Tag Archives: epidemic

An Unseen Epidemic: Indian Americans & the Opioid Crisis

On 5th July 2020, Ikonkar Manmohan Singh Sandhu, a young 23-year-old boy, died from an opioid overdose in Michigan just months before he was to be married. He is by no means an isolated case in the Indian American community.

A small group of doctors are sounding the alarm on the nation’s opioid crisis. Dr. Arun Gupta is one of those who is urging health authorities to wake up to this catastrophe, which is ripping through communities with scant regard for race, gender, educational level, or financial standing.

To be fair, before COVID-19 ravaged the country, the growing opioid addiction was giving the nation’s health officials sleepless nights. The pandemic put this issue on the back burner and while more Americans are dying from the virus, it can be just as deadly if left unchecked.

Opioid overdoses have killed more than 70,000 young people annually between the ages of 18-54 for the past five years. In 2011, the CDC reported that overdose deaths superseded auto accident deaths for the first time in 32 states This is now true for all 50 states. The organization also reported that more than 700,000 young Americans have died between 1999- 2017 from polydrug overdose. That number is expected to be as high as one million by the end of 2020. The report further states that “preventable disease & retroactive analysis show that most of these deaths were unintentional.”  Isolation, stress, and the depression, that came in the wake of the pandemic are shooting cases through the roof.

Dr. Arun Gupta

“Parents are burying their children and children are burying their parents,” says Dr. Gupta. 

Dr. Gupta is quick to rid you of the rosy view that Indo American families have been unaffected by this affliction. It is a growing trend in the community, he says, largely due to parents’ unrealistic expectations for their children and the reality of facing conflicting cultures. What worsens it, is that many are either in denial or wary of seeking professional help for fear of being stigmatized or shunned. These are lives that could have easily been saved, he laments, much like the case of a distant relative who died because the family hesitated to reach out for help or were unaware of the problem.

A physician for 34 years, of which 14 are as a doctor of addiction management, Dr. Gupta has seen enough to be worried. He has been charting the surge in cases throughout the nation for the past decade and is seeing it played out at his doorstep – the rural region of Monroe, Michigan where he runs his private practice.

For 11 years, Dr. Gupta was the local prison doctor where he saw the interplay of drugs and death up close and the ineffectiveness of the administration’s efforts to curb it. This pushed him to change tracks from being a general physician to addiction management. Rural communities, he observes, are more prone to opioid addiction than urban areas where the population is better educated and have higher-paying jobs. The problem is compounded when there is family instability, lack of education, poverty,  physical, mental and sexual abuse in childhood, mental illness, or addiction both in the family and the patient. 

So why are addictive opioids prescribed in the first place and how do they hook us? About 25 years ago, pharma company Purdue, manufacturers of the painkiller Oxycodone, pushed the government to sanction prescribing painkillers for non-cancer-related pain. The American Pain Society also classified pain as the fifth vital sign after blood pressure, pulse, temperature, and weight. Statistically, 40% of the country’s population is in chronic pain and many require pain medication to carry out their daily activities or even go into work.

Addiction starts innocuously enough with a prescription for a painkiller to treat post-surgery or chronic pain as in instances of back pain. Consuming these painkillers diminishes the pain but also brings on a euphoric feeling as it raises dopamine – the brain’s pleasure hormone. Celebrities like Michael Jackson were known to use them before a performance, a term referred to as, “spotlight euphoria.” Additionally, it changes the perception of reality for those dealing with psychological issues such as an inferiority complex or anxiety,  these people now start “liking themselves and feeling good.” This altered reality quickly spirals into an emotional and social need followed by dependence and cravings for the painkiller.

The signs of addiction are evident in drastic mood changes, lethargy, or impaired decision-making, among others. Discontinuing the painkillers could lead to a host of withdrawal symptoms such as chills, tremors, body aches, bone pain, vomiting, diarrhea, or irregular respiration. However, Dr. Gupta clarifies that not everyone gets addicted to painkillers and the risk of addiction is only about 10%.

Soon, Oxycodone grew so popular that it began to have, “street value.” When prescriptions ran out, users turned to the streets where it could be obtained illegally. Hustlers began faking health issues to procure and sell these painkillers giving rise to the term “pill-mill.” The cost of one milligram of Oxycontin is one dollar so someone using 1000mg was spending $1000 a day. While insurance took care of legitimate prescriptions, those who were addicted were shelling out their own money. This, of course, was done in connivance with “some doctors who played the game.” Dr. Gupta estimates that about 1000 doctors have been apprehended so far for violating this practice and have “tarnished the image of doctors.”

There is an obvious connection between mental disorders and addictive disorders and its consequences can sometimes be life-threatening. Doctors, however, are required by law to treat pain with painkillers even if there is a sense/awareness that this medication could become addictive to the patient. On the other hand, if doctors practice caution in prescribing pain medication, they risk a bad review on their practice, something every doctor understandably wants to avoid. 

In 1999, the Center for Disease Control went on record for the first time and shared its report of 4000 young Americans who died from drugs. The government scrutinized the problem and rolled out the Drug Addiction Treatment Act of 2000. For the first time, this law allowed practicing doctors to learn and treat addiction with an FDA approved drug. The law also stipulated that any practicing doctor could complete an addiction program and receive an X DEA license which would allow them to treat 30 patients per month for a year. If the doctor’s records are found in order, they could treat 100 patients per month. Past President Barack Obama signed a law that would allow some doctors with specific credentials to treat 275 patients a month. This number was controlled to prevent its misuse but sometimes the best-intentioned laws have unintended consequences.

This one did. 

Only 4300 doctors in the US can treat 275 patients a month and Dr. Gupta is one of them. It’s a drop in the ocean for the estimated 20-40 million people who need help overcoming their addiction. There are more than 100,000 healthcare providers in the country that include doctors, nurses, and physician assistants who have the necessary X- DEA credentials to treat opioid use disorders. But less than 20,000 are actively involved in dealing with the growing opioid epidemic in the country. This lack of access to a healthcare provider aggravates the problem leading to more deaths than recoveries. Meanwhile, the pandemic has not made things easier. There is excessive stress and limited counseling due to the shutdowns and prescriptions cannot be given on the phone without the necessary drug testing. This explains the rise in overdose deaths and addiction cases in the past nine months.

Apart from flawed policy, the American Society of Addiction states that every doctor who graduates from medical school is required to study addiction management. There are 179 medical schools and approximately 9000 residency programs in the country and not one of them teaches this course.  Moreover, addiction management is not considered on par with other areas of medical specialization and neither do insurance companies view addiction like other chronic diseases such as blood pressure or diabetes.

In 2002, the drug Buprenorphine was approved for addiction treatment and ten years later another drug Zubsolv made it to treatment plans. These drugs block the opioid receptors in the brain and reduce a person’s craving for the painkiller. Another ingredient in the drug, naloxone, reverses the effects of opioids. Together, they prevent withdrawal symptoms and deter the abuser from snorting or injecting it. Dr. Gupta pairs medication with counseling, and non-addictive medication in cases of insomnia or anxiety. Recovery takes anywhere from six weeks to six months depending on the severity of the addiction, but the struggle to remain clean continues for the rest of their lives.

With death rates from opioid misuse surging, more than 500 laws were enacted in the last 10 years against doctors, pill mills, and pharmaceutical companies to curb the problem but this has only exacerbated the issue. Addicts are now forced to go to the streets instead of visiting a doctor for treatment. Dr. Gupta notes that national autopsy results over the last 5 years consistently show that fentanyl, heroin, and cocaine are the first three drugs in more than 55% of the people with drug overdose deaths as opposed to prescription medication.

Over the past few years, Dr. Gupta has presented more than 150 talks to schools, doctors, healthcare systems, and social organizations like Rotary clubs and the Kiwanis Club to highlight the gravity of the problem and his message that addiction can be cured. He is talking to elected officials to leverage their influence and galvanize the government to rethink the limit of patients and allow greater access to people who want to overcome their addiction. 

Addiction, he warns, has become synonymous with a death sentence in this country.


Manu Shah is a freelance writer covering Indo American news.

Survive COVID-19 with a Cabin Fever Playbook

What seemed improbable a month ago is today a shared global reality. The steady unravelling of COVID-19 has forced us all – across generations and geographies, to stay home. Morale is low and stress levels are high as we work from home, grieve for and worry about those afflicted, homeschool our children, and struggle to make ends meet in a crumbling economy.

While challenges of confinement and the lack of routine have pushed me out of my comfort zone, strangely, this period has also been a deeply introspective one. I have had teaching moments that have helped me prioritize and gain perspective to effectively navigate these difficult and fluid times.

LEARNING TO ROLL WITH AMBIGUITY
The steepest learning curve for me has been accepting unpredictability and rolling with it. I find myself:

  • Improvising. For example, when I couldn’t find any sanitizers anywhere, I was forced to make my own. My favorite recipe is mixing ¼ tsp of bleach with 4 cups of water.
    When getting my daily yoga stretches seemed impossible, I resorted to CosmicKids Yoga. Now, I get a yoga workout with my preschooler in tow since it engages kids through story and movement.
  • Getting creative. I buy whatever fresh produce is readily and easily available and turn to the internet for inspiration. I’ve dug out my formally forgotten cookbooks and am trying my hand at new recipes.
  • Relaxing standards. With everyone homebound, there’s more mess, less tidiness and meals are often prepared on the fly. But that’s to be expected. Once this realization struck, I recalibrated and lowered standards. This helped me stay calm and centered. Beds don’t always get made, but the sheets are clean. Meals may be prepared on the fly, but they’re healthy. I learned not to sweat it. There’s enough to worry about as is.


STAYING ORGANIZED

I am by no means a planner. But, when I saw the panic around me at our local grocery store, I was jolted into action:

  • To create a weekly meal roster to plan grocery runs.
  • I stocked up on non-perishables. Fortunately, being accustomed to eating and cooking Indian food, between atta (whole wheat), rice, Sabudana (tapioca), pasta, flour, sooji (semolina), besan (chickpea flour), poha (flattened rice), bread, and a few packs of frozen rotis and naans, I had an array of grain options. My new favorite comfort food now is a simple and wholesome Sabudana khichri.
  • To bolster our supply of vitamins, ginger tea, and citrus fruits to keep up our immunity.


COMMUNICATING

At a time when schedules are unpredictable with no school and everyone working from home, things don’t always fall in place as seamlessly as they used to. As a result, I found it vital to effectively communicate household rules and expectations.

  • We have a written daily routine and each person is assigned household chores and responsibilities. That way everyone’s on the same page and knows when and how to chip in. This has provided the much-needed predictability in times of uncertainty and has also fostered teamwork.
  • I am also making the most of this opportunity to double down on conversing in my native language (Hindi) with my preschooler and second grader. I can already see some promising results.

MAKING TIME FOR LITTLE THINGS
I find myself making more time for family. A relatively slower pace of life is allowing more time to connect with each other as well as with extended family and community members. More than before, I see us using FT, Skype and Zoom to connect with each other. Most importantly, I’m enjoying simple activities like:

  • Walking. It is Spring after all! If parks are out of bounds, we take family walks. These aren’t long. Sometimes squeezing in a short walk between meetings or a break is good enough. It’s refreshing to marvel at blooming flowers and seek joy in the many signs of new life and activity around us.
  • Playing. We make up silly games, play board games, word games, card games, Simon says, red light-green light, do messy art projects; all of which fuel our creativity and bring us closer as a family.
  • Baking. Instead of composting that overripe banana, we make banana bread. We roll dough and cut out shapes when we make atta ladoos and atta cookies respectively.


LAUGHING

For some time, I had replaced humor with fear, anxiety and stress. One day, my eight-year-old asked me, “Why do graveyards have a fence around them?” Looking at my confused expression, he promptly replied, “Because people are dying to get in!” With all the dread unfolding, it felt like a scene from a dark comedy movie. It lightened the mood and we all had a good laugh.

I realized that it’s ok to laugh even in the face of adversity. Given our current reality, it’s easy to forget to let some humor into our lives. Besides, doesn’t laughter reduce stress-generated cortisol that kills our immune system? So, why not laugh, boost our immunity and flatten the curve!

To get in some laughs every day:

  • I have intentionally added joke books to our children’s daily reading stack. Kids love jokes and rarely miss an opportunity to share something that tickles them.
  • In the evening, my husband and I carve out some time to watch something funny. It’s a wonderful way to relax, connect and laugh together as adults.

The COVID-19 pandemic continues to be a trying time, stretching our mental and physical capacity to endure fear and uncertainty. Yet, it’s heartening to see folks reach out to provide services like grocery runs or offer free in-home entertainment materials like family games, books and DVDs. We’re connecting with family, friends and our extended community, to make sure we’re all okay. Our children are virtually interacting with cousins, grandparents and friends. I’m reminded of Gilda Radner, who once wisely said – “Life is about…taking the moment and making the best of it, without knowing what’s going to happen next.”

We’re certainly trying our best!

Nidhi Kirpal Jayadevan’s pre-kids’ life was dedicated to the complex field of Communication Sciences. After choosing to be a fulltime mother, reading and playing with her high energy boys has been a fascinating journey. It has (re)kindled in her a sense of wonder in all things small. She constantly sees the world through little eyes, applying simple learnings to deepen life’s meaning for herself and her family.

Edited by Meera Kymal, contributing editor at India Currents

Photo by Jyotirmoy Gupta on Unsplash

The Autism Epidemic

“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


Jeena—Supporting Parents

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.