Monday, September 8, 2008

Autism and ASA by Brett Stand

I am proud to post this text by Brett Stand about Autism. Brett Stand is the Autism Society of America (ASA) Second Life president.

Autism is a severe developmental disability which is usually diagnosed around the age of three; although children are being increasingly diagnosed at a younger age. Autism results from a neurological disorder which interferes with brain development; primarily in the parts of the brain that control perception, verbal communication and social interaction.

However, the situation is even more complex than that. Autism is what's considered a spectrum disorder. In fact, an acronym often used to identify autism is ASD ... for Autism Spectrum Disorder. And what that means is that there are ASD individuals spread out over a broad spectrum: from individuals profoundly affected with little or no independent life skills and extremely limited communication ability to those who are seemingly "mildly" affected and function more or less effectively in society. This other segment may have jobs, sometimes even careers requiring advanced education, such as engineering. Some go on to get married and raise families.

The higher end of the spectrum is often referred to as Asperger’s Syndrome, a higher functioning form of autism which was first identified by Dr Hans Asperger. Many people with this type of autism present as being "mildly" effected by autism and may function within society with various degrees of success. You will note that I place the term "mildly" within quotes. I do this to indicate that no form of autism should be considered mild and in fact the condition has a profound impact on every individual on the spectrum.

Some experts consider Asperger’s Syndrome to be so significantly different from other forms of autism that it may in fact be a syndrome separate from autism and may be the result of completely different causes. So the term autism is a very broad catch term for a very complex syndrome. Each individual on the autism spectrum is unique in his or her own way. We have a saying in the autism community: “If you’ve met one person with autism … you’ve met one person with autism.”

Unfortunately what causes autism is still a matter of scientific mystery, and quite frankly controversy. Experts have many theories, but no real conclusive understanding of what causes autism. It is generally agreed there is a genetic component to autism; witness the families in which autism appears to run through generations and involve siblings. While it appears that some children are born with a susceptibility to autism, researchers have not yet identified the gene(s) which causes autism to develop in a particular child.

There is also evidence that there are environmental factors, such as the chemicals we encounter in daily living and in the medications given to children. We live in an age where many chemicals, for example the chemicals used in agricultural pesticides, are more prevalent today than they were in previous generations.

It is interesting to note that because of the wide spectrum nature of the disorder, some researchers feel there may actually be different causes of autism which result in different presentations of autism.

I joined the real life Autism Society of America (ASA) after my son was diagnosed with autism. Being a typical dad I wanted to "fix" what was wrong with my son. I learned later this is a very common reaction on the part of fathers. We are accustomed to fixing things when they are broken. So we incorrectly, but well meaning, believe this approach also applies to our children.

Not too long ago I read an article about Second Life in a local newspaper. It made me curious so I checked it out. I was completely overwhelmed and totally unprepared for what I found in SL. When I entered SL I was naturally curious about autism groups in SL. So I searched under autism and found many fine groups already involved in providing support to folks in SL. Because I have been involved with ASA in RL for so long, and have held various leadership positions, I am very familiar with the resources that ASA can offer. I thought it was a natural response to try to bring those resources into SL.

To date I have been pleasantly surprised to discover that ASA's mission and purpose resonates with so many people in SL. The combination of ASA's grass roots structure and its long history of providing support to families like mine make it an extremely viable vehicle for delivering that same support here in SL. I think the ASA can make a real difference in people’s lives and provide much needed support.

It wasn’t that long ago that documented cases of autism occurred at the rate of 1 in 10,000 births. The prevalence of autism has grown so dramatically that today the incidence rate is 1 in 150 births. What that means in very concrete terms is that if you don't know someone with autism today … you will tomorrow.

These numbers are staggering … frightening actually. Especially since we don't even know what causes autism. Autism is the fastest growing developmental disability, growing at the rate of 10 – 17% annually. And it is estimated that 1 to 1.5 million Americans have some form of autism today. If this growth rate is continues unabated, this number could very easily double within the next decade.

One of the interesting aspects of ASA-SL is the number of people on the spectrum in SL. To date the numbers I have encountered have been relatively low, compared to the numbers I presume are actually active in SL. But that is most likely a function of getting the word out, and is quite frankly a situation we hope to remedy. That is, although autism support groups have been around for decades, historically they primarily existed to support families with ASD children; and predominantly young children at that. The autism community as a whole has not done a very good job of supporting adults with autism. There are a number of reasons for this phenomenon ... some good and some not so good.

Regarding what we know about people with autism in SL, that is a very interesting situation. The nature of SL is that many of the challenges found in social interaction are simply eliminated or at least minimized in this environment. For example, the issues of eye contact, body language, verbal communication processing, all of which may present challenges for people on the autism spectrum, are all essentially eliminated in favor of a semi-anonymous environment in which users can manage their interaction in a manner more comfortable for them. And if the interaction becomes too stressful, it is a simple matter to TP out of the situation or even log off. So in many ways SL is the ideal environment for people with high functioning autism (HFA) or Asperger’s Syndrome.

To anyone who feels the United States is populated by selfish, self-centered and apathetic people, I would say get involved in the world of non-profit work, especially in the health fields. There are literally thousands of people who give selflessly of their time, energy and resources to help their communities. I am truly honored and humbled to be able to associate with these amazing people. It is a world one can not imagine unless you have actually been involved with it as I have.

I would like to express how humbled I am to have the experience and the opportunity to work with so many generous and selfless people in SL. There are many worthy non-profit organizations in both RL and SL and ASA is only one of them. All the non-profit organizations perform vital functions that so many people rely on just to get through their daily lives. I am truly honored and quite frankly overwhelmed by the response that ASA has received in SL. The generosity of people and their willingness ... in fact, their desire... to get involved and make a real difference in their community is something that never fails to amaze me. I know why I am involved with autism ... because of my son. But there are countless others who choose to get involved and for the simple reason that they want to share their resources, their talents and quite frankly their desire to serve a higher purpose by helping those who need our compassion. It is impossible to exaggerate my admiration for the people who roll up their sleeves and pitch in when they are needed.

Source: Brett Stand ASA Second Life president

No comments: