A journey from no meaning to meaning in social life! A 5 day picnic with Autism. 

It was a surreal feeling this morning when I made only one cup of Bournvita. Only for my younger son. He left for football at 6 AM. I am sitting with coffee now and wondering "what could H be doing, 1500 kms away from us on his school picnic by himself….4 boys in his Holiday Inn accommodation…sleeping after their Gen Z chatter on topics I don’t want to know about !" Five days. It’s the longest he has been away from family. H has managed his autism for 15 years. H will turn 16 soon and I do hope he can be far away more often but connected ! :-) This is a blog on social communication development in autism, leading to better Quality of Life (QoL). Some of you will close this blog now. It’s okay. Each of our lives have been very different. I do urge you to read further so that I can give you my input on how we prioritised different skills during this 15 year journey. 

Quality of Life(QoL)* - an individuals perception of life. That is what we aimed to do better since the diagnosis. Not just for him but for our family of 4. 

Social communication is the primary difficulty in autism and this blog is about it. Our work with H was to bring out the best social communication possible to achieve good QoL. Has anyone told you this? This can be the aim for families. For us, it was not academics or speech or encouraging savant abilities. We never expected him to overcome social communication difficulties completely. We encouraged him to try his best and spent the initial 2 years only requesting him to explore social communication by providing time and right guidance. Requesting a social engagement was probably several hours of our days. It was a game of patience vs the autistic mind and of course it was well guided by our autism consultant.. almost everyday. 

In the initial years when he was around three, we realised it was the right time to catch up foundations of communication he might have missed. We wanted him to enjoy life to its fullest, we wanted him to want to do things. Motivation, non-verbal communication, observation, physical body readiness and so on are areas we worked on. Once we were able to achieve some success, he was able to go to school on his own - He was non verbal but communicative in his own way. It was only then, that we started looking into academics. School gave ample time and motivated him to catch up. We had worked with him so mindfully for 2 years never crossing into his space without permission, hence he never had behaviour challenges after that. He was happy at school and home, his happiness mattered to us. He learnt less than 10% at school. But there was an Aha moment. He phrased a broken sentence one day to say that “ask remedial teacher to allow PE time.” I didn’t understand. So I met his teacher. I understood he was being taken out of play for extra study. I requested them to take him out of studying languages, but to allow him to play. It was probably the best situation that happened as H realised communication got him what he wanted. He realised that I would back him and champion him if he could tell me what bothered him. It was after this episode that he attempted to share a lot more, than just his needs. He smiled when I goofed up. He laughed at my younger son's mischief. He hugged my husband when he returned from office, which my husband said he missed when H was a toddler. He called me mummy clearly at 5 yrs. 

He loved going out. He had probably walked the distance from Mumbai to Chennai as casual evening walks even before the age of 7. 

By 7, he slowly started showing signs that he was self-sufficient. We somehow felt that we worked on a good ego by placing QoL high. He could now clearly sense people and their thoughts about him and autism. He stayed away from people who spoke very nicely but didn't provide warmth or truth. He slowly was able to sense the same amongst classmates too. He was clear about who liked him/who didn't/who was willing to help etc. We felt this was a success. He could do this well by the time he was 10. I did not compensate for him and he would now make the first attempt at school. This gave us more time. He could choose the right people now. He was growing socially. 

We were careful not to make him socially uncomfortable. We limited birthday parties to only those families we knew well. We didn't call classmates just because we had to.

Every holiday, we worked only in undoing the stress of examinations and making him improve his communication skills. We gave him loads of things to do including making him responsible for milk tokens. He would now interact with all people who visited our home daily like bread man, car cleaner, paper man etc. 

To improve communication, we gave him tasks which weren't sometimes to his liking. Example, explaining a first grade story in his own words. We were ok if it was a broken one. We encouraged him to try on his own. If he didn't wish to say, he could record an audio or write it too. Until now he wrote only words in answer sheets. Correct words. But only words. Not proper long sentences. MCQs were great but paragraphs were a struggle. It was difficult for him to understand the question though he knew the answer. "What is the intent of the question?"  This is the clear struggle in social communication in autism. 

At this stage we used tools to help like chat features in Hangouts/Whatapp/Voice to Text/Canva etc,. The school allowed the teacher to explain the question to him. It really worked wonders. The teachers did not give away the answer but explained what was asked. School was willing to do it for a year. That was sufficient. He gained his courage to attempt a question. He now communicates well, participates in assembly and even questions "why" on many things. 

He graduated from sitting alone during picnics to sitting with someone. Its has been a long journey. I always plugged his ears when we rode in an auto. Last year before examinations, he asked if he could wear ear plugs during exams. Which the school agreed to. He even wears it when the class gets noisy. He even complains to the principal when the noise becomes unbearable for him. Its the courage to ask for what he wants for his senses which decreases his anxiety.

I can go on and on, on the little steps we took in building confidence in our child. We had to learnt a lot on the way and happily did so. Next year he will be taking his 10th CBSE boards. His 15th birthday was with his gang of friends.  2 very close and others who guard him as their own. Today he is away with his classmates, so I have the extra time to write this piece. One day I hope you too can write about your experience. 

During the whole autism journey, I have moved my career from IT Consulting at Cognizant post BTech from NITT to a professional Psychologist specialising in family based models. I help families implement - Parent mediated NDBI programs for their children 18m to 6 years. Have worked with families across the global to help children get school ready and more... Lets talk. +91 9819080507 

 *QoL is “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns"