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for the Level One Open University course T171 "You, your computer and the Net" |
For the subject for my assignment, I have chosen the two closely related conditions known as Autism and Asperger Syndrome. My daughter, Joy, (left) is autistic with severe learning disabilities. She is now thirteen years old and integrated into Secondary School with a full-time Learning Support Assistant. I feel that I can offer a personal viewpoint on these often-misunderstood conditions. I have tried to select suitable sites from the wide variety on offer to illustrate the incredible complexity of Autism and Asperger Syndrome. Issues covered include diagnosis, education, research and the MMR vaccine. On the other hand, it is both cruel and unjust to write off and exclude people affected by these disorders. The personal websites that I have chosen prove that many are articulate, intelligent and well-equipped to contribute effectively to society. Finally, while it is generally accepted that autistic and Asperger Syndrome people have considerable difficulty in understanding humour, the final website I have included proves that some can be devastatingly ironic when writing on the subject of 'normal' people. I hope you will find this web page interesting, eye-opening, challenging and even, in some places, shocking. |
Autism-UK - A FAQ for Beginners A clearly set out FAQ page aimed mainly at parents whose children have just been diagnosed as Autistic or Asperger Syndrome. Written in an easily accessible and almost chatty style, it gives useful information about such issues as Medical services, diagnosis, Education provision, Social Services, and available benefits. Autism-UK was set up in 1996 by Andrew and Lesley Black who wanted a UK-orientated autism mailing list. It is now based at the Psychology Department of Edinburgh University and administered by Steve Law who works as a Computing Officer in the Mathematics and Statistics Department at the University.
A paper by Barbara L. Kirby who maintains the O.A.S.I.S. (Online Asperger Syndrome Information & Support) website at the University of Delaware in the USA. As the parent of a child with Asperger Syndrome, she is able to explain the differences between an autistic child and an Asperger Syndrome child. She also makes the point that there is still considerable disgreement between experts as to the exact definitions of the various conditions spread along the Autistic Continuum. These include Autism, Asperger Syndrome, Pervasive Development Disorder (PDD), High Functioning Autism (HFA), Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD) and the oddly titled Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS).
MMR - U.K. parents want the right to choose single vaccinesSORRY - this is a dead link now! This website - www.singlevaccines.com - was set up by Steve Law at the end of January 2001 (see Autism-UK - A FAQ for Beginners - above) to provide information for anxious parents about single vaccines. It also aimed to lobby for further research into the question of the link between Autism and the MMR vaccine. A primary aim of the site was to counter the UK government's decision to spend £3M on advertising the safety of MMR (this advertising campaign has since been shelved). The site is clearly laid out, uncluttered and offers useful information, media links and contact points for concerned parents. Steve Law has been actively involved in the autism community for some time and already co-ordinates the Autism-UK mailing list.
Structured Teaching: autistic students respond well to structure.Written by Lee Marcus of the Chapel Hill TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) Center, USA, this paper sets out techniques that teachers of autistic and Asperger Sydrome students can use to benefit their experience of education. Again, based on practical teaching experience, these principles include organising physical surroundings and work areas, use of schedules, clear visual signals and consistent repetition. These approaches can also be used by parents to facilitate understanding of their autistic and Asperger Syndrome children within the family situation. (Link takes you to the Division TEACCH website). Division TEACCH is an organisation based at the University of North Carolina. It is part of the American University community and is closely linked to other Autism organisations in the USA.
Local Monitoring By Health Authorities Of Childhood Autism Incidence In The UK
This unfunded informal research was carried out by an individual parent, David Thrower. It was prompted by a Parliamentary Written Answer on 9th June 1998 by the Junior Health Minister, Paul Boateng, who stated that the government encouraged Health Authorities and Local Government Authorities to assess the numbers of people with autism in their areas together with their specific needs. Mr. Thrower approached Health Authorities in England, Wales, Scotland, and Northern Ireland and asked them how they assessed the incidence of childhood autism in their areas - 77 out of 128 responded. (In addition, 33 London Social Services Departments were also approached but a very disappointing 7 responses were received). The research concludes that there are effective assessment procedures in place in some Health Authorities and steps being taken to put procedures in place in others, but a worrying number are not carrying out any assessment at all. This does not bear out Governmental assurances that it is encouraging proper assessment procedures by UK Health Authorities for autistic children. The link takes you to the results of the survey in full on the Autism Independent UK website (formerly S.F.T.A.H. - Society For The Autistically Handicapped).
Marc Seegar - a brilliant young man affected by Asperger Syndrome Marc Alexander Seegar was born in April 1974 and tragically committed suicide in December 1997 aged only 23 years. His BSc Hons in Biochemistry, University of Manchester, is testament to the fact that this was a highly intelligent young man and his sudden, unexpected death obviously shocked those who knew and loved him. Here you will find his two unique and illuminating insights into what it meant to be a young man with Asperger Syndrome, The Battles of the Autistic Thinker and A Survival Guide for People with Asperger Syndrome (April 1997). These are both long papers and require a fair amount of reading but they are well worth the effort. They offer a glimpse into the bewilderment felt by an Asperger Syndrome sufferer in a world which he neither fully understood.... nor which understood him.
Ooops... Wrong Planet! SyndromeMeet the amazing 'jypsy' a.k.a. Janet Norman-Bain, her husband, Roger, and their four children, Jesse (15), Alex (13), Ben (11), and Jasmine (8). They live in a little village called Oyster Bed Bridge on Prince Edward Island in the province of Ontario, Canada. 'Jypsy' herself is Asperger Syndrome, Alex is autistic and Ben was diagnosed as Asperger Syndrome last year. When you visit this website, you will realise just how creative and brilliant people with Asperger Syndrome can be! Not surprisingly, "Ooops... Wrong Planet! Syndrome" has accumulated a mass of awards from all over the Web. It is bright, colourful, rambling, chock-full of interesting sayings, links, photos and stories. Please take Jypsy's recommendations for "A good place to start in this wonderfilled world of autism......" starting with "How to understand people who are different" through "Welcome to Holland" and "Don't mourn for us" to "The EXPERTS -1st & 2nd Hand Accounts of Life on the Spectrum - Their Homepages" and the "History of Ideas on Autism" by the eminent UK autism specialist, Lorna Wing. Jypsy has the most amazing optimism and enthusiasm to publicise and illuminate the problems of autism and Asperger Syndrome. This is a huge site and the pages scroll forever but, once again, it is well worth exploring in depth.
The Institute for the Study of the Neurologically Typical"Neurotypical Syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity", so reads the introduction to this website. To understand the subtlety of this, you should understand that "Neurotypical Syndrome" is the term applied to 'normal' people by Asperger Syndrome sufferers who are (allegedly) devoid of any ability to understand humour. In my humble opinion, "brilliant" is the best word that can be used to describe this site. It discourses knowledgeably and at length, in a breathtaking parody of so many 'expert academic' websites about autism and Asperger Syndrome, sprinkling its 'learned papers' with 'medical jargon' including a report from the "Journal of Neurologic Obfuscation". The webmaster, identified only as 'muskie' discovered that he was on the Autistic Continuum soon after he turned forty, and was astonished to discover that, at last, he had a valid explanation for being 'different'. But his elation rapidly turned to outrage during his search for as much information as possible. He was incensed by the opinions and theories of 'experts'. How could they possibly know how an Autistic or Asperger Syndrome person experienced life? They themselves had no experience of actually being autistic or Asperger Syndrome - they were merely observing and theorising - often wrongly, in 'muskie's opinion. This website is an illuminating insight into the views of an intelligent person with Asperger Syndrome who refuses to be pigeon-holed by 'experts'.
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"The last thirteen years have been both an experience and an education for our family as we struggled to weather the highs and lows that come with having an autistic child.
Sometimes it felt that we had sunk to such dark depths that we would never climb back into the light..... Then there were the times when we watched Joy squealing with delight at the waters' edge as she lobbed pebble after pebble into the sea while it lapped mischievously at her trainers. We laughed with her as she giggled irrepressibly looking down at her feet getting wet, her whole being glowing with sheer pleasure at having so much fun.
Somehow, at times like that, all the troubles and heartache of the past simply fade into oblivion......" April 2001
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