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Autism Cymru Conference 2004
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The West Glamorgan Forum Would like to thank John for taking the time to write such an informative and excellent review for the benefit of other volunteers.
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Review of Autism Cymru Conference by John Roberts
Wales¡¦ 1st International Autism Conference 2004
Introduction
The historic event was held in the City Hall, Cardiff on May 17th, 18th, and 19th and I was fortunate enough to be one of West Glamorgan Forum¡¦s delegates. Over the three days, I attended 12 lectures, two workshops and several speeches by Assembly Members. The range and depth of autism related subjects addressed was enormous and I hope in this brief article to give some insight into current thoughts on autism from the many pages of notes taken.
I intend to mention a few points from most speaker¡¦s session and to go into more detail on Ros Blackburn¡¦s session: this one, I feel, provided more relevant information for people working closely with a person with ASD.
What is Autism? Or ASD
People who work in the world of autism often answer this question in just a few words and refer to the Triad of Impairments (Triad).
Traditionally, the Triad diagnoses people as having autism if they show impairments in all three of the following skills;
„h Social communication
„h Social interaction
„h Imagination. In recent years, this has been modified to Inflexibility of thought
After attending this conference perhaps they, like me, would think it impossible to do justice to the subject in a whole book, let alone a few words.
It is often thought that, people with autism tend to need other people primarily as suppliers of their basic needs and, just like other people, some of them function at a high intellectual level and others at a low level.
Aspergers syndrome (AS) is, however, a form of autism where people with the condition often seem to want the company of others but do not have the social skills for easy interaction. Just because many of them function at high levels intellectually does not mean that the Triad does not apply to them. The common factors are difficulties in relating to other people and their needs and rigid inflexibility when transferring a skill from one known situation to a similar, but new, situation.
During this article I do not, generally, differentiate between ASD and AS.
Ros Blackburn
Ros travels the country with carers. She lectures on autism, she is a thirty-six year old, intellectually high functioning lady and, in her own words, is blessed with autism. As she says, she is socially challenged, not intellectually challenged. She presented the first lecture of the conference in her usual confident and articulate way. It was the second time I have heard Ros and feel that anyone interested in autism should attend one of her lectures
Words are, by her own admission, her greatest handicap in life. Because Ros has exceptional expressive verbal skills, people tend to think that her receptive verbal skills are equally developed. She made many very valid points during this, and previous, lectures and I always try and keep the following in mind and I use her own words as much as possible;
¡§If I am slow in responding to your question/direction, give me time, don¡¦t rephrase it, don¡¦t touch me. If you do I have to start reprocessing again to your new words or tactile stimulation. Say my name first, grab my attention. Just because I talk fast does not mean I can cope if you talk fast. I have to translate everything you say to me.
My freak peak is words, my self-help skills are useless-I need carers to dress, shop, make a hot drink
We want to be control freaks. My mum says Never, ever, make an excuse for autism but she helps me overcome the problems caused by it.
-------I become anxious, frightened, panicked by your world.
The social gathering of tea and biscuits before a lecture frightens me, giving the lecture does not; I am in charge, you are all neatly lined up down there-it¡¦s ordered, beautifully structured, I¡¦m in control. Most of the 24 hours you¡¨ (society at large) ¡§are in control, up here, I am in charge.
I¡¦ve been trained to nod and smile when people talk to me. I¡¦ve been trained to lie and say-¡¥it¡¦s very nice to meet you¡¦ but it¡¦s not!
I have a small bracket of coping/understanding of the world around me, the outside world is baffling, give me time to move on from unfinished puzzles; I need time, masses of time.
Show me how to do it right
Mum gives me the incredibly bad times to give me the incredibly good times when I get it right¡¨(note, I think you need to be very confident of yourself, the person and the environment before trying this one).
¡§I take things literally, when the Vicar phoned he said ¡¥is your Mum there?¡¦: I said yes and put the phone down. He should have asked to talk to her! I thought he just wanted to be sure I was not alone.¡¨
Professor Christopher Gillberg
Professor Gillberg presented two separate lectures and my notes are taken from both sessions.
To paraphrase Professor Gillberg------if he used just three criteria from one clinical assessment tool (ICD-10) then hundreds of people at the conference would be diagnosed as having autism.
Professor Gillberg, and others, referred to the fact that many people with ASD often have other learning difficulties e.g. Dyslexia. Gillberg even claimed that a person living in one area they may be diagnosed with ASD whereas, if they lived over the boundary the diagnosis might be ADHD! He emphasised his belief that ASD and ADHD shared many problems. ( I understood this to mean in the way that the conditions often manifest themselves)
He also emphasised the difficulties caused for many people with ASD by sensory overload: too much information, too quickly and too soon. That is: using too many words (either spoken or written), using the words too rapidly for the person to process and presenting the words before you have the person¡¦s full attention.
It was suggested by Professor Gillberg that we might, eventually, start splitting the Triad up into:
„h The Diad of Social Impairments
„h The Monad of Inflexibility of Thought.
How do we refer to people and autism?. The answers to this issue were very wide ranging throughout the three days. Professor Gillberg first raised the subject and he stated that we should be talking of ¡§People with-
„h either ¡§Autism spectrum disorder¡¨, and not ¡§Autistic spectrum disorder¡¨. (Both known as ASD)
„h or ¡§Autism spectrum condition¡¨, (ASC) was his newest proposal.
Dr Tony Attwood
Until about twenty years ago, Professor Attwood worked in the world of autism in Birmingham. He now continues his work in Australia where political correctness is, as yet, less of an issue.
He started his lecture with the bold statement that he has ¡§found the cure for autism¡¨ -¡§Leave the person with ASD in their bedroom. A person cannot be autistic on their own, the degree of autism is proportional to the number of people present¡¨. The implications of this remark appear to be that, as long as the person¡¦s basic needs are met, the person with ASD is self sufficient: most of the issues arising from the disorder only manifest themselves in social environments.
By this simplification of the disorder, Professor Attwood clearly got across the message that WE are the problem for many people with ASD. It is our attitude, lack of awareness of the person that creates many of the difficulties.
Professor Attwood seemed to take a diametrically opposing view to Professor Gillberg regarding terminology and referred to people with Aspergers Syndrome (AS) as ¡§Aspies¡¨. He made the valid point that people with ASD or AS would, by definition, not be upset or embarrassed by the name. One personal observation on this point is that I know one person with AS who would not feel denigrated by being called an ¡§Aspy¡¨ - but with one proviso, that it was a proper word that he could find in the Oxford Dictionary.
My feeling from subsequent speakers¡¦ reaction was that the terms ¡§Autism spectrum disorder¡¨ and Aspergers Syndrome will prevail for the foreseeable future.
Dr Rita Jordan
Dr Jordan looked at, ¡§Where are we now?¡¨
On the issues around education she indicated how we can make the difficulties less for people with ASD by a range of strategies including;
„h Exposing people to a wider curriculum, having high levels of expectation and providing high levels of appropriate support.
„h Not limiting peoples choices by the narrowness of our perceptions (of what might interest them)
„h Look at ourselves, the environment and also the implications of ASD.
„h Giving clear instructions in a manner the person can receive
„h Be aware of what interests the person, follow that interest and think what other skills you can help them develop through the interest.
„h Think aloud, tell them what we are observing, feeling etc
„h Explain what is going on around us (beware not to overload the person¡¦s senses)
„h Remember, the person may exhibit monotropic attention- becoming so absorbed by one activity that all unnecessary senses ¡§switch off¡¨. For example a piece of paper blowing across the road may mean that someone is completely unaware of approaching traffic.
Professor Digby Tantum
Professor Tantum touched on the strengths of people with ASD which included, consistency, lack of deceptiveness and often originality.
Some of the weakness he highlighted were, Lack of empathy and often needing lifelong advocacy.
He outlined some of the conditions often associated with autism and these included, dyspraxia, dyslexia, dyscalcula and some similar symptoms to ADHD
Dr Fiona Scott
Dr Scott emphasised the point that, in general, people with ASD are very sensitive to sensory input of all sorts and they probably receive the data more intensely, and in more detail than most of us are used to. For example neurotypical people (us?) tend to be able to generalise from the information we receive, we are able to see ¡§the whole¡¨, or broader picture, and put it in context by relating it to past experiences. and not be overwhelmed by the detail.
The example used by Dr Scott to illustrate this point was looking at a drawing of a baby¡¦s pram. Neurotypical people tend to see the whole and recognise it instantly as a pram. It is thought that many people with ASD might first see the different shapes of round wheels, curved hood, square body and then have to ¡§assemble the bits in their mind¡¨ and relate that image to a pram they have seen previously. Think of what can go wrong: what if it was it a different shape pram, a different colour, even if with was it facing the other way? Now imagine the same thing happening with words.
Dr Scott re-iterated a common theme throughout the Conference that many people with ASD think in pictures and respond best to words, spoken or written, if the key words convey a pictorial image.
In higher functioning people with ASD, like Ros Blackburn who can communicate her vision of our world, this might happen in microseconds if conditions are right. Imagine how difficult this might be for people who function at a lower processing speed, seeing all the different parts of everything they see and then having to ¡¨assemble¡¨ the whole-every time, for everything they see or hear or smell or feel. This is one explanation why we need to allow plenty of processing time.
Mrs Gisela and Mr Chris Slater-Walker
Chris has Aspergers syndrome and is married to Gisela: they have two children.
When asked, ¡§What sustains the relationship? Many reasons were given and they included;
„h Gisela makes limited demands on my emotions and time. (Chris)
„h Chris¡¦s superb linguistic ability. (Gisela)
„h Mutual interests e.g. language.
„h Physical attraction
When asked, ¡§What stresses the relationship?¡¨ Reasons included;
„h Gisela¡¦s untidiness. (Chris)
„h Chris sometimes gives the impression of being rude and ungrateful. (Gisela)
„h Chris, himself, stated that he did not realise that if he wanted a family, he was expected to spend time with them.
„h Gisela stated that she forgets that Chris has AS and needs his routines, such as hoovering as soon as he comes home from work
Mr Richard Mills
One of the first points made by Richard Mills was that we must teach people with ASD to be teachable and one of the ways of doing this was by using highly structured teaching strategies. This tied in with a comment made by a later speaker, Dr Joaquin Fuentes, that there is nothing you can do in a special school that you cannot do in a regular classroom.
Richard Mills also re-iterated the theme, common throughout the conference, that we must beware of providing excessive sensory stimulus at any one moment.
He also made the points that keyboards may replace the pen and that it is human beings who make the biggest difference.
26/07/04
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