Guest Writer: Renee Poole
My name is Renee Poole and I’ve been working in Seattle for the last four years in autism family services and in research. I started at ASTAR (Autism Spectrum Treatment and Research) Center in 2008, then moved over to Children’s Autism Center in 2009, and continued working there until this last December 2011. I have loved getting to know the most amazing families as well as providers that offer some of the best service I’ve seen in health care.
Four short years seems to have taught me so much. Before my work with autism, my biggest passion was culture and anthropology. Naturally, as autism became my new focus, my mind began to wander and try to link them both together. I wondered how other cultures are diagnosing autism and if they even had a word for autism. How are their communities supporting families and individuals with autism? Are people with autism accepted in the community or stigmatized? Do kids with autism have a chance to go to school? Do they know about weighted blankets and how amazing they are? (Yes, I too love a good nap with one!). So many things I began to wonder.
There was only one thing to do: Go!
I had the unbelievable opportunity to travel with a local Seattle non-profit group called Knowledge for People (KfP) to Kathmandu, Nepal in July of 2011. A group of ten Americans specializing in occupational therapy, special education, speech language therapy, and other autism-specific treatments and therapies came with us to conduct a twelve-day training course at a local Nepalese autism center.
Parents, teachers, pediatricians, speech therapists, and other community members traveled from near and far to attend the training – one occupational therapist even came from India to participate. There were 35 participants in all, and our ten KfP instructors worked countless hours molding the curriculum and the training to the needs and demands of the local community.
I’ll never forget some of the beautiful kids I met at that autism center in Nepal. There was Silvia, who did not have many words, but rocked back and forth as if swaying to some inaudible strand of music that emanated from her very being. And Kreet who was so entranced by an ever-circling spinning top that he reacted with such unalterable force, nearing a serious meltdown, when I tried to redirect his attention. And Katsu who loved the light from our presentation projector so much that all he could do was stare in utter fascination, flapping his hands in front of it over and over and over and over. I sat quietly and observed, watching this Nepalese community transform in my mind into the people I knew back in Seattle. I quickly realized that our cultural differences were bridged by these beautiful kids and adults with autism.
Back to my original questions in “Autism Anthropology”. Most people in Nepal have yet to hear the word autism. There is not a Nepali word for autism. Granted, there are more than 100 languages spoken there so they have adopted the English word of autism and are just now starting to use it.
That led me to my next question: how is autism diagnosed? I learned from talking with some parents and pediatricians that there is a lot of bouncing around from one provider to another. There might first be a check on hearing, then speech, then on to a pediatrician, psychologist or psychiatrist, and then finally, maybe a diagnosis. The fact of the matter is, there are not many providers in Nepal who diagnose autism. Many pediatricians still are unaware of autism and the early signs, so it is often that a child is age 4-6 before he or she receives a diagnosis if they do at all.
As I continued to talk with one mom in particular named Kreepa, she mentioned that it is very hard to participate in the community with her son with autism because he looks like a typical child, but does not behave the same. Many people look down on her because they think she is a bad mother when she cannot calm one of her son’s meltdowns or get him to sit still. She said that there is a stigmatization because people do not understand what autism is or how to react to it. This resonated with what I’ve heard from parents in Seattle – even with autism awareness what it is today, parents still often feel blamed for their child’s behavior in public and their kids are misunderstood.
One big difference though between there and Seattle is in education. When we asked her about a chance for her son to go to school, her words echoed that of many we posed this question: no. Often parents will try and send their child for a few months, but they are usually either ignored by the teacher, transferred to another school, and then eventually asked to leave.
However, Kreepa is encouraged because she is beginning to see a sense of community emerge in Nepal among families with autism and others. In 2008, an Autism Center called Autism Care Nepal opened and has 150 registered families from the surrounding Kathmandu Areas. Kreepa has a place for her son to come a few times a week and learn in school at Autism Care Nepal as their teachers receive ongoing autism-specific training. Kreepa can share her struggles and successes with other parents and begin building a unique future for her son alongside other parents with similar hopes and dreams. The directors of the center are lobbying the government to provide a half-day teaching course on autism-specific strategies, and to define autism as a distinct diagnosis.
In retrospect, it was fascinating to arrive in such a seemingly different culture and realize that we, in essence, were exactly the same. We all want our kiddos to have a chance at education and to be accepted in the community. And we adults want to communicate love and affection to our children and to, at the very least, understand those who are most dear to us. Our religion, opinions on government, food, shoes, hair, pitch in voice, average height, and hobbies were very different. Yet in that place, discussing our hopes about what we see for our kids and the growing autism community, we spoke with one impassioned, united voice.
(All photos are property of author)