This article was originally published on the saiconnections blog page. You can read the original here.
Autism was thrust upon me.
When Mohit was diagnosed in 1992, I did not know the meaning of the word. Later, I decided to study it professionally and became certified.
But you, the professional and service provider, work in this field by choice. For this, I salute you.
We give years of our lives to the families we work with. Our students occupy our mind space through the day. And their names crop up in our dinner time conversations too! We work to make a difference in the lives of families.
When our students reach a milestone or achieve success, our hearts soar with them.
That’s exactly how I felt when Aahan sent me this picture
Aahan’s message accompanied this picture and touched my heart:
“Hi Kamini Aunty. I got an award for 25% improvement score. Today was the annual award ceremony day.”
Aahan is on the Autism Spectrum.
How wonderful that he got this certificate! What’s even more amazing is that he reached out to share it with me. He’s proud of his achievement, as he should be. He has begun to reflect on his own progress to become a motivated youngster.
I’m taken back to an incident that occurred 7 years ago.
An 8-year-old Aahan waited for his bus to arrive in the morning like every other day. But today it didn’t. Aahan was oblivious to the fact that he needed to do something. Luckily, his mother chanced to look outside the balcony. She was horrified to see Aahan waiting downstairs. 3 hours had passed! That was then.
Now, Aahan travels independently all over the city. He knows how to Uber a cab or cycle to the places which he needs to get to. What a change in awareness!
It’s reflection time for me too. I’ve been in this field for over 23 years now. I did many things then, that I probably would not do now.
Today, I’d like to open my heart to you about those things. I would like to share how I was about ten years ago versus how I treat children with autism today, and the unbelievable difference it has brought about not just in their lives, but in mine as well.
1. Understand the core deficits of autism
Then, I provided services focused on developing language and skills. This is not a bad thing. But while the data sheets showed great progress in terms of the students learning and using words, the children were actually not improving. They depended heavily on prompts and used rote language. We saw a lack of motivation and many behavior issues. They were unable to solve daily problems or make their own decisions.
It took me years to learn that it’s easy to make a child ‘do something’. The difficulty lies in awakening the spirit in them to want to do things on their own. This intrinsic motivation was not activated naturally, like it does in typical development.
We worked our heads off to get speech going. But later I realized that communication is more than speech. It requires understanding that you communicate with a partner… that you respond to what someone is saying. Rote answers will go only so far. Having a repertoire of 500 words doesn’t ensure that you understand what to say when and to whom.
To build communication and remediate autism we need to work on core deficits. These include sharing emotions, understanding roles and responsibilities, referencing and dynamic gaze and most importantly – intrinsic motivation.
Now, I work on the core deficits of ASD.
2. Parents Are Essential
Then, the mothers of children with autism were an addendum to the program.
It was like, “I’ve taught your child 5 words today. Go home and practice them. Once he gets these, I will add 5 more.” But more often than not, I was right back where I started.
Do you also experience the same thing? Your data sheets show good progress. You have put your sweat and blood into teaching the child. But at the end, the child doesn’t use these words naturally. Parents cannot see the same changes as you. Generalization to other environments is a huge problem.
The child goes back home every day. He spends much more time with the parents than with you.
Think about this.
The mother is your ally. She holds the key to bringing a change in her child. And the mother must be empowered.
Now, I work closely with mothers and train them.
3. The need for a Consultant
Then, I worked on evaluating and setting goals for each child.
Each child you work with is different. You know that no two children with autism are exactly alike. Hence, it’s important to have a customized program that looks at the unique needs of each child, plus who works closely with parents to implement the program.
The consultant can add richness and objectivity to the program.
Now, I work on providing family services – goals for the child and the parents to work on. And I will share these lessons with you in a 12-session training program.
4. Collaboration with Specialists
Then, my program was a closed one.
But there lies a wealth of knowledge and specialty out there.
Each of us works with what our core competency is. Today, I work on the core deficits of ASD. We have the expertise of stalwarts such as Ms. Asha Kumar (ASLP) and Dr. Bijliwala (OT) adding value to our program.
Now, it’s a collaborative model. In this way our families reap the benefit of the expertise of several specialists under one roof.
5. A different measure of Success
Then, I viewed progress from the view point of skills and language developed.
It’s important to have a wide-eyed lens view which focuses on a good quality life. We can go into spirals trying to achieve objectives which are not meaningful in the long run.
For instance, we may want a 6-year-old child to learn to write. But should we persist with this objective when the child is 16 and hasn’t achieved it? Or should we focus on independence, enjoying meaningful relationships and friendships, looking at employment prospects?
Now, I know that there is much more autism. Mohit is 27. Most of my students are adults. Today I measure success by the barometer of a good quality of life.
My dear friend, you chose to become a service provider. Brownie points to you right away!
Imagine a mother sharing how well her holiday with her child and family went.
Imagine a mother telling you how much she trusts you because you’ve added meaning to her life.
Imagine this child that you nurtured, getting married and enjoying a good family life.
Yes, all this are possible. But there’s just one more thing that I failed to mention.
It has taken me a lot of courage to write about it.
Then I believed that Mohit and all other kids on the Spectrum needed to be fixed. I wanted to push autism out of my life. I thought autism was this mask that needed to be pulled off. If I pulled it off, then the ‘normal’ Mohit would emerge.
I’m ashamed to mention this today.
But, I accept Mohit and all my students for the beautiful individuals that they are. They have taught me about beauty, acceptance and being non-judgmental.
They will teach you too. Are you ready for the challenge?
Kamini Lakhani is a, RDI program consultant and the Director of SAI School (ABA Center) and SAI Connections (RDI Center). She has over 19 years of experience working with individuals with Autism Spectrum Disorders and currently serves as the director of our RDI Professional Training Center in Mumbai. She is the Director of SAI School (ABA Center) and SAI Connections (RDI Center)