RFK Jr – Attack on sense

20 Jun

You can always tell when the mercury militia are hurting – they wheel out their biggest gun. The biggest gun they have in their armoury is RFK Jr, a man who seems to live on the reputation of his dead family members and not a lot else. Last time he dropped the biggest, steamingest, drippiest turd on the web in the fullsome (and entirely accurate) language of Orac.

Well, after reading RFK Jr’s latest verbal tantrum I think Orac might need to get out the Dynorod and try and flush this particular big shit in a small bowl away as quickly as possible.

RFK Jr claims firstly that:

The poisonous public attacks on Katie Wright this week–for revealing that her autistic son Christian (grandson of NBC Chair Bob Wright), has recovered significant function after chelation treatments to remove mercury — surprised many observers unfamiliar with the acrimonious debate over the mercury-based vaccine preservative Thimerosal.

Christian Wright has ‘recovered significant function’ has he? Any evidence for that? Any evidence even if he has that _chelation_ is responsible for this? No, didn’t think so. I’m going to go right ahead and assume that Christian Wright isn’t any more ‘significantly recovered’ than the other 90% + kids on the Generation Rescue page.

Kennedy may be unfamiliar with the sort of PR bullshit that Katie Wright’s self confessed mentor likes to spin so let me clue him in a little: The chelationistas love to claim ‘thousands of cured kids’ but when pressed, cults like Generation Rescue can only display 76 and when one examines those 76 carefully only 6 report their kids as recovered/cured/whatever. The situation with Katie Wright’s mentors is so ridiculous that I got my own daughters details published on their website as a ‘recovered’ kid.

So, Kennedy will have to forgive me if I’m less than impressed with the (unfounded) claim of ‘significant recovery’.

Kennedy then goes on to paint loving images of the mercury militia’s members:

Instead of a desperate mob of irrational hysterics, I’ve found the anti-Thimerosal activists for the most part to be calm, grounded and extraordinarily patient. As a group, they are highly educated. Many of them are doctors, nurses, schoolteachers, pharmacists, psychologists, Ph.D.s and other professionals.

I must admit I did start chuckling when I read this. I’m sure some of these people are clam and grounded but ‘for the most part’ they are comprised of racist, homophobic dullards such as John Best Jr – a man thrown out of 4 autism groups at the last count and who likes to fist fight his autistic son, or people Erik Nanstiel who holds down his autistic daughter to inject her with pointless, dangerous drugs. Or people like Christine Heeren who takes her son to a doctor who chelates him with IV’s of garlic and vinegar. Or people like Julia Berle who loves to crow about her ‘recovered’ son, neglecting to state that he was diagnosed, treated and ‘cured’ by Scientologists.

_These_ are your ‘calm, grounded’ people Mr Kennedy.

Kennedy goes on to describe the ‘overwhelming science’ behind the thiomersal hypothesis:

hundreds of research studies from dozens of countries showing the undeniable connection between mercury and Thimerosal and a wide range of neurological illnesses. In response to the overwhelming science, CDC and the pharmaceutical industry ginned up four European studies designed to disguise the link between autism and Thimerosal.

Wow. Kennedy must be privy to studies that the rest of the world isn’t. Where are these ‘hundreds of research studies…showing the undeniable connection’ between thiomersal and autism? Up your ass Mr Kennedy? How come they’ve not been used in the Vaccine court hearing of the last week? You’re a lawyer right? Get your legal backside down there and save the day with your ‘hundreds of research studies’.

The truth is Mr Kennedy, that the vast majority (key word: vast) of the ‘science’ done thus far by the militia is not of sufficient quality to be published in decent science publications. These ‘hundreds of research studies’ in habit the murky world of JAPANDS, Medical Hypothesis and Medical Veritas. These aren’t science journals Mr Kennedy, they’re agenda driven vanity publishers. Much like your good self.

Battling further through the stupid we come to this:

Ironically, it is the same voices that once blamed autism on “bad parenting,” and “uninvolved” moms that are now faulting these mothers for being too involved.

Er, what? Who has said that? When? Where? Cite your sources Mr Kennedy. You might also want to check, but I’m pretty sure that Bruno Bettleheim, the man who actually _did_ blame autism on bad parenting isn’t so vocal on the subject anymore. Possibly due to him being dead the last seventeen years.

You know absolutely nothing Mr Kennedy and yet you feel duty bound to poke your oar in anyway. Participate by all means, but do so from a position of knowledge, not ignorance.

Others fed up with RFK Jr

Steven Novella
Denialsim Blog
Orac

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: Vera Byers the, uh, expert

16 Jun

The Omnibus case needs to establish (at this time) two issuses: causation to Michelle Cedillo in particular and also general causation in that thiomersal and MMR in combination cause Michelle’s autism. So far the expert witnesses for the Plaintiffs have been less than stellar but on Day 4 you could almost hear the sound of a barrel bottom being scraped.

The establishment of witnesses as ‘expert’ is vital to each sides case. They have to establish to the Special Masters (which by the way is a great title – do they have long flowing robes and carry light sabres?) that _their_ experts are indeed that – experts. Bear that in mind as you read the rest of this.

The cross examination of Vera Byers was an exercise in the destruction of a persons expert credibility. No wonder the Petitoners team decided against putting Geier, Bradstreet, Haley et al on the stand. It would’ve been a massacre.

Q: You’re not certified in allergy and immunology, are you?
A: I’m board eligible. I have not taken the test.

Q: Is board eligible a phrase that’s recognized by the organization that certifies allergists and immunologists?
A: Yes, it is…

Q: You’ll see on your screen a letter from the American Board of Allergy and Immunology referencing your status with that organization. They note that the board neither recognizes, uses nor defines the term board eligible.
A Okay.
Q: So you’ve been essentially representing that that is a qualification that you have in terms of rendering an opinion about immunology?
A: Yes, I have.

Q: You mention in your resume that you’re the medical director of the four doctor team responsible for filing the Biologics License Application for Enbrel?
A: That is not exactly correct. I was a consultant medical director. There were I think either four or five physician members of the team.
Q: So that part is perhaps a misstatement on your curriculum vitae?

[NB: Here’s the wording of Byers CV: _1998 – 2000: Immunex Corp: Medical director on the team responsible for filing the BLA for for Enbrel in methotrexate resistant rheumatoid arthritis, and as initial therapy for rheumatoid arthritis._ The section this is in is entitled: Consulting Medical Director. Misleading and ambiguous in the extreme.]

Q: If we were to check the files at FDA to see whether your name appears at all on any of the documents submitted by Immunex for Enbrel, would your name appear?
A: I’m sorry. I don’t know.
Q: We checked at FDA. Your name doesn’t appear on any of the documents submitted by Immunex on the Biologics License Application

Q: You talked this morning about Nottingham University.
A: Yes.
Q: On your CV you say that you’re still a member of the faculty there. Is that true?
A: No. I think I dropped off.
Q: So your CV is inaccurate? You are not still on the faculty of Nottingham University?
A: That’s correct. It sounds like it’s an old CV.

[NB: This detail is also on Byers CV on her website]

Q: Your CV also lists you as a faculty member at University of California-San Francisco. Are you still a member of that faculty?
A: To my knowledge I am, unless this hearing has kicked me off.
Q: We checked with University of California-San 3 Francisco. What was your faculty role at University of California?
A: I’m on the adjunct series.
Q: What did you do there?
A: I did research in poison oak and ivy dermatitis, went on rounds with the docs.
Q: How long ago was that?
A: Let me see. Through from about 1974 through about 1981, and then I went back again in 1984 and was there episodically probably through about two years ago.
……
Q: Okay. About a decade ago for the dermatitis? About a decade ago for the dermatitis?
A: About, yes.
Q: Any other involvement at UCSF, at University of California-San Francisco?
A: Well, I use their library and I go to their parties…..

Amazing. Apparently affiliation with a major university can be claimed by using the library and going to parties.

Q: They in their response indicated that your participation was I believe at best gave very occasional lectures.
A: Oh, no. That’s not true. I don’t know why they said that. Maybe they just don’t know. Who did it come from? Oh, Bruce Wintroub? See, Bruce Wintroub is the head of dermatology, right? This was in biostatistics.
Q: You worked there in biostatistics?
A: No. I took the courses in biostatistics.
Q: You took courses?
A: Yes.

Seems mini-Geier isn’t the only person who likes to claim institutional affiliation from being a student.

Q: Now, in the last decade, about the last decade, you’ve only seen patients in consultation for litigation purposes, correct?
A: They’re not specifically for litigation purposes,…..
…..
Q:Do you recall testifying in a case in February of this year, a vaccine case?
A: Probably. Was that you?
Q: Yes, it was.
A: Hello.
Q: Welcome back. Now, do you recall what your answer was about whether you treated patients or whether you saw them in consultation for litigation purposes at that time?
A: I’m sorry. I don’t.
Q: Would it refresh your recollection then to know that you testified at that time that for approximately the last 10 years you had only seen 16 patients for litigation consultation purposes?

Ouch.

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.

Simpsonwood and Autism – Laugh? I nearly cried

11 Jun

I found a link to Wade’s blog that talked basically about how proud he was of the 10 or so people who attended the ‘Simpsonwood remembered‘ conference this weekend (big get together for tinfoil hat fanciers).

He linked to a few images of the event and as if I needed it, I was given a pertinent reminder of the average intelligence of the rank and file Mercury Militia members.

Please, feel free to point and laugh.

Image of 3 mercury militia members holding a sign at Simpsonwood rally. The sign tells people to google 'simsonwood'

This, by the way, supplants my other favourite picture, taken at a David Kirby book reading:

picture of Evidence of Harm talk being held in 'Science Fiction' area of bookstore

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.

Rendering unto

9 Jun

I’ve taken a deliberate and purposeful step away from everything autism related (online anyway) this last week and to be perfectly frank, its been a breath of fresh air. I’ve done some hard thinking and some hard talking/listening to family and friends and tried very hard to firstly compartmentalise what exactly I found so upsetting and offensive about the events of last weekend.

First, I was dismayed to find someone I considered an ally calling me names. It doesn’t matter under what guise it was – literary allusion or not – if you call people names they’re never going to find it easy to talk _with_ you.

I still haven’t been able to resolve the sheer mindless immaturity of this act and so I simply won’t try and rationalise it any more. It happened, it can’t be undone.

Secondly, I was even more dismayed – and deeply hurt – to hear someone I considered an ally accusing me personally and people I like of doing ‘things’. These things were never quantified and were never illustrated. I (we) were just supposed to accept they had happened.

I don’t operate like that. I do plenty of accusing on this blog. But I _back it up_ – and if I can’t back it up then I retract it. That’s how the world works. Nobody – under any circumstances – should be free to accuse anyone else of anything unless they can provide some evidence. Without that, we descend into anarchy.

Even more hurtful was to hear friends of the accuser wandering from blog to blog essentially saying ‘So? So you were accused of something – what’s the big deal?’ The big deal is integrity, respect, truthfulness. These things matter. Or at least, they matter to me.

A sideshoot of that issue was the same people saying ‘yeah, but underneath all the bluster, he has a point’. I cannot possibly convey to you how unbelievably frustrating it is to try and explain time after time that the underlying point – nothing about us without us – was never in question. Nobody thought otherwise. I was asking for the _specific examples_ of the allegations made against me and the Hub membership at large. Hijacking, usurping agendas, taking over.

This _is_ a big deal. To me, as someone who has spent the last 3 years invested in listening to autistic people regarding the autistic experience and trying to _support_ the agenda in one of the only ways I know how – technically – to hear that dismissed – _without any foundation whatsoever_ was like a kick in the teeth. That it should come from people that I deeply respected and who’s opinions I valued was the worst thing of all.

Thirdly, the vaccine connection. If anybody truly thinks that the vaccine/autism bullshit is anything other than the most important issue facing autism and autistic people right now then they need to pull their heads out the sand.

Right now, this week, a trial will begin that will effectively determine whether vaccines can legally cause autism. The outcome can potentially change the way the whole world views autism. The quacks lose and we can scale back a bit and move focus elsewhere. The quacks win….well, what happens then? Who knows, because as far as autism goes, all bets will be off.

Are you autistic? You’ll be considered first and foremost vaccine-injured. If you refuse treatment – what then? Will your ‘diversity’ be respected? Or will you be the new schizophrenics? Condemned to be held down and chelated much as schizophrenics were once held down and given ECT. Will you still be eligible for the help you get? Housing? Social? Monetary benefits…do you think you’ll still get them?

How about those autistic people who work? Think you’ll still have your employment rights? Would you be a ‘better’ employee for the company as autistic or chelated?

Are you the parent of an autistic child? Children who’s parents refuse treatment can be legally forced to surrender their paternal rights so doctors can apply that treatment. At the moment chelation for autism is seen as quackery. If this legal case goes through – who knows?

This happening right now.

Which brings me on to the concept of leadership. If autistic people alone want to not only lead and set the agenda but also decide what is acceptable for others to blog/talk about then they need to be exceptional leaders.

Leaders inspire, support their ‘troops’ and lead by example. They take responsibility. I haven’t seen much of that from certain autistic people of late. Indeed, when a leader is short sighted enough to think that its OK to ignore the vaccine issue then we are all – leaders and followers – in trouble.

If ever the autistic community needed leadership and vision in the face of a real, tangible threat then it is right now. This week.

I wish I could share with this (so far imaginary) leadership the emails I have received from parents this last week. If I could then I would tell my leaders that a good sized portion of their troops were now disillusioned and feel like they have been sold a bill of goods regarding neurodiversity. I feel a bit like that myself. Here is a quote from a parent (I was given permission to use this) who also happens to be ‘ND’:

All our voices are important. Even that of those who are less tolerant, as long as they can back up their thoughts and feelings with solid foundations, not walls that only bounce back reverberations of the original thought. I am afraid that some of our fellow ND associates have completely forgotten what the D stands for, and that truly bothers me.

It bothers me too. As someone else who is not NT but not autistic (e.g. – neurodiverse) I also think there are some people in the autism community who have forgotten that autism is a subset of neurodiversity, not its definition. They also seem to think that – as my email correspondent points out – ‘diversity’ = ‘autism only’. The people who originally taught me about awareness, disability rights etc continue to teach me but this time the lessons are not so pleasant and smack more of exclusion and not belonging to a ‘boys club’ than they do of diversity.

I got into this originally due to my daughter and that remains the overriding reason I participate. The idea of neurodiversity – that people with _a variety_ of differences – appealed to me instantly and still does. I don’t want to lead that community but I do want to participate – have my say – on how its agenda is set. I urge every parent of every autistic child, physically ND or not, to have their say too. I would temper that with reminding you that neurodiversity does not equate to autism and that as far as autism goes, you should have your say but never exclude autistic people – and be prepared for the weight of opinion to go against yours.

The saddest thing about all this is that I never thought that reminder was necessary based on our collective behaviour. The trap I fell into – until shown the nature of the trap by my big sister – is that not all autistic people do not want to hear your voices. The majority appreciate that you have something to add but they also know that they are (to borrow Kassiane’s phrase) QbE – Qualified by Experience – and that experience carries a large amount of weight.

In my next post I want to talk more about neurodiversity and how it encompasses – as oppose to ‘is defined by’ – autism. I’ll try and talk some more about my own ND neurology and why I am uneasy about how that neurology is viewed by some in the autistic community.

Downtime

4 Jun

To say I’m disappointed and angry is an understatement. I’m going offline from all things autism for a few days. I still have no idea about what neurodiversity is to me anymore or my role in it.

To the untold amount of people who’ve dropped me mail regarding this issue, I sincerely thank you. Its good to know I have your support, especially the autistic mailers amongst you. It does mean a lot.

There’s a lot going on ‘behind the scenes’ right now as well that is saddening to me and some of that is neurobigotry and ableism towards people such as myself. This has hurt me a great deal and I need to get away from that too.

So, my email acct is suspended temporarily and I’m going to just vanish for awhile (few days, week, not sure). When I come back I’ll hopefully have a better idea about how (if at all) I want to participate in neurodiversity and a better idea of what I want to do (if anything) with the Hub.

Nothing is decided here

3 Jun

I’ve done a lot of thinking over the last couple of days. I’m trying to get my head around the events and make some kind of sense out of them before I make any decisions on my own future association with neurodiversity and in particular the Hub.

I’ve read and re-read a lot of the threads and comments that preceded and also followed mine and I have come to a few conclusions that have not made me happy in any way but I intend to speak my mind.

The first conclusion that I have come to is that Larry is a pseudo intellectual poseur. I’ve looked carefully at what he has written both now and in the past and applied his own criteria to his words and actions. I find him duplicitous – dishonest and narcissistic.

This does matter. Larry makes some strong allegations. It is these allegations and his subsequent behaviour that led me to my conclusions about him.

A prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me thusly:

…the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it. Scientists are a small cog in a much larger machine and the media is where the battlefield lies. NT’s are not the heroes in this battle either.

I was very puzzled by these words as the post Larry was referencing made no claim that the science of autism was ‘the battle’. I also found his comment that ‘NT’s are not the heroes in this battle either’ bizarre as I don’t think I’d even brought neurology into the post. Larry had built himself a couple of strawmen which he could make himself look clever with by taking down. This was just needless narcissism.

Next, Larry made a post on his own blog in which he states:

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

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

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

I tried to engage Larry on his blog about why I believed he was right and wrong (something I still believe). He is right that there should be ‘nothing about them without them’. He then infers that there is a problem associated with this statement originating from some parent blogs in the Hub. He then goes on to expand on his comment on my blog about how vaccines/mercury/science is not the main fight. He closes by saying that ‘the message’ should come from ‘us’ not ‘them’ (parents).

All of this was couched in Larry’s usual pontificating prose style. At no point did Larry ever mention any specific examples of these parent blogs he was so concerned about. He makes no explanation or examples of blogs in the Hub that abuse the notion of ‘nothing about us without us’.

I was concerned about this enough to want to write my own blog entry about it and try and get as many views as possible, particularly from autistic people.

During the course of the comments I read some of the statements Larry had made on Steve’s blog – a harmless enough post Steve had made promoting a few of the things going on. This was Larry’s first comment:

I happen to believe in the promotion of the case of autism from an autistic viewpoint contra mundum and in spite of everybody. This is Cosa Nostra, our thing, autism advocacy will only ever be advanced by ourselves speaking for ourselves and so I don’t go a bundle on NT’s even if they are on our side, being promoted to hero status.

Again, Larry seems to be building strawmen for himself to knock down. No where in Steve’s post did he advance an opinion that promoting the case of autism should _not_ be made primarily by autistic people. Nowhere did Steve refer to anyone as a hero.

I left that whole post taken aback by the use of the phrase ‘cosa nostra, our thing’. It seemed to me that Larry was claiming that Neurodiversity was solely the province of autistic people. This opinion was reinforced when Larry followed up his first comment on Steve’s blog with this:

Your blog which I have commented on talks about parents, it seems to me that neurodiversity has been hijacked.

Now I was genuinely alarmed. Firstly by the thought that autistic people might think that parents on the Hub was hijacking the issue of neurodiversity but even more so by Larry’s obvious and growing inference that neurodiversity was strictly something to do with autistic people and no one else.

That bothered me a lot. It is most certainly not what I thought neurodiversity was and most certainly not how I had had neurodiversity explained to me.

It was at this point that I first began to suspect that there was considerably less to Larry than I had ever thought. However, I asked in my next comment if autistic people would tell me their thoughts. They were pretty much in line with my thinking. Four commenters who are autistic essentially said that autistic people should lead but they were very happy with how the Hub worked.

So now I was perplexed. What was _really_ going on here?

Larry’s next few comments were about his personal history with the disability movement and how it evolved. They seemed to be an exercise in meaningless verbiage.

I still had no idea why Larry felt that neurodiversity was solely something that belonged to autistic people or what specific thing(s) had happened to make him think parents were taking over the agenda. The opinions of the other autistic people who had posted seemed to reflect my bewilderment. In short, everybody agreed – as they always had – that the agenda of autism advocacy should be set by autistic people.

Larry’s next comment simply added to the strawmen.

What is worrying is when the outside world, the press will seek out non autistic representatives of this blog world to represent what neurodiversity is about.

The autism hub is not the be all and the end all of neurodiversity anymore than the aut-advo list is the sum total of autistic self advocacy.

Again, it is clear from the first quote that Larry firmly believes that neurodiversity is the sole province of autistic people. His second quote is a total strawman – who ever claimed that the Hub was the be all and end all of neurodiversity?

By this point I was getting frustrated and increasingly annoyed at Larry’s evasion. His further comments only served to increase that annoyance:

As far as neurodiversity not being an autistic only thing, that is a comment I have been making for sometime with my dyslexic hat on.

This is at direct odds with Larry’s previous statements such as : _”What is worrying is when the outside world, the press will seek out *non autistic representatives of this blog world to represent what neurodiversity is about*.”_

It was becoming increasingly clear to me that Larry was being evasive and dishonest when representing his own opinions. I had made the point numerous times by this time that Larry was failing to take into account the fact that neurodiversity was _not_ solely about autism, that there were lots of other ways of not being NT and also that there were plenty of bloggers on the Hub that were both autistic _and_ parents.

All in all, I asked Larry about eight times to provide examples of what he was talking about e.g. where bloggers on the Hub that he knew were definitely NT were trying to wrest the agenda away from autistic people. He never did.

There was plenty more bloviating passages of prose about the history of the disability movement but that was about it. There was – after I pinned him down – an admission that:

neurodiversity does not belong exclusively to autistics it is an evolving culture

Which was a great relief to hear.

However, I’d reached a pretty firm conclusion by this time on what Larry’s motivations were based on his words and deeds. He is an attention seeker who is annoyed that he isn’t the story. Throughout this entire episode he has made accusations that he is unable to backup, he has switched positions when exposed in his illogic and has demonstrated a nasty tendency to turn neurodiversity into The Larry Arnold Show.

The final straw for me was when he told me that the work that some of us had done with mercury/vaccines was actually misrepresenting autistic people and/or neurodiversity.

Since than I have been inundated with email, primarily from autistic people, telling me that my suspicions are correct. Larry like to ensure that Larry is the show. These are people who have known Larry online I’ve also heard from one person that Larry comes from a philosophical perspective that likes to blow things up and then see whats still standing to work with. That isn’t a philosophical perspective, thats just stupid.

Lets boil down Larry’s actions and words into a nutshell. He invented a problem and then couldn’t back up his claims. The guiding principles of the Hub are laid out on its homepage. If Larry or anyone else can show me where there is a growing cadre of parents abusing those ideals then we can act. Until then, the only issue is how Larry deals with his tendency to overblow nothings into somethings in order to bask in the attention.

Think I’m being too harsh? Well, I’m just emulating Larry and trying his trick of pretending everything is a pseudo-intellectual exercise in destructive philosophy.

Larry once said:

As for what people consider people to be, the evidence is in the actions not the protestations of innocence.

Which I’m guessing is his way of saying ‘actions speak louder than words’.

This parent blogged about the Judge Rotenberg Center.
This parent blogged every time an autistic child was murdered.
This parent blogged when quacks abused autistic people.
This parent blogged when autism was misrepresented in the media.

Those were this parents actions. I’m not sure what Larry’s were.

NT Parents cannot be leaders when it comes to autism advocacy. Did they ever want to be? Were they trying to be? No. I’ve seen nothing that would indicate they were.

The events of the last few days will have an impact. This was played out – and will continue to be so played out – against the backdrop of the web. The web was the enabler that brought autistic people and the parents of autistic people together. As this plays out, the web will record everything. Parents who ‘found’ neurodiversity via the web will find this too.

Right now we stand at a crossroads of opportunity. Right. Now.

Autistic people have had a horrendous time in the past. I know as much from reading the emails and blogs of those who survived it. They have been let down by parent organisations time and again.

But that was the past. At some point autistic people who do not trust parents are going to have to start. We are not those same people who let you down. We came to autism advocacy via the words of autistic people. We did not come via parent led organisations. You call the shots. We get it. Continually harping on what parents have done to you in the past is pointless in this respect. A non-autistic parent being interviewed about a website he created is not a threat to you or your autonomy. Please stop living in the past and try to see the opportunity of right now. Again, we do not want to lead you, we want to support you.

What do you want? An opportunity to wield the power of both autistic and non-autistic people? Or do you want to carry on putting your hands over your eyes, ears and mouths and reminiscing about ‘the bad old days’? Has it really got so bad that now you actually have the opportunity to use this power that you have to invent factions where none exist in order to escape the responsibility of using it? Now that you are very close to getting what you say you’ve always wanted from parents are you worried about accepting the mantle?

Parents are not perfect. We are much newer to this than you. Even those of us who, like me, are not NT but are not autistic either, and who have fought our own battles through the decades are not spat out of an allies-factory somewhere, ready made with all the right answers and actions. We *will* screw up. We *will* get it wrong. We need you to guide us in these times. If you want to lead, then act like leaders.

And the last thing we need is vainglorious challenges to our non-existent actions when you are unable to point out exactly what it is we’ve apparently done. This world we cohabit in is difficult enough without having phantoms to fight.

I would also urge some of you autistic people to be very careful of your own neurobigotry. One person has said that my actions are a total overreaction. Maybe. However, my own neurology makes this impossible for me to avoid sometimes. Would this person be happy with me if I said that their actions were totally antisocial? Or if I said that their inability to perceive a differing neurology indicates their lack of theory of mind? Or would I be accused of ableism? This person also said I should make every effort to separate the message from the personalities involved. I have. My neurological make up makes that very, very difficult to do but if I want to try and pass as normal I can sometimes do it. However, I was surprised to hear such encouragement to assume normalcy from someone I always considered a strong advocate for being who you are at all times.

This entry will solve nothing. Its not intended to. Its merely me letting off steam. I still have no idea about what neurodiversity is anymore or my role (if any) in that movement. I still have no idea what to do with the Hub. However people can rest assured Larry will have no role in deciding its future.

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