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May 25 2022
Reflection on Texas school shooting from my Autistic perspective

Trigger warning: mass shooting, school shooting, murder, death of children and adults.

Today I woke up to the news that 19 children and two adults had been murdered in cold blood. This grotesque reality is a fear that parents in the US live with every single day.

Every time they send their child to school, they have to wonder if that kiss goodbye is the final kiss.

What of the bed sheets that will never be slept in again? Do their rooms become a mausoleum regret and indescribable pain? Do we just stand in silence while the United States of America, the supposed land of the free, is victimised by a gun lobby that cares more about its right to carry an instrument of death, than the death that is being inflicted upon the innocent?

When will the world step up and say enough? Sadly, I suspect not today.

My Autistic heart is broken. The shattered pieces speak of pain, and yet my pain is nothing compared to that of the parents who will never hold their children again.

Will we allow the memory of those whose lives have been stolen to be tarnished by those who would have you believe that gun control is not the answer? I say no. Blood is on the hands of the American gun lobby. The time has come for them to repay the lives they have stolen with their indiscriminate and misinformed campaign of death.

For the memory of those who are gone too soon, we must fight this campaign of terror, and say “no more”.

Not one more life can be taken.

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 18 2022
Autistic Substance Use Survey 2022

Below is a survey on Autistic people and substance use. The aim is to collate data anonymously on the use of drugs and alcohol in the Autistic community, and use that data to write a report that will be published on this website.

The hope is that these insights may help Autistic people better advocate for themselves with regard to this topic.

None of the questions are mandatory, but the more that you can answer, the more data we will have to look at.

David Gray-Hammond 1 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 4 Comments
May 11 2022
Double empathy, solipsism, and neurotypicality

Why do interventions such as Applied Behavioural Analysis and Positive Behavioural Support exist? Why is it that our world uses neurotypicality as the standard from which neuronormativity is drawn?

Fundamentally, I believe that it comes down to the double empathy problem. Autistic people have a different style of communications to those with a predominant neurocognitive style in their culture. This creates a breakdown in communication, and due to the power imbalance in neuronormative culture, neurotypicality is considered superior, we are so often labelled as “disordered” or as having “deficits”.

But why is this happening? Where does this neuronormativity arise from?

I believe that to understand neuronormativity, we must first understand Solipsism. Solipsism is the belief that only the self and its experiences exist. A solipsist would believe that their experiences are the only experiences, essentially reducing others and their experiences to sub-human automations.

This is where I believe that neuronormativity arises from. A kind of strange solipsism.

In my opinion, while neurotypicals have been using ideas such as theory of mind to accuse Autistics of lacking the ability to know another’s mind, neurotypicals have been so unaware of the existence of neurodivergent experience that they will inflict pain on us to “help” us conform to their standards.

To put it another way, do most neurotypicals believe not only that their experience of the world is the “right” experience, but also the only experience of the world?

This means that when neurotypicals witness Autistic communication, they experience a kind of cognitive dissonance that results in their lashing out in the form of behavioural interventions, because they fully believe that the only way to exist is by the weird neuronormative standards that are enforced upon society.

What even is neurotypical?

That changes depending on the cultural environments, but in this sense it can be considered the predominant neurocognitive style in a given culture (Walker, 2021).

Neurotypicalilty is essentially a performance. It is a style of existing.

This effect has created a power imbalance wherein regardless of the number of neurotypicals in the room, they are still considered the gold-standard.

To me, it doesn’t seem like Autistic people are the ones needing an intervention.

David Gray-Hammond 1 Comments
May 9 2022
Mental health and the neurodiversity paradigm

When considering the landscape of mental health, we also have to consider the normalisation of stigma and the dehumanisation of those who are struggling.

Since the advent of psychiatric medicine, mental health concerns have been described in pathological language. What if we used the language of the neurodiversity paradigm? How would it impact the wellbeing of those with lived experience if we recognised “mental illness” as a form of neurodiversity on a global level?

In my own personal experience, recognising my voice-hearing as neurodivergence has helped mitigate some of my distress. Knowing that my brain is different, rather than broken removes the pressure to fix myself, and instead has encouraged me to engage with talking therapies that are teaching me to co-exist with my personal experiences.

Don’t misunderstand me, there are still plenty of times when I feel broken. Such is the episodic nature of my mental health.

Reframing our mental health experiences as natural variation of minds, rather than sub-human errors in a computer may help many people by removing the self-blame that so many of us in the mental health community experience.

Rather than “you are broken and need fixing” we can consider the much more nuanced approach that there are infinite variations of the human mind, living in a world designed for one predominant style of brain. It seems natural to me that such a world would be incompatible with many people, and as such we experience suffering.

No longer do we take medicine to fix a broken mind, but instead to support our wellbeing in a world that causes our suffering.

Of course, we should mention access to diagnosis. Many of us miss out on our part in the neurodivergent community because our diagnosis is wrong or incorrect. While the general attitude in neurodivergent communities is that diagnosis is a privilege and not a requirement, we need to push to make sure that people acquire appropriate diagnosis in a timely manner. We need to make sure that it is an accessible option for all.

Eventually, however, I hope, a world will exist where diagnosis is a thing of the past. Where we can live in a neurocosmopolitan society such as that posited by Dr. Nick Walker. A world in which no one group has privilege. A world where we can all co-exist. A world a long way off perhaps, but still a world I will fight for.

Once we start realising that diagnostic criteria for ALL mental health is based on the neurodivergent person in distress, we have to become curious about what these neurodivergent minds would look like in a world that didn’t cause them to suffer. What a beautiful neuroculture we could build. A curious thought to say the least.

David Gray-Hammond 2 Comments
May 3 2022
A reflection on the nature of Autistic joy

What is Autistic joy?

Is it different to neurotypical joy?

Honestly, I can’t answer the second question. I am Autistic, and always have been. The neurotypical mind is a puzzle I can not solve.

I can however discuss what is Autistic joy is to me. Inspired by the recent livestream I hosted with Aucademy.

I can consider the moment that I discovered the Autistic community. It was as if my whole life I had been a stranger in my own land, and finally I had found my kin.

The joy within me can not have justice done by words alone, but I will do.my best.

For me, Autistic joy is like getting lost in the woods, but the woods are so beautiful that you never wish to be found. You wish to remain lost in that moment for eternity. For a moment, time stands still and all you can feel is the overflowing euphoria of love and self-acceptance.

This is what Autistic joy is to me.

So no, I don’t know if it’s different for another neurotype. I hope not, because I believe all people should get to feel that moment of the purest joy at least once in their life.

My Autistic joy is the best medicine I have ever taken, it’s like being gifted a cutlery drawer full of every spoon I ever lost in my attempts to fit into a world that hated me.

I truly hope that every Autistic gets the opportunity to feel the purity of that moment.

David Gray-Hammond 2 Comments
May 2 2022
How the shame cycle barricades us from recovery

They say in life that nothing is certain, but if anything is, then it’s the fact that shame will deny us entry into recovery.

I’m going to consider this from the perspective of addiction recovery, although it applies to recovery from any psychological trauma. I merely choose addiction recovery for this article because it makes the illustration of my point much more simple.

Consider the nature of addiction. A person’s needs are unmet. Due to the trauma that arises from this they seek to escape their pain, and in doing so turn to a path of addiction.

Addiction is seen by society as a moral failing, and so is the behaviour exhibited by those under the influence of their addictions. People are chastised for their addiction which creates shame.

This is a fatal mistake.

Shame is like poison to an addict. Shame in itself creates more trauma from which their is even more need to escape. Which in turn results in further, or even increased engagement with their addiction.

This in turn leads to further chastisement, and thus the cycle perpetuates.

This cycle can, and often does, continue until fatal consequences occur.

In order to help an addict break away from active addiction and enter recovery, we need to remove the shame that comes with addiction.

This takes many forms such as trauma-informed treatment, adequate socioeconomic support with things like housing and finances, and an adequate support network.

It’s not just about being nice to addicts, it’s about putting them in a safe place to rediscover their love and pride for themselves. This applies to more than just addiction.

Shaming addiction and other forms of psychological trauma is an act of violence that can both directly and indirectly kill people by barricading recovery. Until society drops the moral judgements, shame will continue to kill indiscriminately.

David Gray-Hammond 1 Comments
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