Why I Don't Like Labeling My Autistic Child As A "Special Blessing"

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When you decide to have a child or are in the family way, you wish for nothing but the best for your child. We want our little one to be in the pink of health, without any suffering and pain. I wanted that for my child too, but life doesn’t always give you what you want. Shortly after the birth of my child, I learned that my little bundle of joy was autistic. I remember feeling a sense of shock and numbness when I first heard the news.

We all know of autism, but do we know what it really is? Truth be told, I learned of it only after my son was diagnosed with it. Until then, autism to me was just another neurodiverse problem. The doctor said it was essentially a neurodevelopmental disorder, where my child would have potential problems with communication and social interaction. It also meant that my child might display repetitive or restrictive behaviors (1).

The days after the diagnosis felt like a blur. My husband and I were in constant touch with the doctor, trying to understand what this was about and the best way forward. We soon learned that one in fifty-four children in the United States of America was diagnosed with autism (2). We also learned that famous people like Albert Einstein, Emily Dickenson, Bill Gates, Lewis Carroll, to name a few, had autism. We began seeking medical advice from some of the best in the field, and they told us what we could expect to happen.

And then we broke the news to family and friends. Many of them helped us navigate through the pain we felt, reassuring us in all the ways they could. I want to point to a particular habit that almost all of us are or were guilty of at some point in time — making statements that we know nothing about. I’m talking about things such as “it is probably God’s plan”, “only the strongest are given pain because they have the strength to bear it”, “your child is a special blessing”, “God has a purpose for your child”. I am about to tell you why I dislike such statements and what sort of repercussions these statements can have on the person who is at the receiving end of them.

​​Hearing all that made me feel like it was wrong to complain about my son’s condition. It also made me feel guilty for not feeling, well, grateful. These people asked me to take everything in my stride and be happy because “some people have it worse”. Initially, all this made me feel uneasy. But after I had enough time to gather my thoughts, I felt anger. It is so wrong to call any medical condition a “blessing”. It can put a lot of pressure on you and make you feel guilty for expressing your emotions or even feeling them in the first place. In fact, many people who hear this refuse to proceed with medical treatment simply because it’s “God’s plan”.

Saying The Right Things

Saying The Right Things

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When discussing a condition like autism, people try to be nice and not cause any hurt to the parents who are taking care of an autistic child. Nothing bad in this but we also need to stop pretending that it is something without struggles. Parenting in itself is such a big challenge, taking care of a child with any medical condition more so. Apart from the regular time and attention that parents have to give to their child, financial costs also go up. Together these can really overwhelm parents who are already going through much turmoil. In such times, parents would rather appreciate some honest concern than some sugar coated comment like “it’s God’s plan”. So when enquiring with parents about their child, do start with the niceties but also don’t forget to be genuine and share the concerns in a way that they feel comfortable and understood. When you know that there is a medical condition that they are struggling through, calling a spade a spade is better than masking it in words. And as such, it’s important to do your due diligence in trying to learn about the condition before saying anything or giving any advice.

Your words have so much power. It is so important to be mindful of what you tell people who are suffering. I love my son, and he is a blessing — his disorder isn’t a blessing. I am proud of him because, despite all odds, he is academically bright! He learned swimming, can converse in two languages, and he’s just ten! Here’s what I wish people would have told me and other mothers like myself:

  1. It won’t always be hard. There will be good days and bad, and every moment will be precious.
  2. Your child might face medical problems. This is something you will have to accept, and the earlier you do it, the better. But the good news is that there is help — the world of medicine is a magical place!
  3. There are a lot of groups where you’ll find people who have autistic children. You will get a lot of support and reassurance there.
  4. It’s normal, acceptable, and one hundred percent okay to feel pain, anger, and sadness about your child. Fear is okay too! All your emotions are real, and you have every right to feel them.
  5. Your child will achieve so much in life — make sure you celebrate each of their wins.
  6. Your child will love you. Autism isn’t going to come in the way of love.

I understand that we all say things in an attempt to make the other person feel better. But sometimes, you may be doing more damage than good. Let’s make an effort to be sensitive in what we say, especially to people who are suffering. Have you found yourself in similar situations? What was your experience? Share your thoughts with us in the comments below.

References:

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  1. Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7082249/
  2. Data & Statistics on Autism Spectrum Disorder
    https://www.cdc.gov/ncbddd/autism/data.html
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