15 Nov 2013, 6:52 pm
I've been reading a lot of bad things about 'Autism Speaks' and TBH I'm horrified that this is the biggest 'voice' for autism. And today I just became aware of the JRC centre, and the electric shock therapy, which is barbaric enough, but to find out they are being promoted by 'Autism Speaks' is beyond comprehension 
If this happened here in the UK they would most likely be prosecuted for child abuse and sent to prison! As I just said on another thread, I thank god I don't live in America!
Anyway, just for comparison and contrast I thought you might like to have a look at the website for the NAS (National Autistic Society), which is the UK's biggest Autism charity
http://www.autism.org.ukNAS website
Not everyone over here likes the NAS, and they are not perfect for sure, but compared to Autism Speaks they are a paragon of virtue!
Where Autism speaks talks about horrendous epidemics of 'missing children' as if they were nobodies. And how their parents as poor bullied victims who need their children cured by any means available. The NAS slogan is "accept difference, not indifference", i.e. accept autistic people for who they are and help them.
Unlike the Autism Speaks 'eugenics' research, the NAS spends its research budget on developing better and more humane / effective therapies and education for ASD children.
The NAS also spends a good portion of its budget on helping people with therapies, counselling, and practical services. They have seven specialist schools throughout the country and provide outreach services for many schools in the UK. They help with benefits advice, housing assistance, and loads of other things I can't be bothered to look up for now 
A good example of the huge difference between the NAS and AS is the NAS early bird programme, which as a parent of an autistic son (in addition to being ASD myself) I have just completed. This is a ten week course on parenting and schooling Autistic children developed by the NAS. It is primarily aimed at parents, but they like the child's LSA (learning support assistant) to attend too so that they know what they are supposed to be doing at school.
It works on the basis that you cannot stop a child from being autistic, and in many cases it would be cruel and counterproductive to do so. And also on the premise that teaching / parenting methods that work for 'NT' children don't really work so well on ASD children. So you have to learn how an autistic child thinks and feels and tailor what you do to get results without causing undue distress to the ASD child.
The first three weeks consists of learning why ASD kids have meltdowns or become reluctant to do things, exploring the underlying sensory issues and difficulties in understanding / communication. There is then a home visit to look at those issues on a child by child basis in their own environment, looking at individual problem areas and possible stress triggers.
Then they look at ways to redirect problem behaviours in a (hopefully) stress free way. Instead of simply punishing a child for supposedly 'unacceptable' behaviour, the course teaches parents to find alternative 'autism friendly' ways of redirecting behaviour. It also taught us to question our preconceptions of what 'acceptable behaviour' should actually be for an ASD child. Stimming and being slow to respond were classed as underlying autistic traits for example, and not bad behaviour.
What we definitely didn't learn was the ABA stuff like "Quiet Hands", holding a child's hands down when they need to be moving is considered cruel and unnecessary. Instead we were taught to accept that the child is just trying to cope (and in some cases to communicate), and if necessary get the child to find a less distracting stim (and then only if it was really distracting other kids in school, and was therefore disruptive). Of course that doesn't mean we were expected to let the kids get their own way, just that it makes life easier for all if there is a less stressful way of dealing with problem behaviour.
Other things that were covered were how to make the environment conducive to good concentration so the child can work better. Such as having a separate workstation where they can work distraction free, and the use of sensory rooms to bring stress levels down. And how to actually communicate effectively with an ASD child. i.e. not giving long lists of instructions, not rephrasing instructions in different ways, keeping sentences short and to the point, and making sure the child actually understands that you are addressing them and not someone else.
Of course they were not telling me anything I didn't already know about being ASD, as I have been diagnosed with Aspergers myself. In fact they even kept asking for my input as someone with ASD who could speak from the ASD child's point of view.
The biggest thing that I brought away from this course was that the NAS genuinely cares about the wellbeing of the ASD community. And are more concerned with getting people to accept autistic behaviour than bullying them into becoming more 'NT' or trying to 'cure' them. It has certainly made me more appreciative of the work the NAS does - especially after reading about the horrendous situation in the US.
Like I said at the beginning of this post, this isn't a UK vs US post, but a heads up of just how different an ASD charity can be with the right will to change!
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Autistic dad to an autistic boy and loving it - its always fun in our house
I have Autism. My communication difficulties mean that I sometimes get words wrong, that what I mean is not what comes out.
