I’m very privileged to know a number of other mummas of kids with ASD (Autism Spectrum Disorder), at various stages of their journey.
Some have kids who were diagnosed 20+ years ago while others are currently in the process of receiving a diagnosis, and of course others still spread out along that continuum.
If you do have a child with ASD it really can be very helpful to have a circle of friends who truly understand what it is that your child, you, and your family experience. People who just “get it”.
Recently during a dinner where a number of us were together some questions arose around how much we share about our kids and the label.
So, when I answered, I let them know that I am VERY open about my daughter having ASD.
And here’s why… well actually the two main reasons why…
I don’t want her to feel any shame at all around having autism. Because there is nothing for her to be ashamed of. I want her to have about as much emotional reaction to hearing that she has autism as I would if she were to hear that she has brown eyes.
I feel, that if I don’t acknowledge it openly just as I would say that my son has asthma, or anaphylaxis etc, it sends a subliminal message that it’s a secret; something that we don’t tell people because it’s “wrong” in some way.
When my daughter was first diagnosed I wrote An Open Letter to My Daughter, Recently Diagnosed with ASD. I definitely had some concerns around people using the label to define her, or somehow expect less of her.
At the same time, it makes up part of her experience and I think it’s important to acknowledge that. By being so open about her autism, I’m hoping to remove the stigma, encourage people to ask questions and in general see that it is just an aspect of her human experience, it doesn’t fully encapsulate who she is at her core.
Which takes me on to another point I discussed in detail with these friends at dinner.
I ALWAYS use person first language.
What that means is that my daughter HAS autism. I don’t say she IS autistic.
Because, while autistic is definitely a label that could be used for her, it doesn’t describe all of who she is. She has so many other labels for who she is:
In saying this, I also know that there are plenty of adults out there on the spectrum that prefer to be called autistic as they identify that way. And that’s a choice I respect, and use anytime I hear someone refer to themselves that way.
Additionally, I feel like at times it can help people better understand her behaviour.
And just to illustrate, let me tell you about a recent trip to the supermarket.
Now, for my daughter, the supermarket can be a very triggering place. There is a lot of overwhelming sensory input for her, and we are still working on her regulation.
On this particular day she did really well and we got through the shopping without feeling completely overwhelmed, but I was running a little behind schedule so I decided to use the self-checkout area.
As I was busy scanning items and trying to keep the kids engaged, I noticed that Miss 4 had already found something to engage her…. the grocery store staff member who was overseeing the self-checkout area.
When I looked over to my daughter I could see her very clearly mimicking this staff members every move, almost pressed up against her leg.
This particular staff member was walking around the area, and had her hands clasped behind her back.
Miss 4, was patrolling alongside her, with her hands also clasped behind her back.
The staff member did not look too happy to have a mini-me, and I was starting to overhear some grumbling from other shoppers with snippets like “disrespectful” and “parents should”.
So, in a voice loud enough for everyone to hear I said: “Lovebug, remember how we talked about that not everyone likes their moves to be copied, and that we also need to give people their personal space?”
“Hmmm,” she responded and kept copying this staff member, still practically attached to her leg.
I could see the staff member showing signs of frustration, particularly when she looked over at me or down at my daughter.
So, I went over to the staff member.
“I just wanted to let you know that my daughter is trying to connect with you, and that’s why she is copying you the way she is. She has Autism and we’re still working on our social skills. She obviously sees something in you that she has connected with, and as she doesn’t approach people in the same way that you or I might, this is her way of trying to establish a rapport with you and let you know that she wants to be your friend.”
“Yeah, friend, friend!” my daughter replied animatedly.
“Aaaah!” (You could literally see the lightbulb click for her)
And all of a sudden I heard a lot less of the “disrespectful” and “parents should” comments, and I could literally see people looking at my daughter with new eyes.
So if you are currently going through the diagnosis process, or have a child who has recently been diagnosed with ASD I urge you to think about how helpful it can be to be open about it.
And believe me, I get that there can be cultural considerations, personal preferences of how much you share etc. But think about what message it sends to your child if it feels like a secret.
And the more that it is spoken openly about with no embarrassment or apology, the sooner any stigma can be lifted and we can embrace neurodiversity.