workers, departmental heads. People with a great deal of power in the lives of their Autistic patients/clients. Yet, whenever we mention the aforementioned theories, or neuroqueer theory, or burnout, masking, shutdown, we are met with blank stares and sometimes even derision. We can never figure out if they think we have come from a different planet or reinvented the wheel.

We take these theories as basic knowledge, however, for the vast majority of ‘autism professionals’ these are radical notions on the fringe of their world. One might ask the question as to why this is, the answer, sadly, is that the system within which they operate is not fit for purpose.

We don’t consider what we do to be ground-breaking. We can never figure out if we are respected or disregarded as being fringe radicals. Some professionals have full-blown identity crises when they encounter Autistic-led theory (yes, there have been tears).

Let us consider the system within which these professionals exist. The external part of the system, which one might consider the world of every day life, is a world of normative violence against those who diverge from the status quo. I’d like to think that no-one enters caring professions to inflict harm on purpose, unfortunately we know this can be the case sometimes. There will always be those within the system who operate with an aggressive disregard for all but their own ego and wellbeing.

Thankfully, we would like to think that the vast majority do not share this overt lack of empathy, and instead inflict harm through a lack of knowledge, these are the people that we can help and work with.

We need to first consider why they have these gaps in their knowledge.

We find this absolutely bewildering, considering the information is readily available from a wide variety of sources. Despite well over a decade of neurodiversity-informed work into Autistic experience, this work has not made it into standard training packages. While we don’t find these theories particularly difficult to understand, it is important to note that we as Autistic people have raging imposter syndrome, and are constantly encouraged to underestimate our own level of expertise and how we are perceived by others in the autism field. So maybe it is complex?

Considering the advent of the internet, and the ability to have an academic library in your phone, or even if you don’t have access to that, there are organisations such as Aucademy (shameless plug) that provide much of this education for free. For us it seems to boil down to three main reasons, but of course as with everything, it’s intrinsically linked and clustered with a whole host of other stuff that creates Autistic suffering.

The first, of course, is the money.

With the recent news of the national autism strategy, and the governments promised investment into this area, it seems that people are very aware of the knowledge gaps and financial issues. Our government in the UK has promised £74.88 million as part of their new policy named “The national strategy for autistic children, young people and adults: 2021 to 2026” (Department for Health and Social Care & Department for Education, 2021), while this could be considered a significant investment, recent figures available indicate that there are over 962,000 people working full time, in state schools in England (Office for National Statistics, 2022), this is exclusive of local authority employees that work directly with children and young people or NHS staff, even if this entire budget was invested in training alone the per head figure would be an offensively small donation at best, with not enough investment to even consider the costs of a trainer, resources, continual professional development, and the time it takes to train people. We could consider it a step in the right direction, we certainly won’t say no to it, but it absolutely does not solve the current crises that the system is facing regarding the care and support of Autistic people.

To summarise, it’s probably a lot cheaper to use the outdated training and save the budget, than it is to pay actual Autistic professionals to teach the new theory.

The second point to consider is the issue of who is providing the training. Who has the knowledge base required to actually train the professionals? The current system seems to operate on the model of ‘the one-eyed king in the land of the blind’.

One study conducted across health, education and care reported ‘the findings expose an acute lack of autism-specific training that has detrimental impacts. At best, this training was based on brief and very basic awareness raising rather than on in-depth understanding of issues related to autism or skills for evidence-based practice.’ (Dillenburger, et al., 2016). There is ample academic evidence readily available that shows education, health and care professionals do not have the knowledge, confidence, or training to work with Autistic people. Research has also found that those with minimal Autism training are then regarded as experts in the field and then become the trainers for the next generation despite the quality of training being severely lacking. This leads us to a position of credibility excess being afforded to poorly trained professionals and perpetuating a never ending cycle (Dillenburger, et al., 2016).

Finally, we have the question, Who defines what is and isn’t expert enough?

Ultimately, there must be more investment in training and development in public sector services so there can be increased expertise and confidence around Autism. We must define a basic national standard for what ‘expert’ is and the training required to meet that standard. Currently, ambiguous definitions place health professionals in a position of potential credibility excess, whereby they are assumed to be ‘expert’ and those receiving support from them may feel unable to challenge or question, this could serve to further exacerbate an already existing power imbalance (Joseph-Williams, N., Edwards, A., & Elwyn, G. 2014).

One might consider that it is time to “throw away the master’s tools” as Nick Walker so eloquently explained in her book Neuroqueer Heresies (Walker, 2021). The current system does not provide the means to overhaul and redesign it, we must look to a future built by those who need the system to survive.

You only have to scratch the surface a little to understand that this issue can’t be solved by throwing money at the situation. The entire system needs an overhaul, from the foundations up.

There is another solution… Listen to Autistic people. Parents are starting to understand, and access resources and community created knowledge (that is lightyears ahead of the academic research). Why are professionals not jumping on this bandwagon with us? No doubt we’ll answer this question in a whole other entry to this series. Models of disability, testimonial and hermeneutical injustice, just a couple of the reasons.

Are professionals at risk of making themselves obsolete? There certainly is a risk of highlighting ineffectiveness in a highly competitive field, is this ego? We’re afraid this conversation will have to be saved for another day. The conversations on Autistic suffering appear to be never ending.

We leave you on this note; “you wouldn’t call an electrician if you had a leaky tap” (Mary Cartilidge, Specialist Independent Social Worker, 2021).

Bibliography

Department for Health and Social Care & Department for Education, 2021. National strategy for autistic children, young people and adults: 2021 to 2026. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026

Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

Office for National Statistics. (2022) School Workforce in England https://explore-education-statistics.service.gov.uk/find-statistics/school-workforce-in-england

Walker, N. (2021) Neuroqueer Heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

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