What You Need to Know: Two Years Out

First, this. A statement from Autistic Self Advocacy Network about the events in Connecticut.

The shooter was autistic. So what? Please know all you can about autism before you even begin to think about what that means. My guess is that this fact alone is irrelevant. The shooter was also 20, male, the son of a teacher, and the youngest in his family. And, there's a lot we don't know and shouldn't know about him, his family, or the situation. Please don't let mainstream media tell you what you know about autism.

Ren and I are heartbroken for all involved just like the rest of our nation in mourning. What else can we say? What can anyone say?

*****

And now, my original post for today, this two-year anniversary of Sky's diagnosis--What You Need to Know:

Kids with autism have what's called a pervasive developmental disorder, a term you probably haven't heard unless you're living it. Post diagnosis, I quickly learned how totally appropriate this designation is! Autism impacts every aspect of 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. They have to be infinitely patient (especially when he interrupts for the millionth time to explain in excruciating detail a scene from a movie he watched months ago). 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 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 hold onto 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.

When you're handed an autism diagnosis, you aren't also handed an autism handbook. That’d 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. 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, organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.

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:

1. Know how lucky you are.

2. 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.

3. Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Baby sit. Bring coffee.

4. Educate, I mean really educate, yourself about autism (and don’t use television or movies to do it).

5. 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.

6. Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.

7. 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 everything falling apart.

8. Understand that most ASD kids don't "look" autistic (whatever that means).

9. 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.

10. Know that you can't really understand, but you can learn how to see all the difference in the world with openness and acceptance.


For my reflections on year one, click here.