Asperger Disorder.
Critical issues in Asperger disorder after 10 years - The Asperger Difference- an inside out perspective.
Katharine Annear B.App.Sc.(DisStud)
This article is written by a 30-year-old woman with the Asperger difference, it aims to examine key themes emerging in today's Asperger population. It is designed to be accessible to supporters of individual's with Asperger's but is primarily written for the adolescent and adult insider.
Notes:
Neurotypical is now a widely accepted term used to describe the 'normal population'
For the Insider is a series of questions designed to provoke thought, self reflection and possibly understanding in those with Asperger's.
The Asperger Difference, different not disordered is how some people like to refer to themselves.
Introduction
There is an ever-increasing population of those identifying or being identified with Asperger disorder. A stronger online presence and growing community awareness mean that Asperger disorder is now a more public disorder open to interpretation by many. There are number of distinct themes emerging from this population that from an insider's point of view warrant discussion and exploration.
Asperger disorder is a pervasive developmental disorder on the autism spectrum characterised by social deficits, and the presence of idiosyncratic interests (Henderson, 2001). Individuals with the disorder may also exhibit impaired verbal and nonverbal communication, motor clumsiness, sensory sensitivity, theory of mind deficits and emotional difficulties (Attwood, 1998, Barnhill, 2001). It must be noted though that within the research no universal agreement seems to exist on the characteristics of AS.
Asperger disorder has its DSM criteria (DSM-IV, APA, 1994) 10th birthday this year, though it was first described by Hans Asperger in 1944. The increased spotlight the disorder has seen estimations of prevalence rise as high as 6% of the population (Henderson, 2001). It is estimated that there are more males than females with the disorder however it is speculated that many females may go undiagnosed because of different social expectations and abilities (Attwood 1999).
Facts and figures estimations and speculations aside, 10 years into Asperger disorder, what does it mean to those who experience it? What themes are emerging from the Asperger 'community'?
A Community?
Firstly, is there an Asperger community, do people have sense of belonging to a distinct group of people? Some say yes and say yes in droves when signing up to online communities and fronting up to local support groups.
'I feel better with my own kind, I would be lost without a weekly chance to be with my own kind' says Ben, 22, a support group member.
There is much talk within these support groups of creating a community that is ideal for people with Asperger's, a community that nurtures talent and respects different learning styles and is free from the discrimination, trappings and confusion of the Neurotypical world. Many with Asperger's say there is a distinct Asperger (and Autistic) culture that bears resemblance to the wider disability culture movement (Dekker ,1999). From within this movement there are people willing to own a culture with pride, to denounce the concept Asperger disorder as a disability and put it forward as a difference to be celebrated. However others say they feel just as alone talking to other people with Asperger's as they do with the typical population.
'Why should I feel connected when I have a disorder that stops me from connecting with people, whoever they are.' Says Carmen, 34, talking in an online support group.
For the Insider
What is your experience of Asperger community or culture?
Have you experienced support from others?
Where is the local support?
Can you connect with the local support?
Why not start a community?
Have you tried an online community?
If you feel alone all the time and are worried by this, could it be depression?
Self-Advocacy
There is a growing self-advocacy movement amongst those with the Asperger difference and as with any self-advocacy movement it is born of a need to meet needs that are not being met, to ensure that individual voices are heard and rights are enjoyed by all. Early examples of the self-advocacy of individuals on the Autism spectrum include Temple Grandin, Donna Williams and Gunilla Gerland (Dekker, 1999). Whilst these are very public and well known examples there are many others who now self advocate on a daily basis to have their basic needs met:
'I have to go into Social Security and tell them what it is like to be me because they just don't know what Asperger's is like, how hard it can be sometimes... I think if I didn't go in there they wouldn't pay me benefits because they aren't aware of the difficulties Asperger's poses... and hopefully the next time they get someone like me they'll know what it's like' Savana, 29, a self-advocate.
And despite some success with self-advocacy there a many who are still lost in our systems and lacking the support they need:
'When I was cut off benefits, they said I was too able, I don't even know where to get help.... I know this is about politics as well, I don't like the prime minister, he doesn't know anything about Asperger's.' Mark, 27.
If self-advocacy is to continue to benefit all with Asperger's there needs to be a focus on a local as well as a global face to Asperger's. Local self-advocacy networks can support people in having their basic needs met as well as being a united front for tackling systemic issues.
For the Insider
What can I do to self-advocate?
Are there any self-advocacy groups in my area?
Is there a local Autism society or organisation?
Are we represented on the board or in the management of that society or organisation?
What can I do to help others self-advocate?
Media Portrayal
Asperger's appears in the news around the world daily, a quick glance at these stories and you will see that a lot of them contain despair and difficulty as well as the odd speculation that Einstein or Michelangelo had Asperger disorder. A recent article (Ferguson, 2004), also stated that the American nation was suffering from Asperger Syndrome, a now 'fashionable affliction'. On the whole though people with Asperger's are portrayed as sufferers or as the cause of the suffering of others.
Whilst there is difficulty in living with Asperger disorder people's lives do run the gamut of emotions that constitute 'normal' including happiness, joy and love. People do experience life, as neurotypicals know it, from the mundane to the extreme, from companionship to solitude, from hardship to triumph. There is little of this reality in the media and people with Asperger’s certainly don't feel fashionable. The 'Asperger story' in the international and local media needs to be rewritten to include the breadth of the Aspergian experience as it relates to lives of all community members.
For the Insider
How do you feel about how Asperger's is portrayed in the media?
Would you like to rewrite the Asperger stories you read?
What is your story?
Can you rewrite the 'Asperger's story' through your local media?
A Cure
The Asperger difference is difficult to live with, especially in a world designed for a neurotypical population. People with Asperger’s experience ongoing social and learning difficulties, problems interpreting their environment and problems expressing themselves to others (Holliday-Wiley, 1999, Jackson, 2002, Lawson, 2001). Experiencing these difficulties often leads to anxiety, depression and a need for strict routine(Lawson, 2001). But many with the Asperger difference achieve comfortable and successful states of being, quality of life, and have an extraordinary capacity for self-reflection and understanding of the human condition(Holliday-Wiley, 1999, Jackson, 2002, Lawson, 2001). As one supporter states:
'People with Asperger's hold a magnifying glass to humanity.... they magnify human behaviour.... to some they represent a puzzle but in reality they just might hold the key.'
To some a cure for Asperger's represents freedom from difficulty and pain, freedom from the challenge of 'challenging' behaviour, a chance for 'normality' or success for themselves or the people they support.
To others a cure represents the taking away of what is an essential part of them or the person they love; there is nothing else they know but life with Asperger's. The mere thought of a cure is an insult to their existence, for to eradicate the Asperger difference would essentially eradicate them.
As communities we accommodate and support people on a daily basis without even realising it. Where would we be without eyeglasses for instance? Understanding the Asperger difference may not be about finding a cure but about finding ways for everyone to live successfully in the one community. There will be no one way to live with Asperger's, just as there is not only one way to live life.
For the Insider
If someone offered you a cure for Asperger's would you take it?
What are some of the positive aspects of the Asperger difference?
What can you do to live well with Asperger's?
What accommodations, if any, do you need at home, at school, in the work place, in the community? Can you communicate these?
Who are your supporters?
Self-diagnosis
Whilst it is necessary to have an official Asperger diagnosis to access many local services and support networks a recent survey of online support groups showed that almost 50% of people in online support groups were self diagnosed and approximately 70% of those did not want an official diagnosis. We may ask the question why people would want to belong to a group of beings who are so frequently misunderstood and marginalised in society. Perhaps they too have similar experiences. But how does one ascertain just how similar these experiences are. And what if these people were to represent Aspergians when they truly do not have the Asperger difference. Does the answer lie with the idea that there exists this difference without having to name it.
For the Insider
What does this mean for the Asperger community?
Who are these people that identify with us?
Can we open up a dialogue with these ‘members’ of our community?
In ten years the Asperger community has come long way. It is a dynamic entity that is changing and growing with newly diagnosed people reaching out every day and asking questions that will define themselves and their communities in relation to the concept of the Asperger Difference. We will continue to define and redefine ourselves for many years to come. There is strength to be found in unity, our concept of unity may be very different to that of a neurotypical social world, never the less we are unified by the experience of the Asperger Difference.
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