Archive | 2006

McScience

3 Mar

Yesterday, my fellow countryman Mike Stanton left the following comment in response to a previous commenter about his belief regarding how his child had become autistic:

There may not be a single answer. But that does not mean we can pick any answer we like. There has to be some scientific validity to any hypothesis.

This is such a good comment. It reflects something I’ve felt increasingly over the last year or so – the increase in pseudo-scientific theories posed as a ‘menu’ for parents to choose from. It reminds me of sauntering up to the counter at McDonalds and saying – “I’ll have one of those, one of those and one of those.”

I recently came across a post made on the Onibasu list which illustrates my point. This is the signature of the poster in question. Its a list of treatments she’s trying on her child:

My son is using M-B12 (Hopewell) since Dec 2003, Wellness Essential GSH (had been using TD-Glut but levels were always low), TD-DMSA (3 on and 4 off – 8 hr schedule) (Lee Silsby) since Oct 2005, (Used TD-DMPS Jan 2005 ?Oct 2005) TD-ALA (Lee Silsby) since Oct 2005, TD-LDN (Wellness) Since Oct 2005, (High Tech Health) FIR sauna, Magnetico bed, High Tech Health’s water machine, and a lot of supplements.) GFGFSF diet.

The post in question is also asking about Lupron. Thats a total of 12 separate treatments, ‘a lot of’ supplements and she probably is in the process of adding Lupron to that list as we speak.

And can you Supersize me please?

What worries me is even a bog-standard bottle of Asprin has a warning on it about responsible use. Is it really sensible to risk giving one’s child such a massive cocktail of drugs on the word of someone who quite obviously is more interested in money than science?

Medicine shouldn’t be such a pick and mix affair. Its quite worrying about what this reveals about how the West’s perception of doctors has changed. Doctors who have undergone 7 years plus of training are viewed with suspicion and sued at the drop of an opinion whilst ‘doctors’ who have shops rather than practices are lauded as heroes.

How did it come to this? When did McScience start to replace science? How did it come to pass that the process of peer review (designed to give a good _starting point_ to a paper) meant nothing and the process of buying an entry in a pseudoscience rag or buying a misleading advertmeant everything?

I’m nobodies scientist. It takes me longer to understand the science because I need to go through it time after time so I understand all the words and understand the implications. I ask questions of actual scientists and get them to translate for me so it stands to reason to me that for an article to be peer reviewed in a decent journal assures that the standard of science in that article will be fairly high. It might not make the paper _right_ , but at least we can be sure its been thought through properly.

Surely that needs to be the absolute baseline of quality we should come to expect for papers that discuss such important questions. Otherwise we really do end up at the counter of McScience – like kids in a sweet shop, taking what we think we’ll like rather than what we need.

The Path Of Most Resistance

2 Mar

I’ve read a couple of posts today, both from people I respect a lot, that really made me stop and think about the nature of my own blogging and what I’m doing.

The first was a post from Susan in which she talked about the Autism Club:

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.

I am conflicted about this. Let me explain – I think Susan is a great role model for parents of autistic kids and I think in the broader implications of what she says here (and I urge you to follow the link and read the whole piece) she’s spot on – we _should_ all be working together. However, in the three plus years I’ve been blogging about autism I’ve grown more and more saddened by the realisation that this doesn’t seem to be possible. I used to want to provide gentle example but as time progresses and viewpoints become more entrenched I find myself firing off a volley rather than providing calm reflection.

My problem is this: there are people ‘out there’ who want to make money or prestige from autism. There are other people who seem to genuinely hate autistics and the whole idea of autism – some of these people are parents. Some are grandparents, some are friends, brothers, cousins. Some are autistic themselves.

I cannot seem to find a way within myself to accept that these people merely have a differing opinion than mine. Different opinions are for things like what taste in music someone has. The things this group of people espouse revolve around the viewpoint of autism being something abhorrent. I find myself unable to let the things they say go unaddressed.

I _want_ to be able to say that it doesn’t matter so ‘each to their own’. But it does matter to me. It matter when people start using utterly untested treatments. It matters when children die. It matters when adults are dismissed for the ludicrous viewpoint that because they can talk or type they have no insight. It matters that science is hijacked by ignorance.

None of this is to have a go at Susan who as I say I respect deeply. I know she feels these things deeply too. Her post merely helped coalesce my thoughts.

The second post I read was from Estee who talked today about the lonliness, struggle and profound joy of parenting an autistic child. Its a great title and a great post, just like Susan’s. Estee says:

Some people take these debates, points of view, so personally (a hazard of religion as it involves so much emotion), that I have discovered a very dark side of autism. I discovered that parents with autistic children are so divided that the support I was seeking is hard to find. Instead of a journey to discovery, it is starting to look more like a war out there.

Depressingly true.

When I first started blogging about autism I have the distinct impression I was pretty much alone. I’m someone who makes their living from the web so I know how to tweak the technology to find things. I didn’t find anybody. I determined that in order to raise the wall of societal ignorance about autism I would talk about Megan. I would document our lives – the loneliness, the struggles and the profound joys as Estee describes it.

Somewhere along the line, as our family increasingly realised more about Megan and about autism and as we read more and more from autistic people themselves our views about things changed. I started to realise to my horror that there was a whole subculture ‘out there’ that wanted nothing less than the total eradication of my daughter and everyone like her. Defeat Autism Now. Cure Autism Now. Defeat Autism Yesterday.

Against such large, highly mobilised, politically aware organisations what chance did my daughter have to be viewed as someone worthy of respect? If she was seen as someone to defeat, how could she ever win at anything?

So I started to fight back. I don’t want to fight. I want these people to accept our children, both young and grown, up as _different_ – with _different strengths_ because my daughter and everyone like her shouldn’t be a prize to fight over. She should just….be….and be respected and allowed to just be. Nobody’s drowning in a tsunami over here. Nobody’s disappeared into the maw of a holocaust.

This is an emotive subject we all talk about. It goes right to the heart of what it is to value and be valued. I believe those who wish to ‘cure’ their children love them deeply in the vast majority of cases. However, I also believe that they are mistaken about the risk to benefits ratio that such treatments can offer. I further cannot understand how one can wish to remove something and also claim to value it.

My choice is that I will do my utmost to change the world for the good of my children. I will not see them dismissed as a collection of medical ailments to be treated with dangerous things. There is no respect in that position. There is no chance for a child to feel positively about themselves.

It shouldn’t have to be that way. In an ideal world it wouldn’t be. But in a world that contains people like John Best Jr – a racist, homophobic parent of an autistic child who runs a blog entitled ‘hating autism’ and who claims to know his child is mercury poisoned despite that child never having *even been tested* for any form of metal poisoning then I cannot stand by and let these things go unaddressed and uncommented on. My daughter needs a daddy who’ll fight for her when the need arises. That that is a necessity is, as both Susan and Estee intimate, a tragedy.

But sadly, it seems it is a necessity.

In Retrospect…

1 Mar

Its no secret that like a few others I was once someone who believed that my daughter had been injured by vaccines and that that injury had resulted in autism. Its also no secret that I no longer believe that to be true.

There are many reasons why not. Some are logical reasons, some are medical reasons, some are intuitive. The logical reasons are the overwhelming evidence against a vaccine/autism causative connection and the underwhelming evidence to support that theory. The medical reasons are private and will remain so. Suffice it to say there are better labs than Doctors Data and Great Plains around.

What about the intuitive reasons? Well hell, I can be just as big on observation as anyone and thats what I base my intuitive opinion on. I hear about how autistic people cannot progress without a huge mix of treatments designed to reduce mercury and then I look at my six year old daughter who still doesn’t talk regularly but does talk much more than she used to and who can use a mouse and keyboard to use Windows XP to start Firefox, access her personal Bookmarks and browse to the BBC website to play educational games, or browse to Shockwave to play slightly less educational games ( you know – fun), or who is 99% toilet trained (we’re still working on night times and school), or who sings the most beautiful renditions of her favourite songs (she still has a woeful taste in music – Westlife and Robbie Williams whereas her Dad is still trying to get her interested in The Pixies or The Clash), or who fetches and puts on her DVD’s and uses a remote control perfectly to get to her favourite ‘rewind’ moments.

Oh and she still stims (and enjoys it) and still adores anything water related to the point of obsession and still has the odd meltdown and still is troubled by excess noise and the texture and colour of certain foods but we work on those things if she finds them uncomfortable and (the stimming for example) let her do what she wants if she enjoys it.

But what about the vaccines? What do I observe that makes me so sure that her autism was actually there from the start now? That it didn’t occur later? Well, what I look at is her baby sister. Nine months old now and everytime she learns something new, we say to each other ‘you know, now that I think about it, Megan never did that!’ – things like the craving of eye contact, the reaching out for people, the word salad that is becoming closer and closer to ‘Mum’ and ‘Dad’ and ‘Nan’ every day, the non-obsessional interest in baths!! We look at these things and realise that we were wrong – Meg was always autistic. Tabby seems to be totally NT. I love them both just the way they are.

The Geier’s Go Dumpster Diving Again

28 Feb

In their increasingly forlorn looking attempt to get some kind (any kind!) of connection between thiomersal and autism, the Geiers launched a new paper. Announced in the Schafer Mercury Report as follows:

The study, published in the Journal of American Physicians and Surgeons, a peer reviewed journal, by Dr. Mark Geier and David Geier examined two independent databases maintained by the government – one national and one state.

Oh-ho…..the infamous Journal of American Physicians and Surgeons. Described as:

The Journal of American Physicians and Surgeons seems to be little more than a conservative publication gussied up with a medical spin. A look at the references in the illegal-alien report, written by Madeleine Pelner Cosman — a “medical lawyer” whose previous claim to fame appears to be a book on medieval cooking but who has also written an article for a group called Jews For The Preservation of Firearms Ownership — is chock full of hardline conservative cites, including books by Michelle Malkin and former WND writer (and Slantie winner) Jon Dougherty and articles by Phyllis Schlafly and Tom DeWeese.

Source.

And the peer review process is commented on thusly (source as above):

The latest book by Ann Coulter is also reviewed, which claims that _”Liberalism (socialism), one of the most disastrous sets of ideas ever conceived, is at war with civilization.”_ Makes one wonder about the peer review the journal claims to have.

Not a very encouraging start.

But what about the meat of the Geiers report? Is it any good? Here’s where the Geiers get their data from:

A two-phase study was undertaken to evaluate trends in diagnosis of new NDs entered into the Vaccine Adverse Event Reporting System (VAERS) and the California Department of Developmental Services (CDDS) databases

Oh dear. Looks like the Geiers Have gone dumpster diving again.

These sources are terrible. The VAERS is not intended for this purpose, a fact spelled out in big bold type on its page:

…..Therefore, VAERS collects data on any adverse event following vaccination, be it coincidental or truly caused by a vaccine. The report of an adverse event to VAERS is not documentation that a vaccine caused the event.

Source.

Dr James Laidler has this to say about VAERS:

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database. Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Source

He goes on to say (source as above):

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports..

As for the California data, the Geiers are simply reproducing the same mistake that Rick Rollens made before them. A simple question to David Kirby would’ve revealed that the California data can only be reflected accurately in cases of 3-5 year olds, whereas the Geiers state they studied:

The *total* new number of autism reports received by the CDDS

Geiers.

This material was covered at the start of this very year.

And these people are apparently scientists. To paraphrase a friend – ‘if they walk like ducks, sound like ducks…’

Quick Quiz

24 Feb

I came across an interesting post on EoH today. Its interesting for lots of reasons, notably its misrepresentation. A few of the responses (from Erik and Wade notably) referred to me so I thought I should at least grace them (and the op) with a reply.

_QUICK QUIZ:_
_Which physical symptoms should be ignored in children with mercury- induced autism, so that their parents can “celebrate their neurodiversity”?_
_1. Chronic burning diarrhea_
_2. Constipation with grapefruit-sized blockage_
_3. Intestinal diverticuli_
_4. Seizures (petit mal, grand mal, tonic, clonic)_
_5. 75% under normal body weight_
_6. Lesions lining intestinal mucosa_
_7. Esophineal esophagitis_
_8. Food texture sensivitiy and swallowing difficulty_
_9. Asthma and reactive airway disorder_
_10. Allergies to foods, fabrics, toys_
_11. Immune dysfunction_
_12. Chronic sinus infections_
_13. Chronic upper respiratory infections_
_14. Cycling viruses_
_15. PANDAS (strep)_
_16. Vitamin and mineral deficiencies_
_17. Yeast overgrowth_
_18. Kryptopyrrole overload_
_19. Phenol sensitivity_
_20. Liver and kidney stress_
_21. Precocious puberty_
_22. Thyroid malfunction_
_23. Brain lesions with demyelination_

_If I missing anything, please find more from the Autism Research Institute, Thoughtful House, Autism Treatment Network, HRI+Pfeiffer Treatment Center, or the hundreds of doctors treating these children’s physical disorders._

_Inevitably some people reading the above list will still deny the existence of our children’s physical pain despite medical tests and observational data from tens of thousands more. As the adage goes, there are none so blind as those who will not see… when their personal filter of communication becomes a cataract._

_Perhaps at no other time in history has it been so common that when truth is not expedient, people create convenient fictions. Rather than actually witness or try to help, it’s quicker to indulge inlurid oppositional imaginings from the comfort of one’s home. This denial perpetuates the suffering of children, and that is morally indefensible._

_Nancy Hokkanen_
_Minneapolis_

OK, so first lets answers Nancy’s question _”Which physical symptoms should be ignored in children with mercury- induced autism, so that their parents can “celebrate their neurodiversity”?”_

The answer to that would of course be ‘none’. Where on Earth did anyone get the idea that ignoring things like chronic diarrhea or Asthma is part of neurodiversity? My own daughter is Asmathic, as is my son, I can assure you I don’t ignore their asthma. Such a belief indicates either a lack of reading or comprehension ability – or more likely, a propensity to not have actually ever read up about the subject one’s discussing. From the Neurodiversity Wikipedia entry:

Most supporters of neurodiversity are anti-cure autistics, who are engaged in advocacy. In addition, some parents of autistic children also support neurodiversity and the view that autism is a unique way of being, rather than a disease to be cured. Such parents say they value their children’s individuality and want to allow their children to develop naturally. According to proponents, autistics may need therapies only to cure comorbid conditions, or to develop useful skills.

And thus we come around once again to the issue of comorbidities. In a response to the above post, Erik said:

As one of our favorite folks in the “ND” crowd likes to say… all those things are just “co-morbidities.”….Please…

And Wade said:

As I have asked our friend about his use of that term, if comorbidities are the cause of the dysfunctions by which our children are being diagnosed, can we really call them comorbidities?

Truncated source.

So yet again – misrepresentation.I have never claimed *all* those things are comorbidities. Its quite clear that some of those listed have no relationship to autism at all and (for example, precocious puberty) are only in there to justify the use of quacky therapies.

However, its easy to tell if a person is autistic because they’ll have met the diagnostic criteria for autism – if they meet the diagnostic criteria for having Asthma then guess what – they’re asthmatic! If they meet the diagnosis for precocious puberty then guess what? Thats what they have!

What about Wade’s point that these comorbidities are causing the problems leading to diagnosis? Well there are several issues with that. If someone is getting a diagnosis of autism if they exhibit some or all of the above list then the diagnosing Doctor is clearly off his or her trolley. If the Doctor is saying – ‘your child is on the spectrum and they also have several comorbidities’ then thats something else entirely. What Wade is essentially postulating is another, seperate form of autism that Nancy calls ‘mercury induced autism’. Of course, this is just circular reasoning – these symptoms are attributable to mercury, my child is on the spectrum therefore mercury caused my child to be on the spectrum.

If we want to ascribe a whole new type of autism to these kids then we have to do the science. The first step is ‘can mercury cause autism’? Without that step, the whole thing comes crashing down. And so far, there is no evidence it does. the symptoms of traditional mercury poisoning and its variants such as Pinks Disease bear no relation to the symptoms of autism – *and neither do they bear much relation to the list Nancy made* that I quoted above.

So on what basis, other than a belief that it did amongst a minority of parents, can we accept the possibility that mercury causes autism? Thats not to say it definitely doesn’t of course but its certainly not looking good at all as a theory.

Then, sadly, Nancy ruins the fun and gets all moralistic:

Perhaps at no other time in history has it been so common that when truth is not expedient, people create convenient fictions. Rather than actually witness or try to help, it’s quicker to indulge in lurid oppositional imaginings from the comfort of one’s home. This denial perpetuates the suffering of children, and that is morally indefensible.

Well, I certainly have no problem with that first sentence – I think the targets Nancy and I have are oppositional however. And where exactly is anyone denying the suffering of children? This accusation gets leveled time and time again and I’ve yet to see anyone who postulates it actually back it up. If your child is Asthmatic, like two of mine, I know exactly how nasty and scary it can be. All I’m saying is that saying asthma _is_ autism – that the former can be used to diagnose the latter is wrong.

So to recap – if your child has a diagnosis for all of the above (and I mean a diagnosis from an actual Doctor, not a quack who’ll wheel out a diagnosis because they’re ‘excited’ about trying their brand new pet theory out) then go right ahead and treat them – to do otherwise would be insane. However, don’t make the mistake of thinking that a diagnosis of these things is equitable to a diagnosis of autism.

Lupron Rears Its Head

22 Feb

The issue of Lupron finally raises its head above the parapet of autism. I’m going to attempt to ‘bring together’ the various discussions that have sprung up and then have my say on the subject. But before I do, lets just clarify what we’re talking about.

There is an unsubstantiated theory put about by Boyd Haley and the Geiers that testosterone levels are raised in autistic people. There is a further unsubstantiated theory that high testosterone counteracts the bodies ability to be chelated of its mercury efficiently. That the excess mercury got there is also due to an unsubstantiated theory that thiomersal in vaccines is responsible.

The use of chelating agents (which alter the body’s chemistry) have never been tested for safety or efficacy for autistic people (who have chemically different brains than non-autistic people).

So, in my opinion, we have a potentially dangerous and thus far non demonstrably necessary treatment being administered to autistic people. It was put about awhile ago that a typical course of chelation should last 18 months to two years. Now we seem to be approaching that time scale for a lot of children and there seems to be little to no response (unless you believe the unverified claims of Generation Rescue), there’s now a casting about for a reason why the chelation isn’t working as was first thought.

Yes, I have my own opinion as to why it isn’t working. I’m sure you can guess what that opinion is.

But whats _their_ opinion? The chelationistas? Why, that all that pesky testosterone is impeding the chelating of all that pesky mercury. And what reasons are given for that idea? Why, that there are four times as many male autistics as female autistics.

Now that the testosterone theory is out in the wild, suddenly the chelationistas are ‘remembering’ that their kids seem to be developing quickly, that they have a lot of body hair, that they become violent during chelation.

Yes, I have my own theory why they become violent during chelation. I’m sure you can guess that opinion is.

And thats it. Thats why there’s a sudden mad dash for Lupron. So lets now look at how its used.

Quite simply, its being used because the Geier’s are ‘excited’ about using it.

Try going to the NAA website and ordering the DVD or CD from the Geier’s lecture this past weekend. You’ll learn about their work with testosterone and Autism. This research is in its’ infancy, but the Geiers are SO excited about this topic.

Onibasu.

Dr. Geier now has a testosterone study going on, I think it’s Lupron injections every 45 days? until age 12, while chelating with DMPS-TD. there’s some other stuff, too, he’s got I think 8 kids in the study, we’re working on getting all the stuff out of the way for allie Kat to participate, last I knew he had no girls.

EoH.

My daughter will be seeing the Geiers this winter/spring and we’re about to have her tested to see if their protocol is appropriate for her. I’ll report the results when we have them…but in the MEANTIME, you can watch the Reverend Lisa Sykes discuss her son Wesley’s progress after receiving Lupron treatments!

EoH.

Kathleen at Neurodiversity has a very thorough round up of this side of things which I strongly suggest you read. But lets not pretend – children are already being treated with Lupron.

So, just to recap – an unsubstantiated treatment is now being used to treat an unsubstantiated condition which allegedly aids an unsubstantiated process.

But what _is_ Lupron? Whats it used for?

Its used to chemically castrate sex offenders in the US and also to treat Prostrate cancer. Basically it inhibits testosterone. In females it can cause a drug induced menopause. Its only legitimate sue for children is to treat precocious puberty.

There’s been at least one lawsuit associated with Lupron.

Many women with endometriosis who have been given Lupron injections have had severe side-effects, including cardiac arrhythmias, dizziness, swelling, chest pain, depression and confusion, bone pain, extreme fatigue, vision loss, high blood pressure, and nausea. Some of the women claim their side- effects last long after treatment is completed. The plaintiffs in the lawsuit against Tap claim, for example, to have experienced serious injury after Lupron injections, “resulting in pain and suffering, disability, disfigurement, mental anguish, loss of the capacity for enjoyment of life, expense of medical care and treatment, loss of earnings, loss of the ability to earn money.”

This is a serious drug. Nothing to make assumptions about – nothing to treat _children_ with unless they have a diagnosis of Precocioous Puberty which can be tested for without needing to inject Lupron.

The science that underpins the Geiers is practically non-existent and based pretty much on either their assumptions regarding mercury or their assumptions regarding testosterone – neither of which are authenticated. You can view an overview of the bad science behind the Geiers suppositions at Bartholomew Cubbins site and at an ongoing discussion at the Not Mercury site.

What happens when Lupron is deemed ‘inefficient’? What will be the next inhibitor? What will be the next unnecessary chemical pumped into autistic kids to ‘uninhibit’ the chelation process? And lets not even start on the bizarre cognitive dissonance necessary to refuse to trust Big Pharma regarding thiomersal and yet rush to embrace it regarding Lupron.

Web Developers Are Idiots Too

13 Feb

Very infrequently on this blog, the two main areas of discussion (autism and web development) intersect. Today is one of those times.

You may or may not know that the US National Federation for the Blind are suing Target over their inaccessible site. The NFB alerted Target some months ago and to retrofit the changes would be easy so they can hardly moan about it – besides, do it right the first time, hire a developer who knows his job. Its not rocket science.

The really appalling thing has been the whiney response of the web dev community:

Filing a lawsuit after 10 months of their initial contact with the company (if this is true, a pretty short legal time frame even in this dynamic world) is an irresponsible use of our over-burdened court system.

Src

The bottom line is I will not be the burden on the tax payers of my state by abusing a law that was enforced by some special interest group in a court of law.

Src

The internet is not a birthright, neither is the phone, neither is buying an electric blanket at Target and it has nothing to do with lack of empathy. Blind people can’t drive cars either … shall we sue the auto makers that they aren’t making automobiles accessible?

Src

Yes, it’s bad form for sure. Who doesn’t know enough to use alt tags? But I certainly hope the lawsuit gets thrown out.

Src

Alt ‘tags’. Right.

This is not the sixties and we are not fighting an evil empire. This is simply a case of a retail company not putting enough time and thought into one aspect of their sales.

Src

I’d say there’s a whole bunch of people here who like to put other people in little boxes. What would the collective response be if Target suddenly stopped serving black people? Or Jews? Or Hispanics? Or women? Or gay men? There’d be outrage and quite rightly so. Discriminating against a person simply because of their level of ability is wrong. Legally and ethically.

This isn’t a case of having to go back and make large scale changes – _any halfway decent web developer already knows how to make a page that will at least comply to Priority 1 for christ’s sake_ .

And thats at the heart of both the 508 legislation in the US and the DDA over here – no one _wants_ it to come to a court case but the simple fact is that a lot of so called web developers are basically shit at their jobs. If they really can’t do it right then they should get back to something they _can_ manage – McDonalds are always hiring.

But then things start getting really nasty.

Whats ignorant is thinking disabled people are normal. They are not normal. Stop drinking the PC happy juice. The idea that everyone, regardless of their personal condition, has a “right” to the exact same life is one of the most ridiculous notions of the modern era. Here in the US we spend 10x more per year to send one disabled kid to a normal highschool than we spend on the smartest kid in that highschool. Then we wonder why our kids aren’t as smart as those from other countries. Chances are the disabled kid probably doesn’t even know the difference, its only so his parents can feel their kid is normal.

Src

I’m not ignorant to the plight of the disabled, be it from birth or some accident/problem during life. I have my own problems (although not to this extreme, I admit) and the one thing I don’t do or accept is whining and crying about it. Accept your limitations, revel in what you still CAN effectively do, and deal with the rest in a more dignified and appropriate manner.

Src

This is from a so called web development community – SitePoint forums. I’m ashamed to say I have bought books from them in the past but they can rest assured I won’t be doing so in the future. The opinions expressed in that thread (and I only went three pages in, I couldn’t stand the sheer idiocy on display) seem to me to demonstrate something clearly lacking in these people. Yes, they’re largely ignorant on a technical level (one of these goons said as websites were purely visual why should blind people expect to be able to use them) but the more disturbing thing, speaking as the parent of an autistic child, is the indifference bordering on malevolence these comments reveal on the part of the commenters.

So you might be thinking – ‘so there’s some nasty arseholes around – big news’. And you’d be right. Ask any parent of any person considered to be different and you’d find some fairly depressing tales about society at large. Better yet, ask the people themselves and you’d hear some true horror stories about the interaction between those considered disabled and those considered abled.

This is 2006. Its not the 19th century. However, I fear that the likes of the idiots quoted above are firmly in the majority – those who will campaign to put money before people and those who will indulge their dislike of anyone different from them. We need to find a way to get past this irrational fear and hate of difference or not only do we become ethically corrupt (or more accurately _remain_ ethically corrupt) we stagnate as a species.

Vive la difference. Celebrate diversity. Whatever. Just try to find a way past the prejudice of idiots – then we all win.

Autism Is A Gift

12 Feb

OK – before I start its important for me to confess to a conflict of interest in this matter. As a fresh faced young man, Sigourney Weaver formed part of my Godess Trifecta in that I lusted after her, Gillian Anderson and Geena Davis with equal amounts of teenage/twenties lechery.

Ms Weaver has recently finished filming Snowcake in which she plays an autistic woman whos daughter dies in a car crash. My good friend, the incomparable Autism Diva has written a piece about it here.

During an interview, Ms Weaver said:

“I think we have to begin to see it [autism] as a gift,” she told a news conference. “We may not understand what it’s there for, but if you’re in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is.”

I have to say that despite my teenage carnal desires for Ms Weaver (OK, OK, I still have them) I don’t agree with her stating that ‘autism is a gift’. I don’t agree with it for the same reason that I don’t agree with the ‘autism is hell/death sentence/evil/etc’ viewpoint. Both views, taken literally, are misleading and superficial. Its my opinion that autism simply ‘is’. To be autistic is to be autistic. To be right-handed is to be right-handed. To be gay is to be gay. None of the states of being have moral or ethical states associated intrinsically with them and they don’t, in my view, need that status thrust on them either.

That said, its difficult to disagree with the positivity my future bride Ms Weaver brings to the state of being autistic and how we as NT’s can relate to it positively.

As ever though, there’s a bunch of literalists who still can’t see the woods for the trees:

A gift to whom? Surely not the person with autism, or his or her family. Perhaps actresses in search of roles? If autism is a gift, what’s terminal brain cancer? Hitting the Lotto?

John Gilmore, EoH List.

…If I sent her a letter I think that it would be along the lines of telling her how very happy it would make me to have her experience this ‘gift’ in her own life, ie, by injecting HER with enough toxins to destroy her body and mind.

Robin Nemeth, EoH List.

Ms. Weaver is no doubt confused over the junk label “high functioning autism.” It is not too late for her to personally experience the joy of autism. I’m sure she could find one of those mercury lusting doctors to shoot her up enough Thimerosal for her to join the bandwagon of the neurologically injured. OK, that’s my sarcastic take.

Lenny Schafer, EoH List.

What a bunch of me-me’s. These are the people who refer to themselves, with no apparent irony, as the autism community.

However, there was one great post on EoH which I have pleasure in quoting in full:

Well, even though I know this is gonna open a can of worms, I agree with her. When I’m in the presence of people with autism, I do learn a great deal. I learn acceptance of others who I would not have accepted as people only a few years ago. I learn that the person with autism has just as much dignity and right to be respected as anyone else. I also learn what pure love is and how scary it is for people with autism to trust others because they are often ridiculed by others. I teach my daughter every day that having autism should be source of pride; to contrast, it certainly isn’t something she should be ashamed
of. Yes we work on healing her body, but I’m proud of her and want her to have pride in herself regardless of treatment status. Because people with autism can suffer with horrid medical conditions and the people who care from them suffer does not mean people with autism are not wonderful people. From what I read, that’s the meaning I got from her, that people with autism need love, respect, and acceptance.

Debi, EoH List.

Debi, if you ever read this, you may be alarmed to know that you’re frighteningly close to espousing something very very close to what I think of as neurodiversity. Good on you for seeing the bigger picture.

Then we swung back to comedy:

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

Erik Nanstiel, EoH List.

Something of an irony when one considers that in the EoH file repository is a document that contains the sentence:

Finally, for the ultimate inspiration, here is a video of actor Lou Diamond Phillips introducting a cast of recovered autistic children

EoH Files.

Many people on the EoH list suggested emailing the films writer Angela Pell to let her know that she obviously had no idea about the hell of autism. Apparently they missed the bit where Ms Pell is described as having an autistic son and therefore knows just as well as they do both the lowpoints and the highpoints of parenting an autistic child.

And you are the parent of a child diagnosed with autism, everyday you are immersed in your child’s life and you deal
with the hardships that come with autism. You have a right to say that. Weaver doesn’t. Weaver is talking about what other people can get out of people with autism. She is not part of our community, she hasn’t paid her dues.

John Gilmore, EoH List.

Just to reiterate for the hard of comprehension – Ms Weaver is an actress, playing a role written for her by someone _just like you_ – the parent of an autistic child. All the words she utters were put in her mouth by the writer. Her beliefs have come from interacting with Ms Pell, Ms Pell’s son and people like him – y’know – autistic people.

In the post quoted above Gilmore goes on to say:

Our children are gifts and we should be grateful for them exactly the way they are. This is exactly what the neurodiversity types are saying.

Not quite John. I don’t consider autism a gift or a curse – it simply is what it is. Also, no one is saying you should ignore bad situations. What I’m saying as someone who respects the state of being autistic is that _that’s_ whats important – respect. You don’t have to be grateful for anything other than the fact that you managed to have a healthy living child. Some people don’t even get that. Whining on about ‘its not fair’ is pointless.

Then there’s the usual mistaken identities:

Sigourney Weaver is more than welcome to join me at the IEP meeting at my son’s school. Maybe she can make them understand that my son has been granted the “gift” of a comprehension level of a preschooler when he is 9 years old.

Jane Milota, EoH List

I’m not sure I would consider the way other children treat my son “really good fun”. I wonder if he’s having fun when they pull his hat over his eyes or just grab it off and throw it as far as they can. It’s not “really good fun” for me to try to explain to him that these children are not his friends. Apparently it is “really good fun” for these children that my son does have “high-functioning autism” Maybe Ms. Weaver and Ms. Pell would like to take a trip to Long Island and see “the gift” my son enjoys every day.

Cathie, EoH List.

Both tragic, horrifying situations but *not the fault of autism*. One is the fault of a schools ignorance and one is the fault of bad parenting by the people Cathie’s son has to deal with.

We really do have to find a way to move away from demonising a state of being that simply is what it is. The fact that its still poorly understood, badly catered to and swept aside is something that parents should be campaigning about – not getting caught up in fictional causative arguments.

Peter Fletcher, Melanie Phillips and the Daily Mail – A Cracked Facade

9 Feb

The Daily Mail published another MMR piece earlier this week. As usual it had the predicted results in that it stirred up the usual frenzy of illogic and fallacy.

Why do I say that?

In order to explain we need to fast-forward a couple of days to where Melanie Phillips, Andrew Wakefield’s staunchest media supporter in the UK, published her own follow up to the Mail story. I urge you to go read both pieces now before you read the rest of this.

OK, done? Good.

So lets talk about what was said. Basically, the gist of both articles is now the medical community in the UK _have_ to take the MMR link seriously because Dr Peter Fletcher, ex-Chief Scientific Officer at the Department of Health has said a few things about it.

On the face of it thats pretty impressive – this isn’t some no-nothing from nowhere – this is an *ex CSO*. But once you get past the fact of who he _is_ and start to isolate what he’s actually _saying_ then, to borrow a phrase, the facade starts to crack.

First is the fact that this sort of argument – based on his good standing in the past – is a sort of reverse Argumentum Ad Hominem in that it is argued that it is equally or of more importance regarding who Dr Gordon _is_ as oppose to what he _says_. This is, of course, a fallacious position from which to start.

So what does he (and the original article) actually say?

[Dr Gordon]….has accused the Government of “utterly inexplicable complacency” over the MMR triple vaccine for children.

Thats simply an assumption based on his circular reasoning that the MMR has routine or above average negative effects: as an argument it relies on the reader agreeing that there is a case for the Gvmnt being complacent in the first place. Since the establishment of this case _is whats actually being debated_ its safe to ignore this as pre-conceived bias.

[Dr Fletcher]…..said if it is proven that the jab causes autism, _”the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history”_.

Well, d’uh. How is that news? Its obviously true and equally obvious entirely irrelevant to establishing a case for believing MMR has a role in causing autism. Its a tactical appeal to emotion – nothing more.

He added that after agreeing to be an expert witness on drug-safety trials for parents’ lawyers, he had received and studied thousands of documents relating to the case which he believed the public had a right to see. He said he has seen a “steady accumulation of evidence” from scientists worldwide that the measles, mumps and rubella jab is causing brain damage in certain children.

This is at the heart of the two articles. Dr Fletcher however simply invokes the spirit of these ‘thousands of documents’ and doesn’t discuss them or what they contain at all. It may well be that he’s hampered by the legal constraints of the case(s) in question but thats really besides the point. What we need to know is – what can Dr Fletcher _add_ to the debate? Both the epidemiology and the hard science have refuted the MMR link on more than one occasion. If Dr Fletcher has peer reviewed journal based evidence that contradicts or invalidates the science done so far then he should state it. At the moment he is simply repeating a fallacy of intuition, magical thinking and an argument to the future. None of these lend any scientific credence to making a case that supports the idea that the MMR jab caused or contributed to anyones autism. If there’s evidence lets get it peer reviewed and published in a respected journal – anything else is simply hearsay.

But he added: “There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.”

This is a combination of Galileo gambit and a fallacy of the assumed but hidden truth. In other words its the invocation of a conspiracy theory. Its an easy thing to say because one doesn’t have to prove or even allege who these ‘powerful people’ actually are and thus there is no one available to defend the given proposition. I always think of this as the last refuge of the truly desperate. If someones case is strong enough then why resort to such a transparent and desperate tactic?

Clinical and scientific data is steadily accumulating that the live measles virus in MMR can cause brain, gut and immune system damage in a subset of vulnerable children,” he said.

It is? Where? In fact the vast weight of scientific evidence has very recently concluded that there is no link.

There was no credible evidence behind claims of harm from the MMR vaccination. This is the conclusion drawn by the Cochrane Review Authors, an international team of researchers, after carefully drawing together all of the evidence found in 31 high quality studies from around the world. They also highlight that the policy of encouraging mass use of MMR has eliminated the scourge of measles, mumps and rubella from many countries. _”In particular we conclude that all the major unintended events, such as triggering Crohn’s disease or autism, were suspected on the basis of unreliable evidence,”_ says lead author Dr Vittorio Demicheli who works at Servizo Sovrazonale di Epidemiologia, Alessandria, Italy.

By contrast, Dr Fletcher yet again fails to say _what_ this ‘vast weight’ of scientific evidence was, where it could be found and who produced it. He just says its there. And we should just trust him because he’s cleverer than us.

Yet there has been a tenfold increase in autism and related forms of brain damage over the past 15 years, roughly coinciding with MMR’s introduction

Really? Obviously Dr Fletcher (and the Daily Mail) don’t examine the actual science which states:

The new study, which involved 10,903 preschool children in the United Kingdom, confirmed the elevated autism rate, but clearly demonstrated that autism prevalence is not increasing.

Fletcher also makes the mistake of matching correlation with causation – a schoolboy error for any scientist.

He said there was “no way” the tenfold leap in autistic children could be the result of better recognition and definitional changes, as claimed by health authorities.

Another totally specious statement with nothing to back it up. Fletcher might well believe it but as he provides no evidence then its just an opinion. In fact, scientific studies in the US indicate the rise in rate _is_ down to better recognition and diagnosis.

“It is highly likely that at least part of this increase is a vaccine related problem.” he said.

Again, this may be Fletcher’s opinion but he provides nothing in the way of support for it. This isn’t science, this is just gossip.

And thats just about all of Dr Fletcher’s contribution to the debate. Fallacy, lazy reasoning, assertion and unverified claims. It comes as no surprise that other lazy thinkers hype such garbage when they have so little science to support their position.

Autism Hub

9 Feb

I’ve instigated a new project today that I’ve called Autism Hub.

The idea is very simple – to aggregate blog feeds regarding autism in one place. Its very difficult sometimes to extract meaningful information from the huge sea of data that comprises the Internet and there’s so much we’re in touch with now that we wish we had been when we first began this journey that it seemed a good idea to try and unify some of the pertinent content out there.

Obviously, my beliefs being what they are about autism, I’ve set a ground rule that all the blogs that form the Hub membership must adhere to the central concepts of a) respect for the condition of being autistic and b) not promote a ‘cure’ mentality. That doesn’t mean the blogs that form the Hub don’t discuss interventions such as speech therapy, PECS etc because some of them may well do.

Basically, what the site does on a technical level is to periodically grab the RSS or Atom Feed of the members blogs. It then extracts the latest post from that feed and enters the details of that post into a table in a database on my server. Whenever someone accesses the Hub site, they access the data in the database.

There’s also a directory listing of all the member blogs on the site as well as a link to their Feed. There will also shortly be a dedicated RSS feed for the last 10 posts across all Hub members.

The Hub site itself is at a very basic level of functionality right now to which I hope to add over time. In the future it may be that visitors become users and can create their own aggregated content from the feeds provided which they can pick and choose from and save their preferences.

In the meantime, go have a browse around – there’s about 14 members signed up so far. If you know of any blogs who you’d like to see added to the Hub or you yourself maintain an autism related blog you’d like to join, please let me know as per the instructions on the site.

For those interested in the technical details of how the code works I expect I’ll be discussing that in a separate post under the Right Brain category at some point in the near future.

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