Before you become an autism parent, you have no idea how much words matter. Learning and using correct terminology is so important, not just for parents but for your extended family and friends as well. A throwaway comment can sting and stay with you for a lot longer than anyone may realise. But it can also be exhausting to constantly correct someone else’s expressions. What we do in our family, is model correct terminology. We don’t correct anyone while they are speaking unless they are being offensive. We just make sure to respond using autism-friendly language.
For example, the word we brush up against most is “normal”. Close friends and family will unthinkingly compare Aidan to “normal kids”. This is not meant unkindly of course, but it is used frequently by people who don’t have a bank of more appropriate terminology to draw from. It’s a simple case of gentle correction in order to advocate for our neurodivergent kiddos and educate the people close to them. It needn’t be tense or awkward if done with a smile and a light touch. Whenever this particular word comes up, I acknowledge the person’s thought or question first, and reply using the term, “neurotypical” where they’ve used the word “normal”. For me personally, having people I love ask questions and want to learn more about autism is a gift. The alternative would be very sad! So I always see what people ask me as an expression of their care and a potential teaching opportunity.
When Aidan was first indicated for autism at 18 months old, I began to join autism Facebook groups. I wanted to learn as much as possible as quickly as possible, to be able to be the most supportive parent I could be. I always encourage other people to do as much reading as possible. Because the truth is, no matter where you are on your journey to acceptance, your child will continue to struggle without the additional support they critically need. Extensive reading and learning, advice from specialists, and chatting to other autism parents, will ensure you can hold space for your little one as needed. So, desperate for answers on a lot of different topics and hoping to learn more about what to expect going forwards, I began to participate in online group discussions.
The first thing I learned is that most of the advancements in autism research seemed to be happening overseas. Countries like the USA, benefit a lot from university research, state sponsored early intervention therapies, and generally far more societal autism awareness and acceptance. The next thing I learned is that even within the autism community, there are some extremely touchy subjects! And correct terminology is one.
Though I find myself drawn to certain terms more than others, I feel that it’s very important to acknowledge and respect what autistic individuals are most comfortable with. But because autism is a spectrum, even autistic people have differing opinions on this! Some, on the higher functioning end of the spectrum, would call autism a “gift” or “superpower”. They might describe themselves as being “differently abled, not disabled”. But on the lower functioning end of the spectrum, you’ll find individuals who refer to autism as being “profoundly impacting” and a “disability”. Aidan has been diagnosed as having moderate to severe autism, and because his autism regularly hijacks his executive functioning and robs him of many joys, you will see that I refer to his autism as a disability on my blog.
Even the “functional” labels are highly controversial. At present, it is widely considered distasteful to refer to an individual as “higher” or “lower” functioning. It is also considered inappropriate to label a person’s place on the spectrum with any of the three “levels”. Over the course of three years, I’ve seen what is and isn’t considered acceptable change many times. And so I encourage other autism parents to keep abreast of correct terminology as far as possible, but to ultimately use what you feel most comfortable with.
I encourage my readers to read Lydia Brown’s article on this subject, to better understand the complexity of using correct terminology as an autism parent or autistic person:
https://autisticadvocacy.org/about-asan/identity-first-language/
And for more on why our words matter, please watch this reel by Kate Swenson, who is the mom of a sweet teen named Cooper:
https://www.facebook.com/share/r/z1XrJbXthq8BKLFB/?mibextid=UalRPS
