Saturday, April 18, 2009

Strong Current, Narrow Channel

I am really interested in a rather unexpected (to me) and quite possibly major shift in the course of autism research funding and guidance that was announced today.

The Autism Science Foundation launched its existence and posted a website today, amidst significant media hoopla and statements made by several important directors and members.

You will, of course, see numerous analyses of this new development over the next few days and weeks. Here's mine: I hope they dedicate themselves to research with tangible benefits to autistic people today and in the future.

The people involved (founding members? Board of Directors?) could not be a more interesting ensemble. I find a lot to like, and frankly an equal amount that makes me nervous.

Begin with Allison Tepper Singer, the former Executive Vice President of monolithic autism charity Autism Speaks, who co-founded the new org with Karen London, formerly of NAAR.
Ms. Tepper-Singer uttered one of the most notorious lines heard in autism documentary film history when she expressed her urge to drive herself and her daughter off the George Washington bridge - with her daughter in the room with her. This, as some will recall, was an early rallying point of the Autism Hub itself - a galvanizing moment that some of the original Hubbers might tell you went a long ways towards cementing the Hub's eventual activist-style approach to controversial issues.

Allison Tepper-Singer left Autism Speaks last fall over a hubbub relating to an IACC vote over funding vaccine research. She stated that her intent to vote against further research in that area clearly opposed the will of the powers-that-be at AS, and resigned as a matter of principle. The new org's initial media statements assert a continuation of that foundational belief:

The Autism Science Foundation's mission is premised on the following facts and principles:
  • Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
  • Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.
  • Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

I agree with the entirety of that triumvirate of statements, though they do fall short of covering the full range of things I'd like to see flow from our scientific community for autistic people. Its a heck of a start, though, and provides a spectrum (ahem) of goals that can be worked towards.

Also on the Board of Directors is one Dr. Paul Offit. I was extremely pleased to see Dr. Offit's inclusion with this new science group, as he has certainly earned his stripes in the vaccine-autism conflict and has emerged as a knowledgeable leader with great perspective on the science, the media's interpretation of the existing science, and the (quite frankly) dark nature of the more extreme anti-vaccination autism activists. Dr. Offit's book, "Autism's False Prophets" should be required reading for all young parents worrying over vaccinating their kids, for parents of young autistic children who may be considering some of the more dangerous, bizarre, or expensive snake-oil treatments sold as autism cures these days, and for any and all members of the medical and treatment communities that relate in any way to vaccines or autism. Furthermore, Dr. Offit's inclusion, as well as the bold and direct vaccine-related statements made by the Foundation, provide clear focus for their donors and decision-makers, eliminate the political minefield that is vaccine/autism debate, and further marginalizes Generation Rescue (a group that doesn't seem to stay on the fringe despite its junk science and vulgar set of personalities).

Further perusal of the Leaders of the Foundation turn up some other very interesting names.

Catherine Lord is considered to be perhaps the pre-eminent expert in autism diagnostic issues. She is the developer of the Autism Diagnostic Observation Scale (ADOS) which is the most well-supported diagnostic tool currently used. Interestingly, she is (or has recently) released an ADOS-I for infants. When my son Baby C was diagnosed back in August at age 19 months he just missed the release of the ADOS-I.

Harold Koplewicz is well-known around these (Autism Hub) parts for his leadership role in the Ransom Notes campaign, which was utterly despicable. It took tremendous media pressure for him to accede that the campaign was misguided and harmful, but ultimately he did just that. At the time, I recall feeling stunned, in that he essentially owned up to a mistake that totalled probably to the tune of several hundreds of thousands of dollars. He then initiated a series of town-hall meetings to hear more from the ND community - in coordination with Ari Ne'eman as I recall. I'd like to hear from Ari as to what he thinks we might expect from Dr. Koplewicz' involvement with the Foundation.

At the risk of downplaying their obvious strong credentials, I'll omit going into detail on each of the other members. Suffice it to say that I am just fascinated looking at the group that has been assembled, and I feel they have established an extremely strong group to help guide research.

Bottom line, folks, is that autism research is a rushing river these days. It is a strong current forced between two steep banks forming a very, very narrow channel of success. As I have grown weary over the past few years of watching the constant grind that is the vaccine-autism war and its resulting removal of resources towards truly benefitting autistic people (especially those needing more assitance than my own children), I can only begin to guess at the frustration felt by well-meaning researchers, science leaders, and most importantly autistic people and their loved ones. Here is One Dad's Opinion - no, hope! - that the Autism Science Foundation is successful at navigating that narrow channel.

Friday, April 17, 2009

Forms of Communication

Autism is a diagnosis made by observation. Specific behavioral criteria are set forth in the DSM-IV-r and the ICD-10 that are used to define the disorder.
It has been my experience as someone who has now met numerous autistic people of many ages and, more specifically, is a parent to two young autistic boys, that any attempt to boil down such a vastly complex thing as human behavior to a 12-point checklist is an exercise in futility. At the same time, I respect the need to have a "neutral" description for autism that can be referenced universally.
Autism, moreover, is described now as a spectrum. By definition, this means that the Autism Spectrum Disorders include Autism Disorder, PDD-nos, Asperger's Syndrome, CDD, and Rhett's Disorder. I have come to recognize that 5 "classes" of ASD are probably not enough, though I think they satisfy clinical needs for the time being.
What I have come to realize over time is that mini-spectrums exist within each category that is used to describe autism. Here is the official list of diagnostic criteria for Autism from the DSM.
To illustrate my point, take item 1.a., which reads:
"marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

In the case of my older son, this category would describe his former tendency to emphasize use of peripheral vision over direct gaze. Or his habit of dropping small objects from his forehead down to the floor so they would rapidly pass through his field of vision. To this day, he still points using his middle finger (awkward in western society to be sure). He frequently touches people's faces to get their attention - a definite faux pas for someone over the age of 3 or 4. My youngest son does none of these things. Instead, he does things like walking with only one arm swinging in time with his gait. Or always averting his gaze when he is handing something to you, but stares right at you all other times. He regularly scrunches his cheek down towards his shoulder, his head askance. Point being, there is a huge range of things that classify as item 1.a. Exponentially apply that variance by a factor of 12, and you might begin to sense the range of autistic individuality.

Which leads me to a story about my oldest son, J. This story strikes me as a great example of how subtle, but at the same time stark, differences can be. This specific instance relates to communication.
J has armed himself with some pretty strong communication skills over time. But one must at times set aside convention when understanding J's particular way of approaching things.
Last week, my wife L was busy around the house when J approached her and tapped her on the shoulder. "What is it?" she said.
"Did you hear something?" cames J's reply.
"No - why, what do you hear?"
"I think it sounds like Thump-Thump-Thump!"
Puzzled now, L asked him where he had heard that. Where was it coming from?
J poked rapidly at his chest. "I think its my heart."
Mildly alarmed, L asked "J, honey, is your heart thumping? Are you okay?"
"I think its because I am nervous to tell you somefing."
*Sigh* "What do you want to tell me?"
"Well ..... tsk .... well .... IthinkItouchedthechairanditkindoffelloverinthekitchen!"
L, of course, was relieved on several levels that this minor thing was the cause of J's guilt trip.

Point being, this is a highly atypical and roundabout approach for a 7-year-old kid to take. But it is J's particular way to do it, and we embrace that. Time will tell how Baby C develops his own style of communication. No doubt it will be other than typical. Equally doubtless is that it will have his own personal stamp on it, and that we will strive to support him in his efforts to develop it.

Thursday, April 16, 2009

A PSA I Can Support

Many of us in the autism community are constantly appalled at what passes for "awareness" these days. There is a near-constant barrage of negative publicity regarding autism. I have seen TV ads that create a metaphor between autism diagnosis and automobile deaths in young children. PETA got in on the party a while back, and I wrote about that. Autistic kids are framed as 'monsters' in a recent campaign in the UK. Of course, there was the infamous "Ransom Notes" campaign of last year. So I expect you'll understand that I cringe when I see another Autism PSA coming down the turnpike.

This one is different. Many thanks to the Dan Marino Foundation, Ari Ne'eman and ASAN for doing a great job with this one. I hope there is more to come from this coalition.

Of course, there are other positive awareness activities going on. Here is one very good example:
Autism Awareness Video by Bev

Thursday, April 2, 2009

World Autism Awareness Day

It occurs to me that today is World Autism Awareness Day.

As a means of commemorating this day, I think after work I will go home and be acutely AWARE of how I am the luckiest guy in the WORLD to have the family that I have been blessed with, and that family happens to include two AUTISTIC sons.