Autism Speaks softens message on vaccines?

24 Aug

That is the message of a recent article by Mark Roth, Autism group softens stance on vaccines .

Autism Speaks, the nation’s largest autism advocacy group, recently made its clearest public statement yet that minimizes the link between vaccines and autism.

Mr. Roth discussed a recent statement from the Autism Speaks website by Dr. Gerri Dawson, Autism Speaks’ chief science officer. He quoted Dr. Dawson as stating:

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

It has been, well, interesting watching the reaction to Autism Speaks in the past few years. As recently as two years ago, the vaccines-cause-autism organizations were highly critical of Autism Speaks for ignoring the vaccine question. In fact, it seems like just this year that Autism Speaks “outed” itself as supporting the vaccines-cause-autism idea. This occurred when Alison Singer was forced to resign from Autism Speaks since she wouldn’t vote for vaccine-causation research in the IACC.

From my perspective, this “softened” stance by Autism Speaks is still a stronger message than they were sending a year ago.

This all begs the question: why did Autism Speaks soften their message?

I can speculate (and that is all this is, speculation). First, the vaccine question is highly charged. My guess is that Autism Speaks put off making a definite statement as long as possible. When Alison Singer resigned over her vote in the IACC (voting to remove vaccine research from the funded projects), Autism Speaks was forced to make their views public.

The departure of two key people, Alison Singer and Eric London over the vaccine question was not good publicity for Autism Speaks. Much more, the creation of the Autism Science Foundation gives potential donors a second viable option for an autism research charity that doesn’t fund vaccine-causation research (the first being the Simons Foundation).

What is odd about Dr. Dawson’s comments is this: If there is no evidence that thimerosal causes autism, why does Autism Speaks fund thimerosal research? Here are grants from 2008:

Differential Effects of Thimerosal on Cell Division and Apoptosis in Normal vs Autism Spectrum Disorder Cell Lines ($60,000 for one year)

and

Vulnerability phenotypes and susceptibility to environmental toxicants: from organism to mechanism ($330,000 over 3 years)

Specifically, thimerosal and other vaccine adjuvants will be studied.

(sidenote: Thimerosal isn’t an “adjuvant”)

and

Analysis of developmental interactions between Reelin haploinsufficiency, male sex, and mercury exposure ($324,340 over 3 years)

and

Etiology of Autism Risk Involving MET Gene and the Environment ($659,100 over 3 years)

The next line of experiments will examine the relationship in an even larger sample, and assess the functional effect of the MET gene polymorphism on immune cell activity, and to further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Is Autism Speaks softening their “message” or softening their “stance” on whether vaccines and/or mercury cause autism?

Massachusetts General Hospital to add program on autistic adults

23 Aug

Massachusetts General Hospital (MGH) has received a $29 million grant to expand its pediatric autism program to a program that also gives comprehensive care to adults.

From the Boston Globe:

The hospital plans to announce Tuesday that it will receive $29 million, the fourth- largest gift in its history, from Nancy Lurie Marks and her family foundation in Wellesley, in part to add a major adult component to its pediatric autism program. The money will also allow the hospital to expand its services for children with autism, who now wait up to a year for an appointment, conduct extensive research, advocate for patients, and train physicians.

The Nancy Lurie Marks foundation describes itself as:

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

The foundation was established in 1977.

This is a great step forward. As the story notes, autistics often stay with their pediatricians well into adulthood for lack of better options.

The Boston Globe quoted Peter Bell of Autism Speaks:

Bell said that while he knows of two autism clinics in the United States that treat adults, nothing “comes close to the kind of plan Mass. General is looking at. This is tremendously exciting, and I hope others will follow.’’

I agree. This is tremendously exciting and I hope others will follow.

Autism “is treated as a childhood disorder but it’s lifelong,’’ said Clarence Schutt, director of the Wellesley foundation, which is a leading funder of autism research and whose grant to Mass. General is its largest ever.

Autistic Somali man denied return to Canada

21 Aug

If true, this is a travesty of justice.

According to a recent story in CBC news, a naturalized Canadian citizen has been stuck in Nairobi for three years. The man, Abdihakim Mohammed, is 25 years old, and autistic.

Here’s the story, in brief: Mr. Mohammed was born in Somalia and emigrated to Canada with his mother in 1990, at about age 6. He is a Canadian citizen. A psychiatrist recommended that he travel back to Somalia with his mother, with the idea that this might improve his communication and social skills.

His mother returned to Canada first, leaving Mr. Mohammed in Somalia. Fearing that he might lose his passport, she kept it in her possession. Officials in Canada took the passport on the grounds that it was in the possession of someone not the owner.

When Mr. Mohammed’s grandmother took him to Nairobi to try to send him back home, he was denied travel. His citizenship card was not enough to convince officials that he is who he claims to be. That was in 2006. He has been unable to leave Nairobi since.

In a classic catch-22, his mother can apply for a passport on his behalf if she can get a court order granting her guardianship. But, in order to do that, Mr. Mohammed must be present in Canada. So, she can bring him home to Canada if she can bring him before a court in Canada first.

Mr. Mohammed has offered to undergo DNA testing to prove his identity.

Note: I wrote a similar post a few days ago, but I managed to overwrite it with a different post. If you have a sense of deja vu, that is why.

IACC comment time: No more procrastinating!

21 Aug

If you are like me you have put off submitting comments to the IACC.

If you are like me you need a reminder.

If you are like me you are in danger of missing the deadline.

Any thoughts about autism research? Let them know. Let them know if you think they are doing a good job or a bad job. Let them know if you think they should put more or less effort into any area.

Let them know here.

You don’t have to answer all the questions. You don’t even really have to stick to their format (if you hit “continue a few times, you get to an they even have an “other information” question).

I was going to try to write this without referencing groups that have opinions I disagree with. However, here is a comment from the Age of Autism blog on the IACC:

Answering their questions made me ill. The idea that their research intiatives include “where do I turn for help” and “what does the future hold”. What a ridiculous drain and distraction from important things such as treatment and prevention.

“What the future holds” is the category for adults with autism. Only 5% of research funding goes towards such research.

Even if the research funding wasn’t that small:

If you feel, like I do, that research into areas such as services for autistic adolescents and adults are important. If you feel that there is room for anything beyond just “treatment and prevention”. If you don’t want your opinion dismissed as “..a ridiculous drain and distraction from important things…”, the time to be heard is now.


It only takes a minute.

Read this article in O magazine

21 Aug

You read that right, I am sending people to read an article in Oprah Winfrey’s “O” magazine.

I’ve been waiting for the article, An Inconvenient Youth: Raising Children with Autism to appear online since reading some discussion about it on the net.

I am happily surprised that Oprah’s magazine would have such an article, given her support for a certain celebrity autism “advocate”.

That out of the way, the story is really worth the time to read it. It isn’t perfect, but, hey nothing (and that includes my pieces) is.

Here are some quotes:

Accepting the “A word” requires a learning curve. “You graduate to it,” says Erin. “Because this is about: Let’s call it what it is, let’s deal with it together.”

and,

And that leads to a bigger issue—one that really burns this group: the implication that accepting your child’s autism is not okay….The simple fact is that not all autistic kids can “recover.” “We need to reexamine what it means to be a successful adult,” says Erin. “To me, now, a successful adult is a functional adult.

and

At this point, however, society still has a long way to go in terms of tolerating people who behave in unfamiliar ways.

Lisa Jo Rudy at autism.about.com has already blogged this. I am very interested in hearing other people’s opinions.

sound advice: pediatricians Answer vaccine questions

20 Aug

Below is a press release from the American Academy of Pediatrics. This isn’t really about autism. But, the autism parent community is one of the biggest sources of misinformation about vaccines. I don’t mind pitching in to help AAP get some quality information out.

CHICAGO — Parents who are doing their homework on their child’s vaccines can go directly to the experts for answers – without leaving home. The American Academy of Pediatrics (AAP) offers a series of audio interviews with pediatricians, researchers, advocates and other parents at http://www.cispimmunize.org/fam/soundadvice.html.

Interviews include a conversation with former First Lady Rosalynn Carter, who discusses her passionate crusade to ensure all children receive life-saving vaccinations. Dr. Richard Besser, the pediatrician who became the public face of the government’s swine flu response in spring 2009, offers advice to families preparing for a future epidemic. Dr. Ari Brown, author of the popular “Baby 411” guides, dispels common vaccine myths. And Dr. Harvey Karp, the pediatrician who has coached thousands of new parents through his “The Happiest Baby On The Block” book and DVD, explains in clear, easy-to-understand language why vaccines are not related to autism.

Parents can listen first-hand as experts address specific questions related to immunization:

Why is it important to vaccinate on time?

What vaccines do adolescents need?

Why should infants get the Hepatitis B vaccine?

Why do kids need the flu shot?

Are some children extra-sensitive to vaccines?

Why are vaccines required for school entry?

August is National Immunization Awareness Month, which is a perfect time to remind people of all ages to catch up on their vaccinations. On the AAP’s Sound Advice page, parents can hear personal stories of people who have been affected by vaccine-preventable diseases. Frankie Milley lost her only child, Ryan, at age 18 to meningitis; she went on to found an advocacy organization devoted to protecting other children from the disease that took her son’s life. Pediatrician Anna Lincoln tells how pneumococcal meningitis threatened the life of her previously healthy infant son, Wiley, before a vaccine was available to prevent the disease. Now she counsels parents in her practice on vaccines.

“I welcome the questions,” Dr. Lincoln said. “I want parents to understand the vaccines, to understand why they’re important, to feel good and comfortable and confident in their decision to vaccinate their children. Although the diseases may seem low risk, they are not. We have to be diligent about continuing the schedule, because it can easily creep back to how it was before the vaccines, which was a time when children could be smiling one night, like Wiley, and the next morning, be fighting for their life in the intensive care unit.”

An interview with journalist Arthur Allen looks at how the media report on immunizations, and the resulting impact on public health. Ken Reibel, creator of the AutismNewsBeat blog, talks about his son’s diagnosis with autism. The audio interviews also include a message from actress Amanda Peet, who has partnered with the advocacy organization Every Child By Two to give parents the information they need about immunizations. Amy Pisani, executive director of Every Child By Two, and Mrs. Betty Bumpers, who co-founded the organization with Mrs. Carter, describe their personal reasons for promoting immunization.

Additional interviews feature pediatric infectious disease specialists Dr. Joseph Bocchini, Dr. Meg Fisher and Dr. Paul Offit; Dr. Judith Palfrey, president-elect of the AAP; Dr. Renee R. Jenkins, immediate past president of the AAP; and Dr. David T. Tayloe, Jr., president of the AAP.

“Parents are natural advocates for their children’s health,” Dr. Tayloe said, “and the AAP wants them to have the information they need about immunizations so they can make the right choices. The internet is peppered with inaccurate information about vaccines. We want parents to have a trusted place they can go for reliable advice. It’s important that immunization rates remain high or innocent children will become at risk for vaccine-preventable diseases.”

All the interviews can be downloaded to an mp3 player. Edited transcripts are posted.

The AAP has additional resources about immunization for parents and journalists:

Vaccine Studies: Examine the Evidence
o http://www.cispimmunize.org/Vaccine%20Studies.pdf

Facts for Parents About Vaccine Safety
o http://www.cispimmunize.org/fam/facts/VaccineSafety_English.doc

The Vaccine Schedule: Why is it Like That?
o http://www.cispimmunize.org/pro/pdf/Vaccineschedule.pdf

Questions and Answers About Vaccine Ingredients
o http://www.cispimmunize.org/pro/pdf/Vaccineingredients.pdf

Vaccines: What Every Parent Should Know
o http://www.aap.org/pressroom/aappr-features.htm

Schizophrenic Man Terrifies Kids at Party

20 Aug

What image came to your mind when you read “Schizophrenic Man Terrifies Kids at Party”.

Well, you can watch if you’re brave enough (see below)

I could easily see this being done with “Autistic Man (or Woman) Terrifies Kids at Party”.

It isn’t right to stigmatize autistics. It isn’t right to stigmatize people with psychoses.

This isn’t to say that there aren’t challenges for schizophrenics or autistics. This isn’t to say that there aren’t challenges for loved ones of schizophrenics or autistics.

But why add to the challenges with stigma?

ASA-York billboard to come down

20 Aug

Just got this story in my inbox: After objections, autism billboard coming down.

As has been discussed here and elsewhere, ASA-York had a billboard that, well, was offensive to many autistics.

“It seems to send a message that we aren’t fully present in our own bodies,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. Autism York might have been shooting for an “edgy” message, but its billboard was eerily reminiscent of the NYU Child Study Center’s ransom-note-style advertising campaign in 2007, Ne’eman said.

ASA-York has agreed to remove the billboard:

Autism York has agreed to take down a controversial billboard on Route 30 after disability rights advocates said the sign unfairly compares autistic people to kidnapping victims.

I appreciate them pulling the billboard.

Autistic Rose Gardeners

19 Aug

This is the kind of news story I like to read: Program helps the jobless and people with autism.

This came out of some sadness: Connecticut’s last rose farm had to shut down do to competition from overseas. But, now they are reopening:

The renewed effort at the rose farm is the initial project of a new program called Growing Possibilities. The plan is to create a model that will show just how valuable those with developmental disabilities can be in the workforce.

The plan seems ambitious on multiple levels. Here’s another quote from the story:

“It’s kind of a marriage of people that want to work with an industry that has been facing challenges here,” said Thomas Fanning, president and chief executive of Ability Beyond Disability, a Bethel-based non-profit support agency Ability Beyond Disability is providing the funds to reopen the farm, and plans to raise $1.6 million to run it over the next two years, employing 15 people on the autism spectrum. The goal is to achieve profitability after two years and sustain it, Fanning said.

The organizations involved, the Connecticut Autism Spectrum Resource Center and Ability Beyond Disability appear pretty reasonable on a quick scan through their websites.

I really like to see more programs like this: programs involving adolescents and adults. We need more (much more) of this in our world.

Rex Reed is just plain ignorant

19 Aug

OK, he’s also insulting.

Mr. Reed, movie critic, has reviewed the movie “Adam”.

I know I am late out of the gate on this one. Mr. Reed’s review was a few weeks ago, and many others have discussed it on blogs and discussion groups (for example, abfh’s Rex Reed Spouts Disgusting Bigotry and one of the discussions on wrongplanet) . In the end I just had to write something.

Here is a quote from Mr. Reed’s review:

Far from just another exotic Disease of the Week, Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves. Challenged by social interactions and given to obsessive routines that revolve around a single subject of interest, they do not like to be touched, they feel incapable of explaining things and they cannot cope with people in general. Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others. They cannot look you in the eye. Adam is a fascinating study of a rare affliction in which all of these qualities are evident, in carefully researched scenes that are humorous and touching. It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

For emphasis, here is one of Mr. Reed’s statements:

“Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others”

I don’t know if Mr. Reed is “emotionally blocked” or if he “meant” to be rude. I know that he has clearly demonstrated the ability to say things that hurt and sting.

Probably the worst statement (and that is saying a lot) is where Mr. Reed asserts: “It is lethal to get involved romantically with any person with Asperger’s syndrome”

What was he (and his editor) thinking when the published that bit of ignorant tripe? “Lethal”?

Let me take Mr. Reed’s concluding statement and change it into one of my own:

Mr. Reed has left me perplexed (how could he make such ignorant and hurtful statements), riddled with doubt (as to why his editor let that paragraph get published) and totally depressed (as to how far society has to go before it gives autistics proper respect).

You can email the editors at the New York Observer at editorial@observer.com. If you try calling, good luck with that general mailbox. Does anyone ever pick that up?

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