Twenty-seven-year-old Anujit Singh was diagnosed with Autism when he was three years old and the diagnosis wasn't easy. "Not all disabilities are visible. At first, I really had to investigate to understand if my son was processing anything that was communicated to him," said Ruby Singh, Anujit's mother and founder of Assisted Living for Autistic Adults (ALFAA), a not-for-profit organisation for children and adults with autism and founder member of Autism Society of India.

Singh said that although Anujit was active, he wasn't communicating at all even after being two and a half years old. She consulted a neurologist in Kolkata after Anujit's kindergarten teachers repeatedly complained of him not cooperating. "Initially they diagnosed him with Tourette's syndrome. The confirmed diagnosis came only after we consulted with NIMHANS Bangalore," she said.

Photo: Anujit Singh

Globally, one in every 100 children have autism, according to the World Health Organization. Autism Spectrum Disorder (ASD) affects around 3 million people in the Indian subcontinent, and is being increasingly recognised as an important issue, according to a March 2018 study.

"Once considered rare, the current understanding is that autism is in fact one of the more common developmental disabilities. The increase in prevalence can be attributed mainly to increased awareness amongst professionals," read the study.

What is Autism?

Autism Spectrum Disorder (ASD), is a diverse group of neurodevelopmental disorders. Every person with autism is affected by the disorder differently. While the disability affects communication and social interactions, those mildly affected can hold regular jobs. Since it is a spectrum, those with severe conditions need lifelong care and support.

Other characteristics are atypical patterns of activities and behaviours, such as difficulty with transition from one activity to another, a focus on details and unusual reactions to sensations, according to the World Health Organization.

According to the United Kingdom's national autism research charity Autistica, having autism is like having a mind that works for you and against you at the same time. "There is a problem with the sensory processing and the transfer of information to the sensory organs," said Singh.

"A lot of children with autism dislike climbing staircases because they are not able to judge the depth of the stairs. Some don't like to walk on carpets because it highly stimulates their sensory organs. It pricks them or for some it feels like an electric shock," she explained.

Additionally, synaesthesia (a neurological condition that causes merging of the senses) can also be common in children with autism. For instance, a person with synaesthesia can see sounds, smell or hear colours, feel sounds on the skin and taste shapes. So, when someone looks (or stares) at them directly, they feel it on the skin, according to UK's National Autistic Society.

Autism: Symptoms & Diagnosis

The common signs of autism are delayed or absent speech, frequent repetition of words and phrases, difficulty listening, concentrating and processing, difficulty expressing feelings, hyperactivity, over or under sensitivity to sound, touch, taste, smell or light, difficulty in socialising.

"Mainly they are not able to express themselves. So they tend to be socially awkward. Since they are easily overwhelmed and hence certain exposures could trigger heightened responses," Dr Kaustubh Mahajan, Consultant Neurologist at SL Raheja Hospital in Mumbai, told FactChecker.

"The diagnosis should be early. One cannot develop autism at a later stage in life. It is always there but may be diagnosed later," he added.

Policies to Assist the Autistic

In India, 1.16 lakh beneficiaries avail assistance through various schemes provided by the Union government, said Minister of State for Social Justice & Empowerment Pratima Bhoumik in Lok Sabha on March 22, 2022. Of these, Kerala (73,000) accounts for the highest number of beneficiaries, followed by Gujarat (10,490) and Andhra Pradesh (7,144).

A disability certificate is mandatory to avail any scheme related to disabilities in the country. Although disability certificates are not exclusively available for those with autism, one can apply for the 'Unique ID for Persons with Disabilities' initiated by the Department of Empowerment of Persons with Disabilities from the National Portal of India website.

In 2002, the Union government constituted the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities to empower and facilitate registered organisations dealing with the challenges of people with disabilities.

Niramaya is the only health insurance scheme providing insurance to persons with Autism, Cerebral Palsy and other disabilities. Schemes like Disha and Gyan Prabha provide support for pursuing educational and vocational courses. Vikaas is a day care scheme for persons above 10 years with autism and other disabilities. Further, schemes such as Samarth and Gharaunda focus on providing short- and long-term residential and care services.

World Autism Awareness Day is observed on April 2 every year. The theme for this year is 'Inclusive Quality Education for All'. Here are five misconceptions surrounding ASD that experts help bust.

Myth #1: Autistic children unnecessarily throw tantrums, are predisposed to violence

Fact: Although there are research studies showing a link between autism and aggression, it's worth noting that these studies emphasise on why aggressive acts are committed by those with autism. Doctors explained that it was highly unusual for those with autism to act violently or hurt anyone. In some cases, sensory overload and emotional distress caused by social rejection, victimisation, physical or sexual abuse, any psychiatric comorbidity (e.g. psychosis) and other psychosocial adversities could trigger aggressive acts.

According to a 2018 study published in Elsevier, the researchers found, "ASD itself is not an inherently violent disorder and that individuals with ASD alone are no more prone to violence than the people from the general population."

Myth #2: Autism is caused by vaccines

Fact: There is no link between receiving vaccines and developing autism, according to the Centre for Disease Control and Prevention (CDC). Neither is there a link between vaccine ingredients and ASD. The National Academy of Medicine, formerly known as Institute of Medicine, reviewed the safety of eight vaccines to children and adults. The review found that with rare exceptions, these vaccines are very safe, according to CDC.

Once vaccine ingredient that caused concern was thimerosal. Thimerosal is a mercury-based preservative used to prevent bacteria and fungi from contaminating multidose vials of vaccines. "Since 2003, there have been nine CDC-funded or conducted studies that have found no link between thimerosal-containing vaccines and ASD," according to CDC. Further, these studies also found no connection between measles, mumps, and rubella (MMR) vaccine and ASD in children.

Myth #3: Autism is caused due to poor parenting

Fact: Three decades ago, when autism was known as a rare condition, parents, especially mothers were blamed for being emotionally distant. They were often labelled as "refrigerator mothers".

There is immense emotional pressure on parents with autistic children, said Singh. "My son used to be very restless at crowded places such as malls and railway stations. Instead of helping, people used to advise me on how to handle him. The last thing I need from people is their advice on how to control my child," said Singh. "As a parent I receive a lot of sympathy but no empathy."

Doctors say there's no one cause of autism but can be caused by genetic and environmental factors. "Mostly it is inherited but age can also play a role in autism. As the age of the mother increases, the chances of developing autism also increase," explained Dr Mahajan. "Exposure to multiple toxins or medications can influence the child into being autistic."

Myth #4: Autism is a mental health disorder

Fact: Autism is a developmental or neurological disability. Autistic persons have needs ranging from full-time care to slightly more time in processing information. For instance, this ranges from difficulty understanding others' feelings or expressing their own to finding loud noises, bright lights, crowded places and unusual situations stressful or upsetting.

Overall, people with autism can have good mental health. However, according to Autistica, seven out of 10 autistic people have a co-occurring mental health condition such as anxiety, depression, ADHD, anorexia or obsessive-compulsive disorder (OCD). But this is likely due to external factors such as challenges in fitting in or making sense of the world, discrimination, stigma and lack of necessary support.

Myth #5: Autism can be cured

Fact: Autism is a lifelong developmental disorder of the nervous system, not a disease that can be treated. Autism is a complex condition and varies from person to person. One of the main aims is to manage the symptoms from early childhood.

According to the WHO, timely access to early evidence-based psychosocial interventions can improve the ability of those with autism to communicate effectively and interact socially. "It is not a disease that can be cured. We have to come up with therapeutic ways to help them learn better through the ways they perceive things," said Dr Mahajan. Therapies such as anger management, applied behavioural analysis, sensory processing therapies and animal assisted therapies also help. Medicines are given for severe cases, the neurologist explained.