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Father knows best?

31 May

Larry made a couple of comments on my last but one post regarding the vaccine/autism link that puzzled me a bit. I thought at the time that he’d missed the point.

Larry is not quite as enamoured of science as I am – fair enough – although he sees the dangers of the anti-vaccine lot he sees a wider picture. Thats what he was trying to get at.

Trouble is, of course, that blogging is not a great medium for seeing a wider picture. Blogs of all kinds tend to hone in over time on a very particular idea. For this blog, its become the poor science sometimes associated with autism. This is inevitable as a blog ‘ages’. I write about this as I feel it is vital to expose the end result of autism related quackery. Injury, abuse and death.

Around the same time, there was a brief flurry about an article concerning Sigourney Weaver’s take on autism, which is refreshingly positive.

I was going to blog this article myself a few times but there was something bothering me about it that prevented me. I click on to what it was yesterday after thinking about Larry’s comments. Here’s an excerpt from the article:

The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, http://www.taaproject.com

So what’s wrong with that? Its great to get a mention, of course it is. But what bothers me about it is that, of the four sites listed, only _one_ is owned and run by an autistic person.

That isn’t right. That’s wrong. Something has gone wrong when the web presence of ‘the movement’ is painted as being mainly non-autistic.

Larry wrote a piece yesterday that elaborated on his thinking.

I am there for the same reasons as I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without us”

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot” they run the risk of effectively taking our voice away, because we are the ones with the condition?

I’ll be frank, it took me aback to think that Larry though that way about the Hub. However, he does and it needs addressing. And as much as I might want to take the easy way out and pooh-pooh it, my mind keeps coming back to that article listing the web presence of ‘the movement’ as mainly non-autistic.

This is not to say I agree 100% with Larry as I do not. I do not think that ‘the message’ should come primarily from autistic people, not parents. I believe it should come from both, equally. However, I believe that the message should be formed by autistic people and those of us who are not autistic should support that message. I also know that Larry’s assessment of the situation in the UK regarding mercury is sadly wrong. It is getting worse, not better and it needs to be actively challenged and fought.

However, I _do_ agree that the science/medical issues are very much secondary to the fight as Larry defines it. I _do_ agree that no parent who claims to be an ally of autistic people should be using the line “but you can speak for yourself my child cannot” and I would be horrified to think that any parent on the Hub _has_ used that line or any equivalent of that line. I _do_ agree with the adage (to paraphrase) “nothing about them without them”.

So what do we do? I cannot ignore this, but at the same time I will not stop blogging about what _I_ care about.

What needs to change? I think the Hub needs some addressing. I have a loose system in place wherein any entry I’m unsure about I refer to two other people, at least one of whom must be autistic for their decisions. If it requires a casting vote then I do that.

Maybe the Hub requires more direct control from its autistic members? How would that happen?

Any other ideas? What else can happen to address concerns like Larry’s?

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

Lenny Schafer’s Delicious Cheap Shot

24 May

It’s no secret that I don’t think much of either the reasoning powers, nor general behaviour, of the collection of individuals that populate David Kirby’s ‘Evidence of Harm’ Yahoo Group. Every time I think they can’t surprise and disgust me more, they manage it.

This is the group of people from which sprung an anonymous email referring to Megan as a ‘little bitch’. This is the group of email who have attacked autistic people viciously and repeatedly. It beggars belief that a group of people who are parents to autistic people could be so disrespectful to autistic people when they claim to be ‘the autism community’. But then, how could anyone expect anything better from parents who refer to their own children as ‘dull witted’.

A member of the EoH group has compared my daughter to a monkey when i described how well she was progressing. This same member later said on his own blog:
….My wife bought too many bananas so I’ll send some for your daughter …..

and followed that up with

…Perhaps you can teach your daughter to swing from tree to tree…

This is ample evidence of the sort of people who infest this particular corner of Yahoo.

However, if more proof were needed, today Lenny Schafer, creator of the EoH Yahoo Group established once and for all the level of disregard for children that the EoH group has.

Schafer posted this story to the EoH list today. It concerns a scumbag who has over 100,000 images of child porn in their posession. As part of this scumbags defence, he is claiming he is autistic. Take a place in line behind Cho, scumbag.

Schafer, however, altered the headline so it read:

Prison Ordered for NeuroDiverse Man With More Than 100,000 Child Porn Pictures

and offered this commentary, accompined with a link to this site:

OK, so I added “ND” to the headline to make it more politically correct for all those mercury apologist ghosts lurking on our list. The ND sword cuts both ways. Sometimes you just can’t pass up a delicious cheap shot. Lenny

A delicious cheap shot.

I’m so very happy that Lenny Schafer finds the idea of utilising the torture, rape and suffering of children as an opportunity for a delicious cheap shot as in any way an acceptable thing to do. Schafer doesn’t like neurodiversity. Thats his right. He should campaign against it as hard as he likes. However to utilise the suffering of children in his demonisation is beyond sick.

Lenny Schafer might want to look to the top right hand corner of this website. In it he will find a picture of four year old Madeline McCann, a baby girl who was abducted from her holiday home three weeks ago. That picture has been on my site for almost a fortnight now. Its on the website of many UK residents.

No doubt Lenny Schafer and the antivaccinationist ignorati who surrounds himself with will pat themselves mightily on the back for getting under my skin so much. Because they have. I don’t think you should ever make light of the abduction, rape and torture of children.

I put up that picture of Maddy in the hopes that maybe – a slim hope – someone who knows something might see it and do something which would mean she was returned to the arms of her parents.

I have also colluded with people Lenny Schafer considers friends in the relatively recent past after it was made known to me that an author of an autism book who was friends with a DAN! doctor was a paedophile. I did this to ensure no children would fall into these people’s clutches.

You made your cheap shot Mr Schafer. I hope you found it ‘delicious’.

Blogging Against Disablism

1 May

Today is Blogging Against Disabilism day, where bloggers are encouraged to:

…write about disability and rail against the discrimination that disabled people continue to face…

Thing is, I do that most of the time anyway :o)

What I want to show you today is how my days with ‘disability’ are spent. I would like people to remember that disability (or ability) is what it is, neither wrong nor right but a state of being that requires its own input and offers its own compensations. We have changed so much since disability entered our lives. Some of it good, some of it bad. Such is life.

However, what has not changed and never will is that I am proud beyond measure of Megan, my disabled daughter. I am also proud beyond measure of my non-disabled children and they are all carried in my heart at all times, my fierce flame of pride and love in equal measure. I want nothing from them except that they are happy and confident and learn to care for each other. The fact that one of them is disabled is meaningless to me in that respect. She is not the same as others but then again – neither am I. No better, no worse, just….different.

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.

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.

Just Sayin’ Part IV

18 Nov

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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