Archive | May, 2012

Stem Cell “therapy” for autism: a warning

30 May

A recent news article focused on autism researchers who are also autism parents. One of the researchers in Autism scientists search for help, for their own kids’ sakes is Ricardo Dolmetsch, whose work on stem cells and autism was one of the highlights of IMFAR 2011 and was a focus of NIMH director Tom Insel.

He knows autism. He knows stem cells. And he has a very clear statement to offer on those offering stem cell “therapies”:

Dolmetsch says he also tries to answer questions from other parents who write to him for advice. Because there are so few effective treatments for autism, many parents turn to alternative therapies. In many cases, however, those therapies are ineffective, a waste of money or, even worse, dangerous, Dolmetsch says.

Recently, he has gotten a lot of e-mails from parents looking to go abroad for mysterious “stem cell therapies,” he says, including treatments in which practitioners offer treatments made with stem cells derived from fat, at a cost of up to $30,000.

“There are a lot of hucksters,” Dolmetsch says. “They’re springing up everywhere. … In the best case, it’s fraud, because they will put the cells in your body and they will be attacked by the immune system and die. In the worst case, they will cause something terrible, like cancer. … This has to be fraud, because we are not about to put stem cells in anybody’s brain. People are super-desperate. I’m just as desperate as they are.”

MMS, or how to cure autism with bleach. Brought to you by AutismOne

30 May

There are so many strange theories about autism which come and go that one doesn’t have the time to read up on all of them. Such is the case with MMS, which I now know stands for Miracle Mineral Solution. Recently the chatter on some of the yahoo groups I subscribe to increased with discussions of MMS and I just didn’t read what they were talking about.

Dr. David Gorski at Science Based Medicine did look into this. His article Bleaching away what ails you goes into detail about MMS.

To put it simply, “Miracle Mineral Solution” is bleach. Like many alternative medicine treatments, proponents of MMS claim it can help almost anything. Including autism.

If you unfamiliar with it, AutismOne is a parent convention with a large focus on claims of vaccine causation and alt-med therapies for autism. When Andrew Wakefield lost his medical license for unethical practices, he was given a standing ovation at the following AutismOne conference. When Mark Geier’s medical license was suspended, he also was given a standing ovation. Year after year one can hear discussion of the failed idea about how mercury in vaccines caused an autism epidemic. There are some presentations at AutismOne which appear useful (such as special education law), but the fact that they have such low standards for science and treatment topics trumps whatever good they might do.

As in the talk this year on MMS (38 Children Recovered in 20 months: Autism Treatment with MMS). Slides for the talk are online.

The talk has a lot of the usual warning signs:

1) claims of recovery substantiated by anecdotes and testimonials.
2) pseudo-scientific claims (in this case discussion of the chemistry of the molecules)
3) reliance on non-scientific explanation of autism (in this case that autism can be cured by ridding the body of parasites)
4) re-defining adverse reactions as expected and helpful.

And it is this last point that is particularly troublesome. Many alt-med therapies result in adverse reactions. Read yahoo groups and you will see them frequently. For MMS you will see vomiting and diarrhea. Parents discuss ramping up the dose of MMS until the child starts to vomit, then backing off.

The presentation from AutismOne includes:

It is common to find that the child gets a fever. This is very good.

As well as a claim that the adverse reactions are “Herxheimer reactions”. Herxheimer reactions exist–search the Mayo Clinic website and you will find it for when syphilis is treated with penicillin. You won’t find it for when a child is made to drink bleach.

Why would a child have an adverse reaction to MMS? Because it’s bleach. Here is an FDA warning on MMS:

FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS)
Product contains industrial strength bleach

The U.S. Food and Drug Administration is warning consumers not to take Miracle Mineral Solution, an oral liquid also known as “Miracle Mineral Supplement” or “MMS.” The product, when used as directed, produces an industrial bleach that can cause serious harm to health.

The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.

Consumers who have MMS should stop using it immediately and throw it away.

MMS is distributed on Internet sites and online auctions by multiple independent distributors. Although the products share the MMS name, the look of the labeling may vary.

The product instructs consumers to mix the 28 percent sodium chlorite solution with an acid such as citrus juice. This mixture produces chlorine dioxide, a potent bleach used for stripping textiles and industrial water treatment. High oral doses of this bleach, such as those recommended in the labeling, can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration.

MMS claims to treat multiple unrelated diseases, including HIV, hepatitis, the H1N1 flu virus, common colds, acne, cancer, and other conditions. The FDA is not aware of any research that MMS is effective in treating any of these conditions. MMS also poses a significant health risk to consumers who may choose to use this product for self-treatment instead of seeking FDA-approved treatments for these conditions.

The FDA continues to investigate and may pursue civil or criminal enforcement actions as appropriate to protect the public from this potentially dangerous product.

The FDA advises consumers who have experienced any negative side effects from MMS to consult a health care professional as soon as possible and to discard the product. Consumers and health care professionals should report adverse events to the FDA’s MedWatch program at 800-FDA-1088 or online at http://www.fda.gov/medwatch/report.htm.

One has to question whether AutismOne spent any thought about promoting giving bleach orally or rectally to disabled children before accepting this speaker. Seriously, how hard is it to consider that forcing anyone, and especially disabled children, to drink bleach is a bad idea?

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

25 May

A study just out from US National Institute of Mental Health researchers analyzes a survey they performed. Even today half of sad children identified are not diagnosed until after age 5. Half of autistic school age kids are using some form of psychotropic medicine.

The study is discussed here:

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

And that discussion is quoted below:

Fewer than one out of five school-aged children with special health care needs were diagnosed with autism spectrum disorder (ASD) by age 2, according to new data from an NIMH-funded study. These diagnoses were made by a variety of health care providers, and most children in the study used multiple health care services (such as speech or language therapy) and multiple medications.

Background

Identifying ASD at an early age allows children to start treatment sooner, which can improve their later development and learning, and may also reduce a child’s need for specialized services or treatments later in life.

To determine the experiences of school-aged children with special health care needs, Lisa Colpe, Ph.D., M.P.H., and Bev Pringle, Ph.D., of the NIMH Division of Services and Intervention Research, collaborated with colleagues who conducted more than 4,000 telephone interviews with parents or guardians of a child between the ages of 6-17 who had a confirmed diagnosis of ASD, intellectual disability, and/or developmental delay.

These survey interviews were a part of the Pathways to Diagnosis and Services Study, sponsored by NIMH using funds available from the American Recovery and Reinvestment Act of 2009 (Recovery Act). Additional collaborators on this project include the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC) and the Maternal and Child Health Bureau at the Health Resources and Services Administration (HRSA).

Results of the Study

Key findings include:
The median age when school aged children with special health care needs and ASD were first identified as having ASD was 5 years.
Those identified as having ASD at younger than 5 years were diagnosed most often by generalists (such as pediatricians, family physicians, and nurse practitioners) and psychologists. Those identified later than 5 years were diagnosed primarily by psychologists and psychiatrists.

Nine out of ten school-aged children with special health care needs and ASD used at least one health care service, such as behavioral intervention or modification services, sensory integration therapy, cognitive based therapy, occupational therapy, physical therapy, social skills training, or speech or language therapy.

Social skills training and speech or language therapy were the most commonly used service, each used by almost 60 percent, or three out of five, of these children.

More than half of school-aged children with special health care needs and ASD used at least one psychotropic medication. “Psychotropic medication” refers to any medication used to treat a mental disorder.
Almost 33 percent of these children used stimulant medications
25 percent used anti-anxiety or mood-stabilizing medications
20 percent used antidepressants.

Further findings are available in the NCHS Data Brief and Frequently Asked Questions.

Significance
The new data detail the experiences of young children with ASD, describing when they are first identified as having ASD, who is making those identifications, and the services and medications the children use to meet their developmental needs.

What’s Next
NIMH encourages researchers to access and analyze the new dataset to produce more studies on the early life experiences and the diagnostic, service, and treatment issues relevant to children with ASD and special health care needs. The Pathways to Diagnosis and Services Study dataset can be accessed at http://www.cdc.gov/nchs/slaits/spds.htm.

Reference
Pringle BA, Colpe LJ, Blumberg SJ, Avila RM, Kogan MD. Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs. NCHS data brief, no 97. Hyattsville, MD: National Center for Health Statistics. 2012.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/

Autism Advocacy: Developing New Markets

23 May

Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “…strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

Student placed in cardboard box for time out, others called mentally retarded in their yearbook

22 May

Two stories out today show

In the first (see Teacher gets lengthy suspension after student put in box) as part of a “time out” punishment. A large cardboard box was found in a classroom. When a parent asked what the box was for, she was told that the box was for time outs for another child. The parent took a picture to document the box. Good thing as shortly afterwards the box was removed.

http://swfs.bimvid.com/bimvid_player-3_2_7.swf?x-bim-callletters=WCNC

According to the story that goes along with the video:

A middle school special education teacher accused of forcing a child with special needs into a cardboard box as punishment has been suspended without pay.

In another school-related story, a high school in Texas handed out year books that cited the disabilities of the special education students attending, including referring to some as mentally retarded:

The specific disabilties of students were cited in the yearbook, with some labeled as “both blind and deaf, as well as mentally retarded,” KDFW reported.

The yearbooks were collected and new ones are being issued.

note: this was edited after publication to improve the formatting of this article on the main LBRB page.

ASAN: URGENT! Ask Your Senators to Support a Ban on Aversives!

21 May

The Autistic Self Advocacy Network has called an urgent action alert to call for the ban of aversives in the state of Massachusetts, home of the Judge Rotenberg Center. Residents of Massachusetts can call their state senators and support legislation that could stop the use of aversives.

Ask Your Senators for a
Ban on Aversives in Massachusetts!

Last Friday, Massachusetts State Senator Brian Joyce filed two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry, the deadline has been extended to noon (12pm EST) on May 23rd!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org/

TPGA: IMFAR 2012: An Update on the ASD DSM-5 Recommendations

19 May

There is much discussion on the DSM 5 at IMFAR. This includes talks from Sue Swedo at the stakeholder’s lunch and a formal (and highly attended) conference talk The Thinking Person’s Guide to Autism has four of their editors at the conference and has an article on the DSM 5 discussion.

IMFAR 2012: An Update on the ASD DSM-5 Recommendations

We spoke with Sue [Swedo] at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR

More at the TPGA site.

Some first-hand reports from IMFAR

18 May

Here are some reports that have been written on IMFAR so far. IMFAR is a three day conference, with one pre-conference day. Saturday (tomorrow) is the last day.

Thinking Person’s Guide to Autism

IMFAR 2012: Genetic Variants in ASD

IMFAR 2012: On Communicating Autism Science

Autism: Friendships in Adolescence from IMFAR 2012

IMFAR 2012 Press Conference

Autism Science Foundation

Reactions from IMFAR Travel Grantees: Day 2

Reactions from IMFAR Travel Grantees: Day 1

Follow Twitter streams

IMFAR

#IMFAR2012

Edit to add:

Here’s an article by Estee Klar:
My First Impressions of IMFAR 2012

I hope to have some articles by autistics soon.

Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up

18 May

It’s been over 25 years since Ivar Lovaas published a study on Applied Behavioral Analysis which would made ABA therapy (for good or bad, you can find vocal proponents of both opinions) the “gold standard” for young autistic children.

Now, some of the children who participated in the early studies and ABA programs are adults. Bryna Siegel, a professor at the Univerisity of California at San Francisco is presenting preliminary results on adult outcomes at IMFAR. I’ve been waiting for the abstract for some time since reading the title of the talk online. Unfortunately, the work is obviously very preliminary. One can hope that more will be presented at IMFAR and more will come.

B. Siegel1, T. Sendowski2, O. Park3, S. Radhakrishna3 and W. Phuchareon3, (1)University of California, San Francisco, University of California, San Francisco, San Francisco, CA, United States, (2)Child and Adolescent Psychiatry, University of California, San Francisco, San Francisco, CA, (3)Children’s Center at Langley Porter, Child and Adolescent Psychatiry, University of California, San Francisco, San Francisco, CA

Title: Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up

Background: In the past 15 years, estimates of autism prevalence have increased to as high as 1:110 presently (2008, CDC). Utilization of special education, speech and language therapies, social skills training and occupational therapy by individuals with autism has increased dramatically, yet little is known about long-term effectiveness of this costly resource allocation (GAO, 2005). It is known that 95% of California adults with autism are unemployed and not living independently (SMART, 2010). Young adults with autism who are now 21-26 years old are the first cohort to have received early intensive behavioral interventions (EIBI), now the legal standard for a ‘free and appropriate public education’ (IDEA, 2004). It is now critical to ascertain whether this cohort, the first to receive EIBI, is better prepared for adulthood as it makes this transition.

Objectives: This preliminary study will examine whether 1) pre-treatment diagnosis and cognitive characteristics, or 2) receipt of EIBI or not, accounts for the most variance in adult outcomes.

Methods: We used a prospective longitudinal methodology relying on archival data from the UCSF Autism Archive. The archive includes initial diagnostic and cognitive assessments gathered by primary clinicians when these, now adult, subjects were 0-5 years old, as well as data indicating whether EIBI or less intensive interventions were then being used. Ss were re-contacted as adults, along with their caregivers, and new diagnostic (DSM-IV, ADOS), adaptive behavior (VABS), and status variables (living situation, employment) were collected. Data on interim treatment intervention were collected based on caregiver report. Intensity of services were indexed by numbers of a) one-to-one treatment hours per week b) total treatment hours, and c) ratio of one-to-one hours/ total treatment hours. This is an important study as pre-treatment data and treatment status data were collected prospectively.

Results: To date, we have identified 49 Ss initially seen at 0-5 years of age, before initiation of any EIBI who remain in our catchment area. We so far, have re-contacted 8 families scheduled for the post-test assessment. Telephone interviewing suggests some of these Ss were 1) low functioning initially, received EIBI and remain low functioning, 2) that some were high functioning, did not receive EIBI and remain high functioning, and 3) that some were high functioning, received EIBI and remain high functioning.

Conclusions: We will present preliminary findings on a small sample of at least 20 Ss that represent these three groups and provide preliminary discussion of pre-test and treatment data that may explain outcomes.

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