Often, we feel ‘uncertain’ about the ‘right’ way to be around someone with an intellectual or developmental disability. We fear doing or saying anything offensive by accident.
This World Autism Awareness Day, here’s a sneak peek into the diary of a child with autism. Looking at the world from his eyes might reveal some secrets we always wished we knew. The next time you meet a child with autism, this diary entry should come in useful!
I feel sad when our guests so comfortably ignore my presence. I too deserve a warm hello. Please don’t have any incorrect assumptions about my mental capacity. Just because my mannerisms are different from yours doesn’t mean that I have limited cognitive ability. I do understand everything that you speak. Respect my presence the same way you respect any so called ‘normal child’ in your world.
Even a simple question like, “How are you” can be like cracking an entrance exam. There are high chances of my failing and your turning away. It’s not that I don’t understand what you are saying, but my answers sometimes get trapped between the thought and the verbal expression of the thought. So instead, if you can start the conversation with a simple plain statement rather than a question it will free me from the fear of passing or failing. Statements like “cool shirt”, “smart cars” act like blocks to me on which I can add block by block.
I am not comfortable with making eye contact so please don’t force me to. I can think, listen and speak without making eye contact, I am more comfortable that way.
Me and my ways might appear different to you but so are your ways to me. Try to see me beyond my deficits and challenges and chances are you might meet a funny, genuine, loyal, loving and insightful person. Love me and work with me and enjoy what I bring to the world.
I don’t need you to speak slowly but I need time to form a response. Too often, you jump to the next question in anticipation that you will get a response to your second attempt. Can you try to be a little patient? I need time to process. If you would have simply waited for another 20 to 30 seconds, you would have got your answer.
And above all, don’t take it personally. Not giving a prompt response is neither a case of dislike or being antisocial. My head is always buzzing with something, sometimes the environment is overwhelming, too noisy or too crowded, making me a bit more anxious and hence I either take time or prefer to keep quiet. But the bottom line is, I need you and your presence.
I find some noises, smells, tastes or lights stressful, frightening and even painful. Fire alarms are a torture to my senses. Touch can be overwhelming and I might not like hugs. Even a friendly pat on my back can feel alarming. And I am sorry for this, but this is who I am. I need your understanding, acceptance and love to unwrap my real self to you. And I bet, you won’t regret then.
If I am not able to talk or express my thoughts and feelings, I become frustrated, sad or angry. You may witness one of my meltdowns. You might feel intimidated or helpless witnessing them - let me tell you they are equally upsetting for me too, rather they are terrible. Don’t feel pity or terrified, rather give me some space to calm down. Also, you may find me flapping my hands quite often. I do it to adapt myself to this challenging world. It’s a mechanism to self-stimulate. Don’t feel awkward, it’s pretty similar to you shaking your leg or fidgeting with something to ease yourself. The science behind is the same, the ways are different. I respect yours and you respect mine.
Yes, there are communication challenges and trouble with social interactions. But that doesn’t mean that friendship isn’t important. For me, communication and interactions isn’t just through words. Watch me and learn my language. Like all people, I too value others who want to be my friends for the sake of who I am. I respect friendship based on mutual interests, shared values and some negotiated boundaries.
This happens often. I don’t want to be a part of your community service or pity parties. Neither do I want or need people who want to look past the autism, as autism is integral to my identity.
Autism has it’s own set of challenges. The world sometimes appear frightening and confusing and I may panic, which might appear silly to you but it terrifies me. Sometimes it all get too much and in those times, I need you, your understanding and your help in not only accepting me but helping me as well in accepting my own self.
I know it’s hard to acknowledge my presence but in doing so I promise, you will not only make me happy but it will surely make your day too!
Note : In writing this, my fear is that in telling you what not to say ( by means of this imaginary secret diary of a child with autism), I may have made you afraid to say anything at all. That is the last thing I want from this. Most parents of children with autism are perfectly comfortable talking about their kids. They are every bit as proud of them and their accomplishments as we are of our children. Talk to them. There is nothing you can say if you are well meaning that could ever be worse than saying nothing at all.
Also read: The Black, White Or Grey Path For Autism?
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