Hard News: Autism and celebrity
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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 about why Early Intensive Behavioural Intervention (EIBI) is not funded in New Zealand. The quote attributed to Min of Health from ASD Guideline provided was not relevant to the question.
The ASD Guideline attracted national and international negative reaction from behaviour analysts when it was first published in draft form in 2006. Although that did appear to prompt the Ministries of Health and of Education to remove the words “evidence-based” from the title of the Guideline when it was published in April 2008, they did not change any of the multiple errors in the publication. However, the Ministries had started to contract two independent reviews of the evidence regarding ABA for ASD in November 2007. In May 2010 following Ministries’ review of the reviews, the Ministries published “ New Zealand Autism Spectrum Disorder Guideline: Supplementary Evidence on Applied Behaviour Analysis” on their websites (available at http://www.health.govt.nz/system/files/documents/pages/supplementary_paper_to_nz_asd_guideline_applied_behaviour_analysis_final.pdf ).
Despite there being evidence from the reviews for a stronger statement on EIBI, the supplement to the Guideline made a new recommendation: “Early intensive behavioural intervention (EIBI) should be considered as a treatment of value for young children with ASD to improve outcomes such as cognitive ability, language skills, and adaptive behaviour”. Additionally, regarding ABA for ASD in general another supplementary recommendation is: “Interventions and strategies based on applied behaviour analysis (ABA) principles should be considered for all children with ASD”.
Nevertheless, neither the Health or Education Ministries state what they would do if professionals or families consider that EIBI would be valuable for a particular child. As far as I know, nothing. They seem to be ignoring their Guideline selectively against EIBI and ABA.
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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.
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Russell Brown, in reply to
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 us so far. What’s more, such studies can never be fully controlled, for the very good reason that we don’t know what the same kids would be like WITHOUT having experienced the ABA method.
Thanks for commenting David. When I was writing the post I actually had your family in mind as an ABA success story story. Would that be overstating the case?
Yet all the evidence seems to suggest that some kind of intensive intervention therapy in the early years is desirable. New Zealand does rather badly on this front, as much so as it does in providing respite care for affected families, in comparison with other rich-world countries.
Yes. Although for those of us whose children are more able but have different needs, the utter absence of support in adolescence and young adulthood is a real problem too.
If the Sewells helped publicise this drab state of affairs, all power to them. Why should anyone care if it was in the course of him promoting a new album? We’ve all got to make a buck.
Sort of. In the Newstalk ZB interview Geoff Sewell endorsed “treatments” which are, on the face of it, not only unproven but actually dangerous. There are no “heavy metals” left in children’s bodies as a result of vaccinations, and seeking to “detoxify” them with chelation therapy is borderline abusive.
At best, bombarding children with whatever supplements are deemed curative (and that changes all the time in the biomed scene) is likely to be a waste of a family’s limited resources – at worst, it could be dangerous. With diets, potentially there may be some gain – but excluding so many things at once, as the Sewells did, is poor practice. Even if you think it’s worked, you don’t know what has worked. Speaking to Jim Mora on Friday, Sewell described gluten and casein as “drugs” in children’s food. That’s just loopy.
Declaring a connection between his daughter’s autism and home wi-fi is, as I noted above, simply absurd.
So the problem is less that the Sewells champion causes than that Geoff Sewell uses his profile to preach “solutions” that may very well be damaging.
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Ian Dalziel, in reply to
... seeking to “detoxify” them with chelation
therapy is borderline abusive.if not veering into Münchausen syndrome by proxy territory...
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Russell Brown, in reply to
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.
It’s very, very good – not least because there’s a short but useful part on the gut-brain factor. It seems there is a connection for at least some ASD children, but we’re not close to understanding exactly what it is.
The love and acceptance displayed by both families is best thing – but my heart goes out to the second family. Having more than one ASD child is not easy and their daughter’s behaviours are beyond our experience in even the most difficult years.
There were flashes of recognition in Claude’s habitual actions: our older son used to flap his hands and walk on his toes, and we had the experience of him gaining and losing skills in his early years too.
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Russell Brown, in reply to
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 best advice appears to be – eat real food, lots of plants – not very specific or magical. What is also apparent is that fad diets (and supplements) are likely to do most people more harm than good.
Indeed. As I noted above, there's a little bit on this in today's Attitude doco, and it's heartening to see there's work being done on this at Auckland University.
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Russell Brown, in reply to
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 was valuable, even though RDI didn't really work out for us.
We felt that while a number of the key principles of RDI -- things like the difference between declarative and interrogative language -- were very useful to us, the full programme of videotaping family interactions for later critique was intrusive.
Our younger son immediately spotted that there was an active video camera in the room when we tried it and I wasn't greatly comfortable with the idea that we were trying to deceive him. I also felt that too much of the information was captive to the RDI programme and its American creator Steve Gutstein.
Kate, if you're still reading, are there any good public websites with RDI-based "tips" for parents?
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The wonderful Autism and Oughtisms blog weighs into the discussion
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Sacha, in reply to
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.
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Sacha, in reply to
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.
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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 but you're right, it's SO expensive. Around $1000 a week for 30 - 40 hours which for most NZ families is just not going to happen.
My question to you is, do you know if this is the NZ based developmental pediatrician Dr Warwick Smith or the Australian based one as there's two of them I've found on my google research! Be interesting to know...
:)
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Sarah Page, in reply to
Hi Kate,
How does one get in touch with you? (if that's even possible?)
Sarah Page :)
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Ian Dalziel, in reply to
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..
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Russell Brown, in reply to
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. Geoff had no say in the timing and it was unfortunate on our part that we didn’t think harder about how this would look.
Fair enough. But can I ask you: did Geoff Sewell offer up the same "cures" he did in his radio interviews the same day? Did you have to make a decision on what it was responsible to include?
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Sarah Page, in reply to
Fabulous thank you. I like the sound of a therapy being less than a grand a week! ;)
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Angela Hart, in reply to
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 sensibly spent could have had much better results.
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Kate D'Anvers, in reply to
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 Gutstein has relaxed somewhat!
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.
http://www.extraordinarylives.co.nz/faq.html
Hope this helps!
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Russell Brown, in reply to
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!
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