WHILE MINSHEW SHRIEKS, AUTISM SQUEAKS
By J.B. Handley
Nancy Minshew, M.D. sits on the Scientific Advisory Board of, you guessed it, Autism Speaks.
Autism Speaks drives me nuts. On the one hand, they often represent themselves as speaking for our community. On the other hand, no one at Autism Speaks ever seems to speak up for anything that might help our kids today.
Let’s take a pause and look back at Autism Speaks’ moment of shining glory: the passage of the Combating Autism Act (which actually took Don and Deirdre Imus to push through). Bob Wright went down to Washington and addressed the Senate of the United Sates and here, from an Autism Speaks press release, is what he said:
“The public health crisis posed by autism requires an extraordinary response. With every new child diagnosed with autism costing an estimated $3 million over his or her lifetime, we cannot afford to rely on standard, ‘business as usual' practices,” stated Wright in his testimony. “The autism crisis demands a focused, coordinated, and accountable response by our public health agencies, similar to the federal response to the AIDS crisis in the 1990s, with line-item appropriations for autism intervention, surveillance and research tied to a strategic plan.”
A crisis? Similar to the response for AIDS? Wasn’t/Isn’t AIDS an epidemic?
I think most members of Congress would be shocked to learn that Autism Speaks own “experts” actually can’t agree on the most fundamental of issues: whether or not we have a growing prevalence of autism amongst our children. As we all read in the paper this week and last, Dr. Nancy Minshew, a government funded-researcher, someone who spearheads one of the NIH’s nine Centers for Excellence created by Congress, an “expert” on autism as she would tell you, and a member of Bob Wright’s own Scientific Advisory Board, is certain that there is no epidemic whatsoever. In her world, two simple things have happened: we now call schizophrenic kids autistic, and we now diagnose verbal children, too. End of story.
Let’s get back to Bob Wright and Autism Speaks for a moment. If Bob Wright had invited Dr. Nancy Minshew, a member of his own organization, to join him in meeting members of Congress, there’d be no Combating Autism Act because Bob Wright was in D.C. telling Congress we have a GROWING problem, an issue of increased prevalence, an EPIDEMIC that we all need to deal with. And you know what? It resonated with Congress, because it’s what they were hearing in their own districts and states from their own constituencies.
I took a look at Autism Speaks website and I couldn’t find a statement anywhere that dealt with the issue of rising prevalence. Nuetral. Like Switzerland. How can that be? How can you be the largest, most well-funded autism organization in the world and not know if we have a growing problem or not? If you think we do, say so. And, publicly disagree with Dr. Minshew. If you think we don’t, say so. Bob Wright sure as hell shared his point of view in D.C.
And, if you actually aren’t sure if we have a growing problem or not, let me provide some advice: stop everything else you are spending research dollars on and figure it out. Don’t wait for the CDC to publish their backward-looking study 5 years from now to tell you nothing. If you don’t know if we have a growing problem or not, how can you reasonably know where to look for cause?
This is the fundamental issue in the autism debate right now: growing problem, it’s the environment; no increase, genetics. Geneticists like Dr. Minshew need there to be no real rise to keep the genetic funding rolling in. Parents like me, living amongst these kids, can’t believe what some of these “experts” are saying.
So, Autism Speaks, I plead with you: Speak up. You put out a policy statement on Mercury and Autism, do the same for the issue of rising prevalence. Put Dr. Minshew or me in our proper place. Or, admit to the world that you don’t know and that you aren’t doing all that much to find out.
If you are a parent, call Autism Speaks world headquarters (212-252-8584) and politely ask them: “Does Autism Speaks have a position on whether or not they believe there has been a real rise in the prevalence of autism? Yes or no? Does Dr. Minshew, as a member of Autism Speaks’ Scientific Advisory Board, speak for the organization?”
And, please forward this to any members of Congress you may know, I’m sure they would find this fascinating.
And, Bob Wright, I encourage you to go back down to Congress, look the same people in the eye who passed your bill, and explain to them why the organization you founded no longer can compare autism to AIDS.
Because the “experts”, in this case your own “experts”, have spoken.
JB Handley is co-founder of Generation Rescue and Editor at Large for Age of Autism.
I read to my son constantly from birth. At 18 months old my husband and I would lay 43 of his favorite books face up across our living room floor and show off to friends and relatives how he could go pick up the exact book from the title as we called it out. He never made a mistake. He could hear a country song and I would say "Who's singing that one?" He would know every time. He was very social up to age 3. No one was a stranger.
Then he received (in 2000) the last of his vaccines. He was behind in receiving them. I took him in because he had a cold and slight fever (100.1)
He received his (HIB and Hep B).
The first thing we started noticing was a droop in his left eye. We took him back to the Dr.
He was diagnosed with lazy eye and if the problem persists to see an optometrist. It persisted. He developed an astigmatism and depth perception problem. Glasses.
Next I noticed he was no longer interested in remembering the names of the books I read him although he still enjoyed our together time. He seemed to lose his capacity to remember anything. He would become fixated on one thing at a time for weeks or months at a time. For example: age 3 rolly polly bugs (potato bugs).Age 4,5,6,7 power rangers, age 8,9 pokomon cards,etc. He no longer trusted anyone but me. He became aloof and introverted.
Kindergarten was OK because he was still "cute." First grade academically I fought for every passing grade he got. We worked hours on simple homework using of course the rote method. The teacher had 35 other kids in her class. How could she give my child any extra time. (No child left behind my foot.) I took him out the first semester of 2nd grade. I researched his symptoms myself because Dr's. just called him "slow."
I never even heard of "Asperger's Syndrome." I was very lucky to find a school that only took students that had adhd and asperger's.
The more I researched I had no doubt my son's immunization's were to blame for his autism. I did not get this idea from anything I read or anything I ever heard on the subject because I did not discuss this with anyone. I was embarrassed did not want to admit any child of mine could had so great a flaw. I overcame that pretty quick. My son IS my heart.
He is now 11 years old and after 3 weeks of a skin rash, fevers ranging from 96.5 to 106.4, vomiting/nausea, swelling in his wrists, elbows, ankles, feet, knees. Severe pain in his back, legs and arms; (4) emergency room visits and a 3 night hospital stay he has now been diagnosed with Juvenile Rheumatoid Arthritis.
Here's where I'm at with this; It sounds like we (us mother's) all have kids ages 12 and younger that are turning up within the spectrum of autism. We already know the social/educational difficulties involved. Do we know the physical/health issues that could manifest from autism alone? How many autoimmune cases are out there involving kids with autism? Do we really need to stay in the "Is it rising?" vortex. That kind of thinking will keep us where they (Dr. Minshew's of the world) want us. Even if there were only 10 cases, that would be too many.
Let's research 1. What vaccine is the culprit. a. Is it or was it defective. b.Is it only defective when given under certain conditions ie:Too many at one time, given when a child's immune system is low c. not given in accordance to specified guidelines.
2. What health risks are in store for these children with autism as the age?
--Here's a thought. Was Minshew and other agencies given incentive (paid) by the makers of our children's vaccines to say there is no epidemic because they (drug companies) have now corrected the tainted batches already given our children?
Posted by: Gina Workman | March 15, 2008 at 01:11 AM
I am always amazed how certain parents could fall for someone like Dr. Minshew. Do they really think someone like this has their child's best interests in mind? To call a parent like this gullible is putting it mildly.
By the way, I did check out that blog and reading the post where the mother allows the child to jump and stim on top of a piano (and thinking this is apparently cute and acceptable) explains a lot about a parent such as this so it is not surprising she would criticize very well informed parents. By the way, it won't be so "cute" when the child is doing this in a few more years.
Posted by: Jill | February 25, 2008 at 10:12 AM
Sensational and negative and The National Enquirer of the Autism World??? This woman has to be kidding. After reviewing her blog I would say it's the Star Magazine of the blogger of world, but hey, that's one mom's opinion!
I find Age of Autism very informative, extremely interesting and I really enjoy reading it. Keep up the great work.
Posted by: Angie | February 11, 2008 at 08:10 PM
Hi Georgia,
Thanks for the shout out. It's true, I did experiment with GFCF ... .and I'm not opposed to biomed or trying GFCF again. Whatever works!
I do find A of A a bit sensational and negative ... but hey, that's just one crazy autism mama's opinion. It certainly doesn't keep me from reading it.
I also think Dr. Minshew has the right to her opinion as a researcher and wanted her to know that. The diversity of the Autism Speaks scientific advisory board is a help, not a hindrance. If everyone had the same viewpoint, once again in my opinion, progress would be impacted.
In the mean time, instead of tying up the AS phone lines to complain, maybe you could spread the word about the new round family services grants they are offering. You can read more about them at http://www.autismspeaks.org/community/fsdb/grants.php
Peace out,
Judith
Posted by: Autismvile | February 10, 2008 at 06:06 PM
One of the bloggers (Left Brain/Right Brain) is sending a letter and e-mails of "support" to Dr. Minshew since he feels the poor doctor is apparently getting condemned from the people on Age Of Autism. Here is an example of one of the commenters, Judith of the blog "Autismville." She is confirming her signature in support of Dr. Minshew and adding her ignorant comment about Age Of Autism:
Autismville on February 8th, 2008 18:34:49 Done.
Age of Autism – The National Enquirer of the Autism World.. It must be exhausting to be so bitter 24/7. Geez…
Someone also told me that this woman claims to have tried the gluten free/caesin free diet for a couple of weeks and it didn't work. You've got to love these types. Maybe she should do some research and figure out what is really involved with biomedical intervention and stop bad mouthing this site.
Posted by: Georgia | February 10, 2008 at 07:52 AM
I Called and they told me to send an email... So I sent it to every email listed on the site:
I am a parent of 10 year old Non-verbal autistic son.
I have been there from the start for Autism speaks...
Promoting, raising awareness, and funds. I have been
more and more frustrated by some of the actions and
comments of the organization. Is it possible to
respond to the following questions and to cite why a
member of the advisory Board would make such hurtful
non-supported comments?
I have a tough enough time getting support, services,
treatment, and respite without the organization I
support speaking out in such a profoundly negative
way.
Does Autism Speaks have a position on whether or not
they believe there has been a real rise in the
prevalence of autism?
Does Dr. Minshew, as a member of Autism Speaks’
Scientific Advisory Board, speak for the organization?
Posted by: Tanners Dad | February 08, 2008 at 10:55 PM
If you check out the Autism Speaks Scientific Board it includes............
Marshalyn Yeargin-Allsopp, M.D.
Centers for Disease Control
and
Emanuel DiCicco-Bloom, M.D.
University of Medicine and Dentistry of New Jersey
Allsopp of the Centers for Disease Control (CDC), the Federal agency that promotes vaccines and Allsopp is definitely on the same page as the CDC.
DiCicco-Bloom who says the National Institutes of Health (NIH) has the "Gold Standard" when it comes to research. The NIH, the Federal agency with a "terrific" track record of not curing any disease or disorder. If you ask me, the NIH has the "Fool's Gold Standard".
"Three Superstars/Winners" with Autism Speaks
1. Minshew
2. Allsopp
3. DiCicco-Bloom
What could anybody ask for?
Raymond Gallup
Posted by: Raymond Gallup | February 08, 2008 at 10:16 PM
When I read articles like this, it reminds me of how alone parents of ASD kids are. Pretty much every other childhood illness is researched with vigor and great care. Sadly, it only appears to be organizations such as ARI,SAFEMINDS, TACANOW...and few more that are looking all over this planet for answers. Each day that passes is a day lost for our children. I took my son to the park yesterday hoping he would want to play. He didn't even care about being there, except for the fact that he had plenty of space to run off. It finally struck me in a slap in the face kind of way, just how WRONG it is for a child not to want to play & not know how to play with other children. One of the most natural things to do as a child is to play. Then I realized that autism is the only illness that does this.
It is known that many children with autism can improve greatly.Many even move off the spectrum. This fact alone proves that many of these children can likely recover with the right treatment. It means this is not a permanent illness set in stone. If these scientists used their resources with vigor and good will to help our children, there is no doubt in my mind we would have a cure in a VERY short time. The neglect both with the scientific community and school system leaves our children's only hope with us. Unfortunately, we need help!
As a side note, I remember Suzanne Wright on Larry King (with Toni Braxton)stressing the increas ein numbers. I would like to pull that transcript. I cannot believe the apparent intentional effort by Autism Speaks to be certain that nothing on their website appears to show an epidemic or even an increase! P.S. Nice pic! Lisa
Posted by: Lisa Miller | February 08, 2008 at 09:36 PM
Dr. Minshew is yet another example of too many autism researchers who are frustrated and defensive because parents are no longer buying what they are selling.Because she cannot devise a genetic cause for the autism epidemic despite her lengthy career and generous NIH grants, Dr. Minshew decided there is no epidemic at all. Problem solved! Now she is repositioning herself as a children's crusader against the poor pathetic parents who irresponsibly choose not vaccinate their autistic children and or sibs due to ignorance. Dr. Minshew is so close-minded that she was outraged (put the gloves back on Dr. Minshew, no one is impressed) at a fictional TV show in which a parent dares to question the safety of a fictional vaccine perservative. I wish the Dr. Minshews of the world were half as outraged at the fact my son's immune system is destroyed and that his colon is covered with craters resembling volcanoes. I suppose the doctor would label my belief that too many vaccines too soon triggered my son's autism, in her word "crappola". Don't our kids deserve better than this? We need professional, objective open-minded researchers willing to leave no stone unturned, not Dr. Minshew. What is even more difficult to understand is why AS' website promoted Minshew's "there is no epidemic" interview as the lead "news" story for many days running. Why insult the community like that so intentionally? If the person in charge of the website were smart they would offer room for a rebuttal but I am not holding my breath.
Posted by: katie wright | February 08, 2008 at 08:18 PM
Jenna:
My thanks for posting the conversation you had with AS. I will most definitely call them too and engage in the same conversation.
I did have to chuckle though when I read the following: "They said that they do not espouse the view that the incidence of autism is not increasing".
Oh, the art of using double negatives (a tool widely used in politics), it such a wonderful way to sound committed while staying absolutely non-committal (it would have taken cohones for AS to say 'we espouse the view that the incidence of autism is increasing').
I think Barbie Hines (hi Barbie!) already wrote this in one of her comments to another AoA entry. Whenever you talk to the "professionals" that work with our kids (be it therapists, medical personnel or school personnel), the concensus answer to the question of 'Are there more kids with autism now than 5 to 10 yeras ago' is a resounding "YES, and yes, we also see many more that don't have an official diagnosis but where clearly 'something' is going on."
[Sarcasm Alert] Sure, it's all better diagnosis and more people pushing to get their kids 'labeled' so they can get services, right? Oh really? Like we WANT to have to spend all our time fighting to get our kids the appropriate services, therapies, medical treatments? Oh, I forgot, we warrior parents all suffer from 'Munchhausen by Proxy" as we feel so inadequate about ourselves that we need to get validation through our children...Gimme a break!!!
Petra
Posted by: Petra | February 08, 2008 at 04:31 PM
Exact points JB! The CDC has long denied that autism has increased or that it's even a problem. Countless organizations
and agencies agree. Doctors and officials pat themselves on the back claiming that all these affected children are the product
of "better diagnosing" and "greater awareness," not to mention "an expanded spectrum." Why should anyone be worried?
We are daily fed the claim that
autism is genetic and incurable.
If we can't even come to the conclusion that something previously rare is overwhelming a generation of children right before our eyes,
nothing will be done.
Anne Dachel
Posted by: Anne Dachel | February 08, 2008 at 04:17 PM
I just spoke with AS. They said that they do not espouse the view that the incidence of autism is not increasing, and that Dr. Minshew does not speak for AS on this issue. I politely related my view that Dr. Minshew's comments were counterproductive to an organization trying to create a sense of urgency around the need for autism research and resources. I also indicated that I found Dr. Minshew's comments to be extremely insulting, and informed her that many families impacted by autism have scientifically astute members, including ours. One can't neatly separate "scientists" from parents in our community. I would encourage others to call as well.
Posted by: Jenna | February 08, 2008 at 12:10 PM
I can't for the life of me figure out what is going on with Bob and Suzanne Wright. Any scoop on them? Really. A few thoughts:
a) They are overwhelmed with the situation. They take a backseat to the decision making process of who becomes an expert and what "theories" are put out there for the increase in autism.
b) Pressured from pharma companies to ignore the issues as they pertain to vaccinations.
c) Putting the tin foil hat on for a second... They are entangled in some sort of government conspiracy? Hat off.
d) They realize that they are a big money making organization and need to toe the line on this issue. The line which (for now) steers far away from pointing a finger towards vaccinations.
e) All of the above. Some of the above. None of the above.
It's hard to figure them out. I started off having so much hope that with their grandson's story and their daughters beliefs they would look in the right direction -- looking towards the environmental triggers (including vaccinations) but they have dropped the ball big time... even if by ignoring the issue they had to go against their own daughter.
Posted by: Sue M | February 08, 2008 at 09:32 AM
In the great, pretentious words of Julius Caesar, alea iacta est. The die has been cast. AS is what it is and crossed the line a long time ago, though it is funny to point out its endless hypocrisies.
Your parallel sums it up really well. You could say that Swiss (bank) neutrality is to its acquisition of plundered assets of holocaust victims during WWII what AS's nonprofit status is to its function as profit-driven pharmacogenetic think tank during this epidemic. Not quite as many victims yet, but who's counting (except us)?
Posted by: Gatogorra | February 08, 2008 at 08:08 AM