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Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Green our vaccines – the outreach effort

5 Jun

Whilst Team McCarrey were busy wowing the ‘hundreds‘ of people at the Green our vaccines rally yesterday, one face was notably absent from proceedings.

David Kirby was in good old Blighty, enjoying our lovely summer drizzle and grey skies.

Mr. Kirby will speak about recent legal, political and scientific developments in the United States in the ongoing vaccine-autism controversy. The briefing is open to Peers in the House of Lords, Members of Parliament, their Staff, members of the Media, and Invited Guests. It is sponsored by His Lordship Robin Hodgson, Baron Hodgson of Astley Abbotts, Shropshire.

Now, I’ll come clean. David and I had tried to arrange a meet up so we could rage amicably at each other over a huge quantity of alcohol. Unfortunately, as it so often does, life intervened and I had to cancel.

This meant I also couldn’t attend his talks.

However, I could do something. I could ask my MP to formally protest David’s presence in Parliament to brief Lords, Peers and MP’s. Truth be told I was pretty annoyed by this – why is it so easy for a journalist to swan in and command the attention of the government and opposition and yet untold hundreds of autistic people and their families never really get a look in.

My MP was agreeable and did a bit of reading up on the issues David would be talking about in his briefing so he could debate if needed as well as protesting on my behalf.

Turns out that this wasn’t strictly necessary. When my MP reported back to me this morning he told me that David was briefing an audience of one (1) MP (mine, who only attended as I asked him to) and four Lords (one of whom was David’s sponsor I would guess and his cronies). No press attended, aside from a few people/press my MP described as “….obscure journalists who have become consumed by this issue.” so I’m thinking probably oneclickgroup, JABS and various other marginal nobodies.

So, not the most auspicious of presentations. As it turns out though, something of a blessing in disguise – my MP seems quite keen on me getting the chance to present myself which would be interesting.

Unstrange Minds – UK release

5 Jun

I wrote about Unstrange Minds in 2006 when it was first published in the US only.

Cover of Unstrange Minds

It gives me huge pleasure to note that Icon Books have now released the UK version (also available on Amazon UK.

I loved Unstrange Minds unreservedly. Professor Grinker sent me a galley copy to read before it was published and I read it in a couple of weeks worth of train journeys to and from my workplace. So absorbed was I that I very nearly missed my stop more than once.

Its a book about two things. Firstly it is a Fathers paen to his autistic daughter. The love and respect he has for his daughter permeates every single page. It is clear that he finds his daughter fascinating and wonderful. Through the pages, we do too.

Secondly, it is a book about the ‘autism epidemic’ or rather the lack thereof.

The shift in how we view autism….is part of a broader set of shifts taking place in society.

Grinker goes on to take the reader through the often fascinating history of autism as a diagnostic label (Kanner is pronounced ‘connor’ – who knew??) to illustrate his theory of the apparent rise in autism prevalence being intrinsically linked to these cultural changes such as the growth in child psychology as an area of practice, the decline of psychoanalysis, the rise of advocacy organisations, greater public awareness to educational needs and change in pubic policies:

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

One of the most fascinating parts of the book for me was Grinker’s exploration of autism in non-Westernised cultures such as South Africa and Korea. In some ways it was like reading about how autism was viewed here 20 years ago.

When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.

That seems (and is) outrageous to us but 20 years ago I can easily imagine this happening in the West. One only has to look at the recent experiences of Alex Barton to see how quickly the West can regress to barbarism.

I can’t recommend this book highly enough. Go buy it now.

‘Neurodiversity’ in New York Magazine

26 May

The journalist and author Andrew Solomon (author of the truly excellent and personally recommended Noonday Demon) has written a long piece for New York Magazine entitled The New Wave of Autism Rights Activists in which he paints us a picture of the heavily fractured tripod of autism activism.

Its far, far too long for me to summarise but I will try and give a very brief overview of how Solomon sees these three groups:

There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

That is a fairly accurate picture although not without it faults (ND’s believing autism should be ‘left alone’….not sure about that – and Solomon does qualify that statement later on)

I don’t really want to talk that much about Solomon’s piece. Its very, very good overall in my opinion. What I _do_ want to talk about is my reaction to it and how my slightly changed view of what ‘neurodiversity’ means to me is.

Ever since I had a large public disagreement with certain people last year about how I and other parents on the Autism Hub allegedly advocated (this disagreement led me to ‘outing’ myself as a manic depressive, handing over ownership and control of the Autism Hub and taking time away from blogging for a week or two), I have been thinking off and on about ‘neurodiversity’ as a practical construct.

I will come clean and say that Andrew contacted me for a statement about what I thought about neurodiversity as someone both neurologically different and also parent to someone neurologically different. That I didn’t make it into the final piece is testament to his skills as a journalist and my own growing ambivalence regarding neurodiversity. I started off by saying:

I felt that I had a good handle on the meaning of neurodiversity – to me it was simple: the diversity of neurology or, to lengthen that out to a truly epic state of pedantry, the many differing states of being that could be neurologically encompassed.

and I still do think that. I also said:

…what neurodiversity was, was a concept that could be embraced by people who valued difference and respected those who were different. It didn’t matter to me that those who embraced the concept were parents or professionals or autistic people or blind people or bipolar people or any mixture of the above. The important thing was that here was a group of people who were saying that being different wasn’t bad. That it (whatever ‘it’ happened to be for you) was a state of being worthy of respect in its own right. It is vital to me that my child grows up to think of xyrself as a person who is entitled to respect.

Beyond that, I am unsure what – if any – of the other things associated with neurodiversity apply to me. I am not ‘anti-cure’. I agree with Alex Plank who states in the article:

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet.

What I want to do is raise my child to a point where xe can advocate for xyrself. If there was a cure invented tomorrow I would want xyr to able to ask the question xyrself: ‘Do I want this?’. This is because, as a parent, just as it is not my right to make xyr not autistic, it is neither my right to keep xyr autistic against xyr own wishes. I am a parent first and advocate second. Let me go even further. If a cure was discovered tomorrow I would not advocate against it. I would try and debate its use as something that should be used with extreme caution but I would not advocate against it point blank.

I come from a viewpoint that views a cure for autism as something that should not be necessary, not as something that should not exist.

What I mean by that is that I do not think it should be _necessary_ for someone who was autistic to be made not autistic in order to enjoy their life. I see plenty of autistic people clearly enjoying their lives and who they are. I want to see respect, tolerance and caring to come _first_ – not only after someone has been ‘cured’. This is (to me) at the root of the recent issue involving Alex Barton. One argument is that because Alex is autistic this is only to be expected. I disagree with that totally. I think that Alex was/is worthy of respect whatever his neurology. Its the same reason I don’t really like the heavy NT bashing that goes on at some ASD forums – two wrongs never make a right.

I also come from a belief that science is important. I therefore recognise that we cannot pick and choose what science we like and what we don’t. Science is either valid or it isn’t. So, when a scientist writes a _good_ paper that states MMR doesn’t cause autism I have to (by definition of science) agree with it. Likewise however, if a scientist writes a _good_ paper that states that Facilitated Communication is not valid, I have to accept that also. I do think that some neurodiversity activists are guilty of picking and choosing what science they like and saying its good and vilifying science that they don’t agree with. Which is fine if the criticism is valid. But not if it isn’t.

If a scientist works on a cure for autism should he be stopped? No way. To me, that’s pointless. If science is interested in a subject they’ll do it. Not always in the best interests of humanity I grant you but all the same – the debate about what to do with the results of said science are more practical than simply trying to stop it.

So, I’m not sure if I am ‘ND’ anymore. Or maybe I’ve just re-interpreted what I think being ‘ND’ means for myself. I don’t know.

Edit: Missed a bit

The closing of Andrew Solomon’s piece is a bit of a dichotomy.

Severe autism is a ghastly affliction that should be cured

I’m afraid that I entirely disagree with Andrew there. They key word is ‘should’. To me, the sentence would be more representative of my own personal definition of ‘nd’ if it read:

Is it important to cure ‘severe’ autism or look more carefully at how the rest of society operates around ‘severely’ autistic people?

.

However, it seems as though Andrew was reading my mind when he wrote:

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

Enforced Vaccination

11 May

I don’t like this, I really don’t.

I know I advocate for the undoubted and scientifically established benefits of vaccination and will continue to do so, but the news that the influential Fabian Society have recommended a policy of enforced vaccination is not good.

In an article for the Fabian Society, leading public health expert Sir Sandy Macara called for child benefit to be linked with vaccination uptake.

And Labour MP Mary Creagh said children should have to prove they are vaccinated before they start school to improve uptake of MMR.

Call for vaccine opt-out penalty

I’m all up for improving the uptake of MMR, I think that is a worthy and vital goal. But is this – educationally and financially punishing children – the right way to do it? Because make no mistake, the parents won’t particularly care that their kids are home schooled. And the type of parent who doesn’t vaccinate (wealthy, white middle class) won’t miss the child benefit. But the child at the heart of these penalties may well miss scholastic education. As a home schoolers ourselves (less through choice than lack of any other option) one of the things we are keenly aware our child misses is the company of her peers in an educational setting.

For those who don’t know, the Fabian Society is a ‘middle-left’ think tank that recommends policy to Labour Party members, particularly influential whilst we have a Labour government (as we do now). They reached this recommendation apparently after:

A poll by YouGov for the Fabian Society suggested that the public would back government action on MMR to address large rises in mumps and measles’ cases. It found that 63% of the public felt that immunisation only worked if everyone was covered, and only 31%felt if was purely up to families to make the choice.

MMR press release

YouGov are a well thought-of (in terms of results accuracy) market research agency. I’ve little doubt the figures they collected are correct. I still don’t like it though. I think that something needs to be done, but this? The penalties seem targeted to ‘hit’ the kids. It also seems tantamount to admitting that attempts to utilise the excellent, freely available science that has killed the MMR hypothesis is pointless.

I’m also frankly disturbed by this quote from Fabian review author Sir Sandy Macara:

One ought to recognise that mothers have a responsibility for ensuring their children are protected.

Mothers? Not parents?

This seems ill thought out, knee-jerk-ish and guaranteed to play into the hands of the conspiracy theorists. We need to do better – much better – than this.

Autism and Mental Illness

10 May

So, the family have been away for four days on holiday – our first ever holiday! A very, very good time was had by all 🙂

But in the meantime it seems like the Autism News Juggernaut hasn’t even slightly slowed. I came back to a deluge of emails on subjects touching on autism but one really caught my eye.

This is the story about autism being linked to mental illness:

Parents of autistic children are twice as likely to have had psychiatric illness, researchers have discovered…A child’s risk of autism was 70% greater if one parent was diagnosed with a mental illness, and twice as high as average if both parents had psychiatric disorders, according to a report in the Pediatrics journal. The finding suggests autism and psychiatric problems may sometimes have a common cause and genetic link.

I’m trying to get ahold of this paper to read for myself but its totally unsurprising to me that this should be the case. As some of you know I have manic depression (bipolar as its known in the US) for which I have been receiving treatment for approaching 30 years. I have long suspected that there is an overreaching link between many flavours of mental difference – a hypothesis, born out in the scientific work of David Porteous who has been involved in pioneering science regarding mental illness and DISC 1 mutations. Long term readers of this blog may know that DISC 1 has a high association with autism too.

Indeed, last year, David Porteous gave a fascinating talk at last years MDF Conference in which he talked about the DISC1 connection to manic depression and included ASD amongst the constellation of ‘mental disorders’ that have some kind of interrelationship.

So, this news was no surprise to me at all. Yet to some others it seemed as if it was a slap in the face. A comment from a reader who saw this item reported at CBC said:

So what is being implied here? That mental illness in parents is an indicator /cause of autism in off-spring, or autism in children causes mental illness for their parents? On behalf of parents of autistic children I feel offended by this type of garbage research…

Which is a frankly bizarre way to look at this study. The study itself seems to be saying only what is presented in its abstract.:

This large population study supports the potential for familial aggregation of psychiatric conditions that may provide leads for future investigations of heritable forms of autism.

Its step one. Nothing about _cause_ has been discussed as far as I can tell from reading the abstract. Does that make it ‘garbage research’? Hardly.

An Open Letter To The Poling’s

12 Apr

Dear Poling family,

Let me first start by saying that your little girl is beautiful. I am father to two girls (as well as one boy, young man now actually) so I know how great it is to have such wonderful little people around.

I read Jon Poling’s commentary in the AJC and I have to say that I was very disappointed by the level of accuracy in the piece. For example, he says:

On Nov. 9, 2007, HHS medical experts conceded through the Department of Justice that Hannah’s autism was triggered by nine childhood vaccinations administered when she was 19 months of age…

Now I have taken a keen interest in your families case since it became clear what the situation was. I _think_ I have read most of the newspaper reports available online as well as (more importantly) the HHS document itself and (even more importantly) the case study co-authored by Andrew Zimmerman and Jon Poling.

Nowhere, I repeat, nowhere, have I seen anyone from either the HHS, CDC, US Government, or even the Zimmerman/Poling case study say that ‘Hannah’s autism was triggered by nine childhood vaccinations’.

I have seen David Kirby refer to this several times. I have heard lots of people refer to these statements as if they are true and now I hear you doing it too.

But where is this concession?

In what legal, scientific or medical document does it state unequivocally that ‘Hannah’s autism was triggered by nine childhood vaccinations’?

You are a family on the cusp of storm. You need to take more care with your statements. People all over the world are listening. The *fact* as of right now is that no one has conceded ‘Hannah’s autism was triggered by nine childhood vaccinations’. Simply stating it as if it were true does not make it true.

The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah’s records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

Now this confuses me on two levels. Firstly, Special Masters have already said that:

….in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

It sounds to me like Dr Poling is trying to turn something around onto the HHS without justification. Maybe your legal team haven’t told you about this news. I understand they’re very busy of late.

The second part of Dr Poling’s statement that confuses me is the allusion to the records being released ‘to those representing the almost 5, 000 other autistic children’.

I thought that you wanted your documents to be made entirely public? Are you now saying you only want the legal teams of the other omnibus lawyers to have access to them?

I would also like to draw your attention to the email I sent to Terry Poling on March 5th asking why the Poling family had not cleared Dr Andrew Zimmerman from speaking publicly about the case. Does the Poling fmaily have any intention of lifting that embargo any time soon?

Dr Poling goes on:

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as “rare.” In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

This is very disingenuous Dr Poling. I am not sure if you are purposefully distorting the truth or simply not as knowledgeable as you think. In point of fact the figure of 7.2% is from a 2005 study ‘Mitochondrial dysfunction in autism spectrum disorders: a population-based study‘. This is _not_ (as you state) ‘the only population-based study of its kind’. It was in fact a precursor to a _second_ follow up study by the same lead researcher correcting his own data.

This second study (published October 2007) is called ‘Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical characterization, and medical conditions’.

This study declares a 4.1% figure. It is disingenuous in the extreme to refer to old science when newer, more accurate science exists on the subject (and by the same author no less!).

Further, as far as I can tell, the figure of 20% has but one source – a non published summary for attendees of a 2003 LADDERS conference in Boston, USA. Therefore it has not been subject to any kind of peer review. That’s not to say the figure is wrong, merely that it hasn’t been verified or undergone any kind of the usual scientific checks and balances a published piece of work must undertake to ensure quality. This is not ’emerging science’ Dr Poling. Its a set of program notes.

Further, as I understand it from talking to people involved in all three of these different items, the percentages you talk about are expressed percentages _of regressive autism only_ . Now I might have that wrong but I’m pretty sure that’s what was communicated to me.

Taking this into account, when Dr Poling states that:

In fact, mitochondrial dysfunction may be the most common medical condition associated with autism..

and he goes on to suggest population numbers between 10,000 (1%) , 72,000 (7.2%) and 200,000 (20%) of the autistic population he estimates at one million in the US, he is incorrect.

However, if I have understood what is said to me then we need to look at regressive autism numbers only, which are estimated to account for 25%-30% of autistic people. Therefore we are looking at not 7.2% or 20% (one is incorrect, one is not scientifically justified) of one million. We are actually looking at 4.1% (the only scientifically valid number) of between 25 – 30% of one million. Lets take the upper figure of 30%. This gives us a population of 300,000 for regressive autism. Applying the 4.1% estimate we can see that – at best and only if this data is all correct – mitochondrial autism may affect about 13,000 autistic people – 1.3%. If we took the lower range of 25% for regressive autism, we barely get over 1% (10,250).

Secondly, it should be noted that approximately 40% of autism can be accounted for genetically. This already makes it the single largest established cause(s).

Dr Poling goes on to say:

Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker.

This is true. However, prefacing this sentence with the word ‘today’ gives the highly misleading impression that autism has been associated with mitochondrial disorders and/or dysfunctions only since Hannah Poling came into out collective conciousness. This is far from the case. I can find instances in the scientific literature going back to 1986, over 20 years ago discussing mitochondria and autism and a PubMed search for ‘mitochondrial autism’ yields 34 quality papers published over a 20 year period. This is hardly a new thing Dr Poling.

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

I fear that this is projection. You are very close to pushing an anti-vaccine agenda Dr Poling and indeed Terry Poling was active an the Yahoo Group ‘Recovered Kids’ from at least Summer 2001 where she says things like:

Really, the only way to obliterate a disease is to vaccinate everybody – or at least so “they” say

Sept 2001.

Had I told the hospital staff she was autistic they would not have believed me. The same held true for a (sic) educational consultant who came to evaluate hannah the day before the fever started. She said in her report she saw absolutely no autistic behaviors.

Nov 2001.

She has mitochondrial disease which causes her autism.

March 2004.

I do know docs that speak for drug companies but they cover all the meds for a particular disease in their talks with other docs. If they do not agree that the drug is best for certain conditions on the whole they say so.

Feb 2003.

…it [autism] is a DSM set of symptoms. When the symptoms disappear you cannot say the child still has autism…..

Oct 2001.

So Dr Poling when you try to lay the blame for vaccine preventable injuries increasing at the foot of those agencies assigned to try and stop them reappearing I think that is farcical. To me it is clear that the main responsibility lies with those who shun what are by and large safe safe vaccines on the strength of a hypothesis that is nowhere _close_ to scientific truth. I urge you to read this article and the comments left by readers. Its clear who they see as responsible. For example:

Don’t want to vaccinate your kids? Fine with me. Just don’t send them to school where they then put my kids at risk because of your decision.

You are deluding yourself if you think you can turn responsibility for shunning vaccines back on health agencies Dr Poling.

All in all Dr and nurse Poling I think that your public use of misinformation and erroneous science to make your point will serve you no good in the long run. I also continue to be puzzled by your refusal to ‘ungag’ Andrew Zimmerman. I hope you can start to realise that what has ‘happened’ to Hannah is far from remarkable. Best wishes from one autism parent to another.

Jenny McCarthy on Larry King Live

3 Apr

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

~ Erik Nanstiel, Feb 2006

Now Erik was discussing Sigourney Weaver (the future Mrs Leitch if she ever stops stalking me) and her role in Snowcake but I thought it might serve as an interesting comparison for how another actress, Jenny McCarthy, is currently viewed.

In point of fact, I entirely agree with Erik, we _do_ place far too much importance on what acctresses and actors say. For example, on Larry King Live last night jenny McCarthy spoke quite a lot but didn’t actually _say_ much at all.

For example:

It’s a global epidemic…

Really? Where is the science that supports that position? Because there is an _awful_ lot of evidence that entirely refutes it.

I went online and I found a community called Defeat Autism Now……I believed enough — even though my pediatrician at the time said it’s all bull — and followed this treatment and my son got better

Yeah, that and all the ABA, and the Indigo/Crystal beliefs:

The day I found out I was an adult Indigo will stay with me forever. I was walking hand in hand with my son down a Los Angeles street when this women approached me and said, “You’re an Indigo and your son is a Crystal.” I immediately replied, “Yes!” and the woman smiled at me and walked away. I stood there for a moment, because I had no idea what the heck an Indigo and Crystal was, but I seemed so sure of it when I had blurted out “Yes!” After doing some of my own research on the word Indigo, I realized not only was I an early Indigo but my son was in fact a Crystal child.

A what?

The Indigo child concept was first publicized in 1999 by the book The Indigo Children: The New Kids Have Arrived, written by the husband-and-wife team of Lee Carroll and Jan Tober. Carroll insists that the concept was obtained via conversations with a spiritual entity known as Kryon.

Wikipedia

Except, the website that carries all her beliefs has been quietly vanished. If you want to find this info now, you have to look in Google Cache.

Onwards,

I’m not, nor is the autism community, anti-vaccine. We’re anti-toxin and we’re anti-schedule.

The autism community? Who _is_ this woman with the ego to think she speaks for the entire autism community? Good grief. And as for the section of the community she speaks for not being anti-vaccine? Try these on Jenny:

!http://www.kevinleitch.co.uk/images/eoh/PowerOfTruthRallySign.jpg!
!http://www.autismrally.com/IMG_5365.jpg!
!http://www.autismrally.com/IMG_5426.jpg!

All taken from the sort of rally you’re promoting later on in the show.


JM:

And isn’t it ironic, in 1983 there was 10 shots and now there’s 36 and the rise of autism happened at the same time?

Ironic like this?

No, its not ironic. Its another example of correlation not implying causation – you can see another graphic example on the ‘canards’ page of this very website.

JM:

I believe that parents’ anecdotal information is science-based information

Yeah. Its not.

JM:

environmental toxins play a role. Viruses play a role. Those are all triggers. But vaccines play the largest role right now

No evidence of any kind was presented to back this up. Later on McCarthy sneered at the AAP for talking about studies that weren’t ‘independent’ (what she meant by that is anyone’s guess) but in short succession she said that parental anecdote was good science and that vaccines play ‘the largest’ role in causing autism.

David Kirby was sitting right next to McCarthy and yet neither of them mentioned his HuffPo entry in which said:

And, if 20% of autism cases are mito related, and 6% of those cases regressed because of vaccines, that would mean that at least 1% of all autism cases were vaccine related.

1%.

Lets compare that to the approximately 40% already genetically accounted for. I don’t think its difficult to process which is the larger number.

And after that Dear Reader I simply can’t carry on ploughing through the rest of McCarthy’s contributions. They range from the offensive to the inane.

But here’s an offer for Ms McCarthy – and David, I know you’re a reader so feel free to pass this on:

Come and pay my family and me a visit Ms McCarthy. Just you and maybe your son – no media, no journos, no cameras, no Hollywood bullshit. You and I can have a proper well mannered debate whilst our kids play and see if we still feel the same afterwards. What about it? Got the balls?

Maternal antibodies involved in aetiology of autism(s)

26 Mar

A new study released by John Hopkins indicates that maternal antibodies may play a role in the aetiology of autism:

[a]…possible explanation involves the transfer of reactive antibodies from the mother through the placenta to the fetus.

To investigate the latter, the team measured the antibody-brain reaction in blood samples from 100 mothers with and 100 mothers without a child diagnosed with autism.

Mothers of children with autism had a stronger reactivity or more areas of reactivity between antibodies and brain proteins compared with mothers without an autistic child. The presence of maternal antibodies also correlated with having a child with developmental regression, a primary feature of autism.

Things to note. No one, repeat no one is assigning _blame_ to mothers. I have no doubt there will be an attempt in some quarters to twist this into an attack on the sainthood of autism parents but its really not. Biology is biology. C’est la vie. Nobody in this study had the last name Bettlehiem.

Its a fascinating hypothesis though. Along with the latest cutting edge science that has found a genetic basis in approximately 40% of autism this hypothesis utilises good ideas in a rigorously scientific way. Of course, it may well turn out to be wildly wrong, but its a nice change to see some science that’s not about cure or vaccines but just interesting in and of itself.

New autism parenting website

26 Feb

I’m launching a new autism related website today. It’s a bit of an experiment this one and as you might guess from the name (Autism Parents Every Day) its having a bit of a sly poke at a certain organisation that claimed it showed ‘autism every day’.

What I want from this site is two-fold. Firstly, from a presentational point of view I want a site that is very much like Twitter, or has status updates like Facebook. So whilst it is, in essence, a blog, its a blog that has very, very short entries but possibly on a more regular basis than a traditional blog.

Secondly, from a content point of view, I wanted to present the actual truth about parenting an autistic child. The bad points and the good points – so that it really is ‘autism parents every day’. Not ‘autism after we’ve done our hair and chased our autistic kids into their safe spaces and provoked them into meltdowns every day’.

So far, I’ve got four parents signed up and I’ve asked another few. There’s a few parents I haven’t asked because I know they value their privacy too much to talk about their families so publicly.

So go and have a nose around. See what you think.

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