Archive | 2006

Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

Grandmas

29 Sep

I spoke recently about Grandad’s and how Nat’s Grandad, Katie’s Grandad and Megan’s Grandad all helped their kids and their grandkids just through being there and accepting. Grandads bring calm and perspective.

What about Grandmas?

Its no exaggeration to say that without Naomi’s mum we would’ve been sunk a long time ago. In so many ways she has helped us and therefore helped Meg. She was calm when we were stressed. She brought food when our freezer broke, she used to pick me up from work sometimes. She comes over at least two or three times a week to help Naomi educate Meg and look after Tabby. All day. Not just for an hour or so.

Whenever she goes shopping she buys presents for the girls. Just a little something so that they know she’s thinking of them and indirectly that we know she’s thinking of them too. When we went through our bad period with Megan’s school last year she was there to listen. She made sure we knew she was outraged on our behalf. She understands exactly when the right time to approach Meg is and when the right time to leave her alone is. When Meg was diagnosed she kept reminding us in silent ways that Megan was who she was. She bought her nice clothes. She bought her toys that she knew Megan would like (toys that spun mostly;o) ) and always treasured and valued her. Long before we came to terms with the fact Megan was autistic and that that wasn’t a bad thing, her Grandma had. She reminded us that having children is not a right but a privilege but she never did it in a way that made us feel bad. She led by example.

Some people never get awards, or knighthoods or recognition and these are people who usually richly deserve that very recognition. Naomi’s mum hasn’t solved world hunger or absolved the debt of developing nations or found a cure for cancer but she is a hero to us. I said once of Mike McCarron’s relationship with Katie and now Meg that everyone should have such a Grandad. I’d extend that to Naomi’s mum – everyone should have such a Grandma. We love her very much.

Autism Podcast Interview

28 Sep

Autism Podcast Interview

Michael from Autism Podcast interviewed me yesterday. It was the first time I’d been interviewed via Skype or trans-atlantically which was a novel experience. I was a bit concerned at how well the connection would hold up with VOIP still being a technology in its infancy but I think both Michael and I were pleasantly surprised at the quality of the voice connection.

The interview itself was very interesting and thought provoking (for me anyway) – its always good to examine (or re-examine) your own ideas and motives I think and Michael asked me some good questions on the purpose and aims of the Hub as well as asking me about Megan and how we approached raising her.

I tried to lighten my voice and flatten my local accent for US audiences (my voice is stupidly deep and Midlandsy) but I still come off as a cross between Robbie Williams and Barry White. Bah.

Also, here’s a little snippet of Meg :o)

Grandads

27 Sep

After the murder of Katie, one of the things that shone through clearest of all in news reports and in blog comments sections and most of all in my private correspondance with him was the unquestioning love and total acceptance Mike has for Katie. My family nd Mike’s have swapped pictures of each other and in one of the many of the McCarron’s we have had printed and framed is a picture of Katie sitting on Mike’s knee. The expression on Mike’s face is something to behold. It is total and utter pride and happiness. He’s looking at his beautiful granddaughter, not the camera.

Another picture Mike sent us was one of the extended McCarron clan holding up a sign with a message for Megan, their newest granddaughter, on it. The message is private, the act one of pure unquestioning acceptance and love.

Megan’s other granddad is a Captain for British Airways. A quiet, reserved, very British man he personifies the unflappable Englishman in all he does and says. His life is one of quiet pragmatism in all matters. Except when it comes to his granddaughters. For Megan he recently walked the streets of New York covering a distance of fifteen blocks searching for a toy that Amazon.com did not carry because he knew that Meg would get a lot out of it. He should’ve been resting between flights but elected to sacrifice that time for his granddaughter who he dotes on.

Today I read an entry from Susan which demonstrates once more what grandparents can do to help their children and grandchildren. The poem Susan wrote is very very good. The picture she posted of her Dad and her son exchanging a look of mutual love is pure gold.

Just Sayin: Part III

26 Sep

A film/documentary will be released in Spring 2007 about the link (ahem) between mercury and autism. After viewing the trailer I thought that possibly an examination of same of the claims made and scare-tactics used might be in order. I kept a tally of the more obvious logical fallacies as the trailer progressed.

Understanding autism

25 Sep

Understanding Autism article (917kb).

I was asked by a journalist from Action Network if I would write an account of our lives with Megan and what role autism played in our family which I was happy to do. I elected to write about our familial transition from grief to acceptance and how it had benefited Meg’s progress (and ours) tremendously.

They did a bit of judicious editing (I have a tendency to waffle on occasion) and (oddly) described this site as a ‘company’ but its a good article and I’m thankful to Action Network for giving me the opportunity to speak about my favourite subject – one of my kids – without fear of encountering a stream of abuse directed towards her.

Autism and thimerosal in France

23 Sep

France, the US and the UK have a nigh on identical prevalence rate for autism, estimated on this site at around 1 in 500. It should be noted that the inaccuracy of these stats are not in question. The stated prevalence is too low. However, what’s interesting is that that _rate_ is obviously similar. 1 in 500 across the board. Its a fair assumption that the real prevalence is equally similar.

And indeed it is not _too_ dissimilar. National prevalence in the US is put at about 1 in 1,000. In France, the 2003 prevalence was placed at nearly 1.6 per 1,000. Pretty close.

The French Hidden Horde

In a European Committee of Social Rights paper an intriguing statement was made as to the population makeup of autistic people in France:

…there are approximately 100,000 persons with autism in France, of whom 25,000 [are] children and young people.

Leaving a ‘hidden horde’ of 75,000 adults. Seeing as overall prevalence is so similar, is it really beyond belief that population makeup might be equally similar? If so, why?

French Causes of Autism

Are American children ‘special’? Its already a curious anomaly that the potential thiomersal body burden of a UK child (pre 2003) was 75 ug HG and the potential thiomersal body burden of an American child was 187.5 ug Hg. And yet our autism prevalence rate is similar – possibly even higher!

Lets not forget that apparently,

So its difficult to figure out how exactly _less_ thiomersal can cause _more_ autism. Hmm.

What’s even _more_ difficult to work out is what’s happened in France.

A study published in 2003, reported on a long terms study looking at disability prevalence, including autism, from 1980 – 1991 in Isere county, France. They found the beginnings of the current French prevalence rate for autism. Between 1980 and 1991, autism prevalence was slowly moving towards the 2003 figure of 1.6 per 1,000:

Prevalence rate per 1000

1980–82 0.31
1983–85 0.28
1986–88 0.81
1989–91 0.64

So what’s odd about that? Nothing, nothing at all. Unless you want to believe thiomersal caused this increase:

this issue was not really relevant in France where until 2002, apart from two hepatitis B vaccines, all childhood vaccines were thiomersal-free

That bears repeating: *all childhood vaccines were thiomersal-free*. So here we have a situation where France is marching in lockstep with the US in terms of prevalence and yet their vaccines are thiomersal-free.

But what about those two Hep B shots? Did they do the damage?

According to the IOM the total mercury body burden from 3 Hep B shots is 37.5 ug Hg. But lets not forget that French kids had only _2_ thiomersal containing chots so we need to shave a third (12.5) from that total leaving us with a total mercury body burden for _all French children prior to 2002_ of 25 ug Hg. Three times less than UK kids and over 7 times less than US kids. Its also worth noting that if the pre-2002 french vaccination schedule was at all similar to 2005’s then the two shots were received on two separate days over a month apart, giving a maximum daily exposure of 12.5 ug Hg.

And as Healing Arts (Alternative Therapies from the Program in Integrative Medicine) says:

There is, to date, no evidence of a causal link between hepatitis B virus infection and CNS demyelinating disorders….Additional epidemiological and immunological research is ongoing or planned to further examine any association between vaccination, including hepatitis B, and CNS demyelinating disease. Altogether, evidence in favour of an increased risk following vaccination is weak and does not meet the criteria for causality.

Shades Of Grey

19 Sep

Not Mercury wrote a great post on causes, cures and definitions of autism. The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other. This makes it extremely difficult to have impartial debate.

This is especially true when one considers the medium we are attempting to debate over. I have never met _any_ of the people I consider close allies. Neither have I met _any_ of the people I consider to not be allies. We converse solely via a web interface. My job makes me painfully aware that this is not the best way to promote calm and relevant discourse.

There is also the added wrinkle that we are _all_ either autistic, the parents (or close family members) of autistic people, or people who work with autistic people. Or all, or some. This introduces an emotional component that is also unavoidable.

Leaving aside all thoughts of evidence, autism is (depending on who you speak to):

1) Mercury poisoning, ostensibly via thiomersal.
2) Vaccine related with maybe a genetic inability to excrete mercury, primarily gained from thiomersal in vaccines.
3) Genetic with a strong possibility of vaccine involvement, notably MMR.
4) Genetic with an unknown environmental ‘trigger/s’ which could include mercury.
5) Genetic with an unknown environmental ‘trigger/s’ but which currently is not indicated to be vaccine related.
6) Genetic.

That’s grossly simplifying the issues, I know that, but we have to start somewhere.

To me, options 1 and 6 are total non-starters. There’s no evidence to support these viewpoints and lots of evidence (academic and anecdotal if that’s your thing) to refute them. Also, to me, from a viewpoint of being a valid route of investigation, all other options are on the table. That is *not* to say I agree with some of them as theories, clearly I do not. I’m saying they have the potential to be correct. This is where the weight of evidence comes into play and we all make our choices depending on what speaks to us individually. I want to stay away from that evidence in this post. I want to try and focus on how our definitions influence our choices.

If we see autism as primarily an acquired thing which negatively affects people as a consequence of that acquisition then that colours our choices. We would want to remove the autism. Likewise, if we see autism as something that people _have_ but can be both negative as well as positive then that also colours our choices. We might want to remove the autism and accept the cost of losing the positives. Again, if we see autism as something that simply _is_ that has both negatives and positives then we may wish to retain the autism and try and work on the negative aspects.

So to me, the answer to Not Mercury’s post, is at its crux, the difference between something someone _has_ and who someone _is_. And how we arrive at that decision all originates from how we define autism. Advocacy undertaken by autistic people and their allies draws comparisons between gender, racial and sexual emancipation and their own neurology. Advocacy undertaken by non-autistic people and their allies paint autism as something medical to be defeated.

Having autism versus being autistic. Does it have to be an impasse?

It would seem that it does if we carry on in the same pattens. However, as long as we do this then ‘versus’ will carry on being the modus operandi of this debate.

Would it be an acceptable compromise to accept that _autism_ is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc and that _autistic_ is a word used to describe these very same people but is used to refer to who they are and _how_ they are?

We cannot escape that fact that the nature of autism often encompasses disabling comorbidities. But likewise we should not ignore the fact that autistic people have innate strengths and abilities that non-autistic people simply do not. Is it too much to ask that – *regardless of how someone came to be autistic* both these facts need to be addressed and accepted.

If someone is autistic because they are poisoned from a vaccine we still need to be very very careful regarding terminology. The fact that they are who they are is still worthy of respect and rights. If someone is autistic because of their genetic predisposition to autism and trigger X caused that potential to become fulfilled, then that reality is still worthy of respect and rights.

My video ‘Poison‘ caught some flack from people determined not to understand it. They said I was bashing the subjects. That I was taking them out of context. I was not. I did not.

However, someone else said I was taking them in the wrong spirit. That’s closer to the mark. That was intentional. Let me explain.

We cannot even agree on a definition of autism. Let alone decide how to approach treating ‘it’ (as a single entity). Hell, we haven’t even come close to knowing whether it is a single thing (doubtful). There are people on that video using some very strong, very ambiguous language. These are people who have made a point of going on TV, writing in newspapers, being interviewed on radio programs, speaking at conferences using this ambiguous language.

Not Mercury says, and I agree, that one of the things that is harmful and distasteful at the moment is people using language to imply something (and that something.s consequences) are well defined and well understood. They are not. As long as people keep giving people who are largely ignorant about autism the idea that they _are_ then ignorance flourishes amongst the people who need to understand autism the most – the people we want to accept us and our children. My child and my friends should not be demonised to further someone’s political points.

So one of the points (particularly to do with Boyd Haley, Brad Handley and Dr Geier) of the video was to hold up a mirror to the way in which ambiguous language can be used to further ignorance and bad feeling. Its become a Hollywood cliché but the saying that:

With great power comes great responsibility.

should be never more true when we consider using poorly chosen, stigmatising words to describe people. Kathleen’s petition regarding Boyd Haley’s poor choice of words is a case in point. I like to think my petition regarding Autism Speaks poor presentation and supporting justifications is also a case in point. Certainly the 800+ signatures Kathleen has received so far and the 500+ I have received bear testament that there are a lot of people out there who are very very tired of these dangerous words (Kristina calls them ‘fighting words‘) and the people who want to carry on using them to describe people.

This is not nit-picking or hair-splitting. Words have a power. Take the Pope’s recent little slip up. Did he mean to insult the nation of Islam? Almost certainly not. But he did. The reason he did is because words matter. The words chosen by Rick Rollens, Brad Handley and Boyd Haley are unbecoming of people who want to think of themselves as people concerned with helping autistic people. As I’m trying to illustrate, autism is more than a collection of medical comorbidities. Is there anyone who doesn’t think so? And if that’s true, as it surely is, then failing to use words that convey dignity, or at least using words that demean – regardless of intent – does the wider idea of advocacy no good at all. Our children and our friends are not helped by this state of affairs. We must do better.

A little perspective

18 Sep

Parental beliefs about autism.

A study published this year looked at parental beliefs regarding the;

etiology, diagnosis, and treatment of autism spectrum disorders.

It found some interesting stuff that not only turned a spotlight on the beliefs of parents but also gave a little perspective to the ‘thiomersal/vaccine’ believers and the prominence (or otherwise) of their role in the wider community. It was also interesting to me as just over a year ago, I reported on a study that looked at the type of treatments parents used in connection with their autistic kids.

In that survey, detoxification (including chelation) was the least used treatment coming in bottom across groups of treatment and groups of autism ‘severity’ (as judged by the researchers). I was interested to see how things had changed after a year or so.

In this survey, 26% of parents believed there was a specific cause or contribution to their child’s autism. 45% answered ‘maybe’. That’s a frustrating example of a poor question. ‘Cause’ and ‘contribution’ are two very different things. It would’ve been better if the research team had separated those options. But that’s what we have.

In terms of those causes, vaccines and genetic predisposition stand almost neck and neck at 29% and 26% respectively. Other options included mother and/or child environmental insult, pregnancy complication, antibiotic taken by child, other medication and prem birth. Me? I’m with the 29% who obviously answered ‘I don’t know’. I’m not aware of anyone who thinks autism is strictly and only genetic and as we know the people who believe autism is strictly and solely vaccines are kooks like the John Best’s of this world. As far as I can see, the twin studies quite clearly demonstrate that genes _and_ environment play a part. Anyone who believes its definitely one or the other needs to clear their head and think again.

87% of parents reported having used a CAM (complimentary/alternative medicine) based therapy with the average number of treatments tried being 6.

This is the most interesting (to me) part of the survey. It’s like a look at the Spectrum of Biomed and based upon it I’m going to start classifying biomed based beliefs where Bio(Dtx) – which refers to the detox parents – is the most severe form of biomed and Bio(Diet) -which refers to parents who stop with GFCF etc – is the least severe. I really suggest you download this whole file and read the table on page 6.

First up we have the Bio(Diet). This is simply stuff like GFCF or other restricted diets. I can’t see what the issue with this is at all. I also can’t see how its an autism treatment particularly. Most kids would probably benefit from a reduction in carbs or sugars. My daughter has Aspartame banned from her diet. Not because we believe there’s a Illuminati plot to control the world via sweeteners but because it gives her headaches and makes her go hyper. I’m not keen on it myself.

However, we need to be clear – the efficacy of these diets is not in question (to me). What _is_ questionable is calling it an _autism_ treatment.

After that we have what I’m going to categorise Bio(supps). This is edging very slightly into woo territory now. Some of the stuff is probably useless but also non-dangerous (extra Zinc, Folic Acid etc). It may improve health, but does it ‘improve’ autism? I don’t see how. Also, the option ‘megadose vitamins’ is in this category and that treatment has been known to hospitalise autistic kids on at least one occasion.

After _that_ we get into genuine woo in a big way. This is Bio(Dtx) and encompasses the detox options like chelation as well as things like AIT and Homoeopathy as well as things I’d consider ‘nice’ but not ‘treatment’ such as music and dance therapy and swimming with dolphins.

Lastly, there are the Bio(meds) people. These are the people who use Neuroleptics and anti-depressants. Not sure we can call this woo as such but its definitely questionable as to merit.

Across those four groupings, the Bio(Dtx) crowd were in shortest supply. This was very reassuring to me. It gave me some perspective about how well represented this particular group were in the wider autism (not autistic) community.

They’re small. Things haven’t noticeably changed in a year. They still make up the smallest percentage of Biomed parents (chelation users stand at 13%, less than AIT users). Its a much smaller group than last years survey (77 vs 500) but last year chelation users stood at just under 8%. They’ve progressed by 5% in a year if we discount the influence of a such smaller population.

Because I tackle these people head on, there’s sometimes a tendency to think of them as having more influence than they actually do and them being in greater numbers than they actually are. Studies like this offer some perspective as to the real size of these organisations populations.

That is _not_ to say we in the more sceptical community should ignore them – not at all, they are dangerous zealots with a penchant for absolutism which must be constantly countered – but maybe we should remember that their influence is not as great as they like to think it is.

This paper also has some interesting things to say about the role of physicians in diagnosing autism. This is beyond my remit but I would like to see Orac or NHS Blog Doc taking them on. Especially the parts suggesting doctors should accommodate altie therapies.

In My Unending Quest

15 Sep

To turn the web purple (must be a phase) I’d like to introduce you to my latest redesign. Lets face it, the site needed it. It was getting just a tad ramshackle around the edges.

Where the old design was heavy on colour, this goes back to my more minimalist roots. I’ve ditched SIFR in place of dynamically generating images for headings on the server. I’ve made sure shorter blog entries don’t look like crap, the underlying code is tighter and more robust and generally its all a bit spick and span.

The biggest change was upgrading from my creaky WordPress 1.5 admin engine to this sleek lovely WordPress 2.0 admin engine. Its a big improvement and was really the main reason this whole redesign was done. Thought I might as well tart up the whole thing.

For those of you with the new Windows Vista default font sets installed you should be seeing them. For those visiting in Firefox, Moz and Safari, things are golden. For those visiting in IE6 and 7 there are minor layout issues with the right column. Same for Opera. If this was a clients site, it wouldn’t be OK to leave these things unaddressed. But its not. And frankly, I can’t be bothered :o)

Have a dig around, let me know if anything’s broken.

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