Hard News by Russell Brown

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Hard News: Autism and celebrity

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  • WaterDragon,

    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.

    Behind you • Since Jul 2011 • 79 posts Report Reply

  • Sue,

    when is jim mora not underwhelming - sadly

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • SteveH, in reply to Bryan Spender,

    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 in a book, it was likely to be true. The internet changed all of that. The vast majority of information people get now is unverified. You have to develop the ability to critically analyse it all because so much of it is contradictory. Naturally younger generations have adapted faster.

    Since Sep 2009 • 444 posts Report Reply

  • Geoff Lealand, in reply to SteveH,

    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 of the source (and date of publication). I refer to this as The Daily Mail Problem, where students have no awareness of the nature of the source.

    Screen & Media Studies, U… • Since Oct 2007 • 2560 posts Report Reply

  • Sacha, in reply to SteveH,

    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.

    Ak • Since May 2008 • 19740 posts Report Reply

  • David Cohen,

    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 way to a particular therapy.

    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.

    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. 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.

    Brooklyn • Since Jan 2009 • 10 posts Report Reply

  • Bart Janssen, in reply to George Darroch,

    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 out is very very hard.

    Science is our best tool for understanding things like autism - but goddamn it's slow and filled with false leads and hope.

    I loathe the shysters and snake oil salesmen with a passion but I get why it's so tempting to believe.

    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.

    Auckland • Since Nov 2006 • 4460 posts Report Reply

  • kmont, in reply to Kumara Republic,

    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.

    wellington • Since Nov 2006 • 485 posts Report Reply

  • Sacha, in reply to Bart Janssen,

    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 or potion or machine that goes ping. That, and knowing they are not alone.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Kate D'Anvers,

    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 models. My research lead me to the United States where I trained in Relationship Development Intervention (RDI), a parent lead therapy programme modelled on the developmental path that neuro-typical children follow.


    It is laughable that the media is picking up on ABA being a 'new' therapy and downright dangerous that they are labelling it as a 'miracle'. ABA is by no means new and is considered outdated by many specialists in the field. It's methodology, which uses rewards to 'train' desired behaviours in children, has inherent problems too numerous to outline here but I would encourage interested parties to do some research on this.

    What no one seems to have mentioned is that there ARE other options that have arguably more positive outcomes for children and their families and are far more cost effective (RDI for example is approximately a tenth of the cost of ABA). An interesting comparison of ABA and RDI can be found via the link below.

    http://www.extraordinarylives.co.nz/uploads/3/1/2/4/3124034/therapy_comparison_aba_and_rdi.pdf

    Auckland • Since May 2014 • 2 posts Report Reply

  • Wendy Duff, in reply to graeme muir,

    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 at school as he got at home doing ABA 1:1. He was more severe than Sienna and I think here is the answer to what development going forward these kids project. - it is really reliant on how severe the Intellectual Disability part of the diagnosis is.

    Auckland • Since May 2014 • 2 posts Report Reply

  • Hilary Stace,

    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 expectations about children and behaviour. Training. Work . RDI seems much more child centred, fun and about working with the child's own interests. If I was an autistic child I know which one I would prefer and respond more positively to.

    And hello Wendy. For those who don't know her Wendy is one of the most knowledgeable people there is about autism.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Mark Easterbrook,

    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 my own son's diagnosis has been made that little bit easier thanks to what you share here.

    Auckland • Since Nov 2006 • 264 posts Report Reply

  • Darren Walker, in reply to Wendy Duff,

    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 us for a year but there was a heck of a fight to get it. Biomed was essential in my opinion; this was difficult for me to accept at first, I have a degree in Medical Laboratory Science from Otago. But you don't have the luxury of time to wait for science, if you see results you keep doing it.

    United Kingdom • Since May 2014 • 1 posts Report Reply

  • izogi, in reply to Sue,

    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 you know what sort of show it is and that it’s not critical and confrontational journalism.

    I’m not sure what to expect from when he shifts to Checkpoint after 5pm. Hopefully he has a very different persona.

    Wellington • Since Jan 2007 • 1141 posts Report Reply

  • Hilary Stace, in reply to Darren Walker,

    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 do you know that the same progress wouldn't have happened just with the normal development trajectory, engaged parenting and wider family input, inclusive education, welcoming community activities or any other variables?

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • BenWilson,

    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 there's very little else to go on. He may have made the same progress without any of the many strategies we've been trained in, and all the work by therapists. I highly doubt it, but we really can't be sure.

    As with so much medicine, there may be a ton of science behind it, but every patient is to some extent an experimental subject with the one data point to work on. If someone appears to be flourishing under an unorthodox program, we tend to stick with it.

    Sometimes, when I think the harm would be small compared to the knowledge gained, I do the experiment of withdrawing something that appears to be working, just to see if whatever it was addressing worsens.

    For instance, a big favourite of most of the therapists who focus on autism is for us to use visuals to help communicate. I tended to think they served limited purpose in my son's case and were a great deal of effort to continually maintain. The reason I thought they were limited was because he is sight impaired and hyperverbal. He has an excellent auditory memory, particularly for lists, and loves to be given lists and to make them.

    But I tried it anyway, and some of the things that prompted it improved. But after a while, having spent many, many hours making visual checklists for things, essentially comic strips of the process for such things as toileting or getting ready to leave the house, I wondered if it was the pictures or something else that were working here. So I took away the pictures, and just made the lists as written checklists. Things remained as they were.

    So I concluded that it was actually other factors at work here. The focus on order and routine, perhaps. Maybe, also, the fact that such a focus caused me to become more organized about the things that had previously been triggers for conflict. Particularly around time to leave the house. I found it very hard not to show nonverbal signs of frustration, since the non-cooperation would mean that we would become late for things. But a checklist given with enough time was a very reliable cure for this for my situation. I make no general claims about this for other children on the spectrum. Mine's like all of them, unique. His multiple disabilities (vision and low muscle tone) have their individual flavour, and I think he has some unusual strengths on account of them.

    I may also repeat the experiment in future, and find different results. Children change as they mature. And always the opinions of trained therapists are going to count for a lot. I have to be on the watch for hubris, of course. The most obvious one is that a paid therapist will usually want to continue to get paid, and they might therefore be making recommendations just to maintain their own relevance, after the time for that has really passed. The only real way I can know is to continue to follow their suggestions, and see if any of it is helping. So far the hit/miss ratio has been pretty high.

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • BenWilson,

    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 is actually the cause of improvements. I don't know whether that's even part of how the program works.

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Hilary Stace, in reply to BenWilson,

    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.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Ian Dalziel, in reply to Peter Casey,

    ... 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 look like that...*

    I can see the subtitled warnings now:
    Please Do Not Adjust Your Gut
    Normal Transmission
    Will Return Shortly

    * I hope no one's paid to make it do that...
    (sorry, I usually have the mute on when
    7 sharp flicks by, and that
    'couldn't-give-a-toss-tonsorial-treatment'
    always jumps out at me ...)

    Christchurch • Since Dec 2006 • 7950 posts Report Reply

  • BenWilson, in reply to Hilary Stace,

    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 the situation. Also, a lot of suggestions have crossover with quite basic "good parenting skills" for children who are "normal". Not losing one's temper, for instance, is good advice at all times. It's up to me to decide whether I feel helped or patronized by a particular suggestion for a strategy. I usually opt to presume the intention is the former. Just as they say "You're the adult, remember", I tell myself "They're a professional, remember".

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Gill Higgins,

    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 in this country and (b) many (not all, but many) parents would desperately like financial help to give their children this therapy. I accept they would like help with other aspects of autism care, but for many this is the priority. See http://www.oamarumail.co.nz/featured/parents-set-up-autism-trust/
    I discovered several trusts had been set up around the country to help parents get ABA treatment for their child, and one parent's story stood out - how she was offered financial help for a house cleaner and respite care but refused funding for ABA which she feels MAY have given her son a better future.
    All of this made me think it was valid to look at these two families who had achieved such impressive and wonderful results, and to allow them to express their view - that funding for ABA could potentially help many other children.
    I acknowledged that ABA had its critics and we invited the MoH to give their point of view in an interview. Instead they sent me a nonsensical statement.

    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.

    The feedback we have had has been overwhelmingly positive - from families expressing heartfelt gratitude that their frustration has been raised.

    Auckland • Since May 2014 • 1 posts Report Reply

  • Sacha, in reply to Gill Higgins,

    Thanks for that, Gill.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Gill Higgins,

    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 them. Could check out some of the current trials in that policy area?

    Ak • Since May 2008 • 19740 posts Report Reply

  • Marc C,

    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 understand how WINZ now these days interpret "disability"? Has anybody heard of the flawed "science" and purchased "evidence based" "research" by one "Professor Mansel Aylward" from the UK, who happily signed up with UNUM Provident insurance, one of the largest health and disability insurers in the world, who have very vested interests, and who were also convicted in various courts in the US for breaking the law by how they used "assessments" and denied insurance payouts to rightful insurer claims?

    Well, the truth is out, and it is not pleasant. The UK followed a welfare model that is geared to dis-entitle disabled and other beneficiaries from the support they used to get, and now we get the same here, thanks to the "servants" coming from the UK, that "sell" the "medicine" here. It is disgusting, and it appalls me, that no mainstream media is catching on, and researching and exposing all this. At least some people do research and use other forums to publish what goes on:

    WORK ABILITY ASSESSMENTS DONE FOR WORK AND INCOME – PARTLY FOLLOWING ACC’s APPROACH: A REVEALING FACT STUDY

    http://accforum.org/forums/index.php?/topic/16092-work-ability-assessments-done-for-work-and-income-%E2%80%93-partly-following-acc%E2%80%99s-approach-a-revealing-fact-study/

    So have a read, study and get back to honesty and do your jobs, please, MSM.

    Auckland • Since Oct 2012 • 437 posts Report Reply

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