Of Earthworms and Ice-cream
Helping the Autistic Child
Dr. Leedy Hoque
On the topic of outings initially be selective about where and when you take your child out. I still do an "investigative run" first e.g. when Aadil recently wanted to buy a Pokemon t-shirt for his cousin, I went round the malls to find where it was available. I had briefly explained to the shop keeper about Aadil and he was allowed ample time to make his choice in spite of the queue behind us. Incorporate regular walks in your child's schedule with opportunity to run and jump freely. When visiting family and friends, shops, restaurants, etc make sure the environment is friendly and accepting with people aware of your child's needs.
Try to build up a network of support beyond the confines of home. Aadil is blessed by the loving support he has been given by individuals such as Hamiduzzaman Khan, eminent sculptor and artist and his wife Ivy Zaman, Ismat Jahan (a family friend, now ambassador to the Netherlands), Luva Nahid Choudhury (director of Bengal Foundation), staff of various galleries and museums in Bangladesh and members of the media especially the Star Weekend team who recently treated Aadil to an evening he will never forget-- the Daily Star's 15th birthday celebrations at the Bangladesh-China Friendship Centre.
Aadil at the British Council Library
Do be vigilant in picking up any other concurrent physical problems your child may have - e.g. infections or pain can easily precipitate tantrums and poor eye sight or hearing will obviously aggravate the child's difficulty in communication. When Aadil was eight, we suspected he was short sighted. However a visit to an eye specialist dealing with special needs children proved disastrous. Assessing the vision of an autistic child is difficult but slapping on an eye patch without warning was altogether too much for Aadil, and he could not concentrate on the eye chart. The verdict: Aadil's eyesight was perfect and any difficulty we perceived was due to lack of concentration and behavioural problems. Not convinced I asked my doctor for a second opinion this time at the eye department at the Radcliffe Infirmary. We had much better luck with the doctors, nurses and his teachers taking their time to explain each step to him. He was found to be severely short-sighted.
The day came to collect his glasses. Aadil was very anxious, almost fearful to put the glasses on. I said "Don't worry; I'll keep your glasses in my bag. You can try them on later." I didn't need to wait long. On our way back home, I suddenly stopped in my tracks and pointed to the pavement asking "Aadil, what is that?" Aadil bent over, strained his eyes and said "Stick!" I continued: "Try again, this time with your glasses." He immediately accepted his glasses, looking again and beamed with delight as he gave the correct response "Earthworm!" Since that moment his glasses have been his constant companion. I sincerely believe his communication would have been significantly hampered further had his short-sightedness not been corrected.
Beware of the multiple sensory problems that most autistic children and adults suffer from. Touch, hearing, smell, visual perception, balance and co-ordination, and joint position sense are all areas that can be affected. This is why activities of daily life e.g. dressing, feeding, going to the toilet, even playing on the playground are so difficult for so many. The problems can fluctuate on a day to day basis. The child may find a certain garment uncomfortable (stiff collars, labels and seams are often the reason). Give the child freedom of choice rather than forcing them to tolerate what is causing them discomfort. The child may find a noisy gathering (e.g. birthday party) overwhelming. They may scream and press their ears due to hearing hypersensitivity. Recognising this, offer relief (simply remove the child to a quiet environment,) rather than forcing the child to comply.
One day at Aadil's exhibition at the Bengal Gallery, I noticed an autistic child pressing his ears, looking very anxious. I immediately requested at the reception to reduce the volume of the music being played (Aadil's personal choice of opera music); at which the child's mother (who happened to be a teacher at Aadil's school) appeared mortified and apologised profusely saying her child always covered his ears and did it out of habit. I reassured her that the sound was probably bothering him. As the volume was lowered, the child immediately took his hands off his ears; he became much calmer and began to be playful. Many of our children will jump, run or babble continuously and may be hyperactive with little or no concentration. These are signs of sensory processing problems. If you feel there is a problem, act on it now rather than later. Seek the advice of a qualified occupational therapist with experience in sensory processing and integration problems, with a good understanding of autism. As for Aadil, he is receiving input from such a therapist. In addition I have structured his environment to accommodate his multi-sensory needs and interests. The furniture in our living room is very lightweight, so can be pushed aside for him to run and jump. There is an indoor swing for him, a trampoline and just recently a large therapy ball which Aadil loves to sit and bounce on (previously he would do this on our sofa). This has a calming effect. In addition to this there are a number of well demarcated areas in the living room, where he has instant access to his interests and pursuits e.g. his home library, his music corner and studio with all his art materials.
Address your child or student's fears and anxieties as best as you can, supporting long term solutions in favour of short term ones. Aadil's prime source of fear is that of storms: thunder (due to auditory hypersensitivity) and lightning (fear it will burn the house down he still remembers the story of Anton's friend's house being struck by lightning). In addition to constantly reassuring him, Shaoli and I have drawn and written stories and read to him about these phenomena. Once when he was 15, I spent the whole night singing to him "We shall overcome…" and its Bangla version "Amra korbo joi…" as he hid in the bathroom until he calmed down sufficiently to open the door and come out. He is now allowed to take a shower or to wrap himself in a thick quilt whenever there's a storm. (I have to turn the AC on avoid him overheating).
There is much evidence that diet is a major factor in the management of some, but not all autistic people. Donna Williams and Luke Jackson are autistic individuals who have written and spoken about how much they have benefited by being on a gluten and casein free diet. It is thought that gluten and casein are only partially metabolised in individuals who are sensitive. The metabolites leak from the gut, crossing the blood brain barrier to affect the brain in much the same manner as opiates, hence the behavioural disturbances. Donna also requires mineral supplements, especially magnesium without which she becomes very agitated. In her own words "I'm not brain damaged, I'm brain affected," (meeting of Berkshire Autistic Society I attended). You may want to find out about milk (casein) and wheat (gluten) free diets. Also: sugar, preservatives, additives e.g. artificial food colours or MSG (monosodium glutamate or 'testing/tasting salt') can cause hyperactivity and aggressiveness in many autistic people (even non-autistic people can be affected by the same). I have to be very careful about what Aadil eats: he is not allowed any food containing wheat, milk, sugar, artificial food colours or MSG. Aadil is also on a range of supplements to balance a deficiency in a number of trace elements (detected on a blood test when Aadil was seven). Aadil loves to dine in restaurants; I always make sure that the food we order for him does not contain ingredients he is sensitive to.
Eventually when the time comes for your child to enter school i.e. he/she is ready for a more structured environment, make sure you keep close contact with teachers and staff. Whatever method the school uses (e.g. TEACH or ABA) make sure parents and teachers are in agreement with targets/goals and approaches. Most schools provide a diary, enabling parents and teachers to share information and develop plans to assist the child's progress. The information that is exchanged must include both positive points as well as any problematic areas. The positive aspects can be encouraged both at home and school. Problem areas are to be addressed and approached in a consistent manner by parents and teachers alike. At school, Aadil previously had problems in settling in the vocational class, but now he has interest as the opportunity is given to paint Egyptian pictures on t-shirts.
In conclusion, my request to you is this: educate yourself and educate others. Most importantly keep a positive attitude. If you have a rough day at home or school, allow yourself to have a moan, but don't waste too much time on self-pity. Tell yourself that your child or student, at present, has no other way of behaving or expressing themselves. You, as parents, are in the best position to help your child and your child will progress with your patience, effort and devotion. Your own instincts, acceptance and understanding will be the guiding force to ensure a beautiful today and better tomorrow for your child.
(R) thedailystar.net 2006