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Sunday, May 28, 2006

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Susan Lord

Letter From Sickened Mother

Dear Katie,
Congratulations on your excellent and most poignant work of fiction! 'Some autistic children aren’t ill, they're just badly behaved'. Well done! You have convinced us all and proven without a doubt, it is blatantly obvious you know very little on the subject you irritatingly refer to as an illness.
As the mother of a five year old son, diagnosed at the age of three with core autism, I am still coming to terms with this diagnosis, and the realisation of its life long implications for my son and my family as a whole. Every aspect of his daily life is profoundly affected by this condition, causing great distress and anxiety, and placing considerable limitations on our families' quality of life.
Months after reading your article, I am still reeling from your obvious cynicism, and venomous accusations aimed at parents of autistic children, you would have us believe, have managed to obtain a false diagnosis of 'autism' for spurious reasons such as: "an excuse for their child's bad behaviour", for monetary gain in order to claim DLA and carers allowance, and most ridiculously, to be trendy or fashionable. Hundreds of parents of severe or profoundly autistic children are being turned down for the level of DLA they rightfully deserve and need, facing appeals, intimidating tribunal appearances and the exhausting task of 'gathering evidence' to support their claim, when they could be spending this valuable time and energy on their children.
Without reference to any research, statistics or professional opinion, you are like a bull in a china shop, launching into an unsupported endless onslaught of extreme, ill considered and offensive statements. To state that children "showered with isms," who are doing badly at school, or are unable to communicate, is nine times out of ten due to "family breakdown, community paralysis and hopeless parenting" is absurd, and based on nothing more than your own dubious speculation. You should take your own advice and take great care before brandishing about, "this worst kind of inflammatory sensationalism".
My heart sank when I read your statement: "It must surely be the worst kind of damage to label your child with an 'ism'." You must understand that parents cannot and do not wish to label their child with an 'ism'. When your child is labelled with an 'ism', they have been diagnosed with a very real and serious condition, needing early intervention, provision and help in enabling them to reach their full potential.
Autism is not diagnosed lightly, as your article implies, and children are not being showered with 'isms'. This is a fact. Anxious parents are placed on long waiting lists and left in limbo for up to three years, before a thorough and comprehensive assessment is done to establish whether or not their child meets the diagnostic criteria in order to ascertain a diagnosis of ASD. Parents are then often left with little or no support in gaining access to the services and provision their child is in dire and immediate need of, at the same time going through a grieving process for the child they had so many aspirations for and took for granted to be 'normal', who they have effectively lost.
Children cannot 'fake' autism. Any parents you are suggesting would seek a diagnosis of autism for suspect reasons would not get past their GP or health visitor and a misdiagnosis of autism is highly unlikely. I am sickened by your cynicism and angered by your extreme views, and although you attempt to balance these views with expressions of empathy for "those parents whose children really are on the autistic spectrum", I am not convinced.
I believe you MUST be well aware of the negative impact your article will have on the public perception of autism, and that the damage you have caused to the plight of families struggling to cope with the demands of their autistic child, in the face of a system that is failing them, cannot be undone.
In you follow up article, 'Autism, we need a debate', in defence of your views on autism you say you are "sorry for the pain, but not for raising the issue". Yet you did far more than raise the issue of rising autism statistics. The weight of your article was focused on your intent to convince your readers, on a very personal and critical level, that the "autism epidemic" is due to such things as, hopeless parenting, family breakdown, and most controversial of all, your assumption as fact, that there are unscrupulous families who are able to obtain a diagnosis of autism for monetary gain, while you yourself are ‘profiting’ from autism, by being paid for airing your grossly inaccurate and damaging views!
This is not a debate. This is your own callous and contemptuous opinion, aimed at discrediting families with a diagnosis of autism, who you have insulted and alienated, and it is this you should be deeply sorry for.
It is a responsible and concerned parent who seeks out a reason why their child, at the age of two has not learned to say mammy or daddy, and it is an irresponsible and damaging individual who seeks to persuade the public that there are families who are able to exploit this serious condition for all it's worth. By casting doubt over the validity of every diagnosis of autism, you have by default, undermined the motives and validity of every family whose child has a diagnosis of autism. Including those you concede to be 'genuine'.
You refer to your concerns regarding those families with "genuinely autistic" children, who would benefit greatly from ridding the system of opportunistic parents obtaining a false diagnosis of autism, and suggest that "families faced with autism every day," would want nothing more than to have these people removed from "any list". Wake up Katie! As a parent of a 'genuinely autistic' child, "faced with autism every day," why would I have any interest in weeding out 'fictitious families' I do not believe exist? You are inciting a 'witch hunt', serving the system with an excuse to 'crack down' further on all DLA claims involving autism.
Are you able to concede to the possibility that you may be guilty of an insidious form of discrimination, against a disability which cannot easily be recognised as such, but can express itself by resembling 'bad behaviour'?
It has not gone unnoticed, that in your article, 'Previous convictions,’ where you talk about your experience of meeting and interviewing a man who had devoted his life to the "mentally handicapped," Jean Vanier. You openly profess to your insuppressible feelings of nervousness, squeamishness and disconcertion towards the 'mentally handicapped'. Ending your article, with reference to your ideas about perfection having been subtly altered, you state, "I still find mental handicap disconcerting but, after having met Vanier, I no longer wish it was not there". I cannot help but speculate as to what your 'previous convictions' were, and ask myself why you should be trusted to be objective on the subject of autism, when you have such questionable disconcerting feelings towards the 'mentally handicapped'.
I am not surprised you have become something of a hate figure. I thank those people who are not prepared to concede to your offensive views, individuals who suggest they should not have been published, and lobby groups that call into question your motives for writing your article. Those who live with autism can only be helped by "shouting down" those with extremist views such as yours, that only serve to damage and distract from the call for a much needed debate on the rising autism statistics.
I am afraid to say that your "desire to question the reliability of statistical analysis in Scotland," has been completely over shadowed and distracted from by your sickening views and determined desire to undermine these statistics, at the cost of maligning thousands of families affected by autism.
I call for another debate. The debate needed on how any newspaper can be allowed to publish your own brand of "pulpit thumping" propaganda on autism. Newspapers should not 'hide behind' their journalists, and the Sunday Times Scotland must be held ultimately responsible for the inevitable and irrevocable damage and distress evoked by your 'article'.
You have supplied the bullets, Ms Grant, and they have fired the gun. Straight into the hearts of every family affected by autism, and without any concession of a public apology and retraction of your article, you should hang your ‘hard-boiled’ head in shame.

Susan Lord
E-mail: susan-lord@blueyonder.co.uk

Anon

I edited this comment to change Anon's references. She confused the clueless Katie Grant with the clued up Kristina Chew.

Sickened mother is quite right. As a work of fiction, your piece is absolutely marvellous! Brillant! Fantastic!

However, as a factual piece, it is the shoddiest, most appaling work I have seen and believe me, I've seen some really stupid stuff in my time. There are only two completley factual things that I can see.
.The words aren't made up
.Nor are their spellings.

If you take those two out of the equation then your piece has only a quarter-ounce of truth in it at the most. You may be asking the right questions or not. However, your answers are, to be blunt, completley loony.

As for your nine times out of ten comedy routine, imagine this, Mrs Grant:

.You are transported to a planet - you have no idea of the manners or customs of these aliens.
.Everytime you open your mouth to say something, they either call you rude, tell you to shut up or bully you or some combination.

If you COULD talk, WOULD you?

Because that's the reality for those people with Asperger's and I presume those people at other places on the spectrum.

Stop talking about epidemics.

1. Also, ep‧i‧dem‧i‧cal. (of a disease) affecting many persons at the same time, and spreading from person to person in a locality where the disease is not permanently prevalent.
Thank you, dictionary.com

So how your brain is wired up is contagious, now? *rolls eyes*

It's people like you, Mrs Grant, that make it even harder to get along with people.

I think, Mrs Grant, ma'am, you would be served well by paying a visit to:

Institute for the Study of the Neurotypical
and also to:
Neurotypical Syndrome

There are isms that people should be showered with and ones they shouldn't be.

If you mean that -ism in the sense of 'biased toward' should not be used as a way to squirm your way out of every disciplinary action, regardless of whether you deserve them or not, then I agree.

If however, you are referring to diagnostics then you leave plenty of people out.

dyspraxia, dyslexia, ADHD, Visual/auditory.

ASD. Autism Spectrum Disorder. Please pay attention to the spectrum part.

You keep going on and on about autism focusing only on the severe end of the spectrum. In fact, you're beginning to sound like CAN.

However, a part of me would like to ask a question but I'm guessing someone going to jump on me for being ****** so I will leave it unasked.

Or you would, if you at least acknowdeleged in a better way that it is not a case of a load of money-sucking greedy pigs.

If a child can't concetrate, why blame autism?

Quite. Instead why not look for the ignorant, bigoted, abusive NT students' behaviour towards the student on the autistic spectrum? Yes, I said abusive. I'll say it again. Abusive. If the adults are too **** chicken to call a spade a spade, don't be suprised when the non-adults decide to take matters into their own hands.

Judging from this contribution n to the world, I'm not sure the pre-natal testers have got the right idea about what to screen for. Especially not if this how you typicially behave.

P.S. Do you remember a weird kid in classes who would stare or make odd movements with his/her body? Did you make his/her life hell? Did you then wonder why he/she couldn't concentrate? If you did all these things, then re-read my comment, complete with links until it sinks in. If it still doesn't, then all I will say is: It's hard to concetrate when you're being bullied all the time.

If you've read all this 100 times and still don't understand: I wish I could pity you. I really do.

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