www.mychoicepad.com

This makes me more than angry. This makes me fucking furious.

It’s a second-rate App. It has a HORRIBLE user interface. It is difficult for children with autism to use. It causes more problems than it solves.

And you have to pay extra for the full vocabulary.

And what in the name of all that is sacred does “Be heard. Be cool. Be you.” mean to someone with a communication disability?

They are promoting an AAC intervention for people with disabilities with a fucking ADVERTISING SLOGAN?

And then they claim to know what they are talking about?

And apparently I’m the insane one!

But.

Makaton is the ‘standard’ SEN deaf-sign vocab, so everyone has to buy it.

He is very High Functioning with very severe autism. He qualified for Gifted & Talented but needs help asking for food.

Have you got a box for that on your fancy form?

Every now and then we are privileged to witness an act of incredible stupidity. Today, ASDFriendly provided a first class example.

Little Nutter has left his toy rats at holiday club. He found out this evening when he wanted to watch his DVD of Ratatouille again.

He is “So, so sad!”

And now he is playing his “sad” emotional playlist on his DVD ripper software on his computer.

Penguin has moved in and made friends with Wallace; Gromit has packed his belongings into a handkerchief on a stick and moved out. Nemo has disappeared and Marlin is looking for his son. Andy has abandoned Woody. The chickens have learned their fate and Rocky, their last hope, has abandoned them.

Every sad scene from every DVD he owns has been ripped and gathered in a folder. He is playing through them all, one after another, and whining to himself: “You let me down!” “I want my rats back!” and “I’m so, so sad.”

Without it, he doesn’t know how to be sad.

I’m not sure when the General Medical Council’s final verdict on Andrew Wakefield is due, but it can’t be long now. The interim verdict is enough to be going on with, though, having said on 28th January this year that he “failed in his duties as a responsible consultant,” and acted with “callous disregard for the distress and pain the children might suffer.”

He still claims that the issue at stake is not whether the MMR causes autism, but whether the GMC can tolerate dissent: “I scare the establishment because I care and I am diligent.”

Since Wakefield’s eruption into public life in February 1998, ten of the twelve co-authors of his study into the MMR have withdrawn and retracted from the paper. The GMC ruled that he had acted “dishonestly and irresponsibly” during the affair.

The Lancet has retracted the publication and taken the unusual step of removing it from their archives.

Evidence has been uncovered by Brian Deer and given to the GMC to show that biopsy results of the children at the centre of the study were altered. The Royal Free Hospital pathology service found bowel disease was “a possibility” in just one sample; Wakefield’s paper claimed that eleven out of the twelve had bowel disease.

And evidence that could not be published until 2007 as it was sub judice has shown that the raw data Wakefield used to show the presence of MMR vaccine strain measles virus had crossed the blood-brain barrier in the children in the study was unreliable as the laboratory Wakefield used contaminated the samples.

Meanwhile, study after study has been published, each one adding to the weight of evidence that there is no credible link between the MMR and autism.

Autistic Enterocolitis does not exist.

I’ve just been told about another autism treatment on sale in the USA: ACE Pathways Investigation Study.

Make sure you aren’t eating or drinking while you read this – it is absolutely inspired. Apparently it claims that autism is caused by a “stealth virus” – presumably a smaller version of the F117 Nighthawk.

This treatment is non-invasive and very effective. It is best done when your child is sleeping. It involves putting a clear film againts the body to protect against the dye that is used. Surgical towels are soaked in a special dye and placed against the film. A special epione spray is then sprayed on the towels and a UV light shone on it for about one hour. We have not started the treatment yet due to some issues with my twins. We are most likely starting in the next few weeks. Here is a link to the study. Read some of the results posted by parents on here. It is amazing how well this is working. I have seen the results myself. NO NOT pass this up, it is the real thing folks!!!!! I believe that this will eventually become stanard treatment for children with autism.

If anyone is in doubt about the motives and true nature of ACE Pathways Investigation Study, this disclaimer should reassure them:

NO REFUND POLICY:

Thank you to all who have participated in the study. For those who are still waiting to begin we ask that you remain patient. We have been using smaller control groups as the study moves forward. If you have voluntarily withdrawn from the study early, you will not receive a refund. The NO REFUND policy was clearly stated in several places and ultimately on the invoice to which you agreed to pay. “NO REFUNDS IN PART OR IN WHOLE”. These terms were accepted and agreed to once payment was made and is a legally binding agreement. The management of the study is handled by a “third party”. Dr. W John Martin is not responsible for any policies set forth by the company nor has any ties to the management company. We will be strictly enforcing the no refund policy. If you wish to continue to wait you will be provided material and we will fulfill our obligation to you. This may take some time. This is a medical study and must move slowly and carefully. We are working hard to ensure the treatment will be effective for both you and your family. Thank you for your understanding and patience.

So: does it cost money? Yes.

Does it guarantee results? No – it’s still only a study.

Is it safe? No – the Canadian FDA and health Canada are actively monitoring this study, and it has been officially stopped in Canada.

Don’t you just love it?

He’s still blustering on, denying this and claiming that, and insisting that he did it all for the children, his patients.

That claim, however, is not the ultimate appeal to moral authority. It is a dare, a challenge to present a case whereby you believe a child should be sacrificed for a greater good. And it is used by people who use their opinion of a child’s best interest to justify their own moral failings and abuses.

In Wakefield’s case, he uses it to justify his invasive procedures that were conducted against the advice of his own ethics committee, justify his own lies that damaged the reputation of the MMR in order to promote the single vaccines he was paid to promote, and justify his support for an anti-vaccine industry that has made him very, very rich.

The fact of the matter is that the causes of autism are not known, and there is no cure. There are treatments that can help, but I promise you that anyone who charges you for one of these treatments is profiteering. You will get a treatment every bit as good, proven scientifically to be every bit as effective, for free here in the UK.

To me, the crime of Wakefield is nothing to do with him personally, or what he has done as an individual.

The crime is everything he stands for – the whole parasitical industry of quacks, snake-oil salesmen, bogus cure and treatment centres, that preys on the despair and desperation of families torn apart by this heartbreaking, debilitating and incredibly disabling condition.

It’s not just Wakefield in the dock. It’s everyone who ever made a promise to a family in exchange for their cash.

At the risk of starting a flame war…

Get a life, guys! Get a life!

(Comments are filtered. Trolling will not be approved. Constructive criticism will.)

According to a Daily Mail report this week, computer game addicts have been warned that they could end up behaving like autism sufferers.

What do they mean? Playing too many games can cause people to present the DSM IV Diagnostic Criteria for autism spectrum disorders? No, surprisingly, they don’t.

They mean that people who spend their entire lives on computer games and not socially interacting are “more likely they were to display personality traits such as low self-esteem, introverted behaviour, worrying and anxiety,” characteristics (note that, Dear Reader, these are characteristics and not presented signs or symptoms) “commonly found in Asperger’s syndrome, a form of autism where sufferers have difficulties in forming relationships, social interaction and communication.”

The fact that these are also common characteristics of post natal depression, bereavement, alcoholism, drug addiction and post traumatic stress disorder are obviously irrelevant, because your average Daily Mail hack isn’t interested in vague, inspecific things like “the truth” or “our current limited understanding of the facts.” Much better to scream a sensationalist headline that demeans everyone concerned.

The truth is that the pursuit of all unsociable activities produces unsociable traits in the person involved – including journalism (anyone for a little bit of classic Greek philosophy? Just because it is ancient doesn’t mean it is wrong.) If you spend all your time doing something that is inherently antisocial then you will become antisocial.

The difference with autism is that it is not a learned trait – it is a disability. Saying that people who “learn” to be antisocial are just like those born with autism is just plain ignorant.

knowl·edge (nlj) n.

1 information and skills acquired through experience or education.
2 the sum of what is known.
3 awareness or familiarity gained by experience of a fact or situation

in·for·ma·tion (nfr-mshn) n.

1 facts or knowledge provided or learned.
2 what is conveyed or represented by a particular sequence of symbols, impulses, etc.
(Definitions from the Oxford English Dictionary)

I’ve just read a blogger’s guide to the history of the MMR/Autism debate, and found it to be a very informative example of the difference between fact and opinion. Or, more accurately, the vast gulf between the perception of knowing stuff and the ability to understand it.

It can be quite possible to produce great tomes on topics with enormous emotional and ethical baggage attached, yet demonstrate a complete lack of understanding of the subject in the process – and still attempt to claim moral and intellectual authority.

And this, I think, is the nugget of truth at the heart of many medical controversies – the MMR/Autism debate only being a typical, angry example.

I don’t deny that there are many advocates in these debates who, in spite of their complete comprehension of the issues involved, are exercising judgement without any reference to a moral compass whatsoever. In fact, I find that they poetically balance out the people on the other side of the debate who seem to be all moral compass and no understanding. On the one hand is an objective analysis with no subjective sensitivity whatsoever, and on the other, a knee-jerk reaction with no analysis.

It leaves the middle ground free for sensible people to join the debate. Just ignore the lunatics on the fringe.