bobb's blog

autism and quality of life

A recent research publication from overseas says a "study concerning the elderly with autism showed that the difference in quality of life is similar in the elderly. Age, IQ and symptom severity did not predict quality of life in this sample. Across the lifespan, people with autism experience a much lower quality of life compared to people without autism."  (see http://aut.sagepub.com/content/19/2/158....).

Questions that spring to (my) mind are:

letter: need to act on NDIA's mad transport/travel policy

Dear The Honourable K Andrews MP

subject: Urgent: notify the community about the NDIA's transport policy review

Recently, someone reported on Facebook that their child's transition to the NDIS resulted in limiting or denying their child with a disability access to their school. Basically, the NDIS planner would not fund transport to and from school for a child with a disability.

I reviewed the NDIA's policy and on 14th June I posted the following to the Facebook discussion group …

"autism research" may not be about autism

A recent article on the ABC's Ramp Up website (see Everyone is on a spectrum) reports on an online survey that included "people who identify with Autism Spectrum Disorder".

One can but wonder how many "people who identify with Autism Spectrum Disorder" actually have or even should have a diagnosis of Autism Spectrum Disorder (ASD) ... and how representative those people are of the ASD "phenotype".

It turns out that the article describes findings that are really about "neurotypicals":

    positive story of kindness and excellent behaviour all around ...

    Naomi receives a call from a mobile number I don't know.

    "Is this Naomi?"

    "Um, yes."

    "There's a man called *** here and he's looking for you. He's pretty freaked out."

    I say "I am coming down."

    It turns out that *** has an intellectual disability and this is his first trip in a taxi by himself. He got a little muddled and couldn't figure out what next.

    I get downstairs and the most average looking bloke you can imagine is standing there with him.
    He asks if it's all OK, and can he go now.


    Naomi shared this story and wrote:

    No need to make people normal but autism treatments are essential

    An article in The Guardian asks “Do we really need a cure for autism?” (see http://www.guardian.co.uk/commentisfree/2013/feb/22/does-autism-need-a-cure). Following is my person view ...

    This is a complex question. First, let's be clear about what is meant by “autism”. I take “autism” to mean a “severe and pervasive impairment”, as the group of disorders known as autism spectrum disorders (ASD) are described in the DSM-IV.

    But there are people who use “autism” to mean a wider category of behavioural and personality traits.

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