Archive | December, 2008

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.

Parental age is a 'risk factor' for autism

15 Dec

A story today talks about how parental age _may_ be a ‘risk factor’ (loaded phrase much?) for autism. According to the studies lead author (Dr. Maureen Durkin of the University of Wisconsin School of Medicine and Public Health):

What we found was that actually it’s both parents age, and when you control for one parent’s age you still see the effect of the other parent’s age, and vice versa,

….

After the researchers accounted for factors that might influence the results, they found that children born to mothers aged 35 and older were 30 percent more likely than those whose mothers were 25 to 29 years old to have been diagnosed with autism. Having a father who was 40 or older boosted risk by 40 percent.

The study didn’t really look at why this might be but they did do a bit of educated blueskying:

Older parents have had a longer time to sustain genetic damage to their sperm or egg cells, as well as to store up environmental contaminants in their bodies.

They are also more likely to have used assisted reproduction technologies, which have been tied to poor pregnancy outcomes. And there could be something about the behavioral traits or psychological makeup of people who wait to have children that boosts autism risk in their offspring.

Which is all a fancy way of saying: I got nuthin’ so here’s an answer that covers everything. Which is fair enough, it falls totally outside the remit of the paper to answer those questions.

So now you can expect a whole bunch of people to cast aspersions on this study, relating how really they were only 19 when they had an autistic kid and that its all a big conspiracy to detract from the evil vaccines. Whatever.

Its quite an interesting study, the most recent of many that look at (and find a connection) between parental age and autism. Does it move us forward in terms of causation? Nope. Does that really matter? Nope. Its still nice though to see science being done that is just that most important of work – the hog work that starts to fill in the blanks of the most basic facts surrounding an issue. Thanks to this study and those preceding it I think its fair to say now that raised parental age is a factor in autism causation. Not always but sometimes.

Another interesting bit of blueskying:

The findings could also help explain why autism appears to be on the rise in the United States, the researchers added, since the percentage of children who are born to mothers 35 and older and fathers 40 and older has risen steadily since 1980.

I think this is a very interesting hypothesis to follow up on and I hope someone does. But first of all of course we need to establish _if_ autism is ‘on the rise’. Many people will tell you there’s an epidemic of autism but there is in fact no valid evidence to support this supposition. I hope some evidence can be forthcoming. We need it.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.

← Older Entries