Recently, an acquaintance told me she heard something about how taking Buddy to a chiropractor could cure him of autism. I told her I was rather skeptical of such things, and that I’m not looking for a cure. Amazingly it was the first time I was confronted with unsolicited cure talk, but I know other parents get it. And I can see why it gets old fast. In short, I’m not looking for a cure or a miracle. My goal is to accept my son. My hope is that others will accept him.
Back in college I did ABA therapy with children with autism and was exposed to a culture where parents read everything they could find on the internet and tried every scheme devised. Gluten free diets, no diary, a plethora of special diets and vitamin supplements, oxygen bags, enzymes, even chelation therapy, and that’s just the tip of the iceberg. And I really didn’t see any benefit from any of it.
What people fail to understand is that even with no intervention a child with autism will hit developmental milestones. They may start talking at 5, or they may not. But most likely the reason they started talking at 5 is genetic, not because of any intervention the parent took.
So if person A starts a gluten free diet and that week their child starts talking, most likely it wasn’t the diet. Likely they just hit that milestone.
Likely the cruelest thing about autism is the unpredictability of it. I think this will change in 20 years, but a child with autism could grow up to be a successful super genius who lives independently or a mentally challenged adult who can’t live independently, and everything in between. People in the latter group look at people in the former group and wonder what those parents did that they didn’t. Meanwhile, parents of children who are newly diagnosed look at the first group and wonder what they can do to replicate that success. And the pressure is on.
As best we know right now, autism is a big umbrella term for many different genetic disorders. This is the reason that some children grow up to do well while others struggle and still others can’t ever live on their own. The hard fact is that the best option is to get a child in a good program for children with autism and take things as it comes.
But with parents under so much pressure these days to ensure the success of their children, this is hard. So if person A had a “miracle” when they tried the gluten free diet, then that’s what they try.
I’ve made a decision not to chase rainbows. I’ll do the evidence based therapy and make sure he’s in programs where he’s happy and making progress. But I’m not wanting miracles, and I’m suspicious when someone offers me one, because anyone who studies and understands autism should realize that it’s so unpredictable from child to child that promises should not be made. Someone offers a miracle and I think snake oil.
I focus on accepting my son. I focus on finding his strengths. I’m not trying to cure or fix him. I wish I knew what the endpoint was so I could know what the plan for, but whether college is in the cards or he’ll never be able to live on his own, I want to accept.
That’s in my control, and it’s not where I struggle.
I struggle because I have found so little acceptance from this world, and I’m really skeptical that this world will be accepting towards my son. And that’s hard.