Catching it early has become the watchword in the medical profession for the handling of disease, from cancer to STDs. While early identification of a disease may not necessarily ensure its cure, it opens up more options for mitigating its effects. This applies also to various types of intellectual disability such as autism, but inadequate awareness among parents can often mean that identification of the symptoms is delayed until quite a late age, when treatment is much more difficult and time consuming.
According to Lei Yu Hsiu-hua (雷游秀華), the chairperson of the Foundation for Children with Developmental Delay (財團法人中華民國發展遲緩兒童基金會), there are six to eight children who suffer from intellectual disability for every 100 born. A 2002 Ministry of the Interior report indicated that at that time, 70 percent of children identified with developmental delay were older than four years old.
“This is already beyond the best time for early intervention,” Lei Yu said. “We want to identify the symptoms before age three, when treatment is much more effective. If you get things right at the beginning, it is much easier later on. One year of treatment at age three could achieve more than 10 years of treatment later on in life.”
Lei Yu said that the late identification of children with developmental delay was due to a wide variety of factors.
“In rural areas, it is a mixture of a lack of awareness of these conditions and distance from medical facilities,” she said. “But in the city, with higher education standards, the lack of exposure to child rearing can be a problem. Many parents only have one or two children, and especially with the first child, they have no point of reference as to the proper progression of development. It is not until children go to kindergarten or playschool that developmental delay becomes apparent in contrast to other children,” Lei Yu said.
It was this problem that led Lei Yu to found the Foundation for Children with Developmental Delay in 1999 to focus on the specific needs of infants and raise awareness for the need to identify children with special needs as early as possible. The foundation provides some services, sending therapists to remote areas in northern Taiwan, and is also a platform for policy advocacy.
Play is learning
As part of its mission, the Foundation is currently sponsoring a visit by Rosemary White, an occupational therapist who advocates a type of treatment for infants with developmental delay called Floortime, that, as its name suggests, emphasizes intensive but playful interactions with the child. It promotes the following of the child’s lead and harnessing the child’s natural interests, rather than more conventional methods based on a pedagogic model of instruction.
The three-day workshop, which will take place in Taipei Dec. 1 to Dec. 3, is aimed both at medical professionals and parents. According to Chieni McCullough, an occupational therapist in Taipei who has worked extensively with the foreign community, the advantage of Floortime is that “it is play based. Every child knows how to play and when they play they are constantly learning things,” she said.
Speaking about the current situation in Taiwan for most students suffering from intellectual disability, McCullough said: “The model in Taiwan is predominantly teacher-centered. As with education here, the teacher knows everything and you do as you’re told. This is very different from looking at a child to see why they can’t or won’t do something, pulling yourself away to look at the bigger picture of why a child can’t do something, rather than a behavioral model in which a teacher demands the performance of a certain action.”
McCullough described Floortime as a system that “focuses on the relationship between a child and their caretaker, and it really empowers the parent to really get to know the child and focus on their strengths.”
McCullough, who is one of the main organizers for the workshop, said that they had sought sponsorship from numerous professional organizations, but had been rejected.
“I don’t want to badmouth the professional organizations, but generally they hadn’t the time or the money,” McCullough said.
Lei Yu, who helped found the Parents Association for Persons with Intellectual Disability (中華民國智障者家長總會), which supports the role of parents as both spokesperson and carer for those with disabilities, said that as a parent herself of a son, now a grown man, with an intellectual disability, said she felt strongly about the need to explore treatments that dealt with developmental delay at the very earliest stages.
“It was a great risk for us,” she said, but since the workshop has been announced, it has seen a huge response from mental health professionals and also from a number of parents.
McCullough said that in her experience working as an occupational therapist in Taipei, there was a huge demand for access to the latest thinking about treating children with intellectual disability.
“A lot of people really want more education, more workshops, more conferences to be held here. People lament that they have to spend so much money to get training, taking courses in the US, Hong Kong or Singapore … This also slows down the absorption of new ideas here,” she said.
For more information about participating in the workshop, visit the Foundation for Children with Developmental Delay Web site at www.fcdd.org.tw.