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David Kirby vs Accuracy

20 Jul

As I’ve said before, I like David Kirby personally. We exchange friendly emails. We even recently discussed the idea of having a private blog – readable by all but one that allowed only two posters (David and I) and no commenters. This would, I suggested, give us the opportunity to have a civil debate.

Unfortunately, David was too busy, which was a shame. However, the offers always open should he find a bit more time.

He did have time yesterday to blog a piece for the Huffington Post in which he discussed Amanda Peet and said she was ‘against the medical establishment’ for taking the stance she did. He cited a few things to support his point. I’d like to discuss these things but before I do I’d like you Dear Reader to take note: someone who was at the IACC meeting David talks about (he wasn’t there) will hopefully be posting their account of proceedings on LB/RB.

Anyway. Lets proceed. David’s first piece of rhetoric to support the idea Amanda Peet was against the medical establishment was:

A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

I’m sure that some members do want this. Lynn Redwood and Mark Baxhill to be precise. As the upcoming IACC account will show, I don’t think any other IACC workgroup members were interested. (Please see this correction of an ignorant Limey’s take on the US system.)

I would also like to correct David on his characterisation of the Combating Autism Act. The Act contains no mention of vaccines. It specifies environmental research but the words ‘vaccine’, ‘vaccination’ ‘immunize’, ‘immunization’, ‘mmr’ or ‘thimerosal’ appear nowhere in the CAA. I hope David will correct his HuffPo piece accordingly.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Once again, David’s notes are coming from two people, Lynn Redwood and Mark Blaxill and indeed – they asked for all these things. The account of the meeting I have heard (from someone who was there) differed somewhat. As a flavour of how much the majority of the working group listened to Redwood and Blaxill, I enclose a teaser quote from chairperson Tom Insel:

“Lyn, your community is not the whole community and there are many people with well thought out concerns about ethics of the concept of prevention and if we want to be inclusive we will not do this.”

Back to David:

July 14, 2008 – Rep. Brad Miller (R-NC), Chairman of the House Subcommittee on Investigations and Oversight, (Committe on Science and Technology) writes to HHS Secretary Michael Leavitt to complain that current federal autism research “shows a strong preference to fund genetic-based studies,” even though there is, “growing evidence that suggests a wide range of conditions or environmental exposures may play a role” in autism.

I blogged that episode here. Suffice it to say that a _politician_ is not representative of the medical establishment. I would urge everyone reading this to read that piece as it suggests amongst other things that Generation Rescue and SafeMinds be responsible for a Board that would serve as a liaison between the IACC and parents of autistic people and autistic people themselves!. After reading that I would urge everyone to contact the following people to express your thoughts (politely!) to the decision makers:

HHS Sec Mike Leavitt (mike.leavittAThhs.gov)
NIMH director/IACC director Tom Insel (tinselATmail.nih.gov)
Everyone here: http://science.house.gov/about/members.htm

Once again, back to David:

Dr. Bernadine Healy, former head of the NIH and the American Red Cross and current Health Editor of US News & World Report tells CBS News that, “Officials have been too quick to dismiss the hypothesis as irrational,” and says they “don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”

I still can’t get over the fact that David is using this person to back up his points! He continues to trumpet the opinion of Bernadine Healy who actually did assert that cigarettes do not cause cancer and worked closely with Philip Morris to do so. She also totally reneged on her stance on fetal tissue research when she found herself in the same camp as President Bush. In AoA language she’s a shill.

David then goes on to cite al three Presidential Candidates – as if a politicians opinion in an election year means anything! I definitely fail to see what any of them have to do with being part of the medical establishment.

Onwards:

March 29, 2008 – Dr. Julie Gerberding, Director of the CDC, speaking about the Hannah Poling case on CNN says: “If a child was immunized, got a fever, had other complications from the vaccines, and was pre-disposed with the mitochondrial disorder, it can certainly set off some damage (including) symptoms that have characteristics of autism.”

Er, so? I’m really not sure how this is a ‘point’ for David (or anyone else who thinks its supportive of the idea vaccines cause autism). If she’d said ‘yes, vaccines caused autism in Hannah Poling’s case’ (which no-one ever has by the way, despite statements to the contrary) than _that_ would be a bombshell. As it was Dr. Gerberding was simply speaking what is obvious.

David again:

The CISA Network (Clinical Immunization Safety Assessment), headed by the CDC, receives a report from top researchers at Johns Hopkins University that 30 typically developing children with mitochondrial dysfunction all regressed into autism between 12 and 24 months of life. At least two of them (6%) showed brain damage within one week of receiving simultaneous multiple vaccinations.

Now, I can’t answer this as much as I’d like to. I have spoken to people involved in the preparation and writing of this report (as has David) and I was given two take home points from our email chat:

1) The science is _not yet complete_ . The paper is not published.
2) The authors feel ‘disappointed’ in the slant David has put on their work and are loth to discuss it with anyone else due to that. I was told that David might be rather surprised when everything comes out later in the year.

David once more:

Medical Personnel at HHS concede an autism case filed by the family of Hannah Poling in the federal Vaccine Injury Compensation Program, before the claim can go to trial as a “test case” of the theory that thimerosal causes autism. Though portrayed by some (ie, Dr. Offit) as a legal decision, it is in fact a medical decision. HHS doctors admit that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine-induced fever and immune stimulation that exceeded metabolic reserves,”

First of all, I beg to differ with David. The concession was a legal one. By definition the phrase “autistic encephalopathy” does not exist in mainstream science so if it was used (a fact which has yet to be determined – I invite David once more to link through to the document where this is stated). A simple test of its non-existence is to search for the phrase on PubMed. I got:

Quoted phrase not found.

So we have a multitude of uncertainties here:

1) Nowhere (except in David’s writings) can we find evidence of HHS apparently saying “autistic encephalopathy” caused Hannah Poling’s autism.

2) The phrase itself (“autistic encephalopathy”) does not appear in the entire PubMed database, thus causing me to doubt its use by the medical establishment.

3) Is the concession legal or medical? If a diagnosis does not exist but is used in a legal document then by definition it must be legal – thats my opinion anyway.

David also mentions a HHS Vaccine Safety Working Group meeting but I know next to nothing about that so can’t comment.

I have to say that based on the above, David seems to be attempting nothing more than an intellectual ‘land grab’ i.e. to attempt to paint those who claim vaccines cause autism as part of the medical establishment and those who stand against them as not. Its a good political idea but I don’t think its going to work. There are just too many holes in this particular boat for it to float for long.

Age of Autism get annoyed at Amanda Peet

15 Jul

Remember last week when actress Amanda Peet gave a few people some home truths?

Once we had spoken, I was shocked at the amount of misinformation floating around, particularly in Hollywood,” says Peet, who quickly boned up on the hot-button controversies surrounding the topic, including the unproven link between certain vaccines and autism; the safety of preservatives like mercury-based thimerosal; and the fear that the relatively high number of shots kids receive today can overwhelm young immune systems. Her conclusion? Well, not only is Frankie up-to-date on her vaccines (with no staggering), but her mom will soon appear in public-service announcements for Every Child by Two. “I buy 99 percent organic food for Frankie, and I don’t like to give her medicine or put sunscreen on her,” says Peet. “But now that I’ve done my research, vaccines do not concern me.” What does concern her is the growing number of unvaccinated children who are benefiting from the “shield” created by the inoculated—we are protected from viruses only if everyone, or most everyone, is immunized: “Frankly, I feel that parents who don’t vaccinate their children are parasites.”

Well, today, Age of Autism posted a blog entry that gave full vent to their response:

…you have no idea who you are messing with. You have never seen the power of our numbers, our anger, our commitment, and our conviction. At present, you really have no dog in this fight.

Quite apart from the overtly threatening tone, I would like to remind these people that of _course_ Ms Peet has a ‘dog in this fight’. Everyone does. The collective health of us all clearly affects everyone. Parents who blog on Age of Autism and who blog about Gardasil have ‘no dog in that fight’ according to AoA logic.

The blog post contains one amusing little faux pas:

Ms. Peet’s decision to work with them [CDC] is analogous to the scientists in the 1950s who chose to assert that cigarettes do not cause lung cancer and work closely with Philip Morris to do so…

This is the same blog that continues to trumpet the opinion of Bernadine Healy who actually _did_ assert that cigarettes do not cause cancer and worked closely with Philip Morris to do so. Its either stupidity or a purposeful attempt to obfuscate the truth, I couldn’t possibly say.

The blog post closes with the contact details of Ms Peets advisors, along with the further threat:

…your client has chosen to align herself with him [Paul Offit]. In doing so, Ms. Peet puts herself directly in the line of fire.

If you wish to support Ms Peet’s stance, which I believe is a good one for both public health _and_ which will have a positive impact on autism in terms of moving on from this increasingly desperate and nasty campaign to convince the world vaccines cause autism, then please leave a comment in the comments section of this post, or email me (kevleitchATgmailDOTcom).

I can assure you that unlike the emails that will be sent using the details provided by the AoA blog, your comments will definitely be seen by Ms Peet.

Additional: There’s a nice piece on Amanda Peet and vaccines in Salon.com today.

Six a.m. Morning Walks

12 Jul

Since I was up from four a.m. on Wednesday and looked like a brand new charged battery by quarter to six, mother took me out for a six a.m. morning walk. She hoped I would slow down.
And again on Tuesday, since I was wide -awake from four and had the similar sort of motivation, mother took me out for another six a.m. morning walk.
By Friday I got used to six a.m.
Today, on a Saturday, six a.m. morning walk is an old habit.

Since we are walking everyday at six a.m., I am beginning to form an opinion about it. Six a.m. is getting built up within me as a process that includes the sound of my footsteps on the streets, casual cats sitting in the middle of the streets, mysterious looking trees that seem to hide their staring eyes somewhere in patches of darkness and of course those street lamps that light up certain parts of the street and foot paths in their conservative manners.

The process called six a.m. includes a certain shade of morning that I would never have experienced within the walls of my home. My nostrils breathe in and out the somber silence and the shade of early morning as the light from the eastern sky tries to push away the reluctant dark patches in their silent battle.

It makes me feel defensive about darkness.

The world looks so much simpler without those busy colours and the dynamics of movements that future time of the day would reveal, making the world a vast field of confusion. Perhaps only those cats can understand. Couldn’t the world be one long street with lamp posts on either side?

Six a.m. shows a perfect world where all one needs to do is walk under one lamp post to another wondering what is in the mind of that cat who just moved under one of those last patches of darkness that is still holding up against the morning.

I leave some of my Titoism there for the cat to discover.
–
Tito Rajarshi Mukhopadhyay

Why should I go bumping against people who were jogging?

10 Jul

I am once again thrilled to present LB/RB readers with something from Tito Rajarshi Mukhopadhyay.

Born in India, Tito is a non-verbal autistic person with a considerable talent for writing. His first book is (as I understand it) soon to be followed by a second. Enjoy.

Why should I go bumping against people who were jogging?

“Tito, don’t go that way. You are interrupting the people who are jogging.” I could hear my aide’s voice – loud and clear coming from a very fragile part of the world that I was trying to save at that moment.

I had a responsibility of saving a very scared and fragile world from the load of the sky that was threatening to drop any moment on it, if not for me and my responsible shoulders on which the sky had settled down, while I was walking around the trail.

Since I was feeling very responsible I did have my reasons for not obeying petty commands like, “Tito you need to walk this side of the trail,” or “Tito you need not run into any one jogging across from the other direction!”

The load of sky made me drift to the other side towards them who were coming towards my direction. Balancing the sky is never easy!!!

Since my aide did not see how I was saving the planet, he suspected that I was deliberately trying to block the passage of those serious-body-workers who have goals of sweating profusely so that they can mark the trail with distinguished vapours that evaporate from their individual biological fluids with independent chemical compositions.

Carrying the load of sky is not an easy and anybody’s work. And if people with whom I constantly bumped into had a problem comprehending it, that is not my problem.

Neurodiversity on show

9 Jul

I think I’ve talked before about how the concept of neurodiversity is – as well as being heavily personal – not necessarily something that most people know actually exists as a defined word. What I mean is, some people do things or hold views that are quite obviously neurodiverse but might never have heard of the word or concept.

Googe Alerts sent me a fantastic blog post this morning which was about a story I’d missed due to personal illness. It seems a young autistic girl had gone to a restaurant with her family and were ejected because the girl had a meltdown and another family refused to pay for their meal until the family of the autistic girl were removed.

Renee, the blog owner, makes it clear how repugnant the attitude of both the restaurant (and this intolerant person who demanded the girls family were ejected) were:

Now I will admit that I don’t know much about autism but I do know enough to realize that those that have it deserve the same respect and dignity as anyone else.

I would _love_ it, if that was everyones starting point. How nice would it be to have that attitude as the prevailing one when it comes to autism (or disability in general)?

Thats Neurodiversity right there folks.

Renee, goes on to detail some very intolerant responses to the reported story. They’re nothing that most of us who are either autistic or parents of autistic people have not heard in one shape or other before:

I don’t care if a child is autistic or what, the child needs behaviour modification. In this case, the child should have been removed from the restaurant by a parent until the child calmed down.

Thats someone who doesn’t get it. Thats someone whos probable priority as far as disability goes is not to respect the persons essential difference but to try and ignore it and make sure it does’t inconvenience them.

Thats what Neurodiversity challenges.

I’ll leave the last word to Renee, along with my thanks:

When we refuse to see people who are living with a form of disability whether it be physical, or mental as worthy of sharing our space we are constructing them as less than. It is in this disharmony of worth and value that ‘othering’ occurs. Our ability to project difference onto others leads to dire consequences for those that are unable to fit into a model of what society has accepted as “normal.” Despite the fact that we are individuals and no true norm exists, socially what we expect is conformity to preconceived ideas of what validates personhood.

AAP and Paul Offit under attack (again)

7 Jul

Over on the Age of Autism, a new post has appeared which goes after the AAP (I thought everyone over there was big friends with the AAP these days?), its representative Dr Renee Jenkins and the AAP in general.

They (AoA) appear concerned about the newly formed Immunization Alliance which is an alliance of groups interested in children’s health and threaten that the formation of this group will put the AAP

<blockquote>…..in the middle of the line of fire for parent activism.</blockquote>

We have to question, first and foremost, what this has to do with autism. The answer is of course nothing. But that fast becoming the way with AoA. They posted over 100 posts throughout June and about a third of them were explicitly about autism or touched on autism. There were a lot about the speaking engagements of David Kirby, a lot of posts about the green our vaccines rally, a lot of posts about Gardasil and a lot of anti-AAP etc posts.

You have taken your eyes off the ball guys. You’ve forgotten what this is supposed to be about.

Anyway, the post goes on to say that the AAP announcement is;

<blockquote>Breathtaking in its dismissiveness of parent concerns…</blockquote>

Here’s the article in full:

<blockquote>

Immunization Alliance to develop compelling messages for parents
Anne Hegland
Editor in Chief

With pediatricians facing an increasing number of parents who question the safety of vaccines, representatives from organizations with a shared interest in advancing children’s health met May 30 to compare notes and develop strategies to help recapture public trust in childhood immunizations.

The newly formed Immunization Alliance, representing 15 groups, agreed that together they must work on short-and long-term solutions before falling immunization rates lead to further outbreaks of once-common and sometimes deadly vaccine-preventable childhood diseases.

Fresh in everyone’s mind were the measles outbreaks in nine states earlier this year.

Framing the challenges

Paul Offit, M.D., FAAP, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, identified some of the factors contributing to the increase in vaccine refusal and the need for quick action:

• parents who have never experienced or seen vaccine-preventable diseases;
• media and Internet reports that are unbalanced;
• decreased trust in the government and health care providers;
• an increasing number of states allowing philosophical exemptions; and
• parent-to-parent spread of misinformation.

Dr. Offit pointed out that the majority of vaccine refusals stem from parents’ fears, with only 10% of refusals associated with parents who strongly oppose vaccines.

“We need to work on public messaging around vaccines — the benefit of vaccines — and to have the right messenger delivering those messages,” said AAP President and meeting co-facilitator Renée R. Jenkins, M.D., FAAP.

Underscoring the need for compelling vaccine messages is the No. 1 ranked resolution from the 2008 Annual Leadership Forum, calling for the Academy to lead a coalition that will develop a media campaign on the value of immunizations that can be marketed to parents, added Dr. Jenkins.

The group agreed that communication strategies must appeal to parents who are Internet and media savvy, and go beyond presentation of the science by engaging consumers on an emotional level. There was acknowledgement among attendees that messages from anti-vaccine groups’ helped erode public confidence in immunizations through their use of celebrities to deliver heartrending first-hand accounts.

“The greatest challenge is getting these messages out in a timely fashion. We’ve got August coming up, which is a big month for kids going to the pediatrician for back-to-school visits and for immunizations,” said Dr. Jenkins.

At press time, Alliance members were prioritizing strategies to be shared with communication experts who will help craft messages promoting the value of immunizations.

Messages for pediatricians

Meeting co-facilitator Margaret Fisher, M.D., FAAP, chair of the AAP Section on Infectious Diseases, said the Alliance’s efforts also are an effort to help pediatricians in practice, whose messages have not always been understood by parents.

“We’re all about what’s best for children, and what we’re trying to do is find a way to re-establish our trust with the public. We want to help provide our members with the messages and the method that can regain that trust and make it easier for them on a day-to-day basis.

“The public has lost trust in medicine in general — not in their individual pediatricians,” Dr. Fisher added.

The Immunization Alliance meeting was supported by the Tomorrows Children Endowment of the AAP.

Immunization Alliance

The following groups are represented on the Immunization Alliance:
• American Academy of Family Physicians
• American Academy of Pediatrics
• American College of Obstetricians and Gynecologists
• American Medical Association
• American Public Health Association
• Association of State and Territorial Health Officials
• Easter Seals
• Every Child By Two
• Immunization Action Coalition
• March of Dimes Foundation
• National Foundation for Infectious Diseases
• National Vaccine Program
• Parents of Kids with Infectious Diseases (PKIDS)
• Rotary International
• Voices for Vaccines

</blockquote>

Now maybe its just me but I didn’t see anything there that could be described as ‘breathtaking in its dismissiveness of parent concerns’. In fact, I think the AoA need a little lesson on numbers. You are not the majority, you are not even close. You are however extremely effective at marketing needless fear. But _this_ parents concerns revolve more around the effects of _not_ vaccinating rather than actually vaccinating.

The post goes on to describe how:

<blockquote>The AAP believes the decline in immunization rates is due to “anti-vaccine groups” and “celebrities” as if Jenny and a few websites are the only problem. What they fail to realize is that the message of groups like Generation Rescue would fall flat if there weren’t tens of thousands of parents who agreed with it. 8,000 people don’t march on Washington because of Jenny McCarthy and a few websites, they march on Washington because they know what happened to their child. If parents weren’t hearing our message corroborated in their own communities, there wouldn’t be an impact.</blockquote>

The decline in immunization rates _is_ partly down to ‘anti vaccine groups’ and ‘celebrities’. You pretty much _are_ the only problem. As I said, you are extremely effective at spreading your message. You have the marketing know-how and you have the money to do it. The _way_ parents are hearing your message corroborated is down to your adverts in NYT, down to appearances on Oprah, down to your blogging etc. But what you are doing is winching autism on top of hardcore anti-vaccinationism. People believe you because you have a patina of respectability. They don’t look past the first line appearance and see the multitude of times <a href=”https://leftbrainrightbrain.co.uk/?p=428″>your predictions have been wrong</a>, that your <a href=”https://leftbrainrightbrain.co.uk/?p=820″>hypotheses have failed</a> and the <a href=”https://leftbrainrightbrain.co.uk/?p=602″>threats of violence</a> that you make to those who oppose you.

And lets be honest, even if there were 8,000 people at the ‘green our vaccines’ rally (a figure that is <a href=”https://leftbrainrightbrain.co.uk/?p=856″>very doubtful</a>) then you don’t even come close to representing teh autism community.

According to the latest figures, autism is at a rate of about 1 in 150 (0.6%) of the population. For the US that’s about 1,827,219 autistic people. That’s 3,645,438 parents. As you are believers in autism epidemic (and thus don’t believe autism exists in adults in significant numbers) lets be kind and half that number to take us back down to 1,827,219 parents.

That means that your 8,000 parents totals about 0.4% of the US autism parent community. But lets double the attendees (and oh hell, lets add on 100,000 of people we’ll think of as followers but non-attenders) to make 116,000. That means you now account for 6.4% of autism parent community.

To put it another way, 93.6% of US parents of autistic people either don’t know about you (doubtful in this internet and celeb obsessed age) or simply don’t offer you any credence. And that’s being very, very kind to your numerical position indeed.

AoA go on to claim that:

<blockquote>…there are five major problems with the AAP’s new approach:

1. You can’t defend the assertions

The “fewer antigens” argument has been a Paul Offit special for years. Not only is this argument confusing for parents to understand, it also means nothing. Offit’s claim is based exclusively on the removal of an older Pertussis vaccine (which was causing many problems) decades ago.

What parents see clearly is how many more vaccines they are getting.</blockquote>

This reveals the anti-science beating heart of AoA. A vaccine is just a vehicle for its contents. The antigens argument _is_ the point:

<blockquote>”Of course, most vaccines contain far fewer than 100 antigens (for example, the hepatitis B, diphtheria, and tetanus vaccines each contain 1 antigen), so the estimated number of vaccines to which a child could respond is conservative. But using this estimate, we would predict that if 11 vaccines were given to infants at one time, then about 0.1% of the immune system would be “used up.””</blockquote>

<a href=”http://pediatrics.aappublications.org/cgi/content/full/109/1/124”>Pediatrics</a&gt;

<blockquote>

2. The news is making them look very stupid

With the Hannah Poling case, Dr. Bernadine Healy’s recent comments, the potential for an Omnibus decision going our way, Julie Gerberding retreating, the IOM revisiting the “environment’s” role in autism, and the case reports of children falling into autism after vaccines continuing to roll in</blockquote>

The Hannah Poling case? Please demonstrate where that showed that vaccines cause or contribute to autism. Bernadine Healy was at one time (and maybe still is, I don’t know) <a href=”https://leftbrainrightbrain.co.uk/?p=846″>a tobacco company shill</a>. Gerderding and the IOM are indeed revisiting the ‘environmental’ roles in autism. What’s that got to do with vaccines? And what case reports of children falling into autism are we talking about?

This is what I meant about a patina of respectability. On the surface, it sounds, _great_ – plausible – to the untrained eye. However, a quick peek beneath the surface and it starts to shake apart.

<blockquote>

4. They are not dealing honestly with parent concerns

If you have no safety studies verifying the issue of combination risk of so many vaccines, defending the schedule in its current form will backfire on you. If your best defense is to cite the 600 deaths a year from HIB now being prevented, parents will compare this to the 1 in 150 risk or higher of autism and make their own conclusions. By not acknowledging that the risk-reward of vaccines is potentially wildly out of balance, parents will not listen to you.</blockquote>

Are you seriously suggesting that people will be more worried about autism than _death_ ???

And, as I’ve demonstrated, I don’t think that organisations that speak to less than one percent of autism parents can really claim to have their pulse on what autism parents really care about.

The last one is ‘Offit is a time bomb’. I’m not really sure what the point there is.

An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

Blog housekeeping

5 Jul

First off, my thanks to Sullivan for keeping the wheels on the blog turning for the last couple of weeks. I’ve been unwell and not felt capable of writing more than fairly basic posts. I’m starting to feel better now so hopefully I’ll be back and fighting fit soon.

Secondly, if you cast your eyes to the right you’ll see a ‘Zazzle Gallery’. This is a gallery of products I’ve done (Zazzle is a better version of Cafepress). The reason I’ve done them is two-fold. First off, its quite fun to poke a bit of satire in the direction of certain people (the t-shirts have print on the back as well). Secondly, its getting towards that time of year again – the time of year when I need to start thinking about paying for the site and I thought this would give another option rather than simply asking people to donate to site costs.

Thirdly, if you cast your eyes downwards, you’ll see the video section. I’ve had it on place for a few weeks now and (duh) only just realised that I make money from it. So far, I’ve apparently made the princely sum of $3. However thats not the point, I want to apologise to anyone who clicked a video without realising that they sent me a few pence every time they did. I should’ve noticed this earlier.

Fourthly, I want to thank everyone who participates in the weekly polls. I have to say that they are fascinating (seems like Autism Speaks need a good PR person!).

LB/RB has changed beyond all recognition in the five years since it started. The subject matter has changed from the personal portfolio page of a jobbing web developer to a two-fold website comprised of a web development/autism blog and a tutorial site for standards based web development to a blog about my autistic child to a multi-author blog about autism news, science and opinion. When it shut last year and then re-opened again I envisaged a long period of quiet as all the people who used to comment would’ve moved on but that turns out not to be the case. My daily visitor stats are a little down (I now have about 3,500 unique visitors a day as oppose to nearly a thousand more than that this time last year) but the comment section of each post is now a haven of discussion and debate rather than endless ranting and flame wars. The commenting absence of certain people (but they still read, I can see their IP in my logs 🙂 ) has created a much easier to manage site.

So, thank you loyal readers, thank you new readers – here’s to another 5 years!

I hope to hear from Tito soon…

4 Jul

I got a bit spoiled with the grey matter/white matter blog (gmwm.autistics.org). Not because it gave me a forum to explore my own ideas, but because it gave me a place to read more by Tito Rajarshi Mukhopadhyay.

Tito guest blogged a piece here on LeftBrain/RightBrain.

I miss reading Titoisms. I could use some crosseyed invisible kangaroos. I could use his uplifting statements.

I hope all is well with Tito. Tito, if you read this, know that I’d love to see something from you. I bet there are others who feel the same as well.

Autism Hub at USD and on NPR

25 Jun

Under the care of Dave Seidel and HollywoodJaded, the Autism Hub has gone from strength to strength. They are to be massively congratulated for all that the Hub has become.

However, two other people have driven the Hub into new areas this past year. These two people have demonstrated both singly and jointly exactly the ethos I hoped the Hub would have. Parents and autistic people speaking together.

One of the key areas Steve and Bev have worked in is getting the Hub to an academic audience and a public audience. Steve has worked tirelessly to arrange not one, but two Autism Hub based presentations to an academic audience. I’ve blogged it already but the University of San Diego is currently holding a conference at which Autism Hub bloggers are taking a large part.

Autism Hub at USD

Also on this issue, Steve and Bev appeared on National Public Radio station KPBS show ‘These Days’ to talk about the USD conference and the Autism Hub.

You can listen to the show in MP3 format. Bev and Steve do a fantastic job and it was great to hear the personification of the main idea behind the Hub (that of autistic person and parent to autistic people speaking together).

I wanted to offer a hearttfelt thank you to Steve and Bev for doing all that they have. It really does matter and it really is important. Thank you.

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