The majority of researchers serving on the NIH Regressive Autism Workshop Panel were remarkably unacquainted with regressive autism. Most participants seemed to be only tangentially engaged in this subject. Instead of parents with regressive ASD kids and clinicians like Herbert, Frye, Jyonouchi, professionals who successfully treat kids with regressive autism everyday, the NIH regression panel was stacked with experts in Retts, eye gazing diagnostics, animal models, social psychology and of course (!) genetics. None of the participants seemed familiar with recent very promising autism immunology research. So much time was wasted time asking questions that have already been answered. Even worse so much time was wasted on the extensive discussion of irrelevant scientific issues and conditions.
I am baffled by NIH panelist choices. NO stakeholders involved in any way. No toxicologists, no clinicians…But let me tell you what the NIH Regressive Autism Workshop did offer: an expert in ferret biology! Seriously, a ferret scientist was given a starring role at the regressive autism workshop. I couldn’t make up something so preposterous if I tried.
But listen, I don’t want to blame the ferret scientist. She has never done any autism research but was invited so she showed. Ferrets aren’t the enemy! I like ferrets, I had one as a pet. But why go there when so many incredible scientists who already have great animal models? I bet no one on that panel has even seen Dr. Derrick MacFabe’s “ASD/GI” rat films. His autism animal models are terrific. Rats are a comedown from ferrets, I get it, but MacFabe’s animal models are the best around.
NIH leaders take an almost psychodynamic perspective to autism. Half of the panel discussion revolved around endless learn the signs, eye gazing, face processing, social psychology and other minimally valuable autism research. The NIH must make the connection that recognizing signs of autism does not = treatment, causation information or prevention. It is step 1 out 100. We know the signs, we know the signs, we know the signs and we know what poor eye contact means. We also know it is 2016. The NIH must stop pouring millions upon millions of our research money into face gazing. It is horrendously wasteful.
As part of the psychodynamic/ genetics only paradigm, conference organizers excluded all experts in environmental science and ASD. Incredibly the NIH did not ask one ASD environmental scientist, not a Dr. Van Der Water, not a Dr. Hertz-Picciotto to attend. SO much exciting new regressive autism revolves around the immunology of autism, yet no sign of that on the NIH panel. Forget it, they needed those seats for face gazers and ferret specialists!
Not content to parade their lack of understanding of regressive autism, the NIH panelists insulted affected families in the process. When Dr. Jason Wolff, the only lecturer who shared novel data, spoke repeatedly about “something happening” in the brains of toddlers who would go on to develop autism. Dr. Wolff stated “something happens between 12 and 18 months.” Some conference attendees attributed the loss of skills to “deprived” environments. It is one thing to be ignorant of regressive autism, yet another to blame parents. I remember thinking to myself at the time, “people blurt out stupid things in a moment, things which they might not mean. Others on the panel will correct this person now.” Nope, no correction to this absurd conjecture, just a lot of vigorous nodding in approval!
Great going NIH- bad parenting = autism. Nice way to bring Bettelheim back from the dead. I love how speaking about vaccine injury is forbidden at the NIH, but blaming parents as the cause of their child’s autism is just fine. So much of the discussion was crazy making.
The desire of some researchers to force fit regressive autism into a genetic phenotype was excruciating to watch. The arguments were unsupported and clumsy. Repeatedly participants threw out specious claims that 20% of people with regressive autism have a genetic cause. I want to see that footnote! Naturally none was provided.
Recent research has called into question whether most FX /ASD kids have been falsely diagnosed with ASD. Most importantly, the rare genetic syndromes are such poor models, absolutely awful models, for regressive autism. Regressive autism is an environmentally triggered multifactorial neurodegenerative disease with a postnatal onset. FX. Retts and TS are simple single gene diseases that occur the moment of conception.
A better comparison to regressive autism would be Alzheimer’s Disease, a disease, we have recently found, is also largely immune mediated.
Decades of dead end “autism” FX, TS and Retts research have not helped one child with autism, nor has this research prevented one case of autism. Please, let’s move on! Study our “typical” regressive kids for a change! Study ASD kids without chromosomal abnormalities who develop typically and then regress into autism. Talk to those parents, get the children’s medical records, examine all environmental exposures (neither Baby Sibs nor EARLI is doing this). Talk to parents about the onset about their child’s chronic illness and interventions that have helped and not helped.
Undeterred by their non-stop failure, most in the field still insist on pushing the “genetics first” science, science that ASD families do not support. Dr. Charles Nelson of Boston Children’s has been the recipient of tens of millions of ASD research dollars. Dr. Nelson spoke at great length about the minute details of extremely rare, wholly genetic diseases. None of what he shared was relevant to regressive autism. It was torturous to sit through. In cause you are wondering, here are some of Dr. Nelson’s other ASD research passions: eye gazing, atypical face processing, maternal gestures, maternal depression (blame mom!), maternal vocal feedback (continue as noted), face processing, atypical processing…I mean this body of work is like a wasteland of our ASD research dollars.
Now THAT is the NIH autism conference I want to have next! A conference on forensic accounting of ASD research monies! Why has there been so much waste? Why so many go nowhere multi million dollar projects? Why aren’t the biggest ASD stakeholder organizations like TACA & NAA involved in selecting grants? Who is accountable for green lighting so much pointless failed research? How are these grants chosen? Can we get the money back??
The work of Dr. Jason Wolff of the Univ. MN provided the one truly bright spot of the conference. Finally, novel, relevant and ground –breaking autism science!
Like many of you I suspect, I’ve have had it with brain imaging projects. There seem to be dozens, if not hundreds, of almost identical very expensive ASD brain imaging studies. However, Dr. Wolff’s study = research funds well spent. Finally really exciting POSTnatal science! Wolff stated empathetically there is no autism genotype. Additionally there is considerable data proving some forms of autism are, indeed, POSTnatally determined.
Dr. Wolf found ample evidence of dynamic and dramatic changes in the postnatal brains of babies who went on to develop autism. Babies who become autistic often began life with highly active and highly connected brains. Their brains have higher levels fractional antitrophy. The babies also have larger than average corpus callosums. These children also had more active than usual corpus collosums. According to scores of studies, these measures indicate a higher than average intelligence.
However adults with autism have much smaller than average CCs. Makes sense, the damage has been done.
As Dr. Wolff repeatedly said, “something IS happening between 12 and 18 months,” to these toddlers. I think we all have our guesses! Well I know what happened with Christian, at least. Wolff’s work perfectly dovetails the innovative work of Dr. Richard Deth and Dr. Jill James on ASD and redox . Deth found, so tragically, that the kids who developed regressive autism appeared to have the most connected brains, very likely to be highly intelligent. These delicate, excitable brains are extremely sensitive and suffer extreme reactions to environmental toxins. We are literally mentally disabling our best and brightest.
But what I found most disturbing about the workshop was the near absence of humanity and compassion. At its very essence regressive autism is about a child losing all the skills and abilities that are necessary to lead a fulfilling independent life. These children lose their speech, gross motor function and even the ability to eat and sleep like normal human beings. Some lucky children regain all the lost skills, but most do not. Regressive autism is a catastrophic loss for the child, the child’s traumatized family and our country. It costs a lot to have regressive autism. Additionally the majority of these children have epilepsy, serious GI and immune diseases and most remain profoundly disabled all their lives.
Yet at no time did anyone on the NIH panel express compassion or a sense of urgency to help these children. Instead there was an odd impassivity. Great consideration was expressed from one researcher to another one, but not towards the families they serve. It was as if this workshop was not about human beings at all. I understand that many scientists are not intuitively empathetic or emotionally expressive but does it really take a high emotional IQ person to actually care about helping severely disabled kids?