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Wednesday, May 7, 2014

Autism Science, Birth To Thirteen 05-08

Autism Science, Birth To Thirteen

One of my sons is autistic. He was diagnosed about a decade ago at age 3 for the symptoms recognized at the time but likely would have been diagnosed earlier given what we know now. Like all autistic people … like most people … he has grown–taller than I, at this point–developed, matured, and changed. And along with him, the way people view and talk and think about autism has changed, as well. 
In the 10 years since his diagnosis, we’ve gone from hearing “I’m sorry” when we mention having an autistic child to a much more mixed response, one that often is as weighted with curiosity and interest as with sympathy or pity, and that’s a good thing. But there is always room for improvement.
Autism itself has been a fairly stable part of the national and international (although not enough in the latter case in many countries) conversation for his entire life. Before we had our son, I’d heard these hints about vaccines and read the literature, which I found less than compelling evidence against having him or our other children vaccinated.
 So from the beginning, vaccines didn’t seem like a relevant component of who our son is, except for being alive and healthy and protected against a host of diseases. He, at least, was born the way he is, and our family tree is full of branches of people whose traits overlap or brush up against his. But where some of us sprouted only a trait here or there, his branch is laden with the budding collection of behavioral and other signs known together as autism.
The A-Z of Autism
Having had genetic analysis done, we have some hints about how our various familial components came together to shape our autistic teen, this delight of our lives. The most high-profile and carefully done research suggests a weave of what could be countless permutations of genetic combinations to yield the broad spectrum of autistic behaviors and manifestations. A decade ago, the talk was about triggers and the national obsession was vaccines and autism. But the genetic work makes it more and more evident that a mixed grab-bag of possibly thousands of changes in DNA sequences can interact with one another in any number of ways to produce the unpredictable emergent property we label as autism.
For years, I thought that an environmental component might emerge as a strong contender, and I would cast my mind back on exposures our son or I might have experienced that would extrapolate to a broader picture. I was biased in that direction, certainly. 
My research focuses on developmental biology and the effects that disruptive agents can have during embryonic and fetal development in humans and non-human vertebrates, so my knowledge in this field guided me. But some chemical candidates that seemed viable didn’t pan out, and to date, nothing beyond some intrinsic parental factors has emerged as a reasonable causative environmental agent in autism.
When our son was diagnosed, the search for autism causes was fevered. It remains so, sometimes with results bordering on the silly and sometimes with more useful information. But 10 years ago, that search was for a candidate agent, perhaps a handful of agents. Today, the picture much more clearly shows the genetic influences and the complexity that underlies those influences.
These shifts in understanding matter to someone like my son. A decade ago, the talk about autism was all negative. News stories dripped with pity for parents, described their children in dehumanizing terms, referred to them as “suffering” autism as one would suffer from cancer or multiple sclerosis. But an evolution of understanding is under way–with a vocal, urgent, passionate group of autistic advocates taking the lead.
 Other journalists have taken the time to contact me to ask about language when writing about autism. Autistic people increasingly are central to their own stories. Journalists seem increasingly to recognize that autistic people can view their autism as who they intrinsically are and that writing about autism as a universal negative dehumanizes and depersonalizes autistic people.
Researchers would do well to follow suit. We won’t find one single cause for autism, no matter how much money we throw at trying to do so. Map the last decade of autism research, and you’ll find cul-de-sac after cul-de-sac of dead-end ideas or streets lined with echo chambers reverberating with results from the same groups, saying the same things, tracing the Rube-Goldbergian contraptions built within the framework of their pet hypotheses.
What you won’t find is sufficient mixed-use development of both research into cause and research into support. What you won’t find is enough research that involves asking autistic people themselves about themselves, about what they need, what would support and help them most, what would help them learn and thrive and manage the deficits that come with their condition. 
For so many human conditions–and let’s face it, we all have our Something, our neuroses, our sensitivities, our obsessions, our poor coping, our struggles–resources abound in the form of evidence-based interventions backed by piles of research, support groups online and in the real world, personalization and educated understanding from people who share these Somethings.
Autistic people need that, too. My son needs that. As we turn over the calendar to the teenage years, I can look back on the decade or so since his diagnosis and see how far he has come, how he flourishes, how he has always been loved and supported and understood so deeply within his family and the ways that this acceptance has opened the space he needed to reach his potential. Our efforts for his entire life have focused on attending to and learning from him what he needs to cope independently with his own unique set of Somethings.
He is an n of one, an anecdote in the context of science, our beloved, happy, hilarious, precious anecdote. In science, he would be, at most, a case study. But case studies are hypotheses in the making, and I’d like to hypothesize here that a scientific framework that centers autistic people and focuses on their needs would be as efficiacious for the autistic population as a whole as it has been for our son. Let’s hope that’s that the next decade brings more of that.