Serendipity: How we used the written word to teach a girl with Autism to understand Language
I call her Serendipity, the girl I want to talk to you about. I met her quite by accident and it was almost an accidental observation we made regarding her strengths that resulted in a major breakthrough in her skills. I first heard of Serendipity from her maternal uncle who is a good friend. Over dinner one balmy evening, we discussed about my work in early intervention. I think you should meet my niece he said, something is not quite right about her development. The very next week; Serendipity all of two years and two months, was at my centre along with Mum, grandmother and uncle. She had no speech, didn’t seem to understand what was being said to her; wouldn’t respond even to her name, had no eye contact and couldn’t sit in one place for more than 20 seconds. She is a picky eater said Mum. She takes ages to eat and it is an ordeal getting her to eat anything. Besides the feeding challenges, what bothered Mum the most was the total absence of any speech.She doesn’t even say Mama, said Mum sadly.
Having concluded preliminary assessments it was clear that Serendipity would require interventions and for a prolonged period of time at that. My notes for the day tell me that in addition to her inability to sit still, her eye contact was almost nil, there was no response to name call, she would cry to communicate. In fact, her eye contact was one of the hardest to develop, more on that later. At the time, they lived in a city where there were no services for Autism. The family moved bag and baggage to Mumbai, work did not permit father to move with them.What followed is two and a half years of intensive interventions; family’s sheer grit and determination to overcome all odds. For the entire duration they were with us, they did not unpack their television.Mother ensured that she diligently followed all that we trained her in and more.
The early days were about settling Serendipity down, developing skills required to enhance her learning, overcoming her feeding challenges with specific exercises for the same.Six months post intervention, a lot had changed. She was sitting for 30-40 minutes at a stretch, was beginning to engage in some play with others, was smiling for the first time since I met her. Infact, her face which had been almost expressionless up until then; was showing a few emotions. Her eye contact though still remained poor. We had tried but the improvement was minimal. The first term break, mum had only one assignment- to work on Serendipity’s eye contact skill. As was her habit; mum worked diligently with all the exercises we had given her, and by the time she returned from the break; we saw significant improvement in eye contact. (Parents often make the mistake of trying to do too many things at a time, taking up goals that the child is not developmentally ready for. My clinical experience has been that working on developmentally appropriate skills and building a strong foundation yields the best outcomes. Regretfully, many a times families are over focussed on “speech” and there are therapists that encourage this as well. While this yields quick results in the short term; in the long run it often results in patchy development).
The next big challenge we faced was her understanding of language.Generally, we have observed ( when we follow the Com DEALL program) that children’s ability to understand language develops almost hand in hand with their settling down. However, in Serendipity’s case; we did not see this almost dramatic gain that we see in most children.It was an accidental observation that led to a major breakthrough in this direction. We noticed that Serendipity was quite attracted to print.She would invariably flip the pages of any magazine or newspaper that she came across. ( Some children with Autism are know for their strong visual channel and can develop ability to read; without having been taught the skill formally) So, mum was asked to label all common objects in her home.She was asked to make a scrapbook of pictures of these objects, labelling each picture. Next we encouraged Serendipity to match the picture as mum spoke out the name aloud to the written word on the real object. We used Serendipity’s Hyperlexia to over come the auditory barrier and develop her understanding of language. It was almost miraculous; in a very short span of time Serendipity was able to recognise most objects in her environment.Mum took the task seriously and everything including masala jars in the kitchen were labelled.Most of Serenditpity’s later learning happened through the visual channel.
I must mention here that parallel work was on in several other areas (social, cognitive, motor, emotional). The Occupational Therapist in team worked on her Hypotonia. Until her tone improved, Serenditpity was unable to point, communicate, could not chew her food well, and her play was also limited. A specific exercise regime was developed and had to be carried out at home as well.I cannot emphasise enough that the number of repititions of the exercise are critical to see gains.Often families will stop at 2-3 times when the exercise should have been done 20-30 times. Serenditpity’s mother found clever ways to work on her tone. At times she was made mum’s little helper and asked to push furniture around the house, carry books from one room to another. At other times, they made a game of taking the stairs instead of the lift. Whenever he was home on leave, Dad also chipped in with the physical aspects of her development.
Two years down the line, it became possible for Dad to move to Mumbai and he too got closely involved in her development. At the time, we were working on the higher levels of Serendipity’s attention. This was another weak area and I recollect a lot of work went into bringing it up to par. While attention had improved, it was still not at par with children her age. A common yardstick we use is that a child who is five years old should be able to sustain attention on a single activity for 12-13 minutes. The quality of a child’s attention is critical to all aspects of learning, particularly so in a noisy classroom. I digress here. I wanted to share the reason I can recall Dad’s contribution to attention work even after all these years. One afternoon he sat with me to learn how complex block imitation and a variety of similar activities could be used to develop attention. All the while Mum was no where in the picture. She turned up at pack up time with bags and bags of shopping. Dad had given her the afternoon off to shop at the nearby Crawford Market, taking on the responsibility of attending the parent training that day. I can remember; even today mom’s joy as she spoke about the shopping she had done and the wonderful bargains she managed to haggle for. Working with Autism is not a day’s job; it is a marathon. Families that work together; couples that support one another have an easier time of it. I thought it was wonderful that not only did Dad give Mum an afternoon off but also ensured that it was guilt free; since he took on the responsibility of attending to the daughter’s needs.
By this time, Serendipity had developed enough skills to join a nearby kindergarten. Fortunately for us, one of the teachers who worked with us during the afternoons; worked in this school in the mornings. Gopa; is a large hearted and generous soul, she worked with us out of genuine empathy and a desire to make a difference. She was instrumental in sensitising the school teachers; together with Serendipity’s mother she worked hard to troubleshoot and help Serendipity settle in to this new environment. In fact, Mum joined as a teacher in the same school. She would prepare tons of worksheets before hand and every single opportunity she got she would help Serendipity practise her academic skills. Being in the same school helped mum to ease out the break times, coordinate better with teachers. The early days were tough going for everyone. Most of all for Serendipity.She was now attending school in the mornings and our intervention centre in the afternoons. It took her three months, but she settled into this routine. The settling period was tough on the intervention team as well. While she was on her best behaviour at her new school; at DEALL Serendipity could be herself; this was home ground for her. So, a lot of the frustration and challenge of settling- in were expressed here; often in the form of challenging behaviours. Restlessness, quick temper and several other challenges that we had previously overcome seemed to all return. However, we reminded ourselves that this was only a temporary phase until she was settled. We ensured we gave her a lot of love and encouragement; continuing to build on skills she required but at a pace that she was comfortable with. Knowing when to push and when to go slow is very important to the child’s development. It is important to recognise which aspect of development to focus more on , depending upon the therapists understanding of child development principles and the specific child. At the same time, it is critical to know when a child needs to just be and all that is required is a supportive environment. I have seen children ready to be mainstreamed actually regress because they were pushed to perform when all they needed was support and positivity.
During Serendipity’s last year with us we worked on higher aspects of her language and also a lot of play dates to develop her social skills.More on that some other day. At the end of three years in Mumbai; the family relocated to Bangalore. Mum joined Serendipity’s school as a teacher for a couple of years more. After which, she went back to her original job as a lecturer in a college. By then Serendipity was well settled in school. Today she is in Class 9, an excellent artist - painting, knitting, tattooing ; writes beautiful essays and is extremely social. A far cry from the frail little girl that I met all those years ago. I haven’t met her in many years although I am updated through photos and messages. One memory of her that will always remain with me was when I called her home in Bangalore to say I was visiting and would like to meet if they were free. She must have been about 7-8 years old at the time. She answered the phone, telling me all about herself, school, her mum etc. But the best was when I asked her if she remembered me , Of course Deepa Aunty! I remember you she said, you are the same Aunty whose school I used to go to when I was a baby!