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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 25 2023
CAMHS Mistreatment of Autistic young people: A case study

I have explored (extensively) the issues with Child and Adolescent Mental Health Services (CAMHS) in England. The particular focus of my writing has been their mistreatment of Autistic children and young people. Something I haven’t touched on is there well documented mishandling of processes around the assessment and diagnosis of autism itself. This has been a point of contention for some time now between Autistic people and professionals. The following case study highlights mistake that in my opinion are all too common. The trust in question is Sussex Partnership NHS Foundation Trust (SPFT).

The background of the Autistic young person

“Person E’s GP referred them to the Trust. The Trust refused to accept the referral, as Person E did not meet its criteria.

Six months later, Person E’s GP made a second referral. The Trust accepted this referral. Complainant G then reported that Person E was unable to leave the house and would not communicate. The Trust agreed to visit Person E at home. During two home visits, Person E was physically aggressive and would not speak to Trust staff. At a third home visit, Person E spoke to the Trust staff. “

Parliamentary & Health Ombudsman (2019)

This section highlighted two issues for me. The first is the refusal to accept the referral. One of the biggest factors in such refusals are the school. Many of us will be familiar with the saying “we don’t see that in school”. This is highly problematic because not only does it miss the nuances of masking, it sets the stage for future practices of Institutionalised Parent/Carer Blame (IPCB) that can become accusations of Fabricated or Induced Illness (FII).

Something else I noted in the report from the ombudsman was the mention of aggressive behaviour and refusal to speak to CAMHS staff. Aggressive behaviour can occur for any number of reasons, but is usually indicative of emotional dysregulation (which is common for Autistic children in mainstream educational settings) or interoceptive stimming, implying a significant degree of unmet sensory needs.

“Person E was then diagnosed with autistic spectrum disorder. Six months later, the Trust sought to discharge Person E from its service. Person E’s GP then made a further referral to the Trust, which the Trust considered but did not accept. Person E’s GP attempted a further referral to the Trust. The CAMHS service was transferred to another Trust at this time, which continues to care for Person E.”

Parliamentary & Health Ombudsman (2019)

This particular quote is at the bottom of the background section. It is again stating something that is not so uncommon. It highlights that following a diagnosis, the Autistic young person was discharged from CAMHS services. This is despite the fact that the child had demonstrated clear signs of emotiona dysregulation and distress. I call this the “diagnose and ditch” approach.

What was the complaint towards CAMHS?

Image Reads "Complainant G complained that the Child and Adolescent Mental Health Services (CAMHS) at the Trust did not accept the referral from Person E’s GP in a timely manner and then did not provide a diagnosis or treatment for three years. Complainant G also complained that the Trust discharged Person E too soon. Complainant G complained that the Trust refused to handle the complaint and referred it to another Trust. They also complained about delays in responding to the complaint. Complainant G said that, as a result, Person E’s condition worsened until it reached crisis point. Complainant G said Person E has missed out on three years of education. They told us of concerns they had for Person E’s future health and the support they need. Additionally, Complainant G told us of the emotional impact on both Person E and the family."

I would like at this point to highlight thee bottom paragraph of this screenshot. It highlights that due to inappropriate discharge from CAMHS after being diagnosed Autistic, this young person missed out on three years of education. Rightfully, the person making the complaint was concerned for the future of the young person.

“There are over 160,000 autistic pupils in schools across England.* Over 70% are in mainstream school, with the rest in specialist education, home educated or out of education altogether. With this report, we sought to understand their experiences and found a deeply troubling picture.”

National Autistic Society (Back to School Report 2021)

The above quote demonstrates that 30% of Autistic children and young people are in alternative provision or no provision at all. One should note that accessing a suitable alternative to mainstream education can take years, and so many of those young people will have missed out on a significant portion of their education. CAMHS play a significant role in the negative outcomes associated with this issue.

What did the Ombudsman say regarding CAMHS?

“As a result of these failings, the Trust missed the opportunity to help Person E and the family develop the appropriate steps to support her mental health. Person E suffered prolonged mental ill health. Person E and the family were left without the ability to manage Person E’s condition at the time.”

Health & Parliamentary Ombudsman (2019)

The Ombudsman stated that CAMHS had failed by not allowing a proper engagement. This was due to inappropriate approaches to the child that could have been handled differently. They highlighted the needs for dynamic approaches to communication and behaviour, and highlighted that when approaches didn’t work, new approaches should have been employed.

They noted that CAMHS taking 18 months to diagnose, only to discharge, was a failing on the part of professionals that contributed to a significant amount of stress caused by a lack of support for the family to help their child. They note the lack of a care plan that would have designated the support needed for the Autistic young person.

All of these things are, unfortunately, a daily occurrence in CAMHS.

What were CAMHS required to do?

“We recommended the Trust pay Person E £1,500 for the impact the lack of treatment had on them. We also recommended the Trust pay Complainant G and the family £500 for the distress they experienced.
The Trust complied with our recommendations.”

Parliamentary & Health Ombudsman (2019)

The above quoted section was the only actionable recommendation made. Beyond this, the trust were told to apologise, and learn from their failings. The “we will learn from this” approach has been used for time in memoriam to avoid making any meaningful change to services. CAMHS staff need a completely new and restructured service that requires input and training from Autistic and neurodivergent people. Current training is significantly sub par, and Autistic children are literally suffering because of it.

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David Gray-Hammond 0 Comments
Sep 18 2023
Creating Autistic Suffering: Interoceptive stimming or “challenging behaviour”?

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

TW: Discusses Challenging Behaviour, Disordered Eating, Sex and Related Activities, Self-Injury, and Victimisation

Recently David posted an infographic about interoceptive stimming. This proved to be a very popular topic and we felt it necessary to expand on this more via this series. In our experience working directly with Autistic individuals experiencing various levels of distress and crisis, what is often conceptualised as “behavioural” can be attributed to interoceptive self-stimulation.

What is interoception?

Interoception is the sense that tells us what is happening internally in our body. It allows us to identify our emotional and physical needs through the sensations we derive from them.

“So how exactly does interoception do its important job? This sense is hard at work all of the time, monitoring your entire body—body parts like your heart, lungs, stomach, bladder, muscles, skin, and even your eyeballs—and collecting information about how these body parts feel. For example, interoception collects information which helps your brain identify how your stomach feels: does it feel empty, full, gassy, nauseous, tingly or something else?
Your brain uses the information about the way your body feels as clues to your current emotion(s): are you hungry, nervous, tired, sick, excited and so forth?
Thus, at the most basic level, interoception can be defined as the sense that allows us to answer the question, “How do I Feel?” in any given moment….

…interoception is the very foundation of independent self-regulation.”

Mahler, (Accessed September 2023)

What is Alexithymia?

Alexithymia is the difficulty or inability to identify or “sense” one’s emotions. This then makes it difficult to articulate your emotional experience (Gray-Hammond, 2023). It could be thought of as a subgroup of interoception; emotions after all are an internal experience. Alexithymia occurs in around 50% of the Autistic population (Kinnaird et al, 2019).

What is stimming?

Also known as self-stimulatory behaviour, stimming is a repeated action that stimulates a particular sense, Autistic people may do this because the sense is under-stimulated, they may also do this because the sensory input is soothing and helps to keep them regulated. Hand flapping is probably the most commonly referenced, but it can include things like echolalia, listening to the same song on repeat, or spinning, etc. It can be self-injurious behaviour such as skin picking and head banging. Stimming is any repetitive behaviour that self-stimulates a particular sense.

Interoceptive stimming

Just in the same way that an autistic person may make repetitive movements or make repetitive sounds, it stands to reason that we may also engage in interoceptive stimming.

“repetitive, stimming behaviours, such as hand flapping and body rocking, are self-soothing and help to regulate the autonomic nervous system, which in turn generates interoceptive signals.”

Reframing Autism, 2022

What can interoceptive stimming help us understand?

Challenging Behaviour

Challenging behaviour are words that are commonly used to describe behaviour that is considered culturally unacceptable, societally abnormal, inconvenient, costly, or harmful and dangerous (Bromley & Emerson, 1995). Suppose that an Autistic person can not access or feel their emotions, much like when our proprioceptive sense is under-stimulated, we would seek proprioceptive input. We can also seek “emotional input”. Sometimes this can look like watching sad movies, or adrenaline seeking. However, sometimes it can appear as starting arguments or seeking to be dysregulated. This is often conceptualised as “challenging behaviour”.

Disordered Eating

“…there is a robust body of literature illustrating that alexithymia levels, both from a continuous and a categorical perspective, are elevated in individuals with eating disorders compared to healthy controls. Furthermore, individuals with eating disorders have specific deficits in identifying and communicating emotions.”

Nowakowski et al, 2013

Hunger is an internal sensation. Therefore, the feeling of hunger can be a form of interoceptive self-stimulation. Coupled with other sensory differences such as texture and smell aversion, this could look incredibly similar to disordered eating.

“…in the absence of accurate interoceptive representations, one’s model of self is predominantly exteroceptive.”

Filippetti & Tsakiris (2017)

What this means is that those with under-sensitive interoception will create their sense of self, and self-beliefs from external happenings, i.e. autism + environment = outcome. This is referred to as being suggestible or suggestibility. The way that neurotypical disordered eating is commonly addressed is as issues surrounding body-image. In Autistic people that are highly suggestible due to under-sensitive interoception, neuronormative ideas around the origins of disordered eating can create a self-fulfilling prophecy of body image issues when in fact, building the interoceptive sense may serve to be a more effective intervention; it may also avoid people internalising neuronormative self-beliefs that are not accurate.

Hypersexuality

Hypersexuality can also be a form of interoceptive stimming. Sex, masturbation, and related activities can serve as a vehicle for stimulating the interoceptive sense. Granted, many Autistic people have other sensory needs that makes engaging in intimate acts difficult. However, the other side of the sensory coin can be found in Autistic people who use sex and related activities to stimulate the senses and would traditionally be framed as being “hypersexual”. Coupled with suggestibility and social differences, and the rates of vicitmisation of Autistic people (Pearson et al, 2023), we can see why this can and does create a very big problem.

In conclusion

The above examples are just a snapshot of how understanding interoception can help us understand our Autistic selves and our Autistic loved ones. We must remember that for every Autistic person who is hyposensitive to interoceptive input, there are probably just as many who are hypersensitive. We can both seek and avoid interoceptive input. Sensory experience can also be dynamic dependent on our regulation levels and environment. What we seek on one day, we may avoid the next. By being aware of interoceptive stimming, we can be more aware of the need to find alternative routes to meeting interoceptive needs.

References

Bromley, J., & Emerson, E. (1995). Beliefs and emotional reactions of care staff working with people with challenging behaviour. Journal of Intellectual Disability Research, 39(4), 341-352.

Filippetti, M. L., & Tsakiris, M. (2017). Heartfelt embodiment: Changes in body-ownership and self-identification produce distinct changes in interoceptive accuracy. Cognition, 159, 1-10.

Gray-Hammond, D. (2023) What is alexiathymia? Emergent Divergence

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Mahler, K. (2023) What is interoception? kelly-mahler.com

Nowakowski, M. E., McFarlane, T., & Cassin, S. (2013). Alexithymia and eating disorders: a critical review of the literature. Journal of eating disorders, 1, 1-14.

Pearson, A., Rose, K., & Rees, J. (2023). ‘I felt like I deserved it because I was autistic’: Understanding the impact of interpersonal victimisation in the lives of autistic people. Autism, 27(2), 500-511.

Reframing Autism (2022) Dissociation in How Core Autism Features Relate to Interoceptive Dimensions: Evidence from Cardiac Awareness in Children – A Summary for Non-Academics. reframingautism.org.au

David Gray-Hammond 1 Comments
Sep 11 2023
CAMHS have been contributing to the death of Autistic young people for over a decade

I was recently sent a BBC article regarding multiple deaths of Autistic young people occurring despite coroners issuing “prevention of future death” (PFD) notices. These notices are only issued when a person’s death is the result of systemic failings and are issued when changes need to be made in order to prevent future deaths. The BBC article looked through 4,000 PFD notices over the past 10 years, and what they found is harrowing.

What is the risk of suicide amongst Autistic young people?

According to the Royal College of Psychiatrists, Autistic children in the UK are 28× more likely to think about or attempt suicide compared to their neurotypical peers. This could be for a number of reasons, but I believe that trauma plays the biggest role in this. Autistic young people and adults experience traumatic events at a higher rate than non-Autistic people. From communication invalidation, to sensory trauma, even good old fashion gaslighting. Autistic people have a rough experience of the world.

It is unsurprising then that Autistic young people, whome some research estimates 94% are victims of bullying, so regularly experience such an inordinately high rate of suicidal ideation and attempts. We also have to consider that Autistic people often exist at the intersections of race, sexuality and gender, other disability, and class. As a result of this, their mistreatment may be compounded by multiple forms of marginalisation.

Why are CAMHS important to preventing the deaths of Autistic young people?

As mentioned previously, Autistic children and young people are significantly more likely to experience suicidal ideation or attempts. Where their is suicidal ideation, there is often psychological distress. I’m fact, according to the Mental Health Foundation; 7 in 10 Autistic people have a diagnosable mental health concern. From this, I infer that over two-thirds of Autistic children and young people need support from CAMHS.

Despite this very high rate of suicide and suicidal ideation, and mental health concerns, only around 10% of patients under CAMHS are Autistic. This represents a large disparity between the accessibility of services for Autistic and non-Autistic groups. This disparity is indicative of wider systemic failings in the support of Autistic children and young people and is supported by the BBC’s findings in PFD notices.

How are CAMHS failing Autistic children and young people?

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.

Quote from the above linked BBC article

The BBC investigation found 51 prevention of further death notices that pertained to the deaths of Autistic children and young people. 51 may not sound much amongst a group of 4,000, but it is. According to the National Autistic Society, over 1 in 100 (1%) people in the UK are Autistic. Of the PFD notices investigated by the BBC, around 1.3% were Autistic. This indicates to me that Autistic people are better represented in deaths regarding systemic failing than they are in the general population.

The screenshot below elaborates on some of the reasons found that control used to the loss of Autistic lives:

The five key concerns identified by the BBC as repeated issues in the deaths of Autistic children and young people, read article here.

What does this mean for CAMHS and Autistic wellbeing?

As I have discussed in previous articles about CAMHS; it is not enough to simply get through the doors at these services. We need them to be restructured and invigorated with new life. In their current form, CAMHS is not fit for purpose. Too many Autistic children and young people are losing their lives, and those lives are at the feet of a CAMHS that has time and again failed to do what it exists to do.

Autistic children deserve the same chance at a happy and meaningful life as any other child. CAMHS are not enabling that.

Click here to sign the petition about CAMHS

Click here to see details of the CAMHS protest at Downing Street

David Gray-Hammond 0 Comments
Sep 5 2023
Reclaiming Neurofuturism: Autistic embodiment and the enactment of neurodivergence

When we seek to describe our Autistic and otherwise neurodivergent selves, we tend towards discrete categories and observable definitions of what we mean. However, to be Autistic is more than a diagnostic category; while Autism is a defining part of my experience, I also enact neurodivergence. My embodiment gives definition to what people mean when they use words like Autistic, ADHD, AuDHD, or Schizophrenic.

Performing Autism

Tweet grom @simonharris_mbd

Like any of the diagnostic categories that have been assimilated into my identity, I perform them much in the way a neurotypical performs neurotypicality. Unlike the diagnostic criteria that bestowed these identities on myself, my performance is not containable. Every word that passes my lips, every action that my body makes; my existence gives meaning to the word neurodivergent. We often hear:

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

Unknown Author

I, however, would go one step further. Through our embodied relationship to the Self, we become autism. In the same way, I have become ADHD, and I have become Schizophrenia.

Queering the diagnosis

Autism does not exist as a separate entity, it exists as the embodied performance of ourselves. We choose the meaning that our identity has. We don’t have to be the Autistic that everyone else expects; through our performance of Self, We can redefine what people mean when they use words like Autism, Autistic, or neurodivergent.

We are both the writers and the actors in the performance of our neurodivergence. It is our job to deconstruct the politicised Autistic identity and replace it with the embodied and fluid definition that one might only find within the Chaotic Self. To word it another way; if we perform autism, that performance will change and evolve with each interaction with our environment.

Concluding Remarks

This lays a significant responsibility upon us as both individuals and a connected community. If we are redefining the meaning of autism and neurodivergence, it is on us to ensure that its definition is neither exclusionary or repulsive. The meaning of autism is written on our bodies, and we choose the words that write it into being.

We must strive toward a future free of the dichotomous standard of “meets diagnostic criteria” and “does not meet criteria”. Only when we break free of our politicisation and medicalisation can we truly explore the endless possibilities of doing autism.

David Gray-Hammond 0 Comments
Sep 4 2023
Autistic people, energy accounting, and boundaries

In my day job, I talk to a lot of Autistic people. I mean a lot of Autistic people. One of the most common questions I am asked is how to better account for limited reserves of energy and cognitive resources. The answer sounds deceptively simple, but in reality, it can be a really complicated practice. I’m talking about the creation and maintenance of boundaries in Autistic people’s lives.

Why are boundaries so complicated for Autistic people?

As Autistic people, we have grown up in a world that doesn’t care for our boundaries. We are taught from a young age that our needs and wants do not matter and that we should live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of intergenerational trauma.

For many Autistic people, our earliest memories are of people denying our sensory needs, invalidating our communication styles, ignoring the very things that would help us participate more equally in a world not designed for us. This means that by the time we reach adulthood, we are much less likely to be willing to maintain our own boundaries.

What does ignorance of boundaries teach Autistic people?

Autistic people are often accused of overstepping boundaries, especially in childhood. I would point out to the casual observer that we expect Autistic children to give more to society than society is willing to reciprocate. We teach Autistic children that boundaries do not matter and then penalise them for lacking awareness of social niceties.

There is then the wider issue of Autistic wellbeing. Adults with poorly maintained boundaries will inevitably experience lower levels of wellbeing than people who are able to sagely self-advocate. Autistic people often spiral in and out of burnout, unable to sagely set boundaries that are vital to their energy accounting.

How does ignorance of boundaries effect Autistic identity?

One aspect of the importance of boundaries that is rarely talked about, but very important, is that of its effect on our sense of identity. In my own life a lack of clearly defined boundaries kept my queerness closeted for decades. Because I was not able to advocate for.myself to others, I could not do the internal advocacy work I needed in order to identify my queer identity.

No one talks about it, but when you have grown up being constantly invalidated, you absolutely have to advocate to yourself. We have to battle and dismantle the internalised ableism and normativity that has kept us trapped within societies definition of “us” rather than exploring what the means to ourselves.

How can Autistic people begin to maintain boundaries?

Autistic people can begin to identify and maintain boundaries through self-exploration. For some, this may be an isolated affair, while others may engage with peer mentorship. This is where a sense of AuSociality becomes important. By socialising Autistically with Autistic people, we can begin to learn what our Autistic profile is and, therefore, what our unique set of strengths and struggles are.

When we know who we are and what we need, we are in a stronger position to begin self-advocacy to the wider world, and subsequently, we can begin to improve our sense of wellbeing.

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 21 2023
Here are the reasons why CAMHS endangers Autistic children

If you believe that there are no issues with the way that Child and Adolescent Mental Health Services (CAMHS) treats UK Autistic children and young people, I would direct you to take a look at the ongoing petition that has over 200,000 signatures. That’s a fifth of a million people who have witnessed the failures and harms exacted on Autistic children and young people by a service that is meant to save them.

Something that I keep coming back to is that CAMHS as a service needs to do more than open it’s doors to our children. In it’s current state, CAMHS could do more harm than good. I very strongly believe that in order for CAMHS to be a fit place to support Autistic people, they need to change on a fundamental level. In light of this, here are some of the issues within the current system.

Safeguarding instead of mental health care

One of the most common stories that we hear surrounding CAMHS is families of Autistic children finding themselves being referred to safeguarding services within their local authority (LA). This has become a prevalent issue that can make accessing services feel hostile and dangerous. Given that parents of Autistic children are often disabled themselves, it seems pertinent to note the increased rate at which they experience Institutionalised Parent/Carer Blame (IPCB).

This highlights a significant issue with the move over to Single Point of Access (SPoA) referrals. There can be significant disparities from area to area in triage outcomes meaning that Autistic young people and their families often do not get access to the services they need.

Lack of knowledge around Autistic and neurodivergent experience

I have spoken at length about the impact that a lack of cultural competency among professionals can have. In particular I would highlight this article I co-authored with Tanya Adkin. It is impossible for professionals to be safe for Autistic young people while they are lacking essential knowledge that can only be found by engaging with the Autistic community.

Many of the professionals within CAMHS are working from outdated and stereotyped knowledge around what autism looks like and how best to support Autistic people. This lack of knowledge can and does endanger the health and wellbeing of our children and young people. It highlights a level of disdain for minority communities when they ask for professionals to learn from them and not from an outdated textbook.

Poor handling of children vulnerable to exploitation

This is a significant issue for Autistic young people. In particular I think of the case of Ben Nelson-Roux. This young person died a victim of exploitation due to multi-agency failure (as documented in the linked article). Had CAMHS had a better professional practice regarding neurodivergence and exploitation, his story may not have ended in tragedy.

We have to highlight here the power that CAMHS have in cases such as these. When CAMHS fail to take criminal exploitation seriously, it has knock on effects for the support they receive from all services involved. CAMHS as a whole needs to be significantly more skilled in this area due to it’s prevalence among Autistic demographics.

Defensive Practice

Defensive practice occurs most commonly when services are more concerned with metrics than people. Within CAMHS this often manifests in refusals for support, and labeling service users as “not engaging” when inappropriate approaches are used for neurodivergent young people.

This might also manifest as the overuse or inappropriate use of restrictive practices and deprivation of liberty. Again, this tends to arise from a need to meet targets and achieve certain metrics rather than meaningfully support young people.

Gate-keeping of services

This one is the whole reason we’re here, and fits in with the aforementioned defensive practice. When you don’t have the skills to support a neurodivergent person, you simply refuse them access to services. This gate keeping is deadly for some young people, and trust policies that allow for it to happen play a role in the disturbingly elevated suicidality rate for Autistic young people.

Autistic people experience a great deal of psychological distress in a world that is actively hostile towards them, and yet CAMHS fails to provide them with meaningful support. In many cases they fail to provide any support at all. If we want to see an improvement in the metrics that matter (for example, measure of quality of life), much of the current mental health system in the UK needs to be restructured. This will not be a quick campaign, but it will be effective.

Please support the ongoing campaign around CAMHS and Autistic young people by signing this petition and attending this protest.

David Gray-Hammond 0 Comments
Aug 19 2023
Marginalised groups should not be responsible for ending stigma

When we think of stigma, we often think of awareness campaigns and personal disclosure of our struggles. On the face of it, these appear to be helpful in stigma reduction. However, as with all things like this, it is not nearly as simple as that. Autism has been the focus of many stigma reduction campaigns, but people are rarely Autistic as a standalone identity, and there are (more often than not) multiple marginalities within Autistic lives.

Autism is not the only sources of stigma in neurodivergent lives

When considering my own experience, one identity of mine that is particularly relevant to this conversation is Schizophrenia. Psychotic disorders have been positioned as the most “dangerous” of mental health concerns. People assume a poor prognosis with a high potential for violence.

Schizophrenia, in my opinion, is a good measure of saneism and ableism in society. Despite Schizophrenic people only having a modestly increased risk of violence, the media fails to report responsibly. Nuances such as the socioeconomic factors of violence in this population are rarely accounted for. In the same way, much of the stigma surrounding neurodivergence and other marginalised identities is driven by poor understanding of colonial oppression and sloppy reporting by journalists. When considering the sources of stigma in a person’s life, we have to consider intersectionality and minority stress.

Individualism and the stigma surrounding neurodivergence

When considering the role of individualism in the perpetuation of stigma surrounding neurodivergence, we have to first understand the role of psychiatry. The field of psychiatric medicine centres most neurodivergence ad “mental illness”. It places the issue within the body of an individual and requires them to “recover”. This individualisation is responsible not just for the coercion that occurs within the psychiatric profession. It is also responsible for the use of quack cures such as MMS and chelation “therapy” that do a great deal of harm.

The ableism and sanism that surround neurodivergence means that we are often coerced into harmful “treatment” or abused by those closest to us. We are dehumanised by stigma and forced to endure a world that views our existence as an abberation rather than a natural part of human diversity.

Why is it wrong to expect victims of stigma to tackle their own stigma?

When we consider marginalised groups, we have to consider that, for most of us, dismantling stigma is usually an expectation of free labour. Far too often, we are expected to expose the most vulnerable parts of ourselves to a world that, in most cases, will respond with vitriol. Raising awareness through vulnerability can be life threatening for many of us.

We also have to note the effect of privilege in stigma reduction efforts. White people such as myself are better able to expose the less acce0ted parts of themselves. If a BIPOC Autistic or Schizophrenic (considering my own neurodivergence) person were to lay bare their most hidden parts, their life could be endangered. For me, the stigma I face is dangerous, but not nearly as life-threatening as that of my further marginalised neurokin.

Conclusion

Marginalised people are left to raise awareness in a world that does not want to listen. It should not be us doing the work to dismantle stigma. Instead, those perpetuating it should be practising enough introspection to realise the conditioning that our neoliberalism world has used to dehumanised people such as myself. The expectation that we will do the work is fundamentally flawed in a world that does not care enough to practice insight.

Until such a time that wider society is ready and willing to see its own role in our oppression and marginalisation, we will continue to be mistreated. It should not be our job to tackle structural oppression while also trying to survive it. That is what most of us are pouring our energy into; survival.

David Gray-Hammond 0 Comments
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