By J.B. Handley
Dear Dr. Minshew,
It’s my understanding that you are a child neurologist and that you have been a professor of psychiatry and neurology at the University of Pittsburgh School of Medicine for the past 22 years, and that today you run one of the NIH’s nine Centers for Excellence of Autism.
I took the time to read this 100 page presentation you gave on autism, which helped me understand your perspective on my son and what ails him. To summarize from your bio on the ASA’s website, you have developed a “model of autism as a disorder of brain connectivity and constrained information processing accounting for many of the manifestations of this disorder.”
The reason for my email today, which I’m also posting on a public blog I write for, isn’t really about my son, it’s about me. You see, after reading many of the things you have written and said, I find myself in a real funk, a state of angst and confusion.
Let me explain: My son was diagnosed with autism about 3 years ago. Since that time, I have devoted myself to reading every printed page of science I have been able to find on autism. I’ve interviewed or seen dozens of different “experts” (as you are often referred to in the press), and my wife and I have worked diligently to do everything we can to help our son.
Unlike you, my wife and I are neither psychiatrists nor neurologists. In fact, we’re both businesspeople, perhaps a background you would not perceive as ideal for understanding autism. On a daily basis, I spend my time making judgment calls with limited and often conflicting information, always with the benefit of reams of data, in order to try and make a profit.
Back to my dilemma. Since you are an “expert” on autism, 22 years deep into your field, I’ve got a real problem on my hands: I disagree with almost every single thing you have written or said about autism. Since we both can’t possibly be right, one of us has to be crazy. I’m scared to death it might be me. As a psychiatrist, I thought you could help.
I had never heard of you until last week when, for reasons I can’t pretend to understand, your name appeared in a number of articles discussing Eli Stone and the relationship between vaccines and autism. Just to remind you of what you said, here are a couple of excerpts I read:
“Dr. Nancy Minshew, Director of the University of Pittsburgh's Center for Excellence in Autism Research, says it's time to end the debate [about vaccines and autism] because research overwhelmingly proves there's no connection and parents don't need to worry about that anymore. Minshew says it's time real experts dispel the rumors for concerned parents. "They deserve to hear the evidence, the real evidence. So I thought, 'Enough is enough,'" she said. Minshew says people's lives are at stake because some kids aren't getting vaccinated for life-threatening diseases due to incorrect information. Since Thimerosal, an ethyl mercury preservative, was banned from most childhood vaccines in the U.S. seven years ago, autism rates have continued to increase - disproving the link. Minshew says it's only a coincidence that toddlers are vaccinated around the same time autism is usually diagnosed.”
“She says one of the problems is that there is no great source for parents to get the best scientific information. Minshew suggests they read a new court ruling from Maryland that determined vaccines do not cause autism. She says because it's written by a judge and not a scientist, it's easier to understand.”
"You don't need the guilt of thinking you took your child to be vaccinated and that caused the autism," said Dr. Nancy Minshew, the director of the University of Pittsburgh Autism Research team. "It absolutely did not."
I really didn’t pay much attention to these press mentions of you last week because I’ve grown pretty insensitive to the propaganda effort (as I perceive it) continually underway to defend the national immunization program. Then, a parent forwarded me an email you wrote to him, which I have taken the liberty of including in its entirety below. One of your comments is really contributing to my condition:
“I hope that someday you will have the peace of knowing that autism is the result of millions of years of genetics and there was nothing that was done to precipitate it and there was nothing that could have been done to prevent it. The increase in number of cases reflects the increase in recognition of verbal children.”
Dr. Minshew, this seems like a good time to be more specific with you about my mental state, by discussing the issues I have with your various points of view.
1. You say we are not experiencing an epidemic of autism.
It is maddening for parents like me that our “experts” can’t agree on the most fundamentally important and critical data point in the entire field of autism: is prevalence truly rising or not? This very binary notion impacts everything else. If it’s growing, it’s the environment. If it’s not, it’s genetics. From you perspective, “The increase in number of cases reflects the increase in recognition of verbal children.” I was confounded by this point, because I can’t find a single sentence in the scientific literature to support this. What I do look to is the following:
i. Report to the Legislature on the Principle Findings from The Epidemiology of Autism in California: A Comprehensive Pilot Study
MIND Institute, UC Davis, Oct 2002.
"There is no evidence that a loosening in the diagnostic criteria has contributed to increased number of autism clients...we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California...a purely genetic basis for autism does not fully explain the increasing autism prevalence. Other theories that attempt to better explain the observed increase in autism cases include environmental exposures to substances such as mercury; viral exposures; autoimmune disorders; and childhood vaccinations."
ii. National Autism Prevalence Trends From United States Special Education Data.
Pediatrics, March 2005.
Craig J. Newschaffer, PhD [Johns Hopkins University].
"Cohort curves suggest that autism prevalence has been increasing with time."
2. You say vaccines are proven to not cause autism and that parents should vaccinate their children.
Dr. Minshew, you are either being intellectually dishonest on this point or it is outside of your expertise as a psychiatrist to understand the vaccine-autism issue, Let me explain:
- Thimerosal was not banned from vaccines as you are quoted as saying, so this is a falsehood.
- Thimerosal did not come out of vaccines seven years ago as you are quoted as saying, so this is a falsehood. In fact, it’s still in the overwhelming majority of the flu shot supply at full dose- the flu shot was recently added (2004) to the CDC’s recommended schedule.
- If you believe that focusing on a single ingredient in vaccines (mercury) exonerates vaccines in totality, that’s an impossibility. We have grown our vaccine schedule from 10 vaccines in the early 1980s to 36 today. Yet, we never test the “combination risk” of so many vaccines. No one, except Generation Rescue, has ever studied unvaccinated children and looked at their autism rates. We never look at the aluminum that replaced thimerosal, the live viruses, or the many other toxic ingredients in vaccines at all.
- The parent reports of children going upside-down and developing autism right after vaccination continues unabated. Will you ever listen to them?
It strikes me, and perhaps I’m crazy for saying this, that now that you have publicly reassured parents that vaccines are safe, that you may well be the last person on earth, even in the face of overwhelming evidence, to concede that vaccines are in fact playing a role in autism.
3. You never mention recovered children.
In all the writings and quotes of yours, Doctor, I didn’t read one thing about children who have recovered from autism. Have you ever met a recovered child? Would you like to? Would you care to scan their brains and see how they look? I heard a noted neurologist mention an idea that we should scan the brains of children newly diagnosed with autism, let their parents who want to treat the children biomedically, and then re-scan the brains of any children who have recovered. Does that strike you as an interesting idea?
Dr. Minshew, I read with sadness in your email that you lost a child. My heart hurts for you. Do you have any young children who are part of this generation?
If you do, do you see the reality so many of us see: learning disabilities, food allergies, auto-immune disorders, and ASD everywhere? A world very, very different from the one we grew up in during the 60s, 70s, and 80s, where so many children seem to be sick. A 5 year old’s birthday party where 80% of the boys are in speech therapy, because they need it.
We have, Dr. Mishew, an emerging thesis in our community of scientists, doctors, and parents that seems to tie together so many confounding pieces. A thesis that says what we are witnessing is a wide-scale environmentally-triggered epidemic amongst our children. A trend line of ASD cases that matches, quite exactly, an increase in our vaccine schedule that has moved from preventing deadly diseases to preventing any disease vaccine manufacturers think they can make a profit from. A group of autistic children with meaningful and consistent physical issues that are much more consistent with environmental illnesses than anything genetic. A “gene hunt” for autism that has turned up nothing. A group of doctors who are treating our children for physical ailments and watching them recover.
This is my world, Dr. Minshew, it seems clear as day. It’s so different from yours, I really, really need to know: which one of us is crazy?
Father to Jamison
Co-founder, Generation Rescue
Complete email from Dr. Minshew to a parent:
Dear Mr. ----, I appreciate your passion but what you state reinforces the issue I raised by introducing the opportunity for parents to read the Blackwell Court Decision and the four others before it as well as testimony that was and may still be available on the Autism Speaks website from Andrew Wakefields research technician. I know you know that his paper was withdrawn and that he is under investigation in England for misconduct. During a recent court trial, Andrew Wakefield's technician for this paper reported that the gut samples from the children with autism and those from children without autism looked exactly the same. He reported this to Andrew Wakefield and was ignored. The samples have now been examined by other gi experts who concur with the technicians original reading. This is public record through the court testimony.
I am sorry that parents end up being misled about the veracity of findings such as this. It is very unfair. I hope that you do take the opportunity to read the Blackwell Decision as it provides insights about other so called evidence that parents hear about but don't understand why scientists don't take seriously and also the Sunday NYT Magazine of Sept 16. In addition the Institute of Medicine Committee reviewed all of these studies and will address their validity which includes the interpretation of findings in immunized children with and without autism and samples obtained years after an event in brain development that appears likely to have begun in mid-fetal life.
It is cruel to parents that they don't get an accurate story about such findings or of the extremely broad findings in the scientific literature. I cannot imagine anything worse than to think that you did something that contributed to your child's getting autism or that someone else did. Indeed I feel that way about my son's death but for good reasons.
However, I can assure you that the worlds best physicians and scientists are well aware of the studies you talk about and these studies are not sound- their methods are not or their conclusions are not. And there is an extensive set of findings that support no connections. There is also extensive science on the developmental neurobiology of autism that the developmental disturbance begins in fetal development. Like dyslexia which is not manifest until 2-5 years of life, the seeds are present in the embryo and begin to unfold in cortical development in fetal development. Again I am very sad that families do not have access to accurate information and to far less information than exists.
I hope that some day you will have the peace of knowing that autism is the result of millions of years of genetics and there was nothing that was done to precipitate it and there was nothing that could have been done to prevent it. The increase in number of cases reflects the increase in recognition of verbal children. I know this because the verbal individuals were not recognized outside of research centers when I started 25 years ago and now they are, perhaps because early intervention presented an incentive to notice them. There is a study of adults in state hospitals that shows that many adults diagnosed with schizophrenia have autism. I wish you the best. I wish you peace.
NM [Nancy Minshew,M.D.]
As a courtesy, I forwarded the above piece to Dr. Minshew one day in advance of posting it on Age of Autism. What follows is a short email exchange between us:
From: J.B. Handley
Sent: Monday, February 04, 2008 11:54 AM
To: Nancy Minshew
Subject: Re: Nancy & Me: Who's crazy
And, tough shit.
----- Original Message -----
From: Nancy Minshew
To: J.B. Handley
Sent: Mon Feb 04 11:50:31 2008
Subject: RE: Nancy & Me: Who's crazy
Mr. Handley none of you have permission to share emails that i have sent to you as individuals with anyone besides the intended receiver nor do you have permission to quote me publicly. Unlike the newspaper which was public, private emails to individuals sent confidentially are not for public quotation.
From: J.B. Handley
Sent: Monday, February 04, 2008 2:42 PM
To: Nancy Minshew
Subject: Nancy & Me: Who's crazy
What’s written below, by me, will be posted at The Age of Autism blog tomorrow. As a courtesy, I’m sending it to you first.
I have no issues with you personally. In fact, reading that you lost a child makes me very, very empathetic.
That said, it is my heartfelt belief that you are actually part of the problem with autism, rather than part of the solution. I’m sure that’s a comment you disagree with profoundly, but I really believe history will be a harsh judge of scientists like you who continue to deny the existence of a rising prevalence of autism and mistakenly reassure parents that vaccines are safe – a topic you can’t possibly be an expert on, by the way.
I also thought your email to Mr. ---- reeked of intellectual arrogance in a very close-minded sort of a way. There are many well-credentialed scientists who would take exception to almost everything you believe about autism, but you speak with sweeping generalizations like you are in the only camp that actually knows where truth lies. I also found your continual reference to a court case in Maryland, while 2 tests cases before the Vaccine Court remain WIDE OPEN, to demonstrate either ignorance on your part or a case of selective fact gathering. What if the test cases in D.C. rule in favor of the plaintiffs?
So, I don’t expect us to be pen pals anytime soon, but I’m including the open letter to you below.
JB Handley is Editor at Large for Age of Autism.