The Huffington Post UK | By Poorna Bell Posted: 10/12/2013 09:41 GMT | Updated: 16/01/2014 08:47 GMT
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."
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 Societywebsite.
Full article, click link below:
http://www.huffingtonpost.co.uk/2013/12/10/asperger-syndrome-susan-boyle-diagnosis_n_4413065.html
Also a blog letter in Huffington Post, click link below:
http://www.huffingtonpost.co.uk/jo-worgan-/susan-boyle_b_4411975.html
Follow
In the early hours of Sunday morning I lay awake, having been woken up my youngest little boy. I groped for my IPhone to scan through the latest news stories. One story in particular caught my eye, the 'revelation' in the online Guardian newspaper about Susan Boyle and how she has finally gained a diagnosis of Asperger's Syndrome. I have to say though that I was not particularly surprised.
This poor woman, I thought, she has lived through 52 years of doubt and misdiagnosis, now she can finally get the help and support that she needs. What must it be like to go through life not being understood or not even understanding yourself? But while reading the article I found myself thinking about the thousands of other women out there who are also misdiagnosed or who cannot gain a diagnosis of Autism. Susan states that she had to go and seek a diagnosis for herself, nobody helped her.
"I went to seek a diagnosis from a Scottish specialist...Nobody told me to. I thought I had a more serious illness and couldn't function properly." The Guardian
Now is the time for the Government to listen and act. There needs to be better diagnostic criteria for women and girls with Asperger's Syndrome, the system at the moment is failing young women and girls.
Autism campaigner and advocate Monique Blakemore who has Asperger's Syndrome is at present campaigning on this matter. She has recently submitted a survey which contains the opinions of 100 women with Asperger's Syndrome entitled 'Asperger Women UK, Autism Strategy Review', to the Department of Education to use in its review of the Adult Autism Strategy. Monique was not diagnosed with Asperger's Syndrome until she was 39.
"My own diagnosis was at 39 years and only when I began to research the feminine expressions of autism could I begin to relate to Asperger."
Her Review also contains startling facts about the women who are on the Autistic spectrum. "Only 63.49% were able to obtain a diagnosis through the NHS and 27.55% receive no support and feel no one understands their family and needs."
Monique is also going to be discussing Susan Boyle and how women are referred for diagnosis ten times less than males on BBC Manchester this week.
Olley Edwards, another female Autism campaigner and author/film maker is also campaigning for better diagnostic criteria; she herself has undiagnosed Asperger's and has daughters who are on the Autistic Spectrum. She recently set up an online petition 'Awareness of Asperger's Symptoms in Females', where she states that there needs to be female only criteria for diagnosis of young women. At the moment for every five males that are supported with Asperger's Syndrome, four females remain unsupported.
I now think that there has never been a better time than the present to raise these issues. Susan Boyle by talking openly about her diagnosis and the length of time that it has taken to eventually be diagnosed have most certainly opened the floodgates for other women to come forwards and share their experiences as well as petitioning and raising awareness for better diagnostic criteria for women and girls.
Surely change needs to happen.
