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Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: “I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try.

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Generation Rescue and Change.Gov

2 Jan

Sometimes you put off a project and it goes stale.  The moment has passed, the project never gets done.  Then again, sometimes you put off a project and it gets more interesting

Such is the case of a comment I saw on Change.Gov. I saw it and thought I’d include it in a future blog post I am considering (let’s see if I write it before it goes stale!). But, instead of missing the window to blog it, enough has happened that it is even more interesting.

Change.Gov is the Obama transition team’s website. In the spirit of open government, they are allowing people to submit questions for review. Other citizens (not only US, by the way) can vote on how important a topic is and, one assumes, the subjects with a lot of votes will get noticed by the transition team.

Given that, I was not surprised to find a question submitted by Generation Rescue’s Kelli Ann Davis. The question is copied below:

“Jenny McCarthy and Jim Carrey were named 2008 Couple of the Year (www.ageofautism.com) due to their advocacy work for Generation Rescue. Why hasn’t the Transistion Team made autism a top priority and sat down with the leaders of this organization?”
Kelli Ann Davis, Reno, Nevada

Since I first saw this, Orac has blogged about it. Not only did he blog it, but he did a very uncharacteristic move: he called for a poll mob ala P.Z. Myers. Yep, Orac got people to log in to Change.Gov and vote on Ms. Davis’ question. Given that one has to actually register before voting, the effect is impressive. At this point, 200 people are voting against Ms. Davis’ comment vs. 137 pro. I don’t recall the numbers from when I first saw it, but I do know that the votes were more “pro” than “con” when I first saw it.

This has not gone unnoticed by the good people at Generation Rescue. Kim Stagliano recycled not only the Age of Autism’s methods (name calling) but recycled an old post by Mark Blaxill as well. Frankly, I am amused. I found the original post by Mr. Blaxill amusing (not in the way he intended, I am sure), and I find it amusing still.

But, that is not enough to really blog about, at least in my book. Rather, I think it is worth taking the time to put in public why I opposed Ms. Davis’ comment.

Go back and read it again. The first thing that strikes this reader is the disingenuous nature of the comment. Jenny McCarthy and Jim Carrey were named couple of the year by the Age of Autism? Huh? I guess if they figure that the Obama (or, as Ms. Davis spelled it for some time, “O’Bama”) team doesn’t know the history of their blog, that might work. However, for those of us who know the Age of Autism as a rebranded “Rescue Post”–the blog of Generation Rescue–it is an odd move, to say the least:

Generation Rescue, which they call “Jenny McCarthy’s Autism Organization” voted Jenny McCarthy and her boyfriend “Couple of the Year”. Were I, a blogger on LeftBrain/RightBrain, to name Kev “LeftBrain/RightBrain’s pick of autism leader of 2008”, would you be impressed? See what I mean?

But, the disingenuous nature of Ms. Davis’ question is just the symptom, not the real problem. Actually, I see two big problems with Ms. Davis’ proposal. (1) It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey. And, (2) No surprise, I am sure, but I find Generation Rescue’s “Couple of the Year” to be highly inappropriate representatives of the “autism community”.

Let’s look a bit closer at these concerns, shall we?

First, keep in mind that Generation Rescue is an organization led by business people and PR people. Even without that, it’s pretty clear that they want to break out into being accepted as a mainstream autism organization. What better way than to say that they are advising the administration on autism issues? As to Jenny McCarthy, is there anyone who doubts that she has been rebranding herself as an autism “activist”?

Still wondering about the self promotion angle? Imagine the talk show circuit next year (and as many years into the future as Jenny McCarthy autism books sell):

“Oh, yes, Oprah, as I was just saying to Barack….”

In addition to Jenny McCarthy potentially cashing in on any meeting, how long before Generation Rescue would be touting themselves as advisers to the administration?

We are talking about the people who grossly inflated the number of people who attended the Green Our Vaccine Rally for effect. I’ve heard estimates of 500 to 1,500 attendees from people who were actually there. GR claims 8,000. If they would do that, they would play a meeting with the Obama team to the hilt.

Keep in mind, these are the people who publish blog posts claiming that HHS Secretary Leavitt stated in public that of course the government knows vaccines cause autism. To back that up, they claimed that someone overheard a conversation outside a church (if I recall correctly). If it were journalism rather than cheap blogging, that would be in the running for irresponsible story of the year. But, instead, it is just an example of the extreme lengths Generation Rescue and their team are willing to go to in order to keep their story alive. What would happen if they were able to talk about closed door meetings with people close to the Obama administration?

Moving on to my second concern: are Jenny McCarthy and Jim Carrey really appropriate as advisers to the transition team? Leave out the obvious questions of the whether people who propagate bad science and, in so doing, are endangering public health. I don’t have the space here to go into what has already been covered so well by Kev on this blog (and many, many others on other blogs, e.g. AutismVox or I Speak of Dreams ). Let’s just say I’d rather have Mr. Obama listening to the sources Mr. Bush used to formulate the decision to go to war with Iraq than listening to Jenny McCarthy on autism.

For example, remember how Jenny McCarthy’s story about her encounter with Barbara Walters changed dramatically between her book version and her interview version? Can we really have someone talking to advisers to the President of the United States and then “remembering” the exchange in whatever way puts her in the best light?

Consider that hypothetical Oprah show quote I had above. Flesh it out:

“Oh, yes, Oprah, as I was just saying to Barack, vaccines caused an epidemic of autism. I could tell he was listening and understood all too well, but I think that even he is afraid to admit the truth in public”.

As to Jim Carrey…well, remember his major stumble at the Green Our Vaccines rally? When asked what vaccines could be left out of the schedule, he said “tetanus”. Seriously, he had just spoken at a rally, but he hadn’t even done the homework as to what his own side thought. Sorry, he isn’t an expert who should be advising the administration, he is still at the level where Generation Rescue people should be being coaching him on what to say. Somehow I am flashing on the stories that have been leaked about coaching sessions with Sara Palin (Africa is a continent?). No, no, no. This is not a man I would want representing me even if I did subscribe to the Generation Rescue story. He just doesn’t have the depth of knowledge to meet the task.

To conclude, let’s answer one of the questions implicitly raised by Kim Stagliano’s blog post–why are people voting against Ms. Davis’ question? My answer: people aren’t voting against Ms. Davis’ question because it’s Kelli Ann Davis. They aren’t voting against it because it is promoting Generation Rescue or Jenny McCarthy (even though those are valid reasons). They aren’t voting against it because Orac told them too. They are voting against it because what Ms. Davis is proposing is a bad idea.

At least, that was my reason.

[Note: I made minor changes in this post shortly after publishing it]

Two new blogs you need to read this new year

31 Dec

You may recall, Dear Reader, that earlier this year Change.org made a big splash when they advertised for an autism blogger for their increasingly popular social action network website. From blogs all over the autism blogosphere, readers and potential authors were urged to apply, apply, apply.

Of course it goes without saying that this was in itself a political act – I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

Age of Autism, with its usual inherent crassness, not only informed their readers of this but also posted the private home phone number of one of the owners of Change.org. As ever, the people on that side of the fence show a startling lack of good social skills for a group that believe genes play a secondary role to vaccines.

Did I apply? Yep. Did I get it? Nope. Am I happy about that? I actually am. I would’ve loved to have carried a neurodiversity message into the heart of the largest growing social action network on the web today but although I made it to the final round, I didn’t make the final hurdle. C’est la vie.

So why am I happy? Because in a burst of what can only be described as genius planning from Change.org they have decided to appoint not one, but _two_ autism bloggers.

So what? I hear you say. Well, so, the first blogger is the truly amazing Kristina Chew. Someone whos blog will be required reading. Someone who is quite firmly on the side of autistic people.

But the absolute best thing is the second blogger. Change.org decided that they would have an autism blogger who was autistic. They settled for Dora Raymaker – an ASAN Director alongside Ari Ne’eman.

This makes Change.org the very first non-autie run political (with a small p) organisation in the US to appoint an autistic person to talk about autism. Think about that. Change.org beat ASA, Autism Speaks etc to appoint an autistic person to express an autistic viewpoint.

I am very excited about these two new autism blogs. I am thrilled that these two people beat off the competition (including me) to take a pro-autistic advocacy message to the heart of this website and this new way of campaigning. Well done Kristina, well done Dora – well done Change.org

Truly, a happy new year for autism advocacy.

NB: Official launch is not until 7th Jan so the blog will be in a state of flux for awhile. Don’t go expecting the finish product. But DO GO and join! Its expected to fully OPERATIONAL however by Jan 2nd.

New MMR and autism study: no correlation

29 Dec

OK so its not the greatest idea to blog about just an abstract but I hope to have more to bring you soon.

This new study states (again) that there’s no correlation between MMR and autism. In fact, the abstract in its entirety reads:

The MMR vaccination coverage in Malopolskie voivodeship improved rapidly and finally reached a high level during last years. The number of new cases of autism spectrum disorders in children during that time revealed a slightly rising but not significant trend, while the number of childhood autism were stable. Ecological study showed no correlation between MMR vaccination and an increased risk of childhood autism and autism spectrum disorders in children.

Clearly they’re using the phrase ‘autism spectrum disorders’ to mean to everything autism related and the phrase ‘childhood autism’ to refer to what the medical community refer to as ‘severe’ or ‘low functioning’ type of autism.

Now, this study is Polish, written in Polish. I have written to the lead author asking if they have, or expect to have, an English translation and if so if I could have a copy.

But still – the message is clear – there is no correlation between autism and MMR. Neither at ‘general’ ASD level, nor at specific ‘severe’ level.

In 2005, The Cochrane Library performed a meta-analysis and systematic review on Vaccines for measles, mumps and rubella in children. Although it had some harsh things to say about the design of studies trying to track adverse events vs fulfilment of role of the vaccine it was also emphatic in its verdict regarding the MMR and autism:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So why am I bringing this back up again? Well, because I want to ensure that I understand the role of the Cochrance Library and I want to explain why the term ‘systematic review’ _matters_ so much. For this, I am indebted, once again, to Ben Goldacre’s truly excellent Bad Science – the book.

A meta-analysis is a very simple thing to do, in some respects: you just collect all the results from all the trials on a given subject, bung them into one big spreadsheet and do the maths on that…

….

So, if there are, say, ten randmoised placebo-controlled trials looking at whether asthma symptoms get better with homoeopathy, each of which has a paltry forty patients, you could put them all into one meta-analysis and effectively (in some respects) have a four-hundred-person trial to work with.

Now, the good thing about meta analysis is that it excludes papers of poor quality. Here’s Ben’s example – with Homeopathy again:

A landmark meta-analysis was published in the Lancet….they found, overall, adding them all up, that homeopathy performs no better than placebo….The homeopaths were up in arms…they will tell you its a stitch up….what [the authors] did, essentially, like all negative meta-analysis of homeopathy was to exclude the poorer quality trials from their analysis.

All quotes, Bad Science, pages 54 to 57.

Sound familiar?

So, back in 2005, a meta-analysis was performed by the Cochrane Library on MMR and one of its results was that:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So – where do we go now? Do we really need to keep on churning out results and studies until every last person on the earth gets the point? Or do we cut our losses, accept that there will always be some idiots who will never get it and…move on….to a research future where we can get back to thinking about autism, how we can help autistic people to live their lives and hopefully a future where children don’t die of vaccine preventable diseases.

Why?

24 Dec

You know me, I will tell you what I think and why I think it. But there is a line. A few lines in fact. These lines shouldn’t be crossed. Do not attack children. Do not make threats of violence.

In the now infamous EoH, doing these things is seen as ‘venting’. So here’s some venting from EoH for you. I think, as a conversation, it encapsulates exactly why these people need dragging out from under their rock and it encapsulates perfectly the bull that they are not anti-vaccine. Of course they are. They are (some of them) regulars on the AoA blog and stalwart supporters of Jenny McCarthy.

Joe Harris:
Look at how far acting civil has gotten us, teen agers and young adults growing old with us
and never living on their own. Until we get loud and start standing up for our kids, they
will always continue to win even though they are child poisoning bastards vaccines are fuxxking EVIL from the pit of hell. I for one am tired of being the nice guy while they poison more children Fuxxk them to hell and If someone sends them there before god doe’s I for one will not shed a tear. Because all they are is child poisoning and killing Bastards lower than Jeffery dahmer at least he had an excuse mental illness what theirs Greed, and thinking they are God. I don’t think they can make a safe vaccine that why McCormick of the vaccine comm. stated one time “Its as safe as a vaccine can be” If you think about that statement It can be taken two ways, another words a vaccine can’t be safe. Again may they all burn in hell. If this was a card game they have nothing they are just good at Bluffing on the other hand we the parents and the courageous researchers would have four aces. I will not apoigise for my anger for my severly autistic son is really stressing me right now.

___

Lisa: thanks, I needed that 🙂 Lisa

____

Lia Costalas:
Hello… Joe.. i agree with what you posted… all the politeness is getting us anywhere.. Lia

____

sammysouthie: Unfortunately Joe we have become an apathetic society of sheep. Gone
are the days of public outrage and standing up for what is right.
Look at what happens when people vote….They complain and then put
the same people back in office. Seems the Pharmies have been having a
tea party…..They are throwing thier crap into the waters but the
public isnt.This is what happens when you have too much being civil.

_____

Lia Costalas: That is sad.. where are the SAM ADAMS???? (my personal favorite historical agitator)… Patrick Henry???? IT MUST BE US. to become agitators. I am tired.. of “meeting” with senators… ect… and in one ear.. out the other… when AIDS was first identified… wow… did society run to find cure.. cause.. treatement… that is all you heard… talk shows went all out.. NO CENSORING… now… we have censoring on autism… larry king shows cancelled… ect.. ect… Lia

_____

Amy W. Osborne: isn’t that what is behind the vaccination anyway? to injure people just enough so that they are preoccupied and docile, follow orders, etc etc?

_____

sammysouthie: —Makes one wonder, doesn’t it

____

Roz: The only ones left standing will be us. Of course, WE will be preoccupied with curing our little “canaries in the coalmine.” Thank God for them, huh? Now we all have learned an invaluable lesson.

_____

Laura Cox: Anger is ok. We all feel exactly the same way you do. I push it aside
because, if I don’t, it will cripple me, being so powerless to change
the status quo overnight. I can protect my son from further harm, but
I cannot protect all of my nieces and nephews from this grievous act
called vaccination. However, we all need to let it out now and then
(anger) and this is a good place to blow off steam. Our thoughts are
with you.

Autism Speaks endorsed by the United Nations

22 Dec

Its no secret that whilst there are many supporters in the US of Autism Speaks, there are equally as many who are not that keen in both the US and the rest of the world.

I’m of the ‘not that keen’ persuasion personally. I think their history of attempting to silence that voices of autistic people in the name of ‘protecting their brand’ is pretty awful. I think their film ‘Autism Every Day’ in which they set out to portray autism as an unrelenting nightmare for parents – to the extent that they appeared to cast a sympathetic eye on the murder of autistic kids – was about as bad and anti-advocacy as it can get.

I think the owners of Autism Speaks – Bob and Suzanne Wright – are ignorant of the needs of that which they seek to build – a true community of autistic people.

I think the fact that no autistic people serve on the board of Autism Speaks makes a mockery of their very name and very aims. How can you be called Autism Speaks when in fact, _no_ autistic people can speak under your regime? Their press release says they want to:

…promote the dignity, equal rights, social progress and better standards of life for individuals with autism…

Really? Here’s an idea. If you want to promote dignity, then treat autistic people with dignity – don’t assume to speak _for_ them. If you want to promote equal rights, then _give_ autistic people equal rights. Give them a position of power within your organisation from which to speak. These are the kinds of things which will _contribute_ to a better standard of life.

I find it incredible that Autism Speaks are so cynically paying lip service to any number of ideals that seem to establish them as a valid autism organisation. I have no idea what their end goal is and I have no real idea why they are going about this in such a way.

However, I want to publicly state that I have no real confidence in the Autism Speaks that the Wrights have control of. I respect the AS stance on science by and large but that is just one aspect. I have no respect for the way the Wrights comport themselves as advocates for autism and I feel strongly that all they do is pay lip service to lofty sounding ideals which will help them get what they want. I think the UN have made a bad choice here and want to bring this matter to the attention of the many of us (biomedders and ND’s – this is one issue we largely agree on) that view AS with suspicion.

Kristina and I wanted to blog

19 Dec

….about our children but as we’ve both had bad experiences with others using the experiences we’ve talked about in the past we decided to set up a private blog, password protected where our family and friends could read and comment in peace without the hurly burly of the autism blogosphere.

Are you welcome? I don’t know – why don’t you ask? You can get me at kevleitch@gmail.com. Or you can get Kristina at her blog. Maybe you want to blog privately about your kids too, or maybe you just want to read.

Being the sibling of an autistic person

19 Dec

A fascinating news story from a week ago I just caught, it tells the side of the story that is often not captured.

Kate Dansereau, 34, of Fairhaven, who has an autistic twin sister, Julie, recalls her story of transcendence. She’s now an autism consultant for Community Autism Resources (CAR), based in Swansea.

“As I got older… and ‘fitting in’ became more important, it was extremely difficult. I was often embarrassed by her and concerned of my own image and what other people would think,” said Dansereau. “After high school there was a shift in my attitude and I became much more accepting of her differences, and felt the rest of the world should be too.”

So, being around an autistic person made this neurotypical person ‘more accepting of difference’. Is there anyone out there who thinks that’s a terrible thing? Because I’m of the opinion that thats an excellent thing. And something that may never have happened to Dansereau had she not had a close relationship to an autistic person. Would it be to much to sugges that possibly (hang tight now folks) this is a clear positive aspect to autism?

How about this?

“When I was about seven, I didn’t really like him [Taylor] very much because I felt like he was mean,” said 13-year-old Jace King, whose 20 -year-old brother, Taylor Cross, is autistic. “My mom explained to me that he was different and that he had some special talents, as well as some things that he wasn’t so great at, and that was because of his autism.”

“At first it didn’t really register, because I was young and didn’t really understand what autism was,” continued King. “As I grew older we had more in common and we liked each other more, and I was able to understand how it affected him and how it made him a better person.”

How it ‘made him a better person’ eh? I wonder if Mr King realises how many people would attack him for simply believing his brothers autism made him a better person?

How about _this_ :

It’s also become common knowledge that over time, as King and Bowers mentioned in their film, siblings tend to mature faster than children who do not have an autistic sibling. They tend to develop more compassionate qualities, and not to be as judgmental of other people.

“I’ve gained a sense of understanding and knowledge,” said King, “When I look at people, instead of asking myself, ‘what’s wrong with them?’ I ask myself, ‘how can I help them?'”

Snyder is also able to reflect on what she has gained from having a sibling on the autism spectrum.

“A lot of my compassionate tendencies really come from the fact that I’ve had my brother my whole life,” said Snyder. “Just from the fact that he’s different and it’s not his fault, and he needs to be accepted, and I try to spread that sentiment when I get the chance.”

So here we are with these siblings of autistic kids – siblings who used to not like their autistic siblings very much as kids – growing up, maturing and developing deeply compassionate qualities as well as losing the judgemental attitudes some people show. They also try to evangelise acceptance.

Seems like siblings of autistic kids turn out pretty damn well to me.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

The mean number of current treatments being used by parents was seven….

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

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