By Katie Wright
Congratulations to the New York City chapter of the NAA on a terrific night featuring Dr. Andrew Wakefield! The room was packed beyond capacity. It was so gratifying to see the word about the meeting had really gotten out. The diversity in our community is one of our biggest resources. Attendees included doctors, nurses, Wall Street parents, homeopaths, corporate lawyers, chefs, stay at home parents, professional autism advocates, parents from the Orthodox Jewish community, Pakistani grandparents physicians/ NAA directors, journalists, vaccine injured adults, skeptics, teachers, researchers, authors, ABA therapists…So much for the conjecture that we are all a group of dumb like minded automatons takings orders from our new age, anti-government conspiracy theorist leaders. Aside from autism, the people in that room don’t have much in common or time for conspiracies, they are too busy struggling to make their kids healthier.
Dr. Wakefield was terrific, happy to answer any question. No one knows the subject of GI disorders and autism better. He took no umbrage at skeptical questions and responded respectfully and patiently. What a contrast to groupthink plaguing IMFAR scientists! So many professional academics avoid parent groups like the plague (maybe they can develop a vaccine for that?), terrified of the questions they will be asked, preferring to stay in their safe, hermetically sealed academic world. When I made a challenging study design enquiry at IMFAR the response was a blank nervous look and the announcement we were just about out of time for questions.
Wakefield spent some time discussing the emerging and frightening macaque monkey research undertaken by Dr. Hewitson. The study was published earlier this week. It is the ONLY study on vaccinated and unvaccinated primate groups. The results are devastating. The combination of adjuvants, live and preserved viruses and our very aggressive infant and child schedule is causing GI disease and brain damage and autism- like symptoms in the monkeys. Unlike previous vaccine studies, this study was NOT financed by a vaccine company, no one from the Hewitson team sits on a vaccine company board, no one will be earning money in relation to the study’s outcome and no one who holds vaccine patents or determines our immunization schedule from the CDC or NIH played a role in this research. The Hewitson paper is exceedingly impactful because it is very rare example of truly independent, unbiased vaccine safety research. So thank you so much for to Dr. Hewitson, her courageous collegeages and all the donors.
As we viewed the slides the audience did not look surprised, only sad. Seeing the vivid PET scans of a vaccinated monkey’s brain vs. an unvaccinated monkey’ brain tells us what we already know, yet is still devastating to see. The brains of the exposed monkeys exhibit a clear pattern of maturational decline. The lights in the house are literally dimming, similar to Alzheimer’s.
As always, in our community of families, the Q &A period included a raucous debate.
Everything from the sudden onset of colitis like symptoms to regression, accusations we anti- vaccine, response that we are safe pro vaccine, post vaccination febrile seizures, crippling GI pain, dietary interventions, bad research, the importance of pediatric GIs to scope the terminal ileum, reflux, dealing with chronic immunological problems and esophogitis were discussed. These subjects- are also known as everything that most autism researchers have ignored for the past 20.
Naturally there were skeptics in the group, which is normal and expected. Diversity is a beautiful thing. A young journalist asked, “What do you say to parents of kids who died of vaccine preventable illnesses because of you?” Any child dying is a terrible tragedy and I cannot even imagine such pain. The question, however, is a common one and represents a great opportunity to respond to the false choice: if we question the safety of our immunization schedule everyone dies!
Please, don’t we all have enough drama in our lives already? The best way to protect our children from infectious diseases is to perform truly rigorous, independent safety trials on both the adjuvant combinations and the effects live and preserved viruses on an infant’s developing central nervous system. Amazingly, this has NEVER been done. How about regaining the public’s confidence by making safer products, rather than bullying consumers to buy them! A novel concept I know, but common in the world in which one’s products are not protected from indemnity. We all want our children protected for horrible diseases but an increasing number of parents are unwilling to risk brain damage for such protection.
Sadly, if a vaccinated child gets the measles we need to take up that failure with the vaccine makers. Parents of autistic kids are not privy to the inter workings of vaccine companies.
That question reminds me of the argument against talking to teens about birth control. Some people fear that a consequence of learning this information teens will immediately have sex, contract venereal disease, get pregnant, possibly get AIDS and die. That is a false choice. The real danger is in ignoring the problem and hoping it will go away. And guess what, we have the industrialized world’s highest rate of teen pregnancy.
Dr. Wakefield empathasized the important role vaccines play in our health care system. Wakefield, like the majority of American parents just want to see comprehensive, independent vaccine safety research. Would the undertaking of such research really result in death for us all and the end of civilization, as we know it? Surely not, but why does the AAP and the CDC behave as if that is the case? Shouldn’t safety be more important than fear of the truth?
For Pete’s sake Viagra was almost recalled because of rare adverse side effects. Viagra is literally a gratuitous, nonessential drug taken by fully consenting grown men. Viagra prevents no diseases and is in no way required by any place of work.
Nevertheless, the FDA almost recalled the drug until all possible adverse side effects were re-studied clearly marked. Meanwhile we continue to throw the dice by giving newborn babies shots for sexually transmitted diseases with no regard to how these viruses are affecting babies’ brains. This is the United States of America, not sub-Saharan Africa. We need not continue injecting our children with copious grandfathered toxic adjuvants at a breakneck pace as if the plague was just around the corner. We need to get vaccine safety research done, and done well done.
I am frequently told that science moves slowly and that it would take too long to get these answers. Science seems to move slowly because there is little will to move quickly. Yet when scientific institutions spend our money, wow do they shift into high gear! You might get whiplash watching those checks get cashed!
Doctors, nurses and parents all asked Dr. Wakefield about their patients or their children’s colitis like GI disease. Why was it so hard to find help? Why did so many doctors refuse to scope their children despite the obvious evidence something was very wrong. Why were their kids prescribed anti-psychotics in lieu of medical help? Why didn’t the medical community want to help these children? Why weren’t autism researchers, advocacy organizations and autism treatment centers here?
I think fear is the obvious answer. After witnessing the nightmare Dr. Wakefield endured for daring to treat these very sick children at their parents’ behest, this field literally went underground. Now the AAP and other organizations are finally encouraging doctors to take GI complaints seriously and treat them. The problem is no one, outside of DAN!, is telling doctors how to do that. So most pediatric GIs are still in the dark, they do not know what to look for and if they do not find celiac disease nothing is wrong, they advise patients not to try “crazy diets” and might prescribe a reflux drug. We have to do a lot better.
As parent after parent spoke about their child’s heartbreaking symptoms I kept thinking where are all the autism specialists and researchers who have been spending our money? Why aren’t they here? If parents were talking about the genome the place would have been packed with area hospital professionals. If researchers disagree with Dr. Wakefield all the more reason to come! Ask questions, met these families, learn more about identifying and treating GI conditions, get ideas for research, identifying subgroup, exchange information with other health professionals. If I can spend $475 to go to IMFAR, surely NYC autism researchers can come to an ASD/GI lecture. Our event is even free!
Just where were all those autism professionals who receive our hard won NIH autism grants? Why is learning about GI disorders and meeting with parents who have not been handpicked (as with the ATN meeting) so scary or unimportant? Where was Dr. Joseph Buxbaum from Mt. Sinai? Where was anyone from the Simons Foundation? Simons has a huge organization that seems to place little emphasis on here and now issues. Why not prove me wrong and show up? Where was Cold Spring Harbor? They certainly receive their fair share of autism research monies have such a minuscule involvement with the autism community. Where was Dr. Susan Epstein of the Einstein School of Medicine? Epstein also works at CHOP’s Center for Autism Treatment. Where were the Autism Speaks scientists? Our meeting was about 5 blocks north of their offices. Where were the clinicians and researchers from Columbia? Where were their Autism Treatment Center doctors from Columbia? Obviously I could go on and on but I will get into NYC’s autism failings in another post.
It is these same scientists who decry the work of Dr. Wakefield, yet have met none of his patients, are unable or unwilling to debate him and express no interest in learning about or helping this giant subpopulation of kids. Guess what guys; you cannot have it both ways.
At the end of the Q & A I often approach parents who asked a question that relates to my child and learn a great deal from their experiences. We also reconnect with families we might have met at a conference and talk about how things are going. I am frequently approached by therapists and health professionals regarding area resources (it is a short list!) or useful books. NAA board members get direct feedback from attendees about what was useful and what topics they would like to see addressed in future meetings. Great clinicians like Dr. Bock, Dr. Nancy O’Hara, Dr. Elice are frequent guests and spend a lot of time talking with families about their child’s progress. So to area autism professionals : this is not so off the wall or scary, don’t be a stranger, come and check us out!
I know I speak for probably a million parents all over the world when I thank Dr. Wakefield. I wish the dim witted and corrupt GMC had to spend just one day watching before and after videos of our kids: the screaming, the stiffness, the febrile seizures, the terrible GI disease, the loss of speech and skills. No, the GMC wasn’t concerned with any of those ugly details only that Wakefield had the audacity to treat these sick children at their parent’s behest.
Truly a crime against humanity! By the way, the GMC still cannot find one patient who complained or would not talk their child to see Dr. Wakefield again. That may be his biggest “crime”, listening to parents and studying their child’s symptoms. So thank you Dr. Wakefield for standing up for the truth, helping our kids and refusing to dismiss or minimize their suffering although I imagine you were under tremendous pressure to do so. Thank you as well to all the families and donors who supported his important work, without whom would not have the scientific literature replicating Wakefield’s findings. If only this team was in charge of autism research! The epidemic would be over.
Katie Wright is a Contributing Editor to Age of Autism.