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THE AUTISM PUZZLE: LIVE CHAT
Wednesday 15 January 2003 |
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Michael Baron, Founding Chairman of the National Autistic Society, answered your questions about autism live online. This is an edited version of the transcript.
Joanna: How young was your son when you first noticed his symptoms? Did you know much about autism at that time?
Michael Baron: My wife first thought he was not like other babies when he was up to six months or so. She thought it wasn't quite right the way he didn't look at her straight in the face, the way he behaved. Certainly none of us knew about autism - this was in 1957.
Sally: Do autistic children need to attend special schools?
Michael Baron: As the programme showed, this is a spectrum disorder ranging from children who are very disabled to people, children, who are highly intelligent and highly functioning.
What education they have depends upon the degree of disability, so for a number of children, yes, they need to be either in special schools or in special classes attached to mainstream schools.
As one goes up through the spectrum, it's possible, and there's much more of it now than ever was, of trying to integrate children with autism into mainstream schools with the support of a teacher or classroom assistant.
ChrisSW: Have you recognised any signs of autism in previous generations of your family?
Michael Baron: Now I hear about this autistic gene I begin to wonder about traits in myself or my father!
UKPhotographer: I have a brother who is 12 (I'm 30) who has Asperger's, he also hears voices. I would like to know if this is a part of it, or if it may be schizophrenia?
Michael Baron: I've heard of this associated with the condition - hearing voices and having unknown little friends and so forth.
It's possible, I think, that people who were diagnosed with schizophrenia may not be schizophrenic but have Asperger's Syndrome. And 40 years ago there was a condition talked about called juvenile schizophrenia.
Kerri: I work as Special Needs Assistant for an eight year old within a mainstream school. Recently he is becoming obstreperous and uncooperative. It is very difficult to handle as he 'shuts off' when reprimanded. What should one do?
Michael Baron:
I dealt with it by setting up a system of such behaviour not being rewarded and good behaviour being rewarded, so there'd be some conditioning going on. You'd manage to perform some system under which he or she would know that to do this you'd get a reward, if you don't do that you'd sit in a corner by yourself.
Saeed: I have a 3 and a half year old son who is an albino and registered partially sighted as well as being autistic....I love him to pieces, but can feel the pressure sometimes, what would you recommend as the best way to live with his condition?
Michael Baron: Try and meet some other parents and become part of some support group.
Every parent I've known in the past initially feels totally isolated until they meet other parents, and from those meetings they can draw a lot of support.
Often they can gain strategies for managing difficult behaviour.
John: My daughter has just been diagnosed with autistic spectrum disorder......her schooling is mainly dictated by bullies ...we have decided to home educate her...is there support for parents like us?
Michael Baron: Yes, indeed there is. I would suggest getting in touch with the National Autistic Society for advice. (Or visit the National Autistic Society website.)
Fried: Why should autistic spectrum be considered to be somehow a detrimental condition rather than just one facet of humankind?
Michael Baron: A good philosophical question. We look at it as a condition because it is disabling, and if not dealt with, people are denied the opportunity to fulfil their potential.
Brianbge: In your opinion/experience, is a near age sibling a help or a hindrance?
Michael Baron: Depends on what age. I think the answer is that in a young family the presence of a sibling with autism can impact very heavily on the other siblings because the attention of the parents is directed to the child with autism
and other children may well feel deprived in the early years.
My experience however is that once that period has passed and everyone's grown up, siblings are remarkably concerned and kind towards their siblings with autism.
Nicjan: Is there any way of receiving a 'grading' of autistic severity, my son has a vague diagnosis of ASD and we often wonder if we are doing the right thing by him?
Michael Baron: I'm not aware of any grading except in the sense of how they function. It's a question an educational psychologist would be able to answer, in a sense that grading is the degree they are able to integrate or not into a mainstream school.
Kim: Does Timmy live at home with you?
Michael Baron: No - Timothy lives away in a small residential home of people with mixed abilities and he's the only one there with autism which means there's a higher level of communication than if he was in a residential setting of only people with autism.
Lynn: Michael our son has been diagnosed as atypical autistic can you explain what atypical means?
Michael Baron: Atypical autistic - there are all these differential diagnoses made by different psychiatrists and I find that an unusual one, but another diagnosis I've heard is of someone having autistic features.
Petefromleeds: I attend a message board where there has been a lot of discussion about the public's perception of autism, and about the media's supposed ongoing tendency to present it in a particular way (for example, most films, programmes etc that have portrayed it have portrayed savants who are quite severely afflicted). Do you have any comments to make on this subject?
Michael Baron: The media is always interested in freaks, the unusual person with autism, the lightning calculator, the memory man. They are atypical. It's only a small minority of people with autism who have these extraordinary abilities.
In other words, they're not all like Rainman.
Chris: Hello, Michael. My son is 28 months with severe epilepsy and autism. How have you coped over the past 40 years and what do you think for the future when you leave your son?
Michael Baron: I've coped by a variety of means. Having other children, there comes a point where you have to have regards to their interests and growing up. For that reason, my son went to residential schools from about the age of ten
and then came home regularly during holidays. He was always in contact with the family and his siblings, and as to the epilepsy, well, that's something we've lived with and he's been helped by an appropriate regime of medication.
CC: How can people with autism/Asperger's Syndrome be helped to socialise better?
Michael Baron: Somehow or other they have to be helped to find a support group - same as the parents. Again, the National Autistic website refers to Asperger's support groups.
Otherwise, I agree it's very difficult for someone with Asperger's to counteract with their sense of isolation and difficulties in making friends, for example.
Saz690: One of the original missions of the NAS was to provide an education for autistic children who couldn't be educated in mainstream schools, now the government has a policy of inclusion and many parents of autistic children are alarmed that their child will be forced into mainstream which is ill-equipped to cope with them. Is mainstream the right environment for an autistic child?
Michael Baron: It entirely depends on the degree of disability, and the availability of support within the school and support by the school for the parents - particularly in the case of a day school.
But it could also be that while there's not been an increase in the number of special schools, it could be that that's a matter of cost, that education in the mainstream may be a cheaper way of trying to educate children with autism.
Tony: How has the education system developed over the last 40 years to cater for autistic children?
Michael Baron: It developed from nothing to something. Once the division long ago between children who were ineducable and children who were educable disappeared in the late 1960s, local authorities were prepared to
fund education at special schools, the first of which was set up by the National Autistic Society and by regional autistic societies.
But there have never been enough special school places for all the children who would be able to benefit from special schools.
So my general conclusion is that it has improved greatly but it's never enough.
Dana: Is routine most important in an autistic child's life? I have no routine ... will it harm my child?
Michael Baron: Routine is important - to know what will happen later today and what will happen tomorrow, so that if my son is going back to his residential home tomorrow, he is told the day before what is going to happen, and in his case for example the suitcases would be set out so he is
aware that way round that there are going to be changes.
So the short answer is that routine is important.
Lindy gt: My son was diagnosed with ADD and Asperger's. He can socialise well although will always be overly naive, at 18 yrs now I wonder if he will ever be able to work. He is good with sound on the computer. But, failed to continue a sound engineering course. I do not want him to feel dependent on me.
Michael Baron: High functioning people with autism or Asperger's Syndrome are certainly out there in the workplace, and the National Autistic Society has a scheme for helping to place those sort of autistic people in work in supported employment.
They are trying to extend it over the country but it's a slow and difficult business to persuade an employer to take on someone with that disability. But it has been done and is being done.
Hilarybutler: Do you feel your son would have become as calm as he is today without the special teaching he received to help him understand his world.
Michael Baron: I think that with his special teaching he has been helped over time to become the person he is.
I think he was calmed enormously during his teenage years.
That was when he was at a Rudolf Steiner school.
Kevnsa: The NAS raised 50 millon last year where is all this money being spent?
Michael Baron: Last year's income was mostly spent in their schools, adult units, information and advisory services and other initiatives for supporting people with autism.
Fried: Finding the opinions of others inconvenient distractions is frequent in humans - what is it that makes autistic people different in this respect?
Michael Baron: The difference is that it dominates one's social life - it's not something that can be switched on or off.
Tom: May I ask if your son requires medication to maintain his behaviour?
Michael Baron: No - the only medication he has is to control his epilepsy.
Torgun: Is there a proved genetic link involved in autism or is research on this still being done?
Michael Baron: The research is ongoing in terms of finding a genetic link.
Nikki: Do you feel there is still a lot of prejudice surrounding autism?
Michael Baron: I think there's always some prejudice against integrating with people who are disabled, but it's nothing like what it was 40 years ago.
CC: What are you personal ideas on what might help those overall with autism?
Michael Baron: Every child with autism, having been diagnosed early, has the benefit of education targeted towards modifying his disability, and enabling him to life as full a life as possible.
BBC Host: That is all we have time for. Here's Michael Baron with a final word...
Michael Baron: A lot of distance has been travelled in the last 40 years.
There's a long way to go yet.
I'd be very happy if every child diagnosed with autism has special educational provision in the hope that with that their disabilities would be modified so that they'd be able to lead independent lives.
The Autism Puzzle homepage
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NATIONAL AUTISTIC
SOCIETY
Advice and support from the official site
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BBC Links
About Michael Baron
Co-founded the National Autistic Society in 1962
BBC
Health
Information and links about autism from bbc.co.uk/health
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content of external websites
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