Discovering your child's autism diagnosis, and things to remember

Tulika Prasad

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You see red flags in your child’s development, you apprehensively look all over the internet, hoping to read “it’s nothing to worry about,” however your next visit to the pediatrician aggravates your concern as you check off a list of milestones missed and you finally find yourself staring at a sheet that screams AUTISM back at you. Some of you feel a sense of relief, and some are shattered at the news.

Many parents go through a grieving period, before they settle in with the new order. Many gear up instantly to fight for the long haul and some prefer to be in denial for quite a while. Everyone reacts to this news differently but one thing that we all know is that we now have a new way of life and we are in it for the long haul.

As the doctor warmly smiles at you and talks to you in detail about the diagnosis, and gives you a bunch of websites to visit, a list of resources to use and names a few support groups to reach out to, what you actually carry out of that door is a sense of panic . You feel overwhelmed. You don’t know where to start and who to go to. You might still have a lot of question you need answers to. The whys, hows, now what and all the self doubt question start floating in your mind. While I still continue to search for answers to these questions, there are a few things I’ve learnt along the way that my doctor did not tell me.

My child is still the same: Though it might seem like the diagnosis changes your child, it does not. My child is still the same adorable, smart and unique kid that he was before the diagnosis. Nothing in him changed between when we entered the doctor’s office and when we left it. I will still love him the way I did before the diagnosis. He will still be my most favorite person in the whole world and I will still be by his side whenever he needs me. If anything , this diagnosis has only made me a better mom because I’m now aware of his challenges and his strengths more than ever.

I’ll live through this: When my son was diagnosed, it felt that my whole world came crashing right in front of my eyes. Only it did not. All I needed to do was readjust my perspective. Not only did my family come out of the self-imposed misery, it came out stronger and better. We celebrate small victories in big ways and appreciate the little things in life even more. We seem to be living through this pretty well and in fact learning new things every step of the way. There are some days that are more challenging than others but then who doesn’t have those days?

It’s not about me: For quite some time I felt like I was wronged and that I did not deserve this. It was all about me, my dreams, my life that is now changed forever until finally the fog lifted and I could see clearly. It was never about me. It was about my son. He was the one who was diagnosed with Autism. He will have to fight with his challenges everyday. He will be the one who will be trying so hard to deal with the sensory overload. He will be the one who will have a hard time expressing himself and communicating. He is the one going through so much every single day of his life. I’m just a soldier by his side. He is the real warrior. It is and always will be about him.

It’s not a gloomy road ahead: I’ll be lying if I said I don’t worry about the future. I do. It sometimes makes me sick to my stomach thinking about what the future holds. It also makes me hopeful. However, it does not take away from the fact that my son is my joy. I don’t plunge into a dark hole everytime I look at him. He gives me hope and he is the reason I stand up everyday to try harder. His autism does not come in the way of us having a good time. Our everyday might be different from most but it’s still what brings smile on our faces. We still go on vacations, have parties, play in parks, shop, eat, celebrate and do almost everything that every other family does. Our days might be sprinkled with a few therapies, meltdowns and limitations but then we also get to see more miracles than most. It’s never a dull day. Exhausting...maybe; gloomy...nope.

I’m not alone: There have been days when I’ve felt like I’m the only one in this situation. My challenges seem towering and I feel overwhelmed. And then I find someone facing something similar or even more challenging. It’s humbling when that happens. I now know that although it might appear that I’m alone in this journey….I’m not. I just have to reach out and I would find so many who share their stories and experiences that I can learn from. Some are inspiration and some give us hope .You are alone only as long as you want to be. There is a whole community of people out there who provide emotional, physical, financial and professional support and stand for and with each other. There is always someone out there who has walked the path or is in your shoes. Someone who knows. Someone who understands and someone who will be willing to be there by your side.

It’s nothing to be ashamed of: It took me sometime to talk about my son’s autism in public or with anyone for that matter, but when I did, it was like a heavy weight off of my chest. It was such a relief. It then dawned on me that this was all my making. For some skewed reason it felt that it was our or our son’s “fault” that he has autism. It’s not. It’s a medical condition that we don’t have control over. It’s not that he is a criminal. I’m not ashamed of him. I’m actually proud of him for all that he achieves in spite of his challenges. Then why hide? Autism is a major part of what my son is, of what he will be. I cannot hide that. If I feel ashamed of him, it only rubs off on my son , making him feel less confident about himself. I wish I knew this early off.

I’m stronger than I thought: I didn’t know I could fight like I did...at school, at doctor’s office, in malls, parks--everywhere my son needed me to stand up for him. At the time of his diagnosis, I felt weak in my knees. I almost felt like I’ve already lost the battle when the battle had actually just begun. The fight is not always about standing up to someone else. Sometimes you are fighting your own self - failures, depression and that sense of helplessness. I really thought I would give up someday soon enough but I see parents on this journey for longer than I can think of. I watch them smiling and gearing up for yet another day and it makes me want to keep trying. I see my son get up everyday, excited about what lies ahead. How can I fail him? I see him look up to me when he is unsure or alone. How can I curl up in a ball and cry over what I feel ? On days when I feel low, I still look forward to the next day with a promise of something better. My son’s autism made me stronger and I did not know that getting in.

This is not an easy journey. It's extraordinary. It requires patience, perseverance and a lot of positivity . It needs us to believe in our child because a lot of those out there will not. It will take a lot from us -- our passion, our strength and our commitment. I did not know all this getting in. What I got from the doctor's office was extremely helpful but what I learnt from life about autism is more profound.