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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

No, Dr. “Bob” Sears, you don’t represent the autistic children of California

15 Apr

I’ve been told that testifying before the California Legislature today, Robert “Dr. Bob” Sears, stated either exactly or words to the effect of, “On behalf of 79,000 children with autism in California schools I strongly oppose this bill”.

No Bob, you don’t speak on behalf of the autistics in California, be they students or adults. You don’t. Never have and never will. You are merely a second rate (to put it nicely) pediatrician who puts children like mine at risk by increasing the chances of outbreaks of infectious diseases. OK, not merely, you also promote faux medicine claiming to treat autism.

You know what keeps me up at night, Bob? The fear of my kid going through a state of constant seizures. You know what can cause that? Infections. The sort that you and I just brush off can cause that. I have no idea what a major disease like measles will do, but it won’t be pretty. There’s only one way for me to find out and that’s an outbreak in California. And, yep, not everyone mounts a response to the measles vaccine. Guess how I will find out for sure if my kid is one for whom the vaccine doesn’t take? That’s right, by an outbreak.

And the same goes for multiple other vaccine preventable diseases.

Your patient imported measles years back, because you encourage parents to avoid vaccinations. You can frame it however you want, about how you are giving parents “choice”, but the truth is you just give out bad advice. It’s one thing for the average internet troll to give out bad advice, but you are supposed to be a physician.

On that topic, I live in California, have family not far from your practice and could, if I chose to, visit your office for consultation and treatment. I never will. Not just is your stance on vaccines dangerous, but your approach to autism is as well. You are just another “defeat autism now” doctor who packages other people’s ideas into a book you can sell. Writing a book and attending conventions like AutismOne where others like you sell their faux medicine doesn’t give you the right to speak for my kid. Or any autistic kid in California.

You speak for yourself–a man who has left reason behind. Don’t claim to speak for my kid. Ever.


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.


By Matt Carey

Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.


By Matt Carey

Hey Jimmy Kimmel, thanks from your autism community!

3 Mar

Jimmy Kimmel, member of the autism community (he has an autistic family member) took on the anti-vaccine movement in a segment of his show:

He starts out with a monologue and then gives a PSA. The PSA is well worth watching. All the way through.

As you can imagine, this did not go over well with some people. He got a lot of hatred flung at him and claims that he is attacking the autism community. It’s the “use my kid as a human shield” defense.

And Mr Kimmel (member of the autism communities) stood his ground, with humor:

We need more people standing up against those who scare people about vaccines. And by “we” I mean the autism community and the developmental disability community. Our community is the most at risk for injury or death from infectious diseases. Diseases that injure or kill do so more to our communities (Why vaccination uptake matters to the autism community).


By Matt Carey

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

Bay Area Day of Mourning: Program Information and List of Names

2 Mar Featured Image -- 14205

Sullivan (Matt Carey):

I was unable to make the Bay Area Day of Mourning in person. Here’s an account, including a list of those named.

This list is long. Very long. And this is just those we know about.

Originally posted on Disability Visibility Project:

Bay Area Day of Mourning

Mourn for the Dead. Fight like Hell for the Living!

On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities. The event this year was co-organized by Brent White and Corbett Joan OToole.

The Day of Mourning is in its fifth year with similar local events taking place in cities across the US and internationally.

Below is the program, what you can do after the Day of Mourning, and the list of names recited at the event. This list for 2015 has 224 names of disabled people who were murdered since 2000. The list is created from three communities: the ASAN list, a list of people killed by authority figures, and a list…

View original 3,975 more words

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