Saturday, 09 January 2010

• Autistic-Like? And the Numbers

  Special Post: I was invited by The Atlantic to comment on their article, "Behind the Autism Statistics":

  While a three-ring circus of journalists led by the blogosphere, a conglomeration of government, and medical agencies and the autism community wrestled with unofficially announced CDC numbers indicating an increase in autism, a quiet revolution was taking place. A revolution led by a filmmaker-dad and an increasing number of empowered parents pushing back at labels that they claim should not and do not blanket their children.

  Erik Linthorst is a soft-spoken, talented man impassioned by his family's traumatic experience of having their son sucked into a vortex beneath the autism umbrella and later finding their way out from under that broad label and bonding with a growing community of others who claim they are only "autistic-like."    

  
  

  I first wrote about Linthorst here in April, including my review of his film, Autistic-Like, preceding its Nashville Film Festival showing. Eight film festival showings and a Health and Media Award increased the momentum of Erik's message. This weekend, 90 venues worldwide are showing the film--in Asia, Australia, Africa, Europe, South America, the United States and Canada.   
  

  What's not clear, because the CDC's embargoed report on an increase of autism incidence will not be released until later this year, is how children, like Erik's son, will be affected by the new numbers and also by the new Diagnostic and Statistical Manual to be updated soon as well.

  Last week, The Atlantic covered the controversy of families who received an autism label that didn't fit their still differently abled child. My review of Autistic-Like is candid. And, I admit here that the three of us in our local ASMT--a Middle Tennessee autism support organization--who viewed it had mixed feelings about recommending that the Nashville Film Festival show it. (The Festival graciously gave us the option of reviewing it and recommending it be included or not.)

  While we winced that the film's interviewees questioned autism incidence numbers, what we also recognized was an important message--and one that we already knew: that some children present some of the characteristics but not even enough to be diagnosed with autism, yet still maddeningly "autistic-like." What the Linthorst family unearthed in their son's profile and that of many others, and hence the ground swelling of support of the film's message, is instead a rather involved or severe sensory integration disorder (which, is also almost always a part of autism). 

  Further, the scary thing to me after spending an hour over coffee with Linthorst, while he was in Nashville for the showing, is that he believes had his family not intervened so early and vigorously with their son, he would have spiraled into a valid, full blown diagnosis of autism. Which opens yet another can of worms: that of the children being diagnosed increasingly early (which is good!) but that because of early detection and thorough intervention, and by grace the right--yet unknown--combination of genes, loose that label. YET: these children are shown in studies to still manifest some sort of disorder, such as speech difficulties or learning disabilities.

  What Linthorst has probably done in his personal crusade is gotten ahead of scientists in helping to parcel out a subset of autism. Or, rather of autisms (sic). (Plural.)

  Regardless of what you call it...Families. Need. Help. From their state governments. From schools....And, "mild" is a misnomer. 

  To Erik Linthorst, your experience may not be mine, exactly, but carry on. Carry on families of children "autistic-like." Even if it makes me and others in the autism community uncomfortable. Your voice needs to be heard. And...more Power to the Parents!

  On the homefront, our book team wrestled with the situation of the confusing media reports, early week, indicating increased autism incidence figures. We went to press a week ago with our book, From Heartache to Hope: Middle Tennessee Families Living with Autism, stating that at press time the CDC's figures, as of 2007, were 1 in 150. We knew, because of the autism advocacy community that higher figures were to be released, but CDC would not state to me as a journalist and the book's author, before we went to press, what the new figures were or an exact date of their release. Our medical university advisers and ASMT, the beneficiary of our book and our team agreed we weren't going public with the information until...ahem, the fat lady in the CDC press room sang.

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