Autism: Difference or Disorder?
TRANSCRIPT OF THE KEYNOTE SEMINAR OF THE ALL-PARTY GROUP ON SCIENTIFIC RESEARCH IN LEARNING AND EDUCATION
Committee Room 1, House of Lords 9/12/2010
The Group heard from Professor Baron-Cohen, Professor of Developmental Psychopathology at the University of Cambridge, Fellow at Trinity College and Director of the Autism Research Centre; and Professor Patricia Howlin, Professor of Clinical Child Psychology at the Institute of Psychiatry, London. The meeting was chaired by Baroness Warnock and Baroness Greenfield.
House of Lords (Committee Room 1) 12 December 2010 2.00-4.00pm
1. Welcome and Introduction by Baroness Warnock
Well I do start by welcoming you all here and thank you very much for coming. I do feel particularly ashamed because you were all early and have been here from heaven knows when. Anyway you fully understand the difficulties for access to the House this afternoon and I am very grateful to you for having forced your way in. And we won’t waste any more time. I would like first of all to introduce Prof Pat Howlin, from the Institute of Psychiatry, here in London, who is our first speaker on the great topic with have before us “Autism: Disorder or Difference”.
2. ‘Semantics or Pragmatics’ – Professor Pat Howlin APG London, 2010
Thank you all for coming and fighting your way through the crowds. I am going to argue on the disorder side of the debate and I hope you (Baron-Cohen) are going to argue for the difference side of the debate; I have entitled the talk ‘Semantics or Pragmatics’ because it could just be a nice debate about words, but my argument is actually that there is quite a difference in terms of how Autism is seen.
I wanted to make a few points before I really get into it. The first is that clearly there is an overlap, there are no clear distinguishing marks between somebody with autism and somebody who’s within the normal, typically developing distribution, because at the ends there is always a fuzzy edge. Whatever measure one tends to use, from almost any medical or psychiatric condition, you’ll find this sort of picture, such that most people who are classified as normal and typically developing will be on one side, and most people with the disorder will be to the other side of the cut-off point. And in the middle there are people that don't quite fit and I think that - and not wanting to be sexist here - but if you take the case of males who are absolutely besotted with football, who eat, sleep and drink football and have no social life outside of football, it's sometimes difficult to see how they differ markedly from someone with autism who also has very special interests in very specific topics. So there aren't any real dividing lines when it comes to the fuzzy edges.
But, of course, one has to agree that autism is a condition that's different; though not necessarily negatively different. Take Hans
Asperger, for example, when he described Asperger's syndrome: he considered that for real success in science and art - if you're going to really devote yourself to something at the expense of everything else - then a dash of autism is essential! And so we have people with autism who are fantastic in terms of, say, statistical or numerical talent who can come up with prime numbers to an almost infinite length and who have fantastic memories and so forth; so there is a difference, but not necessarily a negative difference.
I've been looking at a mixture of individuals who have been followed up over the years, first diagnosed as children and who have continued to be seen by us as they entered adulthood, and they have a wide range of IQs from 30 to 130. We've been looking at particular skills in that group; skills that were not only better than their own level of general ability but better than the population as a whole. Nearly 30% of the group had one, or sometimes more than one, special, isolated skill. Cognitively speaking, there were skills like remembering patterns of numbers, an ability to solve puzzles, that sort of thing. And parents were reporting very good computing skills, calendrical calculating skills (e.g. if you were to tell them your date of birth they could tell if what day of the week it was) and excellent memories, musical skills and so forth. So there are skills which make them different which, for some, can be advantageous. So it's not necessarily a disorder.
I remember a colleague of ours, Ami Klin, from the States was once asked whether he believed Bill Gates had Autism or Asperger's syndrome and he said "Well I don't really know, and am not prepared to make diagnoses of people I haven't met. One thing I do know is that Bill Gates certainly doesn't need my help!"
So, for some people, autism may be as Asperger himself suggested a very positive thing. But in many cases, it is very much a disorder, and I think many problems increase with age. So returning to the debate of whether autism is really a condition or a disorder, historically-speaking there have been all kinds of changes in terminology that pushed people to see it in certain ways.
When autism was first described, the terms that were being used were things like autistic psychopathy, childhood psychosis and early childhood schizophrenia, because, at that time, it was thought that autism was an early form of schizophrenia and it would actually develop into fully-blown adult schizophrenia. Then in the 1970s, with early versions of ICD and
DSM (two forms of psychiatric diagnosis manuals), we started calling it infantile autism, early infantile autism or just plain autism. And then, moving on to the modern day, Asperger's syndrome, or Asperger's disorder as it's called in the states, and autism spectrum disorder, or, again, condition; or pervasive developmental disorder, for the people who didn't quite fit any of the above. It should be noted that these name changes don't come cheap, as the panels for the international classification of disorders probably cost millions of pounds to come up with changes in terminology. But there have been benefits: one is that autism was seen as a developmental disorder and not a psychosis, and not linked to schizophrenia, which led to lots of improvements in therapy as well as attitudes.
When Lorna Wing began popularising Asperger's accounts of the disorder that was named after him, it had a very positive effect in that people started to recognise the needs of people who might be of very high intelligence and have good verbal skills but nevertheless have a number of problems associated with the disorder. A less positive thing than that was, I think, the fact that Asperger's syndrome was sometimes described as mild autism, leading to some people thinking that it wasn't a terribly serious condition and therefore services shouldn't be offered to these people. The final term I mentioned, PDD (pervasive developmental disorder) is used variably to describe people who don't fit any other classification.
Not many parents like it and I had one individual who was given that diagnosis who used to go around saying he had PDD and thought it was a "Pretty Dumb Diagnosis" that didn't mean anything to anybody. So there are changes in terminology some of which have made differences sow of which haven't.
Coming to the disorder versus difference issue, or whether autism is more of a condition or a disorder, the Brits have been more equivocal in terms of where to put their money. The UK NICE guidelines for children, for example, which are the nearly coming to their end now, have used the term autism spectrum disorder; whereas the adult guidelines, that both Simon and I have helped with, have used the term condition: so one indicates that it's a more serious diagnosis than the other. However, other people have tried to get out of the whole argument completely and have just used the term autism, such as in a recent NHS study on adult prevalence; 'research autism' which is the research wing of the national autistic society have also decided not to have any further debate on this and just use the term autism.
In the states they have been much more insistent on the term disorder. So, in the new DSM (version 5) they are keeping the term disorder and have very strongly said that it is a neurodevelopment disorder that begins in early childhood and pervades many aspects of an individual's life. The significantly significant criteria there are persistent deficits in social communication and interactions and restricted and repetitive patterns of behaviour and interests that are evident from childhood onwards. So they have come down on the disorder side very much as a committee. I think that's very much supported by the adult studies that are being done looking at mental health and problems that individual's with autism face. For example, in the survey of adult psychiatric morbidity in England, they have confirmed the findings of child studies that the rates of autism in the adult population are around 1%; and higher in males than in females, giving around 400,000 individuals in the UK with autism.
And that includes people with normal IQ, because not all individuals with autism have intellectual disabilities. Clearly as a group they are socially disadvantaged, and tend to not normally be married and more likely to be living on benefit or in social housing. Educationally, they are also much less qualified and under-supported by social, education, welfare and health services and, generally-speaking, in the lowest quantile for social deprivation. Furthermore, the calculations for the cost of autism across the lifetime are around £3million per person.
Other adult outcome studies have come up with similar results. One, which we're just coming to the end of at the moment, features 60 individuals who were followed up from an average age of around six; their average age is around the mid-40s now, which shows how long I've been doing this. They all had IQs in the normal range as children but, looking at them now, they are functioning as though they are in the severely intellectually impaired range, both in terms of their daily living skills and in performance on IQ tests.
However, things like severe behaviour problems are less common than perhaps one might expect: fewer than 10% of the above group, really just 2 or 3 individuals. But at the same time, fewer than 10% are also living truly independently. And, really, when one looks at the quality of life, only around 1% are living and working in the sorts of environments that most people here would want to live and work in. Another major problem with this group is that many of them actually have hidden carers: they were not severely impaired as children and muddled through mainstream school, and were therefore not known to social services; therefore it is the parents that who have become the supporters. And parents of this group are now aged around 70-90 so there are huge concerns as to what will happen to this cohort, and people of that age generally, when this 'secret army' of carers is no longer there.
Other studies looking at transition to adulthood are showing generally that there is a decline in behaviour problems but there is a considerable increase in mental health problems. Studies in the USA (and here in the UK to a slightly lesser extent) are indicating that around 20-25% develop new psychiatric problems.
In the USA in particular, there are large increase in the use of medication with age. In a recent study in the USA nearly 90% of adults are on at least one medication and nearly half are on three or more. Once they get on to medication, it's unlikely to stop.
I think it's clear that many people have a real disorder, and I also think that just being different isn't quite as neutral as it seems because, really, if you are born with poor eyesight and have to get glasses, or you get fat, or you aren't the normal height, or have red hair, even minor differences like these can lead to teasing, rejection, bullying, misunderstanding and sometimes people even being fearful of you. And scornful remarks can even extend into adulthood, even into places like we find ourselves today (!) with people being referred to as a ginger rodent. So actually, just being different, tends to put you into difficult situations.
Of course, we know that society should embrace differences and we should all change our attitudes and practices and provide all necessary support but, invariably, it doesn't and we don't. And, particularly in times of economic pressure, those labelled as just being a bit different are unlikely to obtain help compared to those who more clearly show that they have a disorder. I think that we only have to look at the current situation where there are hugs cuts in social care and the NHS, and across the board in staff and funding; increases in the number of children in care, increases in the elderly population and increases in unemployment are likely just on the horizon as well. So services are pretty stretched dealing with people in real need and I think you have to wonder what sympathy will there be for somebody who is just described as being different or having a condition. There are a lot of these people, who, of course, are young, who look able-bodied and may have university degrees and never been in touch with social services, even living in supportive families. But how will they seem different from the pictures commonly displayed in newspapers of people lounging around all day watching television? Why should this group have sympathy and that group not? And again, what actions are there for someone who is described as having just a condition or a difference?
I want to highlight the case of Gary McKinnock who got into a great deal of trouble because of hacking, and didn't get a lot of sympathy in terms of his appeal from Alan Johnson and other people. And I think that, in this case, the debate has centred around whether or not he is someone with a disorder, that we should be sympathetic to, or whether he is somebody who's just a bit of a weirdo, or someone who should have known better than to go deliberately hacking in to the pentagon databases
I think you just can't have it both ways; if people want help then it is important to be seen to be having a real need and I don't think people equate differences with a real need for services. As an example of that, I know of an Oxbridge graduate who had gone to work as a lab assistant and decided that the work was far beneath him and who, when he was sent off to the job centre, commented very loudly about the inferiority of the other people around him. He made comments about their race, sex and so forth, and refused to attend for regular appointments and spent most of his time in on-line Asperger's support groups. His view was very much that he didn't have any problems, it was the 'neurotypicals' who had the problem. It was they who needed to change their ways and he was damned if he was going to change his. So, of course, what did change was his benefit payments, and he couldn't pay his rent and ended up living on the street. Every time he got in to trouble his parents told the authorities that he was a person with a real disability and a real disorder but he always maintained that there was nothing wrong with him "It's you guys with the problem!", and not getting any help as a result.
Really I think we need to be fighting for more support and awareness from government generally but all the support services as well (mental health, employment, etc.) and awareness that autism effect adults not just children; and that not having the need of social services in the past does not mean that it won't be required in adulthood. We ought to also recognise that people that may actually look quite skilled: they may have high IQ levels, they may have a university degree, but can still have very significant needs of support because of their social difficulties. And, as I have said, high levels of parental support may disguise their true needs.
So my view is that people with autism often need increased support with age, and, actually giving low levels of support before problems become severe may reduce the costly support later. Prevention is better than crisis management but getting prevention if the condition is just regarded as a difference rather than a real disorder is likely to be much more difficult. I think that difference may well be disregarded by services until it becomes a disorder and then, of course, it's a bit too late. And to just flag up what the economic situation is at the moment with research into autism, virtually all the funding at the moment is going into very young children, particularly the 3-6 age group. Though this is fantastic and has made a big difference to diagnosis and early interventions, the funding needs to be spread much more across the age span. Okay, we've got away from the old institutions that a lot of people with autism ended up in, but the danger is that without support and understanding a lot of people may well just end up on the streets instead. So, I think that's the argument that a difference or a disorder isn't just semantics. My view, having worked with adults for many years, is that calling autism a difference can be quite dangerous, and can diminish the access to support and funding. Although the term disorder may be unpalatable for some, in the end it is more likely to be of help to the many people who need support.
3. ‘Autism: Disability or Difference’ – Professor Simon Baron-Cohen Cambridge University
I want to start by thanking Pat for putting the case very clearly. This has been set up as a polarised debate but most of you won't be disappointed to discover that we might agree more than we differ. This isn't just because I've known Pat for a very long time; in fact, I was just sitting there counting and it was 23 years ago that I was her MSc student in London doing research and sitting at her feet learning about this condition and here we are still debating it. Although the debate has been set-up as Autism being either a disorder or a difference, I've slightly shifted the terminology to from difference to disability and, naturally, I'm going to be arguing that it's not either/or it's both/and. So that gives you the punch line right at the beginning!
If there are people in this room who don't know about autism or the autism spectrum, I'll just say briefly that, a diagnosis rests on the social and communication difficulties, alongside narrow interests - sometimes, pejoratively, called obsessions - and a need for routine. As Pam said, most studies suggest people on the autism spectrum comprise about 1% if the population. Two major subgroups are recognised: classical autism and Asperger's syndrome, and are ultimately a result of the way the brain develops (i.e. they are neurological) and, at root, strongly genetic. So we have these two sub-groups, and they differ in that, although they share the same diagnostic features, in Asperger's syndrome there's no history of language delay and no history of learning difficulties; indeed they can have average, if not above average, intelligence. Whereas in classical autism the person is invariably late to talk; and I think it's worth highlighting that difference.
Classical autism itself is also often split into two: so-called high -functioning and low-functioning autism: IQ. So if you've got average IQ or above and were late to talk, then you'd have high-functioning classic autism. If you were late to talk and you had learning difficulties, as well as autism, you'd be put into that left hand bottom quadrant, and be deemed to have low-functioning classic autism.
Asperger's syndrome; they've got good language and good intelligence but still struggle with communication and social skills. And just to echo Pat's point, Asperger's syndrome is not just the mild end of the autism spectrum. In fact, reported today was the story of a student with Asperger's syndrome who was a medical student and committed suicide just because he wasn't managing to cope as a young doctor with the social demands of his desired profession. So even though he had good academic skills - he was studying medicine at Cambridge - he was suffering from depression and the sense of his own failure in the end turned out to be a lethal disability, and he took his own life. So I don't think we should minimise the severity of Asperger's syndrome for those who have it.
Pat has already talked a little about the terminology and, as we know, the debate was supposed to be about whether the term disorder or difference is better suited to autism, but, to begin with, I think it's important to go over the reasons why some people prefer the term condition in place of disorder, and, actually, I'm going to be arguing that the most descriptive term is probably disability. The Americans prefer the term disorder, so you'll hear the term ASD (autism spectrum disorder).
Interestingly in the new DSM version 5, they also talk about intellectual disorder; so the term disorder is attached to almost all of the diagnostic categories. The reason why some of us in the UK prefer the term condition (as in autism spectrum condition) is that it's slightly softer and it's not implying something is broken: the term disorder implies that we've already identified a cause or a mechanism that is damaged or broken in some way. The term condition, I think, still picks it out as being a medical condition, unambiguously, and the diagnosis is only given out if the person is suffering and seeking help from a clinic, so the term condition is equated with difference: it is still identified as something medical. I think it may be that if people prefer the ‘D’ then we should refer to that as disability as both classic autism and Asperger’s syndrome are unambiguously disabilities.
So if we just talk about classic autism, the low-functioning variety, I think there's no question that it's a clear cut example of disability, and that's because it's associated with a whole range of disabling characteristics and I've already mentioned below average IQ and learning difficulties and, in our society, having learning difficulties is a disability: it makes it much harder to negotiate your way through society. Having a language delay, whether it's a mild one or a severe one that might leave you mute, again, is unquestionably a disability, because it’s interfering with communication. But many people with classic, low-functioning autism, also have epilepsy – clearly a medical condition, clearly disabling – as well as showing challenging behaviours like self-injury. Many also suffer from gut issues such as very painful gut and bowel problems, suggesting that it's more than just the brain that is affected and that it affects other organs throughout the body.
The social obliviousness of people who are low-functioning, and I’m sorry to use that word, I'm just picking out a sub-group, is also clearly a disability if you're not aware of how other people perceive you or you're not aware of how you're meant to fit in into a social group. And, as Pat mentioned, many of that group will have lifelong dependencies, i.e. they will always depend upon the state or their family because they're never going to have independent skills. So, on all counts I think, classic low-functioning autism is a clear cut case of disability.
So what about the high-functioning autistic individual or the Asperger’s end of the spectrum? Well, here is where I would argue that it is both a disability and a difference, so I'm going to have my cake and eat it! So I think it's not either/or, it's both/and. It's a disability because it interferes with social and communication skills, and makes it very difficult to make friends and fit into social groups whether it's at work, school or in the local community. But I think we can acknowledge that at the high end of autism, a different learning style is involved that, right from the outset, what we observe is children, and then adults, learning differently to others; they process information differently and, as well as having their good language abilities and good IQ, we see this notion of having a different learning style express itself in excellent attention to detail; they're always the first ones to spot that something's changed in the room or to spot small details such as repeating patterns. They often develop these very deep, narrow interests in how things work and become fascinated (potentially even experts) in their own topic. They could be described as having a learning style that makes them more like specialists than generalists. So, while most of us are happy to jump reasonably happily from one topic to another so that we have a broad education and a broad knowledge base, but a superficial knowledge in any one area, people with autism tend to focus on just one topic that fascinates them and continue with that single topic until they've exhausted it.
I think what the above has given rise to is the concept of ‘neurodiversity’. This is a term that many of you will have heard of, but it's a fairly recent term and it's really come from individuals with autism talking about their own community; interestingly, they refer to people who don't have autism as ‘neurotypical’. So this is a term that they've come up with themselves and I think it's very important to hear their voice. They might even – slightly humourlessly – argue that it is the neurotypicals with the problem, as it is us who are impaired with our attention to detail, we don't have the deep, narrow interests so we only have quite superficial, social motivations rather than really focusing on how things actually work.
The idea behind neurodiversity is really to raise the question of why we focus on what people can't do: on their weaknesses; rather than what they can do: what their strengths are. And it also introduces this idea that there isn't a single, normal route to adult functioning. That actually we've all taken different paths to the endpoint of adulthood, both in terms of our psychological development, our motor skills and in many other ways: development doesn't follow a single path. So maybe people with Asperger's syndrome are just one example within society of a different route in development and, really, we all have slightly different cognitive profiles: some of us talked earlier than others, some of us may have been more spatial than verbal. But, ultimately there must be room for different kinds of cognitive profiles, and what this has led to – which is very timely – is to make us all sit-up and become aware of the autism rights movement. The more vocal, the more articulate people with high-functioning autism or Asperger's syndrome can talk about their rights and are recognised as a minority within the larger society.
So the autism rights movement is asking us to make space for minorities that have a different cognitive or neurological profile, that we don't have to confer to being the ‘standard child’ developmentally-speaking and, rather than our succumbing to the pressure as parents that children should all be meeting specific developmental milestones, recognising that all children are different and that there will definitely be a subgroup that are going to be taking very different trajectories; rather than insisting on conformity in child development, we should recognise diversity.
We should also not assume that the majority profile is better, and an illustration of this comes from the world of neurology – and Susan will be particularly expert at thinking about these kinds of examples; the first being handedness. We know that 8%
of the population are left-handed (slightly higher in boys than in girls) which means a significant minority of children have a neurological development that is taking a different route to the rest: in the old days left-handedness was taken to be pathological and given the term sinistral, being associated with being sinister or wrong! And I was one of the group in that generation of left-handers who was forced to write with my right-hand because “right-handedness” was the only correct way for child development”.
Today we recognise that there is about 8-12% of children who are going to be following a different route of neurological development and that neither right nor left handedness is better or worse, they're just different. The analogy of people with high-functioning autism, arguing for the difference perspective, is quite clear here. I think that, as Pat has said, research supports the idea that there is an overlap between people who end up with a diagnosis on the autism spectrum and the general population, and I can see in the audience here some of my colleagues from Cambridge Carrie Alison and Bonnie Auyeung who worked on the development of this instrument along with Dr Rosa Hoekstra, who have developed a questionnaire that measures autistic traits in the population: on the left of the graph you see the familiar bell-shaped curve, or normal distribution, in the general population showing that, on this particular scale, everyone in the population is scoring at least something on this measure of autistic traits; so it's not that you have autism or you don't, but that almost everyone in the population has some autistic traits and find themselves distributed somewhere on a spectrum.
On the graph you see the solid line where people have a diagnosis and that they're shifted over, their score is higher, but there is that middle bracket of overlap - there isn't a clear cut point where you can say that somebody who has a diagnosis of autism is clearly different from somebody who doesn't so that fact that it blends into what we might call normality, or the normal typical population, reinforces the idea of individual differences in the population.
So the lessons we can learn from an instrument like this AQ (the autism spectrum quotient) is that although people with a diagnosis of more autistic traits there's a substantial overlap and that actually it's not your score on a diagnostic test that determines that you need a diagnosis, it's actually your environment. Because what you see, and going back to the previous slide, is that there are people who score at exactly the same point in that grey zone in the middle and that some will have a diagnosis and some won't and what determines that is whether you find yourself in an environment in which you can thrive and fulfil your potential - we can call it an autism-friendly environment - or if you find yourself in an environment in which the challenges are too great, and you begin to suffer and end up going to a clinic and seeking a diagnosis.
So it's not your psychological make-up but the fit between you as an individual and your environment that determines if you end up with a diagnosis opening up the possibility that we can adapt the environment to make it easier or more difficult for people who potentially have autism to fit in. Some will suffer in certain environments whereas others will manage because of environmental adaptations or simply a good fit between them and their environment.
So I'm going to conclude that when we look across this very wide autism spectrum, when we look at classic autism, and particularly what is called low-functioning classic autism, those individuals who also have low ability and language difficulties, there's really little controversy about it fulfilling the criteria of being a disability.
When we move to the other end of the spectrum, people who have good IQ, good language abilities and yet still have a diagnosis on the autistic spectrum, what we're calling high-functioning autism and Asperger’s syndrome, I’m saying that there's a mixed picture: they clearly have a disability (and I'll bring you back to the case I mentioned earlier, the very tragic recent suicide in Cambridge) but it's also a profile of difference in that these are individuals that learn differently, think differently and need to be supported differently in the classroom right from the earliest point.
My closing point is that if high and low-functioning autism both lie on the same spectrum, and that actually there's no clear separation to divide them, that actually you need to apply the disability model and difference model to all individuals on that spectrum and I would end by saying that the neurodiversity movement, which is effectively a civil rights movement, is a very welcome contribution to this debate. It reminds us of the importance of taking an inclusive approach that people with disabilities need to be given space in all of our public institutions and communities and, arguably, it's less stigmatising than simply regarding all people on the autistic spectrum as disordered. And I'll invite you to visit our website to re-visit some of the ideas we've mentioned. Thank you.
For more information, visit
Medical Research Council, UK
The Three Guineas Trust