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CDC: “Thank you, Sallie, May We Have Another?”

27 Sep

A CDC study released yesterday found no evidence to support “a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years.” In other words, vaccines don’t scramble your brain.

The study didn’t examine autism as an outcome, although that is almost certainly what it was intended to get at. Instead, it looked for whether children’s exposure to thimerosal before birth or in infancy had any relationship to their later performance on 42 standardized tests which one would expect to be affected by autism. For each of the 1,047 children in the study, the researchers assessed speech and language; verbal memory; achievement (letter and word identification); fine motor coordination; visuospatial ability; attention and executive function; behavior regulation; tics; and general intellectual functioning.

CDC tried so hard. They invited one of the queen mercury moms, Sallie Bernard of “SAFEMINDs,” to participate in the planning of the study. They brought on a panel of outside advisors. The team spent at least two years administering forty-seven separate tests to each of the children and analyzing and writing up the results. They printed every piece of data generated in a companion volume to the published study.

They got kicked in the teeth, but don’t feel bad for them. They should have known better.

The autism-vaccine contingent has responded by spluttering about the study not having been large or random enough, and by accusing the researchers of being biased and of ignoring important associations in the data. It’s no news that these people don’t believe anything that comes from CDC – they’ve said as much, very clearly. But one would think that if you let the antivaxers in on the process from day one, if you were totally transparent, they couldn’t object, could they? They’d have to see the light when the results came back and say, “Well! I guess it’s not the vaccines after all!”

CDC, if you really thought that would happen, you were so, so wrong.

The appearance is that Sallie Bernard was going along with all this up until the day the results came in and – shockingly! – showed thimerosal didn’t do one bit of harm. If she’d thought from the outset, as a SAFEMINDs press release now claims, that there weren’t enough kids in the study or the sampling were biased, does anybody think this gadfly would have nodded and smiled and gone right along with it?

No, everything was fine and dandy as long as she was enjoying being fawned over as a “representative of the autism community” and a fellow-scientist instead of the commercial marketer she actually is. Here’s a clue, Sallie: If you’re going to play scientist, you have to follow the rules of science, and that means you stand by your results. You don’t get to say “heads I win, tails you lose” by waiting to see the outcome before deciding whether the study was any good.

And you really don’t get to have CDC at your beck and call, spend hundreds of thousands of taxpayer dollars to do a study to your specifications, then turn around and call them liars when you don’t like how it comes out.

And you, CDC? You’re not just a victim here. Every time you say “let’s do more research” or “we are examining this issue” in order to appease the mercury moms, you increase the chances that kids will go unvaccinated because you failed to give their parents confidence in the safety of vaccines. When you say a study is reassuring and then highlight what is virtually certain to have been a chance finding (a statistical association between higher thimerosal exposure and transient tics in boys) without making it abundantly clear that some false associations were inevitable given the study design, you defeat the purpose of doing the study. People who understand statistics weren’t the ones who needed to be convinced thimerosal is safe; the antivax crowd will never be convinced no matter what. You needed to speak to the well-meaning parents who worry about the rumors they hear at playgroup, and not only did you give them something new to worry about and whiff the opportunity to show them that the likes of Sallie Bernard are all about the rhetoric – you managed to tee up for yet another round of Righteous Long-Suffering Parents vs. Heartless Government Scientists.

Haven’t you learned yet who wins that one? Or are you going to invite Sallie back for another round of research?

Postscript: More commentary on this study by Arthur Allen, Orac, Joseph, Interverbal, and Kristina Chew.

I need your help readers

11 Sep

As you may (or may not) have noticed, my output on this blog has lessened over the last few weeks. There are lots of reasons for this – I’m working a lot more in the evenings for example – but for a variety of reasons I simply can’t blog as much as I used to.

However, I do not want to either stop blogging or stop _this_ blog. So what I am proposing is that Left Brain/Right Brain undergoes a bit of a change. Not in focus so much but more in style, content and – above all – writers.

I want to make this blog a multi-author blog. That is the first change. I want to ask you, dear readers, if you would like to consider becoming bloggers? I am not asking for any kind of commitment in terms of time or regularity but it never escapes my attention that there are some pretty damn smart people who comment on my blog (and no doubt lurk too) but who don’t own a blog themselves. I would love to see your thoughts expanded into semi-regular blog entries. I’m also aware that there are people who already have a blog but who don’t post very much – maybe you would rather move your efforts to a team based blog?

What I would really like is to get a team of say 20 people blogging which would assure that there was at least one post per day made.

You will not be censored in any way but your subjects should be about your experience with autism, your familial experience with autism or your professional experience with autism. If you write about these subjects I would only tolerate ‘acceptance’ led posts (not to say every post you make must be about acceptance but you know what I’m talking about).

I would also like to see autism science posts and posts exposing autism related quackery.I would expect these posts to be well referenced.

You can post under your real name, or a pseudonym (or both!) – you don’t even need to tell me who you are. I don’t care. I’m interested in what you say, not who you are.

I guess I would like to see this site become more of an ezine/magazine rather than a blog.

If you’re interested, let me know, either in the comments section or by email (kevleitch@gmail.com).

Kev Tumblr

30 Aug

I’ve signed up for a new service which is a bit like a multi-media linkblog. If you’re interested it has an RSS feed of my entries. Bear in mind though it may get pretty random on occassions.

Starting Something

26 Aug

Sometimes, you start something and it captures part of a mood/vogue and whilst zeitgeist might be too strong a word, there is an obvious and immediate resonance with people. I’ve been lucky enough to be a part of two such things. One was the Autism Hub. The other was a simple video of Meg I shot on a chilly spring day in 2006 and posted a few weeks later with a song by Christina Aguilera as its sound track.

The song ‘Beautiful’ was specifically chosen because I believe that my daughter is beautiful. I also believe that that fact that she is autistic helps contribute to that beauty. It was also meant as an ‘answer’ to those who wish to destroy any positive feeling my daughter might have about herself as an autistic child. She is beautiful in every single way.

Since I posted it, it has brought me into contact with a large number of parents and siblings as well as autistic people who believe, as I do, that its actually OK that our kids are autistic. Its not great and its not bad. Its just OK. Not in the sense of ‘rating’ a persons properties but in the sense that autism is part of who she is, like dark hair, blue eyes, big smile, chubby cheeks and a penchant for terrible boy bands. None of these things are great either. They just are. I wouldn’t love her less or more if she were blonde, brown eyed, sallow cheeked and have a penchant for Machine Head. Autism is part of the mix that makes Megan Megan.

I want to post some of the (over three hundred) comments that are on the YouTube page for the video. I want to do that to show to you that there are plenty of glass-half-full people out there. But first, the video itself.

1) This one made me cry, too, out of total joy. These videos make me so emotional because there is nothing else out there like this. All we see, every day, is things like Autism Every Day. So to finally see the joy, the love, the affirmation…it’s very overwhelming. Thanks.

2) love everywhere!

3) My son has Autism and I agree with your statement…beautiful! I am tired of the doom and gloom out look so many people have.

4) just beautiful. my sister loves to jump as well and she is 7

5) i just wanted to say that i love your video…my son loves to bounce/jump and this touches my heart…

6) This video image stayed with me for days.. I had to come back to it. Thanks! I havea 4 year old with autism. Sometimes it helps just to see the beauty in things

7) This is a great video, my son is 14 and he has autism and I show him the video and He will love to have one to jump. Thanks for sharing this moment of joy.

8) She is such a cutie! We have a 14 year old son with autism. He struggles so much to fit into our world. Our trampoline is his sancuary … he can jump for hours … the joy in his face like your little girl … I can look at him for hours. Thanks for posting this picture of autism.

9) Love is a beautiful thing and I know your daughter must feel filled with love especially when she see’s this beautiful tribute to her!
Stacey (a daddy’s girl too!)

10) She is so stunning 🙂 My daughter is 3 with mod-sev classic autism her name is Sharlet and we adore her. Megan is just so pretty!

11) Beautiful job, Mom. Megan is beautiful! Her eyes are stunning! The truth is..she knows the “truth” more than most us. She is helping out the universe. Thank you! Your video opened up my Heart! Keep em coming!

12) Beautiful video! I’ve noticed that the most successful people are the ones whose parents instilled confidence in them from the earliest age. It’s obvious that Megan is very loved and appreciated.

13) What a beautiful daughter you have. How wonderful it must be to get completely lost in simple things, like bouncing on a trampoline. People with autism don’t live in a world of their own, they just experience and interpret the world in a different way to us.

14) She’s beautiful and precious. Enjoy every minute.

15) I am a high functioning autistic and have a little brother who is also autistic.
You have a gift in her, What most see as a disorder can one day be a blessing.

16) Truly beautiful. I absolutely love when parents accept Autism not as a tragic disorder, but as a simple difference in thought processes that makes a beautiful creation. The only loss remorseful parents face is what COULD have been a “flawless” child, but we all need to realize children like yours aren’t flawed. There splendidly and wonderfully perfect.

17) Beautiful-Christina Aguilera-From the “Stripped” album. I love this video, the song is perfect, she really is. My cousin and another cousins son both have autism. They are amazing kids.

18) She is precious. And I’m so happy that you see her as the beautifuk, positive, amazing child that she absolutely must be. Thank you for posting this video.

19) Autism is beautiful,they notice things we take for granted everyday.

20) I dont see a girl with autism. All I see is a beautiful little girl doing what kids do best, and thats having fun.

21) I am a teacher who works with children with autism. I love what I do and I love my students. Your video made me cry. Thank you for sharing this special video!

22) PRICELESS! BEAUTIFUL video on a lifelong condition, true angels amongst us. Blessings.

23) she has the most BEAUTIFUL eyes
you are really lucky to have such a wonderful and charming daughter *my favourite comment, we are lucky for ALL our kids*

24) you guys have a beautiful little girl. she is a blessing

25) that gave me goosebumps that was beautiful i can really feel the love xx congratulations on your blessing

26) I love this 🙂 My sons autistic, and its a very interesting world when you lookat it through the eyes of an autistic child

27) This brought me to tears.
What a wonder this world is.

28) *Meg’s celeb signing*:
To live is to bubble
Meg, you’ve clinched it.
Bounce on you fab little star.

Donna Williams

29) This is beautiful, she has the most precious face. Thanks for pointing out the beauty of these children.

30) Either you get it or you don’t…as for me, tears of joy to you KevLeitch. Getting chills from watching this vid….

31) I loved the video. The look in her eyes in the end of the video reminded me of our son Cooper who also has autism.

32) She is very beautiful, and with lovely blue eyes. I bet she will develop an special ability. Good luck!

33) Your daughter is beautiful…her eyes are breath taking.
I loved your message, No tragedy, no train wrecks, no loss…

34) Thank you for sharing it was great. I hope videos like this can help people see how special this kids are.

35) amazin video very powerfull. i work with autistic children they are amazin people.

36) What a beautiful clip, a rarity on Youtube, and very moving. You must be so proud to have her as your daughter.

37) my little brother is autistic, and he is beautiful too. A lovely video, thanks for sharing it

38) these children are the reason why i get up and go to work every single day for the last 4 years…they are all a truly a gift from god …no matter what part of the spectrum they are on…i love them all

39) hi i can relate to the video my grandson is 9 and so beautiful as well,oliver is in his own world most of the time,does not have much speech but my heart swells with pride at the smallest achievment,you see to oliver he has amountain to climb every step of the way,he is loved and cherished by us all.He has taught us so much.god bless the wonderful children your video spoke volumes thankyou

40) How old is she? Like 9? And she loves to jump on the trampoline and has autism? You do have a beautiful daughter. I’m 21 years old and I have autism as well.

41) Awesome, this is exactly how I feel about my two Autistic sons. They are awesome boys and I am very proud of their achievements.

42) this was beautiful. there’s nothing wring with autism it’s bueatiful. and u voiced that in this video really well.

43) thnx for being allowed to watch. that was beautiful. i’ll show it to my little boy. he’s diagnosed AS and loves the trampoline too

44) god bless you, those of us given a child with autism, my son is 13, are given a wonderful gift its an honour to have them

45) I have 2 sons with autism. I challenge ANYONE to watch this fantastic video and not get a tear in their eye- or lump in their throat. This is fantastic. Your daughter is BEAUTIFUL; and so are my boys.

46) That brought me to tears. Great song choice. My daughter is so sweet & funny (ASD) and going to Kindergarten this year

47) You have a wonderful daughter. My son is autistic and cannot speak. Enjoy every moment you have with her.

48) I am an autistic adult. It’s a truly beautiful thing to see a video that does not portray autism as an apocalyptic thing. I applaud you. I cried while watching this video. All the best for you and your daughter.

49) thank you so much for sharing this with us. this is probably one of the few videos I have seen that reflects autism in a more positive light. to many people in this world treat it as an awful epidemic but if there is one thing I have learned from growing up with not one but three autistic brothers it is that autism can be more of a blessing than a curse.

50) Thanks for the video. I have an autistic son … and treasuring the positive things about autism is what makes our lives enjoyable. It’s nice to just slow things down and just be … in stead of always trying to “do”.

Lots of people ‘get it’. Nice to know eh?

About Megan

7 Aug

An article I was interviewed for a long time ago, made it into The Guardian today. There are some things about it I don’t like. The headline for example ‘its a way of life’. Really? No its not. There is no choice involved. I also don’t agree with Gareth and Amy’s direction very much. Which is why I don’t post on AFF any more. I agree with Simon Baron-Cohen – difference *and* disability.

However, there was plenty to be glad about in this article. It was predominantly written from the point of view of autistic people themselves with cameo’s from myself, Mike Stanton and Simon Baron-Cohen. This is as it should be.

I talked about how, despite the challenges we face with Meg – and we do – we would not want to cure her should a cure ever be developed. What we wish to do is help her to grow to a point where she can make such a choice herself. And make no mistake, if a cure was ever developed and if Meg wanted it, I would ensure she got it. She is first and foremost my daughter and in the same way I do not want to assume she wants a cure I do not want to ever assume that she might _not_ at some point. My own personal beliefs are entirely secondary to what my kids want. Kids first, advocacy second.

And so, I think its appropriate, should you be interested, to talk a little about Megan. Something I used to do all the time on this blog and something I hardly ever do any more. Its not because I don’t want to, believe me.

Meg has started to blossom in a way we had sort of stopped hoping for: last week, Meg came over to me, looked me in the eye and said ‘drink’. Wow. A word not used in a parrot-fashion ecolalic way but in a directive way. Heart-thumping, outwardly cool (heh) I went to the kitchen and asked casually (voice travelling several octaves) ‘what do you fancy Meg?’ (possibilities: milk, water, Ribena, fresh orange). She wandered over to the Ribena and pointed to it: ‘that’. I nearly fell over.

As most of you know, talking is not always the done thing amongst our autistic ankle-biters. However, _pointing to something_ is considered gauche in the extreme. In the space of five minutes, Meg had said two words and pointed. This was more than in the previous 12 months.

Since then, her new found interest in words and pointing to objects of desire has not abated. It has in fact extended itself to reading and revealing the true sponge-like nature of her intelligence and learning ability. We went outside on Sunday so the girls could stare at the rare appearance of the strange yellow ball in the sky (like the rest of the country, they’ve come to associate ‘summer’ with ‘rain’). Meg looked nonchalantly over my head, pointed upwards and said’ moon’. Ready to say ‘no chuck, that’s the sun/a squirrel/some morris dancers’ I turned around and sure enough, there was a day-moon. Translucent, barely there and certainly looking nothing like a child’s typical view of the moon.

Since then, Meg brings books over to us, points out things in them and says the words, the letters, the numbers, the colours, the shapes. We reckon she’s got a hitherto totally unsuspected vocabulary of about 60 words.

So what does it mean? Who knows. We are well aware based on past experience that this sudden desire to speak could recede as quickly as it appeared but its enough to know its there. What happened to trigger it? Who knows. Not me. Meg triggered it. She wanted to speak and point so she spoke and pointed.

Pretty cool though.

Karen McCarron’s Confessions Allowed

5 Aug

Over a month ago I posted an entry that detailed how the Mccarron family were being subjected to more court time as Katie’s killer, her mother Karen McCarron, decided to instruct her solicitor to try and block her admissions to Katie’s murder from the court record – that they would not be available as evidence during the trial proper.

On Friday, the court eventually decided that *all eleven* confessions will be allowed to be heard. These confessions are on video tape, in police records, in doctors records and in the memories of Katie’s family members such as Mike and Paul.

There are two aspects to this whole thing that bother me a great deal:

1) The local support group, ANSWERS, continue to openly support Karen McCarron and also testify in her defence at court. I would wager that not one member of this ‘support group’ has been around to see the McCarron family since Katie’s murder to offer ‘support’ to Paul McCarron. They are too busy defending the actions of child killers.

2) What sort of Judge takes over a month to make a simple decision? It is utterly cruel and heartless to the McCarron family to keep them hanging on in the manner they have been whilst this person dithered around making what should quite obviously be – given the fact there are eleven separate confessions – an easy call. Lets hope he pulls his finger out when it comes to the proper trial.

Most people who are regulars on this blog will know that I have a good relationship with the Mccarron’s. We are very close. They were asked by their solicitor not to discuss the case and so they have not but even though they have not, the pain they are suffering through is tangible. This ruling will not take away that pain but I hope it may finally offer them a little chink of light in the battle for Katie’s memory.

Happy Birthday Katie

22 Jul

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

Remember

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

~Algernon Charles Swinburne

New Site Launch

20 Jul

So, I’m launching a new site today and this site has nothing to do with autism.

Since I outed myself as manic depressive I’ve had a lot of emails expressing curiosity about manic depression and as I have now been blogging for about four years now it seemed a natural fit to start a blog about manic depression. I don’t expect it will affect output on this blog particularly and I have no intention of ceasing writing about the quackery associated with autism or the rights of autistic people to have respect for who they are.

Anyway, I’d love to see you over there if its your thing.

Meme time again

15 Jul

Anyone ever notice that ‘meme’ is spelt (well, constructed) ‘me-me’. I merely mention it in passing ;o)

Steve tagged me. The rules are:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I’m not going to tag anyone. Consider this an open invitation to participate should the mood take you.

OK. Bloody hell. Eight.

1. I lived in France for nearly a year. It was great apart from one time I got an abscess in one of my wisdom teeth and had to have it pulled. The first dentist I went to answered the door wearing a bloody apron and stinking of nasty table wine. We parted company immediately. The second one only used a local anaesthetic during the procedure (a root canal). When I got out I drank the best part of a whole bottle of Eau de vie.

2. I once met Lars Ulrich, the drummer from Metallica. He was speeding very badly at the time and he talked even more than usual. I went from awed star-struckness to thinking ‘what a twat’ in the space of 20 mins.

3. Whilst I’m name dropping, last year I literally bumped into Simon Pegg and Nick Frost on the concourse at Birmingham New Street station. It was a Monday a.m. and I was in my usual pre-work, pre-coffee grump and I was just about to snarl something typically Kevy at them when I noticed who they were. They were very pleasant guys (doing the promo tour for the release of Hot Fuzz I assume) and I totally forgot to take a picture of them on my phone. Gah!!

4. My favourite horrible indulgence is dunking bourbon biscuits into tap water and then slurping the whole mess back. Not a pretty picture.

5. I believe book burning is a crime against humanity except in the case of Jeffrey Archer where it would be criminal not to.

6. I proposed to my wife outside a Halfords. We were both sitting on a bench at the time. Its my opinion that the romantic possibilities of car-parts sellers are often overlooked by potential grooms. But even so, the mundanity of the surroundings didn’t distract from her beauty in one single way. And they never have since.

7. My first teacher (I was five) was called Mrs McCabe. She was unbelievably hot.

8. When Anthony (my now 15yo son) was 2 I forgot to tighten up a stairgate properly and he managed to push the whole thing – himself included – down the stairs, riding it like a toboggan all the way down whilst screaming. I ran down after him, heart pounding in horror and guilt and picked him up expecting to be confronted with a mentally scarred, terrified toddler. Turns out he’d been laughing, not screaming. ‘AGAIN, AGAIN’ he yelled as my blood pressure reached Chernobyl velocity.

Justice for Katie

28 Jun

Remember Katie

When Mike and Paul McCarron came to visit us recently, one of the most sombre and important parts of the day was them giving us some of the ribbon that they had selected to remember Katie. They had fashioned the ribbon into remembrance bows and as well as some of the loose ribbon, gave me one of the bows.

The bows are worn when the McCarrons go to court to do justice for Katie. I am proud and honoured beyond the capacity of words to express that I too, can wear my bow on the days the McCarrons go to court.

Today is one such day. A very important day. Today the judge who will hear the trial will decide if the confessions that Karen McCarron made (including the confessions made to the Police) will be admissible as evidence in the trial.

It may well sound strange to you that a confession – or in this case, a series of them – could possibly _not_ be admissible as evidence. It certainly did to me. It may well also sound strange to you that not only could a mother kill her child, she could also callously attempt to wriggle out of what she has done by trying to halt the admission of confessions she freely made into the evidence the court can hear. It certainly did to me.

Tomorrow is not the trial. It is not even the start of the trial. However, tomorrow could be the first day that Katie finally has just the twinkling possibility of some justice in her name.

On other subjects

Someone else who would benefit from some justice is Patrick Holford. Read where at NHS Blog Doctor, Holford Watch and Mike’s blog.

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