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Sep 30 2023
Autistic people are not framed well in the media: Why?

When we think about autism in the Autistic community, an infinite number of moving points coalesce to create countless individuals with a shared experience. One might argue that to be Autistic is to meet a certain set of limited criteria, but many of us understand that autism is more than a simple diagnosis. You can then understand our frustration with how our existence is framed in the media. From news outlets to Hollywood movies, our lives are interpreted in less than favourable terms time and time again.

Understanding the Autistic performance

Titchkovsky (2007) discusses disability as something we do. In this context, we not only are disabled; we do disability. Being Autistic can be viewed in much the same way. We do autism, we perform autistically. In my book A Treatise on Chaos I explore the Self as a moving a fluid entity. To belong to the Autistic community is to embody the Self in an Autistic way.

This means that to perform an Autistic embodiment, we are not constrained by another’s idea of what being Autistic is. We define autism as much as autism defines us. There is no wrong or right way to be Autistic.

How does the media undermine the Autistic performance?

“They finally knew what was wrong with their shy, diffident son who would one day shoot and kill 20 children and six adults…”

McCoy (2014)

The above quote is from a Washington Post article linking autism to mass murder. I wish I could say such stories are rare, but sadly the media is full of them. It seems that every time a mass atrocity is committed, there is a rush to pin the blame on neurodevelopmental differences or mental health issues.

This sensationalist and reductive approach to Autistic people strips us of our humanity. It not only others us, it creates a level of fear and stigma surrounding our existence. Media reporting like this makes us a potential threat to be contained by society rather than free agents with the potential to contribute to our world.

Why does the media portray Autistic people in this way?

The world fears inhuman acts. When atrocities happen, it is easy to look for a way to distance ourselves from them. One need never fear becoming a monster if what we see as monstrous is fundamentally different to us. Historically, autism has been a diagnosis for the improper human; thus, if Autistic people are the ones committing monstrous acts, then the every day person can rest in the knowledge that they will never become one.

There is more to it, though. Autistic, as an identifier, has gone through a sort of pejoration as our community fights for equitable rights. As we become more vocal, those with privilege slowly guide the consensus on the meaning of autism to become less human, less than human, inhuman. If we can be made into monsters, it is less likely that our rights will become undeniable.

How do Autistic people take back the meaning of autism?

Autistic people must seek to subvert pejorative ideas by demonstrating their undeniably human lives. We must work to restructure the foundations of our society so that the every day Autistic person can be openly Autistic in defiance of dehumanisation of our existence. We must show those fluid and moving parts of ourselves in a way that annunciates our inability to be contained by stigma and hatred.

More than anything, we must perform our Autistic performance in such a way that we reverse the pejoration of our identity.

David Gray-Hammond 0 Comments
Sep 29 2023
Autism and the double empathy problem: The barriers to effective support

Autism is spoken of in various ways by wider society, however there exists a pervasive theme to most discussion on this topic. Society treats autism as though it were a separate entity inhabiting the bodymind of an otherwise neurotypical person. It is approached as something that obscures the true Self rather than the defining factor in our human experience that it is. Autistic people are the only part of autism that actually exists, so why are they denied the opportunity to communicate their experiences and lead the way on knowledge creation about autism? How can we use the double empathy problem to understand our exclusion from knowledge creation?

What is the double empathy problem and what does it mean for Autistic people?

The double empathy problem was first spoken of by Damian Milton in 2012. It positions Autistic people as a minority cultural group. The essential basis of the double empathy problem can be understood as thus;

“Milton’s theory of ‘double empathy’ proposes that Autistic people do not lack empathy.

Milton argues that Autistic people experience the world and express emotions differently to non-autistic people. We communicate, experience and display emotions, interact with others, form relationships, and sense the world around us, differently to non-autistics. That doesn’t mean that we don’t have emotions or feel empathy.

But it makes it difficult for non-autistic people to understand and to empathise with us. And us with them.”

Reframing Autism (2020)

This then allows us to consider the cultural differences between Autistic populations and non-Autistic populations. Much as a white person may fail to understand the lived experience of racism, non-Autistic people fail to understand Autistic experience and vice versa. This absence of context presents an issue for the Autistic person when trying to communicate within power structures that favour non-Autistic ways of embodiment and existence. We are labelled as being in deficit because of a pervasive neuronormativity within non-Autistic populations.

How does neuronormativity unbalance power dynamics for Autistic people?

Neuronormativity draws it’s position largely from western colonialism (although cultural standards of normativity do differ from group to group) and the belief that one must assimilate into the majority population, becoming a “productive citizen” within ones socioeconomic system. It creates a strangely reductive notion of one either being helpful or a burden. The existence of neuronormativity can be view as logically fallacious in it’s origins; specifically, it is situated within a fallacy known as “argumentum ad populum”. This means that the argument to support neuronormativity uses it’s acceptance by the majority as it’s evidence base.

This is of significant concern for minority groups. Normative values are often used to suggest that one’s humanity is based within a contained and isolated set of values and styles of embodiment. If one need only make an appeal to the masses for something to be true, then almost any dissent from minority groups becomes “inaccurate” or “without evidence”. Thus, the power structures of society favour a predominant neurocognitive style over anything that diverges from it.

How does the double empathy problem obstruct Autistic people from communicating their experiences?

The power imbalances that exist have created a world within which Autistic people can not be correct about their own experience. If one asserts that natural Autistic communication is valid, then the majority can simply view that knowledge as inaccurate by virtue of it coming from a minority group rather than the majority. The double empathy problem means that not only does neuronormativity exist, but the dominant group can’t ever fully empathise with how harmful it is.

Not only can dominant groups not understand our experience, neuronormativity tells them that neurocognitive styles outside of their understanding are something that need to be corrected. This allows for the mass administration of harmful interventions such as ABA, PBS, and quack cures like MMS. We are effectively dehumanised by the majorities refusal to step outside the comfort zone of their own worldview, leading to potentially life threatening consequences.

What does the double empathy problem mean for Autistic people in practice?

This gulf between cultural experiences couples with neuronormative attitudes allows professionals in various multi-disciplinary fields to ignore our voices when we advocate for ourselves. In practice, professionals will try to enforce their own opinion of what is needed by the Autistic person rather than allow the Autistic person to speak their own truth. It is the effective oppression of Autistic people contributing to the minority stress that we experience as a minority cultural group.

  • Healthcare professionals don’t listen to us
  • Social care professionals don’t listen to us
  • Education professionals don’t listen to us

It is a list that I could add to in perpetuity. We are talking about weaponised testimonial injustice that keeps us in a disadvantaged position.

What can Autistic people do to combat the fallout of the double empathy problem and neuronormativity?

At this point I might direct your attention back towards the aforementioned minority stress that we experience. This can be understood as the cumulative effect of multiple sources of hostility and oppression with out society. The effects of the double empathy problem and neuronormativity have long allowed this minority stress to run wild. Interestingly, Botha (2020) found that community-connectedness acts as a buffer against this.

“The minority stress model is a social research and public health model designed to help us better understand the lived experiences of people of oppressed communities. The model posits that within the social structure of a particular culture or society, certain (oppressed) groups experience greater incidents of minority stress (based on race, sexuality, gender, disability, etc.) in the form of prejudice and discrimination. As a result of those experiences, members of oppressed communities experience greater negative health outcomes than majority group communities. This leads to large health disparities.”

Caraballo (2019)

Botha (2020) found in their doctoral research that where Autistic people were connected with Autistic communities, there was an improvement in wellbeing in nearly every domain explored. It stands to reason then that perhaps the increased confidence in self-advocacy that comes from connection with other Autistic people allows us to mitigate the effects of minority stress. For this reason I strongly believe that one of the most effective things that can be done for newly discovered Autistic people is signposting to their community.

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David Gray-Hammond 0 Comments
Sep 17 2023
Reclaiming Neurofuturism: Understanding neuronormativity and the containment of Autistic experience

Much of western society is predicated on the idea that knowledge consists of a variety of objective truths. When we hear the word “disability” or “autism” we are guided to understand the word in a particular way. This unfortunately fails to capture the dynamic and highly contextual nature of human understanding. Neuronormativity, then, is an attempt to remove context from human neurological experience.

The creation of worlds

Knowledge is socially constructed. Each word we speak carries with it the effect of each interaction we have had with society. When I state that I am Disabled or Autistic, I inevitably will have a different understanding of what I mean than the meaning you will draw from it.

The space between the context of our understanding can be conceived of as the space between worlds. While our world may carry striking similarities, we can never objectively prove that they are the same. Rather than occupying a shared reality, we create contextual worlds that may cross boundaries with each other in places.

Neuronormativity and the elimination of context

When I consider normativity that is directed toward our embodiment and experience of the world, I see the death of context. Neuronormativity is that clandestine effort to label some contextual worlds as “wrong” and bolster some as “closer to the truth”. What is important here is that while neuronormativity claims an objective truth to one’s neurocognitive machinations, no human ever achieves the objective truth that it claims to hold.

Paradoxically, neuronormativity creates a world devoid of context, where one can never actually satisfy the truth of the matter. All humans fall below standard to some extent. Of course, some of us have more privilege than others, but importantly, we are guided to always strive to achieve an inaccessible truth. Regardless of our contextual world.

The contextual nature of Autistic experience

Perhaps one of the most pervasive and harmful applications of neuronormativity’s erasure is within the lives of Autistic people. Autistic experience is highly contextual, with an infinite number of ways that people can respond to and understand it. Neuronormativity seeks to erase any context within the Autistic experience that positions our existence as something other than a problematised one.

Each Autistic performance creates a contextual world of meaning. What we summarise as shared experience is actually the liminal spaces where one person’s contextual world crosses into another. In this sense, each Autistic person represents a point within a rhizomatic network, from which shared context can become community. Neuronormativity seeks to reset those liminal spaces, and enforce a generalised context. Neuronormativity is the death of our reality.

Neuronormativity is the death of community.

David Gray-Hammond 0 Comments
Sep 1 2023
What is the double empathy problem and how does it relate to autism?

Within the Autistic community, there is theory that we speak about as though it is commonplace in human lives. In part, this is the double empathy problem in practice. However, not all theory that we speak of is known by wider society. Thus, it is my intention to demystify a small part of that theoretical knowledge in this article.

What is the double empathy problem?

The double empathy problem is a theoretical basis to explain why people with vastly different experiences of the world find it difficult to empathise with each other. It states that individuals and groups with differing cultural and life experiences struggle to understand the experience of the other due to having no point of reference within that opposing worldview.

How does the double empathy problem relate to autism?

Autism is broadly viewed by the wider world as a diagnostic category. It has been framed as a disorder affecting social communication that is pervasive and lifelong in nature. Autistic people, however, see autism differently. Autistic people view autism as an abstract concept with the only tangible aspect of it being the existence of Autistic people. That is to say, autism does not exist, only Autistic people exist.

Within this worldview, being Autistic has been conceptualised as an identity bound within the remit of the neurodiversity paradigm. As opposed to being a disorder, being Autistic is a natural variation of the human mind that prevents Autistic people from performing neurotypically, i.e. we can not assimilate yo neuronormative standards.

Consequently, perceived deficits in social reciprocity and communication are, in fact, the double empathy problem in practice. Because we are a minority group, our ability to communicate and empathise with others is viewed as deficient as opposed to just “different”.

Why is the double empathy problem important to Autistic people?

The double empathy problem allows us to demonstrate the fundamental power imbalance between Autistic and neurotypical individuals and groups. Autistic people’s position as a minority group results in our existence being pathologised and medicalised, while neurotypical embodiment is seen as something to be desired.

The double empathy problem highlights the exclusionary and oppressive nature of neuronormative thinking while highlighting the issues with cross-cultural and cross-neurotype communication and social reciprocity. Thus, rather than view Autistic people as anti-social, and deficient in communication and empathy, it would be more accurate to say that we have differences in these areas.

Why are Autistic people different?

Due to differences in brain functioning, Autistic people experience and process information differently. As a result, Autistic people utilise and understand language differently, resulting in the evolution of an Autistic culture and sociality (AuSociality). These fundamental differences in our use and understanding of language, sociality, and processing of information constitute a cultural divide that prevents neurotypical society from truly empathising with our experience.

Further Reading

Milton’s ‘double Empathy Problem’: A Summary for Non-academics

Dr. Damian Milton- The Double Empathy Problem Ten Years On

David Gray-Hammond 0 Comments
Aug 28 2023
Creating Autistic Suffering: The Self-Diagnosis Debate

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

There are many other nuances to Autistic self-diagnosis debate considering colonialism, racism, misogyny, and transphobia (to name a few) that others with more lived experience would be better placed to highlight. This article is not the whole issue (links at the end). We seek to address some of the most obvious points within the confines of a blog post.

There is a long-standing debate around the validity of people who self-identify as Autistic without formal diagnosis. One of the main arguments we see against self-identification is “what if they get it wrong?”. We would respond with “how can it be wrong?”. Autism is an abstract concept, the diagnostic criteria is fundamentally flawed, based only on white western boys who are displaying trauma responses. Autism does not exist as a tangible entity. You can’t touch it, manipulate it, you can’t interact with it. What actually exists is Autistic people.

So, what if it is wrong?

Notwithstanding the above point that self-identification cannot actually be wrong, lets just pretend that it can be for the sake of this next section. What if somebody identifying as Autistic is in fact experiencing a different flavour of neurodivergence? The rate of co-occurrence between Autistic people and other neurodivergences, conceptualised as “mental health conditions” is ridiculously high (more on that here). Tanya and David often joke that we have never met a ‘ready-salted’ Autistic; that is to say, we have never met an Autistic person that comes in only one flavour, without co-occurring conditions. This means that statistically, Autistic people are more likely to be recognised with co-occurring mental health differences than the neurotypical population.

“It’s trendy to be Autistic”

People who make the argument that self-diagnosed individuals are following a trend fundamentally misunderstand the neurodiversity movement. The neurodiversity movement is born from the collective frustration and mistreatment of neurodivergent people. No one is identifying as Autistic for fun. We come to this understanding because we are desperate to find relief from a world that has systematically oppressed and harassed us. Another misunderstanding here is around what being neurotypical is. We have a false dichotomy of ND vs NT, but neurotypicality is a performance, not a neurocognitive style (Walker, 2021). It is an ability to fit in with the world neuronormative standards. To consider it another way, if you identify with the Autistic label, you almost definitely can’t perform neurotypicality at the very least.

What is the neurodiversity movement and how does it relate to self-identification?

The neurodiversity movement is, at it’s core, a social justice movement. Those who identify as neurodivergent are situating themselves within the social model of disability. It is a political stance, one that places the person in opposition to the medicalisation of human minds. It is a movement that exposes the flaws of our current capitalist and neoliberal culture in the west that seeks to pathologise anything that does not conform to an attitude of profit-driven, self-reliant, neurotypicality. When we tell people not to self-diagnose, or identify outside of diagnostic models, we are inadvertently bolstering the psychiatric industrial complex that serves to medicalise dissent from our current systems of oppression. Therefore, by opposing self-identification, we are policing peoples political expression, which is a product of privilege and frankly makes you a bit of an arsehole.

The validity of the autism diagnostic criteria

Problems with the diagnostic criteria are well documented, we don’t have space to list every single issue, but there is more to be found here. What should we do about identification? Does this mean that nobody should ever be identified as Autistic? Absolutely not. There is research specifically on the flaws within the diagnostic criteria, so what do we have as an alternative? This is where Autistic-led theory comes into it’s own.

Specifically, the double empathy problem (Milton, 2012). Research tells us that Autistic to Autistic communication is more reciprocal and of better quality than Autistic to non-Autistic communication (Crompton et al, 2020). Research also tells us that neurotypical people perceive Autistic people unfavourably (Mitchell, Sheppard, & Cassidy, 2021). Botha (2021) evidences Autistic community-connectedness as a buffer against minority stress. To bring these points together, if you communicate more effectively with other Autistic people, if you find that neurotypical people dislike you for no reason, and if you find being part of an Autistic community massively reduces the minority stress that you experience; the research suggests that these things are far more effective at identifying Autistic people than flawed diagnostic criteria from old white men who studied little white boys.

To conclude

So, next time someone tries to tell you they are Autistic, try believing them. We don’t need old, stale, and pale neurotypicals to validate our internal experience of the world, and give us permission to exist. We are more than capable of knowing ourselves. If it helps us live more authentically, and reduces the stress we experience, then we should not be policing that. To speak against self-diagnosis is to parade one’s own ignorance for all to see.

If you think you’re Autistic, welcome to the community, we hope you find your home here.

Further reading

Racism- https://journals.sagepub.com/doi/10.1177/13623613211043643

Gender-https://www.forbes.com/sites/anuradhavaranasi/2022/08/31/autism-diagnosis-has-a-gender-bias-problem/

Transphobia- https://www.theautismcoach.co.uk/blog/transphobia-and-autism

References

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

Crompton, C. J., Sharp, M., Axbey, H., Fletcher-Watson, S., Flynn, E. G., & Ropar, D. (2020). Neurotype-matching, but not being autistic, influences self and observer ratings of interpersonal rapport. Frontiers in Psychology, 11, 2961.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.

Mitchell, P., Sheppard, E., & Cassidy, S. (2021). Autism and the double empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39(1), 1-18.

Walker, N. (2021). Neuroqueer Heresies: Notes on on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

David Gray-Hammond 0 Comments
Aug 16 2023
AuSocial: Towards an understanding of Autistic social culture

In my book The New Normal: Autistic musings on the threat of a broken society I have a chapter about Autistic social nature. Autistic people have widely been represented as being asocial, which is patently absurd. Autistic people have a rich and diverse social culture that has been ignored for a long time.

“One of the prevailing misconceptions is that as Autistic people we are overtly asocial beings. It is taken as common knowledge that we are the friendless weirdos who don’t understand social cues but can recite every train we’ve ever seen.”

Quote from The New Normal

A brief look at the research

Upon perusing the existing literature surrounding Autistic sociality, there is limited research into the social nature of our community. I might first start by situating us within the remit of The Double Empathy problem.

“It is also vital to remember how the double empathy problem as initially conceived was heavily influenced by sociological theory and that such social interactions happen within a continually negotiated and mutually constructed context”

Milton et al (2022)

The double empathy problem within the context of Autistic communication essentially positions us as having a different way of communicating and relating to language rather than a deficit. This difference arises from cultural differences and the relationships we have with the world power structures.

Due to structural oppression, our style of communication is often centred as an issue to be fixed.

“The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the ‘social brain’, or as possessing ‘zero degrees of cognitive empathy’. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people.”

Milton (2014)

So we now have a position whereby Autistic people do not lack sociality but instead experience a different form of sociality. This is what I refer to as AuSocialility or being AuSocial.

Despite indications to the contrary, the emphasis is often directed towards teaching Autistic people to learn non-Autistic social culture, despite this being uncomfortable or even harmful for us. Some research has argued that this should be the other way round.

“We recommend teaching not autistic people but rather non-autistic individuals about autistic sociality, in order to lower the burden on autistic interlocutors in cross-neurotype interactions and socialization”

Keates, Waldock & Dewar (2022)

What does being AuSocial mean?

Autistic sociality or the AuSocial presence of Autistic people can be conceptualised by the growing cultural practices of Autistic people. We have our own customs, use of language, moral values, and even recognise what would be the cultural equivalent of public holidays in the existence of things such as Autistic pride day and the reclamation of Autistic acceptance month.

Such cultural practices as body-doubling (a firm favourite for AuDHD people) where we use video platforms such as zoom to be present and parallel with others while working on separate tasks are a key feature of Autistic professional culture and sociality. One might also look towards our differences in the way we understand and process language as the formation of a dialect.

A key feature of AuSociality is the cultural practice of moral defence of minority groups. While the Autistic community is far from devoid of bigotry, there is a general atmosphere of protectiveness towards the multiply marginalised that isn’t experienced within the non-Autistic cultural space.

In summary, AuSocial culture is a complex and highly developed set of communication, language, and socialisation skills that can only be witnessed between Autistic people. Rather than being deficient in our social exchanges, we often achieve a great deal and naturally fight to try and improve the world for our neurokin.

Conclusion

Autistic people, like most humans, are inherently social beings. Despite testimony to the contrary (usually by non-Autistic professionals and researchers) we have developed our own AuSocial culture that stands diametrically opposed to those who would label us as asocial. Such cultural practices as those within the Autistic community serve to diminish the burden of existing with in a systemically violent society and serve an important protective function for our wellbeing.

I invite people to add their own examples of AuSocial culture .

David Gray-Hammond 0 Comments
Jul 26 2023
Why is the Autistic community so important for Autistic people?

Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.

In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?

Community and wellbeing

Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.

Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.

Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.

Minority Stress

Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.

What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.

The Autistic Community

The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.

I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.

This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.

Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.

Our lives depend on it.

David Gray-Hammond 1 Comments
Jul 12 2023
What is an Autistic advocate?

In the Autistic community, a common term we hear is “Autistic advocate”. The popular definition is a person using their lived experience to further the cause of Autistic rights and the wider neurodiversity movement. Despite this however, advocacy is a complicated and important role.

As an independent advocate, I utilise various different models of advocacy depending on what I am doing. The most common model, and the one that you will often see online through social media is community advocacy. Community advocacy requires us to work to represent the views and wishes of a wider community of people. A good example of this kind of advocacy is the Spectrum 10k campaign.

Members of the Boycott Spectrum 10k campaign engaged in community advocacy when writing the joint statement that was sent to the Health Research Authority. Community advocacy can often blend in with activism based approaches to enable wider change for an entire community of people.

There is also peer advocacy. This is the model of advocacy I use most commonly. This usually involves working with individuals as a member of their own peer group to represent their wishes, needs, and fight for the accommodations they require. This is an important type of advocacy for Autistic people who so often have to work with professionals who do not have lived experience that allows them to empathise fully with their clients.

Perhaps the most complicated but vital form of advocacy used in the UK is statutory advocacy. Two particularly relevant types of statutory advocates are Independent Mental Health Advocates (IMHA) and Independent Mental Capacity Advocates (IMCA). IMHAs work to ensure a person’s rights are fulfilled under the Mental Health Act (1983), while an IMCA fulfils the same role with regards to the Mental Capacity Act (2005).

These roles are important because they ensure that a person is not needlessly detained or deprived of their liberty.

There are many misconceptions about advocacy, but the biggest one is that as advocates, we speak on behalf of people. Advocacy built upon being another person’s voice is fundamentally flawed. As advocates, we should be empowering a person to communicate their views and wishes themselves, in whatever form of communication works best for them.

Another role for an advocate (particularly within the Autistic community) is to help contextualise a person’s experiences. When a person is having negative experiences, we can use our experience as an advocate to help them understand why that has happened and what they can do about it. In the Autistic community, much of our community advocacy is based on helping people understand their Autistic experiences in order to help them better advocate for themselves.

The ultimate goal of advocacy is to become redundant. Effective advocacy should empower its recipients to be able to advocate for themselves. So, while it may sound strange, our ultimate goal should be to not be needed.

Whatever form your advocacy takes, it is important to engage in reflective practice, and remember it is not your job to save people. An advocates role is to empower people to fight their own battles. Nothing will burn an advocate out quicker than joining the dysregulation of the people they are trying to help. We need to be the calm in what is often a tense situation.

Advocacy is an intense experience, but it is so very worth it. I look forward to seeing how the Autistic community’s advocacy circles evolve in the future and look to continue to evolve my own advocacy as ideas within the community shift and change.

David Gray-Hammond 0 Comments
Jun 21 2023
Being Autistic doesn’t automatically make you a good person

When I was new to the Autistic community, I was somewhat naive. Compared to the circles I had existed within during active addiction, everyone seemed very supportive and generally decent. Unfortunately, I had a rude awakening. Not all Autistic people have good intentions. We are human, and thus subject to making the mistakes and bad choices that most other humans do also.

One of the primary ways that Autistic people are infantilised is in the assertion of our perpetual innocence. The truth, however, is far from that. We are a community that has been traumatised time and again; subsequently reacting to things through our trauma. Beyond that, we have a fair share of bigots. BIPOC, Queer, and gender diverse communities within Autistic circles know this only too well.

Despite a huge part of our community being multiply marginalised, we are a community where those with privilege still speak over others. Even as a write this, I am aware of my cis-, white privilege. Despite the intersections I exist within, I have a great deal of privilege because of the colour of my skin and gender identity.

It was a great disappointment to me to discover the bigotry within our own community. Having come from a life where I was surrounded by bad people, and in fact could probably have been one of the bad people, I had hoped so desperately that there was a place in this world that was untouched by hate. Sadly, hatred is insidious and seeps into the cracks that are available.

It did teach me the important lesson, though, that Autistic people are not inherently good or bad. It helped to humanise not just other Autistic people, but also me. It showed me the pervasive attitudes towards Autistic people that we are trapped in childhood, incapable of having agency over our lives. So, while I cannot stand the bigotry, there is value in the lesson I have learned.

In order to fight back against hatred within our own community, we first have to acknowledge that it is there. We have to acknowledge that Autistic people are capable of hateful behaviour. We are human beings, and we will not fix our problems without acknowledging they are there.

David Gray-Hammond 3 Comments
Jun 18 2023
Today is Autistic Pride Day: Let’s celebrate our diversity

I have been active in the Autistic community for some years now. I have come to realise that autism as a diagnosis has been somewhat of a failed experiment. Diagnostic models have failed to capture the intricacies of what they dub “autism spectrum disorder”. A lot of the issues with the diagnostic process itself come back to racial and socioeconomic bias in research literature; there are also significant issues with people gendering autism, creating exclusion by denial of gender and sexually diverse experiences.

The Autistic community is diverse. While autism itself is an abstract concept, the very real Autistic people that exist come from all parts of the tapestry of life. One might hope that the days of autism being a diagnosis of middle-class white males is coming to an end, but there is still significant disparity. This article highlights the significant gulf in diagnostic rates in the US alone. It is clear that BIPOC people are being ignored despite the countless voices from their communities speaking up.

I also recently wrote about queerness and being Autistic. Gender diversity and sexualities that do not fit into perceived heteronormativity account for a great deal of the Autistic community. Again, these groups may have a harder time getting a diagnosis due to ideas that position autism as something that is only observed between cis-gendered males. It is clear that if you don’t fit the historical research, diagnosticians will deny you exist.

But you do exist, like all of us. You have the same strengths and struggles, plus other struggles that I can not know as a person with the privileges I have.

When we speak of Autistic pride, I think many view it as cute little get togethers, spending time amongst our own people. That’s not entirely wrong, but Autistic pride, much like any pride, is so much more than celebrating. We are protesting. We are refusing to be ashamed, and what we need to stand against moving forward is the bigoted gatekeeping of the few who believe that multiply marginalised communities should be targeted and minimised.

Autistic pride requires us to root out the bigotry in not just wider society but also our own community. If there is even one person who can not celebrate their Autistic pride, then none of us can. Autistic people are a diverse people, and our fight will not succeed if we are not also fighting for our neurokin who exist at the intersections.

So today, and for all days to come. If someone asks you what Autistic pride is; tell them it is our fight to make sure the world has a place for all Autistic people, not just the select few who fit into the world normative standards. Let’s build a world together where intersectional communities can feel safe to express their experiences without fear of backlash or risk to wellbeing and life.

There is no Autistic liberation while any one of us is being oppressed.

David Gray-Hammond 7 Comments
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