-By Ms. Antara Dey Chowdhury (BCaBa, Program Manager – Training & Development at Drishti.)
Dear reader, it has been months(years actually. This post has been sitting as draft since 2014) since my last post. And yes, I have been missing in action!! How can you not be in action when Autism has found you??
Well,I have been busy with my new-found professional commitments. I am studying to become an Assistant Applied Behavior Analyst***. And there is much change in our lives because of how I can now work with my son. I am keeping this very practical, albeit at the cost of sounding dry and heartless, may be!
But when a child is diagnosed with a disease/condition without a definite cure, Autism, in this case, what do the parents do? I have heard a plethora of answers, from bizzare to bold to purely emotional and sans all logic and wisdom. And that is ok, at the beginning. But as a parent, you are never too early, or too late to draw up your “to do” list, for the sake of your child.
And I will share with you how I went about drawing up mine. And I still review and re do it!
A good place to start may be an assessment, so you know how much your child is lagging behind, in terms of milestones and IQ.
And once you have it, please do not sit gazing at it in disbelief, disapproval or get overwhelmed. You’d save yourself precious energy!
Now that you know the distance and/or direction you need to catch up/go, you must grab your notepad.
1. Independence- and when I say this, I mean, how independently can your child live, in the real world? My primary focus has always been to make my son as independent as he can manage to be. And my aim is to secure for him a life where he is not dependent on others for activities of daily living. So, skills like brushing own teeth, toiletting, bathing, dressing up, eating are all must-have. A good repertoire of self-help skills will allow the children to live with dignity, once they are adults.
2. Play and leisure skills- and for the uninitiated, I am not talking about our kids playing games professionally!! All I mean to say is that it is very difficult for many children on the Autism spectrum to meaningfully engage themselves, when they are on their own. They require attention even when you want them to play, because many of them do not know how to play!! They lack imagination and imitation skills and hence, do not learn to play appropriately with most of their toys/games. It will make life better both for parents and the child if he/she could be taught to play meaningfully with at least a few toys/games to begin with. Something as simple as a car, a teddy bear, a spinning top, or games on iPads, etc can be taught without much difficulty.
3. Communication- not necessarily verbal, though! I have, more often than not, been told that my focus should be on “teaching my son to speak”. But my understanding on the issue makes me do things that teach him to communicate, verbally or not. Many Autistic children can communicate verbally whereas many can not. And till verbal communication emerges, the child must have means of communication like signs, devices, etc. Please try to understand that giving communication is important for your child to be happy and functional. So, work with your therapist/consultant, etc and find out how you can teach your child to communicate, verbally or therwise.
4. Increase participation- your child will need to learn the ways of life. And the sooner you involve them in activities in and around the house, the more opportunities the child will have to learn things without much extra effort. Take them to the grocery store, let them help you with laundry. teach them to put away the dishes, make beds…….any thing and everything that you do, can be taught to your child. And all for his/her own sake. It will teach them essential things and keep them engaged meaningfully without interfering with your schedule. But please be patient. Remember, you are the teacher here and you want your student to be happy to learn!
5. Choose an intervention after thorough research- Each child is different from the other. So, what works for one has rather slim chances of working for another. The success of the plan will depend on many factors. More about that in the next post. Until then, please remember that TIME is of essence. You don’t want to do trial and error and lose your child’s precious time!
PS: *** I had started this post in 2014 when I was pursuing my course in Applied Behavior Analysis. I became a Board Certified Assistant Behavior Analyst in 2016 and have been working in the field of Autism.