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Autism Omnibus crashing?

30 May

Another few points of interest in the Autism Omnibus proceedings.

Firstly and perhaps most significantly is the defining of the Omnibus proceedings as being at ‘crisis point’ by the Special Masters overseeing the case:

Petitioners were supposed to provide (by their own suggestion) test cases that would show, in the first instance, how MMR and thiomersal working in combination would cause autism. Special Masters agreed to this arrangement and dictated that three cases would be needed. So far, only one out of the 4,700 cases in the Omnibus can be found.

At (the) first status conference in December 20 2006, when the PSC (Petitioners – the parents) first proposed moving to a test case format, Special Master Hastings advised the PSC attorneys that for a ‘test case’ approach to be effective, the PSC would need to offer additional cases, rather than a single test case, for trial. Since that time, the PSC has stated that it will select two such cases, and has represented that it is working diligently on selecting the two cases. At the status conference held on Jan 25 2007, the PSC was orally instructed to designate such cases within 30 days (i.e. by Feb 24 2007). The PSC did not do so. At the status conference held on Feb 28 2007 the PSC representative stated that the teo cases would be designated within seven to ten days. That did not happen. After further discussion, we extended the deadline for designation until March 30 2007. that date, too, passed without any designation. At the status conference held on April 2 2007, the PSC attorney stated that the two cases would be designated on April 6 2007 but no designation was made by that date either We then extended the deadline to March 30, then again May 10, but, still no additional test cases have been designated.

So, out of the 4,700 cases filed under the Omnibus, apparently only one can show a theory about how MMR and thiomersal, acting in unison can cause autism. Which is weird considering that its a ‘fact’ amongst adherents of the vaccine hypothesis.

And how about that one case – Cedillo – what does that show?

…without going into detail, we note that the facts of that one ‘test’ case are fairly unusual and do not appear to be representative of the majority of the cases in the OAP (Omnibus Autism Proceedings).

Good grief. Could it be that, from the 4,700 cases in the Omnibus that there are _no cases_ representative of a general theory of how MMR and thiomersal working together cause autism? Back to the Special Masters – the emphasis in this passage is theirs, not mine.:

We want to stress that we believe we are at a _crisis point_ in the efforts to move the autism cases towards decision. The Office of Special Masters has adopted the approach toward these cases originally suggested by _petitioners’_ counsel and we have patiently waited almost _five years_ to give that approach a chance to succeed…..Either something must change or we will be required to go to a new approach.

And then the bombshell:

In the event that petitioners do not promptly come forward with additional test cases to allow us to pursue the ‘test case’ approach described above for handling the autism cases, it appears that the ‘omnibus approach’ to the autism cases may have to be declared a failure.

That is some pretty direct language. You’ve had five years, it says, we’ve done everything your way. Now shape up or ship out.

Things got worse for petitioners. For years they had been claiming that they couldn’t move forward without certain data (VSD data) being made available to them. It would seem that the Special Masters have seen this for the delaying tactic it clearly is as they have denied this motion.

They have denied it because they (rightly) claim that it is unnecessary and involved a lot of irrelevant data. They also note that petitioners should be able to make a case out of what they have and that petitioners failed to provide a good reason why this data was needed. Special Masters noted:

Finally we note that the PSC itself states that ‘the petitioners could very well establish general and individual causation in these Omnibus claims _without epidemiological evidence_ ‘

That’s what bragging gets you I guess.

Update: Daubert Ruling

The Special Masters also ruled on the applicability of Daubert in the Omnibus cases. Before we discuss that, lets have a brief refresher as to what it is.

Daubert is a legal precedent in the US that essentially makes the presiding judge the arbiter of good science. They _must_ under Daubert apply a very high standard of science. It speaks volumes that Martha Herbert, Boyd Haley, Mark Geier have all fallen foul of Daubert in the recent past. Under Daubert, Haley and Geier’s science was adjudged to be of such low quality that they never even testified – they were barred from doing so.

OK, so. Respondents asked the Special Masters to ensure that Daubert standards were applied to the causation issues in the Omnibus hearings. They even asked that four ‘expert’ witnesses be excluded under Daubert which was a legitimate thing to do.

If the Special Master had agreed with that request than that would have been game over for the whole Omnibus hearing. No expert witnesses = no causation = no case.

What the Special Master has actually done is not quite that, but Plaintiffs should be very concerned. The Special Masters have agreed that Daubert standards should play an extensive role:

I agree with respondent that the principle that scientific evidence must be evaluated for reliability, set forth in Daubert v. Merrell Dow Pharmaceuticals….does have application to Vaccine Act cases.

That is big news. Plaintiffs need to realise that their science is going need to be of the utmost quality. However, the Special masters have decided that this proceeding is procedurally different enough that a small wrinkle should be introduced. This is a non-jury trial. In a jury trial, Daubert can be used (as I mentioned above) to exclude poor quality expert witnesses. This could also happen in a non-jury trial but the Special master has elected to not go that way. What they have decided to do is:

I conclude that the best procedure is to hear the testimony of the expert witnesses in question….I can then evaluate the reliability of the expert testimony in question [in the context of Daubert] and determine what weight it should be accorded, if any.

So, Daubert will apply, but instead of being used to exclude the possibility of juries hearing poor quality expert witnesses, as this is a non-jury trial, Daubert will be applied directly to the proffered testimony of the expert witnesses.

Whichever way you cut it, this is not good for Petitioners. They were staunchly opposed to the Daubert standard being applied at all as they knew it would mean that scientific standards of proof would apply. Standards that Boyd Haley and Mark Geier have already failed to meet in previous thiomersal/autism cases.

How long will it be?

19 Apr

The demonisation of the disabled has always been with us. The purposeful assigning of negative characteristics in order to worsen a case or point of view. Sometimes the people doing this are the very parents of the disabled people in question. Autistic kids have been called ‘toxic train wrecks’, ‘walking nightmares’, ‘unreachable’, ‘soulless’, ’empty shells, ‘dead inside’.

So, I have a nasty fear, shared by Asperger Square 8 and MOM-NOS that at some point, the murderer of several teachers and young people in a gun rampage in Virginia will be diagnosed by the media as autistic.

Here’s one media description of the murderer:

He was always really, really quiet and kind of weird, keeping to himself all the time,” he said. “Just of anti-social, didn’t talk to anybody. I tried to make conversation with him in August or so and he would just give one word answers and not try and carry on the conversation.”

Sound familiar? Yeah.

Or maybe he was just rude and didn’t like people. he did, after all, kill several of them.

On the EoH yahoo group one poster says:

Wonder if they can run that urine test polyprophilin???? on him for mercury poisoning. I bet that kid is toxic as all get out.

John Best chips in with:

The article says he didn’t make eye contact with his room mates and didn’t acknowledge people greeting him. That sounds familiar.

And when otehrs expressed skepticism that the murderer was on the spectrum, John explained why he wanted him to be:

If he was on the spectrum, then the shooting becomes the fault of Neurodiversity for encouraging him to celebrate the difference instead of getting cured.

Nice. Forget that people have been killed here, lets twist this to get at a group of people we don’t like. How respectful.

Thankfully, Erik put John right:

John, I hate the neurodiverse philosophy of no treatment/no cure, you know that. But what you’re saying is way off base.

But isn’t it amazing how even the parents of autistic kids are so very willing to see their own kids as similar to this murderer? Amazing and scary.

Also on EoH yesterday, a poster posted this link (warning – not nice) which is a petition to ‘kick out autistic retards from America’. The poster described how horrified she was by this petition. Me too. Its appalling.

But look at the wording of the petition:

In the past 15 years autism and mental retardation rates amongst children has skyrocketted. One out of every 100 children born in America is either retarded or autistic. Soon autistics and retards will make up 30% of the American population (and that’s a lot.) They do not deserve to live in America, not to mention that they take our tax dollars and our welfare money because they require special education and can’t work beacause they can’t communicate. Taxes will go up drastically in the next 20 years because of them.

Epidemic rhetoric, financial cost epidemic and demonisation. In a slightly differing context, I could easily have been reading a press release from the National Autism Association or the mainstream media.

If you have popularised the epidemic rhetoric, if you have popularised the financial cost rhetoric against autistic people then please know that you are not too dissimilar from this odious individual.

Autism should not, ever, be demonised in order to score political points. There is _no evidence_ to support the idea of an epidemic. There is _no evidence_ that autistic people are crazed killers. How is this advocacy? How does it help?

History repeating itself

4 Apr

A recent story from the Canadian (thank you jypsy) Globe and Mail tells us:

Each child diagnosed with autism will accrue about $3.2-million (U.S.) in medical and non-medical costs over his or her lifetime…

The story leads off with this fact and continues with such vitally important things as:

“But we need to ask the question: Does investment early on have significant economic benefits later?” Dr. Bryson said.

Vital, I think you’ll agree. How about this one:

Earlier research estimated that autism costs the U.S. economy about $35-billion annually, and the Canadian economy $3.5-billion.

Wow. So this must be what it feels like to actually have a price on your head.

Anyway, this reminded me of something, this talk of money and the idea of people having a monetary value. Then I remembered:

The english translation reads:

60000 RM, this is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow German, that is your money, too.

This was used to promote Hitler’s T4 Euthanasia program.

Maybe its just me but when people start using identical rhetoric to the Nazi’s I get a little bit nervous.

New: Autism Parents Forum

25 Mar

I’m launching a new project today primarily for parents of autistic children (of any age) which I’ve called Autism Parents.

I wanted to set up a forum where parents of autistic people who weren’t necessarily interested in the idea of cure could get together and swap hints/tips on parenting in an easier format than a blog could allow.

Its got boards for education, medical, officialdom where you can ask questions or answer questions from other parents just like you and me as well as boards for discussing books/movies/TV programmes and news stories etc related to autism.

Please go and signup, get posting and please – spread the word!

Harold L Doherty – at it again

26 Feb

Harold Doherty last week built himself an army of strawmen in order to demoinse the neurodiversity movement. I and many people left comments that were never published so I wrote the above linked post to demonstrate to Mr Doherty how illogical, ill-thought out and just plain old wrong his points were. He never responded but it seems Mr Doherty is never one to let a little thing like accuracy cloud his opinions.

Today I see a post entitled ‘Is The Neurodiversity Movement Ashamed of Lower Functioning Autistic Persons?’ to which the short answer is ‘uhhh, no – whatever gave you that idea?’

Luckily Mr Doherty proceeds to tell us what gave him that idea. Strawmen ++

It seems at times that the Neurodiversity Movement is ashamed of the lower functioning members of the autism world. Autism is defined by the ND movement as simply another natural variation of human wiring.

No it isn’t. That is one _aspect_ of what autism is.

“Autistic intelligence” is defined as a different, perhaps even a superior form of intelligence.

Might be. There seems to be good evidence for extraordinary mental skills in some autistic people.

Doubt is cast on whether lower functioning autistic persons even exist by the more strident ND’ers.

Really? Where? Who says that?

Even autistic persons who have demonstrated no communication skills, engage in seriously and repetitively self injurious and dangerous behavior should not be treated or cured in the view of the ND movement.

Ditto. At some point Mr Doherty you’re going to have to start _providing some sources_ – all this alarmist arm waving is mildly entertaining but ultimately just silly and self defeating.

Recently CNN’s Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message – even low functioning autistic persons are really quite intelligent and do not need a cure or treatment.

Nothing at all was implied. It seemed quite clear to me. Amanda does not need a cure. I believe she has had some treatments of mixed efficacy at various points in her life. Your implication seems to be – and feel free to turn up and correct me if I’m wrong – that silly old Amanda can’t possibly know what’s good for her and she can have no empathy with other low functioning autistic people, whereas the Great Mr Doherty knows all. He knows for example that silly old Amanda doesn’t know what’s good for her.

Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.

Yeah, or maybe we could discard the conspiracy theory and conclude that this particular piece wasn’t about that aspect of autism?

My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly.

I wonder how Conor feels about that and whether Mr Doherty would care?

Anyway, the point is that no one I know is ashamed to admit the severe challenges autistic people face in life. In fact, that’s kind of the point. To highlight these kind of things. Here I’ll say it in the plain English that I reserve exclusively for people incapable of appreciating shades of grey:

Autistic people face severe challenges in life. I am not ashamed to admit this publicly. I am however, afraid to talk about them publicly because when I did, various people who wanted to cure their kids were vicious about her. So now I and my wife talk about her in a private closed access blog which is open to friends and family only.

Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion.

I love accusations of censorship that come from men like Mr Doherty who actively censor their own blogs and refuse to participate in debate. Its always good for a chuckle.

I _think_ Mr Doherty is alluding to the revulsion some of us have for Autism Speaks and their one sided propaganda piece ‘Autism Every day’. We don’t want to censor it Mr Doherty. We (all 748 – so far – of us) want to expand it to truly reflect the reality of ‘Autism Every day’. Not just the self pity bits. If you don’t want these parts included then I think you need to carefully look at how that holds up against your accusations of censorship.

Reversal of Rett Symptoms

9 Feb

Reversal of Neurological Defects in a Mouse Model of Rett Syndrome.

Rett Syndrome is an ASD. My friend Kassiane has Rett Syndrome. I would bookmark her blog as I’m sure she will want to talk about this.

Yesterday, the news was published that claimed that symptoms of Rett Syndrome had been reversed in a mouse model of Rett. It seems like decent enough science and yet all the news reports I’ve seen are encouraging very worrying responses in some people.

First, lets go through the science at a level people like me can understand it.

Rett is ’caused’ due to mutations in the MECP2 gene. In simple terms what this paper described was the science team attempting to emulate Rett in mice and then turn on the MECP2 gene to see what happened. One of the things that happened was that in roughly half of the mice they did indeed reverse the symptoms of Rett.

This paper has made it into the Schafer Autism Report already. It is also being discussed on the Autism Yahoo Groups with a view to possibly extending these findings:

Is any one going to contact them in regard to our children’s symptoms?

Posted yesterday to the Autism-Mercury group.

What is worrying to me is two things. First is the applicability of this work to humans. One of my science guys whom I rely on to translate this kind of stuff said:

Simply put, this paper is good work, but it’s a headline job because it has no applicability to humans; this paper simply validated Zoghbi’s work.

That’s worrying enough but in a world inhabited by the likes of Rashid Buttar, the Geier’s and various others who leap from madness to madness in their frightening treatment regimes is the second and much more truly scary aspect of this paper that no one seems to be discussing.

I said above that in half of the mice Rett symptoms were indeed reversed. What about the other half?

….prior to symptom onset, revealed toxicity associated with abrupt Mecp2 reactivation as 9 out of 17 mice developed neurological symptoms and died….The data indicate that sudden widespread activation of the Mecp2 gene leads to either rapid death or complete phenotypic rescue.

This is quite literally, kill or cure.

I have a really horrible feeling that certain ‘doctors’ are going to be chasing this like a dog with a bone – already the Yahoo Groups are asking for details. No one is discussing this ‘detail’. A little bit of restraint is very much what’s required here.

UPDATE

Its begun already. Sallie Bernard posted a comment from Richard Deth on the Autism-Mercury group:

The just-published study shows “Rett syndrome” can be reversed in mice, lacking MeCP2, which binds to methylated DNA. Reversal was accomplished by turning on MeCP2 after symptoms (neurological and obesity) were fully developed. The important point is that an abnormal pattern of gene expression, due to interuption of the methylation-dependent epigenetic mechanism, can be reversed if the methylation-dependent epigenetic mechanism is brought back to normal.

The parallels for autism are clear. If impairments of methylation-dependent epigenetic regulation, caused by oxidative stress
rather than MECP2 deletion, can be reversed, then recovery can occur.

No mention of the rather important details that the reversal killed half the mice, instead just a comparison of this decent science with his own brand of poor science in order to lend it weight and credibility it doesn’t have,

David kirby plays the segregation game

3 Jan

A truly fascinating start to 2007. David Kirby writes a blog entry entitled ‘There is no autism epidemic’. Why is it fascinating? Two reasons. Firstly, it reveals the lengths David Kirby is willing to go to shift goalposts even further. The entire entry is replete with strawmen arguments. An example – in his opening paragraph, Kirby talks about being vilified by people who who believe that autism is a stable genetic condition and then names the neurodiversity community as amongst his most spirited detractors.

Nobody I know who shares the opinion of neurodiversity believes autism is *only* a stable genetic condition. However, unless we want to throw out what we know about Rett Syndrome then we do have to accept that some of the spectrum of autism is indeed a genetically based condition.

He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children.

Here’s how Kirby sums up ‘the neurodiverse’:

Most of them, I believe, have what science calls “Asperger’s Syndrome,” or very high functioning autism. From their eloquent and well reasoned point of view, autism has no “cause,” and it certainly requires no “cure.” To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

No.

Time and time again, the people I speak to who are autistic and who are sharers of the opinion neurodiversity expounds tell me that as children they either were not diagnosed at all and left to rot or diagnosed with low functioning autism. How do I know this? I asked, Mr Kirby, and then I listened to the answer. I didn’t make up any old opinion that suits my argument better. Some, like Amanda Baggs, still _are_ considered low functioning. My Great Uncle was ‘low functioning’ and my Great Aunt was ‘high functioning’ – both were born way before thiomersal was ever around by the way. My Grandma said that her brother-in-law was ‘much worse’ as a child than as an adult. As adults they were able to converse.

The first part of Kirby’s post sets up the second. He is attempting to dismantle the idea of the autistic spectrum and at the same time, corral all ‘the neurodiverse’ into a place where they cannot speak about autism. Here’s the filibuster part of his post in full:

But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse.”

I am talking about kids who begin talking and then, suddenly, never say another word.

I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.

I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.

I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).

I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I’m talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don’t believe they have “autism.”

Woah! My daughter very rarely speaks, she’s just on the cusp of learning to write, she can’t tie her shoes, she wakes up regularly in the night (on New Years Eve she got up at half past midnight – not 3am) but she is distinctly burning coal free, she tolerates certain foods very well and refuses to touch other foods, she used to smear faeces regularly on both the carpet, the walls, her bed, us, the cat and she’s had the odd bout of diarrhoea (no one said autism was pretty, right?) – she’s pulled out of my hand on occasion and ran and I’ve followed, heart in mouth, she sometimes has the odd pinch or smack at me if I’ve told her she can’t have something, or I’m not getting what it is she wants, she loves to spin – and bounce (have you see my video Mr Kirby?) and she used to be non-social completely.

So yeah, I know what you’re talking about. Guess what? Its still autism. I still love her just the way she is. I still don’t want to change anything about who she is. I’m happy for her to be autistic.

Here’s what *I* think.

I think you’re goalpost shifting again Mr Kirby. You don’t believe they have autism? So what was the last two years about? Why the constant harping on about the CDDS until it stopped showing you what you wanted it to? Why the sudden panicky need to dismantle the idea of a spectrum of autism? Why redefine? Is redefining easier than explaining why your hypothesis isn’t panning out?

And what’s this about?

Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

Sounds suitably scary but a) has nothing to do with autism and b) would appear to be partly wrong. And what about this:

There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Wow, is this an admission of error? From stating a belief that thiomersal caused autism you are now suggesting that ‘some things’ are making ‘children sick’ – that’s quite a change of heart. Why? Is it so hard for you to say – ‘guys, I was wrong. Back to the drawing board and I’m sorry you wasted your hard earned dosh on my book’.

Here’s something for you to read on the subject of neurodiversity Mr Kirby, I hope the point doesn’t escape you.

On May 19, a small group of people with Down Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time that people with disabilities have spoken out publicly about prenatal screening. Their protest opens up the debate about genetics, eugenics, and the rights of disabled people.

As a result of the protest, the conference organizers allowed Anya Souza to speak from the podium, a platform her group had previously been denied. Ms. Souza, a trustee of the Down Syndrome Association who is labeled as “suffering” from the condition herself, told the doctors why she opposes the screenings.

The protesters found it unacceptable that doctors would discuss better ways of preventing the birth of people with Down Syndrome while excluding the voices of people with that label from the debate. That runs, they said, directly counter to one of the main demands of the disability rights movement: Nothing about us without us.

“We are what we are,” Gilbert [another protester] concluded. “Ask our opinion.”

Do you get the point(s) Mr Kirby? What you are doing by pretending that AS and autism are two different things is taking away the opinion of autistic people. You are doing it without evidence that you are right, without anything other than a ‘hunch’. An MO that is becoming more than a little familiar. You are following the proud tradition of Lenny Schafer and Rick Rollens, who also want to stop autistic adults talking about autistic children being OK just as they are.

Be brighter than them Mr Kirby. Try and understand that no one advocates letting kids suffer painful medical issues but that these things do not, and never did, equate to autism. What you’ve taken away over the last two years from both these adults and the kids of those you call friends and those you don’t is dignity. Nothing about us without us.

Update: Kristina weighs in too and Joel writes a first class piece on proving one is broken. Diva gives us good instructions and spotting autistic people and Do’C and Jospeh ferries across a river of shit.

Australia – bad for autistic people

29 Nov

Recent events in Australia seem to indicate that if you are autistic then it would be a bad place to be. For a start, you can get away with murdering autistic kids.

Daniela Dawes suffocated her 10-year-old son, Jason, at their western Sydney home in August 2003, before attempting to commit suicide. She was placed on a five-year good behaviour bond after pleading guilty to manslaughter.

No prison time whatsoever for killing her son. Of course, it was good to see that the Australian legal system had its priorities right:

Handing down his findings on October 13, Deputy State Coroner Carl Milovanovich said the case was one of the more difficult he had dealt with. He said that, aside from the “tragic outcome” of the boy’s death, there had been a family breakdown and domestic violence. “Perhaps professional, timely and appropriate resourcing at an early stage may have avoided many of those outcomes,” Mr Milovanovich said.

Yeah, perhaps. Now how about legal justice for Jason? Or doesn’t he count?

And how is poor, poor Ms Dawes doing now? She’s still finding time for the odd threat:

Asked about how she was coping with the loss of her son, Mrs Dawes said: “Every day is an absolute struggle. My boy should be with me and the reason that he’s not is a result of my depression. The unfortunate case here is that parents that are struggling with disabled children do suffer depression and there is a strong possibility that this tragedy could happen again.”

So, confirmation that in Australia at least, you literally can get away with murder. Sickening.

But then, why should we be surprised? The disposable nature of disability was emphasised at the highest level of Australian government recently when Federal Community Services Minister, John Cobb MP:

…..told a group of people with disabilities that if he had a disabled child he would send it to live in an institution

Queensland Advocacy chief Kevin Cocks, who was present, claimed Mr Cobb said that “if he had a child with a disability and it was going to cause stress he would get rid of it”. “He said he had lots of children in his family and if he had a child that would cause stress he would get rid of it – they were his words,” he said.

People with Disability Australia president Heidi Forrest said she left the room in tears.

“I’ve got a child with a disability too,” Ms Forrest said. “I love my son and that was kind of saying that I’m no good for trying to have my son.”

Ms Forrest said the meeting was held to discuss advocacy for the disabled, not “shutting them away or picking and choosing who you want to live in our society”.

“Our concern was that if what he said is indicative about what the Government thinks then we’re in a lot of trouble,” she said.

I think Ms Forrest is absolutely right – Australia is in trouble. John Cobb (who’s email details you can get on his contact page) seems to have sanctioned the belief that disabled people are surplus to requirements in Australia. If only there were more fine, upstanding citizens like Daniela Dawes then Australia wouldn’t have to worry any more.

What the future holds

23 Nov

A recent MSNBC piece on autism entitled ‘growing up with autism’ was a well written, well researched and responsibly written article. It highlighted a worry that all parents of autistic kids have – the future. What happens when our kids become adults?

“Once they lose the education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America…

The same is true over here in the UK as well.

The much discussed Combating Autism Act was to allocate US$1Billion to research and:

Grossman’s early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn’t try to take on too much…

A ‘consortium of activists eh?’ – lets not beat around the bush here. This consortium was the mercury militia – A-CHAMP, the NAA, SafeMinds, Autism Speaks, Generation Rescue etc. They wanted the money to go on research searching in vain for a link between thiomersal/MMR and autism. It didn’t quite work out that way, but its painfully obvious that they did manage to scupper the dire need of helping autistic adults.

However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority

Yeah, right. I’ll believe that when I see it.

There’s a whole bunch of people here who need to wake up to reality. Autistic adults have been in existence for any number of decades. My great aunt and great uncle, both born before 1920 were amongst them. The Autism Hub has some of them. They had no services beyond institutionalisation. Autistic adults currently have little to no services. This is not a new scenario and it behooves this ‘consortium of activists’ to put aside their short-sighted, unscientific agenda and step up to plan for the future. A mad dash for a non-existent cure helps no one except the quacks who’s pockets are lined.

So what could help? Well, Lee Grossman’s 30 page document would’ve been a start. The other thing of course is challenging perceptions.

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays the cello and who’s smart about animals.”

The more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”

We need to start taking a long term view. This won’t be pleasant for some sections of the community to accept but we must stop looking at autism that something that affects children primarily. We must stop the headlong rush into dangerous, unproven ‘treatments’ that do nothing for autism and start looking at realistic ways we can move society and autistic people closer towards each other. We must start demanding more responsibility of those who elect to paint themselves as authorities on autism and then proceed to dehumanise autistic people with words like ‘poisoned’ and ‘epidemic’ and ‘train wrecks’. We must start to look skeptically at autism organisations who are actually single-issue groups promoting quackery.

We must start to listen to autistic people – adults – about service provision, about the future of autism advocacy. The one certainty in life is that children become adults. To ignore this issue is tantamount to burying one’s head in the sand.

What Is Neurodiversity?

10 Nov

A new Yahoo Group called ‘What Is Neurodiversity’ is launched today. Here’s the front cover blurb:

The purpose of this group is simple – to discuss what is and what isn’t neurodiversity. There are no formal principles or rules but there is a lot of (mis)information about what neurodiversity is and what it means on a realistic basis as well as a principled basis. Hopefully this Group will serve to set the record straight.

This group will be open for anyone to read and anyone to join. Any questions can be asked and those who feel like answering, will. All we ask is that as much as possible we keep the tone polite and the discussion constructive. I know this is difficult when discussion gets heated but we must try.

Off -topic posting is actively discouraged. Trolls will be removed immediately and permanently.

If you’ve wondered what it actually _em_ , or if you already have an idea or an opinion – good or bad – then please turn up to debate. The purpose is not to set any guidelines or formal declarations but really just to debate what neurodiversity means to people and hopefully to alleviate any misconceptions.

Everyone – and I do mean everyone – is welcome. No one will be ejected for disagreement but the emphasis in terms of tone of discussion needs to be polite and constructive.

Come on over :o)

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