Geoff Bird is challenging our perceptions of autism and offers a message of real hope to those living with the condition and their families.

Photograph of Geoff Bird

He’s a bit late and profusely apologetic, and unlike many Tutorial Fellows at Oxford does not have a room lined with walls of books. Professor Geoff Bird, Tutorial Fellow in Psychology at Brasenose College, has barely had time to turn the lights on since moving to Oxford at the start of 2017, hitting the deck running in the middle of an academic year.

The larger reason, I suggest, is that he’s a man with a mission, given that Oxford wants to be better known for its autism research.

‘Yes, I want to establish it here – it means applying for funds, building a database of volunteers for experiments, and acquiring the testing facilities we need. It won’t happen overnight.’

Assuming all that was in place, I ask rhetorically, what then?

He replies by noting a particularly satisfying experiment he conducted in 2010, that proved, with brain scanning (functional Magnetic Resonance Imaging is the full term, fMRI), that you can be diagnosed with autism but still show empathy. Equally and just as importantly, the experiment showed that non-autistics may lack empathy.

The condition that describes this lack of empathy is called alexithymia, and affects roughly 8% of the general population, says Bird. Autism affects 1% of the population. ‘Alexithymia and autism are completely independent of each other,’ he says, ‘…yet even now we are told time and again that autistic people lack empathy. Of course some do, but many do not, and this is really important because it has large consequences for how they are treated by society and whether, for a practical example, they can volunteer their time or find work.’

The difficulty with alexithymia, Bird explains, is that it’s a newish concept having only emerged in the very late 1970s, and even then on the couches of therapists, ‘a psycho-dynamic Freudian thing…’ So to this day it does not appear in the Diagnostic and Statistical Manual of the American Psychiatric Association. Only in the past fifteen years have more established cognitive neuroscience studies been conducted on alexithymia, including Bird’s experiment of 2010.

‘Ask anyone in the field,’ says Bird, ‘what characterizes autism, and they’ll say a lack of empathy. An autistic person can’t recognize emotions. Sometimes they can’t engage in moral reasoning. We think that’s completely wrong. Completely inaccurate.’

About half the autistic population have alexithymia, when they have difficulty determining which emotion they’re feeling. ‘They’re not sure if they’re sad, angry or afraid – a moderate level of alexithymia – or at a more severe level they might not be able to distinguish between having an emotion and feeling hungry, for instance. What we’ve shown is that the supposed emotional deficits of autism are actually due to alexithymia.’

What follows is of great significance for society’s treatment of autistic individuals, but Bird is at pains to note that this theory has not been proven beyond doubt, but rather that he and certain colleagues have been working hard on defining alexithymia, and that they believe they have the explanation. ‘We wondered if it [alexithymia] rested on a failure of something called interoception, a term that refers to a person’s understanding of their internal state.’ He explains how interoception refers to how good you are at working out that you are hungry, or that your heart is racing, what makes you ‘feel an itch’ or ‘feel an achy muscle’? He describes these as ‘very specific anatomical pathways.’

‘So we wanted to then establish whether alexithymic individuals had a really poor ability to monitor the state of their bodies and lots of research later, we believe this is the case.’

‘It would appear that the interoceptive system is abnormal in sufferers of alexithymia, so they misclassify these signals from their body. If they are stroked by a parent they might feel pain.’

‘This is important. It takes you straight back to sleeping difficulties and other sensory symptoms reported by some autism sufferers.’

Professor Bird believes that over the next two decades, assuming that he is broadly right about the role of interoception, it will lead to pharmacological modulation – which in lay language means medical cures.

Taking the very long view, he notes that the 1960s saw incredible advances in understanding of autism, but that since then there has been very little advance. Yes, he notes, there have been excellent cognitive theories about what autism might be. ‘Yet for all that, we have no idea what the genes are for autism; we can’t find the brain abnormality for autism. We have really struggled to find the problem to be solved.’

His broader message to the community is that ‘individuals with autism are not unempathic, psychopathic monsters. This is really important. We can’t be wrong about that one. …I have heard so many stories about people who simply cannot get jobs or even volunteer their time because of this damaging myth, which causes additional frustration for the parents of autistic individuals. Individuals with alexithymia are also not psychopaths of course, although they may struggle to understand emotions in a typical way.’

Asked what he’d recommend as reading for a lay audience who are curious, he immediately mentions his former colleague at the Institute of Cognitive Neuroscience (ICN) at University College London (UCL), Professor Uta Frith. She is the author of OUP’s Autism, Very Short Introduction. He also recommends Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity, winner of the Samuel Johnson Prize in 2015.

While he is clear about his challenge at Oxford, to establish a reputation for excellence, he begins with one particular ally, Professor Russell Foster, also associated with Brasenose and Director of the Nuffield Laboratory of Ophthalmology and Head of the Sleep and Circadian Neuroscience Institute. When Oxford Today did a piece on his work about why we’ve lost the art of sleeping, it was very popular.

So the research around interoception concerns the whole population and not just sufferers of known dysfunctions – and at that point Professor Bird grins for the camera – he has good reason to be excited by his subject, not least because it has the promise of huge impact across a large population.

Professor Geoff Bird is Tutorial Fellow in Psychology at Brasenose College and Associate Professor in Experimental Psychology. His PhD work (which was supervised by Professor Cecilia Heyes at UCL), was on the mechanisms by which we imitate the actions of others. After this he moved to the Institute of Cognitive Neuroscience (ICN) at UCL, where I worked with Professors Chris and Uta Frith on Autism Spectrum Disorder (ASD). Since then he has worked at The Centre for Economic Learning and Social Evolution (ELSE), and Birkbeck; then the Institute of Psychiatry, Psychology, and Neuroscience (IoPPN). He moved to Oxford in January 2017.

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Comments

By Chris Pappas
on

Seriously? Please search Temple Grandin. She is a highly functioning autistic who has attained academic degrees and is a foremost spokesperson for autistics.

I think that she has a better "clue" about all this!

By Peter Marx
on

Alexithymia sounds rather like Asperger's syndrome, which people now want to lump in with autism for reasons that are not clear to me as there seem to be many points of distinction. I look forward to hearing more.

By Sonja
on

Really interesting story, giving hope to many.
But I do have a negative comment on the article - I never realised that autistic individuals are perceived as 'unempathic, psychopathic monsters'. Are you sure that in today's society this is the case? Were these the professor's exact words?

S

By L. Mannings
on

An irritable nervous system is one common characteristic. Vey happy that Professor Bird and Oxford University will be working in this area.

By Kerrie J Berroyer
on

do you not think this is a condition that just needs to be accepted and understood - for it means people who have the condition experience empathic emotions , naming them is the challenge...why can it not be seen as difference instead of abnormal, and why again do we feel the need to drug people to become, NORMAL again???????????? its just a constant barrage of curing autism through some way or the other or aspects of it...

By C Frank Green
on

An interesting article, though I note that he has failed to note that we get emotional overloads as a response to being empathic but not being able to respond constructively to the input.

Although overload is not pleasant I would rather have them as opposed to being 'tinkered with chemically' in order to satisfy some scientific desire to make autistic people 'normal' - I have yet to find a definition of the average of human psyche, emotions, interactions, etc. that would satisfy me.

Why this fascination with labels?

I am as I am: accept me as I am.

By DoraSchmora
on

If he had asked any parent with an autistic child they could probably have told him that autistic people are some of the most empathetic there are, to the extant that other peoples pain can cause them actual pain. I am glad they are laying that particular lack of empathy theory to rest at long last. My qualifications, two sons with high functioning autism.

By Vibha
on

Very interesting research. As a mother of high functioning autistic child , I find this article very interesting.. I would like to know more about his research

By Janice Hansford...
on

At last! Something which starts to make sense. I am so glad you dare to say that "individuals with autism are not unempathic, psychopathic monsters:" a concept which seems to be increasingly popular but appears to be wide of the mark. How may I find out more about your research, please?

By David
on

As a parent to children with autism, I find this article very concerning. Why should we need to find a cure through drugs? Autism does not mean my children can't love a full life, so why does Prof Bird thinks that they need to be cured? In such an attitude far from helping neuro diversity, Prof Bird is promoting a narrow focus and effectively saying that those with autism have something wrong which can be cured.

The only thing wrong is his attitude and seeming reluctance to accept our children for who they are. This is not a message of hope, but a message of fear that our children will end up being permanently medicated to make them conform to society and Prof Bird's idea of what's normal.

By Patricia McDonald
on

This is very interesting, my son has Aspergers and has suffered with depression since he was a young boy. He also has problems sleeping, is accused of coming across as angry and unfeeling when dealing with others.As he is now 49 years old, we have discussed empathy and he says far from not feeling any emotion he feels too much, which is hard too deal with. The continuous efforts of council/ social services and mental health not to provide adequate support for adults will surely undo all the good research being done. My son also says if you want to know more about ASD ask the adults who have lived through being abused, ignored, bullied and attempted suicide to try to be"'normal".

By Julie Hawkins
on

I found this article intriguing.
I have always had what I call "Emotional Dyslexia", I don't understand my emotions. Also I confuse internal feelings with emotions. I am hyper-empathic and really seem to "get" people without knowing why.
I work in children's services supporting children and families, so this is really useful.
(I have a diagnosis of ADHD but have been told I wouldn't get a diagnosis of ASD because I am too sociable.)

By Julie Hawkins
on

I found this article intriguing.
I have always had what I call "Emotional Dyslexia", I don't understand my emotions. Also I confuse internal feelings with emotions. I am hyper-empathic and really seem to "get" people without knowing why.
I work in children's services supporting children and families, so this is really useful.
(I have a diagnosis of ADHD but have been told I wouldn't get a diagnosis of ASD because I am too sociable.)

By Emily Driver
on

I find it rather worrying that Prof Bird refers to "autism sufferers". My son doesn't "suffer" from autism, he is autistic, or if you prefer on the spectrum. It's not an illness! More empathic language would be welcome.

By Holly Bridges
on

This is very exciting and I am glad that this kind of language is finally starting to seep into our understanding of autism... but why do we need a drug for interoception? We can teach interoception, its easy. www.zebr.co

By Gillian Mead
on

My daughter is now 42 years old, we have have been on quite a journey putting together pieces of her Autistic 'jigsaw' puzzle over decades, one vital piece was only recently uncovered, it is extreme demand avoidance which leads to life altering anxiety disorders, this has effected her in all her important milestones. and continues to do so, I pray that all at Oxford avidly research into the life damaging issues for autistics around their extreme anxieties. Thank you all concerned.

By Ismi syliab
on

This is a very interesting area of research and I can say from experience that it aligns to an aspect of being autistic. However autisms complexity shows that we cannot look in isolation at one area . What is key is that individuals that are autistic and do not accept any heiracy in autism, are included in developing and researching solutions, not just marginalised to test subjects. Although exciting this article comes across as a little arrogant and uses generliatic terms that are not accurate at all.

By CarrieH
on

I do hope this research will trigger further research in areas like eating and feeding disorders as people on the spectrum are not getting the support and understanding they need at a professional level.

The observation that people on the spectrum may find it hard to distinguish between things like emotion and hunger is something (as a parent of a 20-year-old woman) I have long suspected.
My daughter has a lifelong history of (NHS diagnosed) food allergies/intolerances/food sensory issues but she recently had the distressing experience of being hospitalised (as an informal patient albeit under explicit threat of MHA section) for an eating disorder as she stopped eating when she became severely depressed and her weight fell from 7.5 stone to just over 6 stone (BMI=15). Ironically, she did not meet the IP ED care pathway criteria (BMI<13 or medically unstable) but sometimes it seems NHS staff make up their own rules. Her lifelong dairy free dietary needs were not met in either of the two hospitals she attended, and her ASD interoception difficulties prevented her from opening engaging in discussions to explain her personal difficulties. We therefore (as the parents of an adult with capacity who wanted to continue to follow a dairy free diet) had to purchase and provide all the dairy free food items she needed because RAST tests only showed positive (IgE) results for egg not milk even though it is recognised (NICE guidance on food allergies and intolerances) that allergic reactions may be immediate (IgE) or late onset (none-IgE). My daughter had insight into her condition and she self-discharged as soon as she felt able to do so without fear of MHA section (BMI=18).

I recently contacted NICE to ask whether they could make reference in their guidance on eating disorders to people who are autistic and/or who have food allergies/intolerances only to be told “The guideline development group (GDG) was aware that healthcare professionals have raised the possibility of eating disorders being a coexisting condition with autism, but at the current time the evidence is not strong enough and the clinical view within the GDG was that this should not be listed as a coexisting condition that should be systematically looked for. Therefore, until more evidence is made available this isn’t something that we would consider”. Sadly, given my daughter’s immensely distressing experience last year, I now have no confidence in NHS Eating Disorder Services (community or inpatient) providing such evidence so independent research like this is much needed.

By Paul Berry
on

The research is heading in the direction of pharmacological intervention, in my humble opinion, wrong direction. As an emotion focused therapist I have noticed something about autistic spectrum, in part, it's an attachment injury. Professor states ‘Yet for all that, we have no idea what the genes are for autism; we can’t find the brain abnormality for autism' and you won't. Alexithymia is an attachment injury, not really what you want to hear when you want to make prescription drugs.

By Kievian
on

I understood that Empathy Deficiency DIsorder arsose from a failure, or misfunction of mirror neurones.
For example, a child deprived of skin to skin contact in early life would be likely to grow up unable to appreciate the effect of physical contact on another person and would try to avoid it. They might enjoy sex but not relish intimate contact. Eventually their marital relationship would beak down because neither partner understood the origin of their problems. I believe this is more common than we realise. (I encountered this analysis in an article on autism.)

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