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Access: Autism, ABA and being a bad mother

60 Responses

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  • Sacha, in reply to steven crawford,

    ta

    Ak • Since May 2008 • 19680 posts Report Reply

  • Sacha, in reply to Rob Stowell,

    the Aranui PPP

    bless the private sector

    Ak • Since May 2008 • 19680 posts Report Reply

  • Rosemary McDonald,

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Hilary Stace, in reply to Rob Stowell,

    So more time in uncomfortable taxis at rush hour for more children with special education needs taking them further away from their local communities. Great solution.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Michelle Isaac,

    Yes, I cringed when I saw the 'new miracle that heals autism' on TV. As you say ABA is not new, some of the principles i.e. reinforcement and positive behaviour support have been around a very long time and are already being used successfully in many special education settings.

    To be honest, I have also seen the kind of nasty rhetoric you talked about in ABA circles i.e. you're bad parent if you don't do ABA 40hrs/week or your child will be unhappy for the rest of their life. It really disappoints me as I feel it's untrue and there's absolutely no need for it. Also the idea that parents should do anything and everything to do ABA with their child is ridiculous. Parents do what they can do - some do ABA, some do speech therapy, some do biomedical, some do expensive private schools, some home school - I think it's extremely harmful to judge parents on what they do or don't do. Most of us are doing our best but parents tend to feel guilty about whether we're doing enough for our kids - autism or not.

    However, the idea that parents do ABA so their children will become non-autistic is just as abhorrent to me. For us and many who take part it is to learn critical communication and life skills - not to take away autism. There is no control, that is true but I can categorically say that he would not be communicating the way he does now without intensive teaching. Yes it's expensive and there's a tendency on the part of parents for confirmation bias - that the money they've spent has been worth it. However the expense is mainly due to the effective one on one teaching, which we just could not manage and is not provided in our so-called inclusive education system.

    I wish we were able to teach our son the skills that he needs to get by and have a decent life. It's gut wrenching to admit that actually, our love and support is not enough to do that. ABA has become part of our circle of support and has given us hope that he will be more independent and be able to tell us when something is upsetting or hurting him. I realise that ABA is not for everyone and many cannot afford it, that is why I support the lobbying of Govt for some state funded therapy. So everyone that needs it, can access it. Breaks my heart to see a lady I know, english as a second language, little family support, struggle, to toilet train her severely autistic child and a toddler at the same time. She has been trying for well over a year! I know some evidence-based teaching, at home and school, would really help but there's really nothing available for her. The IHC ASD Communication & behaviour service looks like a step in the right direction but I hear waiting lists are enormous.

    Oh for the caring state! and non-judgemental support of parents!

    Wellington • Since May 2014 • 1 posts Report Reply

  • Hilary Stace, in reply to Michelle Isaac,

    Well said Michelle.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Virginia Brooks, in reply to Michelle Isaac,

    re: 'Most of us are doing our best but parents tend to feel guilty about whether we’re doing enough for our kids – autism or not.'

    Amen to that.

    Great post Michelle.

    Since Jun 2008 • 43 posts Report Reply

  • Miche Campbell, in reply to debunk,

    Oh, honey, get off the cross. Others need the wood.

    Dunedin • Since Feb 2011 • 79 posts Report Reply

  • Miche Campbell, in reply to steven crawford,

    Stephen Hawking was able to speak and write when he entered university. His motor neurone disease did not develop until he was a senior student.

    Dunedin • Since Feb 2011 • 79 posts Report Reply

  • Sacha, in reply to Miche Campbell,

    Oh, honey, get off the cross

    heh

    Ak • Since May 2008 • 19680 posts Report Reply

  • BDB Inc, in reply to Miche Campbell,

    If you say you don't like judgments and want a inclusive community should you should have put debunk "on a cross" ?

    Have you worked with the mother you mention who is trying to toilet train both her child?

    Since Apr 2014 • 61 posts Report Reply

  • Russell Brown, in reply to BDB Inc,

    If you say you don’t like judgments and want a inclusive community should you should have put debunk “on a cross” ?

    I'll take responsibility for that one. debunk, knowingly or not, was insensitive and then reacted in a silly way when I very gently suggested treading more carefully.

    Auckland • Since Nov 2006 • 22747 posts Report Reply

  • BDB Inc, in reply to Russell Brown,

    Sweetie, you did not put him on a cross -she did and then another other thought it was funny.

    Since Apr 2014 • 61 posts Report Reply

  • Russell Brown, in reply to BDB Inc,

    Sweetie, you did not put him on a cross -she did and then another other thought it was funny.

    It rather was.

    Auckland • Since Nov 2006 • 22747 posts Report Reply

  • BDB Inc, in reply to Russell Brown,

    Honey it wasn’t funny.

    Since Apr 2014 • 61 posts Report Reply

  • Russell Brown, in reply to BDB Inc,

    Honey it wasn’t funny.

    This is turning into a threadjack and I don’t like the way you’re addressing me. I’m asking you to move on from the subject now.

    Auckland • Since Nov 2006 • 22747 posts Report Reply

  • BDB Inc, in reply to Russell Brown,

    Before I go I would just like to suggest that maybe if this woman whom Michelle observed having difficulty with toilet training maybe you could help her with this not so small a matter.

    Since Apr 2014 • 61 posts Report Reply

  • steven crawford, in reply to Miche Campbell,

    Stephen Hawking was able to speak and write when he entered university. His motor neurone disease did not develop until he was a senior student.

    Yes, I was aware of that. But with an inability to write or even talk he continues to contribute academically. Which raises the question. Why is Auckland university closing it’s door to all students without evidence of high English literary skills?

    Atlantis • Since Nov 2006 • 4304 posts Report Reply

  • steven crawford,

    Edit: Speak, Because Stephen Hawking can talk.

    Atlantis • Since Nov 2006 • 4304 posts Report Reply

  • BDB Inc,

    Sorry Mr Russell Brown, I did not enjoy Miche Campbell disrespecting debunk . But you now say this way of addressing other members is now seen by yourself as not acceptable or funny.

    Steven C if that is the case Auckland university over value English lit skills( words)... or another paper on unfavourable outcomes for low ELS has effected their enrollment plan. Hawkings has had, and has, many people assisting him, (technically) he can talk and write.

    Since Apr 2014 • 61 posts Report Reply

  • Russell Brown, in reply to BDB Inc,

    Sorry Mr Russell Brown, I did not enjoy Miche Campbell disrespecting debunk . But you now say this way of addressing other members is now seen by yourself as not acceptable or funny.

    I’m going to explain this one more time. What debunk did – telling a parent that their child, who s/he has never met, isn’t autistic and is just a normal little boy – is insensitive and it’s something that autism parents have to put up with a lot. It really does not help when someone says these things.

    Mark’s response was gracious and debunk’s was silly, self-absorbed and pompous. In the circumstances, Miche’s comment was just some gentle humour, as far as I’m concerned.

    If you disagree, you’re welcome to go elsewhere, but I won’t tolerate you repeatedly dragging the conversation back to it when I’ve asked you not to.

    Auckland • Since Nov 2006 • 22747 posts Report Reply

  • debunk, in reply to Russell Brown,

    Try reading ..
    www.theguardian.com/society/2014/mar/30/children-hyperactivity-not-real-disease-neuroscientist-adhd

    I was only trying to have a conversation. Apologies for any offence caused - not intended. No more sensitive NZ blogs for me.

    New Zealand • Since Aug 2012 • 105 posts Report Reply

  • BDB Inc, in reply to Russell Brown,

    If I disagree with your opinion I cannot be on this blog?
    Do I understand you correctly?

    Since Apr 2014 • 61 posts Report Reply

  • debunk, in reply to BDB Inc,

    I didn't think that I "disagreed" with anything ..merely pointed out that some of these behaviour descriptions have changed over the years ..eg autism, ADHD, dementia ..nothing more to say here about it though. All the best ..

    New Zealand • Since Aug 2012 • 105 posts Report Reply

  • BenWilson, in reply to Mark Easterbrook,

    My son is my son, a unique individual who at 2 years old was labelled as being on the autism spectrum. Can I choose to not use that label in the future? Sure. Can I rewrite the past and stop a doctor giving it to him? No I can’t. So apologies if the use of it has caused confusion or bemusement. I’m 3 short years into a long journey.

    Wow, that sums up my situation in a nutshell. So well put. My boy might be autistic. Or maybe he's just different because of his other disabilities, stemming from brain damage. But he has autistic features and that's enough to put him on the spectrum. In the end, does it matter?

    Yes, and no. To me, how I think about him daily, no, it doesn't matter much at all. But when it comes to leveraging support, explaining his situation, and giving people hints about how to deal with him, then it's a useful idea. It talks to a difference in communication style. Sometimes, it does more harm than good, since autism is not the beginning and end of his problems. It might even not be the biggest problem - I don't think it is. Much more severe is his limited eyesight and gross motor development. But the toolkit for dealing with autism is really good. It's good stuff even for non-autistic children - all people communicate through non-verbals, and it's always a good idea to try to judge to what level you're communicating, and what a child can even hear, let alone understand, in an stream of adult words. Sometimes it's a toolbox that isn't very helpful. Then I put it down for a bit.

    Auckland • Since Nov 2006 • 10630 posts Report Reply

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