Team:NJMU-China/Human Practices

Can you hear the Sound of Silence ?

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Overview

We decided to work on this project mainly because one of our team members was frustrated by his nephew’s delayed diagnosis of autism. We found the struggle the families were facing before the child’s diagnosis, including economic and many other social-psychological factors. So, we decided to work on the early screening of autism, hoping to develop a domiciliarydomestic, economical and sensitive method that will contribute to the whole community of ASD families. Besides, We are committed to autism research, awareness, education and direct support for families facing the challenges of autism. Together, make the autism-friendly world!

Autism spectrum disorder (ASD) is the disruption of resonance for other people, the inability to resonate with other people's feelings and thoughts. In order to have a better understanding of autism phenotype and dilemma they are facing, we worked with autism communities, where we not only goet access to explore the inside world of autistic children but also learned about the experiences and thoughts of their parents and community staff. It wasn't until we work with the autism community that we realized we could do so much more.

1. Volunteer Work at Autism Children Special Education Center——for the care and further contact with autism

There is not much information on what an autistic life actually looks like, so people tend to resort to stereotypes. But some of the most common stereotypes¹ appear in the public media is being a supergenius like Rain Man. But the media representations of talent and special abilities are supposed to lead to a harmful divergence between the general image of autism and the clinical reality of the autistic condition. Only when we have direct contact with the autistic community can we truly speak for them from their perspective.

Studies have shown that early intensive intervention is directly correlated with positive outcomes in children with autism. By developing a novel and more convenient screening method for autism, we hold a key to prevent these individuals from devastating consequences that come with autism. However, the key is only useful in the needed hands, so our goal is not limited to just find the key, but to promote its application.

How do autistic children behave? Is it really difficult to communicate with them? On Aug 26th, we went to Haizhixing Autism Children Rehabilitation Center, a community for pre-school ASD children and their families. The volunteer work was quite simple—just to play with the kids: throwing and catching balls, playing on the swings, and lifting them up. Sometimes they would sit quietly to watch the cartoons. But the rules are clear: it’s the children that dominate the game, they just play whatever they want, we come here only to help them play. It’s really hard to get into their own world and to have resonance with them.

But they are not ignoring you, they are simply waiting for you to enter their world. Although some autistic children may not be able to speak or answer to their name, they can still hear your words and feel your kindness. The volunteer work broke our stereotypes and gave us a deeper understanding of autism. All people deserve acceptance, love, and care.

2. Interviews with professionals——for the improvement of our projects

We had interviews with professionals in the area of ASD diagnosis and treatment.

We conducted an interview with the founder of Haizhixing Autism Children Rehabilitation Center whereby we learned about the dilemma which most autism communities might face. The professional level of teachers in the community may be diverse, as it can be one way of pedagogy in one situation but some else in another. And it’s not always easy to get the families’ full support. But it’s also pleased to learn that autism communities are having support from the government and some fiscal benefits now.

We emailed Dr. Yichao Wang, a specialist in autism diagnosis, for his opinions about the design of our project. Dr. Wang recommended us to conduct parallel studies instead of focusing on the only one metabolites to provide a more concrete result.

Reference

1. Draaisma, D. Stereotypes of autism. Philos. Trans. R. Soc. B Biol. Sci. 364, 1475–1480 (2009).