Archive | March, 2010

Urge the GMC to strike off Andrew Wakefield

31 Mar

On April 7th, the GMC reconvene to decide what is to be done with Andrew Wakefield.

You can play a part in helping to make sure that the GMC know the feelings – the anger – of the true autism and autistic community and by urging them to strike Wakefield off.

We all know how Wakefield has lied, grabbed money, attempted to conceal his role in murky dealings and covered up results that he knew would counteract his ‘science’. He still holds sway over a few hardcore antivax/autism believers and for his continued lying to them and relying on their belief alone he deserves to be struck off. His abuse of their inability to understand science is shameful.

Please email Kate Emmerson, the GMC solicitor concerned on KateDOTEmmersonATffwDOTcom stating how you feel about Andrew Wakefield and urging the GMC to strike him off.

White House Remains Steadfast In Support Of Disability Council Nominee

30 Mar

Disability Scoop has a new article about the nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman’s appointment has been on hold in the Senate, as noted in a New York Times article and on this blog (and others).

“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.

The appointment has the support of multiple disability advocacy groups. Again, from Disability Scoop:

Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

Social Security to run a deficit this year

27 Mar

The U.S. social security system is predicted to run a deficit this year. The government will pay out more money in benefits than they will take in taxes.

Social Security has two main functions: a retirement system for the elderly and a support system for the disabled. Throughout my adult life two things have been ongoing. First, social security has been taking in extra money. Second, people have been predicting a time when the number of “baby boomers” retiring would put the system into a deficit sometime in the future. The problem arises that the extra money taken in hasn’t really been saved. It has been “borrowed” by the rest of the government.

So, again with the two things theme: for parents of disabled children, we have two things to look forward to. First, a retirement when our social security benefits will likely be dramatically reduced. Second, a retirement where we get to watch the social security support for our children be dramatically reduced.

The Atlantic Online has a story Social Security is Not in Crisis, and We Don’t Need to ‘Fix’ It. The crisis is years away, we don’t need to do anything now:

In any case, there is really no reason to do anything about Social Security this year, for at least three reasons. First, this deficit isn’t even projected to last five years. Second, Social Security is an entitlement, but it’s also a ‘stimulus.’ It is money paid to retired folks who are likely to spend because the old have a lower savings rate and many of their savings have been gutted by the downturn. Third, fixing Social Security will always be tough politics, but delaying, cutting or reforming benefits the same year you’ve announced half a trillion in Medicare cuts is downright crazy.

We are not in a crisis yet, you see. That’s because the current deficit is due to the bad economy. No, the real red ink won’t start to flow until 2016, according to Atlantic Online writer Derek Thompson.

Some of us are looking a bit farther down the road than 2016. Try 2080, for example. Somehow I’d like to think that my disabled kid will have support well after I am gone.

The Stupid, It Barks.

26 Mar

When I told a few friends about this link I said that words failed me in regard to the utter stupidity of these people. They still do so all I’ve done here is repeat the news article below:

Anxious parents might be breathing easier as research dismissing the purported link between childhood autism and vaccines continues to pile up.

But we’re not done hearing about the vaccine-autism connection just yet: Some U.K. pet owners are convinced that vaccines do more than just trigger autism in people — they’re adamant that shots do the same thing to canine companions.

Canine Health Concern (CHC), a U.K.-based nonprofit, is calling on the country’s government to investigate potential risks of vaccinations recommended by veterinarians. Among the alleged dangers? Doggie autism.

According to CHC founder Catherine O’Driscoll, vets who vaccinate their canine patients once a year are guilty of overdoing it, with potentially devastating consequences.

Dogs are vaccinated against a handful of illnesses, including Lyme disease, distemper and influenza. Most also receive routine booster shots into adulthood.

“There is a massive group delusion within the veterinary profession, with members’ eyes glazing over as they numb out to the known science and perform veterinary procedures that are unnecessary,” O’Driscoll told the U.K.’s Veterinary Times. “[Some] veterinary bodies around the world have called a halt to the practice of annual vaccination. Why is the U.K. lagging so far behind?”

But the British Small Animal Veterinary Association is adamant that all science points to the effectiveness of annual vaccines. Spokesperson Mark Johnston told Veterinary Times that he’s seen hundreds of animals die because they weren’t vaccinated, but only witnessed two deaths from side effects of an injection.

Despite dismissal from veterinary experts, O’Driscoll and company are garnering more attention from U.K. pet owners. O’Driscoll has published two books on the subject: “What Vets Don’t Tell You About Vaccines” and “Shock to the System.”

The Daily Mail covered the group’s autism-vaccine position in early March.

O’Driscoll founded the CHC in 1994, after her two golden retrievers — Oliver and Prudence — died unexpectedly. She blames commercial pet food and a vaccine overload for their demise.

CHC advocates a raw-meat diet for dogs and cats, along with “natural remedies” like garlic for parasite control and flaxseed oil combined with cottage cheese as a cancer cure for ailing canines.

In the United States, vaccination decisions are largely left up to pet owners and their vets. The American Veterinary Medical Association acknowledges that once-a-year vaccines can “increase the potential risk of post-vaccination adverse events.”

Among the potential risks listed by the association are transient infections, autoimmune disorders and even localized tumors. Autism didn’t make the cut.

It’s also not on the radar of the United Kingdom’s Veterinary Medicines Directorate. An agency spokesperson reported that more than 80 million doses of different vaccines have been administered to dogs since 1985, but it has received fewer than 7,000 reports of side effects, according to the Daily Mail.

The CHC’s chief complaint is that dogs who’ve been vaccinated often suffer from “dramatic changes in behavior.” The group claims that those personality changes are a symptom of autism.

Most veterinarians, however, have several other explanations. A dog’s sudden personality changes have been attributed to hypothyroidism, diabetes, brain tumors and, perhaps most likely, to hormonal fluctuations, as Fido copes with surging, preneutered teenage hormones.

Autistic girl assaulted by elementary school classmates

26 Mar

From CBS News: Three Florida Elementary Students Charged in Sexual Assault of Autistic Girl in School Bathroom.

Three elementary students were charged Wednesday in connection with a shocking alleged sexual assault March 3 on an 11-year-old classmate whose mother says suffers from a high functioning form of autism called Asperger’s

Two kids acted as lookouts. Add the school as accomplices, in my view:

The girl’s mother and her attorney told CBS affiliate KFOR that she wasn’t notified by Norland Elementary School officials about the incident for two days, but her mother could tell something was wrong.

Two days?!?

Here’s a comment that I wish didn’t have to be said:

The victim’s mother said her daughter is “very aware of what happened to her.”

Listen to parents…except when they say things you don’t want to hear

25 Mar

How many times do we hear, “Listen to the parents” on medical issues involving their autistic kids? Usually this comes from alternative medical groups who don’t have the science to back up the safety and efficacy of their therapies. What happens when a parent disagrees with these groups?

In Lawsuit against alternative medical practitioners Usman and Rossignal we discussed a father who has brought suit against prominent Defeat Autism Now (DAN) doctors Usman and Rossignol, and the laboratory Doctor’s Data.

Orac, at Respectful Insolence, has discussed this case as Suing DAN! practitioners for malpractice: It’s about time, where he uploaded the actual complaint.

In that complaint the father is alleging many things. High amongst them is the question of whether the “challenge” chelation tests are valid, These were used on his child and supposedly showed heavy metal poisoning. In a challenge chelation test, a chelator drug is given to a child before a urine test is taken. Chelators are designed to draw metals out of the body and allow them to be excreted through the urine (and other ways). There are no standardized references for metal contents in challenge testing. The American College of Medical Toxicology has made a very clear statement about challenge chelation testing. Here is their conclusion:

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

Recall, challenge testing is noted in the lawsuit. From the section of claims against the Doctor’s Data (who are also defendents in the lawsuit):

The non-standardized method of testing that Defendant utilized on or about April 22, 2004, January 27, 2006, January 13, 2007, February 26, 2007, May 26, 2007, August 6, 2007, October 30, 2007, November 13, 2007, January 12, 2008, January 26, 2008, April 26, 2008, October 29, 2008, and March 27, 2009, wherein specimens were collected after the administration of a provoking agent and compared to unprovoked or unchallenged specimens was an improper method of determining whether A.J. had a potentially toxic level of heavy metals in his system

So, challenge chelation testing isn’t scientifically validated, has no benefit, but was used to justify certain therapies on this child. How did the Autism Research Institute respond to this? They blame the parent’s marital situation.

No, really, I’m not making this up. Rather than accept the complaints on their face and give this autism parent respect, they dismiss his multiple complaints as being…well, you read it:

Recent articles by ABC News and the Chicago Tribune on M.D.s who subscribe to the Defeat Autism Now! approach to treatment indicate the spread of misinformation and misunderstanding in recent months. The complaints about Drs. Usman and Rossignol resulted from a custody case– a painful situation for any family, one that can lead to accusations that must be sorted out in a court of law—not the media

Yes, it isn’t because the father is really annoyed that he was told challenge chelation testing is valid, or that his family spent lots of money on testing and on chelation. It couldn’t be that the father has not seen benefit from these therapies. It isn’t any of that. It is a custody battle issue. For the record, the defendants in the case do not include his wife.

ARI defends their approach in rather vague terms:

The Defeat Autism Now! approach to autism invites the medical community to be more responsive, inquisitive, and knowledgeable about treating these disorders.

The approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals.

My view differs from the ARI statement. It would seem to this observer that the approach is the source of controversy. From their own website:

The best diagnostic test for toxic metal overload is the chelation challenge test. The chelation drug is administered, followed by a timed urine test to help assess the body’s burden of toxic elements.

This is in direct contradiction to the statement from the American College of Toxicologists. The ARI approach (including challenge testing) is a key point of the lawsuit. I am not able to reconcile this with the idea that the “approach itself a source of controversy”.

The great problem is rather that chronic, unaddressed illness plagues many, if not most, of the children and adults on the autism spectrum. These conditions, thoroughly documented in the scientific literature, often involve the gastrointestinal system and/or the immune system, but the medical establishment has been professionally insensible to what is a desperate situation in the expanding autism population.

Odd. If anyone outside of the alternative medical community ever makes a statement that the is driven by “desperation”, they are sure to get jumped on.

The focus of the Defeat Autism Now! approach is twofold: to provide patients with allergen-free nutritional support, to uphold and to repair the immune system as needed, and, if appropriate, to reduce the body burden of environmental toxins; to provide clinicians in-depth medical and scientific information, with Continuing Medical Education credits.

There is the mention of what is a main crux of the lawsuit, “body burden of environmental toxins”. That’s it. No mention of challenge testing. They mention that the approach includes reducing “the body burden of environmental toxins”, but doesn’t address the key question: when is this approach “appropriate”. How is that decided? The challenge testing approach has not, to my knowledge, ever been defended in court. This case is

The ARI press release doesn’t discuss the real questions here. Brushing this off as a custody issue is not doing anyone any good and is rather insulting to the parent bringing this suit forward and his child.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide

Clinical trial on Clinical and Immunological Investigations of Subtypes of Autism

24 Mar

The National Institutes of Health (NIH) have recently updated their webpage of featured clinical trials for autism. Many of the clinical trial recently discussed here at LeftBrainRightBrain are on that list. One that is on the featured list that I caught my eye is Clinical and Immunological Investigations of Subtypes of Autism. It is an old trial (started in 2006), but I thought it worth bringing up again.

The description is quoted below:

The purpose of this study is to learn more about autism and its subtypes. Autism is a developmental disorder in which children have problems with communication and social skills and display restricted interests and repetitive behaviors.

This study has several goals. One aim is to look at types of autism that are known, such as the regressive subtype, (where skills are lost). We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

We will look at several types of medical issues that may be related to autism, including immunologic problems. Children will be followed over the course of several years. We aim to capture medical problems that may be related to autism as they develop, and study outcomes in areas such as behavior and language, in order to explore known and new subtypes of autism.

Normally developing children (aged 1) with autism (age 1, and developmental delays other than autism (age 1), may be eligible for this study.

Depending on each child’s study group and age, participants may undergo the following tests and procedures:

Baseline Visit

* Medical and developmental history, physical examination, psychological, cognitive and medical tests to assess symptoms of autism or other developmental disorders, photographs of the child’s face, collection of hair, urine and baby teeth samples. If available, hair samples from the baby’s first haircut and from the biological mother’s hair are also collected.
* Overnight electroencephalogram (EEG): A special cap with electrodes is placed on the child’s head to measure brain waves (brain electrical activity) while the child sleeps in the hospital overnight. Healthy volunteers do not undergo this procedure.
* Magnetic resonance imaging (MRI) scan: The child stays in the scanner, lying still for 10 to 15 minutes at a time. Since it may be difficult for the child to lie still, the test may be scheduled for a time when the child is likely to be sleepy, or the child may be sedated.
* Lumbar puncture (for children in the autism). This test and the MRI may be done under sedation.

Follow-Up Visits

Follow-up visits are scheduled at different intervals, depending on study group, age and aspect of the study the child is enrolled in. The visits include a short interview session with the child’s caregiver and assessment of the child’s development and behavior. Some of the assessment measures used during the baseline examination are repeated, including symptoms ratings, behavioral tests and a blood test. For some children, the final visit will include repeats of the medical procedures.

The section that jumps out to my eye: We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

Yes, the NIH is looking at whether regression and immune functioning might be linked. As noted above, this study has been ongoing for some time: the trial was first listed in 2006. But, hey, I figure if I forgot about this one and found it interesting, others might be interested in this as well.

Autistic Teenager picks first two rounds of NCAA Tournament perfectly

24 Mar

March is the month for college basketball tournaments, “March Madness”. An autistic teen picked the winners in the first two rounds of the tournament according to the story: Autistic Teen Picks First Two NCAA Rounds Perfectly

http://www.nbcchicago.com/syndication?id=88949517&path=%2Fhome%2Ftop_stories

The odds of doing this randomly are quite high. Even experts have failed to predict the outcome so far:

ESPN estimates around 4.78 million played in their bracket challenge, but no one picked all the games correctly. The leader at ESPN’s bracket has already missed four games.

Spoiler alert–here’s the last couple paragraphs.

Alex picked Purdue to win the whole thing. That just happens to be his brother’s alma mater.

“They’re his favorite for that reason,” Diane said. Or maybe he knows something no one else does.

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