Simon Baron-Cohen: Do autistic people get enough support?

In this edition of The Naked Scientists, Titans of Science continues as Chris Smith chats with autism research pioneer, Simon Baron-Cohen...

Chris - One other interesting characteristic, I remember watching a Horizon programme years and years ago when I was smaller, being absolutely transfixed because it was showing individuals like Stephen Wiltshire, the child who could take a look at a London skyline and reproduce that down to a level of detail that only a photograph could really capture. And individuals who could listen to a piece of music once, and they had it, people who could predict the day of the week it was given a date, way back 100 years ago, and they do it in seconds, faster than a guy with a calculator. That's savantism, isn't it? And that seems to be tied up with autism as well. Why? Do we have any insights into how people develop these incredible traits and abilities? What is it about the way their brain is working, endowing them with that ability?

Simon - Yeah, we've just started to study looking at the brain basis of savantism in autistic people. So savantism, you know, classically was most clearly seen in individuals who have autism and a learning disability, and yet they have one area of their cognition, which is at an exceptional level. And it might be music, as you said, or it might be drawing, might be learning languages or mathematics. But that level of skill is not only exceptional for the general population, but it's out of keeping with the rest of that person's skills. And, you know, my best guess is that systemising, which I talked about earlier, it's a psychological process where the brain analyses patterns in the world might be playing a part because most of the areas of skill that are associated with savantism involve pattern recognition, mathematics and music being the clearest examples. But we need to sort of understand where systemising takes place in the brain. And we can break down systemising into sort of more granular parts like attention to detail. And it may be that autistic people who become exceptional just have greater attention to detail and much faster recognition of those patterns.

Chris - Can we see that reflected in brain scans, for example, do they have a richer connectivity between the bit of the brain that decodes sound and the region that would generate the movements to move your fingers on a computer keyboard or a piano keyboard or the visual cortex to process an image and connect that to your memory? Can we see that reflected in functional imaging?

Simon - Yeah, so that's exactly what's needed. It's functional imaging so that we're not just looking at brain structure, but which parts of the brain are being used whilst they're doing a task. As I said, so far, the studies in the past have been probably too small, underpowered to detect those differences. So we're trying to do something at a larger scale to really try to understand it better. But you know, I'm glad you've mentioned savantism for two reasons. One is that it reminds us that autism isn't just a disability, it can be associated with strengths. But I suppose there are dangers with this too, because there'll be lots of people out there listening, parents, for example, or autistic people themselves saying, well, those individuals who are autistic and are savants, they often get all the publicity, because what they can do is often quite sensational. But that's not necessarily representative of most autistic people. So we just need to remember that, you know, this is a reminder really, to all of us, that autism is really quite varied. And maybe we'll come on to this, but we need far better support services for autistic people, because at the moment, it's woefully inadequate.

Chris - I was just going to say, it's fair to say, we have a crisis of diagnosis and support, don't we? Because the number of people queuing up to say, I feel like there's something going on with me. And I don't know what it is, but I would be enormously reassured to get it investigated. And they can't access that. And parents are the same. And the number of people is out the door around the street. So that's one problem. But having that almost label, I mean, we're careful with that word, but having that label, why does that help people?

Simon - So on the first point about the long waiting lists, so we talked at the beginning of our conversation about how autism has gone from rare to very common. And actually, it's been estimated that there's been an 800% increase in prevalence over the last 20 years. So that has led to a crisis in diagnostic services, the services just can't keep up. And it may be a reflection that autism isn't prioritised by the NHS and social care. But then you brought up the other point, which is even if you're lucky enough to get a diagnosis, and many people are being forced to go privately, you know, what then? You've got, we've got the label and the label can be a huge relief to a person, if they've been struggling, they've experienced a sense of being an outsider, a sense of exclusion, just not fitting in, you know, knowing that it's for reasons to do with your genetic makeup, for example, can be a huge relief that there's a word for it. But ideally, the diagnosis should be your stepping stone into support services. And those are again, I mean, it's very, very concerning how lacking they are. And it's probably the explanation for why three quarters of autistic people are not only autistic, but have poor mental health, depression and anxiety. Those are you're not born with depression and anxiety in the way that you're born with a likelihood for autism. But the depression and anxiety probably flow from not having the right support.