Archive | April, 2006

‘Acceptance Therapy’ In Action

27 Apr

I was sent a newly published paper today and for one it was a total joy to read from start to finish.

Usually I have to wade through mercury, MMR, epidemics etc. Today there was none of that. The paper is entitled:

A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome

An intriguing title and one that I admit I first thought was going to be heavy on religion and low on science. I was wrong.

The results of this paper were:

Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world
views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.

How absolutely refreshing not have to wade through the _Strum und Drang_ of ‘the hell/abyss/nightmare’ of autism and how all its ‘victims’ are destined for a life of institutionalisation, abuse and neglect.

Over time, parents may experience changes in ways of seeing their child, themselves and the world. These new perspectives may encompass profound rewards, enrichments, and the appreciation of the positive contributions made by people with disabilities

and

A wide range of positive changes or transformational outcomes have been reported by parents of children with disabilities, including: the development of personal qualities such as patience, love, compassion and tolerance (Summers et al 1989; Behr & Murphy 1993; Scorgie & Sobsey 2000; Kausar et al. 2003); improved relationships with family members and others (Stainton & Besser 1998; Scorgie & Sobsey 2000; Kausar et al 2003); stronger spiritual or religious beliefs (Yatchmenoffet al. 1998; Scorgie & Sobsey 2000; Poston & Turnbull 2004); an ability to focus on the present (Featherstone 1980); and a greater appreciation of the small and simple things in life (Abbott & Meredith 1986; Kausaret al. 2003). Studies therefore indicate that, with time and experience, parents of children with disabilities may come to regain a sense of control over their circumstances and a sense of meaning in life by seeing the positive contributions of their children with respect to personal growth and learning whatis important.

There is so much truth to this. My marriage and relationships with my kids has grown stronger and stronger. We have learned how to work for and support each other in so many ways and we place precious value on the here and now. We don’t get the twice yearly holidays, constant cinema trips etc that a lot of my peers enjoy but what we do is spend lots and lots of time with each other. This would never have happened if our daughter wasn’t autistic.

Initial reactions to parenting a child with a disability

I remember when I first got the diagnosis, my preoccupation – to be perfectly honest with you – was about me. It wasn’t about my son. It was about what I was feeling. And I was feeling powerfully upset about this diagnosis because . . . it just completely turns your life upside down. I had plans. I wanted my children to be happy but I wanted them to be accomplished. . . . So both of us – my husband and I – had this vision of our children as being academically keen. . . . So to be confronted with the possibility that my son would not even have imagination, I just didn’t know what to do. I was devastated. and I couldn’t fix it.

Again, this is a very accurate reflection of how I felt at the time. One turns inward and searches for reasons, for blame and for a way to _fix_ things. I have to smile as I look back at those days now but they were pretty awful. Particularly for our daughter who we subjected to _our_ guilt.

Family Strengths

This is a quote from a service provider:

I find that the majority of families that I know who have kids with special needs are some of the strongest families that I’ve ever encountered. . . . I remember someone making a comment once about ‘You must see a lot of dysfunctional families.’ I said ‘It’s the exact opposite, they are some of the healthiest and strongest families that I’ve known.’

And I think that _can_ be true as well. Not always. I’m aware of a lot of families who have not managed to move past the ‘me’ stage and I hear about divorces and arguments and screaming matches and custody battles.

Neurodiversity, Acceptance and Cure

No, the word ‘neurodiversity’ is never used in this paper but it may as well be – its _exactly_ what some of these parents are talking about.

Our children have taught us the true worth of an individual. Our society tends to value persons based on performance, knowledge, education, the ability to earn income. And these children have taught us that there are so many more inherently important values, which have shaped us as a family.

One of the most powerful quotes from a parent was this one:

Another thing that makes me feel that I am so much smarter than I used to be is that I have given up trying to fix my son. . . . All I have to do is figure out . . . what he wants and what will make him happy, and try to put a structure around it. . . . He’s fine the way he is, and it was for me to figure that out and, gee, the poor guy while I was figuring that out.

Fine the way he is. Are there people out there who can _hear that_ ?

And it’s true that if you don’t change the way you think about this child, if you always think that you wanted to have a normal child and you are always comparing your child to a normal child, you’ll never really be accepting and you just don’t get anywhere.

It really is as if these researchers had interviewed me for this study (obviously they hadn’t – its Canadian) as these are thoughts and opinions that I share. It says to me that far from being an isolated phenomenon, the ideas that underpin what I think of as neurodiversity are much more pervasive and widespread than a lot of people imagine.

I’ll close by saying how much I enjoyed reading this paper. It moved me to tears and it made me grin from ear to ear. The authors conclude:

The findings may provide families with a sense of realistic hope for the future, and may validate their perspectives by showing that they are not alone in their experiences and challenges. It may be beneficial for families to know that family life changes, and that other parents report changes in ways of thinking about their child and their parenting role that provide a sense of control and meaning in life. Parents may find it useful to know that it is common to feel a lack of control, and disappointment and sadness due to lost dreams. Over time, many families gain new dreams, develop new understandings of their child and of the world, manage life effectively by adjusting their priorities, and report life-changing benefits for themselves, other family members, and members of the broader community.

Hasten the day :o)

Of Rashid Buttar and Stephen Hawking

23 Apr

I was recently sent the following link (thank you JNB ;o) ) which announces the creation of the ‘Cutler Hawking Project’. At first I suspected the formation of some soft rock combo but a quick glance at the site in question soon alleviated my doubts.

The majority of people need very strong evidence before they start believing in non-mainstream treatments, and this is the reason why we decided to contact Stephen Hawking to convince him to try Andy Cutler’s chelation protocol – so he can serve as an example. Confining him to a wheelchair since his mid 20’s, Mr. Hawking is a brilliant and famous English physicist who is suffering tragically from Amyotrophic Lateral Sclerosis, a disease caused by chronic mercury poisoning. Now 63, he can only speak with the help of a computer voice synthesizer.

Oh, it gets better.

The reason why we selected Mr. Hawking is because of his very unique situation. If we convince a man of his mega-stature in the scientific community to try Andy Cutler’s protocol and he subsequently recovers from such debility, that would convince even the biggest of skeptics. Because Mr. Hawking has been confined to a wheelchair for such a long time, and since he is so famous, no doctor could come up with another reasonable excuse for his recovery, and no doctor could write it off as a faked illness, as it would be too obvious that the mercury amalgam & vaccine issue is real and that Andy Cutler’s mercury chelation protocol really works. Mr. Hawking would be living proof! There is no other person in the world that could make a stronger case! It makes a dynamic difference when you see a celebrity talk about a certain treatment, and see that person get out of the wheelchair after 35 years and walk again, and we believe that news channels would report on this “miracle” worldwide!

OK, so here’s a group of people who believe first and foremost that a whole range of things are caused by mercury poisoning – autism, bad backs, and apparently Motor Neurone Disease has now joined that elite group. Lucky lucky Professor Hawking. Why lucky? Because chelation will cure him!!! Yay!!!!!

Except…neither Amyotrophic Lateral Sclerosis, nor indeed any other forum of neurone disease is caused by mercury poisoning. The official line is:

The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others…in searching for the cause of ALS, researchers have also studied environmental factors such as exposure to toxic or infectious agents. Other research has examined the possible role of dietary deficiency or trauma. However, as of yet, there is insufficient evidence to implicate these factors as causes of ALS…Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS.

Sounds strangely familiar doesn’t it?

And so we’re presented with the mental picture of some fairly odd people attempting to bother a sick old man just so they can try and persuade him to undergo some therapy. Nice.

And yet, it’s still not as bad as another treatment I heard about. Apparently Dr Rashid Buttar, adored by mercury boys and girls all over the world, the man who can cure cancer and reverse old age as well as cure autism with skin cream recommends another intriguing treatment for young kids – and this time, he’s not confining it to autistic kids: oh no, this ones good for _everyone_ :

Have any of your tried, or even heard anything about, doing urine shots to help the immune system? I don’t know much about it yet, but I know you use your child’s own urine, and filter it with special filters, before injecting it into their hip. I’ve heard really good things about it from a friend who tried it.

No, its not a joke. The answers came thick and fast:

I only know this was described to me to be a procedure used by Dr. Buttar about a year ago when my son was his patient, but the nurse said it would require an extended stay near the clinic and we live in Texas. We never tried it and moved on to another doctor.

Leslie, Chelatingkids2.

I’ll bet you did Leslie.

This was recommended by Dr. Buttar’s office for my NT son who has tons of allergies. I believe Dr. Imam in NY does it. It sounded too “out there” for us so we are currently sticking with justchelation for him.

Sangeeta, Chelatingkids2

Yeah, just chelation. That’s not ‘out there’ at all.

My grandson went through this beginning in October. It was a once a week treatment for 10 weeks. Before he began, he had lots of allergy problems that would often advance into sinus infection and ear infections. It’s almost April and he has not had one problem since. The only thing that I see is an occasional stuffy nose that lasts only a very short time.

andreagrammy.

Just in case you think you read it wrong, you didn’t. Rashid Buttar and others recommend taking some of the childs urine, filtering it and then injecting it back into them. This is apparently good for the immune system. Yummy.

Using A Website

20 Apr

As you may know I occasionally write posts that touch on web design/development. Even more infrequently I sometimes write posts that touch on autism _and_ web design/dev issues. This will be one.

One of the core skills any halfway decent web designer/developer should have is that of making a site accessible. A lot of sites are not accessible. What ‘accessible’ means is ways a designer can code a solution to ensuring that their end product (usually a web page) can be read by as wide a range of visitors as possible, regardless of disability.

A small easy to understand example: blind users may use a device called a Screen reader which basically sits between the browser and the user and does exactly what it says – reads the screen. Most software of this type is far from perfect and much room could be given to making this type of software operate in a more standardised way.

However, as designers/developers we have a responsibility too. We need to use the appropriate markup and to not put extra barriers in place. A small example of a barrier: many of my autism blogger colleagues use Blogspot.com to host their blogs. Its easy to use and free. Good deal. However, they also use comment authorisation routines that include those little graphics of random letters and numbers that a commenter must fill in (official name CAPTCHA). These tests are totally inaccessible. As they are randomly generated and rendered as images, screen readers cannot read the text embedded in the image and thus anyone who utilises a screen reader cannot post on a blog that has a CAPTCHA solution implemented. Google (who own Blogspot.com) are experimenting with audio based CAPTCHA’s to get around this issue.

There are hardware and code-able solutions for users with a variety of physical and cognitive disabilities but its strikes me that autism is…_other_…its not defaultly a cognitive disability and its not defaultly a sensory disability. In fact, its not truly a disability in the strictest sense of the word at all. However, it further strikes me that there are almost certainly a whole host of design/interface issues that face a person who is autistic when they try to use websites. I cannot guess what those may be although I would tentatively surmise that maybe the branding aspects of a design do not have the same level of emotional impact that they would on a non-autistic person.

So what I want to do is throw open the comments to as many autistic people as possible so I can get a sense of what issues (if any) you may face when browsing a website, what works for you, what doesn’t work for you. What are examples of good sites and bad sites. Do you like short pages, long pages, don’t care? What colours are good, or bad? Are icons more intuitive or plain text links? Lots of imagery a good thing or a bad thing? Do websites ever get so ‘busy’ that they lead to a point of overload? If so, why? What _design_ aspects may lead you to purchase via a website – or put you off purchasing via a website?

Let me have it :o) Feel free to crit this site if you feel moved to. Feel free to comment anonymously if you’d rather.

Conflicted

19 Apr

Four days ago, a mother and her autistic son died after jumping into the River Ouse.

One dark figure is seen leaping from the walkway into the River Ouse, near Hull, followed eight seconds later by the second person. Ryan’s (12) body was recovered from the river on Sunday. Alison (40), who was suffering from depression and worried that her son was being bullied, is still missing and presumed dead.

Mirror

I’m very conflicted about this story. About what this mother did.

On one hand we cannot pretend that what she did to her son was anything other than murder. It wasn’t an accident. She left a note saying she intended harm to herself and her son. A lot of the news stories that have surfaced after this event are written from an angle very sympathetic to the mother. They are accompanied by feature pieces detailing the ‘horror’ of autism and the ‘hopelessness’. One could almost come away from reading these stories believing this was a mercy killing.

It wasn’t. It was murder. If Ryan had not been autistic then the stories would have been a lot less sympathetic.

On the other hand, its quite clear that this mother was clinically depressed. She was alone seemingly without support. Depression is an awful, crippling mental illness and lots of people succumb to suicide whilst in its grip.

In this case we have to ask – where was the support for this family? Where we social services? Where were the LEA? Where was _society_ ? I don’t believe that depression is something that someone can hide or mask so well as to disguise suicidal or homicidal feelings. Why did no one alert social services?

This is all of our fault. Society has an obligation to support its members. We failed this ill mother and we definitely failed her murdered son.

Part of the reason is the utter ignorance that surrounds autism. I know I was totally ignorant about autism at one time. I felt like I had failed my child. I felt like it was the end of my world. I felt like the future for her was empty.

But I’m not clinically depressed. As a family we were able to (thankfully) move past these feelings and move into a place where we could move forward with acceptance and start to benefit our child. If someone is clinically depressed its understandable how one could never get past that stage if they have no help.

So what do we do? We need to start challenging negativity about autism. We have to start talking about its positivity as well as its sometime negativity. We have to start listening to people who know what they are talking about. We have to start supporting parents better with accurate information rather than informing them that their child’s future is a silent shell like existence followed by institutionalisation as soon as they become adults.

Please listen to autistic people talk about autism. Please discuss all options with new parents. Please point them to good resources. Please stop instilling despair in them.

Autism Becomes A Political/Legal Football

17 Apr

In the most recent edition of the Schafer Mercury Report, editor Lenny Schafer has a fascinating response to a letter writer. Its not really necessary to reproduce the letter, but Schafer’s response is a gem:

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. Since public health by definition is political, legal standards are even more so appropriate. The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless. The defenders of mercurated vaccines are in trouble and attempt to hide their malfeasance behind lab standards.

I mean _wow!_

This is a de facto admission that the scientific evidence to support an autism/mercury connection is very weak:

…. where standards of evidence are different than that of the narrow focus of scientific findings.

By ‘different’ Schafer really means ‘lesser’. I mean call me naive here but I was under the impression that the debate with the mercury militia on one side and the AAP, CDC, UK Gvmt, NHS, and ourselves – autistic advocates – were having was a _scientific_ debate. How silly was I? According to Schafer:

Since public health by definition is political, legal standards are even more so appropriate

Public health is by definition political? Really? Only if you can only see one thing at a time maybe. Widen the lens a little bit and I think every medical research scientist, patient and doctor/nurse might see public health as something a little bit more than a simply political process.

This is a debate at its core about what it means to be autistic. What causes people to be autistic. How in God’s name can that be political beyond the kind of infantile number crunching the Generation ‘6000% increase’ Rescue go in for? The people who have politicised this debate are the ones who employ media manipulation specialists such as Fenton Communications.

But hey – lets not worry about that – lets not worry about the *fact* that learning more about autism is a core scientific responsibility. Turning it into a manipulated football to kick about at the whim of a lawyer is much more realistic.

Schafer is absolutely right that scientific standards are greater than legal ones. Stronger, more stringent, demanding of _actual_ evidence. Maybe Schafer could remind me: was it science or a jury that discovered electricity? Was it science or a jury that discovered penicillin? Science or a jury that took men to the moon? Science or a jury that discovered our place in the stars? Our place in nature? Our place in the future?

But then again:

…if you can convince a jury, you can convince the public…

Because y’know, science is _hard_ . Stick instead to trial lawyers so we can let the sort of people who got OJ Simpson cleared, or the Birmingham Six banged up to sort out the tricky concept of autism. Great idea.

_”The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless.”_

Yeah, its all a big conspiracy. Like the one that saw SafeMinds purchase the domain evidenceofharm.com or the one that saw Wendy Fournier of the NAA build Kirby a website, like the one that had Richard Deth listed as an expert witness without his knowledge, or the one that tried to smear Paul Shattuck, or the one that had the Chair of the NAA working for thiomersal lawyers Waters and Kraus, or the one that saw Andrew Wakefield allegedly filing a patent for a rival vaccine to MMR *before* he published his paper, or the one that had Kirby add on two years to his statement regarding when the thiomersal connection would be in trouble, or the one that saw RFK Jr talking about the results of a study from the Geiers several months before it was published, or the one where the Geiers started patenting Lupron therapy, or the one where Generation Rescue placed words in the mouths of scientists.

Its true that your scientific case is very weak Mr Schafer. Without that science, so is your legal one.

The John Best Junior Thread

13 Apr

For some time now, John (aka ForeSam to the uninitiated) has been crying that he’s been banned from this blog and been using that ban as an excuse. I’ve decided to call his bluff.

For this thread, and this thread only, John will be free to argue, debate, insult, rage, pontificate and generally be the John Best we know and love.

In this thread will be discussing the following:

1) John’s belief that Eli Lilly invented autism in 1931. John says autism did not exist before Jan 1st 1931.
2) John’s belief that all autism is mercury poisoning from thiomersal in vaccines.
3) John’s belief that there was no autism in China prior to 1999. John says autism did not exist in China until Jan 1st 1999.
4) John’s role as speaker at mercury militia marches and his position with Generation Rescue
5) John’s opinion on homosexuality, which he believes is ‘a perversion’, and his subsequent opinion of David Kirby.
6) John’s belief that as an adult male, fist fighting with his eight year old autistic son is a sign of good parenting.
7) John’s belief that there has been an epidemic of autism.
8) John’s belief that because Dan Olmsted didn’t find any autistic Amish, this proves thiomersal causes autism.
9) John’s belief that it is acceptable to state that women he disagree’s with should be ‘horsewhipped’
10) John’s belief that phoning people he disagree’s with at their homes to abuse with them is acceptable.
11) John’s belief that the word ‘muslim’ is interchangable with the word ‘terrorist’.

Go for it. Either now, or wait for the man himself to defend himself. Just remember that John is typical member of the thiomersal/autim connection. I of course am open to correction on that from other believers of the thiomersal/autism connection along with an explanation of why.

Also remember John is a fully ‘paid up’ Generation Rescue Rescue Angel and his views on _all_ the above should be taken as representative of that organisation, unless of course, anyone from that org would like to deny John’s involvement with them on record.

CDDS Data, Flu Vaccines And Likely Predictions

12 Apr

So, now that the cases of autism are _still_ not falling (see Joseph and Interverbal) and we long passed David Kirby’s self imposed deadline of 2005 for rates to fall and are fast approaching his new goalpost shifted deadline of 2007 what can we expect from the mercury militia?

Well, excuses as to why that might be of course. Re-alignments of data and misleading impressions. For example, Rick ‘Train Wrecks’ Rollens gave the Schafer Mercury Report an exclusive. Well – there was a whole lot of guff before the actual figures. These were quoted as:

Between April 2002 and April 2003 there were 3,595 persons added to the system. Between April 2003 and April 2004 there were 3,088 persons added to the system. Between April 2004 and April 2005 there were 3,015 persons added to the system. Between April 2005 and April 2006 there were 2,869 persons added to the system.

But, as ever, we can disregard Rollens as he hasn’t isolated the 3 – 5 year old cohort. He counted everyone.

In case you couldn’t tell, I rolled my eyes then.

For a slightly more honest approach (key word: slightly) we turn to David Kirby who posted the following on EoH:

2004 545 -4.72%, 2005 524 -3.85%

Which is the percentage change year on year. However, Kirby tucked his bombshell in the previous paragraph:

It is too early to read a whole lot into these numbers, especially quarter to quarter, and obviously, *a drop in the net gain this quarter (instead of an increase of 6) would have been more supportive of the thimerosal theory*.

EoH

Which is quite a statement. No wonder Rollens is fighting to distance himself from it. I also notice Lenny Schafer didn’t quote Kirby in the SAR.

However Kirby then goes on to tell everyone:

But yearly trends for 3-5 year olds are down…

Which is not true. Yearly trends are still rising. To put it plainly there is a continuing increase in the amount of autistic 3 – 5 year olds entering the CDDS reporting system. What these figures show (except this new quarter) is a less than 1% decrease in the rate of increase year on year. And David Kirby _knows_ this is misleading. In an email exchange with blogger Citizen Cain, Kirby:

…conceded that total cases among 3-5 year olds, *not changes in the rate of increase* is the right measure.

Citizen Cain

More misleading dishonesty Mr Kirby?

So, what can we expect from the mercury militia clinging desperately to the CDDS figures?

So, there’s the misleading conclusions and re-alignments of data. What about the excuses?

Well the biggie will be one that’s touched on by Kirby in his EoH post:

keep in mind that most of these kids are 4 and 5 years old, born between 2000 and the first quarter of 2002 (someone correct me if I got that wrong) and it is impossible to know exactly what thimerosal exposure rates were during that period in California, except to assume that they started to come down, perhaps gradually

Aha – the first emergence of what I shall take honour in calling the Great Backpedal Argument of 2006. In the GBA, mercury militia members will start to claim that rates are not falling because all the thiomersal still sitting on shelves to be used up. Its a _great_ argument as it can’t be proven or disproven – you just have to believe. Sounds familiar eh? Then of course, there’s the compounding factor of the flu vaccine. Except that the flu vaccine is not mandatory, not enforceable and as vaccine uptake is falling generally thanks to the mercury militia I would imagine flu vaccine uptake (and thus thiomersal exposure from this source) is at an all time low.

So back to all the thiomersal containing mainstream vaccines sitting on shelves up and down the country.

According to studies, the shelf life of thiomersal containing vaccines such as DTaP is between 5 – 9 months. Somebody remind me again – how long ago was it that thiomersal containing vaccines were halted for mainstream use? I forget.

And if you do come across some thiomersal containing vaccines, maybe you could send some to Safe Minds Executive Director Sallie Bernard. It seems that they were in very short supply as far back ago as June 2001:

A group of university-based researchers needs several vials of the older DTaP vaccine formulations which contained thimerosal for a legitimate research study. If anyone knows an MD who might have some of these vaccines or knows where to get them, please email me privately. Thank you. Sallie Bernard, Executive Director, Safe Minds.

Onibasu.

Makes you wonder why Ms Bernard didn’t simply wander into any GP’s office and buy some thiomersal containing vaccine off the shelves almost collapsing under the weight of the stuff.

If it was in short enough supply for Ms Bernard to require the help of people finding some back in 2001, how plentiful is the supply going to be either than or now? I’ll wager ‘not very’.

No Nonsense from Joseph

11 Apr

Its that time of year again – quarterly release from CDDS.

Joseph was very quick off the mark with an analysis. I’m going to quote the main points, shut off comments here and point you straight to the source:

As we can see, CDDS autism caseload continues to have strong growth. There’s an unexpected increase in the caseload growth this quarter (what’s usually referred to as “New Cases” by mistake). The prior tendency was for population growth to stabilize. Annual growth (calculated against the corresponding quarter the year before) has dropped a bit, but it still has a long way to go before it matches population growth in the state of California, about 1%, as would be expected in the long run. There is strong growth in the 3-5 age range, which suggests there is no drop in administrative incidence.

Just as a reminder, the 3 – 5 cohort is the cohort that David Kirby agreed was the only one worth measuring.

Despite law changes (Lanterman Act, 2003) specifically aimed at decreasing caseload growth, it’s clear administrative prevalence will continue to increase for a long time to come, perhaps one more decade. Trends in the 3-5 age range do not support an incidence drop following removal of thimerosal from vaccines. I recommend Dr. Geier’s paper be renamed to “Upward Trends in Neurological Disorders Remain Strong Following Removal of Thimerosal from Vaccines” if the paper is to be salvaged in any way.

Indeed.

Meanwhile over on the EoH group, poster Lynn asked if anyone had analysed the new stats yet. From the ringing silence, I guess we can assume they have.

You can comment on this story over at Joseph’s blog.

Enough

10 Apr

_An open letter to Generation Rescue, NAA, SafeMinds, ASA, A-CHAMP, DAN et al._

I’ve had enough.

If I might be permitted to make a few assumptions I believe its accurate to say that _we’ve_ had enough. Who are we?

We’re parents like you. However, unlike you, the self-styled ‘autism community’, we are also autistic people. We are also scientists. We are also professionals working in the field of autism. We represent groups of people that you never can and never will. We are fundamentally different in attitude from you and _we have had enough._

Enough of the lies. Enough of the misrepresentation. Enough of this media circus you are turning autism into.

_You lie._ When the NAA published its scurrilous attack on Paul Shattuck it revealed the depth of its desperation. By wilfully and deliberately *lying* about the ‘Merck’ connection, you revealed yourselves as people willing to do anything and everything to blacken the name of those who simply disagree with you.

When you allege conflicts of interest that amount to absolutely nothing – _and when they know this to be the case_ – then you again reveal yourselves as tawdry and grubby dirt diggers, desperate to besmirch people. The irony of your president having an established and non impartial financial connection to David Kirby and your chairperson having been in the pay of lawyers litigating the thiomersal connection is immense. It boggles both the mind and any ordinary persons sense of common decency. At the absolute least you owe Paul Shattuck an apology.

_You mislead_ . When Generation Rescue _continue_ to state baldly that autism and mercury poisoning are interchangeable – that one is the other and that is all that autism is, it is obvious that that organisation is comprised of absolutist zealots who care nothing for reality, science or truth – all of which are concepts that stand in direct opposition to your beliefs. When you ignore the reality that there is likely to have been _no epidemic of autism_ and yet you continue to use falsely inflated statistics like a 6000% increase in autism _and when *you know* this increase is down to better diagnosis, widening criteria and the fact that its only in the last 15 years or so that autism has been counted separately to other developmental ‘disorders’_ then you move beyond the bounds of simply misleading, you move beyond the bounds of simple innocent ignorance and enter the area of wilful, deliberate manipulation.

When you resort to buying and placing adverts that _you know_ are misleading and with which _you know_ the people you cite do not agree, when you resort to employing the services of media manipulators like Fenton Communications to dress up your spin for you then you have left simple campaigning behind and entered the realm of deliberately misleading, exaggerating and falsifying.

When Generation Rescue employ the services of men like John Best Junior to enter the homes of families then you know something is badly awry with the morals and ethics behind this organisation. These are the words of a Generation Rescue Rescue Angel:

Some “brilliant” goofball coined the term “Homophobia” in a pathetic attempt to bring some small measure of respectability to a perversion. Fortunately for me, I grew up in an era when people were not subjected to public acceptance of sexual perversion. I never “stomped” a queer and I don’t approve of that behavior. I also don’t want to have to hear about this nonsense portrayed as anything near normalcy.

The scientists you quote range from respectable to quacks. You misrepresent the nature of the respectable science and hype the quacks as credible scientists. When your science is conducted by men censured by government and peers (the Geiers) or is conducted by men who behave very curiously such as pre-registering patents that back up future research, source subjects for studies that are undergoing litigation or allegedly financially benefit from these associations (Wakefield) or who refer to autistic children as ‘mad’ (Boyd Haley) or ‘train wrecks’ (Rick Rollens/MIND) or who attempt to make their science relevant _to autism_ where it is clearly not (Hornig, Burbacher, Deth, Bernard) then you have a serious credibility problem.

But none of this – none of it – would matter at all, except for one thing (or several things). You call yourselves the ‘autism community’. You present your manipulations as fact. You fail to understand the good science and twist the bad science to fit your agenda. You rely on people such as David Kirby – a man who is demonstrably dishonest and a man like RFK Jr who invents conspiracies where none exist. These are the people who shape your policy and guide your information – David Kirby, Dom Imus, RFK Jr, Dan Olmsted. Journalists, chat show hosts and a wannabe politico.

Enough is enough. I’ve had it. Up until now, we’ve contented ourselves with correcting your ignorance and dishonesty in blogs, forums and chat rooms. Now we will be finding ways to extend ourselves. Wherever you are quoted, we will follow up. We will make sure that people know the sort of spin you employ, the sort of manipulation you attempt and the sort of people who are aligned to your cause. Because of you, vaccine uptake is dropping. Because of this, epidemics are breaking and people are dying. Because of you the field of autism research is being turned, into the words of Lisa Randall, into a ‘a vipers nest’ where scientists are more and more loth to get involved. Who can blame them when the sort of shameful behaviour in evidence on the Evidence of Harm email list comes to the fore? Parents hassling and abusing people like Paul Shattuck, despite his clear request for them to cease and desist. Parents making alleged threats of property violence against Paul Offit.

Because of you, the field of autism research is in extreme danger of sinking into a dark age. The gains that autistic people themselves have fought for over the last few years are slipping away into a _real_ abyss of ignorance and stigma. This must be stopped. _You_ have to be stopped.

This is about dignity. Its about respect. You have none and you are in the process of taking ours away. We will fight for it. For ourselves, for our children, for our siblings, for the good of diversity and to attack stagnation we will fight.

Get ready.

Upcoming Autism Conference

7 Apr

The Fifth Annual Meeting for Autism Research will shortly be going ahead in Montreal. There’s a few very interesting papers being discussed. Here’s a few abstracts:

No Autism Amongst Inuits From Northern Quebec?

_E. Fombonne, J. Morel, J. Macarthur_

*Background* : Autism has been found in most populations where it has been investigated. We have preliminary evidence that autism does not exist in the Inuit population of Northern Quebec

*Methods* : The authors know extensively the Inuit population (N=12,000) of Northern Quebec. They have been responsible for more than 15 years for pediatric care and special education in the 14 villages of this huge territory. There is a universal free health care and educational system, with repeated periodic medical examinations from birth onwards, compulsory attendance to school, and excellent medical/educational tracking record system for each child

*Results* : No case of autism was ever reported in an Inuit child in this population in the last 15 years. A computer search of discharge medical and psychiatric diagnoses failed to identify an ICD-9 diagnosis suggestive of autism or one of its variant. No case was referred for psychiatric evaluation or special educational assessment that would be consistent with autistic developmental impairments. In order to develop a full epidemiological enquiry, we have conducted a pilot study in 2 villages that demonstrated the feasibility of this planned investigation.

*Conclusion* : Autism appears to not exist amongst Inuits from Northern Quebec. If confirmed, it would have significant implications for the genetic understanding of autism. In addition, as Inuits are exposed through their fish-eating practices to high pre- and post-natal levels of mercury, it would also suggest that high mercury exposure in itself does not increase the risk of autism.

A STUDY OF MERCURY LEVELS IN YOUNG CHILDREN WITH AUTISM USING LABORATORY ANALYSIS OF HAIR SAMPLES

_P. G. Williams, J. Hersh, L. L. Sears_

Autism is a developmental disability characterized by severe, pervasive deficits in social interaction, communication and range of interests and activities. The neurobiologic basis of autism is well accepted, although the specific etiology is unknown. It has been theorized that autism may result from a combination of predisposing genes and environmental factors. While autism has a known association with some environmental factors such as rubella and valproic acid exposure in utero, other proposed environmental mechanisms such as mercury toxicity or other heavy metal exposure have limited research support. Despite this fact, interventions including oral chelation therapy are being used to treat autism after hair, blood or urine samples are analyzed by specialty laboratories. Controls and standards for these laboratories are often unclear with minimal data supporting differences in lab values for children with autism and typically developing children.

Hair samples were obtained from 14 children with autism and 16 controls between the ages of 2 and 6 years. These *samples were then sent to Doctors Data Lab* where mercury levels were reported. *The autism and control groups did not differ significantly in age or gender distribution*. Analysis of hair sample data by t-tests for equality of means and equal variance yielded *no significant difference in mercury levels for the two groups*. Despite the small sample size, results raise questions about the usefulness of evaluation for mercury exposure using hair samples, and about claims of mercury toxicity in children with autism.

BLOOD METAL CONCENTRATIONS IN THE CHARGE STUDY

_I. Hertz-Picciotto, P. G. Green, L. A. Croen, R. Hansen, P. Krakowiak_

*Background* : Adverse effects on neurodevelopment have been observed for lead and mercury. Previous reports of associations between body burdens of mercury and autism have been inconsistent or come from studies lacking rigorous quantitation of metals.

*Objectives* : To determine if blood levels of metals differ between children with versus without autism.

*Methods* : The CHARGE Study has been enrolling a population-based sample of 2-5 year old children with autism (AU), children with developmental delay (DD), and general population (GP) controls frequency matched on age, sex, and geographic region. Venous blood samples were drawn and metals were measured by inductively coupled plasma/mass spectrometry. Metals determinations were completed on 380 total children (261 AU, 40 DD, 79 GP). The AU cases were further divided into regressive (n=101) and early onset (n=119). ANOVA with unequal variances was used to compare means across groups.

*Results* : No significant difference in blood mercury was observed between the AU children (mercury mean±SD: 0.50±1.15 micrograms/dl) and either DD (0.41±0.51 micrograms/dl) or GP (0.51±0.74 micrograms/dl) children. Blood lead values were similar across AU, DD, and GP children (1.38, 1.30, 1.41 micrograms/dl, respectively). Similarly, children with a regressive trajectory versus early onset did not differ in their concentrations of circulating metals.

*Conclusions* : In 2-5 year olds, neither mercury nor lead concentration in peripheral blood of children with autism differs, on average, with that measured in population-based controls. Sponsors: NIEHS, EPA, M.I.N.D. Institute

M.I.N.D? Oh dear, what _will_ Rick Rollens have to say about that> _Thats_ not the result he paid to get!

In the meantime lets all look forward to the full release of these and the many other papers that will be presented.

*Update* Just noticed Autism Street has a similar post up.

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