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PaulOffit.com, a tempest in a teapot

28 May

A month or so back, I stepped forward to state that I, Matt Carey, have been posting as Sullivan here on Left Brain/Right Brain. Mr. J.B. Handley of the Age of Autism blog and Generation Rescue had made a commitment to transfer the domain pauloffit.com and to stop commenting on Dr. Offit should it be demonstrated that Sullivan was not Bonnie Offit, wife of Paul Offit.

The domain was not transferred until yesterday. In the time that has transpired, tempers have raised. The last comment in the string below should be taken as a sign of the frustration level and not as an opening for critique, in my opinion. I considered leaving it out for that reason.

I generally do not like to post emails. However, as Mr. Handley has already posted some of these exchanges, I feel that it is appropriate to post the full exchange at this time. Here are the emails which I have found in my inbox. If any are missing, I feel sure that will be brought to my attention and I will add them. I do not have access to the emails or other communications between Mr. Handley or his agent and the domain registration company register.com. I can’t tell if the request to email Dr. Offit was made or not. I can’t tell if register.com bungled the communication. I just don’t have that data.

At one place on the web (at least) I commented that Mr. Handley emailed me first. That he did not do. He made the offer to complete the deal on his blog.

April 29:

Matt:I’ll take care of it early next week, thanks for the guidance.

On a separate note, I wanted to ask you to submit to an interview via email for publication at AoA. I will generate the questions, you answer them, and I publish them in totality without editorializing. The topics will exclusively cover the science of autism, known and unknown, and include prevalence, vaccines, and medical issues.

My reason for asking is that you are really the first well-educated parent (although Harvey Mudd is no Stanford 🙂 I have encountered on the other side of this topic who doesn’t seem to be a nut job (Kevin Leitch, Autism Diva, etc.).

I honestly do not understand how you have looked at the same published research I have looked at and concluded that vaccines have been exonerated from causing a majority of today’s autism. I really, truly do believe that the large-scale epidemiological studies that are constantly cited as “proof” are garbage, have yet to ask the right questions, and are typically managed to produce a previously determined outcome. I believe Allison ISnger and Paul Offit consistently and knowingly misrepresent what has been studied in public statements, and it really drives me nuts.

As a Ph.D. scientist, I think your answers will be thought-provoking. I’d like to ask you pointed questions and let you answer them. Your writing has shown me you aren’t a spin doctor and will answer things like a scientist, not a partisan. Despite my delight in provoking people I consider to be idiots (Orac), I actually do enjoy debating this issue, because my only genuine interest in all this is helping my son. If it really wasn’t the antibiotics and vaccines that got him, I’m wasting a hell of a lot of time and money treating the wrong things.

My request for the interview has nothing to do with Offit’s website, so no conditions here, I just hope you’ll consider the interview for its own sake. There are a lot of extremely smart parents on our side of the table, and I’d like to see the different reactions a thorough and measured interview with an “opposition figure” brings.

Ball is in your court,

JB Handley

On Apr 29, 2011, at 2:36 PM, Matt Carey wrote:Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

Matt Carey

May 2nd:

Are you going to take 5 months to respond again?JB Handley

May 5th:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JBJB Handley

May 13th: I added this comment to the blog post:

He replied that he would “take care of it early next week”That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

May 13th:

Matt:The site was offered to Paul Offit. It was also unlocked. After 3 days, apparently no one had claimed it, at which point anyone could. I can’t make Offit take it, maybe he didn’t so you guys could say I re-traded. Whatever, I did my part. Offit could confirm he received an email offering it to him. Don’t bother writing back, I have conceded I was wrong, and honored my end of the deal, JB

My email to owner of domain:

On Mon, May 2, 2011 at 10:23 PM, JB Handley <[redacted]> wrote:

Hey

– Give the site back to Paul Offit, or at least give him the right to register the domain name. Can you do that?Please email the right to the domain to: offit@email.chop.edu

It’s a long story, but basically I lost a bet. JB

From: [redacted]
To: JB Handley <[redacted]>
Subject: Re: Do you have anytime in the next few days?
Date: May 3, 2011 9:32:08 AM PDT
Hi JB -Step 1 of 3 is done:

The http://www.pauloffit.com site has been updated.

The domain is unlocked and anyone can request a transfer. Once that request is submitted, you’ll get an email at “[redacted]” to confirm that transfer. Additionally, I used Register.com’s transfer process, using the “chop.edu” email address below that you gave me.

– [redacted]

JB Handley

May 14th (comment posted on a few blogs, including here)

Todd:Dr. Offit is lying, as usual. On may 3rd, Dr. Offit received an email from register.com offering the transfer of the site to him. After 72 hours, Dr. Offit had not claimed it and the site was available to anyone to register. The email where the register.com transfer was sent was provided to me by Matt Carey, who directed me here to find it:

I even sent Mr. Carey a note on May 6th advising him of that and offering to interview him for AoA, in the spirit of closing the gap between us, to which he has never responded, here’s the contents of that email:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JB

Someone is lying to you, JB Handley

May 15th:

Matt:Below is completed transfer. I sent Offit first notice on May 3rd, 12 days ago – FUCK YOU for publicly saying I didn’t!!

“After Mr. Handley emailed me I replied that he could transfer the domain directly to the Offits. He never contacted them.”

When I say I am going to do something, I do it.

And, you don’t even have the courtesy to respond to my emails or interview request. Man up,

JB Handley

Begin forwarded message:From: “J.B. Handley” <[redacted]>
Date: May 15, 2011 6:02:29 PM PDT
To: “’[redacted]’” <[redacted]>
Subject: FW: Register.com – Transfer of Registrant is completed

J.B. Handley
——-Original Message——-
From: support@register.com [mailto:support@register.com]
Sent: Sunday, May 15, 2011 1:01 PM
To: J.B. Handley
Subject: Register.com – Transfer of Registrant is completed

Dear Valued Customer,

This email serves as a notification that the Transfer of Registrant for pauloffit.com from JB Handley to Paul Offit has been confirmed and processed successfully. Please note that the services associated with the domain are not transferable when a Transfer of Registrant takes place, any service previously in place for the domain must be repurchased if you wish for it to be reinstated.

If you have any further questions about this process and wish to consult with a Customer Service Representative you can contact us 24 hours a day, 7 days a week, by submitting a request online at http://help.register.com/cgi-bin/register_help.cfg/php/enduser/ask.php or by contacting one of the numbers below.

Thank you for choosing Register.com.

Note that this last email was sent just yesterday. The previous one was sent Friday. I was at IMFAR then, and have been either at the conference, traveling, or getting caught up at work since.

I can be pedantic and stand by my statement on May 13th: Did Mr. Handley contact Dr. Offit in early May? No. Are there other inconsistencies in the above set of exchanges? Yes. Is there value in stressing that point? No.

Mr. Handley chose a third person, who chose register.com to contact Dr. Offit. Is it possible that Mr. Handley and whoever was running pauloffit.com are not aware of that “unlocked” doesn’t have to mean “available for anyone to register”? There should be a key to effect the transfer. There’s a lot of chance there for the ball to be dropped. Neither Mr. Handley nor myself has access to Paul Offit’s email to confirm what did or did not get through. We can say that Dr. Offit has commented that he was not contacted. Given his interest in obtaining this domain, I don’t see the need to question that he would have acted on an email if it came.

I think many people, myself included, thought that a third person had grabbed the domain and that it was lost. At one point I did try to check on the registration status of the site, and I found that it was not available. If it did stay in Mr. Handley’s (or his agent’s) possession this whole time, it strikes me odd (to say the least) that the site was redesigned given the commitment that Mr. Handley made to stop commenting about Dr. Offit.

Earlier today I participated in a chat session with someone at register.com. I was still a bit confused about everything, so I would ask better questions if I had another opportunity. For one thing, I was under the impression that the site had been transferred to someone other than Mr. Handley (or his agent) and Dr. Offit. Here is that exchange:

Rob A.: Hi, my name is Rob A.. How may I help you?
Matt Carey: I’m looking for information about how register.com transfers domains
Matt Carey: I was involved in a recent transfer. The original owner of the domain set up the transfer by email with your team, who contacted the person to receive the domain. When no response was received by register, the domain was unlocked and someone else took the domain.
Matt Carey: Is this standard practice with Domain? It seems odd that the domain would be just unlocked
Rob A.: Could I get the dom,ain name in question pelase?
Matt Carey: Here is what I was told: the recipient “…received an email from register.com offering the transfer of the site to him. After 72 hours, [the recipient] had not claimed it and the site was available to anyone to register. ”
Matt Carey: pauloffit.com
Rob A.: Thank you
Matt Carey: The domain is now, finally, been transferred to the correct person. But originally, we were told that the domain had been unlocked and transferred to a third party.
Rob A.: I see that the transfer was successful from one account to the other
Rob A.: That may have been send in error as I do not see that in our system
Rob A.: Sorry
Matt Carey: Is it the policy of Register.com to simply unlock a domain after 72 hours?
Rob A.: no.
Matt Carey: Is it possible to tell me if a third party did posses the domain for a short period? Someone other than Mr. Handley (the original owner) and Dr. Offit, the current owner?
Rob A.: Not according to our system
Rob A.: It went from one account to the other
Matt Carey: Thank you very much for your time.
Rob A.: Thank you for visiting Register.com – Don’t just make a website – Make an Impact!
Rob A. has disconnected.

Are Mr. Handley’s statements accurate? No. For one thing, the site was not left open for anyone to register. Is that a lie? Not in my book. Let’s just say that Mr. Handley and his agent didn’t understand how domain registration transfers work. I certainly didn’t a few days ago.

Mr Handley stated on his blog: “I kept a screen shot of the confirmation of emails sent from register.com.” He has not shared those with me.

Mr. Handley is correct that I should have responded to his request for an interview. For that, I do apologize. I could brush it off as being due to Mr. Handley’s demeanor which, frankly, I do not care for. However, that would be blameshifting. Crafting a response was not straightforward as it may seem. I try to keep the exchanges respectful, if sometimes critical. Given that this is overdue, let me post my response here:

Mr. Handley,I appreciate your offer of an interview with your blog. I believe that in my many posts I have made my positions quite clear. It is very difficult to craft a response that would not come across as a slam. Suffice it to say, I would not willingly add my name to the Age of Autism blog. If at some point in the future, the focus of the Age of Autism were to shift to one which actually advances the needs of children like mine, and the adults whom I see as allies, I would be happy to consent to an interview. Until that time, I consider this matter closed.

Matt Carey

To respond to the obvious criticism: I have still not responded to Mr. Handley by email. I leave it up to you, the reader, to tell me if you would respond to the emails of the tone above. I feel quite comfortable with my decision.

This response by Mr. Handley puts a major damper on the optimism I felt coming from IMFAR. I spent a lot of time with people, a few of whom are on “the other side of the fence”. It was very refreshing to sit down with people, disagree and still feel kinship for those people. There was at least one person whom I wish I had approached and spoken to, if only to express the fact that I hold that person in high regard, even though we have disagreed. But, on the whole, I came away with something I didn’t expect: a sense of hope. It isn’t about people agreeing. It’s about people of differing opinions working as allies. It is also about accepting the science. Accepting the facts as they come in. It’s also about not causing harm to the autism communities and to public health.

Note: this article originally ran on May 17th. In our transition to a new hosting service, the post was lost. I’ve copied it over from the Google Cache version.

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.

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

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