Jiang Yingshuang is the founder of Dami & Xiaomi, which operates a comprehensive information platform to cater to children with autism. Jiang previously worked as a senior reporter for a major newspaper in China.
This interview has been edited for brevity and clarity.
KrASIA (Kr): What is it like to raise an autistic child in China today? Can you elaborate on the difficulties?
Jiang Yingshuang (JY): As a mother, I know from personal experience that raising a child is no mean feat. And in the years of building up Dami & Xiaomi, I’ve gone a step further: to explore the struggles of raising an autistic child within the family unit. I maintain close contact with these families raising autistic children here in China. Perhaps the best way to describe their journey would be ‘a lifelong challenge’ – not only in terms of the financial burden to the family but also because the level of education and quality of medical treatment for autistic children is often inadequate.
Presently, there is a shortage of autism care professionals in China. We do not have enough specialists, and so many suffering from autism go undiagnosed and those who are diagnosed receive very basic treatment. Medical resources are also aggregated in national or state hospitals, with almost zero benefits at the grassroots level. Therefore, the problems in autism exist throughout the entire process – from consultation to diagnosis to treatment to follow-up.
At each stage of life, autistic individuals face challenges. In early childhood, they receive delayed treatment due to the shortage of specialists and resources. Growing up, where schools are unable to offer holistic education and an inclusive environment, they are often rejected or persuaded to leave. Entering adulthood, the lack of adult care facilities and inclusive employment become obstacles. They are cooped up at home and develop emotional issues. Their parents quit work to take care of them at home. Pressure builds up in the long run as everyone is exhausted. Family ties are strained and divorce rates in such families increase. When the individual’s parents grow old, losing the ability to care for them, the onus then falls on the government.
Despite such challenges, it is worth celebrating the efforts of our community. Organizations are helping in their own ways, be it nurturing autistic children or integrating them at school or providing inclusive employment, or creating a better social environment. This brings us hope and optimism.
Kr: Why is it important to encourage autistic children to participate in social activities and integrate into society?
JY: Over the past ten years in this field, I’ve heard these concerns from parents of the autistic: What kind of future will my child have? When I die, what will happen to my child? How will my child survive, and who will take care of him?
We all know that autistic children have more serious social interaction barriers. Parents are mainly concerned about how they can integrate into society and what kind of jobs they can take on in the future.
Hence the ultimate goal is to help these children overcome the fear of a foreign environment, learn to communicate with others, increase self-care ability, and social adaptability. This will give them a strong boost toward independence and fulfilling their greatest potential in life.
As part of our society, autistic individuals also need to adapt to societal standards. They should strive towards being a “social person” – one who is able to live, learn, and behave as a member of society. We have to put in additional effort to activate their senses, improve soft skills, and enable them to communicate freely with the world.
Kr: How do we determine what they need?
JY: Every autistic child has different symptoms and personal needs, which means we need to understand them on a personal and thorough basis.
First, we need to know the child’s developmental level. This would give us an idea of the child’s existing abilities and provide a clear indication of what is lacking, or where he or she is deviating from normal levels of development.
Next, we need to be keenly aware of the child’s physical limitations. As autistic children suffer from impaired growth and development, their physical appearance would differ from the normal person, in terms of height, posture, and more, also leading to certain behaviors. If we are able to distinctly recognize the child’s unique traits, we can accurately maximize potential and abilities while working on weaknesses.
It is equally important to understand the child’s interests and hobbies. To pique interest and promote meaningful learning, we can incorporate things that the child likes to do, for a start. Upon laying a strong foundation of knowledge, we can then expand the scope of learning and interests.
At Dami & Xiaomi, for every child registered, we conduct in-depth research to learn about his or her family background, growth, and developmental journey. We listen closely to the specific needs which are highlighted by parents and do a thorough evaluation to understand the child better.
Personal to each child, we also collect information on day-to-day life, parental feedback, and perform interactive tests to create a personalized intervention plan. This aims to meet the specific needs of the child – on top of basic treatment to guide the child through behavioral norms, we value-add with speech, motor skills, and action coordination therapy as well as other aspects in our life skills workshops. Overall, this results in holistic education.
Another key aspect of our holistic education would be the transition from one-to-one intervention to group classes. This is meant to simulate the adjustment from kindergarten to a standardized school environment, where teachers provide less guidance and handholding whilst children start to mingle and pick up social skills. It is also something that autistic children may never get to experience, without the right facility and opportunity.
For the well-being of our children, we emphasize timely follow-ups on each child’s progress and effective communication with parents.
Kr: What can families do for their autistic children?
First, maintain a home environment that provides warmth and a sense of security for the child. This is essential because autistic children inevitably face pressure and anxiety dealing with other people outside, and turn to home for familiarity and support.
Next, parents should reject any stereotypes surrounding autism. Instead, engage the child in ‘socialization’ – making friends with neighbors and peers around the same age, working on communication skills, as well as picking up new hobbies and skills.
I believe strongly that autistic children learn best from their family members. They typically do not know how to behave in a considerate manner as society would expect, but can quickly learn from the role-models like parents or from situational games.
Kr: What can society as a whole do for autistic children?
First, improve early childhood care. Given that this is the best stage for early intervention and therapy, parents and autism professionals should work closely to develop an autism intervention plan. This would improve the autistic child’s quality of life and develop holistic abilities.
Growing up, schools and education professionals should collaborate with parents to integrate the autistic child into the system. For those who are not ready to enter ordinary schools, it is recommended that the government and educational institutions actively develop an alternative so that the children still receive holistic education and can be integrated back into society over time.
As an adult, whether autistic people are working in a corporate office or doing a home-based business, society should show support for the efforts of autistic individuals and create opportunities for them to succeed in their fullest potential.