Archive | May, 2011

Autism and autism – two shades of the same thing

30 May

I’m quite lucky really. Once my ex and I separated I started seeing someone else. This other person also has a child with autism. Now that we live together I have experience of two shades of autism.

My own child has profound learning difficulties as well as autism. My step child’s issues are more to do with sociability and her environment. My own child attends what is known in the UK as a Special School. My step child is in a mainstream setting. It is felt by all sets of parents that both children are very much in the right environment.

As a result of this exposure to two shades of autism, my own views of what autism is have altered a little in some ways and in others, become more firmly held. The way they have altered is that I am now, as noted by some, more amenable to seeing autism as one more thing than a difference and a disability – it _is_ also a medical issue. What do I mean by that? Well, for example, my step child has a different set of issues under the terms of the DSM IV (and the DSM V) as my own child. However they are both still fully and diagnostically autistic. Before, I would’ve simply accepted this as ONLY a different shade of the same thing. Now, I see it as a difference which is medically diagnosable and also disabling in some ways and very enabling in others (my step child is a maths whiz, far far ahead of her NT peers).

In what ways have my views on autism become more entrenched? Well, being responsible for two children on the spectrum who are markedly different from each other in diagnostic issues might have led me to doubt autism as a valid diagnosis at all but it is the similarities they both have with each other that leads me to believe that I am right to consider autism as something more than _just_ a disability. Is it a disability at all? Yes. Autism has disabled both my child and step-child. Is it a difference? Yes it is. These two kids are different in positive ways.

There are people who take me to task for suggesting that I don’t believe autism _must_ be cured. Thats fine, they’re entitled to their opinions. I would suggest however that they haven’t considered the shades of grey that exist between two people with autism, let alone the whole huge spectrum of differences that must exist.

They also take me to task saying that, if a cure ever existed I wouldn’t cure my child unless she asked me too. They take the literal view that because my child is non-verbal she can’t ask, therefore I am denying that cure. There are of course a multitude of issues with that stance. First is the face that kids – even (shock) autistic kids – develop over time. Just because my child is non-verbal _now_ doesn’t mean that my child will _always_ be non-verbal. Second is that fact that non-verbal doesn’t mean non-communicative (See Carly’s Voice for a prime example). Third is the face that my child’s autism is not the greatest challenge xe faces. That challenge is her learning difficulty (intellectual disability in North America). I could remove autism tomorrow and still my child would be profoundly affected by a disability.

Things are never cut and dried. Black and white. The answers to a lot of issues (not all) lies somewhere in the middle. For those who immaturely expect their to be AN answer, good luck to you. I hope you find your answer. Don’t however, think that your answer is THE answer. I have no idea who said the following but I think its spot on: “follow the man who seeks answers, flee from the man who has found them.”

College students on the autism spectrum: Prevalence and associated problems

29 May

A recent study by a team at Virginia Polytechnic Institute and State University has investigated the prevalence of autism within a university population. The paper, College students on the autism spectrum: Prevalence and associated problems, found a groups of students who met the diagnositic criteria for autism but were previously undiagnosed.

Here is the abstract:

As more young people are identified with autism spectrum diagnoses without co-occurring intellectual disability (i.e. high-functioning autism spectrum disorder; HFASD), it is imperative that we begin to study the needs of this population. We sought to gain a preliminary estimate of the scope of the problem and to examine psychiatric risks associated HFASD symptoms in university students. In a large sample (n = 667), we examined prevalence of ASD in students at a single university both diagnostically and dimensionally, and surveyed students on other behavioral and psychiatric problems. Dependent upon the ascertainment method, between .7 per cent and 1.9 per cent of college students could meet criteria for HFASD. Of special interest, none of the students who were found to meet diagnostic criteria (n = 5) formally for HFASD in this study had been previously diagnosed. From a dimensional perspective, those students scoring above the clinical threshold for symptoms of autism (n = 13) self-reported more problems with social anxiety than a matched comparison group of students with lower autism severity scores. In addition, symptoms of HFASD were significantly correlated with symptoms of social anxiety, as well as depression and aggression. Findings demonstrate the importance of screening for autism-related impairment among university student

Repeated for emphasis: “Of special interest, none of the students who were found to meet diagnostic criteria (n = 5) formally for HFASD in this study had been previously diagnosed.”

We have had much discussion here lately as to whether “symptoms of autism” equate to autism. If this is the case, the prevalence of autism amongst college students is on the high side of the Virginia Tech team’s estimates.

“From a dimensional perspective, those students scoring above the clinical threshold for symptoms of autism (n = 13) self-reported more problems with social anxiety than a matched comparison group of students with lower autism severity scores.”

Why are some autism groups silent on the Combating Autism Reauthorization Act?

29 May

Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation, ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,

The Autistic Self Advocacy Network

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.

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.

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