OK, as usual half the IACC members were absent at roll call. I cannot understand this. Anyone on IACC lobbied HARD to get that seat. Just show up, already? Not too much to ask, right?
The composition of the public members is so bizarre. Why is James Ball still on IACC? James said like four things last year and although Ball has an ASD child he no longer represents any ASD advocacy org. There are oo many free agents masquerading as public representatives at IACC.
In the past, when most IACC reps left the org they were representing, they had the decency (Simons) to vacate their IACC seat so that a new member could be nominated. But not Dr. Rob Ring! Ring left/was asked to leave/ Autism Speaks. Ring has zero clinical expertise about autism. Ring has zero affected family members with autism and Ring has not been involved with any autism org for over 6 months. Ring describes his credentials as the former head of “Autism Medicines” at Pfizer. Well they never developed any “autism medicines” and closed down that unit.
Ring’s contributions to AS include dozens of hugely expensive and failed endeavors: Seaside, PACT, endless eye gazing studies and my personal favorite: paying a Frenchman almost half a million dollars to do study outreach to Latinos in Portland, OR. Just end it Ring, please walk away, do yourself and everyone else a favor and move on.
ABLE ACT was passed, that’s great news. Avonte’s Act was also passed, terrific. More federal efforts are being made to accommodate ASD in the workplace, nice.
Wendy Fournier, president of the giant ASD org NAA gave an update on wandering issues. We all owe Wendy so much. Wendy Fournier has single handedly pioneered this issue by bringing it to IACC’s attention nonstop over the past 5 years. Wendy has been a tireless advocate for Avonte’s Law. Only because of her efforts did IAN finally agree to do the wandering survey. Wendy Fournier is one of the m hardest-working and most efficacious advocates in the ASD community AND she represents a giant autism org. However, the NIH has denied Ms. Fournier a seat on IACC for almost 10 consecutive years. Shame on you Tom Insel and company.
John E. Robison deserves his own paragraph in the “good news” section. I never want this guy to leave IACC. An HHS representative (annoyingly her name and title was not listed in the agenda and I only caught the woman’s first name, Melissa) gave an insanely complicated and nonsensical speech on why there are so many limits on where federally funded ASD group housing can be located. This woman talked in circles for 15 minutes. I will summarize:
“Transitional period…operating agencies…mental illness assessments…level the playing field…minimum floor criteria…5 year transitional analysis… congregate settings…non congregate settings...no definition of community integration…multiple state analyses.”
I defy the most engaged autism advocate to make sense of the speech. I tried hard to listen but my brain segued into a state of highway-like hypnosis after the first five minutes. I saw the speaker’s mouth moving but fell into a trance, transfixed by her rapidly gesticulating hands.
Melissa was allowed to speak for more than 15 minutes! The double standard really irks me here. An HHS person goes 10 minutes over time but a member of the public is cut off after going 1 minute over. Come on Dr. Cuthbert, as the person in charge, you should have jumped in and stopped that crazy speech within the first 10 minutes.
After the bizarro ramble, the wonderful Samantha Crane countered saying that she heard a lot of excuses for the segregation of ASD adults and nothing about efforts being made to foster their integration into a community. Honestly, I was just really impressed Samantha understood that much out of the lecture. John Robison totally blew his stack after the HHS housing speech and said, “ I have listened to you (Melissa) for 15 minutes and still have NO idea what you are talking about.” Me, neither! “How on earth are families caring for young autistic adults supposed to figure this out? ” John accused the HHS of making it excessively and unduly difficult for families to find a good living situation for their ASD adult family members. Thanks John.
John Robsion spoke eloquently of lifespan issues. He expressed frustration at the NIH’s failure to invest in essential quality of life science. For example, seizures are the number one cause of premature death among people with ASD but to my knowledge IACC has yet to focus on any epilepsy treatment research (genetic pathways fishing expeditions don’t count). People in our community may define quality of life in many different ways: a good college experience, the ability to live independently with supports, a fair IEP, to be toilet trained, a decent night’s sleep….However, we all agree that staying alive is the ultimate quality of life issue. Without that we’re nowhere, yet the NIH seems strangely unconcerned with this issue. The NIH has got to sponsor a Charlotte’s Web trial for ASD people with intractable epilepsy. A life expectancy of 50 for ASD people with intractable epilepsy is shameful.
Many of the IACC papers cited as 2015 “Breakthroughs” in autism science amounted to a ham-fisted #$&*#@^ you to autism families and out concerns. First of all the nakedly politically aggressive nature of some choices is an embarrassment in and of itself. The low quality of many of the chosen studies serves to underscore that politics, not quality or innovation, is what matters to the NIH regarding autism science. Here are some of IACC’s 2015 “Advances”:
- Endless, endless baby sibs regurgitation which helps no one and offer NO new insights. Training a parent to “deliver” an intervention is better than NO intervention at all. I know, brilliant!
- You cannot be sure a child is ASD until the 24th months of age. No kidding, its called regressive autism
- Screening for autism in baby sibs IS a good thing. Wow, I know, the insights keep coming!
- The feeble Hewtison study. This poor woman’s career had been destroyed because of her earlier Hg work and now she has done a 180-degree about face. It's sad but it happens. Lots of people (not to say her, but in general) want their careers back after such an experience. This pitiable study found that six monkeys (that’s right – all it takes to be a “breakthrough” at IACC is 6 monkeys) given Hg did not exhibit “significant” (but did exhibit some) ASD behavior. Naturally, this tiny study was chosen as one of the BEST of all of 2015 by the IACC hacks.
- The slipshod Neuschaffer vaccine study is listed as an IACC favorite, of course. This study’s hypothesis was a good one: test if ASD baby sibs who received MMR had the same rate of autism as older ASD sibs who received the MMR. But did the investigators study kids who received the MMR on time and according to CDC schedule? No. All American kids are supposed to receive MMR, chickenpox, Hib, Hep A and flu shot at 12 months. That is the way my son was vaccinated and I bet your ASD child as well?
Well what did Neuschaffer ACTUALLY study? He examined ASD siblings who received the MMR alone between the ages of 2 and 5!
Oh my God, if I could go back in time and give Christian the MMR ALONE at age 5, instead of in tandem with 4 other vaccines at age 1, it would be a dream come true!! Sign me up! In real life, which was not examined in this study, doctors inject a 20 pound person with four live viruses plus three preserved viruses plus a plethora of toxic preservatives AT ONCE. That creates the adverse reactions so common in ASD kids. Too bad Neuschaffer studied a fantasy-based MMR administration (alone and at age 5) rather than reality based MMR administration.
Newuchaffer included kids who got MMR, alone, at age 5 and compared their outcome to the kids who received 6 vaccines at once at 12 months. It is absurd, right? Yet another example of the political double standard in autism science. Lousy compromised science rife with misrepresentations is “breakthrough” research as long as it reaches a polictally correct result.
The Neuschaffer study is so botched that the authors were compelled to issue a correction – admitting that they did not study children who followed the vaccine schedule nor did they study kids who received the MMR at 12 months old, as they should have if they claim to be doing a true outcome comparison. It is like doing a study on smoking and comparing the outcomes of people who smoked for 2 years vs. those who smoked for 25 yrs and concluding the health risk is the same.
So there you go autism families, and dozens of ASD parents who read their public comments to IACC. IACC took those comments and said, ”I don’t care about what happened to your child. Here is some lousy research proving how little I care about your child’s autism, &^%(* you!” The inclusion of such politicalyl charged, substandard science in the “breakthrough” column is so juvenile and transparent. And this crowd wonders why consumers are so angry with them?
In Part 2 I will report on some of the brilliant public comments and on the IACC “round robin” discussion.
Katie Wright is a Contributing Editor to Age of Autism.