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.

Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine

20 May

The father-son team of Mark and David Geier have been charged with violations of medical practice. Mark Geier is a physician and his son, David, holds a bachelor of arts degree. Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine is the most recent post by Kathleen Seidel of Neurodiversity.com. This follows the suspension of Dr. Mark Geier (Maryland Medical Board Suspends Dr. Mark Geier’s License).

Ms. Seidel’s post follows her practice of a very thorough, well linked discussion of the topic. Here is her first paragraph (without links):

On Monday, May 16, 2011, the Maryland Board of Physicians charged Dr. Mark Geier with numerous violations of the Maryland Medical Practice Act, and charged his son, David Geier, with practicing medicine without a license. The charges come three weeks after the Board summarily suspended Dr. Geier’s license to practice medicine, in order to prevent harm to the many autistic children entrusted to his care. The suspension was upheld by a subsequent order issued by the Board on May 12, one day after a hearing at which Dr. Geier protested the suspension and submitted affidavits of support from the parents of seven of his patients. These included a statement from James B. Adams, Ph.D., a professor of engineering at Arizona State University who, like Dr. and Mr. Geier, has frequently exceeded the bounds of his academic specialty to conduct medical research premised on the discredited hypothesis that autism is a consequence of vaccine injury.

It is well worth the time to read the entire post: Maryland Authorities Charge “Lupron Protocol” Promoters With Unprofessional Conduct, Unlicensed Practice of Medicine

Perhaps this time I’ve gone too far….

19 May

OK, it isn’t me that’s gone too far this time. It’s Alison Singer of the Autism Science Foundation. Here’s her message:

What won’t I do to raise money for autism research? This time, I’ll be riding on the back of a motorcycle from Rockville Centre NY to the Montauk Lighthouse with the AML Bikers for Charity, who have chosen to support the Autism Science Foundation with their ride again this year on June 13. Am I scared? In a word, YES!. But not as scared as I am that we are not funding autism research fast enough. Having just returned from the International Meeting for Autism Research, I am more optimistic than ever that we are on our way to finding new treatments and eventually a cure for autism, but there is still a lot of work ahead of us and we need your help.

Please sponsor me as a rider in the AML Bikers for Charity by clicking on this link and then clicking the “donate” button underneath the thermometer. Your support will mean more funds for research that will make a difference for individuals with autism and their families.

The Autism Science Foundation is a 501(c)3 public charity. Donations are tax deductible to the full extent allowed by law. Learn more about ASF at www.autismsciencefoundation.org.

Here’s the donation link again: https://ssl.charityweb.net/autismsciencefoundation/activities/alisonsinger.htm

Want to join the ride? Click here to learn more and register as a biker.

Thank you so much!

Alison

NICHD Brain and Tissue Bank

19 May

Thinking about death is just no fun. Plain and simple. It isn’t fun to plan ahead for a future where you or a loved one is no longer here. Many of us avoid planning for death because it is so hard to think about. But we should face those fears. Depending on your circumstances, you may either be a person being supported, or you may be supporting others. Obviously, some form of financial planning is key, especially within the disability community. Shannon Rosa discussed this topic at The Thinking Person’s Guide to Autism.

But there are other things to think about too. When Eric Courchesne spoke at IMFAR, he started out by noting how there are very, very few sources of postmortem brain tissue. There are really only a few dozen. According to the NICHD (National Center for Child Health and Human Development), here’s what’s in the brain bank:

Autism = 43
Autism-Pending = 10
Autism suspected = 8
Pervasive developmental disorder = 1
Unaffected autism relatives = 3

ASD related:

Rett = 10
Asperger = 4
Angelman = 5
Epilepsy/seizures = 61
Tuberous Sclerosis = 34

That’s it. And this has to serve:

Number of researchers who have received tissue = 72
total autism tissue samples distributed =>1,500
total control tissue samples distributed for autism reearch = >2000
Number of autism papers that utilized NICHD tissue = 82
Number of autism abstracts that utilized NICHD tissue = 103

If you want more information, go to www.btbank.org. There you can register yourself or your minor child as a tissue donor.

OK, it isn’t the way any of us want to contribute to autism science. But just look: there are 43 autism cases available. That’s it. We all know about the diversity of the autism population. 43 is a pitifully small number.

Tissue needs to be collected within 24 hours. Let’s face it, no one wants to have to face the decision of whether to donate a loved one’s tissue in that time of immense grief. Plan ahead. register

Interviews from IMFAR: Alex Plank brings the conference to the public

18 May

One of the unexpected joys of attending the IMFAR conference this year was meeting Alex Plank of Wrong Planet. I plan on writing more about Alex soon, but for the moment, let me bring you some of the interviews he did. His team is the same one that brought us the press conference. That was no small effort. They were up most of the night getting that out so fast. As you will see, Alex takes videography very seriously. As such, I would recommend playing these full screen or going to YouTube and playing them in a larger format that is afforded by out column size. It’s quality work. I love the way he’s working with various locations in these interviews.

John Robison at Imfar

David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

Geraldine Dawson Interview

What I did with your money

18 May

Now LBRB is successfully moved (with a few little bits of tidying needed her and there) I need to tell you what I did with the nearly $1000 so generously donated.

First and foremost of course I bought some new hosting. I think you’ll agree that the site feels much faster and slicker as a result of the move. Gone is the churning away and (hopefully) gone is the CPU throttling.

However, I did have some money left over so I decided that as you all had been so generous that the right thing to do was pay it forward. In that spirit I split the remaining money into three parts and donated thusly:

The Autism Science Foundation – A good deal of LBRB contributors and visitors are American so to donate to a science based autism foundation in the States seemed like a good idea. ASF do not place _any_ research monies into the blind alley of vaccines.

National Autistic Society is the UK’s leading autism charity, giving an actual voice to actual autistic people is vital and the NAS do this better than anyone else in my opinion.

Speur Ghlan are a small, recently incorporated charity based in the land of my fathers – Scotland. I know the founder well and am constantly impressed at her drive and enthusiasm for her subject matter.

The amounts involved were not huge obviously but I hope that I’ve managed to meet with your approval both in choice and reasons for choice.

Thank you once again for your generous donations to get LBRB a better home. I hope I can repay you with years more quality blogging from Sullivan and the odd bit of snark from me 😉

New hosting environment – occassional weirdness

17 May

Hi folks,

Thanks to your extreme kindness, LBRB has been able to move to a much better hosting environment 🙂

However, as we’re moving _right now_ you’re going to see some oddness. Posts are going to disappear as will some comments. Hopefully we’ll be able to reinstate them ASAP but please bear with me whilst I get it all ship shape and bristol fashion.

This is happening now

13 May

In my town, in my county. The same county that has David Cameron amongst its MP’s.

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