Archive | Advocacy RSS feed for this section

A better future for autistic adults

29 Apr

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

Tags: , , ,

Powerful Autism public service announcement

16 Apr

Autism Steals….

Autism leaves an empty shell…

These are autism myths. This public service announcement is a good video to show people to address these (and other) myths–it is professionally done and carries a simple yet powerful message.

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the PSA.

Leave the old stereotypes behind.

Very well said.

[edit]
Ari Ne’eman is correct–there is a national discussion on autism, and it is happening without the autistics. That is wrong.

Here is the captioned version (thanks codeman38!)

http://www.overstream.net/swf/player/oplx?oid=udtvrbt0rlao&noplay=1

Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

Tags: , , ,

Speaking clearly

12 Apr

The Canadian Journal of Medicine have an interesting article by MacDonald and Picard pleading for clearer language to be used by academics. In
particular they note the potential for different audiences to make
different conclusions from the 2001 Institute of Medicine report
looking at the relationship between MMR vaccine and autism.

The conclusion in the executive summary of the 2001 Institute of Medicine report about the relation between the measles–mumps–rubella vaccine and autism provides an excellent example of potentially confusing academic language. This conclusion was carefully crafted in precise academic language — so precise that, depending on the reader, different conclusions can be drawn. The academic involved in vaccine research, familiar with the scientific principle that the null hypothesis cannot be proven, would conclude that this report does not find evidence that the measles–mumps–rubella vaccine causes autism. A health care worker reading this same statement may not be sure what to make of it: maybe the vaccine causes autism in some children, just not often. The politician may wonder whether supporting public programs for measles–mumps–rubella vaccination at this time is justified. The journalist may reasonably interpret the conclusion as saying that the vaccine is a cause of autism, albeit an infrequent one. The antivaccine lobby, for its part, would be delighted that this respected academic body has given support to its claims that the vaccine can cause autism.

Go and have a read, and compare the actual IOM conclusion with
MacDonald and Picard’s proposed conclusion. Their arguments have
merit, particularly when it comes to the media interpretation of study or report findings. However, I’m not so sure about the anti-vaccine movement, who will deliberately misrepresent studies to prove the complete opposite of what they say, but we can at least stop giving them easy ammunition with which to dupe others.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

Evidence of Autism in a Psychiatrically Hospitalized Sample

4 Nov

I’ve been meaning to write something on this for a while. This was a talk given at IMFAR this year (2008) by one of my favorite research groups–that of Prof. David Mandell. If you’ve listened in on IACC meetings you’ve heard him. Much more, if you have been watching the literature, you’ve likely seen his papers.

Prof. Mandell asks a lot of questions that I think are important and, all to often, overlooked. As an example, he has documented the late diagnoses of ASD’s in ethnic minorities in the United States.

One presentation at IMFAR that caught my eye was:

Evidence of Autism in a Psychiatrically Hospitalized Sample

The abstract is quoted below:

L. J. Lawer , Psychiatry, University of Pennsylvania, Philadelphia, PA
E. S. Brodkin , Psychiatry, University of Pennsylvania, Philadelphia, PA
D. S. Mandell , Psychiatry, University of Pennsylvania, Philadelphia, PA

Background: The similarity of the symptoms of ASD with other psychiatric disorders, and the fact that misdiagnosis may lead to inappropriate treatment, has led to interest in the prevalence of ASD in psychiatric populations. The four studies in this area have estimated the prevalence of ASD in adult psychiatric samples to be between 0.6% and 5.3%.

Objectives: To determine the potential prevalence of ASD among psychiatric inpatients and characteristics that discriminate between adults likely to have ASD and other psychiatric disorders.

Methods: The sample included 350 out of 396 patients in one state psychiatric hospital in Pennsylvania. Nursing staff completed the Social Responsiveness Scale (SRS) for each subject. Chart reviews were conducted to examine functioning and medical history. T-tests and chi-square tests were used to examine differences in clinical presentation, putative diagnoses, and medical history among patients scoring above 100 on the SRS (a score highly specific for autistic disorder in the general population) and patients scoring below 100.

Results: Twenty-one percent of patients received an SRS score over 100. They were significantly more likely than other patients to be diagnosed with undifferentiated schizophrenia (30% vs. 22%) and have indication in their charts of childhood onset or a “long history” of psychiatric problems (68% vs. 50%), not starting high school (20% vs. 8%), abnormal movements (20% vs. 10%), gastro-intestinal problems (34% vs. 23%), and mental retardation (15% vs. 5%). Analyses of differences in medication use and self-injurious behaviors are ongoing.

Conclusions:While not conclusive regarding the prevalence of ASD in a psychiatric inpatient sample, these findings are provocative and suggest the need for further research. We currently are conducting patient and family interviews to augment existing data. Improved diagnostic assessment for adults with ASD, especially those that discriminate ASD from the negative symptoms of schizophrenia, may have important treatment implications.

The majority of the overall population had schizophrenia diagnoses (80%), with personality disorder, substance abuse and mental retardation diagnoses also present.

The researchers had nurses test inpatients using the Social Responsiveness Scale (SRS), and found that a significant number (21%) of the inpatients scored in a range indicating an ASD.

3% of those with SRS scores >100 had an existing ASD diagnosis. Compare that to 1% of those with scores <100 on the SRS. But, you can see that with 21%, this inpatient population had a much higher autism rate than the roughly 1% expected for the general population.

Interestingly, there was a higher rate of GI problems in those with high SRS scores.

The ages? These are adults. Not just young adults, either. They ranged in age from 20-82, with an average of 49 (SD of 13) years.

Why is this important? There are many reasons. First, before this study was presented at IMFAR, the results were referenced by one of the world’s top-cited autism researchers, Nancy Minshew, in a news article.

The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

There is even a kind of logic to that, Dr. Minshew said, because some of the hallmarks of schizophrenia — behaving oddly, a lack of facial expressions, poor eye contact, speaking in a monotone and using fewer gestures than normal — are “essentially the same” in both autism and schizophrenia.

David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic.

The response? Dr. Minshew was openly mocked by “advocates” who apparently couldn’t see past the fact that these results pose a challenge to the “epidemic”. Kim Stagliano, in a Huffington Post Piece, was annoyed that Dr. Minshew would say that in her experience there is “not an increase in the number of cases, but are an improvement in recognition.” On the age of autism blog, Ms. Stagliano went on to say,

Does your child, or do you (if you are an adult with autism) appear schizophrenic*? Has any doctor or therapist ever uttered the words schizophrenia and autism in the same sentence to you?

This declaration of Dr. Minshew’s is repulsive and offensive to all people with autism. All people with autism, regardless of what you think of cause or treatment.

Amongst the mistakes Ms. Stagliano makes in the above is asking the wrong question. The question is not “do people with autism appear schizophrenic”, but, rather, do people with schizophrenia (and other) deserve diagnoses have autism? Further, are these people misdiagnosed or do they deserve autism in addition to their other diagnoses?

Ms. Stagliano isn’t the only one to attack Dr. Minshew’s statements without thinking them through (Dr. Minshew’s statements made it clear that she was basing her statements on actual studies, not just her opinion). I’d like to point out that I didn’t bring Ms. Stagliano’s comments in as a mere sidetrack. Much as the comments annoyed me, they point to a more important, systematic problem: The “advocates” of the past 10 years have made a big mistake in concentrating solely on children with autism.

First and foremost, it is wrong to the allow fellow citizens to go without proper supports. This is especially true if (as noted in the talk) there is the possibility of de-institutionalizing these people. We must insure that these adults and those who will care for them have a proper understanding of the real issues each adult faces.

Second, it is just plain short-sighted. For parents of children with autism, autistic adults are the great untapped resource. We have much to learn, much that will help our children. It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

I don’t know a better way to emphasize this than to restate it: It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

[note: I edited this piece for clarity and emphasis after posting. The substance was not changed]

Story Time With Darwin

24 Oct

When Autism’s False Prophets hit the shelves–heck even before–there was a lot of buzz in the online community. Lot’s of reviews were posted on blogs. There seemed to be a strong correlation between people who actually read the book and people who favorably reviewed the book. AFP was chosen for the Science Blogs Book Club.

There have been a lot of approaches to discussing Autism’s False Prophets online, but I don’t think I would have ever predicted this:

Darwin-AFP Introduction

Yep, someone (not just someone, and autistic adult) reading from Autism’s False Prophets.

I saw that video and thought, “AFP isn’t a really long book, but there’s no way that this guy can cover much of the book.”

I underestimated the will and stamina of Darwin. He has 59 videos up. He’s at least to chapter 8.

Here’s a “commercial” for the YouTube series. You gotta click on this one. It’s short, and made me laugh out loud.

Darwin-AFP commercial

Note: I’m having a little trouble embedding the YouTube videos. I hope to figure that out soon.

Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani’s letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

The Autism Hub stretches its wings some more

18 Sep

Mike from Action for Autism is heading down to London for the NAS International Autism Conference on behalf of the Hub tomorrow.

This continues the great work Steve started back in the winter of 2007/08 and carried through during the early part of this summer at USD.

I am utterly thrilled to see the Hub gaining such prominence amongst the scientific elite of American society and the group I feel is the most ‘ND’ friendly in the world – the UK’s National Autistic Society. It really does feel like the right people are listening to Hub members and so the right message is gaining prominence.

Mike’s presentation introduces the Hub to the NAS audience and goes through the history of how the web has traditionally been used in autism advocacy and how the Hub tries to redress the imbalance.

I have been tangentially involved in Mike’s preparations in my role as a designer but I would have loved to have been able to stand alongside Mike at the conference and showcase the Hub. One day.

The future of the Hub is very, very bright. All Hub members are involved in discussing how to take the Hub forward and what should be next. Dave and HJ are managing what is a very fluid process and I am really excited to be part of that team of dynamic and forward thinking individuals.

Go Hub!!

Really bad blogging by Sharyl Attkisson

9 Sep

As I noted before, My fax complaining that Ms. Attkisson missed the big story in the autism/vaccine discussion just about the same time she was posting on exactly that story (the Hornig MMR paper).

Ms Atkisson’s blog post is titled

New Study Disproves Vaccine/MMR/Autism Link

Wow. I didn’t expect to see that from Ms. Attkisson.

Below is the full extent of Ms. Attkisson’s contribution to the piece

There’s a new study in the Public Library of Science regarding vaccine measles and autism which purports to disprove a vaccine/MMR/autism link.

Also, researchers at ThoughtfulHouse wrote an opposing analysis:

She then posts the ThoughtfulHouse press release. No kidding, of the blog piece, 90% (an estimate on my part) of the words are written by someone else! And, not even the researchers involved.

Dang. Recently we have seen a lack of homework on the Dr. Offit conflict of interest story, and now this.

At least there was some effort put into the story on Dr. Offit.

What happened to the CBS I grew up with? I can’t see Walter Cronkite getting paid for “Richard Nixon has resigned in disgrace. Now, here is Mr. Nixon’s press release verbatim.”

← Older Entries
Newer Entries →