creating autistic suffering - Emergent Divergence

May 12 2023

Creating Autistic Suffering: What is Atypical Burnout?

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

The literature around Autistic burnout is in it’s infancy with regards to academic papers, most of what exists comes from lived experience and blogs written by Autistic people themselves. The first academic paper on Autistic burnout was written by Raymaker et al (2020).

This paper describes Autistic burnout as:

“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

The following image from the paper shows how life stressors and barriers to support culminate in the outcome of burnout for Autistic people.

Typically the Autistic person in question will still have multiple demands in their life that require cognitive resources, despite having little to no resources left to give. Life goes on, as they say.

Burnout is widely understood and reported to be misdiagnosed in Autistic people as depression (Raymaker et al, 2020). This isn’t without basis; burnout can look like stereotypical features of depression such as not being able to attend to day-to-day life and losing one’s enthusiasm for things that used to be enjoyable. People experiencing burnout can struggle to get out of bed, although this is not necessarily a defining feature.

We are moving towards a measurement of Autistic burnout, although it is still in it’s very early stages. Papers such as Arnold et al (2023) suggest looking at things like issues with memory, emotional numbness, and difficulty communicating; all of which are usually taken as features of depression. It’s easy to see where the difficulty in differentiating arises.

The key difference in our opinion is that while burnout can lead to depression, it does not start there, and is rarely responsive to typical treatments for depression. Autistic burnout starts with monotropic split (Adkin, 2022) over a sustained period of time. Burnout recovery can take months or even years, and the recommended course of action is usually to remove as many demands as possible, and recharge through interest-led activities.

As Autistic people, we naturally live as demand free as possible. We do this because whether we are aware of it or not, we have to account for the distribution of our cognitive resources.

So, what happens if we can’t stop?

There are many reasons that an Autistic person may not be able to stop and recover; we may not be able to sense our exhaustion (due to interoceptive differences), masking (it may not be safe to practice authentic expression, it may not even be conscious), responsibilities such as child care, work, and home management. We may have co-occurring ADHD.

What we should try and remember is that burnout is not necessarily a set of observable traits that conform to a checklist. It literally is the result of going into an energy deficit on a regular basis.

Atypical Burnout

The use of the word atypical is not to create a neat category for an observable form of burnout. What we are referring to is burnout that might look different to the typical “depressive” understanding. In our experience it is not at all rare or atypical. We come across this time and again.

What atypical burnout can look like is being stuck in a hyper-aroused state, Tanya often affectionately dubs this as “meerkat-mode”, she describes a meerkat-type nervousness, constantly on the look out for danger, unable to focus and self-regulate creating the need for constant co-regulation with another person, and a fear of being left alone. This is sometimes misinterpreted as attachment disorder because of the childs perceived over-attachment to a parent or safe person. We often see this type of response from children and young people in traumatic school environments for extended periods of time.

This is usually accompanied by significant changes in sensory needs, especially interoception. This can result in a loss of sense of self, and reports of voice hearing. Individuals in this state appear to struggle to differentiate between our own thoughts and something external to their own being. This may be related to the high rates of occurrence of psychosis amongst Autistic people (Varcin et al, 2022).

It would be important at this point to mention monotropic spiral. We may internalise beliefs that seem negative and/or delusional in nature. We can seem stuck in a loop that drags us deeper into these internalised notions.

Rituals and routines can become more pronounced and seemingly compulsive, this is usually in an effort to create some attentional resource and ease an overloaded monotropic neurology.

There is a growing under-current in various circles questioning the validity of the diagnosis of Emotionally Unstable Personality Disorder (formerly known as Borderline Personality Disorder). We know that this is commonly misdiagnosed in Autistic people (Fusar-Poli et al, 2022). We also know that there is a huge amount of sexism involved in the identification of EUPD; women out-number men 3 to 1 in the diagnosis of EUPD (Bjorkland, 2006).

When we reverse that lens, men out-number women 4 to 1 in the formal identification of autism (Rynkiewicz, 2016). Considering the high co-occurence of ADHD and EUPD (Philipsen, 2006) and the well-known co-occurrence of autism and ADHD; is it possible that we might be looking in the wrong direction? Could many of these people be experiencing a protracted, atypical, Autistic burnout?

Or is it just a big coincidence?

References

Adkin, T. (2022) What is monotropic split? Emergent Divergence

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Towards the measurement of autistic burnout. Autism, 13623613221147401.1

Bjorklund, P. (2006). No man’s land: Gender bias and social constructivism in the diagnosis of borderline personality disorder. Issues in mental health nursing, 27(1), 3-23.

Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198.

Philipsen, A. (2006). Differential diagnosis and comorbidity of attention-deficit/hyperactivity disorder (ADHD) and borderline personality disorder (BPD) in adults. European archives of psychiatry and clinical neuroscience, 256, i42-i46.

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.

Rynkiewicz, A. (2016). Autism spectrum disorders in females. Sex/gender differences in clinical manifestation and co-existing psychopathology (Doctoral dissertation, PhD Dissertation. Retrieved from Medical University of Gdansk Bibliography Database 2016).

Varcin, K. J., Herniman, S. E., Lin, A., Chen, Y., Perry, Y., Pugh, C., … & Wood, S. J. (2022). Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews, 134, 104543.

Tanya Adkin 3 Comments

Apr 11 2023

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;

Safety
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;

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.
Understanding of neurodivergent culture– Use of identity-first language, preference for social models of disability rather than the medical model.
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.
Knowledge of historical autism theory– A requirement to understand the history that has contributed to discourse around autism and neurodivergence in general.
Practical knowledge of Autistic autism theory– Monotropism, double empathy, burnout, masking, etc
Comprehensive understanding of the effects of intersectionality– One size does not fit all. We are individuals living at multiple intersections of experience.
Practical and working knowledge of Autistic sensory experience– Understanding issues surrounding interoception and alexithymia.
Co-occuring conditions– We rarely come in one flavour.
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.

David Gray-Hammond 4 Comments

Feb 6 2023

Creating Autistic Suffering: Is there a role for social care in the lives of disabled children?

This article was co-authored by David Gray-Hammond and Tanya Adkin
The NHS defines the role of social care as being;
“…about providing physical, emotional and social support to help people live their lives.”
This sounds like a wonderful, albeit vague, concept. Perhaps it would help to look more closely at the law associated with social care. Let’s go back to 1970 and look at the Chronically Sick and disabled Persons Act. For the purpose of simplicity, let’s take a snapshot of what they are supposed to provide for disabled children according to this legislation:
“(a)the provision of practical assistance for the child in the child’s home;
(b)the provision of wireless, television, library or similar recreational facilities for the child, or assistance to the child in obtaining them;
(c)the provision for the child of lectures, games, outings or other recreational facilities outside the home or assistance to the child in taking advantage of available educational facilities;
(d)the provision for the child of facilities for, or assistance in, travelling to and from home for the purpose of participating in any services provided under arrangements made by the authority under Part 3 of the Children Act 1989 or, with the approval of the authority, in any services, provided otherwise than under arrangements under that Part, which are similar to services which could be provided under such arrangements;
(e)the provision of assistance for the child in arranging for the carrying out of any works of adaptation in the child’s home or the provision of any additional facilities designed to secure greater safety, comfort or convenience for the child;
(f)facilitating the taking of holidays by the child, whether at holiday homes or otherwise and whether provided under arrangements made by the authority or otherwise;
(g)the provision of meals for the child whether at home or elsewhere;
(h)the provision of a telephone for the child, or of special equipment necessary for the child to use one, or assistance to the child in obtaining any of those things.”
Unlike the NHS definition of social care, this is a fairly broad and specific piece of legislation that lays out exactly what local authorities are legally required to provide to disabled children. If we look at section 17 of The Children’s Act (1989), the provision of services that can be provided by social care is pretty much unlimited at the discretion of the director of Children’s Services. As long as it meets one of the areas identified in the Common Assessment Framework. The Children’s Act (1989) defines a “Child in Need” as;
“(a)he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;
(b)his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or
(c)he is disabled,”
This essentially means that if health and development is going to be “impaired” or “further impaired” without provision, there is nothing that can not be covered by social care. It is essentially open ended because of the individualistic needs of disabled people and their families. At a glance this sounds wonderful. No disabled child should ever be at a disadvantage. Unfortunately, those that have tried to access these services have had a vastly different experience.
Why is there such a gap between law and practice?
We challenge any parent of a disabled child to ring up the local authority and ask for any of the services outlined above. These resources don’t exist. All that does exist for parents of disabled children is bureaucracy, complaints, gaslighting, invalidation of difficulties, and as the cherry on top; parent-blame. The truth is that one of the roles of a social worker is about the distribution of services and providing the things that the law outlines. When those resources have been stripped away, and there is nothing for social care to give, what is left?
The lens of safeguarding
The policy and ethics of social work is changing. The Working Together to Safeguard Children (HM Government, 2018) document does not even specify anything for disabled children. It’s as though their existence has ended because of the systematic defunding of services, and no one seems to have noticed. Clements & Aiello (2021) argues that this is unlawful and discriminatory; We would agree that completely ignoring the existence of disabled children in a social care capacity fundamentally alters the purpose of social care, without explicit statement of it’s new purpose. Here’s how this plays out;
Parents approach social care to ask for an assessment regarding the provision that the law specifies social care should provide.
Social care automatically apply a lens of safeguarding to said child.
There are no resources to give.
The only function that remains for social care is to focus on the parenting of said child.
Institutionalised Parent/Carer Blame
Parents complain about unlawful restrictions and practice, and get labelled as difficult parents, or serial complainers.
Fabricated and Induced Illness, accusations of exaggerating your child’s difficulties for personal gain, caught up in safeguarding processes due to the absence of due process for disability, or if you dodge all this; you may be able to slink away with no resources, no provision from social care, but still with your family intact.
Truth be told, without the resources we are at the point that if we look at this objectively, we have to ask; what is the role for social care with regards to disabled children?
Ethics in social care
Social care values and ethics (as outlined in the code of ethics document (2021) produced by The British Association for Social Workers) covers three main values;
“1. Human Rights
2. Social Justice
3. Professional Integrity”
None of the above meets any of these values. Not by a mile. Social workers are being set up to fail. They are set up to be the scapegoats for the effects of the governments practice of defunding essential services for disabled children. The short-sightedness of this is immense because the provision of these services for disabled children are explicitly recognised as vital to the health and development of disabled children. If the health and development of disabled children is significantly impaired, it will create a safeguarding issue. Defunding services for disabled children creates more cost-strain on safeguarding services, who are not specialists in disability, and feeds into the culture of defensive-practice, gatekeeping of resources, and parent-blame.
Tanya is routinely approached by parent’s as she works in the field of social care. These parents want advice after reading the legislation about accessing provision. The heart-breaking truth is that she has to tell them there is no provision that exists without it being legally enforced. Parents of disabled children are faced with an ugly truth that there is no adequate support for their child from social care.
What do we do instead?
This is where we have to examine;
What the law says.
Is it enforceable?
What is the cost both financially and mentally?
Do the pros outweigh the cons?
Realistically, in our experience the most effective way to assess, identify, and obtain provision for disabled children is through an Education, Health, and Care Plan (EHCP). That in itself can be an intense and lengthy legal process. We can say one of the benefits is the Special Educational Needs and Disability Tribunal’s (SENDisT) role in the appeals process regarding EHCP’s. They are an external tribunal service that look at the legalities regarding the needs and provision for disabled children. These tribunals are overwhelmed meaning that the EHCP process (with appeals) can take upwards of 18 months. You may need independent reports, legal representation, and an abundance of cognitive resources. While you are waiting for all this to happen you are stuck in the parent-blame cycle that we mentioned above.
The only way that any of this is going to change for the better is for an increase in public money investment into a sector that is, quite frankly, running on empty.
One of the positives is that around 96% of EHCP tribunal appeals end in favour of the parents;
“SENDIST panels upheld local authority decisions in just 207 of 5,600 hearings in 2021-22 – an LA success rate of 3.7%” – Keer (2022)
At first glance this looks like a positive for parents, but it is evidence that local authorities are using the overwhelmed and lengthy tribunal appeal system to defend resources that don’t exist, and avoid their statutory requirement for the provision of services.
As is always the case, disabled people are at the bottom of the pile yet again. Viewed as a drain on societies resources, directly contributing to ableist and discriminatory attitudes that are a pervasive theme throughout disabled peoples lives. Therefore creating more Autistic suffering.

If you would like to play a part in trying to improve one small part of this, click here.

References
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.
HM Government (1989) Children’s Act
HM Government (1970) Chronically Sick and Disabled Persons Act
Keer, M (2022) SEND Tribunal 2022: With a 3.7% LA success rate, what will it take for the Government to finally understand the law matters? Special Needs Jungle
Policy, Ethics, and Human Rights Committee (2021) The Code of Ethics for Social Work. British Association for Social Workers

David Gray-Hammond 2 Comments

Sep 15 2022

Ben Nelson-Roux and Chris Nota: Two tragic tales of systemic failings

This article was Co-Authored by Tanya Adkin and David Gray-Hammond

Trigger Warning: Death, drug and alcohol use, suicide, systemic failure, mental health crisis, inpatient psychiatric care.

The 13th of September 2022 saw the opening of inquests into the deaths of two teenage boys.

Ben

On the 8th of April 2020, Kate Roux forced her way into the room of an adult hostel where she found Ben Nelson-Roux, her son, dead, having been there all day. This happened despite multi-agency involvement and repeated attempts to seek help for her son. Ben was known to be “high-risk” of child criminal exploitation. He was 16 years old. What “high-risk” actually means, is that he was being exploited criminally, and services knew about it. There was no “risk”, this was actively happening. Consultant Psychologist, David Loveday-Simms described him as having a “chaotic and risk taking lifestyle”, this being part of a long history of victim-blaming. He also stated that Ben had started smoking cannabis at age 12. Where was the support for a psychoactive drug user at such a young age?

Loveday-Simms interviewed Ben shortly before his death, and concluded that “he was not a slave to anyone”. Demonstrating a complete lack of understanding of child exploitation. It is frankly terrifying that a CAMHS consultant psychologist demonstrates so brazenly, a lack of understanding around power-exchange, coercive control, modern day slavery, and child exploitation.

That’s not the worst bit.

Loveday-Simms said “I agreed with Mrs Roux that Bens accommodation posed a significant risk to Ben” upon his final encounter with Ben’s mother, before his tragic death. It appears that Ben had been housed as a known child, vulnerable to exploitation, with a history of drug use, and documented attempts to take his own life, in an unsupported hostel for homeless adults. His mother feared that he would die within weeks if correct support was not put in place.

The consultant psychiatrist told the coroners court that Ben would use cannabis and other drugs heavily, which left him paranoid. The night before he died, Ben’s mother had begged for him to be sectioned under the mental health act.

Ben was Neurodivergent, and according to his mother had been struggling with “ADHD, severe mental health issues, and drug and alcohol abuse for years”.

Chris

On the 7th July 2020, a young man fell to his death from a bridge in Southend-On-Sea. It is reported that following a deterioration in his mental health, due to the death of three relatives, he had turned to cannabis to calm himself. It wasn’t Chris’ first visit to this bridge. Paramedics had previously found him at this same bridge on June 27th 2020.

“Coroner Horstead said to Dr Ball: “On June 29th your colleague said you couldn’t keep him [Chris] safe. Was that a view you agreed with?” Dr Ball replied: “That was a view of the whole team that we couldn’t keep him safe at the time.” The coroner said: “Your colleague said there needs to be a hearing for funding. It was unanimous as a team that you couldn’t keep Chris safe in the community?””
Essex Live, (15/09/2022) Click here for more

Chris was Neurodivergent. It’s reported that Chris’ mother Julia had expressed concerns that she felt they were not meeting the needs of her son. She felt he needed specialist autism services. His mother feared that he would die without the correct support. Specialist services were not made available to him.

Chris was Autistic with a learning disability, a drug user, and had previously been sectioned under the mental health act for psychosis. He was 19 at the time of his death.

Discussion

These two deaths were almost three months apart to the day, and 231 miles in distance. Two neurodivergent teenagers. Two vulnerable people who tragically died.

Stories like these are not news to us. They don’t always result in death, sometimes it results in prison, sometimes in long-term hospitalisation under the mental health act. They all follow a similar thread. I don’t think we would be doing either of these young people justice, or the people we work with, if we didn’t acknowledge how far back the misunderstanding of neurodivergence and systemic failings go. It starts in healthcare with lack of healthcare access and a lack of up-to-date knowledge. Parent and victim blaming plays a big part. Discrimination based on stereotypes surrounding young males with “behavioural issues” also play a significant role.

The mess and the underfunding in the education system. The minefield that are Education, Health, and Care Plans (EHCP’s). Lack of social workers with specialist knowledge in neurodivergence, or indeed ANY professional with specialist knowledge.

This should not have to happen in order for people to realise that the system is broken; but that isn’t even happening, there seems to be no change on the horizon. We have a national problem, loads of Neurodivergent people are suffering unnecessarily. In our experience, services just don’t know how to support neurodivergence. Services aren’t designed or accessible for neurodivergent people.

But what would we know, after all, we are just neurodivergent people.

To read more about issues raised in this article, please see the Creating Autistic Suffering series on this website, the first article of which can be found here.

David Gray-Hammond 1 Comments

May 25 2022

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.

David Gray-Hammond 0 Comments

May 17 2022

Creating Autistic Suffering: Clustered injustice compounds minority stress in Autistic experiences

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

Trigger Warning: Injustice, mental health, systemic oppression, minority stress, fabricated and induced illness, stigma.

“The state creates the rules and dictates the processes to be followed: processes that fragment, silo, and compartmentalise, and in doing so, generate the complexity that is the root cause of clustered injustice.”
Clements, L. (2020)

As disabled people not only do we have to consider how our disability affects us inday to day life, but we also have to consider the amount of ‘life admin’ that we encounter daily. Policies, procedures, and legal processes are in place to supposedly serve us, but what they actually serve to do is make an awful lot of these aids and services inaccessible.

We have the Equality Act (2010) that serves the purpose of making it unlawful to discriminate against anybody that has a “protected characteristic”, including disability. At a glance this sounds amazing, and very forward thinking, but does anyone actually know what is involved in bringing a disability discrimination claim against an institution or person?

It’s a resource heavy, and convoluted process. It may even involve solicitors.

Do disabled people have the spoons, resources, or money to access the laws that are put in place to protect us? How can we expect the average disabled person to navigate these systems, and bear the financial and psychological burden.

If you have a disabled child, you have the Education, Health and Care Plan (EHCP) process. Which in its basic form is supposed to involve a holistic assessment of a child to identify their needs and silo them into four broad areas of special educational needs.

Sounds simple, right?

For any parent who has been through this deeply traumatic process (because that’s what it is), it does not do ‘what it says on the tin’. It is again a resource heavy and convoluted legal process that may even put you on the radar of social care, and a victim of institutionlised parent carer blame (IPCB) (Clements. L, and Aiello, L. 2021).

These are just two examples of the many processes that barricade Autistic people and their families out of equitable and fair treatment. They never come one at a time…

So, what is clustered injustice, and why do we need to know about it?

Cluster definition

“a group of similar things that are close together, sometimes surrounding something.”
Cambridge Dictionary

Injustice definition

“the condition of being unfair and lacking justice, or an action that is unfair.”
Cambridge Dictionary

Given these definitions, clustered injustice, put simply, refers to legal problems that are encountered by disadvantaged people, whereby the issues are often not singular but ‘clustered’.

While it refers to legal proceedings, it can also be experienced by Autistic people when navigating law, policy, process, and procedure, etc.

Hypothetical case study

Fabricated and Induced Illness (FII) guidance can lead to clustered injustice (Gray-Hammond, D and Adkin, A. 2022). For example, a mother may be seen to be making “frequent and vexatious complaints” (Royal College of Paedatrics and Child Health, 2021) while trying to have their child formally recognised as Autistic, and subsequently access appropriate support. In this case, the mother has greater knowledge of their child than the professionals, but is subjected to IPCB by being accused of FII.

The diagnostic process for a child is a multi-disciplinary approach that spans education, health and social care. Depending on the age of the child, mental health services may also be involved. It’s done this way so that professionals are able to gain a holistic view of the child, and accurately assess them. However, we know that services are woefully underfunded and basic knowledge about Autistic experience is sparse, stereotypical, and loaded with pathologising rhetoric (Dillenburger et al, 2016).

Lets say the professionals get it wrong, lets say the child has an ‘atypical’ presentation (which basically means the assessing professionals do not have sufficient knowledge of Autistic experience in order to be assessing the child). Consider that you have to point this out in the form of a complaint. You are potentially complaining to, health, social care, and education, maybe even different departments in each of those areas. This means that in order for a parent to have their complaint holistically considered they have to complain to separate departments, following separate processes which could easily be considered vexatious and frequent, when in fact there is no other holistic solution available to them.

This is clustered injustice.

Autistic people have similar experiences with accessing disability benefits, healthcare, the justice system, and many more areas of life. Institutions and policy are designed in such a way that the holistic nature of the barriers we face are fragmented, siloed, compartmentalised, and ultimately minimised. At worst it is then used as a tool to further exacerbate an already existing power imbalance. Clustered injustice is a weapon, used by those in power against disadvantaged groups.

What is minority stress and how does it relate to clustered injustice?

Minority stress refers to the unique stressors that are experienced by minority groups as a result of their segregation from society at large by stigmatisation and discrimination.

“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events. Social structure facilitates this process through acts of discrimination and social exclusion, which are added stress burdens that socially advantaged groups are not equally exposed to.”
Botha, M., & Frost, D. M. (2020)

It is simple then to see that there is a direct and causative relationship between clustered injustice and minority stress.

What can be done to mitigate this?

Unfortunately, not a lot at this time. However, community connectedness does relieve the effects of minority stress in Autistic people (Botha, M. 2020). In short, the collaborative problem solving that can arise from finding your community and sharing the psychological burden with those that understand, and sharing resources and the experience of those that have come before you is invaluable.

As it turns out, we’re not anti-social loners after all!

If you see this or experience it, call it what it is. The more people that have a name for it, and actively speak out against it, the more awareness there will be of this particular form of injustice. This oppressive system relies on us not being able to articulate or describe the barriers that we face, the onus is put on us as Autistic people, to identify our needs and advocate for them. So now you have one more tool in your self-advocacy toolbox.

Knowledge is power.

Bibliography

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

Botha, M., and Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.

Clements, L. (2020). Clustered Injustice and the Level Green

Clements. L., & Aiello.,L (2021). Institutionalising parent carer blame. https://cerebra.org.uk/wp-content/uploads/2021/07/Final-Parent-Blame-Report-20-July-21-03.pdf

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.

Equality Act (2010).

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

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/cluster

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/injustice

David Gray-Hammond 3 Comments

Jan 25 2022

Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying

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

Trigger Warning: This article contains strong language and discussions of fabricated or induced illness, ableism, discrimination, bigotry, child abuse, medical abuse, systemic abuse, institutionalised bullying.

Fabricated or Induced Illness (FII) is defined by a set of “alerting signs”, written in guidance produced by the Royal College of Paediatrics. From the horses mouth itself-

“FII is a clinical situation in which a child is, or is very likely to be, harmed due to parent(s) behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health and neurodevelopment is impaired (or more impaired than is actually the case). FII results in physical and emotional abuse and neglect, as a result of parental actions, behaviours or beliefs and from doctors’ responses to these. The parent does not necessarily intend to deceive, and their motivations may not be initially evident.”
RCPCH Guidance, 2009 (updated 2021)

Parent blame and insinuations of FII are becoming common place, and this is where it gets interesting. Let’s talk about what isn’t FII. It isn’t Munchausen’s Syndrome by Proxy, and it isn’t Factitious Disorder Imposed Upon Another (actual mental health diagnoses). It isn’t a diagnosis, there is no diagnostic criteria, it doesn’t appear in any diagnostic manual; in fact there is no evidence to support the need for FII to even exist as a form of child abuse. Yet as advocates and professionals working with neurodivergent children and their families, this is a daily occurrence for us.

FII was created by the Royal College of Paediatrics. There own guidance states that-

Literature in this field recognises that there is a gap within the existing evidence-base surrounding the incidence and prevalence of PP [Perplexing Presentations] and FII. We acknowledge that there is a lack of data in this field, in particular for perplexing presentations, and the exact incidence and prevalence is therefore unknown.
RCPCH guidance, 2009 (Updated 2021)

This exists despite the fact that in the past eight years, there have been no deaths involving children where FII is even mentioned, except for two cases, one by heart failure (from a pre-existing condition) and one by suicide (Bilson, 2021), it’s probably a fair assumption to say that it was likely caused by a failure to accommodate the child’s needs. Had professionals spent their time investigating these children’s needs as opposed using parent blame as a way to alleviate them from their duty of care, these children may very well be alive today.

What are professionals looking for when they suspect FII?

Not all of the “alerting signs” are relevant to Autistic children, but in particular the following are quite concerning-

In the child

• Reported physical, psychological or behavioural symptoms and signs not observed independently in their reported context

• Unexplained impairment of child’s daily life, including school attendance, aids, social isolation.
RCPCH Guidance, 2009 (updated 2021)

In the parent

• Parents’ insistence on continued investigations instead of focusing on symptom alleviation when reported symptoms and signs not explained by any known medical condition in the child.

• Inappropriately seeking multiple medical opinions.

• Child repeatedly not brought to some appointments, often due to cancellations.

• Not able to accept reassurance or recommended management, and insistence on more, clinically unwarranted, investigations, referrals, continuation of, or new treatments (sometimes based on internet searches).

Not letting the child be seen on their own

• Talking for the child / child repeatedly referring or deferring to the parent.
RCPCH, 2009 (updated 2021)

If you know anything about the Autistic experience, you will know exactly why the above specifically targets Autistic children and their parents (who are often Autistic themselves). Where does this consider masking? Where is the consideration for situational mutism, Autistic burnout, extreme anxiety (often experienced by Autistic children). This is not withstanding the fact that most “professionals” have not even heard of Autistic burnout let alone have more than a generic and stereotypical understanding of Autistic people that is based on outdated and largely debunked theories.

It gets worse.

The next instalment in this shitshow of a pamphlet (that is directly responsible for the removal of scores of children from their families, and the untold trauma that comes with such things), sounds like it was directly quoted from a right-wing news channel-

Parents who struggle with the management of their child may seek an inappropriate mental health diagnostic justification in the child such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD).

Material gain includes financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.
RCPCH guidance, 2009 (updated 2021)

I bet these were the type of people who were having wine and cheese parties by accident in the middle of a pandemic.

Now, we’re not going to waste our spoons on explaining why this is utter ableist, classist, racist horseshit (really all the forms of bigotry you can think of). What we will say, is that for anyone who has filled in a DLA form, submitted the plethora of evidence needed to justify a childs disability, for what is effectively a small amount of pocket money compared to the actual cost of caring for a disabled child. Preferential parking and preferred housing? Clearly these people are so far removed from any semblance of qualification to discuss or have any impact on the lives of neurodivergent people, or disabled people in general, that they buy into the propaganda peddled that disadvantaged people are trying to steal resources.

Back to our broader discussion.

Here’s another golden nugget of guidance-

“The second motivation is based on the parent’s erroneous beliefs, extreme concern and anxiety about their child’s health (eg nutrition, allergies, treatments). This can include a mistaken belief that their child needs additional support at school and an Education Health and Care Plan (EHCP).”
RCPCH guidance, 2009 (updated 2021)

Big issue with this one. Schools are effectively financially penalised for seeking further SEN support for children. It’s common place for schools to have to fund the first £6000 of an EHCP. £6000 that doesn’t actually exist. Not withstanding the fact that school teachers are not qualified to decide whether or not a child is “fine in school”. If this was the case, why do we even require needs assessments in the first place?

Then there is the level of paperwork that is required to support a child with significant SEN, and the staff hours that takes. All of this results in schools routinely downplaying children’s needs and presentations, not knowing what they are looking for, and assuming that if little Johnny isn’t smashing up the classroom, he must be fine and there are no needs to meet.

Medical professionals are relying on these reports of “fine in school” from underqualified mainstream education professionals to then decide that it must be FII, that the parents are making it up… and the cycle continues.

So, the pièce de résistance in this spectacle-

“Autism Spectrum Disorder (ASD) in the parent may underpin fixed beliefs about the child’s ill-health.”
RCPCH guidance, 2009 (update 2021)

So there you have it people, if you are Autistic, if you seek an EHCP, if you seek specialist advice (because the NHS is woefully underfunded, and uneducated on Autistic experience), if your child masks, if you seek a private diagnosis, if you challenge professionals, if your child is situationally mute, and (finally) if you are poor. You are ticking a lot of boxes as a child abuser; as profiled by the RCPCH guidelines on Fabricated or Induced Illness.

How does this contribute to institutionalised parent/carer blame?

Institutionalised parent/carer blame was researched by Professor of Law, Luke Clements (2021). The following is a quote regarding the research report.

“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the Education Secretary to address this issue as a matter of urgency.”
Rt. Hon. Sir Edward Davey, MP, Patron of the Disability Law Service, 2021

The reports key messages were as follows-

“National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.

The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.

Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.”
Luke Clements, 2021

We can then see how the rhetoric of parent/carer blame is perpetuated. We have education, health, and social care, working symbiotically to impart accusations of FII onto parents and carers of disabled children, absolving themselves of responsibility for that child’s wellbeing.

If we were cynical, we could comment on how this has been beautifully engineered for one sole purpose; TO SAVE MONEY. If there are no needs identified, then there is no responsibility for education, health, or social care to meet those needs.

If we intimidate and gaslight parents and carers enough, they may well stop advocating for their child’s needs. Is this the social care equivalent of off-rolling? Where schools and local authorities threaten parents with social care referrals and fines if their child does not attend school, or offer them the alternative of home education, absolving them of any legal (and financial) obligations for the child’s education.

All of the above heavily contributes to Autistic suffering by using these convoluted systems to deny access to much needed support and accommodations. It’s an inside joke amongst Autistic parents and carers that they are waiting for a FII referral.

“One whiff of neuro- and they’ll have you for FII”

It’s all based in the ableist assumption that Autistic people are incompetent and incapable child-abusers. Maybe the commonly held (and debunked) theory that we don’t have empathy contributes to this?

Seeking support for your disabled child has effectively been criminalised.

What can be done about it?

Here’s the tricky part, because these accusations, and infringements on private family life grind us down. Really the only thing that we can do about it is to tick every box that’s listed as an “alerting sign”.

Request an education, health, and care needs assessment from your local authority.
Be prepared to appeal every unlawful decision.
Seek professional advocacy.
Keep all communication in written format.
Keep everything as evidence.
Get very good at filing, very quick.
If you are able to access private specialist assessment, do it.
If you are being accused of FII, consider commissioning an independent social care assessment.
Expect parent/carer blame.
Do not take it personally.
Do not give up.

We realise there is cost involved in the above advice, and it’s not cheap. Unfortunately, it’s just another fine example of how policies and systems are designed to penalise poor and disabled people. There are a few things you can do if you are on a low income though.

Learn as much as you can! The fight for your children’s right’s and your own never goes away, the sad fact is you will always be battling to get what your child needs and is legally entitled to, you just get better at it and it becomes less overwhelming over time.

Evidence– You can submit subject access requests to schools, local authorities, doctors etc. This should give you evidence of your child’s difficulties and what has been done to meet their needs.

Legal Aid – If you are a low-income family, you may be able to access legal help to appeal local authority decisions regarding EHCP’s. Legal help will also fund independent reports, usually Educational Psychology, Speech and Language and Occupational Therapy, I have known them fund independent Social Care reports before however it is not common place and you will have to put together a good argument as to why it is necessary from the perspective of an EHCP. You can access legal aid information here.

Make use of free resources – IPSEA have a range of templates for all things EHCP related and a free helpline although, it can be difficult to secure a spot. Look for free Q&A’s on Facebook. Scour the files section of face book groups.

Finally, access the Autistic community online, many of us have been down this well-trodden path before and can give some really sound advice. Many of us are professionals working within this field.

It’s not always called FII, mostly it is implied rather than explicitly said. The default position is always that there is a fault with the parent/carer. Especially if you are Autistic.

Bibliography

Bilson, A. (2021) Education Magazine – Episode 6 – Fabricated or Induced Illness. Sinclaires Law. YouTube.

Clements, L (2021) Institutionalising parent/carer blame. Cerebra.

Davey, E (2021) Institutionalising parent/carer blame. Cerebra.

RCPCH guidance (2009; Updated 2021) Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH. https://childprotection.rcpch.ac.uk

Institutionalising parent carer blame

David Gray-Hammond 3 Comments

Tag Archives: creating autistic suffering