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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)

Selling autism

4 Nov

It’s no secret that the Pat Sullivan’s are probably not career rocket scientists – they sell dietary supplements among other things on the internet. They probably lack understanding of even some very basic aspects of autism in my opinion but they seem to have remained benign and polite for the most part. No matter – I’m not a career rocket scientist either. I’d also like to state that I like both Pats. They always make an effort to go to the source which I find admirable.

Which is why I was disappointed by a couple of recent posts on the Sullivan blog.

Pat Jr. posting recently took issue with a post from Autism Diva which described a mercury mum as saying:

Dr Quig [Vice President, Scientific Support for Doctor’s Data Inc. lab] who sees zillion Doctors Data reports had some interesting comments: like TD-DMPS is not transdermal because it doesn’t trans the dermal! Suppositories and IV are generally more effective. He mentioned that none of these really penetrate the blood brain barrier.

Pat got in touch with Buttar to ask him about this. Apparently Buttar was pissed off in the extreme about it. Then Pat found out Buttar spoke to Doctors Data who profusely apologised and explained that:

Dr. Quig was merely saying that TD-DMPS is not good for challenge testing, something that Dr. Buttar fully agrees with. TD-DMPS is a therapeutic chelator that has the advantage of being able to remove metals slowly. But it’s the least effective for challenge tests

Uh – so? Quite aside from the point that the whole issue of challenge testing is fraught with bullshit, Quig never referred to how good or speedy a chelator TD-DMPS was, he said it didn’t work at all. Two very different things.

I’ve recently been having an email exchange with someone who was at one time very close to Dr Buttar’s practice. This person had some very interesting things to tell me about the way Buttar allegedly does business. Maybe Pat or Kevin Champagne could ask Dr Buttar personally just how much his clinic pays for the initial DNA testing he insists all new patients undergo? My source claims that he charges between $200 – _$900_ for these tests. My source further claims that these test kits are provided to Buttar’s clinic _free of charge_ from the test labs. If that’s true, then that’s a hell of a markup. Not illegal by any means but certainly very, very questionable ethical behaviour.

I was then saddened and disappointed to see the Sullivan’s start to market actively to their site visitors:

Now, I have been very, VERY careful not to ever advertise Jigsaw products to the autism community because I felt like it would give my opponents the ability to marginalize my arguments.

Possibly, but much as I like them, I’ve never found the Sullivan’s arguments to be critically thought through or scientifically supported. Possibly in an entry I’ve not read there is something.

Following that, is a paragraph about how a blogger who went to an autism conference listed a bunch of dietary supplements that, by a remarkable coincidence the Sullivan’s also just happen to sell – and are helpfully more than happy to list with clickable links to information and direct purchasing options.

Pat Jr. continues:

“So I guess this breaks my silence on marketing to the autistic community. Sorry.”

That made me a little cross. To the “autistic community”? It’s obvious that at least one Sullivan is maybe either a careless writer or apparently doesn’t understand the difference between “the autistic community” (that would be made up of autistic people), and “the autism community” (the larger community that includes parents of autistic children with money to spend or legally able to incur debt).

Sorry? What no, “we want to earn your business,” or “your satisfaction is our goal.”? All they can offer is a, “You’re a target, sorry”? Of course their motives are irrelevant. They are in business to make money. They’ll probably treat their “marketing targets” according to a business plan. In reality, their intentions say absolutely nothing about whether or not the vitamins, herbs, and lab tests they apparently re-sell do anything (or nothing) for for autism, the autistic community, or the autism community.

In fact, the reason we got involved in the autism debate to begin with was because of the near perfect parallel Pat experienced. It’s also the reason we started the Jigsaw Health Foundation with the sole purpose of providing financial assistance for mercury amalgam removal.

Is Jigsaw health going to contribute to the “autistic community” in some real way? There are
probably schools in your country that could use funding assistance and many families who need in-home education services or other assistance. There are probably autistic adults who need living or employment support services. There might even be valuable autism reasearch somewhere over there. Wouldn’t that contribution be more valid than removing peoples fillings?

As I say, I like the Sullivan’s (even though it states in my ‘evil neurodiverse’ contract I shouldn’t) but I found this glib explanation of Buttar’s skin cream and the follow up targeted sales-speak a little much.

On being considered retarded

1 Nov

Since my daughter was diagnosed, a vast range of people have aided my comprehension about some aspects of autism from a first hand perspective and have enabled me to try and apply the wider lessons from their experiences into how I interact with my daughter as an autistic person.

To me this has been the most invaluable benefit of the Internet and one that simply wouldn’t have been possible without this particular technology. Recently, technology has moved beyond words and into moving video. This has enabled some of the people I hold deep liking and respect for to let us more fully hear their opinions and thoughts.

This is vital. I fully subscribe to the idea of ‘nothing about us, without us’ which means that any organisation that purports to speak for autistic people should _fully include_ autistic people. Until now, such organisations have been able to cling to the lie that autistic people cannot hold opinions or speak for themselves. This perception is now being actively challenged.

When I first started Autism Hub, there were a number of people who topped my ‘most wanted’ list. The people I really wanted to be members. This list included Autism Diva, Joel Smith, Jim Sinclair (still not managed that one!) and Ballastexistenz aka Amanda Baggs. Autistic people who are also great teachers.

Amanda has been of particular help to me and has (is) helping me see autistic rights in the wider context of disability rights, helping me move beyond a solely medical view of autism and above all else helping me see ways I can help my daughter. Maybe not right now, but as she ages. She’s not doing this by strategies or by being a walking, talking exhibit but simply by allowing me (all of us) to read her blog and now to view the video’s she’s made and will, I hope, continue to make.

The latest one is my favourite so far. In it, Amanda talks about being considered retarded and how first impressions only really alter depending on the person doing the ‘percieving’. Amanda starts the video by saying:

People often ask me what it’s like being considered retarded, or being ‘trapped in a body that looks retarded’

This implies that retardation (what UK people call ‘learning difficulty’) is an inherently negative state and that one should not want to ‘look retarded’ or at least should be ashamed of having an appearance that resembles that of someone who is considered to _be_ retarded. One of the commenters to the video Amanda made was that ‘you don’t look retarded you look perfectly fine’. That entirely misses the point I think Amanda was trying to make; that it’s a fact that looking retarded _is_ perfectly fine. There should be no shame or inference of shame in ‘looking retarded’. To infer otherwise is deeply insulting to a wide range of people who carry that diagnostic label and should not be trotted out as a back-handed compliment.

Amanda is self-honest in an age when self-honesty is almost totally absent. Where celebs trot out fashionable ailments like binge drinking and check in for extended stays in celeb-clubs like The Priory Clinic, Amanda states quite happily that yes, she looks retarded and yes, in some areas she _is_ retarded. She’s quite happy with that and why not?

Amanda has mentioned in the past the bizarre change in attitude to her that people undergo once they know she can type. When they first see her, they think ‘retard’ with all the negative connotations that _society has saddled that word with_ and never consider that maybe ‘retard’ isn’t something to be used with disgust, or with pity. Amusingly, once they learn she can type she suddenly stops meeting that criteria in their eyes. Instant normality! Just add keyboard!!

Amanda stims, she flaps her hands, she uses a talking keyboard to communicate. But she doesn’t only become normal after the third item in the previous sentence. She’s always normal. And autistic. And if we’re talking about the speed she can process some information sometimes, she’s also retarded. Retarded is another word for ‘slow’.

We have to be careful though to clearly explain. Society has attempted to load the word ‘retard’ as an insult. It is not OK to use ‘retard’ as an insult. It should be OK to be considered retarded if one truly is however. Amanda’s strength here is de-clawing the loaded connotations of the word ‘retarded’.

And speaking of de-clawing, look for starring role of Amanda’s cat ;o) . Here’s the video:

Too far – attacks on autistic people

30 Oct

The level of debate continues to sink from the mercury militia. In various places over the web this past week or so, parents who believe vaccines caused their kids autism sunk about as low as you can get. They attacked autistic people – the same ‘sort’ of person their child is. And why? Because they don’t agree with what either they are saying or their parents or saying.

AutismWeb Forums

Over on Autism Web forums, Amanda was vitriolically attacked by two of the less stable members – sashasmom and respect (hilariously ironic username). She was attacked because she essentially suggested that death-threatening angry responses utilised by parents are not a good way to progress. This prompted sashasmom to question her autism and deride her sexuality to the point where the moderator edited part of sashasmom’s post.

It led ‘respect’ to label her input as ‘drivel’.

The hysteria on display here is incredible. If someone says something you disagree with its entirely possible to disagree with the idea and remain respectful. The notion that these two posters (both not autistic) know more about the experience of autism than Amanda as they have implied throughout her tenure on AutismWeb forums is both pathetic and laughable. Their voices are simply echo’s of ex-AutismWeb member Srinath, who called another autistic member a retard.

I personally find it deeply worrying that these people consider themselves part of any autism community.

But of course, however low one person can stoop, we all know another man from New Hampshire who can stoop lower.

John Best at AWARES

John has developed what seems to be an unhealthy interest in my daughter. I find it incredibly disturbing. More so than I can possibly convey in writing. I don’t give a stuff if he or his crowd insult me personally, I’m a big boy – but time after time he has seen fit to abuse my daughter. Who can forget his charming comparison of my daughter to a trained monkey:

My wife bought too many bananas so I’ll send some for your daughter

which came about as a result of me detailing her progress (the crime being of course that she’s progressing without chelation/ALA/megadose vitamins or HBOT).

Well now he’s stooped even lower. This years AWARES conference is well under way. John has apparently changed his stance from last year where he stated that AWARES was a made up conference solely to trap him (John has a little problem with ego and reality) and decided to attend again this year.

This time though he joined up with the username ‘Megan Leitch’ and made numerous posts abusing autistic members of the conference and pushing chelation as the only cure. When I was made aware of this, I contacted the conference administrator and after satisfying himself that what I was saying was true, he deleted all posts from that user and deleted the account.

What sort of utter coward _assumes the identity_ of a six year old autistic girl? I am in two minds at whether to follow up on this legally. I’m not sure what constitutes identity theft in a legal sense but I intend to find out. But of course this goes far beyond identify theft. To anyone with an ounce of morality, posting in the name of a child to further your own agenda is so tasteless that I don’t think there are adjectives to describe this particular act. Assuming the identity of an autistic child because you don’t like the child’s father or what he has to say is…..disturbing….

John has demonstrated moral ambivalence of many occasions, including telephone threats to women:

Lisa; Should I have Tim call you again to teach you some basics about autism that you’re incapable of understanding?

And a general dislike of women, whom he considers less intelligent than men:

Women will never be more intelligent than men although they may be smarter than men who won’t stand up for themselves.

Although it seems his wife came close to acting intelligently until John brow-beat her into submission:

I also have a wife who took two years of prodding before I could begin chelation. I finally started in May. We were also close to divorce…

And John’s approach to parenting his kids, seems to reflect his moral ambivalence to other children:

50mg 0f seroquel has worked for my son since age 5. It takes a while to knock him out but he is always tough to wake up after 8 or 9 hours of sleep. We use benadryl or waldryl(half the cost) once in a while to help knock him out sooner. We have now had two years of sleeping every night after three years of virtually no sleep. Good Luck

Seroquel is an antipsychotic neurole[ptic similar to Risperdal that:

..is indicated for the treatment of acute manic episodes associated with bipolar I disorder and the treatment of schizophrenia.

On Josephs blog post I linked to above, John got into a protracted debate with Jannalou who takes medication for ADD and told her that the medication was causing suicidal thoughts and constipation. Apparently, John has never read the fact sheet on Seroquel which states that it can cause suicidal feelings and constipation. It further states:

The safety and effectiveness of SEROQUEL in pediatric patients have not been established.

No matter how I feel about John, I would _never, ever_ stoop to assuming the identity of his son or making comparisons between his children and animals.

I see John is trying to ‘recruit’ Maria Lujan on her new blog – this is the same person of whom he once said:

I don’t believe Maria Lujan is real, nor do I beleive Not Mercury is real. I think they are just identities that your side conjured up

(Source above).

Thankfully, Maria is far too intelligent to be taken in by a low brow thug like John Best. John however, is not intelligent enough to remember the fact that he abused someone before trying to wheedle his way into their life.

There is something very, very wrong with a person who would assume the identity of a six year old girl. I can’t imagine anyone other than John’s most recent crop of neophytes thinking otherwise. In fact, I don’t event think all of them would like it.

John likes to call people who don’t chelate child abusers. I wouldn’t call John a child abuser but I’ll leave you to formulate your own descriptions of a man who feels no qualms at abusing the identities of children.

What has autism ever done for us?

23 Oct

I was reading this article the other day where a therapist was detailing her attempts to reconcile a couple on the verge of splitting up due to the horror/abyss/hell/tsunami of autism. Its pretty depressing reading.

It’s a common refrain – how autism has affected someone’s life. Usually there’s a long list of how finances, relationships and life generally have all suffered since the diagnosis entered their lives.

To me, its all about how you approach the issues. Are you someone who sees the glass as half empty or half full? These were definitely half empty people.

I’d like to describe how autism has affected my life.

My wife and I will have been married 10 years next year. Something I consider quite an accomplishment in this day and age. We’ve had a lot of difficult times and rowed often. When Meg was diagnosed we were stunned, angry, hurting. However as we came to accept, we started talking to each other more. We started to back each other up more. We started supporting each other better. Autism didn’t only bring us a beautiful little girl, it brought us each other in a new way.

Naomi and I used to be members of a parent-oriented autism forum. There were a few good people there and a few drama queens. One couple used to complain that they now only managed to get away three or four times a year with each other for ‘little weekend breaks to Prague’. Well, boo-hoo. Poor them. I heard later that the husband of this couple had a nervous breakdown due to the stress.

Right. I hear less than five weekend breaks to Prague per year can do that to a man.

Please note: I’m not belittling anyone who genuinely has had a nervous breakdown. This guy whoever, was (is?) a primadonna without equal.

The last holiday Naomi and I had was our honeymoon. And I couldn’t possibly care less. Naomi has had a couple of breaks with the kids and her parents whilst I stayed here and worked as we couldn’t afford not to be earning. Whenever I hear biomed parents crying over the cost of all that TD-DMPS I roll my eyes and think of that old adage about a fool and their money.

Naomi and I watch DVD’s together, we talk together. We spend hours chatting after the kids are asleep. When we feel like celebrating, Megan and I walk into town, I buy some nice grub, a bottle of wine or three and after the kids are asleep (assuming they go to sleep) we put on nice clothes and have our nice meal with the TV off and the lights down. If Meg’s having a bad night, we take it in turns, a few hours each, to sit with her.

If Anthony’s over for the weekend then we sometimes play Monopoly or cards or we play along with Who Wants to be a Millionaire. I watch the American wrestling with Anthony on TV (possibly the funniest, campest thing on TV).

Because of autism, we found our family.

We have less money than we used to. I can’t pursue the heady heights of my career. Most web developers of my age and experience are head of design studios or successful freelancers. I couldn’t possibly care less. We have enough money to keep a roof over our heads, food on the table, clothes on our backs, the odd DVD collection (Prison Break Season One currently) in the player and lots of time. Because I’m not scaling the corporate ladder, I don’t have to stay late at work. I can get home before the kids go to bed. I can help my wife tidy up. Money can’t buy me the time I get to sit besides the bath as my two girls splash around in it before bedtime. Whilst my friends organise their working lives via their mobile phones, my wife’s sending me stills and video’s of the funny/cute things my kids are up to on mine.

Autism has made me more patient, calmer, confident, determined and considerate. I think I’m a better person and a better husband and father since Megan was diagnosed. So, to echo John Cleese’s classic ‘All right, but apart from the sanitation, the medicine, education, wine, public order, irrigation, roads, a fresh water system, and public health, what have the Romans ever done for us?’ I’d ask ‘Alright, but apart from a great family life, strong bonds with my wife, being a better husband, having the time to be a good dad and generally enjoying life, what has autism ever done for us?’

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