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IACC meeting next Tuesday

14 Jan

As always, you can submit comments for the meeting. You don’t have to wait for them to request comments. They will be voting on the Strategic Plan. This is a good time to submit comments.

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20892-9669
Phone: 301-443-6040
E-mail: IACCPublicInquiries@mail.nih.gov

Here’s the announcement:

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET at the William H. Natcher Conference Center, NIH Campus, in Bethesda, MD.

The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research. The meeting will also include a presentation on epigenetics and autism by Dr. Andrew Feinberg of Johns Hopkins University School of Medicine.

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. The meeting will be remotely accessible by videocast and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

To access the conference call:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/full-committee-mtg-announcement-January19.shtml

When toxic metals are in products there is outrage…isn’t there?

14 Jan

Imagine products that tested positive for a metal which studies have reported linked to autism severity. Imagine those products were supplements marketed for use with autistic kids. Would you expect some outrage, especially from the groups linking autism to toxic metals? I would.

Have you heard about the possible antimony contamination in some supplements manufactured by Kirkman Laboratories:

NOTICE TO OUR CUSTOMERS:

Jan. 7, 2010

Dear Kirkman Customer and Distributor,

It has come to Kirkman’s attention, that a raw material vendor has supplied Kirkman with stevia that has a higher content of antimony than may be acceptable for our special needs customers.

The problem is limited to only two lots of stevia, which were used in several Kirkman® products. These products affected by the high antimony levels are:

1. Zinc Liquid – – Product # 387/8 and 387/16
2. Super Nu-Thera® w/o A and D Powder – – Product # 447/454
3. DMAE 50 mg. Chewable – – Product # 489/90
4. Super Nu-Thera® Powder Orange – – Product # 410/454
5. B Complex with CoEnzymes Pro-Support Powder – – Product #399/7
6. TMG w/Folic and B-12 Powder – – Product #413/4 and 413/8
7. Vitamin C 250 mg Chewable Tablets – – Product #389/100 and 389/250
8. Trial sizes of the above seven products

You should stop using these products, destroy them and request a credit or replacement from Kirkman®. Please call our customer service department to make this request.

Raw material suppliers or nutraceutical companies are not required to test for antimony levels, so Kirkman® was not aware of this problem until two of our physician customers brought the issue to our attention as a result of their metal testing. We immediately had our laboratory research the issue. They quickly isolated the problem to two specific lots of stevia leaf extract. Kirkman® immediately stopped using the affected stevia and stopped shipping products that tested out at high antimony levels.

So that this situation does not reoccur, we have implemented a new policy that every raw material we use in our products will be tested for antimony.

Kirkman® apologizes for any inconvenience we may have caused because of this issue. We have instituted this voluntary action regarding the suspect products because we feel it’s the right thing to do. Kirkman® will not compromise on the quality standards we have been known for throughout our more than 60 years of business.

Sincerely,
Larry Newman
COO Technical and Regulatory Affairs
Kirkman Group

and

NOTICE TO OUR CUSTOMERS:

Jan. 12, 2010

Antimony Update

What are the effects of ingesting antimony?

There are still unknowns regarding the ingestion of antimony. Antimony is not typically a contaminant in raw materials. It is not part of the USP heavy metal screening that raw materials are typically tested for by importers or food and supplement manufacturers. Furthermore, there are very few studies that define what are safe or potentially harmful levels of antimony. Kirkman® has spoken with government regulatory agencies regarding safety issues from the use of antimony. Their response is still forthcoming. As a result, we don’t have all the answers currently.

Orally consumed antimony is typically eliminated by the body through urine and feces in several weeks and probably isn’t bio-accumulated. If this is the case, the levels in Kirkman’s products would pose no risks. The few clinical studies reported in the literature tend to indicate that levels less than 1 mg. of antimony per kg. of body weight are eliminated without side effects. Kirkman® will continue to update our website as more information becomes available. Thank you for your patience in this matter.

Larry Newman
Chief Operating Officer
Technical and Regulatory Affairs
Kirkman Group, Inc.

If you are like me, you’d be wondering if anyone in the alternative medical world care about antimony. The answer: You bet. A recent article touted by many in the biomed community, The Severity of Autism Is Associated with Toxic Metal Body Burden and Red Blood Cell Glutathione Levels claimed “this study demonstrates a significant positive association between the severity of autism and the relative body burden of toxic metals.” (for more on that study, see Prometheus’ analysys, Is DMSA safe and effective?). One of the toxic metals reported in that study…antimony.

The regression analysis found that the body burden of toxic metals (as assessed by urinary excretion before and after DMSA) was significantly related to the variations in the severity of autism, for each of the four scales. The metals of greatest influence were lead (Pb), antimony (Sb), mercury (Hg), tin (Sn), and aluminum (Al).

This was discussed by the alternative medical autism community. For example, in Toxic metals related to more severe autism symptoms, the blog author wrote:

A new Journal of Toxicology study seems to confirm that children with higher levels of metals – such as lead and antimony – in their urine had more severe autism, suggesting that metal levels in their bodies may contribute to its seriousness.

I always hear a lot about “EPA drinking water limits” when it comes to mercury. 2 parts per billion is the limit for Mercury. The limit for antimony? 6 parts per billion.

Now, keep in mind that the drinking water limit argument is almost always used incorrectly and, to this reader’s eye, as a scare tactic. But, I wonder if the same measures will be used if and when anyone in the alternative medical community decides to discuss the Kirkman supplements.

Kirkman Laboratories is one of the well known suppliers of supplements to the autism biomed community. Let’s say that one of the big pharmaceutical houses had made the announcements above, would there be outrage voiced on the blogs?

Response to Jake at Age of Autism

14 Jan

Jake Crosby has written a fairly humdrum piece about me which contains a few errors (as do some of the comments), most notably his claim that he’s tried to contact me. I’ve not recieved any contact from him at all either to my personal email nor via the Feedback widget. If Jake wants to contact me to discuss his piece I’m more than happy to do so – you can get me at kevleitchATgmailDOTcom.

The piece itself is a rehash of some of the early comment threads on here – I used to think vaccines caused my child’s autism, then I changed my mind. Jake speculates about why that might be without coming to any firm conclusion.

Board ordered suspension, probation, for Dr. Roy Kerry

12 Jan

The Pennsylvania State Board of Medicine has ordered license suspension, probation, and a medical skills assessment for Dr. Roy Kerry, 71, who is linked to the 2005 death of a five-year-old boy with autism.

Tariq Nadama died of cardiac arrest in Kerry’s office following an IV push of disodium EDTA, a chelating agent indicated for, among other conditions, the emergency treatment of hypercalcaemia. But there is no credible evidence that chelation is effective for treating autism. It was the boy’s third chelation appointment in Kerry’s office that summer. Tariq’s mother was in the treatment room when her son arrested.

Under the August, 2009, settlement agreement, Kerry admits that he “ordered the treatment of a patient that was contraindicated in the manner and choice of delivery.” The agreement also called for a three-year suspension of Kerry’s medical license, “of which six months will be active, and the remainder … shall be stayed in favor of 2-1/2 years of probation.” He was further ordered to refrain from IV chelation of a minor.

Kerry was further ordered to start a clinical skills assessment at the University of Wisconsin School of Medicine within six months of the order.

You can download the decision here .

Tariq’s death was a huge embarrassment to the autism “biomedical treatment” movement, which tried to characterize it as an accident caused by a drug mix up. EDTA comes in two formulations, and the type given to Tariq removes calcium, which is necessary for cardiac muscle contraction. The other version, calcium EDTA, is used for the treatment of lead poisoning.

But Kerry told investigators that he only kept disodium EDTA in his office. From the medical board report: “Respondent stated… that disodium EDTA is the only formula of EDTA he stocks in his office”; he “admits that calcium EDTA is available but that he has never used this agent.”

Tariq’s parents were referred to Kerry by Dr. Anju Usman, a Chicago-area DAN practitioner. According to records, Usman diagnosed the boy with high aluminum levels, and prescribed calcium EDTA. But Kerry said he treated Tariq for lead poisoning, even though his blood lead levels did not indicate the need for chelation.

Kerry became a DAN practitioner about a year after he caused Tariq’s death. He remained a member until last November, when a Chicago Tribune reporter asked the Autism Research Institute, the parent organization of DAN, about Kerry’s membership. Kerry was reportedly dropped one day after the Tribune inquiry.

Kerry’s lawyers claimed, in their client’s defense, that “some physicians believe there is a correlation between environmental factors, including heavy metal overload, and a propensity to develop autism.” Such “beliefs” have no credible scientific support.

The Butler County, PA, district attorney brought criminal charges against Kerry two years ago, but dropped the charges in May, 2008. District Attorney Richard Goldinger said at the time that he “asked the court … for permission to drop charges of involuntary manslaughter and child endangerment against Kerry after new evidence was presented by his defense.”

Goldinger did not specify at the time what information led to his decision. Kerry’s lawyers have maintained that Tariq’s calcium levels were 6.9 mg/dL at the time of death, which is below normal range for children, but above 6.0 mg/dL “which is generally thought to be fatal.”

So what is ‘cure’?

11 Jan

All I can offer is my own opinion, so thats what follows. Unlike some bloggers I’m not interested in a lawyerly fillibuster designed to ‘win you round’, just in presenting my own opinion.

Cure is by its very definition a total removal of something that ails somebody. Anything else is therapy. So now we need to ask if theres anything about autism that makes someone medically ill to the point of non or poor functionality. Of course there is. People who struggle to communicate such as my own child are ill in two ways. One is the fact that societies failure to accomodate more than one type of communication means that society ‘makes’ my child ill. Two is the fact that autism has affected xyr ability to communicate in an NT world and that to ignore the fact that xe exists in an NT world is futile and that therefore ‘therapy’ is required to address this.

Does this mean that speech and language therapy is a cure? No. I don’t think its possible to make that claim. SaLT doesn’t address autism, it addresses communication.

There is, despite what some will tell you, no cure for autism. No pill to take, no drug to inject, no strategy to follow that will remove autism. There are a variety of differing therapies, some of which are valid and some of which are not which will help an autistic person function in an NT world.

However, what we must never forget is that it is not only up to the autistic person to try and learn to adjust to the NT world, it is also up to the NT world to try and accomodate *all* types of divergence including autism (and schizophrenia, bipolar. quadroplegia etc). This will have an enriching effect on society which largely fears difference.

So we come to the question: would I (hypothetically) cure my autistic child? No. Its not my choice, its xyr’s. Would I would like to do is raise xyr to the point where that choice is able to be seriously considered by xyr alone. Is that likely. No its not. My child has severe learning difficulties. So what do I do? What is the correct strategy? The correct strategy is to live in the reality we have. There _is_ no cure. I give xyr every chance by ensuring the education and therapy xe recieves works as well as it can. And I have seen for myself in my step child just how affective such a strategy can be. Better to live in the real world than exist in a false world of quacky cure.

Update: Read Casdok’s post on the subject. Excellent. As is Clay’s post also.

Act now: Autistic Child Charged with Felony

6 Jan

Below is an email I received from Meg Evans of the Autistic Self Advocacy Network on a situation involving a child who is being charged with Felony Assault for resisting restraints in his school. Worse yet is the possibility that the student could end up being sent to a mental hospital pending a competency hearing.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. ASAN has created an Action Alert regarding the case of an 11-year old Autistic boy in Arkansas named Zakhqurey Price, who has been charged with felony assault after a school restraint incident. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. We are asking that you take action by contacting the school principal and superintendent to inform them of your concerns and by reposting the ASAN Action Alert set forth below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Below is the statement by Ari Ne’eman:

By Ari Ne’eman, ASAN President.

Hello,

In the past, we’ve written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we’d like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh’s grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property – something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law – but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh’s felony hearing – polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district – polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools’ reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh’s grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh’s right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

I usually avoid posting names and phone numbers like this. All to often blogs post such information in an attempt to intimidate. Take to heart Mr. Ne’eman’s call to be polite but firm when you call.

Autism people of the decade: special educators

6 Jan

Just in case you didn’t notice, it’s 2010. The first decade of the new millennium is over. After Mike’s recent post, Autism Personality of the Year, I kept thinking about who I would consider stand-out in the autism communities. Yes it is rather presumptuous for me as a non autistic parent whose child wasn’t even born at the turn of the millennium. As you can see, I’m not letting that stop me.

Time Magazine set a good standard with their “Person of the Year” category. “Person of the year” isn’t necessarily an honor, or a statement that the person was a force for good. That opens up a lot of possibilities when considering the past decade, and given that you can probably guess at a number of the people I considered.

A lot of money has been pumped into autism research in the last decade. There are a lot of excellent research teams. There has been a lot of excellent work done, but to my recollection nothing stands out as truly breakthrough. I am quite open to being corrected on that opinion, though.

When I ask myself, who really has made a difference in the quality of life for my autistic kid, it isn’t the researchers, the advocacy groups or the “personalities” in the autism community that I can point to. What has made a difference are the efforts of a group of therapists and teachers who have devoted themselves to low pay and hard work.

Unfortunately, all is far from perfect in special education and it is the bad stories that make the news. Stories about abuse, seclusion and restraint, bullying and the like are the stories that get discussed on blogs like this one. Add to that school administrations that are underfunded to the point of sometimes making some very bad decisions. But those stories reinforce the fact that good placements and good teachers are worth their weight in gold.

How Anti-Vaccine ‘Science’ Holds Back Credible Research

4 Jan

An expert panel says there’s no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

This is a totally non contentious piece of work. The panel examined all _credible_ research into the subject and decided there simply wasn’t anything available to support the idea of a things such as autistic entercolitis – a faux syndrome pushed by the section of autism anti vaxxers who believe Andrew Wakefields fake science.

Take careful note though of what they are saying:

1) That there’s no credible evidence. Parental anecdote is not credible evidence.
2) Thats autistic children may well have gut issues and that if they do they should be treated medically.
3) That special diets show no eficacy in _treating autism_ .

The issue for me therefore is that when autistic kids have gut issues they need to be treated properly by medical staff. This means making appointments that allow for the special needs of autistic people (either first in the day or last in the day to avoid waits, quiet waiting rooms with appropriate distractions and most of all well trained staff who won’t say caustic things to parents).

A TACA representative is quoted as saying:

“I’m filled with hope after reading this report,” said Estepp of the support group Talk About Curing Autism. “I wish this report would have come out 10 years ago when my son was diagnosed.”

Ironically, TACA who support the work of Andrew Wakefield probably _could_ have had a report like this ten years ago if the work of Andrew Wakeild hadn’t been so heavily promoted by groups like TACA.

The new report says the existence of autistic enterocolitis “has not been established.” Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research, which set off a backlash against vaccines that continues to this day.

Quite understandably, researchers didn’t want to get involved in a field tainted by a person like Wakefield and his demonstrably false and disproven idea that MMR causes or contributes to autism. If they did, when they came out with science that contradicted Wakefield they would be subject to the same sort of hate crimes currently perpetrated against numerous other scientists such as Paul Offit who has recieved death threats. Who would want that?

Quite simply – if people like Wakefield admit their error and then shut up, more science will be done that will reveal more results groups like TACA may well support.

Autism Clusters Found: areas with high incidence of autistic children

1 Jan

Researchers at the U.C. Davis MIND Institute has discovered regions in the state of California that have notably higher autism incidence. But the story is more complicated, and more sad, than one might think at first. Instead of indications of an “autism epidemic”, these clusters point to the fact that minority and poor children are much less likely to receive autism diagnoses.

I don’t have the paper yet (I’m still trying to find the abstract), but articles in the Woodland Daily Democrat and the San Diego Union-Tribune are reporting the story.

The clusters do not appear to point to environmental causes. Instead…well, read for yourself:

Researchers said that in this investigation the clusters probably are not correlated with specific environmental pollutants or other “exposures.” Rather, they correlate to areas where residents are more educated.

Children with autism diagnoses in these clusters are more likely to be White and have parents with high education levels. Again, a quote:

“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. Instead, the differences in education, age and ethnicity of parents comparing births in the cluster versus those outside the cluster were striking enough to explain the clusters of autism cases,” said senior author Irva Hertz-Picciotto.

Kids in the “clusters” are about twice a likely to be diagnosed autistic and kids in nearby areas.

Twice as high.

To the many of us armchair epidemiologists who who have looked closely at the California Department of Developmental Services (CDDS) data, this comes as no surprise.

For me, the most memorable discussion of the autism clusters came from Autism Diva, in her post from July 1997, Malibu and Compton: Compare and Contrast.

Here is a graph from that post:

The South Central Regional Center, in a predominantly non-White, poor area of the Los Angeles basin, had an administrative prevalence of 33 per 10,000. Compare that to Westside Regional Center with a prevelance of 84. Westside is a much more affluent are with a higher proportion of White families.

From the San Diego Union-Tribune:

“There is mounting evidence that at least some of this clustering results from the greater access and utilization of services by those with more years of schooling,” the UC Davis researchers wrote.

Yes, there is a certain “I told you so” moment here. This blog, Autism Diva, Autism Natural Variation, Autism Street and others have been pointing out the apparent autism clusters in the raw CDDS data for years. Long before I started blogging. But the real story isn’t the effect such clusters have on the idea of the “autism epidemic”. Rather, this is a clear indication that we are underserving the disabled in our minority and poor communities. This is just plain wrong.

It is long past time for real autism advocacy organizations to work on increasing awareness and access to services in underserved areas. The autism “clusters” are probably not real. From where I sit, what is real are the “anti–clusters” of undiagnosed autistics, minorities, the poor, and, yes, adults.

Older dads contribute to autism

31 Dec

Just a quick one as I haven’t read the whole paper yet but it’ll be of interest to readers of this blog so:

Advancing paternal age is associated with deficits in social and exploratory behaviors in the offspring: a mouse model.

BACKGROUND: Accumulating evidence from epidemiological research has demonstrated an association between advanced paternal age and risk for several psychiatric disorders including autism, schizophrenia and early-onset bipolar disorder. In order to establish causality, this study used an animal model to investigate the effects of advanced paternal age on behavioural deficits in the offspring.

METHODS: C57BL/6J offspring (n = 12 per group) were bred from fathers of two different ages, 2 months (young) and 10 months (old), and mothers aged 2 months (n = 6 breeding pairs per group). Social and exploratory behaviors were examined
in the offspring.

PRINCIPAL FINDINGS: The offspring of older fathers were found to engage in significantly less social (p = 0.02) and exploratory (p = 0.02) behaviors than the offspring of younger fathers. There were no significant differences in measures of motor activity.

CONCLUSIONS: Given the well-controlled nature of this study, this provides the strongest evidence for deleterious effects of advancing paternal age on social and exploratory behavior. De-novo chromosomal changes and/or inherited epigenetic changes are the most plausible explanatory factors.

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