What Happens when You Build a Skyscraper Without a Foundation (About Autism Parent Training and Support)

Vinay (name changed) came into my cabin happily, to watch his favorite video. He did this everyday during lunch time. For him, that day was no different. But for me, it was very different.

It was his last day at school. Goodbyes are always difficult. I had tears streaming down my cheeks. I looked around frantically for a tissue. But Vinay did not notice anything. Not my tears, not my feelings.

He was 10 at that time. I remember thinking, “I taught him everything, but what did I really teach him?”

Vinay had a diagnosis of Autism Spectrum Disorder. He was referred to us, 2 years prior to the above incident. The chief complaint was his inability to use words effectively and to have conversations. I evaluated him on the ABLLS (The Assessment of Basic Language and Learning Skills) by Dr Mark Sundberg and Dr Jim Partington. We set up a comprehensive program to work on various objectives including making requests, expressive labels, receptive language, conversations and a host of other repertoires.

We saw tremendous changes in the first year itself. He was our star student. Everybody’s favorite. He would go downstairs to the bank and ask, ‘ATM hai kya?’ His progress was off the charts. He covered every objective that I set for him. Reading, writing, spelling, conversations – you name it.

There came a point where I thought that he needed to be in an inclusive school. This would help him go ahead with his studies and prepare for exams. We found a good school and transferred him there. We all were happy. He was the successful student that we had managed to integrate.

Over a period of time, we lost touch. I assumed that everything was hunky dory. Two years later, his mother asked for an appointment to come and see me. I clearly remember singing to myself that morning. I looked forward to seeing him.

When I saw him, my heart sank.

He clung to his mother like a little child. His body language was floppy. His eye gaze was out of sync. He did not look at me. His words were not clear.

Shocked, I asked his mother what had happened. She said that he had improved with his studies, but everything else had gone backwards.

A gloom descended on SAI that day. I should have never let him go. I should have kept a better check on him. Somehow, I held myself responsible.

That night I could barely sleep. My mind relived the 2 years spent with him. I tried to look for clues about why this could have happened.

Then, I remembered his mother complaining at a PTA meeting. “You have taught him so much, but why doesn’t he understand that he should not come out of the bathroom undressed.”

I felt a little irritated with her question at that point of time. But it was a red alert that I had failed to acknowledge.

Dr Gutstein describes the development of communication using the analogy of “bandwidth”. Typically babies spend the first two years of their lives broadening their communication bandwidth. During this period, children do not talk a lot, but they do communicate. Talking, or language development, becomes a major enhancement to communication after they have mastered the other aspects of communication. Prior to learning to speak, children usually are masters of using gestures, facial expressions, body language, communicative intent, and vocal elements like intonation, timing, emphasis, pacing (otherwise known as prosody) to communicate their intentions. They normally have a good understanding of contextual processing (e.g. It is ok to hug Grandma, but not ok to hug a stranger), the ability to pull upon previous experiences and integrate them to predict the future, and the ability to integrate and thrive in dynamic situations. All of this requires general activation of many different neural processing centers so that they are potentially available depending on what is needed. Like a wide area network that the person can use as needed.

What does a developed bandwidth look like? The video below is illustrative.

Note the elements of facial expressions, gestures, body language, intonation, prosody all in play in the above scenario. What you see is a ‘conversation’ between the twins.

Words are a natural progression from here.

My question to you – Why do we forget this when we deal with autism? Why do we get so obsessed with making the child speak, when the foundations are not in place?

Why don’t we focus more on these foundations? Even more important, what are these foundations?

1. Regulation

   This comprises of understanding of roles, coordination with partners and essentially the ability to go back and forth. This is a prerequisite for conversing reciprocally.

2. Emotional Sharing

   This includes sharing emotional reactions to a mutual experience by using various emotions. Emotional sharing does not require words. But it is the foundation for experience sharing or declarative communication.

3. Referencing

   A typically developing 18 month borrows a parent’s perspective automatically. If a stranger approaches mother and child, the child immediately looks at the mother to understand if it is okay to interact with the stranger. Referencing is used to resolve uncertain situations. Approval/disapproval are picked up by young babies. This is a must for relating socially.

4. Episodic Memory

   Think about yourself. When you look at an old family photo taken during a vacation what do you experience? You may remember not just the place or people that the picture was taken with, but other related events too. You remember how you felt. This is known as episodic or autobiographical memory. Episodic memory lays the foundation for reflection, learning from experiences and understanding consequences in a thoughtful manner.

5. Flexible Thinking

   This means ‘going with the flow’. Things may not go as planned, there may be a sudden change of plans. It also includes an element of problem solving. Flexible thinking is an important part of dynamic intelligence. Unless we have flexible thinking, the world will be a very difficult place to navigate.

Vinay’s incident occurred in 2010. Perhaps if we had worked on the foundations first, things may have turned out differently. The foundations of communication and the base of emotional sharing and development may have stabilized and maintained the gains that we saw.

Today I’m better prepared. I work on the foundations first. I start off by working on the Guided Relationship between parent and child.

Since I’ve done this, I’ve seen far better results. I’ve seen changes in terms of a better quality of life for the entire family.

As a parent, you should choose a program that:

1. Considers you, the parent, to be an important part of the program and that empowers you
2. Is respectful of your child and improves your understanding of autism
3. Enhances foundations thus remediating the core deficits of autism
4. Results in a better quality of life for your entire family.

It is never too late to make the right changes.

There is hope… there is always hope.

According to you, what aspects are critical for an affected child’s development? And how do you ensure his/her needs and requirements are met? Do leave a comment. I would love to hear from you.