Someone on Twitter pulled me up on my terminology in one of my recent posts. The terminology I had used was “a child with Autism” and “a child with PDA”.
The person who pulled me up on it was of the opinion I should have used the terms “Autistic person” and “PDAer”. To be honest I have never heard the term PDAer, probably as I am fairly new to the concept of PDA. I also started wondering if someone with ADHD was therefore an ADHDer.
So, instead of taking offence, I have carried on the conversation, genuinely interested in people’s views, especially those of people who are actually Autistic.
I also started a poll on my Twitter and put the question to contacts on facebook.
I was interested to find the facebook community far more accepting of each other’s views and, although there were mixed opinions, the general consensus seemed to be that it is up to the individual. Literally a third of the people I spoke to on facebook referred to themselves or their children as Autistic, a third referred to themselves or their children as having Autism and a third truly didn’t mind what you called them.
On Twitter my results seem a bit different so far, although my poll is ongoing. Around 60% of the 50 people who have voted so far have said they prefer the term “autistic child”, the other votes are split between “it doesn’t matter” and “child with Autism”. I am aware however that I am asking both Autistic adults and parents of children with Autism to vote in the same poll.
The people who have spoken out on Twitter are generally Autistic themselves and prefer people to refer to them as Autistic, saying that Autism is an integral part of their being and not something they choose to live with or have to live with but can be cured. Probably the most striking example used was a diagram of two stick people. The first is holding a bag which is rainbow coloured. This person is labelled “person with Autism”. The second person had a rainbow coloured head and is labelled “Autistic person”.
There are also people, often less outspoken, who feel they would prefer not to be defined by a label at all.
It seems that a vast majority of parents with Autistic children feel they don’t want to label their children and define them by their Autism and would rather say their child “has Autism”. They feel there is more to their child and their personality than their Autism. There are others with the oposite opinion.
Also on the flip side, a lot of Autistic adults would rather be referred to as Autistic as they feel their Autism is a part of who they are. It is very important to take these views into account.
My conclusion from listening to all sides and opinions is that it is probably down to the individual person. The child or adult has the right to decide for themselves how they wish to be defined or not defined. A person has the right to be “an Autistic person” and equally “a person with Autism”. They also have as much right to ignore the label.
My son, at the moment and because of what he has been through, doesn’t like his Autism. He would prefer not to be referred to as an Autistic child and would rather his identity just be his name. As I don’t use my children’s names in my posts I tend to say he has Autism. This is his choice and I respect his right to choose.
In my writing I am sorry if I offend with my terminology. I however, can’t please everyone as opinions are so very mixed. I think the best way forward may be to use all terms equally but I still feel some with very strong views may take offence. My aim however is not to use the right words so much as to raise awareness in order to perhaps make the world and school system an easier place to be for ALL people! That, I hope, is something I might achieve and something I hope that, even if I don’t use the “right” language, you might join me with.
Thankyou for taking the time to read this post. If you would like to read more then feel free to follow my blog or like my Facebook page which I keep up to date with new posts as they are written. You can also find me on Twitter @KidsOnTour1
10 thoughts on “The language we use when talking about Autism”
When I was first diagnosed (4 years ago) I described myself as a person with Asperger’s but I soon became uncomfortable with this and now refer to myself as being autistic.
I think I would describe a group of people as an ‘autistic community’ and an individual as however they describe themselves. Don’t worry about it too much. You have never offended me 🙂 It’s all a journey and your thoughts on your blog are valuable ❤
Thankyou! Im glad I havent offended you and thankyou for your support 😊
I’ve always been told that you should say someone *has* instead of someone *is* as the latter seems to imply the person is defined by it. However I’m increasingly aware that some people would prefer that. As a mum with a small child who is yet to receive an official diagnosis, I prefer to say that he has ‘non-neurotypical tendencies’ and that’s how I feel comfortable. I certainly wouldn’t take kindly to someone correcting me – so well done you for not taking offence. I think it’s each to their own. If when my son is older he would rather describe himself as autistic or an autist then I’ll follow his lead. But as he’s currently unable to express himself in that way then I can only go off how I feel comfortable discussing it.
As a parent of a son with autism, I found this post interesting. The way I see it is that my son has autism, and that autism makes him who he is, quirks and all. I don’t see it as negative or positive. It’s a fact. Saying that though I don’t find what you wrote in the least bit offensive, I’d rather people were being made aware of the condition than being too scared to talk about it for fear of upsetting people by using the wrong terminology.
I don’t see any need for you to apologize. Your experience with autism is yours.
As an autistic and mom to an autistic daughter, my opinion is that how we refer to ourselves is our choice. And when I say we I mean every human soul. I would *prefer* we are called Autistic. But the only time my hackles really rise is when someone tries to correct me and tell me I should use specific terminology over what I choose for myself.
That is so very true! Every human has the right to decide how they want to be referred to and noone has the right to take that away by telling them the terminology they should be using.
I have autism, I consider myself Autistic, my eldest prefers to be unlabelled, two of the others claim to be autistic. The only time I get offended by different ways people describe autistic is when busy bodies start demanding that I use their arbitrarily defined Correct words. Jargon has always been used to separate a group from the general population, consciously or subconsciously, forcing others to use your jargon immediately disadvantages them by restricting their communication and splitting their concentration, it is arrogant and abusive. Your context is so respectful that I believe you should be given the benefit of the doubt even if you used a genuinely offensive words. And don’t get me started on the damage done to children by parents who are obsessed with the cure model of therapy. I love everything you write.
Thank you 😀