Archive for May 26th, 2011
Lorna Wing … ‘When Susie was diagnosed there was no support for parents and children. We felt so suddenly different.’ Photograph: David Levene
Her daughter’s diagnosis led psychiatrist Lorna Wing to dedicate her life to increasing our knowledge of autism
Giulia Rhodes
The Guardian , Tuesday 24 May 2011

Lorna Wing can recall the exact moment she realised that her daughter, Susie, was different. They were on a train, sitting opposite another mother and baby, also around six months old. The other child pointed at things through the window, glancing back at his mother to check her attention. It was, explains Wing, something that Susie never did. “A cold chill settled over me and I became very worried,” she says.
Despite years of medical training, Lorna and her husband John, both psychiatrists, knew nothing about autism when Susie was born in 1956. “It might have been mentioned once in a lecture, but as for facts or prevalence, no one knew anything.” So Susie’s diagnosis, at three, left them reeling.
Determined to change things for children like Susie, and their parents, Lorna switched her professional attention. More than 50 years later, she is one of the world’s leading experts in the field, and in 1962 helped found the National Autistic Society. Her research has been instrumental in defining autism as a spectrum, ranging from those severely affected to the – previously ignored – very high functioning. In 1981 she coined the term Asperger’s syndrome (after Hans Asperger, an Austrian doctor who first recorded autistic tendencies in children with high IQs), a sub-group of autism without learning disability, thought to include Albert Einstein.
Now 83 and semi-retired, Wing is delighted that the world of autism is unrecognisable from those dark days. “When Susie was diagnosed there was no support for parents and children,” she recalls. “We felt so suddenly and unexpectedly different to everyone else. Now there is a lot out there, and there are lots of good books. The huge change that has happened is the general recognition that autism exists,” she says.
In the 1950s the condition was thought to affect four or five children in 10,000. Today’s greater awareness, and the work of Wing and her colleagues, places its prevalence at around one in 100: a ratio Wing considers accurate but it has led to claims of an autism epidemic. Wing says: “I can’t see any evidence for an increase in numbers. There are more diagnoses because we now know about the brighter children as well. But who knows? It is conceivable that human beings are evolving to have more autistic traits because they are so useful.”
Another change has been a focus on the positive elements of autism; a kind of autism pride. “I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviours and personalities of musicians and scientists,” says Wing. She also believes that most of us have some autistic traits. “One of my favourite sayings is that nature never draws a line without smudging it. You cannot separate into those ‘with’ and ‘without’ traits as they are so scattered.”
Read in Full:
http://www.guardian.co.uk/lifeandstyle/2011/may/24/autistic-spectrum-disorder-lorna-wing
http://www.jkp.com/catalogue/book/9781843100980
By Terri Mauro, About.com Guide  May 24, 2011
Recently Updated: Parents who wonder why their kids won’t look them in the eye can get a good kid’s-eye view of the problem from “Eye Contact,” an excerpt from the book Freaks, Geeks, and Asperger Syndrome (the book they gave Max on Parenthood). Teen author Luke Jackson gives a great description of why eye contact is problematical for kids on the autism spectrum — soul-searing at worst, highly distracting at best. He suggests other places kids can look to pretend to be making eye contact. Better still, if adults can understand that listening is more important than looking (and often mutually exclusive), the whole problem can be avoided. If you’ve been upset over your child’s lack of eye contact, and have forced it in an effort to demand attention, there’s some interesting food for thought here. I’ve added a link to the Readers Respond page on advice to parents of kids newly diagnosed with Asperger syndrome, so after you’ve read Luke’s suggestions, add some of your own.
Source: http://specialchildren.about.com/b/2011/05/24/eye-contact-is-overrated.htm
Greetings! |
Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:
· A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.
· CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.
· CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.
Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.
We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!
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Regards,
The Autistic Self Advocacy Network