A Taste of Autism in the East | Special Education & IEP Advisor

There?s a hair roller stuck with a piece of Velcro to a piece of card on the wall. Alongside it is a separate strip of cardboard with a small card attached with Velcro, on which is a picture with the name of what?s on the image hand written underneath. These two strips of cardboard demarcate the gap between the least and most able students in this part of the autism school in Beijing, China.

I?ve taken a short, dusty walk from the original Stars and Rain autism school to this building which teaches around 6 students aged 13-18 at any one time. When I arrive there are only five students, four adolescent men and one female. Chinese Special Educational Needs teachers, who have little in-service training and still less status for their work, use TEACCH (the Treatment and Education of Autistic and Communication Related Handicapped Children) methods and visual timetabling to achieve goals and develop communication. On the day I visit, there are two teachers and three German volunteers whose internships program sees them stay for a year in the capital?s suburbs, working daily in the upper school and sleeping in local accommodation.

The teacher (li shuai), Peter, who shows me around, tells me how important it is for students to have the continuity of staff. The German volunteer, Mascha who helps with translation on my visit, is there for one year. Some volunteers only come for a matter of weeks, causing some level of distress to students when they leave. They arrive from all corners, from other Asian countries to Europe and Africa.? Germany has an on-going arrangement. The German Embassy is also highly supportive in terms of allowing fundraising activities to take place on its premises, splitting the funds raised among several local charities. Students at this school make jewellery, cards and other items to sell at the Christmas Bizarre but their output and the money gained are relatively small, so dividing the overall funds benefits the school.

Each room in this tight, three-floored building, has a separate function. This differentiation is important for students and forms part of the structure that is essential to their lives. The teaching room houses individual work stations, as one expects in classes in the West. One young man only recognises symbols, rather than words and images. The hair roller is for him and has nothing to do with hair fashion; it marks the first thing he must do for his next activity, sit down. Two young men used pictures to understand what to do next and one young woman and a young man were able to understand Chinese characters (writing). In this ?work? room students use the process of TEACCH to guide them through a series of activities such as stringing beads, making cards or screwing together nuts and bolts.

This element of finding a purpose for each individual seems more obvious in China than the West. In the UK certainly, leisure activities for our severely autistic population are seen as just a valuable as ?work? or being productive. We are privileged to live in an economy and society where severely disabled people don?t have to be employed and a social security system will give financial support. In the People?s Republic of China (PRC) levels of poverty dictate that all must earn or provide for themselves or their families. Nowhere is this more apparent than walking near major tourist attractions such as the Lama Temple, where I found myself among easily fifteen physically and mentally disabled people lying on the ground or being propped up behind a begging bowl.

Other school activities include a gym, where TEACCH again applies, guiding students to perform a set number of, say pull-ups on a piece of equipment, before they can place a card which indicates they?ve completed the task. The gym itself is rudimentary but it is posh compared with the relaxation room. The latter is a good example of making the utmost of a desperate lack of resources. Old fabric hung over a beam in what to westerners might seem a small and dingy room. Plastic had been wrapped around a lamp to dull its light and create a more soothing atmosphere. There were two large teddy bears and a cushion on the floor.? A CD player was used for soothing music. Although basic to foreigners, this room was a resourceful creation. It brought home how wasteful we often are and how unappreciative of the many facilities we have for our autistic children. What would be very little money to many of us, would transform even this small space of a relaxation room.

Each student has their own named set of crockery and cutlery, either named using Chinese characters, pictures or a symbol. The same applies to seating, such as the well-worn stools for the dining table. Cooking and food form a fundamental part of Chinese life and this is reflected in the daily cooking activities in the house. Students all participate, at various levels in preparing food for the oven. The day I went they had made cookies. Unfortunately something had gone wrong and most had been cremated, so the teacher was in the process of initiating another cookery experience to produce something that was edible!

Most of the students needed reinforcement of the activities of daily living, such as how to wash hands or brush teeth properly using pictures. Outside, there was a courtyard containing a donated basketball and net, a garden swing bench, a couple of couches and a disused billiard table. In the corner was a large rabbit in a small cage. Alongside the animal wasn?t green vegetables or a carrot but a bowl of cooked rice; I was told this was ?the Chinese way?. Indeed, this is true because rice is the most basic of foods which all Chinese can eat, even those most impoverished, whereas fresh fruit and vegetables are comparatively expensive and not to be frittered on a pet.

I return to the part of Stars and Rain school for pre-school children, where resources are best used by training the parents (usually mothers) how to communicate with their autistic offspring using Applied Behavioural Analysis (ABA). The school has a kitchen area, outdoor and indoor play equipment in good order. Parents spend 11 weeks at the school with their children, attending lectures by teachers and being shown how to use ABA. But this costs. They provide their own meals and accommodation. Only those with some money can benefit and they will have waited considerable time on a waiting list for a place.

Stars and Rain School, on the very Eastern edge of Beijing, was founded in 1993 by Tian Huiping whose western name is Hope (most Chinese have a western, chosen name). She is the mother of an autistic boy whose determination has seen the school develop from being the first non-governmental organisation for autism with meagre amenities to an established school with support for 3-6 year old children and a few 13-18 year old students. The expectation (or hope) is that these younger children will be given places at local mainstream schools.

Unfortunately there is great stigma attached to autism, especially the more severe end of the spectrum, and it can be seen as bringing shame on the family. School teachers are rarely trained in special educational needs (SEN) and the status of this area of work is low. Stars and Rain provide training conferences for Chinese teachers, which I attended this April. This is actively supported by the U.S. organisation ?Heartspring? which has an exchange program allowing specialised teachers, speech and language therapists and other staff to train Chinese staff.

However, Chinese Government policy at national and local level needs to change to embrace SEN and support these children and families to enable children to reach their highest potential. Teacher training and in-service training needs to equip mainstream teachers with the skills to accommodate autistic children in the classroom. Without this movement children on the autism spectrum will continue to be excluded from regular education and remain uneducated, abandoned or institutionalised. The process will be slow and, I would say, can only happen from inside. As China continues its path of industrialisation and economic development, she will feel the pressure of opinion from the rest of the world and from her own citizens to address the needs of the less able, whether this is autism, other special educational needs or other vulnerable groups.

For more information about Stars and Rain School or to volunteer, see: www.autismchina.org

and for Heartspring see: www.heartspring.org

Kate E. Reynolds is an autism mother and author. She blogs and answers parents? question at:?www.autismagonyaunt.com

Kate?s next book ?Sexuality and Severe Autism: a practical guide for parents, caregivers and health educators? will be published in September 2013 by Jessica Kingsley Publishers.

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