Written by – Dr. Ida Menezes
Edited by – Disha Harsha
On 1 May 2024, a beautiful, innocent 7-year-old girl, entered the consultation room wearing headphones and a chewy necklace. Despite several attempts from her mother to greet us, she showed no verbal response, gesture, or eye contact and appeared unresponsive. She was restless and unable to sit for more than a few minutes. She exhibited sensory-seeking behaviors and was chewing something or the other or her own clothing. Her headphones were not for music like us, but for her overwhelming hypersensitivity to loud noise. On her first visit, she whined, screeched, and circled the room despite unsuccessful attempts by her mother to redirect her behavior. These actions mirrored her typical behavior at home, as confirmed by her mother. It was IMPOSSIBLE TO MANAGE HER……..
It was heartbreaking to hear that she had NEVER tasted any RAW fruits or vegetables except for a few grapes. Smoothies with dry fruits were forcibly fed due to her hypersensitivity to texture, smell, & messy foods. She was on various naturopathic supplements and drugs for sleep and behavior related to autism. Despite her other hypersensitivities, she also had sensory-seeking behaviors like sniffing and caressing. Her auditory hypersensitivity led to social isolation, and they had to avoid gatherings, loud sounds, or music. She displayed disruptive behaviors, frequent tantrums, and prolonged meltdowns, always lasting over two hours. The parents were desperately seeking help, unable to manage or identify her triggers. Her autism school reported similar meltdowns, including disruptive behaviors like screaming, screeching, and whining. Just like I witnessed the first time I saw her. Her destructive episodes even damaged expensive gadgets at home.
Aside from struggling with textures in food, she also faced significant challenges with meals, which required her mother to feed her all meals and snacks and assist her with washing her hands and herself cleaning after defecation. Though toilet-trained, she often soiled her underwear and needed help. She required full guidance and assistance for bathing, brushing her teeth, combing her hair, dressing, and wearing her shoes. She was unable to organize toys, materials, or daily essentials, and needed total support for all activities of daily living (ADL).
She showed no emotional expressions except crying in all situations, including pain or illness. She struggled to communicate emotions or basic needs, relying on occasional hugs initiated by her mother, reflecting helplessness. Problem-solving or addressing her difficulties was often replaced by a sense of helplessness.
The poor girl appeared as if all of her senses were blocked. Her cognitive functioning seemed minimal, her vocalizations were irrelevant and meaningless, and they were only for throwing tantrums. There was no communication or socialization, even with close relatives like her aunt, uncle, cousin, or her younger brother. Despite attending an Autism-specific school for years, she had little progress. She could identify some English letters and words. Her tripod pencil grip was undeveloped. She held a pencil using all five fingers. She recognized numbers and number names and could identify colors, shapes, but not sizes. Her coloring strokes were good, but she could not maintain boundaries. She could not hold scissors, didn’t develop cutting skills, and couldn’t use a ruler to draw straight lines. Though she could match objects and sort items by color and shape, she performed these tasks with little compliance or interest.
Her parents expressed deep sorrow, pain, and helplessness regarding her condition, as well as the strain it placed on their family dynamics. They highlighted the impact on their younger son, & the challenges of providing demanding care for her. Attending social gatherings and even planning simple outings, like a family meal, had become extremely difficult. They expressed their last hope in seeking an innovative approach, having heard about its promising outcomes from close friends.
Magic Begins
From day one to eight weeks, a one-on-one Individualized Educational Program was started with an innovative integrated approach targeting various domains for modification. Initially, she had behaviors like resistance, crying, running away, tantrums, and difficulty sitting still, despite being in an engaging environment. She had challenges with following simple verbal instructions which included comprehending her environment and social interactions. Understanding basic concepts like ‘yes’ and ‘no’ was beyond her ability. As the intervention progressed, she was transitioned to group sessions, preparing her for a classroom setting. She learned to understand and follow instructions in a group, became more aware of others’ reactions, and managed not to get upset when instructions were directed at others.
Her attention skills improved significantly, allowing her to focus on specific stimuli while ignoring distractions. She became more enthusiastic about classroom activities and could sustain attention while doing boring math, even when her peers were engaged in fun activities that she also personally enjoyed, like drawing and coloring the most.
Her progress in activities of daily living was notable!!
She learned to independently manage tasks such as changing shoes, greeting others, organizing her school materials, and eating snacks in the classroom. She mastered waiting for breaks, using the washroom independently, and participating in class assemblies, including following prayers, exercises, and singing.
In communication, she progressed to expressing her needs verbally, using words, phrases, and short sentences.
At Home, her overall behavior improved and she reflected improvements both in structure and routine. She can now follow two-step instructions and rarely requires repetition. She learned to differentiate and comprehend basic responses like ‘yes’, ‘no’, and ‘don’t want’. She is now able to communicate effectively with her family, including her grandparents and extended family. She also showed remarkable improvements in emotional regulation. She was able to manage emotions in various social situations, such as dining in a restaurant, participating in a drawing competition amid noise, and attending events as part of an audience.
The family even had a dog, to which she showed no prior attachment nor any emotional connection, despite the dog’s multiple efforts due to her sensory issues and lack of emotional understanding. However, now she pets him, hugs him, and is attached to the dog. She now genuinely has begun to understand and connect not just to the dog, but many other people and things.
Today I write this as she has already left for Australia, as her parents are now confident enough to enroll her into mainstream school with her peers after her improvement. One morning I woke to this beautiful message.
“Hi, Ida. We reached safely and she was so well behaved all through the flight. She listened to her music, slept well, and followed all of my instructions. I was so proud of her. At no point did I have to explain that she was on the spectrum and all and apologize to people for any disruption. My little girl has definitely grown up. We got home and her younger brother was over the moon. He talks constantly and I am trying to get the kids more involved in each other. I can’t force it but trying to do more activities together. We are still a bit jet-lagged, but hopefully, we will kick that in a few days. She is happy. She cried once or twice but seems to be finding her groove (and voice) here. Love having both my kids with me together and can’t tell you how happy that makes me. I hope you are doing well too. I will touch base with you on the 2nd as planned for our therapy session. Until then, I hope you and your family have a wonderful time celebrating the new year. Much love and regards ❤️❤️❤️”
And the rest of the story is yet to be written…….