Public Address | Cafe | Access: Autism: where have we come from and where are we going?

Rosemary McDonald

Wed, 02 Nov 2016 17:35:13 +1300

Where are we going?

Maihihi School down in Otorohanga maybe....

Hilary Stace

Thu, 22 Sep 2016 10:21:51 +1200

I have come across another influential person in the disability world (in the US and internationally) who came to the US as part of the diaspora escaping fascism. Gunnar Dybwad was a German-born US academic and social worker. He seems to have visited New Zealand several times from the late…

Hilary Stace

Fri, 16 Sep 2016 20:55:48 +1200

Latest post on the very good Autism and Oughtisms blog despairs about the lack of understanding about autism at schools as indicated in comments about children speaking with American accents

Hilary Stace

Thu, 15 Sep 2016 16:41:21 +1200

There is nothing wrong, and probably a lot right with early intervention so long as it is sensible, done by professionals and not punitive or crazy (and a lot are). But it is hard to do RCTs with control groups as each child is different and will develop differently regardless.…

Sacha

Thu, 15 Sep 2016 16:26:17 +1200

Ta. From p84:

There is a growing body of evidence that good quality early intervention results in positive outcomes for children with ASD 104, 194–198 (Recommendation 3.1.1). There is some evidence that children who participate in intensive intervention before the age of three have a significantly better outcome than those…

Hilary Stace

Thu, 15 Sep 2016 13:12:55 +1200

There are 'recommendations for education for learners with ASD' in the new NZ ASD Guideline summary p. 12. There are a lot of good ones, graded according to the evidence base. However, none refer to cure or indicating that if you do them the child will be fixed.
http://www.health.govt.nz/publication/new-zealand-autism-spectrum-disorder-guideline

Sacha

Thu, 15 Sep 2016 12:11:32 +1200

They've probably published more of it on the Education website

Nope. No citations in any of the docs I checked here and here.

Brent Jackson

Thu, 15 Sep 2016 12:05:32 +1200

Autism, diabetes, deafness, ... all the same sort of thing, eh ?

Sacha

Thu, 15 Sep 2016 12:01:48 +1200

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.

B Jones

Thu, 15 Sep 2016 11:32:40 +1200

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.

Sacha

Thu, 15 Sep 2016 11:08:01 +1200

evidence shows the benefits of early intervention

Let's see it then.

B Jones

Thu, 15 Sep 2016 10:21:06 +1200

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…

Jason Kemp

Wed, 14 Sep 2016 15:12:09 +1200

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.

Hilary Stace

Wed, 14 Sep 2016 12:40:30 +1200

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/

Hilary Stace

Wed, 14 Sep 2016 10:34:56 +1200

A Life for Ashley petition handover to Kevin Hague Thursday 11 Parliament steps https://www.change.org/p/the-house-of-representatives-a-life-for-ashley-peacock/u/17849159?recruiter=27045134&utm_source=share_update&utm_medium=twitter&utm_campaign=share_twitter_responsive

Sacha

Tue, 13 Sep 2016 14:57:49 +1200

Thanks, Tanya.

Hilary Stace

Tue, 13 Sep 2016 12:02:30 +1200

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

Tanya Breen

Tue, 13 Sep 2016 09:25:34 +1200

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…

Hilary Stace

Mon, 12 Sep 2016 22:14:06 +1200

Here is the link. You can also get it through the Victoria university library website.
http://www.communityresearch.org.nz/research/moving-beyond-love-and-luck-building-right-relationships-and-respecting-lived-experience-in-new-zealand-autism-policy/

dave c

Mon, 12 Sep 2016 21:37:46 +1200

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

Sacha

Mon, 12 Sep 2016 15:38:58 +1200

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.

Hilary Stace

Mon, 12 Sep 2016 15:21:35 +1200

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.

Russell Brown

Mon, 12 Sep 2016 15:04:49 +1200

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…

Hilary Stace

Mon, 12 Sep 2016 14:58:14 +1200

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.

B Jones

Mon, 12 Sep 2016 14:55:29 +1200

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…

Sacha

Mon, 12 Sep 2016 12:54:35 +1200

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.

Carol Stewart

Mon, 12 Sep 2016 12:39:41 +1200

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.

Russell Brown

Mon, 12 Sep 2016 11:57:11 +1200

Holy shit this makes me angry.

Hilary Stace

Mon, 12 Sep 2016 11:29:49 +1200

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…

Brent Jackson

Mon, 12 Sep 2016 10:30:31 +1200

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…

Hilary Stace

Mon, 12 Sep 2016 09:43:43 +1200

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.

Russell Brown

Mon, 12 Sep 2016 09:42:11 +1200

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…

Public Address

Mon, 12 Sep 2016 09:42:10 +1200

Discussion from blog post.