Chasing the why

"I must start at the beginning, if I can find it. Beginnings are elusive things. Just when you think you have hold of one, you look back and see another, earlier beginning, and an earlier one before that." -Mudbound

Two years ago, in March 2012, we began our autism journey. I made the phone calls and arranged Henry's second speech evaluation, hoping this time we'd be approved for therapy. I never expected, when I made an off-hand remark that my mother suspected autism, for the psychologist to say, "I can understand that." What? Cue the record scratch.

We closed our front door behind the psychologist and therapist and opened the door to our new life. In short order I gathered as much information as I could find. Calmly, methodically, and with a fire I didn't know I had, I put myself through grad school on autism. Hand me the diploma; I've got the degree. And I realized it was true. I didn't need the ADOS test to confirm, though Henry was given that evaluation, among others, and received the formal diagnosis in August.

Two full years have passed since we agreed I would make the phone call. Much has changed, but much remains the same. Folks still want to know why. They grasp at straws, wanting someone or something to blame.

What is the true beginning of Henry's autism? Is it August 2012? March 2012? Summer 2011, when we had the first speech evaluation? Was it nine months old? Was it his birth? Was it in utero?

I don't care.

I'm not saying I wouldn't be in favor of a cure. I'm not saying I don't hurt for the folks who have life much harder than Henry ever will. I'm not saying I don't hurt for their parents. Yes, I wish the nonverbal 12-year-old in diapers could have a different life. Yes, I wish adults with autism had more opportunities for meaningful work. Yes, I wish no one had to worry about where their autistic children will live and who will take care of them when their parents die. Yes, yes and yes. All of that.

But do I care why Henry has autism? Nope.

If I dwell on the beginning, which is almost certainly unknowable, I will lose precious time and energy on what I cannot change. I will waste Henry's now and Henry's future.

In the last couple of days, Keith's news aggregate app has found three articles implying three completely different causes of autism. Those three ties to autism do not include the ones we've previously heard. If we compiled all the phenomena ever linked to autism and said to the world, "This is it! Here! Don't do any of this if you want to avoid autistic children," do you know how ridiculous it would look?

Many years ago, when yet another news report suggested bad side effects from I-don't-even-remember-what-food, I remember saying, "One day we'll hear bananas are bad for you." And guess what? Nowadays, if you follow a low-glycemic-index diet, they are! I kind of feel that way about autism. At some point, if we keep up this search, everyone will be terrified to have children.

I'm one hundred percent in favor of the groundbreaking brain imaging and other testing that allows us to more fully understand the autistic brain, and I do hope this research will lead to a cure. What I despise is the idea that if we had only done _____, our children wouldn't be this way.

I know I'm not the only mom who can say she did everything "right." My pregnancy was perfectly routine, and I was probably the most healthy I'd ever been. I followed all the rules. I took folic acid not only during my pregnancy but for years prior. I didn't drink, smoke, or use drugs; I didn't eat soft cheese or cold lunch meats or raw sushi; I avoided all the bad fish; I took only FDA- and AAP-approved-for-pregnancy medication. I slept well, ate well, and exercised. I gave my baby the healthiest womb possible, and his dad provided the healthiest sperm possible by being a healthy dude. (And young! Lo and behold, latest research says old dads have a higher chance of autistic kids.)

So, no, I don't care about the why. Henry's here. He's beautiful. I love him. The world is so blessed to have him here. Does life suck for him sometimes? Yep, but most of the time, it doesn't. And even if it did - even if he was nonverbal, had the IQ of a two-year-old, and had no hope of ever graduating high school - I would not bury myself in the why. Because it would not and will not change his now, and I want his now to be awesome.