7 Feb 2008

Irish Autism Advocates Obsession with ABA

Yesterday's Irish Independent contained a story about a family with two children who "suffer from autism."
Both our beautiful boys have autism
How we have coped since discovering that ...

County Wicklow parents Cian and Yvonne O'Cuanachain had battled for 68 days in the High Court for the State to provide Applied Behavioural Analysis (ABA) education for their son, Sean, who is autistic. Last week they lost their €2m fight. The courts ruled they had produced insufficient evidence to prove their case, and said they must meet their legal costs. Their's was regarded as a test case, so the verdict spells bad news for thousands of other parents round the country, including Ken and Janice Berry from west Dublin.

These people were not claiming that their son deserves a good, suitable education. They were claiming a very specific style of therapy, one which is often erroneously claimed to be the only treatment for autism with any scientific validity.

The Berrys, in common with many parents, believe that ABA is essential for the educational and social development of many autistic children.

I take issue when a parent's 'belief' is taken as evidence that vaccines caused autism, or that homeopathy helps autism. I take issue with the statement above too; where is the proof that "ABA is essential to the educational and social development" of any autistic children?

The ruling also places a new question mark over over the future of their son, Aaron.

How? Are they claiming that without ABA his future prospects are diminished?

The article then details the "tragedy" of two autism diagnosis in the family, and the delay in attaining these so that they lost, "valuable time in each case."

The boys are 6 and 5 years old. The 6 year old was diagnosed 17 months ago and the 5 year old, 6 months ago. Since the parents noticed signs of developmental delay in their first son when he was only 2, it is disgraceful that they had to wait so long.

The boys' father says;

"Around the age of two, Cathal went into regression," he says. "He had been speaking, he had been saying 'Mammy', 'Daddy', 'Mammy, drink', then suddenly silence, he began to cover his ears as if he couldn't bear sounds," says Janice.

I'm not sure if this can be described as regression. It seems to be to me to be typical of the way autistic children develop, but correct me if I'm wrong.

They learnt the hard way that parents of children with autism have to wait for everything, including assessment, and the waiting list then was two years plus.

Now this is where I think money should be spent. The Irish health authority, rubbish as it is, needs to take responsibility and start supporting these families early, helping them get the paediatric assessments they need as early as possible, so the parents are not left wondering just what is going on, and will be able to adapt their lives to best support their children.

The elder boy, Cathal, was assessed at a centre opened by a voluntary organisation, Irish Autism Action.

The article continues;

"We were told that Cathal had mild autism. He could go to mainstream school, and needed six hours of special needs assistance at school, as well as occupational therapy and speech therapy. For me, it was like getting the prescription. It was a great relief, like: 'Thank God, I have the piece of paper; now we can do something, we can get on with it'," says Ken. "I was floored. It was pure misery and I found it very hard," says Janice.

I'm not sure what was "pure misery" to the mum, but I'll assume it was dealing with the educational authorities.

So their 6 year old attends a mainstream primary school and has a special needs assistant with him in the classroom for five hours a day. His parents have also converted their attic into a classroom where they work with him using flash cards and educational toys, and they pay for a private teacher teaches him "life skills" four hours a week.

At a reassessment of their son last December, he was diagnosed as having "high-functioning autism."

But meanwhile, the unthinkable had happened. A year after Cathal's assessment, their second son, Aaron, was diagnosed with autism, in a more severe form than Cathal's. Aaron has little or no verbal communication, he also needs speech and occupational therapy, but educationally, he will not benefit from mainstream education. Many children with autism do much better in an educational system called Applied Behaviour Analysis (ABA), and Aaron's diagnosis pointed in this direction. "I mourned Aaron. You mourn the child you will never have," said Ken, as Janice nodded in agreement.

Aaron sounds a lot like Duncan, my own autistic son. As for mourning, I can understand that when your child is autistic, most parents are sad at first, since the overwhelming image of autism in wider society is of a condition that is the closest thing to bereavement on this earth, a terrible burden, a dead soul in a live body, devastating, causes 80% of parents to divorce.
Oh my.
I think this is a good time to promote the essay by Jim Sinclair entitled, Don't Mourn for Us.

The Irish Independent article continues;

ABA, a behaviourist approach to children with autism, was pioneered at the University of California. ABA teaches behaviour modification, speech therapy, social skills training, using short intensive teaching periods, with lots of reinforcement and measurable goals. Such early intervention before the age of five and lasting two years seems to greatly help some children with autism both socially and intellectually.
(my emphasis)

All the above is true, but the key word is seems. ABA is just one way of teaching autistic children, but because something seems to help is not a good enough reason to insist on state funding for this particular method.

The article informs that the younger son, Aaron, qualifies for a home tutor for 20 hours per week.
"It is just a matter of luck that she has ABA experience, and because of this, Aaron is coming along well. She has Aaron dressing himself, cleaning his teeth -- she works one-to-one. The bad news is that we will lose her in June and we have no guarantee that her replacement will have the ABA experience. As far as we are concerned, this will make a huge difference to Aaron's progress and development," says Janice.

I don't understand why they are so concerned that the tutor has ABA training. More important, I'd have thought, is that the tutor has a good relationship with their son, is good at finding teaching moments and caters to their son's learning style, whether that be very structured or not, and that their son enjoys spending time with the tutor. I think they have also underestimated the abilities of their son in saying that the tutor 'had' him making all the progress.

They say they can well understand marriages coming a-cropper where there is an autistic child in the family. "It takes its toll on every single aspect of the relationship.

Here is the obligatory reference to autism's awesome powers of destruction.

Kevin Whelan, CEO of Solas, Ireland's first national diagnostic centre for autism, says

"It has been proven worldwide that early accurate diagnosis, coupled with early intensive intervention, increases the child's opportunity for positive development and success. Up until recently, families were waiting 18 months or more to receive a full diagnosis from the HSE, and longer for an assessment of educational and medical needs. This represents very valuable time lost, which can never be regained."

I'd like to see this myth quashed. There is no time window for intervention, after which the damage is irreversible. Autistic people, like anyone else, will continue to learn and develop throughout their lives.

For reasoned critique of the over-hyped claims of the ABA lobby, read the many articles by Michelle Dawson, a researcher in autism. She recently blogged about a UK paper in which the progress of 28 children receiving intensive home-based ABA intervention was compared against that of children attending an autism specific nursery. All the children were autistic and after over 2 years of the various interventions, there were no significant differences in outcome.

She also addresses the claims that there is good scientific evidence for the effectiveness of ABA, among other places, here.


Anonymous said...

Sorry, I know this is a minor point in your very well-written and interesting post- but when you say the parents had to pay the court costs does that mean that they had to pay the costs of the school's lawyers too?

Alyric said...

Hi Sharon

I think there's a very strong ABA presence in Ireland courtesy of Stephen Hayes et al and their research efforts - sort of migrated from the US. There are special school run in association with ABA researchers also I think. Seems to me that they get captive research subjects and the research subjects get educated. I'm pretty sure there's some hefty ethical questions in that mix, but hey, who would dare even ask? These are the 'white hats' and the kids are doomed anyway[\sarcasm].

That said, I can't see a problem about ABA being used for teeth cleaning and dressing and things of a motor memory nature. Phil Schwartz said something important about building up motor memory for things of that nature and seems to me that practice of the drill type exactly fits the bill. Of course the enthusiasts wax lyrically and falsely about the benefits of ABA for social skills, academic skills of more than the most basic type (and even there I think that could be easily disputed)as well as self injury. The evidence for the social skills and even the self injury is somewhat scanty. But, these days there's usually a stiff dose of floortime and non behavioral stuff anyway, which is all to the good and since therapists are human and not all that efficient they probably don't stick all that well to behaviorist principles. Throw in that most therapists will build up a relationship with the kids, which isn't in the handbook and it's not all bad by a long shot. I fondly recall one parent earnestly pointing to the peer playing integrated into her ABA program. She said that peer integration was the main part of the program and that this was called PRT. Obviously she has a somewhat tenuous relationship with the idea of a fact, but she was earnest and thought her offspring was thriving. Problems arise in the event that the offspring isn't thriving at all, which has happened, but all's fair in love, war and advocacy.

Sharon McDaid said...

Madam Ovary, (do you get complimented on your pseudonym often, it's great!) from what I understand of the case, the parents have to pay just their own legal costs.
So basically, the lawyers win :-(

Alyric, I can see that aba (not necessarily ABA TM) can be a useful tool for certain situations. I have/am trying to 'train' all my children in all those self care types of skills.

I didn't know that these Irish ABA schools are involved in research. And don't ask about ethics, don't you know it isn't the done thing in autism research...

Like you say, most ABA programmes these days are not pure ABA, but are eclectic themselves and are probably only labelled ABA for funding purposes. So why are the parents so opposed to a school which uses an eclectic mix of techniques, probably including some aba type things like PECs.

If they were campaigning for better schools in general, more staff and funding etc, I'd be right behind them. Not that they know or care what I think anyway!

Alyric said...

About why the parents would be opposed to 'eclectic'? Can hypothesise on a few reasons here:

1. Always trust the provider and especially if they are the funder as well to go for the cheapest option. Eclectic sounds really good in this context since any amount of low quality high volume stuff (e.g. poorly trained staff in ratio of 6 kids to 1 staff for most of the day)can fly under the radar with no quality control whatsoever.

2. Related to 1. - parents naturally view a one on one staff: student ratio as the best because they feel they can't possibly lose. They can if they looked at methods and outcomes, but from a simple perspective, this looks to be the ultimate.

3. ABA has been most successful in promoting the 'can't be learnt unless directly taught' scenario, which is utter nonsense and can be disproved for any person on the planet, autistic or not, in under five minutes.

I'd be leery of 'eclectic' services come to think of it and would devise my own set of 'eclectic' because at least I'd feel I had control of it.