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Autism is a trait

6 Oct

Tyrin RencherDriving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, “Autism is a trait, not a debilitation.” Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: “Autism is a trait, not a debilitation.”

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin’s history and what he’s up to today (besides being a “celebrity”):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he’s a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

“A lot of the stuff I planned is coming true and I’m speechless that it is all happening,” he said. “I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)”

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

“Without them, I would be lost,” he said. “I really wouldn’t be in a position to go to college right now.”

He is learning to live on his own for the first time, something that he sometimes finds difficult.

“But I’m learning, it’s tough, but I’m trying to adjust to living on my own,” Rencher said. “One of the things my family has taught me is perseverance, and I do that every day.”

I love to see “good news” stories about autism, and this is one of the “goodest” I’ve seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person’s dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

Dore pwned in medical journal: expensive and unproven ‘cure’

29 Sep

The Dore programme is an interesting ‘cure’ for all kinds of things: as Dorothy Bishop puts it, “Dore Achievement Centres are springing up world-wide with a mission to cure cerebellar developmental delay, thought to be the cause of dyslexia, attention-deficit hyperactivity disorder, dyspraxia and Asperger’s syndrome. Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development.” Sound great, doesn’t it. Except, as Bishop shows in a new journal article, this is not supported by good evidence and it is therefore the case that “the claims made for this expensive treatment are misleading”. While academic journals are normally pretty restrained, this is about as close as I’ve seen to a thoroughgoing fisking in a journal article: Dore, and their research, are really pwned here. Given that – according to Ben Goldacre in the Guardian – a course of Dore treatment costs around £1,700 (and takes a load of time) I’d want much better evidence of efficacy before splashing out.

Dore is certainly well-promoted. Google “Asperger’s Syndrome” and it brings up an advert for Dore’s “Proven Long Term Drug-Free Solution Relieving the Symptoms of Aspergers”. Google “dyspraxia” and an advert informs one about Dore offering a “Proven Long Term Drug-Free Solution Relieving the Symptoms of Dyspraxia”. Google “dyslexia” and an advert promotes Dore as a “Proven Drug-Free, Exercise Based Dyslexia Remedy”. As a slick Dore promotional DVD puts it: “Now Dore Centres are able to offer real hope to those in despair” due to suffering from ‘learning disorders’. This includes Asperger’s Syndrome, which Dore’s UK site describes as “a problem associated with poor social behaviour.” Dore is apparently “suitable for those with high functioning Asperger’s Syndrome and Autism” (are any alternative treatments nowadays not marketed as suitable for people on the autistic spectrum?).

This marketing might make Dore seem appealing. Bishop notes that, “Although most of the promotion of the treatment is based on personal testimonials, these are backed up by research. Dore pointed to a study showing that treatment led to a nearly fivefold improvement in comprehension, a threefold improvement in reading age, and a 17-fold improvement in writing.” Sounds good, right? But the quality of the research was pretty dismal. Among other problems, while the research did include a control group

there were no data corresponding to a time when the treatment group had had intervention and the control group had not – because the control group had embarked on treatment at the end of the first phase. Accordingly, the authors presented the data only from the treated group.

‘Oops’, is all I can say…Bishop puts it more eloquently, making clear that “The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.” I wonder how the researchers justified this poor control to Dyslexia – maybe the good old excuse that ‘the dog ate my control group’?

This might sound bad for Dore, but that’s not the half of it – Bishop also takes apart Dore’s posited mechanism of action:

The gaping hole in the rationale for the Dore Programme is a lack of evidence that training on motor-coordination can have any influence on higher-level skills mediated by the cerebellum. If training eye–hand co-ordination, motor skill and balance caused generalised cerebellar development, then one should find a low rate of dyslexia and ADHD in children who are good at skateboarding, gymnastics or juggling. Yet several of the celebrity endorsements of the Dore programme come from professional sports people.

So, aside from lacking a plausible mechanism of action, and lacking good evidence of efficacy, Dore seems like a great idea. If that leaves anyone rushing to get out their cheque book, Bishop kicks the dead horse a few more times. It’s therefore also worth quoting Bishop’s key points about the Dore treatment:

1 The treatment offered by Dore Achievement Centres is being promoted as a “drug free” alternative to conventional treatment for ADHD, and as a ‘miracle cure’ for dyslexia. It is presented as having a neurological rationale and gains credibility by appearing to be medical treatment.
2 The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.
3 The research purporting to show efficacy of the treatment does not show sustained gains in literacy scores in treated vs. control children. Furthermore, the intervention has not been evaluated on the clinical groups for which it is recommended.

Ouch. If only more articles in science journals were like this – clear, well-written, and brutal in a rather entertaining way – they’d make much better weekend reading…

Sick of the Dehumanising

28 Sep

I am utterly sick of Jenny McCarthy and the TACA urges to autism Yahoo groups members to bombard radio/TV stations where she is appearing with pictures of kids, telling them to tell the TV stations there kids are ‘recovered’ whether they are or not:

More help is needed to show the cynical world children with autism ARE getting better. They ARE recovering!. If you have a recovered
child or a child that is near recovered, has benefited HUGELY from biomedical intervention please read and consider the following.

WE NEED RECOVERED KIDS – families need to send in their stories and pictures of their recovered child or children. What is needed – Before and After pictures for kids who recovered from autism. (IT IS IMPORTANT TO SAY: I give permission for these photographs to be on air with Larry King 9/26/07 – include parents name & phone numbers with the childs first name only to appear.)

See? Doesn’t matter if your child actually _is_ recovered – or even recover _ing_ – just being a biomed user is enough to ‘prove’ recovery according to Julia Berle. The media spin is sickening. The attempt to utterly mislead people is sickening.

I am also utterly sick of hearing SafeMinds, the NAA, A-Champ and all those other soccer mom, white, upper-middle class me-me’s having the gall to say that a study that makes it clear in its abstract that it has nothing to do with autism is misleading the public about autism. This coming from groups who have incited violence against honest scientists and who have blatantly lied about these same scientists affiliations – with no apology or retraction – and who have paid journalists to write nonsensical, non-scientific propaganda on their behalf.

Further, I am sick of the Sally (I’m sorry, I can’t bring myself to carry on typing that ‘look at me’ version of her first name) Bernard’s of this world who – even when invited to help design a study and who are happy to do so, don’t possess the moral fibre to stick with the study they helped design because it didn’t produce the results they wanted. And not only that, have the temerity to complain about the design of the self same study – _which they helped design without a word of complaint until it produced results opposite to her beliefs_.

Lastly, I am utterly, totally sick of the casual dehumanising of my daughter and people like her – autistic people – who are now happily being described by Jenny McCarthy’s pet quack as soulless.

Well, screw this, I’ve utterly had it. What I want to do is give Kartzinel a big loud and clear blast. And I need your help to do it. I also need the help of your friends and your friends friends.

I want to produce a video to post to YouTube which will be an utter refutation of such unbelievable crassness. I want to collect a picture of every autistic child who’s parent rejects the description Kartzinel gave for autistic children. They do not need to be named if you don’t wish to do so. They will not be identified. They will just be present. Please send me your photos to kevleitch@gmail.com. Please pass this request on to your friends. Please make sure this arsehole understands that referring to our children in this way is not acceptable.

Cultural Mitigation

14 Sep

Recently, I had a conversation on another blog with an autistic single mother who was concerned about meeting the needs of her more social child.  She wrote that there was a whole lot of social stuff she didn’t connect with, or even notice, and that having to hand her child off to other people who could do a better job of teaching the child about social expectations bothered her.

I replied that children always differ from their parents in some ways, that being able to recognize and accommodate her child’s differences meant she was a responsible parent, and that the arrangements she made for her child’s social activities were similar to a parent with no interest in sports handing off an athletic child to a coach for regular practices and games.

Another parent pointed out that raising an autistic child, when there are no other family members who are autistic, also requires a significant amount of interaction with professionals and others who may have a better understanding of the child’s needs.

She wrote that, while she appreciated the encouragement, she thought that her lack of conventional social behavior might be detrimental because her child would model her ways of interacting, without being aware that society did not accept such ways.  In this regard, she felt that her situation was unlike that of a non-autistic parent raising an autistic child.  Also, it was unlike that of a married autistic parent because, she wrote, the non-autistic parent could mitigate any detriment from the autistic parent’s social differences.

I had to agree that there was a significant cultural issue here.  When parents raise their children in a minority culture—whether we’re talking about autistic families or any other culturally distinct group—the children are likely to have a harder time learning the ways of the majority.  However, the existence of minority groups contributes to the richness of the mainstream culture.  Different perspectives, behaviors, and cultural expectations are vital to the healthy functioning of a modern democracy.

This was a hard burden to place on a child, she commented.

Yes, and it always has been hard, I thought, for all the minority groups over the years that have had to decide how much of their culture they should sacrifice for the sake of fitting in.

Why investigating Wakefield matters

1 Aug

I occasionally get emails or blog comments along the general lines of:

Why do you do this? These people [Wakefield, DAN, whomever] are trying to help autistic kids!

The (il)logic train is very simple to these people: X listened to their ideas about vaccines and autism, X tries out never-seen-before-treatments on autistic patients therefore X is a hero. When X gets examined with disdain from mainstream medicine X becomes a martyr.

There is a bizarre disconnect at work here. Somehow we have progressed from an idea that scientific enquiry adds to the general body of scientific knowledge to the idea that its just about OK to do anything to patients irrespective of what’s actually ‘wrong’ with them in order to advance a poorly supported hypothesis.

Here’s why this matters to me and why Andrew Wakefield is a prime example of all that has gone bad in the small but very vocal subset of autism parents who believe MMR/thiomersal/vaccines in general causes/triggers autism.

First and foremost is the basic injury done to the scientific objective truth. This is, I agree, an entirely abstract concept but it has implications in our every day real-world lives. Science is what brought us the nice cubes of ice in our whisky and also brought us the Nuclear bomb. Whatever we personally think of these results, science has prevailed in both cases. The _truth_ has prevailed.

The people I and others refer to as the Mercury Militia (referring to the anti-vaccine/autism/parent activists) are not interested in the truth. This is not an opinion, it simply is. From the National Autism Associations deliberate and outright lies about what science has revealed about autism, to their supporters attempts to silence the debate via threats of violence and encompassing Lenny Schafer’s admission that there is not enough science to support the idea of a vaccine hypthesis and their only chance of ‘winning’ is via a legal route with vastly lower standards of evidentiray proof as well as David Kirby’s refusal to fess up to the terms of the hypothesis he himself set.

What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs.

As far as scientific objectivity and a search for the _actual_ truth is concerned – forget it. This is a set of people who are simply uninterested. If a story/hypothesis emerges that doesn’t embrace vaccines as causative agents then they will attack it. And what they will attack it with is mostly lies.

I have a question for them and people who believe and trust them – and I know they read this blog. The question is this: how good do you think the quality of any information/data is that emerges from the mouths of people who lie, evade and threaten? How good do you think the science is that originates from people who plagiarise other peoples work? How accurate do you think advocacy groups that lie to the media about what they believe are?

At some point there has to be a time when even self-denial cannot support these people. As we have seen, recent attempts to coerce the media have resulted in humiliating climbdown after climbdown. How far can denial continue to power the majority of the new soccer-mom, middle-class powered anti-vaccine movement of the naughty noughties?

Let’s take an example that touches on the title of this blog – Andrew Wakefield. His hypothesis regarding MMR and autism was discussed at length during the recent Autism Omnibus hearings (Cedillo, June 2007).

Andrew Wakefield is seen as a pretty much a demigod amongst the Mercury Militia. His word is taken on pure faith. Why? Because he agrees with certain parents that the MMR jab caused/triggered their child’s autism. The basic hypothesis is as follows:

1) Child is injected with MMR
2) Measles virus (MV) travels to gut causing various gastro issues
3) MV carries on travelling to the brain causing autism symptoms

ergo – MMR causes autism with associated gastro issues.

The whole hypothesis stands or falls on finding vaccine strain MV in the guts of autistic children. Wakefield (and others) claim they have. However, the facts tell a different story.

Wakefield (and all others) used a technique called PCR to ‘find’ MV in their subjects. During the afore-referenced Cedillo hearing, Dr Stephen Bustin gave testimony. Bustin is possibly _the_ world expert on PCR. Not only does Bustin use PCR every day, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the A to Z of Quantitative PCR. which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences.

Basically, when it comes to PCR, the technique Wakefield (and others) used to ‘find’ MV – this is the guy.

NB – this whole section of evidence I blogged extensively, including quotes. Please read for more detail.

Bustin was first and foremost concerned that:

1) The technique that utilised PCR and employed by Wakefield (and others) was essentially useless. No controls were used. This is a serious scientific omission and makes comparing the data accurately impossible.
2) The technique failed to outline procedures for dealing with contamination of data
3) There were mismatched and misrepresented data designs

These items raise very grave questions over the _methodology_ used. The next set of concerns reveal the full extent of the scientific shambles of the entire MMR/autism industry.

This is a vital point to understand before we discuss these things. It is vital that we remember that, aside from one unpublished poster presentation (Walker 2006), _all_ , I repeat _all_ science that has claimed to find vaccine strain MV in the guts of autistic patients used the same lab to get its results – Unigentics, the lab of Professor John O’Leary. It is also vital to remember that Stephen Bustin did not just examine for afar. He spent over 1,5000 hours in the O’Leary lab before coming to his conclusions.

His conclusions were devastating.

1) The O’Leary lab had failed to take necessary steps. This omission made it impossible they were detecting MV.
2) The O’Leary lab was contaminated.
3) It was the contamination that O’Leary’s lab was detecting, not MV. Its worth quoting Bustin at this point:

So all of this evidence suggests very, very strongly that what they are detecting is DNA and not RNA. Because measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus RNA. They are detecting a contaminant.

It cannot be any clearer. According to the the man who is the recognised world expert on the technique that *all published science claiming to find MV in the guts of autistic kids* lab utilised, it is simply not possible that this lab could’ve detected MV. Without MV, there is no MMR/autism hypothesis.

And what is the response of Wakefield’s supporters to all this? I will quote John Stone, who fancies himself the cool calm voice of the MMR branch of the autism/antivax movement. When presented with Bustin’s testimony, he said:

I do not think there is much to be gained by arguing about the contents of a test tube….

This tells us all we need to know about the levels of denial that operate in this arena. Stone resorts to saying that the Cedillo case was not settled yet, which is true. However he evades the point that Bustin’s testimony is not dependant on legal justification. It is dependant on scientific accuracy. Given that it is *documented by O’Leary’s own lab procedure* that they omitted key parts of the process necessary to establish the presence of MV, I really don’t know what else there is to say on the matter.

Secondly is the effect all this anti-vaccination rhetoric has on the health and safety of public citizens. News stories that are accumulating started circulating a year or so ago on dropping immunisation rates and rising deaths and injury from vaccine-preventable illness:

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.

Vaccine uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

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, last year, 18 months after these warnings, 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 in that last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

This is real evidence of harm. Never forget it can be traced back to a man with absolutely no evidence at all to support the science of his claims.

Thirdly is the effect all of this has on autism and autistic people like my daughter. The vaccine induced blind panic that the people behind these hypotheses and their media agents at the NAA, SafeMinds, Treating Autism and Generation Rescue have done their best to inculcate is having a toll on autistic people. Here’s a passage from an email I received a few months ago:

…when I said he was autistic, they told me I shouldn’t bring him to a school, that vaccines had made him ill and that their kids could catch that illness….after all, these women reasoned that if it [autism] could be caused by vaccines, it could be caught and passed on to other kids….

This is frightening. Autism as a condition has a lot of stigma to deal with already. The fact is that any hypothesis that has gone on now for over 10 years without any scientific support, as the vaccine/autism one has, needs to shut up and move on. No good can come of creating more stigma for no benefit.

In 2004, the BBC discussed a report from the Institute of Child Health, the National Autistic Society and the Parents’ Autism Campaign for Education that looked at the state of autism research. One of its conclusions was that:

….the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder….

This has led to a situation wherein:

…It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

So, a dwindling 8% of all autism research fundings looks into interventions. The marketing of the MMR hypothesis has meant that this pathetic 8% is all that autistic people can expect in terms of educational research, programs for adults – basically if it will have some tangible impact on the lives of autistic people then it comes out of this 8%.

This then, is the legacy of the autism/vaccine hypothesis and its supporters. Bad for the truth, bad for science, bad for public health and bad for autistic people.

Happy Birthday Katie

22 Jul

Today, Katie McCarron should be five years old. Instead, her family have to try and get through this weekend as best they can whilst coping with the unbelievably heavy burden of their loss and the unbelievably heavy burden of the trial they are being forced to go through as Katie’s killer is too cowardly to simply stick to her eleven confessions and do her time.

Remember

Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go yet turning stay.
Remember me when no more day by day
You tell me of our future that you planned:
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve:
For if the darkness and corruption leave
A vestige of the thoughts that once I had,
Better by far you should forget and smile
Than that you should remember and be sad.

~Algernon Charles Swinburne

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.

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.

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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