Archive by Author

On being considered retarded

1 Nov

Since my daughter was diagnosed, a vast range of people have aided my comprehension about some aspects of autism from a first hand perspective and have enabled me to try and apply the wider lessons from their experiences into how I interact with my daughter as an autistic person.

To me this has been the most invaluable benefit of the Internet and one that simply wouldn’t have been possible without this particular technology. Recently, technology has moved beyond words and into moving video. This has enabled some of the people I hold deep liking and respect for to let us more fully hear their opinions and thoughts.

This is vital. I fully subscribe to the idea of ‘nothing about us, without us’ which means that any organisation that purports to speak for autistic people should _fully include_ autistic people. Until now, such organisations have been able to cling to the lie that autistic people cannot hold opinions or speak for themselves. This perception is now being actively challenged.

When I first started Autism Hub, there were a number of people who topped my ‘most wanted’ list. The people I really wanted to be members. This list included Autism Diva, Joel Smith, Jim Sinclair (still not managed that one!) and Ballastexistenz aka Amanda Baggs. Autistic people who are also great teachers.

Amanda has been of particular help to me and has (is) helping me see autistic rights in the wider context of disability rights, helping me move beyond a solely medical view of autism and above all else helping me see ways I can help my daughter. Maybe not right now, but as she ages. She’s not doing this by strategies or by being a walking, talking exhibit but simply by allowing me (all of us) to read her blog and now to view the video’s she’s made and will, I hope, continue to make.

The latest one is my favourite so far. In it, Amanda talks about being considered retarded and how first impressions only really alter depending on the person doing the ‘percieving’. Amanda starts the video by saying:

People often ask me what it’s like being considered retarded, or being ‘trapped in a body that looks retarded’

This implies that retardation (what UK people call ‘learning difficulty’) is an inherently negative state and that one should not want to ‘look retarded’ or at least should be ashamed of having an appearance that resembles that of someone who is considered to _be_ retarded. One of the commenters to the video Amanda made was that ‘you don’t look retarded you look perfectly fine’. That entirely misses the point I think Amanda was trying to make; that it’s a fact that looking retarded _is_ perfectly fine. There should be no shame or inference of shame in ‘looking retarded’. To infer otherwise is deeply insulting to a wide range of people who carry that diagnostic label and should not be trotted out as a back-handed compliment.

Amanda is self-honest in an age when self-honesty is almost totally absent. Where celebs trot out fashionable ailments like binge drinking and check in for extended stays in celeb-clubs like The Priory Clinic, Amanda states quite happily that yes, she looks retarded and yes, in some areas she _is_ retarded. She’s quite happy with that and why not?

Amanda has mentioned in the past the bizarre change in attitude to her that people undergo once they know she can type. When they first see her, they think ‘retard’ with all the negative connotations that _society has saddled that word with_ and never consider that maybe ‘retard’ isn’t something to be used with disgust, or with pity. Amusingly, once they learn she can type she suddenly stops meeting that criteria in their eyes. Instant normality! Just add keyboard!!

Amanda stims, she flaps her hands, she uses a talking keyboard to communicate. But she doesn’t only become normal after the third item in the previous sentence. She’s always normal. And autistic. And if we’re talking about the speed she can process some information sometimes, she’s also retarded. Retarded is another word for ‘slow’.

We have to be careful though to clearly explain. Society has attempted to load the word ‘retard’ as an insult. It is not OK to use ‘retard’ as an insult. It should be OK to be considered retarded if one truly is however. Amanda’s strength here is de-clawing the loaded connotations of the word ‘retarded’.

And speaking of de-clawing, look for starring role of Amanda’s cat ;o) . Here’s the video:

Too far – attacks on autistic people

30 Oct

The level of debate continues to sink from the mercury militia. In various places over the web this past week or so, parents who believe vaccines caused their kids autism sunk about as low as you can get. They attacked autistic people – the same ‘sort’ of person their child is. And why? Because they don’t agree with what either they are saying or their parents or saying.

AutismWeb Forums

Over on Autism Web forums, Amanda was vitriolically attacked by two of the less stable members – sashasmom and respect (hilariously ironic username). She was attacked because she essentially suggested that death-threatening angry responses utilised by parents are not a good way to progress. This prompted sashasmom to question her autism and deride her sexuality to the point where the moderator edited part of sashasmom’s post.

It led ‘respect’ to label her input as ‘drivel’.

The hysteria on display here is incredible. If someone says something you disagree with its entirely possible to disagree with the idea and remain respectful. The notion that these two posters (both not autistic) know more about the experience of autism than Amanda as they have implied throughout her tenure on AutismWeb forums is both pathetic and laughable. Their voices are simply echo’s of ex-AutismWeb member Srinath, who called another autistic member a retard.

I personally find it deeply worrying that these people consider themselves part of any autism community.

But of course, however low one person can stoop, we all know another man from New Hampshire who can stoop lower.

John Best at AWARES

John has developed what seems to be an unhealthy interest in my daughter. I find it incredibly disturbing. More so than I can possibly convey in writing. I don’t give a stuff if he or his crowd insult me personally, I’m a big boy – but time after time he has seen fit to abuse my daughter. Who can forget his charming comparison of my daughter to a trained monkey:

My wife bought too many bananas so I’ll send some for your daughter

which came about as a result of me detailing her progress (the crime being of course that she’s progressing without chelation/ALA/megadose vitamins or HBOT).

Well now he’s stooped even lower. This years AWARES conference is well under way. John has apparently changed his stance from last year where he stated that AWARES was a made up conference solely to trap him (John has a little problem with ego and reality) and decided to attend again this year.

This time though he joined up with the username ‘Megan Leitch’ and made numerous posts abusing autistic members of the conference and pushing chelation as the only cure. When I was made aware of this, I contacted the conference administrator and after satisfying himself that what I was saying was true, he deleted all posts from that user and deleted the account.

What sort of utter coward _assumes the identity_ of a six year old autistic girl? I am in two minds at whether to follow up on this legally. I’m not sure what constitutes identity theft in a legal sense but I intend to find out. But of course this goes far beyond identify theft. To anyone with an ounce of morality, posting in the name of a child to further your own agenda is so tasteless that I don’t think there are adjectives to describe this particular act. Assuming the identity of an autistic child because you don’t like the child’s father or what he has to say is…..disturbing….

John has demonstrated moral ambivalence of many occasions, including telephone threats to women:

Lisa; Should I have Tim call you again to teach you some basics about autism that you’re incapable of understanding?

And a general dislike of women, whom he considers less intelligent than men:

Women will never be more intelligent than men although they may be smarter than men who won’t stand up for themselves.

Although it seems his wife came close to acting intelligently until John brow-beat her into submission:

I also have a wife who took two years of prodding before I could begin chelation. I finally started in May. We were also close to divorce…

And John’s approach to parenting his kids, seems to reflect his moral ambivalence to other children:

50mg 0f seroquel has worked for my son since age 5. It takes a while to knock him out but he is always tough to wake up after 8 or 9 hours of sleep. We use benadryl or waldryl(half the cost) once in a while to help knock him out sooner. We have now had two years of sleeping every night after three years of virtually no sleep. Good Luck

Seroquel is an antipsychotic neurole[ptic similar to Risperdal that:

..is indicated for the treatment of acute manic episodes associated with bipolar I disorder and the treatment of schizophrenia.

On Josephs blog post I linked to above, John got into a protracted debate with Jannalou who takes medication for ADD and told her that the medication was causing suicidal thoughts and constipation. Apparently, John has never read the fact sheet on Seroquel which states that it can cause suicidal feelings and constipation. It further states:

The safety and effectiveness of SEROQUEL in pediatric patients have not been established.

No matter how I feel about John, I would _never, ever_ stoop to assuming the identity of his son or making comparisons between his children and animals.

I see John is trying to ‘recruit’ Maria Lujan on her new blog – this is the same person of whom he once said:

I don’t believe Maria Lujan is real, nor do I beleive Not Mercury is real. I think they are just identities that your side conjured up

(Source above).

Thankfully, Maria is far too intelligent to be taken in by a low brow thug like John Best. John however, is not intelligent enough to remember the fact that he abused someone before trying to wheedle his way into their life.

There is something very, very wrong with a person who would assume the identity of a six year old girl. I can’t imagine anyone other than John’s most recent crop of neophytes thinking otherwise. In fact, I don’t event think all of them would like it.

John likes to call people who don’t chelate child abusers. I wouldn’t call John a child abuser but I’ll leave you to formulate your own descriptions of a man who feels no qualms at abusing the identities of children.

46th Skeptics’ Circle – On a mission from God

26 Oct

Its always the same. I volunteer to do something because its a worthy cause or I really like the thing in question – or both – and then I put it off and put it off and end up scrabbling about at the last minute to sort it out.

So, when I volunteered to host this Skeptics Circle three months in advance I knew that this time I wouldn’t need to put it off again and again as this time I had plenty of time to get organised.

Unfortunately, the bit of my brain that reassures me there’s plenty of time is broken and thats why with less than 30 minutes to go I’m scrabbling about getting the bloody thing organised. Getting a spectacular venue at such short notice is tricky. I do have a few contacts though. Which was good. Skeptics’ would be arriving in about 20minutes time demanding in their evidenced-based ways to be plushly seated and fed.

“Hi, Colnel Jack O’Neil please….look I know it exists….oh for…look, just tell him that Kev rang…yeah, I want to use the conference room for a meeting. What? Promoted? Well…OK…is Daniel Jackson there? Smart arse…not as funny as he thinks. No? Shit. OK…what? Teal’c? Big guy, funny looking. Big on hats. Oh forget it.”

Next try.

“Satan? No? Whoops, sorry Gabriel…wrong fast dial number…hahahaha!”

Try again. Press right key this time.

“Lord of Darkness? Heeeeyyy…how’s it going big guy? Yeah, aside from hot…..oh really? Well if it says a thousand years and you signed it I don’t see how you can moan about it feller. Hey, I’m just saying! Look, shut up a minute – you know that favour you owe me?…..Yes you bloody do!….no *you* look – if it wasn’t for me that Bryan Adams record would still be No.1….look, look, stop it….all I want is the big conference room….what? No the one on the Ninth Circle…..whaddya mean ‘booked’? By who? Oh yeah? Well, you tell Tom Cruise from me that….that….hello? Hello? Bugger!”

This was getting slightly annoying.

“Hey Doc! It’s Kev….Leitch. Kev leitch. Kevin Leitch. I was your assistant just before Billy Pip…uh, I mean Rose. Well, thanks! Nice to know I made an impression! How come you don’t remember me? I was the guy who broke the uppy-downy thing in the Tardis engine room. Yeah…ever get it fixed? Well, thats good…uh…listen, I know I kind of wrecked your only viable mode of transport but I was hoping for a favour…? Just one room for a few hours for me and a few pals….what? No no no, nothing like that….well maybe some beer….whaddya mean ‘how big’? It’s a bloody Tardis! Small outside, massive inside…..look, just for an hour and no beer…well thanks for nothing! I always preferred The Master anyway!”

Dammit.

“Hi…Is that The Others? It is? Cool. Can you just kill Charlie? Yeah, the guy from the Lord of the Rings. Yeah, thats it. Bye”

OK, so I get a little sidetracked sometimes. Back to it…and there was only one thing for it…

“Gabriel? Gabe! Hi! yeah, sorry about before….yeah I spoke to him….he’s fine – well, hot – y’know how it is…..no, no, I guess you don’t…erm…listen I need a favour. No from you, not the big guy. No, no, I’ve got nothing against him….yeah, the beard’s a bit much…look, look, listen – I need a conference room. No, no catering Gabe. I haven’t got the touch the big guy has – two loaves and a couple of fish don’t go very bloody far for me. I dunno….Burger King maybe. Oh for…yes, yes, there’s only one King…Jes- I mean, Chri- I mean for goodness sake, he’s really touchy for an all powerful being isn’t he? Ok, no bloody Burger King….I can? Nice one Gabe! Just a couple of hours. Eh?….for the Skeptics Circle…..hello? Hello? Gabe!? Damnation!”

Re-dial.

“Gabe? Don’t put the phone down! Whats wrong with the septic circle? Hmmm? No, no, *septic* circle. What? ‘Skeptic’? Ha! No way – those guys are losers. No, this is the Septic Circle. We discuss, uh, Septic tanks and the latest news regarding all things, er, septic…wounds…umm. Treatment? Oh, umm, laying on of hands mostly…..No – wait! Prayer, I mean! So – can I have the big conference room? Cheers Gabe you always were my favourite!”

Bloody hell. A skeptics circle in heaven. For a minute I thought the paradox might make my head implode or some such thing but then I remembered to just believe in the power of dreams or whatever and everything was fine.

Next problem – how do you get yourself and several skeptical people into Heaven?

Luckily, we have Google these days so I searched for it.

According to this guy what you needed was:

If you ask most people this question, they will say something like, “If you do more good things than bad things, God will probably let you into heaven.” The above thinking will reserve your place in hell. You need FAITH IN THE BLOOD OF JESUS.

Hell was no good – Tom Cruise had booked the only conference room big enough, the short-arse git. So all I needed was to persuade a bunch of Skeptics to have faith in the blood of Jesus. Should be pretty straightforward.

This was getting silly.

Then I remembered that ‘clapping’ song:

Three, six, nine, The goose drank wine, The monkey chewed tobacco on the street car line. The line broke, the monkey got choked And they all went to heaven in a little row boat.

Frankly, I was dubious. What the hell is a ‘street car line’? And ‘choking a monkey’ sounded suspiciously like something my Grandmother told me would make me go blind. I thought it best to stick to the blood of Jesus thing. A _little_ row boat would never hold *all* the skeptics anyway.

Decision made, I was calm and sanguine when the doorbell rang. I could see the shape of a phalanx of Skeptics through the net curtains and hear the sardonic patter of sarcasm as it echoed down the cul-de-sac I lived in. Game on.

“Welcome all,” I gushed, “come in, take a seat, just a few short words from me and we’ll be off to our scheduled meeting point.”

The phalanx trooped in – I spotted a few familiar faces (Diva, Skeptico, DoC and the sharpshooter eyes of Orac met mine for a minute) and a few people I didn’t know who offered a polite introduction as they came in…Dr Charles, Runolfr, Paul….skeptics’ so hardened and long serving that a permanent air of critical irony came off them like a deeply sarcastic mist.

“OK, everyone in? Good. So, a bit of a change of pace this time….I’ve arranged for us to meet in Heaven.”

Silence. And then Orac asked: “You want us to hold a Skeptics’ Circle in a place that – lets be honest – doesn’t exactly lend itself to critical thinking.”

I nodded. “And to get there, according to some guy on a website, all we need to do is all believe in the blood of Jesus.”

“Seriously?” Said a Skeptic near the back.

I nodded again. “Easy, right?”

Someone laughed nervously (and yet logically). Orac closed his eyes and rubbed his brow. “OK, what do we need to do?”

With a confidence I really didn’t feel, I explained that if each of us expressed our carefully examined and well researched opinion that there was such a thing as the blood of Jesus then we would all be instantly transported to the opulence of the conference room in Heaven I booked with Gabriel awhile before.

“Seriously?” Said all the Skeptics.

“Well, yeah….”

Orac muttered a fairly appalling word and then said, “Right, OK, lets give it a go.” He cleared his throat nervously. “All together…..”

It was one of the greatest moments of my life. Persuading a bunch of Skeptics’ to affirm their belief in the blood of Jesus in order to attend a conference in Heaven. Admittedly, they didn’t look very happy about it, but it worked. Skeptics’ in Heaven. Marvellous.

Once the assembled Skeptics’ had recovered from the shock of being in a place they didn’t believe existed (I explained that Chaos Theory would probably throw up a new type of science at some unspecified point in time called Paradox Theory in which events like this would be commonplace) we settled down to business.

Dr Charles stood up (after he’d finished poking the table with unbelieving pencil prods to establish it was really there) and told the assembled Skeptics’ about the evils of chain letters and how one chain letter in particular had affected his practice in terms of some of his patients feeling the chain letter in question was an excellent diagnostic tool for ovarian cancer. We were off to a good start.

Next, Lord Runolfr told the assembled ranks of Skeptics about how Reiki was not actually ‘spiritually guided life force energy’ at all – an announcement that caused a rumble of appreciation to echo around the room. As an encore, Lord Runolfr explained to everyone just how bad science was abused in Hollywood.

The brilliance of a thousand tiara’s announced the proclamations of Autism Diva. She explained to the assembled ranks that for some institutions, ‘distinguished’ seemed to be a relative term, including people who think Gaia is suffering and that’s why we have autism, or that autism is actually demonic possession.

“I actaully wouldn’t use the word ‘demon’ around here if I were you”, I muttered to Diva as she sat down but she simply threw a spare tiara at me.

Dad of Cameron rose and told the assembled skeptics that despite the assembled scientific might of RFK Jr, jouranlist David Kirby and various other liggers – the mercury-in-vaccines-causes-autism hypothesis was still dead as the rate of autism was still rising even after a few years of mercury-free vaccines.

As DoC sat back down, I remembered who was next up. I rose quickly.

“Um, next up is…uh….Hell’s Handmaiden….” I said, ducking in anticipation of a thunderbolt from our host…..nothing….cool.

The Maiden stood and expounded thoroughly on the formula used by the more credulous examples of creationists to be found littering the web. Was it me or was the sky of Heaven darkening outside?….oh dear….how embarrassing it would be if a bunch of creationist-rejecting skeptics were smitten by a thunderbolt from God.

Luckily, Dr David decided to inject a bit of class into proceedings and started to recite a bit of poetry called I.D. On the Stand. Hmmm….maybe Heaven really hadn’t been the best venue for a Skeptics Circle after all….I shifted uncomfortably as Dr David recited:

…Creationism in the schools had died a legal death…And now as Rothschild rose, Gishville IDers held their breath.

I struggled to recall exactly what God had done to non-believers in the Old Testament. I couldn’t remember but it probably involved boiling oil and pointy sticks and squidgy parts of peoples anatomies. Note to self: next time, if you _must_ do this in a religious setting, try Bhuddist Nirvana. They’re a lot less wrathful and vengeful.

I popped a couple of Rennie’s and munched fretfully as Stuart Coleman stood and asked the assembled skeptics if religion benefited society – and just to really get my stomach acid rising, Stuart went on to comment on the need to create ‘ghosts’ from random shapes.

My indigestion eased somewhat as Archy recounted his look at some incredibly lazy science reporting centered around yet another Atlantis theory. Damn you and your poor attempts at fiction Plato! But at least we were moving away from subject matter likely to cause annoyance in our all-knowing host.

Skeptico stood and pointed out the tired old repetitious fallacies that ID proponents wheel out at the vaguest hint of patterns in nature. Veering close to holy criticism I grant you, but Skeptico took pity on my nerves with lots of fascinating references to the SETI project. He then when on to make the Circle laugh by recounting the time a few days ago when we were all bathed in an ultraviolet pulse beam from higher dimensions. An event so earth-shaking that had Skeptico not told me about it, I don’t think I would ever had known it had happened. Certainly the ‘jump-start in manifesting the things we would like to cocreate in our own lives’ must’ve passed me by.

Next up, the guys from Humbug Online told everyone about some of the best Shonky stuff around including bio-available Oxygen and the Magnetic Laundry System, thus establishing that Aussie punters are just as credulous as Yanks and Poms.

Interverbal rose and clearly and concisely decimated the arguments of some ‘autism epidemic’ apologists by expanding on DoC’s earlier points to show that no matter how one attempted to twist the stats, the CDDS is never going to be a good source of data for autism prevalence.

Orac slapped the table to show his appreciation of Interverbal’s clinical smackdown and then went on to tell the assembled skeptics just exactly what the problem with Deepak Chopra was, coining the marvellous phrase ‘Choprawoo’ into the bargain.

Once the Skeptics had all finished giggling at the phrase ‘Choprawoo’ (personally I doubted I’d ever get tired of it), Seth from a Whiskey Before Breakfast staggered unsteadily to his feet and slurred his way through not one, but two pieces on why magical thinking was bad for people and how magical thinking did not equate to skeptical thinking.

And talking of magical thinking, EoR from The Second Sight told everybody that nothing – quite literally _nothing_ – worked like Homeopathy.

Martin from Salto Sobrius rose next and explained how puzzled he was when people said they weren’t religious but were spiritual and how it seemed to him that the word meant nothing and anything….verging on dangerous ground again – didn’t these skeptics know I had high blood pressure? Luckily my chelationist was waiting for me in his custom 15 door limo-cum-consulting rooms-cum-hyperbaric chamber after the Circle meet up was finished so I knew I’d be all right.

P cleared his throat and proceeded to remind the assembled skeptics about the Strawman fallacy and what a first class example of one he’d come across recently whilst attempting to debate a Christian. ‘Thanks, P’ I thought to myself as I popped another brace of Rennie’s.

Bronze Dog also decided to my indigestion by talking about the appeal to ridicule gambit and, much to my horror, directly addressed the idea of ‘God’ as doggerel…..a definite rumble of celestial thunder sounded outside the door and the room briefly shook. This was going pear shaped. Fast. I needed a safe pair of hands…

Tara stood and told the circle about The failure of alternative medicine – a subject I was profoundly interested in _and_ relieved to be talking about.

Tara indicated she’d finished.

I stood up. “That’s it – everyone’s presented. I’ll close by saying that

a) The Next Circle is at Polite Company on November 9th

b) By way of a party favour, I have this modest bit of fun for you all and

c) I have no idea how to get out of Heaven.”

46th Skeptics’ Circle – Last call

25 Oct

The Forty Sixth Skeptics Circle will be here in 24 hours time….last call for blog entries is 25th oct 10pm GMT.

TV might cause autism?

24 Oct

The blogosphere and certain Yahoo groups are _outraged_ by the idea that a study from Cornell University alleges that TV might have a role to play in autism.

The idea is pretty stupid. Basically, the Cornell guys are saying that because there’s autism in places where there’s lots of rainfall and because when its raining kids watch TV that autism has a link to TV. In fact, that piece of thinking goes beyond ‘pretty stupid’ and inhabits the landscape of ‘hilariously inept’. To give them their due they stop short of claiming a causative connection but they claim its a major piece of the puzzle.

We are not saying we have found the cause of autism, we’re saying we have found a critical piece of evidence

Guys – you _so_ haven’t.

Anyway, the merits of this study aren’t the focus of this post (hilarious as the study is, I couldn’t do better than Joseph’s takedown ). What’s interested me over the last few days are the outraged splutterings coming from a certain section of the autism community.

As they have dumbed down this society over the past generation and people took the history of science courses as opposed to pharmacology/pharmacology, all sorts of insane theories and mischief can emanate from a population of social/mental dingbats whose primary source of production is television shows as opposed to hard goods.

H Coleman, Evidence of Harm Yahoo Group.

First and foremost this is a perfect example of what happens when economists that know nothing of a medical condition try to find some statistical relationship between their beloved data and a condition.

The authors of this study made no effort to explain how TV watching could trigger chronic intestinal inflammation, toxic levels of heavy metals, inability to sleep, hard and bloated abdomens, food allergies or intolerances, and much more.

Kendra Pettengill, EoH Yahoo regular

I could go on but I think you get the idea. In a nutshell, the mercury militia are _not happy_ that TV has been linked to autism. Most of them are not happy because the study is totally ridiculous. On that I agree with them. Some of them are unhappy because they think its a study trying to put the blame back on parents in a bettlehiem-esqe manner. I think thats an overreaction but I can see what they’re saying.

However, a lot are unhappy because it refuses to recognise mercury as being ‘in the mix’. Thats as hilarious, predictable and sad as the study in question.

But I’m _still_ not making my point. My point is this. OK, this TV study is junk but here’s a question for you my mercury obsessed cherubs – what scientific merit does your vaccine/thiomersal/MMR theory have that elevates it above this TV study? I’m going to go right ahead and assert that the vaccine theory has no more causative evidence behind it than this joke of a study.

Both hypothesis have, at their core, an implausible correlation with a couple of self-congratulatory scientists dabbling with numbers that they want to twist to fit their theories. And that’s it. _No_ clinical evidence, no decent epidemiological evidence and a mainstream science community sniggering openly. What this TV theory needs is a bunch of credulous people to form pretentious sounding groups – SAFE TVINDS maybe or Notelly.org, then they can part-fund some crappy science to support the original crappy science, write books, organise marches on Hollywood instead of the CDC, get harvested by a whole new crop of quacks etc etc.

In all seriousness: mercury boys and girls – how you see the TV theory (a mixture of borderline tolerable amusement and offence to science) is exactly how the rest of the world see’s you.

What has autism ever done for us?

23 Oct

I was reading this article the other day where a therapist was detailing her attempts to reconcile a couple on the verge of splitting up due to the horror/abyss/hell/tsunami of autism. Its pretty depressing reading.

It’s a common refrain – how autism has affected someone’s life. Usually there’s a long list of how finances, relationships and life generally have all suffered since the diagnosis entered their lives.

To me, its all about how you approach the issues. Are you someone who sees the glass as half empty or half full? These were definitely half empty people.

I’d like to describe how autism has affected my life.

My wife and I will have been married 10 years next year. Something I consider quite an accomplishment in this day and age. We’ve had a lot of difficult times and rowed often. When Meg was diagnosed we were stunned, angry, hurting. However as we came to accept, we started talking to each other more. We started to back each other up more. We started supporting each other better. Autism didn’t only bring us a beautiful little girl, it brought us each other in a new way.

Naomi and I used to be members of a parent-oriented autism forum. There were a few good people there and a few drama queens. One couple used to complain that they now only managed to get away three or four times a year with each other for ‘little weekend breaks to Prague’. Well, boo-hoo. Poor them. I heard later that the husband of this couple had a nervous breakdown due to the stress.

Right. I hear less than five weekend breaks to Prague per year can do that to a man.

Please note: I’m not belittling anyone who genuinely has had a nervous breakdown. This guy whoever, was (is?) a primadonna without equal.

The last holiday Naomi and I had was our honeymoon. And I couldn’t possibly care less. Naomi has had a couple of breaks with the kids and her parents whilst I stayed here and worked as we couldn’t afford not to be earning. Whenever I hear biomed parents crying over the cost of all that TD-DMPS I roll my eyes and think of that old adage about a fool and their money.

Naomi and I watch DVD’s together, we talk together. We spend hours chatting after the kids are asleep. When we feel like celebrating, Megan and I walk into town, I buy some nice grub, a bottle of wine or three and after the kids are asleep (assuming they go to sleep) we put on nice clothes and have our nice meal with the TV off and the lights down. If Meg’s having a bad night, we take it in turns, a few hours each, to sit with her.

If Anthony’s over for the weekend then we sometimes play Monopoly or cards or we play along with Who Wants to be a Millionaire. I watch the American wrestling with Anthony on TV (possibly the funniest, campest thing on TV).

Because of autism, we found our family.

We have less money than we used to. I can’t pursue the heady heights of my career. Most web developers of my age and experience are head of design studios or successful freelancers. I couldn’t possibly care less. We have enough money to keep a roof over our heads, food on the table, clothes on our backs, the odd DVD collection (Prison Break Season One currently) in the player and lots of time. Because I’m not scaling the corporate ladder, I don’t have to stay late at work. I can get home before the kids go to bed. I can help my wife tidy up. Money can’t buy me the time I get to sit besides the bath as my two girls splash around in it before bedtime. Whilst my friends organise their working lives via their mobile phones, my wife’s sending me stills and video’s of the funny/cute things my kids are up to on mine.

Autism has made me more patient, calmer, confident, determined and considerate. I think I’m a better person and a better husband and father since Megan was diagnosed. So, to echo John Cleese’s classic ‘All right, but apart from the sanitation, the medicine, education, wine, public order, irrigation, roads, a fresh water system, and public health, what have the Romans ever done for us?’ I’d ask ‘Alright, but apart from a great family life, strong bonds with my wife, being a better husband, having the time to be a good dad and generally enjoying life, what has autism ever done for us?’

Message to all my readers

19 Oct

Some of you are tech-savvy, some of you less so. Thats fine :o)

What i want to tell each and every one of you about today is that Microsoft have made a new version of Internet Explorer ready and available. If you are using Windows XP you can download Internet Explorer 7 right now.

Or, if you’d rather wait, IE7 will also be coming down as an Automatic Update as part of Windows Update (the little yellow balloon in the right bottom corner that tells you updates are ready every now and then) at some point before November 1st.

I strongly urge you all to download and install this. Most of my site visitors are using Internet Explorer already (if you look at the last entry in the ‘Help’ menu of your browser and it says ‘About Internet Explorer’ then you are) so this upgrade will be pretty painless. You will download, re-install, reboot your PC and next time you use the web you’ll be using IE7. It looks a little different but all your Home page settings and Favorites are just where you left them. It also has some sparkly new features such as tabbed browsing and built in RSS feeds-reading.

Even if you don’t use IE regularly, I still recommend downloading and installing. It won’t set itself as the default browser if you use Firefox or Opera but it will mean if you ever have occassion to use IE, you’ll be using IE7.

So why do I care what browser you use?

Well, firstly, IE7 is a much more _secure_ browser. It makes surfing the web much safer than using older version of IE.

Secondly, it makes _my_ life much easier. Older versions of IE have very very bad rendering of websites, meaning that the code I and my colleagues use to build web sites doesn’t work as well as it should in IE. By switching to IE7 you’ll be helping every web developer on the face of the planet – doesn’t that give you a warm fuzzy glow? The quicker people switch to IE7, the quicker we can ditch support for old, buggy versions of IE.

Thanks for listening – once again, you can download it now or wait and get it via Automatic Update. I hope you do :o)

Autism as a medical construct

17 Oct

First off – what is acceptance?

I’ve heard tell that in terms of autism, acceptance equals resignation. But this defeatist attitude came from someone who was a self-confessed anti-vaccinationista. The truth is that acceptance is hard work. It entails a massive learning curve. It requires a heavy time investment. It entails letting go of some dearly held beliefs in favour of cold hard science. It means being realistic _and_ optimistic.

In a recent email exchange I had with a very smart guy, he said to me:

Reaching parents through the Acceptance approach how to distinguish what needs to change in society vs. what actually makes sense to attempt to change at the individual’s level, and helping them redirect all that energy towards both goals in appropriate balance, is the long-term solution.

Because you see (gasp!) parents who follow an acceptance based approach do not see their kids as utterly perfect with no need for any intervention whatsoever. That is not realistic. It is not parenting. That is abandoning one’s child to the vagaries of fate.

My daughter is far from perfect (in that developmental sense of the word). She needs educating. She’s being educated. She needs to develop life skills. We are developing life skills. Sometimes she’s genuinely naughty. When she is she’s punished. She’s not naughty due to her autism. She’s naughty because she’s six and six year olds have a capacity for naughtiness.

However, we also see the need to try and bring about development in society as well as development in our children. Autism is still seen primarily as something that primarily affects children. It isn’t. Autism is poorly understood on many levels. Educational resources for autistic children and adults are very bad in the UK and not great in the US. The idea of a spectrum of autism is still to gain widespread acceptance. The idea that the word ‘spectrum’ might not be the right concept has barely registered.

So – yes, autistic children need their parents input. Society also needs their parents input. Society also needs autistic people’s input.

My email correspondent went on to ask about how we could get people – parents new to diagnosis – to work for their children and also in society.

My answer was that education was key. How to reach parents _before_ diagnosis. Why?

The very first time ‘autism’ is used to a parent it comes from a diagnosing doctor. Because autism is still poorly understood – even by Doctors – the diagnostician may tell a parent that their child will need institutionalising, sometimes drugging, sometimes that they have no functional future. I don’t like John Best Jr very much, but the first time I heard that his diagnosing doctor had called his son a vegetable, I felt pity for him and his son. How could a doctor be so obtuse?

So when a parent hears that (and it still happens an awful lot) 9 times out of 10 a voice in their head adds on ….”unless you can cure them”…. and thus through a combo of diagnostician and the ‘hope’ of cure, autism as a medical disorder is the predominant way a parent becomes familiar with autism.

Very rarely does a parent have the strength after hearing that to keep an open mind. Find the cause, find the cure. Do not be autistic, do not collect £200. What we heard when Meg was diagnosed wasn’t anywhere near that bad and yet that’s the path we went down.

And what happens when a cause is supposedly found? This is the crucial time. This is the point a parent can become an autism advocate or an advocate for their autistic children. For a lot of people, vaccines are the cause. MMR or thiomersal based. Or mold. Or french fries. Or aliens. Or whatever. You can stop and say ‘my god, I can’t believe this’ and be swallowed whole by what I can only describe as maelstrom of anger, blame, transferred guilt and panic. SoapboxMom wrote a good post about the self-destructive side of anger and how it can turn on you and consume you. There are a few people I can think of who are very close to that point.

I’m going to quote from something yet to be published. I’ll be writing more about it in a few months but for now, this passage sums up why I think a lot of parents are angry.

I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children. We could eliminate the toxins, hold big corporations accountable, do something to reverse the trend. If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.

Real solutions. How do we as a society want to treat autistic people? That question needs a solution. What is the best way to help an autistic child feel accepted, to nurture their talents and address their needs? That needs a solution. What is the best way to help an autistic child become an autistic adult with a feeling of self worth? That needs a solution. The cause of these issues didn’t originate from the barrel of a syringe and the solutions won’t come from blaming people and conspiracy theories. It won’t come from the total medicalisation of autism.

Maybe the solution might come from people who are autistic? Maybe if we listen to them, we can hear about what helped them. What was no good. What hindered them. What they care about as individuals _and_ as a particular group of people.

And maybe there are some truths that are unpalatable which must be faced.

I believe that science progresses no matter what. For good or bad, if a scientist wants to answer a question, then they will find a way to answer it or add to the body of knowledge so a like minded scientist can answer it in the future. Science has brought us the internet and nuclear bombs. Non-invasive surgery and landmines. Streetlights and the AK-47. At some point, it will bring us a genetic test for autism. I believe it is inevitable and that no matter how I might personally feel about it, or how much I might worry about how it is employed, it will happen.

I think that for things like this that protesting the development of such a thing is futile. We need to turn what could be negativity into a way to employ this. Our challenge should be to help people realise that autism doesn’t have to be something that requires a termination. Maybe a genetic test can be seen as a window of opportunity to educate parents who know nothing about autism into potential parents of autistic children forearmed and ready to work with their children and use what anger they may have against a system that is not conducive to accessibility.

MMR and statistics and science

16 Oct

Measles Mumps Rubella Timeline

Now that we have a couple of clinical papers refuting the findings of Wakefield, Krigsman, O’Leary et al – and not only refuting them but even showing exactly how they screwed up – I thought a retrospective look at the data concerning the fall in uptake of the MMR vaccine corresponds to the latest data on prevalence for autism in the UK and what it might mean for the MMR theory.

This table shows vaccination uptake rates across England. I’m going to highlight the years 97/98 – 04/05. An eight year period that starts when the original Wakefield paper was released and ends with the latest set of known data from last year. I’ll also be ignoring everything except MMR data.

Year Uptake percentage
2nd birthday in 1997/98 91%
2nd birthday in 1998/99 88%
2nd birthday in 1999/00 88%
2nd birthday in 2000/01 87%
2nd birthday in 2001/02 84%
2nd birthday in 2002/03 82%
2nd birthday in 2003/04 80%
2nd birthday in 2004/05 81%

So we can see that MMR uptake _dropped by a factor of 10%_ in eight years. Thats a pretty sobering stat.

When we look at how many live births there have been between 1998 – 2005 (inc) we see that there have been a total of 4,959,995. Ten percent of _that_ figure means that 496,000 have not (for whatever reason) received the MMR. And if prevalence (as established by Baird et al) really is 1 in 100 then we should expect to get 49,599 diagnosis of autism since 1998 (1% of live birth rate).

But, if MMR proponents are right, then we _should not_ have 49,599.autism diagnosis. We should have 45,036 (49,995 (dx) – 4,959 (10% of dx)).

To put it another way – if MMR uptake has fallen by 10% over the last 8 years, then there should’ve been a corresponding 10% fall in autism diagnosis. Has there been?

Obviously not. Bill Welsh of the Autism Treatment Trust certainly doesn’t think so:

It will come as no surprise to parents throughout Scotland that there has been a “sharp increase in autism” (July 14). The diagnosis of this devastating childhood developmental condition has increased to such an extent since 1990 that many, many families are now affected. It is very worrying that it has taken well over 10 years for the authorities at last to recognise that an autism epidemic has been sweeping the UK.

And lets not forget Chakrabarti and Fombonne who also found a high but stable prevalence of autism in the UK. Both things cannot be true. If MMR causes autism then as MMR uptake has dropped off the rate of autism cannot possibly have remained the same, unless we want to try and find a substitute that not only acts in the exact same way as MMR but also slots exactly into the numerical data, rising as MMR falls. Possible but pretty unlikely.

Megan’s Private Blog Has A New Author

15 Oct

For those people who have access to Megan’s private blog, you’ll know that I’ve failed to keep it as up to date as I should. Time pressures and all that.

Anyway – that blog now has a new author – my wife :o)

Naomi and Megan hugging

The access codes are exactly the same as they were before but if anyone has lost/forgot them then just let me know and I’ll mail them to you again and if anyone wants to join that private list, feel free to ask and I’ll post you the details you’ll need to access it.

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