Awareness is not Enough – What Autism Means to Me (The Mother’s view)

Guest post by Adita Divecha, Karan’s mother

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me..

It’s a way of life. Everything in my life is centred around it. It dictates what I can and cannot do. Because of it, sometimes I do feel that I don’t have a life. And it’s not just me…it’s Karan as well. Does he really have a life? He can’t do so many things other 15-year-old boys do, he doesn’t have fun the way they do. It’s limiting. When I look at other 15-year-olds, I feel bad for him because he is, in a way, missing out. It’s not so much about me than it is about him. Normally you’d think when your child is 15, they can look after themselves and you’d be free from certain responsibilities. But my son is going to be a baby, mentally, all his life. Hopefully he will be completely independent in a few years but he will always be a child compared to other people his age. Your child has not grown up. Karan hasn’t grown up. He will not really grow up. It makes me sad to think that he isn’t truly experiencing everything as he should have done. But for me, it gives me constant stress because all I’m worried about is what will happen to him when I am not there. It stresses me out to an extent you will not believe.

Yes, autism has taught me to be more patient, to be strong, to be loving…more than I could have ever thought. It also helps in the sense that you come to know what people are really like; faced with autism, some people turn out to be nasty in a way.

It’s very easy for people to give talks and seminars and tell me to go out and do this and do that. Most of the time I want them to just shut up. It’s easy to give talks and lectures, but it is not easy to actually do what they say.

But Karan is my sweetiepie…the apple of my eye. He is so loving…so loving. The thing that amazes me is that Karan does not understand how to hate or to dislike anyone. He’s always smiling, trying to hug you or kiss you. It always amazes how he never gets angry with anyone. How we get angry with people, suddenly hold grudges. People with autism are so loving; Karan is a sweetheart. I’m thankful he is who is. He is my blessing. Because he is never going to lie to me, he’s never going to hate me, he will never break my heart. He is what he is…he will never be two-faced. Other parents have so much else to be worried about with “normal” teenagers, none of which I have to contend with.

You know, he loves it when I tell him he’s a handsome boy. A “normal” 15-year-old would probably cringe at his mother being so affectionate. But my son will always love me and want to be close to me. We will never grow apart.


Italicized open letter courtesy Autism Understanding and Acceptance

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