Left Brain Right Brain

In a great response to a bad event last year, Corina Becker sparked “Autistics Speaking Day”. From her post: “On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face. ”

Read the full post, and the many that followed it, for a discussion of why “Communication Shutdown” was such a bad idea. I’m glad that a year later “communication shutdown” is gone, but autistics speaking day is not.

From the website:

To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast their voices, and to help the messages of Autistic people and non-Austistic allies reach the ears of as many people as possible.

From the FAQ:

Q. What do we do on ASDay?
A. The plan is that on November 1st social networking sites like Facebook, Tumblr, Twitter, as well as YouTube and blogging sites will see a huge increase in the posts of autistic people. We will post links to as many of these as we can to share the works of the autistic people. Our hope is that this will help promote autism awareness and autism acceptance. If you are a blogger or own a website, you can write a post on or around November 1st for Autistics Speaking Day and we will share the posts through this blog, Twitter, and Facebook. Everyone is free to participate in ASDay however they want. Some will just read through the posts, some will help to distribute the posts, and some will actively write them.

The internet is rife with bad information, some of it dangerous. This is not news. Unfortunately autism is a hotbed of bad and sometimes dangerous information. Unfortunately, in an attempt to revive the XMRV/autism link, Kent Heckenlively of the Age of Autism blog is creating a new, dangerous conclusion: perhaps Rituximab (or a similar drug) could be an autism therapy.

In XMRV (HGRV) is Not Dead – The Rituximab Story Mr. Heckenlively writes once again about XMRV.

Promoting XMRV as causative in autism is nothing new for Mr. Heckenlively. Continuing this promotion, even in the light of serious negative results (here, here, here, here) is not new. The promotion of medical treatments which are based on a misunderstanding of autism is nothing new to the Age of Autism blog. So why write about this instance? Rituximab is really serious medicine.

Serious adverse events, which can cause death and disability, include:[22]

Severe infusion reactions
Cardiac arrest
Tumor lysis syndrome, causing acute renal failure
Infections
Hepatitis B reactivation
Other viral infections
Progressive multifocal leukoencephalopathy (PML)
Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
Pulmonary toxicity[23]

Here’s the “logic” behind Mr. Heckinlively’s article: XMRV has been linked to autism (he ignores the more recent data against this idea). XMRV has been linked to chronic fatigue syndrome (once again, he ignores the data which goes against they hypothesis). Therefore, autism and chronic fatigue syndrome must share some sort of link. In this case, a small study has been published which claims that Rituximab helped a number of patients with chronic fatigue syndrome.

One of the many glaring problems in this train of logic is the fact that the researchers in this particular study looked for XMRV in their subjects. And didn’t find it. So, the link between this group of CFS patients and autism, tenuous as it was from the start, is basically absent. This does not deter Mr. Heckenlively:

The question of why rituximab’s depletion of B cells helps those with chronic fatigue syndrome/ME remains unexplained. The researchers specifically noted they had searched for XMRV and not found evidence of its presence, but that touches on the greater issue of whether the currently validated test for XMRV is accurate.

Yes. Since there is no logical connection between this study and autism, we should question whether the test for XMRV is accurate. Are there inaccurate XMRV results? You bet. That’s what got a lot of the CFG (and autism) must be linked to XMRV story going.

Prometheus discusses this in Don’t use GMO’s to Treat Autism!! (at least not this one). Including a link to the study Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study which is at the heart of Mr. Heckenlively’s story.

Let’s remind ourselves of that story: XMRV (HGRV) is Not Dead – The Rituximab Story . Yes, he’s trying to use the Rituximab study to promote the link between XMRV and autism. Even though the patients in the Rituximab study didn’t have XMRV! Mr. Heckenlively takes a stance that is quite familiar: the “I’m just posing a question and promoting dialogue” idea:

I can’t say I’m a fan of rituximab. It’s a drug that comes with a black box warning, meaning it can cause death. But what has been revealed about the etiology of chronic fatigue syndrome/ME, and possibly autism, may be truly remarkable. Other, less toxic medications which supposedly do much of the same thing are on their way to market. I’m not suggesting any solutions in this article.

This is the same tactic used, over and over, by David Kirby (author of Evidence of Harm and formerly a frequent contributor to the Huffington Post) in promoting vaccines as causing autism, mercury as causing autism and chelation as a cure. He was “just promoting dialogue too”. Thankfully Rituximab isn’t available without prescription like many chelators.

In case you think Mr. Heckenlively’s disclaimer is enough to distance himself from promotion of this as a potential therapy, here are a couple of excerpts from the comments to that piece:

It makes sense that Rituximab would have dramatic results in autism. But there might be much less risky ways. Also, how about long term results? Maybe what is the root cause of the B cell dysfunction is still there after a Rituximab treatment and the whole cycle will start again as the B cell population builds up again.

and

Great article, thanks. I agree with your conclusion, and some of the comments below. While Rituximab is a very expensive and a very powerful drug with black box warning – in other words not something to be considered lightly (unless maybe the person is severely ill and all other options have been exhausted), it is GREAT to have some solid pointers at last, a mechanism to target with softer, safer means.

No. Seriously, no. It doesn’t make sense that Rituximab would have results in autism, dramatic or otherwise.

With the passing of the Combating Autism Reauthorization Act (CARA), the IACC will continue to meet and plan autism research strategy. The terms of the original members of the IACC ended with the sunset of the original Cobating Autism Act (CAA). Those members can serve again, but the nomination process is now open for the next installment of the IACC:

IACC Call for Nominations Announced – October 28, 2011

With the enactment of the Combating Autism Reauthorization Act of 2011, the Department of Health and Human Services (HHS) has been authorized to continue to support the Interagency Autism Coordinating Committee (IACC) until September 30, 2014 and is seeking nominations for public membership on this committee. The Secretary of Health and Human Services, who will make the final selections and appointments of public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, but current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted.

The call for nominations will be open from October 28, 2011 – November 30, 2011. Please see the announcement below for detailed information regarding the requirements and how to submit a nomination.

2011 IACC Call for Nominations Announcement
IACC October 28, 2011 News Update: Interagency Autism Coordinating Committee to Continue into 2014; HHS Seeks Nominations for Public Membership

From Disability Scoop: App May Help Nab Handicap Parking Violators.

A smartphone app may soon be all that’s needed to crack down on illegal parking in handicap spots.

Officials in Austin, Texas are set to vote this week on a resolution that would allow residents to use an app to report handicap parking violators directly to law enforcement.

Under the plan, app users would take a photo of the offending vehicle and submit it to city officials who could send an officer to issue a ticket.

“The only way we’re going to be able to address the problem is if we enlist help from ordinary citizens,” Austin City Councilman Chris Riley told the Austin American-Statesman. To read more click here.

I bring this up because it is a bit of a pet peeve for me. There is a strip mall near where I live where I have often seen people parking in the handicap spot in violation of the law. The strange things I have noticed (in my small sampling, and totally anecdotal experience):

They are almost always SUV’s. Yes, those rugged outdoors people can’t walk the extra 10 feet from a different spot.

I see them in the early morning, when the parking lot is basically empty and other spots are, quite literally, only 10 feet away.

They are in front of the donut shop. Probably has something to do with the early morning times I spot them, but I always find the SUV/donut shop/not wanting to walk an extra 10 feet combination to be highly ironic.

Two stories out recently point to the tightening budgets that the

This one isn’t caused by economy. This is mismanagement. In AUDIT: Inland Regional Center must repay $10 million, the Press Enterprise discusses the results of an audit of one of California’s Regional Centers. The Regional Centers are private non-profit organizations which administer funds for California’s developmentally disabled population. Inland Regional Center (IRC) has had problems for the past few years and been placed on probation.

From the Press Enterprise story:

As for the center’s ability to repay the $9.8 million in improper expenses cited in the audit, that would be all but impossible, she said.

“We’re going to have to get direction from the department on that. We don’t have $10 million,” Fitzgibbons said. “We’re really working hard to improve things and do the best job we can do.”

Well, they’ve been audited and IRC has to repay the state $10M. That’s a lot of money, and could mean a reduction in services for the clients of IRC. People who are not responsible for the mismanagement.

The nonprofit agency that serves developmentally disabled residents in Inland Southern California improperly spent almost $10 million and must repay the state, according to a highly critical audit released Friday that found continued widespread problems at the San Bernardino-based Inland Regional Center.

One example of misspent funds was when $1M allocated for services for people with hearing, speech and/or vision impairment was used for the operation expenses in their resource library.

Another recent story: San Diego Unified School District is facing insolvency and possible takeover by the state:

http://www.kqed.org/assets/flash/kqedplayer.swf

California required school districts to budget as though there would be no cuts in funding. However, California also has automatic cuts in place should revenues not meet specific “trigger” levels. If the state misses the revenue levels, they will cut funds to the districts. While special education is not specifically mentioned, Special Education tends to be a focus of budget minded administrators, with comments of “encroachment” commonly heard.

This story was discussed online a few years ago. It has haunted me ever since. The story can be found online in Google Books (which carries The Rotarian) or at the Disability History Museum as “We Committed Our Child“.

The image says it all: a happy 1940’s family with a baby of their dreams:

At about 20 months, things changed:

By that time another baby was on the way, for we believed that she should have a companion. Those were happy months as we planned for the second child and tried to prepare Mary Lou for the newcomer, but then came a cloud. One evening when Mary Lou was 20 months old, she became violently ill, having shown signs of only a slight cold. Developing a high fever, she was lethargic and “loppy” for three days. We were frantic. The doctor prescribed rest, and Mary Lou, who loved her bed, cooperated nicely. Within a few days she was trotting about again.

It wasn’t like old times, however, for she tired quickly and was nervous and touchy. She seemed on occasion to be “out of this world” and was upset more and more often by the books that previously had brought hours of delight.

By the time our boy was born, three months later, we were deeply worried. Mary Lou’s nervousness increased; she went into screaming spells with no apparent cause, cast aside her books and toys, gradually stopped talking, became choosy about her foods, and refused to feed herself.

The parents faced 5 options:

1. Keep Mary Lou at home.
2. Place her with some relative or friend willing to assume the burden of her care.
3. Place her in a private institution.
4. Place her in a State institution.

Yes, that’s only 4. The fifth option they considered in theory (and rejected, thankfully): euthanasia.

They discuss the life they expected for their child at home, impact they felt their child had on them and their community:

Also, having witnessed the ridicule and ill treatment which residents of our home town turned on the “village half-wit” and his family, we understood what keeping her with us would mean to our family.

We decided we must look further, in justice to Mary Lou, her brother, ourselves, and the community.

And chose an institution:

So it was that we decided in favor of a State hospital. Taking Mary Lou to it was a heartbreaking experience, but we were fortified with the conviction that in this move lay the sole hope for happiness for all four of us. And we were greatly heartened by the appearance of the place. It resembled a college campus, with pretty brick buildings set amid sweeping grounds. There were no walls, no guards. Patients strolled, played, or rested outside their homelike cottages. In this community, we saw also, there were no thoughtless neighbors gossiping about the unfortunates and jeering at them and their families.

They kept contact with their child, and kept questioning their decision:

More than a year has passed since that day. We have kept in close touch with the hospital by mail and telephone and have made the 100-mile trip to visit our daughter at least once a month. The simple routine of good food, sunshine, and fresh air have done wonders for Mary Lou’s physical health. She is calmer and again is feeding herself. We still do not know what potentialities Mary Lou possesses, but we feel confident that whatever they are, the skilled, hard-working staff will labor earnestly to develop them.

And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely.

The full story can be found at the Disability History Museum. It isn’t very long.

That story was written 66 years ago.