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Asperger Syndrome: What Is It And Why Is It So Hard To Diagnose?

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With the revelation that Susan Boyle has Asperger Syndrome, the question for many is why it took so long for her condition to be diagnosed.

The singer said it was a 'relief' to finally understand what her condition was, but when it comes to Asperger's, it's not unusual for it to be misdiagnosed in adults, and it's especially tricky to correctly diagnose it in women, says Carol Povey, director of The Centre For Autism, part of the National Autistic Society.

What is Asperger's? It's part of the autism spectrum, says Carol, "but is used to describe the more able group of people who may have high IQs and good language ability but who still struggle with relating to people."

susan boyle

Dr Paul Zollinger-Read, chief medical officer for Bupa and HuffPost UK blogger says: "Unfortunately, there is no cure for Asperger’s syndrome, therefore, it’s a lifelong disability. It affects how you make sense of the world, understand and interpret information, and relate to other people. It affects people in many different ways and can range from mild to severe. This is why it is often referred to as a 'spectrum disorder'."

But how does the condition manifest?

Talking to HuffPost UK Lifestyle, Povey added: "They have trouble with interpersonal skills, still struggle to make sense of the world around them and because of that, they have high levels of stress and anxiety brought about because of the difficulties of dealing in a non-autism friendly world."

Boyle said in an interview with The Observer: "I would say I have relationship difficulties, communicative difficulties, which lead to a lot of frustration. If people were a bit more patient, that would help."

WHAT ARE THE SIGNS OF ASPERGER'S?
  • have difficulty understanding gestures, facial expressions or tone of voice
  • have difficulty knowing when to start or end a conversation and choosing topics to talk about
  • use complex words and phrases but may not fully understand what they mean
  • be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm. For example, a person with Asperger syndrome may be confused by the phrase 'That's cool' when people use it to say something is good.

"Asperger's doesn't define me. It's a condition that I have to live with and work through, but I feel more relaxed about myself. People will have a much greater understanding of who I am and why I do the things I do."

Certainly the advice about how to deal with people who have Asperger's is to talk in clear, concise sentences.

When Povey talks about a 'non-autism friendly world', she refers to two things. The first is that despite our increasing awareness of autism, there are still a lot of myths and second, that more needs to be done to accommodate such people.

With regards to the first point, she says: "One myth that has been highlighted is that it is a childhood condition. Of course it isn’t – children with autism grow up into adults – they struggle and don’t have a proper diagnosis. What doctors may be looking at is the depression or a personality disorder that occurs as a result of not being able to cope with the world, not realising that the underlying condition may be Asperger's."

Small steps that could be taken is for more support within families for children and adults who have Asperger's as well as within the work place. "Only 15% of people with Asperger's have employment," Povey adds, "but far more than that can contribute and lead a full life. All it takes is for the person interviewing to make a slight adjustment. Isolated individuals may need more coaxing and be supported to socialise and link up with others."

But why is it so notoriously hard to diagnose?

Dr Zollinger-Read says: "Unlike autism, which is normally spotted in children around 18 to 30 months old, Asperger's syndrome is diagnosed later, usually when the child starts school. But as we’ve seen with Susan Boyle, it can sometimes be diagnosed later in life. This is because it can be a ‘hidden disability’. By this I mean people with Asperger’s learn to hide or cover up their associated problems and therefore people can’t tell that they have the condition."

Older adults can be particularly difficult, says Povey because "the diagnosis is dependent on looking at someone's early developmental history – for someone in their early 50s or 60s, they may not have family members around to look at early milestones."

For women, it can be even harder. "Women present autism in a different way - they are better at masking the more obvious autism characteristics and are good at copying the way other people act. The traits aren't quite as obvious," Povey says.

Dr Zollinger-Read concludes: "Although there is no cure, with the right support and treatment plan, those with Asperger’s syndrome can lead independent, normal lives. Look at Susan Boyle’s success for a start! Treatment is usually a combination of speech, physical, or occupational therapy, social skills therapy and behavioural modification. But this will differ for each person depending on how it affects you and the degree of severity.”

For more information about Asperger Syndrome, visit The National Autistic Society website.

Sources:

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