I am ashamed to admit that for the longest time I did not know much about these things – not until they became sort of personal. That happened when I became close to a family that has an individual on the spectrum.
When I first met this young man, I was fortunate enough to have been given some guidance on how to engage by an expert. It was still somewhat difficult for me to try and connect with him because, like with many who are Autistic, there was some social awkwardness in our initial interaction. Over time I realized that patience, genuine empathy, and a willingness to adapt were key to a meaningful relationship.
I realized that his purity of thought was unsullied by the trappings of what we often mistake for etiquette and expected social behavior – a refreshing outlook and gave me a reason for introspection.
Those who have suffered because society is not ready to accept them as they are, know that we must change minds and win hearts, one at a time. This young man could have become a statistic like the ones mentioned above. Fortunately, he didn’t. What’s more, he and his family want to share his story – a story of pain and patience, a story of struggle and reconciliation, a story of love, and ultimately of success. This is special for me because I have witnessed some of this journey myself.
To underscore the narratives of families with individuals on the Autism spectrum during this Autism Awareness Month, I helped curate a short film, Bobby.
Bobby is a fictional story based on key real-life events and experiences. The young man in the film, Bobby, is played by actor, Amogh Karwar. His mother’s role is essayed by Bay Area stage and screen actor, Sareeka Malhotra, and the father is played by yours truly. Produced by Prana Pictures, this short film has assembled a diverse cast and was bravely filmed facing the challenges of the coronavirus pandemic by observing strict safety protocols. Leading the efforts of an immensely dedicated team of cast and crew was Amir Jaffer, a prolific filmmaker in the Bay Area. The film is expected to be released later this year.
My personal journey with Bobby and the process of bringing this short film to life has helped me be more appreciative of the abundance of talent that so many on the spectrum have to offer. If we all took the time to understand Autism a little better, we are certain to create the conditions conducive for so many more success stories.
For the STEM-obsessed Indian American community, especially in the Bay Area, I’d like to remind folks that Albert Einstein is believed to have been Autistic…
Puneet is an actor based in the San Francisco Bay Area. He has performed in several theatre productions as well as in a number of films and series. He is currently excited about bringing forth a film about autism. You can find his work on Amazon Prime, Disney+ Hotstar, and YouTube. You may connect with him on Facebook, Instagram, and Twitter – @thespianpuneet.
This past year has been a series of ups and downs. My daughter Siri, who has Autism and requires routine, has had to adjust to the changing world around her. Every April during Autism Awareness Month, I share my experience as Siri’s mother and our challenges, so that other parents going through something similar can resonate with our stories and see progress.
Before the pandemic arrived, Siri was busy with many activities like functional fitness, boxing, ice-skating, horse riding, and her internship at Goodwill. She is the type of girl who loves to learn new skills and looks for opportunities to keep herself busy.
Naturally, when the pandemic began, we were very worried. We knew that if Siri was bored, she would turn to food as an unhealthy crutch.
To our astonishment, on the third or fourth day into the lockdown period, Siri completely stopped eating and only sought a couple of snacks a day. With both her younger brothers back home during the pandemic, Siri started enjoying their presence in the house. She happily watched them do their zoom classes and ate what they cooked and shared with her. Eventually, we started seeing her shirts and pants fall off her shoulder and hips – all her clothes were extremely loose. We checked with her physician and she said that as long as Siri looks happy, healthy, and is sleeping throughout the night, that we should not worry.
She was so independent that we felt like she had already moved out. The girl who would make her presence known by being loud or pacing when bored had suddenly changed. At one point, we were concerned because we wouldn’t see her often. And when we did see her coming out of her room, she would be happy and humming a tune. She even gave spontaneous hugs to me!
Since her anxiety was at a lower level, I began to teach Siri new skills. We began with some stitching using easy, simple, and small steps. I trained her to make masks and we donated 150 to Saddleback Church in Los Angeles. Siri was so happy to cut the fabric, thread in the needle, and stitch in the way I wanted her to. Her beautiful face glowed as she was packed the masks with a handwritten card inserted in each bag. She started showing interest in drawing and painting too. Later on, we introduced Siri to zoom classes where she was able to do some Bollywood dance, artwork, and also music.
We, along with a few more like-minded families with special needs kids are working on a community in Sonoma County. We want her, and children like her, to live full, healthy lives without needing their parents for support. In pursuit of this, Clearwater Ranch is developing a program for adults like Siri. Siri, along with three more special-needs young women, will be moving into a house on the ranch by the end of this year.
Since Siri’s ability to understand the language is affected greatly by her Autism, we are teaching her about her move by taking her to the ranch every other week. We do drive-thru tours for potential families interested in joining us. We explain the process by showing the homes and talking about the future plans for the ranch.
Our plans for Siri do not stop once she transitions to a new place. Fortunately, this beautiful piece of property sits on an 84acres of land where we plan to develop programs to provide skills to the special-needs residents. We plan to teach them weaving, candle and soap making, painting, farming, pottery, while continuing to focus on their fitness and recreation activities too.
Siri’s future is bright and promising!
Join us by following her journey via her Social Media:
This poem was written as a response to the piece Navigating Autism. I was moved by what Swathi Chettipally had written and I thought, “life goes on with all its ebbs and flows, perhaps accentuated at this challenging time, for children with disabilities/differently-abled and those with chronic illness.”
Veiled and Shut
The sing-song of your, ‘mama’ rings in my head
The blithe spirit numbed
Now so lonely in a crowd
No joy gladdens
No fears felt?
These distant eyes
That once spoke
Mystic, shut, veiled
What thoughts repressed
And brilliance locked
What love burned
And pain muted
Oh, lament unsaid…
No tears shed,
No laughter spread…
The sing-song of your, ‘mama’ rings in my head
Madhu Raghavan is a pediatrician who enjoys writing, exploring our great outdoors, gardening, and art as a pastime. She is also the artist of the featured image.
As a mother of three beautiful children, Siri, Vamsi, and Kiran, shelter-in-place has been a time to find positivity in the difficult moments. While Vamsi and Kiran are in college, my eldest daughter Siri never left home.
This past April 2, 2020 was Autism Awareness Day and a few weeks into the ongoing pandemic frenzy. Initially, I couldn’t help but think that this shelter-in-place should come with more help for moms – especially for those that have children with disabilities.
Siri was diagnosed with Autism when she was 3 years old.
Before shelter-in-place, Siri was involved in several activities: ice-skating, exercising, boxing, fitness dancing, ABA therapy, working at Goodwill, and attending a day program. For the past six months, I have accompanied Siri to all her activities except her day program. Since most of them are fitness-oriented, she was showing considerable improvement in handling her emotions, and so we gradually tapered her medications for anxiety.
Around the time when shelter-in-place was declared, Siri was at the peak of her fitness regime, and we were approaching zero medications. But, now, since all her outdoor activities are inaccessible, I feared we might have to start her medications again.
To my surprise, there was no necessity to bring her medications back. Furthermore, she got adjusted to the new schedule within a couple of days. She noticed that her brothers were at home and she adapted to the new lifestyle of no outdoor activities.
On the Autism spectrum, my daughter’s main challenge is understanding language; Siri cannot communicate much. For example, if we tell her why she cannot go out, she may not understand or might misunderstand, and her anxiety will increase since she cannot ask clarifying questions. My husband and I have decided to let her learn by herself, letting her observe her environment.
Siri keeps herself busy by working on her online jewelry making business, which she started 5 years ago. What she lacks in her ability to communicate, she more than surpasses in her fine motor skills.
Currently, in this period of shelter-in-place, I am teaching Siri to stitch masks for the COVID-19 workers and once the SIP is lifted, I have plans to teach her horse riding, weaving, soap, and candle making. Autism doesn’t have to be a barrier. It requires creative ways of teaching. Siri can learn any new skill if taught the way she understands. Small and simple steps.
Considering that I regularly make decisions for her and motivate her as well, it often worries me, will she be able to manage without me? Nevertheless, during this shelter-in-place, the silver lining is that Siri is gradually becoming independent and is without her medications. These are the small assurances that remind me that, even without me, Siri will emerge much stronger, confident, and better than what she is today.
My family wants to share our story as a South Asian, immigrant family confronting Autism. It has been a unique and challenging journey.
If you’re interested in helping us fund the documentary, you can donate to our kickstarter campaign.
You can find the amazing work Siri is doing on her website.
Swathi Chettipally is a devoted mother and an Autism advocate. Find more about her work with Siri on pinterest, instagram, and youtube.
“I’m sorry to inform you your child’s psychological age is at 9 months … ,” Laxmi and Narendran were numbed by these words even as the child psychologist talked on about expressive vs. receptive verbal skills and cognitive abilities; or in their son’s case, disabilities. As their mind tried to grapple with the words, Ravi, their almost 4-year-old, held up his toy car and rotated its wheels, over and over again. Drowning in a feeling of doom and darkness, Laxmi heard herself ask “What can we do to … to …” She remembers that she did not even know how to complete the sentence. All she could hear is the roar of sheer terror for her child and for their family; the pain of dreams aborted and a feeling of wretchedness setting in.
Thus begins the official journey of every family whose child gets diagnosed as being “autistic” at 18 months, two, three, or even five years. Autism is a neurological disorder that sets in within the first three years of life and impacts normal brain development in the areas of social interaction and communication skills.
Autism is approaching the numbers of an epidemic. The figures are staggering—in the 1960s, four in 10,000 children had autism. Today, according to Autism Speaks, an organization dedicated to facilitating global research into the causes, treatments and an eventual cure for autism, one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. U.S. government statistics suggest the prevalence rate of autism is increasing 10-17% annually. The website, Talk About Curing Autism (TACA) states that eight new cases are reported each day in California alone.
And autism is by no means an “American thing,” as disbelieving desi grandparents of autistic children will claim. The Autism Speaks website states that about 1.7 million individuals are autistic in India. A CNN article in early 2008 reported that autism is affecting one in 58 individuals in England and Ireland.
So, what is going on? Is it just the modern over-emphasis on labeling? The causes of autism are still hotly debated among scientific and familial circles. What has been proven is that there is no commonality of cause among the children affected (it is not necessarily genetic), though there are many theories—some reports claim environmental pollution such as chemical dumping into the water table as a factor. Some parents believe that indiscriminate use of vaccines is to blame. “Shilpa was a vivacious child, babbling and making gestures all the time. A week after her 12-month shot, she was a withdrawn child. She regressed completely after that—now, she cannot even say bye bye,” grieves mother Sneha, a part-time accountant in East Bay Area. (Studies refute the vaccine theory.) Some say it is a harbinger of societal evolution; joint families disintegrating to nuclear families to eventually self-sufficient individual worlds where human “social” contact is made via machines (computers). Yet another theory is that some unpredictable connections remain incomplete within the child’s brain in the early developmental years, which could explain why the symptoms span a wide range, the official diagnosis being “Autism Spectrum Disorder.”
The neurobiological incompleteness does however manifest in some classical symptoms, and tests are based on there being consistent evidence of a few. For example, showing no cognizance of one’s own name and not seeking human contact are two symptoms mandatory for a diagnosis.
Autistic means “into one’s own self.” Autistic individuals are not just introverted; they seem to exist in a world of their own. They usually do not respond to hugs; typically do not coo back to baby-talk, and rarely show emotions. Some children indulge in repeated head banging or spinning—walking in circles—continuously. Some will wander off on their own. Most have issues with food—some eat indiscriminately, even dirt; others will eat only pureed food, even at four years. “Krish would stay silent for eight hours straight at his daycare. At first we thought he was just an extremely shy child, but he never imitated actions, repeated new words, or played with other kids. He would stare at nothing for an hour at times … I had been a mother for two years, and I had never heard him say Mamma,” recalls Priti, a mother in Cupertino. Krish was eventually diagnosed as being autistic, his expressive language skills leveled at seven months.
What can be done? Interestingly, in the case of autism, a lot can be done and has been done. Autism cannot be cured, but in a significant number of cases, if diagnosed in the first three years of life, a number of therapies can be put in place to eventually get the child to be a fully functioning, participative member of society.
The remarkable thing about autism and the age of science we live in is that the neurobiological incompleteness can be completed. An autistic child that does not realize that he needs to take his finger away from the scalding surface can be taught to do so. While he may still prefer being by himself, he can be made to feel some joy in being with others a part of the time. He can be taught to not wander away, to explain in advance that he does not like songs instead of screaming; can be taught that when it’s cold outside, he needs to wear a jacket.
Given the right therapies in the right amounts, a significant number of children with these special needs can mainstream—meaning leading independent, productive lives as a part of society. Early intervention support has been put in place by state governments, where an evaluation and ensuing therapy is free up to three years of age. The public school system takes financial responsibility of the child’s education thereafter, via IEPs (Individualized Educational Plans).
However, given the rise in autism and the downturn impacting government funding negatively, parents are facing increased resistance to their requests for better facilities in special classrooms and curriculum that keeps pace with the child’s progress.
To exacerbate the situation, the quality-of-life needs of a child are not taken into account by the school; just the educational needs. A child may be taught the alphabet, but not how to respond to “How are you doing today?” Generally speaking, a classroom or interaction with a stranger/ peer overloads the senses of an autistic child, resulting in “behavior issues”—examples being tuning off, spinning, screaming, or repeated head-banging. Parents of children with special needs have to pay out-of-pocket for empowering their child with strategies to cope. These therapies can be categorized as speech, occupational, behavioral and physiological.
At the forefront of not just sponsoring these therapies but also imparting them, are the special parents of these special kids. “It took us a year to get Suraj to say ‘banana.’ I would get him, through tears and tantrums, to try to say the word first, before actually giving it to him. It broke my heart everyday, he loves to eat them so much, but I had to stay firm,” says Shailaja, an ex-marketing professional. Shailaja’s mode of parenting is typical of autistic therapies, which coax the people around an autistic child into a pattern of intensive modeling and tough love.
Another example of parents unlearning their intuitive persona to don the special-parent avatar is in the occupational area. Swati Shah, founder of Ascend Rehab, an occupational therapy clinic based in San Ramon says, “Most of the kids who come to me have issues with what is called sensory integration—a hyper or hypo-sensitivity to textures, sounds and motion; and poor hand-eye and limb coordination.” Some children are easily and uncontrollably excitable, so parents learn to ask them to use “quiet hands and voice” and get them to wear weighted jackets—literally, jackets with weights in them—to calm them down, like when a heavy blanket is recommended for a baby to help her sleep better.
Applied Behavioral Analysis (ABA) therapy has been the bulwark therapy for most families. Children with autism display a spectrum of behavioral challenges, and ABA works on customizing the program for each child. One child may need help in making eye contact; another might need help in playing with peers. Kevin Dotts, founder of I Can Too, a leading provider of ABA therapy in California shares, “Every autistic child is unique, just like typically developing kids. Having the same diagnostic label does not make them homogenous.”
ABA therapists typically work in teams of 2-6 with a child on a daily basis and usually meet monthly with the parents to assess progress and re-strategize as needed, the credo being, “If a child cannot learn in the way we teach, we must teach in a way the child can learn.”
A typical program consists of repeated instruction, modeling and rewards for each child, along with a huge dose of love and patience. “I have seen several kids gradually gain confidence, learn to coordinate their behavior and bodies, and come into their own.” says Kavita Singal, an ABA therapist in San Jose.
Some parents prefer literally getting under the skin with autism. Tripti, mother of Shekhar—a five-year-old who was diagnosed with autism at two, found that following a wheat- and casein(milk protein)-free diet helped her son to be calmer. The reasoning gaining increasing acceptance among parents is that some autistic children cannot absorb certain foods well, leading to a kind of toxicity in their bodies which in turn affects the neurobiology— “you are what you eat.” Homeopathy and Ayurveda are also being adopted by parents to improve quality of life for their kids.
All of these additional therapies are typically imparted 15-25 hours a week, and it can take anywhere from two to 15 years for the modeled behavior to be fully ingrained as intuitive behavior.
An added challenge with autism is that even ingrained behaviors can be forgotten, so consistent, long-term therapy is a must. The financial burden on families ranges $2,000-$5,000 a month. One parent often has to give up his or her job in order to tend to the child, adding to the financial strain.
Considering that autism is a medical condition, one would think insurance companies would cover the costs. Not so in California which, unlike some other states, does not mandate coverage for autism therapies. Most insurance companies deny coverage, ironically, on account of the therapies not being “medically necessary;” meaning that no medicines are required, so they cannot be held responsible. Most families are forced to engage in a battle of paperwork and lawsuits to get coverage. A common tactic adopted by the insurance companies is to delay start of coverage for several months, and then capping the costs or forcing several re-evaluations frequently. Sadly, coping with a special child, therapies, and third parties involved is a full-time job, and that’s excluding the emotional drain.
This is a battle fought by parents haunted by the fear that their child will either abandon society or worse, be shunned by society. “Even with the therapies in place, I’m haunted by the possibility that the worst might not be behind us,” says Meera, afraid that Akash, her five-year-old, will never learn how to be with others. It is inevitable that autism will touch all our lives; if a child we know isn’t already affected, one in our neighborhood definitely is, given the figures.
As a society, we must learn to recognize and assist the Meeras of our world. If it takes a village to raise a child, it takes an accepting society to raise a child with autism.
(Names changed to protect privacy.)
Priya is actively involved in special education issues and autism therapies.
Early Warning Signs of Autism
• Does not coo or smile by six months old
• Has trouble sitting, standing up, or reaching for objects by age one
• Does not say simple words like “mama” or “dada” by age one
• Does not turn his or her head to follow sounds or voices
• Does not react to loud noises
• Repeats certain behaviors, including some that are harmful, like banging his or her head
• Makes little or no eye contact and wants to be alone
• Does not play games like peek-a-boo or “pretend”
• Any loss of speech or social skills
Source: First 5 of California
Autism Etiquette: What to do if you meet a family with an autistic child
• Never ignore or pretend the child doesn’t exist. This makes the child and family very uncomfortable. Acknowledge the elephant in the room.
• If you can start with a look straight in the eye and a smile on your face, you would have already built a big bridge to reach out to a child who could really use a friend. This communicates: I care and you are OK just the way you are.
• If you see a child having a difficult time, don’t assume the parent is negligent and throw disapproving looks. My child is acutely sensitive to the piercing glances of strangers even when he is in the middle of a meltdown. Ask if you can help. If you are told to stay away or your advances for help are refused, just smile at the child/mom/dad/care giver encouragingly and leave.
• Inappropriate behavior may manifest itself in different ways—a child maybe playing oddly, maybe grab food that you’re eating, he may be repeating meaningless phrases over and over again. Use common sense, be accepting, smile, be non-judgmental. The less self-conscious the child feels, the more likely the situation is to resolve itself.
• Don’t talk down to a special needs child under the assumption that just because he is behaving like a two-year-old, he thinks like one too. Autism is primarily a communication disorder and you will be surprised how bright, creative and thoughtful these children are. Communicate at an age appropriate level even if you don’t receive feedback to validate it.
• Just accept them for who they are and love them no matter how they behave. You may be surprised to know that the seemingly low functioning child who may appear non-verbal or non-responsive will understand that and relax around you.
What about your kids/teenagers who may encounter this strange behavior? Your children take their cues from you. If you take things in stride, don’t overreact, treat people with respect in spite of their differences, then so will they.–Nandini Minocha
Developmental Disabilities in the Media
The media plays a vital role in social awareness and acceptance of disabilities. In recent years, autism and other disabilities have emerged from the shadows and become part of the mainstream media dialogue. Soap operas and news features have done their part in including special children in our everyday lives. Some Bollywood examples are the recent Shahrukh Khan movie, My Name is Khan, and the older Taare Zameen Par, Paa, Sadma, and Eeshwar.
Hollywood examples include the recent Dear John, and the old Mercury Rising and Rain Man. In 2008, the trials and triumphs of a real-life autistic child were depicted on the NBC soap opera Days of Our Lives. USA Network’s popular soap Monk had an obsessive-compulsive detective solving crimes, and the medical drama House had an episode based on the illness of an autistic child. The forensic anthropologist Temperance Brennan in FOX channel’s Bones is widely regarded as having Asperger’s Syndrome. The popular sitcom The Big Bang Theory also has a central character with Asperger’s.
More recently, NBC’s new hour-long drama Parenthood features Max, a child with Asperger’s Syndrome. The animated show Arthur on PBS introduced a new character in April, also having autism.
Zee TV has been airing Aap Ki Antara, about a special child who is unable to bond with her family and does not have any friends. The pilot episode dealt with how she is bullied by her classmates. The series follows her through her developmental years, each episode delving into the immediate and adjusted reaction others have to her; and how she deals with every situation life throws her way.
The production team for the series did extensive research on autism, spoke with hundreds of special parents in India, and networked with professionals in the field; the information has been built into a website—http://www.beingantara.com
Amidst all the drama of daily intervention, special education, and insurance battles, the parents of autistic children grow increasingly isolated. One organization in the SF Bay Area lights the path for Indian families with special needs children—Jeena, “Hope for Kids,” http:// www.jeena.org
Jeena is a non-profit organization to support special families with origins in the Indian sub-continent. Member-families have children with a diagnosis of Autism Spectrum Disorder, Cerebral Palsy, ADD/ADHD, and Aspergers Syndrome, among others.
“It can be overwhelming for parents to distinguish between their own needs, the needs of their child, and their family. It gets further complicated as it is difficult to understand the complexity of the system(s) serving children with developmental disabilities,” says Rajni Madan, founder of Jeena. “Jeena’s intent is to focus on the family and empower parents to provide informational and emotional support to one another. The goal is to organize activities that will be beneficial to the special child. We celebrate life and recognize the potential of a child irrespective of the disabilities.”
The celebration of life is evident at the annual show “Jeena Yahan,” where most of the stars on stage are the children. Fun events include quarterly birthday parties, periodic “Mothers’s Night Out” dinners, picnics, and camping trips. Jeena routinely hosts discounted-fee lectures by specialists in the field of special education law, and emergent and established therapies. In addition, Jeena part-sponsors therapists in several fields to hold weekly sessions for special children. Recently, for example, a speech and language therapist conducted speech therapy every other Sunday for 12 weeks for all member children.
“Every family at Jeena understands my life. It is no longer possible for us to sustain friendships with parents who don’t have special needs; but for Jeena, we would’ve had a very lonely life,” says Tara, whose son was diagnosed with autism at three.