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Autism Speaks updates their mission statement. “Cure” is now gone

12 Oct

Stephen Shore alerted people on Facebook recently that change was coming to Autism Speaks. Stephen has now shown us that the mission statement has changed.

Here is the mission statement on the Autism Speaks website as it was in July:

At Autism Speaks, our goal is to change the future for all who struggle with an autism spectrum disorder.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Click the links to learn more about our leadership, our board of directors, our scientific boards and our family services committee.

Here is how it reads today:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

As Stephen Mark Shore wrote on his Facebook page about the change: “Cure” has been replaced with advocacy, support, and acceptance through the lifespan.

By Matt Carey

No, Wakefield’s Autistic Enterocolitis Does Not Exist

2 Sep

Listen to Andrew Wakefield talk for a while and he will tell you his work has been replicated. Usually claiming replicated multiple times and around the world. Since he says it, it gets repeated by his supporters in online discussions.

For those who get dragged into those discussions, here is another paper to reference. This one takes on the idea that there is a bowel disease specific to autism. Wakefield’s “autistic enterocolitis”

People have looked and, guess what, it isn’t there. Yes, autistics get bowel disease. Being autistic doesn’t prevent bowel disease. The fact that some do, indeed, get bowel disease isn’t what Wakefield claimed. He claimed a “new syndrome”.

It doesn’t exist.

Here’s the abstract. The group is reputable and, in fact, has expressed sympathetic views towards Wakefield.

Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms.

Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.

All patients had duodenal biopsies assayed for lactase, sucrase, maltase, and palatinase activity. Intestinal permeability was evaluated by rhamnose/lactulose test and measured by high-performance liquid chromatography-mass spectrometry. Intestinal inflammation was evaluated by fecal calprotectin and lactoferrin levels using enzyme-linked immunosorbent assay and histology.

Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. Disaccharidase activity was not different in autistic and nonautistic individuals. Fecal calprotectin and lactoferrin were similar in both groups. Differences between lactulose and rhamnose recovery and lactulose/rhamnose ratio in urine were not statistically different in patients with and without autism.

The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.

If you are getting ready to write, “but they might not have seen enough kids to find one with autistic enterocolitis”, according to Wakefield, most of the kids his team tested had his “new syndrome”. If that were true, this team would have found it.

Add this to “MMR causes autism” as one of the failed ideas of Andrew Wakefield. Not that he will ever admit it.

By Matt Carey

Emerging evidence indicates that children with disabilities in general and with autism in particular are frequent victims of murder-suicide

22 Aug

The title a modified version of a line from a recent study: A Case Study of Paternal Filicide-Suicide: Personality Disorder, Motives, and Victim Choice. This is a topic that many of us, autistics and parents, have been aware of and trying to prevent for years. Parents and caregivers are killing people with disabilities. Not frequently, but far too often. Once is too often.

This study, this story, reminds us of why we speak out. Why when someone downplays the value of an autistic life, we speak out. Why when someone tries to downplay the seriousness of a murder, we speak out.

The study discusses the case of a father who murdered his autistic son. The researchers were able to speak at length with the murderer and report the details behind the murder. This sort of view into a murder is rare.

There were three major factors that fed into the murder. First, the father is mentally ill. He had an undiagnosed schizoid personality disorder.

Some people will jump on this and say, “aha, here’s the reason. It isn’t what we say that caused the murder, it’s because the father was mentally ill.”

For any of you reading this: you are completely missing the point. We don’t downplay murder, we don’t downplay the value of autistic lives specifically to not feed into a murder such as this. You can say, “I won’t judge parents who commit murder and almost every parent out there will not be encouraged to commit murder.

Key word: almost. There are people like this father out there.

And if you don’t understand that statements like this ares harmful and damaging to autistics, that they tell autistics they are less valued than the rest of us in society, please step back and rethink that.

The second factor that played into this father’s decision to commit murder was revenge. He was separated from his wife and felt that she had moved on to new relationships, and he wanted to hurt her.

Instead of hurting her directly, he chose to murder his son. He didn’t consider murdering either of his typical daughters, but only his autistic son.

Oh, and there’s a fourth reason. The second part of the motive (first being revenge). This exemplifies the reason why we don’t feed the narrative that autistic lives are worth less, that their struggles mean they would be somehow better off not alive. This is that the father felt a sense of altruism in murdering is son.

Yes, altruism. We hear that again and again. That somehow the parent is helping the child by ending his or her life.

The authors begin the section on altruism with this discussion:

The offender was convinced that his wife’s effusive preoccupation with their son’s impairment and her support of the educational inclusion project would be detrimental to their son. With his and his son’s death, both of them would be liberated from what he experienced as the mother’s intrusive and overbearing interference. Also, the offender had long been preoccupied with what would become of his son when he reached adulthood. He thought of his child as a nice boy and he believed that his son would be far too good to survive in what the offender considered to be a dog-eat-dog world. He was convinced that, by killing him, he would in fact spare him from a cruel destiny: “He wouldn’t have a future and would only get in trouble, anyway.”

Some people don’t understand why so many of us promote acceptance. Let’s leave aside the obvious (accepting people for who they are is the right thing to do), the message of “non-acceptance” is damaging. It is hurtful. Beyond that, yes, it feeds the murder narrative. Consider this from the study, the discussion of how the father saw his son as “different” and was “not very happy with him”.

Concerning his son, though, there was also another side to his attachment. Although he loved him, the offender admitted that, in fact, he was not very happy with him. He did not like having a son who was “different” and impaired. Although he admitted being ambivalent towards his son, he nevertheless stressed that this would not have been a sufficient reason to kill him.

Also note that the father saw that his son “lived on another planet” and didn’t respond as expected.

To him it appeared that his son “lived on another planet.” Discussing the offence, he emphasized that, contrary to human behavior, mathematically-based computer systems are regarded as “intelligent and reliable.” As the offender explained, the output of a computer is determined by the input: “a computer can only produce a stupid answer if the initial question is stupid.” “Hence intelligent input ineluctably leads to intelligent output.” Although he did his best to feed his son with what he considered to be intelligent input, the output was not as he expected. As has been observed with individuals with schizoid personality disorder, the offender saw the world as being out of line rather than himself not being attuned with the world around him (Esterberg et al., 2010).

If I am somehow not getting the message across–

There are messages that are not only damaging, they lower the bar for those considering murdering autistics (and other people with disabilities).

“My kid is different and I can’t accept that.”

“My kid’s life is harder, so it is less worth living.”

“My life is hard/my family’s life is hard because of my kid.”

“That parent murdered his/her child. I can’t judge that parent because I haven’t walked in his/her shoes.”

Of course this discssion comes shortly after I have spoken out against Polly Tommey for using exactly this language. Language that downplays the seriousness of murders (here and here). She says she “won’t judge” parents who murder their autistic children. Further she says this is because she “hasn’t walked in their shoes”. Saying that means that there may be some reason, some experience from “walking in their shoes”, that could mitigate murder.

There isn’t.

In the past I have also criticized Ms. Tommey’s colleague Andrew Wakefield. He has not just downplayed murder, but has portrayed the murder of autistics by parents as an act of love.

I don’t want to make this discussion about Tommey and Wakefield. They just serve as examples of people who are doing the harm I speak against.

Here is a link to the paper and the abstract:

A Case Study of Paternal Filicide-Suicide: Personality Disorder, Motives, and Victim Choice.

Although evidence with respect to its prevalence is mixed, it is clear that fathers perpetrate a serious proportion of filicide. There also seems to be a consensus that paternal filicide has attracted less research attention than its maternal counterpart and is therefore less well understood. National registries are a very rich source of data, but they generally provide limited information about the perpetrator as psychiatric, psychological and behavioral data are often lacking. This paper presents a fully documented case of a paternal filicide. Noteworthy is that two motives were present: spousal revenge as well as altruism. The choice of the victim was in line with emerging evidence indicating that children with disabilities in general and with autism in particular are frequent victims of filicide-suicide. Finally, a schizoid personality disorder was diagnosed. Although research is quite scarce on that matter, some research outcomes have showed an association between schizoid personality disorder and homicide and violence.

By Matt Carey

Andrew Wakefield. He’s not anti-vaccine. He just thinks “This is a deliberate eugenics program, a deliberate population-control program.”

19 Aug 1471357679-pmx090116-conspiracycruise19

Remember the “ConspiraSea Cruise”? Well another story has come out on it, this time from Popular Mechanics: I Went on a Weeklong Cruise For Conspiracy Theorists. It Ended Poorly.

I feel bad for grabbing one line from the story, as the whole story is quite good. But for now, let’s just take a look at this one paragraph:

“Your bodies are owned by Big Pharma,” he said. “It’s turning into a science-fiction movie.” The audience gasped and shook their heads in disbelief. “This will be the end of the United States of America.” During the Q&A portion, Wakefield added, “This is a deliberate eugenics program, a deliberate population-control program.”

“This is a deliberate eugenics program, a deliberate population-control program.”

I’ve been told this was in response to a question about vaccines possibly being a part of a eugenics program.

This is the sort of statement Mr. Wakefield typically has avoided making public. It’s the sort of statement that plays well on the “ConspiraSea Cruise”, but in more reasoned company is clearly wrong and irresponsible. It’s the sort of statement that goes against the image of Wakefield as the “legitimate scientist who is wronged for ‘just asking questions'”.

I have no idea how Mr. Wakefield defines “anti-vaccine”. Readers here will recognize that I rarely use the term. So, let’s continue in that mode. Let’s not refer to him as “anti-vaccine”. He is strongly, and irresponsibly, and using misinformation, “anti-vaccine-program”. How can someone who believes that vaccines are “a deliberate eugenics program, a deliberate population-control program” be anything else?


By Matt Carey

Polly Tommey, she won’t judge autism parents who murder, but judges Fiona O’Leary for just criticism

12 Aug

Readers here may recall this recent article: Polly Tommey won’t judge parents who murder their disabled children. That’s part of the problem. We discussed this video where Polly Tommey tells us about how she won’t judge parents who murder their autistic children.

In a later video she used the “I haven’t walked in their shoes” excuse.

Since then Ms. Tommey, through her film distributor Cinema Libre Studio, has threatened to sue an autism parent. An autistic autism parent. Fiona O’Leary: Cinema Libre Studios and Andrew Wakefield’s Vaxxed team threaten autistic autism mom.

In a more recent video she has posted she flat out judges Fiona O’Leary.

“She’s a pain, that woman”.

“She claims to be on the spectrum. In that case I feel bad for you.”

“She hasn’t seen the film” (Fact check–Fiona has, indeed, seen Vaxxed.)

Here’s a word for Polly Tommey:



The practice of claiming to have moral standards or beliefs to which one’s own behavior does not conform; pretense.

Kill a kid: you will not be judged.

Criticize Polly Tommey: you will be judged.

Someone has her priorities seriously out of order. And it’s not Fiona O’Leary.

By Matt Carey

Deadline is TOMORROW to provide input to the IACC for the Strategic Plan. DO IT NOW!

28 Jul

The IACC (Interagency Autism Coordinating Committee) is revising the Strategic Plan for autism research. This is THE document that they produce that can influence how autism research money is allocated.

Do you need something from autism research (almost certainly the answer is yes). Let the Committee know what specifically you want. Do you want better services and educational plans for minimally verbal students? Better job supports for adults (adults who have high support needs or “just” significant support needs)? Let them know.

This document will shape what we can hope to get in autism research. It is worth spending a few minutes. Go here: Go now.

Here is the post I wrote about this a few weeks ago:

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.


Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.


That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?

By Matt Carey

Irish Examiner: US film studio threatens to sue autism-rights advocate

26 Jul

As I wrote about yesterday, Andrew Wakefield’s “Vaxxed” team, led by distributor Philipe Diaz of Cinema Libre Studio, threatened Fiona O’Leary (an autistic adult who is also the parent of autistic children). Well, it looks like the story has been picked up by the Irish Examiner.

The article starts:

A US film studio has threatened to sue an Irish autism-rights advocate if she continues to speak out against its controversial anti-vaccine documentary, Vaxxed: From Cover-Up to Catastrophe,.

West Cork-based mother, Fiona O’Leary, who wants to block the film’s release in Ireland and Britain, said she was outraged to receive a legal letter from California-based Cinema Libre Studios over the weekend.

Read the rest at US film studio threatens to sue autism-rights advocate

By Matt Carey