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Meme time again

15 Jul

Anyone ever notice that ‘meme’ is spelt (well, constructed) ‘me-me’. I merely mention it in passing ;o)

Steve tagged me. The rules are:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I’m not going to tag anyone. Consider this an open invitation to participate should the mood take you.

OK. Bloody hell. Eight.

1. I lived in France for nearly a year. It was great apart from one time I got an abscess in one of my wisdom teeth and had to have it pulled. The first dentist I went to answered the door wearing a bloody apron and stinking of nasty table wine. We parted company immediately. The second one only used a local anaesthetic during the procedure (a root canal). When I got out I drank the best part of a whole bottle of Eau de vie.

2. I once met Lars Ulrich, the drummer from Metallica. He was speeding very badly at the time and he talked even more than usual. I went from awed star-struckness to thinking ‘what a twat’ in the space of 20 mins.

3. Whilst I’m name dropping, last year I literally bumped into Simon Pegg and Nick Frost on the concourse at Birmingham New Street station. It was a Monday a.m. and I was in my usual pre-work, pre-coffee grump and I was just about to snarl something typically Kevy at them when I noticed who they were. They were very pleasant guys (doing the promo tour for the release of Hot Fuzz I assume) and I totally forgot to take a picture of them on my phone. Gah!!

4. My favourite horrible indulgence is dunking bourbon biscuits into tap water and then slurping the whole mess back. Not a pretty picture.

5. I believe book burning is a crime against humanity except in the case of Jeffrey Archer where it would be criminal not to.

6. I proposed to my wife outside a Halfords. We were both sitting on a bench at the time. Its my opinion that the romantic possibilities of car-parts sellers are often overlooked by potential grooms. But even so, the mundanity of the surroundings didn’t distract from her beauty in one single way. And they never have since.

7. My first teacher (I was five) was called Mrs McCabe. She was unbelievably hot.

8. When Anthony (my now 15yo son) was 2 I forgot to tighten up a stairgate properly and he managed to push the whole thing – himself included – down the stairs, riding it like a toboggan all the way down whilst screaming. I ran down after him, heart pounding in horror and guilt and picked him up expecting to be confronted with a mentally scarred, terrified toddler. Turns out he’d been laughing, not screaming. ‘AGAIN, AGAIN’ he yelled as my blood pressure reached Chernobyl velocity.

CDDS and full syndrome arseholes

14 Jul

Every god-damn quarter, without fail. Every single one. The CDDS data gets released – Rick Rollens releases his usual ‘full syndrome’ crapola and tells us how autism is still skyrocketing and does his best Chicken Little impression and David Kirby chews at the edges of the data to try and find something that will support the idea that thiomersal plays any kind of role in autism.

Its getting really, really old.

Please let me say it to you one more time.

CDDS is not good source data for epidemiology. They say so themselves.

When CDDS refer to ‘full syndrome autism’ they are not, repeat, not referring to classical autism. See this form here? CDDS use it to record autism. It was designed in the 1970’s. The version in use today was last updated in 1986. Don’t believe me? Ask them.

Item 23 is where the term ‘full syndrome’ is used. This term is today utterly without meaning. It is the only place to record autism at all.

If we trun to this document and go to page 71 we can see the section dealing with autism. In terms of _having_ autism, a person either can, can’t or have autistic-like symptoms associated with mental retardation. Its not until page 77 that we get to any kind of recording of degree of severity. *Note that this has no bearing on whether a person _has_ autism* . That is already indicated.

Here is what CDDS passed on to me. I promised not to attribute this quote so I won’t but if anyone wants to double check then an email to CDDS would back me up:

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called “Autism.” But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

You might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers–for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth—are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

I really don’t know how much clearer this information can possibly be. And yet we still have full syndrome arseholes like Rick Rollens sending out emails that contain:

As stated many times before in these Reports, the numbers being reported by DDS only reflect those children that have received a professional diagnosis of full syndrome DSM IV autism, and do not include those with any other autism spectrum disorder such as PDD, NOS, Asperger’s, HFA, Retts, etc

So Rick:

a) Its impossible for a document/process written in 1978 and updated in 1986 to reflect the DSM IV.
b) The numbers quite clearly _do_ contain PDD-NOS, Aspergers Syndrome and Rett Syndrome.

And hey, if CDDS data is good then how would the following be explained?

It’s now 2005. Mercury started to be removed from vaccines roughly in 2001, we don’t know exactly when as the FDA won’t tell us, but kids entering the system now, four year olds for example in California entering the Dept of Developmental Services [CDDS] were born in 2001. So those kids theoretically get less mercury on average than kids born in 2000. So we should see fewer cases entering the system this year than we did last year.

– David Kirby

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

– David Kirby

Late 2006 should be the first time that rates go down,” said Handley. “If they don’t, our. hypothesis will need to be reexamined.

– JB Handley

Safe Minds and David Kirby

5 Jul

Suspicions have been circling for a long time that there was more than just coincidence to the timing of writing and publication of Kirby’s Evidence of Harm. Those suspicions were enhanced for me when it became clear that a lot of Kirby’s associations with certain autism/anti-vaccine groups such as the National Autism Association were on a financial footing.

The ‘official’ story regarding the writing of Evidence of Harm, as reported by Kirby himself, was that Kirby was casting about for something to write about of book length and had been approached by several autism parents who wanted to share their beliefs that vaccines had made their kids autistic. According to Kirby, he was skeptical and unsure about whether to proceed with it or not. What made up his mind apparently was seeing a news report that a politician had managed to attach a no fault rider to a bill passing through Congress, absolving vaccine makers of any legal responsibility.

However, I don’t believe him. Up until recently, that belief was simply a belief. Rumours circulated that Sallie Bernard of Safe Minds was listed as the domain controller (i.e. she’d bought and paid for) the domain evidenceofharm.com. I emailed her to ask her one way or the other. She refused to answer that question. Kathleen Seidel has asked David Kirby that question. He refused to answer.

Why does it matter? Because Kirby claims to be impartial in this debate. His reviewers claim he ‘walks the middle line’ in his book. that his account is ‘even handed’. I would like to know how someone who has an established financial relationship to one major autism/anti-vax group can possibly be impartial. Would the NAA continue to fund Kirby’s website if he said he didn’t think thiomersal caused autism? I doubt it.

Turning our attention to Safe Minds, we can look at their records – records they must supply be law as they’re a non-profit organisation – and see exactly what they have financed. You can access these records via the orgs IRS Form 990:

Form 990 is an annual reporting return that certain federally tax-exempt organizations must file with the IRS. It provides information on the filing organization’s mission, programs, and finances.

Attached is Safe Minds 990 for 2005. It has some interesting details in it.

If we look at line 43, it has a listing amount of $99,196 for ‘Professional Fees’ expenses placed under the ‘Program Services’ Category.

This means that they paid people they considered professionals almost $100k to provide services to their programs. On page 15 of this same document they go into detail about what these services are.

…..THE BOOK “EVIDENCE OF HARM, MERCURY IN VACCINES AND THE AUSTISM EPIDEMIC: A MEDICAL CONTROVERSY” WAS RELEASED IN 2004 AND SAFEMINDS PRESIDENT, LYN REDWOOD, WAS FEATURED ON THE MONTEL WILLIAMS SHOW ALONG WITH AUTHOR, DAVID KIRBY. THIS IMPORTANT BOOK EXAMINES BOTH THE PERSONAL STORIES OF FAMILIES AND THE UNFOLDING DRAMA IN THE COURTS AND HALLS OF CONGRESS.

This is listed as a ‘Program Service Accomplishment’.

So what can we conclude? To me, this is pretty damning evidence that David Kirby was paid by Safe Minds to write Evidence of Harm. It certainly ties in with Kirby’s other financial benefits from the NAA. So much for impartiality.

I have some questions for Safe Minds and David Kirby.

1) Did David Kirby receive any kind of financial incentive from Safe Minds or NAA or any of their boards prior to writing Evidence of Harm?
2) If so, how much?
3) If not, please explain the 990 form from 2005 above and tell us exactly what the information in it means.

New Design

3 Jul

No you haven’t gone mad or landed somewhere else ;o)

I’m taking a new design approach – a bit more minimalist accessible.

This is not the final thing. This is a ‘standard’ template designed by someone else. I#ll be building on this design to make it more mine but it won’t all happen at once. What design bloggers call a ‘live redesign’ in that it is redesigned right before your very eyes!!!!

What will change?

30 Jun

The first of the nine ‘test’ Autism Omnibus cases has wrapped up. This was also the first of the designated three that will attempt to associate autism with MMR _and_ Thiomersal causation.

In todays’ Wall Street Journal, Professor Roy Richard Grinker, author of Unstrange Minds wraps up what we’ve seen over the last couple of weeks:

Over the last three weeks, I listened to testimony in the first of nine test cases in the U.S. Vaccine Court (Cedillo v. Health and Human Services) considering the question of whether a mercury-based vaccine preservative called thimerosal (which used to be in many vaccines), or the MMR (Measles, Mumps, Rubella) vaccine, or both together, caused autism in Michelle Cedillo, the plaintiffs’ daughter.

I heard some of the world’s leading experts on autism, immunology, and vaccines testify that there is no biological model to account for an autism-vaccine connection, no scientific evidence or credible studies linking the two. They argue, instead, that autism is largely genetic. And yet just last week, Robert F. Kennedy, Jr., wrote in the Huffington Post that there are “hundreds of research studies” from a dozen countries providing “undeniable” proof that vaccines cause autism and Rep. Dan Burton (R-Indiana) wrote a letter to the president of NBC claiming that there is increasingly conclusive evidence that thimerosal caused an “epidemic” of autism. Scores of websites and autism advocacy groups are convinced of the connection, and the vast majority of scientists and physicians can’t understand why.

………….

The scientific testimony has been devastating to the plaintiffs because the recognized experts on autism, vaccines, and immunology do not support even one of these premises, let alone a linkage between any of them. The only thing the government and Cedillos agree on is that Michelle Cedillo has autism.

However, I can assure you that those who support the Cedillo’s – and the Cedillo’s themselves don’t see it like that.

I was able to attend the hearing on Friday.

As I sat in the court room and listen to the twisted bull generated by the defense, I wanted to scream out, “you have proof of what
thimerisol does in the human body-look at all these damaged kids.”

This was posted by Holly (I assume Bortfield) on the Yahoo EoH group. Her response typifies exactly why it won’t make one shred of difference to these people what the outcome of the Cedillo case is – or the other eight to come.

These are not people who are swayed by science. To them, decent, peer reviewed science is ‘twisted bull’. To them idiocy posted to JPANDS, Medical Veritas etc is gospel truth.

This court hearing revealed once and for all Andrew Wakefield’s deliberate falsification of science and the O’Leary labs accidental false reporting of negative samples. In the O’Leary lab it was sloppy science. In Wakefield’s hands it was knowingly ignoring evidence that showed his error plainly. Without Wakefield and without the O’Leary results there was no MMR association to autism whatsoever. That testimony alone is enough to sink the Cedillo case and all other MMR related cases that may come after.

But as Arthur Allen writes in Slate:

None of that moves Laura Wildman, 47, whose son’s case is before the court and who drove from her home near Pittsburgh to watch the hearing, which ended this week. “I know what happened to my son after he got his MMR shot,” she told me. “I have no doubt. There’s no way they’ll convince me that all these kids were not damaged by vaccines.”

At some point we may have to realise that what we are dealing with here is simply blind, deliberate ignorance.

Even the plaintiffs lawyers realise this. Here’s a telling quote from Michelle Cedillo’s lawyer:

The government position is backed by the overwhelming weight of scientific evidence, which has repeatedly found the vaccines safe. But what the Cedillos and other parents lack in hard data, they have made up for with a stubborn passion and sorrow that science cannot dispute. _”It is parents versus science,”_ said Kevin Conway, one of the attorneys for the Cedillos.

Parents vs science. Indeed it is.

The real sorrow here is that the Cedillo’s continue, in the face of all reason, logic and evidence, to passionately insist MMR caused Michelle’s autism.

On the Evidence of Harm yahoo group – and on various other Yahoo groups, the conspiracy theories are already being polished.

Theory one states that the media – bought off by Pharma – have reported nothing but science and dismissed the opinions of parents. This theory goes on to continue to suggest that the three Special Masters will be under the sway of the media.

Its true that the media have not been kind to the mercury militia. This is because there is nothing to write about in their beliefs except for the fact that they are beliefs. The science lies with Respondents.

Theory two suggests that the Special Masters are Pharma plants. Various members of the mercury militia are carefully combing through the backgrounds of these three Special Masters for Pharma connections they can wave about.

Will they ever let this go? Of course not. You cannot reason someone out of a belief they did not reason themselves into.

Justice for Katie

28 Jun

Remember Katie

When Mike and Paul McCarron came to visit us recently, one of the most sombre and important parts of the day was them giving us some of the ribbon that they had selected to remember Katie. They had fashioned the ribbon into remembrance bows and as well as some of the loose ribbon, gave me one of the bows.

The bows are worn when the McCarrons go to court to do justice for Katie. I am proud and honoured beyond the capacity of words to express that I too, can wear my bow on the days the McCarrons go to court.

Today is one such day. A very important day. Today the judge who will hear the trial will decide if the confessions that Karen McCarron made (including the confessions made to the Police) will be admissible as evidence in the trial.

It may well sound strange to you that a confession – or in this case, a series of them – could possibly _not_ be admissible as evidence. It certainly did to me. It may well also sound strange to you that not only could a mother kill her child, she could also callously attempt to wriggle out of what she has done by trying to halt the admission of confessions she freely made into the evidence the court can hear. It certainly did to me.

Tomorrow is not the trial. It is not even the start of the trial. However, tomorrow could be the first day that Katie finally has just the twinkling possibility of some justice in her name.

On other subjects

Someone else who would benefit from some justice is Patrick Holford. Read where at NHS Blog Doctor, Holford Watch and Mike’s blog.

Bitter Sweet

17 Jun

One of the frustrating things that often strikes me about the direction blogging has taken me in is the fact that the vast majority of the people I consider friends I have never actually spoken to, or met and who I actually live in a different continent from.

Of course I often receive pictures, podcasts or video of events that my online friends have participated in. Camille, Kassiane, Sue Senator, Estee, Amanda, Kathleen, Kristina and more. But this isn’t the same.

However, earlier this year, my family was blessed with a visit from two people who I both very much wanted to meet and yet at the same time was pained at the ultimate reason we finally met.

I first blogged about Katie not long after she was killed. It was then, and still remains, the hardest post I have ever written. Autistic children have been murdered before and since Katie died and I wrote about them too but although they horrified and saddened me, Katie’s death remains most memorable to me. Possibly because I have two little girls who bracket Katie’s age and the thought of them dying fills me with a terror that I cannot describe.

Katie’s grandad read that post and the video of Meg on her trampoline that accompanied it. The posting of that was intended to be our family’s tribute to Katie’s life. A little girl having fun.

But something happened I did not expect. Katie’s paternal grandad, Mike, read that post and saw that video and we started to communicate. Not about the trial but about our shared experiences with autistic little girls. I also swapped emails with Katie’s paternal uncle.

Over the course of the last year, Mike and I have developed a warm friendship and have swapped addresses, pictures of the family, birthday cards for family members. We talk often about Katie and the wonderful life her Dad and her paternal Grandma gave her. Our ability to converse across internal boundaries take a step up when we started to use Skype to actually talk directly. And believe me, if you think the world has exhausted its sense of wonder then you should experience listening to mid-afternoon bird song in the background of a conversation you are having with someone over 4000 miles away whilst the darkness of evening descends at your house.

I have also talked with Katie’s dad, grandma and uncle and listened to the sounds of Katie’s younger sister playing happily.

These people are family now. There’s no other way to think of them.

Earlier this year, Mike told me that he and Paul were coming over to the UK to visit. Brilliant news. I was so looking forward to meeting them finally.

We had a fantastic time. Not that we did very much, we just hung out, talked and played with the girls. I’ll admit that I had been nervous – how could we all be expected to get on when we’d never really met? – and yet those worries were banished. Within 10 minutes we were all chatting and laughing away with each other as though we’d known each other all our lives. Tabitha was absolutely smitten with Paul and followed him around begging to be picked up most of the day, which Paul – a natural gentleman in every sense of the word – was happy to do. Mike got some grandpa kisses from Meg which I believe made his day. Meg is naturally reticent around new people but she knew Mike and Paul were good people immediately.

And there was sadness too. Nobody could forget why we were all together that day and I feel I speak for all of us when I say that if I could make a promise never to have met Mike that Katie could be returned to them, that promise would be made in a heartbeat. Mike and Paul brought over some of the ribbon Kassiane had selected for Katie and which Paul and Mike wore with honour every time they went to court to battle for Katie. That was a humbling experience for me.

Mike and Paul stayed long after the girls had gone to bed. Naomi and I treasured every minute we had with them. They are Megan and Tabitha’s uncle and grandpa in every sense that matters. Gail and Em are their grandma and cousin in every sense that matters.

Terrible, awful things happen to the best people. What was done to Katie has not yet even been tried in court. I want to make sure that people remember that Katie lived. This little girl I’ve never met and heart breakingly, never will. Whilst the vaccine trial goes on, remember that this is going on too. Although, that day, we never talked about the trial it was in their eyes and gestures. How could it not be? For the two families that have come together into one, I wish there was some way – any other way – we could’ve become as close as we are now.

At the end of this month, the motions that are being heard now – those motions to suppress the confessions of Katie’s murderer – will be concluded. We must hope that justice prevails. Katie, my niece I never met, deserves no less.

Autism Omnibus and David Kirby

14 Jun

And so, as we approach the end of week one of the vaccine trial, its been truly fascinating to read (albeit a day behind my US counterparts) the ongoing proceedings.

One of the things that fascinated me was the culling of the ‘expert witness’ list. Before Monday – the start of the trial – the expert list comprised:

Jim Adams PhD
Harland Austin D. Sc.
David S Baskin MD
Jeffrey Bradstreet M.D.
Richard Carlton Deth PhD
Mark Geier MD
M. Eric Gershwin MD
Phillippe Grandjean, Ph.D.
Sander Greenland, Dr. PH
Boyd E. Hayley, Ph D
Robert Hirsch PhD
Arthur Krigsman MD
Cathy A Lally, Master P.H.
Mary Megson, MD
Elizabeth Mumper MD
Andrew J. Wakefield, MB, BS, FRCS, FRCPath

And on Monday, the people left from this list were:

Arthur Krigsman MD.

Amazing. I can only surmise that the others were considered as liabilities. Certainly when one considers the stupidity of Haley, Adams, Geier and Wakefield then this looks like a good move. They would’ve been crucified on cross examination. It comes to something when only one person from the original list is considered a safe bet and then he is also crucified on cross examination.

Q. Doctor, your C.V. states that you’re a clinical assistant professor at New York University.
Is that correct?

A. Correct.

Q. Are you currently on staff there?

A. Correct.

Q. When was the last time you taught a class at NYU?

A. I haven’t taught there.

Q. You’ve never taught a class at NYU?

A. I’m on staff there.

Q. Are you salaried?

A. From NYU?

Q. Yes.

A. No.

Q. Have you ever been salaried at NYU?

A. No

I listened closely to the Petitioners opening statement and was bewildered. I’ll quote the ACHAMP blog:

Mr. Powers argued that over the last five years, since the Omnibus Autism Proceeding commenced, the Respondent in the Proceeding, with the Department of Justice acting as its counsel, had been standing “shoulder to shoulder” with industry and that it had placed many obstacles in Petitioners’ way. He noted obstacles of a short statute of limitations; very limited rights of discovery to gain necessary background information to build a case, particularly discovery from the Vaccine Safety Datalink; and selective use of materials from MMR litigation in the United Kingdom that was inaccessible to Petitioners; among other uncooperative tactics.

Not only are most of these things not _quite_ as painted, it seemed to me that Powers was presenting a long litany of excuses to be presented when the case fails. He’s simply fuelling the conspiracy theorist fire.

Also stoking the flames of that fire is one David Kirby. He made a recent HuffPo blog entry that berated critics for inflating the possibilities of what might happen if the parents win:

Critics of the autism claims also contend that a victory in court by any of the families would drive panicked parents away from immunizing their children at all, resulting in new epidemics of infectious disease and lots of sick and dying youngsters…..Nobody wants to see measles, or mumps, or polio sweep the country. But I don’t think that will happen.

Yeah? Its already happening you idiot.

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic due to Andrew Wakefield’s unfounded scaremongering regarding the MMR vaccine. And worse:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, this year, 18 months after this warning, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

Kirby has his own ‘dire warnings’ about what might happen if the parents lose:

And then there is the Middle East. Osama, for one, has a very extended family. We are exporting thimerosal containing vaccines to many Muslim nations. Some vaccines contain not only mercury, but products derived from pigs. I don’t need to tell you where I am going with this train of thought. You already know.

Actually, I do. You’re trying to instil fear of Muslims into people to support your meaningless rhetoric you nasty little racist.

Non, je ne regrette rien

13 Jun

Right. This is it. Absolutely the last time this subject gets raised on this blog. Comments will not be enabled on this post.

It’s the last time because I’m sick to death of hearing about it, thinking about it and discussing it. If anybody else wants to carry on discussing it – be my guest. But you won’t do it here.

First and foremost is that you understand that I regret absolutely nothing. I retract absolutely nothing. I apologise for none of my words and actions. I meant every single one of them and stand by them.

It was made clear to me by Larry that I wasn’t welcome in what he thinks of as neurodiversity. That’s fine, I can live with that. What he failed to specify, other than insults and vague allegations was _why_ I, and a loose group of people referred to as ‘the parents’ weren’t welcome. We sought no leadership. We sought no setting of the agenda. We just wanted to do our bit.

I asked calmly and politely – at first – what it was we – I – had done specifically. No answer, but more snideness. Eventually I realised that nothing of any substance would come from Larry. I retreated after speaking my mind about what I thought about Larry. It wasn’t good but it was accurate. It was my opinion.

After a week, I came back to my blog and explained my thoughts on the whole matter. Things were calming down. I avoided Larry. I didn’t seek out his comments, thoughts or opinions. Then yesterday I come back to my blog on a thread that is indeed heated but respectful and what do I find? Three long comments from – you guessed it – Larry. More of the same insults, murky accusations and pompous posturing. I let him have both barrels. He deserved it.

So – bullying. One ‘Donna’ who’d been on this blog many times and doesn’t like me or what I have to say accuses me of bullying poor poor Larry. Let me remind people who was ‘chasing’ who. I want to have no interaction with Larry if I can possibly avoid it. He sought it out and left three long, whiny, disrespectful comments. I’m not easily provoked but that did it. If anyone wants to avoid bullying I’d suggest to them that chasing after the ‘bully’ bleating ‘please notice me’ is not a great idea. I’d also like to offer a tip to would-be bullies: it seems that you don’t have to do any chasing these days. Apparently people coming in to your turf and running their mouths off, making empty accusations and calling you names is OK but if you respond in kind, they can cry about what a nasty bully you are.

As I said in my previous post – I’ve been used as Larry’s punch bag already. Not any more. If Larry – or anyone else – comes to my blog looking for a fight then they _will_ get one.

Humour. Its a personal thing. Some people don’t like other peoples humour. That I can understand. But suggesting that someone elses sense of what’s funny is inherently wrong because they don’t share it? Forget it.

First I’m told what I can and can’t blog about. Now I’m told what I can and can’t laugh about. What’s next? Anyone want to let me know where my black shirt is? Double plus ungood.

I really am beginning to wonder if the whole idea of _some_ autistic people wanting allies is true. We had a chance to start something great here. As far as I’m personally concerned, that’s dead in the water. Do you want perfect parents? We might not be perfect but we’re better than CAN parents. You had a chance to work with us. Make us better. Instead you’ve driven this one away for no better reason than one suspicious man couldn’t reign in his ego.

At least 20 people have emailed me to tell me that Larry has been like this since forever. They think he is jealous of the fact that I and other parents have been interviewed. He confirms this by stating that autistic people should be interviewed, not parents. He’s right, they should.

In early April this year I was contacted by a journalist from The Observer in the UK. She wanted to speak to someone connected with the autism advocacy movement. I told her she’s be best speaking to autistic people in the UK. I told her I would mail her details to a few UK autistic people I knew so they could speak their piece. True advocacy, right from the horses mouth. One of those I contacted was Larry.

He never replied to me and he never contacted the journalist. I know this as she contacted me increasingly desperately as no one had contacted her. She didn’t want to hear my voice, she wanted to hear from autistic people about autism advocacy. Nobody, including Larry, could be bothered.

Remember this next time you hear Larry banging on about rights and agendas. He’s full of hot air.

And that is that.

From now on I blog about what I want to blog about. That will mostly be about autism related quackery. Larry is banned from commenting on this blog. Any comment that touches on Larry in any way or on any of these discussions will be deleted.

I don’t consider myself part of neurodiversity, although I am clearly neurodiverse. I will gladly stand with autistic allies – both autistic people, their parents and professionals – who want nothing to do with a cure and who want rights for autistic people to come first in autism advocacy. I will not stand with anyone at all who wants to accuse me of wrong doing without any substance to their claims or who wants to dictate what I should and shouldn’t talk about.

On being different

10 Jun

I think a lot of people operate under the misconception that there is this group called ‘NT’ and this group called ‘ND’ and that all in the ‘ND’ group are the same as each other. Not so. The way I was taught to think about neurodiversity is that it is comprised of a group of people with differing neurologies. So to me, anyone who’s difference is primarily stemming from a neurological difference belongs in that wider grouping. Autism. Schizophrenia. Learning Disabilities (retardation in US-speak). Tourettes. OCD. Bipolar. Blindness (where the blindness originates from the optic nerve). Down Syndrome. Epilepsy. Dyscalculia. A hundred more I can’t think of right now.

Autism is not the most or the least of these subgroups encompassed by neurodiversity. It’s simply one amongst many.

This is what I was taught about neurodiversity and this is what I hope it is about. If it isn’t then I have misled an awful lot of people over the last 3 years, including myself.

I carry one of the diagnosis’ listed above. I have type 1 rapid cycling bipolar disorder (Wikipedia). The first time I can remember feeling that I was decidedly different in outlook, thought patterns, behaviour and generally _being_ was when I was about 9 – 10 years old. However, I have not carried an official diagnosis anywhere _near_ as long as that. I’m nearly 40 now. 25 – 30 years ago, just as with autism, there weren’t the same amount of diagnostic specialists who knew the signs and symptoms. Meh. Such is life. It’s well managed now which is a massive relief.

I don’t want to wallow in myself too much but I want to provide some context for how I feel about neurodiversity and how I felt last week when everything kicked off.

Occasionally – and not very often – I may need to take a neuroleptic. These are serious drugs, administered (hopefully) with great care. There are very good reasons why they should be prescribed as an absolute last resort to autistic people.

That said, for people with _my_ neurology they are sometimes necessary.

I had an email exchange last week with someone who put forward the idea that the continued use of neuroleptics to autistic people was an issue of great importance that needed to be discussed. This is something I entirely agree with. My own medication is carefully reviewed every 2 months. I hate taking pills and the less I have to take, the better.

In the course of this exchange, the phrase ‘brain damaged’ was used in a way that seemed to indicate to me that those who may have to use neuroleptics have damaged brains. I was somewhat taken aback by this. My immediate association was the idiotic null comparisons of John Best of autistic people having ‘rotting brains’. It seemed to me that using overly inflammatory and denigrating language such as this was not a good way to promote the idea of neurodiversity. I fully accept that neuroleptics are far from ideal and that there is good emerging science to indicate chronic overprescription of neuroleptics to autistic people but the use of the phrase ‘brain damaged’ was a step too far. Was this really how this person saw me?

I don’t think that this person meant to be offensive in any way. But let me tell you a story.

My grandad (now dead) served in WWII and had a British Asian man in his regiment. My grandad used to refer to him as ‘Chinky Charlie’ until one day I asked him why he was called that – it was then I learnt that ‘Chinky Charlie’ was of Chinese descent. His other nickname was ‘Yellow Charlie’ apparently. I was really shocked and told my grandad that I considered that racism. I asked him what ‘Chinky Charlie’s’ real name was – he couldn’t remember. But he said ‘he didn’t mind – he laughed it off’. I’ll bet he did. What option did he have?

My grandad didn’t _mean_ to be racist. He wasn’t intentionally trying to denigrate his fellow soldier in terms of his race. He also told me what a deep respect this man carried amongst the regiment. However, the intention – or lack of it – is irrelevant. He _was_ being racist. He was characterising someone on their race. He couldn’t even remember this guys actual name!

I hope my point is clear. Words matter. Their intent may not be to offend (its easy to tell when someone is purposefully being offensive) but if neurodiversity truly is an umbrella community for a wide variety of differing neurologies as I thought it was then care is needed. We don’t have to tip-toe around each other (that would just become a PC nightmare) but the willingness to not generalise and not use comparisons that a truly ignorant man like John Best would use are not only necessary but vital.

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