In Another World
Over the last year one of the most common questions that I have been asked whether by email or at Conferences has been regarding a condition which straddles the boundary between Mental Health and Learning Disability. Originally known as Autistic Personality Disorder it is now known as Asperger‘s Syndrome and is seen as part of the family of Autistic Spectrum Disorders.
In my area of work the Autistic Spectrum Disorders were commonly seen as a Learning Disability and not a Mental Health issue and as I was part of the Mental Health Team my only involvement was when there was a need to make assessments under the Mental Health Act. I had heard the term Asperger’s mentioned but I did not really take any notice of the condition until a family member was given the diagnosis when they underwent a comprehensive re-assessment of their condition. They had been known to the statutory services for decades but an impasse had been reached in their support and provision. After significant pressure and advocacy, the professionals agreed to review everything and as a result a new dual diagnosis was made which included Asperger’s Syndrome. This was like a light being switched on when we read the assessment and the details of the condition. How could it have been missed so long? All the different quirky unexplained aspects of this family member fitted suddenly into place.
A person with Asperger’s may be misunderstood, often defined as naughty when a child or antisocial as an adult, an embarrassment to parents, not conforming to social etiquette, saying the wrong thing, taking what is said literally, being obsessive, often clumsy, self absorbed, isolated and yet not bothered, often bright but socially inept, prone to tantrums, oversensitive to touch, noise, smells, repetitive in words and actions, in need of structure and boundaries, and so much more. As a person with Asperger’s cannot understand the world around them with its complex social relationships and expectations, they face daily confusion and suffer extreme anxiety.
It is like they are in another world where there is some overlap and at times clash of worlds but at other times a world within a world. Their perception of what is said, facial expressions, body language and social expectations are so different that the outsider, ignorant of the different perception, is left bewildered by the response and attitude that they give. They can be seen as rude when not meaning to be. If cornered they can respond with anxiety or even aggression but so would many people if put in their situation.
Yet they are often gifted, intelligent, and have great potential. The challenge is to unleash the potential and to understand the parameters in which they will thrive. This will need understanding by all those around them, their family, school, and Church. They often need to be given clear concise instructions, one at a time rather than being crowded by a multitude of instructions. They themselves need to be helped to understand why they may feel different to others and why there seem to be different worlds. All of this may not fully eliminate the two world division but at least it can enable some integration and minimise clashes.
The book “Freaks, Geeks and Asperger Syndrome” by Luke Jackson is a guide to adolescence and Asperger’s written by someone who knows exactly what it is like as he has the Syndrome himself, as do other members of his family – it is an insider’s view to give insight of one world to members of another.
Since the time our family member was diagnosed I have developed an interest in Asperger’s and the Autistic Spectrum Disorders. Premier Lifeline was an associate organisation in the Autism Awareness Year a number of years ago and I featured Asperger’s on several occasions on Lifeline Live on Premier Radio.
In trying to understand Asperger’s there is one book that seems completely absurd in its title but is a portrayal of some of the key aspects experienced or demonstrated by a child with Asperger’s using pictures and images of cats. “All Cats Have Asperger’s Syndrome” by Kathy Hoopmann is one of the few books that got people talking to the extent that everywhere I went I heard it mentioned, soon after its release. From Church to work the unusual approach of the book caught people’s imagination and it got them talking about Asperger’s Syndrome. It does not pretend to be a detailed analysis of the condition nor a diagnostic dictionary. If you want this “The Complete Guide to Asperger’s Syndrome” by Tony Attwood will give you all the details you need. “All Cats..” is designed to make you think, challenge you, change the way you see a person, reconsider how you respond - all by using a limited number of words linked to images of cats. It helps on a very basic level to inform those who are close to someone with Asperger’s of some of the aspects of the world in which they live, their strengths and weaknesses.
As with many conditions often associated with childhood, this is one which does not just go away One can learn to live with Asperger’s and maximise potential, but the two worlds aspect of it can be challenging in work life and personal life. There can be severe complications when a person with Asperger’s marries someone in the “other” world, especially if there is no understanding or as is often the case the Asperger’s is undiagnosed. For this reason material is being written to help people respond to situations like this, and an example of this is “Counselling for Asperger Couples” by Barrie Thompson which looks at how to enable the two worlds to communicate and work together in marriage.
Each person is different, each has their own specific needs, everyone needs to be responded to individually, and unless this is recognised then society and its functions including the Church can wrongly label what is said or done (or not said and not done) as having a completely different basis to the one that is commonly assumed.
Jonathan Clark, 31/01/2010