Thank you Kevin Moon Loh

25 Sep

An actor in a major musical production has a facebook post about a recent performance. In this performance, an autistic child made noise during a quiet part of the show. And Mr. Loh comes to the defense of the child.

The post begins:

I am angry and sad.
Just got off stage from today’s matinee and yes, something happened. Someone brought their autistic child to the theater.
That being said- this post won’t go the way you think it will.
You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them.
No.
Instead, I ask you- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?

Mr. Loh quotes Joseph Papp that theater is created for all people. It’s a message that resonates with my family. We have worked to make the theater experience accessible to our own child and also to other disabled people in our community. I am proud to say that my wife started on this effort even before the idea of a “sensory friendly” performance became big news. Proud not because she was ahead of the curve, but because this shows that this is an effort of passion on her part.

Mr. Loh, I thank you. Theater is for everyone.

—
By Matt Carey

Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“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.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

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
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
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

—
By Matt Carey

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Steve Silberman discusses Neurotribes in a New York Magazine interview, dispels common myth about Neurodiversity

24 Sep

Author Steve Silberman (author of Neurotribes) was interviewed in New York Magazine recently: The Problematic Obsession With ‘Curing’ Autism. Mr. Silberman has been interviewed a lot recently as his best selling book (Neurotribes) has rolled out, so one might wonder why I’m focused on this particular interview. Well, as it turns out, one statement clearly and concisely addresses many of the misconceptions (read straw man arguments) that people make about the neurodiversity movement.

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

If you are unfamiliar with the discussion, let me explain. Many of those who criticize the neurodiversity movement claim that the neurodiversity movement denies that autism is a disability.

If one wants to hunt down autism misinformation, a good first place to look is the blog “The Age of Autism”. So, I went to google, search silberman site:ageofautism.com, and read. Top of the list, an article titled “Autism Speaks vs. Steve Silberman”. Search the page for “disability” and get–

NO ONE CAN TELL US. We’re absolutely paralyzed by autism. We have the view of neurodiversity people who look at autism not as a disability, but as just another way of seeing the world.

See the difference? According to the Age of Autism writer, “neurodiversity people who look at autism not as a disability”. But, as Mr. Silberman tells us, it is precisely because we need to see autism as a disability in order to move forward on the making achievable improvements in the lives of autistic. (And not view autism some passing phase for a child, should we just find the correct industrial chemical to sprinkle on their gluten free waffles, as the Age of Autism would have it).

Go to the next article in the google search and one finds

The coverage below is very convincing. People who haven’t looked into the issues involved here might think Steve Silberman makes sense. So, if all the autism is really due to a broader definition and better diagnosing, shouldn’t we just recognize and provide for this minority of unique people among us? Calling autism a disability is really an insult.

In another article, the Age of Autism writes “Unless and until people like Steve Silberman can show us the one in 68 autistic adults out there, his book is fantasy fiction.”

And there you see the reason why AoA doesn’t like Mr. Silberman or his views. Because Mr. Silberman lays out in detail why we should listen to the man who discovered autism (Hans Asperger) and accept that autism is not new. If autism is not new, then the Age of Autism “The Daily Web Newspaper of the Autism Epidemic” (read, we exist to promote the idea that vaccines-cause autism) would be built on a false premise.

Which it is.

By the way, those details that Mr. Silberman lays out are ones which apparently the writers at the Age of Autism don’t have the time to read, as there’s no evidence anyone there critiquing his book has actually read it. Seriously, the articles are all based on interviews and reviews of the book rather than the book itself.

And we are left with the irony of the Age of Autism (a strong proponent of the failed idea that vaccines cause autism and that pretty much anything touted as a “cure” for autism should be purchased by parents and subjected to disabled children) calling something “fantasy fiction”.

Pointing out that the Age of Autism is wrong can be a full time job. Or at least a daily exercise in that the are pretty much always wrong. So, why bother now? Because, once again, I felt that Mr. Silberman spelled out one aspect of the neurodiversity movement so well. So well, in fact, that I will copy that paragraph here:

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

—
By Matt Carey

The (Budget) Fight Goes On

14 Sep

After the end of the California legislative session last week I was very curious as to how the budget battle went. We’ve been working to get funding restored for developmental services here and there was a big push to get this included before the legislature recessed.

But I couldn’t find information over the weekend. Thankfully an email came out today from Greg deGiere at The Arc & United Cerebral Palsy California Collaboration.

Short version–the restoration of the developmental services funding was not added to the budget but–and this is big–the legislative special session didn’t end.

Which means–the fight goes on. We will need calls, tweets, etc. in the future.

Here’s the email.

Dear Friends,

So what happened in the Capitol last week in the fight to save our developmental services?

The bad news is that the Legislature didn’t take any action before going home Friday night. The final push stalled by the end of the day, leading to the Democrats and Republicans angrily blaming each other for why they still couldn’t do anything for our community.

The good news is that they didn’t adjourn the special legislative session Friday as they had planned to — so the Legislature will officially be in session even though they aren’t here, and the legislators can be called back to Sacramento to vote if there’s a deal. And they created a Senate-Assembly conference committee with members of both parties to work on it this fall.

The other good news is that our community has built more political power — and put it into action in the Capitol on this — than I’ve seen any time in my almost seven years as a professional advocate for you.

Thanks to our community’s united effort for the last year, climaxing with a flood of calls to key legislators last week, every senator and assemblymember now is painfully aware of the problem and that we need to fix it before the system completely collapses. And they all feel pressure from the voters they represent to get it done this year. When they start complaining about how many calls they got, you know we have their attention.

Senator Ed Hernandez, who led the charge for us at the end, will be on the Senate-Assembly committee. So will Assemblymember Rob Bonta, who we know gets it and who put his vote where is mouth is in the budget process in June. We don’t know who else will be on the committee.

So the outcome is that our service system will continue to disintegrate while the fight go on.

One potentially very positive development last week was that Senator Hernandez said that his goal is for the Legislature to develop a bill to solve the problem and pass it to the governor for his signature or veto – the first time a legislative leader has publicly acknowledged that they should pass a bill whether Jerry Brown likes it or not. And since it will likely be a comprehensive bill that also fixes the MediCal funding program, which Brown wants a lot, it’s very unlikely he would veto it over our relatively small piece.

By the end of the night Friday, I was as angry as everybody else around here. Even after some rest this weekend, I still get mad when I think much about it. But the fact is that we’re getting closer to a real solution, and the key is to keep up the pressure – not give in to cynicism and fatigue, no matter how tempting.

So you’ll be hearing more from us in the coming weeks.

And thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

Last Day of Legislative Session – Just Two More Short Calls Needed NOW

11 Sep

Below is an action alert from United Cerebral Palsey and The Arc of California.

PLEASE–Make two phone calls today. Call your state senator and assembly member.
For those who aren’t sure who their state senator or assemblymember is or what their Capitol numbers are, click here.

Details below.

Dear Friends,

The statewide campaign of calling the 26 key legislators was fantastically successful yesterday. We definitely have their attention!

But for today and tonight — the last day of session — we need to switch tactics. Instead of calling the 26, everyone needs to call their own state senator and assemblymember. Every member of the Legislature needs to get calls from his or her own voters NOW!

The message should be short and sweet, such as:

– Give them your name and address so they know you live in the district they represent.
– Thank them for all their support in the past, but tell them we need them more than ever TODAY. Our developmental services system is collapsing and we are desperate!

Call their Capitol offices, not their local district offices. And don’t please don’t call a legislator’s personal cell phone unless you know them very, very well.

For those who aren’t sure who their state senator or assemblymember is or what their Capitol numbers are, click here.

And here’s an encouraging editorial from today’s Sacramento Bee.

Thank you for your advocacy – again today!

Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

Cochrane review: no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD

10 Sep

Chelation was never used by the majority of parents on their autistic kids. And that is a good thing. Chelation use is way down in the autism communities, but it hasn’t gone away. Many of those who use chelation are also vaccine antagonistic, and many of those rely upon the Chochrane reviews to support their vaccine-antagonistic arguments (generally by cherry picking and misrepresenting the Chochrane reviews). So, I was intrigued when I saw this abstract come up recently: Chelation for autism spectrum disorder (ASD).

A Chochrane team looked at the evidence for chelation and found that there is none.

A while back there was a plan for a chelation trial at the National Institutes of Health. It was cancelled when animal studies found a drop in cognitive scores when chelation was used without heavy metal intoxication. Which is to say, if you chelate someone needlessly, you could be shaving off IQ points. And since there is no evidence that autism is a form of heavy metal intoxication, chelation may actually have been harming already disabled kids.

I bring this up because the Chochrane review mentions a possible clinical trial in their last abstract sentence: “Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.”

Yeah, I know that teams of people with MBA’s and other non-related degrees will tell you that there is evidence. As will doctors who sell chelation. Or recommend it (Hello, Dr. Bob Sears, I’m talking to you and your community of non-autism docs). They are wrong. And potentially harming autistic children.

Here is the abstract

Abstract
BACKGROUND:
It has been suggested that the severity of autism spectrum disorder (ASD) symptoms is positively correlated with the level of circulating or stored toxic metals, and that excretion of these heavy metals, brought about by the use of pharmaceutical chelating agents, results in improved symptoms.
OBJECTIVES:
To assess the potential benefits and adverse effects of pharmaceutical chelating agents (referred to as chelation therapy throughout this review) for autism spectrum disorder (ASD) symptoms.
SEARCH METHODS:
We searched the following databases on 6 November 2014: CENTRAL, Ovid MEDLINE, Ovid MEDLINE In-Process, Embase,PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and 15 other databases, including three trials registers. In addition we checked references lists and contacted experts.
SELECTION CRITERIA:
All randomised controlled trials of pharmaceutical chelating agents compared with placebo in individuals with ASD.
DATA COLLECTION AND ANALYSIS:
Two review authors independently selected studies, assessed them for risk of bias and extracted relevant data. We did not conduct a meta-analysis, as only one study was included.
MAIN RESULTS:
We excluded nine studies because they were non-randomised trials or were withdrawn before enrolment.We included one study, which was conducted in two phases. During the first phase of the study, 77 children with ASD were randomly assigned to receive seven days of glutathione lotion or placebo lotion, followed by three days of oral dimercaptosuccinic acid (DMSA). Forty-nine children who were found to be high excreters of heavy metals during phase one continued on to phase two to receive three days of oral DMSA or placebo followed by 11 days off, with the cycle repeated up to six times. The second phase thus assessed the effectiveness of multiple doses of oral DMSA compared with placebo in children who were high excreters of heavy metals and who received a three-day course of oral DMSA. Overall, no evidence suggests that multiple rounds of oral DMSA had an effect on ASD symptoms.
AUTHORS’ CONCLUSIONS:
This review included data from only one study, which had methodological limitations. As such, no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD. Given prior reports of serious adverse events, such as hypocalcaemia, renal impairment and reported death, the risks of using chelation for ASD currently outweigh proven benefits. Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.

—
By Matt Carey

Extremely Urgent! Please Make 26 Calls Tonight or Thursday Morning!

10 Sep

We have a chance to restore services here in California but we have to act now. Below is an email with the details but we need calls tonight (Wednesday the 15th) or tomorrow morning. If you’ve been calling or sending emails, we need you again. If you’ve been putting it off, now is your chance to make a difference.

Call. As many of these people as you can. Call now.

Extremely Urgent!

Please Make 26 Calls Tonight or

Thursday Morning!

 

Dear Friends,

 

The Legislature is set to adjourn Thursday night or Friday, and we finally have a live bill – introduced today — that has a real hope of saving our community services.

 

We need everyone to pick up the phone and call 26 – yes, 26 – key legislators now (no matter how late it is when you read this) or first thing Thursday morning! They have voice mail if you want to call tonight.

 

The voting in the first Senate committee should start shortly after 9 Thursday morning, with the votes in the full Senate and maybe Assembly before the end of the day or Friday morning.

When you call, just give them your name and tell them:

 

–      This is the last chance to save our developmental services system. We’re desperate! Thank you for all your support in the past, but we need you more than ever now!

–      Please put politics aside and pass Senate Bill x2-14 by Senator Ed Hernandez!

–      And please increase the funding in the bill to allow the full 10% across-the-board increase that we need to stabilize our system!

 

Please call each of these key legislators, no matter where you live:

 

1.   Senator Jim Nielsen, 916-651-4004

 

2.   Senator Tom Berryhill, 916-651-4008

 

3.   Senator Anthony Cannella, 916-651-4012

 

4.   Senate President Pro Tem Kevin de Leon, 916-651-4024

 

5.   Senator Jean Fuller, 916-651-4016

 

6.   Senator Cathleen Galgiani, 916-651-4005

 

7.   Senator Steve Glazer, 916-651-4007

 

8.   Senator Bob Huff, 916-651-4029

 

9.   Senator Jeff Stone, 916-651-4028

 

10.                Assemblymember Katcho Achadjian, 916-319-2035

 

11.                Assemblymember Luis Alejo, 916-319-2030

 

12.                Assembly Speaker Toni Atkins, 916-319-2078

 

13.                Assemblymember Catharine Baker, 916-319-2016

 

14.                Assemblymember Ian Calderon, 916-319-2057

 

15.                Assemblymember Rocky Chavez, 916-319-2076

 

16.                Assemblymember Jim Cooper, 916-319-2009

 

17.                Assemblymember Matthew Dababneh, 916-319-2045

 

18.                Assemblymember Mike Gipson, 916-319-2064

 

19.                Assemblymember Adam Gray, 916-319-2021

 

20.                Assemblymember Brian Maienschein (“Mainshine”),916-319-2077

 

21.                Assemblymember Jose Medina, 916-319-2061

 

22.                Assemblymember Adrin Nazarian, 916-319-2046

 

23.                Assemblymember Henry Perea, 916-319-2031

 

24.                Assemblymember Sebastian Ridley-Thomas, 916-319-2054

 

25.                Assemblymember Rudy Salas, 916-319-2032

 

26.                Assemblymember Marc Steinnorth, 916-319-2040

 

Thank you for your advocacy!

 

Greg

 

PS. Please make the calls now!

 

Greg deGiere

Public Policy Director

The Arc & United Cerebral Palsy California Collaboration

1225 Eighth Street, Suite 350, Sacramento, CA 95814

It’s been 10 years since Tariq Nadama died needlessly at the hands of a chelationist

10 Sep

Ten years ago Tariq Nadama died. He was autistic and his parents brought him from the UK to the US for IV chelation. The drug used depleted his system of calcium and, as a result, his heart stopped. He died. And there was never a reason for him to be chelated.

Autism boy dies after alternative therapy

I can’t believe it’s been ten years. Tariq should be growing up. Sure, he would have challenges, but challenges are better than death.

It is very painful to remember his story, and in going through this I am reminded of many autistics who have died over the years and made the news. And many, many more never make the news.

I wish I had never heard your name, Tariq. I wish you had grown up and were spending time doing things you enjoy.

—

By Matt Carey

Another study on the gluten free/casein free diet and autism. This time focusing on kids with a sign of “leaky gut”

9 Sep

I recently wrote about a study of the gluten free/casein free (GF/CF) diet and autistic kids. The kids in that study were put on the diet and then given snacks with gluten and/or casein and their behavior was monitored. And nothing happened. Breaking the diet did not cause increases in autistic behaviors. But people complained that the study size was small (valid complaint, but not a killer) and that the kids in the study didn’t have GI disease (again, not a killer for the study. The GF/CF diet is marketed as a very general autism “therapy”).

But I wrote the previous article knowing that another study had just come out. A study focused on kids with “severe maladaptive behavior” and a sign of the so-called “leaky gut” syndrome. Gluten and casein supplementation does not increase symptoms in children with autism spectrum disorder.

The abstract is below. The researchers looked at 74 kids with “increased urinary I-FABP” I-FABP is intestinal fatty acid binding protein. And this is considered a “marker of gut wall integrity“. The study team found this marker elevated in a number of their subjects from a previous study.

While it isn’t clear in the abstract, the autistics in the study were on a GF/CF diet

To our knowledge, our study is the first randomised controlled trial to study the behavioural effects of adding gluten and casein to the diets of children with ASD who were already on a GFCF diet.

So, they had autistic kids who were on the GF/CF diet and they gave some of them gluten and casein snacks and the others GF/CF snacks. For a week. And they looked at the changes in behavior.

Both groups–those given gluten and casein and those who weren’t–saw improvements on measures of behavior. But there was no difference between the two groups on the measures of behavior.

There was no regression. No children made more autistic by gluten and casein.

In other words, no indication that the diet was doing these kids any good.

Here’s the abstract.

AIM:
A gluten- and casein-free diet is often given to children with autism spectrum disorder (ASD). We aimed to determine the effect of gluten and casein supplementation on maladaptive behaviour, gastrointestinal symptom severity and intestinal fatty acids binding protein (I-FABP) excretion in children with ASD.

METHODS:
A randomised, controlled, double-blind trial was performed on 74 children with ASD with severe maladaptive behaviour and increased urinary I-FABP. Subjects were randomised to receive gluten-casein or a placebo for seven days. We evaluated maladaptive behaviour before and after supplementation, using I-FABP excretion, the approach withdrawal problem composite subtest of the Pervasive Developmental Disorder Behavior Inventory and the Gastrointestinal Symptom Severity Index.

RESULTS:
The mean approach withdrawal problem composite score was significantly higher before supplementation than after, both in the placebo and in the gluten-casein group. However, the mean difference was not significant and may have been caused by additional therapy. There was no significant difference in gastrointestinal symptoms and urinary I-FABP excretion.

CONCLUSION:
Administrating gluten-casein to children with ASD for one week did not increase maladaptive behaviour, gastrointestinal symptom severity or urinary I-FABP excretion. The effect of prolonged administration or other mechanisms of enterocyte damage in ASD should be explored.

©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

KEYWORDS:
Autism spectrum disorder; Casein-free diet; Gluten-free; Intestinal fatty acids binding protein; Maladaptive behaviour

There are a lot of limitations with this study, and the authors do discuss them. But, frankly, if the GF/CF diet were as good as people claim, this study would have shown at least some benefit.

—
By Matt Carey

Gluten Free/Casein Free diet and autism studied…and no sign of a benefit

9 Sep

Perhaps one of the more common alternative medical approach to treating autism is the gluten free/casein free diet. And alternative means–not demonstrated to be beneficial and, very often, not even well founded on sound reasoning. And by common, it appears that about 17% of parents have opted for some form of special diet, so GF/CF in particular is likely less than that.

The GF/CF diet (as it is often known) was first proposed based on the “opiod excess” theory and the “leaky gut” theory. Neither theory has shown itself to be valid.

A previous review found that “Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.” The clinical trial just published appears to be based on a study presented at IMFAR a few years ago.

The study was fairly simple–they put children on a GF/CF diet. They then gave the children snacks. Some contained gluten and/or casein. Some did not. The parents didn’t know which snacks were which. The behavior of the children was recorded and correlated against the inclusion of gluten or casein. And no benefit was observed. Here’s the study:

The Gluten-Free/Casein-Free Diet: A Double-Blind Challenge Trial in Children with Autism.

and abstract:

To obtain information on the safety and efficacy of the gluten-free/casein-free (GFCF) diet, we placed 14 children with autism, age 3-5 years, on the diet for 4-6 weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems, or autism symptoms. Although these findings must be interpreted with caution because of the small sample size, the study does not provide evidence to support general use of the GFCF diet

The study group is small, so it is possible they missed some benefit. But if the parent survey often quoted were correct and 69% of children showed a benefit, this study should have picked that up.

There are, of course, people who are sensitive to various foods. People both autistic and not. So some fraction of the population will benefit from elimination diets. But the idea that many promote of elimination diets as the first thing to try, no matter what (and there are people who do), is flawed at best.

—
By Matt Carey

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