So on my social media pages connected to this blog, I tend to use the word ‘autistic’ opposed to person-first language like ‘person on the spectrum’ or ‘person with autism’, which is a very intentional choice. Today on Insta, a service provider in the autism space wanted to get her head around my preference for the language I use surrounding autism, as she wanted an adult autistic perspective. Her training had been to always use ‘person first language’, so my choice of language is probably quite confusing. Because I absolutely loved this question, I thought I would turn my response into a blog post. I will however preempt this by making note that language preference is a very personal issue for some and you should always try to use the language that the person you are speaking to prefers (when known). Also, my opinion is just that……MY preference, and my opinion…..I don’t pretend to, and don’t speak for the entire autistic community (that would be impossible).
‘Person with Autism’ v ‘Autistic’
- In my work I have been asked to use ‘person on the autism spectrum’ in all the content I write as it is deemed to be the terminology that seems to be the least contentious – although in Australia many of the larger organisations are shifting back to using the word ‘autistic’ after listening to the community.
- In my personal life, I use autistic because autism is completely pervasive. It affects the way an autistic person sees, does, feels, communicates, thinks etc etc etc. Whilst autism doesn’t define someone, it DOES affect the way they do pretty much everything in life…..so they are not ‘a person with autism’. Autism isn’t with someone, because they can’t detach it if they want to. It doesn’t come along with you like a backpack, that you can put down somewhere when it gets heavy…..it’s a fundamental part of who you are.
- I have found that it is mainly well-intentioned professionals in the autism space pushing for the person-first “person with autism” thing. The rationale is that we have to see the person before the diagnosis, and I get that. However, is you ask MOST adult autistics what language they prefer, it is “autistic” or “aspie” if they were originally diagnosed with Asperger’s under the DSM IV (which no longer exists in the current diagnostic manual). Most autistics don’t consider ‘autistic’ a negative term (unless it’s negatively-loaded contextually).
- I LOVE when professionals in the field, actually take the time and ask you what your preference is. Many professionals just like to tell us whatever the autism field (made up primarily of neuro-typicals) has determined to be right. Although, I think it can be difficult for service providers, because the pressure from your boss might be one thing and your client might prefer something different.
The term ‘special needs’
- With regard to the term ‘special needs’, autistic’s needs aren’t particularly special. They are just human needs. For some autistics they may have more need for assistance than a typical person, but it’s not ‘special’. Unfortunately I don’t think there is a really suitable replacement for this term yet…. I just try and avoid where possible. I also avoid the terms ‘disability’ (I like diffability) and ‘disorder’ because the autistic brain isn’t disordered and autism isn’t necessarily a disability (although it can be depending on the individual).
The terms ‘high and low functioning’
- Now here is terminology that is pretty unanimously disliked within the autism community – ‘high and low functioning’. If you polled autistic adults about these terms, I think about 95% would say they are not nice labels, for a variety of reasons but I will just touch on why it’s not an accurate measure (there is a whole post’s material on why these terms are not appropriate though). Autism isn’t a linear scale of functionality. Myself for example: my written communication skills are well above average. My verbal communication is slightly below average, except for things like literal language, idioms and sarcasm….. with those parts of language I am well below average – but I like to think I am well spoken. My social functionality is well below average, but my theory of mind is well above average. My nervous system is rubbish, but my coping skills to manage it are great. Every time I have to deal with the tiniest change I crumble internally, but cope outwardly (although as a child I hadn’t learned these skills yet)….. So where does someone like that fall on the functionality scale? Plus I know ‘high functioning’, twice-exceptional types with master’s degrees who aren’t employed because their anxiety and ability to cope with change leaves them unable to leave their house….. But there are non-verbal autistics who have also been diagnosed with an intellectual disability who manage entry level jobs and live semi-independently….. To me the latter is far more ‘functional’ at life, but they are labelled as ‘low-functioning’. It’s a stupid measure. If there is a legitimate need to talk about a child’s, client’s, whoever’s ‘functionality’ there are much more accurate, person-centred ways of doing so.
- Just as a final point which kind of relates to the ‘high/low functioning’ terminology, but is mostly just something I would like throw in here because I can as this is my platform. A lot of people assume that if someone is non/partially verbal that it automatically equates to ‘low functionality’/cognition (intelligence). This is not true – there are a lot more reasons that someone may not be able to speak than just low cognition, and I think augmentative and alternative communication (AAC) has been very effective in demonstrating how much people who cannot speak/speak well often know. Verbal communication ability is not indicative of level of intelligence, I mean hey look at some of our political leaders. They do a shit-load of talking, but a lot of them don’t have their brain engaged when running their mouth.
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