By Katie Wright
I recently came across a press release from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) about their recent meeting to examine autistic regression (HERE). Naturally, I think this is great; this issue has been ignored for so long. How terrific that a mainstream research body delves into this subject!
For anyone who does not know, my son Christian had a horrific regression at the age of 2. The mainstream medical and autism community could offer no help or insight whatsoever in 2004. The suffering is these medically complex kids is intense, the interventions few and the research on them practically non-existent. If it were not for the help I found from DAN! Practioners my son would still be living in pain.
So I eagerly read the official synopsis of this BSRC meeting. My enthusiasm quickly cooled. It felt like 2004 all over again.
I have researched regression’s causes and treatments almost everyday since my son became sick. I hate it. I received two Masters in Counseling Psychology. I hated all the stats and research methods courses. I thought: “I am going to work with people, I will never need to know this stuff again!” Well now the joke is on me. It turns out I no longer work clinically at all, but devote all my efforts to research. Almost every Mom with a child like mine does the same. We are pretty much in this alone and it is up to us to figure out why our kids regressed, became ill and how to heal them.
BSRC’s recommendations for regression related research includes: eye-gazing coding, on line diaries, eye tracking and EEGs. It could hardly be worse. First of all it is well known, well documented that when children are regressing their eye contact becomes poor. Autism research has been there (invested millions in this already), done that, researched that, reported on that- time to move on. EEGs always sound good but they reveal useful information about 1% of the time. Putting a toddler through the nightmarish processes of a 24-hour EEG needs to yield better results. So few neurologists understand how to look for the very subtle spikes and merely tell parents, “Everything is fine.” Christian had terrible absence seizures. It was actually obvious. He had 4 EEGs. Finally someone found the subtle spikes but guess what there is almost nothing you can do about it anyways. Back to square one.
After that I am thinking, “Where is the proposed research on sibs developing GI disease, night sweats/ night terrors, severe eczema, adverse vaccine reactions…issues all closely associated with regressive autism?” More than any other form of autism, regressive autism is a total body disease: kids have brain inflammation, immune dysfunction and develop colitis like GI disease. Tracking eye-gazing could not possibly be a lower a lower priority. Ask any family.
Does BSRC understand kids like mine at all? Why aren’t there parents of regressive kids on this committee? In the past I have pushed for more parent representation on this body as well as others. Now I see they have appointed Alison Singer to the board. I don’t know if Singer even believes regression exists or how many families she represents. Where is the diversity? Why would the BSBR staff attempt to study something they know clearly little about yet refuse to include parent experts like Wendy Fournier, Jane Johnson, Lyn Redwood? Yes, yes I know some BSRC researchers have studied regression the past and for that I am very grateful. BSRC documented the true existence of regression in 2004. Since then these researchers say, yes regression exists but we have no idea why. Where is the urgency to figure this out?
Why is the BSRC populated mostly by psychologists? When will we finally get past this ridiculous idea that autism is a psychiatric disorder? Where are the parents and the clinicians, the biomedical experts on this committee? Imagine a breast cancer research consortium staffed entirely by men? Not likely, right.
Yes, many of the researchers have done a wonderful job studying the importance of early intervention. That is great. We get it and we appreciate it. E.I is wonderful but the intervention services reality is still dire. ASD kids wait months and months for services. There are waiting lists for waiting lists for ABA teachers. Inclusion nursery schools are almost impossible to find. Like so many parents I had to drive over an hour away each way to therapists and pay out of pocket for the majority of my son’s services. Too many parents are killing themselves doing everything possible and not enough kids are making significant progress. Serving kids living now with autism should be a research priority. BSRC needs to invest far more energy and resources into interventions for children living with autism today.
I started googling the committee’s principal investigators. This search leads me right to autism research’s deepest darkest ice age. Dr. Joseph Piven, BSRC committee member, recently gave a speech to families and professionals. Piven dug out an ancient quote to share with the audience: “autism Dads are aloof, rigid, hypersensitive…they are obsessive, detached and humorless…they are not original thinkers.” And we are paying for this guy’s opinion? Is Piven 100 yrs old? Did I mention Piven has a 9 MILLION dollar NIH grant to study, wait for it… brain imaging? Naturally, there are a half dozen professional eye-gazers from Yale on BSRC, as well as Cathy (queen of the stone age) Lord. Lord recently expressed her dislike of the IACC plan stating that there was undue emphasis on environmental factors! Right on, another ice age academic with her finger (not) on the pulse of the autism community.
How ironic that as all autism orgs are working hard to obtain stakeholder seats on IACC, BSRC is still a closed shop to families. There is just way too much insularity on this committee. These scientists are all pals, known each other a long time, pretty much hold the same belief systems and don’t have a child with autism. Not one parent of a child with actual regressive autism was allowed to be part of their deliberations. Insane.
Check out the authors of some of this team’s articles on PubMed. It reminds me of the producers’ credits on “Entourage.” There are like 20 authors on most of their publications. They are largely the same scientists serving on BSRC.
BSRC’s goals for last year included more head measurement data gathering (God spare me now!) When will be move on from this one? Brain inflammation causes the overgrowth of myelin. Let’s move on to what is triggering the inflammation! Another goal is to “make progress on treatment” what the heck does that actually mean? And finally BSRC wants more data banking. Good grief not more data banking! Where is the community input? Where are the concrete goals? Where is the accountability? Where is there any outside critiquing of this committee’s progress?
Finally in the report’s acknowledgements this group excessively thanks EACH OTHER for all their hard work. It gets to a point when academics who work together for a long time, isolated from community input really, truly start to believe they are working for each other. They thank each other, they thank the NIH, they thank the grad students, but you know who they didn’t thank- autism families and kids? I am sure it never occurred to them.
Katie Wright is a Contributing Editor for Age of Autism.