In late November 2014, a parent organization arranged a one-day parent support training session for parents of children with intellectual and developmental disabilities in a city not far from Beijing. While preparing for the training, the host organization leader informed the trainers of the major issues this organization encountered in their parent support work, such as the low awareness of disability rights amongst families of children with disabilities in the local area, and asked trainers to focus in their teaching on raising awareness and changing attitudes.
During the training, four trainers talked about disability perspectives, inclusion, research on the needs of families with children with autism, and implications in China, as well as parent organizations and peer support between parents.
When Q&A (Question & Answer) period came, one mother of a girl with autism stood up and, with tears rolling down her face, said, “We have talked about inclusion and its importance for our children. I am not sure if inclusion is good for my child. My child gets hurt a lot when she is outside in public. People think that she is abnormal, stare at her, and make fun of her. She is just a child. How can she bear these things? As a mother, I want to protect my daughter with autism from getting hurt. I don’t want my child to play with those ‘normal’ kids. I don’t want to expose my child, a special kid, to the public in which she is viewed as different and strange. I don’t even tell my best friends that I have an autistic child. Please help me to understand why we should support inclusion.”
One of the trainers replied, “I am totally with you in the suffering of your daughter. I don’t have an easy answer for you, but I do have three questions for you to think about. First, you said that others viewed your child as abnormal. Do you think she is normal or abnormal? Second, when others stared at your child and disrespected her because she has autism, is that the mistake of your child or others who treated her that way? Third, as a parent, which is the right way to protect and help your child? Is it to hide your child and her disability from others and limit her growth at home or is it to walk bravely with her, prepare her for social interaction, help others to understand her disability, and change the wrong attitude of others to create a better, inclusive, and supportive community and society so that your child can have an independent life?”
After the session, trainers had dinner with a few parents to talk about parents’ major concerns and questions. The mother who spoke up earlier also joined the dinner. During the conversation, this mother talked about more details of her experience with her daughter, such as how she hid her daughter’s autism from friends and extended family members. At the table, most of the parents wanted to help this struggling mother.
One of them said to her, “Maybe your friends already know about your daughter’s autism. They just don’t know how to ask. I am sure your friends want to help if you are open to talking with them about it."
Another one also asked kindly and gently, “What do you think about the three questions the trainer asked you today?”
The mother replied, “I had already begun to question the way I protected my daughter. But I need more time.”
Trainers left this city in the evening with deeply burdened hearts. One week later, the trainers heard from other parents that this mother, for the first time in her life, talked to her friends about her daughter’s autism. Her friends responded, “We already knew. We are so glad that you wanted to share with us this information about your daughter and your feelings. We will be happy to learn about her and help you.”
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.