Terminology and special needs parenting

I was recently scrolling through Facebook and saw a post calling for recognition of the fact that we should refer to people with autism as “autistic” as opposed to saying they are “people who have autism”. There was also discussion about the term autism spectrum disorder (ASD) causing offence to those affected by it.

As a trained learning disability nurse, this confused me. I was taught to put the person first and the need second, for example I am a woman who has Multiple Sclerosis (MS), not an MS person. Our son is also a boy with spina bifida (I’ll not list the rest!), not a spina bifida patient. I don’t work anymore but I remember writing a lot of notes about people who “had autism” instead of saying an “autistic person”.

The original post really gave me food for thought.

To me, this is a return of language that would have been previously known as offensive to call someone autistic instead of rephrasing this to a person with autism. A mum commented and explained to me that her son has brown hair, blue eyes and autism. It wasn’t a condition to be cured, or something to be ashamed of. I read a lot of similar comments from parents and individuals themselves who all wished to be referred to as an autistic person. Surely this is their absolute right to ask people to refer to them in terminology they find acceptable?

It made me think about all the ways people discuss my son. Conversations usually start with “what’s wrong with his legs?” or “why is he in a wheelchair?”. The worst one for me is “can he walk?” because I often find people are so caught up with the idea that being unable to walk automatically means you are unable to be happy

That’s simply not true.

So many people who are able bodied are depressed while a lot of wheelchair users are not. This situation is obviously reversible, but the point is, I doubt walking is the main deciding factor in good mental health.

Historically, people would have used incredibly disrespectful language to describe people with downs syndrome for example, which I’m not even going to repeat because it’s just so appalling to me. There was also terminology to describe those with complex needs that reduced them to being almost subhuman.

Thankfully we have moved on and learnt from past mistakes to create a more inclusive society.

Having been surrounded by disability for many years now, I am really conscious to try and learn from other people what they want when being talked to or about. The only way we can move towards better inclusion as a society is by listening to the people living that life and learning from their experiences.