A Realization

When I first created this website and was considering domain names, I wanted something that was easy to find. “My Child Has Autism” seemed an obvious choice. It did what it said on the tin. There was no ambiguity about it. Therefore I never assumed that there was anything wrong with the title of my page. But the more time I spent with the autistic community, the more I learned that many people place a great importance on how we refer to autism.

Interestingly, I’d made a similar mistake with a previous website. I’d referred to autism as ASD, which was the term that the medical profession used when diagnosing my child. However, upon talking with members of the autistic community, I learned that ASD can be considered a derogatory term, as the “D” stands for “disorder.” Nowadays the medical profession tends to use the term ASC or “Autism Spectrum Condition” when referring to autism.

So…”Autistic” or “Has Autism?”

My opinions started to change when I saw how autistic people themselves felt about these labels. Most do not see themselves as separate from their autism. It is a part of who they are. If we see a blind person, we do not say they “have blindness.” Likewise we wouldn’t say an English person “has English.” Many autistic people feel the same way and do not like autism do be described the same way as when we “have a cold” or “have flu.” A useful list of appropriate terms can be found on the National Autistic Society website.

The term “have autism” is called a person first reference. There are people who like this approach. They argue that an autism diagnosis doesn’t define a person. They do not wish to label that person. On the other hand, the term “autistic” is an identity first reference. A person who prefers to be called autistic is proud of their identity and who they are. They do not see it as something terrible that deserves to be pushed to the end of a sentence.

In a recent survey, autistic people were asked which term they preferred. Over half said that they preferred “autistic.” Eleven percent used the term “has autism.” The rest were happy to use either.

Moving Forward

The best thing to do if you are unsure is ASK. Ask the person which terms they prefer to use. Many prefer “on the spectrum” as a kind of middle ground. It should also be said that the terms “high functioning” and “low functioning” can be highly offensive to the autistic community, as can the term “Asperger’s.” It’s really important to use terms that people feel comfortable with and that don’t make them feel like secondary citizens. Also as a parent of a child with autism, I’ve learned that it’s not considered appropriate to call ourselves “autism moms” or “autism parents” unless we ourselves are autistic.

With these points in mind, I’ve decided to change the title of this website to “My Autistic Child” out of respect for the autistic community. Unfortunately I’m unable to change the URL at present. Let’s keep these conversations going and continue to show respect and recognition for the feelings of others,

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More Than Awareness Needed

Whilst autism “awareness” is fantastic, what is really needed is autism ACCEPTANCE. Imagine a society that didn’t stigmatise autistic people for being different. A place where differences were celebrated rather than maligned. Wouldn’t it be wonderful if our autistic children could go to school without fear of being bullied for talking or acting the way they do.

World Autism Day 2019 should serve to educate people about autism. Yes, wearing odd socks or a specific colour to school is a talking point, but it’s important to talk about WHY they are doing this. Even the school bully might turn up to school wearing blue to “light it up for autism,” but will it stop them from from bullying the autistic kid in class once the day is over? Let’s have the conversation. Let people know how they can help autistic members of society to feel included.

Ideas For Celebrating World Autism Day 2019

World Autism Day was first designated by the United Nations in 2007, as part of a human rights initiative. Different countries celebrate the day in many creative and unique ways.

“Onesie Wednesday” is one idea, created by the National Autistic Society in 2014. People are encouraged to wear a onesie to school or work to show that being different is ok and acceptable.

Bloggers may write a special post on this day and various social media channels light up with posts and videos about autism.

Fundraisers may include sponsored events or cake sales. Autism charities benefit greatly from the funds raised as it enables them to continue important outreach work in communities, supporting families.

So, however you choose to commemorate this day…

Happy World Autism Day 2019!

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