Archive | December, 2005

A Very Autistic Xmas….

30 Dec

….hurrah!!!

First off, its traditional to talk about what your stash was so here’s mine. First up was the traditional Dad pressie of socks. A nice 3 pack of Pierre Cardin beauties. I’m wearing them right now and can report positively on their efficient and comfortable foot covering qualities. I don’t think my socks will ever reach the same heights of fame as some socks have in the past but hey – they work for me.

Next up, my kids each got me my most favourite of Xmas pressies – a book. Each reflects my abiding love for all things historical, particularly British history, so I look forward to cosying up for the next couple of weeks and getting immersed in Tudor England, Norse legends and the British military.

My beautiful and wise wife got me 2 gifts, first was the new David Gray CD which is hauntingly good. The man has a voice that is as ‘right’ as the clear note one gets from tapping the side of a crystal glass.

The second pressie was a rather spiffy camcorder which means we’ll finally be able to make movies of the kids, something we couldn’t afford until we saw how cheap this camera was.

Life over Xmas is an interesting time when you have an autistic family member. Its a hell of a lot of change to have to deal with when you are someone who doesn’t cope well with change and the change in routine (parents home from work who usually aren’t, the bewildering concept of ‘presents’, a bloody great tree in the front room, lots of people dropping off or picking up pressies, cards all over the place) can be very confusing.

We try to maintain a balance. Our non-autistic kids need and deserve a Xmas with all the trimmings but our autistic kids can’t deal with too much Xmas so we scale back the decorations to a tree and a wreath on the front door, autistic kids presents aren’t (or are only partially) wrapped and we tackle the Xmas dinner in stages so that everyone who can cope with Xmas has enough materialism and face-stuffing to suffice and those who struggle don’t get too overanxious. For those people, doors to bedrooms are left open and favourite items are prominently displayed so that retreat is always available if needed.

Sometimes it gets too much no matter what you do and when you also have a young baby who picks up on emotional excess that can result in a run of bad nights. At these times, parents fall back into the ‘shift sleeping’ pattern of one staying up through the night and one taking on the day. For the one taking on the night this can have unexpected benefits as this parent has the chance to watch an entire footy match from start to end without any other adults complaining! Indeed, on particularly bad nights, this parent can watch _all_ the scheduled matches over the Xmas period thanks to Sky’s excellent ‘Football First’ program and the magic of interactive TV. This parent is happy to report that the lads have done well in the last few games and seem to rising clear of the relegation spots that looked so inevitable a couple of months ago.

One of the main areas to monitor is the social aspects of Xmas. Understandably, friends and family want to pop over to see the family, drop off and/or pick up pressies but these visits aren’t as simple as ‘popping over’ to an autistic person. The ground rules for each visit must be established with the visitor before they come over so that the purpose and length of each visit can be understood and tolerated and those rues must be adhered to. Depending on your social circle this can sometimes result in a few people who grumble but screw them – just don’t invite them next year. They take us as we are, not how they want us to be. Our friends are all magnificent in this respect and 95% of our families are as well. One or two can’t commit to putting others needs first but thats their loss. People popping over ad hoc is forbidden in our family. Its just not fair to our autistic kids and our kids come first.

All this organisation puts paid to the traditional British pastime of ‘getting bladdered’ for tired parents but luckily this means one learns to appreciate the glass or two one manages to get of the nice Soave or Chiraz. It also means that your Xmas’s become much more family-centric. Indeed, our whole lives have become much more family-centric since autism entered our collective life. Thats a present that is beyond value.

A Year Today

26 Dec

I don’t suppose any of us will forget the terrible events of last year. A wave of terrible size and power engulfed a massive amount of land and killed a heartbreaking amount of people. Some of the stories that came out were almost too heartbreaking to hear and some of the video footage was too awful to watch for too long.

One group of people who know better than most of you reading this blog about what that day was like and terrible price it took are the Vesessins who blog at Nidahas.com. As native Sri Lankans they were literally at the heart of the issue in a way those of us in the West simply couldn’t be.

In a country that suffers from divisions that run very deep, the overriding message one year on seems to be:

As we remember the thousands who went to the waves, and the many more who are now homeless, let us commit ourselves to bring about a safe and peaceful Sri Lanka for those who did survive. Let us always remember the truism which took a tsunami to bring to light. Above all, we’re all Sri Lankans.

A message of hope and one of a profound wish to end a fight after getting some real perspective on the fragility of humanity.

It saddened and angered me to learn not long after the events of last year that there were some in the autism community who wished to make political hay whilst the sun shone after the tsunami. One Rick Rollens, fellow parent of an autistic child decided to utilise the horrific reaction all people had to the word ‘tsunami’ to better make his point:

California’s Autism Epidemic Tsunami Rapidly Growing….In California’s developmental services system, 8 out of 10 persons with full syndrome autism are between the ages of 3 and 17 years old, 7 out of 10 under the age of 14. The tsunami has arrived.

Leaving aside the fact that Rollens is totally wrong in both his methodology and conclusions, the words and tone he chose to use were at best ill judged and at worst, incredibly tasteless and insensitive.

Firstly is the fact that he was using the word ‘tsunami’ solely as an attention-getter. It has no legitimate context with autism. Secondly is the incredibly insulting use of the word as it applies to autistic people. Comparing them to people flooded out of their homes and lives is very misrepresentative of the nature of autism.

Thirdly is the absolutely shameful belittling of the events of last year. Whatever we feel may _cause_ autism, the fact is that it is a neurological condition at bottom. To associate this state with the death of hundreds of thousands of people is mind bogglingly trite and facile. *These people are dead*. I winced when I first read Rollens words and hoped that none of the relatives of the victims, nor any of my Sri Lankan friends would read them in the first months after the Tsunami. To endure the pain of losing a loved one is the worst thing I can imagine, to lose them in such a way must be awful beyond words. To see one’s country ripped apart must be painful beyond belief. To hear some pontificating person attempt to trivialise their loss by attempting to squeeze political mileage out of it would’ve been just terrible.

It took me a year to blog extensively on either the Tsunami and Rollens ignorance. The reason was mainly that I didn’t want Prabhath or any of the other guys at Vesess to read about it too soon.

Words matter. It really matters what words people use and how they’re used. With words you can build up and knock down. Using words you can show a reality or twist it. There are a lot of people out there who need to think long and hard about the sort of associations their words create and whether they are mature enough to use illustrations from a perspective that is clearly beyond them.

A Statistical Year in Blogging

20 Dec

Its that time of year when we all look back at the year from the perspective of your own blogs/ideas/thoughts etc. I’ll have some more to say about that in a bit but firstly some incredibly dull fascinating visitor statistics for this site this year (excludes Bots,spiders and feed-readers):

This site has received *112,412 unique visitors* this year.
It has received *272,008 total visits* this year.
It has served up *2,609,187 pages* this year.
It has received *5,292,786 hits* this year.
This sites most popular day is a Thursday.
More *Americans* visit this site than any other nation.
This site has been visited by people from *152 countries*.
This site has *approximately 220 subscribers via Feed Readers* (most from Bloglines but an increasing amount from Rojo).
The most popular browser is *IE 6.0* with Firefox 1.0.? coming a very close second.
The site has been indexed by *45 Search Engines and Directories*.
The site’s most popular referrer is *http://cssvault.com* with nearly 20,000 unique referrers this year.
The site’s been found by searchers utilising *15,111 unique keyphrases*.
The most popular phrase to find me is ‘autism blog’ which brought 429 people to the site.
*52 people* have added this site to del.icio.us
I currently rank: 13,387 (285 links from 110 sites) on Technorati.
The site has a PR that fluctuates between 6 and 8 on Google.

Thats all very interesting and confirms my theory that my amount of readers vastly outnumbers my active commenters. As an aside, I’m very curious as to who all these lurkers are – if you fancy dropping a ‘hi’ to the comments of this post that’d be great – you can do it anonymously if you so desire :o)

This year saw me start blogging more about autism as a social/medical issue and less about it as it relates to my daughter. This is something of a shame as I know many people enjoyed reading posts about her. There are a few reasons why I stopped which I’ve discussed in other places.

Also this year saw the launch of Project: New which was an attempt to provide a starting point for new web designers and web designers new to web standards to get a good start in the field. It didn’t end up quite how I expected but I was very pleased with both the response it received and the end product itself. I plan on starting Project: New Part II at some point next Spring. Part II will concentrate on client and serverside scripting.

More recently, I came to the conclusion that whilst the blog was good for provoking discussion that that discussion frequently become bogged down in side issues (I’m as bad as everyone else in that respect) so I started up a forum to deal with autism from a scientific point of view to create a calmer and more rational place – the blog is more heat than light. I’m hoping the reverse will be true for the forum.

As for next year, I have plans. As I say, Project: New Part II is crying out to be written and I’m planning a ‘from the ground up’ revamp of the blog and forum. I want to present a more accessible environment and besides, I’m getting bored with this design ;o)

Who’s That Girl?

15 Dec

The five year old girl came carefully down the stairs (she felt unsteady on stairs generally) singing the latest Westlife single at the top of her voice. “YOUU LIFT ME UUUUUUUUUUUUUUUUUPPPPPP!!!”

Her Dad grinned to himself and recorded as much of the song as he could on his mobile. His daughters rendition of ‘twinkle twinkle’ was already his ringtone – the one where she’d mischievously substituted the word ‘diamond’ for ‘daddy’, making both her parents howl with laughter.

She came into the front room and had a brief acclimatising rock in front of the telly then grabbed the remote, switched to the DVD channel and used the remote to navigate perfectly to her favourite bit of her Bear in the Big Blue House disc (her overly anal in such matters Dad bemoaned the lack of good standardised interface design on DVD menu’s until her Mum told him to shut up).

“Wait a minute….ITS YOU!” Said Bear and sniffed the telly for a few seconds, an event that never failed to send the little girl into a fit of delighted giggles. Once finished, she rewound the DVD and made Bear sniff her a few more times, then she grabbed her own stuffed Bear toy and made Bear (via a tragic impression from her Mum) sniff her again.

Although the little girl was five she still used a feeder cup to drink from as she still hadn’t got the hang of ‘putting it upright’. A fact demonstrated in the interestingly hued furniture and carpet throughout the house. Today she fancied Sunny Delight, a fluorescent looking drink which helped with her occasional constipation.

Drink in hand (she pointed it out to her Mum to illustrate what she wanted) she walked over to the PC, grabbed the mouse, started Firefox (her Dad had banned IE from usage), clicked on ‘bookmarks’, scrolled down to her favourite game of the moment and completed the puzzle based game perfectly. As ever when he witnessed this event, her Dad wished he owned a digicam as he knew there were quite a lot of people who simply wouldn’t believe what they’d seen from this unchelated, uninjected 5 year old autistic girl who’d been diagnosed with Kanner’s autism at age three but due to her own abilities, perseverance and skills coupled with the love, acceptance and encouragement of her parents and siblings was making steady progress towards goals she herself felt comfortable with.

Her parents loved her very much. Just the way she was.

A Fertile Breeding Ground

11 Dec

I’ve said a few times on here and a few times on other blogs that it is dangerous and irresponsible to maintain an absolutist position on just about anything to do with autism. I can’t remember who said it but whenever I see someone claiming to know for sure what causes autism or what the best course of treatment for autism is I recall a quote that goes something like this:

Follow the man seeking answers, flee from the man who says he knows them all.

However, on occasions I have been known to break this self-imposed belief. This is such an occasion.

Skeptico is a blogger that has commented a few times on various aspects of the thiomersal/mmr/autism ‘connection – notably a thorough debunking of the RFK Salon.com piece earlier this year.

Skeptico mailed me today to draw my attention to a comment made on his site to the effect that the wearing of a tinfoil hat designed to prevent alien abduction can successfully treat autism.

As of Dec. 2005 a hat with velostat worn by autistic children has improved their performance markedly. Michael Menkin is seeking more autistic children in the Seattle, Washington area to try the hat. Some of the autistic children who improved after wearing the hat with velostat for over three months are not related to UFOs or any alien phenomenon.

The researhc of Michael Menkin into alien abductions, with interview of several people with encounter experiences, was featured on KINGTV Evening News Program on November 16, 2005.

This is the sort of shit that one has to wade through to find decent research about autism. Is it on a par with the whole thiomersal/mercury thing? Well yes and no.

No because I can at least see a theoretical connection even if I don’t believe that theory and yes because its another example of a theory driven by anecdotal, unverified, untested belief.

Up until Skeptico mailed me this story, my favourite other crackpot theory was the idea that plastic cups cause autism. Again, this is the sort of mindless crap that detracts from valid science, strips autistic people of the dignity they deserve and only extends ignorance.

Notable in the plastic cup story is the role of one Dr. Stephanie Cave, one of the darlings of the thiomersal/autism connection and listed on page one of the Generation Rescue Hall of Fame. She lent support to a theory that claimed:

…that a toddler became seriously ill and, eventually, “began to exhibit autistic behavior,” after drinking from a plastic spill-proof cup made by Playtex. [Dallas-lawyer Brian R. Arnold ] claims the spill-proof cup was designed in a defective manner that allowed bacteria and mold to build in the cup. Alleging the bacteria caused the child’s condition, Arnold accused Playtex of negligence in distributing a defective cup and demanded $11 million in damages.

Cave claimed that the bacteria and mold caused Dysbiosis, a medical term used pretty much exclusively by the alternative health movement.

She was abetted by William Shaw who owns a laboratory famed amongst thiomersal = autism believers as providing accurate tests for elevated mercury. Shaw said that:

…the child had elevated levels of yeast by-products, indicating a “yeast/fungal overgrowth of the gastrointestinal tract.” Dr. Shaw says such yeast infections cause autism.

Unfortunately for Shaw, it seems that the bacteria found on the plastic cup was not the same sort found on the child in question. Good to know that these labs that so many people claim are accurate obviously double check their work.

Autism is a fertile breeding ground for such hocus-pocus and rubbish because it defies current understanding. That we let this sort of thing grow unchecked is dangerous for the health of children (one wonders if this child went on to be chelated based on such a pack of ineptitude and assumption), dangerous for those of us who wish to find a bit of respect for the state of being autistic and ultimately dangerous to us as a society that we are so willing to let such people treat our children.

This is why we need proper, peer reviewed science performed by those who are proponents of theories and treatments that currently have no efficacy or safety studies. If we continue down this road then treatments like the wearing of a tin foil hat used to prevent autism and alien abduction and causes like a plastic cup will become the norm and our children will truly become lost – not in autism but in the real hell of a frenzied knee-jerk search to treat the increasingly bizarre and to forget about what our _children_ who happen to be autistic need more than anything else. I hope you already know the answer to that. If you don’t then I suggest you step away from the quasi-science.

Autism/Science Forum

9 Dec

I’ve set up a new resource.

Its a forum which I intend to use solely for the discussion of the science that supports/refutes various things under discussion that are alledged about autism.

Everyone is encouraged to participate, regardless of where one stands on the issue and all science is allowed to be discussed – whether its peer reviewed or not, I would imagine though that science that is not peer reviewed should be questioned by those who disagree with its conclusions.

Forum rules:

The forum rules are very simple. These forums will only be used to discuss the science that is used to support/refute certain allegations about autism. No discussion on any other topic will be entered into. As this will be a science based environment, the atmosphere should remain polite, with no profanity, abuse, short-temperedness, sarcasm etc. Polite disagreement is encouraged but you must be prepared to back up any quotes you provide with a scientific source. Journalists don’t fall under this category.

I’m doing this for a number of reasons.

Firstly, blogging software isn’t really up to the the task of ongoing discussions. Forum software is perfectly suited to that task. Secondly, it seemed to me that whatever subject I start to talk about lately always falls back to a discussion on the state of the science underpinning autism – providing this forum will hopefully mean a lessening of the inevitable dilution of the subject.

The forum is easy to use – create a username and password and then go and post or read.

Now, the thorny issue of my own beliefs come up and how impartial I can hope to be in allowing some things to be discussed. I hope I’ve shown that I don’t edit or delete anything unless its plain old abuse, illegal or if I’ve asked people not to. However, if the forum takes off then I _may_ need a few moderators to help with crowd control etc. In the interests of impartiality I’ll try and get mods from both the neurodiversity *and* biomedical belief systems. Thats for the future though.

Everything Must Change

5 Dec

It must be true – Quincy Jones never lies after all.

Change comes to us all – for some of us it means radically rethinking what we once believed to be true and for some of us it might mean rethinking something that has brought us fame and adulation.

For those that don’t know him Citizen Cain is a blogger who challenged David Kirby’s interpretation of the numbers as they related to a rise/fall in the rate of autism. Kirby claimed that the rate was falling. Citizen Cain showed him why and where he was wrong.

And for the first time, Kirby responded.

Understandably, Kirby doesn’t seem interested in mucking around in the data with me too extensively, or in answering my detailed questions. But in an e-mail, he did address the key point, and concede that “if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.” He also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

I suggest at this point you go and read the rest of Citizen Cain’s post from which I quote above. The links to the associated posts where he discusses his email correspondence with David Kirby are on that page too.

But lets reiterate. Kirby is not only admitting that if the _total cases_ of autism doesn’t fall then the jig is up, he’s also admitting that up until now his interpretation (and the source for that interpretation – one Rick Rollens) is wrong. Why? Because as he admits after Citizen Cain showed him his errors, whats important is the _total cases_ *not* changes in the rate.

After I read Citizen Cains latest post, I had a little niggle at the back of my head – something Kirby had said this year. So I checked my references and there it was. In an interview with the New York Times, Kirby said:

Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year.

*This* year. Not 2007. Why has Kirby added on 2 years to his interview? This interview with the NYT was conducted before Kirby’s admittance that it was the total case amount that was important not the rate change but thats the only real difference in the two statements. Now maybe I’m missing something but what are the extra two years for?

As far as I can see, when one takes the admittance Kirby issued to Citizen Cain and applies the same criteria to it then it should be the end of *this year* that we should see changes. Big changes.

Everything must change. We have 26 days before we know whether that change is something that I and a lot of others have to address or whether its something David Kirby and his followers have to address.