Neuro Talk

Day Seven: Autism Awareness Blogathon

It’s often said that autistic people are just ‘wired differently’. There’s an evolving language that goes with that idea. This has mostly come about because more and more autistics are able to represent and advocate for themselves. They are choosing the terms they want to use to identify themselves as individuals, as a community.

A by-product of this is that there are new terms to describe those of us who don’t have autism. Get ready folks – it’s your turn to live with a label. Non-autistics are neurotypical or NT for short.

I’m still working out my own understanding of some of this language and where I stand on the ‘person first’ language politics. I’m hoping that by the end of this post, I’ll have a clearer idea about the language of autism.

The neurodiversity movement developed in the late 90’s as online communication became more accessible and people with shared interests were able to come together from around the world. These days that voice is stronger and louder than ever.

The concept of neurodiversity is that the different wiring is simply a part of the breadth of what it means to be human. The same as racial, gender, cultural and other differences are. Neurodiversity presumes & promotes tolerance and respect for these differences. No cures thanks. We like who we are.

Sounds fairly simple except that, of course there are layers and complexities. Autism is a broad term that covers everyone from the brilliant and articulate Aspergian to the non-verbal, hypersensitive, socially distant perseverating stimmer and everyone in between. That’s why they say it’s a spectrum.

For me, the complexity lies in the ability to communicate. Options are more open for those who are able to say what they do and don’t want and who are able to find a place in the world that is meaningful to them. There are fewer options for those who require constant care and supervision, who are unable to keep themselves safe, who are bullied, ostracised or worse, who must ‘behaviour’ their communication, who can’t answer the question ‘would you like to be a fluent communicator?’ Knowing how the ability to communicate eases your way in the world and as a mother I can’t help but think that they would. So neurodiversity is fine if you have the capacity to understand and express that it is.

I certainly respect the rights of others to be just who they are. If you want me to call you autistic and not ‘a person with autism’, I can do that. I can even accept another label for my little boy. Just add it to the list. It doesn’t change who he is.  Change and adaptation is relatively easy for me. I’ve always appreciated difference and try (for someone from a white, first world life experience) to be open to new ideas and perspectives.

As my boy is becoming better able to express himself, his frustrations are lessening and he is able to manage himself a bit better. He’s happier because of this and I’ll continue to do my utmost to help him to be happy, to enjoy his life and to reach his potential. Just as I do for all the kids in my life – whatever their neurostatus may be.

So I think I’ve worked out how I feel about all this neuro talk. I value the right for people to self-identify under a name. But in the end, I don’t actually care about the label. I just care about the person.

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6 thoughts on “Neuro Talk

    • Exactly my point SJ! I initially felt really uncomfortable with all the autism terminology, but I guess you get used to these things after a while and they become second nature. But there’s a fine line between being politically correct and a self serving elitist. I hope I’m neither, but probably a bit of both haha!

  1. I think you bring up a great point when you address the fact that folks on what I might call the “higher functioning” end of the spectrum are able to advocate for themselves… But those who are non-verbal cannot. So there are some really great aspects of this movement in terms of embracing diversity, empowering folks with autism to advocate for themselves, etc. But I also think we cannot get so swept up in that end of the movement that we forget about the very real struggles of those who simply are not capable of speaking for themselves.

    You really hit the nail on the head when you said it’s all about the person, not about the label. Thanks for sharing your thoughts.

    • Thanks for your thoughts Sarah. Language and communication are such a powerful force that to not have that ability must be so incredibly frustrating. It’s so interesting to read some of the blogs from people who have been unable to communicate for a large portion of their lives, then to find their voice via technology. I just hope that communication will become easier for my boy, if no one understood what I was saying I would be a pretty frustrated and unhappy person.

  2. A well written and well thought out post, Rose. I prefer the person first language, but I also admit that it can sound more than a little clinical and elitist at times—depending on who’s using it and how it’s used. A lot of the time the word, autistic, really grates on my nerves, especially when it’s used by someone who’s “talking down” to someone or using the word to point out “someone else’s” limitations. (I hope that makes sense.) Everyone has their own comfort level with terminology.

    I agree completely with you that the complexity of lies in the ability—or non-ability—to communicate. I think it’s appropriate to adjust language/terminology based on that. Example: I think it does more harm to verbally describe someone who’s on the high functioning end as “autistic” than it does to do the same to someone who’s disability is pronounced and more obvious. (Again, I hope that makes sense—it’s getting late here and I’m a bit punchy.)

    • I agree George – person first is definitely where I’ve come from, and it’s where my natural inclination is – can you tell?. I do not want to label someone according to their disability, but it was interesting to read about the preferences as stated by the self advocates who say that being autistic is intrinsic. I think there’s two sides (at least) to this one. Historically the word ‘autistic’ had negative connotations and now that’s being changed by those who are claiming it as their own.
      As for getting punchy – funny how language can do that! Thanks so much for your thoughts.

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