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Jun 2 2023
Autistic Parenting: Parenthood in it’s infancy

This article was co-authored by David Gray-Hammond and Katie Munday

When Katie and I set out to write today, we knew we wanted to do something new. While there has been a great deal of discussion around parenting school-age Autistic children, Katie and I are both parents to younger children and feel that there is somewhat of a void in discussions around the early years or parenting an infant.

We do not position ourselves as experts, this is more of a journey into our own discoveries, the experiences we have, and sharing in the joys and struggles that so many Autistic people experience as they grow into parenthood.

“Nothing quite prepares you for parenthood, no matter how organised you are and how much the baby was planned.

The late nights, the interrupted sleep, the constant feeding and nappy changing, and the emotions of it all!”

Munday (2022)

Being Autistic and a parent is a unique and wonderful challenge. It represents a leap into unknown territory, and requires us to ask the question of how we would like to have been parented.

What is it like to parent an infant as an Autistic person?

At times being a parent can feel very surreal. There can be a disconnect between the reality of your child’s existence, and the realisation that you have created that child. Many people speak of having an instant bond with their child, but for many of us it can take time to feel that deeper connection. This doesn’t make us bad parents, it makes us human beings who are processing the reality that we are personally responsible for another living being.

Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesn’t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021).

Besides the somewhat philosophical musings of love for your child, there are some technical challenges to being an Autistic parent to an infant.

“He’s just started the ‘terrible twos’ stage – awful name but you get what I mean – and he finds it hard when Daddy leaves for work. So, he throws himself down and makes these noises which prod and poke at my very soul.”

Munday (2022)

Sensory challenges are everywhere as an Autistic parent, there are noises, smells, and for some reason babies are permanently sticky. Where the hell does the stickiness come from? David in particular struggles with sticky things, it is a sensory challenge that turns his stomach. For David, stickiness can remain for days causing him to pick at his skin and repeatedly wash his hands. This is unsurprising given the intersection of OCD with Autistic experience (which David and Katie both share, more on this intersection here and here).

Nappy changes can also be quite upsetting for Autistic parents, issues around cleanliness, olfactory senses, and children who perhaps try to escape during nappy changes can result in a very overwhelming experience. The nappy changing experience can be increasingly exhausting, especially as infants reach an age where they can begin to move around. It is easy to be hard on yourself for being overwhelmed, particularly in a context where you have to “be the calm”.

On the topic of “being the calm”, it can be frustrating trying to demonstrate emotional regulation when it is not something you excel at yourself. Autistic parenting can leave you constantly dysregulated meaning that often you have to mask your struggles for the sake of your children. While neurotypical parents may also deal with this, we have to acknowledge the monotropic split (Adkin, 2022) that can arise from doing this constantly as an Autistic person.

There are a lot of aspects of parenting an infant we could discuss, but in order to give them the space they deserve, we will address them each in separate installments of this series. In the mean time, just be safe in the knowledge that Autistic parents everywhere have different strengths and struggles, and like many things, there is no one-size-fits-all approach to being a parent/carer.

David Gray-Hammond 0 Comments
Apr 24 2023
Intergenerational trauma and the perpetuation of harm

“Mother is God in the eyes of a child”

William Makepeace Tackery

The above quote, whilst pertinent to this discussion, is only half of the picture. Adults control most aspects of a child’s life, and whether or not we realise it, we do this by being the people they depend upon to survive. I often wonder if those who abused me stopped to realise quite how severely they failed me in constructing a child for whom a feeling of safety was a rarity.

Children, like all of us, are socially constructed. The Self is an amalgam of the relationships and experiences afforded to us by the environment. This proves particularly problematic for children in abusive situations. Extensive and prolonged abuse creates a rocky foundation for Self-actualisation and scaffolding of one’s identity.

Much as the child who grows up seeing nothing but shadows does not realise there is a person who casts them, the child who is consistently and extensively mistreated does not view their abuse as out of the ordinary. This is how trauma passes from generation to generation. The normalisation of inflicted pain allows for it to be passed on.

There is a greater complexity to this matter than simply the way our parents and other family members treat us. Services and professionals who are meant to support us often compound the pain we are experiencing. When one is more concerned with the law than with ethics, you are almost definitely contributing to pain.

So, now we have a world where harm comes from all directions. This harm is so consistent and resilient to change that we do not realise its lack of acceptability. We are constructed into adults who believe that things should remain the same because “we turned out fine”.

We didn’t.

It’s not okay.

Our colonial society has taught us that normative violence is the pinnacle of love, and yet so few of us have actually known what real love feels like. We are hurt people who are hurting people. Not because we are fundamentally bad, but because the inflicting of pain in our world is taught to us as a second language.

We have become masters of our own torture.

It is necessary then to explore ways of moving away from this world of normative suffering. We must queer the expectations of human experience in order to build a new society where abuse of the Other is as unacceptable as any other crime against humanity.

We deserve a world where our fundamental human rights are not trampled daily, and more so, our children deserve the opportunity to construct themselves in love and not the crucible of pain.

David Gray-Hammond 1 Comments
Feb 17 2023
Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

David Gray-Hammond 1 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
Jan 30 2023
What purpose does the concept of mental “illness” serve?

As a Schizophrenic person, I see many talk about me as being mentally “ill” and in need of medicine. I do take medication, but for me, medication usage is similar to what one might see within ADHD communities. Medicine is a tool, not a treatment. It allows me to function in environments that are not designed to be accessible to me or my needs. It allows me to live my life without the constant experience of distress, one that I experience without medication because the world is not designed for me.

All suffering is valid, and all neurodivergence can result in suffering. Not because we are ill, but because the world is a traumatic place to live. Neurodivergent people have to face the oppression of all that is different on a daily basis.

“Illness” as a concept within psychological wellbeing a distress is a convenience. It allows professionals to tell us our suffering is unavoidable. If we die by suicide, then we are collateral damage. Victims of a pathology ravaging human kind. If we are “ill” then professionals and leaders do not have to acknowledge their role in a system, causing us distress.

This is what we are actually experiencing. Distress. When we can move forward from pathology models and start to consider that what is happening is a very human experience, we can start to point the blame where it belongs. A world that is violent and terrifying for a huge portion of the population. It is not on us to recover from a mysterious, unquantifiable entity of illness. The world needs to change.

We need to recognise that distress is a human experience, and no two humans have the same experience. Just because my distress looks like the loss of our shared reality does not mean that I am ill. Just because I take medicine that eases my distress does not mean I have a disorder. We don’t assume ADHD’ers to be ill for taking medication. Why do we do it to other forms of medication-assisted neurodivergence?

This ties us up in ideas around med-shaming and toxic positivity. One of the reasons people feel shamed of their meds is because, to them, it feels like an admission of guilt. They weren’t strong enough to survive without becoming ill. It’s not fair to let people feel that way. It’s also unfair to go the other direction and tell people to manage their distress without tools such as medicine. It’s possible to be neurodivergent (and not ill) and still need medication for day to day life.

Neurodivergence is aggressively neutral. It has positives and negatives, and it also has experiences that are not able to be compartmentalised. Truthfully, neurodivergent experience is human experience. The fact that we have to section off different experiences and diagnose them as “illness” or “disorder” fundamentally undermines the neurodiversity paradigm.

Mental “illness” is a deeply flawed concept, and until we fix this, we will not be able to reduce human distress.

David Gray-Hammond 1 Comments
Dec 20 2022
Rat Park: Addiction misunderstood

Johann Hari did a lot for the popularisation of the rat park experiment. This person’s now infamous Ted Talk flung open the conversation that perhaps, just maybe, addiction was not biological in origin. While this attempt to depathologise human experience was admirable, both sides of this argument miss a vital cornerstone that bridges so many gaps in our understanding of addiction.

Rat park suggested that the reason the rats preferred drug-laden water was because of the lack of a meaningful social environment. While I will argue that this certainly plays a role on the perpetuation of addictive behaviours, there is more to be considered.

There have been various retorts, but in my opinion, we need to discuss one thing in particular. We need to talk about trauma.

It doesn’t matter what kind of privilege you have in this world, trauma can set off a domino effect, leading you down a path towards addiction. I am yet to meet any addict who was not trying to hide from pain. Some might argue that not all addicts are traumatised, but I would respond by saying that we need to ditch the normative ideas of what trauma is.

Anything can be traumatic, trauma is relative to the Self, not the external observer.

So, yes, a lack of a meaningful social environment can play a big role in addiction, but I do not believe that is what pulls people into the grasp of active drug addiction. It is what keeps them feeling as though they have no way out. That in itself is a traumatic experience which leads to increased drug use.

This is why we need to constantly be aware of the structures and people that comprise our environments. These components are what scaffold us into active addiction. We respond to our environment, yes, but the factor from that environment that plays the largest role is trauma, not sociality.

David Gray-Hammond 1 Comments
Sep 27 2022
Neuroqueer: Authentic embodiment of mental health

This article was Co-Authored by David Gray-Hammond and Katie Munday

Trigger Warning: Discussion of mental health

It is a surprisingly contentious discussion to have, but the neurodiversity paradigm does not just apply to autistic people and ADHD’ers. Neurodivergent is a broad and inclusive term that applies to any bodymind that diverges from the neuronormative standards of a person’s given culture. This includes, but is not limited to;

Cerebral Palsy

Epilepsy

Down Syndrome

Traumatic Brain Injury

Learning Disability

Foetal Alcohol Syndrome

The list could go on for some time.

Something else that needs to be included on this list is the plethora of psychiatric diagnoses that exist, currently standing at over 300 in the DSM 5. It becomes apparent that there are far more than a handful of ways to be neurodivergent. Let’s not forget about the people who are multiply neurodivergent, existing in the overlap between multiple shared experiences.

This is what neurodivergence is, it is shared experience amounting to identity and culture.

Some of this shared experience is wonderful, there is a beauty to be found in neurodivergent communities. However, some of the experience is truly awful; the truth is that we (the authors of this article) would have to think really hard if we were offered a magic pill that would take away our negative mental health experiences. Things such as;

Intrusive Thoughts

Rumination

Paranoia and Anxiety

Incapacitating Depression

There is a balance to be found between “how much of this is me, and how much of this is something that is happening to me?”. There is a lot more to be said for the effect that our environment has on us.

So, how does one authentically embody the entirety of their neuropsychological experience?

We can embody our full-selves by accepting that sometimes, we need to step away, and allow space to exist with whatever we are feeling at the time. Feelings come and go, it is necessary to observe and acknowledge those feelings without judgement of yourself.

One of the main issues with this is that when you have mental health concerns, we have a tendency to judge that part of our lives as a wholly negative experience. Understandably, it can be very difficult to identify positives when the world focuses on perceived deficit and disorder.

Some of the positives we have found are;

Intense creativity

Self-awareness and introspection

Increased empathy

Intense positive experiences to offset the negatives

Greater attitudes of acceptance

In order to authentically embody our entire neurocognition, we first have to learn to co-exist with all of our experiences. This requires a level of acceptance that not everything will be wholly positive or negative. Self-acceptance is a radical notion, not necessarily in the traditional sense, more so in the way it changes our outlook on life. The boundary between neurology and the mind is so obscure that a change in one can alter the other.

Embracing our negative experiences is only a part of this. We are well aware of how harmful toxic positivity can be. Not everything is okay, and nor should it be, especially when experiencing trauma. We have to learn to co-exist with ourselves, that doesn’t mean we have to find enjoyment in every aspect of our inner and outer world. We need to show up for ourselves by giving our inner-self the same grace that we afford others.

Things aren’t always okay, but with a little self-compassion they can be better. It is an aggressively neutral thing, being neurodivergent.

David Gray-Hammond 1 Comments
Sep 14 2022
Is mental “illness” actually the brain trying to protect itself?

Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.

People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?

Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?

Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.

To me it seems clear where the suffering is actually stemming from, and it isn’t the person.

However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.

What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.

In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.

Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.

So where do we go from here?

We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.

In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.

It’s time to drop the disorder.

David Gray-Hammond 7 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 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
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