Public Address | Cafe | Hard News: Autism and celebrity

Russell Brown

Mon, 12 May 2014 18:15:00 +1200

I have added an article about some RDI friendly communication tips to the FAQ page of our website. Not sure if self promotion is allowed here so will post the address but totally understand if you want to edit this post.

Well, I did ask!

Kate D'Anvers

Mon, 12 May 2014 18:08:34 +1200

Hi Russell

Good points you raise. The video taping can be problematic with older children (although thankfully younger children tend to either not notice the camera or find it interesting). We have some tips and tricks for getting around this now that weren't available back in the day. And Dr…

Angela Hart

Mon, 12 May 2014 10:14:04 +1200

It's a big call to declare ABA should go to the front of the queue when there are so many other unmet needs.

yes, that's important. Too often it's the fashionable or high profile that is implemented or funded, without evidence to back it up, when the same money more…

Sarah Page

Mon, 12 May 2014 10:05:37 +1200

Fabulous thank you. I like the sound of a therapy being less than a grand a week! ;)

Russell Brown

Mon, 12 May 2014 09:21:53 +1200

On the matter of Geoff and the timing of his album release, I’d like it known that he approached me to do this story over two months ago, well before the release. It was due to TVNZ priorities and workload that the story didn’t come to air until this week.…

Ian Dalziel

Mon, 12 May 2014 08:43:49 +1200

How does one get in touch
Sarah, click on the 'envelope' icon on the same line as Kate's name in her 'post' and that will open an email to her – or thru her website icon next to it.
or here to save going back a page..
;- )

Sarah Page

Mon, 12 May 2014 08:28:13 +1200

Hi Kate,

How does one get in touch with you? (if that's even possible?)

Sarah Page :)

Sarah Page

Mon, 12 May 2014 08:24:59 +1200

Hi Russell,

Thanks so much for writing about this. Really appreciated as our son was recently diagnosed (by Dr Warwick Smith) and we've been bombarded with a heck of a lot of information, some valuable, some not so.

We've got an ABA therapist coming to visit soon for an assessment…

Sacha

Sun, 11 May 2014 21:17:42 +1200

the best advice appears to be – eat real food, lots of plants

I've heard plant fibre helps our gut bacteria thrive, but I'm no scientist and have not delved.

Sacha

Sun, 11 May 2014 21:13:33 +1200

Thank you Dr Mudford. Reading the final supplementary paper, they almost seem to be suggesting some further NZ-specific research is needed. "Considered" is certainly a weak recommendation. Haven't had time to read your own review yet. sorry.

Hilary Stace

Sun, 11 May 2014 14:51:07 +1200

The wonderful Autism and Oughtisms blog weighs into the discussion

Russell Brown

Sun, 11 May 2014 13:45:53 +1200

Thanks Kate. I remember a very good presentation you gave on ABA and RDI in Wellington a few years ago. I liked your enthusiasm for young autistic people. I think that is part of the secret.

We saw Kate with our younger son and also really liked her. The contact…

Russell Brown

Sun, 11 May 2014 13:23:25 +1200

As an aside we are really learning a shitload about how complex the gut is and all the bacteria that are passengers in all of us. It’s pretty clear that having a healthy relationship with your gut is important. What isn’t clear is how to do that – sadly the…

Russell Brown

Sun, 11 May 2014 13:14:46 +1200

I thought that this Mother’s Day edition (deliberate or accidental scheduling) of ATTITUDE was very good, on Ros Hill’s determination for her son with autism and another family who seem more overwhelmed.

http://tvnz.co.nz/attitude/s2014-ep10-video-5950193

It’s very, very good – not least because there’s a short but useful part on the gut-brain…

Ian Dalziel

Sun, 11 May 2014 12:45:25 +1200

... seeking to “detoxify” them with chelation
therapy is borderline abusive.
if not veering into Münchausen syndrome by proxy territory...

Russell Brown

Sun, 11 May 2014 12:31:19 +1200

ABA certainly is a case in point. While some limited studies have suggested that it leads to social improvement here and there, this appears to be in relation to kids who were “high functioning” to begin with. But many, perhaps most, autists are not “high functioning,” so that only gets…

philipmatthews

Sun, 11 May 2014 12:16:39 +1200

I thought that this Mother's Day edition (deliberate or accidental scheduling) of ATTITUDE was very good, on Ros Hill's determination for her son with autism and another family who seem more overwhelmed.

http://tvnz.co.nz/attitude/s2014-ep10-video-5950193

Oliver Mudford

Sun, 11 May 2014 09:52:35 +1200

Gill Higgins was correct to say that therapy based on principles of ABA has the strongest evidence base for any therapy recommended for autism. There was mention of the New Zealand Autism Spectrum Guideline which the Ministry of Health had used to provide an answer to Gill’s question to them…

Marc C

Sun, 11 May 2014 00:04:46 +1200

Quote: "Firstly, the word “suffer” is disliked by many people with disabilties and it’s regarded as offensive by some people on the autism spectrum, who do not regard themselves as “suffering”. In general, it’s best to be cautious about describing anyone as “suffering” from the disability."

Does anybody here now…

Sacha

Sat, 10 May 2014 18:42:42 +1200

one parent's story stood out – how she was offered financial help for a house cleaner and respite care but refused funding for ABA

There's a broader story about how current disability support arrangements make people fit within what's offered, not provide what works for each person and those around…

Sacha

Sat, 10 May 2014 18:38:07 +1200

Thanks for that, Gill.

Gill Higgins

Sat, 10 May 2014 18:22:18 +1200

As the reporter on this piece I thought it would be good to clarify a few things:
As part of my research I spoke at length to Autism NZ, CARD, the Otago Autism Support group, and several parents.
This clarified for me that (a) there is resistance to ABA therapy…

BenWilson

Sat, 10 May 2014 14:15:13 +1200

I've felt that many times, and I wouldn't even count myself as vulnerable any more. Now I just pick and choose. A suggestion for change has to be weighed up in terms of its time cost to expected return ratio. With many strategies available, I can choose one that suits…

Ian Dalziel

Sat, 10 May 2014 13:48:28 +1200

... adjust your gut to eliminate any unwanted effects
from Hosking or Lush exposure.
So essentially they'd pass right through the intestine and gut, to a full stop beyond the colon, unchanged?
Possibly even in a reusable state...

...you could drag Hosking through a toilet
and his hair would still…

Hilary Stace

Sat, 10 May 2014 13:39:41 +1200

There is also a downside of making already vulnerable parents feeling worse that they can't provide all sorts of expensive or time consuming interventions, when such interventions are promoted as essential to progress.

BenWilson

Sat, 10 May 2014 12:37:17 +1200

Note: My experiments have very low potential cost compared to starting/stopping a program like ABA, just to see if the progress stops/slows. But I'd think that some aspects within the program could be amenable to that kind of testing. It could be better than nothing, if one is unsure what…

BenWilson

Sat, 10 May 2014 12:28:35 +1200

What an excellent debate.

But my question is : how do you rationalise that lack of a ‘control’ child’ to measure progress against?

A perennial problem. For my boy, I tend to look at improvement against how he was as the only available baseline. Which is nowhere near perfect, but…

Hilary Stace

Sat, 10 May 2014 10:03:14 +1200

I am also a parent of an autistic son, so I understand that you need to do whatever appears to work to address whatever is framed as the problem.

But my question is : how do you rationalise that lack of a 'control' child' to measure progress against?. ie how…

izogi

Sat, 10 May 2014 08:12:13 +1200

when is jim mora not underwhelming – sadly

It was about what I expected for the type of show he has. He seems more interested in the range of interesting personalities and lets people talk about what they’re keen to say, which I think is okay in that context if…

Darren Walker

Sat, 10 May 2014 03:33:34 +1200

erm – I am Jed's Dad – I would hesitate to say we are comfortably well off. We spent our life savings and borrowed heavily and are still in debt with few assets to our name. Agreed we had access to resources and good advice. ABA was part funded for…

Mark Easterbrook

Fri, 09 May 2014 21:42:34 +1200

I don't really have anything to add to the conversation on this other than to say thank you Russell, again, for your contribution to a better understanding of ASD.

I understand your frustration at having to write this post. But as I've communicated to you elsewhere, wrapping my head around…

Hilary Stace

Fri, 09 May 2014 19:33:33 +1200

Thanks Kate. I remember a very good presentation you gave on ABA and RDI in Wellington a few years ago. I liked your enthusiasm for young autistic people. I think that is part of the secret.

To me ABA seems to me to be about adults imposing their views and…

Wendy Duff

Fri, 09 May 2014 19:24:18 +1200

It should not go unnoticed that Jed's parents are very comfortably well off and such costs would not be prohibitive. Being a family that have done ABA privately for 10 years it does have its positive points as I don't believe my son would have got the same intensive learning…

Kate D'Anvers

Fri, 09 May 2014 18:23:02 +1200

Disclaimer: I am a child psychologist and have worked as an autism specialist for the last 15 years. I was once was an ABA therapist and programme designer but became disillusioned at the 'results' ABA achieves. I decided to investigate what other countries were doing in terms of current therapy…

Sacha

Fri, 09 May 2014 17:34:27 +1200

waiting for science to figure it out

Most parents don't have a few decades to spare while politicians decide this stuff is important for scientists to focus on.

What makes the biggest immediate difference for most families containing disabled young people is sustained and well-informed support, not some magic pill…

kmont

Fri, 09 May 2014 17:28:52 +1200

That really it an interesting thing to share, thank you. This agrees with my experiences in Japan, particularly teaching Junior High School and teaching the odd class with drop out/hikikomori kids.

Bart Janssen

Fri, 09 May 2014 17:20:51 +1200

This is why we have science: if there is a plausible mechanism, then it can be investigated.

This.

But also recognizing that when placed in a situation of stress such as discovering your child has any kind of ailment it is entirely understandable that waiting for science to figure it…

David Cohen

Fri, 09 May 2014 17:01:10 +1200

One of the many problems facing those grappling with the mysteries of autism is the variety of discrete conditions it covers. No two autists are the same: show me somebody with autism, and I'll show you ... somebody with autism. And no two autists will respond in precisely the same…

Sacha

Fri, 09 May 2014 16:54:04 +1200

The internet changed all of that. The vast majority of information people get now is unverified.

More like you can quickly check what the news media are claiming as truth.

Geoff Lealand

Fri, 09 May 2014 16:52:03 +1200

Which is really one of the primary roles of education these days — to distinguish knowledge from information, truth from noise, authoritative data from the spurious. One problem I frequently encounter with students is that many of them tend to regard everything on the web as of equal value, irrespective…

SteveH

Fri, 09 May 2014 16:29:08 +1200

I have been impressed with critical thinking skills that my son’s generation ( born in the 2000’s ) have received. That is the best defense against bad information.

People used to trust media – if they read something in a newspaper, or saw it on the news, or read it…

Sue

Fri, 09 May 2014 16:22:00 +1200

when is jim mora not underwhelming – sadly

WaterDragon

Fri, 09 May 2014 16:05:58 +1200

The interview with Jim Mora was underwhelming. I t might give us all peace of mind if he wasn't rather too evidently pursuing commercial motives using his daughter, It's kinda tacky this.

Sue

Fri, 09 May 2014 15:59:28 +1200

i think this like so many unknown things everyone wants to talk about 'cure, cure, cure' i get this all the time with CFS. I get this all the time with Depression. With both there is no one cure, fits al there is so far no CURE!
but the most…

Bryan Spender

Fri, 09 May 2014 15:20:17 +1200

You do know that herbal highs are a cure for cancer ? :-)

Bryan Spender

Fri, 09 May 2014 15:17:59 +1200

The credulous interview style of television and radio interviewers is annoying but they are only a dripping tap in front a tsunami of internet pseudo-science.

I have been impressed with critical thinking skills that my son’s generation ( born in the 2000’s ) have received. That is the best defense…

Grant McDougall

Fri, 09 May 2014 14:47:59 +1200

As soon as I saw the start to Seven Sharp last night I immediately thought "This is as bogus a load of quackery as when One News opened with a story about NZ greenlip mussels being a cure for cancer a few years' ago."

Martin Lindberg

Fri, 09 May 2014 14:33:21 +1200

I can tell you that gluten is the popular bete-noir for every dietician, naturopath and homeopath at the moment

Gluten is bad shit, man!

http://www.youtube.com/watch?v=ktgNuQ61NHE

Peter Casey

Fri, 09 May 2014 14:05:41 +1200

I was watching Myth Busters at the time. They showed that with the correct diet you could adjust your gut to eliminate any unwanted effects from Hosking or Lush exposure.

Luke Williamson

Fri, 09 May 2014 13:51:09 +1200

Micro-discussion . . . As the father of daughter with coeliac disease (NO gluten allowed – not just because you feel like trying out a low-gluten diet), I can tell you that gluten is the popular bete-noir for every dietician, naturopath and homeopath at the moment. It seems to be…

Ianmac

Fri, 09 May 2014 13:50:37 +1200

The return to Behaviourism in the context of helping improve the lot of Autistic may be a great help. By breaking down every action into measurable steps which have measurable outcomes may help.
Unfortunately the political push these days (Parata) is to foist Behaviourism onto school programs. (National Standards.) This…

Geoff Lealand

Fri, 09 May 2014 13:47:13 +1200

I don't know whether it was because I emailed them (home today, nursing a 'orrible cold) but Jim Mora referenced Russell's thread in his interview with Sewell just now. I suggested that if the conversation strayed from the first purpose of plugging his new album (ever so middle-brow!), they needed…

Sacha

Fri, 09 May 2014 13:27:37 +1200

and will do more stories in the future

Glad to hear it. Can I suggest contacting some of NZ's actual autism experts when you do those.

Russell Brown

Fri, 09 May 2014 12:26:03 +1200

I accept your points about the tweet and headline online. ABA is not new and it’s not a miracle cure. All of which we were careful to point out in the on-air programme but, in this case, our left hand didn’t talk to the right hand and I’m sorry we…

nzlemming

Fri, 09 May 2014 12:25:03 +1200

Actually, Seven Sharp was by far the best of the three. The Newstalk interview with Hosking was insane.

Well, Hosking.

graeme muir

Fri, 09 May 2014 12:06:10 +1200

I accept your points about the tweet and headline online. ABA is not new and it's not a miracle cure. All of which we were careful to point out in the on-air programme but, in this case, our left hand didn't talk to the right hand and I'm sorry we…

Moz

Fri, 09 May 2014 12:03:31 +1200

Bah, rubbish in the media. Bah, I say, Bah!

For every medical condition, some people will get worse, other people will get better. ... In many cases, more severe the disease, the more likely it is that person will transition to a less severe form of that disease.

It even…

Craig Ranapia

Fri, 09 May 2014 11:50:28 +1200

My own sons have a various times, made rapid and lasting gains in their interactions with the world.

Oath. I think of Jimmy as a very dear friend, and I hope a contributing factor is (in no small part due to you and places like this) I don't see him…

George Darroch

Fri, 09 May 2014 11:44:35 +1200

For every medical condition, some people will get worse, other people will get better. If you’re interested in a particular ‘cure’, then you will notice that some people will get better at the same time as the ‘cure’ is administered. In many cases, more severe the disease, the more likely…

TracyMac

Fri, 09 May 2014 11:42:42 +1200

If someone is going to turn their promotional blitz into a shill for various less-than-proven therapies, I think that essentially gives the interviewer licence to stop with the promotional routine and start playing hardball with these "facts".

Perhaps that would encourage Sewell to stick to the interview topic. Alas, can't…

Allan Moyle

Fri, 09 May 2014 11:37:37 +1200

I note that Geoff Sewell is on RNZ Afternoons w/Jim Mora today, no doubt being given yet another unchallenged session to spout his BS science and cure

Hebe

Fri, 09 May 2014 11:18:55 +1200

Fuckers. Those journos should know better: they should all be able to recognise tinfoil-hattery. Accepting the tying of autism "cures" to a record launch is disgusting.

[Literal in third par care/cure]

Kumara Republic

Fri, 09 May 2014 11:11:08 +1200

Parents who have not in the first instance accepted who their children are may be inclined to credit any improvment, real or perceived, to dubious therapies.

When I was 14 I was taken to an ‘ear, nose & throat specialist’ under the belief that my excessive blinking was allergen-related, specifically [[http://www.quackwatch.com/01QuackeryRelatedTopics/candida.html|yeast…

Hilary Stace

Fri, 09 May 2014 11:06:57 +1200

Thanks Russell. I see that Geoff Sewell is playing in Wellington tonight. (And disclosure – I have helped with an autism fundraiser associated with one of their earlier visits soon after their daughter had her 'tragic' diagnosis).

Russell Brown

Fri, 09 May 2014 11:00:43 +1200

So I guess Seven Sharp turns out not to be journalism. Oh, wait… that’s not news.

Actually, Seven Sharp was by far the best of the three. The Newstalk interview with Hosking was insane.

Shaun Lott

Fri, 09 May 2014 10:46:42 +1200

That doesn’t mean we in the media are absolved of responsibility for what they do with that airtime.

Though the term has been much abused in the climate change 'debate', surely the onus is on the journalist to provide some sort of balance in the context of the show? A…

Kumara Republic

Fri, 09 May 2014 10:36:06 +1200

It turns out that the Sewells’ appearance was part of a publicity blitz tied to Geoff’s new album
As Laurence Olivier once remarked, “money, dear boy”.

Seriously though, this can’t be allowed to go unchallenged. The Royal Society of NZ and others need to call bollocks on it. Quickly.

Gareth Ward

Fri, 09 May 2014 10:29:15 +1200

was part of a publicity blitz tied to Geoff's new album
Yech.

Public Address

Fri, 09 May 2014 10:29:15 +1200

Discussion from blog post.