The emotional journey of accepting that your child has autism is confusing and overwhelming. Autism spectrum is something that we can’t see and is hard to understand. One minute my baby boy has a tantrum over the color of a lollipop, and another minute he is playing just like any other kid! And then there is stigma!
Many communities and cultures, including my own, look at families with children with disabilities as defective or at very least, weak for not being able to ‘control their kid’. Even now that Alex is twelve, people who know me and my struggles well, tell me sometimes ‘look at him now, I told you he’s fine!’ or that such and such people ‘raised their autistic kid all by themselves, without diagnosing and he looks perfectly fine now’. These kind of statements used to make my blood boil, but not anymore. They come from ignorance, and no longer caring what others think actually feels freeing! I know that if I left autism untreated to avoid judgement of others and for the sake of ‘normalcy’, not only I would lose, but my child would lose! So here are my ten cents on doubts and worries about stigma:
1. Ignoring the diagnosis will never bring ‘NORMALCY’.
Pretending that things are okay, does not make them okay. It may be quite easy to hide children at home when they are little. But children grow and have to go to school and hiding them at that point is impossible. Meanwhile, the best years for the intervention are the early years!
2. Missing out on the early intervention may slow down or stop your child from reaching his or her potential.
There is truly NO DOWNSIDE and only an UPSIDE to the early intervention. Once, when Alex was almost three and I was battling the acceptance of Alex’s diagnosis, I had to fly to Tucson for work. I was running late, the flight was about to depart, and I was the last one to get on the plane and throw myself in the seat as the flight attendants were closing the door behind me. An older man was sitting next to me smiled. We were sitting in a first row and he looked like he had been sitting in the plane for a while, watching people getting in. He seemed so calm, which was so disharmonious from how I felt ~ stressed, confused, overwhelmed, frustrated, depressed. He stated the conversation with something like ‘tough day?’, and before I knew it, I was telling him about all my troubles and concerns. And he told me something that turned around everything for me, he said, ‘so what are you afraid of? You know, if you don’t get on the autism train now, you may never know what he is truly capable of.’ That was a turning point for me.
THE IDEA OF NOT GIVING MY CHILD THE OPPORTUNITY OF REACHING HIS POTENTIAL SUDDENLY FELT SO DESTRUCTIVE TO ME.
3. Knowledge is power. Listen, talk, read.
One of the biggest reasons I feared autism is because I wasn’t understanding it from the medical standpoint. I think that being able to physically point to the reasons that cause particular behavior and disability helped me to RESPECT my child’s feelings and behavior. And the respect caused me to learn to SPEAK AUTISM so I could communicate with him and teach him everything I know. Think about it, if your child is deaf, would you not learn sign language?
Having said all that, raising a child on the autism spectrum is hard, and it is an ever evolving world of education. Be prepared to fight, and learn to take ownership of your child’s disability. Autism is now part of your life, but it won’t control your life if you don’t let it. Sure, I sometimes wish autism awareness would come with a baby manual for some heads up. But then, I probably would not open it until the reality hit. I never ever thought it would happen to my kid… not really sure why I thought that.
♡ Zuma Ayriyan