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     Volume 4 Issue 70 | November 11, 2005 |

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Special Feature

Aadil's Grand Day Out

A True Account from the Diary
of a Mother of an Autistic Child

Dr Leedy Hoque

Thursday, September 29, 2005
Today, I really feel on top of the world.
You may wonder : Autism - a diagnosis that casts a shadow, devastating so many families.
How can a mother of an autistic child feel ecstatic about anything?

Aadil, doing what he loves to do the best; paint.

I am about to explain.
Aadil, my 15-year-old autistic son was off school today because of a scheduled birthday party. Had he attended he would have been exposed to food he is sensitive to : artificial colour, refined sugar and wheat products all make him hyperactive and aggressive.

On days Aadil misses school because of a party,I try to arrange an outing. Aadil drew up his own schedule today:
1. Breakfast
2. Shower
3. Nisho Khala's house to pick her up.(My cousin, Dr. Nusrat Yasmeen Ahmed)
4. Shilpangan Gallery
5. Rifles Square for:
a) buying a Mozart audio CD from Western Craze
b) meal at Helvetia c) shopping at Agora for juice, apples and milk (for Nanu)

I added the following message (Being a visual learner it is easier for Aadil to follow a written message rather than a verbal one ):

  • Be calm Aadil
  • When outdoors no jumping,"howling and growling". You can have time to do this when we return. (Aadil craves sensory stimulation in the form of running, swinging, rocking, jumping and making loud noises).
  • At 12pm the car will leave to collect Dad. We can come back home by rickshaw if we finish after 12 pm.( I try to prepare him for all possible changes).
  • We will have a wonderful, grand day out!
Breakfast was over in a flash. His face was beaming with excitement and he went off for his shower without requiring a single prompt from me ( the beauty and power of motivation!)

You may be surprised to know this, but it took me nearly two years to teach him how to shower by himself. When he was ten I started with drills on parts of his body, left and right orientation, then gradually introduced the use of soap and shampoo. It was difficult for Aadil because like so many other autistic people he has a minimum concept of self of "me", "my" body, and where "my" limbs are in relation to the rest of "my" body . Today Aadil showered by himself. Sometimes Aadil forgets to dress after a shower. He doesn't do this to shock or annoy anyone. It is simply because of his autism he cannot anticipate or appreciate what others might think of his own actions. Today for a change Aadil put his clothes on without any prompt. But standing at the top of the stairs, he began to shout "Button off! Button off!" I could see he was in a fix but I wanted him to help himself. So I gave him a set of instructions which he followed to the hilt. I felt so proud of him as he overcame his difficulty in coordinating his fingers and hands. I wrote the following note :

  • Aadil you did a fantastic job at dressing today.
  • You asked for help when your head got stuck.
  • You listened to instructions. You took off your panjabi.
  • You waited calmly as Ammu showed you how to take the button through the loop.
  • You unfastened the button very patiently.It was difficult, but you did not get upset.
  • You put on the panjabi again and fastened the button.
  • Well done Aadil !
  • You look very smart indeed!
  • Aadil proudly announced "I am wearing a panjabi,a Muslim shirt !"

    I really did have a very smart looking boy accompanying me as we made our way to my cousin Nisho's apartment overlooking the lake. He dashed around inspecting all the windows to check that they were closed properly.( Did he feel insecure with them being half open ? ) He then inspected the rows of shoes by the door(this is very typical of Aadil). He finally settled in front of the TV and would have sat there for hours had it not been for my countdown: "Aadil, we'll soon be going to the gallery. Five more minutes…two more minutes..one more minute…time to go!"

    Aadil was so excited as we entered the Shilpangan Gallery. He absolutely loves visiting galleries and museums. In fact he loves to paint himself and he was so looking forward to seeing the paintings of his favourite artist Hamiduzzaman Khan, now on display at Shilpangan.( Back in 2003 while Aadil was drawing in his sketch pad at this very gallery he met and struck up a beautiful friendship with Hamiduzzaman Khan). So it was a great disappointment when we found the gallery plunged into darkness due to power failure .It is to Aadil's credit that he kept calm(in the past such a situation would invariably lead to an explosive outburst).He quickly whizzed around the gallery, I'm sure to check that all the paintings were still there.

    Aadil, after winning the gold medal for his water colour 'Golden Cleopatra'.

    Another disappointment awaited Aadil at Rifles' Square: Western Craze had it's shutters down. However, Aadil managed to find the lone CD shop that was open. He showed a keen interest in the 3 CD set of Tintin's Adventures( I made a mental note: this might come in very handy in the future as a motivator or reward). I reminded Aadil that his original plan was to buy a Mozart audio CD. Aadil came away very happy, commenting he would listen to Mozart in the evening when he has his 'computer time'. Both Nisho and I praised him for his behaviour,as we descended the escalator for our next stop: Helvetia.

    At the fast food restaurant Helvetia Aadil made his choice: 2 glasses of juice, fish fillet and also chicken broast! While we waited, the three of us got engaged in a word game when Aadil suddenly announced "Ammu,I want to go to Cairo!"I replied "Inshallah!" He asked "Inshallah meaning?" I replied "God willing" and wrote in my note book : "God + willing=Inshallah". Nisho explained that Allah meant God and "insha" meant willing. I added, "It's like the word brunch, a very American thing to do." I then scribbled: "breakfast +lunch = brunch."Aadil was fascinated by all this and concluded "Helvetia is an American restaurant!"It felt just great, all three of us enjoying each other's company.

    When the food arrived Aadil picked up his cutlery and began to cut the fish into neat strips. I was amazed.It has always been so difficult for him to press into the fish with a fork in one hand while maneuvering a knife in the other. He did it so skilfully Nisho and I praised him profusely. He was obviously in his element, thoroughly enjoying himself. Over coffee Nisho and I discussed how important it was for every autistic child, whether at home or at school, to have at least somebody who could "tune in" to the child(in Nisho's words "mind-read" the child) and act as a bridge or interpreter for that particular child. We also talked about how one had to develop a resistance, almost a "second skin"so that the constant glares of onlookers would matter no more. All that mattered was that Aadil was having the time of his life and we were so lucky to be there with him.

    Before we knew it,the morning had slipped away.We had just enough time for a quick dash to Agora, where Aadil collected a trolley, chose a carton of pure grape juice, some apples and finally milk for Nanu. When we came out I noticed we had 15 minutes in hand before the clock struck 12. I told Aadil that as he missed out on the Shilpangan Gallery that morning, we could squeeze a very quick visit to Bengal Gallery, another of Aadil's favourite places. Aadil had a quick look around the exhibition stopping at the reception for a copy of the exhibition brochure and a CD of Tagore songs.

    We finally arrived home just after 12pm. Aadil grabbed his book "Nefertiti and Cleopatra" but within a few minutes he fell fast asleep. As I watched him resting peacefully I gave thanks to God for such a spirit lifting morning: We truly had a grand day out!

    AUTISM is a developmental disorder affecting a person's ability for social interaction and social communication. Lack of or poorly developed speech, echolalia (repeating what other people say),poor eye contact, hyperactivity, short attention span are very common features. Resistance to changes, finding it difficult to start or stop an activity and difficulty in coping with transitions (moving from one activity to another) or abrupt changes are found in many autistic people. Repetitive "stereotypic" behaviour tendencies (eg twirling or spinning an object) and keen interest in one particular topic or activity to the exclusion of all else are hallmarks of autism. Some may have self injurious(biting own hand),aggressive(attacking other people or breaking objects) or antisocial (spitting on others) behaviour.

    No two autistic individuals are alike as the symptoms can occur in any combination in varying degrees of severity. The term " Autistic Spectrum Disorder" (ASD ) is used to cover this wide range of symptoms and severity from the high functioning mild end (Asperger's Syndrome) to the more severe form of autism.

    Autistic people often have associated sensory integration and sensory-motor problems. This may manifest in numerous ways eg visual perception problems, auditory (hearing) hypersensitivity, tactile(touch) sensitivity, problems with vestibular pathways affecting coordination and balance, and proprioception (joint position sense). At a workshop in Surrey , UK the author heard Temple Grandin (a renowned autistic writer and academic in the veterinary sciences) describe how she needs to wear her undergarments inside out because the stiff tags and seams cause such discomfort. As a child she recalls the sound of a school bell being as painful as a dentist drilling a tooth without anaesthesia.

    An important point to bear in mind is the dissociation of physical sensation from awareness of physical needs. A child may feel hunger pangs but not realise the way to deal with it is to eat food. As the hunger increases the child gets more and more distressed. This can easily lead to a tantrum . In the same way feeling of fullness of the bladder or the bowel may not translate into the need to go to the toilet. At meetings of the Oxfordshire and Berkshire Autistic Societies that the author attended Donna Williams ( famous for her autobiography and other publications ) lectured about sensory and dietary issues in autistic people. Donna described how she put a yellow tape on the floor from her bed to the toilet to remind herself where she needed to go if she felt bladder fullness. She also stressed the fact that many autistic people including herself cannot process multiple sensory stimuli at the same time . Like many others she is a visual learner ie. she cannot process visual and auditory stimuli simultaneously because of the problems of sensory integration.

    All the symptoms and features mentioned above may occur inspite of the person having an average or even above average intelligence. Autistic children are normal looking, often attractive to look at. They are easily mistaken to be "unruly" or "naughty" and their parents deemed guilty of poor parenting skills. Nothing could be further from the truth.

    It is difficult for anyone who hasn't had a first hand experience of this to realise the emotional and\or physical trauma that the family, in particular the siblings have to endure. In looking after the autistic child, many parents have no reserve energy to nuture their own relationship or fully attend to the needs and desires of their other children. Some parents cannot withstand the stress, so marital discord sadly occurs in these families, making the situation all the more difficult for everyone concerned, especially the autistic child. This is why it is imperative that these parents, siblings and autistic children get all the support they can from other family members, family friends, educational institutions, social services and healthcare professionals.

    Aadil's paintings often depict ancient Egyptian culture.

    Nothing comes naturally to the autistic child. Basic skills (how to play with toys) that develop spontaneously in the normal child have to be painstakenly taught to the autistic child.It is often difficult to even know how to teach such skills which we pick up spontaneously. Both home and school must be the child's learning environment. However, the environment must not be one of pressure, demands or expectations. This only breeds a sense of frustration or failure in the child, parents and teachers. The environment must be one of acceptance, understanding and uncritical love using motivation(from the child's point of view) to take each step. Intervention must be offered as soon as possible for as long as possible.

    The child may display behaviour that is shocking, annoying or unacceptable. This must be dealt with in a calm, non-reactive manner. Any reaction from our part only adds fuel to a difficult situation. Threatening the child or instilling fear in the child in order to alter a certain behaviour must be avoided at all costs.

    Compliance is obviously necessary to help the child integrate into society. However our main focus must be to build and maintain the child's trust. Parents and teachers must ensure that the child finds the environment comfortable eg a child pressing both ears with his or her hands in a party is obviously suffering from auditory hypersensitivity and simply taking the child to a quieter place will relieve the discomfort. Fun and a sense of purpose are to be the main ingredients of the child's education. For parents and teachers alike, what motivates the child must be our guiding light. If the child is totally absorbed with a length of string, why not join him in his world? Eventually, when the child can trust us and is ready, he or she just might take our offering hand.

    Most importantly, we must respect and honour the child whether he or she chooses to remain in their own sensory world or chooses to take that first step into the world beyond. There is beauty in both worlds.

    Finally, a few words regarding Aadil:
    Aadil, at the age of 7 was extremely hyperactive with aggressive behaviour that was very difficult to control. He had some language, but could not use it to communicate. Since then he has emerged to be a talented artist and avoracious reader with an encyclopaedic knowledge of Ancient Egypt amongst many other areas of interest. He is very excited about his forthcoming solo art exhibition (his second solo exhibition in Bangladesh) at the Bengal Gallery between 18th to 24th December 2005.

    It was a trip taken by Aadil and his parents to the Option Institute in Massachusetts USA for a two week "Son-Rise"training programme in the summer of 1996,soon followed by Aadil's "discovery" of Ancient Egypt in a history atlas that played a key role in making the breakthrough where by he learned to speak communicatively, read, write and draw.

    Between the ages of 7 to10 Aadil received intensive stimulation from a team of teachers in a home-based educational and therapeutic programme run by his mother in Oxford, UK. The programme received support from the Oxfordshire Local Education Authority as well as Social Services and was monitored by Richard Brooks ,Deputy Head, Oxfordshire Services for Autism. Aadil's home-based programme began with the Option approach of entering his world by following or imitating him. Gradually it evolved into a much more structured programme, but always centered on Aadil's interests and needs.

    In 2000 Aadil returned to Bangladesh from England with his mother, sister and grandmother(without whose support it would have been impossible for his mother to have set up his programme)

    At present Aadil attends Dhaka Autistic Centre where he has the opportunity to be amongst other children, something he could not tolerate a few years ago. School provides the crucial structure or routine that all autistic individuals benefit from. Aadil's social skills have improved considerably in the school environment.

    Aadil still requires a lot of help and encouragement in the areas of communication, interaction, behaviour management and daily life skills. As yet he hasn't mastered toilet skills mainly because of the difficulty in joint position sense and visual perception. Another current issue is his fear of lightning and thunder making him want to flee and hide in the bathroom(auditory hypersensitivity lies at the core of this behaviour). Physical illness (he suffers from severe migranes) or changes in his routine (his favourite TV programme taken off the air) can cause a breakdown in his control over his own behaviour; leading to increased hyperactivity, hand biting and aggression. At such times one has to revert to an "Option" approach and give him as much support as possible until the crisis is over. At home his mother continues to work with Aadil in all these areas, round the clock. Everyday he continues to make slow but steady progress.

    On 3rdOctober 2005 Aadil received a gold medal from the Prime Minister of Bangladesh Begum Khaleda Zia. The award was given for his water colour painting entitled "Golden Cleopatra" in the international art competition" Egypt in the Eyes of the World's Children" sponsored by the Egyptian Ministry of Culture in 2003.


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