Mark Henderson
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A better understanding of the genetics of autism would be of huge value to parents such as Julia Young, who struggled for years to establish the cause of her young son Alex’s behavioural problems.
While Alex, now 12, was apparently normal at birth, his development began to regress around the age of 14 months, soon after his sister, Jess, was born.
“The more the baby crawled and babbled, the less Alex spoke and the more he withdrew,” said Mrs Young, of Bognor Regis, West Sussex.
At Alex’s nursery school, the staff soon began to wonder whether he was deaf. “When you called his name he would not listen to you, he would just carry on doing what he was doing,” Mrs Young said. “If he was painting he would stay painting, and if you asked him to come out of the sandpit he would stay there.”
She took Alex to speech therapy, with no results, and nothing could be found wrong with his hearing. At his first school, his odd and inexplicable behaviour continued.
“He would not sit with the other children - he would sit with his back to the class, but still answering questions. He would not line up when told to, and he would just leave the classroom to go to the toilet without asking.
“His behaviour at home became more and more erratic. He would cross the road in front of cars. He would suddenly turn the hot water on and almost scalded himself. He had no sense of danger.”
At the age of 5, Alex was finally referred to a child psychiatrist. “We had been there for five minutes when he told us that Alex had high-functioning autism.”
Alex’s symptoms are at the less extreme end of the autistic spectrum, but he shows many of its classic signs. “He gets a word in his head and keeps repeating it, trying to get me or his sister to say it,” Mrs Young said.
“He gets obsessions that can last for a year. At one point he was obsessed with Thomas the Tank Engine, and wouldn’t do anything unless we could link it to trains.
“Now he is obsessed with his Play-Station, and with the band Muse. Every time we go in the car, he wants to hear Muse records, and he knows all the words.”
Family history suggests that genetics could be involved. Mrs Young herself has had attention deficit disorder diagnosed recently and her niece’s son has attention deficit hyperactivity disorder. Both often coexist with autism. Alex also has two uncles who have suffered from epilepsy.
Mrs Young said she would welcome genetic insights that help diagnosis, but also worries about where genetic screening could lead.
“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.
“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.
“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?
“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”
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I have a 4 year old with autism and im struggling at the moment with the bahaviours i find being out in public horrible at times when people stare at us when he's having a tantrum so is it really that understood i dont think it is even this day and age.
Rachel Hillman, bridgend, s.wales
You can't "treat autism". It is NOT an illness, separate from the 'person underneath', and the person talking about genetic diversity leading to autism 'disappearing' a) simply does not understand how genetics works b) assumes that all autistic traits of any kind must be pathological. They aren't. In milder forms they can lead to achievement in some fields - the reason the traits persist in the gene pool (birth trauma, etc, aside). The person comparing it to diabetes and blindness presumably believes that these, too, can be 'cured'. Not last time anyone checked. The symptoms are managed and the people supported. So with autism.
The 'real cause' of autism? Good old human diversity (see above, disease and trauma aside). We need to learn to accept our autistic fellow-humans and give them the best education and support available to them.
A proud parent, UK,
2005: Parents without Autism start stigmatising the condition.
2020 The children, now grown, realise they have not been cured of their personalities and they cannot cure their parents of theirs either. They also come to realise, they have spent their entire lives being told that their Autism is a thing seperate from them, that they should be cured of. Now, they realise it is them. They see their parents in another way...
Paul Wady, London, Britain
My son is 9 yrs old and we have been diagonising him for autism right from his age of 2. Now at 9 eventhough he still have autistic features, he is bettter compared to his earlier stages. That is not only because of our parental care and special education we are giving to him, but also the people around him. We have got good neighbors and friends who could accept my son. Most of them hear about the word 'autism' for the first time. The School and the teachers made a big difference in his life. He has been put in a class with normal kids. The affection he gets from the kids and teachers make a lot of difference in his life and we can see him more happy.
Medicine is not available now, but we can give them what we could, the happiness in life. Let's think of today and hope for a better tomorrow.
Narayanan Ramasubramanian, Trichy, Tamilnadu, India
Education is needed urgently for schools. Too many schools in particular do not have a clue what autism is and little idea how to treat it, never mind the parents! Our son is mildly autistic but his behaviour of hiding under the table and putting his hands on his ears was treated as wilful disobedience. We were threatened with suspension and made to feel it was our fault. "Don't worry he'll grow out of it" one teacher said and another "just keep the discipline up at home". Now we have moved to to a new school we cannot believe the difference in attitude. Amazingly they already have 8 social skills groups in place, including videoing and reviewing my sons behaviour with him. It's been very tough to move, but we are starting to see progress, and his happiness...he's likely to always have difficulties with change and forming friendships...but thereagain, who doesn't?! Incidentally, the NHS specialist support we've received has been absolutely superb, quick, very skilled, & dedicated
Sammy, Surrey,
If my child were blind, had cancer or diabetes, he would get all the help he needed, and no one would say he was "meant" to be like "that".
The "acceptance" of autism is not the issue here. I accept my child unconditionally, as do all parents who love their children. I do not accept refusing treatment and help that is now available that could help him to ensure an independent life. If you want a "happy" child, independence is part of that.
I dont think my child is going to happy in 20 years time when I am gone. The world does not understand, nor wants to understand autism and the threat of institutionalisation that many autistic adults face is not one to be happy about.
Do all you can to help your child with a diagnosis of autism. The help and knowledge is out there, but its up to you to find it as it won't come knocking at your door.
Talk to other parents and leave the doom and gloom of others to themselves. Research biomedical interventions for autism now.
basil everington, chicago, illinois
We have a son, now aged 14, who is profoundly autistic and we long ago decided that his condition would be made worse by our trying to make him the 'normal' child we wanted. Instead, we adapted our way of doing things as a family to cause him less anxiety, while still trying to do things together. He has flown around the world with us and 99% of the time he is a happy young man, and we are a happier family because of it. Too often families who have a child diagnosed with autism think that it's the end of the world - it isn't, but it does mean compromise, give and take and patience. I am currently writing a book on our experiences, from a father's viewpoint, and hope to show that living with an autistic child can be an enriching experience for all concerned.
stephen croft, salisbury, UK
The scientists would rather filter out the children who are "predisposed" to autism rather than investigate the real cause.
this whole genetics route is a folly, with the population becoming genetically morediverse we should see this condition disappearing.
instead it is 1 in 100
we need research in into Treating Autism.
apple_m, london,