I have spoken widely about neurodivergent experiences. I have talked about my unique experience of addiction as an Autistic person, my psychosis as an AuDHD Schizophrenic. I have lamented over how society’s power structures have oppressed myself and people like me. I have spoken at length about how autism is a defining part of my core experience of reality.
One might think that on all of my years of writing, advocating, mentoring, training, and speaking, I have found somewhat of a recipe for communicating neurodivergent experiences. The truth of communicating those experiences, however, is more complex than that.
The Double Empathy Problem in Reverse
The double empathy problem has been effectively used to explain that communication differences between neurodivergent and neurotypical people essentially lay in a difference of cultural experience. We often think of this in terms of neurotypical people being unable to empathise with neurodivergent experience, but that same is true in reverse.
I can’t empathise fully with a neurotypical experience of the world.
How does this impact on the communication of neurodivergent experience
When communicating our neurodivergent experience, we have no point of reference within the neurotypical cultural world. It is a problem of solipsism, where one can only prove their own consciousness. One can only experience the world through our own mind.
Any part of that experience we communicate to others is filtered through their own subjective world. Their interpretation of our attempt to communicate our experiences is entirely dependent on a near infinite number of variables, the sum of which create a reality that may or may not be both identical or entirely different to our own.
Where one might communicate that they have a particular experience; that experience may have an entirely different meaning to another person. We are constructed by the infinite possible combinations of interactions within our environment, and therefore, we can not definitively communicate our experience of neurodivergence in an objective manner.
To put it another way, all objective truths become subjective when interpreted by human cognition.
Therefore, we must always be aware that when we communicate our neurodivergent experiences, no one other than ourselves can truly understand those experiences as felt by our own mind. We also can not explain neurodivergent experience to neurotypicals entirely accurately because we also lack that point of reference within their own reality.
This is why we need to embrace diversity of experience, even within our own neurodivergent communities. Others having a different experience to us actually increases the likelihood of a neurodivergent person successfully communicating our exact experiences.
Concluding with the infinite monkey theorem
The infinite monkey theorem states that if one gave an infinite number of monkeys, a type writer each, and allowed them to randomly hit keys for an infinite amount of time; eventually one of them would randomly type the entire collection of Shakespeare’s works.
With regards to the neurodivergent community at large, the more of us communicating our diverse experiences, the more likely that someone will eventually find a way of fully explaining neurodivergence to a neurotypical person. We need to embrace difference within individual experiences. Rather than ignore and exclude those ideas that don’t necessarily make sense to us, we need to integrate the knowledge they offer, and see if their augmentation can bridge the double empathy divide.
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.”
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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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.
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.
In my book The New Normal: Autistic musings on the threat of a broken society I have a chapter about Autistic social nature. Autistic people have widely been represented as being asocial, which is patently absurd. Autistic people have a rich and diverse social culture that has been ignored for a long time.
“One of the prevailing misconceptions is that as Autistic people we are overtly asocial beings. It is taken as common knowledge that we are the friendless weirdos who don’t understand social cues but can recite every train we’ve ever seen.”
Quote from The New Normal
A brief look at the research
Upon perusing the existing literature surrounding Autistic sociality, there is limited research into the social nature of our community. I might first start by situating us within the remit of The Double Empathy problem.
“It is also vital to remember how the double empathy problem as initially conceived was heavily influenced by sociological theory and that such social interactions happen within a continually negotiated and mutually constructed context”
The double empathy problem within the context of Autistic communication essentially positions us as having a different way of communicating and relating to language rather than a deficit. This difference arises from cultural differences and the relationships we have with the world power structures.
Due to structural oppression, our style of communication is often centred as an issue to be fixed.
“The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the ‘social brain’, or as possessing ‘zero degrees of cognitive empathy’. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people.”
So we now have a position whereby Autistic people do not lack sociality but instead experience a different form of sociality. This is what I refer to as AuSocialility or being AuSocial.
Despite indications to the contrary, the emphasis is often directed towards teaching Autistic people to learn non-Autistic social culture, despite this being uncomfortable or even harmful for us. Some research has argued that this should be the other way round.
“We recommend teaching not autistic people but rather non-autistic individuals about autistic sociality, in order to lower the burden on autistic interlocutors in cross-neurotype interactions and socialization”
Autistic sociality or the AuSocial presence of Autistic people can be conceptualised by the growing cultural practices of Autistic people. We have our own customs, use of language, moral values, and even recognise what would be the cultural equivalent of public holidays in the existence of things such as Autistic pride day and the reclamation of Autistic acceptance month.
Such cultural practices as body-doubling (a firm favourite for AuDHD people) where we use video platforms such as zoom to be present and parallel with others while working on separate tasks are a key feature of Autistic professional culture and sociality. One might also look towards our differences in the way we understand and process language as the formation of a dialect.
A key feature of AuSociality is the cultural practice of moral defence of minority groups. While the Autistic community is far from devoid of bigotry, there is a general atmosphere of protectiveness towards the multiply marginalised that isn’t experienced within the non-Autistic cultural space.
In summary, AuSocial culture is a complex and highly developed set of communication, language, and socialisation skills that can only be witnessed between Autistic people. Rather than being deficient in our social exchanges, we often achieve a great deal and naturally fight to try and improve the world for our neurokin.
Conclusion
Autistic people, like most humans, are inherently social beings. Despite testimony to the contrary (usually by non-Autistic professionals and researchers) we have developed our own AuSocial culture that stands diametrically opposed to those who would label us as asocial. Such cultural practices as those within the Autistic community serve to diminish the burden of existing with in a systemically violent society and serve an important protective function for our wellbeing.
I invite people to add their own examples of AuSocial culture .
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us.We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article.There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.
This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.
This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).
Trauma
Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?
There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.
There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.
So, what constitutes trauma in Autistic people?
First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.
We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.
We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.
“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”
Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.
“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”
Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).
A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.
“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””
Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.
Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.
Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.
Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile. I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.
We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.
All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.
The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).
“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”
Milton, D. (2012)
This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).
Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.
An ABA practitioner physically holding our hands still, is a form of restraint.
But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.
Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.
David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.
It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.
Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.
What does all this lead to?
Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.
Walker, N. (2021)
The next piece in this series will explore the systemic failings in identification and lack of accessibility.
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives.
I have worked within the voluntary sector, starting within the disabled children’sservice, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way.
With experience, passion, and an individualised approach in close collaboration withfamilies, I help them work towards holisticchild and family-centered solution
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