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Access: Autism: where have we come from and where are we going?

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  • Russell Brown,

    The triad involved problems – it was framed in negative clinical language ‒ with social interaction (mind blindness), communication (non or unusual use of language), and restricted interests and activities.

    This was a real issue when we first started looking for information about our son. Everything was cold and clinical – until we found Barb Kirby’s O.A.S.I.S., which contained things we could connect to our family experience.

    Auckland • Since Nov 2006 • 22743 posts Report Reply

  • Hilary Stace,

    Steve Silberman has just been in Melbourne at their writers' festival. Would have loved to hear him in person. Maybe we would have an autism themed writers' festival here one day featuring him and Temple Grandin, John Elder Robison, Ari Ne'eman, Wendy Lawson, Dawn Prince-Hughes and others.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Brent Jackson,

    Saw the play of "The Curious Incident of the Dog in the Night-time" last month. It was really well done, and, although I had already read the book, it gave me a much better idea of how sensory overload can easily lead to a meltdown. The play also showed really well the difficulties of parenting a child with Autism, and the strains that it puts on family life.

    Auckland • Since Nov 2006 • 614 posts Report Reply

  • Hilary Stace,

    A couple of weeks ago Minister Hekia outlined the new policy of shifting 'special' educational support from older to younger kids, including those with autism. As some of us joked it was because she thought you could cure autism at pre-school and then those children wouldn't need any resources later on. However, yesterday I heard that theory for real via a parent who had heard it at the local Work and Income office. She was told by a senior staff member that the government was putting in more resources into autism in pre-schools to cure autism because you could if you got it early. The implication that my friend was unlucky that her child's autism hadn't been caught in time.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Russell Brown, in reply to Hilary Stace,

    Holy shit this makes me angry.

    Auckland • Since Nov 2006 • 22743 posts Report Reply

  • Carol Stewart,

    What a fantastic, informative summary, Hilary. Thank you so much. Our book group recently read Steve Silberman's Neurotribes. I learned a great deal from it.

    Wellington • Since Jul 2008 • 821 posts Report Reply

  • Sacha, in reply to Russell Brown,

    Indeed. That sort of thinking is rife in govt middle managers. No meaningful investment in disability awareness across public sector. Frittered away the scarce public programme funding too.

    Ak • Since May 2008 • 19667 posts Report Reply

  • B Jones,

    Sounds to me like a misunderstanding of a principle that's gotten a lot of currency in the social services sector in recent years - early intervention is very useful in a lot of areas (and a persuasive argument for people not wanting to spend more money down the track) but not a panacea.

    There's plenty of scope for staff at the periphery of a large organisation to get the wrong end of the stick of what's going on in the centre (and vice versa), but that's not much comfort when it's the staff at the periphery making decisions affecting real people within a framework that's either wrong or poorly understood.

    Wellington • Since Nov 2006 • 976 posts Report Reply

  • Hilary Stace, in reply to Carol Stewart,

    Thank you, Carol. As my PhD was publicly funded I have always felt an obligation to share what I learned. It was a wonderful opportunity to indulge in some research and theory. Although most of what I have learned has been from people with autism and families.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Russell Brown, in reply to Sacha,

    ndeed. That sort of thinking is rife in govt middle managers. No meaningful investment in disability awareness across public sector.

    There's a political reality too. I recall the Australian election where the Lib-Nats and Labor got into a bizarre bidding war on autism funding – and it was nearly all earmarked for under six year-olds. Because helping little children means better optics ...

    Auckland • Since Nov 2006 • 22743 posts Report Reply

  • Hilary Stace,

    I think the assumption about the cure was about some intense behavioural intervention that autistic children would now get. Which has a blaming subtext - you have a badly behaved child, and you haven't done enough to fix it.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha,

    There's a generalised assumption that disability is temporary and curable - and as we've discussed previously, including a rehab academic as the only disability perspective on the govt's welfare panel didn't help MSD's understanding.

    Ak • Since May 2008 • 19667 posts Report Reply

  • dave c,

    good stuff Hilary - is there an online link to your PhD?

    welli • Since Jan 2007 • 8 posts Report Reply

  • Hilary Stace, in reply to dave c,

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Tanya Breen,

    Thanks Hilary, for this really useful history and your thoughts. I am also very concerned about the lack of academic understanding of autistic adults and their support needs. I was one of the writers of the NZ ASD Guideline, and my focus was on adults and young people. There was hardly any literature to draw on, and things have not changed much 10 years later. There is too much focus on prevention and cause, and not enough on how to help people have good lives right now. As you know, I am doing doctorate studies in autism currently. My focus is on the experience of autistic adults when they have been involved with the criminal justice system as defendants, what we can learn from this, and what we could do to improve things. Early stages currently, but I hope to make a difference over the next few years.

    Hamilton • Since Sep 2016 • 1 posts Report Reply

  • Hilary Stace, in reply to Tanya Breen,

    Yes, the justice system is a huge issue. Important research.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha, in reply to Tanya Breen,

    Thanks, Tanya.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Hilary Stace,

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Hilary Stace,

    For anyone on the spectrum/of the neurodiverse community (or a significant ally) wanting to go to hear Ben Goldacre on Sat 24th, kind Russell has organised some discounted tickets. http://publicaddress.net/hardnews/the-dr-g-giveaway/

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Jason Kemp,

    Thanks for this post Hilary. Getting a well researched background and more context from someone who has been in the front lines is so important to all of us.

    Auckland • Since Nov 2006 • 363 posts Report Reply

  • B Jones, in reply to Hilary Stace,

    As some of us joked it was because she thought you could cure autism at pre-school and then those children wouldn't need any resources later on.

    Today's news:

    "Officials have identified one potential fix as spending more money on support for pre-schoolers.

    That is because evidence shows the benefits of early intervention. If funding was weighted to the early years, there would be less demand as a cohort moved through the schooling system, a recent Cabinet paper reasoned."

    Wellington • Since Nov 2006 • 976 posts Report Reply

  • Sacha, in reply to B Jones,

    evidence shows the benefits of early intervention

    Let's see it then.

    Ak • Since May 2008 • 19667 posts Report Reply

  • B Jones,

    I posted that as confirming Hilary's suspicions of official thinking, rather than endorsing that thinking one way or another. They've probably published more of it on the Education website, if it's being quoted in the Herald.

    Wellington • Since Nov 2006 • 976 posts Report Reply

  • Sacha, in reply to B Jones,

    Sorry, that was aimed at the govt agencies, not you. I have not seen any evidence produced so far by anyone to back that general assertion. I'll bet they are generalising from particular conditions.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Brent Jackson,

    Autism, diabetes, deafness, ... all the same sort of thing, eh ? </sarcasm>

    Auckland • Since Nov 2006 • 614 posts Report Reply

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