In today’s Guardian newspaper, Chloe
Lambert asks “It is right to try to ‘normalise’ autism?” in an article prompted
by the upcoming BBC4 documentary film “Challenging Behaviour” (awful title, I
hope the film is better). The article can be found at:
So, we have an article with that
interesting question but the story is all about the use of ABA as an
educational approach for working with children with autism. The question is
important, and it is an ethical one. To use this question as a title for a piece
about ABA-based autism education is unhelpful mostly because I argue that ABA
is nothing to do with ‘normalising’ autism just as ABA isn’t an intervention
for autism of course.
I’ve written extensively, and in the public
domain on this blog, to help people get a better understanding of the use of
ABA methods as an educational approach for children with autism. To be fair,
the Guardian article does (I think) a pretty good job of giving a picture of
how ABA is used flexibly to work on a number of key areas for children, is individualized,
reward-focused, and has pretty good outcomes. The aspect that makes my heart
sink is to see quotes from autism experts that, again in my view, just aren’t
accurate.
Please take a look at my description of ABA
and its use with children with autism. This does relate well to the Guardian
article, but is in a little more depth:
It is a real shame to see the ‘normalising’
issue coming up yet again, especially in the quote from Liz Pellicano (who I
think is fantastic, btw) suggesting that the “underlying ideology of ABA” is “to
make them indistinguishable from their peers". This is a criticism of ABA
about which I have a very clear view. Here’s a full quote from my earlier blog
on criticisms of ABA (see the full blog at http://profhastings.blogspot.co.uk/2013/03/autism-and-evidence-5-15-criticisms-of.html
):
“The
criticisms here focus on a number of related points. The first is that ABA
approaches are focused on taking away something of the child’s autism – trying to
make the child “normal” in some way. Critics argue that this also leads to
proponents of ABA approaches trying to convince parents and others that they
can “cure” a child of autism, or more generally that “ABA can lead to recovery”
from autism. A second area of criticism is that ABA focuses on
reducing/removing behaviours that cause no harm for the child and in fact are
functional for them (especially stimulatory behaviours – “stims”).
Some
discussion of this issue can be found in two of my previous blogs, so please
take a look at those first:
In
summary, ABA approaches in autism do not “decide” which behaviours to focus on
in terms of developing new skills or reducing existing problematic behaviours.
Multiple perspectives are used to identify targets for intervention including
the child, their family, teachers etc. Ethically speaking, behaviours ought to
be the target for reduction only when suitable alternatives are available for
children (and these may have to be taught), and when the behaviour in question
is clearly interfering with an aspect of the child or family’s experience of
quality of life. Sometimes, “stims” may be targeted for reduction for these
reasons, but there is no prescription to do so as a part of an ABA programme.
When
it comes to a broader normalizing agenda, this is an issue that is not specific
to ABA. In fact, educationally focused interventions in general ought to be about
making a positive difference and not succumbing to a medical model agenda of
cure or recovery.
That
said, unfortunately, it is true that some proponents of ABA sell their services
on the basis that recovery “is possible”. Thus, many people may have heard
these qualified promises, or perhaps stronger promises made. However,
proponents of many other interventions in autism also make similar (sometimes
much stronger) claims. The fact is that many interventions exist within a
marketplace where they are trying to attract attention of parents as
“consumers”. Until autism organizations and government bodies recommend (and
fund) only interventions with a clearly demonstrated evidence base, this
marketplace will continue to function.
An
important point to make is that just because some individuals or organizations
argue that ABA can lead to some sort of recovery from autism does not mean that
this is what ABA is all about.”
It is also important to point out that the
same autism experts who criticize the potential ‘normalising’ focus for ABA
suggest that autism symptoms ought to be the outcomes measured in autism
intervention research. This is a rather odd positioning, and not one that is
core to the ideology of ABA at all. The whole field is tainted by a medical
model of autism (see http://profhastings.blogspot.co.uk/2013/04/autism-and-evidence-6.html
).
A further autism expert view from the
Guardian article is the following: “Dr Luke Beardon, senior lecturer in autism
as(t) Sheffield Hallam University, argues that ABA's focus on behaviour and
rewards means that children may not learn how to make decisions for themselves”.
I’m not sure how children are meant to
learn how to make decisions if it is not taught to them, and they learn the outcomes
of making decisions. Again, this robotic learning undertone (also mentioned
elsewhere in the article) is spouted by people who just don’t know what they
are talking about! Again, my blog opening discussing criticisms of ABA has lots
of “answers” on this issue and related ones - http://profhastings.blogspot.co.uk/2013/03/autism-and-evidence-5-15-criticisms-of.html
In concluding the article, a question is
asked why ABA isn’t used more in UK schools. One answer, once you understand
what ABA is, is that ABA is used everywhere and underpins much of modern
evidence-based education. So, it is a strange question. Specifically in
relation to autism though, the conclusion is: “Much of the evidence suggests
that autistic children do best with a combination of approaches.” I’m afraid
this is total rubbish, and it is hard to be patient at all with such a
statement. I do not know of Randomised Controlled Trials comparing an approach to
autism education that is eclectic in its use of approaches, versus a clear
model like a behavioural education model, against typical education for
children with autism. Educational delivery models are rarely tested in autism
at all, so the evidence to support such a conclusion is missing. Interestingly,
there are UK data (not from a RCT – please do note) showing better outcomes
from a behavioural education model compared to eclectic education as usual for
children with autism (see http://profhastings.blogspot.co.uk/2013_06_01_archive.html
)
So, Chloe Lambert at the Guardian, a good
attempt to provide an interesting and balanced perspective on ABA and autism.
When will someone truly update for the public what ABA is and how it might be
used to improve education for all children, including children with autism? I
know it can be hard to find the “moderates” who are supportive of ABA, but we
are out there…
