What We Are Really Missing on Autism Awareness Day

It was a beautiful Sunday afternoon. My friend and I stopped by a fruit seller’s stall. The pineapple was tempting! The fruit seller painstakingly peeled and sliced the pineapple and charged us Rs. 100. Ready to go!

This happens only in India! Where else in the world will you get a freshly sliced, ready to eat pineapple for $1.50!

“India is beautiful! Despite the roads being terrible!” my friend said. We laughed. It was a jibe at me. I often complain about the roads and infrastructure in our country.

As I ate the delicious pineapple at home, I pondered about the good things. Helpful neighbors, house help, home delivery of anything you can think about!

It’s a matter of perspective, isn’t it? If I shift my perspective to look for good things, I find plenty!

My mind drifted to my students and the families I work with.

In situations where the mothers have changed their perspective, children have advanced phenomenally. Here are three instances.

Scenario 1

We were facing some challenges with Nafi’s fine motor skills. Though we saw changes in eye gaze and interaction, we did not see the desired changes in fine motor skills. Zohra was worried about his limited fine motor skills, which led to him responding in limited frameworks.

Yes, she had a point. There had to be another way.

Finally, during one of our sessions I asked if she could shift her focus from skills to problem solving and thinking.

She tried it. She used declarative language and asked Nafi what he wanted to do with the boiled, peeled potato that lay in front of him. They were making bhel.

Nafi didn’t do anything for about 30 seconds. Zohra stayed calm. Suddenly he reached out and retrieved the knife.

He smiled with the look of competence. Zohra cut large pieces and he halved them! This was the first time that Nafi cut boiled potatoes independently.

We witnessed a ripple effect. Teachers working with Nafi also commented on how his fine motor skills had improved.

How did this work? The feeling of competence led to motivation – an intrinsic drive.

Nafi WANTED to cut the potato. And it started with Zohra’s changed focus.

Scenario 2

With 13 year old Shraddha, we were stuck with sharing of emotions.

She did not show a sense of ownership. Under her mother’s guidance, she would create beautiful artifacts or cook something fancy. But the sense of achievement or pride was missing.

On watching some videos together, we realized that Shraddha tried her best to do things exactly the way her mom wanted her to. She was afraid of making errors. She was constantly over referencing.

We delved deeper into the issue. I asked Uma what would happen if Shraddha made a ‘mistake.’ Uma decided to back off and let Shraddha do things her way.

The results were spectacular!

Shraddha started to experiment doing things her way. She developed a sense of ownership and confidence. And surely enough, the emotional sharing between the two soared!

Again, it started with Uma. She changed something within herself first. I’m sure you have seen this video. If not, look at how wonderfully regulated and self confident this beautiful young woman is.

In both cases, the children changed. But they changed because the mothers changed something in themselves first.

Today, the mothers are calm. The children are happy. It’s a win-win situation all around!

The focus in autism has always been the child. Change the child. Make him better. Fit him into this frame that we have in our minds. I believe we have got it wrong.

It is not about changing the child. It is about changing ourselves first.

It’s been 9 years since I changed my teaching style with Mohit.

Prior to this, life was about language drills, imitation, task completion. My son, a teenager then, was overwhelmed. He literally imitated everything – without discrimination.

I remember a video where I casually rubbed my cheek. He looked at me and did the same!

It hurt that he did not ‘understand’ what to imitate and what not to imitate.

Then, Joyce Albu, my consultant, asked me to set up a framework where he could not imitate me. I painstakingly set up this painting framework. I put something between us, so that he could not see what I was painting. I got engrossed in my painting and ‘forgot’ about Mohit. Suddenly I looked over to see a beautiful abstract painting.

That’s how Mohit the artist was born.

Yes. Something in me changed first. I let go… of the teenager that I wanted him to be.

Autism Awareness Day is close.

We dress up in blue. We want the world to accept our children. We want to spread awareness about autism. It’s wonderful! The world definitely needs to know more about autism.

But I have a question for you. Are you aware about your own child?

1. Do you know how much he understands, even though he may not speak?

2. Do you know how he learns? What is his learning style?

3. Do you know how overwhelmed he gets because of his highly sensitive system?

4. Do you know how much more he is than the label that he carries?

5. Do you know about his strengths, his talents?

6. Do you know how he overcompensates for his difficulties?

I ask myself these exact same questions every week. If my son has to reach his full potential, then there are many changes that I still need to make.

Autism Awareness Day is a day for reflection.

“Change the way you look at things and the things you look at change.” Dr Wayne Dyer.

Header image: Stephan Hochhaus on Flickr