Taking Care of an Autistic Child
In this article I would like to share some tips for parents of an autistic child. As parents, we hold the key to our children's future. Much of this can also be applied by teachers in the school setting.
First of all, to parents of newly diagnosed autistic children, my message is this: the diagnosis of autism, especially in your own child is a hard medicine to swallow. Devastated and bewildered, parents and families are hurled into an abyss. What do we do now? Where do we go for help? How do we start helping our child? What have we done to deserve this? Why me? Why us? Why our child? Anger, confusion, fear of the unknown, having to let go of all those dreams and hopes-these are the feelings we have all experienced. However, my ardent request to you is this: At least, and at last, you have a diagnosis for your child. Make use of this. Don't fight or resent your child's autism. Instead, work with your child's autism; learn about it. For me personally, in spite of profound sorrow and uncertainty, I was relieved to know what Aadil was suffering from. At last I had a diagnosis, so I could find out about it and try to help him.
Another extremely important point is this: no matter how utterly shocked and sad you maybe feeling, don't blame yourself or your partner. In some cases, autism maybe genetically linked, but blaming or pointing out whose side is responsible serves no purpose whatsoever and this self-destructive attitude can potentially tear families apart. You have a long journey ahead of you and will need a lot of support. So stand united--and this is important not just for the parents but the whole family --siblings, grandparents, etc.
To help our child, we must examine ourselves first. We cannot truly move forward without accepting our child and our child's autism. We must truly believe and be able to say to them, "You are beautiful as you are and in what you do because that is the only way you know how." Being in denial and rejecting or overlooking the problem, thinking it will improve automatically will only mean valuable time being lost.
Acceptance is the starting point. Following that comes understanding, made possible by educating ourselves. There is so much information available now: books written by professionals working in the field, autobiographies of autistic people, numerous websites, workshops, the media, information we can share and gather from other parents and professionals (e.g. teachers, occupational therapists dealing with sensory processing problems, speech therapists, psychologists, physicians and dieticians).
Once we can understand what lies at the core of our child's difficulties, we can try to find a way to help. The list is endless and choosing what to try is difficult. Some approaches will help all autistic individuals e.g. providing structure and routine, whereas other approaches e.g. dietary restrictions or sensory therapy may help some more than others. Often what we as parents or teachers perceive as a problem, is not considered a problem to the child. To give you an example: Aadil playing with his "paper horse" (a twisted piece of paper) may, in some people's view be regarded as inappropriate behaviour. To me however, it is no problem whatsoever; on the contrary his "paper horse" gives him much needed security and comfort. I still use his "paper horse" as a motivation or reward if he completes a certain task or activity.
I suggest to parents and teachers of autistic children - spend time to observe and ascertain what your child likes or dislikes. If yours has no obvious or apparent interest or fascination, just join your child, imitating him and be comfortable and happy in giving your child your companionship.
You never know: while you are joining in, be it jumping, spinning, flapping fingers or babbling, your child just might give you his first look, or smile at you. Gradually and without any pressure, offer other activities from time to time. Autistic children are often visual learners and will be attracted to pictures, books or photographs. Many enjoy music, songs and rhymes. Some may find blowing bubbles, playing with sand or water very enjoyable. Often they will not pay any attention when you first introduce a new activity, toy or book. However, at a later date they may seek out the very same. Praise your child for any attempt to communicate, be it eye contact, speech or gesture.
Speak to your child in simple language. Break down complex commands into a simple sequence, especially when the child is not able to concentrate. Do not expect a child to answer questions promptly; in fact considerable time is needed to process information. Sometimes questions rephrased to a sentence format is easier for the autistic child to handle e.g. rather than asking "What is the weather like today?" rephrase it by saying "Today the weather is…" pause and let your child 'fill in the blank.'
The issue of whether to use just Bangla or English or both whilst speaking, reading or writing is often brought up. I personally try not to mix Bangla and English with Aadil, and his teachers have been requested to communicate with him in English. Recently he has shown interest in knowing the meaning of spoken Bangla, or Bangla songs so I am hopeful he will also gradually be able to understand and converse in Bangla.
One has to be cautious regarding television and computers to which children, autistic or non-autistic can become addicted. The main risk for the autistic, child is excess exposure to TV and computers, reducing opportunity and time for interaction and development of communicative skills. Simply keeping the TV and computer locked in a room and allowing limited access is what I still apply in Aadil's case. A regular slot is allocated in his daily schedule.
Help your child become familiar with objects (e.g. clothes, food, furniture, toys, etc.) people and places. Taking photographs and placing them in albums with the accompanying written word in what we practiced with Aadil, in addition to simple cards with pictures of various activities. Flashcards with photographs of everyday objects are commercially available, but one can make these at home which are probably easier for the child to recognise.
Having a structure or routine helps autistic children tremendously. Initially, use pictures (preferably photographs) with written captions for each activity. To this day I have lists for Aadil of weekday and weekend schedules on our wall, which I find invaluable. In addition to schedules, Aadil has his own calendar where we note outings, birthdays, holidays, school dates, rewards for good behaviour (he is on such a scheme at the moment) etc. Keep in mind, our children need a lot of preparation and extra time must be allowed for starting or moving onto a new activity. Changes to the routine must be explained in advance.
One has to be careful about the issue of control. This must be shared between the child and parent (likewise between student and teacher at school). Total control by the child will cause extreme stress and fatigue of the parents. On the other hand, total control by the parents over the child will cause unbearable stress to the child. Setting down a few rules is a way of establishing a balance, e.g. "Eat your food at the table. No running around at mealtimes. You can run around after you finish your meal." Your child may at first resist and not like it. However be patient and emotionally detached. I tend to say "It's not my rule, it's the education minister's rule," or "It's an international rule". Above all, be consistent. No good will result if another family member comes up saying, "What's the harm in him running around as he eats?" It is not easy, but prior discussion with all the family members, carers and teachers, with everybody keeping consistent and calm helps in establishing these rules. Remember: routine and rules invariably provide security. The autistic child does not have the essential ingredients for e.g. motor planning, imagination and social skills or concept of time to enable him to self-structure or 'work out' what to do with his own time.
Another important issue is how to deal with tantrums or aggressive behaviour. If your child throws tantrums for toys or food; don't give it straight away to quieten or pacify your child. He will then learn that by throwing a tantrum he can get what he wants. It is of paramount importance that you keep calm. It is very difficult to remain non-reactive, but you must train yourself. Attend to the immediate problem e.g. I say "Aadil, hands down," or "hands off hair." Reassure your child e.g. "I know it is difficult for you, but I am here to help." Only after the child calms down can you give him the desired object or food. There is no point in educating the child while the tantrum is in progress. Remember, communication often fails when your child needs it the most, even though he may be verbal. After the tantrum subsides explain in simple words that he can ask or show (have a picture board of favourite foods, toys, places, etc for the non-verbal child) what he wants, rather than tantrum. If the cause of the tantrum is not clear, rule out any physical illness or sensory stimulation causing fear, anxiety, discomfort or pain. Consequences may be given e.g. in Aadil's case, on days he is aggressive he has reduced TV and computer time in the evening. In choosing a consequence, I tend to match the most problematic behaviour with what motivates Aadil the most.
Work constantly on helping your child develop ways to communicate, whether verbal or non-verbal. I keep urging parents to try their utmost in getting their autistic child to read as many are visual learners. Once a child is able to read you can prepare your child for all eventualities simply by writing messages, rules, etc, to reinforce what you are talking about. The written word is much easier to process than a verbal message. As communication improves, you will find that tantrums become less frequent and prolonged. Aadil learned to read at around 7 years. We began with Dr. Seuss' "Cat in the Hat" series. Subsequently when he became interested in Egypt, his reading skills rapidly progressed. He is an avid reader with a vast collection of books at home on various topics. He loves going to the British Council library (now incorporated into his weekly schedule). He also wakes up to the culture page of the Daily Star every morning and scans all the exhibitions and programmes on. Accordingly he makes his own plans to visit galleries or museums which I offer him as much as possible. Wherever we go I keep a notebook and pencil in case I need to convey any messages to him.
To be continued next week
(R) thedailystar.net 2006