This is the first of a two-part series on a deliberate misinformation campaigning denying autistic children a chance to lead a near-normal life.
Paediatricians and therapists recommend early intervention therapies for autistic children. (Creative Commons)
Four-year-old Aditya did not hesitate to drink the milk his mother Meera gave him with a forced but reassuring smile. He gulped down the milk that tasted a bit different: Sugary, slightly salty, and creamy.
Meera of Gachibowli in Hyderabad was relieved to see her child drink the raw milk without throwing tantrums. She was prepared to procure any amount of camel milk to see her son grow up as a normal child.
The young mother’s world had come crashing down when Aditya was diagnosed with Autism Spectrum Disorder. A profound sense of helplessness overcame her as she felt left alone with her hapless child, who remained oblivious to the myriad emotions his mother was going through.
It was a defining moment in Meera’s life, a turning point. Determined to find a cure for Aditya’s “disease”, she took him to several doctors before turning to practitioners of alternative medicines, who convinced her that routine vaccinations and conventional medicines were responsible for her son’s condition.
The woman followed their advice blindly, and the camel’s raw milk was one of their prescriptions to cure Aditya.
A few years passed by. Aditya missed several crucial vaccinations as his mother tenaciously held on to the advice on means to protect him from further “harm”. Besides the raw camel milk he was forced to gulp down, the child also downed herbal concoctions and homoeo medicines, besides undergoing a dietary change.
He was also subjected to hyperbaric oxygen therapy under the watchful eyes of his ever-protective mother, who was hoping to see a miracle.
The miracle did not happen as Meera had expected. She, however, had a change of mind when Aditya took ill due to a severe bacterial infection. The worried and confused mother took him to a paediatrician, who prescribed him antibiotics.
The visit to the paediatrician upended her trust in alternative medicine. With much difficulty, the doctor convinced her of the dangers involved in continuing unproven and even unapproved treatment methods.
Meera is a representative of several parents living in various Indian cities who have denied crucial vaccines to their autistic children. They are the misled parents of India, who were made to believe that vaccines had caused autism.
These parents have left doctors worried over the growth and development of such children. Hyderabad-based paediatrician Dr Sivaranjani Santosh is one among them.
“Autism is a taboo for many parents. They don’t understand that it is not a disease. Nearly 40 percent of parents refuse to get their autistic children vaccinated and nearly 60 percent of them have vaccine hesitancy. This is not good for the child’s development,” Dr Santosh, who along with a few colleagues, has taken up the task of educating parents, told South First.
Autism Spectrum Disorder (ASD) encompasses a variety of conditions characterised by challenges in communication and social interaction, repetitive behaviour and delays in development.
“Autism can be detected only through behavioural tests. There is no medical diagnosis available since the disorder is not based on any particular biological marker. However, early interventions are important for these children, which otherwise could worsen their condition,” Dr Ramesh Konanki, Paediatric Neurologist at Rainbow Children’s Hospital in Hyderabad, said.
Signs of the condition are normally evident between the ages of two and three. It is caused by a combination of genetic and environmental factors.
Dr Santosh said many parents are made to believe that autism is a disease. “It is not a disease,” the paediatrician said.
Explaining further, Dr Tangella Ravikanth, Consultant Child and Adolescent Psychiatrist at Little Wings Child Development Centre in Hyderabad, said ASD is a developmental condition characterised by differences in social interaction, communication, interests and behaviour.
“It is called a ‘spectrum’ because it includes a wide range of symptoms and severity levels. This means that each individual with autism has their unique strengths and challenges,” he added.
Doctors explained that autism is part of the neurodiversity paradigm, which recognises and respects neurological differences as natural variations in the human genome. Similar to appreciating diversity in culture, personality and other human traits, neurodiversity advocates for a similar appreciation and acceptance of neurological differences.
“It is a developmental condition, which means it involves certain patterns of growth and development that differ from typical expectations,” Dr Santosh said.
There is no ‘cure’ for this condition, doctors explained. “As autism is not a disease, the concept of a ‘cure’ is not applicable. Instead, interventions and support systems focus on helping individuals with autism lead fulfilling lives and achieve their potential,” Girija R Shashank, Consultant Special Educator from Chennai, said.
Nearly 40 percent of parents of autistic children refuse to get their wards vaccinated, especially the Measles, Mumps, and Rubella (MMR) vaccine.
“It is usually communicated through word of mouth. One parent with an autistic child would have told the other that the cause of the child’s condition was due to vaccine or the condition worsened post vaccinations,” Dr Santosh said.
“Additionally, the mushrooming alternative therapy centres that offer ‘cure’ for autism make the parents believe that modern medicine and vaccines are the cause and must be stopped completely if their child should be ‘cured’ of this ‘disease’,” she further said.
Concurring, Dr Konanki said many children, who have missed their vaccinations, are being brought to doctors.
He alleged that a homoeopathy centre in Hyderabad has been linking autism with vaccines and antibiotics and asking parents to stop vaccinating their autistic children.
“This is worrying. They openly hold vaccines, especially MMR, responsible for autism,” he added.
South First can confirm that some parents become vulnerable and credulous upon learning that their children are autistic. They blindly believed the misinformation that vaccines have caused autism. A desire for clear answers makes them vulnerable to therapists’ claim that the ‘disease’ could be cured.
Some even claimed that they had completely cured a few children of the malady. Such claims made on social media and media networks often gain much traction.
This correspondent came across one such parent in Bengaluru. “There is enough proof to show that evidence-based medicine is influenced by the pharmaceutical industry,” she said, requesting anonymity.
She claimed to have researched vaccines, their ingredients, and their effects. “The effects are not the same in every individual, nor are they immediate,” she said with an air of authority.
A study, which was later debunked, too, had linked autism with the MMR vaccine. The 1998 study by discredited academic Andrew Wakefield sowed seeds of doubt in parents’ minds, making them suspect the vaccines.
“The study published in a reputed journal was retracted and there have been many studies debunking this theory,” Dr Ravikanth said.
Meanwhile, Dr Konanki found a coincidence in holding vaccines responsible for autism. Parents usually notice the first signs of autism in children around the age of 15-18 months. “It is the same time MMR vaccines are administered. So, the parents tend to connect the two,” he said.
“It is dangerous to miss the child’s routine immunisation schedules. I discuss the child’s condition with the parent, as I cannot forcibly administer the vaccine. I inform them of the dangers involved in not getting the child vaccinated and also counsel the parents about autism and the importance of their role in the child’s future. I have to leave it to the parents to decide on vaccinations and early intervention therapies,” Dr Santosh added.
Besides skipping the immunisation schedule, several parents also deny children a golden chance to overcome autism. They do not provide early intervention therapy to their child which are targeted treatments. It also provides support to families.
Dr Ravikanth said several parents trust alternative therapies. “Early intervention therapy for autism refers to a range of targeted treatments and support services provided to very young children with autism or those showing early signs of developmental delays,” he explained.
The aim is to improve outcomes by taking advantage of the plasticity of the young brain. Starting these interventions early — ideally before the age of three — can significantly enhance a child’s development, helping them to acquire essential social, communicative, and cognitive skills, he added.
“It works best when done at as early as 1.5 years of age when we begin to see some red flags in the child’s development,” Dr Konanki opined.
A red flag means there are some symptoms of autism. However, a scoring screening test is done in which parents are required to answer an online questionnaire.
Parents can undertake M-CHAT (Modified Checklist for Autism in Toddlers), a widely used tool for screening children between 16 and 30 months of age, without assistance.
If the child’s score in M-CHAT is above two, it needs to be thoroughly evaluated. If the score is above eight, the child should be professionally evaluated without fail.
Dr Konanki explained that being classified as “high risk” does not mean “high severity”. “It indicates a positive result for autism in the initial, definitive screening. A thorough evaluation is necessary, and during this process, many individuals may also require therapeutic interventions,” he added.
Paediatricians and therapists strongly recommended early intervention therapies.
“The chances of recovery are very high, despite autism being a lifelong neurological issue. Early intervention still has the potential to normalise the child’s condition,” Dr Ravikanth stressed the need for early intervention.
Doctors said many children have increased screen time and significant social deprivation in the post-Covid years. Those born around three years ago, referred to as “Covid babies,” have shown remarkable improvement and near-normal development through early intervention.
In such cases, a delay is observed after 3-4 years without intervention, and it is likely the child will face some level of disability, potentially more severe than if they had received appropriate timely therapies during the critical age for brain development.
“For instance, the critical age for speech development is generally considered to be between 5 and 5.5 years of age, although some extend it to 6 years. If a child does not develop clear, comprehensible speech by 5.5 years, it becomes challenging for them to achieve proper speech capabilities,” Dr Ravikanth said.
After this age, the brain becomes less receptive to new linguistic inputs. Despite potential denial or hope for natural progression from parents and even doctors, delaying intervention and simply sending children to school without therapeutic support results in major setbacks.
Doctors insist that even if attending a therapy centre is not feasible due to financial constraints or other reasons, early intervention can still be conducted at home.
“There are various manuals and free resources available that provide assistance,” Dr Ravikanth said.
He also warned paediatricians against waiting for ‘confirmation’ to begin the therapy.
“It is absurd on the part of paediatricians to wait for a year or more. The situation is pathetic in districts and peripheries. I have seen many paediatricians saying that ‘it may not be autism. Let’s see, for another six months or one year’. So the child turns three and four, and valuable time is lost,” he added.
(Edited by Majnu Babu)
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