Seeing things differently: Why scientists are calling for greater awareness of synaesthesia

It is a brain condition that affects an estimated four per cent of our population, so why is it that parents, teachers and doctors are so often unaware it exists? As calls are made for greater recognition of synaesthesia amongst professionals, Katie Strick meets the ordinary people who see the world in extraordinary ways, thanks to a harmless brain phenomenon that causes a fusion of the senses.

“DON’T tell anyone else,” the doctor instructed April when she first told him she saw her pain in colour. April did as she was told. For twenty years, she did not tell a soul about the muddy orange migraines, the rippled-violet toothache, or the redness of childbirth. She did not tell a soul when she would crank up the music and drive through the night in a crazy video kaleidoscope of translucent ribbons and colour washes. She did not even tell a soul when her pain became so opaque she had trouble seeing anything at all.

“I learned at an early age not to bring up what I see,” says April, today. “Bringing it up can cause problems for me socially. I suffered from terrible migraines as a child, and when I told my mum what I was seeing, she assumed I was hallucinating.”

‘Seeing’ music: New York artist April Johnson with one of her paintings (Image: April Johnson)
‘Seeing’ music: New York artist April Johnson with one of her paintings (Image: April Johnson)

The 45-year-old recalls being sent to the school nurse after mentioning the colours she saw in music lessons. “I was mortified,” she says. “I think that solidified my status as ‘odd’ in school. I was a ‘day dreamer’ and a ‘space cadet’. I was misunderstood.”

But April was not hallucinating, nor are her experiences unusual. April Johnson from New Jersey is one of millions of people who – whether they know it or not – see the world in a different way to most, through a condition called synaesthesia.

“Doctors, parents, and educators should all be aware of this condition to avoid showing misplaced concern when hearing a synaesthete’s unusual description of the world”

Believed by researchers to affect an estimated four per cent of the population, synaesthesia is a neurological condition in which stimulation of one sense leads to automatic, involuntary experiences in a second sense. Synaesthetes may experience any combination of the senses, from associating letters and numbers with colour – the most common form – to ‘seeing’ music.

Neuroscientist David Eagleman from the Baylor College of Medicine in Texas says that although there is no need for synaesthetes to seek medical help, there is still a greater need for awareness of the condition amongst professionals. “Doctors, parents, and educators should all be aware of this condition to avoid showing misplaced concern when hearing a synaesthete’s unusual description of the world,” he explains.

“It is far too common for synaesthetes to be stigmatised as saying something ‘crazy’ when they describe their perceptual experience. Given the high prevalence of synaesthesia, doctors need to know about this phenomenon in case they mistake it for a peculiar type of cognitive fragmentation.”

Professor Fiona Newell from Trinity College Dublin agrees that doctors should be suitably trained to recognise the condition. “What you don’t want is to end up treating something as a disease when it isn’t at all,” she says. “Any profession which involves meeting the public should be very aware of this condition, and realise how it’s defined.”

55-year-old James Wannerton from Blackpool recalls how his parents took him to see a doctor about his ability to taste sounds at the age of ten. “The doctor said it was just a part of growing up; that it was an overactive imagination,” he remembers. “It was when I was 18 that I went to a psychiatrist, and it took me two years to convince them it was real.”

James was the first synaesthete to be examined properly in the UK. In 1999 he was referred to the Maudsley Hospital Head Trauma unit in London, where he underwent a series of consistency tests.

“It all seemed like one big test to try and catch me out,” says James, who is now president of the UK Synaesthesia Association. “They just thought it was some sort of memory trick – even I began to think that after a while.”

In his 2011 book ‘The Tell-Tale Brain’, neuroscientist Vilayanur Ramachandran describes a case where one synaesthete was misdiagnosed with having schizophrenia and prescribed antipsychotic medication to rid her of her hallucinations.

But misdiagnosis of synaesthesia, it seems, is not confined to the doctor’s surgery. For many synaesthetes, the classroom can be a place of stigmatization and misunderstanding, where unusual remarks or struggles with concentration can too often be mistaken for bad behaviour.

Abi Watt, a student at Strathclyde University with sound-colour synaesthesia, says she was very distracted in school. “I was a nightmare. I would get up in class and my concentration was poor,” she says. “When I hear noises, I see colour all the time. It’s like when you stare at the sun too much and your eyes go a bit funny.”

Although she has learnt to deal with her synaesthesia over time, Abi says she has often received strange looks when speaking about her experiences. The 19-year-old recalls an English lesson where she put up her hand and said she had synaesthesia. “Suddenly I realised that 20 people were looking at me. Some thought it was cool, but others were like ‘What is that weirdo doing in my class?’ That’s when I realised people don’t always understand what I have,” she says.

James Wannerton, who now works as an analyst in IT, recalls how his synaesthesia distracted him in school. “It never used to cause me problems until exam-time,” he says. “We used to sit in breezy halls, and I found it very difficult to concentrate because of all the sounds and tastes.”

The 55-year-old says he chose a profession that kept him in isolation, because he finds it difficult to concentrate in social environments. “People notice that I get overwhelmed,” he explains. “The only analogy I can draw is when you’re trying to read something or have a conversation, and somebody is flashing a bright light in front of your face. It’s very off-putting.”

Ian Jordan runs a multisensory optical practice in Ayr, Scotland. As a specialist in visual stimulus, he says he treats one or two synaesthetes every day, and often those whose visual problems inhibit their learning abilities at school. “People don’t believe them, first of all,” he says. “So the person is consistently a liar. Then they’re told they’re stupid, so they’re often bullied. They start not trusting themselves.”

“Synaesthetes tend not to be aware that they are different. Many of them say ‘Oh, I didn’t know there was a name for that'”

He says a major problem is the lack of awareness of synaesthesia. “Most of the medical and para-medical professions haven’t even heard of it,” he says. “But for synaesthetes it can be very, very confusing.”

Professor Newell stresses the importance that teachers are aware of the condition. “First and foremost, they must know that it’s not psychiatric or medical or anything unusual in that sense,” she says. “I think it’s important that every educator should know about synaesthesia. I would go so far as to say that it should be part of their teacher training, so that they don’t react negatively to a child that might present these types of experiences.”

She and her colleagues at Trinity College, Dublin regularly engage with the public to raise awareness of synaesthesia. “Last month I gave a talk to a group of school children about the condition,” explains Professor Newell. “Synaesthetes tend not to be aware that they are different. Many of them say ‘Oh, I didn’t know there was a name for that’.”

But Newell highlights the importance that recognition is positive. “We have never met anyone who wants to lose their synaesthesia – everyone finds it beneficial,” she says. “Teachers should get children to use their synaesthesia in practical ways. For example, you might take notes in a colour that is consistent with your synaesthesia, and that will certainly help you remember.”

Jamie Ward, a professor of cognitive neuroscience at the University of Sussex, echoes Newell’s suggestions. “I get lots of emails from parents assuming that anything their child is having a difficulty with must be because they’ve got this unusual thing called synaesthesia,” he explains. “Actually the evidence for this is very little, and labeling children as different can sometimes do more harm than good.”

He suggests that the crucial point for teachers and parents is to know that the condition exists, and to recognise that it can sometimes be counter-productive for subjects such as maths and spelling. “It’s a double-edged sword,” he says. “Synaesthetes tend to have this visual style of thinking; it means they can see things better, they see colours better and see things that other people might not.

“But they are also more visually sensitive, and potentially more sensitive to migraines. We do have reports of some things being problematic – numeracy is one of the things that is reported quite commonly.”

“I don’t care if people say it’s a disorder, because I know it’s not”

James Wannerton echoes Professor Ward’s suggestions. In his role as president of the UK Synaesthesia Association, he talks at schools to promote understanding of the condition.

“I’m just trying to make people aware of the name synaesthesia itself,” he says. “I don’t care if people say it’s a disorder, because I know it’s not. It affects four per cent of the population, so out of one hundred pupils, there are going to be at least four synaesthetes in there. I’m pretty sure I could convince everyone they’ve got it.”

The vast majority of synaesthetes who are aware of their condition report some kind of ‘eureka’ moment when they first discovered there was a word for their unusual thoughts. For April, now an art teacher, this moment came just two years ago, after hanging her thesis project in a gallery in New York. “The song came on that I had painted the blue part of my painting to, so I blurted out, ‘See it right there!’ and pointed to the blue part of my painting,” she says. “My friend turned around and said, ‘That’s synaesthesia. Lots of people have that, you know – other artists’.”

Indeed, April is not the only synaesthete to have channeled her visions through art. Former doctor Jane McKay has always seen sound. The 67-year-old is now studying a master’s degree at Wimbledon College of Arts, in which she paints the images she sees when listening to classical music.

“Even as a child I painted poems and music, and I thought nothing of it,” she says. “I remember saying to my father that I didn’t like piano concertos, because the piano sounded so soapy compared with the orchestra. In retrospect, that was quite a synaesthetic statement.”

Jane did not hear the word synaesthesia until she was in her forties, when a psychiatrist made a comment in response to her paintings of Benjamin Britten’s music. “When I first heard the word, a lot of other things started falling into place,” Jane recalls. “There are people whose names I can never remember because their name is the wrong colour.”

Jane says she often comes across other synaesthetes when she sings in choirs. Indeed, research has shown that those with the condition tend to be the more creative types. Russian-born artist Kandinsky used his capacity to see sound and hear colour to create his abstract paintings, and Russian composer Scriabin requested that his music be performed with colours projected onto the walls.

Modern singers Lady Gaga, Pharrell Williams, Charli XCX and Kanye West have all reported music-related forms of synaesthesia. “I love music that’s black, pink, purple or red,” Charli XCX once told the BBC. “But I hate music that’s green, yellow or brown.” Lady Gaga, renowned for her ‘unusual’ performances, once described her song “poker face” as “a wall of yellow”.

Teacher Paul Harris from the Royal Academy of Music says he became interested in the condition after teaching a number of synaesthetes who see specific colours for certain notes. “I would say it’s important that people should have some kind of idea that it’s there,” he says. “It could help to explain to certain teachers why their pupils may be coming out with unusual remarks.

“They may just think it’s a slight-of-fancy or an over-egged imagination, whereas actually it’s something that’s much more scientifically understood.”

James Wannerton says it is important to remember that most synaesthetes see their condition as an advantage. “I love it because it adds something,” he says, describing his ability to taste every sound he hears. “It’s not a God-given gift, but I can look at a cup and get something extra out of it, because I get a taste as well. So I’m getting more than anybody else. And that’s fine by me. I wouldn’t change a thing.”

Professor Newell points out that this has always been the case for synaesthetes she has met. “One of the synaesthetes that I worked with recently asked me if I had synaesthesia,” she says. “When I said that I don’t, she said ‘Oh, that’s a pity!’ She actually felt sorry for me.”

The aptly named ‘I’m not a freak, I’m a synaesthete’ Facebook group is a clear indication of the need for greater public engagement with the condition. With over 2,000 members, many users say the group is the only place in which they have been able to speak openly about their condition and meet others with similar experiences.

The group mainly comprises of synaesthetes and researchers, but a number of parents also use the page as a point of reference and discussion for finding out more about their child’s mind.

Mother-of-three Shimra Starr-Englard recently shared a comment with the group: “My 8-year-old son Mo came up with the best term for people who don’t have synesthesia: ‘color-deaf’,” she wrote. Within minutes, synaesthetes across the world were commenting, agreeing and coming up with versions of their own. “That’s awesome! I will have to start using that,” they wrote. “For me, it’s more like ‘touch-blind’, or ‘light-deaf’,” said others.

In that moment, an 8-year-old boy had perfectly summed up the views of every synaesthete in the group: to them, the condition is normal. Now it is up to the rest of world to see it that way.

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