Left Brain Right Brain

Another day and another ‘cure’ group springs up. This one is called Generation Rescue and centres its efforts around the removal of Mercury.

EDIT: This edit is in place for all the people coming over from the Evidence of Harm mail list.

I become aware of your groups existence after checking my referral logs and finding a reference to this blog entry on the EoH mail list. On that group I was referred to as an ‘idiot’ and ‘stupid’ and characterised as a bad parent because of my belief that Generation Rescue were wrong to state that autism was mercury poisoning.

I was very annoyed by the misrepresentation of my beliefs and responded in kind. In hindsight it would’ve been better to calm down first, then respond. Also, thanks to the 7 or 8 people from EoH list who’ve mailed me privately to express their suspicions that I’m right or who’ve been willing to conduct the debate on a more sensible, adult level. Anyone and everyone is free to post here but if anyone gets openly abusive then an abuse mail will be sent to your ISP and your IP will be banned from here.

They claim that its the Mercury in our everyday lives that has caused autism and that its removal from the body will cure autism.

They have a big section on facts and claim support from thousands of parents/doctors etc etc. It goes without saying of course that all the Doctors who suppoprt tham are, according to them ‘world renowned’ or ‘experts in their field’.

However, they are wrong. If they were right then there would be no genetic evidence that autism exists. This is not to say that they are wrong about how bad Mercury is as they are not. Its also not to say that some autistics may be suffering from Mercury poisoning, as they may well be. What they fail to say though is that its possible to suffer Mercury poisoning and not be autistic. They fail to explain the concept of comorbidity and what it means for their argument.

Some autistic people have comorbid conditions such as ADHD, Tourettes etc. If an autistic person is proven to be suffering from Mercury poisoning and subsequently treated, they have been successfuly treated and cured of their poisoning – not their autism.

A telling point in the argument used by these kind of groups is the convoluted phrases used such as:

When you know cause, you can focus on cure.Thousands of parents are curing their children by removing the mercury from their children’s bodies. We want you, the parent, to know the truth.

Note how they carefully omit what they’re curing. The truth is, the fact is that they are not curing autism – it is incurable as it is not a disease – what they are curing is Mercury poisoning. A good thing of course, but very misleadingly described.

However, where groups like this get very dangerous is when they make claims such as:

There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning.

Firstly, they are incorrect to infer no genetic basis for autism, there are freely available stories that establish genetic evidence for autism all over the internet. The one linked to above is just one single report. Feel free to search Google or Yahoo for hundreds of other reports. Claims like this do the actual autism movement a grave disservice in their irresponsible dissemination of misinformation. Secondly they claim baldly that autism is mercury poisoning with no evidence whatsoever to back up that claim. Let me be clear: there may be evidence that some autistics have mercury poisoning and these people may respond very well to the subsequent treatment, but this treatment is not a cure for autism. Mercury poisoning, at best, is a comorbid condition of some autistics.

It worries me so much that this kind of spin-doctoring of the facts goes on. Not only is entirely disrespectful to allude to a whole subsection of society as the result of an epidemic, or to be a disease, or to need a cure it also puts false hope into those parents who are desperately trying to help their children. Not help them to be ‘cured’ but help them to find a place in society being proud of who and what they are. Can you imagine how it must feel to be constantly told that your existence is nothing more than a disease?

Autistics do not need, nor will there ever be, a cure. What they need from us is our respect and our help. By all means intervene in your childrens lives to find a way to alleviate their debilitating comorbid conditions but if you’re after a cure you need to know that there is none and that by doing so you are giving your child the message that who they are is wrong.

Before Xmas, I wrote a post about how autistics use interfaces. I noted in that article that the things I had seen so far couldn’t be representative as they were only what I haad observed in my daughter Megan.

To that end I have recently been chatting online to a couple of groups of people who are autistic in order to try and get a sense of how we as web designers could better meet their needs and to develop a rounder picture of the nature of the interface related problems an autistic may face.

Firstly some definitions. The people I have most recently spoken to are mainly Aspergers (please note: they do not have Aspergers – ‘having’ implies illness/disease neither of which Aspergers is), whilst some (and my daughter) are classically autistic. There are differences in these two states of being but the basic underlying issues are the same – they are both Autistic Spectrum Disorders which are rooted in the same set of root difference.

During our discussions, the main issues raised were:

1. Short Line length
2. Colour combinations (light on dark is very bad)
3. Imagery/Animation
4. White space (rivers of white)
5. Small text blocks
6. Backgrounds must be solid, not patterned
7. Single, long pages broken into small sections rather than lots of individual pages

You have to be careful in these circumstances to differentiate between personal preference and a genuine trait for all people who follow a certain diagnostic criteria. The above list is comprised of things that were mentioned by more than 2 different people.

First of all is my piece of humble pie – imagery and animation. Autistic people have no great preference for graphical interfaces with a few indicating a definite preference for textual interfaces and the majority indicating they are happy with either. At this time then I’d say that my observations of my daughter and subsequent conclusions are more relevant to her age rather than her autism – kids like pictures and animation.

Colour combinations for autistics can be tricky. Autism is heavily based around sensory difference and hence some autistics actually ‘hear’ colour (or smell sounds etc etc) and hence some colour combinations can in some circumstances be actually physically painful to some autistics. Unfortunately there doesn’t seem to be any one colour combination that is espcially bad (or good) as, like all of us, autistics have personal preferences regarding colours. I do think though that more research in this area may reveal an autisitc ‘swatch’. This would require a more structured program of investigation though.

Autistics by and large follow NT (neurotypical) preferences in the area of line length, hence the following would be applicable to autistics as well:

Both children and adults had definite preferences. No adults chose the full length as their favorite. Most chose medium length, and narrow length was not far behind. For the children the full length was also the least preferred, with a strong preference for the narrow length.

http://www.humanfactors.com/downloads/feb03.asp

Autstics indicated a definite preference for strong, wide margins preferably in white to any areas where there was textual content and textual content on one subject should be on one (long if neccessary) page broken into small paragrpahs rather than long unbroken blocks of text spread across many pages.

Backgrounds should be solid – even a slight pattern in a background causes the page to ‘swim’ badly – remember, autism is primarily a perceptual and emotional disorder.

One of the most interesting aspects of my discussions with autistic people is their opinions on branding. Simply, they all acknowledge its there but make no emotional link with it at all. In a lot of cases autistic users find it distracting and puzzling. Especially where (for example) a logo carries a device as well as the name of the company. Most autistics struggle with metaphor and seem to find it offputting in this setting.

So what can we do to make our autistic users browsing easier? Firstly it seems we can apply a lot of the rules of good design backed up with both WCAG (although AAA may not be possible bearing the desire for smaller line length and hence a probable fixed width) and standards compliant markup. The two areas of potential difficulty that I think need more investigation are branding and developing an autistic swatch (swatches). It should be straightfoward to provide technical solutions to these issues using CSS but firstly we need to further develop these two areas with more focussed investigation.

Superb idea over at Benjamin Adam.

The May 1st reboot is usually swamped by Flash designs. Wouldn’t it be nice to have some standarsd based CSS designs in there? I thought so, so I signed up. Better get working on some concepts after the next issue of Project: New I guess!

I posted here recently that Dean had made comment on the IE blog that they would soon be addressing once and for all what the new version of IE (IE7) would do in terms of supporting web standards, in particular CSS 2 and XHTML 1.0.

There’s been nothing explicitly said so far but there have been one or two just-below-the-surface mutterings in slightly related postings.

Today, for example, Dean made a post about the new Netscape beta and paid particular attention to its ability to switch rendering engines which he thinks is a good thing.

Here’s his closing statement:

I look forward to trying the Netscape beta and having pages work the way they do in IE. I’m happy to see another browser built on top of the IE platform to go along with NetCaptor, Maxthon,

Now, is it just me being over-paranoid or does the phrase I look forward to trying the Netscape beta and having pages work the way they do in IE. sound worrying in relation to what a new IE might do to anyone else? It read to me like a warning shot that this dual-rendering ability was going to absolve the IE team from making their rendering engine conform to web standards. At the very least its a disappointing solution on Netscapes part to cater for a browser that doesn’t work very well. At worst it could be the excuse the IE team need to not fix the IE rendering engine.

Or am I being overly paranoid here?

There exists a group called CAN (Cure Autism Now) whose primary aim must be fairly self evident from their name!

They’ve recently started a section on their site where parents can upload images of their autistic kids with a little bit of text attached. here’s a sample.

Aaron is the light of our life, we are so lucky to have him.

Huh? They are lucky to have him? Then why do they want to ‘cure’ him? Seems a more accurate statement would’ve been:

‘We are lucky to have him’ so we want you to donate money to CAN so we can help make sure people like him aren’t born in future.

I’d rather see parents channelling their efforts into raising awareness and tolerance. Not this. This, to me, verges on eugenics.

First, take note, this isn’t about a method for how autistics learn but more about the differences in the difficulty of learning for both NT and autistic people.

Michelle Dawson recently pointed me to a thread where a discussion was taking place on the nature of ‘learnability’ (is that even a word?). And an NT parent asked Michelle for advice on how to help her child who was self-harming. As part of her incredibly helpful answer she linked to an essay on autistics.org on how autistics aquire (and maintain) skills. Its a truly fascinating piece of writing and an insight on how hard autistics fight to try and conform to how the general public feels they should behave.

Some autistic people…. have to do things like decide to look at something, see a garble of shapes, start differentiating individual shapes, focus in on one of the shapes, figure out that the shape is a Thing, figure out what the Thing is, and figure out what the Thing does. And that’s all just to get to the bare minimum of what NTs do automatically, and it’s leaving out things like differentiating one sense from another and doing this in a non-passive setting.

As Megan’s parents we’re aware of how hard she finds certain things but we also felt, as most NT’s do, that once a skill is learnt it stays learnt. Thats why when Megan forgets to use the toilet sometimes its frustrating for us – but we forget about how difficult it is for Megan to keep up the semblance of normality that even beginnig to make such a decision entails.

Back to Michelle’s post, she says:

Most autistics are very, very patient. We will communicate a basic need ten, twelve times. This may happen over a long span of time, as the basic need we are trying to communicate gets more and more pressing and becomes complicated by more recent difficulties. At some point, we will blow up…….This then becomes the *one* behaviour everyone notices (and also the one behaviour a behaviour analyst will analyze). Then everyone looks for what happened just right before this unacceptable and unexpected (where on earth did that come from??) behaviour. Then they decide what the kid wants, or what he means, according to the one and only behaviour they have noticed. They then work to have the child communicate appropriately what they have decided the child was communicating at the point the child blew up.

We are sometimes guilty of this – you can sometimes see the frustration on Megans face as she tries to let us know what it is she wants and its the singe most helpless feeling in the world to see your child trying to tell you something important to her and you not being able to decipher it. Sometimes we have to end up guessing and its wrong a lot of the time and Megans has a tantrum borne out of pure frustration. Its our biggest wish for Megan that we or her could find a way to each other so we can meet her needs better. She has speech therapy and is beginning to use a pictoral timetable at school and to a lesser extent at home but other than that – its guesswork.

So, thats our holy grail. Its also a large part of the reason why I started listening to autistics in these matters as oppose to ‘experts’.

At the end of last month, Martin was wondering what happened to old designs:

What also happens to all the great designs that last just a while before their owner get an itchy mouse finger and decides to redesign. Some of these sites deserve to be seen a little more than they are. There are some sites that seem to have changed everytime I go back – and yes they are more often than not an improvement. But what happens to the old design?

Its a good question. And so, in that spirit I’m going to release an old design into the wild. The site I designed it for suffered from that most pernicious of designer problems: never really getting round to it.

The design is live here for you to have a look at and decide if its something you fancy. I ain’t going to make anyone jump through hoops for it – email me and the first person to get through gets it. One proviso: No hate sites or sites that promote intolerance can be used with this design. If I check on what you’ve done with it and there’s a hate site up there I’ll feel obliged to tell you to make the design available for someone else to use. Anything else (including porn, blogs, adult humour, whatever) is fine by me. Its valid XHTML, CSS and passes A/508 compliance. Integrated style sheet switcher included but I’m afraid I’ve misplaced all my PSD’s – the main image is from stock.xchng though so you’ll have no trouble mocking it up again.

First up Absolution Gap by Alistair Reynolds.

This is part 3 of the Revelation Space trilogy and thus the concluding volume in what has been a truly epic Space Opera in the grand tradition of Sci-Fi. It wraps the existing storyline up very neatly, gives us a few nasty surprises along the way (but no spoilers here!) and introduces another level of desirable complexity on what was already a pleasingly complex (but not overly complex) storyline. If you like your Sci-Fi grand, epic and story-driven then this series is for you.

Next up is The Way The Crow Flies by Anne-Marie McDonald (please note: link goes to Amazon.com not .co.uk).

This is an exceptionally well written book revolving around (at first) eight year old Madeline whos Dad (a Canadian Air Force officer) has just been posted back to Canada. By turns funny, touching, horrifying and tense this is a book that reminded me very much of Peter Straubs Koko which is another novel with really well drawn characters and a sad yet always engaging plot.

I’ve never read anything by the author before but I’ll be looking out for her back catalogue from now on!

After talking to the wise people on Autistics.org and Aspies For Freedom who have the dual benefit of both being on the spectrum themselves and in some cases having kids about Megans age on the spectrum, we’ve decided to give Melatonin a try.

Melatonin is not so much a drug as it is a hormone. Its produced naturally in the body and regulates sleep in all of us. We have lots as kids and production tapers off as we get older.

Its thought that up to 80% of kids with autism over-secrete Melatonin…

triggering a chain of hormonal and biochemical reactions affecting opioids and neurotransmitters that act on the brain. Yet some studies have observed that nightly melatonin supplementation in children with autism and other neurological and developmental disorders appears to improve sleep patterns in up to 80% of these children.

http://www.gsdl.com/home/assessments/finddisease/autism/melatonin.html

Sounds odd doesn’t it? That increasing Melatonin supply to an apparently over-secreted brain should help it, but it seems to work well for lots of autistic kids.

So, we’re giving it a try. Megan doesn’t really respond much to the Vallergan she’s been on since the age of 3 any more so we thought it was time. Besides, I’m much happier giving her something that is produced naturally in the body and that the body is wired up to deal with than giving her something that isn’t produced naturally.

Guess we’ll see how it goes.

Keep your eye on the IE Blog. Dean has said that:

I wanted to recap the main themes I read in the comments and use them as a roadmap for the topics that we will post about over the next few weeks….snip…. 3. Standards, standards, standards… say something!…snip…

So, keep your eyes peeled because we’re going to find out soon, one way or the other!