Knowledge is power
I have been working as a consultant pediatrician and expert in autism for almost past 15 years. Still, there are many unanswered questions on how and why, and each day I learn more. But still, there are many things that cannot be understood and explained completely. Books are helpful but being with children and their parents makes your understanding and perspective totally different. I come across parents with children with autism almost every day. Parents whose children are already in adulthood and have been diagnosed for more than 20 years, had accepted and are now tired. Parents whose children were diagnosed maybe 3 or 4 years ago and still struggling to understand and in a state of confusion. Newly diagnosed parents of 2 -3 years old children are in a state of anger and denial. Whenever I come across these parents, I always wonder how the parents can get help so that they are less tired and less confused, and accept it early.
“ Knowledge is power”. This was proven true repeatedly; a simple example is during COVID time. During the first wave when there was very little knowledge of COVID and its treatment, people were scared to death and a single case made the country stand still. But as time passed and during the second and third wave, people knew better about COVID infection and treatment, so they were less confused and afraid. So why cannot it be true with autism? I wish all parents can understand their kids and increase their understanding and knowledge of autism. Once autism is diagnosed, it is going to stay and not go anywhere, though many behaviors keep changing. With age, many unwanted behaviors may vanish but at the same time with many changes, there may be more meltdowns and aggressions.
So, how can parents handle all these and be less tired and confused? And again I will say “ Knowledge is power”. For any child, there may be many different kinds of therapies but the sole therapist is their parents. If we understand the core three problems of autism namely Theory of mind or the ability to understand the desires, intentions, and beliefs of others; Weak Central Cohesion or limited ability to understand the context or to “see the big picture”, and Executive Functioning Disorder or difficulty in planning, decision-making, impulse control, and emotional regulation. If parents can understand these key problems in autism, then this not only helps children but also parents to understand and handle their children.
Parents who already have lots of knowledge and have been with autism for decades, at times forget themselves and are solely focused on children and even obsessed to take care of their children themselves. It is important to take care of oneself to take care of your child. Take time off to pamper yourself, be with nature, go out with friends, and go out for a movie. Children do need to learn to live when you are not around. Other family members also need to learn to take care. Talk about your child with your friends and colleagues at work. Importantly, ask for help. Your well-wishers may not know how to approach you or offer help even if they wanted. Talk about your child’s necessities and difficulties. Simply requesting not to cuddle, touch, or hug your child (a very common Asian culture when greeting a child) can prevent meltdowns.
Parents may be struggling and confused as their child may not be showing changes as they expected. First of all, it is important to know whether the goal that you have made is achievable for that given time. When there are high expectations that are not met, there is a tendency to give up the efforts. But while taking care of a child with autism, consistency and persistence is the key. First understanding the child is very important. For example, even though the child’s age is 5 years his mental age may only be 3 years. Thus assessing a child’s mental age help us to plan the therapy according to the age. With different therapies going on and if the child is not showing progress, then it is time to reflect back and recheck how you are doing it. Getting help from professionals to assess on therapies you are providing or even at times changing modalities or therapists may be helpful. The core is to keep on exploring as we never know when and what can click. There are kids who have never been exposed to colors as parents think that causes mess but turned out to be a blessing once the child picked up the brush. The kid started to express himself through the paintings he made. This can be true with musical instruments. Exposing children to varieties of environments and situations help the child to desensitize to many stimuli and is also helpful for self-control and greater learning.
When it comes to the parents whose children are recently diagnosed, it is completely understandable that before accepting the condition, one has to go through different stages of grief. Initially, there is a stage of denial. “How can it be possible? I have taken good care of myself during pregnancy and I am giving 100% of my time to care for my child. This is not possible.” At times some parents may express their anger toward the person who tells them that their child may be having autism. They may get angry with the doctors who diagnose. Then comes the stage of bargaining. “I know my child has autism but I wish he/she has fewer meltdowns or at least indicate for needs.” With all new changes in daily routine and all therapies, some parents at some point of time may lose interest in their surroundings and feel helpless and depressed. With all this, there comes the final stage of acceptance. Once the parents accept the condition only they will start seeking new dimensions in life. Some parents accept it in a short period of time while some parents may take years and years to accept it.
For any parent, before starting any therapy having the basic knowledge of these therapies will be helpful. If someone says your child needs speech therapy, rather than rushing to the therapist or starting the therapy, try to find out why your child is not speaking or speaking differently. Is it because “ can’t” or “ does not want to?” Similarly, if your child has several meltdowns or runs here and there, try to find out the reason behind it. Starting medicine for aggressive behaviors or hyperactivity may be the last option.
Thus to help children with autism, therapies are helpful but first, try to understand your child. Increasing knowledge of every aspect of autism will empower you to plan for your child for today and for years to come.
