The number of autism spectrum disorder cases is steadily on the rise globally and most advanced nations have developed the medical intelligence and infrastructure to deal with this clinical condition. In India, unfortunately, awareness about it remains abysmally low till today.
Most parents do not know about ASD and ADHD or may have heard about the terms in passing – and are naturally, more often than not, completely stumped when their offspring is detected with either.
The obvious challenge about ASD is the fact that there are no pathological tests available so far for the detection of the condition, and no two cases are exactly alike.
However, it does not mean that the basic process of confirmation of autism should be a harrowing and traumatic one for either the patient (usually a small child) or the parents.
In this blog, we tell you about parents’ experiences related to the process of diagnosis to detection of autism. Most who spoke to us have been subjected to considerable confusion, discomfort and as well as shock at various stages through the journey of confirming the clinical condition of their offspring.
In one case, by the time they received the news, they were so exhausted and shocked that it turned into a matter of concern for the little one – who while coping with her own disorder also had to deal with traumatised parents and their obvious behavioural change.
Parents have narrated and shared their very personal experiences here only to enable others like them make better informed and confident decisions in their journeys with an autistic child, a journey that is full of learnings for both parents and the child along every step of the way
Souravi Sinha’s story
Souravi, a senior HR professional with a multinational firm, shares the difficult process of bringing up her baby daughter in the initial years after her birth. Ashita, Souravi’s daughter, was born in 2018 as slightly premature baby and the infant was lactose intolerant and prone to infections of the urinary tract right from the start. Within the first 5 months of her birth, she suffered from UTI and was put on prophylactic antibiotics, which was discontinued when she turned a year and a half. This was towards end- 2019. The doctors felt that she was stronger and no longer required the medication, However, in June 2020 the UTI recurred, though milder than before, and it led to a resumption of antibiotics once again.
Apart from all the investigations, consultations and medications, the parents had to routinely take the infant for USG examination at 3- month intervals, and closely monitor her bowel movements and bathroom habits.
In October 2020, little Ashita suffered from a skin infection that aggravated her already compromised health condition. She kept itching and scratching her skin frequently, waking up in the wee hours of the morning due to the acute discomfort. Her already agonised parents had to add dermatologists’ visits to their long list of doctors on priority. Thankfully, with timely intervention and correct medication, the little girl was soon cured of her skin condition.
Says Souravi,” Ever since her birth, we were so engrossed with constantly attending to the baby’s immediate medical concerns and needs that we could not keep a look out for the usual developmental milestones. It was only towards end- 2020 that we realised that Arhsita was not using words to communicate with us. She did maintain eye contact, but there was no inclination to use words, leave alone sentences in her interactions with family members. We also sensed a poor response to external stimuli.”
2021 set in. The previous year, 2020, had been a challenge for the child and her parents as the world was caught up with the onslaught of the deadly COVID-19 and the ensuing lockdowns.
Her parents, after some observation, took her to an ENT specialist, already puzzled at her behaviour and delayed speech. The doctor, not identifying an ENT issue, referred the child to a psychiatrist. Here, once again, they were in turn referred to a speech therapist. As it turned out, the therapist worked only with adults and they were, once more, referred to a speech therapist for only little children!
Finally, there was light at the end of the tunnel here. They were advised to do a Psychometric Evaluation Test for Ashita, where it emerged that the child was thankfully not on the spectrum but was a late developer, her developmental process being delayed by 7 months.
That done, Souravi and her husband heaved are now determined to focus on the little one’s balance health issues. But she still feels acutely about the confusion, time, energy, and funds that were all part of the process to determine whether Ashita was on the spectrum or not. She sincerely wishes that a more streamlined process of diagnosis and detection should be developed in India.
Sohini Sen & Sagnik Guha’s story
Modern, educated and urban is how one would describe this couple who are both busy professionals in their own right. Sohini is the branch manager of a leading nationalised bank while Sagnik heads operations for a retail chain in Dhaka.
Listening to how they discovered that their only child, nicknamed Gulu, is autistic and then life afterwards is an experience. It is a disturbing tale of how incorrect or inaccurate advice leads to family members running from one centre to another, on the advice of assorted medical professionals many of whom have scant time for their patients or families.
At the same time, dealing with elderly parents are home who are more than shocked to hear of any disorder in their beloved grandchild. Not to mention their own state of unhappiness and depression.
It could happen in any household – yours and mine included. Which is why in this candid conversation, the parents gave clear and reasonable guidelines to follow with a view towards making the journey less painful for others.
Gulu was born in May 2018. As per her parents, she was like any other child initially – happy, active, eager to learn and participate. Early on, she also became inclined towards music and loved dancing to tunes at a year and half.
However, beyond this, the parents noticed that she was not interested in speaking to anyone. On closer observation, they realised that their apprehension was true. There was no speech development in the baby, then aged about 2 years.
Unfortunately, there was not much that could be done straightaway, as this was in the later half of 2020 when the country was being ravaged by Corona virus. Physical consultations were largely suspended owing to the national lockdown.
The parents spent sleepless nights, trying to fathom what was ailing their child and how to find a solution.
Once the curbs were relaxed, they embarked on a rather confusing process of several tests based on recommendations of myriad specialists. Between February to June 20201, there were innumerable trips to doctors’ chambers and diagnostics. They opted for both physical consultations as well as virtual ones.
Only towards end July’21, could they conclusively ascertain that their child was autistic.
Since then, Sohini has intensified her attention towards the child. A finance professional, she was successful as a young branch manager. Now, she says her career is secondary to Gulu’s wellbeing. She has consistently refused promotions as the child requires extra attention and specialists have stressed the importance of a parent taking on the role of the primary caregiver.
Sohini describes herself as the ‘bad cop’ in ‘relationship of Gulu with her parents, whereas Sagnik assumes the role of the ‘good cop’. With a mix of firmness, leniency and kindness, she manages her little one with the sole intention of making her a confident, happy and independent individual when she grows up.
In fact, she tells me, that she is even considering an unpaid, permissible sabbatical for up to 2 years (permitted to female employees only once in their entire career in her organisation) from work to give more attention to Gulu for the next two years.
“She will need to attend a variety of classes and examinations to ascertain her progress over the years, that are crucial to her physical and mental wellbeing. Moreover, at home too we need to incorporate special regimens for her,” she says. “I would prefer to go through the process with her myself, rather than delegating it to someone else.”
Even though there may be grandparents in the house, specialists are generally of the opinion that if a child is on the spectrum, a parent is best suited to take on the role of a primary caregiver.
The journey is a long and challenging one, but Sohini and Sagnik are determined to do their best for their darling Gulu.
For the convenience of other parents in the same predicament, here are some invaluable tips from the parents –
- The news of your child being autistic can come as a big shock, quite capable of completely throwing you off balance, leading to a major emotional breakdown and affecting your mental and physical wellbeing. Do not hesitate to reach out for expert help and counselling, so you emerge as a stronger individual, a parent quite equipped to deal with the situation.
- Use your immediate and extended sources to locate the right specialist. The importance of this cannot be emphasised enough. It is not possible to list dos and don’ts here because each child’s case is unique. Use your intelligence sources gleaned from your trusted friends, family and business contacts to locate the best doctor and therapist.
- Be completely prepared to provide full-time attention to the child. This will likely call for major adjustments in your career and lifestyle. You must be willing to go the whole way for the sake of your little one.
- Be committed to constant monitoring.
- Focus on the process and be clued to the smallest of changes, both positive and negative. Timely intervention will ensure faster diagnosis. At the same time, a fine balance needs to be drawn between observation and patience. At no point, does impatience help either you or your child.
- Quit comparing your child with any other. This may lead to unwanted frustration and must be avoided.
- Turn a deaf ear to society’s myriad, non-medical noises. There are many well-meaning, non-medical individuals who will doubtless come forward to share their stories, life lessons, personal experiences or offer advice and suggestions. It is best to avoid giving in to such advice. which may or may not be relevant or helpful to your management process.
Did you find these real-time parents’ experiences and advice inspiring and useful? We hope to continue with the series, bringing to you true stories from parents in different cities of India and abroad.