At the British Neuroscience Association (BNA)’s Festival of Neuroscience in April 2019, we were lucky enough to sit down with some influential neuroscientists to discuss their work. We’ve assembled these transcripts into our BNA Interview Series. Here, we interview University College London Professor Uta Frith on her pioneering work into the neuroscience underlying the neurodevelopmental condition autism spectrum disorder (ASD).
Ruairi Mackenzie (RM): Before your investigations into autism, how did scientists perceive people with this disorder?
Uta Frith (UF): Autism was identified in the mid-twentieth century independently in America and Austria. Suddenly people recognized this image, this picture and they could suddenly find more cases. Before, it just wasn’t visible. It’s absolutely fascinating that that sort of thing could happen. You need a label, you need a name to crystallize ideas. So people at first thought it was incredibly rare. When I started being really interested in it, I got the question, “Why study something so ridiculously rare? Would it matter?”
At the time I started doing my PhD in 1966, autism really was not at all well-known but it was possible – my mentors had already pioneered an approach which used proper psychological experimentation and observation, not just anecdote and interviews – to find out actually what was the matter. You need to be able to describe and measure what is meant by autism. What are the core symptoms? How can you actually assess them? So that’s what we did.
Various hypothesis that might explain autism had been proposed – they were all wrong and for decades, you went from one blind alley to another. It became more and more urgent to find some way of addressing this core problem that autism was normally called social impairment but that’s far too gross. It’s not that everything is impaired in social interactions but something very specific in reciprocal social interaction. Now what could the reason for this be?
This is where the team that I led at the time came in, was this idea that it had to do with some, until then pretty much unknown, cognitive ability to attribute mental states to other people in order to predict what you are going to do next. So it’s an extraordinary thing to even come up with but the time was right, and the paradigm was available. This was the first time that you could see a little foot in the door and say yes, that could explain this particular impairment in reciprocal communication. Now the way that we communicate is that I am consciously tracking what you might want me to say, what you already know, what I shouldn’t say.
RM: What would you highlight as being major milestones along this path to opening this door?
UF: I think it was a bit of serendipity, but also being very, very much alert to what was going on in other fields in psychology at the time. One of the key papers towards this idea called Theory of Mind actually came from animal observations, from observing and experimenting in a very beautifully designed way with chimpanzees. So the first paper that had the title The Theory of Mind was about chimpanzees.
RM: What happened in those research experiments when tested in children?
UF: We were very surprised to get the results we did because the experiments were done with children who were quite able but could not answer a very simple question about what a character thought about the location of an object. So an object was moved from one place to another without the protagonist being present, so couldn’t know that it was put into another place. Now for four or five-year-old, normally developing children this is absolutely no problem. They immediately know that the protagonist wasn’t there, didn’t see it, and couldn’t know. That’s what the autistic children who were already nine years old could not do. They seemingly could only say that that character would look for the object where it really was. So in other words physical reality trumped knowledge, while in all our normal cases it’s the knowledge and the belief that trumps reality.
RM: Compared to our understanding of some other disorders we have reorganized our thinking about autism so much and we now class what we once just called autism under the spectrum of ASD. What is the history of this reclassification?
UF: Yes. That’s been a big, big change. The recognition that it was a spectrum took quite a while to get hold because as the children got older, as they developed, we continued studying only children – can you imagine? We didn’t know what would happen when they were growing up. But we soon knew that they were still autistic when they were adults. Suddenly we could also see that people who were in wards and psychiatric hospitals and classified as negative schizophrenics probably were really autistic. So, we suddenly realized that there were lots of shades of these social problems. Of course there are other cognitive problems and strengths as well as weaknesses which is very interesting, but the Theory of Mind problem seems to be the one thing that unites all the conditions under the spectrum from one end to the other. At least that’s still the theory, it remains to be seen whether that is the case because the spectrum is becoming wider and wider, especially to encompass, I think, people who just might have that variant of personality that makes them a bit introverted and a little bit obsessive and a little bit… we all know what we mean when we say “a bit on the spectrum”. The question is are they on the spectrum. I actually wonder.
RM: Where do you draw the line?
UF: That’s very difficult because the behavior never draws a line, it’s always smudged. It’s always a continuum. Where do you draw the line? I think it’s at the cognitive level, at the brain level that perhaps we are able to draw a line and we are able to say, okay, that kind of behavior is maybe more a choice and the same kind of behavior by another person is not actually a choice. That would be a way but it’s easy to say and very, very hard to measure.
RM: Do you think the focus of research should be to develop a ‘cure’ for the disorder or should it be to work on improving the lives of people with autism spectrum disorders?
UF: Well, first of all, there is no cure. Let’s face it. Secondly, because of the spectrum you could never say one thing will fit all. The people that I have just been mentioning who are the sort of borderline, they may be on the spectrum or they may not be, they may just be slightly problematic personalities with slightly obsessive tendencies. I would say it would be ridiculous to say they should get some kind of cure or treatment or that they should be labelled or stigmatized or anything.
We are now talking about different forms of autism which often co-occur with absolutely devastating neurological conditions, including, for example, epilepsy, not being able to speak and maybe very difficult behavior problems that have to do with self-injury. In those cases I would say yes, please let’s find a cure, but there isn’t one. It is really very distressing. So far, despite a lot of attempts, it seems we can alleviate symptoms, particularly secondary symptoms like high anxiety, or very frank ADHD co-morbidity, but the actual core problems of autism, these interesting cognitive patterns or ability, they seem to be quite untouched.
RM: Do you think that we should target these co-morbidities which have devastating neurological effects, if we were to find some way of bringing a cure to those effects?
UF: That would be good. To some extent this is happening – improvements can be made, and they really matter to the families and the people affected. For example, sleep problems are a very common problem. You can actually, in many cases, do something about that.
RM: Is the idea of neurodiversity, something that you have noticed coming into the research community and become more accepted?
UF: Absolutely. It is a new concept. It’s very interesting. It brings in the people with ASD themselves – to get their own voice heard. When I started it was quite impossible to even think that you would get some information. I always talk to parents and to teachers and these were the sort of main informants, and it took quite a long time, it dawned on me, yes you can get information from those people who have the language, who can really talk to you. This is now really taken for granted that you should ask “What is it like? What do you think should be done? What are you feeling?” And that is all about neurodiversity. I think it’s also very nice, it’s a much more tolerant approach in society also to say not everybody is Mr Average or Ms Average.
RM: Is anyone just normal?
UF: Exactly. Those of us who can adapt should adapt, those of us who cannot adapt, maybe we should try and work around them and give them as much support as we can.
Uta Frith was speaking to Ruairi J Mackenzie, Science Writer for Technology Networks. Interviews have been edited for length and clarity.