Welcome back to Reading the Research, where I trawl
the Internet to find noteworthy research on autism and related subjects,
then discuss it in brief with bits from my own life, research, and
observations.
Today's article is a clear showcase of the dual nature of advancing technology. A mobile app has been developed to help screen (test) children for autism. On one hand, if this type of screening turns out to be scientifically valid, this is a good start for families. Rather than wait, potentially for months, for their turn to pay hundreds of dollars at the specialist's office, they can get a quick answer here, and approach the specialist for confirmation and the "now what?" aspect of things.
The flip side, of course, is privacy. Data from this app is not likely to be handled like regular medical data, which is to say, it's probably not covered by HIPAA. As such, it does not have to be stored as securely, transmitted as securely, or kept on record for thus and such many years. It is much more vulnerable to being hacked, and unless the Information Age ends very swiftly indeed, those records will be available potentially to anyone for the rest of these children's lives. I understand the younger generation has fewer privacy concerns than mine does, but I still don't think it wise to simply leave information (including video recordings of people as children) lying around like that.
On a personal note, I wonder whether I would have reacted sufficiently differently that the app would have called me out as autistic. If it had, would that have been sufficient motivation for my parents, or even for the social worker that recognized me as similar to her son, to push for a closer inspection? The social worker was on somewhat unsteady ground. Equating one child to another is always a bit of a stretch. Perhaps, with the agreement of an app like this, it might have been sufficient to elbow them into paying more attention, and perhaps going to a specialist in hopes of being told "nope, that's not it." Or perhaps it wouldn't have mattered in my particular case. Regardless, I bet it will for others. I just hope one of the major effects won't be children being turned down from schools, or having records like these used to bully them.
Today's article is a clear showcase of the dual nature of advancing technology. A mobile app has been developed to help screen (test) children for autism. On one hand, if this type of screening turns out to be scientifically valid, this is a good start for families. Rather than wait, potentially for months, for their turn to pay hundreds of dollars at the specialist's office, they can get a quick answer here, and approach the specialist for confirmation and the "now what?" aspect of things.
The flip side, of course, is privacy. Data from this app is not likely to be handled like regular medical data, which is to say, it's probably not covered by HIPAA. As such, it does not have to be stored as securely, transmitted as securely, or kept on record for thus and such many years. It is much more vulnerable to being hacked, and unless the Information Age ends very swiftly indeed, those records will be available potentially to anyone for the rest of these children's lives. I understand the younger generation has fewer privacy concerns than mine does, but I still don't think it wise to simply leave information (including video recordings of people as children) lying around like that.
On a personal note, I wonder whether I would have reacted sufficiently differently that the app would have called me out as autistic. If it had, would that have been sufficient motivation for my parents, or even for the social worker that recognized me as similar to her son, to push for a closer inspection? The social worker was on somewhat unsteady ground. Equating one child to another is always a bit of a stretch. Perhaps, with the agreement of an app like this, it might have been sufficient to elbow them into paying more attention, and perhaps going to a specialist in hopes of being told "nope, that's not it." Or perhaps it wouldn't have mattered in my particular case. Regardless, I bet it will for others. I just hope one of the major effects won't be children being turned down from schools, or having records like these used to bully them.
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