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Lilady: goodbye, old friend.

26 May

As some of you may know from other writers online, lilady, frequent commenter here at Left Brain/Right Brain, has passed away. She’s known online now largely for her efforts combating misinformation about disability and also vaccines. But her best work was in advocating for her son, who had very significant disability. From her last comment here:

My son was born with a rare genetic disorder which caused multiple and profound physical, intellectual and medical impairment (pancytopenia, including leukopenia http://www.md-health.com/Leukopenia.html We depended on herd immunity to protect him…and parents who did not opt out of vaccines for their children

Lilady fought hard for appropriate placement for her son and her “other son”, back in the day when it was even harder than it is now to accomplish this.

I knew her through emails as well as comments and sincerely regret not meeting her in person when I had the chance. I thought I would have the chance again but it didn’t come to pass.

I will miss her greatly. She was more than an online and offline advocate. She was a friend. I wish her family well and thank them for loaning her to us.

Other tributes to lilady:

Todd W at Harpocrates Speaks:
In Memoriam: Lilady

Orac at Respectful Insolence:
In memoriam: lilady

Skeptical Raptor:
LILADY RN – A MEMORY OF A PASSIONATE VACCINE SUPPORTER

edit to add: more tributes
Rene F. Najera:
The people you thought were immortal

Just the Vax
In Remembrance of Lilady

Autism Mum:
Goodbye, Lilady RN
—

by Matt Carey

I like living in a free country

25 May

In the world of vaccine antagonistic groups and the fake-medical approach to “treating” autism (how can you “treat” anything with fake medicine like MMS?) we hear a lot about the lack of freedom and how we are in some sort of a police state. Anyone who openly counters the misinformation is likely to be branded a “Nazi” or similar epithet (remember Andrew Wakefield’s video where he claimed the CDC were running a new Tuskegee experiment with vaccines, and that the CDC were worse that Hitler, Pol Pot and Stalin? And remember how many groups and blogs actually promoted this embarrassment?)

Much as it is aggravating to watch my own community (autism parents) spread misinformation and work against public health (remember J.B. Handley bragging that his team are “… in the early to middle stages of bringing the U.S. vaccine program to its knees”?). Much more, it’s very, very painful to watch groups like AutismOne promote fake medicine (for example chelation, chemical castration, bleach enemas) for use in disabled childen.

I’d be very happy if these practices ended. But I do not, have not and will not advocate that these groups be “silenced”. I and others counter the misinformation. And that’s the way of a free society.

I was reminded of this in a recent business trip. To Beijing, China. I did not blog during that time and not just because I was very busy. WordPress (the platform on which LeftBrainRightBrain.co.uk is hosted) is blocked in China. As are Twitter, Facebook, Yahoo, Gmail, Google and many other sites.

Groups with misinformation complain that they aren’t given “balance” in the press in the U.S.. They complain over and over (and over) again in ways which are just not available in a non free society.

I was attending a science/engineering conference. Conferences are very different from parent conventions like AutismOne and the newer Generation Rescue meetings. While they bill themselves as conferences and they have “scientific” talks, they lack one very important thing: criticism. No one stands up and speaks out against clearly wrong ideas. Mark Geier, for example, can stand up and give a ridiculous talk about mercury and testosterone (which is in reality just an advertisement for his “Lupron Protocol”) and no one will stand up and say, “Mark, could you explain how your logic, in which you discuss mercury/testosterone complexes produced in beakers of hot benzine, has anything to do with the brains of autistic children?” (which is how scientists say, “your talk was a bunch of hokum”).

No. No one speaks out. Not any of the self-proclaimed leaders of this movement. Not Andrew Wakefield. Not Mark Blaxill. Not Brian Hooker. Not anyone at the Age of Autism Blog, the so called “thinking mom’s revolution”, AtuismOne. The list goes on and on of the fake leaders. They lack courage. Plain and simple. They will never stand up to people who claim that vaccines cause autism, no matter how wrong or harmful their proposed “therapies” are. They will circle the wagons and accuse their critics of being against treating autistics.

You want to talk courage? Of all the sites in Beijing that people wanted to see, Tiananmen Square was number one. And for only one reason: to stand where perhaps the bravest act I’ve ever seen happened. I’m speaking of the man who stopped a row of tanks in 1989.

Tienanmen Square is the fourth largest public square in the world. But public is an interesting word. The square is closed to the public from 10pm to 5am. And when it is open all entry points require a security check. And there are security cameras. Everywhere cameras. To get to the Palace (the Forbidden City) one must walk through a few large gates. No big deal there. But at the first gate, the one leaving the square (the one with the giant picture of Mao on it), I counted no fewer than 20 security people watching people walk through.

After you pass through the first two gates, at the entrance to the Forbidden City, just across from the Palace Museum ticket booths, there is a small garrison.

DSCN1852

Think that is a ceremonial guard? Well, if you come back later, the guys are training in camo gear. And how about the armored personnel carrier?

DSCN1900

Those who throw out terms like “police state”, “Nazi” and “censorship” belittle those who live under a very real, very strong, controlling government.

And don’t mistake the fact that my ability to write here is very dependent on living in a free society. As I noted above, WordPress is blocked in China. And I have little doubt that many of those who ask for “health freedom” would not support a free criticism of their actions were they in power.

Coincidentally, today is Memorial Day in the U.S.. A day when we remember and thank those who served and especially those who gave all in the protection of our freedom. I am more aware than ever of what they have given to me and my family. I don’t think that those with failed ideas about autism, vaccines and more who cry about a lack of “freedom” honor the people who fought for that very freedom.

There’s a reason why those ideas don’t gain traction. It’s not because they aren’t heard. They are heard. The ideas fail because they aren’t right.

—
By Matt Carey

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

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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

Tags: , , ,

comment on: “Recovery” from the diagnosis of autism – and then?

1 May

Before commenting on the paper, there are a few general comments on the idea of recovery that need to be addressed. The fact that some people are diagnosed as autistic and later are found not to be autistic is not a new idea. Here’s a study from 1975 where 75% (of an admittedly very specialized) subgroup were diagnosed as autistic and later found to have “…social responses appropriate to their level of function; those who did not generally were over 3 years of age at the time of their first examination or had initial DQs of 35 or less”. I.e. they were no longer considered autistic. The idea that losing a diagnosis would be labelled “recovery” does seem to be a new idea. “Recovery” implies that one was originally not autistic, became autistic and was later “recovered” to the original state. Whatever one’s stance on whether that accurately describes autistic regression, it doesn’t describe at least most of autism.

Given this, I find the use of the term “recovery” by academics to be problematic at best. My personal feeling is that the authors of the study below shouldn’t have used the term. But it’s worth noting that this, like many topics in autism, is a minefield (no safe place to stand). When a team discussed kids as having an “optimal outcome” from autism, they too came under a great deal of criticism.

All this said, a new study came out discussing kids who were diagnosed as autistic (age 4 or younger) and two years later did not meet the criteria for a diagnosis. This group was followed up later (about age 10) and were found to have significant challenges. In fact, some had declined in Vineland test scores.

And, a “substantial minority” were once again autistic, according to the parents.

So, “recovery” may not be all that it’s cracked up to be. But is there more valuable lessons that we can learn from this? Well the researchers point out that these kids would have and still could benefit from significant support. Clearly, an autism diagnosis is the be-all and end-all of what should determine a child or adult’s need for support.

Here is the abstract:

Background: The aim of this study was to follow up the 17 children, from a total group of 208 children with autism spectrum disorder (ASD), who “recovered from autism”. They had been clinically diagnosed with ASD at or under the age of 4 years. For 2 years thereafter they received intervention based on applied behavior analysis. These 17 children were all of average or borderline intellectual functioning. On the 2-year follow-up assessment, they no longer met criteria for ASD.
Methods: At about 10 years of age they were targeted for a new follow-up. Parents were given a semistructured interview regarding the child’s daily functioning, school situation, and need of support, and were interviewed using the Vineland Adaptive Behavior Scales (VABS) and the Autism – Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview.

Results: The vast majority of the children had moderate-to-severe problems with attention/activity regulation, speech and language, behavior, and/or social interaction. A majority of the children had declined in their VABS scores. Most of the 14 children whose parents were A-TAC-interviewed had problems within many behavioral A-TAC domains, and four (29%) had symptom levels corresponding to a clinical diagnosis of ASD, AD/HD, or both. Another seven children (50%) had pronounced subthreshold indicators of ASD, AD/HD, or both.

Conclusion: Children diagnosed at 2–4 years of age as suffering from ASD and who, after appropriate intervention for 2 years, no longer met diagnostic criteria for the disorder, clearly needed to be followed up longer. About 3–4 years later, they still had major problems diagnosable under the umbrella term of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations). They continued to be in need of support, educationally, from a neurodevelopmental and a medical point of view. According to parent interview data, a substantial minority of these children again met diagnostic criteria for ASD.

Keywords: autism spectrum disorder, autistic traits, AD/HD, A-TAC, Vineland, cure

Here is a video presentation that was published along with the paper

—
By Matt Carey

Press Release: New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Neurodevelopment and Behavior in Infant Primates

26 Apr

Below is a press release from the Johnson Center (formerly Thoughtful House). It is about a recent follow-up study they performed (discussed here). I’ll give the press release below with no further comment except to highlight this statement by the lead researcher: “Despite these limitations, the data in this primate study overwhelmingly provides support for the safety of pediatric vaccines.”

New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Neurodevelopment and Behavior in Infant Primates

(Austin, Texas) – February 18, 2015 – A research study published today in Environmental Health Perspectivesreported that vaccination of infant macaques with thimerosal-containing vaccines did not negatively impact neurodevelopment, cognition, or behavior. In this study animals received several pediatric vaccines containing thimerosal (a mercury-based preservative) in a schedule similar to that given to infants in the 1990s. Other animals received just the measles-mumps-rubella (MMR) vaccine, which does not contain thimerosal, or an expanded vaccine schedule similar to that recommended for US infants today. Control animals received a saline injection. Regardless of vaccination status, all animals developed normally.

“This comprehensive study of infant primate development, including analyses of learning, cognition, and social development, indicated that vaccinated primates were not negatively affected by thimerosal or the MMR vaccine; the same was true for animals receiving an expanded vaccine schedule” explained Dr. Laura Hewitson of The Johnson Center for Child Health and Development, the principle investigator of the study.

Hewitson worked with a team of researchers at the Center on Human Development and Disability Infant Primate Research Laboratory and the Washington National Primate Research Center (WaNPRC) at the University of Washington, Seattle WA. According to Hewitson, the study was designed to compare the safety of different vaccination schedules, including the schedule from the 1990s, when thimerosal was still used as a preservative in multi-dose vaccine preparations. Although in 1999 the FDA and the American Academy of Pediatrics recommended that thimerosal be removed from vaccines in the US, it is still used as a preservative in multi-dose flu shots, which are recommended for pregnant women and children 6 months of age and older.

“This is the first time the safety of the entire pediatric vaccine schedule has been investigated in a relevant animal model,” said Dr. Judy Van de Water from the UC-Davis MIND Institute, who was not involved in this study.

Hewitson also noted, “As with any animal study, assessments were implemented under controlled laboratory conditions. We did not test all of the interacting variables that could contribute to an adverse outcome, such as birth weight, gestational age, genetic vulnerability, or in utero and post-natal chemical exposures. The interaction between multiple environmental exposures or genetic factors that may impact vaccine response, which is an important aspect of the vaccine debate, was not addressed in this study. Despite these limitations, the data in this primate study overwhelmingly provides support for the safety of pediatric vaccines.”

Citation

Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. Britni Curtis, Noelle Liberato, Megan Rulien, Kelly Morrisroe, Caroline Kenney, Vernon Yutuc, Clayton Ferrier, C. Nathan Marti, Dorothy Mandell, Thomas M. Burbacher, Gene P. Sackett and Laura Hewitson. Environmental Health Perspectives, Feb 18, 2015; doi:10.1289/ehp.1408257.
Once the embargo lifts, this article can be downloaded for free at http://ehp.niehs.nih.gov/1408257.

This study was supported by The Ted Lindsay Foundation, SafeMinds, National Autism Association, the Vernick family, and the Johnson family. This work was also supported by WaNPRC Core Grant RR00166 and CHDD Core Grant HD02274.

About The Johnson Center

The mission of The Johnson Center for Child Health and Development is to advance the understanding of childhood development through clinical care, research, and education.

—
By Matt Carey

Another large study shows no link between autism and the MMR vaccine (or, a comment on “Autism Occurrence by MMR Vaccine Status Among US Children With Older Siblings With and Without Autism”

22 Apr

Autism is not associated with the MMR vaccine. The MMR vaccine does not increase autism risk. To put it in plain language: the MMR vaccine does not cause autism.

Just in case the message gets lost in this discussion, I figured I’d put it plainly at the start.

A study out today compares autism rates and the use of the MMR vaccine. In specific, the researchers looked at children with an older sibling. In this way they could look at kids in a high risk group, those who had an older sibling who is autistic. The authors also looked at kids who had older siblings who are not autistic. In the end the authors found “receipt of the MMR vaccine was not associated with increased risk of ASD, regardless of whether older siblings had ASD”.

To put it simply, kids who got the MMR vaccine were not more likely to be autistic. It doesn’t matter if their older siblings were autistic or not. So, “high risk” or not, the MMR vaccine doesn’t increase autism risk.

Another way to say it, parents who skipped the MMR vaccine did nothing to prevent autism in their younger kids. Nothing. They did leave their younger kids vulnerable to measles infection.

Here’s the abstract.

Autism Occurrence by MMR Vaccine Status Among US Children With Older Siblings With and Without Autism.

IMPORTANCE:
Despite research showing no link between the measles-mumps-rubella (MMR) vaccine and autism spectrum disorders (ASD), beliefs that the vaccine causes autism persist, leading to lower vaccination levels. Parents who already have a child with ASD may be especially wary of vaccinations.

OBJECTIVE:
To report ASD occurrence by MMR vaccine status in a large sample of US children who have older siblings with and without ASD.

DESIGN, SETTING, AND PARTICIPANTS:
A retrospective cohort study using an administrative claims database associated with a large commercial health plan. Participants included children continuously enrolled in the health plan from birth to at least 5 years of age during 2001-2012 who also had an older sibling continuously enrolled for at least 6 months between 1997 and 2012.

EXPOSURES:
MMR vaccine receipt (0, 1, 2 doses) between birth and 5 years of age.

MAIN OUTCOMES AND MEASURES:
ASD status defined as 2 claims with a diagnosis code in any position for autistic disorder or other specified pervasive developmental disorder (PDD) including Asperger syndrome, or unspecified PDD (International Classification of Diseases, Ninth Revision, Clinical Modification 299.0x, 299.8x, 299.9x).

RESULTS:
Of 95 727 children with older siblings, 994 (1.04%) were diagnosed with ASD and 1929 (2.01%) had an older sibling with ASD. Of those with older siblings with ASD, 134 (6.9%) had ASD, vs 860 (0.9%) children with unaffected siblings (P < .001). MMR vaccination rates (≥1 dose) were 84% (n = 78 564) at age 2 years and 92% (n = 86 063) at age 5 years for children with unaffected older siblings, vs 73% (n = 1409) at age 2 years and 86% (n = 1660) at age 5 years for children with affected siblings. MMR vaccine receipt was not associated with an increased risk of ASD at any age. For children with older siblings with ASD, at age 2, the adjusted relative risk (RR) of ASD for 1 dose of MMR vaccine vs no vaccine was 0.76 (95% CI, 0.49-1.18; P = .22), and at age 5, the RR of ASD for 2 doses compared with no vaccine was 0.56 (95% CI, 0.31-1.01; P = .052). For children whose older siblings did not have ASD, at age 2, the adjusted RR of ASD for 1 dose was 0.91 (95% CI, 0.67-1.20; P = .50) and at age 5, the RR of ASD for 2 doses was 1.12 (95% CI, 0.78-1.59; P = .55).

CONCLUSIONS AND RELEVANCE:
In this large sample of privately insured children with older siblings, receipt of the MMR vaccine was not associated with increased risk of ASD, regardless of whether older siblings had ASD. These findings indicate no harmful association between MMR vaccine receipt and ASD even among children already at higher risk for ASD.

—
By Matt Carey

Robert Kennedy, why can’t you actually apologize? My kid’s brain is not gone.

16 Apr

Robert Kennedy is here in my home state, making disparaging comments about my kid. Not specifically, you see. His comments were about those whom he wrongly considers to be vaccine injured, but that includes autistics and, as a part of that, my kid.

He is quoted by the Sacramento Bee as stating:

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone,” Kennedy said. “This is a holocaust, what this is doing to our country.”

Really? Their brain is gone?!?

Because, you know, autistics don’t have brains. They’re gone.

How insulting and ignorant can this guy be? Well, before you answer that realize that: he doubled down on his mistake. He apologized, but just for using the term “holocaust”. Stating that kids

“I want to apologize to all whom I offended by my use of the word to describe the autism epidemic,” Kennedy said in a statement. “I employed the term during an impromptu speech as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families.”

Mr. Kennedy leave my community alone. We are not your tool to attack vaccines, Mr. Kennedy. Your ignorance and stigmatizing comments are doing damage to my kid and autistics of all ages.

Here’s the thing: the autism as a vaccine epidemic idea is the most damaging idea since the refrigerator mother theory. It fuels an industry of charlatans who use the one two punch: you caused your kid’s autism, now let me sell you the cure. And it fuels stigmatizing language: telling an entire group of people that “their brains are gone” is so wrong, so very wrong, so damaging that I can’t believe you let that stand.

Sadly, I can believe that you let it stand. Most other people I would suspect would be quickly apologizing.

Mr. Kennedy, you have been given every gift imaginable. And I mean gift: you did nothing to earn these. You are a wealthy white male in the United States, with a famous name to boot. Again, none of this earned. I bring this up because as the parent of a disabled kid I am so saddened to see gifts wasted. Thrown away, no less. You could be using your brain to do so much more, and yet you remain fixated on vaccines and you use kids like mine in your attacks.

You are not done apologizing. Not by a long shot.

—
By Matt Carey

“light it up blue” isn’t autism awareness, it’s advertising for Autism Speaks

2 Apr

Tomorrow is Autism Awareness Day, by some calendars at least.  The United Nations, for example made a resolution in 2007 to designate April 2nd as “World Autism Awareness Day”.

Resolution adopted by the General Assembly on 18 December 2007 [on the report of the Third Committee (A/62/435)] 62/139.

World Autism Awareness Day The General Assembly,

Recalling the 2005 World Summit Outcome and the United Nations Millennium Declaration, as well as the outcomes of the major United Nations conferences and summits in the economic, social and related fields,

Recalling also the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, according to which children with disabilities should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community, as well as the full enjoyment of all human rights and fundamental freedoms on an equal basis with other children,

Affirming that ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities is critical to achieving internationally agreed development goals, Aware that autism is a lifelong developmental disability that manifests itself during the first three years of life and results from a neurological disorder that affects the functioning of the brain, mostly affecting children in many countries irrespective of gender, race or socio-economic status, and characterized by impairments in social interaction, problems with verbal and non-verbal communication and restricted, repetitive behaviour, interests and activities,

Deeply concerned by the prevalence and high rate of autism in children in all regions of the world and the consequent development challenges to long-term health care, education, training and intervention programmes undertaken by Governments, non-governmental organizations and the private sector, as well as its tremendous impact on children, their families, communities and societies,

Recalling that early diagnosis and appropriate research and interventions are vital to the growth and development of the individual,

1. Decides to designate 2 April as World Autism Awareness Day, to be observed every year beginning in 2008;

2. Invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism;

3. Encourages Member States to take measures to raise awareness throughout society, including at the family level, regarding children with autism;

4. Requests the Secretary-General to bring the present resolution to the attention of all Member States and United Nations organizations.

76th plenary meeting 18 December 2007

While I’m sure that Autism Speaks lobbying had much to do with that resolution, it’s an awareness event. No where do you see any mention of Autism Speaks nor statements that we should “light it up blue”. Yet over the years, Autism Speaks has made autism awareness into autism speaks awareness. And no where is that more obvious than on April 2nd with their “light it up blue” event.

Is blue the color of autism? No. It’s the color of Autism Speaks. But Autism Speaks is out there asking people to shine blue lights for autism awareness. A whole section of their shop (yes, they have an online shop) is devoted to “light it up blue” merchandise. All complete with the Autism Speaks logo.

Here’s the text from the Autism Speaks web page on how to “light it up blue”. Each section brings you back to Autism Speaks. Shine a blue light..and project the Autism Speaks logo. Wear blue, including autism speaks pins or accessories. Blue=Autism speaks, basically.

How to LIUB

In honor of people with autism worldwide, iconic landmarks, hotels, sporting venues, concert halls, museums, schools, universities, bridges, retail stores, and thousands of homes will light blue beginning on April 2!

Light Homes, Businesses, Schools, and Landmarks Blue

Change outdoor or indoor white bulbs to blue bulbs.

Tint windows with blue gel sheets

Cover existing fixtures with blue gel filters

Project the Autism Speaks puzzle piece or Light It Up Blue logo on walls or buildings

Wear Blue

Ask family, friends, coworkers, and staff to wear blue (ties, scarfs, shirts, etc.)

Supply Autism Speaks lapel pins, bracelets, or other blue accessories to wear during the month of April.

Post Blue

Personalize your LIUB Selfie Sign to tell us where you Light It Up Blue

Post your photos on Facebook, Twitter, Google+, Instagram, or Flickr with the hashtag #LIUB to be a part of the global autism awareness movement!

Turn your website blue with our Site It Up Blue kit or add the Light It Up Blue logo with a link to autismspeaks.org/liub

Turn your Facebook or Twitter profile picture blue

Tweet autism facts with the hashtag #LIUB

Raise Awareness with Blue

Distribute information about autism, World Autism Awareness Day, and Light It Up Blue in your establishment, neighborhood, or company.

Invite a local Autism Speaks representative to speak to your staff, school, or town about autism and the Light It Up Blue campaign.

Reach out to local media to let the community know about your great work for the autism community and your support of autism speaks!

Donate

Click here to donate!

Text AUTISM to 25383 to give $10*

Host your own fundraising event

Use this form to mail funds to Autism Speaks

Hey, you can take a “light it up blue” selfie. Complete with Autism Speaks logo.

yeah blue for AS

Autism Speaks is corporate autism. They do some things I appreciate and many things I really, really (really) don’t. For example, perpetuating the vaccines-cause-autism idea, an idea which may be second only to the refrigerator mother idea in causing harm to our community. Just in the past couple weeks Autism Speaks had to put out a new message on the idea, because the science based and helpful message by their Chief Science Officer conflicted with the non-science educated founder’s beliefs. Autism Speaks doesn’t have autistic voices in important positions within the organization, an amazing position given the sizable self-advocate population they claim to serve. Autism Speaks has a history of perpetuating stigmatizing messages (search for “I am autism” if you are unaware of this). Autism Speaks has funded quality research over the years and I appreciate that. But every time I start thinking Autism Speaks is starting down a good path they do something that reminds me: they are not my family’s autism organization. They don’t represent my values. They don’t represent my family.

I won’t be “lighting it up blue” tomorrow. I won’t be encouraging people to “light it up blue”. I hope people will be more aware of the needs of people like my kid. I hope more that they will act. I will follow up with another post, but I’ll say it here now: remember the phrase “think globally, act locally”? Feel like donating to an autism charity? I bet you have an autism school in your area and autism schools need donations. I bet there are adult programs in your area that could use some support. That’s my suggestion for April 2nd.

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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.

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By Matt Carey

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

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