Autism, to me, was a puzzle piece. A character in a show who was often the punchline of a joke they didn’t understand. A problem in need of a cure. A child who stood out on the playground.
I didn’t know about autism.
With exception of shows like Parenthood, there just wasn’t a lot of accurate representation out there. I, like many people, learned because it came home to me.
Here are ten tough truths from a mom with a child on the autism spectrum:
1. Crying is a prerequisite — but it doesn’t have to be.
When you first find out your kid(s) may be on the spectrum, you cry. You don’t realize how ableist this is because you haven’t yet educated yourself on the invisible backpack of privilege you’ve been toting around your whole life, particularly if you’re neurotypical with no other health problems.
Both of my children are on the spectrum. Society told me that this diagnosis wasn’t good and that I should be afraid. But my kids weren’t dying. They weren’t shot in a place where they were supposed to be safe and educated. They are autistic.
This diagnosis is key to our kids. Tears, while natural, are unnecessary.
2. You feel relieved
When the diagnosis finally comes in, you feel a sense of relief. You’re not crazy. They’re not crazy. You just haven’t been on the same page or even in the same book.
Neurotypical parenting guides don’t prepare us for parenting on the spectrum. We likely made some mistakes because we didn’t realize our kids were wired differently. Now that we know, we can help them — and help ourselves in the process as life begins to make sense again.
3. You feel overwhelmed
Parents like me go on a deep dive into autism. We don’t dive into the conspiracy theories of autism and vaccinations. We don’t hide in those dark and dusty corners of the Internet. Instead, we read the work of autistic people. We read evidence-based studies and recommended books about the spectrum.
It’s incredibly overwhelming. Just when you think you’ve been given the key to figuring out your kids, you realize just how broad the spectrum is and have to throw out your one-size-fits-all neurotypical thinking. Your kid might not be like any of the autistic people you’ve seen portrayed in movies or TV.
It’s a lot of information, and you realize that it could take a lifetime to learn. It probably will.
4. You worry about the stigma
At first, I didn’t tell people that I suspected my children were autistic. However, after a deep dive into reading, I started educating other people and raising awareness. My initial worry about the stigma was reflected in everyone else whose discomfort at this information was immediate.
We don’t need to worry that other people will judge our kids for being autistic. We need to be more open about what autism is and what it can look like. This will help the people in our children’s lives better understand them, which is an immeasurable help.
5. You encounter ableism everywhere — even in yourself
“But … they don’t look autistic.” I hear that one all the time. It’s easy to be judgmental now that I’m further up the learning curve, but what’s the point? Ableism is everywhere — in our families and schools, on playgrounds, and on sports teams.
In fact, you’ll likely even find it in yourself as you use currently outdated terms like Asperger’s, high functioning, and low functioning. You don’t yet know that the correct terms are having high support needs or low support needs and that there are mixed feelings about using Asperger’s at all.
There’s so much of our modern society that is built on ableism that it can take a while to unpack. At a certain point, we begin to actively dismantle it to help create a better world for our children.
6. You learn that not every autism organization is reputable
I learned the hard way that Autism Speaks doesn’t always speak for people with autism and is, in fact, damaging to that community. I learned this when I used my birthday fundraiser on social media to support this organization the first year after my children were diagnosed.
If you’re only listening to neurotypical advocates and not adults with autism, you’re missing the most important piece of education.
Autistic people have many issues with Autism Speaks, with the puzzle piece symbol as a representation of autism, and even with ABA (applied behavior analysis) therapy. If the autistic community says that these things are harmful to them, we believe them rather than assuming we somehow know better because we listened to an “expert” or read a book by a neurotypical.
7. You become the ultimate advocate
Let me be honest: I am the mean mom on the playground. I have to be. It turns out, that all these neurotypical families are teaching their kids to be bullies because they aren’t teaching diversity or inclusion at all. The “weird” kid your kid is making fun of just might be autistic.
See what I mean? My kids have big hearts. They can be kind because they have a mother who is fierce. The closest I’ve ever come to throat-punching another adult was confronting the parent of another child on a playground. It’s unsurprising that the mean kid had a mean mom who thought it was acceptable behavior to talk about how another kid dressed or behaved. My kid might have been in costume, but her kid was the bully making fun of him.
Having a diagnosis of any kind just might turn you into an advocate. You learn just how important representation is — particularly representation that isn’t wrapped up in ableism. You begin to spread awareness. You make sure other people know when they’re being ableist — as gently as you can possibly manage it.
You’re trying to be your kid’s advocate and not an asshole, but sometimes, the line blurs. You decide that it’s okay if other people don’t like you if your kid’s needs are met.
8. You learn acceptance is better than awareness
You don’t read the article about “cures” for autism. You know it’s a normal part of the human spectrum, not a disease that needs to be cured. Instead of expecting your autistic kid to learn to be like you, you realize the world would be better if we learned to be a little more like them.
After all, your kid isn’t afraid to be who they are or wear what they want. They have no problem saying “no” or letting you know they’re overstimulated. They can be blunt, but they’re generally kind. Meltdowns are trying to tell you something, and maybe — just maybe — they’re helping you to be more sensitive to other people and to the world around you.
9. You build a strong support system
One of the best things I ever did on this journey was signing us up for an autism family camp. For a long weekend, we were around other adults and children with autism. I didn’t have to be the mean mom on the playground because no one at this camp was going to make fun of anyone for anything. Everyone was accepting and kind to one another.
I’ll be honest — I didn’t talk to a lot of camp counselors or other parents. I was so focused on just enjoying the time with my kids in a safe environment. I might not have shown it, but I was overwhelmed with gratitude that there was a place where we could be a family and I didn’t have to always be on guard looking for bullies.
Since then, I’ve been lucky enough to participate in support groups for other families with kids on the spectrum — not the kind where we sit around and cry about it. These groups have been the kind where we learn more about autism and how to be the best possible advocates for autism acceptance. The support in this community is real.
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10. You become so grateful
Both of my kids are autistic. They are perfect just the way they are. I’m happy to have kids who are smart, quirky, and entirely individual. I don’t love the anxiety that comes with autism — for them and for me — but I do appreciate having the tools to address it.
I began to understand that the first year or two of meltdowns and problematic behaviors were a result of a massive miscommunication. I was following that one-size-fits-all parenting technique with kids who just didn’t think the same way neurotypical kids do. As I learned to parent my autistic kids as individuals rather than cardboard cutouts of “ideal” children, peace returned to my home.
Meltdowns are less frequent. We’ve learned how to better communicate with one another. They’ve learned they can trust me with their thoughts and feelings because I am a safe person. They’ve learned that some people let them be themselves while others try to change them. I’m grateful that I am a trusted, safe person for them.
Every day, I’m still learning about autism. I don’t know everything. I still make mistakes.
I think I’m a better parent and person for having kids who have special needs. But then I think about it. Don’t all our kids have special needs? Wouldn’t it be better if we treated them like individuals rather than trying to parent them in one particular way?
My kids have always been autistic. We just didn’t know it for a while. The diagnosis changed our lives. We’re a happier family for it.
I guess that’s the ultimate truth about autism. It’s not the end of the world. It’s not even bad news. It’s just a new beginning.
Crystal Jackson is a former family therapist who writes across genres to encompass blog posts, poetry, short stories, children’s books, and literary fiction.
This article was originally published at Medium. Reprinted with permission from the author.