A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person) by Dr Chloe Farahar

Dr Chloe Farahar | University of Kent | Aucademy.co.uk | SoYoureAutistic.com

This blog has been distilled into an animation of less than 15 mins on the Aucademy YouTube channel.

Is identifying with social groups beneficial to people’s health and wellbeing?  Whilst marking undergrad essays on this question back in 2020 – my mind began to wander, as it is prone to do, to Autistic things.  Although my PhD was in the field of social psychology – attempting to reduce mental health stigma with the neurodiversity narrative – I had become so engrossed in my little sliver of the field I forgot about other social psychological theories and approaches.  I researched the references my students were citing and made a short Twitter thread of my thoughts regarding the psychologically important difference between being a “person with autism” and an Autistic person. The difference between belonging to a stigmatised group, and the social cure properties of strongly identifying with an Autistic identity. In this blog I will expand on that Twitter thread, there are some important concepts that I won’t explain here, but you can link to this glossary. These issues have also been expanded in an invited chapter for the Routledge Handbook of Critical Autism Studies, titled: Autistic identity, culture, community, & space for wellbeing, due to be published September 2022).

What is in a name?  The process of stigma

To be a “person with autism”, a person labelled – sometimes officially – with a medical disorder, means we as Autistic people are categorised into a certain box.  Even before being diagnosed or knowing of our diagnosis our behaviours are called out as “odd”, “weird”, we are labelled “standoffish”, “cold”, “unapproachable” (see picture below).  This labelled box – “person/people with autism” – is imbued with meaning, with values and assumptions that dictate practice (i.e., action; Prilleltensky, 1997).

This picture of Annette’s shoulder with words written in Sharpie permanent marker is a part of a performance piece Annette performed with other Autistic people in 2019.  Annette bears three words used to describe Chloe throughout her adult life. These words “cold”; “standoffish”; “unapproachable” were internalised until Chloe discovered she was Autistic in 2016.  

A case in point: Greta Thunberg.  As well as receiving sexist, misogynistic attacks, Greta has been harassed, stigmatised, and infantilised for being “a person with autism”, receiving the sorts of comments Autistic people hear far too often, such as how Greta: is a “mentally ill Swedish child”; “deeply disturbed”; is a “girl [who] has a cyborg face that ignores emotion” (I will not link the original perpetrators of these insults, they are undeserving of the citations).

These insults happen for a reason. Largely they are a tactic to discredit Greta’s activism.  What I am highlighting, however, is the content of the attacks, the narrative that is being told, and consequently what Autistic people the world over are hearing: a pathologising “othering” of our experience of and with the world.  Our difference is used against us, embedded in a narrative that we are not normal, that we are abnormal, that we are disordered “people with autism”.

“But what’s wrong with stating you’re a person with autism – it’s what you are isn’t it?  And we’ve been taught it’s polite to put the person first!”. 

When someone insists that I am a “person with autism” they are telling me that they believe I “have” something that if science could eradicate would mean I would be “normal”.  It is not non-autistic people’s fault, the “culture of autism” (Anderson, 2013), the dominant narrative – one of many, and not even the most persuasive – tells you, tells me, that I “have an autism spectrum disorder”.  Break that phrase down.  I “have”, not I am, but I have.  I carry, I could theoretically put down autism.  And this is offered as the preferred outcome, the ability to be removed from “my autism” because I am “disordered”.  Disorder, illness, sickness – something attached to me, something not desirable, not meant to be there, without which I would be well, normal, “healthy”.  Disordered because the language used to describe my experience and interaction with the world is one of deficit, where I lack “typical and normal functions” dictated by a faceless society and a faceless medical body.  Where I was diagnosed under these criteria:

Autism as an abstract concept is defined as a persistent impairment in reciprocal social communication and interaction; restricted and repetitive patterns of behaviour, interests, or activities; all of which may relate to hyper-reactivity (avoidance) or hypo-reactivity (sense seeking) to sensory input – with or without accompanying intellectual disability and/or language impairment. (DSM-5; American Psychiatric Association, 2013; ICD-11: World Health Organization, 2019).

 Belonging to a stigmatised group and internalising the stigma negatively affects psychological & physical health

The medical diagnosis in itself is stigmatising, it ignores any possible strengths and capabilities I and my fellow Autistic community members have.  Yes, including those classed as “low functioning”, those with intellectual and language disabilities.  We hear the words deficit, low and high functioning (like we are robots with cogs and gears that are functioning sub-optimally), social communication impairment, restricted behaviour – we hear we are the problem, the disordered person, and we internalise this narrative as self-stigma (Corrigan & Rao, 2012).

This happens because we are led to believe there is such a thing as normal, that anything that deviates is thus abnormal.  Not different, not merely divergent, but disordered and abnormal.  If the dominant narrative, those around you, the films and shows you watch, the books you read, the school you are educated at, the lessons you learn as part of the curriculum, the regulations in workplaces, and the people who employ you, the police, mental health services, diagnostic manuals – everyone – is telling you, you are wrong, you “have an autism spectrum disorder”, that you are thought of and treated as less than others, where you are infantilised, or feared, avoided, or detained – it makes it nigh on impossible to have a positive sense of self, a positive social identity based on the fundamental experiences one has of the world.

The language, the narrative, feeds embodied actions of those who are non-autistic – neurotypical, neuronormative – around us, and these become internalised.  I belong to the category “people with autism”.  This category is imbued with stigma – negative labelling (not all labels are negative); stereotyping attitudes; prejudicial affect; and discriminatory behaviours.  Belonging to this category is isolating, depressing, hopeless.  I am socially cursed by belonging to the category of “people with autism”.  As you can imagine, both the public and internalised, self-stigma has a negative impact on one’s psychological and physical health.

As a population, “people with autism” experience greater traumatising experiences such as bullying (Cappadocia et al., 2012; Fisher and Taylor, 2016) and loneliness (Lounds Taylor et al., 2017; Orsmond et al., 2013).  For being different, we are more likely to be victims of neglect and abuse (Griffiths, et al., 2019).  We experience higher baselines of anxiety than neurotypical people (Crane, et al., 2018; Strang et al., 2012), greater rates of depression, and higher rates of suicidal ideation, attempts to die by suicide, and the greatest cause of death for Autistic people without intellectual disability is suicide, where our average age of death is a mere 58 years (Cassidy et al., 2014; Hirvikoski et al., 2016; Strang et al., 2012).  We experience the same mental health concerns that affect non-autistic populations, but to a greater extent because of the link to greater rates of trauma (Griffiths, et al., 2019).

As a minority group, “people with autism” are likely to experience minority stress and stigma by virtue of non-adherence to societal norms and expectations.  Simply put, as a minority, “people with autism” are different to what is expected of members of society, and so we are thought of and treated differently.  This stigma leads to social disadvantages: as a minority, group members experience greater stress, and due to our standing in society we do not have the resources – social; psychological; material – to manage this stress (Botha, & Frost, 2020).

Protecting yourself from stigma vs protective power of belonging

However, one can protect oneself from this stigma to some extent via different means, e.g., distancing self from the group “I am not like those low [functioning] people with autism” or more closely socially *identifying* with the group *Autistic* so as to feel the effect of group protective properties, e.g., resources, peer support, meaning, belonging etc.”. And so, there can be a social cure (Jetten, et al., 2017).

There is hope if we identify with the social identity Autistic, connecting with Autistic Culture (autism is a reified, abstract construct, Autistic people, and our culture, less so).  Connecting with the Autistic community we can learn a narrative that makes logical sense of our difference, that provides connection, not isolation.  An Autistic community definition of autism defines our difference within the neurodiversity paradigm, where difference is difference, not less:

[Autism is a] neurodevelopmental difference, where Autistic brains work differently to non-autistic people. ​ There are as many different brains and ways of experiencing the world as there are different bodies. ​ There is a variety of Autistic people, just as there is a variety of non-autistic people, but all Autistic people share some similarities. ​ These similarities include: ​

• differences in experience of the sensory world, ​
• differences in communication, ​
• differences in thinking, socialising and moving​

Some Autistic people need support with day to day living, and within this perspective there is no one way to be Autistic.  (Autistic Self Advocacy Network, 2020)

“Culture of autism”

Autistic culture

·      Person with the disorder “autism” ·      Disease/disorder/illness ·      Mental illness ·      Problem/issue ·      Challenging ·      Violent ·      Deficit/impairment ·      Low functioning ·      High functioning ·      Severe/mild autism ·      Pathological ·      Symptoms ·      On the spectrum ·      Cure/treatment ·      Intervention/strategies ·      Risk of autism ·      Special interests ·      Awareness ·      Researched on

·      Neurodiversity paradigm – difference, social models ·      Focus on strengths, support for challenges ·      Language and customs – Autistic identification ·      Stimming language and activities ·      Community ·      Spaces and environments ·      Positive symbols ·      Fluctuating support needs ·      Specialisations ·      Shared commonalities (no spectrum, but existing in three-dimensional space; Farahar & Foster, 2019) ·      Understanding and acceptance ·      Research with, for, and by Autistic people

Table representing key components of the “culture of autism” versus Autistic culture.

Evidence is mounting that what is important for Autistic wellbeing is Autistic friendship, community, and peer support (Crane et al., 2018, p.10):

“I never realised everybody felt as happy as I do when I am around autistic people”: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. (Crompton, et al., 2019)

The Autistic identity, the community, help start the process of removing the life-long pain of prejudice and discrimination for being different – we start to scrub off the Sharpie drawn tattoos, together.  It hurts, it takes time, there is residue [Annette figuratively still has the sharpie residue: she will still apologise for her authentic Autistic interactions], but we can start to connect and heal.

Identity and authentic selves

I see the protective, social cure properties of community and space in my co-founded So, You’re Autistic? (Farahar & Foster, Home – about SYA?, n.d.) pre/post-discovery support programme, and University of Kent Autistics group.  Our aims in these community spaces are to help students foster a positive Autistic identity, to deconstruct the pathologising “person with autism” narrative, and ultimately, help bring previously isolated Autistic people together to foster a sense of community.  Creating these Autistic spaces (not non-autistic “person with autism” spaces) seems to encourage its members to be their authentic selves, without judgement.  Encouragingly, we also see an improvement in wellbeing, with reductions in harmful stims (self-stimulatory behaviours that inadvertently harm), depression, and burnout.

Where before we were isolated by our belonging to the group “people with autism”, we come to embrace the Autistic identity, culture, community, and space – we are no longer alone, we are connected – connected by one word: Autistic.

Evidence is also demonstrating the protective properties of a strong Autistic social identity.  For instance, Cooper et al. (2017) found that participants in their study who had strong Autistic social identities had greater collective self-esteem (for the Autistic community), which in turn predicted greater positive personal self-esteem, ultimately predicting reduced levels of anxiety and depression (which are high in the Autistic community).

 Ultimately, Autistic identity, community, culture, and ideally space/s protects against the stigma of belonging to the group “people with autism”. This is why, regardless of whether you personally agree that I am a “person with autism spectrum disorder” or an Autistic person, strong identification with the identity Autistic has important and protective wellbeing properties.

And so, as you can see, a rose (Autistic) by any other name (“person with autism”) reeks of stigma – suffused with negative stereotypes, prejudicial attitudes, and discriminatory behaviours.  Or, why it is more important for me to be respected as Autistic rather than a “person with an autism spectrum disorder”.

Thank you for reading.

 

Biography

Dr Chloe Farahar: late diagnosed, perpetually, enduringly, eternally, weird, odd, standoffish, but also beautifully, irredeemably Autistic. Dr Farahar is also an Autistic academic whose research interests revolve around her Autistic specialisations (not “special interests”).  Her specialisations include: reducing mental health stigma with a neurodiversity script Stigmaphrenia© (Farahar, 2012); supporting Autistic people with her co-founded So, You’re Autistic? post-diagnostic support programme; reimagining the spectrum as a three dimension Autistic space; and educating both Autistic and non-autistic learners about Autistic experience in her training courses.  She also may have been in Annette’s Adventures of Super Autie Gang (things we do for our friends!).

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