Autism and Information Technology: Big Data for Diagnosis

The final installment of this month's Autism and Information Technology series, and the last part of April's blog challenge (plus Autism Awareness Month). My last three entries were focused more so on people with autism getting into the IT field for careers, including my own journey and my current job search. This time, why not reverse it.

So how can advances in information technology benefit those on the spectrum? Well, that's a long topic in itself, but a one technology had me curious to say the least. At the end of March I attended a conference called Data4Decisions. One of the sessions at this conference was on big data and analytics transforming life sciences from a patient perspective. A focal point of the presentation came from the Duke University Medical Center, where they discussed a new algorithm to diagnose autism through the toddler's behavior and other data gained on this in-hospice app. The data gained from this technology would be used to interpret if a child could truly be considered on the autism spectrum.

As we were told at the forum, the behaviors could be mapped to various questions and screening tests. Then the big data part comes into play, which is where I get curious as to how the data is used and programmed. I went through some tests as a child but not to this extent. While I don't know what programming languages are being used here, the data model at hand is another complex question.

Naturally, I wonder if this technology could be adapted to adults, so that we can understand each other in our interpersonal relationships. Many adults have been diagnosed later in life, particularly over the last decade. There is potential to tweak the algorithms and develop the app to use more verbal functions and continue to break through with big data. With the new $9.75 million grant in place for Duke's entire Information Initiative, the possibilities continue. It's how data and information technology can be used to help not only detect if a child is on the spectrum, but how to understand the child as well.

Can Autism Be Prevented?

Posting an article like this one makes me want to start a Twitter feed.

The reliable Emily Willingham has a great take-down of a piece on Fox News asking if autism can be prevented. I really can't give a full editorial on this, as she words this much better than I ever could. Essentially the main source, Robert Melillo, is on a PR campaign to promote brain balance, so it's a rather convenient argument for him. I know more than a few of us take issue with Fox News on their politics, but even on news like this, it's ridiculous.

Most of the “measures” remain hidden in the pages of this book–which you can purchase!–but the one the article cites? Prenatal vitamins. Raise your hand if you took prenatal horsepills before, during, and after pregnancy and still had a child with autism. Melillo seems to be referencing this paper but misinterpreting the odds ratio data. The authors note the limitations of their study here in the full text of the article, which included that it relied on maternal recall of vitamin intake around pregnancy, several years after the pregnancy. They also did not collect information on diet. So, sure, take your prenatal vitamin, but don’t do it because you think it’ll prevent autism.

I'll have a bigger blog keeper on the way this week about a big step towards a big accomplishment, and juggling tasks in light of this.

Sandy Hook and the Spectrum Connection

In mid-December, a small town in Connecticut was rocked by a school shooting.  A true tragedy for the nation, and it's hard to fathom what those families directly involved went through.  I really don't know what words I can use to reflect on the events of that December 14 day in Newtown.  I then heard the news that the shooter may have had Asperger's, so obviously there was an outrage that followed.  I was tempted to blog on this, but decided to hold my tongue.  Days later, I found that there were a ton of link that talked about this already, and most of these said what I was looking to say.  So here are some links, which are worth reading in full.

The New York Times has a great editorial that exposed some of the news coverage for what it was, using the key terms of autism and mentioning it as an illness rather than a simple neurological developmental disorder.  The media reporting won't help distinguish what autism spectrum disorders truly are.  People will just hear the characteristics and not understand the difference.  Thankfully the public editor came through to explain that clarifications were added a week later:

If there were solid sourcing last week of the Asperger’s diagnosis, the issue of its relevance could have been handled in a clarifying follow-up sentence — for example: “Autism and Asperger’s are developmental disorders, not mental illnesses; and there is no connection between them and violent behavior.”

Mr. Halbfinger protested when I suggested the idea of such an explanation, particularly in a first-day story. “To me, it seems kind of ridiculous; that’s the journalistic equivalent of a nanny state,” he said. He added, though, that as a parent himself, he does understand how parents feel about this subject. And he sees that there may be a “knowledge deficit” – people may not know very much about autism and Asperger’s.

Too often a lack of empathy was credited as a reason why there was a connection, but it really doesn't make much of a difference.  A piece in Slate distinguishes cognitive empathy from emotional empathy, and how many of us have the latter.  I would totally vouch for this one, because recognition of emotions (i.e. reading people) is my problem, but when emotion is manifested in a person, I can them internalize these feelings and can at least share it to a partial degree.  Most psychopaths are the reverse.  The writer relates with her own son:

My 11-year-old son is diagnosed with Asperger's, soon to be simply "autism," thanks to impending changes in the DSM-5. He is a rowdy giant of an 11-year-old who loves tumbling play with his brothers, but his spirit couldn't be more gentle. When he finds a spider in the house, he carefully gathers it in a tissue and places it outside, alive. He can't bear to watch people crack tree nuts, like pecans, because being something of a tree nut himself, he feels pain on behalf of the nuts. He is so attuned to all of my nonverbal communication that he will recognize and respond to a fluctuation in my mood faster than anyone else in our house, including my husband.

He knows about the Dec. 14 shootings in Connecticut. When he learned about them, his first response was to turn away in the chair where he was sitting, drooping his head over the back. He stayed that way for many long minutes, quiet and still. When he turned around again, my child who rarely, rarely cries had tears in his eyes. And then, his first urgent concern: that we break from homeschooling and go get his brother, our youngest son and in first grade, from school ... now. And as we drove to the school to pick up his brother, whom I badly wanted to see and hug and hear, my oldest, autistic son voiced what I'd already decided: "Let's not tell him what happened. That's not something he needs to know. It would make him too anxious and scared." Perspective-taking and empathy, you see.

Many parents have been pushing back at this suggestion as well, drawing from their own experiences. Even the EVP with Autism Speaks came forward with this summary statement: "By definition, people with autism are not inclined to commit acts of violence...[i]t’s really important to note that having an autism diagnosis doesn't make you the type of person to commit this type of crime."  Another point made here by an Aspie who is only 15: "If you meet somebody with Asperger's, you've met only one person with Asperger's."

I am, of course, a person with Asperger's, maybe high-functioning autism (at least the DSM-5 will define me that way).  I don't want to dignify the killer or let his name linger in any way, but there is something that allows the story to resonate with our community, whether it is for the purpose of defense or making a connection. Just as we know of people with antisocial personality disorder, most of them are not violent, or at least learn ways in which to control their impulses. They may be a politician, a lawyer, an artist, a Fortune 500 CEO, or a janitor. Same can be said for individuals with Asperger's Syndrome. However, when you have an individual who has difficulty reading social cues, relating to others, and empathizing, all the while combining it with violent impulses (among other important risk factors such as traumatic history, early attachment issues, limit resources and social support) it can really become a horrific situation for that individual and those who care about him or her. We all want to make sense of tragedies, and have an almost existential need for a motive. Here, it's not autism. We don't even know if it was ever diagnosed at this point. As is the case with the dialogue about gun control, we need to honestly examine all of the underlying causes with sincerity and tact. Only then can we begin to understand and hopefully prevent the horror from happening again.