Hi everyone
I have had an email off of Babs,the owner of a site for parents whose children have semantic pragmatic language disorder which is what my dd has (very commonly found in children on the autistic spectrum).
She has sent the following email off to the times and I think she raises some very interesting points:-
Dear Sir/Madam,
I am writing to you with reference to an article entitled "Katie Grant: Some ‘autistic’ children aren’t ill, they’re just badly behaved" published in the Sunday Times, May 14, 2006.
As Chair of SPD Support, a voluntary organisation of parents and professionals based in the United Kingdom, who aim to provide quality information, advice and support to parents/carers and professionals supporting children diagnosed with Semantic Pragmatic Disorder, a language communication disorder commonly found in children with Autism, I feel it necessary to put pen to paper to express my concern that the Times would even publish such an uninformed and damaging article.
I would like to express concern over the following points..
The author says..
"The plain fact is that autism has attained a certain notoriety...it has become even more fashionable."............."the condition has been adopted by many other parents on behalf of children who are not ill, just badly behaved"...................... "a diagnosis of some kind of behaviour “ism” might result in £80 a week disability living allowance"......................."although some may be autistic, I doubt that most are really ill"....."It is not autism that makes so many children fidget all the time, it is habit. Children unused to staring at anything static, or making conversation that does not consist of grunts, are bound to appear strange.".............. "But it must surely be the worst kind of damage to label your child with an “ism” when there is nothing wrong except that you’ve not done a great job at child rearing"
Katie Grant obviously has absolutely no idea or understanding of what Autism or any neurological disorder means for a person and their carers.
First of all Autism is not an illness. People with Autism are not ill and they are certainly not "strange"! People with Autism struggle to develop skills within an area known as "The Triad of Impairments", namely difficulties with:
social interaction - difficulty with social relationships; for example, appearing aloof and indifferent to other people;
social communication - difficulty with verbal and non-verbal communication; for example, not really understanding the meaning of gestures, facial expressions or tone of voice;
imagination - difficulty in the development of play and imagination; for example, having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively.
Secondly, although there may be a case that some practitioners may follow diagnostic trends, implying that the diagnosis is given out willy nilly and that the condition has been adopted by many other parents on behalf of children "who are not ill, just badly behaved" is ludicrous. Where are the parents she claims to exist? Does she introduce anyone in the article? Where are the Physicians she implies will give a diagnosis to order, at the whim of any parent of a "badly behaved child"? Show me one mother who has been able to secure an Autism diagnosis that easily for a child who quite obviously has Autism, let alone one who is "badly behaved"! My experience of the many parents that come to my organisation is exactly the opposite, parents struggle to obtain a diagnosis and support for their children. Parents are usually the first to know there is something is not right and have to go through months of waiting for assessments, years even pass by before any answers are found because a "let's wait and see approach" is usually adopted by professionals. Once a diagnosis is received, however, parents are devastated, knocked sideways by it and come to our organisation grieving their hearts out. They don't, as Ms Grant implies, jump for joy because they have been granted a label that is as fashionable for their child as the latest pair of trainers; a label that will open the door for DLA.. "worth quite a lot.. even more if you are a carer".How insulting can one be?
Why would any parent wish to label their child with such a serious lifelong developmental disability, so they can claim some money!
I would like to point out that parents don't apply for DLA for some sort of personal financial gain, they apply for it for their child, who is entitled to receive financial support for their condition. I could guarantee there are many parents of children with Autism, who are actually receiving DLA, that are deeply in debt after having paid thousands of pounds out for all sorts of services, respite care, support sessions, therapy materials and educational tribunals in order to help their child make progress and keep their family from tearing itself apart.. Does Ms Grant realise that there are people with children who have autistic spectrum labels who try and try and actually fail to receive DLA? She makes it sound so easy? Does she understand that filling in a DLA claim form is one of the most upsetting and difficult things a mother of a child with Autism has to do for her child. To have to sit down and write in such a negative way about every little thing your child cannot do is absolutely soul destroying, when a mother's natural instinct is to brag to the hills if their autistic child manages to hold eye contact for a second, or manages to not having a screaming fit when you turn the hoover on because their senses are so heightened? No, I don't think she does. But then Ms Grant enlightens us all with her knowledge on the subject of autism with the quote "it is not autism that makes so many children fidget all the time"... Autism does not make a child simply fidget!
There probably is a case that in today's society, parents can be too busy to spend valuable time with their children and that some children might suffer language delay/social difficulties as a result of not doing so.. But let's get one thing clear. If a child is diagnosed with autism... It is not the parents fault.
I strongly suggest that Ms Grant reads some material written by Lorna Wing, a National Autistic Society and world leading expert on Autistic Spectrum/Social Communication Disorders before she puts pen to paper on the subject again and that your office takes advice before publishing such nonsense.
Kind Regards