My son A-Man is autistic. Notice, I didn’t say that he “has autism” or that he “is a boy who happens to have autism” or even, as some people who are adamant about person-first language would say, “is a boy who likes goldfish crackers, Paw Patrol, playing catch, and happens to have autism.” He is autistic.
Simply saying my son is autistic can make me pretty unpopular with a lot of autism mamas. In fact, I’ve recently learned a lot of my beliefs and views on autism are radically different than the “typical” view autism parents have. When we first received my son’s official diagnosis, I started researching like crazy and talking to as many autistic teens and adults as I could. I wanted to know how they felt, what helped them growing up, what they wish their parents hadn’t done, what they wish they had done. To me, that just makes sense.
If a man wants to help a woman, he would ask that woman what she liked/disliked/needed/didn’t need. He wouldn’t go ask another man who happened to know a woman at one point. To me, it just doesn’t make sense. Of course, that man may have some decent tips, just like some parents of autistic kids have decent tips. But if they are not autistic, they cannot accurately explain how an autistic person feels or thinks.
After all my research and chats with autistic people, I’ve learned a few things parents could be doing that unintentionally hurt their child. Today I’m sharing why I say he’s autistic, and other things that make me an unpopular autism mama.
1. The autistic community prefers identity language.
I’ve written an entire post about why we choose to use identity language when referring to our children, and you can read that here, but for now I’ll give a quick overview. The whole point of demanding people use person-first language is to separate the person from the disability and to remind people that disabled people are real people. (Holy cow, how many times can I put “people” in a sentence?) On the first point, I don’t see a need to separate my child from his disability. It’s a part of what makes him who he is. I say he’s autistic just like I say he’s a boy. I wouldn’t say he “happens to have maleness.” On the second point, I think if you need to check your language to be reminded that anyone is a person, you have bigger issues. Also, working so hard to separate the person from their disability promotes the stigma that disabilities are bad things that “happen” to a person rather than a part of what makes them who they are.
2. We are selective about therapies.
A-Man receives speech therapy to help his expressive language delay so he can more effectively communicate. He receives occupational therapy to help him learn coping mechanisms and regulate his sensory needs. He will soon start receiving physical therapy to help him with his motor skills affected by his dyspraxia. He is not, however, receiving applied behavior analysis (ABA) therapy. Many parents see ABA as the holy grail of autism therapies, but I really don’t see it that way. If you’re unfamiliar, ABA is a therapy designed to change the behaviors exhibited by autistic children so they can more easily fit into society. Essentially, the goal is to help a child learn how to pretend to be neurotypical. (Quick side note: anyone who was offended that I don’t use person-first language probably didn’t have an issue that I didn’t just say “the goal is to help your child learn how to pretend to happen to have neurotypicalism.”) Some forms of ABA use techniques designed to silence autistic people and force them to comply. While there’s a time and a place for ABA, and you can find therapists who practice in respectful ways, it isn’t something that’s right for our family at this time. If we do try ABA in the future, it will be highly regulated and used for specific tasks only. And if one therapist ever tries to tell my child he can’t stim, they’ll have another thing coming!
3. I’m not sad that he’s autistic.
I mentioned before in my letter to a mom who just received her child’s first autism diagnosis that it’s OK to feel however you feel, and it is. Most moms will agree with that. I embrace my son’s autism. It’s a part of what makes him special, just like one child’s giftedness makes him special and another child’s global developmental delay makes him special. Autistic people add another color to our beautiful rainbow of a world, and I would never want to see a world without it. A-Man lights up my life each and every day, so I’m not sad he’s autistic. I’m sad the world may forever treat him differently. I’m sad at the lack of education, acceptance and love for the autistic community. My son and his autism aren’t what’s wrong; society is.
4. I don’t think I’m a superhero.
There’s a common belief out there that all special needs moms are superheroes, that our kids are so incredibly lucky to have families that care for them. Honestly, I think this is a bit ridiculous. When people imply that I’m a “Super Mom” because I simply love my children with disabilities the same way I love my children without, it’s a bit insulting. It implies it’s difficult to love an autistic child, which I assure you, it is not. I’ve loved all my children since the moment they were each born. I love A-Man when he struggles with eye contact. I loved Baby M when he refused to eat solid foods. I love Mr. C when he’s throwing a tantrum. I love Miss S when she’s crying while I’m trying to write a blog post (guess what’s happening right now?). A-Man is no luckier to have me than Miss S is. Baby M is no luckier than Mr. C. I love, fight for and do everything I can for each of my kids. That makes me a mom. Some may even argue that makes me a good mom. But simply treating my special needs kids the same way I treat my kids without disabilities doesn’t make me a Super Mom.
5. I don’t think you or that cheerleader or that celebrity are superheroes.
There are a lot of news stories about people with special needs that drive me absolutely insane. “Cheerleader Takes Autistic Boy to Prom” should not be news. “Cashier is Nice to Girl With Down Syndrome” should not be news. “Girl in Wheelchair Made Homecoming Queen” should not be news. Don’t get me wrong, these stories can be heartwarming, and I read and share plenty of them for that mama who needs a pick-me-up on a rough day, but let’s take a step back and ask why it’s news. If you took the disability out of those headlines, would it still be news? Absolutely not because it isn’t shocking when someone goes to prom, becomes homecoming queen or is nice. It is apparently, however, shocking when people do these completely normal things for people with disabilities. Someone inviting an autistic child to a birthday party shouldn’t be newsworthy; it should be commonplace human decency. I don’t think someone is a hero for simply treating autistic and disabled people like he or she would treat every other person in the world. It doesn’t make that person special; it makes him or her a decent human being.
6. I don’t want your “special needs prom.”
This goes along with my last point, but I really, really do not want my children singled out for events like this. There is a “special needs prom” being held in my area next month, and I really don’t understand. People are trying so hard to “give special needs kids a night to feel beautiful and shine.” Why can’t they do this at their high school prom, like everyone else? Maybe, rather than making a cutesy prom just for disabled kids (which will likely make the parents/volunteers feel like they’re doing something good rather than actually doing the kids much good) we could simply make their actual prom more inclusive? I’ll admit, sometimes having the option of an event designed for autistic kids is helpful. A movie theater in my area puts on sensory-friendly shows which helps kids who can’t tolerate the typical loud noises at a theater. It’s simply an option if that showing will fit their needs better. The prom just keeps kids separated. There’s still loud music and bright lights, so it isn’t making it more accessible to autistic kids (or kids with other sensory issues), so I don’t see any point other than to say they did something nice for the special needs community.
My intention with this is truly not to offend anyone, I’m simply sharing my thoughts. I’m certainly not popular with typical autism mamas, but I’d much rather offend them than my own autistic son. My advice? When in doubt, ask someone who actually has your child’s disability. Don’t blindly trust the experts. One thing an autistic person told me that put it all into perspective is this: “Those experts screaming for person-first language are the same people who used ‘mental retardation’ as a diagnosis.” The disability community is constantly changing and evolving, and as parents, we’re just along for the ride.
Follow this journey on This Outnumbered Mama.