October 7, 2014

Big Data, Little Boy

According to the CDC, 1 in 68 children has been identified with autism spectrum disorder. The rate is five times higher for boys than for girls. These are staggering numbers. And like many parents of autistic children, I'd like to know why the numbers are so high.

To clarify, I'm not looking to blame anyone. I'm not trying to point to a government conspiracy or looking to sue "Big Pharma."

I'm also not looking to cure anyone who doesn't want to be cured. Even the term "cure" is controversial, as autism is not a disease. And, just as many in the deaf community choose not to become hearing, even if that technology is available to them, many autistics do not want to change their neurology. Being autistic is a fundamental piece of who they are, and feel no desire to change. I can respect that.

However, Moe is severely disabled and if there is information that can help me find ways to help him thrive, I want to do that. And I believe at least some of the answers come with information. Lots and lots of information.

This summer, Google and Autism Speaks announced a partnership "to accelerate advances in autism diagnosis, subtyping and treatment as part of Autism Speaks 10,000 Genomes Program." Autism Speaks would like to sequence 10,000 genomes, and will host the data on the Google Cloud Platform.

Like all data, this genome information is morally neutral. What we do with it may not be. Some are concerned that it will eventually be used "cure" autistics, or to detect autism as part of prenatal screening (much like Downs Syndrome can be detected). But I have high hopes for this kind of research. There is so much we don't yet know about autism. Why do some kids respond to early intervention, seeming to "recover" almost completely, while others do not? Why do some kids seem to regress, as Moe did? What are factors leading to relative severity of the disorder, and why are certain co-morbid conditions, like epilepsy, so prevalent? Why might some seem to respond better to dietary or biomedical interventions while others do not?

Today, parents need to try out a host of expensive and time consuming therapies to determine which ones are the most effective for their kids. And with so many options, it is hard to try everything. It would be valuable to know, a priori, what kinds of therapies Moe might respond to best, or where to focus our efforts. 

We must not, however, forget that, our ultimate concern is at the most individual level. That the goal is help autistic individuals and their families. Whatever Big Data may someday tell me about what caused Moe's autism, or what his subtype, he is a human being with his own likes and dislikes. And we humans have a funny way of not always doing or responding the way the data says we should. We must be careful to remember that while their genomes can be classified, autistic people are each unique individuals.

I am a fan of big data. But I'm an even bigger fan of one little boy.

Moe, perusing a toy catalog while
snuggling his Android.

This post was inspired by Dataclysm: Who We Are (When We Think No One’s Looking) by OKCupid co-founder Christian Rudder. Join From Left to Write on October 9th as we discuss Dataclysm. As a member, I received a copy of the book for review purposes.

Visit Autism Speaks to learn more about the AUT10K project or read this story from USA Today.

September 8, 2014

Suffering is not a Spectator Sport

I've been thinking about something for a few days. I'm not quite sure if it's worthy of a full blog post or if I'll be able to accurately or adequately express these thoughts. But I'll try.

Kelli Stapleton, a year after she attempted to kill both herself and her daughter, plead guilty to first degree child abuse. Kelli's family has been in my thoughts for a long time. As the parent of a child with severe behavioral issues, this case evokes some pretty complex emotions for me.

This recent news has also brought up the same discussions (I use the term loosely) on Facebook, the same "you're with us or against us" battles between autistic adults and parents of autistic kids. I won't go into that today.

Because what I've been thinking about isn't that. It's about how we all have the liberty to talk about this. How freely we blame, and pontificate, and judge and analyze and criticize. And how, for all except a few who do know and care about Kelli personally, this all smacks of so much gossip. How it is so easy to just speculate and fill in missing pieces, and be outside of—and above—it all.

But if this were your best friend, if this were your family, if this were YOU (and no one should be so smug as to think it couldn't be), these horrible events would be nothing short of a tragedy. It would be devastating to so many lives that you cared about. The Stapletons are living this nightmare.

And yes, we can blame Kelli for the acts that brought them to this tragic place. Although I do believe this is a complex situation, and I do believe that ANY of us could be brought to a breaking point, Kelli is, in the end, guilty.

But how, with all our Internet Outrage, are we actually helping anyone?

While we're thankful that Issy has (from what I understand) recovered physically from the incident, have we succeeded in getting Issy a safe environment where she can learn and be safe?

How does it help Kelli's other children to call her a monster? Children who, while trying to come to terms with the destruction of everything they knew, also miss the woman who loved them more than anyone in the world?

And while we're bickering over when and where it is appropriate to have conversations about better family support services, how are we helping Kelli's husband, a man who now has a family to raise by himself, including an autistic daughter, and must need more support than ever?

These are real people we're talking about. This is not reality TV or some kind of spectator sport. This is a family who is hurting. And I hurt for them too.


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