Left Brain Right Brain

Every so often I get emails (as well as blog comments) about my stance on a cure for autism. Here’s a fairly typical example (although its way more polite than most!):

You say it is find (sic) to be autistic and we should seek no cure.So you are happy with a child that smears faeces all over the walls and attacks other children. Bites her mother so badly that her arms are covered in bruises. Cannot be taken outside without two adults controlling her. Where some autistic children cry all the time and look in so much distress. Other autistic children have ill health with high tempertures, excissive (sic) thirst, rashes, bowel problems and the sad thing is parents are blamed for their childs condition.

Its very worrying that so many people (family members, friends and even ‘professionals’) have no understanding of the concept of comorbidity as it relates to autism. Comorbidity is:

[E]xisting simultaneously with and usually independently of another medical condition.

So, there are somethings that autism _is_ and some things that autism _isn’t_ but which may be comorbid to autism. Such as behavioural issues (resulting in biting, hair pulling, smacking, fecal smearing etc), bowel problems, excessive thirst etc etc. The *only things* that can be said to be autistic are those found on the diagnostic criteria. Anything not in the diagnostic criteria is comorbid.

So where does that leave us? Hopefully it demonstrates that I don’t find any of the comorbid conditions my correspondent listed as acceptable. I believe interventions in all instances should be rigorously pursued. Their treatment will not, however, impact in any way on the fact of the child’s autism.

No one I know in the Neurodiversity/autistic pride movement says that autistics do not require interventions or help in some circumstances. One of the founders of AspiesForFreedom regularly comments (not that I can find any to link to! Arggh!!) that he’ll always be grateful for his Speech Therapy.

There is a monumental difference between curing autism and treating/intervening in certain comorbid (and even non associative) conditions. One seeks the total eradication of self. The other aims to help the individual whilst preserving their right to be who they are.

*Update!*

Tesla Coyle makes a vital point in the comments below. I want to repeat it here so its not missed by anyone:

IF the kid needed some sort of behavioral consequences to get him to stop biting, that should be reasonable, but first find out if he trying to “tell” you something important, like he’s terrified.

Introduction

Over the last few days I’ve had a flurry of activity in the comments sections of some of my older posts regarding mercury and Rashid Buttar in particular. Most of the commenter’s believe that I am being very unfair to Dr Buttar and am not taking responsibility for my daughters biomedical needs (yes, that old chestnut again). Here’s a few choice quotes:

I am so very grateful that my daughter and son-in-law were dedicated from the very beginning to find a cure for Gavin. It has been a long hard journey and well worth the effort!! And Gavin is not the only recovering autistic child. There are lots of others. With your atitude, Megan will not be one of them and she and her grandmother will most likely miss out on that joy! Such a shame.

In my opinon, by attacking this problem with just therapy, and supplements and not by chelation to remove the Mercury and the other heavy metals is giving your child nothing more than a bandaid …you have left your child in a lonely austic world that keeps him isolated from his family and loved ones.

Hey Kev, do you have a Bill of Rights for The Autism Movement? I think that the first ammendment in your Bill of Rights should be, freedom of speech! Now that’s sarcasm!

Your dead wrong about Dr. Buttar and the children of the parents that listen to you are the ones that are really being banned! Banned from a typical life that is available through what you label as quackery. They will not benefit from mommys with hairy armpits and daddys with ponytails that like to get all wrapped up in movements.

NONE OF HIS TREATMENTS WERE DONE ON A WHIM. They were and still are being done responsibly. And Gavin’s life has changed dramatically from the age of 2 to the present age of 7 next month, FOR THE BETTER! [ed – thats right, this poor kid had been ‘treated’ for 5 years and the family thought that was normal!]

You state what yours are, but truly I think there is more to the story regarding yours. I would trust you as much as I would trust the generationrescue people. Which is not a lot.

Who the hell are you really?????? Do you really have a child with autism????

There’s a lot of heat and not much light generated in discussions like these. We all have our beliefs and entrenched positions and I’ll be the first to admit, I give as good as I get in situations like this. I’m not one for being polite and humble when someone starts ranting all over my blog.

Beliefs vs Research

If you read through the comments in their entirety you start to notice patterns in thinking and behaviour from a lot (if not all) of these people – the threads themselves move and resolve themselves in a consistent fashion. People such as the above *believe*. They don’t look at the science as they believe it is tainted, they don’t think the situation through in a critical way as they’re caught up in the emotion of the situation. I can totally empathise with that as I used to be exactly the same. Here’s a quote from me in my first ever post to this blog.

Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab. I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

Looking back on that now it seems an almost alien time for me. I knew nothing about autism or autistics and I knew nothing about the ways of thinking logically and examining carefully *all* the variables (or as many as possible) in any given situation. Its only as I’ve increased my exposure to both scientific evidence and actually talked to a lot of autistics that I’ve learned that applying critical thinking to the theories regarding autism is vital. Take the above quote from me: I talk about how ill Megan was that night and she was but the only connection between her illness and the DTP jab was the one we made in our minds. Subsequent examinations of our daughter revealed no damage at all. I also talked about ‘knowing something was different’ but really, I didn’t. I’d already decided that the DTP jab was the culprit and my judgement regarding Megan’s ‘difference’ was then formed retroactively, based on that erroneous assumption.

After that realisation I decided that we needed to try and put Megan’s needs first and not our own selfish need to find a cause – Megan was/is autistic and our energies needed to be redirected into finding a cause into finding a way to intervene in the situations that cause her problems.

We were firmly in that pattern and it was only gradually, and only after abandoning the *belief* system in favour of the *research* system, that we started to see significant changes in the areas Megan needed help in. I’m not entirely comfortable discussing private medical issues on a public blog but suffice it to say Megan’s main area of concern in the triad of differences were social, emotional and communicative. But these are ASD, these are not however, specific problems. Specific problems can and should be targeted. A specific problem based on Megan’s communication problems is getting her to communicate so _thats_ what we work on. We don’t try and remove the autism as it can’t be removed. If I could offer one piece of advice to parents with newly diagnosed kids its this – abandon your *beliefs* in favour of *impartial research*, identify the *specific problems*, not the *general condition* and formulate interventions to address those specific problems. In that whole process however, I freely recognise that this most difficult part is abandoning belief in favour of research.

Its difficult as it means that you have to apply rigorous scientific criteria to everything that touches your children’s lives. This means:

1- Is it logical?
2 – Is it peer reviewed?
3 – Has it been published in a respected Journal?
4 – Is it safe?
5 – What are the known and suspected side effects?

Why are these things important? Because if a treatment has not been tested or peer reviewed or had data about it published then it is *an unknown quantity*. It is everybodies free choice to use whatever they feel comfortable about using but I think it is irresponsible for me as a parent to use a treatment that little to nothing is known about. I also feel its my duty as the parent of an autistic to inform other parents of autistics of anything – either positive or negative – I’ve personally found out about a particular person, treatment or system.

Its also interesting (and a little disturbing) to see so much odd belief _about_ autism. Some people believe that stimming is painful for autistics! Some people believe that bowel and digestive problems are symptoms of autism. Some people believe that the symptoms of mercury poisoning and autism are the same. I find it bewildering how anyone could believe any of these things as they are simply not true. But it all comes back to the power of *belief* over *research*. Whilst these people believe they have thoroughly researched the issues, a lot of the time they haven’t. What they actually do is research until they find a theory that fits with their own beliefs. Again, I can understand why thats an attractive thing to do but its simply flawed logic. if you want to be in the best position to know what stands the best chance of helping in a given situation you must abandon your beliefs and be prepared to look objectively at the science. You must accept when studies you thought were sound were not and you must accept that a study without peer review or a treatment without published data is useless and potentially very very dangerous.

The Ethics

A lot of comments lately have found humour in the idea of a global autism rights movement. They seem to feel that autism is all about children. they also seem to feel that the autistic rights movement doesn’t want help or interventions where they are needed. Again, this is down to belief over research. A lot of families may read the odd book by Temple Grandin and assume they know everything about how autistics think and feel when nothing could be further from the truth. Reading books by Temple Grandin gives you an idea of how Temple Grandin thinks and feels. Nothing more.

I find it worrying that so many parents, grandparents, godparents and siblings are so unprepared to accept the fact that their son/nephew/grandson/brother is autistic and will be for life. I find it worrying that they don’t do more to research what its like to be an adult autistic and most of all I find it incredibly worrying that to them the idea of autistics having rights is a source of humour.

The Enemy

Autism is not your enemy. It is not anyone’s enemy. It simply is. The comorbid conditions that sometimes occur in some autistics such as ADHD, Tourettes, Irlen Syndrome, lack of speech/communication, etc are all situations in which we as family members can and should intervene. The nature of that intervention however is vital. An emotive belief based response such as Chelation, crystal healing or any of the other myriad of ‘cures’ that exist won’t help at all. All the video recordings of ‘progress’ in the world don’t change that – these aren’t evidence, they are anecdotes. They don’t take any other variables into account and they aren’t undertaken in scientifically rigorous environments. If you make the choice to go ahead with these things anyway then thats your choice. All I’d ask is that you be honest with yourself about the effects these things really have. If a treatment you are trying has lasted 5 years can you really say that its working? How do you know its not just down to child development?

When full scale attacks are launched on autism, then to me that equatable to launching full scale attacks on my daughter and my friends. When people talk about curing autism I see that in terms of the removal of the person my daughter is. If you remove the autism you remove my daughter. Thats unacceptable to me.

Last month I posted and documented an interesting way of using a combination of MagpieRSS and AJAX technology to serve up remote RSS feeds to your own site. Since then I’ve come across a few posts from others expressing concern about accessibility and DOM related scripting and wanted to redefine the code somewhat to make the markup a lot cleaner and more accessible.

Enter Behaviour from Ben Nolan which I came across whilst searching for ways to make AJAX markup cleaner.

The Problem

In my previous example I had this:

Dredge


Which is not very accessible at all. As Ben himself says:

After all the work of WASP and others to promote clean markup, valid pages and graceful degradation via CSS – it sucks that we’re going back to tag soup days by throwing Javascript tags into our HTML.

So he wrote an excellent piece of Javascript which he called Behaviour. Using it we can get from the above piece of code to this:

Dredge

Which is much much better and a lot more readable.

The Solution

The answer is Ben’s Behaviour. It basically allows you to use CSS selectors to specify elements to add Javascript events to. For example:

So here we use an event thats specifically set to be triggered when the ‘andy’ class of an ‘a’ element is used. How easy is that? And it makes our markup so much cleaner and more accessible.

However…

There’s always a ‘but’ or a ‘however’ right? Well, yeah there is here too. There’s no easy way to have multiple dynamic sources so what you need to do is set each new object manually in your Javascript like so:

Which is triggered by your links like so:

Now thats a bit of a ball-ache but the accessibility and semantic advantages are massive. Besides it is possible to seriously redefine the Javascript used – maybe place all feed URL’s in an array and call array elements into the object dynamically – you could even get your server side code to add to the array dynamically i.e. get PHP (or perl/Python/ASP/whatever) to open up the .js file and write to the array – it all depends on how much automation you want. For me, the prime concern was cleaning up the markup to make it more accessible – going the long way round on the behaviour side is a small price to pay. So far.

Here’s the revamped page.

Ammended!

OK, as per comment no.1 this is now form-less. The code adjustments are as follows – first we adjust our javascript Behaviour object to:

Next we alter our core AJAX script like so:

Lastly, you can remove the now obselete element from the markup – job done.

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.

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?