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It took 25-year-old Rushali (name changed) visits to six psychiatrists before she was finally diagnosed with Autism Spectrum Disorder (ASD) Level 1. “I always knew there was something different. People around me have noticed it since I was three, and pointed it out. Everyday life was hard, being neurodivergent. I missed social cues and I would experience sensory overloads. But mental health professionals would only see that I was verbal, had proper eye contact and maintained cordial relationships with people — and this was enough for them to dismiss me. I do well with academics and work, and so they would tell me that I just overthinking it,” she says.
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It was only last year that a psychiatrist listened to her concerns, held multiple sessions with her, and gave her a diagnosis.
Rushali is one of many who have tried to get a diagnosis for the symptoms that worried them, but have been turned away. Many have been dismissed by parents and families, as well as doctors.
Barriers to diagnosis
Patients with Autism Spectrum Disorder Level 1 typically exhibit difficulties in social communication, interaction and emotional regulation. They also have repetitive bodily behaviours such as finger flapping, and seek, and are comfortable with, firm routines. They can function independently, but require some support to work in mainstream workplaces.
Gita Sankaran, head, We Can, a resource centre for autism spectrum disorder says that an increasing number of adults aged 20-30 are coming forward with symptoms and seeking a diagnosis of ASD.
Lack of awareness, a lack of resource materials and assessment techniques however are hampering them: most psychiatrists do not pay attention to Autism Spectrum Disorder Level 1, experts say.
ASD is currently diagnosed with the Diagnostic and Statistical Manual of Mental Disorders-5, a standard classification of psychaitric disorders published by the American Psychiatric Association. “In India, most psychiatrists look at severe ASD Level 1, which would involve lack of eye contact, as well as ASD Level 2 and ASD Level 3. Patients on the milder end of the spectrum are missed,” says Tinu Thamby, a Chennai-based clinical psychologist.
Dr. Sankaran points out that the adults seeking a diagnosis must be given their fair consultation, something that is lacking now. “There is a barrage of information available online now, from Artificial Intelligence (AI) to social media. People then begin to find out symptoms that they relate to, and seek a diagnosis. In ASD Level 1, a lot of sessions would be required as adults would have learnt to mask their behaviours in trying to adjust to the neurotypical way of life. The answers on the assessments may often not reflect their true personality; psychiatrists would have to work with them, their family and others to get to a correct diagnosis,” she says.
Masking to fit in
People with ASD Level 1 often learn to mask their behavior when they realise or are told that it is not socially accepted behaviour: whether it’s being blunt, staying late during work or sensory overstimulation such as not being able to tolerate air conditioning.
Bavya, 26, from Pudukkotai, did not even know she has ASD Level 1 until it was pointed out to her by her therapist last year, after having been in therapy for four years. “A lot of my behaviour made sense after I got my diagnosis. I did not know my behaviour was not neurotypical. I thought I was lazy and was slacking at work. There is not much awareness about ASD Level 1 even in Chennai. Neither people nor psychiatrists know much about it,” she adds.
Dr. Tinu points out that most ASD Level 1 patients do not come specifically seeking a diagnosis, but come for other problems they face at work or at home, and in the process of consultation, realise that these problems stem from being on the spectrum. “There are no proper tests to be administered to arrive at a diagnosis of ASD Level 1 for the Indian context. As long as a child or adult is performing academically well or doing well at work, people believe it doesn’t really call for a visit to the doctor,” she adds.
Lack of family and work support
Many people affected with ASD Level 1 say that they sought out a diagnosis upon realising that they were different. Families however are not always ready to help access mental health care or accept a diagnosis once it has been made. “It was only when I could finally afford to do it on my own that I started going to psychiatrists in the hopes of being diagnosed,” says Roopa (name changed), 25, a resident of Chennai. She goes on to say: “My parents dismissed my diagnosis. They got aggressive when they heard about me seeking treatment. So I didn’t tell them anything further about it. They continue to remain in the dark. My friends, who are also neurodivergent, are more supportive.”
Experts say that a diagnosis of a mental health issue can frighten families, as mental health disorders continue to be stigmatised in the country. Lack of awareness is compounded by fears of being labelled and ostracised, and so many families find it easier to brush issues under the carpet, even with their children may be having trouble day-to-day.
Even at the workplace, support is often scarce. When Roopa disclosed her diagnosis and sought support in terms of managing sensory overload for instance, she says her diagnosis was used against her. Rushali says she decided not to disclose her diagnosis as she knew her workplace would not be supportive and could even be hostile. “If accommodations such as stimming toys, sensory overload toys, understanding that blunt answers are not rude, are made part of workplace culture, this would help us function better in society,” she says.
Also Read: An exhaustive resource on autism spectrum disorder
The path forward
Doctors say that awareness is the first step: both among mental health professionals themselves, as well as among the lager community, about ASD. “It is important to equip ourselves with knowledge: everyone from parents, teachers, psychiatrists and workplaces need to be aware, so that everyone gets the support they require. In a child ASD Level 1 often gets misinterpreted or missed and underplayed, which affects her or his functioning as the child grows up,” says Dr. Sankaran.
Early intervention they say, whether in children or adults, can help individuals navigate school or work lives better, help with relationships and contribute to improved mental health.
This apart, diagnostic tools specific to the Indian context are also needed, in order to ensure that Level 1 cases are not missed. Developing and making resource materials available in local languages and contexts, awareness programmes for mental health professionals, school and college initiatives as well as sensitising workplaces are all needs of the hour, they say.
Published – August 19, 2025 04:01 pm IST
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