by Jess
For the last ten days we have had fifteen visitors from China, as part of the Heartspring Teacher Exchange program, who come for almost two weeks to observe, learn, and understand not only what we do, but how we do it. Last evening I had the honor of hosting the entire delegation at my house for dinner, and today my world view is refreshed, and clear, again.We share so much more than we might imagine; beyond the limiting veil of language, at the heart of emotion and experience, is a place of togetherness. What has been the most remarkable, and perhaps most important, experience is what I think of as, “Applied Time Travel”.
Having a child with a disability in China is culturally framed by shame and tragedy, and the belief that you must have done something wrong, that you “deserve” this child, as though some sort of punishment is involved. Disabilities are “not public” in China, and difficult to address in terms of remediation, because the cultural threads run against “publicly endorsed services”. Having a child with a disability is seen as a manifest embarrassment indicative of the parent’s basic moral character (flaw); this is a reflection of “The People’s” basic moral character, and by extension, a reflection of the state and government. Chinese parents who encounter autism in their children don’t have few resources…they have no resources. And as if the point hadn’t been made sufficiently, the chinese word for autism actually means “loneliness”.
But things are changing. China is awakening to more children with autism every day, and the rise of one person’s vision (ten years ago) has given wings to a parent led grass roots special education movement, which has now come to the attention of government officials, which is changing the infrastructure, with the goal of meeting the needs of the people. The most recent estimates suggest that China has 1.3 billion citizens; if it is globally true that autism affects 1 in 110 children, then there are approximately 11.8 million individuals with autism in China. However, we’re not sure these numbers are actually reflective of the incidence rate in China.
We actually have very little information about the prevalence of autism in China. But we do know the need for services has risen to the attention of school directors across the country, we know that schools for autism have been set up, and we know that hospitals are paying attention by developing autism clinics. Autism is on the verge of a major “presence” break through in China, and as parents everywhere will tell you, the need is overwhelmingly great. And while China is a big country, with a big set of needs, and the ability to contribute “big” resources, consider the global picture. Based on 2007 data, UNICEF estimates that here are now 200 million children with disabilities in the world, and less than 10% ever see the inside of a classroom. The need is truly great.
Tian Hui Ping, also known by her English name, “Hope”, is a parent of a young man with autism. When she began, ten years ago, Hope taught three students and their parents in her kitchen. Today, there are over three thousand families from all over China who carry the basics of the autism sped toolkit she provides in her 11-week family program to their home communities. One remarkable woman’s crusade has yielded the seeds of change for treatment of Autism in China. I have been privileged to be a part of that effort for the last six years, and with an inside view of the outcomes, I can honestly say I have never seen its outcome-equal. Her story is so compelling you might want to take a moment and read or watch the following CNN sidebar about The Stars and Rain Institute.
It is a remarkable time to be in China, from many perspectives. Economically, China is exploding with global dominance; technologically, China is playing leap frog with innovators everywhere; socially, the fruits and implications of a one-child policy (imagine a culture without aunts and uncles, without extended family to help you care for your child with autism) and the burgeoning information culture threaten to tear apart or conversely solidify a five thousand year history of the nation state. In such radical times of transformation and revolution, many smaller “sub-revolutions” are born…and the Autism Revolution in China is beginning right now. We can all bear witness, we can all help, we can all support parents, and children, everywhere. But how?
China is at the very beginning of its Autism journey. Perhaps the single most important part of this journey, for me, is that China does not repeat the many mistakes we have come to clarify over the last forty-plus years of research. There is no good reason to try things that we have proven not to work. There is every reason to promote scientific rigor in autism treatment methodologies with China. Our chinese guests are fascinated by the “cure-du-jour” and alternative, mostly anecdotal, fad treatments such as secretin therapy, gluten free diets, vaccinations, sensory therapy, light therapy etc. Because they are at the beginning of their journey, and because most treatment seekers are also desperate parents frantically trying to “cure” their children, I fully understand this quest for answers in all places. But it wastes valuable resources, and valuable resource time, for the outcomes structure of each child. While understandable, it is not reliable.
With over forty years of peer reviewed research history about what we know does work, China has the unique opportunity to direct its special education policy structure to do some “applied time travel”. Chinese experts should travel back in our peer-reviewed literature and learn to dismiss the ineffective, the invalid, the unreliable; they should also learn, conversely, to accept and implement the effective, the valid, the reliable treatment methodologies we have embraced. Without getting into the politics of IDEA or any other “rights” issues, suffice it to say that applied behavioral intervention with micro-environmental support, measurable progress structures framed by measurable behavioral events, and long term outcomes goals and objectives framed in behavioral terms work, for all kids, everywhere. This is the take-away, this is the fact, this should be the focus of treatment. All China needs to do, to take a forty year leap forward from their present special education circumstance, is to pick up from where we are currently, and to join us in this effort.
There is not a parent of a child with autism who, in their heart of hearts, would turn down a “cure” if it became available. There is not a soul I know who doesn’t wish a “cure” for Autism. And our chinese counterparts, whose palpable excitement and raw need for solutions is dampened by the reality that there is no such cure yet, are struggling to get a grip on the things they can do to make a difference for their children. While I do not think we will see a “cure” in our lifetime, or perhaps ever, I do know that we can create a greater degree of functional independence in children with autism, and that this takes resources. We know how to do this because we learned the hard way, through experience, and peer reviewed research, through trial and effort, helping some and not helping others. Imagine the power of China’s economic and technological productivity focused on the outcomes of children with autism everywhere in the world. When I talk about force-multiplying the resource base, that’s what I’m talking about.
| Tweet |
The other night, when our fifteen guests were at my house for dinner, I introduced a quintessential American dessert – Ice Cream Cake. It was a “flat” cake, and the surface was shaped like two interlocking puzzle pieces. On one puzzle piece was the Chinese flag, and on the other, the American Flag. They came together as one. “If the symbol for Autism is to be the puzzle piece,” I said, “then China and the United States are just two pieces of the global Autism puzzle. Tonight, we have found a connection between two pieces, and our job is to build out the whole. It is time we stop thinking of ourselves as different groups engaged in different efforts, the language divide not withstanding. It is time we think of ourselves as one group, engaged in the same task, completing a singular global puzzle. Tonight, as parents, as educators, as citizens, we are one and the same, to help our children succeed.” This is the world view we must adopt to help our children, and their children, in a global special needs future.
We must share our knowledge, make it accessible in Chinese, and China must do the same, making their discoveries known in English. We must open our hearts, borders, and human interest envelopes to the point of complete transparency. I realize what I am asking – transparency in China is more than just “revolutionary”, the call rises to the level of civil disobedience. I know what I am asking. But our children are not served well, and autism has never been remediated (or cured, for that matter) by silence and an absence of information. The treatments we have, that do work, are the result of a long history of collaborative research, of fierce trials, and many, many children paid the price of not getting better at all throughout those forty years (by being in control or placebo groups). We, as well as China, should honor their memory, and the collective price our children have paid, by not repeating the mistakes of the past, and by doing something about the future based on the present. Further, and most importantly, our children simply do not have the time - we know that the sooner we intervene with effective practices the greater the degree of functional independence we can achieve. It is neither ethical, nor is it wise to provide anything but evidence based practices. China must proceed with special needs treatments from our baseline, not their own; it is the only way to yield immediate and substantive difference in the lives of children with special needs in China. And there are many such children in China.
This is an open invitation for teachers everywhere, here and in China, to do some “applied time travel”. If you believe in a better tomorrow for children with special needs everywhere, I invite you to be part of this time travel experience. Please, get involved with our China Teacher Exchange program, or reach out to a classroom of children in China, build bridges with China in whatever contexts you can, and reaffirm the need to act for children with special needs, based on the scientific information we already have. Do a special project with your classroom kids on China and Special Needs, learn about the culture and build the connection towards the next generation – normalize the interactive effort, step beyond the cultural biases, model the culturally integrated and research-transparent “tomorrow” our children with special needs will require to succeed. Help us seize this opportunity to lay the foundation for a country at the beginning of its special needs treatment journey. Every connection you make, whether focused on special needs or not, will help, will move our efforts forward. Besides, how often do you get the chance to propel a nation forty years into the future?
About the Author
Currently, Chris Vacek is the Chief Innovation Officer for Heartspring. Mr. Vacek has been a member of the Heartspring community since 2000, and has overseen Heartspring’s technology development process since late 2004. As Heartspring’s CIO, Mr. Vacek oversees the IT Department, is responsible for the organization’s strategic technology plan, and promotes technology culture change in special education. His previous work experience spans almost twenty years of computer expertise, includes several successful business ventures, as well as strategic planning for major suppliers to original equipment manufacturers such as TDK, Cisco, Intel, Siemens and others. Currently Mr. Vacek is pioneering new ways of using technology to help children with special needs reach their potential by establishing relationships with business leaders in the local and national community. By utilizing existing technologies in new ways, Mr. Vacek’s focus is on shifting the current special education paradigm from reactive remediation to proactive outcomes through integrating data from all disciplines into a single special education solution. Mr. Vacek’s involvement in Special Education began when his son was diagnosed with special needs almost 16 years ago. After setting up and running a successful ABA home program in Colorado, Mr. Vacek has been focused on providing behavior intervention services for children with autism everywhere. Mr. Vacek has been a vocal special needs advocate, a state representative for the Williams Syndrome Association in Colorado, sat on the Colorado Department of Education Special Task Force for Autism, and founded several parent action groups. Mr. Vacek holds an M.A. from New York University in the Sociology of Media, a Television Production degree from the Center for Media Arts in New York, an IT degree from the Information Technology Institute, and is a Certified Legal Video Specialist by the National Court Reporter’s Association. Mr. Vacek resides in Wichita with his wife Barbara and their three children, Jack, Laura, and Sarah. You can contact Chris at www.SpecialEducationTech.com
