May is Mental Health Month and today I welcome guest *Stephen Shore. Stephen has been traveling internationally lecturing about autism and education most recently to Russia and Morocco. He also does very impactful work with autism and music.
What differences do you see in how autism is perceived internationally vs. here in the US?
While I only know from the 34 countries I have visited for autism-related purposes thus far, I find the differences in how autism is perceived to be as diverse as the autism spectrum itself. Ranging from autism being almost a household word to there being no awareness at all but I am encouraged by two factors.
1. A growing number of countries where educators, doctors, family members, and people with autism understanding that supports are needed; they are reaching out to people such as myself and to others for guidance.
2. Just about everywhere I go – even in the poorest and must desolate places – there is almost always a small collection of (usually parents) who assemble what is often referred to as a “center” for their children and others on the autism spectrum. The people running this “center” seem to get their information from the Internet and/or perhaps by sending a scout out to conferences. Then by using plywood, plastic, and duct tape they cobble together an impressive place for their children. Some of these centers end up growing into full-scale schools.
What they all have in common is that the people involved in the organization intuitively understand how to meet the needs of individuals with autism.
Countries also seem to go through a sort of developmental process to help individuals -- the individuals who are most in need of help are usually children who are significantly impacted by autism and are nonverbal often with other severe issues. As knowledge and resources increase locally, then others on the spectrum who are more verbal and high functioning for example or adults begin to receive supports. This situation is most aptly stated by a parent in China who I asked about support for those with Asperger’s and adults. She honestly stated, “We know that there are many with Asperger’s Syndrome and adults who need help as well. But for right now, it’s all we can do to provide an education for individuals with autism who are most affected.”
What does it feel like to be an Autism Ambassador?
Being an Autism Ambassador is a great honor and allows me to fulfill my mission of combining my personal, practical, and academic experiences with autism to help those on the autism spectrum lead fulfilling and productive lives to the greatest extent possible.
Yet, at the same time being a representative of the autism community is a huge and humbling responsibility. While I can’t claim to represent all people with autism, I do what I can to make sure people in all areas of the spectrum are recognized, receive needed supports to enable us to lead fulfilling and productive lives.
Tell us about the best part of your trip to Russia? How about Morocco?
The best part of traveling to Russia was seeing so much eagerness to learn about autism and how to support those on the autism spectrum. Organizations such as SolNechnymir.ru founded by Igor Spitsberg – now on the council for the General Assembly of Autism Europe – are examples of great work being done in other countries. And… like with so many organizations… Igor is a parent of a child with autism. Perspectiva, a Russian nongovernment organization (NGO), is another example of a great, national organization that is doing a lot of good work for people with autism and other disabilities.
Similar to Russia and other countries I have visited, Moroccans are warm, friendly, and know there’s a lot of work to be done. They too are reaching out for help. Soumia Amrani is spearheading much good work in autism. For example, she was key in organizing the First International Scientific Conference on Autism in Rabat, the capital of Morocco. And like so many who are making real change in the lives of people on the autism spectrum – she is a parent of a child on the autism spectrum. On another note, the country is rich in great smells from all the spices and incense. The food is just great!
In both countries (and many others as well) the seeds of awareness are growing and creating a stronger desire to get those with autism and other disabilities out of their shut-in situations at home (due to stigma and lack of understanding) and providing the free and appropriate public education that should be the right of all individuals.
Your work with music is fascinating – can you share some details on why you think music is so powerful to those on the autism spectrum? And how do you think music or other interests can contribute positively to our well-being and mental health for all of us?
Music was a large part of my “home-based early intervention” that my parents implemented at a time when the concept of early intervention did not even exist. In my work giving music lessons to children on the autism spectrum, my sense is that whatever scrambles the speech centers of the brain for individuals on the autism spectrum leaves the music ones intact. My students range from all over the autism spectrum – from significantly affected and nonverbal to those who talk too much! Likewise, the abilities range from developing skill to professional musicians.
Like with the other arts, music provides a way of communication beyond verbal interaction which is good for everyone.
May is Mental Health Month and as you know anxiety often accompanies autism. I do a lot of work in my practice with children and families about anxiety and I have two books that were recently published about conquering The Worry Monster. Based on your international work and personal experiences, do you think anxiety is different for autistic folks vs. non-autistic? Do you have favorite suggestions on how best to deal with anxiety?
I find increased anxiety in so many people with autism and it’s great that you are doing work in this area, Dr. Dan. A possible cause for this increased anxiety is the greater level of unpredictability of the world for people on the autism spectrum. Often I wonder how anxious those who don’t have autism would be if their environment was as unpredictable for them as it is for individuals with autism.
The best way to address this type of anxiety may be to at first make the world as predictable as possible for the person with autism. Secondly, because the world inherently includes various amounts of unpredictability, we need to educate people with autism on coping with disorder. There are a number of books -- including your Worry Warrior books -- related to understanding the “hidden curriculum” or the unspoken rules of society and others which address how to handle anxiety that are helpful for people on the autism spectrum.
I find that no matter where I travel, there’s always something important to learn from how individuals on the autism spectrum are supported – and pockets of best practice or near best practice can be found almost everywhere.
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Thank you Stephen Shore!
Here is more information about Stephen --
Diagnosed with "Atypical Development and strong autistic tendencies" and "too sick" for outpatient treatment Dr. Shore was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Stephen is now a professor at Adelphi University where his research focuses on matching best practice to the needs of people with autism.
In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies., and the newly released DVD Living along the Autism Spectrum: What it means to have Autism or Asperger Syndrome.
President emeritus of the Asperger’s Association of New England and former board member of the Autism Society, Dr. Shore serves in the Interagency Autism Coordinating Committee, Asperger Syndrome and High Functioning Autism Association, United States Autism and Asperger Association, and other autism related organizations.