Tuesday 9 December 2014

Has Autism or Is Autistic, which would you choose?

I know it's nearly Christmas and we're all busy, so I don't want to get too heavy on you, but... I have a question.
Picture was taken in summer this year; I don't think it answers the question but I love this as you can see how truly happy she was!
Would you say Sasha has autism? Or would you say she is autistic? 

This year I've been helping to run some Early Support workshops for parents of children with disabilities (note I'm not using the phrase disabled children). At one of these sessions, I was challenged on my choice of language. Initially I felt slightly miffed that someone had picked me up on the words I had used, and I didn't believe I was in the wrong.

I can see now though that I had become lazy with my use of language; I had been referring to our eldest girl Tamsin as our “normal” (shown in that way where you use your fingers as the exaggerated question marks) child.

On the one hand, I’m almost ashamed to admit that, but on the other, in my defence, it seemed as if saying 'normal', along with the finger actions, had become part of a colloquial language, the sort of language that other parents of children with special needs would understand. Those parents would also mostly understand the term 'neurotypical' (typical brain) to mean the same. Personally I wouldn't use neurotypical in general speech, as it is not a common term. It feels quite 'medical' and unlikely to be known by parents of children without disabilities. 

I’ve been asking myself, what does “normal” mean? My view is that it doesn’t mean the opposite of abnormal. Normal to me describes a group of people who generally follow the same rules in life, those who can fit in with the crowd when they see fit, and not deviate too much from those unspoken social rules. Of course it absolutely isn't right to say that our youngest Sasha is ‘not normal’, but it is true that she is different from the majority. 

Of course there are plenty who don’t consider themselves to be part of this ‘majority’ group, and will no doubt say whilst laughing that they are not “normal”. In reality those people are just running on the outskirts of the main pack. The real issue is knowing where that blurred line right on the outer edges starts and stops. I think most people could say truthfully whether they or their children fall inside or outside of that main group? We may all be on a spectrum of sorts, and lots of us may show some traits which have links with autism (anxiety, lack of sociability, some sensory issues maybe), but I don’t think we can say we are all somewhere on the autistic spectrum.

Anyhow, I digress. The discussion here is over language and what is or isn’t acceptable. Times change. Most of you would be horrified I’m sure, if you thought that someone with a learning disability could still be called a retard in this day and age. Yet it still happens. Sometimes that term is used through ignorance, but sometimes sadly also with ill intent. It's wrong either way, and we should call people out if they use it.

It was suggested by another mum of a child with a disability that I should use the term ‘typically developing’ for my eldest child. A bit of a mouthful maybe, but much better than my clumsy 'normal'. This mum was also very insistent on the idea that our children should be called ‘children with disabilities’ and not ‘disabled children’. It’s a subtle difference, called 'person-first' language. Our children have disabilities, yes, but they are also happy children with their own individual personalities. Their disabilities do not define them.

I wonder constantly whether I should say Sasha HAS autism, or do I say Sasha IS autistic? Does it really matter? Apparently it does matter, a lot, to parents and people within the autistic community. The lovely Jess who blogs over at Diary of a Mom has written a brilliant post about this, and I love her reasoning. In fact I love her whole blog as she has a girl (with autism, or autistic) older than Sasha and I feel like I can learn a lot from her experiences. I'll openly admit I don't write as eloquently as her though, and I do tend to go off at a tangent, so I'll apologise for that now!

I agree that saying Sasha 'has' autism almost makes it sound like she has something bad. It might sound as if she has caught a disease. Does saying she 'is' autistic on the other hand, give the right impression that the autism was there from birth, and that it is not going away? Does it though also infer that that's all she is, autistic and nothing else? I think not. I think you can be autistic and also be musical, or autistic and good at sports, or autistic and confident, sociable, friendly... do you see where I am going with this?!

I struggle to say that Sasha is disabled – that sounds so serious and as if there are other implications. To be honest though, she is, and there are. Autism is a hidden disability. It's not something to be scared of, or to hide away. In society today, Sasha is classed as disabled. 

I wasn't intentionally linking "normal" with 'not disabled', but I can see that by default I was doing so. I'm sorry for any hurt caused. I'm often putting my foot in it, and I frequently struggle to get my words out in the right way, but I do hope no-one holds it against me. 

In all honesty, I don't mind whether people describe Sasha as autistic or say that she has autism. As long as it is said without malice, and with some understanding, I'm happy with either; I'd rather folks talked about it than didn't mention it at all because they are too scared of upsetting me or others with disabilities. 

So I'm interested to know, how do you feel? Do you always know the right language to use? Do you believe in person-first language? Are you affronted by others' choice of words? Or are you simply not sure and scared of getting it wrong?