What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Mom In Two Cultures.
New statistics from the CDC indicate that the number of kids with an autism spectrum disorder (ASD) is now one one out of every 88 kids, or one out of 54 for boys. At my house one out of three is on the spectrum and another one of the three is eyeing it, so here’s what I want you to know about autism.
Kids with autism have what's called a pervasive developmental disorder. Post diagnosis, I quickly learned how totally appropriate this designation is! Autism impacts every aspect if my son's life--his relationship with food and sleep, his experience in school, what he obsesses about, the way he sees, hears, smells, and feels, how he understands what people say and do. In other words, essentially every point of contact he has with the world around him is impacted by autism.
It also impacts every aspect of our lives with him; it’s pervasive because no one in our support network escapes his autism unscathed. Everyone who interacts with him has to have a deep understanding of his dietary needs. They also have to understand how to talk to him so that he can understand what they are saying. They have to know the routine and be able to stick to it. The have to be infinitely patient (especially when he interrupts for the millionth time to explain a certain Lego creation). Most importantly, they need to know what to do if he has a meltdown.
When my son has a meltdown, time stands still. He’s so loud, we couldn’t carry on a conversation if we wanted to. He’s a danger to himself and others, and he’s totally out of control of his words and thoughts. When he melts down, I have to drop what I am doing, go to where he is, and try to talk him off the ledge. If that doesn’t work, I have to physically restrain him until I can walk him to his safe zone where sometimes (but not always) he can calm himself down.
Meltdowns happen when he is overwhelmed, and he can get overwhelmed for myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick. Maybe someone said something he couldn’t understand. Maybe Mom is a little tired. Maybe there’s a bug on the window sill. Maybe Sister is singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t answer the question fast enough. Maybe his sock has a tiny hole. The list of possible triggers is maddeningly endless, and there is no way to completely eliminate them. We do our best by maintaining vigilant consistency in our routine and our diet. If it’s not on the schedule, we don’t do it. All spontaneity is long gone, along with our sense of peace and security.
When you're handed an autism diagnosis, you aren't also handed an autism handbook. That would be way too easy. Instead, you're given a list of suggestions and sent out on your own to make sense of it all. In our case, our list said he might benefit from occupational therapy, he should join a social skills group, he'll probably be bullied, so he'll need support in school, and if the sensory stuff gets to be too much, he might need medication. Oh, and don't believe the stuff you read about diet. I think none of that's true, and if you read it, it might scare you.
See when you have a kid with autism you also unwillingly stumble into two very contentious debates--one is about the role of vaccines in causing autism and the other about whether autism can be "cured" with diet, supplements, and other interventions. Your doctor can't help you understand these debates. In fact, most pediatricians know surprisingly little about ASD and what to do about it. If you're lucky, like we were, you will at least have one that's willing to consider the information you present about these issues and order the appropriate tests or refer you to the appropriate professional.
The thing is, there is no road map for any of this. It takes a good year post diagnosis to figure out how to start getting the services you need. In our case, it took another six months to understand enough about the diet stuff to embark on a gluten free, casein free, mostly organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.
And you can’t escape your life. You inhabit it every single day with the knowledge that it might not get easier and that the only people who really understand what it's like to have an autistic kid are other people with autistic kids. We're like an exclusive members-only club full of people who really don't want to be there.
You're lucky you can’t join thus club. Please know how lucky you are. My son’s case is relatively mild. He can talk. He doesn't run away or stay up all night or self injure. So, we're lucky, too. I know that, and yet, I can't help but mourn for our lost ideals and hopes and dreams.
It’s taken awhile for me to accept that this life is mine, and as I have, I’ve come up with a list of things I want people with “neurotypical” (aka non-autistic) kids to learn from my experience.
Here you go:
- Know how lucky you are.
- Don’t judge the parents whose kid is total chaos. Chances are he’s melting down, sensory over-stimulated, or completely confused by the social cues coming at him from all sides.
- Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Do their laundry. Baby sit.
- Educate yourself about autism (and don’t use television or movies to do it).
- Resist references to Rain Man or that kid from Parenthood. As the saying goes, “If you've met one kid on the autism spectrum, you've met one kid on the autism spectrum." They are all very different.
- Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.
- Resist the urge to tell a kid she's too old to chew on a baby toy / ride in a stroller / hold mom’s hand / get carried. This may be the only way the kid can get from point A to point B without being overwhelmed.
- Understand that most ASD kids don't "look" autistic (whatever that means).
- Realize that to some kids a trip to Walmart / an amusement park / the mall / a grocery store / pretty much anywhere can be like running the sensory gauntlet without a sword.
- Know that you can't really understand, but you can (and should) remember how lucky you are.