Tag Archives: Autism

‘Miracle autism cure’ seller exposed by BBC investigation

12 Jun

The BBC have a new story taking on the so-called “Miracle Mineral Supplement” in ‘Miracle autism cure’ seller exposed by BBC investigation.

MMS (AKA chlorine dioxide, CD, or part of a so-called “parasite protocol”) is a bleach solution produced by mixing two chemicals which are sold separately and manufactured often in rather dubious factories. Case in point, the BBC tested the chemicals they were given and found they were much stronger than labeled.

Through his website, Mr Edwards, who says he is not attending the conference, sold the researcher the one bottle of liquid labelled as 22.4% sodium chlorite and a second labelled as 4% hydrochloric acid.

When the BBC sent the chemicals to Kent Scientific Services, an independent laboratory, they were found to be 57% and 45% stronger than the advertised concentration respectively.

The BBC approached a seller of MMS and purchased the chemicals. The person selling MMS, one Leon Edwards, made the usual huge claims: it cures malaria, HIV, cancer and, of course, autism. Of course they don’t say “cure”, they say in this case “purge”.

MMS is a scam, plain and simple. It is sold as a cure to autism parents for use on their disabled children. The sales pitches present it with the usual approach: claims of children “recovered” together with some scienc-y sounding discussion to make it seem legitimate. And, of course, if you blame vaccines for autism and claim your product somehow heals vaccine injury, you will get nothing but support from a vocal group of autism parents.

Fiona O’Leary–an autism parent–is quoted in the story. She’s been a major advocate for autistic kids through her efforts to expose MMS.

Fiona O’Leary, a mother of two autistic children, is a leading campaigner against MMS. She warned: “This has been offered as a cure for autism in 60 countries.

“What worries me is people normalising this treatment – it does not even warrant the word treatment, autism is not a ‘disease’ that you can ‘cure’ with bleach.

“We need legislation so that people offering it are always prosecuted, but we don’t see the authorities addressing this issue.”

She added: “The suffering children are going through is shocking – it’s child abuse.”


By Matt Carey

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You know, “Dr. Bob”, minority health disparities are HUGE in the autism community.

1 May

Robert “Dr. Bob” Sears is advertising himself again on the TacaNow blog. He’s telling us all about how he was an early adopter on biomed approaches to autism and how it’s all about listening to the parents. He tells us about how it all started with a parent asking for a prescription for an antifungal. No discussion of actually testing the kid for a fungal infection, just the standard story: parent asks, DAN doctor writes prescription story, DAN doctor takes credit for any gains, and no mention ever of any adverse reactions.

So, clearly, a case of same old/same old. So why write about it here? Because once again “Dr. Bob” shows how out of touch he is with the needs of the autism community. Oh, sure, he knows what parents at conventions like AutismOne want to hear (snarky remarks about vaccines and, you, the parents are always right). But what is one of the biggest problems in the autism communities right now? And has been for, well, ever? Disparities in diagnosis and access to treatment.

Here’s an example: racial and ethinic minorities are vastly under diagnosed and under served. In my state (same as “Dr. Bob’s”) if you are Hispanic, you are about 70% less likely to get special education services under the autism label as if you are white. I’ve plotted it out for my district that that ratio has remained basically constant for the past 14 years (as far back as the data are available).

I’m sure “Dr. Bob” can rattle off the latest CDC autism prevalence figures, or at least some of them. But if one actually reads the report, what does one find?

Non-Hispanic white children were approximately 30% more likely to be identified
with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.

Given that, take a look at what Dr. Bob wrote on the TacaNow blog:

Yet, there is a shadow over all this success: April was supposed to be Autism Awareness Month. Did anyone even know? I checked the CDC website, and they proclaim April to be National Minority Health Month, with the catch phrase “Learn about CDC and HHS efforts towards eliminating health disparities,” as if THAT is the most important health crisis facing America today.

If “Dr. Bob” really believes that biomedical approaches are so helpful, why discount the need for outreach to minorities? Really, we have a HUGE problem with under diagnosis of autism in California among minorities. But you seem unaware of this.

One does wonder how many minorities, especially those with low incomes are served by the Sears clinic. I grew up in “Dr. Bob’s” home, Orange County, going to school along side farmworker kids. There’s a huge population of underserved minority kids there.

As an aside, here’s how one does an internet search, “Dr. Bob”. Top hit is Announcement: Autism Awareness Month and World Autism Day — April 2015. But that’s an MMWR (Morbidity and Mortality Weekly Report) from the CDC, and as a doctor you must follow those, right? Especially since the MMWR’s include, say, information about the recent California measles outbreak which you downplayed.

Here, while we are at it, let’s do another google search. The word “minority” on the “Dr. Bob’s” family website (askdrsears.com).

Gee, 5 hits. One on how only a minority of families skip the MMR vaccine. Only one on racial/ethinic minorities, an article on lice.

No hits for “Hispanic” on the Sears family website.

“Dr. Bob”, if you want to pretend to speak for the autism communities (you don’t), at least show us the respect of acknowledging one of the big issues in our community: under served and under diagnosed populations.

Of course, to acknowledge these points you have to also acknowledge that autism isn’t always diagnosed, and that we need awareness to get diagnoses and services to these communities.

Which is to say, you have acknowledge that autism “rates” are under counts. And that doesn’t fit with your ideas on vaccines causing autism, does it? Or did I misread you when you wrote that you were waiting to “proclaim from the rooftops” that the MMR causes autism? (odd how you edited the original version of that article to remove that comment, isn’t it.)

Seriously, “Dr. Bob”. Get out of the corner of the autism community you profit from and take a hard look at what we really need.


By Matt Carey

comment on: When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

1 May

Having just discussed a study on what happens after autism “recovery” it may be worth taking a look at another study that just came out this week. This study isn’t yet published but was presented at a conference:

When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

The abstract is below, but in this study group there were significant gains in a subgroup and a loss of ASD diagnosis. The subgroup had much less intellectual disability on follow up.

And they also had a number of other disabilities and support needs. Most still had some diagnosis, if not ASD. Most were still getting some level of extra support in school.

BACKGROUND: It has been documented that some children with early diagnosis of Autism Spectrum Disorder (ASD) do not meet criteria for the diagnosis at a later age. It is unclear, however, if deficits remain after ASD symptomatology resolves.
OBJECTIVE: To characterize residual learning, cognitive, emotional/behavioral diagnoses and educational needs of a group of children with early ASD diagnosis that resolved.
DESIGN/METHODS: Review of 38 children diagnosed with ASD at a University-affiliated inner-city early intervention program 2003-2013 who had follow up evaluation indicating resolution of the original ASD diagnosis. The group represents 7% of the 569 children diagnosed with ASD by the program during this period. Original and follow up diagnoses were made by an experienced multidisciplinary team based on DSM-IV criteria, Childhood Autism Rating Scale(CARS) and/or the Autism Diagnostic Observation Schedule(ADOS). All children had re-evaluation an average of 4 years later. Initial cognitive level was based on the Bayley, and follow up on WPPSI, WISC, or Stanford Binet. Data collected included: demographics, cognitive level, CARS, diagnoses and services originally and at follow up.
RESULTS: Mean age at initial diagnosis 2.6±0.9y and at follow up 6.4±2.8y. 80% male; 44% Hispanic, 36% Caucasian, 10% African American; 46% had Medicaid. Mean initial CARS 32±3 and at follow up 25±4. The initial ADOS (21/38) categorized 29% as autism and 67% ASD and was negative at follow up when available (23/38). On initial cognitive testing (29/38): 33% with intellectual disability, 23% borderline, 44% average. At follow up (33/38): 6% borderline, the rest average. At follow up, 68% had language/learning disability, 49% externalizing problems (Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Disruptive Behavior Disorder), 24% internalizing problems (mood, anxiety, OCD, selective mutism), 5% significant mental health diagnosis (psychosis.nos), and 8% warranted no diagnoses. 26% were in mainstream academic settings without support and 13% with support, 29% in integrated settings, and 21% in self-contained classes.
CONCLUSIONS: When an early ASD diagnosis resolves, at least in the early years, there are often learning and emotional/behavioral diagnoses that remain. Understanding the full range of possible outcomes is important for parents, clinicians, and the educational system.


By Matt Carey

Autism Speaks:  The results of this research are clear: Vaccines do not cause autism…but doesn’t let that statement stand alone.

26 Mar

Autism Speaks has come out with some very strong statements about autism and vaccines.  And the back peddled. 

First, here is a statement by Robert Ring, Chief Science Officer:

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.

Rob Ring
Chief Science Officer, Autism Speaks

 
In the past Autism Speaks had been sympathetic towards the idea that vaccines cause autism.  More than sympathetic, some would say.  Such a clear statement as above would have been unthinkable from Autism Speaks only a few years ago.
I wish they had made these statements earlier, but I am glad they are making these statements now.  The vaccine hypothesis has been the most damaging idea in autism since the refrigerator mother theory.  With Autism Speaks position as a well known autism organization, perhaps even fewer families will get caught in the vaccines-cause-autism trap in the future.Here’s the way the Autism Speaks vaccines and autism page looked just last year.  It includes many problematic statements and concludes: “A list of publications that used VAERS information to study associations with autism can be found here“.  “Here” is a link to pubmed with the search terms “vaers” and “autism”.  No surprise, it’s a list that is padded out by works by Mark and David Geier.  The Geiers have been performing poor research for years and have been discussed here at Left Brain/Right Brain many times.


The above statement by Mr. Ring was picked up by the press in February as it was so clear.
Next, Bob Wright, co-founder of Autism Speaks:
 

Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.

Bob Wright
Co-founder, Autism Speaks

It’s a fairly stilted paragraph in my read.  It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring.  Scientific research has not directly connected autism to vaccines?

Even with that, I can’t imagine that admitting that vaccines are “important” will go over well in some circles.  Close circles.  Even “important” is to positive a word for some.  But, seriously, here we have an invention that has saved more lives that possibly any other in medical history and we get “important”?

Yes, Mr. Wright, efforts must be made to educate parents about vaccine safety.  That’s what your chief science officer did.  Sadly, you can’t let Autism Speaks be a science led organization.

By Matt Carey

Note: I accidentally published an early draft of this article yesterday.

Is Andrew Wakefield’s Strategic Autism Initiative failing?

3 Mar

When Andrew Wakefield left Thoughtful House he set up a charity, the Strategic Autism Initiative.  Interestingly even now, years after it was founded, it appears to have no website or Facebook page.  What it does have is tax forms because every charity must make those public.   Last year when I looked these tax forms, a few points became apparent.  Most of the money the SAI had taken in (58%) had gone to salaries, with the lion’s share of that going to Mr. Wakefield himself.  In 2012 more money was spent on salaries that was taken in.  SAI appears to have two employees, Andrew Wakefield and Terri Arranga.  Here are the contributions to the SAI, Mr. Wakefield’s salary and Ms. Arranga’s salary for the years 2010, 2011, 2012.

SAI contributions and salaries

And here are the tax forms:

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

It is worth noting that the SAI was formed towards the end of 2010, hence the low salaries for that year.

Donations were down dramatically from 2011 to 2012 leaving one to wonder: what would 2013 bring?  Did the downward trend continue? Well, here’s the 2013 tax form:

Strategic Autism Initiative 2013 tax form.

Gross receipts: $50,498, down from $113,501 for tax year 2012.  A drop of over 50%.  The SAI ran a deficit of $97,514, nearly twice what they took in.  Mr. Wakefield took no salary, Teri Arranga only $5,000.  The SAI only had $21,396 in assets at the end of the year.

In short: the SAI appears to be failing. OK, in terms of benefit to the autism communities, the SAI has continually failed.

SAI 2013 form 990

Below are the “program service accomplishments” for the SAI in 2012 and 2013.  Program services are the heart of what a charity is doing.  Well, a standard charity.  That said, ignore the money amounts listed and tell me if you can see any difference in the text.  It looks to me like they copy and pasted the accomplishments from 2012 into 2013.  If I wrote the same accomplishments one year to the next, my management would likely let me go for accomplishing nothing in a year.

SAI 2012 program services SAI 2013 program services

This tax form–the most recent one available–is from 2013.  We will have to wait for the 2014 form but if this trend continued, the SAI is either failing or has failed as an organization.

By Matt Carey

National Geographic, “The War on Science”, includes discussion of vaccines and autism

19 Feb

I just got my copy of the March 2015 issue of National Geographic a couple of days ago. Imagine my reaction when I saw this cover (click to enlarge):

natgeo

In case you are having trouble imagining my reaction–it includes a big THANK YOU to National Geographic.

Yes, they put “vaccinations can lead to autism” up there with “evolution never happened” and “the moon landing was fake”.

This paragraph includes references to Jenny McCarthy (anti-vaccine activist and actress Jenny McCarthy) and Andrew Wakefield’s Lancet article.

Doubting science also has consequences. The people who believe vaccines cause autism—often well educated and affluent, by the way—are undermining “herd immunity” to such diseases as whooping cough and measles. The anti-vaccine movement has been going strong since the prestigious British medical journal the Lancet published a study in 1998 linking a common vaccine to autism. The journal later retracted the study, which was thoroughly discredited. But the notion of a vaccine-autism connection has been endorsed by celebrities and reinforced through the usual Internet filters. (Anti-vaccine activist and actress Jenny McCarthy famously said on the Oprah Winfrey Show, “The University of Google is where I got my degree from.”)


By Matt Carey

Dan Aykroyd, still autistic after all these years

5 Dec

With all the recent hullabaloo about how celebrities being autistic somehow harms the autism community (if you don’t know what I’m talking about, check news sources for Jerry Seinfeld and autism), one counter example seems to be ignored: Dan Aykroyd.  Mr. Aykroyd is perhaps most famous for his movie Ghost Busters, but his credits are many (including my favorite, Elwood Blues of the Blues Brothers).  He’s a successful entertainer, and a diagnosed autistic.

Begs the question, why no backlash against him?

One can only speculate, so speculate I will.  First, Mr. Aykroyd’s “coming out” didn’t make such a public splash.  In my mind, that’s the most likely explanation for a lack of backlash.  People could see his statement as more of a threat.  Also, with more publicity, people know that their responses will be more widely read.  A second reason for the difference in response is that Mr. Aykroyd handled the topic much better than did Mr. Seinfeld.   Consider these two news stories:

In 2013 he was interviewed by the Daily Mail.  In ‘I have Asperger’s – one of my symptoms included being obsessed with ghosts’, Mr. Aykroyd responded to the question of what is his “worst illness” thus:

I was diagnosed with Tourette’s at 12. I had physical tics, nervousness and made grunting noises and it affected how outgoing I was. I had therapy which really worked and by 14 my symptoms eased. I also have Asperger’s but I can manage it. It wasn’t diagnosed until the early Eighties when my wife persuaded me to see a doctor. One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film Ghostbusters was born.

Dan Aykroyd: ‘My Harley-Davidson is a form of psychiatric therapy. You get on that and you don’t need a shrink’

My very mild Asperger’s has helped me creatively. I sometimes hear a voice and think: “That could be a character I could do.” Of course there are many different grades, right up to the autism spectrum, and I am nowhere near that. But I sympathise with children who have it.

Let’s do the compare and contrast with Mr. Aykroyd and Mr. Seinfeld.

1) Mr. Aykroyd has a diagnosis.  About 3 decades ago he was diagnosed.  Of course, back then Asperger syndrome wasn’t an “official diagnosis”.  But, of course Asperger’s work on autism goes back as far as Hans Kanner’s work.  Mr. Seinfeld doesn’t have (nor did he claim to have) a diagnosis.

2) Mr. Aykroyd was also diagnosed with Tourette syndrome.  At age 12.  So, having a neurlogical diagnosis early on gives more credence to his later-in-life autism (Asperger) diagnosis.

3) Mr. Aykroyd has acknowledged that his challenges are much less than most autistics. This is a big point.  Temple Grandin does the same thing, by the way.  As do pretty much every self-advocate I’ve ever encountered in real life or online.

So, yeah, Mr. Aykroyd and Mr. Seinfeld approached their public discussions of autism very differently.  And, as a result have received very different responses.

Leaving aside the lack of any “rage spirals” involved in Mr. Aykroyd’s revelation, what about the basic fact that he’s been essentially ignored?  Here we have an autistic, with comorbid Tourette syndrome, who is successful.  Who credits his autism as contributing to his success.

Why is he ignored?  Perhaps that question is asked and answered.  He’s successful and he credits his autism with contributing to his success.  That doesn’t fit into the narrative.  While Mr. Aykroyd is NLMK (not like my kid), he could be a hero for some in the autism community.  Why can’t we have autistic heroes?  Autistic people whom autistics and non-autistics can look up to and say, “Dang, s/he did well”?

The answer is we can have autistic heroes.  We can acknowledge successful autistics.   Because there is no one face of autism.  Autism can be Dan Aykroyd and be people who need extraordinary support so they don’t end up sedated or restrained in an emergency room.  Sometimes we talk about those who meet a more standard definition of successful. Sometime we talk about those with more extraordinary challenges.  And sometimes we talk about the entire spectrum in a single conversation.  That’s what it means to be part of such a varied community.

By Matt Carey