Latitude Festival isn’t all about music and comedy. This year, there was a lot of other exciting stuff, including dance, theatre, poetry, art, history – and science, particularly in the Wellcome Trust Arena. The line-up included an interesting lecture on neurodiversity by Professor Simon Baron-Cohen, director of the Autism Research Centre, and one the judges in this year’s Wellcome Book Prize, an annual award for the year’s best book related to medicine, health or illness (which also had an event at Latitude).
After the talk, Phil Stewart had a chance to talk to Simon about Autism and Asperger’s Syndrome, the benefits and problems of diagnoses for adults, how diagnoses are currently made, and how diagnosis might work in future:
It’s obviously very helpful for children with autism to get a diagnosis, as it enables them to get the support they need while they are still growing – but why should an adult get a diagnosis?
I work in a clinic one day a week for the NHS. It’s a clinic for adults who want a diagnosis. Very frequently what the patient says is that when they get the diagnosis, it comes as a huge relief. Someone’s just told them, the reason why all your life you’ve not quite fitted in – you’ve felt you were different – is because you’ve got Asperger’s Syndrome. And suddenly, there’s a single word for it – or rather, two words – and suddenly your whole life of confusion falls into place. It signposts you to get information, or to meet other people on the spectrum. So there’s a lot of positives in it.
You mentioned an online questionnaire during your lecture. Is it useful with diagnoses?
The questionnaire, by itself it’s not diagnostic – but we know, for example, that 80% of people who take that test who score above 32 out of 50 have a diagnosis.
So if someone scores high, should they get a diagnosis?
Only if you’re struggling. We tell people if you’ve got a high score, and you’re not struggling, you don’t need a diagnosis. A diagnosis is only really to get help. If you don’t think you need help, then carry on without one.
Are there negative aspects of getting a diagnosis? Could someone be affected badly if they were given a ‘false positive’?
I don’t think that’s a problem; I think ‘false positives’ are quite unusual. I think that by the time people end up with a diagnosis, it’s usually because there’s so much evidence pointing at it. It’s usually after a whole day of assessment, when a lot of the evidence is stacking up that this child or adult needs a diagnosis. It’s not quick. Questionnaires aren’t really used, it’s more a diagnostic interview, and observation, and then if it’s a child, they might get lots of reports from the school. If it’s an adult, they are asked to bring their parents along if they are still around, so you can get a picture of their early development, because it’s a developmental condition.
But what I can say about the negative aspects of a diagnosis is about stigma. In an ideal world, there would be no stigma towards autism, but we don’t yet live in that world. We know a lot of people get teased for being autistic, get bullied, get spat out, or discriminated, all that stuff. So somebody might think, ‘Should I get a diagnosis? Is it actually going to make my life better or worse?’ And that’s something that people have to consider. Some parents try to avoid their child being diagnosed, because of fear of stigma. Some adults try to avoid it because they think ‘Will my employer discriminate against me?’
Do you think that getting a diagnosis can influence someone’s behaviour? For example, could someone after diagnosis research what the symptoms of the condition are, and make their behaviour fit the description of what it ‘should’ be?
What I would say is that in my clinic, some of the patients – if we can call them that – once they get their diagnosis, they think ‘all my life I’ve struggled to fit in, struggled to try and be sociable, but the way my brain is made, social skills just don’t come naturally to me, so I can now give up trying and I can be who I am,’ which could make them look more autistic.
During an assessment for autism, how can you be sure that the traits common to autism are caused by a neurological condition, as opposed to stress or some other cause?
So the thing about Autism is you’ve got the social difficulties, then the communication difficulties. You also have these unusual narrow interests – obsessions – and what you are looking for when you make the diagnosis, you are looking for all of these things. It’s like a constellation that comes together. So if you just had somebody who had social difficulties, you’re right – that could be due to all number of things. It could be due to anxiety, being shy, having been abused, or having had a bereavement. It could be a whole bunch of reasons. You wouldn’t know that that’s autism. But if they’ve also got, alongside the social difficulties, if they’ve got these obsessive interests, and not being able to deal with change – so quite repetitive behaviour – it’s that combination that makes you think this could be autism.
But could those other traits also have other causes as well, so you could have a ‘false positive’, because the person being diagnosed has all the common traits?
You could, yeah you could. Diagnosis isn’t an exact science. It’s a clinician giving an opinion, and you could go to another clinician who might disagree. You could have some of those traits, or characteristics, in isolation. So somebody might be very repetitive in their behaviour, and it might not be autism, it might be for some other reason. There isn’t a medical, biological test. There isn’t a blood test for autism. Yet.
So are there physiological differences between autistic people and neuro-typical people?
There are lots. If you do brain scans, you can see differences. If you have a group of people with autism, and a group of people without autism, and compare them, on average, you can find lots of differences. For example, in early childhood, in autism the brain is larger, it’s growing more quickly – that’s one difference. You look at specific bits of the brain, there’s a bit called the corpus callosum, which is the connective tissue between the two halves of the brain. That’s smaller in autism, compared to a non-autistic group of people. There’s another bit called the amygdala, which is the emotion centre of the brain, that’s larger in autism in childhood.
What about in adulthood?
You can still find differences in adulthood. For instance, 90% of people with autism have sensory issues, usually hypersensitivity. So in an environment like Latitude – very noisy – someone with autism might hate it, because every sound is magnified, every texture is magnified. If they don’t like the feel of their shirt against their skin, they’ll just refuse to wear that shirt. They pick up on a lot of detail that other people don’t experience.
So why aren’t these physical differences used as part of diagnosis assessment?
Because none of the differences would be accurate enough to be diagnostic. The research simply shows that, on average, people with autism have one kind of brain; on average, people without have another kind of brain. If you looked at an individual, it wouldn’t be diagnostic. You’d get a lot more ‘false positives’ using brain scans or blood tests. We haven’t found a specific enough biological marker, but that’s what we’re hoping for. Even 90%, isn’t good enough. Because what we are looking for, for a diagnostic test, it’s got to be as close to 100% as possible. Basically, you have to find is something, 98% of people with autism share on a blood test or something, and only 2% of the general population have. So you are looking for something that’s really obvious, and what wouldn’t have too many ‘false positives’. But that hasn’t emerged yet.
How would you find one?
It might be a combination of genes, people are looking at genetics. It could be proteins in the body; you can measure pretty much any protein in the body, and get a signature that might be autism. But nothing’s emerged at that level of accuracy. There are differences that come out at 60-70% with people with autism, but that’s not good enough to be diagnostic. But it’s on the way.