Drexel University Online - March and May

View From the Spectrum: Autism From Around the World

Four students with Asperger Syndrome from a school in in Christchurch, New Zealand have gone on to successful courses of study at colleges or universities. Another school in Beijing, PR China has developed a remarkable program emphasizing the administration of sensory integration therapy. Yet another organization in Kawagoe City, Japan houses nonverbal adults with autism, engages them in teamwork using dangerous power tools building shipping pallets, all while having them lead dignified, pleasurable, and productive lives. A newly formed parent group in Kolkata, India hosts an internationally known speaker and consultant on autism for the very first time. In South Korea, only students at the top of their class are chosen to study special education at the university level – and these educators are paid more than regular teachers.

In my travels around the world consulting and presenting on autism I sense that I have gotten somewhat of a sample of how autism is recognized, perceived, and how support is provided in different communities. Even though I have been to six out of seven continents it’s also important to realize that I have only seen a small minority of countries, hence the sample I do have may be biases. However, perhaps some of my observations regarding the countries I have visited are worth exploring.

For example, I have found that no matter how poor or desolate of resources a location may be, pockets of best practice can always be found. These pockets of best practice demonstrate that autism and the challenges it brings spans the globe. We have much to learn from all areas of the globe on how to match best practice to intervention—empowering people with autism to lead fulfilling and productive lives. On the other side of the coin, challenges of identification, intervention, and support for successful transition to adulthood continue to represent significant barriers to overcome in all areas of the world.

Incidence Rates

There seems to be a general increase in the incidence rate of autism in the countries I have visited. For example, a figure of greater than one percent seems regularly accepted in Northern Ireland as well is in the rest of the United Kingdom. Those of us in the United States are all too familiar with the revised figure of 1 in 150 promoted by the Center for Disease Control in Atlanta, Georgia. Other countries such as India, Japan, Australia, New Zealand, South Korea, etc. all seem to either report or accept similar figures. Of course there are many other countries I have yet to visit that may not have the resources to accurately assess the number of people on the autism spectrum within their borders so my sample is probably biased in a number of ways.

There are many competing theories about this relatively sudden increase ranging from environmental toxins interacting with genetic predispositions to greater community readiness, awareness, and a broadening of the accepted criteria for autism as discussed by Richard Grinker in his book Unstrange Minds and in his presentations. Others even suggest that the autistic way of being may be the next step in evolution and that those of us on the autism spectrum are perhaps “early adopters.” Like with some many things, the truth lies with additional resources and may include a number of existing theories and other possibilities we have yet to discover.

All I know is that through my grade school days I was the only person I knew of as being on the autism spectrum. Thinking back, a number of my classmates probably should have been diagnosed as having autism. However, even with including those students, it remains somewhat baffling to explain that we now have entire rooms in our public schools devoted to children on the autism spectrum. Or, the fact that within bicycling distance of my home in the Boston area, there are at least 5 private schools, exclusively for students with autism that the public schools are unable to serve.

Similarities and Differences in the Autism Community

People on the autism spectrum face the same challenges in communication, socialization, and other areas worldwide. These similar issues present difficulties for many who are not on the autism spectrum in understanding us and vice versa as we are not understanding them. Perhaps the concept “Theory of Mind” – suggesting that people on the autism spectrum have difficulty understanding the non-autistic (neurotypical) mind – cuts both ways where persons not on the spectrum also experience difficulties understanding the autistic mind. Similarly, there is a true community between those of us with autism where we share common experiences and observations about how we interpret the world we live in. This fact calls for greater efforts of people non-autistic and autistic alike to come to greater mutual understanding.

Parents of offspring on the autism spectrum are the same as well. They share deep dedication to helping their children lead as fulfilling and productive lives worldwide. Picture Exchange Communication Systems (PECS) and other visual supports adorn their homes, schools, and other areas were people with autism are found. Just like in the United States, some parents seem overwhelmed by the situation they find themselves in whereas others are driven to develop local, regional, national, and perhaps soon to be internationally known support groups. Classified as “high demand-high support” parents by Arnold Miller of the “Miller Method,” these parents eek out the most development possible from their children on the autism spectrum and their organizations. Lisa Ackerman, executive director of Talk About Cure Autism (TACA), is such an example and has counterparts in India, Northern Ireland, Japan, and in many other countries.

The people devoted to the education of children with autism also have great similarities worldwide. As I travel about the world it seems that these star teachers and therapist have many similarities including:

  • A mission to achieve intensive interaction. These educators intuitively understand how their charges with autism interactive and find ways to draw them out. This characteristic is found both across different methodologies as well as in different areas of the world.
  • Often, they have been touched with autism in some significant way. Perhaps a family member or close friend is on the autism spectrum. It often seems that these star educators have a touch of being on the autism spectrum themselves, which engenders a greater understanding of how their students perceive the world.
  • Continual thirst for knowledge. These are educators scouring websites, books, and where possible attending conferences to ever increase their knowledge base on helping their students with autism lead fulfilling and productive lives.

The differences I have seen in people with deep involvement mostly pertain to language, accents, and support they receive from their government. While the difference in language and accents can be overcome, government assistance often presents a far greater challenge. For example, in Northern Ireland, students with disabilities end their education at age 16 whereas regular education students finished their compulsory school days at age 18 or 19. Given that autism is a developmental delay, meaning it takes longer to learn, it would only make sense that children on the autism spectrum should be allowed to remain in school longer then their regular education peers like they do in the United States and some other countries. As I write this article, I will be meeting with an official of the government of Northern Ireland later today to bring up this very point.

Of course, services and support in the United States is not a panacea either. As mentioned in the introduction, unlike in South Korea where special educators earn higher salaries and receive additional needed support from the government to do their jobs then their regular education counterparts, these dedicated professionals in the United States are often paid less and receive fewer supports then regular education teachers. As suggested above, there is much to learn from all people of the world in supporting people on the autism spectrum.

Summary

With electronic means of communication and the ease of travel across time zones, the world continues to become a smaller and smaller place. For example, this is the second time in about 5 weeks that I have circumnavigated the globe consulting on, presenting, and holding workshops related to the autism spectrum. There is much autism around and given that similarities rather than differences characterize the autism community, there is every reason for greater collaboration as we work towards our goal of empowering those with autism to a future of fulfillment, productivity, and wellbeing.

Stephen M. Shore, EdD is Executive Director of Autism Spectrum Disorder Consulting. He also serves on the Board of Directors for the Autism Society of America and serves on the Board of Directors for the Asperger’s Association of New England.

To learn more, please visit his website at www.autismasperger.net.

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