Archive | September, 2008

Respond Now to the IACC Request for Information (Please)

30 Sep

Here is a link to an email form that will help you to respond to the Interagency Autism Coordinating Committee. It is the “long form.”

Go ahead.

Really.

Check it out.

Now would be good.

There’s a link at the top of that page to a “short form” if the long one feels too daunting (I don’t think it is.)

Here’s a reminder of what the IACC wants to hear:

Information Requested

The IACC welcomes your comments on the draft Strategic Plan for ASD Research. The draft plan can be accessed at the following website:http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/strategic-plan/2008/iacc-strategic-plan-august-2008.pdf

Please organize your comments by the sections of the draft Strategic Plan:

…

How to Submit a Response

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

Where it says, “Please organize your comments by the sections of the draft Strategic Plan…. Well the form (made by Sullivan) is laid out for you in the proper order and gives you the framework for waht you might want to say first, second, third, and so on.

Have you sent your thoughts to the IACC? Why not? Click here for that form I mentioned earlier. They want to know what Y.O.U. think. Seriously. They want to know what you think. If you only have one thought about autism research (too much money has been spent beating a horse that was dead to begin with… the vaccine/autism connection, then say something about that, if you love PECS and want more research about PECS then tell them that, if you want research into whether a certain PR man to the mercury-militia has a conscience … well, that’s not on topic, but you could say that you want more research into how to provide communication devices for autistic people who need them, or more research into the stress-induced diseases of autistic people like irritable bowel syndrome, or more research about the way the peculiarities of autistic people’s vision or hearing, how about research into the use of melatonin for sleep, or research into how to get kids off of certain prescription drugs by reducing stress, or how about how best to take care of the teeth of autistic children…) then share it! Don’t keep it to yourself. Share it! Now would be good. Time is a wasting! Let your voice be heard. They’ve heard more than enough from the likes of Lyndell Redwood and Jim Moody, let them hear what YOU want them to hear. If you have an aunt or grandparent who has some big ideas about what they should be researching for autistic people, then you can forward the URL for the automated form to them http://rolihlahla.com/iacc_longform.html . If you are an autistic adult you could tell them that you would prefer that autism not be eradicated in Suzanne Wright’s lifetime, or tell them you want help in figuring out how to get and keep a job. But they need to answer right now because time is flying.

http://www.7is7.com/otto/countdown.html?year=2008&month=9&date=30&hrs=23&ts=24&min=59&sec=59&tz=-240&lang=en&show=dhms&mode=r&cdir=down&bgcolor=%23CCFFFF&fgcolor=%23000000&title=Countdown%20To%20Deadline%20to%20Respond%20to%20the%20IACC

Mitochondrial disease discussion in Indianapolis

29 Sep

You may recall that there was a panel discussion on Mitochondrial Disease and Autism following the United Mitochondrial Disease Foundation’s (UMDF) meeting in Indianapolis. This, of course, was prompted by the news reports of the Hannah Poling case.

If you are looking for the incredibly short answer, quote mine, here it is:

To reduce the risk presented by acquired infections, the workshop panelists strongly encourage vaccinations in the hundreds of children they treat for mitochondrial disease. Among thousands of patients they had collectively seen, very few had deteriorated following vaccination, and in those few cases, it is difficult to determine that other stressors besides the vaccine did not play a role in the neurologic deterioration.

The panel discussion was held June 29th, and the report from that has just been published.

The panel was organized by people from NIH, NINDS, HHS and CDC.

Thomas R. Insel, M.D.
Director, National Institute of Mental Health, National Institutes of Health

Walter Koroshetz, M.D.
Deputy Director, National Institute of Neurological Disorders and Stroke, National Institutes of Health

Daniel Salmon, Ph.D., M.P.H.
Vaccine Safety Specialist, U.S. Department of Health and Human Services

Ed Trevathan, M.D., M.P.H.
Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

The panel included a lot of the names you would expect to hear from:

Kim M. Cecil, Ph.D.
Research Associate Professor, Cincinnati Children’s Hospital Medical Center

Bruce Cohen, M.D.
Department of Neurology, Cleveland Clinic Foundation

Stephen R. Dager, M.D.
Departments of Radiology, Psychiatry, and Bioengineering, University of Washington School of Medicine
Interim Director, University of Washington Autism Center,

Darryl DeVivo, M.D.
Sidney Carter Professor of Neurology and Pediatrics, Columbia University

Salvatore DiMauro, M.D.
Lucy G. Moses Professor of Neurology, Neurological Institute of New York, Columbia University Medical Center

Pauline Filipek, M.D.
Associate Professor of Pediatrics and Neurology, University of California, Irvine

James F. Gusella, Ph.D.
Director, Department of Genetics, Center for Human Genetic Research, Massachusetts General Hospital

Richard Haas, M.D.
Co-Director, Mitochondrial and Metabolic Disease Center, University of California, San Diego, School of Medicine

Robert K. Naviaux, M.D., Ph.D.
Co-Director, Mitochondrial and Metabolic Disease Center, University of California, San Diego, School of Medicine

Joseph Piven, M.D.
Director, Neurodevelopmental Disabilities Research Center, University of North Carolina, Chapel Hill

Roberto Tuchman, M.D.
Director, Autism Programs, Miami Children’s Hospital Dan Marino Center

Douglas Wallace, Ph.D.
Director, Center for Molecular and Mitochondrial Medicine and Genetics, University of California, Irvine

The proceedings are a summary, not a transcript of the actual event. It is a very good summary of what is known about mitochondria and mitochondrial disorders. It’s worth reading, and it is not very long. However, I’ll pull some summary information out here:

Mitochondrial genetics and biology

We all have two sets of DNA–the nuclear DNA (nDNA) that we are used to hearing about as the “blueprints” for inheritance and mitochondrial DNA (mtDNA) that are inside the mitochondria and help with the processes in the mitochondria.

Even though mitochondria are inherited from the mother, mitochondrial disease can involve both the nuclear and mitochondrial DNA, and, thus, mitochondrial diseases have multiple inheritance pathways.

You can have different mtDNA in a single cell or in different tissues–this is called heteroplasmy.

An overview of mitochondrial diseases

There are 200 mtDNA mutations and 2,000 nDNA mutations that can lead to mitochondrial disease. (The nDNA is much bigger than the mtDNA, so it isn’t surprising that more of the mutations are found on the nDNA).

The incidence of mitochondrial disease is between 1-5 in 10,000. But, the understanding is evolving.

Mitochondrial diseases present a very large spectrum. But, some generalizations can be made.

…they are typically progressive and multisystemic, most often affecting organs that have high energy demands such as the brain and nerves, skeletal and cardiac muscle, and the liver and kidneys.

There are a number of possible flags for mitochondrial disease, often when more than one area is affected at once. They noted, when the idea of autism and mitochondrial disease is discussed:

Of particular interest for this workshop, central nervous system manifestations of mitochondrial disease can include hypotonia, seizures, encephalopathy, ataxia, intellectual disabilities, global delay, and brain malformations. Sensory and peripheral nerves can also be affected, leading to deafness, blindness, or neuropathy.

Diagnosing mitochondrial disease

If you’ve already read about diagnosis of mitochondrial disease, you know it is a very complicated process.

The workshop panelists explained that diagnosis is often a lengthy process beginning with a general clinical evaluation followed by metabolic screening and imaging and finally by genetic tests and more invasive biochemical and histological analyses.

Metabolic screening, MRI, genetic testing and enzyme function through biopsy are all noted as tests, but no single test or even set of tests are definitive.

Known triggers of mitochondrial disease

If there is one section that the online autism communities are likely to zero in on, it’s this.

Mitochondrial diseases can go undetected for many years, and many cases display an episodic course with relatively stable periods punctuated by abrupt degeneration that may coincide with an infection or other stress to mitochondrial function.

If you’ve been thinking about this a lot, you’ve probably asked yourself how the mitochondria react during a fever. Fevers are an increase in temperature, which, naturally, takes an increased energy output.

Of possible importance, mitochondria are the major generators of body heat and are therefore extremely active during fever. It is not known whether fever or other aspects of the inflammatory or immune response to a virus or bacteria trigger deterioration after infection

The phrase that probably will be the one take-away for most people in the autism community who have been following the mitochondrial issue:

To reduce the risk presented by acquired infections, the workshop panelists strongly encourage vaccinations in the hundreds of children they treat for mitochondrial disease. Among thousands of patients they had collectively seen, very few had deteriorated following vaccination, and in those few cases, it is difficult to determine that other stressors besides the vaccine did not play a role in the neurologic deterioration.

From what I’ve heard, they were very, very strong in their recommendation for vaccination to protect against infectious disease in this very vulnerable population.

Other triggers include dehyration, reduced caloric intake or, in some cases, exercise.

Environmental causes of mitochondrial impairment: AZT, valproate, statins, chemicals like MPTP and the pesticide rotenone, fungal toxins, and even cigarette smoke and alcohol.

Mitochondrial diseases and autism: clinical parallels and evidence for a relationship

Both Autism and Mitochondrial Disease are broad spectrums. The subtypes for autism are less well defined, making it hard to make good comparison. It is difficult to pull only a couple phrases out of this section, but I will pick two:

Workshop panelists who treat children with mitochondrial disease noted that some of these children have autistic features, and some children eventually found to have mitochondrial disease are initially diagnosed with an ASD. In addition, siblings of children with maternally inherited mitochondrial disorders sometimes present with autism. Presumably, they have inherited the same mitochondrial mutation from their mother, but the mutation may be difficult to find. Workshop panelists who mainly see individuals with a primary diagnosis of autism found parallels with clinical observations in mitochondrial disease such as developmental regression, seizures, and gastrointestinal complications

and,

Additional parallels between ASDs and mitochondrial disease noted by the workshop panelists were in family histories and patterns of inheritance. These included possible maternal inheritance in some ASDs, a similar higher prevalence in males for both ASDs and some mitochondrial diseases, and a high frequency of psychiatric conditions such as depression, delusions and attention deficit disorder in families with mitochondrial disease, including in relatives who seem otherwise unaffected.

Advancing research on the relationship between mitochondrial disease and autism: needs, priorities and emerging tools

This section notes two types of studies which they suggest should be done: a targeted and an unbiased approach.

By targeted they mean a study that

…would involve a thorough investigation of a relatively small ASD population selected for characteristics that indicate a greater likelihood of mitochondrial involvement. Such a strategy might involve more in-depth or invasive testing, including, for example, muscle biopsy and brain imaging with MR spectroscopy.

On the other hand, the unbiased approach:

… would instead survey a larger, more diverse population and could inform questions about the extent to which mitochondrial disease contributes to ASDs more broadly.

From my perspective, both sound like good avenues for research–neither better or more important than the other.

If you are following this subject, I would again urge you to read the entire summary. It isn’t very long. It is unfortunate that people (myself included) will pull bits and pieces out.

Broken Families, Not Broken Children

29 Sep

Introduction – This is a Guest Blogged piece, written by a father in what is a far from unique situation and yet a situation we hardly ever discuss. Its humbling, touching, sad and affecting. Its also a microcosm of how fractured the autism community has become and how some are prepared to accept dangerous treatments where others are simply not. I hope you can give the author some feedback after you read this piece. Kev.

Broken Families, Not Broken Children

By a Proud Father

I’m sitting here, having just put my son to bed, and dreading having to take him over to his mother’s in the morning. This is my long weekend with him – Friday evening until Tuesday morning – and they go by so quickly. I’ll see him in a couple of days for 24 hours before he’s gone again for another 4 or 5 days. It’s a convoluted mess, but the best I can do right now. He’s handling it very well and we have way too much fun when we’re together. I don’t know about the other days, and I try hard not to think about them too much. I hope he’s as happy as he seems to be here.

You always hear about the high divorce rate among parents of autistic children. I guess my assumption was always that one of the parents was never able to deal with the realities of raising an autistic child and bailed out of the marriage with a comment like, “I just can’t handle this. I’m sorry.” (Sound of front door closing.) But now I wonder whether it’s often a different situation entirely – two parents who love their autistic child but are at completely opposite ends as to how to “treat” them. I say that because that is exactly what has happened to my marriage and my family.

I will be the very first to admit that our marriage had never been perfect, that it had more than its share of rocky times. But there were never any “external” factors as such, and our lives were devoted to our son, who will be 5 at the end of this year. I won’t go into all of the details of the first few years of his life; I’m sure everyone has heard of – or lived – them all: missed milestones, speech delays, socialization problems, repetitive behaviors, and so on. But we accepted it – I thought – and started the usual speech, occupational, and physical therapies, and he began attending a preschool PPCD class at the elementary school down the street where he will eventually go to Kindergarten and grade school.

About a year and a half ago, my wife mentioned she had heard of a place in Austin that could help our son. At that time, we had not heard of Wakefield et al, and were only marginally aware of the vaccine-thimerosal-autism “issues”. Our first appointment went fine it seemed, and we got a list of supplements as well as dietary guidelines to follow. I remember leaving there and heading home to Houston on a mild, pleasant winter afternoon, thinking, “Wow, now we can really get him some help and everything will be fine.”

But it went downhill from there. As I started to do more and more reading and more and more research on what they wanted to do to our son, I became increasingly concerned about the lack of proven effectiveness – and more importantly – the safety of the treatments. I tried to show my wife that this was all starting to get more than a little scary, but she blew it off, saying that these people were the only ones that really cared about helping our son.

I had allowed our son to undergo several weeks of B-12 shots, the only effect being that it made him jumpy and restless at night (he has always been a good sleeper and consistently gets 10 hours a night). I had allowed him to get several weeks of DMSA suppositories to absolutely no effect. I had allowed gallon after pound of blood, urine, and stool samples to be taken from him and sent off to the mail-order labs we all know about, the ones who send back pretty, colorful lab reports designed to show parents how much they know and how much they care about their kids. I showed her the lab reports that we did manage to get from the reputable labs that completely contradicted the other ones. She refused to allow him to get his 2nd MMR shot (although his pediatrician – an excellent, common-sense doctor – allowed us to wait a bit on that one, she did insist that when he turns 5, he will get the shot.) The DAN! protocol, the Yasko protocol, homeopathy, naturopathy, functional medicine, and so on, and so on.

I kept telling my wife that this had to stop. In the meantime, I heard things like, “You don’t want him to get any better so he can remain dependent on you the rest of your life”, and “If you don’t want to help your son, get out of my way”, and “Didn’t you hear the (DAN) doctor when he said ‘It’s clear the metals are there’?”, and “Do you want him to stay like this forever?” (that last one – and other similar comments – said in front of our son). No, there is no such thing as an autistic meltdown, they’re all temper tantrums and should be treated as such. Stop every single stem, it’s bad for him. No, he’s a child with autism, not an autistic child (as if it were a disease that needed to be eradicated).
And then, of course, along came Jenny McCarthy to validate everything.

I somehow managed to keep the scary stuff away from him for a while (I’ve found out that at least some of these doctors are hesitant to insist on treatments if one parent is adamantly opposed to it). But then one day a new package came in the mail: DMSA suppositories, B12 shots, Valtrex, and glutathione cream. She had gone behind my back and gotten the DAN doctor to prescribe these things. I knew then the marriage was over. No matter what, I was not going to allow our son to be subjected to this insanity all over again.

So that’s where we are now: in the middle of a divorce; fighting to do what each of us thinks is best for our son; fighting over who has the right to determine his treatments and therapies. So far, I have managed to do what I set out to do: stop our son from being hurt any further. Alternative medicine treatments have been stopped – no chelation, no injections. When he is with me, there is no GFCF diet (he has always tested negative for celiac disease and reputable allergy tests show he’s not allergic to anything). He can have dairy milk, whole wheat, and all of the fruits, vegetables, and nuts that he supposedly was deathly allergic to. And he has never shown any external or internal adverse effects from any of that. I do not give him the dozen or so supplements that were a part of his life for too long – although I’m sure he gets them on other days.

I know that there are those who treat autistic children who are fully aware of the utter ineffectiveness of their treatments as well as the very serious risks associated with them. I honestly believe there is a special place in hell for them.

I also know that there are those who honestly believe that their treatments are effective and that they are doing autistic children a great service. I sometimes pity them – as I pity my wife – that they can’t admit that they are wrong in the face of overwhelming scientific evidence. But then I think about how this lack of objectiveness and concern affects the health and safety of innocent children, and my pity disappears – completely – and is replaced with anger.

They say that what matters most when raising an autistic child – above all else – is love and acceptance. While I know that both of his parents love him dearly, one of them does not have the acceptance. And that is sad – sad for our son, sad for his parents, and sad for the family.

I have lost my wife as well as family members over this; in-laws that were like members of my own family. But it is really all about our son. He is a genuinely happy, smart, and gentle child who is the most incredible gift I can possibly imagine. And I will not allow anyone to tell me – or him – that he is broken, that he needs to be fixed, that he needs to be released from his prison, or that he is soulless.

One of the most beautiful statements I’ve read in the last couple of years comes from a wonderful essay that Kerry Cohen wrote called What’s Wrong With This Picture ?. She ends it with:

But if I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.

Sunday Solutions – No. 2

28 Sep

Social Stories are short descriptions of very particular situations. Some autistic people find them very useful for grasping new situations, as strategies and as tools to assist in learning key skills.

We have learnt with my autistic child that the ‘traditional’ social story is useful but not quite enough. Xe responds better when there is a definite and concrete sensory link to what is being said. For example, when xe started pre-school, we took pictures of the staff that would be there and constructed social stories around who these people were and what xe could expect of them.

Taking that one step further is the idea of constructing mini-presentations as social stories. I have been experimenting with these for 4 or 5 months so far and whilst I have yet to find a perfect balance, they are an upgrade from static pictures.

This tutorial shows you how to use the free online tool Empressr to build truly interactive social stories. For autistic people like my child who are very IT literate, being able to click through as many times as xe likes seems to help. You can also build them with video, audio etc as well as just pictures and text.

I hope this weeks Sunday Solution is of some help.

Hey, "Big Autism". This is what a PSA looks like.

28 Sep

This is a PSA from the National Down Syndrome Society.

Big Autism is a term coined by the blogger Prometheus.  I believe he had in mind “Autism Speaks” (which consumed Cure Autism Now, and National Alliance for Autism Research) and “Autism Society of America” (which is affliated on some level with “Defeat Autism Now!”/DAN! and the badly named “National Autism Association”of Nixa, Missouri).  Big Autism, unlike the National Down Syndrome Society, still needs to get a clue.  Big Autism has done a  horrendous job of representing autism to the public.  It’s shocking how bad they are at advocating for autistic people.  It can’t be a good sign when an organization picks a number to represent how many people they are supposed to be helping because it sounds good or looks good.  This is apparently what Autism Speaks has done in their choice of “1.5 million” which is supposed to be how many people in the US have autism.  Autism Speaks , when asked, refuses to say how they arrived at the magic “1.5 million,” probably because if they bother to explain it, the explanation would undo their autism epidemic story.  It doesn’t matter if it’s accurate, what matters is if it brings in the donations.

But back to how PSAs should be done. One of my favorite PSA videos ever is from the National Down Syndrome Society and is called “Dreams”. Click here to see it. If you’re like me you will become verklempt, so get a hanky first.

I love this one, too. It’s from Brazil.

Here’s another I just found.  It’s from the UK.

The (US based) National Down Syndrome Society has three more, new, advocacy videos, here featuring three celebrities, including Chris Burke, a Down syndrome adult and actor.  In my opinion, the NDSS knows how to do advocacy for DS people.

Why is it that autism can’t get some decent celebrity spokespeople? (OK, so we sort of have Sigourney Weaver). And Amanda Peet is great, of course, but she’s a spokesperson for vaccines, not especially for autism.  It’s like the US autistic community got stuck with the worst of the dregs for celebrities. I know, I know … “LEAVE BRITNEY ALONE!” If she and Jenny McIndigo will leave autism alone, I think we’ll all be relieved.

In the US, to my knowlege, the big autism orgs have never gotten it.  Their “outreach efforts” usually reach out and devalue autistic people; their “Public Service Announcements” are in reality “Public Disservice Announcements”.  The UC Davis MIND Institute put out a really awful set of PSA’s when they first moved into their fancy building. And let’s not forget the ransom notes campaign.

This is part of a longer video called “Living with Fragile X”-

In case you don’t actually watch that one.  At the end a mom of an adult son says,

“I wanted him to be normal.  And if I have any regrets it’s that I did not let myself love him at that moment.  Just say, ‘I love you just the way you are.’ And I hope he forgives me…for ever thinking I wanted him to be different.”

That! That is what a Public Service Announcement should look like.  It even features a researcher from the UC Davis MIND Institute who mentions autism, if you can believe that. It doesn’t candy-coat the problems of Fragile X people, but neither does it over-dramatize the problems and go out of it’s way to stigmatize anyone.

Belgium seems to have figured out how to do autism PSA’s already.

Setting a nice example for the English speaking world, this is amazing video showing what the NAS, the National Autistic Society, has been doing for some time now, that is, actually respecting and helping autistic people.

Here are four more PSA’s, professionally made ones, these from the NAS.  I don’t think they are perfect but they are so much better than anything that’s being done by “Big Autism” in the US.  See the videos, here, here, here, and here.  This one is good, too, the NAS President and individual Members of Parliament discussing the way autistic adults have been ignored to a huge extent.

The following ones are new to me.  They are fairly informal NAS interviews with autistic adults, here, here and here and an interview with a boy. The UK has been invaded by Autism Speaks, but the British version seems to be slightly less bombastic, so far, maybe not, though. “Treehouse” is having a conference in London next month and Bob Wright of Autism Speaks will be there to speak. I understand that autistic adults will attending and representing autism realistically, one can only hope that Bob Wright will take notice.

It’s amazing what can be accomplished when people in authority are tuned into reality and the long term, instead of being tuned into damaging illusions and distortions and short term pay-offs.

Vaccines on the Hill III

26 Sep

Somehow I never thought there would be a “Vaccines on the Hill II”, much less III. That said, a question from Lisa (from about.autism.com) got me thinking and, well, I’d rather do this a post than a response.

I admit, this isn’t directly related to her comment, who commented on how David Kirby makes a point of stating he is not “anti-vaccine”.

Instead this is about frustrations with Mr. Kirby. As an example, let’s discuss how Mr. Kirby “quoted” a response that the CDC made to an NEIHS report in his congressional briefing. Yes, “quoted” is in quotes for a good reason.

On his presentation, page six, Mr. Kirby “quotes” (there’s those quotation marks again!) the NIEHS report:

NIH: “We identified several areas of weakness that were judged to reduce the usefulness of the VSD for addressing the potential association between exposure to thimerosal and risk of ASD.”

With the response from Dr. Gerberding at CDC of:

Gerberding General Response: CDC CONCURS

What was the real quote?

The panel identified several serious problems that were judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of AD/ASD.

Emphasis mine.

Yep. Mr. Kirby left out the fact that the NIEHS was specifically talking about ecological studies.

Makes a BIG difference in how that phrase is interpreted. This was a major part of two epiwonk blog posts, here and here. Mr. Kirby’s original blog post on this was retracted, so Mr. Kirby is well aware of the importance of the fact that the NIEHS limited the statement to ecological studies.

By the way, the real CDC response?

CDC Response: CDC concurs with this conclusion and does not plan to use VSD for ecological studies.

They did most certainly not concur with the statement that Mr Kirby “quoted”. Instead, they see the limitation for ecological studies. There is strength in using the VSD. They don’t see it as valuable for discussing the thimerosal/autism question, as we’ve discussed before.

Here’s the NEIHS report, and here, the CDC response.

Mr. Kirby’s “quote” of the NIH was incorrect. This isn’t incorrect in the way Dan Olmsted thinks that “has” vs. “have” is an important difference. No, the quote by Mr. Kirby completely changed the very meaning of the statement that NIEHS made and implied the CDC concurred with.

It sounds like Mr Kirby was caught red-handed trying it too, by a staffer who obviously came in very well informed. The bright side is that the legislature got an idea of Mr. Kirby’s tactics. The down side, they may not realize that the entire autism community is not represented by Mr. Kirby and his tactics.

This misinformation effort has already had an effect. Mr. Kirby’s original treatment of the CDC response made people think that the CDC position is that the Verstraten study was flawed. As epiwonk makes very clear, the opposite is true. The NIEHS panel suggested expanding the Verstraten study (which was not ecological) with additional years.

And people wonder why I get frustrated with Mr. Kirby.

Mother Warriors – the cost

26 Sep

I recently posted an entry about the health costs being one of Jenny McCarthy’s Mother Warriors can exact on the Mother Warrior in questions kids. It was a pretty horrific litany of blown veins, heavy medications and screaming kids being restrained by adults in order to receive IV Chelation. Sometimes in babies as young as 13 months.

Today I thought we might take a look at the range of treatments on offer and how, in order to be a true Mother Warrior, you are expected to know them all.

Stan Kurtz recently produced a list (PDF) of the typical treatments one of Jenny McCarthy’s Mother Warriors are expected to know and use. There are a mindboggling 150+ different treatments.

Of course, a parent is not supposed to use all 150+ in one go. No, they are expected to use the ones that ‘work best’ for them. This is of course under the care of a DAN doctor – who sometimes might actually be a doctor, sometimes they might not.

In reality, what we have is a list of things that are used on a trial and error basis. There is absolutely no way to know which are having an effect and which are not. Even the most simple test of – is my child ‘less autistic’ than they were before is not an accurate judge. It is well know that autistic kids improve with age and to be perfectly frank, most of the ‘recovery stories’ I’ve read are stories of kids who are still very much autistic and really not in a very different place than my own.

A Mother Warrior on her blog reports the cost of ‘recovering/curing’ her autistic child:

$15,039

Here’s the breakdown:
DAN Doctors $2000
GI Doctor $6000
Private Labs $2000
Supplements & RX $2000
Speech & ABA $3000

Additionally, we spent $500 for respite care once a week (a special needs babysitter). We also paid an unknown amount in expensive GFCF foods, like $6 per bag of wheat-free pretzels….

In 2008, we will add the additional expense of IV chelation at $320 a month.

And how do they describe their child now?

After implementation of the gluten-free, casein-free (GFCF) diet, our son regained eye-contact and lost the repetitive behaviors. Six weeks after initiating an anti-fungal drug to counter the yeast overgrowth in the intestines, our non-verbal almost three-year-old child began to speak and gesture. He gained 120 new words in two months. We supplemented specific vitamins and minerals, and we saw evidence of his immune system starting to respond properly. After treating the gut inflammation with anti-inflammatory drugs, he began to eat a better variety of foods and started toilet training.

………

He is now four years old, and he speaks in simple sentences. He has mastered letters, numbers, colors, and shapes. He sings songs and laughs at humorous things. His demeanor is sweet and cute. He will attend preschool with his peers this fall. All of his special education teachers and therapists are amazed by his unprecedented progress.

I always feel deeply saddened when I read stories like this. This is just simple development and education. I know so many autistic kids who are at similar stages of development and/or could report near-identical things. And yet these parents have near bankrupted themselves for no real reason.

This is far from an unusual situation. A 2005 survey reports:

The mean number of current treatments being used by parents was seven….

These parents are bankrupting themselves and the DAN fraternity et al are watching the money come rolling in.

Getting back to Chief Mother Warrior McCarthy. Apparently in her new book and on Oprah she veered between describing her son as ‘recovered’ and ‘recovering’:

…And lets get back to where this started. Jenny said her son Evan, HAD autism.

This surprised me because in her both of her books she repeatedly says he is IN RECOVERY or RECOVERED from autism. She doesn’t ever say CURED – though it is implied. In her book she says that if/when he is sick – his symptoms of autism resurface. So, then it is not really ‘gone’, right? And all the biomedical treatments did with him (the gfcf diet, supplements, threelac, b12, [chelation/HBot]) does she no longer need to do these? I’m just thinking out loud.

This isn’t the first time McCarthy has cut her message to her audience with no regard for the accuracy of what she’s saying:

So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.

Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation?

Apparently, at the last Autism One conference, McCarthy was asked about the expense of treatments. She answered:

I just need you guys to be creative in your thinking and say we’re going to give up Starbucks this year.

Does anyone you know have a coffee habit of $15k per year?

Jenny McCarthy isn’t living in the real world. A massively well-off celebrity lecturing people to give up a coffee in order to finance a totally fabricated treatment schedule that she can’t decide from one month to the next has cured her son or not? And people _listen_ to her? People give her _credence_ ?

Katie Wright was interviewed by Jenny McCarthy for her new book. Another rich Warrior Mother who doesn’t live in the real world where scrabbling to make ends meet is the first priority. Not ‘living in the moment’ and not really having to worry about where the next months food is coming from.

Warrior Mothers? These people have fought for nothing.

U.S. Ammends the Americans with Disability Act (ADA)

26 Sep

Almost lost in all the discussions of $700B bailouts, president Bush today signed the ADAAA (lets hope they don’t have to amend that–the ADAAAAA).

The Americans with Disabilities Act, as you might imagine, gives certain rights to people with disabilities. It’s what’s behind the 504 plans that some students have who don’t have IEP’s (individual education plans). The ADA also applies to adults, say requiring accommodation in the workplace.

Unfortunately, since the original ADA was passed, court decisions have limited the scope of the ADA. Basically, the amended ADA attempts to restore the original intent of the ADA.

This means that the ADA will again apply to a broader group, likely including, for example, diabetes, epilepsy, HIV-AIDS…and, it looks like Aspergers and other of the so-called “mild” ASD’s should get better protection.

Another way to look at this is part of the statement by COPAA (the Council of Parent Attorney Advocates) which stated,

First, the ADAAA overturns in large part the Supreme Court’s decision in Sutton v. United Airlines, which held that people with disabilities were not eligible under the ADA if their conditions could be mitigated by medication, assistive technology and equipment, or learned behavioral adaptations. The law also overturns Sutton’s holding that a disability must limit more than one major life activity. Moreover, the bill will clarify that major life activities include working, communicating, concentrating, thinking, reading, and other activities of central importance. Although Sutton arose in the ADA context, its holding was equally applicable to 504 cases, and thus, the override is made applicable to 504.

I need to look closer at this, but it really looks like a major, good event.

Autism's False Prophets selling well

26 Sep

“Autism’s False Prophets” has caused quite a stir in the autism-vaccine advocacy community. They started early and they worked somewhat hard to defuse the book’s impact. Consider an earlier post on the Age of Autism blog. This was titled “Phalse Profits: Offit’s Book Peaks At 8,173“.

The 8,173 was the rank of the book in Amazon.com. The blogger apparently had been watching day by day and noted the book’s rank. After the initial peak, the blogger reported back.

The blogger was trying to make a point that Dr. Offit’s book isn’t being purchased in high numbers. I never expected it too. As I write this, it has risen to #779. It was at 715 yesterday, but I haven’t been watching that closely to see if that was the “peak”. Not too shabby. It is also number 1 in a few categories, including:

Books > Science > Medicine > Administration > Policy > Health Care Delivery
Books > Science > Medicine > Administration > Policy > Public Health
Books > Professional > Technical > Professional Science > Biological Sciences > Biology > Microbiology

I don’t expect Age of Autism to write a correction. Then again, I didn’t expect longtime vaccine-autism activist Rick Rollens to admit that MMR doesn’t cause autism, so who knows?

In my mind I find an interesting analogy to Mark and David Geier declaring that the CDDS autism count showed “early downward trends”, indicating that, yes, thimerosal caused autism.

They seemed to stop watching and didn’t report back when it turned out that the “early” trend was, in fact, false.

They left that up to Schechter and Grether…

But, I digress. Autism’s False Prophets is not the kind of book to become a best seller. Too bad, really, as it is quite well done. But, that is not to say that the book isn’t doing quite well.

Good for whatever autism research group gets the proceeds. Yep, Dr. Offit is donating the proceeds to autism research.

Vaccines on the Hill part 2

25 Sep

We recently discussed the Malony briefing where she hosted David Kirby and Mark Blaxill in a discussion of autism and vaccines. As part of that post, I included a letter from Amy Pasani of Every Child By Two.

On a hunch, I checked with another organization, Voices For Vaccines, to see if they had contacted legislators. Lo and behold, they did:

Dear Senator or Representative:

The organizers of a briefing being held later today have listed your office as one from which a staff member will be in attendance. I would like to supply some information which may place the content of the briefing in context.

Today’s event, sponsored by Rep. Carolyn Maloney, will feature Mr. David Kirby and Mr. Mark Blaxill speaking on the claim that vaccines cause autism. This is a notion which is not supported by scientific evidence. It is also one that has been recognized by the mainstream medical community as posing a threat to the health of Americans.

I am attaching an Open Letter to Congress, issued last June, in which 84 national, state, and local organizations emphasized their support for immunization as a cornerstone of United States public health, and made clear their desire for Congress to follow a sound, evidence-based course in evaluating legislation related to vaccines. As you are undoubtedly aware, this year brought a sharp upswing in cases of measles, most of which were associated with importation of the virus by unvaccinated individuals. These outbreaks reflect vaccine reluctance borne of misplaced fears. The agenda for today’s briefing indicates that it will fan, rather than quell, those fears.

While the presenters will no doubt couch their claims in scientific-sounding language and the rhetoric of impending doom, you can rest assured that no new information has emerged to lead credible scientists to raise concerns about vaccine safety. The popular concept of an “autism epidemic” is largely, if not wholly, an artifact of diagnostic shifts and a broadened definition of autism. There has been no government concession that vaccines cause autism, only that they might have hastened the appearance of autistic-like features in one Vaccine Injury Compensation Program claimant. What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

For further information on these topics, I recommend the following sites:

Centers for Disease Control and Prevention – Autism http://www.cdc.gov/ncbddd/autism

Centers for Disease Control and Prevention – Immunization http://www.cdc.gov/vaccines

American Academy of Pediatrics – Autism http://www.aap.org/healthtopics/autism.cfm

American Academy of Pediatrics – Immunization http://www.aap.org/healthtopics/immunizations.cfm

Vaccine Education Center, Children’s Hospital of Philadelphia http://vaccine.chop.edu

Best regards,

Lisa H. Randall, J.D.
Interim Executive Director
Voices For Vaccines
325 Swanton Way
Decatur, GA 30030
http://www.voicesforvaccines.org

If the reaction to Ms. Pisani’s letter is any guide, one sentence in the letter above will be particularly targeted by some vaccine-autism advocacy groups:

What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

Some may complain about that, but not me.

Keeping the theme used for the previous post, I’ll close with this statement:

Why reproduce the Lisa Randall’s letter here? Because many in the greater autism community agree with Ms. Randall. This blogger certainly does. I hope that legislators know that members of the autism community side with Voices for Vaccines on this subject.

← Older Entries