Archive | Blogging RSS feed for this section

The Autism Hub

7 May

As many will know, the Autism Hub has been put on hiatus. Many will also know why but if you don’t the reason extends to cyberbullying between a minority of members and their misogynistic attitudes to others on the Hub. The Admin team of the Hub had no choice but to put the Hub on hiatus as I see it.

BUT. I hope this is a temporary hiatus. The world needs a place like the Autism Hub, a place which has transformed itself from its first incarnation when I built it of a blog aggregator of blogs that followed a neurodiversity creed into something much more than that. It became an ideal, a banner which stood in lots of peoples minds – both autistic, NT and other forms of ND – as a force for good if I might be so simplistic. In a web that was covered with material about how awful autism was, it was refreshing to read material that challenged that simplistic view. And whether the blog was written from a standpoint of pure autism advocacy or a standpoint of tackling the antivax arm of autism (and all the flavours in between), refreshing it was and for me refreshing it remained.

One highlight was seeing autistic people and their NT allies presenting material under the banner of the Hub at San Diego University. Thats when I realised how much the Hub had changed beyond my own simplistic view of what it was.

By that time of course I had given up ownership and control of the Hub so the credit for that achievement did not lie with me but with the two current admins. It was they who oversaw the transition of the Hub into a flagship of ideas and I was thrilled to see it happen.

However, more than the admins, the formation of the Hub is made up of its members and they more than anyone dictate what the Hub should be. Sadly this meant for the Hub that some members took advantage of this liberty and thought that meant that in an effort to carve out their own identity it gave them free reign to abuse other Hub members.

And so we’re in the situation we are now where the actions of a few have impacted on something that gave great benefit to many. That abuse has led to a situation where the Hub cannot be administrated effectively without the current Admins effectively becoming full time unpaid administrators. Something that it neither fair nor feasible.

I don’t have any firm and fast idea about what to change or how but I do know that for Hub members, this is – as it ever has been – YOUR hub, powered by you for no ones financial gain and for all of our intellectual and moral gain. To lose it because of the actions of a few people goes beyond a shame and verges on tragedy. Do you really want to leave something – or see this something die – because we cannot deal with rogue members? Now is the time for all of us who are members to have full, frank and open talks about the FUTURE of the Hub, not to lament its golden past. So please – fellow members – lets talk.

Does autistic enterocolitis exist?

20 Apr

The piece below is from the blog justthevax, where it ran as “Independent” the Wakefield way (really something for the fail blog). I like this piece because, frankly, I wish I had done it. Catherina takes a look at the exact claims made by Dr. Wakefield’s supporters and shows that they are clearly false.

“Independent” the Wakefield way (really something for the fail blog).

One of the claims that keeps reappearing in the comments sections under articles covering the GMC ruling on Andrew Wakefield and colleagues is that

The key finding (chronic colitis found in ASD children) of Dr. Wakefield’s early case report published in The Lancet in 1998 HAS been independently confirmed by medical researchers in five different countries.

That is a very significant claim. After all, independent confirmation of a recent finding, would make the validity of a finding more likely, and if 6 independent laboratories found the same gut changes in autistic children, then then likelihood that this was a) a fluke or b) made up by Andrew Wakefield would be drastically reduced.

Finally, one of those commenters has posted those ‘independent confirmations’ – so I thought it might be worth having a look at them.

Krigsman, A. (Assistant Professor of Pediatrics, New York University School of Medicine Director of Gastroenterology Services), et al.,Ileocolonoscopy in Children with Autistic spectrum Disorder and Chronic Gastrointestinal symptoms. Autism Insights 2010:2 1-11.

Gonzalez, L., et al., Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Arch Venez Pueric Pediatr, 2005;69:19-25.

Balzola, F., et al., Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsule enteroscopy: Another piece in the jig-saw of the gut-brain syndrome? American Journal of Gastroenterology, 2005. 100(4): p. 979-981.

Balzola, F., et al., Autistic enterocolitis: Confirmation of a new infammatory bowel disease in an Italian cohort of patients. Gastroenterology 2005;128(Suppl. 2);A-303.

Galiatsatos, P., et al., Autistic enterocolitis: Fact or fiction. Canadian Journal of Gastroenterology. 2009;23:95-98.

Let’s look at number 1, Krigsman et al. The name sounds vaguely familiar. In fact, anyone who has read a little about the MMR-autism affair will know Arthur Krigsman as the clinical director of Thoughtful House, which happens to be the same Texas Clinic out of which Andrew Wakefield practises. One editor of “Autism Insight”, the journal in which this “independent confirmation” was published, is Andrew Wakefield (another one the senior author of the study, Carol Stott). Gosh, I bet peer review was harsh for this one.

Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.

Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.

Similarly, Balzola et al, number 4, is a meeting abstract (if anyone has access, could they email me that abstract, please) that never saw the light of day as a peer reviewed study.

Finally, number 5, Galiatsatos et al., is a case report, featuring two adult patients with gastrointestinal problems and an ASD diagnosis. The authors call for “more investigations” in their discussion.

So what do we have here? Three (3) genuinely published cases of autistic adults who had consulted a doctor for gastrointestinal problems and were found to have gastrointestinal problems. One conference report from April 2005 that has not gone through peer review and has not appeared in a real journal in the 5 years since the conference. One real study looking at over 50 autistic children which does not confirm Wakefield’s findings. And finally, one study by Wakefield’s buddies in a freshly founded journal run by Andrew Wakefield and his buddies, to say that their buddy Andy was really right all along – how is that for “independent” confirmation?!

Cool entry on another blog: Voices of Autism: a “lucky” mother’s perspective

17 Apr

Laura Shumaker is an author and also runs a blog on the San Francisco Chronicle website. I’ll admit, I haven’t read her book, “A regular guy, growing up with autism” yet. But every now and then someone sends me a link to her blog and I’ve liked what I’ve read.

In this piece, Voices of Autism: a “lucky” mother’s perspective, she let’s a guest blogger take the helm, Claire LaZebnik.

Claire talks about the progress her son made, from non-verbal to echolalic to mainstream with support to preparing for college.

It’s a nice piece, and well worth the minute or to to read.

She’s also had a piece in the New York Times, Adolescence, Without a Roadmap which I enjoyed and, I’ll admit, is what prompted me to write this piece linking to her work.

This section caught my eye:

“Hey, Mom?” he says as we’re walking out of a store. “That girl was hot.” He thinks he’s talking in a whisper but he isn’t, really, because he has voice modulation problems and has trouble hearing what his own voice sounds like. The lifeguard in the bikini at the beach is also “hot.” So is Jessica Alba, whose picture he printed and carefully glued onto his binder, next to a photo of Keira Knightley.

The term “hot” may be an affectation he picked up from his friends, but his appreciation of skinny girls with big breasts seems to be genuine, as we realized when we discovered he’d started using the Internet the way other teenage boys are likely to only when they think no one is watching.

We put content filters on our browser software, and his father sat down with him to go over some basic rules: Wait until you’re in love to have sex. Always wear a condom. Hide your pornography where your mother won’t find it. He’ll remember all this because they’re rules, and he’s very good at remembering rules.

Those links again, just in case:

Voices of Autism: a “lucky” mother’s perspective

and

Adolescence, Without a Roadmap

Blogging about IMFAR

12 Apr

INSAR‘s annual International Meeting For Autism Research (IMFAR) is convening in Philadelphia this May (May 20-22).

Thanks in part to a generous travel grant from the Autism Science Foundation, I’ll have the opportunity to attend – and of course I’ll be blogging about it here at LBRB.

For the most part, I plan to write about research, projects, researchers themselves, or talks that I find interesting and attain sufficient understanding, but I’ll also be sharing a little with LBRB readers, about the overall IMFAR experience upon my return. I’m also looking forward to attending the Autism Science Foundation’s “Science and Sandwiches” where plans for this IMFAR lunchtime edition include presentations “from six ASF-funded pre-doctoral students who will describe their new research projects”.

I’ve always been pleasantly surprised by, and appreciative of scientists in general. I’ve had the opportunity to exchange ideas with many over the last few years while writing articles at both LBRB, and Autism Street, and even had the benefit of informal peer review (for some of the more scientifically involved articles) prior to publishing.

If the opportunity arises to meet and talk with individual researchers, I also hope to write some brief “Meet the Researchers” type pieces for those who might be able to take 10 minutes for a few questions. Hopefully this can bring a certain aspect of personal conversation with some of the scientists who’ll attend this year to readers at LBRB.

As more details about the planned presentations (and even posters) become available, be sure to let me know about any you (dear readers) think look particulary interesting. Simply leave a comment, or drop me a note at:

autism blogger at gmail (remove the spaces, and use the symbol for at).

A clarification

7 Apr

The following post was written by a group of LBRB authors

LBRB is produced by team of writers who do not always agree on everything. But we each expect the others to ensure that statements of fact can be corroborated. Mostly this works. But once in while these expectations are not met and one of us is so certain of their opinion that it is presented as fact. This happened recently with a story about Danish scientist Poul Thorsen, who is at the centre of investigations into the disappearance of $2 million in research grants. Because he was one of the authors on two studies that showed no evidence of a vaccine autism link anti-vaccine campaigners at The Age of Autism blog seized on this story as soon as it emerged and argued that Thorsen’s alleged dishonesty regarding the missing funds meant that these studies were tainted.

At the time, coming soon after Wakefield’s disgrace at the GMC and the withdrawal of his now discredited Lancet paper, this seemed a little too convenient. Was the story a fabrication? Were Age of Autism the willing victims of an elaborate hoax? One of our authors thought so and wrote a post which proved to his satisfaction that it was so. A second post by him compounded the error. Both posts were removed (as they were incorrect) and this one https://leftbrainrightbrain.co.uk/2010/03/autism-study-doctor-facing-grant-probe/ stands in their place.

Age of Autism is now trying to use this to attack LBRB founder Kev Leitch, saying he is to blame for allowing the now withdrawn posts to appear in the first place. And the rest of us are guilty by association. We are in good company.

Age of Autism regularly lies about those it sees as opponents. It famously exaggerated Paul Offit’s earnings from the vaccine, Rotateq, stated that he voted for its inclusion in the vaccine schedule and was reprimanded by a congressional committee. All false. None withdrawn.

Another bete noir for AoA is Richard Roy Grinker, whom they regard as an “epidemic denialist.” GRINKER’S STINKER: HIS WIFE RUNS THE IACC was their response to the news that Joyce Chung was the new executive secretary of the Interagency Autism Coordinating Committee. Apparently being married to someone AoA disagrees with makes you open to corruption.

They accused Simon Baron-Cohen of lacking humanity because he wrote about the positive aspects of autism. Eric Fombonne, Catherine Lord and Bennet Leventhal were called parasites because they gave evidence against the vaccine autism connection. They have campaigned against Julie Geberding when she was director of the CDC because, like Simon Baron-Cohen she “lacked humanity” for failing to agree that there was a vaccine induced autism epidemic.

None of these posts have been taken down. No corrections have been published. No apologies have been made. LBRB will continue to make mistakes and when they are pointed out we will correct them. We will continue to allow open debate in the comments to our posts. But we will not be lectured by the anti-vaccine fanatics and autism haters that infest The Age of Autism.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide

Blogger Shannon Rosa on the radio talking about “My Baby Rides the Short Bus”

18 Mar

I just linked to Shannon Rosa’s blog yesterday and here I go again. Her blog, Squidalicious, the adventures of Leelo and his potty mouthed mom, is a good read. She contributed to a new book, “My Baby Rides the Short Bus”.

I haven’t read the book yet. I heard about it a while back but I wasn’t really aware that it came out already. So, I was glad to get the podcast and listen about it. She is joined by Jennifer Byde Myers (who also contributed to the book) and Sarah Talbot (co-editor of the book).

http://www.kqed.org/assets/flash/kqedplayer.swf

The book, My Baby Rides the Short Bus, is available.

Shannon Rosa talks about the facts and myths of the “perfect mom” that many outside the disability community have as an expectation. She talks about the adjustment as her child grows from a young child to an adolescent and how the

To me, Ms. Rosa, Ms. Myers and Ms. Talbot present a good balance in talking about how there are extra difficulties parenting a disabled child.

New LBRB Feature

10 Mar

Never one to rest easy when a new technology becaome popular, I wanted to find a way to harness Twitter to make it appealing to LBRB readers. I think I have now. If you go to https://leftbrainrightbrain.co.uk/tweets/ you’ll see a live updating list of the latest tweets from and about a selection of Tweeters including myself, Liz Ditz, Orac and others. Just leave the page open it’ll update itself as these individuals tweet. If it become popular enough I’ll port it into its own site.

If you tweet about autism and/or science that discusses autism then please contact me and I’ll add you to the list of contributors.

An open letter to Jenny McCarthy

9 Mar

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just _too_ kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for _years_ – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

…

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is _afraid_ of autism recovery Ms McCarthy but I’ll tell you what some of us _are_ afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: _who_ says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like _all_ medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given _about_ the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

…the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

Successful blogging by Steven Novella: the Desiree Jennings story

26 Feb

I stayed away from this story until now. It isn’t about autism at all, except that “Jenny McCarthy and Jim Carrey’s Autism Organization–Generation Rescue” decided to take the story on. Why a supposedly autism organization took on the story of an adult who was supposedly injured by a flu vaccine is not clear to this reader. But, this story shows the power of quality blogging to affect the discussion of a national topic.

Short version of the story: Desiree Jennings was given a seasonal flu vaccine. Sometime after that she developed problems in movement and speech. She attributed these problems to the vaccine, citing dystonia as the condition. This was questioned by some bloggers, including a neurologist, Dr. Steven Novella. As a neurologist, Dr. Novella is experienced in conditions such as dystonia. Ms. Jennings was treated by a well known name in the autism-alternative-medicine community, Dr. Rashid Buttar. The story was given national attention, including a segment on the U.S. TV show Inside Edition.

The whole story of the alleged vaccine injury is long and strange. The current status, it gets even stranger. Ms. Jennings appears to have made a full recovery, walking and driving a car. She talks better, with the addition of a rather strange accent. This was found when Inside Edition decided to do a followup on Ms. Jennings, apparently after reading Dr. Novella’s take on the story. From Dr. Novella’s recent blog post:

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night

One reason to bring this story up now is highlighted by Dr. Novella: the effect of science bloggers on a major news story:

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.

Dr. Novella did well in blogging this story, and Inside Edition did well to reconsider the story in light of the well-reasoned discussion of Dr. Novella.

Video of the recent Inside Edition segment is here:

← Older Entries
Newer Entries →