They are not estranged, and his vision is fine, but unless he meets her in a familiar context he will not recognise her face, even though he has seen it most days for the last 25 years of his life. Howard has prosopagnosia, meaning that he cannot store information about facial appearances. The only way he can learn what somebody looks like is through association; he can recognise his daughter at home because he expects to see her, and clues like clothes, voice and height make her different to his wife and other children. If he sees her on the street, she could be any young, unknown woman.

Even with this obvious difference in his social functioning, his condition was not diagnosed until the age of 50.

The Invisible Disorder

Developmental prosopagnosia is often a symptom of Asperger’s Syndrome (AS).

AS is a relatively new term; it was only officially recognised about 14 years ago.

Since then, it has become widely discussed – even Grange Hill involves a character called Martin who has AS.

There are, however, still common misconceptions about the disorder. Superficially, AS people are entirely normal as it only affects social functioning.

Severity varies greatly, and it can be manifested in many different ways, from inability to recognise other people’s emotions to difficulty organising everyday life.

Many learn to hide their problems well, making it hard to diagnose.

Breaking Point

Although many AS sufferers always feel they are ‘different’, it is sometimes not until they reach university that they experience the difficulties that lead to diagnosis.

AS people all have average or above intelligence, meaning they go to university with good prospects, but can find it a devastating experience.

Doreen Paisley runs Rookery House, a Priory educational unit for 18-25 year olds with AS.

She says: “We get a lot of referrals of young adults who appeared to be successful at school, but when they went to University they just couldn’t cope. Sometimes I think: ‘Is there any way to get these people back?’ They come to us so mentally fragile and broken. We see the damage that it can do to them when they think that they have failed.”

The transition to university can present unforeseen traumas, both socially and educationally. The sudden lack of learning structure can leave AS students unable to organise their time and they may find new methods of learning difficult to understand.

As they fall behind academically, anxiety can cause them to neglect daily routines.

“They don’t attach importance to personal hygiene and appearance,” says Mrs Paisley. “They need help to realise that they have to do things like take regular showers and dress neatly. When the pressures of work get to them they prefer to let these things suffer damage other than their academia, but when they stop acting normally they find it harder to fit in socially.”

Left Out

The social whirlwind that is stereotyped as the essence of university can take its toll on students with AS.

30-year-old Sim describes how going to a pub with acquaintances can be terrifying: “You want to talk, but it’s like there are no words in your head. You can’t think of any questions to ask and you have no idea what would be the appropriate thing to say. You realise that you are tuning out of the conversation. You’re giggling and grinning and raising your eyebrows and you’ve got no idea what is going on anymore.”

Sim dropped out of University in her second year because the emphasis on social life demoralised her: “People were always saying that the social side of things was more important than the academic. That upset me a lot and made me feel like a failure because even though I did well on my course I couldn’t make any progress socially at all.”

Her inability to fit in depressed her until a trip to the career’s service made her believe that she had no place at university: “I left knowing that it didn’t matter how clever I was, there was not a single degree level job on this planet that I could have done with my social and communication skills as they were then.”

Sim was not diagnosed with Asperger’s until she was 25, years after she left education. If she had been diagnosed earlier she may have found greater support, but some worry that early diagnosis could lead a child to be overprotected.

Sim says: “Maybe it’s like learning to walk a tight rope. You can’t learn by watching from the ground, you have to actually get up there. Having said that, you should always have a safety net because falling is part of learning. The thing I regret the most is that I didn’t have a safety net. I got hurt a few times.”

The Safety Net

The safety net is being constructed, but there are still holes in it.

Currently, students who cannot cope with the pressures of university drop out because of a lack of awareness about AS.

Cardiff’s Student Support service keeps track of students who declare that they have AS when they enter university. This has been running for about four years, and includes providing library buddies, note-takers, and peer mentors who help them integrate.

Disability and Dyslexia Advisor, Delyth Morgan, says: “Most who are diagnosed before arrival don’t seem to encounter great problems. If someone is experiencing difficulties in organisation or integration, a tutor or friend might advise them to come to us.”

However, students are still falling through the net. Some cases end in a break down, and a referral to a facility like Rookery House.

The 30 occupants of the house are provided with social and life skills classes, teaching them how to look after themselves and reintegrate into education.

Although this facility is an important medium, the distance from campus maintains a barrier.

“Not all universities have a Connections adviser who understands AS to provide on-campus help, so our students are accompanied to lectures by a support worker,” Mrs Paisley says. “Some get embarrassed because it shows they need help, and they think their peers will reject them.”

Future Understanding

Greater awareness of AS could stop it from being seen as a disabling difference.

Simon Coles, principal of Farleigh Further Education College, a section of Swindon College for AS students, thinks that eventually AS will be looked at in a similar way to dyslexia.

“A few decades ago, people with dyslexia were sent to special schools, but now a lot of resources go towards schooling dyslexic people in mainstream education. AS is similar in that it doesn’t prevent people learning, but they need to learn in a different way. With adequate support AS students can learn effectively in a fully integrated educational environment.”

Universities can still do more to raise awareness that support is available, such as targeting advertising by handing out leaflets for organisational help with essay questions or putting up posters for social groups in halls.

“If people knew help was available, perhaps we could catch them before they fall,” Paisley says. “Students who start to struggle but do not understand why, could get help before they have to face the feeling of failure.”

Unconventional behaviour still carries heavy stigma. Sim found that she was ostracised for locking her bedroom door: “I guess they thought I was being unfriendly, but it took a lot out of me being social with them and I needed time alone to recharge my batteries.”

Sim would have liked to stay in the same room in halls for her entire course, and others may need adapted living conditions. A support worker based in halls of residences could help them to maintain daily routines and defuse bullying or interaction problems.

Greater awareness among students and lecturers could mean AS is soon as widely understood as dyslexia is now. As attitudes change, there is hope that Asperger’s may be more widely discussed and become a term that helps young people to access the resources and education that they deserve.

  • All names have been changed in the interest of confidentiality.

Asperger’s Syndrome

  • Austrian Paediatrician Hans Asperger wrote a paper about a group of children he called ‘little professors’ because they were clever, but did not interact normally. Dr. Lorna Wing coined the term Asperger’s Syndrome in the eighties, but it did not become a distinct diagnosis until 1992.
  • AS is an Autistic Spectrum disorder, meaning that it is related to autism but is not as severe.
  • Just under 1% of the UK population is believed to have Asperger’s Syndrome, although many more may go undiagnosed.
  • AS is believed to be a neurological disorder that could be genetic, as patients often display abnormalities in parts of the brain that deal with social functioning.
  • However, research into the causes of the syndrome is ongoing, and certain social factors may contribute.

Symptoms of Asperger’s Syndrome

  • Difficulty understanding the gestures, facial expressions and displays of emotions of others, and seeming detached or lacking in empathy.
  • Displays of nervousness such as hand flapping or reluctance to make eye contact.
  • Difficulty choosing topics to talk about, leading to shyness or obsessive conversation about one topic.
  • Obsessional behaviours such as repeated routines and distress at the disruption of routine.
  • Attachment to unusual objects. “When she was four years old, Sim cuddled a green wheelbarrow instead of a teddy, because she liked the smell of new plastic.”
  • Inability to understand people’s motivation for actions, andsusceptibility to take things such as sarcasm literally.
  • Problems with sequencing tasks, planning ahead and organising everyday activities.

For further information, log on to www.aspergerinformation.net or www.nas.org.uk