Autistic Community - Emergent Divergence

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

Jun 14 2023

The link between autism and Queerness

The other day I live recorded a podcast episode about neurodivergence and queerness. In it, we discussed the fact that Autistic and otherwise neurodivergent people are more likely to be Queer/2SLGBTQIA+. The discussion was very good, and we really got into some of our experiences.

It’s no secret that Queerness is a significant intersection with Autistic experience. Aside from anecdotes from within the community, studies such as Janssen et al (2016) and Strang et al (2020) indicate that not only are we more likely to be gender-diverse, but that Queer communities are more likely to contain Autistic people. Strang on particular speaks of the lack of research looking into experiences over the lifespan and the need for such longitudinal study to be carried out.

With so much Queerness in the Autistic community, one might wonder why this intersection is so significant. I think the answer is quite simple. Albeit somewhat theory heavy.

Neuronormativity.

Neuronormativity is pervasive, and if you think that it only effects neurodivergent people you are wrong. Both BIPOC and 2SLGBTQIA+ communities have fallen foul of the belief that there is a standard of neurology we should all achieve. It was not so long ago that being gay or transgender was listed in the DSM as a psychiatric disorder.

Autistic people naturally queer neuronormative standards. In this sense, queer is a verb. It is the subversion of societal expectation. Through our rejection of neuronormativity, we create space to explore our gender and sexuality (or lack thereof) unencumbered by the chains of bigoted standards of being.

When we begin to dismantle neuronormativity, we also begin to dismantle heteronormativity. Our experience of ourselves and attraction (or lack of attraction) to others is built upon the experiences we have of our environment. Experiences that we have through the lens of being Autistic. You can not separate autism from our queerness any more than you can separate a person from their brain. They are part of us, and without them, we would be someone different.

Thus, to neuroqueer in society is to become more than just neurologically queer, but also queer with respect to gender and sexuality.

With this said, there is still bigotry in the Autistic community. There are those who weaponise our intersectionality against us, and wield it as a tool to invalidate and oppress us; and yes, there are oppressive attitudes within our own community.

We must continue to build a community that is loving and accepting of all of the diversity within Autistic experience and recognise that Autistic people all experience the world in their own unique way.

David Gray-Hammond 16 Comments

Jun 2 2023

The relationship between queerness and being Autistic

“Queer is a term used by those wanting to reject specific labels of romantic orientation, sexual orientation and/or gender identity. It can also be a way of rejecting the perceived norms of the LGBT community (racism, sizeism, ableism etc). Although some LGBT people view the word as a slur, it was reclaimed in the late 80s by the queer community who have embraced it.”
stonewall.org.uk

I am queer, and I am also Autistic. In fact, it would be more accurate to say that I’m queer and multiply neurodivergent; I am not just Autistic, but also ADHD and Schizophrenic. Some might wrongly assume I should keep my queerness out of discussions of neurodivergence, but the two are inextricably linked.

As an Autistic person, I find myself constantly questioning the status quo. Even before the discovery of my neurodivergence, the concept of normality felt painful and alien to me. I used to believe that normality (perhaps more accurately, normativity) consisted of arbitrary rules, but I realise now they are not arbitrary at all.

Normativity is designed to oppress those who do not comfortably fit into it. For Autistic and otherwise neurodivergent people, we struggle to fit into the system because of our neurology. For queer people, we do not fit into the capitalist fairy tale of binary gender and monogamy within the confines of heterosexuality. This is neuronormativty and heteronormativity respectively.

The relationship between the two lies in my abject rejection of normativity. I have neuroqueered myself into a fluid and radical identity that stands opposed to what colonial society wants me to be. This is more than just “acting Autistic”. I embrace queerness in all aspects of my life, sexuality included.

Queerness in this respect is not solely about who you are or who you sleep with. For me, my queerness is an act of defiance, a refusal to be contained. Being queer leaves me the space to be whomever I wish, to explore avenues that society would rather cordon off from me.

If I were not Autistic, perhaps if my particular mix of neurodivergence were different, I would not have this drive to liberate myself from the cult of normality. We were sold the lie of essentialist identities, and my bodymind is painfully aware of its dishonesty. I am queer because the world does not want me to be queer.

To be contained into fixed and sanctioned identities is to entangle the Self in the chains of normativity. Queerness, then, is the angle grinder cutting through those chains. I am openly queer so that it may be safer for others to be queer. My pride is not egotistical, but a refusal to be ashamed of any part of my being.

I reject normativity in all kinds, including the identity politics of my perceived peer groups. None of this would happen if I were not Autistic.