When Doctors Blamed Everything From My Work To An ‘Autism Gene’ For My Child’s Autism

Did I fail my child by being a working mother? Or did the medical community fail my daughter and her parents with its misogynistic biases and lack of empathy?

“Were you under some kind of stress during your pregnancy?” the child psychologist asked.

I inwardly squirmed. It was the same question from the mouth of a different doctor.

The year was 2014. Two years earlier, my four-year-old daughter, Avantika, was diagnosed with Autism Spectrum Disorder (ASD), turning my and my husband’s world upside down. As a twenty-six-year-old, I was overwhelmed by jargon like Occupational Therapy, Sensory Assessments, and Early Childhood interventions, that the doctors were throwing.

No pathological test detects ASD, and the doctors primarily rely on the inputs of the parents to arrive at the diagnosis. After multiple arduous discussions regarding the diagnosis, our focus shifted to getting the best treatment for our daughter. We visited many specialists across reputed hospitals in the Delhi-NCR region in our endeavour.

A ‘working mother’ was identified as the big problem

As a mother, I was prepared to do the best for my child. What I wasn’t prepared for were the judgements and the misogyny.

Every neurologist, psychologist, therapist and specialist we consulted for treatment had a standard set of questions, and answers, for the child’s mother—me.

“The working women of today don’t realise the importance of being stress-free during pregnancy. You should have taken leave from work earlier,” the doctors said. The maternity leave in India Inc was three months at the time, and wanting to avail the bulk of it after my child’s birth, I had worked till about ten days before my delivery. Apparently, that was a mistake.

“You need to quit your job and stay home with your child for her normal development,” they continued. Why then prescribe a bunch of high-cost therapies? For a middle-class family living in a metro, wouldn’t the combined burden of regular living expenses and hefty daily medical bills be too much for one earning member? No one was bothered.

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“You are not able to give enough time to your daughter since you are working,” the therapist nonchalantly remarked to me while working with Avantika. Never mind that I was leaving the office two hours early twice every week to take my daughter to therapies. But that wasn’t enough.

‘Your husband must blame you for this predicament!’

Our weekends, when not taking turns to accompany Avantika for interventions, were spent researching Autism treatments, centres and doctors. Our quest for that elusive cure took us to multiple homoeopathic, allopathic, naturopathic and ayurvedic practitioners. No one had a solution, but everyone seemed to know the cause — a working mother.

“Were you under some kind of stress during your pregnancy?” The psychologist repeated her query, bringing me out of my reverie. She was the twenty-fifth doctor I had been referred to.

“I was following my normal work routine,” I replied.

“So you work. Is your work hectic?”

“Yes, it was, at that time.”

“There you go. That affected the child,” she said, triumphant.

“How can my daughter get better?” I asked.

She paused, looking uncertain for the first time in our conversation. “She needs occupational and speech therapy.”

“She has been going for these therapies for two years now—at multiple centres and at the special school she studies in. There hasn’t been any significant improvement. What else can be done?”

“You must quit your job and spend time with her at home. Your daughter’s autism will get better.”

My heart sank. Not because of what the doctor said—I had gotten used to it—but because another door for my daughter’s treatment had been closed. “Ok, thank you,” I said, preparing to go.

“Does anyone from your or your husband’s side of the family has autism?” she asked.

“My mother’s youngest sister. She is no more now,” I replied mechanically, wondering how the past was relevant for the future course of action.

“So the autism gene runs in your family. Your husband must be blaming you for the predicament you have put your family into.”

I couldn’t believe my ears; the doctor’s words felt like a whiplash.

Until I took matters into my own hands

There is no known cause of Autism to this day; it is one of those mysteries that medical science is still trying to solve. But that didn’t stop the medical community from blaming a mother for her child’s developmental disorder.

It was after a considerable effort that I found my voice again. “No, my husband has never blamed me for anything. Only you have uttered these words,” I replied, walking out with my head high.

Once back in the safe confines of my car, I broke down.

“We are not going to any other doctor for Avantika’s autism,” my husband told me firmly that evening after I narrated the incident to him through my tears. “The doctors here have no remedies for Avantika’s autism, and I don’t want either of us to break down because of this unnecessary stress they are putting us in. We have to stay strong to support our daughter.”

Thus, two years after our daughter was diagnosed with ASD, we ended our quest to find a suitable medical professional for her treatment. In the absence of any other known line of action, we continued with the therapies, accepting that she may never speak.

Time flew, and six years passed before I gathered the courage to consult doctors for Avantika’s autism again—this time from abroad. As a woman in my mid-thirties who had co-parented an autistic child for ten years, I was more confident and assured. It helped that the doctors outside had more experience with ASD and were more sensitive in their communication.

Today, I have accepted the past and live in the present. My husband and I have made peace with our daughter’s ASD. But some questions keep nagging me when my mind wanders to the past.

‘Did I fail my child by virtue of being a working mother? Or is it the medical community that failed my daughter, and her parents, with its misogynistic biases and lack of empathy?’

I am not sure if I will ever get the answer.

Editor’s note: Women regularly face #MedicalMisogyny from health care professionals. For the WHO World Health Day 2023 theme of ‘Health for All’, identifying this misogyny and ensuring #Equity in healthcare is essential. All of April, we will be sharing stories with you on this these, either personal stories or fiction. Find them all here.

Image source: pixabay

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About the Author

Smita Das Jain

Smita Das Jain is a writer by passion who writes every day. Samples of her writing are visible in the surroundings around her — her home office, her sunny terrace garden, her husband’s car and read more...

41 Posts | 51,486 Views

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