The A Word

I’ll never forget the day that someone used the phrase “The A Word” when discussing my daughter.

“The A Word” as in Autism.

I still wonder what it was that made them feel unable to speak the word Autism out loud … Is it taboo? Something to be hide? Or did they just feel awkward?

I didn’t know what to think at the time, but this is an open letter to anyone contemplating using this phrase – please don’t – and I’ll explain why. Autism doesn’t define my daughter, it is a very small part of her.  But it also isn’t something we need to shy away from. I want her to grow up feeling proud of every part of who she is, because I am.

My daughter has taught me so much, about myself, society, and life in general.  And I have no doubt she will continue to do so. We think, as parents, that we are the teachers, but I know that in my case, she is mine.

I’m ashamed to say that before I had encountered it myself, I had never really understood what Autism was. It was something that, in my naïve and ignorant world, I thought only happened to “other people”. I never imagined it would be something that I would experience in my own family.

But now I understand it, I actually embrace it, and most importantly I understand HER. I wish that the world was more open and aware of Autism, and in fact all other “invisible disabilities”. So that people are able to be more receptive, understanding, flexible and accepting. But if we aren’t prepared to speak about it, if we aren’t prepared to acknowledge it, if we feel it is something to hide, then all of these people will continue to suffer.

Autism is not a disability, in my opinion.  Rather, the world, and society that WE have created is disabling for those with Autism Spectrum Disorder (ASD). Our norms, rules, structures and expectations make it challenging for people with ASD to fully integrate, feel secure and fit in. My daughter, for example, is clearly very intelligent, however, she is unable to sit and listen in what would be considered a “normal” way. She needs to move to be able to process information. So how are our standard classrooms and education systems accommodating to her needs as an individual? If she can’t listen (yet) in a way that is considered “normal” or “acceptable”, does that mean she can’t learn at all?

I know that thanks to successful campaigns, increased awareness and improved understanding around Autism, that real progress is being made. Just today, I saw an incredibly inspiring video about a school that built a special sensory room that allows children with additional support needs to meet their sensory and physical input requirements, so that they can learn more effectively. For those interested you can watch the video here.

It is so good to see schools recognising (and more importantly accommodating) these needs. But there is no denying that in general there is a long way to go. At the same time, we need to try harder to assume that people with autism are competent, rather than deficient, and find ways to join them in their world before asking them to be in ours. This has been the biggest lesson for me on our journey so far.

People can’t “see” Autism, and too frequently they see a naughty child. They can’t see that my daughter doesn’t yet understand the social rules and norms that we all take for granted. They also can’t see that she can’t yet communicate her needs so perceive her frustration to be her acting out.  So often, I see people assume the worst about my daughter until I have the opportunity to explain what she is experiencing. Their recognition and understanding is only after she has already been reprimanded and judged. We can do more, surely. Let’s help these individuals to feel like they belong.

How do we do that? We talk about it. We share our experiences, and we honour these individuals. If we are too afraid to speak about this – nothing will change. How can people accept our children if we can’t be open about it ourselves?

Finally, I’d like to say something to my daughter. Yes, you have received an Autism Spectrum Disorder diagnosis, but that does NOT define you, and there is absolutely NO shame in it. Hold your head high, be true to yourself and I’ll stand tall right next to you.

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