I was recently a guest lecturer on a university course for teachers studying inclusive classroom practice. Before I began, I asked everyone to let me know if they were neurotypical or not. With one or two exceptions where people said they were not sure everyone answered swiftly: “I am neurotypical,” “I am neurotypical,” “I am neurotypical” and so on.
I pointed out to them that not one person had described themselves as “A person with neurotypicism.”
But first and foremost, before your neurology you are a person. It is important that we state that first. You are a person with the brain that you have, not a person defined by it. Isn’t that right? Which part is you and which part is your neurotypicism?
Could I point to a part of me that isn’t autistic? I, my very self, is autistic.
We all know that it is good practice when it comes to speaking about people with learning disabilities to use person first language. To remind everyone that this is a person we are talking about, not a condition.
But I wonder whether there isn’t something a little worrying within that. Do we need reminding that people are people? Let us look again?
That ‘with’ is a form of judgement. What we are saying when we position something in a sentence away from the person, is that the something, whatever it maybe, is negative. We want to keep it separate from the person, to protect the person in some way from it. And the ‘with’ is what we use in language to do that.
For example, in my own practice I would always say “A person with epilepsy.” I’d be very keen to separate epilepsy from the people I know who live with the condition, I wish that there was more I could do to those ends than just use the word ‘with’. If you told me you were looking to cure epilepsy I would be right behind you.
That ‘with’ is a judgement that says the next thing is bad.
Think of how you describe yourself: you probably state things like your gender, your sexuality, your race, you religion as “I am” statements. You do not hear people saying “I am a person with femaleness” “I am a person with gayness” “I am a person with whiteness”. When people state “I am white” they do not follow it up with an explanation that not all white people are the same, or that being white does not define them, those things are already understood.
The autistic community is very clear: we prefer identity first language. “I am autistic” not “I am a person with autism”. And yes, everyone on the spectrum is different and some individuals will choose person first language and that is their right to do so. But in general, the autistic community choose identity first language. (This was something I researched extensively in writing The Subtle Spectrum if you are curious to read more you can explore the references provided below).
Why does this matter? Is it just playing with words?
Well it matters enormously because inherent in that judgement of ‘with’ is a prejudice that says an autistic brain is worth less than a neurotypical brain. Autism is a brain difference not a brain defect.
Prejudice against autism, even little micro aggressions like ‘with’ing, has big consequences for my life outcomes. That prejudice has (as you can read in The Subtle Spectrum) threatened my life on occasions, both in terms of physical and mental health. And I am someone who would be described as having low support needs. That prejudice is dangerous to me as someone who does not lead a particularly challenged life, how much more dangerous is it to someone who faces more challenges than me?
Research is also beginning to show more and more that adopting, accepting and embracing autistic identity, has a positive effect on outcomes for autistic people.
There are parallels to be drawn with the gay community. Think of the incredible pressure homosexual people have lived through, and in some parts of the world continue to live through, to appear as if they were heterosexual. When you live under that pressure it threatens your mental and physical health. Would we conclude that being gay causes mental illness? Happily, not any more. But, in places where people have to lead closeted lives, then of course we see a rise in mental illness. When people are allowed to fully be who they are, and can celebrate that, that is healthier for everyone.
Embracing difference is not just beneficial for those with clearly definable differences, it is beneficial to everyone’s wellbeing. In a world where difference is embraced we are all free to be our authentic selves.
I am a woman. I am a mother. I am a daughter. I am a wife. I am straight. I am white. I am British. I am a teacher. I am an author. I am Autistic. Who are you?
Joanna’s son became the UK’s youngest published author in 2020 with his book My Mummy is Autistic.
Joanna’s 8th book The Subtle Spectrum comes out in June.
Both books are published by Routledge.
References
Autistic UK CIC (2020) Identity-first language. Autistic UK CIC. https://autisticuk.org/resources/identity-first-language/
Bonnello, C. (2018) 11,521 people answered this autism survey. Warning: the results may challenge you. Autistic Not Weird. https://autisticnotweird.com/2018survey/
Brown, L. (2011a) Identity-first language. ASAN. https://autisticadvocacy.org/about-asan/identity-first-language/
Brown, L. (2011b) Identity and hypocrisy: A second argument against person- first language. Autistic Hoya. www.autistichoya.com/2011/11/identity-and-hypocrisy-second-argument.html
Gernsbacher, M. A. (2017). Editorial perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 58(7), 859–861. https://doi.org/10.1111/jcpp.12706
Identity-First Autistic (n.d.) Autistic is not a dirty word. www.identityfirstautistic.org/
Jess at Diary of a Mom (2012) Person first: An evolution in thinking. Thinking Person’s Guide to Autism. www.thinkingautismguide.com/2012/07/person-first-evolution-in-thinking.html
McCann, L. (2017) Why I am changing my language about autism. Reach Out ASC. at www.reachoutasc.com/blog/why-i-m-changing-my-language-about-autism-1
Milton, D. (2017) Difference versus disability: Implications of characterisation of autism for education and support. In R. Jordan (ed.), The Sage Handbook of Autism and Education. London, UK: SAGE.
Rose, K. (2017) I do not HAVE autism. The Autistic Advocate. https://theautisticadvocate.com/2017/10/i-do-not-have-autism/
Sinclair, J. (1999). Why I dislike “person first” language. http://web.archive.org/web/20090210190652/http://web.syr.edu/~jisincla/person_first.htm
Sparrow, M. (2017). Labels are valuable tools. Thinking Person’s Guide to Autism. at www.thinkingautismguide.com/2017/11/labels-are-valuable-tools.html
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