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Autism – The Epidemic That Never Was

15 Aug

Autism Diva, reproduced from New Scientist

RICHARD Miles will never forget the winter of 1989. The 34-year-old company director and his family spent that Christmas on the island of Jersey in the English Channel, where he had grown up. It was also then that he first noticed something was badly wrong with his 14-month-old son Robert. The bright, sociable child, who had already started talking, became drowsy and unsteady on his feet. Then he started bumping into furniture. Within weeks his language had dried up and he would no longer make eye contact. “It was as if the lights went out,” says Miles. His son was eventually diagnosed with autism.

Miles, who now campaigns for more research into autism, is convinced that his son is part of an autism epidemic. Ten years ago, he points out, Jersey had just three autistic children in special-needs education. It now has 69. Robert was one of a cluster of nine children on the island diagnosed around the same time.

Similar rises have been reported across the world, from Australia to the US, and from Denmark to China. Back in the 1970s, specialists would typically see four or five cases of autism in a population of 10,000. Today they routinely find 40, 50 or even 60 cases. Perhaps the starkest illustration of autism’s relentless rise comes from California. In 2003, the state authorities stunned the world when they announced that over the previous 16 years, the number of people receiving health or education services for autism had risen more than sixfold. The world’s media went into overdrive.

What could be causing so many children to lose their footing on a normal developmental trajectory and crash-land into the nightmare world of autism? The change has occurred too suddenly to be genetic in origin, which points to some environmental factor. But what? There is no shortage of suspects. In the UK, blame is often laid at the door of the combined measles, mumps and rubella (MMR) vaccine. In the US, mercury added to a range of childhood shots has been accused. Food allergies, viral infections, antibiotics and other prescription drugs have all been fingered, often by campaign groups run by mystified and angry parents. The problem is that none of these suggested causes has any solid scientific evidence to support it (see “The usual suspects”).

Perhaps there’s a simple explanation for this: there is no autism epidemic. On the face of it that sounds ridiculous – just look at the figures. But talk to almost any autism researcher and they will point to other explanations for the rise in numbers. Some say it’s still an open question, but others are adamant that the autism epidemic is a complete myth. And if the most recent research is anything to go by, they could be right. Studies designed to track the supposedly increasing prevalence of autism are coming to the conclusion that, in actual fact, there is no increase at all. “There is no epidemic,” says Brent Taylor, professor of community child health at University College London.

Autism is a developmental disorder sometimes noticeable from a few months of age but not usually diagnosed until a child is 3 or 4 years old. It is characterised by communication problems, difficulty in socialising and a lack of imagination (see “What is autism”). It is not a single disorder, but comes in many forms, which merge into other disorders and eventually into “normality”. There is no biochemical or genetic test, so diagnosis has to be made by observing behaviour. Autistic children also often have other medical conditions, such as hyperactivity, Tourette’s syndrome, anxiety and depression. The upshot is that “one person’s autism is not another person’s autism,” says epidemiologist Jim Gurney of the University of Minnesota in Minneapolis.

In recognition of this ambiguity, autism is considered part of a continuum within a broader class of so-called “pervasive developmental disorders” (PDDs) – basically any serious abnormality in a child’s development. Autism itself is divided into three categories: autistic disorder, Asperger’s syndrome (sometimes called “high-functioning autism”), and pervasive developmental disorder-not otherwise specified (PDD-NOS), sometimes called mild or atypical autism. Together these three make up the autistic spectrum disorders.

“Californian authorities stunned the world when they announced a sixfold rise in autism over the past 16 years”
Confused? You’re not the only one. The difficulty of placing children with developmental problems on this spectrum has led to several major shifts in the way autism is diagnosed in the past 30 years. In the late 1970s, the autism label was kept for those with severe problems such as “gross language deficits” and “pervasive lack of responsiveness”. But since 1980 the diagnostic criteria have been revised five times, including the addition of PDD-NOS in 1987 and Asperger’s in 1994.

This massive broadening of the definition of autism, particularly at the milder end of the spectrum, is one of the main factors responsible for the rise in cases, says Eric Fombonne of McGill University in Montreal, Canada, a long-standing sceptic of the epidemic hypothesis. Tellingly, around three-quarters of all diagnoses of autism today are for Asperger’s and PDD-NOS, both of which are much less severe than the autism of old. “There is no litmus test for who is autistic and who is not,” says Tony Charman of the Institute of Child Health at University College London.

Changes in diagnostic criteria apart, there are other reasons to believe that autism is simply being diagnosed more often now than in the past. One is the “Rain Man effect” – the huge increase in the public awareness of autism following the 1988 film starring Dustin Hoffman. Awareness has also increased massively among healthcare workers. “Twenty years ago there were maybe 10 autism specialists in the country. Now there are over 2000,” says Taylor.

Another factor is that one of the stigmas of autism has largely disappeared. Until about 10 years ago a prominent idea was that autism was caused by an unloving “refrigerator mother”. Now it is a no-blame disease. “Parents are more willing to accept the label,” says Taylor. One expert New Scientist spoke to went as far as to describe autism as “trendy”.

Finally, while some parents still have to fight for help for their autistic children, far more services are now available. This has encouraged doctors to label borderline or ambiguous cases as autism – they know this is often the best way to get the child some help. It also makes autism an attractive diagnosis for parents. “I hear stories of parents who are anxious to get a particular diagnosis if that is what is required to obtain the services their child needs,” says Sydney Pettygrove, a paediatrician at the Arizona Health Sciences Center in Tucson. In the UK, says Simon Baron-Cohen of the Autism Research Centre at the University of Cambridge, “in every town there are trained clinicians who can make a diagnosis.”

It is hard to quantify these trends, but many epidemiologists now believe that they can account for the apparent rise in autism the general public and media take for granted. Proving it, however, is difficult – if not impossible. The main problem is that an epidemiological study carried out in the 1980s simply cannot be compared with one done last week. There will be so many differences in diagnostic procedures and in the willingness of doctors and parents to label a child autistic that comparisons are meaningless. “You can’t control for everything,” says Charman.

And so attention has shifted to what epidemiologists sniffily refer to as “service provider data”, such as the California figures. Ever since 1973, the authorities there have been keeping records of the number of people receiving some kind of state help in connection with autism. In 2003, California’s Department of Developmental Services (DDS) announced a chilling figure that captured the world’s attention. In the 16 years to 2002, cases rose from 2778 to 20,377 (see Graph). Among autism campaigners these figures are often cited as incontrovertible and final proof of the existence of the autism epidemic.

But there are serious problems with this interpretation. First, the figures are raw numbers from public services, not a proper epidemiological study. Critics point out they are not corrected for changes in diagnostic criteria or for the growing awareness of autism.

“Prisons and institutions could be full of autistic adults labouring under wrong diagnoses such as schizophrenia”
There is evidence, for example, that as the California autism numbers have risen, diagnoses of mental retardation have fallen. Researchers at Boston University School of Medicine in Massachusetts have found a similar pattern in the UK. This effect, dubbed “diagnostic substitution”, cannot explain all the increase but is one example of how diagnostic fashions can skew the data.

Another potential flaw is that the California figures don’t take into account the fact that the state’s population is growing rapidly. Between 1987 and 1999, the total population rose by nearly 20 per cent, and the age group 0 to 14 rose even more steeply, by 26 per cent.

As a result of these doubts and unknowns in the California figures, most epidemiologists refuse to draw firm conclusions from them. “The report doesn’t change anything,” says Charman. “It’s not a systematic study.” In fact, the preface of the most recent California report contains a health warning not to read too much into the numbers. “The information should not be used to draw scientifically valid conclusions,” it says.

Some researchers, notably Robert Byrd of the MIND Institute at the University of California, Davis, have attempted to correct for all the unknowns. In an analysis published on the state DDS website nearly three years ago, Byrd concluded that the rise is real. “Autism rates are increasing,” he told New Scientist. Some scientists accept that Byrd’s analysis lays to rest the idea that population growth could have significantly swelled the figures. But his methods for investigating the other potential sources of bias have been heavily criticised, and tellingly, Byrd has not yet succeeded in getting his study published in a peer-reviewed journal. Until he does, it is hard to know how much weight to give his conclusions.

Perhaps the strongest case against the “better diagnosis” theory is that, if true, there should be a “hidden hoard” of autistic adults who were never properly diagnosed in childhood. To parent Richard Miles, this is compelling. “My doctor cannot believe that he could have missed so many cases in the past,” he says. But Taylor disagrees. As a former general practitioner, he says there are many children today diagnosed with autism who would not have been labelled as such in the past.

This view is difficult to substantiate, but in 2001 a team led by Helen Heussler of Nottingham University, UK, had a crack. They re-examined the data from a 1970 survey of 13,135 British children. The original survey found just five autistic children, but using modern diagnostic criteria Heussler’s team found a hidden hoard of 56. That’s over a tenfold rise in numbers, which puts the California figures in perspective. Heussler and her colleagues concluded that “estimates from the early 1970s may have seriously underestimated the prevalence”.

Lorna Wing, a veteran autism researcher at the Institute of Psychiatry in London, agrees. In the 1970s she spent a lot of time working with special-needs children in the London district of Camberwell. Wing reckons that at the time, fewer than 10 per cent of autistic children were correctly diagnosed. She also thinks that prisons and institutions are full of autistic adults labouring under wrong diagnoses such as treatment-resistant schizophrenia or ADHD.

Ultimately, however, it may be impossible to tell whether there has been a genuine rise in the incidence of autism over the past 30 years. “There is no clear evidence that there has been an increase, but there’s no proof that there hasn’t,” says Charman. Even the arch-sceptic Fombonne accepts this. “We must entertain the possibility,” he says. “But we don’t have the evidence.”

But researchers can answer another question: is the incidence of autism continuing to rise? There is a tried and tested method of tackling this sort of question. You carry out a large prevalence study among a particular age group, and then repeat it a few years later with a new set of individuals, in the same place and using exactly the same methods. Several such studies into autism are ongoing, notably one funded by the US Centers for Disease Control and Prevention in Atlanta, which will look at changes in incidence across 11 states.

One team, however, is ahead of the game. Back in July 1998, Fombonne and Suniti Chakrabarti of the Child Development Centre in Stafford, UK [This is the Doc and the center that diagnosed Megan, trivia fans], started screening every child born in a four-year window (1992 to 1995) who lived in a defined area of Staffordshire, 15,500 children in total. As a result, they established baseline figures for autistic spectrum disorders – about 62 per 10,000. Then they did it again, in exactly the same place and exactly the same way, this time with all the children born between 1996 and 1998. In June this year, they reported that the prevalence of autism was unchanged (American Journal of Psychiatry, vol 162, page 1133). “This study suggests that epidemic concerns are unfounded,” concludes Fombonne.

Similar surveys need to be done in other parts of the world to rule out the possibility that there is something unusual about Staffordshire. And the Staffordshire result has failed to convince campaigners and parents, including Miles. But what is clear is that after the first direct test of whether autism is rising, it’s 1-0 to the sceptics.

That doesn’t mean we should stop searching for the causes of autism. The disorder itself is real, and if researchers knew what was behind it much suffering could be averted. But the Staffordshire surveys do suggest that there is no environmental problem that is triggering autism in ever-greater numbers and which must be identified as a matter of urgency. That will not be much comfort to families with autistic children. But it should make everyone else feel a bit more secure.

What is autism?

The developmental disorder that is now called autism was first described by doctors in 1943. Psychiatrists say there are three key features: lack of imagination, communication difficulties, and problems interacting with others. In practice, those affected have a bewildering range of strange behaviours. These can include fear of physical contact, hearing and visual problems, bizarre obsessions and a touching inability to lie.

Apart from the fact that about three-quarters of those affected are male, it is hard to make generalisations because the condition varies widely between patients. Contrary to popular belief, freakish talents for maths or music, say, are uncommon. In fact, about three-quarters of people with autism have learning difficulties, but those who do not may manage to hold down a job.

Parents usually realise something is wrong because children fail to develop normally. But up to one third of cases are “regressive” – children seem to go backwards when they are about two, losing their language and social skills.

In psychological terms, people with autism seem to lack “theory of mind” – the recognition that other individuals may hold a different perspective on things than themselves. This leaves them in a bewildering world where people seem to act according to incomprehensible rules and behave in meaningless ways. They also have impaired “executive function”, the ability to plan future actions. And patients have weak “central coherence”, the ability to extract meaning from experiences without getting bogged down in details. In other words, they can’t see the wood for the trees.

Clare Wilson

The usual suspects

Both genes and environmental factors play a role in the development of autism. But if there has indeed been a sudden rise in cases, the only possible cause is an environmental change because our genes can’t be altering that fast. Numerous candidates have been proposed.

“LEAKY GUT”

Thanks partly to anecdotal reports linking autism with bowel problems, some researchers believe that the condition could be caused by various dietary components leaking through the gut wall into the bloodstream, allowing them to reach the brain. One possible cause could be increased use of antibiotics disturbing the natural balance of gut bacteria.

There have been some reports of people with autism doing better on diets that exclude dairy foods and gluten, a protein found in wheat and barley. And a few small studies have found that some patients seem to improve after injections of the gut hormone secretin, which could possibly be related. But neither of these approaches have been borne out by larger placebo-controlled trials.

MMR JAB

The combined measles, mumps and rubella (MMR) vaccine was fingered by gastroenterologist Andrew Wakefield, formerly of the Royal Free Hospital in London. He suggested that giving children three vaccines simultaneously could damage their gut. Along with vociferous campaigning by parents, this led to a fall in uptake in the UK of this important childhood vaccine.

However, numerous large-scale studies showed no link between receiving the vaccine and developing autism. A recent study from Japan may prove the final nail in the coffin for the MMR theory. It found that diagnosed cases in that country continued to rise even after the triple jab was withdrawn (Journal of Child Psychology and Psychiatry, vol 46, p 572).

MERCURY IN VACCINES

In the US, mercury is public enemy number one. The mercury-containing preservative thimerosal – which has been used in a range of childhood vaccines although it is now being phased out – is claimed to cause autism by damaging the developing brain directly. But a review last year by the US Institutes of Medicine rejected a causal link between autism and either mercury or the MMR jab.

Jabs, JABS And Research

11 Aug

A recent study says:

Receiving multiple vaccinations does not increase a child’s risk of being hospitalized due to infectious diseases, a study has concluded.

In fact it goes on to say:

Writing in JAMA, the team led by Anders Hviid said they found 15 associations where vaccination appeared to protect against conditions other than those it was targeted at.

Which is a good thing. Vaccine’s are not only meeting but _exceeding_ their job description. At the end of the BBC piece though is a quote from Jackie Fletcher:

I believe there is a susceptible group of children who have vulnerable immune systems, and could be identified before vaccinations were given.

Jackie Fletcher is from the anti-vaccination group JABS who campaign principally against the MMR jab and supports Wakefield’s flawed study into the links between MMR and autism (Interestingly, Fletcher says that ‘Doctor Wakefield has _described a *new condition* called autistic enterocolitis_ which in essence is late onset autism with bowel problems’).

JABS says on their ‘about us‘ page:

JABS as a self-help group neither recommends nor advises against vaccinations but we aim to promote understanding about immunisations and offer basic support to any parent whose child has a health problem after vaccination.

Neither recommends nor advises…hmmmm…..JABS then offers a list of questions to ask yourself before vaccination. The very first one is:

Does my child really need this vaccination?

Some of the following questions have merit (‘is my child well enough to have this vaccine’?) but lets not pretend here. The tone is set with that first question. And what a question. It speaks to the insular over-protective mother-hen in all of us ‘Jabs hurt my baby, do I _need_ to hurt my baby?’

The answer is, of course, ‘Yes!’ and not only for my children but _all_ children. As parents shy away from vaccines stories are once again appearing about child hospitalisation and death as a direct result of lack of vaccination.

And yet so many studies absolve vaccines of blame in autism or disease. Does this stop the anti-vax people? Hell no! They want more research and they want it to keep coming until something is found or the money runs out.

Which brings us neatly to this:

UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

Possible interventions: *8%*. Eight percent. *Eight*. And yet:

When asked, 75% of families wanted more attention paid to environmental factors, while 62% of scientists gave preference to genetic research.

So these two groups of people fall into the above 22% dedicated to ’cause’.

Amazing isn’t it? JABS, Generation Rescue and their ilk continue to pursue highly political campaigns to go after vaccines and 8% are left with enough time and funding to research interventions _that will help_ .

Maybe its just me but our priorities seem to be totally out of whack. As my tiara bedecked friend the AutismDiva says:

What the parents should be worrying about is their children’s futures. If the mercury moms put all that money and energy into building programs that would provide jobs and housing and care for their kids, some of whom will be able to do fine without any help, and some of whom will need very special help, not only would the autistic adults alive now benefit but the programs would be established by the time the kids got to be adults, the wrinkles could get ironed out.

But thats just good common sense. Nothing for RFK Jr or David Kirby to gnash their teeth, knot their brow and cry crocodile tears over in that statement.

Yay for the eight percent.

Tom Cruise Reminds Me Of Anti Thimerosal Brigade

6 Jul

Tom Cruise recently went on the Today Show (a US politics/lifestyle type show) to big up The War Of The Worlds. He and the host ended up discussing Tom’s bizarre atitude to Psychiatry (which he claims is a psuedoscience) and Scientology (which is obviously a much more rational thing to believe in!). Apparently Tom ‘lost the plot’ a bit and started raving.

I read a transcript of the interview (which I’ll link to in a minute) and its true. He’s almost frothing at the mouth. But what struck me the most was the eerie similarity in attitude between Cruise and the ant-vax/thimerosal crowd. All those people like Lujene Clarke, David Kirby, SafeMinds et al share the same beliefs as Cruise really: all science is a sham and they are the sole holders of (fanfare please) The Real Truth. They ignore reason, they ignore science, they alter and cherry-pick quotes to suit their agenda and they claim that they and only they are ‘well informed’ on the issue.

Its a dangerous arrogance that, just like Cruise, is short (sorry) on logic and big on bullshit and self-serving prophecy. Go have a read of the Cruise transcript and you’ll see what I mean immediately.

The Autistics Are Coming!! Oh Dear God!!!

3 Jul

If you search for anything related to autism you always come across parent/family led groups who describe autism in increasingly demonic terms. It used to be that someone was simply autistic but nowadays we have the ‘hell’ of autism or the ‘abyss’ of autism being used to attach negative emotion to autism.

Nowhere is this more apparent than when social commenters talk about the autism epidemic. This ‘epidemic’ revolves around the idea that 1 in 166 kids in America are autistic and of course, epidemic is just another emotive word tool designed to elicit the maximum amount of scare-mongering from people.

Every so often the ‘ante’ is upped and another emotive word tool is used that is more fear-mongering than before. One such idiotic phrase coined after 26th Dec 2004 was ‘autism tsunami’. In a breath taking lack of respect for the 200,000 dead and an even more breath taking lack of respect for autistics themselves, autism was portrayed as a phenomenom equal to that which killed nearly a quarter of a million people. I wonder how the families of those who lost loved ones on Boxing Day felt about that comparison?

Very recently that ante has been upped again. From terrible yet local natural disasters to pure human evil. In a mind bogglingly tasteless recent Schafer Autism Report, the man himself said that:

Autism holocaust deniers lack the science.

This was made in reference to the Danish study that debunked the link between Thimerosal and autism. I haven’t read the article itself but this incredible reference left me open mouthed. Apparently we who follow the science on this issue are akin to holocaust deniers. Thats right – we’re apparently the same as some snivelling little shit with a skinhead, Docs and a swastika tattoed on their imbecilic skulls. Wow, thanks Lenny. I can see how you could easily draw a comparion between those who don’t believe you’re right about the thimerosal/autism link and the Nazi genocide of over 6 million people. Jesus fucking Christ man – get a sense of perspective. How utterly disrespectful to the memories of those who died in the Second World War than to have some jumped up little man sully the concept of free speech with appalling comparisons to those people who veterans all over the free world died to save us all from.

But then we’re dealing with the same loose affiliation of people who label autistic people as mad or fakers or who think their best chance for a cure lies with a quack with some sun cream that cures autism, old age and cancer.

Oh and the autism epidemic? I think you might want to have a read of this.

I Am A Child Abuser

22 Jun

Some of the comments coming from Generation Rescue’s ‘Rescue Angels’ are getting scarier and scarier. This was posted to a Parents.com thread:

The problem is that doctors keep telling people that autism is not caused by mercury to cover their asses. They screwed up by giving our kids way too much mercury. Those of us who know this don’t like seeing unknowing parents allowing their kids to rot in the abyss of autism. Wake up and smell the coffee is approprite. Anyone who is not chelating to get rid of the mercury is guilty of child abuse. Every doctor who is not telling their patients to chelate is guilty of malpractice. There was no autism until Eli Lilly started putting mercury in vaccines. Aside from fragile X which some say is not really autism, it is all caused by mercury. Any parent who listens to the doctors tell them that there is no known cause or cure for autism is too damn stupid to have kids.

Parents.com

Now aside from the factual errors, isn’t that the most frighteningly, almost fascist, shivers-down-your-spine-hair-stand-on-end-uh-oh-here-come-the-fundie-whacko’s genuinely disturbing thing you’ve read in awhile?

This is a self-styled ‘Rescue Angel’ of Generation Rescue.

Autistic Pride Day: Us

19 Jun

So what did we do for Autistic Pride Day?

Well, basically we did all the things that Meggy loves to do. First of all we went down to Sainsburys so Meggy could have a bloody good sing in a really echoey environment (song of choice: 1, 2, 3, 4, 5, once I caught a fish alive…)

When we got back we indulged her passion for DVD’s and basically gave her the remote and let her pick and choose whatever she wanted (age appropriate of course!).

Next up we went into the garden where Anthony (my NT 12yo son) and Meg indulged in Megan’s biggest love – water play. Megan would _live_ in water if we’d let her and its our ambition if we ever win the lottery to get a house with a wet room. She splashes so much in our current bathroom that it comes through the Kitchen ceiling so a wet room would be ideal. But for now this is the next best thing – outside in the garden with the tap on and a good natured brother to soak as occasion demands.

We had a great day all round, if you were marking the day, we all hope you did too. And next time someone starts banging on about the ‘hell’ of autism or how autism is ‘the enemy’ show them this post. We had a great day immersing ourselves in Megan’s world but most importantly, Megan did too.

Letter To JB Handley, Founder Of Generation Rescue

18 Jun

Dear Mr Handley,

I’m writing this letter to you to ask you to make textual revisions to the ‘generationrescue.com’ website. As it stands, your website is responsible for perpetuating untruths about the nature and causes of autism that can only serve to promulgate negative stigma and reduce funding into valid interventions.

On the website you state:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.

and

There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning.

These two statements (one an expression of opinion and one an expression of your opinion disguised as a statement of fact) are untrue and misleading. Whilst it may be true that there is no *proof* that autism is genetic, there is plenty of very good, valid *evidence* to indicate that there is at least in part a genetic component to autism. To baldly state ‘autism is mercury poisoning’ is facile. In fact, there is no proof that could lead you to make such a claim although, like with genetics, there may be some evidence.

I don’t have an issue with you claiming that autism _may in some cases_ be resultant from an environmental insult such as Mercury. It is your unfounded and belligerent claim of fact that bothers me so much.

Your organisation advocates the use of Chelation Therapy. In fact, I’m given to understand that you use it own your own son. If your son is Mercury poisoned then from what I understand of Chelation Therapy, it may work. Equally it may not. If it works for you then more power to you. No one wants to see children suffering. However, I’m of the opinion that informing parents that *all* autism is mercury poisoning and that Chelation is the answer is grossly over simplifying the case and tantamount to a willful misleading of people trying to do their honest best. And costing them thousands of dollars as a result.

Chelation therapy also has a dark side. One that has resulted in injury and death. Your blasé support of it as a therapy is worrying in respect of parents who may find only after the fact that they preferred an autistic child to a dead or seriously injured child. Your failure to advise on the potential dangers associated with such an untested and unknown procedure is also very worrying. What are the long term effects of Chelation Therapy for autistics? Where are the long term studies?

But by far my biggest worry in regards to your simplistic stance on ‘autism is mercury and nothing else’ is this: Every time that lie is perpetuated, every time its circulated and every time its repeated a little less attention and importance is attached to finding and researching valid interventions that can greatly benefit our autistic kids. Not only that, but you debase and devalue a whole section of society by effectively labeling them as ill when they are not. This is unacceptable to me.

As the parent of an autistic I face an uphill battle getting services that my child deserves. When you move your campaign to the UK (as I’ve no doubt you will) your dogmatic claim stands a good chance of even more seriously impeding my daughters ability to access services she needs. What could possibly be your reason for insisting to the detriment of autistics everywhere that autism is mercury poisoning and only mercury poisoning? Why do you desire to make the lives of parents like me even harder? Why do you desire to increase the stigma of autism?

I ask you from the bottom of my heart Mr Handley, as one Dad of an autistic child to another on Autistic Pride Day and on the eve of Fathers Day here in the UK – please, try and see your way clear to undoing the damage you are doing. I’m not asking you to disband your organisation or discard your beliefs. Instead I’m asking you to moderate your tone and please try to be respectful of autistics and parents of autistics who know beyond doubt that autism is *not* only mercury poisoning.

My best to your family.

Kevin Leitch

Autistic Pride Day: Jane Meyerding/Helen Ford

15 Jun

Another dual set of contributions here.

Helen is a friend I’ve known for a year or so and is a student currently enrolled at University. Jane I’ve only recently ‘met’ (in the online sense) but her fascinating website kept me reading for quite awhile!

— Helen Begins —

For me Autistic Pride Day is a chance to show the world, and that being autistic is not completely negative. It is to show the world that Autistics the world over do have a voice and are not afraid to use it. That we can help show parents that Autism is not a complete negative; that sometimes we can be amongst the best, and that there is hope for their children.

— Helen Ends —

— Jane Begins —

Autistic Pride is a concept I have to struggle with a bit. Not because of the autism part, but because of the pride part. For me, the only kind of pride that makes sense is pride in accomplishment.

I live in a part of the world where some people say (or put up signs saying) “I’m proud to be an American.” Occasionally those signs/sayings belong to people who became “American” (resident or citizen of the United States of North America) through their own efforts, but usually the phrase is uttered by people who were born into their U.S. citizenship. How can a person be proud of something so automatic and, indeed, inevitable? Perhaps they mean “I am proud of my country.” But if that’s what they mean, why isn’t that what they say? (And what exactly would it mean to say that?)

Similarly, I was born autistic. So how can I be “proud” of it? The only answer that works for me is: We can be proud that we have overcome the shame we were forced to feel for being our “weird” autistic selves. We can be proud to have gained an understanding of our autistic selves, despite the constant social pressure to “fix” ourselves or at least behave like non-autistics. We can be proud of reaching out to other autistics in order to learn from them, share our knowledge, and support each other.

Most of all, we can be proud to be autistics who are advocating for greater understanding and acceptance of autistics, for an end to separating us into categories (such as “high-functioning” and “low-functioning”) that contradict the realities of our lives, and for the kinds of accommodations and supports that will enable more of us to lead richer, more independent lives.

Autistic Pride Day thus is a day on which we re-dedicate ourselves to self-acceptance, mutual support, and advocacy. That’s what we have to be proud about.

— Jane Ends —

Autistic Pride Day: Larry Arnold/Dragon

14 Jun

As part of a continuing mini-series leading up to Autistic Pride day on the 18th June, I’d like to present two contrasting pieces. One from a perspective of youth, idealism and hope and the other from experience and wisdom.

Larry Arnold was one of the first autistic ‘voices’ I heard and his unique style and intelligence made me want to read as much as possible about autism as I could.

Dragon, whos screen-name I use rather than his real name due to his age, is a 12 year old British autistic. I’ll quote him first:

— Dragon Begins —

I think autistic pride day is a good time to express how you really feel about being autistic, its a chance to express our pride about it. In the past I felt like my autism was a disability, now I know its just a difference, and its something to be proud of. In the future I hope that the world will be a better place for autistics to live in. People should respect that were aren’t people with a disease.

— Dragon Ends —

And now Larry:

— Larry Arnold Begins —

I am not altogether sure what to make of the notion of autistic pride day, as in general I have spoken out against specific awareness weeks, as promoting the notion that all you need do is concern yourself about some specific issue at a specific time of year and then let it lie.

The same goes for notions of autistic pride, if I were only proud for one day, what would that achieve? Except when the worries of the world crowd me in and I am feeling a sense of despair, I am proud of what I am, autism being part of that. My own position on the autistic spectrum is not something I usually shy away from and try to hide. I am autistic and I do not care who knows it. At this stage in my career it would be pretty hard to hide it from any prospective employer or public authority as it is out there on the web and on video in all its glory. In a way I have no choice but to be proud.

I do not really know if one day “hits” will achieve anything outside of the autistic community as it currently exists, as I think we are still at the beginnings of forging any kind of credible movement, and facing a lot of obstacles from big money at the moment.

How can we make a bigger splash than the dollars and slick publicity put about by those who would like nothing better than to eliminate us from the planet, and probably expunge us from history too?

I think that can only come from being out and open about being autistic, and not trying to fit in all the time or making ridiculos compromises that smother our autism.

I can’t help being critical of some of the “big names” in Autism for leaning too close to those who would deny our existance by appearing at their events, but again I sometimes fear I am becoming too compromised myself.

I don’t think there is any badge of autism or colour of autism (except for the rainbow) I show my individuality and pride by not becoming part of the crowd, perhaps I am a Groucho Marxist, not wanting to belong to any club that would have me as a member, or wanting to march gloriosly out of step with everyone aware that marching together out of step is a paradox and the biggest paradox for me is wanting a world where it does not matter if I am autistic or not, just that I am and entitled to be in the world.

For those who have the opportunity to do something communal, and wave an autistic flag together, go for it, you don’t need old sixties and seventies relics like me making up your minds for you.

— Larry Arnold Ends —

Thanks to both. Hope and wisdom on one page – bookmark this one people as its an accomplishment I won’t be able to match on my own ;o)

Autistic Pride Day: Camille Clark

13 Jun

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

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

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

Well, actually, no.

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

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

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

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

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

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

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

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