Issue 6 Online Extra Autism The Clinical View: A Conversation with Jonathan Green: The ‘Other’ British Autism Academic

Jonathan Green
Jonathan Green

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Jonathan Green is Professor of Child and Adolescent Psychiatry at the University of Manchester. Jonathan co-led the UK’s first study into ICD Asperger Syndrome and recently published a paper [1], which followed up on data from the international “Autism Genome Project” [2] part-funded by the controversial organisation ‘Autism Speaks’. The New Idealist talk to Jonathan to find out more:

Can you tell us about the findings of your most recent research paper?

Yes, I wouldn’t say I’m….I mean I’m a co-author on that, but not the main author. So that’s a genetic paper and I’m not a geneticist so if you want to highlight that work I’m not the most authoritative person to talk about it. [after some discussion Jonathan then agrees to provide a synopsis of the paper he co-authored].

Basically, the search for the genetic basis of autism has been a really complicated thing which has been going on now for 15 years’ or more, and while we started off thinking that…there’s no question that autism is a highly heritable genetic disorder in some way…that’s where it started, that’s where we start from, exactly how is the question.

so probably there are now around 1,000 genes that have been potentially associated with autism.

We started off with the idea that there were a limited number of genes that were probably responsible, but as the work has gone on the number of potential genetic influences has spiralled and increased hugely, so probably there are now around 1,000 genes that have been potentially associated with autism.

So this is as you can imagine this is a very complicated story and this paper is a very nice and interesting one because it exemplifies the current way that geneticists have been trying to approach this complexity by essentially trying to group the genes associated with autism into certain groupings related to their function, particularly in relation to the brain.

And, because autism is a disorder involving the brain – it must do at some level, people are particularly interested in that. So what this paper does is just report on the result of a lot of pool data, that’s a really big sample of internationally pooled data on genetic studies to see if patterns in the affected genes can be discerned.

And what the paper reports is that there are patterns in relation to genes acting on certain areas of brain maturation and functioning in development. It’s a very elegant paper and essentially it shows that genes that have their impact on early brain development pre-natally – the first and second trimester of pregnancy.

Genes that act on that are implicated in autism, and genes that act on the functioning on the synapses, which is the main functional electrical junctions in the brain, and genes that work on certain signalling pathways in the cell are also implicated.

So there are those three main areas is what the… mapping has come up with and that’s what the paper reports really. It’s beginning to give us a bit more of a handle on how the genetic complexity of autism might be organised. It’s not answer yet, but it’s a step.

You may have read that Simon Baron-Cohen recently said that a prenatal test for autism ‘could possibly happen within five years’. What are your views on that?

I think it’s over-simplistic. I personally think it’s highly unlikely that there will be a simple pre-natal test for autism.

People always want you to come up with this kind of thing because partly it’s headline-grabbing but it also offers a… sort-of simple screening test etcetera.

People have always been promising this for years and years and years and Simon particularly is always doing this and I just don’t think it’s realistic.

The more we understand about the way autism develops in early prenatal life – and it is true that the prenatal period in brain development is going to prove to be a crucial area. The reason why such a thing I think is simplistic is because what we have come to understand is that there are multiple routes into autism, multiple ways in which this early…disturbance of brain development can cause the later problem.

And probably…and almost certainly also there are some later causes post-natally that could impact on the development of autism.

So given that there are all these multiple pathways, the idea that there is going to be one screening test is just over-simplistic.

And the idea that you can …you will be able to define, what we call a final common pathway…a signal that would combine all these different causes into one signal that says something’s going to happen, I just think is… over-simplistic.

I’m not saying there wouldn’t be benefits, [but] it would raise major ethical issues.There could be benefits, there could certainly be downsides.

People have always been promising this for years and years and years and Simon particularly is always doing this and I just don’t think it’s realistic.

That doesn’t mean we aren’t going to be able to understand more and more about…as we are doing, making huge strides in understanding some of the early origins of autism, but no, not a simple test.

The other thing about…is just to say that the other thing about a simple test is that it raises this whole spectre of prenatal testing and abortion etcetera, and I think that is again a complete red-herring in the way that we understand… the way this area of development has always been a contentious idea.

I’m not saying there wouldn’t be benefits, [but] it would raise major ethical issues.There could be benefits, there could certainly be downsides. What I’m saying is in practice I think it’s highly unlikely that such a simple thing as a prenatal test.

What people have in mind for that is something like what happens at the moment with tests for spina bifida and amniocentesis, that’s what the implication is, and I don’t think that such a thing is likely be found, it’s a much more complex problem than that.

What would the benefits be of a prenatal test?

That’s a good question. I mean, you know, as I say it would raise huge ethical issues. So with certain kinds of prenatal testing that one can do at the moment, for instance for Down Syndrome and for Spina Bifida, those are some two typical ones… prenatal testing can be done and certainly for both of those disorders and particularly Down Syndrome it also raises ethical issues.

So I suppose you could argue people on the whole, if it’s possible to know stuff people want to know it. I think that is generally the way culture and people go, and it’s understandable.

in theory it could allow you either to make a decision to have an abortion or…to at least prepare yourself for your child to have a disability.

What could be the benefits? Well, if there was such as thing that was specific, and I repeat again that I think this is over-simplistic to think there could be such a thing, but if there was in theory it could allow you either to make a decision to have an abortion or…to at least prepare yourself for your child to have a disability.

But one of the issues is that autism is so various that [it’s] not like Down Syndrome really. Down Syndrome you see is a very different kind of problem, it is a single clear genetic abnormality in one chromosome which causes predictable results. There are variations in a way, but the results are very predictable from this one single chromosome variation which is very well defined what it is.

Autism is completely different to that as I said, there are round about 1,000 genes associated with genetic variation and abnormality with autism at the moment. As you can see it’s a totally different situation to something like Down Syndrome which relates to one specific gene abnormality and chromosome abnormality.

testing gives you a chance to take action if you wanted to, or prepare yourself if you didn’t.

So, the arguments for it are like the arguments for any kind of prenatal or early screening, testing gives you a chance to take action if you wanted to, or prepare yourself if you didn’t.

That project (“Autism Genome Project”) was part-funded by [controversial US autism charity] Autism Speaks, who have funded several of your research projects. On the news archive on your site [3] relating to this project the notes state that ‘Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments and cure for autism’.

During the process of researching this issue, I have been made aware of the harm that this type of research goal can do to those in the autistic community who don’t feel that they need ‘curing’. Would you like to take this chance to address these concerns?

I think that is indeed an important aspect that is now quite widely accepted. So the voice of people within the community of people affected by autism who object to the notion of ‘cure’ is a respected voice. And I respect it and I think personally that the idea of finding a ‘cure’ for autism is kind of unrealistic in a scientific sense for reasons I mentioned in terms of the prenatal screening really.

the voice of people within the community of people affected by autism who object to the notion of ‘cure’ is a respected voice.

And I accept also that it’s questionable whether it is, in that stark sense, really the right kind of goal and that’s certainly not the goal of…I mean, my main work is in terms of interventions for autism in other words, treatments that we can apply, interventions that we can make for affected individuals and families.

I’m very involved in this and so I do respect that voice, I mean on the other hand it shouldn’t be underestimated how much distress and suffering the…being affected by autism can cause and does cause for many, many children and individuals.

And people say ‘well partly that suffering is caused by the fact that society isn’t properly adapted to people with autism’ and that’s true as well, so there’s a lot of adaptation that can be done to help these people’s lives, and should be done.

Even given that, intrinsically, there is a lot of suffering and distress that can – doesn’t always – but can be a consequence, and that needs relieving in its own right.

So it’s, again over-simplistic to say ‘it’s fine to be autistic and nothing needs to be done about it, it’s another way of living, another way of being’

So it’s, again over-simplistic to say ‘it’s fine to be autistic and nothing needs to be done about it, it’s another way of living, another way of being’, and in a ways that’s true, but in another way, it’s a way of being that causes considerable distress and that’s why people try and help it.

The feedback I have is that people know that work needs to be done – as you said there – in terms of helping people understand autistic people and helping autistic people to better understand non-autistic people. I think the goal is probably to try and meet in the middle.

I think you’re right that the word ‘cure’ is certainly kind of provocative and some people, especially in America – this is particularly true in the States, do hold very strongly to this idea and it is controversial – I don’t, I take the view that it’s probably an unhelpful concept really. The more we understand about the nature of this amazing condition and problem, so yeah I’m basically agreeing, but it doesn’t mean that you can’t do useful things.

Another side to your research is to do with helping parents to better understand the ways in which autistic children communicate. Can you tell us about your work in this area?

This work that we’ve been doing for quite a long time now is based on very detailed work that we and others have done into the early development of communication in autism, particularly between parents and children.

And, we worked in two particular points firstly is infancy, so autism as you probably know, emerges –  it becomes clear around three usually, that sort of age.

this period of two-three years’ before the emergence of obvious autism has been a mysterious period

Which means that this period of two-three years’ before the emergence of obvious autism has been a mysterious period. It’s been a period where we know something’s going on because we take the view that autism is a developmental disorder, it has its origin in the vast majority of cases in very early development.

So something’s going on in infancy and of course that raises the possibility that if you can understand what’s going on in those very early stages you might be able to head it off, or prevent, or at least reduce the impact later on.

So this is the idea of very early preventative intervention, or…It’s called preventative but it’s reducing the severity.

And so we’ve been doing that in infancy, so we work with parents of babies at risk of autism. They’re at risk because they are the siblings of autism who already have autism, and we know they’re at risk because of that, so we work with parents of babies at risk of autism to try and help them maximise the social experience and learning of those infants.

So, to get them to focus on the communication of the infant and maximise their social interaction and learning and this is really working with parents to help parents provide the maximum social learning opportunity for their baby.

It does not imply that there is anything wrong with the parents that needs fixing, we use the parents and the therapists to help us, and the reason we do that with the parents, is that if we can help the parents do that then of course that’s going to impact on the kid, the baby 24-7.

Can you give a case study of where this therapy or support, took a child from a to b.

What we’ve been doing is systematic research on this babies and older children with autism and we’ve published on this so you can have a look at the site (available here).

That’s the older children who’ve already been diagnosed but it’s the same principle, and what we’ve shown in those studies is that by working with the parents in this way, it’s very clear results.

we’ve shown that as a consequence of helping parents like that the children show better communication with the parents.

One is that the parents are really responsive to this kind of support/training…in the sense that they are able to change their responsive behaviour with the infants of the children and we can really help the parents get good at this.

The second thing is that when we are able to help parents like that, we’ve shown that as a consequence of helping parents like that the children show better communication with the parents.

If you watch the video tape of a parent of a child with autism before intervention, you would often see… the child with autism will be avoidant of social contact, they’ll be turning their face away, they’ll be trying to do other things, they’ll be trying to fiddle with something about social contact, some kind of computer game, some kind of toy or something like that.

…so parents are really able to see ‘my goodness, my child was giving me a half-communication there but I didn’t see at the time and respond to because of that’.

After this kind of intervention, what you see is the child is much more motivated to engage in the social contact, to initiate the social contact and enjoy the social contact and produce more language with the parents.

In simple terms, what we do is we make a videotape of parent interacting with child in a standard way. Naturalist play… with toys. We take the videotape, we then work with the parent, playing back the videotape watching the videotape with the parent and helping the parent explore how they could respond more effectively to the child’s educational signals.

…so parents are really able to see ‘my goodness, my child was giving me a half-communication there but I didn’t see at the time and respond to because of that’.

It’s about picking up the cues which in autism are odd, they are not normal. They are sometimes a-typical, they’re unusual or they’re very vague or they’re not clear. What this means in practice is that parents normal intuitive parenting skills that all parents have to pick up cues from their babies don’t work very well, because the cues are so unusual in autism.

So what we’re helping them do is to understand those unusual cues, so that their natural parenting skills can come into play.

(The New Idealist then asks Jonathan if he had thought of uploading a clip of the social interaction learning to his website to show this type of coaching in action and help show other parents how to pick up cues. A discussion is then had about the benefits of this type of research and after the interview Jonathan emailed to say the clip would be online ‘next week’. It is now five weeks later and it’s not online yet; we will update this page if that changes).

…I think it’s fair to say, that this kind of approach which we’ve worked on for a long time and we have shown it’s good science, it works well…generally speaking is more acceptable to the autism community I think, because as you’ve already indicated, it works with the grain. It’s not saying ‘we want to obliterate autism’, it’s saying we want to mediate the downsides of it and we want to maximise the potential of kids with autism.

Do you think that autistic people would benefit more from this type of social interaction research than genetic research into the causes of autism?

Well, I don’t think it’s an either or.

The NICE guidance that comes out for medical treatments across the UK…the UK has the NICE committee that reviews the evidence of interventions for different disorders…and we’ve just completed a NICE guidance which has been published last year for autism.

And this kind of social communication intervention is the thing that NICE now recommends for the intervention early on in autism. So it’s an accepted sort of thing, people realise that it’s a positive thing.

The genetic research is very different really, it’s basic science. It’s like trying to work out the basic causes, it doesn’t have any treatment implications at the moment at all, and it probably won’t for ages and ages.

The genetic research is very different really, it’s basic science. It’s like trying to work out the basic causes, it doesn’t have any treatment implications at the moment at all, and it probably won’t for ages and ages.

The sort of thing we’re doing is based on the current developmental science and it has a practical implication.

When you said that the key issue with genetic research is that it doesn’t have any direct treatment benefit and it won’t do for a while, whereas this type of social interaction research can have practical uses almost immediately…

Well, not almost immediately, immediately. It is now, it’s in use in the NHS.

I’ve just got back from a trip where we trained up a whole load of people in Canada to do this. We’re doing a project at the moment in India and Pakistan where we’ve trained up families or healthcare workers out there to do this with parents…of children with autism.

It is being used around the world, now so I think it’s a useful approach.

Find out more about Jonathan’s research at www.manchester.ac.uk/research/Jonathan.green

References:

 [1] Pinto, et al (2014). Convergence of Genes and Cellular Pathways Dysregulated in Autism Spectrum Disorders. Am J Hum Genet.

[2] www.autismspeaks.org/science/autism-genome-project

[3] http://www.population-health.manchester.ac.uk/epidemiology/CIGMR/aboutus/newsarchive/scanresults/

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