Sticking In Loneliness

As a psychiatric disorder, autism was officially included in the scope of our sample survey on disability in2006. Our country has no nationwide census of the patient with autism spectrum disorder. However, according to the statistics of WHO, there are0.6-1.8million children with autism in the mainland of our country. And now the autism prevalence rate shows an increasing trend year by year. Since children with autism are unable to communicate with the outside world, caregivers become the bond connecting their children with society. Raising children with autism is full of stress and challenge to caregivers, so we should pay close attention to caregivers while giving an eye on children with autism. We should listen to their voice and pay attention to their life. Therefore, the core research subject of this article is the lived experience of caregivers of children with autism.This study used qualitative research method, chose7caregivers of children with autism in the X rehabilitation institution of Shanghai as the research objects. The study used face-to-face interview and observation as methods of data collection, analyzed the qualitative data systematically. This study utilized the four existing theme about life world in phenomenology as theoretical guidance, and explored the time experience, physical experience, space experience and relationship experience of caregivers of children with autism. Meanwhile, the study analyzed the factors of the lived experience of caregivers of children with autism.The study found that the lived experience of caregivers revolves around the children’s diagnosis, recovery and schooling. On the road of diagnosis which twists and turns, caregivers suffer a hard time. On the long road of recovery, caregivers experience all kinds of tastes of life, they have physical experience of fatigue and happiness, they are immersed in heavy care tasks without self space, in the relationship with others they experience warmness and coldness, and their time experience is the hope and worry about their children’s future. On the difficult road of schooling, caregivers have helpless feeling, because they can’t get support from institutional environment of society. The study also found that the agency of caregivers, relationship and social environment are important factors of lived experience of caregivers. This study finally proposed some suggestions of service that social work and social worker can provide for autistic children and their caregivers in the stage of diagnosing, recovering and schooling.