Autism Gene Found

18 Jul

UCLA geneticist Rita Cantor has found an autism gene according to Discover (via American Journal of Human Genetics). Thats pretty big news on various levels.

Firstly, it going to be something of a blow to JB Handley and Generation Rescue who says that autism is *nothing* but mercury poisoning. I look forward to seeing his retraction. It’ll also be a bit of a blow to all those who follow in Handley’s wake like Lujene Clarke, Wendy Fournier et al who’ve staked their entire reputation on autism being environmental in its entirety. Lujene Clarke is on record on this very blog as stating this. In fact, anyone who’s claimed that autism cannot be genetic will today be cutting themselves a large slice of humble pie.

Except they won’t. Someone somewhere will probably ferret out that Rita Cantor’s Mums Milkmans cat once knew a bloke who knew someone who walked past the office of a ‘Big Pharma’ corporation once and that therefore the results are tainted. Everyone knows that everyone who doesn’t believe in the autism/thimerosal hogwash is in the pay of ‘Big Pharma’.

Even if they can’t ferret out a connection they’ll simply not listen. Or care. For these people, particularly those on the Evidence of Harm list, this isn’t about their kids anymore, this is about politics and winning.

Secondly, we have to be very very careful how we use this knowledge and how its applied. These does set the store out on genetic testing for autism. Obviously this would be quite a long way off just yet but its almost a certainty now. These begins to raise certain ethical questions regarding the morality of testing for things like autism or Down’s Syndrome and what happens to those in whom these differences are detected as well as at what stage of life (before or after birth) they are detected.

Further reading.

Accessibility For Learning Disabilities Needs A Kick Start

15 Jul

I’ve expressed caution in the past that the needs of users with learning disabilities are not being as widely addressed as users with other disabilities such as visual or motor impairments (and, of course, some users have a mixture). Some accessibility gurus have gone so far as to dismiss these users as inaccessible:

So what are the real options? They don’t have a lot to do with your work as a designer or developer…..there is no plan of action available to you in order to accommodate learning-disabled visitors in the way that plans are available for other disability groups…there are no simple coding or programming practices- or even complex practices for that matter- in which you can engage to accommodate this group…..We are left with the knowledge that our sites are inaccessible to a known group with next to nothing we can do about it. However anti-ethical that may seem at first blush, in fact it responds to the real world. Recall that antidiscrimination legislation includes exemption for undue hardship or burden.

Joe Clark, Building Accessible Websites p35. New Riders 2003.

And so accessibility as it applies to those with a learning disability has festered somewhat in the unfashionable backwaters of web development. Occasional bursts of light have attempted to raise awareness but still this is not seen as a priority area for web developers. Even the fact that the user group of those with a learning disability outnumber those with a visual _and_ hearing impairment combined doesn’t seem to have raised many eyebrows.

So what am I going to do about it? I don’t know. I know a couple of the guys on the new WaSP Accessibility Task Force and they’ve indicated to me that this is an issue they’re definitely interested in and thats great news but it shouldn’t be just up to them. I don’t think WAI are either aware of or addressing the issue at all. A lot of checkpoints seem contradictory to me and the WCAG seem weighted towards the needs of users with a visual impairment.

Some Resources

If you go digging there are some good resources that will enable you as a designer/developer to make your information easier to access. At EasyInfo for example there’s a whole website dedicated to discussing ways of making information easier to understand for users with learning disabilities – there’s a lot of vital info contributed _by_ users with a learning disability there. Irritatingly its laid out in a frameset (I can see why but there are better ways of doing this obviously) but its well worth a look as there are free guides to design options, picture banks, using words etc in the Library and Research sections.

There are also guidelines at Learning Disabilities.org.uk on designing a website thats accessible to those with a learning disability.

The Future

I think we have to face some difficult realities about what web accessibility is and face up to the fact that as a community we simply aren’t addressing the needs of a sizable percentage of users. I don’t see how we can have it both ways. If we see web accessibility as in terms of:

Access by everyone regardless of disability is an essential aspect.

Tim Berners-Lee, W3C Director and inventor of the World Wide Web.

Then we have to actually _do it_ , commit to it and move forward on that basis. Or we need to abandon the concept of ‘access by everyone, regardless of disability’ as an attainable goal. Personally I don’t think we need to do that. What we _do_ need as a community is to start looking at specific methodologies using web standards and innovative use of CSS that we can serve up accessible content in an accessible, usable way but we can only do this when we start to actively accept the challenge. We need a starting point, a catalyst – thats my hope for the new Task Force – a group that can make accessibility for users with a learning disability as cool and funky as accessibility and web standards have become over the last year or so.

Big Boys Attempting Web Standards: Commend Or Condemn?

13 Jul

My ISP is NTL. My experience with them has been mixed to say the least. Its not been uncommon in the past to be on hold with NTL for over an hour to sort out a fairly routine issue. I also know of several people who have had horrendous issues with them – one acquaintance was undercharged by a penny for his phone bill and overcharged on his broadband bill by a penny and when he suggested one canceled out the other their system couldn’t deal with sorting it out!

However, I’m always minded to give credit where its due and I was surprised and pleased to see some fairly robust code under the hood of NTLWorld.co.uk. Now granted, it doesn’t validate and its far from semantic but whomever the design team who work on it are they’re obviously making a big effort to move things in the right direction and that to me is important. I mean, I could’ve blogged about how appallingly unsemantic the code is or bemoaned its inaccessibility but its always struck me that you catch more bees with honey than vinegar.

Or am I being unrealistic? Should we simply take it _as read_ that the bigger players should be making valid, usable, semantic, accessible websites? Should I be giving these guys a bollocking? After all, they do have a fairly large budget (one assumes) and are only constrained by internal deadlines (assuming the design team is in house of course), hell maybe we should all be complaining about the terrible state of the code?

But I think not. I think its right to see the glass as half full rather than half empty on occasions such as these so ‘well done’ NTL and your design team – don’t see this as the end though, see it as the first step towards a better site.

But what do you think? Commend or condemn?

Statement Review Time

11 Jul

Megan has something called a ‘Statement of Need’ or ‘Statement’ for short. In this document is a set of regulations that the LEA (Local Education Authority) must adhere to. When Meg first started school last year we went through a monumental fight (as do all parents of SEN (Special Educational Needs) kids) to get Megan the education we felt would best suit her. Its all documented in here somewhere if you want to have a look but I certainly learnt a few unpleasant things about the Education system as part of that process (did you know that parents of SEN kids have *no right* to attend hearings about their kids that the LEA set up to discuss their inclusion?).

Anyway, as you may also recall, Megan’s two support assistants both left on June 30th so Megan has had to stay at home with us. Now technically, we _could_ have demanded the school meet Megan’s needs as 32.5 hours per week support is specified in her Statement and we fought like utter mad bastards to get that but to be honest, the school have done such a great job with Megan it didn’t even enter our minds. The other thing of course is that Meg needs as much continuity as possible and getting in two people that quickly might’ve been impossible.

However, the school have again performed miracles and managed to get two LSA (Leaning Support Assistants) who both have experience with SEN kids. One started today and the other one starts next Monday. This is great news as it means Megan will have 10 days or so to get to know these people before school breaks up for the Summer and thus she won’t be starting in September to a new classroom with a new schoolteacher and new kids *and* new LSA’s – a situation which would’ve been overwhelming.

Today was also Megan’s Statement Review so I went down to attend that. It was a mostly very positive meeting. Everyone agreed that Megan is a different little girl to the one who started school last September. She joins in with the other kids, she follows a basic session plan, she responds to the instructions of her LSA’s, her PECS work is becoming established and consistent.

However she does have issues concentrating and this is hampering her ability to make more significant progress. Finding something to motivate Meg is difficult as she gets bored very easily. Once she’s done something (swapped a picture for an item for example) she doesn’t see why she should _keep_ doing it. This means its impossible to say with any certainty whether what she’s doing is established and learnt. Our next strategy is to find ways of elongating Megan’s attention span and finding better and more concrete ways of motivating her.

Evidence of Harm List Gets Flakier

10 Jul

Alongside the main players on the Evidence of Harm mail list such as Lujene Clarke and Lenny Schafer are starting to appear some truly fascinating people. It really is becoming quite an education watching this list descend into a fever pit of conspiracy theory, suspicion, paranoia, quasi-religious (and out-and-out religious) hysteria and ravings.

A sure sign of how strong one’s argument is is the quality of its support. In this respect, the EoH list is in increasingly bad shape. Alongside J.B Handley and the illogical Lujene Clarke who believes you can contract Aspergers at age 8 and upwards are some real off-the-wall whackos:

Herman Hugh Fudenberg, M.D.

Fudenberg, who has posted several times on the EoH list is possibly the most tainted supporter EoH/Mercury/Thimerosal has.

In November 1995, the South Carolina medical board found Fudenberg “guilty of engaging in dishonorable, unethical, or unprofessional conduct,” fined him $10,000, ordered him to surrender his license to prescribe controlled substances (narcotic drugs), and placed his license on indefinite suspension. The Board’s order, shown below, said that he could apply for probationary status if he underwent a neuropsychiatric examination and was judged capable of practicing medicine safely. In March 1996, he was permitted to resume practice under terms of probation that did not permit him to prescribe any drugs. His license expired in January 2004; and in March 2004, he applied to have it reinstated. However, after a hearing in which the Board considered a neuropsychatric report issued in 2003, Fudenberg agreed to remain in a “retired” status and withdrew his application for reactivation of his license. The South Carolina board’s Web site lists his license as “lapsed.”

Casewatch.

Fudenberg is a big mate of Andrew Wakefield:

Andrew Wakefield had filed patent claims for a vaccine and a possible cure for autism, based on a fringe theory of “transfer factors”. His collaborator and “co-inventor” was Hugh Fudenberg, who claimed in a 2004 interview with Brian Deer to cure autistic children with his own bone marrow.

Brian Deer.

There are, of course, plenty of genuinely disturbing kooks on the EoH list. Lenny Schafer, for example who doesn’t care if he’s right or wrong – its become a political battle for him:

The message here is that the autism-mercury cabal is committed to winning – even if they are wrong! They have clearly abandoned any pretense of scientific inquiry and are striving for a political solution.

Prometheus.

Everything that the cabal disagrees with is never argued with. Its simply shunted aside by either referring to it as written by ‘autism holocaust deniers’ or ‘Big Pharma’. In this way, unpalatable truths are casually tossed aside. I’d really really like to know how many EoH listers privately go back and read up on this stuff. I know a lot of them read this blog for example (you can deny it but yours and Yahoo’s referrer logs cannot lie my friends) and if you’re one of these people, please try and see the science past your conspiracy theory. I’ve no doubt US (and UK) Pharma companies act badly on occasion but you have moved the goalposts way beyond ‘Big Pharma’ culpability. Ask yourself if you really believe that everyone from your President right down to _and including_ your local family Doctor are all in collusion. Because thats what it would take – the collusion of just about every health care professional in your country – to keep this conspiracy alive.

Terrorism – Yawn.

7 Jul

I don’t live in London but half of my family live around London and a lot of my friends do too. A lot of people I don’t know too well but respect the shit out of also live and/or work there too as well as a whole load of people I don’t know and have never/will never meet. It seems somebody(ies) take exception to that and felt that today was the opportune moment to try and remove them from existence. In approaching (so far) 40 cases, they succeeded.

I’ve spoken to the vast majority of people I care about who I know were in London today, including a close friend who I know gets the bus on the Marble Arch route that the decimated double decker takes so, with a few exceptions I know my people are safe.

Personally I couldn’t give a shit which of the self-centered moronic groups failed to impress anyone today. Possibly it was Osama and his terribly amusing upper-middle class revolution. Or maybe it was the ‘real’ IRA, or ETA, or anyone of a number of other human scum, does anyone really care? I don’t. I don’t think the British people do. You lack the balls to argue your case so resort to attacking civilians. This demonstrates both the lack of your intellect and the weakness of your position.

Whoever you are you need to face this: you took your best shot and came up woefully short. You attacked a country that single handedly repelled the might of the Luftwaffe 60 years ago and who not only prevented an invasion but who took the fight to Europe. What will happen next is this: we’ll honour and celebrate the lives of our dead, then we’ll bury them and then we’ll go on with our lives without worrying about you or your inadequacies. We lived through the best the IRA had to offer for over 30 years. Whatever made you think anything _you_ could do would impress us?

We’ll be back up and running by next week, moaning about work, getting pissed at the weekends, taking the piss out of the French, sneering at the idea of being productive and not giving a shit what you or anyone else thinks. We’ll have 40 or so more names to add to honour at days of national celebration and thats that. And thats the thing you hate the most isn’t it? Being ignored? You desire fear and legitimacy right? Well sorry, we don’t really do that here. All you’ve really done is united us in a way we haven’t been united for quite a long time. Now shhhh, go play somewhere else and leave the democracy for the grown ups.

David Kirby: Impartial Journalist.

7 Jul

David Kirby’s superb, even-handed account of the investigation into this ongoing, high-stakes controversy is fascinating and compelling

Bernard Rimland, Autism Research Institute; Autism Society of America

Kirby doesn’t offer his own verdict on the debate…

Polly Maurice, The New York Times Book Review

Walking the middle line, Kirby’s book remains one of the most thoroughly researched accounts of the thimerosal controversy thus far…

Publishers Weekly (Starred Review) ***

Evidence of Harm explores both sides of this controversy…

All quotes available on EOH.

So, according to himself, David Kirby is a thorough, impartial, dedicated boy-scout of a reporter. He offers an ‘even handed account’ that ‘doesn’t offer his own verdict’ and which ‘walks the middle line’ and thus explores ‘both sides’ of the controversy.

All these things are what you would expect from a journalist with some amount of ethics – after all, what is journalism that is one sided but fancily spun propaganda? – and so it must be something of a relief to most that such an important issue as the cause of autism is entrusted to such a thorough and ethical journalist.

So it comes as something of a surprise (well, no, it doesn’t really) to find that actually, despite good PR to the contrary, David Kirby is neither ethical nor impartial in his role as a journalist. He is in fact simply a partisan hack.

David Kirby’s website is ‘designed’ (and speaking as a web designer myself I use that phrase in its loosest possible sense) by ‘Wendys Webs‘. Interested to see who had done such an, um, _interesting_ design job on Kirby’s site, I performed a WHOIS on the domain and the owner was revealed as one Wendy A Fournier.

‘Well, so what?’ , I hear you ask. For an answer to that question you’ll need to head on over to the National Autism Association but make sure to use Internet Explorer as whoever (ahem) designed and built their website made it unworkable in Gecko based browsers.

And there on the Listed Directors page you will find Wendy Fournier – the President of the National Autism Association. Lets read her brief biog:

When Wendy’s youngest daughter was diagnosed with autism, doctors gave her little to hope for. She began to research treatment options via the internet. Here she discovered that there is indeed a great deal of hope. Hope comes in the form of biomedical treatments, therapies, enlightened medical professionals, a few brave politicians and an amazing group of parents around the world who are fighting for their children.

Aha, biomedical treatments, therapies, enlightened medics and brave politicos. Sound familiar at all? These are all code for ‘mercury causes autism’. Here’s how impartial Wendy Fournier is:

Wendy Fournier (Portsmouth, RI), parent and president of NAA, asks [referring to Mercury/Thimerosal], “Why would Shih, Johnson or any parent deliberately give their child a substance that’s label contains a Jolly-Roger symbol?”

Yahoo.

…according to Aventis, removal of Thimerosal from the flu shots may present vaccine shortages and a higher risk for a flu outbreak. Parent Wendy Fournier says when you look at all the information, you quickly realize it’s a weak excuse. “They’ve had years to create mercury-free batches. Thimerosal is cheap — that’s why they want it in there,” she says.

Royalrife

So, David Kirby’s (who offers an ‘even handed account’ that ‘doesn’t offer his own verdict’ and which ‘walks the middle line’ and thus explores ‘both sides’ of the controversy remember) website is designed and built by someone who blames mercury for autism. How very impartial your propaganda is turning out to be Mr Kirby.

I’m also aware that at some point in the past the domain evidenceofharm.com was listed as being owned by SafeMinds. These details have been changed now but it is another nail in the coffin of Kirby’s impartiality. I wonder how much he was paid by Safeminds for his propaganda and I wonder how much of that came from charitable contributions?

Tom Cruise Reminds Me Of Anti Thimerosal Brigade

6 Jul

Tom Cruise recently went on the Today Show (a US politics/lifestyle type show) to big up The War Of The Worlds. He and the host ended up discussing Tom’s bizarre atitude to Psychiatry (which he claims is a psuedoscience) and Scientology (which is obviously a much more rational thing to believe in!). Apparently Tom ‘lost the plot’ a bit and started raving.

I read a transcript of the interview (which I’ll link to in a minute) and its true. He’s almost frothing at the mouth. But what struck me the most was the eerie similarity in attitude between Cruise and the ant-vax/thimerosal crowd. All those people like Lujene Clarke, David Kirby, SafeMinds et al share the same beliefs as Cruise really: all science is a sham and they are the sole holders of (fanfare please) The Real Truth. They ignore reason, they ignore science, they alter and cherry-pick quotes to suit their agenda and they claim that they and only they are ‘well informed’ on the issue.

Its a dangerous arrogance that, just like Cruise, is short (sorry) on logic and big on bullshit and self-serving prophecy. Go have a read of the Cruise transcript and you’ll see what I mean immediately.

The Design Of Amazon: Happy 10th Anniversary!

3 Jul

On the tenth anniversary of Amazon being an online retailer (well, the actual date is July 16th but what the hell) I thought it might be fun to take a look at why they’re so successful in design terms.

Lets be honest. For most designers, Amazon ain’t too pretty. In fact it looks grim in places. The code is also an unsemantic mess of nested tables and inappropriate code choices. These two things alone are enough to make any standards based designer grit his or her teeth. It also won’t validate, makes no effort to be accessible and makes lots of schoolboy coding errors.

But it works brilliantly. Its the embodiment of usability and a role model for how effective Information Architecture can be when researched and used well. The design elements it does use are used well, its fast loading and a joy to navigate.

So lets have a look at a typical Amazon product page (warning: 162kb image) at some of the things Amazon does right.Firstly there’s the overall layout of the page. Everything is structured in order of importance _to the user_ from top to bottom (most important at top, least at bottom).

Most importantly of all we have our main navigation area. The (clickable, of course) logo is left aligned in the traditional manner – the area that studies indicate users look first – thus ensuring the user knows exactly where they are and who they’re dealing with. These things add to the users comfort level. Next to the logo is the main site overview personal options – your account, your wish list, your basket, how you get help – which again reassures the user that _they_ are at the centre of the process.

Next is the site navigation. The cream bar is top level section areas and the blue bar is secondary level drill-down options. Note the second cream bar under the blue bar which carries Search options but carries on the ‘navigation’ colours of cream and blue (blue of course being a good choice as it mirrors the colour a user traditionally associates with progress and action – the blue of an unstyled hyperlink).

Underneath that we have one of things that Amazon does so well – internal advertising. Bright red to reflect the traditional colours of a UK Sale and note that the word ‘sale’ is the biggest typeface on the whole page. There’s no way you can miss that. Especially as its incorporated well with the rest of the page rather than floating about as an ineffectual banner.

Next is the hub of this page template – the product detail area. Everything about this area reeks of highly effective information architecture and copy writing. Look how _sparse_ the details are. Not a thing is wasted and yet not a significant details is overlooked. In that relatively small area you get price, terms and conditions, availability, the option to purchase a second hand copy, release date, the number of items associated with the product, the label, ASIN and catalogue numbers, the option to add the product to your shopping basket and/or wish list, any associated special offers, how Amazon customers rate the product, the opportunity to rate the product in order to hone your personal recommendations (Amazon appreciates latent semantics as much as Google!) and , oh yeah, a picture of the product itself.

Immediately below this area Amazon offer a textbook definition of the idea of user goals supporting business goals. Of course Amazon want you to spend more money so they offer a great way to get you to part with more cash but in a way thats so damn useful you don’t really mind – the famous ‘Customers who like this may also like’ areas. The first, interestingly, are links to offsite selling areas (Ticketmaster and Yahoo in this example page) but underneath the Track Listing (note that these two areas buttress the all-important Track Listing which is something most people want to see and thus they get these two areas in their viewing area too) is the ‘customers who bough this also bought’ which is a genius piece of viral marketing – allowing your customers to dictate the fashion will always bring more sales than dictating fashion _to_ the customer.

Next up we have customer reviews. Something of a double edged sword I’d guess Amazon keep these as they enhance their reputation as transparent and actively _useful_ to customers. Thats worth more than any one negative review can potentially lose them in revenue. A brand associated with implicit trust _and_ usefullness is worth its weight in gold.

After this is sectional bottom nav for long pages like these thus preventing users the necessity of scrolling back up and maybe getting bored in the process.

Last on the page is the stuff that Amazon correctly judges its users will need least often. Its not trying to hide the process of returning things if you need to but Amazon realise that such an eventuality will be a relative rarity for any one customer and so they place that information where its fairly easy to find but doesn’t impinge on the essential page activities of reading about and buying product.

All thats said I do find it disappointing that Amazon’s site isn’t particularly accessible and that they use non-validating, non-semantic code. These are things that elevate great sites into superlative sites. Amazon would save money on bandwidth, have even better download times and have a perfect base for any future re branding – why stop with the job only 50% done Amazon? Why not start the next ten years with a substantial under-the-bonnet change and reap the benefits enjoyed by your equally large contemporaries like Multimap, Yahoo and MSN?

The Autistics Are Coming!! Oh Dear God!!!

3 Jul

If you search for anything related to autism you always come across parent/family led groups who describe autism in increasingly demonic terms. It used to be that someone was simply autistic but nowadays we have the ‘hell’ of autism or the ‘abyss’ of autism being used to attach negative emotion to autism.

Nowhere is this more apparent than when social commenters talk about the autism epidemic. This ‘epidemic’ revolves around the idea that 1 in 166 kids in America are autistic and of course, epidemic is just another emotive word tool designed to elicit the maximum amount of scare-mongering from people.

Every so often the ‘ante’ is upped and another emotive word tool is used that is more fear-mongering than before. One such idiotic phrase coined after 26th Dec 2004 was ‘autism tsunami’. In a breath taking lack of respect for the 200,000 dead and an even more breath taking lack of respect for autistics themselves, autism was portrayed as a phenomenom equal to that which killed nearly a quarter of a million people. I wonder how the families of those who lost loved ones on Boxing Day felt about that comparison?

Very recently that ante has been upped again. From terrible yet local natural disasters to pure human evil. In a mind bogglingly tasteless recent Schafer Autism Report, the man himself said that:

Autism holocaust deniers lack the science.

This was made in reference to the Danish study that debunked the link between Thimerosal and autism. I haven’t read the article itself but this incredible reference left me open mouthed. Apparently we who follow the science on this issue are akin to holocaust deniers. Thats right – we’re apparently the same as some snivelling little shit with a skinhead, Docs and a swastika tattoed on their imbecilic skulls. Wow, thanks Lenny. I can see how you could easily draw a comparion between those who don’t believe you’re right about the thimerosal/autism link and the Nazi genocide of over 6 million people. Jesus fucking Christ man – get a sense of perspective. How utterly disrespectful to the memories of those who died in the Second World War than to have some jumped up little man sully the concept of free speech with appalling comparisons to those people who veterans all over the free world died to save us all from.

But then we’re dealing with the same loose affiliation of people who label autistic people as mad or fakers or who think their best chance for a cure lies with a quack with some sun cream that cures autism, old age and cancer.

Oh and the autism epidemic? I think you might want to have a read of this.

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