There was a big legislative battle here in California last year, where the hell were you faux autism advocates?

26 Oct

This past year we have been fighting a big battle here in California.  We were fighting to restore some of the services funding we’ve lost over the preceding years.  We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase.   And that’s a victory.  The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital.  Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.  These groups claim to be autism organizations. Many of them based on California. We have an individual, a doctor, who claimed to represent “all the autistic students in California”. We had people making a fake documentary dishonestly pushing the idea that vaccines cause autism. Including people who live in California. People, organizations who did nothing to help in this very real effort to improve the lives of people with disabilities in California.

The thing is, these groups and people were very active lobbying for change. They mounted a large, loud, self-destructive effort to stop a vaccine bill here, SB277.

Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill.  Not “lobbying against a vaccine bill and working for a restoration of services.”  Just lobbying against a vaccine bill.

By the way, “lobbying” is a very nice term. They fought, and not in the good sense of the word. They fought a nasty, dishonest fight. And lost. Hard.

Or to put it simply, they were wasting their efforts.  Working like vaccine antagonistics, not people interested in a better life for people with disabilities.

Let’s go through a partial list of those who failed in this effort.

The Age of Autism blog.  Article after article on the vaccine bill.  Nothing on the budget battle that I can see.  They are still going on about their failed efforts, harassing the legislator who spearheaded the bill.  AoA writer Kent Heckenlively lives here in California.  AoA founder JB Handley used to live here.  Kim Stagliano there wrote about the lack of adult services, blaming the lack of of services on people pushing for acceptance.  Here’s the thing, Kim, and sorry for how direct this is.  You’ve wasted over a decade running a blog that diverts efforts away from critical areas.  You aren’t just wasting your time, you are making other people focus their efforts away from making those adult services we so desperately need.  And this is not even counting your whole blog actively denying the existence of undiagnosed autsitic adults.  You know what?  If legislators knew there were a lot more autistic adults they just might be interested in doing something.  Tell them that there’s an “epidemic” coming along, hitting when some other legislator is in office, and they do nothing.

Robert “Dr. Bob” Sears.  You were perfectly willing to advocate, but just not for this bill?  Seriously, you took time off work to fly up to Sacramento and claim you represent all autistic students in California, but only to fight a vaccine bill.  Here’s the thing “Dr. Bob”, autistic students need advocates who are going to get them more services.  If you really think you represent all autistic students, you failed.  Failed hard.  Because I never saw you do a damned thing for kids. I never saw you do anything to help improve services.

Andrew Wakefield, Del Bigtree, Polly Tommey and the rest of you behind the fake documentary “Vaxxed”. Bigtree, you live here. Apparently you have no real connection to the disability community, just the vaccine-antagonistic groups. I hope so, because your disregard for our needs is striking. Wakefield, you have been a self-serving leach on our community for two decades. Expecting you to actually do something of value is something I gave up upon many years ago. Bigttree and Wakefield, you are using us, causing harm and giving nothing in return. Polly Tommey, you should know better. You should be doing something real, not just putting out junk films (apologizing for the brutal murder of Alex Spourdalakis? Shame on you, Polly Tommey). But, hey, you get paid to make a film that attacks vaccines by misrepresenting (let’s just call it what it is, lying) facts.

TACA, Generation Rescue, Jenny McCarthy, National Autism Association (and more): You are based in California. Please tell me I just missed your advocacy to make a real difference for people with disabilities here in California. Please tell me that when I just went over your blogs, I missed the articles calling for your membership to call in to legislators to support the budget increase. You have been downplaying your damaging support of the vaccines-cause-autism failed idea now. Why not actually do something valuable with your efforts? Selling families on fake therapies (stem cell clinics in Cancun, “ion cleanse” to treat autism and the rest), doesn’t count.

It would be one thing if you were just wasting your time fighting losing battles for bad causes. It would be one thing if you were just ignoring the real work that needs to be done. If would be one thing if you were just pulling advocates away from improving the lives of the disabled, pulling them away to attend rallies for useless, failed causes.

At this point you are probably expecting me to say something that amounts to “history will not look kindly on you”. The sad thing is that history will forget you. Will forget the harm you caused. Will forget that when the time came to really stand up and make a difference, you were somewhere else.

No one will remember me either. Or the hundreds of people who really carried the weight of change, both in the budget battle and elsewhere. That’s not what this is about. It’s about making change. Change for the good. I know you’ve convinced yourself that this is, indeed, what you are doing. Good. I also know you won’t change.

The vaccines-cause-autism idea is without a doubt the most damaging belief to have hit the autism communities. The “refrigerator mother” theory is a distant second. The idea that vaccines cause autism causes parents to live a life of shame and guilt for participating in something that didn’t happen. This guilt feeds the charlatans that sell fake “therapies” that are inflicted on children and adults in our community. And as long as these charlatans say “vaccines cause autism”, you never speak out about them. You join them in fake conferences or even host them for conferences where they sell their wares. And you divert advocacy away from topics like the budget battle, from actually improving the lives of people with disability, and instead focus advocacy efforts on fighting a battle you lost over a decade ago.

By Matt Carey

Dr. Joshua Gordon Appointed as New IACC Chair

25 Oct

The Interagency Autism Coordinating Committee (IACC) has just announced a new chair, Joshua Gordon. This follows the pattern of the IACC chair being the same as the director of the National Institute of Mental Health (NIMH).

Here is the announcement just sent out:

Joshua Gordon, M.D, Ph.D., who was appointed as the Director of the National Institute of Mental Health (NIMH ) in September 2016, has been appointed as the new Chair of Interagency Autism Coordinating Committee. Prior to joining the NIH, Dr. Gordon served on the faculty of Columbia University’s Department of Psychiatry from 2014-2016, where he used his training in psychiatry and neuroscience to combine laboratory-based studies examining mouse models of human psychiatric illness with clinical practice and teaching in general psychiatry. His expertise in neurophysiology, or the study of patterns of electrical activity in the brain that underlie behavior, has allowed him to investigate features of the neural circuitry that underlies mental health conditions such as schizophrenia, anxiety, and depression. He earned his B.A. degree in Biology from Washington University in St. Louis, and his M.D./Ph.D. from the University of California at San Francisco. He did his residency and fellowship in Psychiatry at Columbia University/New York State Psychiatry Institute. While teaching and conducting research at Columbia University, he also directed Neuroscience Education for Columbia’s Psychiatric Residency Training Program. Dr. Gordon has received several awards and grants for his research, including an IMHRO Rising Star Award, two NARSAD Young Investigator awards, an APA-GlaxoSmithKline Young Faculty award, and research grants from the National Institute of Mental Health. In his role as NIMH Director, Dr. Gordon oversees the lead federal agency for research on mental health disorders and conditions. With an annual budget of approximately $1.5 billion, NIMH supports more than 2,000 mental health and neuroscience-related research grants and contracts at universities and other institutions across the country and overseas. In addition, the NIMH intramural research program supports approximately 300 scientists who work in laboratories at NIH. The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure.

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.

OBJECTIVE:
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.

METHODS:
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.

RESULTS:
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.

CONCLUSIONS:
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?

1471357679-pmx090116-conspiracycruise19


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:

Hypocrisy

hy·poc·ri·sy

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