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Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

The arrogance of the Autism Treatment Trust

26 Nov

Earlier this week, Anthony wrote about the Autism Treatment Trust and their arrogance in assuming that association with a Nobel prize winner meant their untested therapies were suddenly OK to use.

Today I discovered that their arrogance extended to ignoring the law in the services they offer.

According to their website:

…if you are in need of respite, please contact us and send us a short outline of what your needs are.

The provision of Respite care in Scotland is taken very seriously by the government. So seriously that it set up something called the Care Commission. The Care Commission is there to:

The Regulation of Care (Scotland) Act 2001 (the Act) established a system of care regulation in Scotland. The Act‘s purpose is to provide greater protection for people in need of care services. We are required by the Act to regulate certain care services.

with one of those service being _’Short breaks and respite care services’_ .

One of the great services on the Care Commission website is the ability to check whether a service is registered with them or not. I invite you to do it now – why not check to see if the Autism Treatment Trust is registered?

In fact, I’ll save you some time. They’re not.

Before I blogged this I wanted to be absolutely sure of two things:

1) That the Autism Treatment Trust were definitely not registered with the Care Commission
2) That the Autism Treatment Trust were definitely offering respite.

I tackled the second point first. As members of the Autism Treatment Trust know who I am I decided to assume a false identity and email them. I asked Autism Treatment Trust if they could offer me respite care. The response was:

Thank you for your interest in the Autism Treatment Trust. We have respite care by some of our professional volunteers. This is free of charge, however you would have to cover the travel costs of the volunteer. Some of the respite is offered at the clinic after school or on a Saturday.

So that took care of that – Autism Treatment Trust were definitely offering respite.

To tackle the first point I contacted the Care Commission and asked them if the Autism Treatment Trust were registered with them, as they must be by law. They were not.

Autism Treatment Trust are flouting the law in Scotland. As a autism parent I went on to report them to the Care Commission. The Duty Officer I spoke to was very interested and confirmed that Autism Treatment Trust were definitely breaking the law and that steps would be taken. These steps would include an investigation of Autism Treatment Trust and the forced cessation of offering respite care.

UPDATE

I recieved this email from the Care Commission earlier:

Following your enquiry regarding Autism Treatment Trust I have spoke with the organisation’s President and a doctor working in the clinic. They have confirmed that the respte on offer is where a volunteer (Disclosure Scotland checked) provides activities in the young person’s home while the parent is in the home. The volunteer does not carry out any personal care or administration of medication. Given these circumstances the organisation would not be required to register as a care service.

I have advised them that if they develop their respite to enable the parent to leave the home then they would need to apply to the Care Commission for registration

My response

Dear ******,

That is not what the service was described to me as. The email I received clearly states:

_”Some of the respite is offered at the clinic after school or on a Saturday.”_

Are parents present during this activity?

Update No.2

The relavent page on the ATT website has now changed from its content this morning. This morning the content was as this screenshot (click for bigger):

The content now reads (click for bigger):