Saturday, December 29, 2012

Two Years Out: Reflections from an Autism Parent

Two years ago this month, we got Sky's autism diagnosis. As I've said before, I was less shocked than relieved to finally know why life with him was so darn difficult (link). So, two years out, here's what I want you to know about life with autism:

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.

It took me awhile to figure out that the person who diagnosed Sky was decidedly afraid of biomedical interventions, though I still have no idea why. 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 try to refer you to where you need to go. If you're even luckier, you'll find a doctor like our new one who is up on the research and who knows which tests to run and which diets to try and who knows what to do when an ASD kid is sick.

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 find a good doctor and 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.

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 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 this 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. He’s potty trained. He keeps up in school. So, we're lucky, too. I know that, and yet, I can't help but mourn for all we’ve lost to 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 that some things are a lot easier for you than they are for other parents and that doesn't make us bitter or jealous. We just want you to understand things are really REALLY hard sometimes.

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 the grown-ups 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 can all be very different from one another.

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 even though you can't really understand, you can still help.

For my reflections on year one, click here.

* The HBO movie about Temple Grandin (called Temple Grandin) is the exception. You can also see her TED talk.

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