Autistic Pride Day: Camille Clark

13 Jun

In the days leading up to Autistic Pride Day, its important to hear from autistics about what it means to them directly. Its all well and good listening to me say what I think but to really appreciate the importance of a day like this, its imperative to hear things as they are from someone who knows first hand what it means. To that end, I’ve asked a number of adult and child autistics to contribute a piece detailing what Autistic Pride Day measn to them.

Today, I’d like to introduce you to Camille Clark whos fascinating website has opened my eyes to a wide range of possibilities for my daughter.

Autistic Pride Day. Why June 18th, you may ask? It commemorates the day that Temple Grandin graduated from 3rd grade. It was the day that Stephen Shore first learned to make a noise while flapping his hands at the wrist. It was on that date that Gerry Newport’s autistic adult support group first met in Los Angeles, California. On this very day, the parents of Alex and Ben Bain met. It was on this sunny date in history that Michelle Dawson decided that she didn’t hate being
autistic after all. It was the first day of filming of “Rain Man”. It was the day I received my diagnosis of Asperger’s syndrome at 43years old.

Well, actually, no.

As far as I know, none of the above occured on June 18th and I don’t know why June 18th was chosen as Autistic Pride Day.

Nevertheless, you may be asking yourself, “What is Camille doing to mark Autistic Pride Day?”

It’s not likely that you are asking yourself that, I know, but anyway, here’s the answer:

Like every other day, I will think about the efforts of autistic people to live a satisfying life. I will do what I can to encourage us to keep up the good work, and try to help us deal with discouragement.

OK, maybe it’s unforgivably corny and trite, but I think every day is Autistic Pride day. All those on the autism spectrum, as a group, face an uphill battle every day and deserve so much credit for it.
When I look at the bunch on the Autistic Adults Picture Project, I’m proud of them. The same goes for the other autistics that I hear
about and those that I meet and know in real life. I’m proud of the other autism spectrum adult in my household. My own offspring, a wonderful person and a credit to humanity. Makes me proud, even if I can’t take credit for that beautiful personality.

What has happened in the last year’s time for us all to be proud of? Well, a little more than a year ago the Auton case was heard in Canada’s Supreme Court. The decision which was handed down in Novevember of last year, on whether or not behavioral therapy was “medically necessary” for autistic children, included mention of an adult autistic, Michelle Dawson. By so doing the court recognized that the voices of autistcs should be heard in issues that affect them. This was no small feat, as Michelle faced opposition from both sides, the government and the “parents”. They did not want to hear what an adult autistic thought about the case.

In the last year, 17 years old autistic, Alex Bain, also of Canada, distinguished himself as a runner and won several significant awards for his running on Prince Edward Island. Kathleen Seidel, mother of
an autism spectrum daughter, and webmistress of neurodiversity.com, wrote not only, “The Autistic Distinction” , but she also took on Lenny Schafer, which effort documented under the title; “Lenny Schafer’s Inquisition“, and recently challenged David Kirby and his backers with “Evidence of Venom” , to name a few of her major undertakings. Gayle Fitzpatrick and Charles Rankowski, parents of
Jan, went to bat for his right to play on a school playground while autistic. On December 20, 2004, autistic advocacy made it to the front page of the New York Times, again, this time with the article titled, “How About Not ‘Curing’ Us, Some Autistics Are Pleading“, the article included a photo of Jane Meyerding and quoted her, as well. That New York Times reporter actually went to Autreat. In March of this year, Autism Diva put on her tiara and started to set some facts straight.

And in this last year, several thousand autistic children, worldwide, graduated 3rd grade, many of them with memories of bullying and ostracism. Maybe, next by year “autistic pride” will become a more widely known concept and the autisic third graders will have fewer bad memories and experience more joy and pride in who they are.

Data Unification

13 Jun

As part of my continuing quest to find ways of redeeming Flash in unobtrusive yet useful ways, it occurred to me that you could use Flash as a data unification tool. What I mean by that is that you could use Flash to process disparate coding environments – particularly client side and server side code.

How This Came About

The idea first occurred to me when I was just starting the redesign of my work site. Basically, my boss wanted to ditch support for 800px width users and I thought that would be commercial suicide and said so. I quoted him the figures and he asked me to confirm that level from our own users.

So I had a nice problem to solve. For one week I had to collect data about our users screen resolution. My first idea was our web logs but our current package didn’t support the ability to detect screen resolution so I decided to use Javascript and record the data somehow. I realised immediately I had two problems.

Firstly, I had to find a way to get my Javascript data into SQLServer. Not being a hardcore SQLServer guy I didn’t know a way to get Javascript variable data in easily.

Secondly, I had to discount the possibility of multiple hits from the same user on different pages. So my solution would need to detect the screen res and IP Address of each user, once.

I knew I could detect screen width with Javascript but I also knew that Javascript couldn’t pick up IP Addresses so I was in a bit of a quandary until it occurred to me – I needed a central processing area that could handle both: Flash.

The Solution

The actual Flash part of the solution is negligible. Its simply a 1px by 1px SWF that collects variables and then passes them on to a server side script to insert them into SQLServer. For the purposes of this post I’m going to assume you know how to do this already. I’ll just concentrate on getting client side and server side data into Flash together.

It should also be remembered that this is a fairly basic application I’m building here. I see no reason why this couldn’t be extended to work in a variety of ways. I should also mention that at the time of writing it has one large drawback – the page it sits in won’t validate as XHTML 1.0 Strict. I’m positive its due to my rusty javascript skills rather than an actual inability so feel free to pick it apart and tell me where I screwed up.

Before we delve into the code though, go see it working. This illustration has a display obviously so that you can see it but in a production environment it could sit invisibly on the page. In my example, the top number is your IP address thats passed in from PHP and the second number is your screen width thats passed in from Javascript.

OK, onwards. First we start with a simple PHP one-liner – pick up the visitors IP Address.

Simple. Next up is the core of the technique. It involves creating a Javascript function that creates the Flash movie and appends all your desired data to the querystring of the movie reference declaration:

So firstly, I assigned the value of the screen width to a variable I called ‘w’ (Imaginative eh?). After that comes the all-important line to pass the URL-encoded values in:

data="http://www.kevinleitch.co.uk/testarea/catchswf.swf?r=' + w + '"

As this line is written by a Javascript document.write, appending the value of ‘w’ to it is straightforward. Its also very straightforward to append a PHP name/value pair by getting the Javascript to actually write out the code required. This is the line that could be extended to pass in as many variables as you need from any source. As the code is being generated by Javascript you aren’t limited to just PHP, you could easily use ASP – or even a combo of PHP and ASP if you so desired (and your server was capable).

For me this solved my main problem of bringing together into one potential recordset data from both client and server side technologies. All I had to do now was pass both these values to a PHP script that in turn checked the users IP, queried SQLServer and discarded the recordset if there was a recordset with that existing IP and submitted the recordset into SQLServer if there was no IP match. Job done. And because it all happened in Flash it all happened ‘behind the scenes’ without my user ever being troubled by it. Nice, quiet, unobtrusive. Here’s the code in full:

What Next?

This is very dirty code. It needs tidying up and made to validate. It also needs extending into an easy-to-use methodology so that its obvious how to extend the functionality into multiple name/value pairs and/or arrays etc. I may be the one to do that or I may not. If you fancy having a go then go right ahead.

Getting A Move On

10 Jun

I’m now writing the final draft of the final article of the final part of Project: New Part I. I’ve had to do this one quicker than I usually do as Naomi (my wife) is now down to T-minus 14 days and counting until B-Day (thats Birth Day) but she’s been having contractions for the last two or three days – not of the Braxton Hicks variety (sounds like a team of celebrity web designers!) – but the real thing so we don’t think its going to be too long now.

I’m going to try and get this issue done and out the door (so to speak) as soon as possible and then it won’t be preying on my mind. I _hate_ unfinished things hanging around!

I thought I’d write down a few things about how I found the process of writing it all down and what I got out of it – it wasn’t an entirely selfless act of generosity I can tell you.

I have to tell you the truth and say that writing it was an act of will unlike anything else I’ve ever done and you’re talking to a man who gave up smoking five years ago! What I mean by that is that it took an act of will to commit to writing it and to keep writing it. As must be obvious by my recent spate of redesigns I get bored pretty easily and I was worried that I’d do the first couple and then it’d just tail off into a dusty half-finished site.

But that didn’t happen. As I said it was an act of will but it also became fun committing ideas and concepts that I’d learnt sometimes years before to ‘paper’. Somebody wiser than me once said that the concept of thought is only complete with an act of actualisation and doing this certainly taught me the truth of that statement. We, as designers, get so used to doing things on instinct as thats a large part of what we do – making instinct about an idea/concept/service/product respond in a positive way – that actually stopping and thinking about why we do these things doesn’t always come easy. In some instances I’ve said things that I’ve never thought of in such literal ways before and in some instances I’ve had the help of a great bunch of people to say things better than I ever could.

So this has been a positive learning experience for me too. I feel much more ‘plugged in’ to my profession that I have for a few years. Deciding to concentrate on Flash so heavily 4 or 5 years ago was a big mistake in lots of ways. In terms of my thoughts of processes and adaptability that decision cost me heavily. In terms of my ability to build websites that clients and users like rather than other designers like it also cost me heavily and I feel that I’m still not in a position to really say I’ve caught up in that respect even now. But I do feel that writing Project: New has brought me to a position where I can participate on a level that will enable me to start pushing myself to catch up.

After my baby’s born, obviously ;o)

Safe Redirects for SEO

9 Jun

We all know that Search Engines hate change. Whenever we decide to do a total restructural change of any site we run the risk of pissing off search engines. And when we piss off search engines, we start to drop down the rankings.

Why? Because when we change the structure of a site (i.e. add or remove pages from the existing structure) Google doesn’t know where to find the new pages until we tell them. Now we could just use a meta refresh but search engines have to come to view these as spamming tactics and you run the risk of being penalised. So instead you need to permanently redirect your bots (and human visitors!) to the new page, straight from the old page and create a safe association in the consciousness of Google between those two pages.

You can set up server side methods to allow for 301 redirects on both Apache and IIS but sometimes you’re on a shared hosting account that doesn’t allow access to these methods. So what do you do? You script the changes manually. You can use PHP, or ASP or .NET to script a 301 page very easily.

PHP

ASP

VB.NET

So you simply paste this code into your old pages, remove the content that used to be in there and adjust the target URI to point to the new page – job done. Google now associates the new page with the old and you should keep your hard-fought for PR and rankings.

What about when you have a *lot* of pages that are being redirected? For example, an old version of the Group site I work on changed from trad ASP to .NET and hence all our pages needed rebuilding and the site structure changed a lot. The old version of the site ran off the index.asp page with pages being called in depending on the values in the query string e.g. …/index.asp called in the home page obviously but …index.asp?TYPE=02 called in the Mortgage pages and …index.asp?TYPE=02&aid=5 called in the first time mortgages page in the mortgage section. So I had to allow for all these pages which were indexed in search engines and working nicely. I did this like so:

I saved that page as index.asp (which didn’t conflict with my new index.aspx page) and then every time a search engine sent a visitor to an old page the case statements sorted out where to send the visitor in the new structure. Job done!

Autism/MMR Connection Dead

9 Jun

A report on AWARES.org highlights a BBC documentary that finally lays the MMR/Autism connection to rest.

Andrew Wakefield was one of 13 authors of a paper published in The Lancet all edging a connection between MMR and autism. In fact, there were only 12 people studied, 9 of whom were autistic – it seemed Wakefield made the schoolboy error of deciding on his conclusions and working backwards to find his ‘culprit’.

On the question of these 12 subjects, it later transpired that some of the 12 were not randomly selected but supplied to Dr Wakefield by a firm of lawyers acting for the parents who believed their kids were ‘made’ autistic by the vaccine. Accoring to ratbgs (see below) Wakefield was paid about £50,000 for his work and was lined up for lots more as a paid expert witness when legal action against the Pharma’s swung into action. As Ratbags say:

Put bluntly, Wakefield was paid to find a certain result (which matched his beliefs anyway) and was going to get a lot more money if he found it.

Shortly afterwards 10 of the 13 authors of the original report authors issued a statement saying that the paper was not evidence of a connection between MMR vaccine and autism and The Lancet now say they would never have published the paper at all if they’d known about Wakefields payments.

In the last few years study after study has repeated the fact that MMR does not cause autism but anti-vax campaigners said that because all these studies were epidemiological (in other words they only looked the stats) they were useless and what was needed was someone to look at the bowels of autsitic kids.

And thats exactly what the BBC documentary shows – a team of renowned scientists looking at the bowels of autistics.

Now, such research has been carried out. Scientists at Guy’s Hospital, in London, have been studying a large group of 100 autistic children. They examined their blood samples, looking for traces of the measles virus in their blood and in that of another group of non-autistic children. The samples were analysed in some of Britain’s leading laboratories, using the most sensitive methods available. The scientists found that 99 per cent of the samples did not contain any trace of the measles virus. Crucially, there was no difference between the autistic and non-autistic children.

And thats pretty much that. I’ve no doubt at all that this will do nothing to silence the most vocal and shrill of the anti-vax brigade – they’ll accuse the scientists who conducted the study of being in the pocket of the big pharma companys no doubt – but hopefully it will reassure the vast majority of parents that MMR is safe in this respect.

Accessibility: Who’s Responsible?

8 Jun

I was chatting with Ryan Carson today via email (Moi? A name-dropper?) about a letter I’d written to .net ranting about calmly debating accessibility and how to test it. The letter and its contents are unimportant in this context but the email conversation with Ryan sparked of a train of thought about legal responsibility for accessibility. Its something that I’ve never thought to question until now and a quick peruse of accessify.com revealed no answers.

So who’s legally responsible for accessibility? In this country we have the DDA (Disability Discrimination Act) which is supposed to be the act that governs web accessibility. In that I can only find one fairly woolly statement:

…service providers have had to consider making reasonable adjustments to the way they deliver their services so that disabled people can use them.

DDA.

So lets say Client X employs Designer Y to build him a website. Lets further say that Client X doesn’t explicitly request an _accessible_ website – why would he? He probably has no idea that a law such as this is in effect or covers websites. So Designer Y builds the site, Client X loves it and 2 months down the line User Z can’t place an order because the shopping cart isn’t accessible. User Z is pretty pissed off about this and feels (with some legitimacy) that hes been denied a provision of goods that a non-disabled user can access. He decides to sue.

Who does he sue? Is it Client X’s responsibility as he’s the person who should’ve a) checked the law before commissioning the project and b) provided an accessible website to User Z? Or should User Z sue Designer Y as he’s the guy who actually built the site and really should’ve been professional enough to ensure it was accessible? Maybe User Z will sue Client X who will then turn round and sue Designer Y. But, if Client X signed off the project, isn’t that his problem and not Designer Y’s?

Questions, questions, questions…whats your thoughts international design community?

Bit Of A Blow

7 Jun

You may remember I posted awhile ago that one of Megan’s two LSA (Learning Support Assistants) had to hand in her notice as her husband was being posted to Cyprus. A shame we thought and it will disrupt Megan but we’ll get through it because she’ll still be with her other LSA.

Can you tell where I’m going with this yet? No? Well yesterday, Megan’s second LSA handed in her notice. Its not her fault anymore than it is the other LSA’s but it is a bit of a blow. Suddenly, from having a difficult yet ultimately successful school year with Megan we now face a July with neither of her two familiar LSA’s who she adores and formed close ties with. In fact, the school don’t even know if they can get anyone in place at all for July so we may have to keep her at home which is far from ideal. This whole year has been about getting her familiar with her environment and the people in it and it worked well. So well in fact that she is now taking an active role in class and _wanting_ to join in with the other kids. This *will* set her back.

We also have the prospect of Megan starting in a new year in September with not only a new class and new teacher to contend with but also two brand new LSA’s to build a relationship with. These are not inconsequential things for Megan to get past. She has plenty of self confidence but takes awhile to adjust to new people and routines. We”ll essentially be starting again from scratch.

All this couldn’t have come at a worse time of course. Naomi (my wife) is due to give birth imminently which is another big change Megan will have to try and adjust to. It also has an impact on her communication programme. Her two current LSA’s are a vital cog in the machinery of her Speech Therapy and PECS (Picture Exchange Communication System) programme and so that will suffer too. Naomi nd I of course will have to pick up the slack in this respect. We’ve been holding back a little up till now as we didn’t want to ‘get ahead’ of the school but with this news we can’t really afford to not step up our involvement.

This whole situation is nobody’s fault and we totally understand the reasons both Megan’s LSA’s are moving on – one’s own family has to come first – but we can’t help feeling very frustrated and anxious about the impact this will have on Megan’s schooling.

Autistic Pride Day: A Desirable World

6 Jun

One of the saddest, most chilling aspects of reading the words of those who claim autism is solely mercury poisoning is the cheapening of the word ‘autistic’ to reflect illness, negativity, inhuman, uncaring, amorality. To those who would rob my daughter of the identity she has I would like to ask: why? So your children may be ill. Your children may have been misdiagnosed as autistic and your children may be in pain.

None of that gives you the right to denigrate the person that my daughter and thousands of other autistics is/are. Imagine the public outcry if we suddenly decided that a dark skin was a ‘treatable illness’ and that we could ‘reclaim our dark-skinned children’. If your children had dark skin as, for example, a result of being burnt in a fire, then no-one would deny them medical treatment. But would it be right to categorise _all_ dark skinned children in this way? Of course not.

In the article I want to recommend people read, Amanda Baggs details the sort of world she wished she lived in. It sounds like a great place to me. However,

Currently, I can find exactly one printed book which tells me what I know to be true — it is okay, even beautiful, to be autistic. The book is Through the Eyes of Aliens, by Jasmine Lee O’Neill. I carry a copy of this book everywhere, and even sleep with a copy of it. It is the only concrete and lasting object I own that tells me, directly, “It is okay to be you.” Someday, I hope there will be more.

Amanda writes eloquently about dignity and respect. Dignity for the autistic to be autistic without the impediment of a society trying to ‘cure’ him or her and respect for the genuine nature of autism – not as the side effect of a toxic metal overdose but as the unique difference that it represents. Please read Amanda’s piece and remember that it is written by a woman once regarded as ‘low functioning’. If Amanda is low functioning then I can only hope that my daughter stays low functioning for the rest of her life.

Google Site Maps Submission

6 Jun

Its long been established in SEO (Search Engine Optimisation) circles that having a decent site map can definitely help search engines spiders and bots to more accurately index your site. Now Google has taken this one step further and introduced the Beta of its Sitemaps feature.

Google say this new feature is to speed up the indexing time between site submissions and site crawling – as you may know, sites don’t get crawled straight away after being submitted to Google – and by introducing this feature, Google claim that they can speed up the process of crawling as you effectively present _all_ your links to Google in one go, rather than simply submitting one single URI (Uniform Resource Indicator). Makes sense to me.

Google have given their biggest indicator yet that they intend to make semantics play a big role in the search engine of the future by insisting that site maps submitted to them follow a rigid XML schema. This is good news for both them and us. Them as it gives them a single format to play with, us as besides also giving _us_ a single format to play with, it encourages us to think about semantic flow.

Below is an example of the XML file using the Sitemap format (0.84 at the time of writing):

As you can see, its fairly self-explanatory. Within each url element there are a number of child elements you could declare including the location (loc), the last modification date of this page (lastmod), how often the page is likely to change (changefreq) and how important this page is relative to the other pages on the site(priority). Google provide a full listing on their Help page.

If you have a small site that changes infrequently, you may wish to create your sitemap by hand but if you have a large site you should find a way to let your site auto create your Sitemap – your sitemap file acts like a robots.txt file in that it is always monitored by Google so finding an automatic way to update it as your sites pages update is a must. Google have tried to help in that respect and have produced a Sitemap generator written in Python. Or, for those of us who use WordPress, there is a dedicated plugin written by Arne Brachhold that does all the work for you. I’m also in the process of writing a fairly generic script to do this in PHP. Maybe you know of a script that does this already.

Open Letter to Evidence Of Harm List Members

5 Jun

Let’s start off with a basic assumption.

You love your kids. I love mine.

A lot of you don’t understand where Kathleen Seidel is coming from, whereas I sometimes can’t understand where you’re coming from. I read posts on the EoH list that say you want to test Kathleen’s kids and I wonder at how you could possibly be so insensitive. I’m sure you often wonder how I, or Kathleen or anyone else on our side of the debate can be so insensitive. I visit other websites where you have all descended en masse and wonder at your behaviour – anyone who disagrees with you is attacked in highly personal ways. And to what end? How does that advance your position?

I’ve received hate mail from some of you which is both highly personal and highly inaccurate. Some of you have stooped so low as to personally attack my daughter, a five year old autistic girl, in words so personal I can’t bear to repeat them. According to some of you, I flit around various websites under a variety of assumed names for reasons that are left unexplained and on evidence that to anyone who makes their living on the web, is naive and technically incompetent. I have also heard descriptions of some of the people I think of as cohorts that verge on the libelous. I really, truly wonder what exactly you get out of this behaviour?

Now, I can’t speak for Kathleen or anyone else but for myself I think you really need to take a long hard look at your behaviour as a group. As individuals I’m sure most of you are decent people – indeed, I have received approaching 20 emails from various members of the EoH lists that apologise for the way I, or Kathleen, or Camille, or anyone else has been portrayed. Some of these people say they can see my/our position and respect me/us for it. However, it seems that the mob still holds sway on EoH itself.

I don’t believe that autism is mercury poisoning. Generation Rescue and the few people who stick to that error both in the book and on the EoH list are simply wrong. This is my main gripe with the book and with a lot of you.

I believe that some of your kids have been mercury poisoned – you say you have tests that prove it and I have no particular reason to disbelieve what you say – and that is a bad thing. I also think that the CDC in your country should release their data. Further I think there needs to be an internationally funded, independent body set up to look at rates of prevalence across the entire world. It would take time but it is badly needed in my opinion. I don’t agree with the opinion that autism is an epidemic and I object strenuously to my daughter and people like her, who have definitely not been metal poisoned being characterised in this way.

I think (sadly) that the majority of your kids who are metal poisoned have been misdiagnosed as autistic. I think that if there is an increase in prevalence then this will be one of the reasons. I also think that there will come a time when you, as a group, will have to face the fact that your kids are either not autistic and are metal poisoned, or autistic and therefore almost certainly won’t react well to treatments such as Chelation. I don’t know any of you and you don’t know me but what I do know is that autistic kids need early intervention and that the best type of intervention you can give them is love, acceptance and encouragement. Your autistic kids won’t always be kids. They will grow into teenagers and then adults. And they will still be autistic. Do you really want them to grow up feeling guilty and ashamed of who they are? Look at the examples of Temple Grandin and Donna Williams who were both diagnosed as low functioning autistics. See what they are now. Strong, independent, forthright people. Read some of the library articles at autistics.org. A lot of the contributors there were also diagnosed as low functioning as kids. But kids grow up and develop. Can you say you were intellectually at your best as a 3 year old? Did you communicate as well as a 20 year old?

I don’t want to go on being angry with a group of people I don’t really know but neither do I want my daughter to grow up characterised only by negative assumptions about who she is and how she got that way. Please, buy as many copies of Evidence of Harm as you like, but don’t let one book that only tells one side of the story distract you from the truth that autism is not solely mercury poisoning. Don’t let your zeal to find personal answers obstruct autistics who were never metal poisoned from the legitimacy of their condition, or their well meaning parents efforts to support their needs as they see them.

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