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Oct 10 2023
Autism and Paranoia: Autistic pattern recognition when it runs away

Autism is not something that is generally associated with paranoia, but as you will see from previous writing on the topic, it is an issue that needs to be given consideration. Research as far back as 2011 (King & Lord, 2011) has indicated that there is a growing belief that autism and schizophrenia may be part of a single spectrum. As an Autistic and Schizophrenic person, I am inclined to believe they might be, the relationship between the two feels complex and nuanced, so it should come as no surprise that paranoia is a topic that needs attention.

Is there a difference between Autistic paranoia and Schizophrenia paranoia?

Research has indicated that paranoia in Autistic people occurs at a similar rate to Schizophrenic people, but Autistic people experience it more on the basis of social cynicism (Pinkham et al, 2012). Social cynicism is a broad category, but to my mind it has to do with our pattern recognition skills. Autistic people grow up in a world that is inherently traumatic, and learn to predict outcomes in order to defend the small amount of wellbeing afforded to them.

This elevated sensitivity in pattern spotting can at times get out of hand. When we are in meerkat mode or atypical burnout, we may start seeing data points that would usually be considered anomalous background noise as something meaningful and connected to real world occurrences. This associative thinking can create feelings of paranoia and persecution, which in turn adds to our dysregulation, making it more likely that we will form these abstract connections. When we combine this with a cynical attitude towards our society, it is easy to see where the problem begins.

How does this differ to people who are Autistic and Schizophrenic?

In my own experience, my paranoia is considerably more bizarre than the average burnt out Autistic person. I experience delusions that are often abjectly impossible as opposed to many Autistic people who experience paranoia that has a more tangible and realistic pattern to it. Mazza et al (2022) found that Schizophrenic people struggled to understand social scenarios, as opposed to Autistic people who were more likely to misunderstand people’s intentions in social situations. We can consider that the additive effect of this is an increased susceptibility to gaslighting, which as a traumatic occurrence in itself may well feed into our paranoia. When you are Autistic and Schizophrenic, the people around you have a great deal of influence on your wellbeing. Paranoia can be intimately connected to the views of the people in your life.

Autism, paranoia, and co-regulation

Autistic people experiencing paranoia often (anecdotally) report decreased interoceptive sensitivity and struggle to regulate their own emotions. This is where co-regulation with a safe person is absolutely vital to recovery. When we are unable to create feelings of safety on our own, it becomes necessary for another person to share their calm and rationality with us. This can be particularly problematic for households where dysregulation is the norm, heightened emotions of those around us can elevate feelings of paranoia and create self-fulfilling prophecies.

Social factors in Autistic paranoia

Minority stress plays a significant role in the psychological wellbeing of Autistic people (Botha & Frost, 2020). When considering minority stress, we have to consider the cumulative stressors that come together to create minority stress. Howlin (2013) discusses how Autistic people have less positive educational outcomes, as well as being poorly served by health and social care settings. We also have to consider the class divide, intersection with race, gender, and sexuality, and social isolation. We are a population who face very negative socioeconomic outcomes. This can create strong feelings of distrust in the system and a sense of persecution by a society that dictates our assimilation regardless of whether it is the right thing for us.

This is just a brief look into the world of autism and paranoia, but I believe it highlights some key issues that deserve further research and support. In the meantime, the best thing we can do for our Autistic loved ones is to create a safe and accepting space, free from the demands and alarming patterns of our abusive society. For the issue to be solved, society needs to be changed at it’s foundations.

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.

You can now purchase access to pre-recorded presentations on this website! Check it our here.

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
Jul 28 2023
Autistic Parenting: Supporting our Autistic children’s mental health when services won’t

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

There is an ongoing crisis in services such as Child and Adolescent Mental Health Services (CAMHS) when it comes to Autistic young people’s mental health. Failing to support our Autistic young people can have a big impact on our wellbeing as parents as we watch our children go through the same systemic discrimination that we have often experienced ourselves.

Support for the child means support for the whole family

Seeing the invalidation and gaslighting that can take place when approaching CAMHS can lead to trauma responses in ourselves. Importantly, appropriate mental health support will provide support to the whole family. Family members of traumatised Autistic young people can experience their own trauma by witnessing what has been conceptualised as “challenging behaviours” (Munday, 2023; Gray-Hammond, 2023). Witnessing self-injurious behaviours can be a particularly upsetting experience, especially when these behaviours are used against families when they reach out for support. The medical model centres “problems” within the child rather than in the systems which fail to support them.

Failures by CAMHS to support Autistic young people can create an environment that has the potential to traumatise the entire family unit; not just the young person. Stewart et al (2017) indicated that PTSD may be more prevalent amongst parents of Autistic young people, who are less likely to approach services for support with their own mental health. Unfortunately, such research ignores the possibility of parents being Autistic and having their own previous trauma (Gray-Hammond & Adkin, 2021). Again, the blame unfairly sits with the Autistic young person who must take responsibility not only for their own mental health but that of their family members.

Institutionalised Parent/Carer Blame

Institutionalised parent/carer blame is a significant issue for Autistic parents (Clements & Aiello, 2021) with some going as far as experiencing accusations of Fabricated or Induced Illness (Gray-Hammond & Adkin, 2022). CAMHS have been known to refer families to safeguarding instead of providing support with mental health. Another approach is to send parents on parenting courses such as the Cygnet Parenting Program from Barnardos. In these cases, it is clear that a child’s mental health concerns are being blamed upon parenting styles as opposed to environmental issues. Saying nothing of the deficit based ideologies which underpin these programmes.

Parent/carer blame can be a significant source of trauma that may deter families from approaching services again in the future. CAMHS and other services are creating a hostile environment that excludes Autistic young people in more ways than simply refusing to see them. There is also an inherent misogyny in parent/carer blame with mothers taking the most accusations since the days of Bettelheim. There is also a great deal of invalidation from service providers for Autistic parents who are seen to be projecting their own issues onto their children.

Minority-stress is amplified by CAMHS failure to support Autistic young people

Minority-stress can be understood as the collective pressure of multiple areas of discrimination and ostracisation. This can include things such as discrimination in the healthcare setting (Botha, 2020). Stigma is also a major contributor to minority-stress (Botha & Frost, 2018), of which there is a plentiful supply within services such as CAMHS. This stigma affects not only the young person, but also their parents.

“Minority stressors such as victimization and discrimination, everyday discrimination, expectation of rejection, outness, internalized stigma, and physical concealment of autism consistently predicted diminished well-being and heightened psychological distress”

Botha & Frost, 2018

It has also been suggested that everyday discrimination goes hand-in-hand with an expectation of rejection (Botha & Frost, 2018) which can itself make accessing services like CAMHS incredibly triggering for Autistic parents.

In conclusion

Parenting an Autistic child who is experiencing distress due to their mental health is a traumatic experience. To be clear, this is not because of the child themselves, but because services like CAMHS are inherently hostile towards Autistic people and our families. Reaching out for support can cause more trauma, effectively isolating already marginalised families. The very services which are meant to support us often do us more harm. It is clear that CAMHS has a long way to go in order to support Autistic children and young people, and their families.

Click here to sign the CAMHS petition.

Check out this seminar (free to Autistic parents) on burnout by David and Tanya.

Find more information about CAMHS here.

References

Barnardos Parenting: Cygnet Parenting Program. https://barnardos-parenting.org.uk/

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

Botha, M., & Frost, D. (2018). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 10 (1).

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Gray-Hammond, D (2023) Challenging Behaviour: The weaponisation of Autistic experience. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. https://emergentdivergence.com

Munday, K. (2023) The truth about “challenging behaviour”. https://autisticltd.co.uk

Stewart, M., McGillivray, J.A., Forbes, D., & Austin, D.W. (2017). Parenting a child with autism spectrum disorder: a review of parent mental health and its relationships to trauma-based conceptualisation. Advances in Mental Health, 15 (1), 4-14.

David Gray-Hammond 1 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
Jun 28 2022
More on Zeno’s Paradoxes and the issues with Autistic to non-Autistic communication

As you may have noticed from my most recent blog post, I am somewhat down a rabbit hole at the moment. In my previous article I discussed Zeno’s paradox of plurality and how it applies to the dehumanisation of Autistic people and the double empathy problem.

Today I would like to consider another of Zeno’s paradoxes and how it applies to the double empathy problem.

This particular paradox was known as the Dichotomy Paradox. Essentially, it explains that when travelling from point A to point B, one must first travel to the halfway point between the two. To then travel from that point to the destination, you must travel half way again. This continues infinitely when travelling towards a fixed destination and thus Zeno argued that you can never reach point B.

When considering communication across different neurocognitive styles, one must also consider what the goal is. If we presume that the goal is “successful communication” then the double empathy problem tells us that this is very difficult due to the different styles of communication. Despite this, Autistic people are always expected to be the ones to put the emotional labour into communicating. This has been discussed by Rachel Cullen, a recording of a livestream with Aucademy featuring them can be found here and here).

We then encounter the dichotomy paradox. Neurotypicals remain a fixed point in the goal of successful communication, while we as Autistics are constantly expected to move towards the goal by accommodating their preferred communication styles. It is as if we are constantly reaching the halfway point, and never reaching our destination. No matter how well we accommodate neurotypical preferences, we are caught in an infinite regression of distance, not achieving the aim.

This to me, highlights the deeper issue of dehumanisation and objectification of Autistics. Neurotypicals (perhaps subconsciously, sometimes consciously) consider themselves the pinnacle of humanity, a goal that all should be striving for. We know from the existence of the various compliance based behavioural interventions, that Neurotypicals do believe this in many cases. Evidenced by the fact that it is considered “gold-standard” to teach Autistic people to hide their Autistic nature.

As Dr. Monique Botha mentioned in their recent seminar, there is a reason why researchers and professionals insist on person-first language. “I want to eradicate autism” sounds much less like genocide than “I want to eradicate Autistic people”. However, both of those statements mean the same thing. This is justified because whether or not they overtly see it, neurologically queer behaviour and experience is seen as non-human. Remi Yergeau argued this dehumanisation was due (at least in part) to a perceived lack of rhetoricity in their book Authoring Autism.

Autistic people are viewed as husks, mindlessly performing nothing, controlled by an abstract spectre called autism. This then is perhaps why so many neurotypical people insist on person-first language, and ignore our preference of identity -first language. Why would they take a step towards the all consuming spectre? Surely it is better to leave such a thing trapped in that infinite journey towards a goal that is never to be reached.

This, then, is the appeal of neuroqueering to me. When I embrace my neuroqueer self, I no longer have to be trapped in the infinite journey towards performative neurotypicality. I escape the dichotomy paradox by abandoning societal expectations, and being true to myself. True to what nature intended for me. I am Autistic, I am divergent, and that divergence is a thing of beauty.

We need to raise up our fellow Autistics, high above the dichotomy of neurotypicality and neurodivergence. We need to embrace a world in which these words are redundant in meaning because no one group has the power to oppress another; and when our fellow Autistics are lost in the dark, we need to shine our own light, and guide them back to the daylight.

David Gray-Hammond 0 Comments
May 17 2022
Creating Autistic Suffering: Clustered injustice compounds minority stress in Autistic experiences

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

Trigger Warning: Injustice, mental health, systemic oppression, minority stress, fabricated and induced illness, stigma.

“The state creates the rules and dictates the processes to be followed: processes that fragment, silo, and compartmentalise, and in doing so, generate the complexity that is the root cause of clustered injustice.”

Clements, L. (2020)

As disabled people not only do we have to consider how our disability affects us inday to day life, but we also have to consider the amount of ‘life admin’ that we encounter daily. Policies, procedures, and legal processes are in place to supposedly serve us, but what they actually serve to do is make an awful lot of these aids and services inaccessible.

We have the Equality Act (2010) that serves the purpose of making it unlawful to discriminate against anybody that has a “protected characteristic”, including disability. At a glance this sounds amazing, and very forward thinking, but does anyone actually know what is involved in bringing a disability discrimination claim against an institution or person?

It’s a resource heavy, and convoluted process. It may even involve solicitors.

Do disabled people have the spoons, resources, or money to access the laws that are put in place to protect us? How can we expect the average disabled person to navigate these systems, and bear the financial and psychological burden.

If you have a disabled child, you have the Education, Health and Care Plan (EHCP) process. Which in its basic form is supposed to involve a holistic assessment of a child to identify their needs and silo them into four broad areas of special educational needs.

Sounds simple, right?

For any parent who has been through this deeply traumatic process (because that’s what it is), it does not do ‘what it says on the tin’. It is again a resource heavy and convoluted legal process that may even put you on the radar of social care, and a victim of institutionlised parent carer blame (IPCB) (Clements. L, and Aiello, L. 2021).

These are just two examples of the many processes that barricade Autistic people and their families out of equitable and fair treatment. They never come one at a time…

So, what is clustered injustice, and why do we need to know about it?

Cluster definition

“a group of similar things that are close together, sometimes surrounding something.”

Cambridge Dictionary

Injustice definition

“the condition of being unfair and lacking justice, or an action that is unfair.”

Cambridge Dictionary

Given these definitions, clustered injustice, put simply, refers to legal problems that are encountered by disadvantaged people, whereby the issues are often not singular but ‘clustered’.

While it refers to legal proceedings, it can also be experienced by Autistic people when navigating law, policy, process, and procedure, etc.

Hypothetical case study

Fabricated and Induced Illness (FII) guidance can lead to clustered injustice (Gray-Hammond, D and Adkin, A. 2022). For example, a mother may be seen to be making “frequent and vexatious complaints” (Royal College of Paedatrics and Child Health, 2021) while trying to have their child formally recognised as Autistic, and subsequently access appropriate support. In this case, the mother has greater knowledge of their child than the professionals, but is subjected to IPCB by being accused of FII.

The diagnostic process for a child is a multi-disciplinary approach that spans education, health and social care. Depending on the age of the child, mental health services may also be involved. It’s done this way so that professionals are able to gain a holistic view of the child, and accurately assess them. However, we know that services are woefully underfunded and basic knowledge about Autistic experience is sparse, stereotypical, and loaded with pathologising rhetoric (Dillenburger et al, 2016).

Lets say the professionals get it wrong, lets say the child has an ‘atypical’ presentation (which basically means the assessing professionals do not have sufficient knowledge of Autistic experience in order to be assessing the child). Consider that you have to point this out in the form of a complaint. You are potentially complaining to, health, social care, and education, maybe even different departments in each of those areas. This means that in order for a parent to have their complaint holistically considered they have to complain to separate departments, following separate processes which could easily be considered vexatious and frequent, when in fact there is no other holistic solution available to them.

This is clustered injustice.

Autistic people have similar experiences with accessing disability benefits, healthcare, the justice system, and many more areas of life. Institutions and policy are designed in such a way that the holistic nature of the barriers we face are fragmented, siloed, compartmentalised, and ultimately minimised. At worst it is then used as a tool to further exacerbate an already existing power imbalance. Clustered injustice is a weapon, used by those in power against disadvantaged groups.

What is minority stress and how does it relate to clustered injustice?

Minority stress refers to the unique stressors that are experienced by minority groups as a result of their segregation from society at large by stigmatisation and discrimination.

“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events. Social structure facilitates this process through acts of discrimination and social exclusion, which are added stress burdens that socially advantaged groups are not equally exposed to.”

Botha, M., & Frost, D. M. (2020)

It is simple then to see that there is a direct and causative relationship between clustered injustice and minority stress.

What can be done to mitigate this?

Unfortunately, not a lot at this time. However, community connectedness does relieve the effects of minority stress in Autistic people (Botha, M. 2020). In short, the collaborative problem solving that can arise from finding your community and sharing the psychological burden with those that understand, and sharing resources and the experience of those that have come before you is invaluable.

As it turns out, we’re not anti-social loners after all!

If you see this or experience it, call it what it is. The more people that have a name for it, and actively speak out against it, the more awareness there will be of this particular form of injustice. This oppressive system relies on us not being able to articulate or describe the barriers that we face, the onus is put on us as Autistic people, to identify our needs and advocate for them. So now you have one more tool in your self-advocacy toolbox.

Knowledge is power.

Bibliography

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

Botha, M., and Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.

Clements, L. (2020). Clustered Injustice and the Level Green

Clements. L., & Aiello.,L (2021). Institutionalising parent carer blame. https://cerebra.org.uk/wp-content/uploads/2021/07/Final-Parent-Blame-Report-20-July-21-03.pdf

Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.

Equality Act (2010).

Gray-Hammond, D and Adkin, T (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. emergentdivergence.com

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/cluster

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/injustice

David Gray-Hammond 4 Comments
Aug 16 2021
Autistic people and suicide: A troubling tale.

It has been known for some time that Autistic people experience suicidal thoughts, ideation, and attempts at a much higher rate than the general population, but one recent piece of commentary paints a stark image of Autistic suffering.

South et al (2021) discuss the field of Autistic suicide prevalence. One of the most uncomfortable truths in their writing comes from Kõlves et al (2021). This study found the incidence rate of auicide attempts and deaths amongst Autistics to be over 3 times higher than the general population. This figure was higher still for Autistic women and Autistics with co-occuring psychiatric conditions.

Why is this?

In general, Autistics have to cope everyday with a system that by its very nature traumatises the Autistic mind. We are forced to mask who we are just to survive.

Just 22% of Autistics are in any kind of employment (Office for National Statistics, 2021), a disturbing figure when you consider that for many, having a job dictates your access to physical and mental health care.

This feeds neatly into the idea of minority stress. Dr Monique Botha-Kite has done some great work in this field and I recommend checking out the live session that Dr Botha-Kite did with Aucademy on the topic.

Botha and Frost (2018) found that as an identity-based minority, Autistic people experience increased social stress throughout their lives. This has a range of impacts that I won’t get into here, but I highly recommend checking out the study here.

We also can not ignore the intersections with the BIPOC and LGBTQIA+ communities, which represent a huge quantity of the community. Both of these communities experience their own minority stress, and we need to familiarise ourselves with how these different stressor interact with and potentiate each other.

The world is not designed for Autistics. It is a harsh environment that is actively killing our people. But what can be done about it?

We need to improve the diagnostic process and post-diagnostic support. Currently many Autistic people wait too long for a diagnosis that comes with exactly zero help.

We need to improve access to mental health and substance use treatment. Clinicians working within these services need to be not only aware of the neurodiversity movement, but actively engaging with and supporting it.

In fact, all professionals working with Autistic people need to be engaging with and supporting the neurodiversity movement.

Everyone needs to familiarise themselves with the unique intersection of BIPOC and Autistic experiences.

Autistic people need improved access to support for LGBTQIA+ issues such as gender dysphoria.

These are a few suggestions that I believe could help improve the suicide rate for Autistic people by improving their quality of life.

It is clear that the neurodiversity movement still has quite a distance to go, but I firmly believe that slowly but surely, we will get to where we are going.

David Gray-Hammond 0 Comments
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