The language of disability can be difficult. Have you ever worried about how to refer to someone with one? Due to the anxiety that you might offend, have you, perhaps, avoided talking about it at all? I know I have.
In recent post of mine ‘An apology to my autistic students’ , was received very well. In fact, it has been read by over 40,000 people and shared over 10,000 times on social media. To everyone who read and shared: thank you. You are making the world my son will grow up in just a little more aware and, for that, I owe you my gratitude.
But with such a large audience, inevitably comes criticism. Since my post was shared on so many platforms, I have read hundreds and hundreds of comments about the piece – on the blog, facebook and twitter. The vast majority of it was positive and asking to share my words.
A few people, however, commented on my decision to call my son ‘autistic’, rather than describing him as ‘having autism’. To describe a child as autistic, they said, is surely to define him as such. It was an interesting and relevant point to pick out about that piece of writing. It is a debate that has been going on within the autistic community for some time. Some say they prefer the phrase ‘person with autism’ because it places the person first. Others say that autism is an inherent part of who they are and are happy to use the adjective. I can understand both perspectives.
As a teacher of English it is my job to analyse the layers of meaning in language, the connotations and associations that words can bring. My Year 11s would no doubt say that I have a tendency to ‘read too much’ into words.
If you type ‘autism definition’ into Google, this is what comes up:
A cold and scientific description that focuses on the can’t, the difficulty. It leaves out so much, as, I suppose, dictionary definitions must do.
When I was writing the article above, I thought long and hard about how to refer to my students, my son, for fear of offending anyone –
‘…has autism.’ The words stare at me from the computer screen, cursor blinking accusingly. Are those the words I want to use? Backspace…. autistic. Still blinking. I admit, I don’t feel happy describing my son as either of those things. He is my boy – clumsy, loving, funny. He is a skipping, singing whirlwind of wide blue eyes and quivering bottom lips that make you want to scoop him up and hold him forever. He is quiet, cautious, sensitive. He kicks his legs and shouts with glee when he sees buses. There are a million beautiful words that I want to put next to his name, next to that word, son.
But he is autistic. He does have autism. Maybe the problem is not the words at all. Maybe it is my attitude to them. Maybe it is society’s attitude to them. And when you consider the stark, clinical definition, and the fact that for many, that is as far as their understanding of autism will go, maybe my discomfort becomes clearer.
It is not the words that we use to describe autism, to describe disability, that are the problem; it is the barriers that society creates. If a person can’t do something in a world that is set up for those that can – well then that sets them apart. Makes them different. Turns them into a failure in a world full of successes. And whatever word you use to describe their difference, you are setting them up to be separate, other, less.
But we only see it as a disability, as failure to do something because it is ingrained in the world around us – not because that is what it is. It is the understanding and attitude makes the difference, not the vocabulary.
I think, in the end, I decided to use autistic more frequently in the article. It is an adjective like the millions of wonderful adjectives I could use to describe my son. And I am an English teacher; I like adjectives. Words have a prodigious power and we cannot take that lightly. We must be mindful of the ways others would like us to describe them. But far more important than words are the intentions and attitudes behind them.
If I were to sum up my son in a dictionary entry, a short phrase, would autism form part of that definition? Probably not. But it is an inherent part of him; it is an inescapable fact that it influences his thoughts and actions, who he is. The root of the word ‘autism’ is after all, auto, meaning self.
You can change the words – words for disabilities, diseases, disorders, syndromes. Words related to race, gender, religion. Words that describe, words that name, words that define and categorise. But until the world reflects the meanings that we want those words to have, until we are motivated by acceptance, understanding, and love – then semantics will always be secondary.
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.” Martin Luther King, Jr.
I have debated with myself about this too and decided that I wanted to focus on all the other adjectives that described my son and not only that he is autistic. I would find myself excusing things, ‘Oh, don’t worryabout the noise, it’s because he’s autistic’, whereas now I will say ‘Don’t worry about the noises, he makes those because he’s excited, it’s all part of his autism’. It feels better for me, but you are right. It is semantics a lot of the time. I just don’t want the autism to be his only defining characteristic.
Thanks for continuing the conversation that is so important for so many of us x
My son is waiting for an assessment to see if he is on the spectrum. He has a rare chromosome deletion and he certainly has autistic traits. That much has been confirmed. When I have shared my blog posts about him on social media I have had similar comments to you. It’s so hard trying to wrote a piece about this while trying g not to offend others. Personally for me I prefer to say “my son has autism” rather than “my son is autistic” because of the reason you mentioned but generally over all neither terms bother me. I wouldn’t be upset or offended if people referred to my son as autistic but I do understand why some people are. I guess it’s a personal preference, but it does make it difficult when there is that divide.
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I think that’s a big problem. It’s like everything is labelled. Although to be fair, it’s also great that autism and all other conditions are getting the awareness it deserves. On the one hand, you say one thing, do one thing and it’s attacked/criticised. And it keeps changing too, a term that was once accepted before is deemed inappropriate today. People get confused are confused. What you wrote sums it all actually “until the world reflects the meanings that we want those words to have, until we are motivated by acceptance, understanding, and love – then semantics will always be secondary” Great post!
I didn’t realise that there was this debate with the description, I can understand both sides but I do agree that there is a cultural attitude towards autism that needs to be addressed x
I was discussing this with someone recently with regards to another condition and I didn’t even think about it relating to me and my son. I always say ‘has autism’ but I think that’s because that’s what I’ve heard, I would have no problem with someone calling him autistic because it’s a very important part of his identity, many elements of which make him uniquely lovable and something I would like him to be proud of; no more or less than being British, black, a son and a raving Thomas the Tank Engine fan.
I read the previous article and didn’t take away anything from your use of autistic over has autism. Rather I sensed the pride you have for your son and that you take him as he is. I agree that it’s an adjective like any other descriptive. It is a part of who he is but why view it as a negative? To me it’s like when we start arguing over terms like ‘manhole cover’ and whether it should be called a person hole cover. In my mind, there’s bigger fish to fry.
I have had this problem as well. As a therapist who treats Autism, I have been attacked for saying someone is Autistic, or someone has Autism. I have had people tell me I have no right treating Autism as this means it is something that needs to be changed. Autism, in itself, has many negatives that can limit development and make life more difficult. It can have positives as well, and I encourage those. In the end, if someone is offended by what I say, then that is their problem. My goal is to help people, and sometimes, being overly sensitive to a word draws attention away from what is really important, making life better.
Thanks for commenting. I am sorry you have had some negative responses to treating autism. Obviously, life can be very difficult for those on the spectrum and if ‘treating’ autism is helping them to function and be happier in a world made for neurotypical people then ‘treatment’ isn’t a bad thing. My son will have speech therapy and occupational therapy etc (when the referrals finally come through! 5 months wait so far). Thanks for commenting.
Firstly congratulations on your first article to have it shared so much is a real achievement and is spreading awareness on a large scale. I must admit I don’t like labels in general and there are a lot of negatives attached to Autism, which is wrong. Hopefully over time these will be lost and people can focus on the positives of the individual children just like you have here x
Beautifully written, I think the point is that how a word is interpreted comes more from the person reading and there associations with that word far less than the word you actually choose. Different things have different meanings to people x
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My little foster sister has Williams and we think she has autism as well because there are very specific Austistic traits that she has and one of my best friends has a form of autism called Aspergers. It is more common place now than ever but I am sorry to hear about some of the negative comments. I can understand both perspectives and that is what people should do themselves and not judge so much.
This is so good! While I do not have Classic Autism, I do have Asperger’s (or what used to be called that) and think that you are such an inspiration for me. Thank you very much.
Thank you so much 🙂
I say my son has Autism but I have also used autistic. I agree with you that it is a societal thing and therefore, I think it’s up to the parent’s personal preference what they use but either way, it shouldn’t be a shameful thing. You made another interesting point though about the definition by Google. Google describes it as a mental condition, which I guess it is but my old Psychology professors always referred to it as a neurological disorder and that’s what my son’s teachers and diagnostician refer to it as as well. Maybe it’s both? What has been your understanding of it? Maybe at the end of the day it doesn’t really matter. My son is who he is and I love him for all of him:-)
I am not sure but I have heard autism grouped in mental illness before. I don’t think that is an accurate way to describe it and will give people inaccurate ideas about it. It all comes down to communication and understanding, I suppose. The more we all understand things about one another, the more the world will be an accepting place. Thanks for commenting and your kind words! xx
A thought provoking post. It can’t be difficult, I am sure. I don’t know what I would say in the same situation either.
This is a beautiful & heartfelt post. I can imagine how difficult it is to describe your child as being autistic when he is clearly has so much more to him than that. Congrats on your post getting so many views & shares. It’s wonderful that you are raising awareness! Thanks so much for sharing with #bloggerclubuk x
Thank you 😊
My son has Aspergers and life can be full of some many challenges. Well done on raising awareness. More people need to understand what life is really like
I am an autistic person not a person with autism.
I must admit I do sway towards that phrasing. I know many people prefer the phrasing with autism though. Thanks for commenting.
The community does seem divided on the subject, quite aggressivly sometimes. I guess it is how you interpret the semantics and if you identify strongly with one style or another. As a late diagnosed adult I do not favour one over the other (and I am sure there are more variations!), and am often dismayed at the vicious infighting in the community. I have read your posts with interest and appreciation, and hope you will continue with them.
I like your perspective too Danielle and interested in how it was perceived by other people who don’t agree. Why can’t people just be respectful and say they don’t agree? Always amazed as some of the damning comments people make.
I’ve read debates on this point Danielle and TBH I don’t care. Like you said it is people’s response to the disability that concerns me, we are a long way from acceptance of difference, unfortunately! Interesting enough in the bigger ones tag, I asked my boys to describe themselves in 3 words. My big lad choose; Kind, autistic and sometimes funny. #Spectrumsunday
#SpectrumSunday – my comments ^^^ still stand 🙂
I have to admit that until I entered the on line world of blogging this was not something I had given a tremendous amount of thought to. It is however something I have become more aware of in recent months since starting “A blog about raising My Austistic Son”. I certainly don’t think autism defines who my son is but it is such an integral part of his make up that for us it’s been natural to use “autistic” rather than “has autism” (although I think we do both). Your post has prompted us to have a chat about it and, thankfully for me, he’s really comfortable with being described as an autistic person. (not going to have to rename my blog quite yet!) I guess putting autistic before the person is only a problem if the word autistic is viewed in a wholly negative light. My son knows that being autistic has given him particular strengths as well as weaknesses. Thanks for writing this. #spectrumsunday
This is such a thought-provoking post, Danielle. It challenges me to consider how I perceive those I know who ‘have autism or who are autistic’. But in the end, you help give voice to the tangles of thoughts I have in my own head…Your last paragraph is insightful and clear…Semantics are indeed secondary. Thanks for sharing and thanks for hosting #spectrumsunday
These is a really thought provoking post, I consider myself as an autistic person I suppose. X #SpectrumSunday
I read this a few days ago 🙂 Another wonderful and thought provoking post, I find myself wondering if I’m using terminology that the person I’m talking to finds acceptable, I get my ASD and Autistic and Autism all mixed up and then there’s SPD which I have to explain to most people I meet! I also get my SEN or Additional needs? And is it SENCO now or SENDCo!? I get myself so confused 🙂
It’s difficult. It feels like no matter how careful you are and how little you want to offend there will always be people who are upset by the language you use.
As someone who almost certainly is autistic, I use a mix of ‘autistic’ (as is obvious from the first part of this sentence), ‘with autism’, and ‘on the spectrum’. I don’t know if that means I’m more or less likely to offend!
Part of me thinks we should stop getting so bogged down by the language and think more about the sentiment…but then I do cringe a little at ‘high functioning’ and various other terms I come across when reading about autism (which I used to use, to be fair) so am I any better? I don’t know.
I loved your ‘An apology to my autistic students’ post, by the way.
#SpectrumSunday