AUTISM SPEAKS RESEARCH
Funding research into the causes of autism is the primary goal of Autism Speaks. While fifteen years ago there was only a small number of scientists working on autism research across the world, now there are several hundred, and more begin research on autism every day.
Autism Speaks is committed to facilitating research that will uncover the causes of autism and develop effective biomedical treatments. We are committed to researching all potential causes of autism and we invite researchers to submit grant proposals covering a wide range of ideas.
There is much work to be done, as despite strikingly high prevalence, autism research remains one of the lowest funded areas of medical research by both public and private sources.
To read about the importance of research into autism to a family, written by a mother of an autistic child, see Times Online article.
August 27, 2007
‘We ask ourselves, can we separate Alex and autism?’
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.”
HAVE YOUR SAY
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
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.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.