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]

Americans: make yourself heard

3 Nov

If the constant news barrage hasn’t driven it home to everyone yet, tomorrow is Election Day in the United States.

We’ve discussed the upcoming elections recently on this blog, especially since Senator McCain brought up autism in the final debate. This has been called historic. It likely is historic that disability issues have been so prominent in the debate and the discussion. I would venture to guess that Senator Obama’s policies on autism and disabilities in general are more thorough than has been seen before by a major candidate.

So, yes, get out and vote. That’s the obvious next step.

Then, take the less obvious step: email both candidates. Let them know what you like and don’t like about their platforms. Remind the winner of his team’s promises. But remember, there are three senators running. At least one will still be a Senator next year. Remind him/them of promises made. (should you be from Alaska and should Governor Palin remain Governor, let her know your thoughts as well.)

IDEA needs to be fully funded. That can’t be tied to earmarks, that can’t be tied to spending freezes. It is the right thing for the U.S. to do, regardless of circumstances. We as a country made a commitment, and we’ve never fulfilled it. Now is the time to change that.

Beyond IDEA, we have a commitment to all people with disabilities, of all ages. People have a right to a life with dignity.

Again, go out and vote. But, consider sending an extra message. Yes, it will be buried in the vast number of messages the winner (and his opponent) will get on election day.

The campaign websites have information on how to contact McCain/Palin and Obama/Biden. If can always reach Obama, McCain and Biden at their Senate offices as well.

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

David Kirby clarifies?

31 Oct

David is obviously a reader of this blog or Autism Vox or Respectful Insolence as these are (so far as I know) the three blogs that commented on his claim that thimerosal was no longer the ‘smoking gun’ for autism causation. Here’s the quote from the New Jersey Star Ledger:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

Now that’s a pretty unequivocal statement. Even so, David felt the need to clarify on Age of Autism yesterday:

The term “smoking gun” comes from Sherlock Holmes…..[]….To this writer’s mind…….the term means the “one and only cause,”.

I do not believe that thimerosal is the one and only cause of autism.

Now I’m confused. In the quote from the New Jersey Star Ledger David says thimerosal is no longer the cause of autism. In his own quote on AoA he says it is. Here is the quote that uses the words ‘smoking gun’:

The triggers, as I mentioned, might include, unfortunately, everything, and when I wrote my book I was hopeful that maybe thimerosal was the smoking gun. And if we just got mercury out of vaccines, autism would rapidly reduce. And we haven’t seen that happen yet. But I did say if that does not happen then that’s bad news; now we’re back to square one. It would have been so much nicer, and easier, and cleaner to say, gosh, it was the mercury in the vaccines and now we can take it out and the case is closed. That didn’t happen, and we need to look at everything. And as I said, not only the individual vaccine ingredients, but also the cumulative effects of so many vaccines at once.

So, this then as people said to me, is not David saying ‘its not thiomersal’, its David saying its not just thimerosal.

I’m kind of saddened by this. As David himself says:

There has been so much debate over ‘What is THE cause?’ And for a long time in this country, we were fixated on thimerosal, the vaccine preservative, and I share some of the blame for that because my book focused mostly on thimerosal.

Fixated is the right word. Some of us over and over and over were constantly telling people it couldn’t possibly – based on the available data – be thimerosal. And yet this stopped no-one from saying it was. More importantly it stopped no one from chelating autistic kids needlessly for ‘mercury poisoning’ that didn’t actually exist.

David now officially joins with Jenny McCarthy and the new side of autism/vaccines. Its everything. Individual vaccines ingredients and the cumulative effects of so many vaccines at once. My question is why? What we have here is an instance where a hypotheses was tested and failed to be accurate. It took 10 years for people who believe David to get that message. Many still haven’t.

David also claims that his infamous claim about CDDS data in 2005 (that if the thiomersal hypothesis was correct CDDS rates would fall – they didn’t) failed to take into account key confounders –

1) Falling age of diagnosis
2) Thiomersal in the flu shot
3) Immigration
4) Rising levels of background mercury

With all due respect to David these are pretty shoddy. David asks if the caseload could’ve increased between 1995-96 due to recent falling age of diagnosis and aggressive early intervention. I’m not sure that 95-96 could really be considered recent.

As discussed by Do’C on Autism Street, the whole ‘mercury in flu shots’ thing is rather misleading:

…better than 90% of the 5 year olds in the relevant data set were not even vaccinated. Does the increase in flu shot uptake in this age group that occurred after 2003 even matter with respect to the California data? It doesn’t seem likely given that about 80% of kids in the relevant age group are not even vaccinated during the next couple of years. But aside from that, the ones who were vaccinated were decreasingly likely to receive a thimerosal containing flu shot at all.

I’m not sure what to make of the Immigration thing. It makes me feel a bit uncomfortable – its easy to blame ‘the outsiders’ but without any actual science (and I’m not of the opinion that running CDDS data through Excel is science, sorry) to back those beliefs up, it feels like an easy ‘out’.

This rising levels of background mercury thing puzzles me. It may well be happening. David didn’t source the three studies (I imagine one is the Palmer thing) but I don’t see what background mercury has to do with thiomersal? Maybe I’m missing the obvious here.

David went on to describe what mercury can do:

constriction of visual fields, impaired hearing, emotional disturbances, spastic movements, incontinence, groaning, shouting, dizziness, nausea, vomiting, diarrhea and constipation,” (HERE) (otherwise known as every afternoon at the Redwood house, circa 1998 in my book)

That may well be ‘every afternoon in the Redwood house’ but its never been any time of the day in my house. None, I repeat, none of the symptoms David lists form part of the DSM (IV). Whatever it was causing those symptoms every afternoon in the Redwood household, it had nothing to do with autism.

David closes by referring to a study published early this year. He says:

So, despite all the cries of innocence among mercury supporters, the California study authors insist that this trend has not been confirmed.

Not quite. Here’s the quote from the Medical News Today article:

They also cautioned that the evaluation of the trends needs to continue in order to confirm their findings for the children born more recently.

What they’re saying is that their conclusion for the data they’ve looked at is:

The DDS data do not show any recent decrease in autism in California despite the exclusion of more than trace levels of thimerosal from nearly all childhood vaccines. The DDS data do not support the hypothesis that exposure to thimerosal during childhood is a primary cause of autism.

but – quite reasonably – for children they haven’t looked at, they can’t speak for.

More presidential autism politics II

30 Oct

I’ve been watching (happily) the recent emergence of autism as a topic of the U.S. presidential race. Actually, it is the emergence of autism as a topic for the republicans, as Senator Obama has had a clear policy statement on autism and on disabilities in general.

Recently, I noted that the McCain/Palin ticket’s statements were not strong commitments, but more general statements of support. Since that time, Governor Palin has come out with some stronger statements so it is worth revisiting the subject.

The Pittsburgh Tribune Review notes that in a recent speech:

Palin proposed “fully funding” the Individuals with Disabilities Education Act, which the campaign later said would cost $45 billion over the next five years. Palin proposed gradually increasing the $11 billion spent annually on such programs to $26 billion — the amount experts say the programs actually cost.

(as an aside $26B is only the 40% share the Federal government is supposed to be paying.)

But, back to the main theme–this is really good to hear. Whatever happens next Tuesday, Sara Palin, John McCain, Barack Obama and Joe Biden will be people of importance. The more of them that make commitments to support people with disabilities the better.

So, for that I thank Ms. Palin. I am pleased to see commitments firming up–they were very soft in the beginning.

I’d still like to see more. First, I’d like to see Mr. McCain pick up this theme. Yes, I know that they are trying to use this to help define Gov. Palin, but I’d like to hear Senator McCain commit to fully funding IDEA (as a part of a bigger disability platform). I’d love to hear him say that even if he remains a senator in a week, he’ll support fully funding IDEA.

But, let’s look again at the speech: here’s a paragraph from the Washington Post on this same speech:

In her speech, Palin said the federal government could finance the new investment by taking some of $18 billion it spends each year on earmarks, specific projects that are designated by members of Congress.

Let’s take a look at what the above means:

The President and the Vice President don’t have the power to pull earmarks out of bills. If fully funding IDEA is tied to reducing earmarks, it isn’t a commitment that she or Mr. McCain would have the power to enforce.

I don’t want to hear in a couple of years, “Well, we’d fund IDEA if congress would stop putting earmarks into bills.” I want to hear, “We increased the level of funding for IDEA in the budget we sent to congress. Further, we are going to fight them if they cut it.”

As election day nears, the pressure on the candidates gets greater. The McCain-Palin ticket has already responded by making their statements more firm. But, this isn’t the time to accept a weak commitment–we need to push them to do more.

Let Governor Palin and Senator McCain know: thank you very much. Sincerely, we thank you. But, please, take the time in this last week to make a firm commitment to funding IDEA. Also, IDEA is a great first step but, please, expand your disabilities policy to include more (like supports for adults, or whatever issues are big for you).

The McCain-Palin ticket has a contact form right on their website. So does Obama-Biden.

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

Jenny McCarthy: a tale of two tales

28 Oct

I love public libraries. Always have. Sometimes I go a long time without stepping in one, but once I do, I love them all over. I love leaving with a huge stack of children’s books and reading them over and over (and over and over) to my kids.

I went to the library last nigh. Dropped off some overdue books and picked up “Mother Warriors”, Jenny McCarthy’s latest.

No, I didn’t read it all in one sitting. But, I did read some sections that have interested me. If you recall, I blogged recently about Jenny McCarthy’s interview where she talked about her interactions with Barbara Walters on “The View”.

At the time, my focus was on the fact that Jenny McCarthy waited over a year to talk about her story of the behind-the-scenes events of her interactions with Ms. Walters. Silly me, I didn’t realize that not only was she saving that story to create buzz for her book, but that the story was a part of the book. But, let’s see what I wrote then:

Story line two: Let’s go all the way back to September, 2007. Jenny McCarthy is on “The View” for her first autism-book tour. Barbara Walters committed a terrible “sin”: she actually treated it like an interview and questioned Jenny McCarthy. I’d like to show you the video, but the video is now pulled from YouTube and the link to the video from the more recent story (which included the bit from “The View” also doesn’t seem to work anymore.)

Some short time after taping “The View” Ms. McCarthy was at a TACA picnic where she is said to have made some rather rude suggestions towards Ms. Walters.

Fast-forward to the present. On September 29th, Ms. McCarthy “forgave” Barbara Walters.

No, really. After Ms. McCarthy got a bit cross on the show and then took it out on Barbara Walters at the TACA picnic, she “forgives” Barbara Walters.

Boggles the mind, doesn’t it?

In that same interview, according to Ms. McCarthy (and only according to her, since Ms. Walters seems above responding to this), there was a bit of a heated exchange backstage with Ms. Walters after taping “The View”. Ms. McCarthy gives no indication of whether she (Ms. McCarthy) lost her cool at all.

You can imagine that when I saw chapters on Barbara Walters in the new book, I had to read them.

In “Mother Warriors”, Jenny McCarthy tells about how before she went on the The View, “a girl” who worked for the show came to Jenny’s dressing room and told her that Barbara Walters got a call from someone at ABC who said that the treatment that Ms. McCarthy was talking about was B.S.. Jenny got called in to talk to Ms. Walters before the show, and, according to Ms. McCarthy, the exchange was somewhat heated and Ms. Walters told Jenny how to answer a question that would come up in the interview. (“The answer is YES, most doctors do not agree with anything you are saying”).

So, Jenny McCarthy went on anyway and, as the title of the book says, “Against All Odds”, told her story and stood her ground.

The chapter finishes with:

Barbara tried her best to ruffle my feathers during the rest of the interview but I stayed focused, stayed within my heart chakra, and just stuck to my story.

The show was over and as I left The View that morning, all I could think was, “I could really use a big hug from Oprah right now.”

Damned good drama.

Anyone else remember “Two Minute Mysteries”? I loved those books as a kid. Every story was told with one little detail that allowed the inspector to see that someone wasn’t telling a consistent story. Did you catch this one? Take a look at what I wrote in my previous blog…this time with some emphasis:

In that same interview, according to Ms. McCarthy (and only according to her, since Ms. Walters seems above responding to this), there was a bit of a heated exchange backstage with Ms. Walters after taping “The View”. Ms. McCarthy gives no indication of whether she (Ms. McCarthy) lost her cool at all.

Yep, in the interview Ms. McCarthy recently gave, the heated exchange came after the interview on The View, but in the book, it came before the interview.

I’d love to show that video—but as noted, it was pulled.

So, it’s Sullivan’s word alone. My “anecdote”. Or, is it?

When the video came out, Jenny McCarthy’s organization plugged it on their blog, the Age of Autism. Let’s take a look at what they had to say, with a little emphasis added by me:

Jenny McCarthy on Access Hollywood

Access Hollywood talks to Jenny McCarthy about her heated dressing down by Barbara Walters after she was on The View during her promotion for Louder Than Words. Jenny explains that she didn’t understand where Barbara’s anger and refusal to believe Evan was in recovery, was coming from, until she learned that Ms. Walters had a sister with special needs.

…

There’s no embed code, but you can click to the Access Hollywood on the OMG! site HERE.
http://omg.yahoo.com/videos/barbara-walters-jenny-mccarthy-feud-resolved/5446

Anyone want to venture a guess as to why the video interview in that last link was pulled from the OMG site?

This is not a minor, “look, there’s a mistake in Jenny’s book” issue. At least one of Jenny McCarthy’s stories about the events of that day are wrong. And, in the end, I think I need Barbara Walters and people like her. What I don’t need are autism “advocates” who tell inconsistent stories that could serve to alienate the press from the “autism community”.

But, this also serves as an example of anecdotes and memory. The events on The View were, by Jenny McCarthy’s account, rather traumatic. She tells in her story about how her mother always wanted Jenny to someday be on one of Barbara Walter’s specials, and how that dream was shattered. Jenny McCarthy wrote about her side of the events in her book. And, yet, when she was interviewed, she told a different story.

Why do I think this is important? Take a look at another quote from the book. This is what Ms. McCarthy relates as her thoughts after Oprah Winfrey read the statement from the CDC (that there is no science to support the connection between vaccines and autism) during the “Louder than Words” book tour:

“Who needs science when I’m witnessing it every day in my own home? I watched it happen.”

There is an excellent discussion going on at AutismStreet about anecdotal evidence. Prometheus made some good comments, one of which I quote here:

In science, anecdotes are a form of data, albeit of the lowest quality. A series of consistent anecdotes can be used to construct a hypothesis, which can then be tested by experimental means.

The anecdotes from Ms. McCarthy give a good example of why anecdotes are the “lowest quality” form of data. Her stories just do not jive.

Rethinking Expertise II

25 Oct

Recenty, I discussed a new book, Rethinking Expertise. The author took the position that there is a danger in the idea that everyone can be an expert on anything–all that is needed is an internet connection.

What I found most troublesome was the idea that “vaccine scares” were used as a prime example of this false expertise. At the time, I assumed that the author likely meant the autism/vaccine link.

The author, Harry Collins of Cardiff University, was recently interviewed by Ira Flatow of Science Friday. You an listen to the interview on the Science Friday website (or download from there).

In the interview, he specifically mentions the Wakefield/MMR scare.

The autism community is being used as a big example of the dangers of false-expertise. Not a good sign.

Sometimes the HuffPo gets it almost right

25 Oct

Regular readers will know of my concern regarding the HuffingtonPost and its clear antivax agenda. Kim Stagliano, David Kirby and (I think) Barbara Loe Fischer post there and whilst I don’t believe David has an antivax belief, I do think he is unfortunately promoting unfounded statements that feed antivax talking points (eg the claim HHS conceded vaccines caused Hannah Polings autism).

However, I was really pleased to see a post today in my Google Alerts from HuffPo that got it 95% right. Before I say why I have to clarify once again my position as a UK citizen and therefore my belief that I really shouldn’t take a position on the upcoming US elections. However, thats becoming increasingly difficult to do as I read such monumentally stupid things from McCain as:

[Sarah Palin knows]…more about autism then anyone I know…

Which I take to mean that the only person he knows with a connection to autism is Sarah Palin. Also his confused and pretty desperate looking pandering to the antivax crowd is downright annoying. But anyway.

The HuffPo post I’m referring to is Obama and autism by Elaine Hall. She describes:

Neal is my resident expert on autism. Now 14 years old, Neal was adopted from a Russian Orphanage at 23 months, and diagnosed with severe autism at age 3 . Neal is non verbal (or as we prefer to refer to him “a man of few words”) so when he speaks his truth through typing – WE LISTEN.

Me like.

Last January at one of his sessions with Darlene she asked, “”So, Neal, what have you been thinking about lately?”

“The Elections,” he typed on his Alpha Smart keyboard.

“What about the elections?” asked Darlene.

“I’m for Obama, he typed.”

“Obama? Why?”

“Obama is for Autism, ” he finished.

That evening my husband and I Googled Obama and Autism. And there it was, pages and pages from people with autism. Supporting Obama.

Me like even more.

This tells me a number of things. First it tells me that Elaine Hall and her partner are smart enough to see their autistic son as the resident autism expert. What a refreshing attitude. Second it tells me that when their expert speaks – THEY LISTEN. Also a refreshing attitude. Thirdly it tells me that someone being non-verbal does not mean they cannot communicate. I can think of more than a few people who read this blog who need that lesson drummed into their heads. Fourthly, it tells me that autistic people by and large support Obama. This means (for whatever the opinion of a non-voting Brit is worth) that I’m for Obama too.

Now, I said at the start of this piece that HuffPo only got it 95% right. They would’ve got it 100% right if they’d let Neal do the typing. However, he is only 14 and maybe thats why he’s not contributing publicly just yet. For now, I’m more than happy to read Elaine Hall’s words. This is from the front page of her website The Miracle Project:

The Miracle Project is a theatre and film arts program for children with special needs and their typically developing siblings and peers. Our mission is to provide a loving, accepting nurturing environment which celebrates and honors the unique and often unrecognized talents of these young people by guiding them through creative workshops and artistic programs.

Thank you Elaine Hall and thank you Neal. I’ll be looking out for more from both of you.

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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.

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