Access: Autism, ABA and being a bad mother
56 Responses
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http://www.radionz.co.nz/news/national/244169/english-standards-not-dropping-union
link to steven crawfords post,
you're welcome!
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Hilary Stace, in reply to
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.
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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!
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Hilary Stace, in reply to
Well said Michelle.
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Virginia Brooks, in reply to
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.
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Miche Campbell, in reply to
Oh, honey, get off the cross. Others need the wood.
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Miche Campbell, in reply to
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.
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Sacha, in reply to
Oh, honey, get off the cross
heh
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BDB Inc, in reply to
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?
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Russell Brown, in reply to
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.
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BDB Inc, in reply to
Sweetie, you did not put him on a cross -she did and then another other thought it was funny.
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Russell Brown, in reply to
Sweetie, you did not put him on a cross -she did and then another other thought it was funny.
It rather was.
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BDB Inc, in reply to
Honey it wasn’t funny.
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Russell Brown, in reply to
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.
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BDB Inc, in reply to
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.
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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.
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Russell Brown, in reply to
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.
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debunk, in reply to
Try reading ..
www.theguardian.com/society/2014/mar/30/children-hyperactivity-not-real-disease-neuroscientist-adhdI was only trying to have a conversation. Apologies for any offence caused - not intended. No more sensitive NZ blogs for me.
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BDB Inc, in reply to
If I disagree with your opinion I cannot be on this blog?
Do I understand you correctly? -
debunk, in reply to
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 ..
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BenWilson, in reply to
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.
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Certainly I don't need to hear anything about a cure for my boy's troubles. The cause of most of them is clear. It's a crying shame, though, that he gets tremendous support just because what happened was an accident, when all the therapies that have done him such good are not available without huge cost to families with spectrum children just because the cause is not really known. God knows from many of the parents I've met, they need it a lot more. Not because it will "cure" their child. But because it helps them cope, and to get on and gives them tools and support and networks to deal with what will be a lifelong problem in many cases.
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Russell Brown, in reply to
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 ..
I felt you were being insensitive in doubting the diagnosis of a child you have never met. Autism parents encounter this kind of thing quite a lot and it doesn’t help. You repeatedly used the word autistic in quotation marks as if it wasn’t a real thing.
I asked you to tread carefully, I used the “please” – and you responded by having a hissy fit, playing the martyr and then offering an irrelevant link in a way which implied, again, that autism isn’t a real thing. Suggesting that Temple Grandin doesn’t know herself is silly. I tried to be nice about this and you played the wounded party and sneered about people being sensitive.
But to go back to your very first comment:
Before the birth of the label “autistic” in the 1980s developmental psychology courses at university referred to such children as “withdrawn” or as “slow developers” – certainly less judgemental and less “clinical” decriptions for such a multivariate personality state..same with the all encompassing term “dementia” which can have 20 or more physiological and/or environmental causes?
Autism isn’t some trendy modern diagnosis and the idea that we should revert to diagnoses of “withdrawn” or as “slow developers” – which, let’s face it, aren’t far off “retarded” – is not helpful. No one here thinks autistm is a bad or judgemental word. It’s something we can work with, something which describes a very wide range of symptoms, by no means all of them negative.
You’re fond of touting your credentials on this site, but you clearly don’t know what you’re talking about in this instance. Please, read the latest edition of the DSM and what it says about autism spectrum disorders.
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Russell Brown, in reply to
If I disagree with your opinion I cannot be on this blog?
Do I understand you correctly?People disagree with me all the time. But the reader community here is pretty special and it works in part because I'm here most of the time, moderating as I feel is necessary.
I saw what Miche said as a gentle, not-undeserved ribbing and I explained my reasoning in what I had said to debunk. You chose to respond with patronising snark directed at me ("honey", "sweetie"). I do need you be a bit less querulous than you've been in various threads. And I need you respect my call. It's my place.
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I've spent the day with my family and some dear sailing friends of my stepfather consigning his ashes to his beloved sea. We discussed many things, including autism, without rancour. I feel sad (and angry) when people play petty games with something so profound in many of our lives.
If you do not know about something, it's OK to listen. Show some respect for those who do.
Cheers to all the good listeners and speakers who have enriched my life. My stepdad was one of the best.
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