Dr. Cook. Thank you, Mr. Chairman, for the opportunity to testify on the topic of autism. I am, as some have before, speaking as someone wearing three hats--actually, first, as the brother of the late Kenneth Wade Cook, who had many of the problems of children and adults with autism; I am also speaking as a child and adolescent psychiatrist who cares for many patients with autism, and as a biomedical researcher trying to increase our knowledge of the causes of autism and, above all, to try to increase our ability to treat this devastating disorder. It starts with me recalling being an 8-year-old boy with a 2-year-old brother who my family had just realized was not developing normally. I remember vividly the pain of my parents. I further recall that we went to a meeting where, to my recollection--I will not speak for my parents--we were told that it was known from theory about what was known of the brain at that point that ``patterning,'' a way of moving the arms and legs, a special diet, re-breathing through a mask, and related methods still practiced today in various forms, would cure his problems. I remember our family being skeptical from the beginning of that meeting. However, by the end of the meeting, we and the other families in the group were sold on this treatment because it was too painful to accept what we knew was happening. If there is anything I have not forgotten, it is that hope is something essential in working with children with severe challenges--for the children, for the families, and for all of us. I am very thankful to those who were interested enough that far back in children with developmental problems to have spent so much time with my brother and my family and to be with us. They knew that providing us the tools to work to teach my brother the basics of communication and motor skills was very helpful, and I suspect that many of them were practicing this method for the same reason we were--they simply had to try. I could complain about the 5 a.m. mornings in which as a child, it was physically exhausting to perform the patterning, but I am sure it was good training for being a physician- scientist, or perhaps a Congressperson. However, I am not pleased that there was not more time spent teaching me to play with my brother instead of trying to teach him to read just to show that their method was working, when it was not even close to being an appropriate next step. Our family learned to accept and love my brother deeply. I would like to add that at this time, the preferred professional response was to tell you to put your child away at birth. And some of our increased awareness, I am afraid, actually positively, is that we do not simply ship the kids away. We felt sort of like we were going against advice to keep him in our home, which we did for 10 years. I am very thankful that children today have more opportunities for education due to congressional legislation. Excellent community support and model community support in St. Louis was vital to my family during my brother's last year. Mostly, I miss him deeply, since his death remains as unexplained as his original problem, although the two are certainly related. It reminds me that not only is there much suffering, there is also death with this disorder. Obviously, I am also a physician-scientist because I cannot accept this, even after he is gone. Having several hats, as brother, physician and scientist can be extremely painful. I recall my anger as a child when investigators found that patterning was not effective. As it turns out, I collaborate with people at the same institution at Yale today--but I wondered how could they do such a thing, and how could I now be in their shoes, now that I have studied secretin and have failed to find that it is working as much as initially claimed. The only thing in my defense, frankly, fighting myself here, is to say that I actually shed a tear when the data were analyzed for secretin, because even though at the bottom of it, there is not a lot of plausibility, I do not care--I deeply wanted this to work. And that is probably what my anger is, that all these things have not provided what they say they will, and I am the first one who wants them to work. So our laboratory, not being satisfied with the status quo, has worked on neurochemistry, neuroendocrinology, neuroimaging and neurogenetics of autism. The reason for our current focus on genetics is the data, not our impressions or our wishes, show it to be the most powerful influence on the etiology of autism--and many have been studied carefully--maybe not carefully enough. It is not the only influence--I would agree with what has been said several times--it is certainly not the only influence in autism, and it is certainly not a simple, single-gene disorder. If it were, we would know for sure what that single gene was. However--and this is very important--it is a rare event in my lifetime to realize that suddenly, molecular-genetic study of autism spectrum disorders provides one of the best scientific opportunities in medicine. I must say that usually throughout my career, I have had my passion, and my colleagues say, yes, it is very important, but there is no scientific opportunity; we cannot learn anything there. In genetics, we are actually ahead of most other medical disorders when we study autism. In terms of why study genetics of autism, I think it is unlikely--and I would have said this before recent events--that gene therapy will be the result of genetic research in autism. It is also unlikely that genetics of autism will explain a relatively recent increase in measured autism prevalence. The point of genetic research is to develop treatments that will correct the missing or abnormal signals for a small set of nerve cells in the amygdala, hippocampus and cerebellum so that the nerve cells mature. I very much agree with those who are optimistic on this point. These are not children who have brains that cannot further develop. That is my view, but it is a view as a scientist. You do not see the kinds of changes in the brain that would make things not able to move forward. If we knew the signals, what has long been a too complicated puzzle of autism would become simple enough for us to understand. We are all challenged in a sense in trying to make sense of this. So although the simple idea is to provide gene therapy, oral delivery of more traditional small molecules, which we usually refer to as ``medications,'' is likely to be more feasible and preferable, partly because there are few treatments that we have not wanted to take back. That is certainly something that I have learned as a physician--I try things, and they make sense, but if they do not work, it is time to stop them. Two recent developments in the broader field of developmental disorders show that complex situation may be better understood through molecular genetics. The first is the finding of the gene for FRAXA, or Fragile XA mental retardation. This is very relevant to autism since a substantial proportion of children with FRAXA have autism spectrum disorders. Although one wishes knowledge of a gene will lead to new treatment sooner, the results of a decade of research in FRAXA to understand the mechanism of this disorder is leading to an almost exponential growth in understanding complex interactions of molecules in the process of learning. Mentioned earlier, which is actually quite historic, was the recent finding of the gene for Rett syndrome, because this is actually finding a specific gene for an autism spectrum disorder. It is notable that it is caused by a single gene, MECP2, but that it has a course of regression in social behavior and communication between the first and second birthdays. Knowing the gene has led to a breakthrough in the systematic approach to investigation of Rett syndrome in terms of how it affects the development of the brain, and this is already moving us forward. Although we do not know the specific genes involved--and I would agree with that, and it is definitely something that is personally frustrating today--several groups have been finding evidence that an extra part of chromosome 15 leads to a high risk for autism, especially if inherited from the mother. Believe me, based on the history of autism, if I could have it come out another way, I would; but this is simply the origin of the chromosome and has nothing to do with the mother's behavior, as the theory went in the past. Although this is responsible for less than 4 percent of cases of autism, these 15q11-q13 duplications, like Rett syndrome and FRAXA, are helping us understand autism with regression, because all three of these often have this as a component, more generally. Several laboratories including our own are searching for a gene in this region. As an example of our concern in genetics about not wanting to waste precious resources, the probability at this point of there not being a gene in this region is about 5 in 100,000 with the most rigorous blinded studies. But we are not sure yet, and that is just the way it has to be, because we may expend our resources in the wrong direction. We are close to sure at that level. Of course, the problem is that we will have to get beyond regions with likely autism genes to actually finding the specific changes and then getting on with the work of using the information to improve treatment, because that is the point. So it is a good thing there are people doing excellent clinical research and trying to improve educational and other interventions while we are working out the fundamental causes, with many others. However, it is important not to think we have more of an effect than we can back with controlled data. The history of autism teaches that zeal without skepticism may have negative consequences. The first was blaming mothers, and the second was false accusation of fathers of children with autism of abuse when their children were undergoing facilitated communication. That was probably the biggest problem that we had last decade in terms of things that, on their face, should not have bad consequences but did. The challenges of autism research are obvious. In terms of needs, I mostly want to thank Congress for the appropriation of increased funds for biomedical research generally. All of the pertinent NIH institutes are now actively engaged in the support of autism research. A simple statement of needs is that there are many important and feasible questions about autism not able to be asked with current resources. There are not enough well-trained researchers in the field, partly because, in spite of the figures that they have increased, I question that it was much more than zero 5 years ago. Most importantly, questions that are being asked efficiently, such as in the area of molecular genetics and others, are not being answered at an optimal rate given current funding in this area. That is not OK for me, because my patients are aging with me, and more are being born. Again, I am not criticizing the funding but appointing a statement of scientific opportunity that we do not want to miss. I thank you for the opportunity to communicate.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.