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Jul 3 2023
Is autism a disability?

When we think about autism, a number of things may (or may not come) to mind. The question of whether Autistic people are disabled is one that has been discussed for decades, with medical professionals largely being the ones to hold the power over how this answer is reached. Many may think of Autistic people as living tragic and unfulfilled lives, while others will talk about us having “superpowers” and advantages over others. The fact of the matter is that neither of these answers capture the full range of Autistic experience.

What is a disability?

There are two commonly cited models that define how we think about disability (there are more than two, but for the purposes of this article we will think about the two most common).

  1. The Medical Model of Disability:
    • In terms of disability theory, this model posits that disability arises from physiological issues. In other words, a problem with the body gives rise to a body that can not full participate in society.
    • With respect to autism, this means that Autistic people are viewed as having improper development of the brain that leads to deficits when compared to a non-Autistic cohort.
  2. The Social Model of Disability:
    • The social model positions disability as the result of systemic discrimination and lack of accessibility.
    • According to this model, Autistic people are not disabled by autism itself, given that autism is a socially constructed diagnostic category, but rather by a world that is designed for a very specific groups of individuals (for example, neurotypical people).
    • This means that disability can be accommodated through the use of accessibility features that make the environment better adapted to the Autistic person.

The problem with these two models of disability is that they do not entirely fit autism as a diagnostic category. While it is true that many Autistic people can feel less disabled with accommodations and changes to the environment, things such as an aversion to bright lights will still be an issue on sunny days. Regardless of this, it does not mean that a person has a disordered brain, hence neither model is a perfect fit.

Dynamic Disability

Autism itself doesn’t exist, what does exist is Autistic people. People rarely remain exactly the same over a period of time, and as such, neither does disability. For this reason, I refer to being Autistic as a dynamic disability. This means that a number of factors have to come together to define our strengths and struggles, and the role they play in our lives from day to day.

Some day’s we may feel very capable and achieve what we need to, other days might be more difficult and we may feel more like a disabled person.

The problem is that disability has been conceptualised in society as a fixed point, meaning that when we have those good days, it can lead to imposter syndrome and make us question our own experience of being Autistic.

Functioning Labels

You will likely have heard people talk about “high-functioning” and “low-functioning” autism. You may have heard of levels 1, 2, and 3 autism spectrum disorder. These terms supposedly describe the level of disability we experience, but again, are misleading. Functioning labels are intimately associated with one’s economic status. Those deemed low-functioning are classed as such because they are unlikely to ever be self-reliant, a key target of neoliberalism. Those deemed high-functioning are the ones whose quirks and outside-the-box thinking can be used by the economic system to drive profit and growth.

There are further issues with these labels for disability. Those Autistic people who are viewed as having higher support needs often live a life of limited autonomy with people around them assuming they can not contribute to their own lives, or that they would even want to. For those deemed as needing less support, it is often a life of struggle and traumatic self-reliance within a system not designed for them that can be expected.

But is autism actually a disabilty?

Simply put, yes. Regardless of what models of disability are used, or what amount of support a person might need, Autistic people experience disability related issues. This can come in the form of ableist discrimination, hate crime and & mate crime, improper accessibility to the environment, or issues that can not be accommodated for.

The problem is that disability has been situated as an inherently bad thing. The truth is that disability, much like autism, is neutral. It isn’t inherently good or bad, it is a fact of life. Some days we’ll feel better about it than others, some days will be harder than others. The idea that disability is a negative thing that needs to be removed from discourse around autism is ableism. We are positioning disability as something that harms our humanity.

In other words, avoiding the topic of disability inadvertently dehumanises disabled people, including Autistic people. This is why we need a more inclusive world, and it is why we need to normalise disabled embodiment from a young age.

David Gray-Hammond 1 Comments
Apr 16 2023
Neurodivergence, disability, and the politics of existence

Neuroqueer theory has been the single most important idea to emerge from the academic circles of neurodiversity into my own life. I say that with a hint of irony; neurodiversity is my life. It’s all our lives. Neurodiversity is a fact of human existence. Yet, to not perform to a cultures normative standards, neurotypically, is a disability.

The cold, hard truth of being neurodivergent is that you are disabled. This doesn’t mean that there is an issue within your body that requires fixing. It doesn’t mean that you are worth less. It does mean that the world will be a harsh place.

This is particularly problematic for those who engage in neuroqueering. The further away from that pinnacle performance of neurotypicality that we get, the more labels of pathology that society will paste onto us. To diverge from normality is to have a relationship with the world that is, at best, indifferent to your pain and, at worst, violently hateful.

In my own opinion, this has to do with the way that society frames deviation from the status quo. As soon as we decondition ourselves or fail to assimilate, we are dehumanised and discriminated against. We are told that our experiences are not valid and that our pain is our own fault.

This neatly absolves the powers that be of any responsibility for the suffering they inflict on neurodivergent people. Disability (to my mind) arises not only from obstacles in the environment but also from volatile and harmful relationships within that environment.

One of the most disabling things about being neurodivergent is the way that society frames our existence.

Our existence is able to be framed as such because there is a distinct power imbalance in our world. It’s not enough to tackle ableism and autistiphobia. We must also dismantle the bigotry and oppressive system that have infected and affected our society en masse.

You can not tackle disability as an issue without tackling white supremacy, homophobia, transphobia, or any form of bigotry. We have to decolonise in order to make the world accessible. All of these forms of hatred and discrimination play a role in the way that neurodivergent people are framed by society.

This is the nature of difference. Because society has a toxic relationship with difference and diversity, we are disabled for not assimilating.

The time has come to not just queer ourselves, but queer society. By abandoning the false hierarchies created by our capitalist systems in the west, we can embrace the anarchy of bringing the fringe to the centre. We can start this in our own communities by Embracing neuro-anarchy and breaking free of the normativity within our own circles.

The first step to decolonisation is to look inwards at our own environment.

We need to consider what parts of neurodivergent culture are helpful and what parts have arisen from the politicising of our existence. We can give rise to a society that is kinder to all, a world where difference is not a disability, but the first step is to realise our own role in that oppression.

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David Gray-Hammond 0 Comments
Mar 23 2023
Autistic people should not have to educate their therapist

I have had extensive therapy, as one might expect for a recovering drug addict who is also Schizophrenic. I have had mindfulness therapy, Acceptance and Commitment Therapy. I’ve had Cognitive Behavioural Therapy, trauma therapy, psychoanalytic therapy. I’ve also had courses of therapy that use mixed approaches. Thanks to the NHS here in the UK, I have recieved all this for free. The problem is that while free, it was time limited.

Here is why that has been a problem for me as an Autistic person.

So often, therapists have said that they are able to work with my admittedly rather complicated profile of experiences. In particular, they will often claim that they have experience working with Autistic clients. The problem is that fundamentally, they don’t have a clue. This has left me with a difficult decision; educate the therapist or endure hours of inappropriate therapy.

People don’t come to therapy because they are in a good place. In the UK, a lot of therapy is gatekept behind “thresholds” of distress. Most (if not all) NHS trusts currently operate on a framework of crisis-driven intervention, which means that a person has to be in crisis before they receive support. Why then are we expecting Autistic people to waste their spoons and therapy sessions teaching a therapist what life is like as an Autistic person?

When we approach a therapy session, we come with the expectation that the therapist is the expert. Being faced with a professional who has little knowledge outside of awareness courses and mandatory training not only places the onus on the Autistic person to educate them; it undermines our confidence in the effectiveness of therapy. Having a level of confidence that therapy can work is vitally important to the process.

Therapists who do not understand Autistic experience will often employ behavioural strategies and infer thought patterns that are overtly incorrect. This can leave Autistic people feeling like therapy is more of an exercise in gaslighting than something there to help them. When faced with this, Autistic people will often feel forced to explain Autistic experience to their therapist. This means that time is wasted, and the process itself can often be intensely triggering, making any crisis worse.

This is why therapists need to spend time engaging with the communities that they work with in not only a professional context but also in the context of being the learner to willing educators. It is not okay for therapists to expect free labour from those in crisis.

This is perhaps one of the biggest accessibility issues in the world of therapy. Until such time that it is resolved, Autistic people are going to be left out in the cold during their time of greatest need.

David Gray-Hammond 1 Comments
Jul 19 2022
Neuroqueer: Gender Identity and Autistic Embodiment

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

Neuroqueering means to subconsciously queer yourself by way of your neurology. One’s neurology is queer and therefore so is one’s Neurodivergent or Disabled embodiment (Walker, 2021). So, what does this mean for gender?

There appears to be a large overlap between LGBTQ+ identities and being Autistic, including being trans, non-binary or otherwise gender divergent (see references below). Autistic folk grow up with our own distinct culture, language and communication. Perhaps due to this that many of us are disinclined to take up prefabricated gender identities.

Our understanding of gender (like many things) is queered by our Autistic neurology. We simply do not embody non-Autistic gender. If we are male, we are Autistically male, if we are female, we are Autistically female. Whatever gender we are (or are not), we embody this Autistically.

Even cisgender Autistics have a tendency to construct our own versions of our assigned gender. “Traditional” gender roles often make little to no sense to us, especially for those of us in same gender and/or polyamorous relationships. We extend the boundaries of gender, devising a path toward neuroqueerness (Katie Munday discusses this in their article on neuroqueer cartography found here).

Exploring gender off the beaten track, starts with us engaging differently in social learning. A lot of us take an anthropological stance, studying those around us so we can better shield ourselves, challenge norms, and live more authentically. Through this deep thinking, structuring and restructuring we find where we belong, or more typically we create where we belong. We understand structures as entirely malleable and make identities which make sense for ourselves, not for other people (see Doing gender the Autistic way).      

Some of us see the binary boxes of ‘male’ and ‘female’ and run for the hills – we are both, neither, in-between, some of us are spinning around in our own genderless galaxy. ‘Male’ and ‘female’ are strange arbitrary categories used to oppress those of us who are not men, or not considered masculine enough. So, many of us look at these categories of gender and throw them out the window – they are meaningless to us.

We are neuroqueering the very perception of the self.

References and further reading

Barnett, J.P., & Maticka-Tyndale, E. (2015). Qualitative exploration of sexual experiences among adults on the Autism Spectrum: Implications for sex education. Perspectives on Sexual and Reproductive Health, 47(4), 171–79. https://doi.org/10.1363/47e5715

Bush, H.H. (2016). Self-reported sexuality among women with and without autism spectrum disorder (ASD) (Unpublished doctoral dissertation). University of Massachusetts.

George, R., & Stokes, M.A. (2016). Gender is not on my agenda: gender dysphoria and autism spectrum disorder. In L.Mazzoni, and B,Vitiello (Eds.), Psychiatric symptoms and comorbidities in autism spectrum disorder (p.121-134). Springer.

George, R., & Stokes, M.A. (2018). Gender identity and sexual orientation in autism spectrum disorder. Autism, 22 (8), 970-982.

Van der Miesen, A.I.R., Hurley, H., Bai, A.M., & de Vries, A.L.C. (2018). Prevalence of the wish to be of the opposite gender in adolescents and adults with autism spectrum disorder. Archives of Sexual Behaviour, 47, 2307-2317.

Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and postnormal possibilities. Autonomous press.

Walsh, R.J., Krabbendam, P., De Winter, J., & Begeer, S. (2018). Brief report: gender identity in Autistic adults: associations with perceptual and socio-cognitive profiles. Journal of Autism and Developmental Disorders, 1-9.

David Gray-Hammond 5 Comments
Apr 7 2022
Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

David Gray-Hammond 0 Comments
Feb 19 2022
‘Disabled’ is not a dirty word

By Katie Munday (They / them) – Autistic academic, activist and advocate.

There have been too many moments in my life where people have non-disabled-splained to me how to talk about my own embodiment and experiences. People question, or try to correct my language with good intentions; but the basis for their use of person first language (“people with disabilities”) is nothing but uncomfortable, ignorant and down right awful.

People who advocate for person first language believe that Disabled people are separate from, and therefore ‘more than’, their Disabled embodiment. This is problematic as it centers the Disabled person as a person who is suffering, who has an affliction, a disease, a disorder or illness. It takes all the joy from atypical existence and it makes rags of the otherwise beautiful quilt of human diversity.

Us Disabled people are not more than our bodies or neurologies and neither should we be. Neurotypicality and being a so called ‘abled-bodied’ person is not the goal here.

‘Normal’ is not quite as aspirational as many people would have us believe.

Some Disabled folk do use person first language, these people are usually ashamed about and even hate their bodyminds. Some of us struggle with these things on and off throughout our lives and acquired disability is a process which tends to come with a lot of sadness, regret and blame too. However, many more of us are happy and proud to be who we are. Our disability and /or neurodivergence is a massive part of who we are – it is inseparable from our very essence, the very things which make us, us. I couldn’t do anything in a non ADHD / Autistic / OCD fashion because all of these differences effect all of my life. They’re not compartment-able or controllable.

Non-disabled people love policing how we talk about our own experiences, cultures and bodyminds. Even when they do start an open-conversation with us they still disagree. They have this need to control our narrative: ones they don’t understand, usually have no stake in and seemingly don’t care about.

My opinions and understanding of myself, my life and my experiences are not up for debate.

I am Neurodivergent.
I am Autistic.
I am Disabled.

All of these differences and identities are the ways in which I make sense of the World around me and my part in it (including the way I am treated by others systemically and individually). And none of these are shameful terms.

‘Disabled’ is not a dirty word.

Katie Munday 3 Comments
Nov 29 2021
Marginalisation, discrimination, and the fear of being a hashtag

We’ve seen it happen countless times in recent years. A person from a marginalised demographic (usually BIPOC, disabled, or a combination of the two) is murdered by a figure of authority.

Usually the police, a teacher, or carer. They take lives with impunity.

The Internet is rightly outraged. Protests and riots occur. Online campaigns are started. Just like that, a persons identity is reduced to a hashtag.

This isn’t the fault of the outraged, the victimised, the disheartened. This is the fault of the perpetrator. Hashtag campaigns have shone lights into places that are often ignored. But still, the marginalised live in fear.

Fear of being killed.

Fear of being erased.

Fear of becoming another twitter trend.

No human being should have to live like this. Every human being has a fundamental right to life. In fact we have 30 human rights. I can’t name them all, no one ever taught them to me. It’s fundamentally wrong.

Marginalised groups are treated as disposable in a system that values eurocentric, able, capitalistic humans over all else. For me as a disabled person, I live every day acutely aware of societies disdain for me. Every part of the system is built in a way that says “you are not welcome here”.

I have a level of privilege thanks to my skin colour. I still face risks as a disabled person. I would hope that my chances of becoming a hashtag are reduced, but they are still more than my non-disabled peers.

When an entire life can be reduced to a hashtag, something is very wrong. We are all born with potential, more potential than capitalist society would have you believe. That potential can so easily be snuffed out and become just a name on the internet.

We need to dismantle not just the prejudice in the system, but the prejudice in ourselves that holds up a system that discriminates by design. Each of us harbours prejudice. To fix society, we first have to fix ourselves.

People complain about world governments like they are the sole perpetrators of a broken system. The system isn’t broken, it was built that way.

All the time that system exists, no government in the world will fix this situation.

David Gray-Hammond 1 Comments
Sep 7 2021
An open letter to parents of Autistic children regarding Spectrum 10k

Spectrum 10k, what is it?

Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.

This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.

S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.

Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.

What happens next?

You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.

Here’s what our kids need.

They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.

Simply put, autism + environment = outcome.

The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.

Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.

Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.

“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”

Simon Baron-Cohen (S10k project leader) [Source]

This means, that this research, could possibly be used to prevent the birth of Autistic babies.

Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.

There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.

10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.

So this means, they are either being very arrogant, or they are lying.

How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?

The answer, very clearly, is it won’t.

So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.

Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.

Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.

It gets worse.

When speaking at a UCLA symposium in 2018;

“If we know the mechanism, then we can prevent it. Cure the autism”

Daniel Geschwind [Source]

They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.

Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.

And that is why we suggest #BoycottSpectrum10k.

This letter was a collective effort from the team at #BoycottSpectrum10k

For more information on this campaign, please follow our social media on Twitter, Facebook, Instagram, and TikTok.

To read our full joint statement and sign, please visit here.

For another article about the concerns of the Autistic community, click here.

David Gray-Hammond 7 Comments
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