"Our doctor told me my son would grow out of it"

I have to say that presenting to a room full of government officials in a foreign country can be quite intimidating. Renee and I calmed our nerves by reminding ourselves that what we are advocating for is extremely important and it’s much better to appear confident rather than nervous. Our main goals were to teach them about autism (none of them had heard of it prior to our presentation) and to advocate for their support of Autism Care Nepal (they are an NGO), to require teacher and pediatrician trainings in Nepal, to provide school programs for children who have autism, to be part of the global autism research projects, to provide scholarships for professionals to have training, and to basically advocate for all people who have special needs. It was a very packed room and we discussed the basics of autism, showed videos of our team working with the children at Autism Care Nepal, explained how our school programs and diagnostics work in the US, and showed a video from a United Nation conference about how many countries in the world are making autism research a priority, among other things. We also notified them that Autism Care Nepal already has 150 registrants. 150 children/adults having autism is an extremely high number when most of the country still doesn’t even know the word autism yet. As we described the symptoms and criteria of autism, many people in the room were nodding their head in recognition as if to say that they know a child or adult who reminds them of this. They asked great questions and gave us compliments about the presentation and for teaching them. We emphasized the importance of early intervention and therapies and that autism is not something people just “grow out of” as many of the parents at ACN were told by doctors. Overall, we thought it went really well, but we won’t know for a while if they will act on the things we suggested.

The following day, we headed to the District of Education of Bhaktapur, where we presented to 22 principals from different schools. Again, there were many heads nodding in recognition to the symptoms of autism and a few people shared that they believe the have family members and students with the disorder. Our presentation seemed to be received very well and we were told that we shared “much good information in a short time”.

The next day, Renee and I spend a lot of time at Autism Care Nepal interviewing parents. They were extremely honest and heartfelt as they told their stories and there were a lot of tears shed. There were many common themes during all of the interviews. 1. They were told by doctors that their child would grow out of whatever was wrong. 2. Their child has rejected by schools and he/she is unable to attend school. 3. They felt very alone until they found other parents (mostly through ACN) who were going through the same thing. 4. They have been told by people in the community that it is their fault because they just can’t control their child. 5. Some were unable to get a diagnosis or find out what was wrong with their child until it was past the crucial early years of necessary intervention. 6. They are extremely grateful that Knowledge for People cares enough about them and their children to come all the way to Nepal to help them.

We know that we are just scratching the surface of the support, interventions, and school programs that are so deserved in Nepal, but we are hopeful that we have uncovered something that can’t be ignored.