Supporting Article

Observations of Dynamics in Families Affected by Autism

Lessons from China and the West


Families affected by disability have a number of common emotions and experiences regardless of ethnicity or geographical location. This paper looks at common concerns, struggles, and hopes that parents face when their child is diagnosed with a disability. Given the scope and depth of the various kinds of disabilities around the world, we will focus specifically on autism and the impact on parents in the United States (West) and China (East).

Autism is a neurodevelopmental disorder that affects communication, processing abilities, and social skills. In some cases, children with autism demonstrate antisocial and disruptive behaviors. Theories abound as to the cause of autism, but as of today there is no undisputed scientific or medical proof of its exact cause, nor are there any cures. Treatments do exist that assist persons with autism to learn new ways of processing information, to communicate effectively, and to grow in their social interactions. Because the characteristics of autism are so widely varied while maintaining some similarities, autism is referred to as a spectrum disorder—Autism Spectrum Disorder (ASD).

Most studies agree that autism is the fastest growing disability in the world. According to the Center for Disease Control in the United States, statistics show nearly 1 in 68 children in the U.S. are diagnosed with autism, and it has been called an “epidemic.” In 2011, at the International Autism Research Collaboration Development Conference in Shanghai, representatives of China proclaimed that autism is ranked number one among mental disorders in China.[1] At that time, it was believed that 1.7 in 1,000 children in China had autism. Last year in 2015, at this same conference, China experts revealed that the rate of autism in China is now 4 in 1,000 children.[2] The World Health Organization estimates that the number of autism cases in China is significantly higher.

While there is a stark contrast in statistics between the U.S. and China, that gap will likely grow smaller as China expands its research and diagnostic tools. It was not that long ago (30 or so years) that U.S. statistics on the rate of autism were similar to China’s report. Advances in research, awareness, and diagnostic tools have allowed for more precise and accurate accounting.

In 2013, researchers from the China Disabled Persons’ Federation, the University of Cambridge, and the Chinese University of Hong Kong discussed a collaboration to better identify the prevalence of autism in mainland China. Historical statistics have mostly been gathered in hospital settings and have taken into account only the most severe of cases. This new study is planned to take place throughout 14 cities in 14 provincial regions giving a better representation of the spectrum of autism in hopes of adopting standardized study methodologies and treatment therapies similar to those in the West.

One of the most successful therapies in treating autism is Applied Behavioral Analysis (ABA). ABA is an interactive therapy that assists with communication and social interaction by reinforcing positive behaviors (often with rewards) and redirecting unwanted behaviors. This therapy has become popular in the U.S. and other Western countries with thousands of board certified behavioral analysts providing training and support. According to one report, China currently has only four board certified behavioral analysts; however, it is ramping up for better diagnosis and treatment of autism to increase treatment.[3]  According to the China Disabled Persons’ Federation, there are now nearly 100 experts trained in diagnosing autism.[4] In addition, China has been engaging international organizations in response to the increase in autism. Annual conferences have been held over the last five years to better educate professionals and educators in China on this topic. Several autism clinics have also been established to assist families by providing therapies and life-skills training for children.

The affects of autism on parents is quite universal. Although many organizations provide various types of research and support to parents, there is no one expert, professional, or organization with all the answers. In addition, research and findings on the effects of autism are lacking, especially in China. For this reason, the author has chosen to write on three areas of impact upon parents based on his personal experience as the father of a son with autism as well as international experience in working with professionals around the world, including China.

Isolation

Parents with a child with autism will often report feelings of loneliness and isolation experienced as a result of having a misunderstood child. It is not uncommon for family members and social circles of friends to withdraw their presence altogether from a family affected by autism. In the West, this is still common in many settings; however, awareness and acceptance has grown tremendously in recent years. Entire organizations such as Autism Speaks and Autism Society have made huge advances in support and advocacy for families with a child with autism. At the same time, government social services and the educational system have advanced in serving children with autism in both mainstream situations (providing access to the general education curriculum) and self-contained schools. All these support systems have greatly reduced, though not eliminated, social stigma towards autism and the consequent isolation for parents.

In China, the struggle with isolation is still quite high due to less awareness and continued stigma among the public. In most Asian cultures, disability is seen as a shame, curse, or bad luck. Most schools in China have yet to develop programs that allow children with autism to be mainstreamed or receive education in a self-contained setting. Nevertheless, as mentioned earlier, progress is being made and several clinics are now functional. One example is Beijing Stars and Rain. Founded in 1993 by a mother with a son with autism, Beijing Stars and Rain has assisted over 6,000 families with education and training. It is held up as a model example of support to families by parents and volunteers. These and other systems of support help bring parents out of isolation and connect them to networks of other families.

Stress

Parenthood in and of itself has times of low and high stress. Autism often magnifies the level of stress for parents due to the nature of the disorder. Communication issues, inappropriate social behavior and at times physical outbursts of anger or frustration (sometime injuries to self or others) by a child with autism create challenging environments for parents. In the West, back in the 1940s, the phrase “refrigerator parenting” was widely used in describing parents of children with autism. It was believed that cold (poor) parenting produced autism in children, and therefore parents would often be shunned. Fortunately, advances in medical diagnosis have debunked this myth and instead recognized the heroic love and efforts of most parents having a child with autism.

There are various estimates of the impact of this stress upon marriages. Some organizations have reported extremely high cases of divorce among families who have a child with a disability while others report lower numbers. Because such studies have been narrowly focused on a specific disability or limited in scope of participants, the author has chosen not to use them. What is fair to note, based on reports in the U.S. and personal observation, is that divorce among marriages with a child with autism seems to be higher than the average rate of divorce. I would also argue, based on interviews with Chinese families affected by autism, that this observation holds true in China as well. The emotional stress upon parents, combined with a lack of support, social stigma, and even at times an impact on work or career performance can lead to a breakdown in the marriage.

Marriages that do thrive in the midst of raising a child with autism often attribute their success to a number of factors. One is support from family and friends. Having those that come alongside and provide a safe place to share fears and disappointments allows parents to feel accepted in the midst of their own pain and confusion. Another factor that has played a significant role is faith. Couples who share a common faith are often able to see their child’s autism as serving a greater purpose in light of the plan of a sovereign God. It is also an assurance that all will be well one day after this lifetime and provides hope for an ultimate healing. A third factor that provides support is finding a network of other parents who are on a similar journey. The camaraderie, fellowship, and understanding found in these groups provide profound comfort and a sense of “normalcy” in what has become a very untypical “normal” life.

Over the last two decades, such support networks for parents have developed in the U.S. and can be found in local schools, organizations, faith groups, and online community groups. This type of network has helped many parents cope with stress brought on by autism. In conversations with parents in China, the author notes that support to marriages is lacking. Such networks for parents are beginning to develop in China; however, they are still quite limited in reach. With such a lack of support to parents, the father is often the one to separate from his family or become uninvolved in family life. At a recent event in China for families with a child with a disability, the author noted that the attendance of families with no father figure was approximately seventy percent.

Fear

One of the impacts of autism on parents is fear. Interviews among a select group of parents in southern California revealed several top fears of parents. One fear is rejection of your child by society and his or her peers. Parents reported acceptance of their child as a major concern in their lives. Similarly, in China, the number one question posed to the author during interviews with parents was, “How long until my child is cured?” Parents are desperate for their child to become “normal” enough to join their peers in school and play.

A second fear for parents is safety. Children with autism often lack an ability to sense danger and make common sense decisions regarding safety. In the United States, forty-eight percent—nearly half—of all children with autism have a tendency to wander from a safe environment without proper supervision, and fifty-eight percent of parents interviewed reported stress related to their child’s wandering. In 2011, the National Autism Society reported that ninety-one percent of all deaths in children with autism were from drowning. Children with autism simply do not comprehend the dangers of water in swimming pools and other sources of water.[5]

The number one fear parents have expressed in interviews both in the U.S. and in China is fear of the future when they are no longer alive to protect and care for their child. Combining the above fears and many others beyond what this paper addresses, the anxiety in the minds of parents in both the West and the East are the same—who will love and care for my child when I’m gone? The establishment of long-term group homes in the U.S. for disabled adults has brought some alleviation for parents; however, concern over the quality of care in these homes remains a concern and in some areas there are waiting lists for acceptance. In China, long-term care has been primarily for the elderly. Community group homes for the intellectually disabled, though a new concept, are becoming established in some areas of China.

In summary, the author has minimally observed three areas of impact from autism on parents. It is this author’s experience and opinion that the impacts on parents in both the U.S. and China are the same. As indicated several times in this paper, the U.S. has advanced in recent years to provide a significant level of support for families and parents. These supports, while not completely alleviating challenges, do mitigate many of the negative impacts on parents and allow for more opportunities for therapies, education, and growth of children with autism. China in recent years has also begun to advance in its awareness and treatment for families affected by autism. While much progress is still needed, through harmonious collaborations with the healthcare systems, educational systems, social services and faith groups, China is making strides to properly address and care for those with autism within its society.

Conclusion

The majority of this paper has looked at the challenges that exist when parenting a child with autism. These challenges are not unique to a particular ethnicity or culture but are universal for parents around the world. The author would regret ending this paper without mentioning that parenting a child with autism also has many blessings and opportunities. Each child with autism is unique in who they are and the joy they bring to parents. The key to helping parents find that joy is in the support they receive from the community around them—whether in the U.S. or China. 

Image credit: a happy family by Eric via Flickr

Steve Bundy

Steve Bundy, an independent advocate, is the father of a son with autism, writer, and speaker on subjects of disability. View Full Bio