BigBlog

There are two things that I'm not a fan of. Political correctness - and the "R" word.

The movie Tropic Thunder has provided a very big grey area for me as it touches on both issues, and in a big way. It is for this reason that I am forced to do something I rarely do - sit on the fence on this issue.

I'm all for the protests against the use of the "R" word. It's wrong, and just as bad as the words that are used for skin colour, culture and religion in derogatory terms. I think we know the words I'm talking about.

On the other hand, there is such a thing as "poetic license". And in the movie there is also a case for parody and satire - as Ben Stiller pointed out. In other words, he's saying that the issue is being taken out of context because the movie is a fantasy and a comedy lampooning Hollywood. This is where the vexed issue of political correctness comes in.

I'm not about to defend the general idea of parody and satire because I'd be defending the likes of Encyclopedia Dramatica and Uncyclopedia - which I won't do. But there is a difference between doing it right and doing it wrong. I'm all for lampooning Hollywood. It is loaded with hypocrites and fakes, and the best satire comes from within.

The one part I do have a problem with is the generic "Rain Man" comment. This is the line that is attracting the most angst, and here I do agree. Because it paints everyone on the Spectrum as a Rain Man type. But it only demonstrates how far we have to go to educate. It's more a symptom of the problem rather than a problem in itself per se. In a way, the comment shows agreement with the media's general portrayl of the Spectrum - a portrayl that has been going on for years and is hardly new.

This is pretty much all I'm going to say on the subject. If one wants to protest, no matter which side you're on - go right ahead. Both sides have a legit case. And I'm staying out of this one.

I just got a message from the Quackbusters mailing list, informing list members that Clifford Shoemaker has been slapped by the court for his pathetic supoena against Kathleen Seidel as I previously noted on this blog.

Basically what has happened is that the court quashed the supoena, and demanded that Shoemaker show why he shouldn't be penalised under a rule of the system regarding lawyer ethics.

Shoemaker tried to claim that Kathy wasn't "just a mother of an autistic child and a housewife" but a "co-conspirator". But he failed to provide any evidence to prove this, and the judge rightly noted Kathy's library experience plus her right to freedom of speech as the reason for her knowledge. She was simply a good researcher (like most librarians are). I think the judge knew that Shoemaker was simply peeved at the detail Kathy had gone into exposing Shoemaker's history and went completely overboard over something that was on the public record and he couldn't do a thing about it!

To cut a long story short - Shoemaker has been ordered within three months to participate in a legal education program on ethics and on discovery rules, and show a certificate of completion of the program. Not only that, the court has also referred the conduct to his own Bar in Virginia (the court that handled this was in New Hampshire I think) for action.

It's probably wishful thinking, but maybe the Bar will kick him out and he can't practice any more - at least in Virginia!

On top of the withdrawal of the original case (Sykes v Bayer) this is another victory for the Autistic Rights Movement!

When I wrote to Time Magazine to protest about their inclusion of Bob and Suzanne Wright as "heroes and pioneers" not that long ago, I completely forgot about the controversy over the parody site "NT Speaks". I was reminded of it seeing that Amanda Baggs had noted yet another controversy - and this one is just as stupid.

Another ASD person by the name of Zach created a line of T-Shirts that read "‘Autism Speaks’ can go away. I have autism. I can speak for myself". It was hosted by a website called Zazzle, who suddenly took the line down without explanation. When Zach enquired, Zazzle told him that Autism Speaks told them to take it down - apparently threatening legal action.

For what?

I don't mind legal action for a purpose, but the purpose here was clearly to shut up anyone who even remotely claims that we can speak for ourselves. The key to Autism Speaks and their promotion of Autism is that we can't communicate in any way! They are keen to keep things negative so they can proceed with their eugenic research. That can not be permitted to continue.

Larry Arnold has already grabbed the domain for 'autismspeaks.eu', but he uses it for advocacy instead of to bag Autism Speaks. I'd grab 'autismspeaks.com.au' but that's not cheap and I don't have the spare time to take anything else on at present anyway what with the massive upgrade to my current website coming. I am also tempted to start a line of T-Shirts or something similar, but that presents the same problem - along with the fact that making money out of such a thing is something I have serious moral issues with. Such money should be donated, and there isn't any Autistic specific charity in Australia (which should change IMO).

But someone has to do something. If I could get something going, and if I got a message from Autism Speaks threatening legal action - I would tell them to bring it on. And I would prove to the court and to them that they are barking up the wrong tree on ASD's and they are harming kids on the Spectrum with their tactics and not helping them. In fact I would counter sue them for defamation of character and vilification on the basis of a "disability" (legal interpretation).

I wish I had the time to do so. I've been going very well lately with legal activity in other areas of my life, and this could have been another notch in my belt.

UPDATE: It would seem that there has been a misunderstanding. Autism Speaks never contacted Zazzle and apparently Zazzle was acting in part from previous issues seperate to the organisation. The reaction by Zach was understandable, but this was nevertheless incorrect.

I was looking on the Autism Hub and came across this campaign, and Alex Plank over at Wrong Planet giving it a bake for depicting Autism badly.

Whilst I respect Alex's translation, this is one of those 50/50 things. And here's why.

Alex has translated this as an attack on Autism similar to the Random Notes thing a little while ago. In that the idea of a person in a jail cell insinuates that all Auties are in a jail cell and the only way to get them out is to cure them. And also depict Autism as a bad thing.

Now here's the other translation - and this is a better one and I would have thought this is what the people running the campaign would have told Alex. We aren't in the jail cell simply because we are on the Spectrum. The jail cell actually doesn't represent Autism. It represents the intolerance of the Spectrum. In other words - we have been thrown in there by NTE's (Neuro Typical Enemies) who are trying to penalise us for being who we are. The money being sought is for support groups to break that attitude and help Auties cope better, and also to educate those who are committing this heinous act.

Unlike Ranson Notes, this campaign is better aimed. Whilst the translation issue (that Alex has unwittingly identified) may present a problem, this is a grey area - whereas Ransom Notes was blatant in it's depiction of Autism as being the metaphorical jailer. The aim here is far more ambiguous - and the fact that the second translation (mine) exists, means that the campaign should be given at least just a little bit of respect.

Let's see where the money goes.

I've been thinking about the mercury militia's poster girl, Jenny McCarthy and her crusade against the vaccine schedule. Now I'll be honest - there is a problem. However having said that the problem is not the schedule as such. The problem is the way it is being translated. It is based on the assumption that a child will not get sick, or if they do they won't be sick for very long. Some doctors - in their determination to keep to the schedule - ignore common sense and insist on vaccinating anyway when the immune system is at it's most vulnerable. Catch ups can also be fraught with risk, depending on the vaccines and how many.

I've always said that vaccines are not the problem. Like all tools, it depends on how they are used. And like all tools that are misused, accidents happen. That's partly why the US has a Vaccine Court, although I would prefer people target the doctors rather than the vaccines.

This is the problem with Jenny McCarthy. She's trying to blame the vaccines and she is demanding that the schedule be slowed down. I don't know what she is aiming at, but if she is saying that 30 in two years is too fast - she's wrong. Unless of course the child gets ill too often, but that's something that no one (not even the CDC) can predict. To expect anyone to predict such a thing is to expect a crystal ball to work!

But one remark that Jim Carrey made during the protest really demonstrated the desperation of these protestors. He spoke of fire engines attending a fire - and people getting knocked down by the engine on the way to the fire. His solution? Slow the fire engine down!

ARE YOU KIDDING ME, CARREY????

The solution to that is NOT to slow the engine down. The solution is to get the people out of the bloody way!! That reminds me a lot of the problems we have in Australia at the moment with people playing chicken with trains at level crossings - and complaining when they get hit (if they survive that is). People haven't said slow the train down though, because the train (just like the fire engine) always has the right of way.

Vaccines equally have the right of way. But like fire engines and trains there is still a speed limit. It is just a lot faster than these fools want it to be. Just like getting to a fire later, lives will be lost. And no matter what anyone says - that is a price not worth paying. McCarthy is a believer in Autism being worse than some killer childhood diseases. That is just as unrealistic - because with Autism a child lives on. Real diseases that vaccines prevent kill children outright. Autism has never ever killed one child - and the sooner McCarthy and her allies realise this the better.

I've been thinking about this for some time. The constant stream of abuse I get whenever the dreaded "employment" subject comes up.

Those who know me well enough know what I have been through. I won't elaborate on that here because that isn't what this entry is all about. I have my own personal reasons for not working and aside from the issues that affect me directly, there is another one that affects everyone on the Spectrum who have fallen through the cracks in the system.

Exploitation.

It has been suggested to me that I go and get a simple job like as a cleaner for example. Simple work, easy to do and so on. I have two issues with that suggestion (notwithstanding the other reasons I spoke of which clinch it anyway). Cleaning is an insult for someone who has skills that should be used instead of ignored. Leave that sort of job who genuinely is not capable of learning the skills needed - and I don't mean that in a nasty way. There are people who genuinely have problems learning - and that includes outside the Autistic Spectrum.

The second issue is that as a rule, being a cleaner is seen by society at large as a job for dumb people. The same is true of employers - and this automatically leads to exploitation. Extra hours work for minimal pay - appalling work conditions etc etc. This is the sort of work that the former Howard government's industrual relations legislation (the pathetic Work Choices) allowed the maximum exploitation for. AWA's for cleaners would have included extended hours, and the sort of people it employed were generally contractors or individuals who were either unable to work anywhere else and as a result were prepared to do anything to work - the perfect combination for exploitation - or just basically weren't prepared to fight for a better deal in employment in general when it came to their skills, and allowed themselves to be dictated to by society. This is another version of a perfect combination for exploitation.

Cleaning jobs are for temps who do it part time or casually to either help with studies. They are the only ones who would actually get something out of jobs like this. It's the western world's version of slavery. Not as bad as genuine slavery of course, but the conditions are such that health problems for those who sub consciously know they are better than this but don't have the backbone to pursue the better employment are rife. The sub concious distress can lead to things like heart attacks. It's not right, and it's a human rights abuse. The worst part about it is those on the Spectrum who end up actually choosing this line of work don't even realise it. Or worse, they ignore the alarm bells - putting their hip pocket ahead of their mental health. I'll never respect that attitude.

99 times out of 100, cleaners are people who have been exploited. It's not a full time job and it should never be. It's also not a long term job. Anyone who takes up such a job full time long term is being exploited, especially if the exploitation is happening at the expense of a person on the Autistic Spectrum.

It's about time it stopped. Those certainly on the higher end of the Spectrum are better than that, and deserve better. We have a skills shortage in Australia. Let's concentrate on the skills us Aspies in particular do have, instead of defaulting to the old "if he's not 'normal' he's dumb" attitude. That's exploitation just waiting to happen. And those on the Spectrum are the most vulnerable victims.

I read with alarm and disgust that well known mercury militia member Lisa Sykes has decided to get her lawyer, Clifford Shoemaker, to supoena Kathy Seidel for a deposition. This appears to be over Kathy's commentary on the issues of Autism, and likely her comments that may or may not have been made against Sykes.

Kathy is fighting it, and I say good for her. This supoena is definitely harrassment and an attempt to shut Kathy up, and her response to the court order (to apply via court motion to quash it) is magnificent to say the least.

I mean heck, in the supoena the contact details of EVERYONE who has commented on the matter on her blog is demanded. I'm not mentioned, but a lot of people I am aware of are. Believe me, if I had been mentioned I would have been very quick to make my own application and probably file a suit for harrassment on the grounds of the frivilous content.

I have enough experience in the legal system to know that Kathy's response should be successful, On this blog I formally condemn the actions of Clifford Shoemaker and Lisa Sykes and request that they concentrate on their own case against the Bayer Corporation (presumably Sykes is acting directly instead of through the Vaccine Courts on behalf of her Autistic child) and leave people like Kathy and co alone. If she wants to go down that path she'll have a mighty war on her hands with everyone on the supoena likely (I hope) to get involved in a class action against this foolish woman and her stupid lawyer!

In fact - I would call the content of this supoena tantamount to defamation because it insinuates that Kathy is making a profit out of her website, neurodiversity.com. She addresses that in her quash motion. I know the feeling of being accused of that, thanks to some twit who reported my website to Centrelink. I easily countered the complaint with no fuss.

Sykes, you are an idiot! Shoemaker, you should have your right to practice law revoked!

I encourage Kathy to claim costs and restitution when this supoena is quashed as it should be.

http://neurodiversity.com/weblog/article/150/

This is a reprint of a comment I placed onto a poorly informed article by Cornelia Read;

Just in case it hasn't been said already - Cornelia, you said "Don't believe anything you read". And yet here you are - BELIEVING IT!!

Hannah Poling is NOT Autistic. She has traits, yes, but not enough for a diagnosis. Oh you didn't know that? You didn't know that you can only be on the Spectrum if you have a certain number of traits?

You - like the mercury militia - are over simplifying the Autistic Spectrum, especially when you bring smoking (which IS simple) into the equation as a straw man argument. The Spectrum is much more complicated than that, and if you would look beyond your own child you'll realise the folly of the thrust of your article.

This sort of thinking is what delayed the initial writing on Autism - a side track. And the culprit was Eugene Bleuler and schizophrenia. Now we're at it again - and Kanner and Asperger will be wondering whether or not they wasted their time trying to correct the first side track. We made progress in 1994 when the two men's work was finally combined into one and seperated from Bleuler (the DSM-IV) leading to an increase in ASD diagnoses, and a decrease in wrong DX's. Now we're being sent up another medical cul-de-sac and we're nowhere nearer achieving what should be achieved - proper support and CORRECT treatment (if needed) for ASD's. As long as it's treated like a disease - the human race is doomed. Remember, if you want to talk about 1939, we were treating blacks like a disease as well. They've progressed further than we have, but it's the same story slowed down. Fear.

Fear of what? Fear of nothing. It's not a death sentence - unless you make it one by treating it like one. This is evolution, and the secret is tolerance.

This posting is laced with a complete lack of it, and for that you should be ashamed - especially as you are a mother of a person who is inherently part of that evolutionary process. Don't try and pull your child into your world. You have to enter theirs and adjust - like going into another country, another culture. Then you teach them about your culture. It's a long hard job, but if you go in there with an completely open mind you'll do it - and then the trick is to combine the two as best as possible. I've been working towards that as an Aspie (and proud of it) and the only setbacks I've had have been due to intolerance.

You should indeed learn from those who know, rather than from what is written. And the best source for you is your own child. Go into their world - and learn first hand. If you need help doing so, get it. And if it's not available in your area THEN you'll see why so many parents are panicking and falling for the very thing you said to avoid - believing what they read. LACK OF SUPPORT AND UNDERSTANDING.

Funny, you probably won't believe me for the same reason. The trouble is it's hard when I'm not exactly in a position to show you and words are the only way I can convey the message otherwise. "A paradox - a most ingenius paradox".

Today (April 2) is Autism Awareness Day, and Autism Spectrum Australia (Aspect) came down to Melbourne from it's home in Sydney to announce it's expansion into Victoria. I made the trip from Ballarat to see what they had to offer and to see if they could help me with my issues.

Judy Brewer (the wife of Tim Fischer) spoke - and mentioned that no two experiences of Autism in the family is the same. Every single experience is different. So no one can speak on the experience of Autism with any authority without seeing for themselves the experience of others. There is no maximum number for such experience, but there is a minimum - lots. She also mentioned the vast difference in services between Victoria and New South Wales (She has lived in both states), and specified Albury and Wodonga as a great example with people moving from one to the other to get access to the better services.

We heard about the basic mission of Aspect, which is admirable to say the least. About the only thing that was said that I didn't like was the mention of the part Autism Speaks played in arranging World Autism Day. A great demonstration of Autism Speaks and it's two faces.

Not surprisingly, there was a heavy emphasis on childhood support and early intervention. Understandable, and certainly something I'm all for. But they do have a person on board geared towards adult ASD needs. That shows the recognition needed for those who were diagnosed late as I was - or even too late in terms of being DXed in the pre teen years (which is also too late for intervention as such). The gentleman concerned did limit his spiel to young adults, so I took the opportunity from the floor to ask a question about those who were beyond employment and socialisation. I was generalising, but I was in effect talking about myself. He identified it as a big question, and admitted that there was a hole in the system that people were falling through - at which point I gave my usual stim of agreement (hand gestures like pointing at him and saying "Spot on", and leaning back in my chair nodding my head vigorously) and pointed out that I was one of those people.

Delightfully, when the presentation finished he sought me out straight away and we talked about my situation - and he agreed with everything I said about employment, particularly the closure issue with Australia Post and the Defence Department - and the CMO issue which played it's part. I also mentioned that because of this my life was now reliant on my special interests and I couldn't fit a job in without making massive changes to my routine - which could be done, but it would take a long long time. Of course as long as the CMO report was there it would be a wasted effort anyway.

He also mentioned some TAFE colleges trying to help those on the upper end of Spectrum to catch up with an education to get the qualifications to compete. I'd heard about that, but he admitted that it wasn't working for all of the participants - they were dropping off because of the atmosphere. The very concern I have with it - if the atmosphere isn't right, how the heck can you get the things you need to get done done? You can't - pure and simple.

I'll be emailing him when I get a chance to link him to my website and the Wiki. There is also a good chance that this gentleman could be a very big key in advocacy to getting the committe enquiry I've been chasing off the ground. That's the best part to come out of this - and it's the reason I went to this meeting in the first place. In the hope that I could get this sort of support.

It was worth the trip!

I caught the coverage of the press conference this morning on the Sky News showing of CBS News, and from what I could tell - the admission of vaccine damage to Hannah Poling has nothing to do with Autism. According to what I heard, the problem was a rare disorder that was unknown until this case was brought on.

Key words - rare disorder.

Now what has that got to do with Autism? Easy - nothing. I am in no doubt that once the genetic roots of ASD's are finally found that Hannah will lose her Autism DX.

I also noted on the CBS News that they spoke to their resident expert about giving five vaccines in rapid succession. That is risky to say the least - but is that the fault of the vaccines? Of course not! The fault lies in the application of the vaccines, and as the CBS expert stated "You should consult your doctor". Combine that with the fact that it is equally foolish to apply a vaccine to a sick child, and the vaccines themselves are much safer.

Katie Couric observed in a brief editorial comment before going onto the next story as to whether or not this decision was a precedent, or was it an exception?

Easy, Katie. It's an exception. The rare disorder is the key to that, and if this case was a part of the Omnibus (which I don't think it was because it wasn't mentioned when I last looked at the docket) I doubt that any of the just 5000 cases would be the same. Even 1 in 5000 would not be described as "rare".

After I typed this I watched the CNN video - and Hannah's mother gave a description PRE vaccination that gave all the indications that she already had Aspie traits. The intelligence level was exceptional and her logical knowledge seemed from the description to have been Aspie like. So if the vaccines had any effect - it changed the position on the Spectrum that she was already on. And judging by the video (they did show Hannah while her mother was speaking on CNN - CBS had a different video which confirmed my thoughts) she wasn't low functioning. Mind you, there was no guide either way as to whether or not speech was a problem.

I suspect that the government saw that the vaccines did something negative - hence their acceptance. But it wasn't causing Autism. It was a shift on the Spectrum.

I was just having a look at the Generation Rescue website to check on something, and I fell across Dan Olmsted's current contribution to the web - Age of Autism. And my attention was forcibly drawn to the posting "Why we'll win". I wasted no time posting a reply to this garbage, especially when I noticed that Theresa Cedillo had posted. It gave me a great opportunity to give her what for in relation to her neglect of her daughter Michelle (touched on earlier in this blog). I waited to see if it was let through before posting this message, given that I expected the comment to be modded out. And it was. So........

Nope - you'll all lose, because you're barking up the wrong tree. Autism is genetic and can not be cured. You're treating the symptoms and getting some limited improvement but that's all you'll get. The root condition is there for life.

Theresa, take responsibility for your actions. The fact that you failed to take your daughter straight to hospital when her tempreture hit 105 all those years ago is the reason your daughter is the way she is today. That is your fault - not the vaccine's. And that's why your case in the Vaccine Court will fail. As it should. As will all the others.

Autism is in the genes at it's root. It goes back to at least 1893 under the name of youth dementia - which has an anecdotal history dating back to ancient Greece. Thimerosal has NOTHING to do with Autism. Neither does the MMR jab. Established medical fact - and Andrew Wakefield will lose his license to practice medicine as a result of his actions.

If the author truly believes in freedom of speech, this comment will not be modded out.

I've picked up the news that the American Academy of Paediatrics are looking for people to help them. This has apparently scared the living daylights out of Generation Rescue who would be keen to nullify any positive coverage of ASD's and any attacks on their cult like belief. I call this a great move by the Academy and they have my full support on the effort.

The email I am reprinting below is for all parents who fit the bill requested. I for one would love to see this lead to something big to counter the coverage that Jenny McCarthy got, and to provide a focus to the objections to the "Eli Stone" episode. I don't allow comments here, but if you want to get involved, you can contact Susan Stevens Martin at the Academy at ssmartin@aap.org.

------------------------

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

1. Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child's vaccines and his or her autism.

2. Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP's goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Well, this is old news to me - but the infamous Dan Olmsted, the man with the "Amish don't have Autism" obsession, has finally been well and truly blown out of the water.

The evidence is easy to find apparently - in a place called Strasburg in Pennsylvania, right amongst one of the largest Amish population groups in the world, and where Olmstead based his 2005 nonsense. In a centre called the CSC (Clinic for Special Children) Dr. Kevin Strauss advises that he has seen his fair share of Autism amongst Amish children - effectively debunking Olmsted's baseless theory that there is no Autism amongst the Amish because they don't vaccinate.

The reality is that while vaccination rates are lower than the general population, it does appear to be increasing. And it's also true (and I figured this anyway when I first heard about Olmsted's BS) that the Amish are more protective of their children and won't go out into the mainstream for help. That is changing though as a more inclusive style of Amish living is slowly being adopted in order to not fall too far behind the rest of the world as technology takes over our lives.

Autism News Beat did what any good investigative website would and should do. Get into the details. That's what they did (it was there that I picked up this story) and it just goes to show that if you speak to the right people you'll get the facts. Something that Olmsted needs to learn. He's long been a proponent of the thiomersal cause Autism nonsense, and his silence as a result of not only this story so far (ANB have claimed to be in email contact with Olmsted and are waiting for a response) but also to the counter report done by Strauss and fellow MD, Dr. Holmes Morton that was published in the respected New England Journal of Medicine in 2006. According the ANB and Strauss, Olmsted never visited the CSC.

So where did he get his info from? Or was he guessing?

As a journalist, Olmsted fails big time - and any commentary he makes about the origins of Autism should be treated with a grain of salt until he learns the correct definition of "investigative journalism"!

A few corrections from my last comment on this issue.

1. The Hazlehurst and Synder cases WERE about the combination of MMR and thiomersal, like the Cedillo case. Both those cases have now been heard. I haven't seen anything reported about them in any detail as of yet.

2. The date I gave for the closing of briefs was January 15, 2008. That is now February 11.

The hearing in the Hazelhurst case took four days in mid October, and the hearing in the Synder case took five days.

With the two other scenarios (thiomersal causes Autism by itself and the MMR cause Autism by itself) the three test cases are due to be heard fairly quickly. The thiomersal only initial hearing is to be held in May 2008. Hopefully this will give time for a decision to be issued in all three of the initial test cases. The MMR only initial hearing is set for September 2008.

It will be interesting to see how long it takes for the Cedillo case to be ruled on. As the three special masters are handling each case individually, the ruling made on the Cedillo case as an individual case will have no influence on the other two cases. That's a good thing because it avoids any bias. So if all three go one way - that's a major precedent. A decision on the general causation theory won't be made until after all three of the individual cases are ruled upon, but if all three go the one way that decision is a given and it will only take as long as it takes to write the decision up to deliver it.

I am delighted to welcome those readers from the Autism Hub. After a number of delays and the changing of ownership of the Autism Hub I have finally made it onto the Hub. I believe I may be the only Australian ASD person on the Hub, so this is the blog to get the Australian ASD news.

In brief - we have a federal election coming up and further down this blog there is a note about both parties making announcements about the issues of Autism and their response. The election is on November 24. As indicated by the previous message I am involved in the consultation process on the Autism State Plan in Victoria - a precedent setting paper in this country and one that the other states and territories are watching closely. And shortly I'll be looking for an update on the Autism Omnibus situation.

Unfortunately I have locked off comments - this is to head off the distracting habits of the haters we all know. But if you would like to comment, you can go here;

http://philsworld.wiki-site.com/index.php/Contact_Phil

It is not essential to get an account on the Wiki and become a user to edit this page. Rude messages will be removed by myself or one of the other four sysops.

Today I attended the Autism State Plan consultation forum in Ballarat. We had a good attendance of something like 30, including mostly parents. There was only one child there - which was understandable as most ASD children would have found the forum tough to cope with.

The day was basically a brainstorming session for everyone in attendance, where we identified local and general issues and brainstormed solutions. The slant - because of the number of parents in attendance - was towards the education system. I didn't mind that and in my group I commented on my own school experience and I pretty much agreed with the issues put forward.

I also got numerous chances to speak about the issues I had, and at the core of it was the fact that the Disability Services Act didn't recognise ASD's other than LFA. A core component of the assistance structure at present is an intellectual disability (which includes an IQ of lower than 70). LFA qualifies for this but HFA and Aspergers do not.

I also had the chance to educate one mother (of the boy who was there as it happened) and I confirmed her information about the history of Autism and where Hans Asperger fitted in to the scheme of things. I was also able to bing up the issue of information on the Internet and had the chance to mention (as negatives) Generation Rescue, CAN, DAN and Autism Speaks in that context.

When everything was put together I quickly added that adults needed to be looked after as well as children (just to make sure we weren't missed), and I also got to throw in another negative website name just to back up the information issue. Yep - Hating Autism. The general consensus in the room towards the idea of mercury poisoning was gratifying to say the least. A good sign. I think those who heard me on the issue agreed that panic stricken parents are soft targets for this sort of thing. The urgency of early intervention was certainly made plain at our table.

Lee was there for support, and that was very much appreciated as always.

The next step is to submit my case story, which has to be done before December 3. It was said today that they wanted positives as well as negatives - and providing such a balanced view will be hard given positives in my life are heavily outnumbered. There are exceptions of course - such as my 18 year umpiring career, and getting myself a wife. But throwing that on an even footing with Australia Post, the Defence Department and the Internet in particular will be impossible.

It's a chance also to use that same story and probably add it to my Wiki - divided up because of the Aspie Enemy status of AP and Defence. I'm certainly keen to expand the area on Aspergers on my Wiki - but heck I've got enough to do over there already!!!

It is with dismay and disgust today that I report on this blog about the death of an Autistic girl in a small called Hawk's Nest, north of Newcastle. Initial reports indicate that she died from malnutrition. My gut reaction to that is that the little girl just refused to eat - likely because she didn't see the importance. That made me think what the parents were doing, but as I thought about it and heard about what they had tried to do, it became clear that they weren't coping. They tried and sought help from the state government of New South Wales - through their infamous Department of Community Services (DOCS). And the Department let them down.

This is an ASD blog, so I will avoid a rant against the New South Wales government with the history of neglect within the DOCS. This is simply a reflection of the lack of understanding of the serious issues facing the parents of children with an ASD. Especially with LFA. It's not good enough for a public essential service to not do the hard yards in understanding a complicated condition like an Autistic Spectrum Disorder. Not every parent is going to be able to cope and there has to be a back up for this contingency.

This incident on the eve of the forum in Ballarat is timely in it's own way, because it demonstrates the danger of what can happen if the government (and it doesn't matter which state - whether it's Victoria, New South Wales or even Queensland) doesn't do it's job properly. It's a fair warning and it should be heeded by all.

(Note - I have heard that the girl would eat anything since I typed this. That doesn't mean she was eating the right food, or even food at all)

My submission has now been published on the A4 website, along with the submission from A4 convenor Bob Buckley - and also Vern Hughes, the secretary of the National Federation of Parents, Families and Carers (and the former head of the now defunct People Power party).

Vern has disagreed with me that the Plan has identified the major issues related to ASD, claiming that the current system is completely incapable of providing the support needed no matter what. I read that as calling this Plan "window dressing". I can see where he's coming from - but the only way to achieve that is to privatise it, and I'll oppose that with everything I can. Now I agree that there needs to be a massive restructure of the current system (ie the Disability Services Act in Victoria and it's pitfalls in support when it comes to ASD's - with the only one getting support through the current system is LFA. And even then the amount of support is severely limited). But it has to be within the government system. We need to show them the inadequecies and that's what the forum is all about. I hope Vern attends one of them in Melbourne.

That base argument affected the rest of Vern's submission - actually ticking "No" to some points that he identified as not important when in fact they are, simply because of the root issue.

He did make one comment that I agree with - legislative recognition of ASD. I don't agree that an across the board label of disability is appropriate though. Difference (a la other disabilities, gender, race and so on) would be better, and giving individual recognition to each ASD as it's own - which is where LFA (which is disabling to the degree that it should be recognised as such) should be seperated from the others. It's like giving individual recognition to sensory losses as a disability - such as hearing and sight. Giving an across the board label paints HFA and Aspergers in the same negative light as LFA, and I for one won't have that. Even though the root condition is the same or similar - the effects are at different levels. If we don't recognise those differences, one side or the other would be adversely affected. We need balance on this.

Bob Buckley wasn't as harsh on the system as Vern was. He also disagreed that the Plan didn't identify the major issues - but he had a great one that was missed. Human rights. I recall that they did cover that one, but maybe Bob felt it wasn't being treated with enough respect and he saw that as not making it a major issue. Which is fair enough given the problems I've had with HREOC over the years. But he fobbed off service access calling it a "basic misunderstanding" - and I think that's a mistake even though present service access is a joke. I agree with case management on a individual basis, but that still needs eligibility criteria even to a basic level. That's what Bob fobbed off.

Bob is also underestimating DX issues - particularly amongst adults who are self DXed.

But he did make a good point about "points of change". Change of course is alien to a person with ASD, so the less of that the better. I don't think it can be avoided though, especially for children growing up. There are natural "points of change" such as puberty as so forth. As well as the transition from school to work. Sure - make it as easy as possible, but making it "seamless" I think is impossible.

I hope more people are prepared to make their submission public. There will of course be a lot of personal ones, and I will be surprised if any of those make it onto the public domain.

I'm getting fired up for the forum in Ballarat on November 9.

I took a look back at the Autism Omnibus website docket for the first time in awhile, and I took note of the following;

1. It would appear that the decision regarding the Cedillo case (heard in June) will be made at the earliest in 2008. The reason for this is that as part of the procedure both sides must follow up the hearing with brief's. This works the same way as the final comments at a hearing where the appellant speaks first, the respondent replies and the appellant gets the final word. This process is due to conclude on January 15, 2008.

2. Two more cases of a slightly different nature are being proposed. The Cedillo case was about the general causation of the MMR vaccine and thiomersal combined (that aspect is being considered by all three masters, while just one is designated to deal with the Cedillo claim specifically). The other two are seperating the issues - one going after thiomersal and the other going after the MMR. Both cases have hearing dates and the first has already started in Charlotte, North Carolina. I don't know the full name of the subject, but the surname is Hazelhurst. The second begins on November 5 in Daytona, Florida and the surname is Snyder. Both of these hearings concern thiomersal. The theory concerning the MMR isn't going to be heard until later in 2008.

My own reflection on matters as they stand puts a lot on a decision on the Cedillo case, even though it's general causation theory combines MMR and thiomersal. Because it touches on both, the decision by Special Master Hastings on the specific case will carry over to other decisions. This benefits the Hazelhurst and Snyder cases because they'll be heard and transcripted before that decision is handed down - so there won't be any influence. Master Hastings has the task of deciding if the combination of the MMR and thiomersal poisoned Michelle Cedillo resulting in her autism. If he says "Yes" then the contents of the decision will be of interest - whether they slant towards the MMR or to the thiomersal. If he says "No" all other cases are in big trouble unless new evidence can be presented.

Another point of interest - no sign of the Geiers, Brad Handley, Boyd Haley or Lisa Ackerman amongst the expert witnesses to the thiomersal theory. Richard Deth is there though, so hopefully he can be silenced once and for all. I don't know if he will actually appear at either Charlotte or Daytona or not. The witness list does include those who have provided or will provide written testimony and not neccessarily appear at the hearings.

I'm hoping that scientific sanity prevails, and the Cedillo case is thrown out. There is no doubt the parents neglected Michelle by not taking her to hospital when she had a 105 tempreture - the resulting sensory overload that was effectively ignored is what put Michelle in a wheelchair.