I like to follow social media accounts that belong to adults with Autism Spectrum Disorder (otherwise known as ASD). It helps me get a little bit of perspective into what Nolan lives with every day, and in general helps me understand things like ableism and other issues that adults living with a diverse neurology face in their everyday lives.
But several months ago, I read something on one of these accounts that has been stuck in my brain ever since. I don’t remember which one now-- I think it was somewhere in the Instagram Universe, but my brain doesn’t work well enough to keep that kind of information around in the long term... The post basically said, “There’s no such thing as an autism parent-- only an autistic parent.” I had a moment of, “Wait, what?” So I started reading the comments to get a better idea of the discussion.
The basic argument was that while you can call yourself an autistic parent if you live with ASD and are also a parent, being a parent to a child with ASD only makes you a parent. The difference in this, it seems, comes from who the diagnosis belongs to. The discussion went on to say that calling yourself an autism mom (the bulk of the emotion in this one was directed toward the moms here) was a ploy to gain attention or set themselves up as a martyr.
A few parents had chimed in to defend themselves… “But I love my child and I advocate for them, and this is not why I’m using this phrase.” The response boiled down to, “Good-- we need good parents. But the reasoning behind calling yourself an autism mom doesn’t matter. You’re a parent whether your child has ASD or not. There is no difference and you shouldn’t be using it to call attention to yourself.”
I think that’s the piece that is stuck in my craw.
“There’s no difference whether your child has autism or not-- you’re just a parent either way.”
Respectfully, I understand what you’re saying. Parents should love their children equally whether they live with special needs or not. And it shouldn’t matter if my child has autism or not. But you know what? It does.
It matters if my child has autism.
It doesn’t make him any less important than anyone else’s child. It doesn’t make him any more important than anyone else’s child. But it does give him a different set of obstacles to navigate in this world.
And as his mom, it makes my life easier if I can give myself that label. Why? It helps the people around me understand me better.
For one thing, it helps me identify my tribe. I firmly believe that even though our kids can be entirely different, no one understands what it’s like to raise a kiddo with ASD like another mom of a kiddo with ASD. Let's face it, I collect autism parents like some women collect shoes-- I like to keep my feeds full of friends whose parenting journeys I can relate to (though not exclusively-- other friends and cats keep me balanced).
More importantly, though, it helps other people know that we’re going to relate to each other differently than typical parents.
For example, a coworker and I have kids in the same grade at the same school. Our kids don’t know the same kids. They don’t participate in the same activities. And they don’t have the same interests. If we’re discussing plans for the weekend, chances are they’ll be dropping off teenagers at the skate park or watching baseball games. Us? We’ll be trying to limit the YouTube for Kids time and trying to keep up with his ever-changing sensory requests. They might be dealing with the complexities of the teenage years including peer pressure, self-worth and interpersonal relationships. We’re just trying to get him to use the toilet without prompting and not leave the refrigerator door open when he brings us the loaf of bread and whatever condiment strikes his fancy at that moment in time.
Don't even get me started on the differences of our household items... Even our bike rides don't look like most families.
I guess what I’m trying to say is that it’s a different skill set. Just like there are mechanics and there are body shops. Sure I can call them both car places, but they operate very differently. I’m not going to expect a body shop to overhaul my engine-- just like I’m not going to ask a parent of a neurotypical kid whether their child seeks out sensory input or avoids it.
It’s just different.
So I mean absolutely no disrespect to anyone with ASD. But please let us have this phrase. Our goal isn’t to take the attention away from our kids (that’s not how parents work-- we’re going to brag on these kiddos and be proud of them every chance we get) or use it to seek attention.
We just want to be understood-- just like our kids.