Andy SHIH, Autism Speaks senior vice president for scientific affairs, consultant of the Scientific Committee, researcher, expert staff and leader of volunteers in developing and implementing the research program of the organization provided an interview about “Parent Skills Training Program”, project that will be implemented in Romania. Shih’s Global Autism Public Health (GAPH) team provides guidance and technical support to governments and parent-advocacy groups on developing national autism policies and feasible and culturally appropriate services around the world. Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation.
Andy SHIH: “you don’t have the answers everytime and even if you think you have the answers, your answers might not be the same as the others”
You are the vice president of Autism Speaks and also a researcher. What can you tell us about your professional course?
I am trained as a basic scientist and I’ve been in autism community for 16 years now and I have managed our resource investments in these areas from generics to epidemiology to neuroscience. About 8 years ago I’ve started our public health programme which became a global effort that involves many countries. That’s what led us to come to Romania.
Please tell us the main idea of this program that you have presented.
The purpose of this program is to address the capacity challenges because we see it everywhere in the world, even in high-income countries like the US and UK where there is also not enough autism services specialists to provide adequate intervention and care for families. So research in recent years have taught us that you can train parents and caregivers directly so these parents or non-professionals can use this knowledge to implement ABA-based intervention at home. It doesn’t replace an ABA specialist but it allows specialists to extend their impact and reach within the country. So, the idea is, instead of one specialist being able to serve for two or three families in a given time, one specialist can potentially support now twenty to fifty families.
What are the skills or the qualities that a master trainer need to have in this project?
The most important skill that a master trainer should have is empathy, to be able to listen to the parents and families, understand their needs, be humble and to understand how to best to share with parents the skills they need to improve their child’s outcome.
Who will be the facilitators and the master trainers?
So, who will pay these roles will be determined locally and I believe the solutions in Bucharest, maybe in Cluj, somewhere else in the countryside of Romania but the idea is that master trainers need to have some specialized knowledge about children with developmental disability, including autism, while the facilitators can be everyone, they can be anybody from Psychology or can be anyone with accreditation, teachers, nurses or could be the parents. In many countries we work in, the facilitators are parents.
How important is such a project for those involved in the issue of autism spectrum disorder?
I like to think that this is an important project because like I’ve said, many of our children don’t have the best outcome because they can’t get the best adequate services. Therefore, this help solve the problem by bringing the services home.
What represents, in your opinion, a normal development of a child?
There is such a wide range; I mean how do we define “normal”? You know, it depends on the criteria that you use. I am normal in many places, I am also considered abnormal in many places. I think that the idea is more about functioning, more about the ability of a child or an individual to integrate into a family and into the community. And that standard of integration influenced by culture and settings, so it is different in Romania than it’s in New York. So the conclusion is: it is also defined locally.
Please explain the difference between the psychological services, in Romania and in the US, if they are.
I think the differences are in experience and training, probably, but those things to me are easy to address. I think that the similarity I’ve seen in this profession is, really, the compassion, and real concern about the well being of these families and that is the most important quality we need in a professional and in our community.
What is the key of success in life?
Success in life? Always be open to learning, be humble, you don’t have the answers everytime and even if you think you have the answers, your answers might not be the same as the others. So, I think you have to able to appreciate the diversity and to be able to accept and celebrate the differences. There are always things you can learn to improve yourself and the work that you do. For me, it’s the most important thing in life.
What can you tell us about the values in your life…
To serve, to fight against injustice and to make sure that every individual has the opportunity to reach their potential.
Do you believe in what you are doing, in this program for example?
Oh, absolutely. When I see people involved in this discussion and the passion, because you see the passion in the people makes me very happy. Because that means that they are determined and dedicated.
What message do you want to send for those who read us?
Don’t give up. Continue to work and to collaborate because the strength comes together when you respect the parents and the families. Their interests always need to be first and there is always an opportunity for better tomorrow.
* Interview by Elena UNGUREANU, psychologist