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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?

Jenny McCarthy: I’d like to see some action behind those words

18 Aug

Jenny McCarthy is on the cover of the latest Cookie Magazine. As part of her interview, she asserts that she is “pro safe vaccine”, not anti vaccine.

Now McCarthy, along with her boyfriend, actor Jim Carrey, serves on the board of directors of Generation Rescue, an advocacy and research organization that calls for eliminating toxins in vaccines and for delaying shot schedules.

Notice “delaying” shot schedules.

Another quote, talking about her own experiences:

Going over his medical history now, she sees a link between a series of ear infections, a severe case of eczema, and a hepatitis-B booster shot. “Looking back, I’d say, ‘God, if a kid is having more than seven ear infections in a year and he’s got eczema, there are some issues here—his immune system is obviously under attack, and we need to put him in the sensitive category. Let’s just delay some of his shots,’ ” she says. “Not eliminate, delay.”

Again, note the phrease “Not eliminate, delay”.

This isn’t exactly new. The Generation Rescue website page on vaccines tells parents to “consder delaying vaccines”. As near as I can tell, GR has had a statement like this since the vaccines page was first put up.

But here is where actions and words part company for both Jenny McCarthy and Generation Rescue. They have “recommended” vaccine schedules. Their “favorite” schedule, included in their paragraph on “consider delaying” vaccines, states flat out: no live virus vaccines. I.e. no Measles, Mumps, Rubella or Varicella (chicken pox).

That’s not “delay” that’s “eliminate”.

Let’s compare the GR alternative schedules to the CDC recommended schedule, shall we?

The childhood schedule includes vaccinations against 15 diseases:

Hepatitis B
Rotavirus
Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Pneumococcal
Polio
Influenza
Measles
Mumps
Rubella
Varicella
Hepatitis A
Meningococcal

Now let’s check GR, Jenny McCarthy’s organization, and their recommended schedules:

First, GR’s “favorite” schedule only has protection against 4 diseases.

Pertussis
Diptheria
Tetanus
and, Polio

Again, that’s not “delay” that’s “eliminate”.

For their second option, GR claims you can “turn back the clock” and use the 1983 schedule. I don’t know how anyone could think that is supposed to be a “delay” in shots. Here’s the count (6 diseases covered):

Diptheria
Tetanus
Pertussis
Polio
Measles
Mumps
Rubella

As the third option, Jenny McCarthy’s organization suggests you “go Danish” and use the Denmark schedule (7 diseases):

Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Polio
Measles
Mumps
Rubella

Jenny McCarthy *says* she is promoting “delaying” vaccines. Her actions speak much louder than her words.

If you want to say you are for “delaying” vaccines, then change your website. Pretty simple.

Of course, when you do, I’d love to see the science showing that the delayed schedule you pick is safer than the current one.

Autism Epidemic? Not in the NSCH data

17 Aug

There is an epidemic of vaccine-induced autism. Must be, we’ve been hearing this for about 10 years. During that time, many datasets have been manipulated to “prove” the epidemic. The two datasets that come to mind most readily are the U.S. special education data (IDEA data) and the California Department of Developmental Services data (CDDS). Neither were intended for true epidemiology.

That intro should be a warning: be prepared for more armchair epidemiology. Interested in the short answer? A new dataset is out that just doesn’t fit the idea of an “epidemic” of vaccine induced autism. No huge increases in autism counts.

The new dataset available is the 2007 National Survey of Children’s Health. The NSCH data includes questions about autism. So it should come as no surprise that it was spun into support for the “epidemic” already.

As a bit of background, let’s start with the US special education data. It’s a favorite dataset for those pushing the epidemic. Here’s a graph hosted on the Thoughtfulhouse website (click to enlarge):

special ed data supposedly showing an epidemic

special ed data supposedly showing an epidemic

Wow. That’s an epidemic. 16 year olds have an “incidence” (their word) of 0.4 per 10,000 while younger kids are at nearly 20? That’s an increase of 50 times. Impressive. Until we look at the NSCH data.

By coincidence the Thoughfulhouse data are from 2007, the same year as the NSCH data. What happens if we plot the NSCH data like the graph above? Again, click to enlarge. Sorry, I couldn’t format it to look just like the ThoughtfulHouse graph.

National Child Health Survey data on autism

National Child Health Survey data on autism

Doesn’t even look close to the data on the Thoughtfulhouse website. First, the “incidence” numbers for around age 16–0.4 for ThoughtfulHouse’s graph, 93 for the NSCH data. I wanted to graph the data on the same graph, but the newer, NSCH numbers just dwarf the IDEA numbers that ThoughfulHouse used.

Besides the difference in overall magnitude, what about the “epidemic”. What about the huge increases in autism “incidence” or “prevalence”. Numbers like 273% increase, or more, in autism are commonly quoted for the increase in autism diagnoses in the 1990’s. Well, those increases just aren’t observed in the NSCH data. Keep in mind, the 17 year olds in the NSCH data graph were born in 1990. There just isn’t the dramatic increase in an autism count in those data.

There is a a much smaller trend of increased autism count when moving from about age 17 down to about 12. The “incidence” increasing by about 40%. That’s a big number. Not hundreds of percent, but a big number.

The “incidence” goes down for younger kids–which must be partially or completely due to the average age of diagnosis being about 5. There is at least one blogger who is “sparking the debate” that this could be a sign that the removal of thimerosal has resulted in lower autism counts. The same blogger has stated at different times that we should have already seen any drop in the CDDS data and, later, that we won’t be able to see any trends until sometime well past 2010. That’s covering your bases! Either we saw it already, we are seeing it now, or we need to wait until the future to see it.

But, back to the NSCH data. Pretty much, those data are flat for birth year 1995 to 2003. Noisy but flat. That’s when the “epidemic” was in full force.

Or, another way to put it–there is no good evidence of an epidemic in the NSCH data.

Working together to advance respect for autistics

17 Aug

It was over before I knew it had happened. And it ended well.

Joe over at the Club 166 blog spotted a billboard that was, well, rather reminiscent of the “Ransom Notes” campaign billboards that caused a great stir in the autism communities. It appears that Joe spotted this billboard in Lancaster County, Pennsylvania:

York ASA Billboard

York ASA Billboard

Well, Joe blogged it as Could We Have A Little Originality, Please. That was Friday. He then sent the following letter on Sunday.

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

And this led to a “Quick Resolution“.

Along the way, Joe had help from abfh, including her “end of week stupid roundup” post.

Also, ASAN got involved. Here is Ari Ne’eman’s letter discussing what happened:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community’s reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York’s President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

I’m glad to see this advocacy effort pay off so amicably and so quickly.

Evidence of autism recovery

14 Aug

There’s evidence of autism recovery on a vast scale. That is what we are being told by bloggers covering the latest survey from the National Survey of Children’s Health. The survey showed that some parents are told that their kid is autistic, but the kid doesn’t isn’t currently autistic.

The survey is an intersting thing. They call homes and ask a lot of questions about one of the kids in that home. The questions are not just about autism, but about lots of medical topics. They do this survey every few years.

They added some new questions to the survey this time. In the past they just asked if your kid had autism. Now, they have a two part question:

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

followed by

does [the child] currently have autism or ASD

Many of the people who responded “yes, someone told me my kid had an ASD” later responded “No” to “does you child currently have Autism or an ASD”.

Bloggers are saying this means that kids “lost their original diagnosis”. Well, we can’t say that. We don’t know what the *original* diagnosis was. Consider this. We don’t know if a kid had a diagnosis of developmental delay, then someone suggested autism, then later retracted the autism on a formal diagnosis. In that example, the kid still has his “original” diagnosis: developmental delay.

I can feel the eyes rolling as people think, “there he goes, trying to weaken the evidence of recovery with vague statements”.

So, let’s look a data. Let’s dig a little deeper than most. I’m not so good at SAS (the statistical package that is used to read the data), but I think I did OK. Let me know if you catch a mistake and I will correct it.

How many kids had a diagnosis (or just a statement) that they were autistic?

Answer: 1427

How many kids were told they were autistic and later were told they were not?

Answer: 459. About 1/3 of the total.

People stop there and leave it implied that the kids don’t have any diagnoses any more. Bad assumption. Let’s check on that. Let’s look at some of the other diagnoses given in the NCHS.

How many of the 459 now have other diagnoses? Here’s a sample of a few other diagnoses:

219 Developmental delay
27 Speech delay and no developmental delay
8 Brain injury and no developmental delay
65 ADHD and no developmental delay

There may be some crossover between, say speech delay and brain injury or ADHD, but for simplicity I’ll just add them all together to get:

319 of 459 (70%) have one of the diagnoses I listed.

A more simple check: how many of the 459 need supports in school? 97%. All but 14. Yes, parents are being told that their kids “have autism” and the parents are later finding that the kid does not “have autism”. That doesn’t mean that the kids are “recovering”.

Is it possible these kids really qualified for an autism diagnosis at one time? Sure. But, I would assert it is as likely or more that a lot of misdiagnoses were made. That’s if autism diagnoses were ever made. Remember that question?

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

Well, if you pediatrician said, “I think this kid may have autism. Go see a psychologist”, may parents would anwer “yes” to the question. The kid wasn’t diagnosed. Pediatricians can’t diagnose. But his parents were told he/she had autism.

Be that as it may, the bottom line: the idea that the NCHS data shows that kids are recovering from autism is weak at best. The data certinainly doesn’t show kids recovering from autism and becoming typical. Most of the “recovered” kids still have a diagnosis of some sort. Almost all are receiving some sort of support in school.

There is more information in the dataset. A couple of blog posts more, at the least.

Chelation challenge testing: not scientific, not beneficial, may be harmful

13 Aug

Who knows about the toxic effects of mercury? Toxicologists. The premier toxicology group in the U.S, the American College of Medical Toxicologists, represents the doctors who test and treat people suffering from real heavy metal poisoning.

By contrast, many doctors have added chelation to their treatment options due to the false theory that autism is caused by heavy metal poisoning (specifically, mercury). These alternative-medicine practitioners usually depend on non-standard test to “prove” heavy metal poisoning. The favorite seems to be the “challenge” chelation test. In this test, a chelator is given to a person before a urine test. Chelators are chemicals which bind to metals in the body and allow them to be excreted more easily. Thus, if you give a chelator to a person, you expect their urine to show higher levels of heavy metals.

This has been discussed on this blog and elsewhere for a long time.

And now the American College of Medical Toxicologists has come out with an official position statement.

The practice is not scientific. There are no reference values for post-challenge urine metal testing. There is no correlation between actual metal exposure and post-challenge test results.

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

It’s time for post challenge urine testing to end. It is time for chelation as a “treatment” for autism to end. It is time for those who promoted the “autism is mercury poisoning” theory to step forward and admit their mistakes.

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