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TPGA: Black and Autistic – Is There Room at the Advocacy Table?

8 Jul

An excellent article came out on the Thinking Person’s Guide to Autism last month: Black and Autistic – Is There Room at the Advocacy Table?

This article speaks to me because it takes on two topics that are very important to me. First, the under diagnosing and under serving of racial/ethnic minorities in the U.S.. Second, the recent cynical abuse of the African American community by people who are antagonistic towards vaccines.

In Black and Autistic – Is There Room at the Advocacy Table?, Dr. Pierrette Mimi Poinsett gives her perspective. Here’s one paragraph:

As both a Black pediatrician and mother of a son with severe mental health and learning disorders, I know that vaccines prevent diseases, save lives, and do not cause autism. Many studies unequivocally show that there is no connection between vaccine components and the development of autism. Autism manifests independently of the vaccine schedule. The reality is that autism is a complex neurodevelopmental condition that likely has both genetic and environmental components – components that do not include vaccines.

The full article is brief and to the point (my discussion is longer than the original article). I encourage readers to go to TPGA and read it.

This said, let me add a few thoughts of my own.

First, we do a poor job as a society in supporting people with disabilities, but this is a much bigger issue in racial/ethnic minority communities. This is very obvious. I found this over and over as I first explored the question of whether autism was an epidemic caused by vaccines. Countering this failure by our society has been a topic of my advocacy here, on the IACC and elsewhere.

Over the years it has been extremely frustrating to watch the groups who claim vaccines-cause autism deny this under diagnosing and under serving. The fact is that almost all autism prevalence studies show a lower apparent prevalence in minorities. And this presents a problem to the groups promoting autism-as-vaccine-injury: they need to explain why would vaccines (in their view) not affect minorities as much as non minorities?

I will also point out that these vaccines-cause-autism groups seem to be conveniently ignoring their past. Consider this example, an excerpt from an Age of Autism blog article from a few years ago (The Tipping Point: Questions about Autism, History, Race and Melanin)

Two years ago, it was unknown whether African American or Hispanic children had lower rates of autism than white children. Now there’s evidence—for what it’s worth— that certain groups are less affected.

A few years ago they were claiming that the lower rates of autism identification meant that African American and Hispanic children were “less affected” by vaccines. Now, with Brian Hooker’s (retracted) re-analysis of an old CDC dataset, they are claiming the opposite. Either way, they are wrong.

Why do they twist themselves into these logical pretzels? They have to accept that autism prevalence numbers are accurate counts of autistics (they aren’t) in order to support the idea of an epidemic. If they accept the fact that we still not diagnosing all autistics, then the data that shows an epidemic is in question. African Americans and Hispanics have lower reported prevalence numbers in the CDC autism studies. So they are forced to come up with explanations for some groups being “less affected”.

Getting back to that Age of Autism article we read:

Until it unfolded that the highest rate of autism in the world might be among the Minnesota Somali (1/28 or 1/26 depending on the source), it was a vague impression within the vaccine injury community that autism was, for lack of a better expression, a “blonde disease” or even a “redhead disease”. It just seemed to many that, with some exceptions, the paler the kid, the more likely they’d be impacted.

As we now know, the autism prevalence in the Minnesota Somali community is the same as the rest of the community around them. Moving past that point, did you catch that “blond disease” comment? Yes, rather than try to solve the problem of actually helping solve the problem of under diagnosis and lack of services in minority communities, they went into full denial mode and were labeling autism as a “blonde disease”. The same writer then goes into a complex (and confused) argument about how melanin is protective against mercury poisoning.

Did I mention that these Age of Autism articles are confused? The author ties herself into logical knots trying to cover all aspects of the discussion, while considering the conspiracy possibilities of each angle. Consider this line from the article:

On the other hand, if the CDC merely underreported rates of autism among minorities as part of a cover up of lack of assistance of minority children with autism, it would be appalling but not surprising.

Such a profound lack of awareness of facts there. First off, the CDC has been clear that the racial/ethnic disparities could be due to lower identification rates. CDC tends to be conservative in their language, but this early CDC report makes it clear that the disparities could be driven by socioeconomic factors. By this year’s report, CDC are actively calling for “[t]argeted strategies are needed to increase awareness and identification of ASD in minority communities.”

And, of course, there’s that “but not surprising” comment from the Age of Autism. Because one can expect people at the CDC, people who have dedicated their lives to helping people with disabilities, to be engaging in “cover ups”. One can believe this, if one abandons logical thinking. Ironically, it’s the Age of Autism and like-minded people who have abandoned their responsibility to advocate for communities with under-diagnosed autism. Yes, AoA, this is a big example of where you show that you are fake autism advocates and will abandon our community for your own attacks on vaccines.

We can also read this rather astounding logical pretzel–if vaccines don’t affect minorities as much, then that would mean that the CDC and others are somehow less evil than expected. No really, read this:

But if that disparity in autism incidence is real, considering government health agencies’ and mainstream medicine’s history of supporting racist policies like the Federal Violence Initiatives, etc., if differences in melanin or other forms of natural resistance among certain minorities do play a protective role against vaccine toxins, then one thing would be clear: the epidemic probably wasn’t planned. That’s because these same “eugenitic” general authorities and often racially exploitative pharmaceutical corporations (deaths from Pfizer’s Trovan in Nigeria?) would probably never have deliberately culled white children over black and Hispanic in the US.

Yes, somehow in their eugenic plan to use vaccines to to eliminate racial/ethnic minorities, the CDC missed the mark and “culled” whites instead. Per the Age of Autism’s amazing logic.

All this rather than AoA actually advocating for better awareness, better access to diagnosis, better access to services in racial/ethnic communities. You know, the sorts of things the CDC and research community have been working on for some time.

But now with bad Wakefield documentaries and junk science from Brian Hooker the African American community is no longer seen as a liability to the “vaccines-cause-autism” movement.

The sudden turnaround to embrace the African American community is so very cynical and hypocritical.

I could go on as I feel very strongly about the failure of our society to serve racial/ethnic minority communities. But I see that I’ve already written more than Dr. Pierrette Mimi Poinsett did in her excellent article: Black and Autistic – Is There Room at the Advocacy Table?.


By Matt Carey

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Shannon Rosa: Don’t Use My Autistic Son as a Reason Not to Vaccinate

10 Feb

Shannon Rosa is one of the Thinking Person’s Guide to Autism team. Her son Leo is extremely cool, and is autistic. The has a great perspective on the autism/vaccine question in that she initially believed the idea.

She was interviewed by The Stir in December and that interview is well worth reading: Don’t Use My Autistic Son as a Reason Not to Vaccinate

Here is the introduction from that interview (the full interview is at The Stir)

Shannon Des Roches Rosa isn’t the sort of woman you’d expect to see on Capitol Hill, advocating for vaccines for children. After all, when Rosa’s son Leo was diagnosed with autism in 2003, the California mom swore off immunizing her kids. Her youngest child, India, was 3 by the time she was vaccinated. And yet, today, at 10 India is fully vaccinated, as is Leo and Rosa’s older daughter, Zelly.

Rosa is the mother of an autistic child who came around to the safety of vaccines. And after allowing fear to rule her life for four years, she’s become a vocal advocate for life-saving immunizations, working with the United Nations’ Shot @Life campaign, Voices for Vaccines and other organizations to spread the word about vaccine safety.

As mother of an autistic child, the editor of Thinking Person’s Guide to Autism says she feels it’s her “ethical duty” to speak out on the behalf of vaccines … and her son.

Rosa spoke to The Stir from her California home about why she vaccinates … and why she refuses to let her son be used as a fear tactic in the war against vaccines.

The rest can be found at Don’t Use My Autistic Son as a Reason Not to Vaccinate


By Matt Carey

Thinking Person’s Guide to Autism: How ASAN Helped Issy Stapleton Get Justice

18 Nov

Isabelle (Issy) Stapleton is an autistic teenager. Her mother, Kelli, was recently sentenced in the attempted murder of Isabelle. The Thinking Person’s Guide to Autism has an interview with Autistic Self Advocacy Network’s Samantha Crane on How ASAN Helped Issy Stapleton Get Justice.

Here’s the TPGA introduction to the article:

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

The full interview can be read at How ASAN Helped Issy Stapleton Get Justice


By Matt Carey

Emily Willingham: winner of the 2014 John Maddox Prize for Standing up for Science

28 Oct

Emily Willingham is one of the best writers on the science and social aspects of autism. She also writes on other topics and is an accomplished researcher. Her journalism can be found at her site, EmilyWillinghamPhD.com, The Thinking Person’s Guide to Autism (the Site and the Book), DoubleXScience, Forbes, and elsewhere.

With all that in mind, it’s great to see that she’s been recognized for her work. SenseAboutScience.org has announced that she will share the 2014 John Maddox Prize for Standing up for Science:

Dr Emily Willingham and Dr David Robert Grimes are the two winners of the 2014 John Maddox Prize for Standing up for Science.

The announcement notes:

The judges awarded the prize to freelance journalist Dr Emily Willingham and early career scientist Dr David Robert Grimes for courage in promoting science and evidence on a matter of public interest, despite facing difficulty and hostility in doing so. The winners equally embody the spirit of the prize and, at this relatively early stage in their lives, have yet to receive recognition for their work bringing science and evidence to the public. Both Emily Willingham and David Grimes reflect Sir John Maddox’s passion for investigative journalism and for social engagement by young scientists.

On Emily Willingham in specific:

Emily Willingham, a US writer, has brought discussion about evidence, from school shootings to home birth, to large audiences through her writing. She has continued to reach across conflict and disputes about evidence to the people trying to make sense of them. She is facing a lawsuit for an article about the purported link between vaccines and autism.

The Prize is a joint initiative of the science journal Nature, the Kohn Foundation, and the charity Sense About Science. The late Sir John Maddox, FRS, was editor of Nature for 22 years and a founding trustee of Sense About Science.

And a statement by Michael Fitzpatrick, doctor, autism parent, writer and contributer to Left Brain/Right Brain:

Dr Michael Fitzpatrick, author MMR and Autism: What Parents Need to Know and trustee of Sense About Science, responded to the news about Emily Willingham: “She has provided a particularly valuable service in confronting specious theories attributing autism to diverse environmental agents, from milk and vaccines to endocrine disrupters and maternal antibodies. She has also exposed quack treatments for autism and challenged ill-informed reports suggesting a diagnosis of Asperger’s syndrome as an explanation of the behaviour of serial killers (pointing out that people with autism are much more likely to be victims than perpetrators of violent crime). As co-editor of the excellent Thinking Person’s Guide to Autism, she has helped to equip parents and people with autism with a critical approach to the evaluation of claims made by researchers and therapists alike.”

The full article is at SenseAboutScience.org.

by Matt Carey

Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey

4 Apr

I am way behind on blogging. So far behind that I didn’t even mention here an interview I did with the Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey. It was a pleasure to work with the TPGA people. If you don’t know them, take a look at their blog. Their book is the classic “book I wish someone gave me when my kid was first diagnosed”.

The IACC will be holding a meeting next Tuesday. Also, the IACC recently submitted a letter to U.S. Department of Health and Human Services Secretary Sebelius recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder.


By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

17 Dec

Slate has picked up Emily Willingham’s article on the Newtown shootings, as Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting. The URL says a lot:

http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html

Autistic does not mean violent.

It is very heartening to see large media outlets picking up on this message to counter speculation which started with the unconfirmed report that the shooter was autistic.

The article originally appeared as Autism, empathy, and violence: One of these things doesn’t belong here on Dr. Willingham’s blog EmilyWillinghamPhD.com and at the Thinking Person’s Guide to Autism.


By Matt Carey

TPGA’s Position on Autism Organizations That Support Autistic People

9 Oct

The Thinking Person’s Guide to Autism has published a five point list of principles they feel organizations that support autistic people must adhere to. This can be found on their site as “TPGA’s Position on Autism Organizations That Support Autistic People“.

I was going to copy them here, but that is basically the full article. I encourage readers to take the time to check out this list and follow the discussion at TPGA.


By Matt Carey