A Father’s Journey with Autism: Early Days and Diagnosis

I am Srinibash, a 57-year-old man from a middle-class family in Delhi-NCR. My wife and I are the proud parents of an adult autistic daughter, Simi. Raising her for the past 21 years has been a beautiful yet challenging journey filled with immense love, learning, and acceptance.

Today, through this blog, I want to share our experiences, hoping to offer guidance and support to young parents who have recently received the diagnosis of autism spectrum disorder (ASD) in their child.

The Beginning: A Dream Start

When our daughter, our firstborn, arrived, our hearts overflowed with joy. We meticulously followed every doctor’s advice, ensuring her a healthy pregnancy. Every ultrasound and test confirmed a healthy baby girl, growing right on track.

However, a few days before her due date, a chilling fear gripped us. The baby’s movement ceased for several hours. Rushing to the doctor, we were relieved when movement resumed. Though the doctor assured us everything was fine, a tiny seed of worry had been planted.

Our daughter entered the world through a caesarean section. Initially, she thrived. But due to negligence at the nursing home, she suffered a severe stomach infection, requiring high doses of antibiotics. Years later, we learned this high dosage was unnecessary.

Despite this early hiccup, she met her developmental milestones on time. She babbled, crawled, and even hummed songs, filling our lives with music. We were ecstatic, oblivious to the challenges that lay ahead.

The Turning Point: Regression and Red Flags

Around 1.5 years old, we noticed a regression in her speech. She started uttering meaningless words, fixated on specific areas. Lacking knowledge about autism, we attributed it to a temporary phase, confident she’d soon be back to her chatty self.

However, by age 2, some red flags became impossible to ignore:

No eye contact
No response to her name
Self-talk with gibberish
Toe-walking
Repetitive play, lining up toys in a specific pattern
Obsession with TV commercials
Social isolation
Inability to call us “Papa” or “Mummy“
Difficulty recognizing herself or us in photos
Hyperactivity, unable to sit still for more than 5 minutes
Repetitive actions, like throwing stones in water for hours
Despite these challenges, Simi’s intelligence and emotional attachment shone through. She understood the use of locks and keys, door-opening mechanisms, and dressing herself. We were clueless about the invisible world she inhabited.

Little did we know, this was just the beginning of our extraordinary journey with autism.

From Play School to Diagnosis

My daughter, was a bright child. She could pick up on TV ads and recite slogans word-for-word. But when it came to social interaction, she struggled. She wouldn’t respond to her name, make eye contact, or play with other kids. At two and a half, we put her in play school, hoping it would help her blossom.

The school principal’s words were a gut punch. “Take her to a doctor,” she advised. “She might have a hearing problem.”

We were sure she could hear, but we followed her advice. After initial investigatios, Doctor advised to do a IQ Test at Guwahati Neurological Research Centre (GNRC). We visited GNRC and took her to a Clinical Psychologist who did a test called VSMS (not IQ test) as she was not responsive and said her Social Quotient (SQ) was 37 which implies she is mentally a 1 year child although her age is around 3 years. She diagnosed my daughter as an ADHD child (Attention Deficit Hyperactive Disorder). She informed that there is medication available for ADHD but can be given by a psychiatrist after my daughter attained 5 year age. She advised to take the help of a speech therapist & behavioral therapist. We tried to search for the same in and around Guwahati.

Finally, we got a therapy center at Guwahati Medical College (GMC) and visited there for a period of 1 month on daily basis, but didn’t notice much improvement. My daughter was very reluctant to therapies and used to cry throughout. The Clinical Psychologist mentioned in her prescription that my daughter is MR (Mentally Retardation) with Mild Autism. Though, we didn’t take it literally.

Subsequently, on the advice of a Child Specialist we visited a Psychiatrist (HoD of Psychiatrist Department of GMC). He after examination confirmed the child is ADHD and prescribed Mentat syrup and Dipsonil for a period of 3-6 Months. I then prepared a detailed medical history file of my daughter and sent to one of my relative working as Professor at AIIMS New Delhi for his opinion. After few days I got a call from Head of GNRC as my relative referred my case to head of Neurologist at Guwahati Neurological Research Centre (GNRC). I visited him and he also confirmed that there is no abnormality with my child however advised me to see a Clinical Psychologist joined with GNRC recently.
We met her and while discussing with the Doctor in her chamber, my daughter tried to reach out to her Desktop but we resisted her. Doctor told us not to interfere as she was observing her behavior. Whenever my daughter tried to go near the PC, she hold her both arms and obstructed her and not allowed my daughter to go there. My daughter tried a lot but pushed away by the doctor and hence she cried vigorously in this whole process.

Doctor asked us to come next day with our daughter for further investigation and report. On reaching home we noticed scar mark with injuries below the arm pit of my daughter which was caused by lifting by the doctor. My wife was very upset by seeing the injuries.

Next day we again visited the Doctor and I was about to ask her regarding the injuries of daughter, but before that she enquired whether we noticed any change in behavior of our daughter. Yes, there was change. Although she was very excited about the Desktop but was not tried to go there. I informed the same. On hearing my reply, the comment of doctor surprised us. She told that she had applied PAIN THERAPY to modify her behavioral issues. We became confused and want to know more.
Her diagnosis was my Daughter is a case of Pervassive Developmental Disorder (PDD) and it could be AUTISM. As told earlier, the word AUTISM was very new for us so I enquired to know more about it. Doctor advised me to go through Internet to know more.

Doctor after doctor, therapist after therapist, we sought answers. Labels were thrown around like confetti: ADHD, mentally retarded, MR with mild autism, Pervassive Developmental Disorder (PDD). Each diagnosis felt like a blow.

Though the word “autism” was new, scary, and confusing for us. But as I researched more, the pieces started to fit. Her repetitive behaviors, her echolalia, her struggles to connect – it all made sense.

The fear of our daughter being nonverbal for life loomed large. The doctor’s words ignited a fire in us. Our journey began, a winding path of therapies and interventions.

In the next blog, I’ll share the ups and downs in this journey, from tears in therapy rooms to breakthroughs big and small. I’ll talk about the therapies that helped her, the challenges we faced, and the unwavering love that fueled us forward.

(To be continued)

Author Srinibash Mishra

Edited by Shilpi Mayank Awasthi