Amidst the Choices between Nightmares, Parents Should be Empowered to Educate Their Autistic Children

In the U.S., the Individuals with Disabilities Education Act (IDEA) entitles children with disabilities to a “free and appropriate education.” To parents of autistic children in Singapore, the U.S. must seem like a paradise, in the face of chronic shortages of affordable services for their children. However, before all you parents start packing your bags, I must warn you that the quality of the services in the U.S. leaves much to be desired. Many parents of autistic children from Asia and the Middle East have already made the move to the U.S., only to return home, disillusioned by their experience with the public school system. After one year, they realize that the quality of the education received by their children was definitely not worth the sacrifices of separating from their loved ones and their homelands.

Before you shake your head in disbelief, let me introduce you to just a small sample of the “inappropriate” professionals I had encountered in my seven-year navigation of the special needs education system in the U.S. They include: a manipulative and abusive teacher with Asperger’s Syndrome (a high-functioning form of autism) who could not interact properly with either the children or the parents; a speech therapist who suffered from speech defects; a School Psychologist with unintelligible speech; along with apathetic teachers and classroom aides who were not interested in helping the children to learn.

When parents complain about these professionals and seek their removal, they encounter bureaucratic and political barriers. Fearing the financial repercussions of lawsuits launched by these individuals, school districts dole out indefinite “second chances”; transfer them from school to school; or leave them on the payrolls even when they are no longer working. The interests of the diverse adult parties are thus promoted at the expense of the well-being of the children.

Confronted with these choices between nightmares, what is a parent of an autistic child supposed to do? Even though I was living in a country that purportedly had the best practices and widely available services, I was compelled to take the initiative to be the “expert” of my son. As I observed the specialists and educators struggle to get my son to make eye contact, follow directions and interact with them, I realized early on that I could not simply depend on them to lead my son out of his world.

Consequently, over the last seven years, I acquired a treasure trove of ideas and strategies that were modified or extended from their traditional versions. I became aware of the power of my knowledge and experience when the changes I made to the professionals’ approaches were effective in helping my son to discriminate between a ball and a diaper; imitate speech; read and write. This awareness was further affirmed when I found myself alone in my efforts to identify strategies to curb my son’s aggression and succeeded.

Looking back on these few years, I realize that I had invested the greatest effort in helping my son. Not because I was the most knowledgeable, or even the most experienced, professional. Rather, it was simply because I had the intrinsic motivation and the natural incentive to do so. At the end of the day, after the school bell rings, when the hour of the therapy session is up, the professionals have the luxury of bidding my child and his issues farewell, till the next time. For me, there is no real reprieve. If I do not find the solutions to combat his difficulties, I know that they will continue to wreak havoc in our lives, long after his therapists and educators have departed.

Because of my own journey, I believe that parents are an invaluable and untapped resource that should be used to address the lack of affordable services for autistic children in Singapore. Instead of waiting for specialized professionals and institutions to come to the rescue, parents in Singapore should rise to the challenge of educating their children. By enrolling in various training programmes, participating in autism conferences and forging connections with their peers, parents can serve as a viable substitute. To contribute to this endeavour, I have created a learning programme in order to train parents to provide quality home-based educational services to their children.

It is time for parents to empower themselves by converting their frustration and helplessness into meaningful activity. With our accumulated knowledge, experience and commitment to our children, we can make a difference in their lives. Although the road ahead is paved with difficulties, parents who are willing to embark on this path of self-sufficiency will never look back in regret, as they accompany their children on their challenging paths.