The importance of language – what’s in a name?

Hello, I am Chloe, I am a 35-year-old autistic woman. I am also a PhD student, an autistic consultant, a girlfriend, a sister, a daughter, and an aunty.

Compare this with:

Hello, I am a person called Chloe, I am a person who has lived for 35 years. I am a person with femaleness and a person with high/low-functioning autism. I am a person doing a PhD, and a person with autism working as a consultant…..

Being the literal person that I am (not person with literalness, I’m so funny!), if people insist on referring to me as “a person living with autism”: “Urghhh, how did autism get in here again?! I thought I locked the doors and shut all the windows, but it keeps getting in!”

Some will insist on calling autistic persons, “a person with autism/suffering from autism/living with autism” – and it’s important to consider why this is. Why is it acceptable, preferable, OK to describe myself, label myself as a woman – not a person with woman-ness/femaleness, a white woman at that – not a person with whiteness, but people insist on person-first language when it comes to my autistic experience?

beth wilson with autism

beth wilson with autism 2

MUST see Beth Wilson art – their work is fantastic, as you can see above.

To be clear, the majority of autistic persons prefer identity-first language (which is autistic person, not person with autism), the same way that many of us don’t even think twice about calling ourselves: a woman/(insert your gender here); student/employee/mother/father/brother/third cousin twice removed; white/black/Indian/Asian…person

Morton Ann Gernsbacher, 2017


Many will lament that I must be called a person with/living with autism because I am a person first, because I am more than a label. I agree, I am more than a label, and being autistic is more than a label, more than a diagnosis, more than a misunderstanding that I am “disordered”. It’s a community, a social identity, a life – my life. I am autistic – it colours every aspect of my interaction with and experience of the world. I am autistic because I know that I am not disordered, that I have a neuro-divergent, neuro-developmental difference.

labels which would you prefer
Above reads “Why would I want to be labelled you ask?” – followed by a label that has words such as “weirdo; odd; freak; worrier; strange; shy; slow; fussy”- then “Well, which one would you prefer?”, followed by two labels “Autistic” and “ADHD” – by Neurodiversity Now.

When someone wants to use person-first language, to remind themselves that I am a person, they do so because they are under the misunderstanding that autistic experience is a pathology, a disorder, when this is not how many autistics, their allies, and professionals and researchers understand autistic experience.

LOUDLY for those in the cheap seats: I am not disordered, and so I do not “have autism”.

And so, what you mean when you insist on calling me a “person with autism” is that you already view my autistic experience as some “curable/removable/disordered” thing that is and should be separate from me. And this is more about your view of my experience than it is about personalising me. If you need to be reminded that I am a person, that I am human, that I am an autistic person, an autistic human this is a reflection about your own assumptions, misunderstandings, and bias.

So, being as clear as I can: there is no such thing as “Autism” (capital “A”), only autistic people because we are individuals, and if you’ve met one autistic person….you’ve met one autistic person (adapted from Shore, 2017). The easiest way to keep from falling into the trap of calling someone a “person with autism” is to remove the word autism from your vocabulary all together. There are very rarely good reasons to use the word autism where autistic would not be more appropriate.

identity first autistic.PNG

Identity-First Autistic campaign

Ultimately, the only people who can decide how someone or a group of someone’s are to be referred to, spoken about, written about, addressed are the very people this language is about – that’s us, the autistic community. Not our allies, not our non-autistic parents/family/friends, not non-autistic people, not professionals, not clinicians – us. And if you are not a member of our minority, if you do not live autistic experiences then you cannot and should not force language on to us. To do so is to remove our autonomy – and this is an act of prejudice and discrimination, this is oppression.

If, when you hear autistic you think, imagine, envisage a disordered person, someone banging their head, rocking (some of us do this, it’s not a horrible thing – it serves a purpose) – then of course you want to remove autism from us by calling us a “person with autism”. 

If, on the other hand, you hear autistic and think, imagine, envisage a community, an amazing and diverse group of people with different ways to the (ideological) majority of experiencing and interacting with the world (including head banging and rocking) – then there is no awful disorder to remove form us, we are, in our diverse community, autistic.

Other problematic language that has been placed on us, not developed by or even with us:

“High” and “low functioning” (synonymous with “mild” and “severe”): These phrases are not diagnostic terms, and are actually used as lazy short-hands typically by researchers wanting autistic research participants who are orally verbal (note the word “orally”, as many autistics are verbal via non-oral means). These terms are insulting and inaccurate as they put the onus on the individual and how they “function” or do not, as if we were cogs in a machine or a robot! They completely ignore the variability of support needs an autistic person might need as dependent on ever changing factors.

We can talk instead about support needs (e.g. minimal; moderate; greater) – as this is about the environment supporting the individual to thrive in whatever meaningful way that might be for the individual. And support needs alter on a regular basis, dependent on sensory environment (burnout etc.); resources; context and situation; physical illness (even having a cold). One day/week/month/year we might have no/minimal support needs – the environment, our personal circumstances and so on mean we only need minimal-moderate support (anti-anxiety medication; a mentor), and other days/weeks/months/years we might have moderate-greater support needs (mentor; communication aid/s; carers). This is not about our “functioning” or lack thereof – it’s about everything around us, our interactions, our personal circumstances at a given time.

When support is based on the needs (at a given time) of the individual, autistic persons are placed on a more equitable footing – there is no negative judgement placed on differences in support needs when the goal is to (ideologically try and) bring all autistic people to a position where they can thrive.

Equality-Vs-Equity..final-edit-1
And so, our autistic experience is not “low” or “high functioning”, it is not “mild” or “severe” – “mild or severe autism” means other people are experiencing you “mildly” or “severely”. Remember, this language reflects other people and how they experience you – it does not reflect you. We do not “suffer from autism”.

As Kieran Rose (The Autistic Advocate) expresses: “Suffering doesn’t stem from Autism, it stems from complex co-occurring conditions, needs not being met sufficiently and the extreme anxiety generated by both.”

“Symptoms of disorder” – Autism is a neuro-developmental condition – a difference, not disorder (there is professional discussion on officially changing the diagnostic manuals to reflect this). As such, it is not a pathology, illness, disease, or disorder, but a natural variation in neurological development and experience of the environment. We cannot talk about symptoms, as this implies disorder etc. We can talk about experiences, and if you really have to you can talk about behaviour – but there is no underlying pathological disturbance in our neurology, and at present there is no evidence for a universal genetic, neurological or biological indicator (see e.g Yale scientists, Holmes & Patrick, 2018; Pua et al., 2017). Without pathology, without tests for pathology (autistic assessment does not look at neurology, merely patterns of behaviour) there can be no symptoms.

“Everyone’s on the spectrum” no, they’re not! And this can be equally as insulting as the high vs. low functioning idea – you are autistic or you are not. We all have the same “brain stuff” (chemicals, anatomy, matter, similar neural functions etc.), but there is arguably a difference in how autistic brains are “wired” (although at present we can’t see autism with imaging tech.; Pua et al., 2017). All of the human race are capable of/have e.g. sensory experiences and interactions; anxiety; happiness; anger; “fidget”/stim behaviours; etc. – autistics just tend to experience these things to an extreme that impacts daily experiences and relating to others who are not themselves autistic.

Think of it this way: you have two people in front of you. One autistic, one not. Both don’t “do” hugging, and yet the motivations for these outwardly similar behaviours are different. The autistic person cannot physically hug – it causes physical, sensory pain/discomfort, and there’s the added social element – hugging people we do not really know, or in strange contexts is confusing and avoided. The non-autistic, on the other hand, does not hug because their family were never big huggers, or perhaps because they have had traumatic relationships with people and so do not do that form of intimacy, or perhaps again they have fallen prey to the social norms of what physical interaction is appropriate as dependent on e.g. gender. And this is just one, simplified example.

So, while all humans are capable of similar experiences, what makes an autistic person autistic is the quantity, quality, and importantly (involuntary) motivation for thoughts, feelings, and behaviours – we have qualitatively different experiences of the sensory and social environment to non-autistics, those not on the spectrum.

the aspergian - spectrum

Above by The Aspergian

“Disorder”, “condition”, or “neuro-divergence?”: The social category neuro-diversity affords individuals a sense of uniqueness and personal identity (diversity and divergence)...whilst fulfilling a need to belong to something greater than themselves – a social identity (Brewer, 1991).

Neuro-diversity as a category creates a superordinate category that includes all of the human race as a species, allowing the “I” to become “we”’, without losing the self in the process. Autistic people are considered a (societal) neuro-minority, and an individual autistic a neuro-divergent person (divergent only from societal ideas of neuro-typicality). For a more in-depth look at the language SYA? uses, see here and here.

“Autistic vs. Asperger’s”, Asperger’s has been removed from the Diagnostic and Statistical Manual (DSM-5, 2013) and International Classification of Diseases (ICD, 2018), with the understanding that people previously considered “Aspie” are on the spectrum with other autistic people. Many in the community welcome the inclusivity of the autistic diagnosis over the separatist nature of the autism vs. Asperger’s distinction. For some, this is similar to the issue of functioning labels, where it is inappropriate and inaccurate to consider someone as “high functioning Asperger’s” and another as “low functioning autistic”, as this language and concept ignores the struggles of the former, and the strengths of the latter.

“Male vs. female autism” – there is no such thing as “male” or “female” autism, as gender is not a purely binary concept, and can be very fluid within the autistic community. Incorrect assumptions are made about “female” and “male” autism (see here for issues with the theorising of autistic experience).

“Male” autism (more external type phenotype, e.g. observable to others) – arguably psychology knows a lot!
“Female” autism (more internal phenotype, e.g. less observable to others) – psychology knows very little (or we just don’t focus on it enough in research, but this is starting to change)
Non—binary, and trans (LGBTQ+) people are VERY forgotten and invisible in the research and may be less likely to be diagnosed.

Arguably, there is no male or female autism – this is not inclusive of the spectrum of gender.

Due to the lack of understanding of what “female”/internal autism is like, there are now a lot of women/non-binary/trans who are only being diagnosed when they reach adulthood. Preferable to talk about internal and external phenotypes on a spectrum – or better still, in a three dimensional autistic space (future publication in the works, fingers crossed!).

Terms to understand yourself and the world we currently live in:

  • Masking/Camouflaging/Mimicking = appearing “non-autistic”/suppressing autistic expression to fit in
  • Sensory differences and difficulties
  • Overwhelm, shut-down, melt-down = typically the result of sensory overwhelm (too much noise; bright/harsh light; bad smells; physical touching etc.) and socialising/being around other people for too long (or people who drain you)
  • Burnout = when you have experienced a lot/intense overwhelm and/or meltdown (can be confused with depression)
  • Inertia = an inability or difficulty changing from one state to another (physical, cognitive, or emotional state)
  • Alexithymia = difficulty knowing how you feel and/or difficulty expressing/articulating how you feel
  • Spoons = energy, relates to spoon theory
  • Stimming = self stimulation. All humans stim – fidget, click pens, bounce legs. We do it more, with more things, and it helps us regulate how we feel. These can be stims of happiness, frustration, anger, anxiety, overwhelm and so on.
  • Neurodiversity, neurodivergence, neurotypical = the language of our people =D
  • Ableist = “Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterised by the belief that these individuals need to be fixed or cannot function as full members of society” – #AbledsAreWeird
  • Social model of disability = many in the autistic community (largely you can find us on Twitter under #ActuallyAutistic) perceive themselves as disabled (in-keeping with autism being a disability in the eyes of the law and consequently we are protected by the The Equality Act 2010), but only because the physical and social environment is not built for us. The social model of disability maintains that with accommodations we may no longer be disabled, or at least not to the same extent.
  • Autism Acceptance = not “awareness” month in April (but we do need understanding and empathy). Historical issues with awareness month being overshadowed by damaging organisations entrenched in the pathology paradigm, e.g. avoid Autism Speaks (autism does not speak unless autistic people are talking); light it up blue; and puzzle pieces.

References

Brewer, M. B. (1991). The social self: On being the same and different at the same time. Personality and Social Psychology Bulletin, 17(5), 475-482. doi:10.1177/0146167291175001
Holmes, A. J., & Patrick, L. M. (2018). The myth of optimality in clinical neuroscience. Trends in Cognitive Sciences, 22(3), 241-257. doi:10.1016/j.tics.2017.12.006
Pua, E. P. K., Bowden, S. C., & Seal, M. L. (2017). Autism spectrum disorders: Neuroimaging findings from systematic reviews. Research in Autism Spectrum Disorders, 34, 28-33.
Shore, S. (2017). Retrieved from: https://the-art-of-autism.com/favorite-quotes-about-autism-and-aspergers/

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