An autism specialist and I were talking about the prevalent idea that if you love someone who is autistic (especially if you’re a parent of an autistic), then you’ve earned some kind of award.
You’re a superhero.
You’re a super-person.
There are ads, tshirts, memes, mugs, and support groups that rally behind parents, offering extra support and love for raising a neurodivergent child.
At the same time, these parents are reminded of harrowing divorce rates of those with “special needs” kids.
The message is: Special needs kids have special, superhero parents and teams of loved ones.
You might read the above and think, “That’s great! Those parents are special. They are amazing!”
I understand that parenting a disabled or divergent child poses challenges. Clinics, physicians, therapists, support groups become familiar faces instead of, perhaps, playdates and mama groups.
These parents are parenting in a different way from their peers.
And yet, at least from my point of view, the rhetoric of superhero parents is damaging.
It harms and threatens conversations about acceptance and neurodiversity … because those conversations aren’t even considered most of the time. Looking at autism, or any other disability, as something that has incredible strengths and challenges is not the way it’s presented to parents at time of diagnosis. Instead, parents are handed the un-gift of fear, seeming isolation … a message that says: brace yourself. You’re in for the ride of your life. It’s going to be rough.
They are confused. Afraid. And feel alone. So … when they are surviving and not divorcing, they become superheros.
I don’t believe it has to be that way. It’s not fair to the parents and sets the kids up for feeling like they let their parents down. Or in the very least, tired them out.
<<<>>>
I’m actually autistic. So is my daughter.
When I first attended support groups for parents of autistic children, I didn’t know I was on the spectrum.
While I felt a lot of intensity around parenting and knew that parenting my daughter was very different—because she’s different—I wasn’t entirely comfortable with some of the conversations I heard. Conversations that held autism in a less-than-positive light.
Later, as I was in the process of getting personally tested for autism, I began attending a different support group — one for parents and carers of special needs children.
I was confronted with my internalized ableism and felt really, really uncomfortable.
Like: really, really uncomfortable.
<<Pause>>
I’m going to pause for just a moment because I wrote a term above that may have thrown you.
Internalized abelism.
You might be wondering what I’m talking about. Perhaps your eyes glazed over and you decided you don’t want to read any more.
Stay with me. I’ll explain further below…
<<Unpause>>
So, I was at support groups for parents and carers of special needs children and felt uncomfortable.
Why?
Because I experienced an inside look into how some people—including some parents—view having an autistic child.
It wasn’t all fairies and unicorns, that’s for sure.
It felt strange to hear others’ view about loving someone on the spectrum. The “toll” it takes. How being with someone who is autistic can be just “too much” at times.
And here’s the sad thing. If I had not been in the process of getting diagnosed/receiving my diagnosis, then a lot of the messages probably would’ve not registered as harmful.
I’m ashamed, embarrassed, even to admit that I may have thought:
“Well, that parent must have a really difficult kid. I’m lucky. My daughter doesn’t have as severe of issues as their child. I probably shouldn’t be in this support group.”
That is called ableism. It’s judging ability as better than/worse than. It’s a thought pattern that is in common with every “ism” out there. It creates polarities—a linear view that separates and divides types of people.
It wasn’t until I was facing a possible diagnosis that I heard these conversations differently.
I imagined being a child and overhearing my parents talk about me that way. I didn’t like it. I didn’t feel good. At all!
I kept thinking, “If my parents knew I was autistic as a kid, went to a support group to discuss how hard it was to “deal” with me, and then were told they were superheroes for doing so, I would’ve felt horrible about myself.”
It would’ve validated my already held belief that there was something inherently wrong with me simply because I was different and didn’t feel like I quite fit in … even in my family.
Sadly, it took me realizing I was probably on the spectrum to see autism conversations from a different perspective. I had never heard of the neurodiversity movement. I didn’t know there were autistic self advocates working to have their voices heard.
I hadn’t heard their voices. I only thought about autism and kids. Not autistic adults … except maybe Bill Gates.
And even then, I didn’t think of him as autistic. I thought of him has “having” Asperger’s. Asperger’s was a better version, a smarter version, a higher functioning and acceptable version of autism. It was more comfortable.
I certainly didn’t stop to think that seeing myself or other parents of autistics as superheros could deeply hurt autistic kids.
Not until I was looking at that diagnosis right in the eyes.
That’s ableism. That was my internalized ableism. I feel terrible about it.
At the same time, I recognize that ableism, like racism, is systemic.
Meaning: systems, especially the medical and educational systems, are set up to prefer certain types of people over others. To tend to and accommodate what is, according to society, falsely, “normal.” Anything outside that is other, different, less.
This is the system we’re taught, that we all buy into. We’re indoctrinated.
In order for me to be helpful and hopefully create any meaningful change, I have to be honest and admit that I thought Asperger’s was better than autism.
It isn’t.
It’s the same damn thing.
These constructs were created just to make us feel more comfortable with being different … more accepted in society.
…And that’s, well, gross.
We all belong. We all matter! Equally. Even if the systems don’t teach us to believe so. Even if the systems do not treat us so.
Ableism is extremely uncomfortable. All of the “isms” are.
It’s not meant to be comfortable. It’s meant to divide and conquer. It’s meant to feed fear. It’s meant to separate people into better than/less than.
Even superhero parents.
<<<>>>
Parents of autistics and other people with disabilities are not better than, higher than, more exalted than other parents.
They’re just parenting differently.
Autistics are not better than or less than any other people.
We’re just living differently.
In order to elevate one group, you have to lower/demote another … that’s not a belief system that serves our world.
When parents think they’re superheros, they play into a story that there’s something wrong, difficult, hard about their kids … in comparison to other kids. But you can’t compare. There isn’t any comparison … it’s simply different!
When you have a population of people — like autistic people — feeling there is something wrong with them, like they don’t belong, that they’re not accepted, it hurts them and it hurts society.
It hurts all of us.
It increases isolation, non-acceptance, and leads to (or exacerbates) mental health issues.
We are socialized to believe that different is wrong.
People internalize the message that if you’re different, you’re not lovable. You’re not worthy of love. You’re not enough or you’re too much. Because you’re different. Because you’re “hard work.” Difficult.
Consider this:
Just as we can say, “Hey, that dude pays his child support and that doesn’t make him amazing—it simply means he’s actually adhering to LAW and doing the basic, bare minimum,” we can also recognize that if you love someone who is neurodiverse or has any divergent neurotype or disability, then that just makes you a regular person capable of love.
Not a super person with a heroic capacity to love.
<<<>>>
I’m not discounting that parenting is challenging.
Parenting a child who presents differently in the world has a different set of challenges.
You may need extra support, respite, tools, and skills to help you. Especially for any co-occurring conditions that go along with the disability.
Get those tools. Get that support.
Learn everything you can about your autistic loved one so you know how their brain works. Ask questions. Get curious.
Reach out to the autistic community. Read books by autistics.
Learn from autistic adults.
Do all that.
My only invitation here is to look within and ask yourself how you would want to be discussed and treated if you were autistic.
Most likely, you would not want someone to feel like a victim, or a superhero, for simply loving you and fulfilling their parental obligations.
…When we love someone, it’s our job to lean into understanding the other—with curiosity and patience.
It’s our job to come to a place that is even far beyond love … to a place of unconditional acceptance.
Unconditional acceptance that your child is different and unconditional acceptance that your life is going to be a little different than you anticipated.
…It would’ve been, anyway, if you had a neurotypical kid. Life never goes as planned.
Yes, loving us can be intense. We’re intense people.
…But that’s not grounds for an award ceremony. Or a cape.
Because … you’re not a superhero … and neither am I.
SOME RESOURCES ABOUT ABLEISM:
What a beautifully written and important piece. It should be widely distributed. I think this such an important voice to be heard in the world today! Thank you for sharing with that being autistic is not something to cure. That it can simply mean being different. I think that is a major point more people need to come to understand. Superhero in the context of living with autism or an autistic loved one and the superhero portrayal of anyone with health issues has become the dominant symbol and “logo” in fundraising. And it is so widespread and repeated too many times across all channels that I think we often alienate ourselves from the actual reality of everyday life. Not to mention that the superhero portrayal is an impossible standard to live up to. I really cherish that you are bringing it back to what the process looks like in real life and I love that your writing has this tone of encouragement on the path of sacred love as a parent <3 thank you!
Oh, thank you, Taida. I so appreciate you and your kind words. <3 <3 <3 Thank you for taking the time to write them and share with me. It made my day. You're right: it's impossible to live up to a standard of being a superhero (and they don't even exist). We simply need to love and fully accept one another. Love you!