Archive by Author

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.

Better Late Than Never

12 Sep

Joseph meme-clobbered me with a book meme awhile ago. This is a serious thing as I love books. Fiction, Non-Fiction, prose, poetry – love it all. I had to think long and hard about this.

One book that changed my life

Fiction: Lord of the Rings. My mum read it to me and my brother when we were kids and I was utterly captivated by the depth and strangeness of it all. It sparked a life long (so far) deep abiding affection for fantasy, sci-fi and horror novels and films. Its one of the books I re-read at least once a year.

Non-Fiction: HTML 4 For the World Wide Web by the wonderful Liz Castro. Up to this point I’d been flashturbating like crazy. This book changed my whole approach to web development.

One book that you’ve read more than once

Fiction: The Dune series (not the shitty new ones just the Frank Herbert ones). These are the only works of fiction I know that even approach Tolkien for depth and pure story telling. The first in the series is as close to perfection as a book can get.

Non-Fiction: Simon Schama’s History of Britain Book II: The British Wars – It’s Tudor-tastic!

One book you’d want on a desert island

Sorry, this is silly. One book? I refuse to divulge anything less than a top five. I would recommend everyone has these books.

1) Koko by Peter Straub (probably the best chiller/horror ever written. Classy, reserved, menacing).
2) Flashman and The Dragon by George MacDonald Fraser (if you ever need cheering up Flashy will do it. He’s a literary character – from Tom Browns School Days – placed in Victorian Britain at the height of the Empire. Coward, bastard, rake, hero, poltroon).
3) Only Forward by Michael Marshall Smith. Better known for his ‘Straw Men’ series of chillers, this is an innovative and witty sci-fi. His first published novel.
4) The Shining by Stephen King. His best book IMO. I still can’t look at the numbers 217 without shivering.
5) Fever Pitch by Nick Hornby. A book of empathy. I gave it to my wife to try and explain why football matters. She loved the book but still thinks footy’s crap.

One book that made you laugh

All the Flashman book by George MacDonald Fraser. Seriously, buy one. Read it. You won’t regret it. Oh yeah – Catch 22 as well.

One book that made you cry

OK, here’s where I reveal my inner big girls blouse: Little Women had me in bits.

One book you wish you had written

None really. Pleasure is in the reading.

One book you wish had never been written

Can’t think of anything bad enough to warrant never having been written.

One book you’re currently reading

Fiction: The Last Witchfinder by James Morrow. Great book for skeptics ;o)

Non-Fiction: Designing Visual Interfaces: Communication Oriented Techniques by Kevin Mullet

One book you’ve been meaning to read

The Design of Sites: Principles, Processes and Patterns for Crafting a Customer-centered Web Experience by Douglas K.Van Duyne is top of my Amazon Wish List :o)

David Kirby Part III. Another Twist In The Tale

11 Sep

I’m going through a mini-fascination with video online at the moment. I was delighted to unearth that old video of Brad Handley and I was equally delighted to come across a few video’s of David Kirby on Google Video, courtesy of FAIR Autism Media.

David Kirby Contradicts the Militia

Now, its an article of faith amongst the mercury militia that you since 1992 you haven’t been able to leave your house without tripping over a huge amount of autistic people. I remember Erik once saying that ‘everybody knows someone with autism’. So I was struck by the opening of the video interviewing Kirby.

So if I understand the ‘logic’, since 1992 autism has been increasing massively and according to Erik et al you can hardly move for autistic people and yet as of 2002 David Kirby has never met one. Odd. I mean, as he says:

Bit of an odd discrepancy, no?

But hardly worthy of a blog post all to itself. No, the really interesting stuff popped up a bit later.

David Kirby Contradicts David Kirby

In December of last year, I commented on an odd discrepancy in David Kirby’s take on the thiomersal hypothesis.

Briefly, blogger Citizen Cain had an email exchange with David Kirby earlier in 2005:

Understandably, Kirby doesn’t seem interested in mucking around in the data with me too extensively, or in answering my detailed questions. But in an e-mail, he did address the key point, and concede that _“if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.”_ He also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

It struck me as odd as I remembered something Kirby had told NYT reporters in an interview with the New York Times also in 2005:

Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year.

I was puzzled by the discrepancy of Kirby arbitrarily adding on 2 years <a href="so I mailed him. He replied:

The Times misquoted me. I actually asked for a correction, but did not receive one.

OK, so my next stop was the two NYT reporters. What did they say about the whole thing?

Reporter Gardner Harris said:

Prior to publication, we read the entire passage relating to this matter to Mr. Kirby. He approved it.

And Anahad O’Connor said:

we stand by that quote. David Kirby was interviewed at length, and we verified that quote and additional information with him before the article was published.

I was disappointed at the time and asked David Kirby to clarify. However he refused to comment further and did not reply to any of my emails, nor respond to any blog comments I left either here or on his page at the Huffington Post blog. This is strange behaviour coming from a man who said:

Seems like Kirby only wants a debate when he hasn’t been caught out.

Anyway, this is all old news. And its still not established. Kirby denied he was referring to 2005 the two reporters say he definitely was. Who to believe?

How about David Kirby?

Well, well, well. Correct me if I’m wrong but the year Kirby mentions at the start of that snippet is *2005* is it not? Of course, the details about falling/rising cases have been gone over and over now that its obvious cases are in fact *still* rising. the important thing for me was hearing David Kirby mention 2005. Something he denies he ever said.

What else does Kirby say about California and 2005?

Yes, they do Mr Kirby. Closely enough to see that cases are still rising. Closely enough to see you’ve been caught in a lie. Stop moving the goalposts and then lying about it Mr Kirby.

We’re here Mr Kirby. We always have been.

Ready when you are.

Generation Rescue: Time To Come Clean

10 Sep

Generation Rescue Redefine Autism

JB Handley’s Generation Rescue created quite a stir when they first launched. They went with a simple, clear, easy to understand message. The first part of that message was:

So, autism is a misdiagnosis for mercury poisoning as per Brad Handley in February 2005. You heard the guy – if you line up one hundred symptoms of mercury poisoning and one hundred symptoms of autism they are exactly the same.

Which is why its odd to find a post on the Evidence of Harm Yahoo Group from one Bradford Handley dated August 30th 2006 which reads1:

Guys, it ain’t ONLY the mercury.

So in Feb 2005, autism is mercury poisoning. By Aug 2006 its not. Now, its apparently more. Lets not forget that Brad is also quoted as ‘refusing to admit the possibility he might be wrong2.

What else can Brad inform the viewing public about autism?

So at least now we know where John Best Jr gets his ridiculous ideas from. But even that poster boy for truly spectacular idiocy can have his idiocy exposed3 as I did when I got John to admit that:

Your 19th century autistics had genetic autism not MP.

True, he couldn’t see how this invalidated his belief that autism didn’t exist in the 19th Century (apparently ‘genetic autism’ isn’t autism – I know, I know, try not to laugh) but wow, Brad took it even further than John. Going on national TV and now internationally on the Web to reveal that he’s _more dogmatic and less rational than John Best Junior_ ! Something I have to admit, I thought was an impossibility.

Is there anything else Brad can tell us about the nature of autism?

All are poisoned. So the kids who have Rett seem to have flown past the end of Brad’s nose when he wasn’t looking. Same goes for the kids who’s mothers caught wild strain Rubella4 – just….never made Brad’s list.

Isn’t it reassuring that Brad and Generation Rescue are so informed and factual about autism? Can you imagine how it would be if we couldn’t trust him on an even _more _ important point such as treatment for example?

Generation Rescue and JB Handley’s Issues With Time

Notably, how they seem to be running out if it.

This interview was broadcast in Feb 2005.

We can tell two things from that. First we can tell that Brad says chelation will work in one to two years. Secondly, we can tell that Jamie Handley started chelation in September 2004. Or to put it another way, exactly two years ago.

And how sure is Brad of this ‘one to two’ years thing?

Wow – so maybe not even two years – ‘probably less’. And what should the ‘end result’ be? What should we expect?

100% recovered. Neurotypical. No different than their peer group.

Does anybody else think that, seeing as Jamie has been chelated for two years now, we should’ve seen a neurotypical Jamie Handley emblazoned across every media outlet Brad’s chequebook could open for? That we haven’t tells us something about Generation Rescue and their reliability as good sources of information.

But something else doesn’t ring true here either. Jamie Handley’s list of meds5. This is *daily* by the way.

Before Breakfast
B12 shot
Probiotic
B12 x 2, Xylitol nasal spray 2 sprays
TD-GSH 1/2 ML

With Breakfast:
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule each
FolaPro In Juice 1/4 capsule
Intrinsic B12 in juice 1/4 capsule
Nucleotides in juice 1/4 capsule
EDTA 1 capsule
Horsetail Grass 1 capsule
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
GABA 1 capsule
Liver Support 1 capsule
Ora-Placenta 1/2 capsule
RNA in water, alone 0.5 ML

After Breakfast
BH4 1 tablet, Swiss
CCK, Strep Cocktail, GSE, Caprilyic
DMG 1 tablet

With Lunch:
Super Digestive Enzyme 1 capsule
Ora-Adrenal 1/4 capsule
HHC Multivitamin 1 scoop
B Complex Sprinkle
Citrulline Sprinkle
Niacinimide 1 capsule
Quercitin 1/4 scoop
Sam-e 1 scoop
Cell Food Sam-e, Oxygen 4 drops, 4 drops
Magnesium Citrate 1 capsule
Grapeseed Extract 1 capsule
Vitamin C 1/4 tsp (375 mg)
Sphingolin 1 capsule
Pycnogenol 1 capsule
Fenugreek 1 capsule
RNA in water, alone 5 drops

After Lunch
Vitamin K, Vitamin E, SP, CoQ10, Flax
Mag (1), Zn (1), Molyb (2), SE/1 drop, K
CCK, NADH, ATP, DMG 1 capsule each
Strep Cocktail 1/2 tsp

With Dinner
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule
GABA 2 capsules
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
Carnetine 1 capsule
Gymnema Sylvestre 1 capsule
Curcummin 1 capsule
Vitamin D 2 capsules
EDTA 1 capsule
Riboflavin Sprinkle
Malic Acid 1 capsule
Horsetail Grass 1/2 capsule
Zen 2 capsules
Idebenone 1 capsule
Ambrotose 1 scoop
RNA in water, alone 5 drops

Before Bed
IMF5 1 capsule
Strep Cocktail, Candex, GSE 1/2 tsp & 1 capsule
CCK, Lactoferrin, Caprylic 1 each
Charcoal, Magnesium Citrate
EDTA Suppository

This is what Jamie Handley is given every day. Quite apart from the jaw dropping size of the (daily!) list (a list Brad says: ‘we created it through all of our reading and correspondence with other parents’) is the fact that surely a neurotypical child (as Jamie should now be after undergoing the requisite two years – probably less – of treatment) wouldn’t need such a list. Especially a list that still seems to contain chelators – although interestingly not TD-DMPS I note.

Sources

1: EoH.
2: WWeek.
3: Me.
4: CDC.
5: CK2.

Another Day, Another Murder

30 Aug

Incredibly, as reported by abfh, yet another autistic child has been murdered by their parents – or foster parents in this case (if you follow that link please be aware that there are some particularly tasteless comments from John Best in the comments section).

Marcus Fiesel’s foster parents knew all along their missing boy was dead, say Hamilton County prosecutors. They knew, prosecutors say, because Liz and David Carroll Jr. left the 3-year-old alone for two days in a locked closet while they attended a family reunion. They knew because David Carroll later burned and hid Marcus’ body. They knew even as they cried before TV cameras, begging the community to help them find the missing boy.

Source.

I want to be absolutely clear here. These people are scum. Seriously. Scum. My liberal upbringing wants me to try and ‘understand’ how things like this could happen but to be honest, after a spring and summer in which poor Marcus is the fifth murder victim of their parents in the UK and US I don’t give a shit about understanding. They’re scum. Treat them as such.

No doubt this pair of low life will try and play the card that Karen McCarron is in the process of playing – the good old ‘get out of jail free’ insanity card. And why not? Despite the planning that went into sweet Katie’s murder and despite the intentional, wilful cruelty that Liz and David Carroll visited upon their foster son I’ve absolutely no doubt that this collection of low lifers will continue to put themselves first, much as they did when their poor children were still alive.

When Katie was murdered (and yes I know that I’m not supposed to use that word but you know what? If Karen McCarron doesn’t like it, she can sue me) I took refuge in my family and my own beautiful autistic daughter.

Below is a superlative video from Estee of The Autism Acceptance Project which I heartily recommend as an antidote to all the horrors that autistic people seem to be on the receiving end of just lately. Sadly, Ryan, Katie, Christopher, William and now Marcus will never be involved in so beautiful and life affirming a project.

Biomed Is A Spectrum

29 Aug

Every so often someone attempts to misrepresent my statements and/or thoughts/blog posts etc. Why? Because it suits their agenda to do so I guess.

One of the usual misrepresentations is my opinion on biomed. As an example, a commenter on YouTube recently told me that I was against treating autism in any way, shape or form which was news to me. When I asked this commenter to point to any proclamation of mine to back that up, he fell strangely silent.

There are people ‘out there’ to whom life truly is black and white. Autism is mercury poisoning (or for the real hardcore – thiomersal). Autism is hellish. Kev Leitch is anti Biomed.

Obviously, none of those things are true but people believe it. Go figure.

So Biomed. Am I against it? No. Am I against what some people might think of as Biomed? Yes.

I’m not against biomed as a concept. If I did I’d be a rather large hypocrite. My daughter takes vitamin supplements (Vitamin C), she also take Omega-3 fish oil. She also uses a steroid inhaler as she’s asthmatic. If she’s having trouble sleeping over a period of nights we may use melatonin. Does that make me a biomed parent? I’d guess it does to some people. I’m quite happy to be thought of as a biomed parent, just as I am a neurodiversity parent. Whatever.

Here’s the thing. Vitamin C supplements, Omega-3 oil, steroid inhalers and melatonin won’t ever ‘cure’ autism. She has those things because we feel, as her parents that she needs them. Amazingly, I give supplements to my non-autistic kids too. Because we feel they need them. Not because we’re treating them for something.

There’s a disturbing amount of people however that _do_ see these things as treatments for autism. The idea is bizarre. How exactly does a steroid inhaler ‘cure’ autism? These are the people that I find troubling. I am against what these people try to claim. I’m sure some of it helps some _comorbidities_ associated with autism, but I am equally sure it won’t ever cure autism. Do I have an issue with that? Yes and no. There’s nothing wrong with anyone trying to help their kids to not be ill. However, it saddens and troubles me to see autism medicalised and touted as something that can be cured with minerals, HBOT, chelation and the other extreme therapies. I’m sorry but that stuff is bullshit. The people who peddle it are, at beast, wrong and at worst, trying to rip people off.

Here’s a prime example of the worrying state of biomed:

My son is 10 months old. He had oxygen deprivation at birth and his SPECT scan shows mild hypoperfusion in the left temporal lobe, a little less in the right temporal lobe, frontal lobes and in the cerebellum. The scan report however only says mild hypoperfusion in the left temporal lobe. I have read that hypoperfusion in the temporal lobes is a hallmark of autistic children. At this stage no one knows how my baby is going to develop, but I don’t want to take any chances. he’s already delayed in speech, imitation and playing social games.

Yes, you read that right. 10 months old. And his mum is concerned because a 10 month old is apparently speech delayed. Don’t know about you but I didn’t know whether to laugh or cry when I read that. For extra chills down your spine read the rest of the responses. No one – *no one* – questions why a 10 month old needs HBOT. or, even more pertinently, _what’s odd about a 10 month old not talking_ ?

This is the sort of stuff that scares the crap out of me.

On the other hand, for some people, biomed is nothing more than a GFCF diet. Didn’t work for us but what the hell – can’t do much harm either.

So biomed is a spectrum too. However, there’s a distinct line that gets crossed as well. For some people, biomed fits their preconceived agenda of all doctors being evil. These people are dangerous. Anyone who sees life in absolutes is dangerous. Life is not that simple or clear cut. Such people are usually deeply unhappy about some aspect of their lives and need to fabricate an enemy or a conspiracy to rail against. Instead of seeing the reality of human screw-ups they see a paranoid fuelled plan to stop them or hurt them or both on a personal level. The tragedy is how often they drag their kids along with them. It’s really worrying to me how much the mercury militia crowd have moved down that path. It’s one thing to suspect thiomersal might play a role in autism and quite another to ‘know’ it and refuse to accept, or even _read_ anything to the contrary, and yet that’s where they’re headed as a group.

Someday I’m going to blog about the Combating Autism Act in the US. Its fascinating to an outsider to see the evolution of this bill and reactions to it from the mercury crowd. It needs a really in depth examination but suffice it to say (for now) that the mercury militia aren’t happy as the CAA disregards specific vaccine language. That’s how much tunnel vision exists in the mercury militia at the moment – nothing to do with vaccines? Not interested.

Amazing how even autism can become a single issue subject to some isn’t it?

So – biomed – its neither good nor bad. There are things wrapped up in it that seem to be good and things that make no sense and are very worrying. Same goes for biomed people.

Please also see Zilari’s recent post on the subject.

← Older Entries
Newer Entries →