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Children are being seriously injured for displaying “challenging behaviour”

All statistics mentioned in this article are taken from The ICARS Report into the use of restrictive practice in England, information take from The Equality and Human Rights Commission, Human Rights as detailed by the United Nations, and The Royal College of Psychiatrists.

There is a growing belief in the world that the use of corporal punishment, ranging from smacking a child through to more archaic forms of punishment, are unacceptable. While this is a good thing, to me it shines a light on the hypocrisy that is currently at play.

While remaining a global phenomenon, restrictive practice is still widely used, and in particular it can be found in specialist settings where people work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does harm to us.

This becomes deeply problematic when we consider the way that restrictive practice takes place. While used as an intervention for perceived “challenging behaviour”, it would be more accurate to view restrictive practice as an intensive intervention for dysregulation.

Allow me to take a step back and consider the nature of such practice. Restraint is the use of techniques that restrict a person’s ability to act freely. Often when we consider such techniques, we imagine people being held to the floor, but we can see not just the use of mechanical restraints, but also chemical restraints in healthcare settings. Such restraints are employed by the use of drugs that inhibit a person’s ability to act freely.

As you can see from the off set, restrictive practice represents a significant issue in the human rights and ethics of working with disabled people. The hypocrisy lies with the people who speak out against corporal punishments while employing the use of restraint. While such practices are supposed to be “last resort”, 78% of those included in the ICARS report reported that their child had been a victim of restraint prior to the age of 10 years old.

Another concerning statistic is the number of children who were harmed by restraint. The ICARS report found that 97% of respondents were harmed, while restraint was only recorded 59% of the time (breakdown of statistics below). My interpretation of this data is that restraint is being performed dangerously, in a punitive context, and improperly recorded.

Taken from The ICARS Report into the use of restraint in English schools

The implication of children experiencing punitive restraint flies in the face of a society that is trying to move away from corporal punishment. Such brazen abuse of the position of trust and power that schools are privileged to have is simply unacceptable. Children have died and been significantly traumatised by restraint. This is, quite simply, not a practice that should be occurring in this day and age.

We must also consider the fact that restrictive practice feeds into a self-perpetuating loop, in which the child is constantly being exposed and re-exposed to the trauma of restraint. Dysregulation creates challenges, which are approached with restraint, causing trauma that once again results in dysregulation. It is a self-fulfilling prophecy of sorts that is fueled by societies pervasive desire to assimilate children’s behaviour into an “acceptable” standard.

According to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the UK has made a commitment to create an inclusive education environment and protect disabled people from all forms of violence and abuse. I would challenge our governments commitment to this convention on the grounds that the punitive and improper use of restraint is a direct violation of both of these commitments.

According to a report made in 2018 for the UNCRPD, 75% of Autistic students, and 70% of those with a physical disability reported bullying in school, compared with 50% of those with no disability. How can we reduce interpersonal bullying among students peers in an environment where adults are actively harming children with restrictive practice? We have, in effect, normalised the mistreatment of disabled children on the grounds that disabled embodiment is a challenge to be intervened on rather than addressing issues with the wider environment that are creating traumatised and dysregulated children.

The Universal Human Rights Index specifically mentions concerns over the UK’s use of restraint on children, stating;

The Committee is concerned that the State party is still using techniques of restraint that aim to inflict deliberate pain on children in young offender institutions, including to maintain good order and discipline

UHRI (Accessed May 3rd, 2023)

This indicates that the UK government is failing in it’s duty to prevent torture and ill-treatment of it’s citizens. This raises further questions about the fact that this failure specifically pertains to disabled children, a notably marginalised group in our current society.

The truth of the matter is that children’s lives are being endangered, if not by the restraint itself, then quite possibly due to it’s correlation with the 9x increase in suicide risk seen amongst Autistic people (RCPSYCH, 2018) and the significant over-representation of Autistic people in demographics that have been victims of restraint.

Disabled people deserve compassion and equal access to the world. All of the time that we are holding the threat of dangerous restrictive practice over their heads, this has not been achieved. we need to create a world in which disabled people thrive, are not met with the threat of pain and violence. Restrictive practice needs to be seen for the toruturous practice that it is, and not normalised as a means of forcing the behaviour that institutions arbitrarily believe is acceptable.

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Neuroqueering education through rhizomatic community networks

This article exists, in part, thanks to the ongoing discussions in my Discord server. You can join by clicking here.

When considering the pervasiveness of neuronormativity, nowhere is it more visible and prevalent than in the education system. Educational institutions place a great deal of pressure on students to engage with behaviour policies, uniform policies, curriculums; more so, they define not only how one should learn, but how one should embody that learning and the ways we think about that learning.

Schools are, for the most part, completely ill-equipped for students who can’t conform to the restrictive ideals placed upon them by a school and institution that functions as a machine, creating apostles of our neoliberalist economy. Far too many children are traumatised and subsequently excluded from their human right to education because of the normatively violent approaches of the education system.

So how might we subvert and redesign education?

I have spoken recently of rhizomes. Vast networks of points that are connected while remaining independent of each other in terms of their survival. Such rhizomatic communities take a post-structural approach to the creation of community and the sharing of knowledge by ditching hierarchical notions of milestones and targets and instead allow us to take an interest-led approach.

Allowing communities to form around mutual interest creates different points within the rhizome. Through exploration and knowledge exchange, intrinsic connections form through the understanding that all knowledge is inherently connected. This is the basis of how one might queer the education system.

By allowing people to engage with interests and learn through that which they are intrinsically motivated to explore, the natural connections between points in the rhizome can be used to expand learning into other areas while maintaining and interest-led approach. Such a world would have no need for institutional education as knowledge creation and sharing would be a community endeavour.

Everyone would be the educator and the learner.

Some may worry about the standard of education that a person can achieve outside of the traditional institutional structure; truthfully, how much of the knowledge you hold now was attained within the walls of a school? Most learning is community based. School systems offer a very limited basis of knowledge that often seems pointless thanks to a lack of context.

Education should not be reliant on normative standards of teaching. We should be empowering each other to share the knowledge that we gain over a lifetime. Such a world would take us away from the self-reliance of our current society while allowing us to retain our individuality. Through a rhizomatic network of learning, we create a multiplicity in our individual existence that can not be achieved within the confines of the institution.

For access to bonus articles from David, check out David’s Divergent Discussions. Click here for 50% off your first year.

Creating Autistic Suffering: Autistic safety and neurodivergence competency

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

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

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

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

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

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

Autism + Environment = Outcome

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

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

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

  1. Safety
  2. Competency

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

Safety

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

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

Competency

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

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

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

What might neurodivergence competency look like?

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

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

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

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

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

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

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

Post-normal childhoods: Neuroqueering education and play

Neuroqueer theory is often discussed in the context of neurodivergent adults. While a helpful tool in the liberation of Neurodivergent people, constraining it to just this section of society limits its potential. Neuroqueer theory, at its root, is a theory that intends to liberate all people rather than just the select few. It does this by teaching us the malleable nature of identity, culture, and the Self.

I personally I have discussed my idea of the Chaotic Self; a Self that is ever shifting and changing. The Self emerges and re-emerges from itself as a factor of our experiences and relationships with the environment and those within it. As we acquire new ways of rationalising and contextualising those experiences, we also learn new ways to subvert our own meanings and understandings, allowing us to fundamentally queer our very existence.

So, how does this apply to childhood education and play?

Current “traditional” education and play is built upon normative standards. Those who provided the knowledge it is built on were unaware of their privilege and acted to uphold systemic oppression, regardless of whether they intended to or not. What we have had in both historical and contemporary contexts is normatively violent and creates a power imbalance between the student and the teacher.

Every aspect of our growth and development is regulated and controlled through the milestones we are supposed to achieve, the times we are expected to achieve them, and the curriculum that a given authority feels is necessary to learn.

The issue with this approach is that it expects all children to adhere to these standards. If one can not achieve under normative standards, we are deemed to be disordered and troubled. We find ourselves undergoing behavioural intervention and medicated treatments in order to achieve what is important to others rather than ourselves.

So, how do we move beyond this cult of normality? Can one be an apostate of normality and still achieve great things? I propose that the starting place is simultaneously a thing of beautiful simplicity, with the potential for profound complexity. We encourage children to experiment with language.

Language defines every aspect of our understanding of the Self. Words we acquire from others move forward to become the words we apply to ourselves. The first thing we must do is gift children language. All language. Access to language is essential to our relationship with ourselves. We then must consider how a child might be empowered to explore and experiment with that language.

Children should not be taught to use descriptive language based on someone else’s view of them. We should allow them to identify themselves in whatever way they please. This can be done as a form of play, and as such, it is a vital part of our development.

Once a child is comfortable with playing through language, we can begin to work with them to consider how they can subvert and reimagine the meaning of language. Once a child is free of objective definition and allowed access to the fluid nature of subjective meaning, they have an infinite number of ways to engage with their Self. It sounds deceptively simple, but the effect of truly unlocking language to a child could be immeasurably life changing.

It teaches us the importance of what we say to children.

This is but one way of applying neurofuturism to childhood, or perhaps more accurately, post-normalism. If we are ever to live in a neurocosmopolitan world, we must explore the ways in which we raise children, and consider them helpfulness of standardising and regulating their development.

In the meantime, let children play with their language and identity. You might be impressed by the way they explore themselves, and it might even teach you a thing or two as well.

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.

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