Of Earthworms and Ice-cream
Helping the Autistic Child
Dr. Leedy Hoque
Since my son Aadil Hoque's recent solo art exhibition at the Bengal Gallery, I have been approached by many anxious parents of other autistic children expressing this concern: how to reach out and communicate with their children. It was their concern that urged me to convey some of my thoughts and suggestions on this topic, drawing from personal experiences with my son. Aadil has gradually emerged from being a non-communicative, extremely hyperactive and aggressive child at seven, to one now at the age of sixteen who is able to express his wants and needs; has diverse interests including music, reading and art and seems comfortable in his environment and enjoying life. The hyperactivity, anxiety and aggression persist to this day, but are considerably less than in previous years.
A Way Forward: Our Family's Experience at the Option Institute, Massachusetts, USA. August 1996.
The year 1996 was indeed a turning point in our lives. At the time I was living in Oxford, UK with my mother, my daughter Shaoli (aged 8) and Aadil (then aged 6). I had left Bangladesh two years earlier due to the utter lack of support and no diagnosis for Aadil. When he was 5 years old, he was appointed a teacher, Judy Holdsworth, by the Oxford Local Education Authority. Judy worked with Aadil, at home, at the local autistic unit as well as at the mainstream primary school. In spite of all this support, Aadil's behavioural problems intensified. I had no way of dealing with his violent outbursts, often directed at Shaoli. I resorted to locking Shaoli in her room, even at mealtimes or sending her to spend some time with my brother Tipu's family nearby to give her a break from Aadil's relentless attacks. Out of sheer desperation I contacted the Option Institute for help and was offered a training programme for the summer.
This was to be our plan: my mother would be looking after Shaoli in my younger brother Timmy's apartment in New York City, while my husband (Professor Monimul Hoque, who for the first time in his life had taken leave from his demanding job as head of the Paediatric Department in Mymensingh Medical College) and I would take Aadil for the extended two-week Son-Rise training period. Following that my husband would return to Bangladesh, while my mother and I would return with the children back to Oxford.
Located in a tranquil setting, the Son-Rise house appeared most inviting with forest covered hills and a lake nearby. We arrived on a Sunday evening, as the programme was to commence the following day. We quickly settled in the top floor of a double storied unit, having a self-contained flat with cooking and dining facilities and a living room for meetings and discussions. Then there was the all-important playroom with its own attached bathroom. The playroom was to be Aadil's world during his waking hours. It was very carefully designed and simple. I was almost surprised that it looked so bare. No proper window to look out of. I quickly realised this was to minimise distraction and help the child focus on his teacher or whoever was playing with him. No carpet -- just a vinyl covering for the floor. This too was a great advantage for a child like Aadil, who at the time was not toilet trained and would often put his hands in his pants and smear faeces all over the floor. I observed that food and drink, toys, books, etc., were kept within view but out of reach on a shelf that ran the length of the playroom. I found a large mirror placed inside the playroom to be useful in encouraging Aadil to look at his teacher.
One side of the playroom had a large sheet of reflective glass that acted as a one-way window. Thus we could sit outside and observe Aadil with his teacher. Aadil on the other hand, would not be aware of us, for all he could see was his own reflection.
Aadil was assigned a group of teachers or "facilitators" (in Option jargon) who worked in rotation with him in the playroom from 9am to 5pm Monday to Friday. We had a variety of sessions scheduled each day, e.g. sessions where we observed Aadil playing with his teachers in the playroom. A senior member of the team (in our case mainly Jonathan Alderton) talked about effective techniques a we watched them being applied by his teacher. We took notes which we later discussed with the teacher in the presence of the senior member. This situation then reversed when my husband or I would play with Aadil in the playroom, with one of the staff members observing us, taking notes, and afterwards giving us feedback on our "hands-on" sessions. We also had numerous in-depth discussions with other senior staff, amongst them Barry and Susie Kaufman's daughter Bryn, on various topics related to the program.
Initially I was overwhelmed; my mind bombarded with serious doubts. Would I have the stamina, mentally and physically to set up such an intensive program on my own? Or find volunteers or staff and funding for the program and teaching materials? I also found it unnerving being observed and my "performance" commented on by other team members.
In spite of my worries, I was touched to the core by the whole Option approach -- one of unconditional love and acceptance of the child. I had to retrain myself in so many ways -- no more judging, no more expectation from him or myself. The fact that people were observing me soon mattered no more. Following Aadil into his world became not only easier but it was where I wanted to be, where I felt most comfortable. If he shredded paper, we did so too. When he twisted paper to make his "paper horse", (which he still does to this day), we were there making our own paper horses. Of course no one could do it as well as him!
While observing the others and working myself in the playroom, I picked up a few fundamental guidelines e.g. minimising the number of times you say "No!" to your child -- this automatically reduces tension and frustration. Try not to physically manipulate your child -- i.e. don't use physical force to push, pull or lift your child against their will (the exception being if the child or you are in imminent danger e.g. if the child dashes into the road you must act to ensure his or her safety). The playroom provided an optimum environment for both -- the child is totally safe in the playroom and is free to do what he or she likes. Another priority was praising the child. There was no demand for eye contact but every time Aadil did, whether directly or indirectly (via the mirror); heaps of praise would be showered upon him along with a big hug. (This approach of course is suitable if the child responds favourably to being praised and given hugs -- some children may find this difficult to tolerate so other ways are to be explored). Praise and hugs certainly seemed to work in Aadil's case.
To encourage communication and interaction in addition to imitating the child, one has to keep observing as to what motivates them. Anything the child gives a second glance should be accepted as a gift, a window of opportunity. By keeping what the child likes within view, but out of reach (as was keep on the shelf in the playroom), the child will feel motivated to ask, either verbally or by gestures. The main thing is to have fun and to enjoy your child. Combining fun with motivation, you are sure to have a child that will take that first step to reach out to you. Take these examples: As I mentioned earlier, the playroom was quite bare with very little in the way of furniture or other objects. However, in a moment, this playroom would be transformed like magic; Aadil's favourite "Cat in the Hat" book (Aadil couldn't read at that age, but loved to hear me read) was brought to life by Jonathan Levy who came to the playroom one day dressed up as the Cat in the Hat! Or take the example of Virginia who realised Aadil was fascinated by volcanoes. No problem! She just rearranged bits of furniture in the middle of it, hurling all the soft toys she could find helter-skelter! Aadil was squealing with delight at the sight of his own playroom volcano! His happiness was a gift to us all.
A lot of effort went into showing Aadil that language worked for him; not just to please us but that he could gain from communicating with us. If something was wanted, he could show us or tell us rather than go into a tantrum. We focused on two words: "I want." Tears came to my eyes one day as I observed Virginia and Aadil in the playroom. Virginia sensed Aadil was keen to have an apple he could see on the shelf. Ever so patiently, she gently prompted him saying "I..." holding back until he uttered "I want apple." Swiftly she brought the apple, held it for a second in line between her eyes and his eyes (thereby grabbing an opportunity for him to look at her) and exclaimed "Good talking! Good looking! Good boy Aadil!" What a hug she gave him!
Imagine my surprise a few days later (end of week one) and I still remember that moment so clearly: I was busy in the kitchen cutting up onions and vegetables, preparing the evening meal, when Aadil came up to me and with no hesitation spoke these words "I want ice-cream!" looking at me directly. I nearly fainted -- it was as if I saw his eyes for the first time in my life. I knew he had spoken and looked at me -- but I was shaking and trembling with disbelief. I cried as I hugged him. I would have given him a truckload of ice-cream if I could, but instead I gave him something much more: I decided then and there that yes! I was going back to Oxford to set up a home-based program for him, no matter what the cost in terms of time, effort or money. I was a decision that would change our lives forever. We had finally found a way forward.
(R) thedailystar.net 2006