“All the while, love makes giving up unthinkable”
Autism Spectrum disorders (ASDs) is a widespread spectrum involving developmental conditions such as delayed or impaired social interactions and social skills, delayed communication skills as well as behavioral and cognitive skills. ASDs range from mild to severe. This leads to a family going through unique challenges every day, especially the child with Autism. Here is the story of a family I knew, who have been living their life with Autism.
Sameer and Tina always knew that their son Aniket was “eccentric”. Aniket was a healthy boy, but his parents were worried about his development because he was not doing many things which children of his age are supposed to do like playing, crawling or jumping, mimicking expressions and gestures. Aniket’s parents tried hard to engage him with toys, songs and games but nothing would interest him. Although his hearing was perfectly fine after check up, he would not babble or make any baby noise or even respond to his name. They always felt that something is just not right with the boy since he was an infant. As an infant, he never used to make any eye contact. And by the time he was 18 months old, there were no signs or rather no interest in trying to walk, talk or even call out ‘Maa’ or ‘Papa’.
Even though they were convinced that something was wrong, the fact that their 3 year old son was diagnosed with Autism made it difficult for Sameer and Tina to digest the reality. Like other parents who have children diagnosed with Autism, they too felt agitated, anxious and worried about their son’s future. Though they wanted to live in denial but the constant incidences happening with their son could not be ignored.
It surely didn’t happen overnight. After the first shock which came to them about his diagnosis, it was time that they took a real hard look at Aniket. The realization that he had been autistic since the time of his birth was hard to accept. The initial symptoms observable were no response to name calling whatsoever, unable to express and staring constantly out of the window.
They felt extremely angry that they had a child who was this little ball of love and was lost in his own world. They still feel frustrated and angry about this situation, but whenever they found themselves in a fit of anger, they would think about Aniket, how he would be feeling? What kind of thoughts is he going through? What is it like in his world which they could not understand? That would give them the motivation to work towards Aniket’s development. They decided to put themselves together and not let him fall apart. They gathered all the strength and took up the challenge to provide the best to him.
Soon they received a formal diagnosis that their son had Autism. They were informed pretty much about just the diagnosis. The Doctor was pleasant but with an evident attitude ‘that there is not much which can be done with Aniket, life has to go on with this and you might want to approach some support groups’. This gave them pretty much a clear idea that now its time to take some hard decisions and start this journey.
One good thing about an early diagnosis is that you can set a target to help your child. The correct direction will not only help the child make progress but also give a ray of hope to the parents.
Early intervention is the key to success. Time is essential and the parents have to get going right away as soon as they get to the reality. They have to accept the fact that life is going to get different. The dreams that once you had for your child’s future will no longer be the same. In fact you as parents are going to build those dreams for your child. The task is indeed herculean for both parent and child.
Since the term Autism was new to them, Sameer and Tina took up extensive research in order to find out the possible causes and the next step to help their child. They read a couple of books on Autism and thoroughly researched on the net on similar cases and how parents addressed this issue about their child. While they were researching, they came across the biomedical approach to understand if their son was facing any medical issues co-morbid with his autism. They approached the city hospital and got a couple of medical tests done after consulting a pediatrician, but Aniket was completely healthy except slight gastrointestinal troubles and at times he had sleeping disturbances. So the entire question of the bio-medical approach: could some of these issues be caused by poor health; was not justified even though slightly prevalent. Sameer and Tina were lucky that they could find a good Psychologist referred by the pediatrician at the hospital. Autism just remained a psychological diagnosis in case of Aniket and required immediate planning and intervention.
Sameer was a well-established and educated professional working in a well-known MNC whereas Tina was an entrepreneur. Even though they were earning a good living for themselves, they realized that the process of intervention will strain financially on them and they had to learn to cope with a team of tutors and specialists full time. The treatment was expensive and the parents had to financially plan how to afford it by breaking their fixed deposits. They were mentally prepared that their saving will get exhausted way ahead of time.
After meeting with a psychologist, they approached a couple of speech therapist and occupational therapist to help Aniket overcome and work on his delayed developments. There were no classes specifically for Autistic children in normal school. They placed him in an early intervention classroom but had to face tremendous disappointment as the teachers didn’t know how to handle him, he would just sit at one corner and flap his arms. Next they tried to put him into an inclusive school but soon pulled him out of the school as it was difficult to manage someone with severity and Aniket was on the severe spectrum. Fortunately they found a renowned and successful Special School for Aniket.
The parents also realized that one of them had to devote his entire day to Aniket since he was too young and could not be left on his own. Parents had to make a choice between career and child. Tina left her job and decided to spend her entire day with Aniket and take him out for various therapies and intervention programs as suggested by the psychologist. The school, Aniket started going to, was a team of four talented special educators who began teaching Aniket a whole range of skills to help him learn the skills he had not yet learnt by this age and help him to generally function back in ‘real world’ again. The school followed the ABA program (Applied Behavior Analysis which is the application of the principles of learning and motivation from Behavior Analysis to bring about meaningful and positive change in behavior) which is the most effective intervention program for autism.
Aniket began to learn skills such as toileting, interacting through gestures and importantly for the parents, how to play and respond to them. Over a period of one year, he became better at this. There were a lot of dietary changes like removal of gluten and casein. Aniket became more focused and was able to concentrate on learning things. Sameer and Tina were keen on continuing both the biomedical options as well as the ABA programme for him. It is going to be a life long process but there is hope and there will be improvement and progress happening at every step.
The parents were determined to design a home-therapy program too, Sameer went out-of-the-way by doing some online research, making phone calls to hundreds of psychologists and specialists in the field and attending various conferences. Meanwhile, Tina used to spend her entire day besides Aniket, reading and talking to him, kissing and hugging him and stroking his back. “They desperately wanted to keep Aniket in their world”.
However, Aniket did not talk until the age of 5. Sameer says, Aniket probably does not understand the importance of language, most of his interaction was through actions and gestures. The parents made a series of laminated pictures of food, household objects, places and actions and Aniket could use to express himself. Aniket finally started talking at the age of 6 but the words were unclear. However, the parents never gave up until they figured out what Aniket was trying to say. Now Aniket can say three to four letter words which is difficult to understand, but he can say words like ‘no’, ‘hello’ and ‘please’ clearly. Despite Aniket’s steady improvement, Sameer and Tina don’t hold out hope that their son will even get into a high paying job or live alone. They dread the thought that Aniket will have to live without them someday.
The parents know how difficult it is for parents of autistic children to figure out what is best for their child with Autism. Sameer and Tina have by now approached many support groups and created parent forums where they share their story with other parents on the same boat. They continue to attend workshops and conferences which will help them understand Autism better. Their research on Autism will continue for the rest of their lives so that they can provide the best to Aniket.
Now, just a year later, they are thankful for getting Aniket diagnosed early. Without the diagnosis it would have been only bouncing from one doctor to another and lost in the mystery of diagnoses and mostly missing out on what is required for Aniket to fulfil his needs. After the good 3 years of treatment, Aniket has shown great improvement and is learning more and more about the world around him.
Tina spends every day few minutes to take care of Aniket’s business, sweat dripping from her forehead, arms aching and headache approaching. She feels relieved that the ordeal has ended and fortunately they have managed it quite well. Aniket gets dressed on his own these days and eats his food on his food, talks to Sameer and Tina using his broken words, just enough for them to feel the love and satisfaction that Aniket can speak. They are happy that he makes direct eye contact, something which took years of training and practice. Their fear has been replaced by hope and faith that as parents they can build a better world for millions of kids and adults like Aniket.
Aniket is beaming with radiant smile. Today Aniket is 8 years old and he is in a good mood.