AutismOne: Don’t snark on me…we’ve got security and police!

28 May

Remember Jamie Bernstein? Her site, hug me, I’m vaccinated, should give you an idea of her stance. She’s the woman who took a picture with Andrew Wakefield at his big rally last year, and slipped him a note that said

Dear Andrew Wakefield,

I know that you truly believe that what you are doing is helping people and that the ends justify the means, but I just want you to know that the things you are doing –- the actions you have taken in the past have hurt people –- killed people. Your work has scared and manipulated parents into not vaccinating their children, putting them and their entire community at risk, all in the name of safety. Children have died because of you. I just want to make sure that you fully understand that.

Sincerely,
Jamie

It turns out that Ms. Bernstein attended AutismOne this year. AutismOne is a parent conference that promotes, amongst other things, the vaccine-injury model of autism. Last year they gave Andrew Wakefield an award–after he was struck off the register in the UK for ethics violations. This year they are hosting talks by Mark and David Geier, the father-son team that has recently run afoul of the medical authorities in their home state of Maryland. To be clear, the Geiers are frequent annual speakers at AutismOne.

Ms. Bernstein was live tweeting the conference. Yes, she has a viewpoint different than the conference organizers. And, she was with Ken Reibel, a journalist who was ejected a few years back for asking a question of Terry Poling (mother of Hannah Poling).

The response by AutismOne?

It apparently takes 3 security guards and 4 police officers to kick me out. Did I mention I did nothing wrong? #antivaxcon

Yep. 3 security guards and 4 police officers.

Why did they stop there? She is obviously a very imposing figure. She’s the one on the left:

OK, they hooked me. I decided to check out the live stream. I joined 39 other people watching Mark Blaxill tell us the same old mercury story.

The hotel security had no comment, but forwarded me to the Lombard police. Lombard police would not comment either.

The message is clear: don’t show up to AutismOne if you aren’t on board with their message. They will not ask you to leave, they will call in the police.

ASF Strongly Supports Combating Autism Reauthorization Act of 2011

27 May

The Combating Autism Act (CAA) “sunsets” this September. That means that the mandate to focus the U.S. government’s research efforts will end. This doesn’t mean that autism research will stop being funded, but it means that the IACC will end, and a commitment to specific funding levels will sunset.

Here is a statement by the Autism Science Foundation on the re-authorization of the CAA:

The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives.

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment. The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC. The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent. This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions. Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law. We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation. At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

Matthew Israel avoids prison – just

25 May

According to the Boston Globe, Matthew Israel will step down from the Judge Rotenberg Center as part of a package to avoid doing jail time.

The founder of the controversial Judge Rotenberg Educational Center is scheduled to face criminal charges in Dedham today arising from a night in 2007 when two special needs teenagers at the center were wrongfully administered dozens of electrical shocks…In a deal reached with the state attorney general’s office, Matthew Israel, 77, is expected to be spared prison time in return for stepping down from the Canton-based center that he founded 40 years ago and accepting a five-year probationary term…The charges against Israel are believed to be related to the destruction of some of the center’s digital surveillance tapes that would have showed what occurred the night of Aug. 26, 2007

Shame. If anyone deserves jail time its Matthew Israel.

iPads for Autism Workshop to Benefit Reach for the Stars Learning Center The Soho Gallery for Digital Art New York, NY

25 May

If you have any interest in iPads as a teaching tool for autistics, you likely have run into the name Shannon Des Roches Rosa. Shannon has written about iPads and how the iPad has been a force for good for her son, Leo. The day after IMFAR, Shannon presented at a workshop in San Diego. I was on my way back home so I missed it, but she writes about it as iPad and Autism Workshops — That Work!. That appears to have been a big success and she is preparing to present again, this time in New York on Sunday, June 5.

Here are some of the information on the workshop and Shannon’s previous efforts on the iPad:

iPads for Autism Workshop to Benefit Reach for the Stars Learning Center The Soho Gallery for Digital Art New York, NY

Autism and iPad advocate Shannon Des Roches Rosa leads this in-depth workshop on the role of iPads for people with autism. Ms. Rosa will demonstrate how iPads can be a dynamic and cost-effective learning tool for autistic children and adults, and will discuss the additional benefits of the iPad as well as fundraising, research, accessories, and – of course – apps.

So if you’re considering an iPad for your loved one with autism, already have an iPad but aren’t sure how best to use it, or just want to talk about all things iPads & autism, this is the workshop for you!

Workshop proceeds benefit Brooklyn’s Reach for the Stars Learning Center, “dedicated to the education of children with autistic spectrum disorders utilizing every possible tool to further their development.”

Event URL: http://www.brownpapertickets.com/event/176035

More workshop information at: http://tinyurl.com/NYCipadAutismWorkshop

Leo’s success with his iPad as profiled in Apple’s iPad: Year One video http://www.youtube.com/watch?v=HpiVeC1Z3yI

Leo’s iPad success detailed in the popular SF Weekly article, iHelp for Autism http://www.sfweekly.com/2010-08-11/news/ihelp-for-autism

Shannon also maintains a spreadsheet of recommended apps for our families http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.htm

Autism vs Symptoms of Autism Part II

25 May

If this is the case it is rather hard to see what we are arguing about. With all the semantic ingenuity in the world children on the autistic spectrum are surely autistic and so are children who have autistic behaviour.

So states John Stone on Age of Autism.

Its meant to point out to us the linguistic convolutions some people go to in order to seperate people who have autism and people who display autistic symptoms. We’re meant to roll our eyes on this stupidity.

But I can’t. Because its not stupid. Because there _is_ a difference between having enough of the symptoms to qualify for a diagnosis of autism and _not_ having enough of the symptoms of autism to qualify for a diagnosis of autism. In one scenario a person has autism as medically defined. In the other scenario, they don’t.

Far from John Stones ‘semantic ingenuity’, what we are in fact talking about is ‘semantic precision’. Lots of people display some of the symptoms of autism yet simply don’t have enough to get a diagnosis. This phenomenom has even got a name: Broader Autism Phenotype. In a paper from as long ago as 1997, the authors states:

Studies of families ascertained through a single autistic proband suggest that the genetic liability for autism may be expressed in nonautistic relatives in a phenotype that is milder but qualitatively similar to the defining features of autism.

Note the use of the word qualitatively there. In that, people with enough symptoms have autism share qualities with those who don’t.

Autism has a long and painful history of being sculpted into a set of beliefs that reflect the position of the believer rather than the objective truth of the matter. The thing is, we _have_ an objective (if medical) truth on the matter, its set down in the DSM or the ICD, pick your poison. John Stone is merely the latest in a long line of people who want autistic people to be ambiguous enough to reflect their beliefs. However, by its very definition, you cannot _be_ autistic (again medically speaking) if you don’t meet the criteria, or even _enough_ of the criteria.

I see nothing of semantic igenuity in this. Stone is, of course, attempting to whip up support for the latest terrible study – this one legal – that claims to have found 83 people compensated for autism via vaccine injury. When you apply John Stone et al’s loose, ambiguous definition of what autism medically is then they’re quite right. Thing is, I suspect I, John Stone and various others could all show _some_ symptoms of autism. Much trickier is to display _enough_ symptoms of autism to be diagnosed as autistic. Something I think about 1% of these 83 were. In other words, no different in amount than the rest of any other population.

David Geier ousted from autism commission

24 May

O’Malley ousts David Geier from autism commission is an article at the Baltimore Sun.

Appointee, who works at father’s practice that offers controversial autism treatment, charged with practicing without a license

Gov. Martin O’Malley removed David A. Geier from Maryland’s Commission on Autism on Friday, telling his one-time appointee in a letter that “you do not at the present time qualify to serve.”

O’Malley told Geier, who has only a bachelor’s degree, that he does not qualify under Maryland law to serve as a “diagnostician,” the title he held on the advisory commission. The governor also cited charges brought against him this week by the Maryland Board of Physicians.

More at the Baltimore Sun, including:

“I regret that you were not willing to withdraw from the Commission and that this action is therefore necessary,” the governor said.

Yes. He was asked to leave. He didn’t. Now he’s being told.

David Geier is part of the father/son team which has promoted the “Lupron protocol” as a therapy for autism. The idea was incredible (as in, not credible) from the start. Their practice appears to have been using false diagnoses of precocious puberty in order to apply Lupron, a drug which shuts down sex hormone production.

Personally, I find it very strange that David Geier was placed on the autism commission to begin with. He clearly lacks expertise or connection to the community (other than financially, of course). This is before one factors in the facts that his entire model of autism is wrong from the word go.

AutismOne, potentially the largest parent-convention promoting the bad science of the Geiers and others starts on the 25th (the day after this post goes live). Mark and David Geier are scheduled to speak. One could hope that AutismOne would pull these speakers. Instead, 2 days ago, they posted a new interview. Complete with the message:

“These top researchers are at the forefront of helping to treat the “Tough Cases”. The symptomology of Precoscious Puberty and its safe treatment for ASD.”

“Top Researcher”

“At the forefront”

“symptomology of precocious puberty”

This is a team that has been charged with serious ethical violations, including the misdiangosis of the “symptomology of precocious puberty”. This is a team which has failed time and again to produce quality research.

But, this is a team which promotes the vaccines-cause-autism hypothesis.

Safety of disable children apparently comes second to ideology for Autism One.

Sorry to have dropped my usual rather dry reporting, but this is just plain wrong. But, these are the people who gave Andrew Wakefield an award after he was found guilty of multiple ethics violations. What can we expect?

Sex and intellectual disability – dealing with sexual health issues.

23 May

Sexual health is a vital but often neglected aspect of healthcare for people with intellectual disability, to quote one of the abstracts below. These appear on what appears to be a special focus issue of the Australian Family Physician on intellectual disabilities. The two papers on sexuality are short but broach a subject that doesn’t come up very much: sexuality amongst the intellectually disabled.

I’ll admit it, whenever I hear someone say that an adult “…is developmentally at about 5 years old” or something to that effect, I cringe a bit. Physically, they are developmentally adults. Adults most often have a drive to seek sex. Beyond that, sex is not always consensual and the intellectually disabled are all to often targets.

I’m not going to go into details about these papers other than to point out that they are out there and I’m glad there is some ongoing dialogue. And, to highlight the concluding paragraph of the first abstract:

Most participants reported unwanted or abusive sexual experiences. They described sequelae such as difficulties with sex and relationships, and anxiety and depression. They described themselves as having inadequate self protection skills and difficulty reporting abuse and obtaining appropriate support. Their understanding of sex was limited and they lacked the literacy and other skills to seek information independently. It is important for general practitioners to be aware of the possibility of sexual abuse against women with intellectual disability, and to offer appropriate interventions.

Here are the two papers (pdf’s online):

Women with intellectual disabilities – a study of sexuality, sexual abuse and protection skills

Sex and intellectual disability – dealing with sexual health issues

and the abstracts:

. Aust Fam Physician. 2011 Apr;40(4):226-30.
Women with intellectual disabilities – a study of sexuality, sexual abuse and protection skills.
Eastgate G, Van Driel ML, Lennox NG, Scheermeyer E.
Source

MBBS, FRACGP, is Senior Lecturer, Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Mater Hospitals, Brisbane, Queensland.
Abstract
BACKGROUND:

Sexual abuse and abusive relationships are known to be especially common in people with intellectual disability. This study explored how women with intellectual disability understand sex, relationships and sexual abuse, the effects of sexual abuse on their lives, and how successfully they protect themselves from abuse.
METHODS:

Semistructured narrative interviews with nine women with mild intellectual disability in Queensland, Australia. Interviews were audio recorded, transcribed, coded and analysed qualitatively.
RESULTS:

Major themes that emerged were: sexual knowledge and sources of knowledge; negotiating sexual relationships; declining unwanted sexual contact; self protection strategies; sexual abuse experiences; and sequelae of sexual abuse.
DISCUSSION:

Most participants reported unwanted or abusive sexual experiences. They described sequelae such as difficulties with sex and relationships, and anxiety and depression. They described themselves as having inadequate self protection skills and difficulty reporting abuse and obtaining appropriate support. Their understanding of sex was limited and they lacked the literacy and other skills to seek information independently. It is important for general practitioners to be aware of the possibility of sexual abuse against women with intellectual disability, and to offer appropriate interventions.

Sex and intellectual disability – dealing with sexual health issues.
Eastgate G.
Source

MBBS, FRACGP, is Senior Lecturer, Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Mater Hospitals, Brisbane, Queensland.
Abstract
BACKGROUND:

Sexual health is a vital but often neglected aspect of healthcare for people with intellectual disability. It may initially be difficult for the general practitioner to raise sexuality issues with patients with intellectual disability, but there is potential for simple interventions that offer great benefit.
OBJECTIVE:

This article describes ways in which the GP may be able to assist people with an intellectual disability with their sexual health needs.
DISCUSSION:

It is important to engage the person with intellectual disability directly, preferably alone. A person with intellectual disability is likely to have the same range of sexual and relationship needs as other adults. However, there may be multiple barriers to forming healthy, equal sexual relationships. Sexual abuse is widespread. Reporting abuse may be difficult for a person with limited verbal skills, and prevention and support services are limited. The GP is well placed to offer sexual health services such as information, contraception and cervical and sexually transmissible infection screening, and to discourage inappropriate treatments such as sterilisation for social rather than medical reasons, and androgen suppression.

Curing autism

23 May

How to discuss this most thorny of subjects without either offending someone or getting it wrong? The answers are that you can’t. I’m going to get this wrong for some and offend others.

Recently, Sullivan posted an update from ASF’s Alison Singer who intimated that ASF were on the search for a cure. I want to say that a) I don’t believe Alison Singer was very well quoted and b) Even if she weren’t, it was still a worrying quote for some.

I don’t think Alison, whom I _have_ forgiven (as if she needed it) for her statements regarding Autism Every Day is – like lots of us, including me – very good at saying the exact right thing at the right time. I doubt she has a team of PR spinners ready to oversee every word and I think that maybe those that _are_ in charge of that PR aren’t on the same wavelength as Alsion Singer.

So much for ASF. What about the dreaded ‘c’ word. I’m on record as saying that autistic people don’t need a cure. I still think that. I still believe that autistic people should be afforded every opportunity and every assistance to be who they are regardless of who others think they should be. I know people – those who believe that life is black and white – take issue with that but I think its perfectly valid to respect those who do not want a hypothetical cure to not partake of that hypothetical cure.

But.

There are those autistic people who _do_ want a hypothetical cure. For those, we are duty bound to look for one. Even if we strongly disagree with their reasons, if we claim to respect the right of people to have differeing neurologies, we cannot _ignore_ the ideas produced by those people. We can disagree with them, debate them, whatever. But we cannot and never should ignore their right to have those ideas. To do so stands against everything that neurodiversity stands for in my opinion. Some things are inconvenient truths. This, to me, is one. My own answer to this inconvenient truth is that I don’t like it. I disagree with it. I will still respect the opinions of those who want it. They posses a validation I cannot – they are just as autistic as my own daughter and I cannot and will not force my own ideas on these people.

So, to me, we – those who do not believe in the necssity of a cure – should be reframing the debate. Instead of saying ‘no cure, not now, not ever’ we should (in my opinion) by saying ‘if there ever is a cure, heres how to use it wisely, without pressure or contrivance’.

I think there will be a cure one day. I think its unavoidable. Science is amoral and will search where it will. It has given us electricity and we built the computer and the electric chair. Morality had no say in the discovery of electricity but it shaped the development of the death penalty and how we moraly share information. I think that how we approach the time that this cure is invented/discovered/developed is vital. We can choose to fight against it and lose or we can choose to help shape it to be a morally responsible idea.

Study by NYU and PACE: another failure in obtaining ethical approval?

20 May

One issue that has come up more than once in autism research is the failure to obtain ethical approval for human studies research. Andrew Wakefield started his studies on autistic children before the Royal Free Hospital granted ethical approval. Mark and David Geier failed to obtain Institutional Review Board (IRB) approval before starting one of their studies. According to an article on neurodiversity.com:

None of the IRB members have declared expertise in the field of pediatric endocrinology. Whereas the IRB was registered in March 2006, the research described in the article was conducted between November 2004 and November 2005.

Not only did none of the members of the IRB have expertise in the field, the IRB included the researchers (Mark and David Geier), the mother of one of the children on the “Lupron protocol”, an attorney specializing in vaccine injury, and Anne Geier (wife to Mark, father to David).

Apparently following in these footsteps are the team who recently brought us a study purporting to show a high prevalence of autism amongst children compensated by the vaccine court (for more on this, see 2 ½ Studies: Autism Prevalence and the “Hidden Horde”). The vaccine-court study author list is Mary Holland, NYU School of Law, Louis Conte, Robert Krakow, and Lisa Colin. The study was published in the PACE Environmental Law Review. Further, “Pace Law School provided significant research support for this study” as noted in the footnotes of the paper:

* Mary Holland, Research Scholar and Director of the Graduate Legal Skills Program, NYU School of Law; Louis Conte, independent investigator; and Robert Krakow and Lisa Colin, attorneys in private practice. Pace Law School provided significant research support for this study. The authors thank former Environmental Law Dean Alexandra Dunn and law students Jillian Petrera, Kyle Caffrey, Sohad Jamal, Alison Kaplan, Georgine Bells, Jonne Ronquillo, Lisa Hatem, Allison Kazi and Adrienne Fortin. The authors also thank volunteers who worked under the direction of Louis Conte. For purposes of disclosure, Robert Krakow and Lisa Colin represent clients and have claims on behalf of family members in the Vaccine Injury Compensation Program.

Ken Reibel, journalist and proprietor of Autism News Beat has an article published today: Unanswered Questions from Pace Law journal study: Ethical Standards for Research on Human Subjects. He poses some very important questions:

1) Does the study methods meet the standards of “human subject” research?
2) Did NYU or PACE (or anyone else) obtain IRB approval?

The answers appear to be yes to the first, no to the second.

From Autism News Beat:

“Human subject” is defined by the DHHS as “a living individual about whom an investigator (whether professional or student) conducting research obtains data through intervention or interaction with the individual, or identifiable private information.”

and,

When asked if the Pace study had IRB approval, Pace Law spokesperson Lauren Rubenstein referred the question to the study’s co-author, Louis Conte. In an email, Rubenstein wrote “Louis Conte has told me that there was no human subjects research in this study.”

Which I interpret to mean that they don’t have IRB approval as they don’t believe they require it. My read is that, yes, they did require IRB approval.

It will be interesting to see what, if anything, comes of this. Will PACE and NYU investigate and let the public know if their people went ahead with human subject research without IRB approval?

For more details: Unanswered Questions from Pace Law journal study: Ethical Standards for Research on Human Subjects

Message From Down syndrome Workers !!!! They’re more than you think

20 May

Here’s a YouTube video someone sent me just now. Really, really tough to watch.