I've read in a few places lately about early autism diagnosis and the (debatable) importance of early intervention. There was an interesting discussion on the Autism Parents Forum here. Then there have been some thoughtful blog posts by various people including the always astute Abfh and one by Joey's Mom.
As well as that, I've been reading more and more in the Irish media and on Irish blogs, about the campaigning by an Irish ABA lobby group called Irish Autism Action (IAA) and the recent court action by the parents of a 6 yo autistic child, who wanted to force the state to pay for 30 hours/week of ABA therapy. They lost the case but the state has just been ordered to pay them €61,000 in costs, to cover the delay they faced in gaining a diagnosis, and because the boy was denied any services until he had a firm diagnosis. The story is reported in the Irish Independent. In the same paper, is an article about a grubby little ad by the aforementioned IAA, which was banned by the broadcasting agency.
The Irish general election next week, has seen all sorts of people, journalists and politicians in particular, talking about autism. The only game in town, as far as they seem to be concerned, is ABA for the children. Alternative educational methods are ignored, as are the needs of older autistics.
For us, as far as early detection and intervention are concerned, I suspected Duncan was autistic when he was about 18 months old. I looked up 'autism' in a paediatrics book, and it didn't describe Duncan at all, since the symptoms listed were things like 'total disregard of other people...highly resistant to being held by care-giver...'
When he was 2, I thought about autism again and this time I turned to the Internet. I came across CHAT and after a few short minutes, I knew for certain that he was autistic. Over the next few months, what I read convinced me that I had to go into action, get him loads of ABA and hound the education board to pay for it. Then after hours of therapy a week, when he was 4 and going to school, he be in a mainstream school. I did not want a child of mine going to one of those special schools. I got over that.
After a while I investigated ABA further, and attended a talk by a provider in London (LEAP). I was not impressed. I knew that ABA, at least how that organisation were offering it, was not for Duncan. For one thing, it was prohibitively expensive, and the likelihood of getting the education board to fund it was very low. But mainly, I knew that the way the programme was explained to me, it would have made Duncan very miserable. Also, the more I heard them focus on the Lovaas claim that the children could be made 'indistinguishable form their peers', the less I trusted them. They kept harping on about a study published in 1987. Was that really the best 'evidence of effectiveness' they could offer?
Instead I discovered an nursery for children with autism and related conditions, which Duncan attended for 4 mornings a week for over a year. They used aspects of TEACCH, the Hanen approach to promote communication, and some PECs . One of the 2 main teachers was an excellent speech therapist and she helped Duncan tremendously. The focus there was on learning and play, but mainly on helping the children to communicate.
The NAS EarlyBird parental training programme also helped me gain knowledge of how to help Duncan. And now he's learning at home full time, he's speaking perfectly well enough to let us know what he wants and needs, and to give orders now and then (as when he told me yesterday after we visited my brother and they were our car ready to go home; 'Mummy, get in the car, now!') He's learning to read, both by using the computer to find films and characters etc, and via phonics lessons with me. He's learnt how to draw beautifully (I think, though I'm biased!) on paper and using computer art programmes. Earlier he drew a Percy Engine on Microsoft Paint, not the easiest of programmes, but his choice recently. It was fantastic. I actually had some little tears of pride and surprise when I saw it, but even though I saved it, he cleared it and saved over the file.
So what I'm getting at, is there is no reason to think that it gets harder for anyone to learn as they get older. There is no 'window of opportunity' after which the child is damned. ABA is not necessary, though if it works for someone else, fine. I don't understand however why all these new-style ABA programmes that people talk about are still called ABA though. Is it just shorthand for 'eclectic mix of speech therapy, occupational therapy, play, child-led learning, with a hint of discrete trial training'?
I like your last line "it is a just a shorthand" for those other therapies. This is why it is so important to think out of the ABA box. Floortime, play, and addressing the child's learning style is so important in teaching. Period. Adam does well when his teachers begin to listen to him and build on what he already does well.
Thanks for the link... I suspect they're calling other things ABA just to make it easier to get funding.
I agree with what you have both written.
It's a shame that there is so much time and effort spent on campaigning for ABA, and that so much of it is carried out in a way that denigrates autistic people. Then it turn out that what many of these campaigners want is not actually really ABA anyway.
I'd support anyone campaigning for better educational provision, better training of special education teachers, more resources for classrooms and smaller class sizes, more speech and occupational therapists, more leisure and sports facilities for autistic people. But there is no need to be disrespectful in the asking.
I think that most of the disagreement about the merits of ABA has to do with the fact that the quality of services and availability of funding sources vary from one region to another. Sounds like in your area, it was not the best choice, and you were able to find a good program that worked better for Duncan and the whole family. But where I live, ABA is offered intensively and completely funded by state and school district. There aren't many other options available so we stuck with it. And so far the results are excellent. But my son also gets OT and Speech Therapy (more Hanen/Floortime-like), while at home on free time I apply many principles of Pivotal Response and Floortime. I like the combination of the best of what all the therapies have to offer.
Combining things in a way that suits your child, sounds like the most sensible approach to me.
Yes, ABA isn't funded here. Well, there have been a few people who have manged to get state funding on an individual basis.
However, the point I've made still stands; what people are calling ABA, is often a whole mixture of disciplines, with just a bit of Lovaas type ABA.
I'd have been upset if the only therapy/education on offer to us when Duncan was 2 and 3 years old, was ABA. I know that he learns much better, as I'm sure most people do, when he is intrinsically motivated.
Many behaviourists are able to talk about any and all teaching and intervention as if they are behavioural (ABA). The tendency does seem to be to call everything ABA in order to get funding.
I can see everything as behavioural, but I can also see things as not behavioural. Sure, I used my ABA training when I was trying to get that 6yo boy to print a sentence last Tuesday, in that I maintained a calm disposition and didn't respond to his attempts to get out of doing the work, but there are many things about what I did with him that day that probably would be frowned upon by an ABA consultant. However, you will notice - if you read my blog entry about that incident - that my method did succeed in the end, and both of us were satisfied with the result.
I have a parenting book called 'Kids are worth it' by Barbara Coloroso. There's a line in it "If it works and leaves a child's and my own dignity intact, do it".
That seems to be a good guide when teaching a child, and sure covers what you did with that little boy.
Sharon, thank you for this post. I think more parents need to speak out about the other options. It certainly has become the main focus here and no one therapy works well for everyone. And there are known issues around generalization. We have a lot of parents of children with autism pushing for ABA but so far our agency has resisted and is taking a more ecclectic approach.
Oh you're welcome Heidirific!
I'm not surprised that parents are pushing for ABA. It has been oversold.
There are no autism support charities in Ireland, that I can see, save the ABA lobby group, IAA, and the seemingly small scale Irish Society for Autism. They run several residential facilities for autistic adults, but appear to be very quiet regarding all the recent media attention.
I e-mailed them last week to see if they might think about updating their links pages to include the writing of autistic adults, but have had no response.
Therefore there are no active national options of support and advice for people who are not pushing for ABA.
The popularity of ABA in this area is that it is very EASY to get it paid for (comparatively speaking). Just sue the school, present the available peer-reviewed research, and bingo! you get a one-on-one education for your child. That's IDEA for you.
Trying to get other interventions is far more difficult because of a lack of published research. Floortime? Forget it, you're on your own. TEACCH? Well, that's considered a classroom model, and most of our teachers aren't trained in it.
The trick really is to individualize. It works for non-disabled kids, too. Figure out what works for the child, and do that. Most school systems don't want to do that, because... well, not only is it expensive, but it requires effort on their part. A double-jeopardy, I'm afraid.
Thanks for your comment Joeymom, and for explaining how it works.
That's the reason why I'm worried by all the shouting about ABA. Most people want something for their children, especially when they are younger and just diagnosed, and if all that's on offer is ABA, many will take it thinking it's better than nothing. I don't think it's right that ABA therapists and organisation should be taking all this state money for what is no more proven a method of helping autistic children than any other.
I'm not sure what the answer should be. I personally think that my son is well off learning at home, and I don't want any state money and the inevitable interference that would bring, in how I educate him. I don't want to be forced to submit timetables, a curriculum, agree to testing or home visits. For most people, this is not something they would choose to do, and their children also deserve an individualised education that works with their autism, not against it. Perhaps it's time to speak up against the ABA monopoly (or attempted monopoly) and let the education authorities know about the evidence for individualised, implicit autistic learning.
I would not mind so much if they actually did applied bevioural analysis. You know, analyse the situation to see what is behind a problem behaviour and then alter environment to help the child. But Lovaas has always been about using behaviour modification to change the child. The child is the pasive object to be altered without any choice or opportunity to consent. in the matter.
Hi Mike. That's an excellent point.
My husband asked the psychiatrist who officially diagnosed Duncan what he thought about ABA. He answered that 'small letters aba, but not ABA TM, could be useful for certain situations.' He probable meant true behavioural analysis, as you have described.
The ABA I see at home with my child doesn't focus as much on "behavior modification", but on LANGUAGE and SOCIAL SKILLS. They're getting my kid to respond, to ask questions, to make comments, to learn new vocabulary much faster than before therapy. It's also improving his joint attention and willingness to interact with other people.
AAM, as we've been discussing, and as Mike just pointed out, that's not true Applied Behaviour Analysis. They call it that, but that's not what it actually is.
Real Applied Behaviour Analysis looks at a behaviour, looks at the reasons for it, and then develops a plan to change or replace the behaviour. Using rewards and stuff to encourage joint attention and language development isn't really Applied Behaviour Analysis... it's just plain old good teaching.
For me, as a professional working with children with ASD, I despair at each new "therapy" that comes on the market offering parents a "cure". I'm currently running an EarlyBird course in one of the areas I work in & I think its a great programme. Its not perfect but it doesn't claim to be. The thing that most of these therapies have in common (ABA, Sonrise etc) is that they focus on lots of 1:1 attention for the child. Its this that I think is likely to lead to change to whatever else the therapy claims to be doing. The evidence base just isn't strong enough in my opinion & whilst I wouldn't tell a parent they should or shouldn't do something I'd try to make sure they had all the available information before the decided to fork out huge amounts of cash.
Hi Helen and thanks for your comment.
I certainly benefited from the EarlyBird program. Like you said, it's not perfect, but it doesn't make over-inflated claims of effectiveness. It merely does what it says; helps point parents on the way, gives them a few starting points to recognise and build on the communication their child is engaged in and to understand the reasons for various behavior. Unlike the various therapies that are marketed as 'cures', it aims to educate the parents, and thus help the children.
Michelle Dawson points to Dr Gernsbacher's article, 'Toward a Behavior of Reciprocity', which explains true reciprocity and shows how a trial of 'reciprocity training' of parents, helped their children.
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