(Complete story at http://www.indiacurrents.com)
“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.)