Episode 86      27 min 15 sec
Scrutinizing Intervention Programs for Autism

Prof Margot Prior reviews available intervention programs for autism. With host Eric van Bemmel.

"The question you ask somebody who's trying to sell you a treatment is show me the evidence. That evidence has to go beyond testimonials." - Prof Margot Prior




           



Prof Margot Prior AO
Prof Margot Prior AO

Professor Margot Prior is a leading researcher in the field of autism in Australia. She has been a researcher, clinician and teacher/trainer in this area for more than 30 years and was honoured for her work in autism with an Order of Australia. She has a large range of publications covering cognitive, social, emotional, physiological, and applied domains of Autism Spectrum Disorders, and has also published chapters in books, several reviews and a book on Asperger Syndrome.

Her work is well known internationally and she has been a frequently invited speaker at international meetings. In recent years, working with Dr J Roberts she has completed a review of early intervention treatments for autism and produced the Guidelines for Early Intervention in Autism which are now being used across Australia. This work was commissioned by the Department of Health of the Australian Government. In 2008 she was a member of the Autism spectrum disorders expert Advisory Committee to advise the government on setting up early intervention programs in every state.

Margot is currently engaged in a longitudinal project focused on language and literacy development from 8 months to 7 years in a population sample. She has also worked extensively in child mental health and was Professor/Director of Psychology at the Royal Children’s Hospital Melbourne for 8 years.

Credits

Host: Eric van Bemmel
Producers: Kelvin Param, Eric van Bemmel
Series Creators: Eric van Bemmel and Kelvin Param
Audio Engineer: Ben Loveridge
Voiceover: Nerissa Hannink

View Tags  click a tag to find other episodes associated with it.

Download file Download mp3 (26.2 MB)

Scrutinizing Intervention Programs for Autism

VOICEOVER
Welcome to Up Close, the research, opinion and analysis podcast from the University of Melbourne, Australia.

ERIC VAN BEMMEL
Hello, and welcome to Up Close, recorded at the University of Melbourne Australia.  I'm Eric Van Bemmel.  
Regular listeners of this podcast may remember an earlier episode that we did, episode 18 in fact, entitled Autism Spectrum Disorder: An Updated Look.  We spoke at the time to Professor Margot Prior about this developmental disability and its impact on affected individuals and their families.
In today's episode of Up Close we're going to dig a bit further, particularly into intervention programs, those that might offer help and those that despite how they're advertised offer no benefits whatsoever.  
We're pleased to have Margot Prior join us again today.  Professor Prior, from the School Behavioural Science at the University of Melbourne, is the recognised expert on autism and related disorders.  She's authored, or edited, seven books and some 200 articles and chapters on child development.  Together with colleagues she's recently completed a review of early intervention programs for autism.  
Professor Prior, welcome back to Up Close.  

MARGOT PRIOR
Good morning Eric.

ERIC VAN BEMMEL
Now, last time we spoke to you, which was in mid-2007 and we're now speaking at the end of 2009, we covered a number of topics more generally about autism, a description of the condition, examples of typical behaviours, purported causes, a bit about prevalence and examples of some high functioning types of people and also the burden that autism places on families of autistic children.
Today we're going to look at, in more detail, matters of prevalence, the importance of early diagnosis and the effectiveness of intervention programs.  But before we do that, I'm wondering in that two and a half years since we last saw you what new understanding has come about, about autism and its origins.

MARGOT PRIOR
Well, probably the most outstanding findings over the last couple of years have been we're convinced that the prevalence of autism has increased and there's a variety of reasons for that, but there are many more children out there who warrant this diagnosis than we thought.  
Another area of development has been in genetics.  We're now convinced, I think, or we were then but we're even more convinced now, that it's a biologically-based disorder and that it does have quite strong heritability.
In addition to that, probably the early diagnosis and intervention, which you just mentioned, that's progressed quite a lot.

ERIC VAN BEMMEL
Right, okay, we'll cover that in some depth in this session.  You mentioned prevalence and there seems to be a rise in reported cases of autism.  What's that about?

MARGOT PRIOR
Well, there are now so many studies of prevalence which show increases right across the world that we can't deny that any more.  But the question is, is it that there's something out there which is producing more cases or is it to do with the way you diagnose, or some other factors?  The general consensus is probably that there are not more cases appearing but that we're now much more aware of autism as a disorder so not just families but professionals, schools, the general public, GPs, family doctors, are more likely to take parents seriously when they come along and say, look, there's something wrong with my child.  They're more likely to refer for assessment.  
So there are those kinds of reasons, but there are also changing diagnostic practices, so if you like the gates have widened for children to go through to get a diagnosis.  That's in part due to the fact that we're seeing more high functioning children, which we mightn't have considered to be autistic years ago.  We're also seeing more young children, so diagnosis is happening at two or three, whereas in years gone by it was five or six or seven.  So that's I think made a difference to your chances of getting a diagnosis.

ERIC VAN BEMMEL
What sort of numbers in the population are we speaking about?

MARGOT PRIOR
The general figure at the moment is about one in 150 children.  In our research here in Victoria, in Australia, we're getting about one in 100, and that's also coming up overseas.  So it seems to be increasing all the time.  In fact, it's more prevalent than childhood cancer, child diabetes and childhood AIDS put together.  So it's really a significant issue.

ERIC VAN BEMMEL
You mentioned of course the importance of early diagnosis and that we're seeing diagnoses now at two and three years rather than say five and six years of age in the past.  How do you actually go about screening for autism?  How does a professional person do that?

MARGOT PRIOR
Well, in our particular local scene there's been some attention given to screening children through maternal and child health centres.  So these are nurses who see infants up to about the age of two, and many of them have now been trained to look for and to report early signs.  Of course, parents are becoming more knowledgeable too, although generally they might just have a sense of unease that all is not well, my child's not quite like other children, not like his older brother, and so they might feel suspicious that something's not right and seek referral.
But the kinds of early signs which we now can be confident are present in a child at risk for autism include lack of eye contact, lack of responding to name, not sharing attention, so not pointing or showing the way little children do with their parents when they’ve got something interesting, not showing imitation skills, which of course children learn such a lot that way, but autistic children generally don’t imitate.  Lack of pretend play.  What we call social smiling.  So not showing any expressiveness when people are around and, of course, a key thing is the use and the understanding of language.  So language is almost inevitably delayed.  You can see that the child doesn't really comprehend what's going on.  
Then there's a number of challenging behaviours, like what we call stereotype of behaviours.  So head banging, rocking, pulling at hair, things that the child does over and over again, sometimes that translates into being only interested in one kind of toy.  For example, lining up cars or…

ERIC VAN BEMMEL
Stacking up cans.

MARGOT PRIOR
Yes, arranging things in a certain way and being very obsessive about that.

ERIC VAN BEMMEL
These sorts of signs come about in very young individuals as well.  

MARGOT PRIOR
Yes, even in the first year of half you can see these signs.  Now, not every child will have every sign but there's the range of things which really sound alarm bells for you.  

ERIC VAN BEMMEL
I imagine that certain other conditions might have the same sort of signs and so there might be a mixture of things going on in the individual, perhaps autism and something else.  In other words a mixed diagnosis might be appropriate or…

MARGOT PRIOR
You're quite right in that point, because some children with developmental delay have some of those behaviours.  Some children will end up having a communication disorder or what we call specific language impairment, they may have those signs.  In fact, there's a range of disorders.
So I'm not saying that this is the list and they just apply to autism.  You know, you're quite right, they can be associated with other kinds of developmental abnormalities.  But it's that cluster and the severity and persistence of that which alerts us.  As we follow children through we see whether it turns into autism or one of those other disorders or, indeed, dissipates, goes away, because sometimes it does.  

ERIC VAN BEMMEL
This is Up Close coming to you from the University of Melbourne, Australia.  I’m Eric van Bemmel and in this episode we're scrutinising early intervention programs for children with autism.  Our expert guest is Professor Margot Prior of the School of Behavioural Science.
Moving now from early diagnosis, the importance of that, to intervention, Margot, you and your colleagues have recently carried out a review of various intervention programs and how effective they are or otherwise.  But why is it important, first of all, to intervene early?

MARGOT PRIOR
Well, I think given that we believe this is a biologically brain-based disorder and given that we now know a great deal about early brain development, about the plasticity of the brain, how sensitive those early months and years are, we're now more than ever convinced that we must get in early while we've got a chance to alter that plasticity of the brain and to bring in the kinds of experiences which the young brain needs in order to develop normally.  
So now we put huge emphasis on early diagnosis and trying to get intervention happening straight away. If this doesn't happen early and the kinds of behaviours characteristic of autism become entrenched it's much harder to shift them and to help the child to move towards a more normal kind of behaviour.

ERIC VAN BEMMEL
In your research you looked at a number of programs of intervention.  There seems to be ones that are more effective than others and some that might best be avoided by parents.  Can we look at what sort of seems to work best for some individuals and Applied Behavioural Analysis, or ABA, what is it and why is it effective?

MARGOT PRIOR
Well, you're quite right in that we now can categorise treatments on the basis of how much evidence there is for them.  Now, there's not a lot of research in this field because as you'll appreciate it's quite hard to do this kind of research.  But we now can say that there are some evidence-based treatments, there are some with some what we call emerging evidence.  There are some which are just ineffective and there are some which are doubtful, possibly harmful.  So it's very important to have that scrutiny of what's out there.  
Now, you mentioned ABA, and ABA has got the best evidence.  Although we can't say with confidence ABA is better than any other treatment, we can say that this is the kind of treatment which involves a systematic learning-based intensive training.  It does at the moment present the best evidence for making a difference.  

ERIC VAN BEMMEL
What does the child experience in that training?

MARGOT PRIOR
Well, in ABA there's a very systematic program based on an assessment of the child, where the child is at, what their needs are, what their strengths are and their weaknesses.  That's followed by a program of graded micro-teaching.  
So it begins with really elementary skills, so just getting the child to sit down and pay attention, to listen, to look, to follow instructions.  You know, very, very basic kind of training which you need before you can actually teach the child skills.  
Then moving on through learning particular skills, practising them, important things like self-help skills: feeding yourself, using the toilet.  A lot of work on sounds, gestures, language, communication skills.  That's generally given in an intensive way every day over quite a lengthy period of time.  

ERIC VAN BEMMEL
This is done one to one, is that correct?

MARGOT PRIOR
This is usually done one to one.  You can see it happening on a group basis or it can be done with a child within a group milieu.  It can be done in clinics, in early intervention centres and it can done at home.  Probably the most common is with a trained therapist and in the home, because when it's so intensive, of course, that's really necessary.  
I'd like to say that there's nothing new or magical here about ABA treatment.  It's just highly systematic training of skills that haven't developed naturally in these children as they do in normal children with relative ease.

ERIC VAN BEMMEL
But there's a caveat there, isn't there?  I understand that it works for some autistic children and not at all for others.

MARGOT PRIOR
Yes, that's true.  It's nothing like a cure.  It used to be promoted as a cure but it's not a cure.  There are what we call enormous individual differences, so some children will do very well, will learn a great deal and really make progress.  Others might make small amount of progress, learn some skills, but really not move very far out of their autism.  For some children it doesn't work at all.  
So although it's got the best evidence for making a difference that doesn't mean to say that this is what everybody should do for every child.  We're well away from having any kind of recipe like that.

ERIC VAN BEMMEL
So for the individual autistic child who's in an ABA program, what are the best predictors of improvement?

MARGOT PRIOR
Well, the best predictors of improvement in autism have always been how intelligent the child is and how good their communication skills.  So for example, a child who makes no progress in problem solving, gaming skills and communicating is a child with a not very good outcome.  Children with better intelligence and some communication skills, they're the ones who are likely to do best.  
Another recently emerging predictor of better progress is the ability to play, so play's extremely important of course for all children, and these are children who don't really play.  But children who come into a program with at least some play skills and the capacity to get engaged with you in play, that's a good sign of a better outcome.  

ERIC VAN BEMMEL
Moving on to these intervention programs that have some emerging evidence, you've listed quite a few in your review here.  Developmental interventions, therapy-based interventions, communication-based interventions, family-based and so on.  What are the differences between these, or are there any?

MARGOT PRIOR
The latter question is a good one because we've made big advances in treatment, in devising programs, and you will see elements of treatments put together in a sort of eclectic way.  
So for example, we talk about ABA as if it's kind of some pure program but in fact elements of ABA are seen in almost every other program.  I mean, it makes sense, it's about learning.  But for example, in developmental models their basis is on developing engagements and relationships with the child.  A lot of emphasis on play skills, interacting with other people and building communication and speech and language.  
There are some particular programs, one which is called PECS, and I'll just tell you a little bit about that.

ERIC VAN BEMMEL
It's P-E-C-S?

MARGOT PRIOR
P-E-C-S.  That also comes in with communication programs.  This is a training program based on ABA principles where children learn to recognise objects, to point to objects.  Parents or therapists can make photographs of objects and put them around the house and then that's a way of communicating.  So if the child wants a drink of milk, for example, they can point to the photograph of the drink of milk.  So it's like an alternative communication system.  
The hope there is that they will progress from that kind of visual-based strategy to communicate towards some language.  That's important in the developmental model and the communication model.  
I mean, another important principle I think in the developmental model is that it's based on a program built on where the child is at, so teaching the child to walk before he can run.  So it's paying attention to where a child has got to, whether it's very low functioning or higher function, and then moving on in a systematic way from that.  
Now, communication-based therapies are very much based on using visual strategies, because one of the things about children with autism is they seem to be more comfortable, more skilled, more able to work through their eyes, compared with their ears.  
So communication-based strategies are often visual so they can be using photographs, like I just mentioned, or manual signing.  Another way that this is done is through what we call social stories.  So building stories with visual illustrations that, for example, model a social interaction that the child may be having difficulty with.  Pointing, bringing things, all of those kinds of things can be taught visually.  So that's a strength of the communication-based programs.  
There's another category of programs, very much family-based, and they're based on a blending of behavioural and naturalistic approaches, through everyday activities that happen in the child's environment.  

ERIC VAN BEMMEL
Family-based because the training, if you like, happens in the home with the family rather than with a professional?

MARGOT PRIOR
Yes, that's true.  I'll give you an example of a family-based program.  It's called the Hanen Program, and in this program parents are trained to use particular strategies of communication with their child, how to communicate effectively and how to get the child to communicate effectively in a systematic way.  

ERIC VAN BEMMEL
How do we spell Hanen, sorry?

MARGOT PRIOR
It's spelled H-A-N-E-N and the program is called More Than Words.  

ERIC VAN BEMMEL
More Than Words?

MARGOT PRIOR
Yes.  So it's not the only program like this.  This is just an example that I've given you.  So it's family-based because the training comes through the parents.  It empowers the parents to work with their children.  

ERIC VAN BEMMEL
You're listening to Up Close, coming to you from the University of Melbourne, Australia.  I’m Eric van Bemmel and I'm speaking with Professor Margot Prior of the School of Behavioural Science.  Our topic today is scrutinising early intervention programs for children with autism.  
Now Margot, you've outlined some of the more effective or more promising intervention programs.  But there are some out there I understand that are not so effective.  In fact, may even be dangerous to some extent.  Can you talk a bit about that?  I'm thinking here of things like psychodynamic approaches to autism.  

MARGOT PRIOR
Yes, there are a number of programs which have been around for many, many years which don’t have evidence for their effectiveness.  A popular one is one which is called sensory integration, or sensory motor integration.  That has a basis in occupational therapy and it's quite widely used, and it makes sense in that sensory processing and regulating your emotions and your activities is very challenging for children with autism.  
So this kind of therapy provides various kinds of sensory stimulation: touch, taste, feel, smell, and activities such as swinging and balancing and all of that sort of thing.  All nice things to do but no evidence that they make a difference.  
I mean, it's probably fun for the children.  They quite enjoy it.  But if you're looking for something which will make the child move on and be less autistic there's no evidence that that happens.  So that's just one example but, you know, there are dozens of others.  

ERIC VAN BEMMEL
And many of them are carried out by professionals…

MARGOT PRIOR
Absolutely.

ERIC VAN BEMMEL
…claiming efficacy…

MARGOT PRIOR
Yes.

ERIC VAN BEMMEL
…but in fact there is no evidence.  

MARGOT PRIOR
Yes, and many of them purported to be based on newer physiological developmental issues, so they sound scientific and clinical and they're quite persuasive but in fact there isn't a basis that you can demonstrate that any alterations to the brain are going to come about.

ERIC VAN BEMMEL
Then there's another class of programs out there that perhaps have the whiff of snake oil, I understand.

MARGOT PRIOR
Yes, there's plenty of snake oil in this field, as there is in a lot of child psychopathology.  Especially if you've got a child with a rather mysterious disorder and there's no cure, you're going to be on the lookout for all sorts of suggestions that might help.  
So parents are really vulnerable to people who come and promote, advertise and charge a great deal and promise a cure.  So parents should always be very wary of the promise to cure.  There is no cure.  

ERIC VAN BEMMEL
Is it worth giving some names or examples of these ones to avoid?

MARGOT PRIOR
Well yes, they fall into various classes.  Some of them are biologically-based. Things like diets, glutamine casein free diets, vitamins.  Some of those - not the ones I just mentioned but some of those are really potentially harmful.  So there's one which is called chelation, which is harmful and not to be used.  
Other things like large doses of vitamin A, withholding immunisation, which has been very controversial over the last five or 10 years, but it's harmful.  So parents do need to be very careful and to ask questions about these treatments.   
I mean, the question you ask somebody who's trying to sell you a treatment is show me the evidence.  That evidence has to go beyond testimonials, beyond somebody saying, look, I know so and so whose child improved hugely with that treatment.  That is not evidence.

ERIC VAN BEMMEL
No.

MARGOT PRIOR
No.  So it's quite hard for parents I think to have to do this kind of work.  But if they want the best deal for their child, and of course they do, they should go for treatments which do have an evidence base.  

ERIC VAN BEMMEL
Margot, it seems that some people will inevitably bring up the notion of pharmaceutical solutions to autism.  Are there any?

MARGOT PRIOR
No, there are no solutions to autism via medication, and there's been a huge amount of research on that, so I can say that with confidence.  However that said, there are a few medications which might help some children with some particular behaviours.  
So for example, things like sleeping problems, aggression and violence, hyperactivity, severe anxiety, all of those things occur with autism in some children.  And so people have been trying particular medications for those targeted behaviours, and sometimes they work.  
Now, it's not really good to recommend medication, certainly not as a first port of call, but - because most medications were developed for adults, we don’t know about their effects on children and all of them have some side effects.  
So caution needed with medication, but sometimes it can be used for particular symptoms when nothing else will work.  

ERIC VAN BEMMEL
So Margot, finally, there's a lot of complexity in this area.  Certainly, looking at your research, lots of different programs that offer evidence, emerging and otherwise, but I'd ask you to just address parents particularly; is there hope for them in this area?

MARGOT PRIOR
For parents, there is hope, yes.  We are much more hopeful these days than we used to be.  We have made progress.  We're much more hopeful and we've got much more expertise than we used to have.  
So parents should have no hesitation in going to ask for advice, maybe starting with their GP or with a paediatrician, or the maternal and child health nurse to ask about their particular child.  So if they think something's wrong, always ask about it.  
Secondly, get an expert diagnosis, no matter what it is, whether it's autism or developmental delay or some other disorder, and then take professional advice about treatment.  
So these days at least in Australia we're really trying very hard to provide autism advisers.  So these are people to whom you can go, find out about what's out there, ask questions like what's the evidence, where are the resources and the services and get some professional help and advice to find the right place for your child.

ERIC VAN BEMMEL
Well, Professor Margot Prior of the School of Behavioural Science here at the University of Melbourne, thanks very much for joining us today and giving us an overview of the autism early intervention landscape.

MARGOT PRIOR
You're welcome.

ERIC VAN BEMMEL
For interested listeners, Professor Prior can also be heard speaking about autism on episode 18 of this podcast.  That episode and all others can be found on our website.  

Up Close is brought to you by Marketing and Communications of the University of Melbourne, Australia.  Relevant links, a full transcript and more information on this episode can be found on our website at upclose.unimelb.edu.au.  We also invite you to leave your comments or feedback on this or any episode of Up Close.  Simply click on the add new comment link at the bottom of the episode page.
This program was produced by Kelvin Param and myself, Eric van Bemmel.  Audio engineering by Ben Loveridge, Up Close is created by Eric van Bemmel and Kelvin Param.  Until next time, thanks for joining us and goodbye.

VOICEOVER
You've been listening to Up Close. For more information, visit upclose.unimelb.edu.au. Copyright 2010. The University of Melbourne.


show transcript | print transcript | download pdf