'Diagnosed with SLD by accident’: Adults fighting ADHD, dyslexia, dyscalculia have neither measure nor relief

Aman, 26, grew up in Dhanbad. He studied in the village school and has just completed his BA from Indira Gandhi National Open University (IGNOU). But his journey from school to college graduation was exceptionally long.

He failed his board exams several times. He had science in Class 12 with physics, chemistry and mathematics, and greatly struggled with the last, failing repeatedly in the subject. He cleared only when the Covid pandemic forced exam boards to relax the norms. It was also then that a special educator friend asked him to get assessed for a learning disability. The assessment ended in a diagnosis – dyscalculia, one of the special learning disabilities recognised by the Rights of Persons with Disabilities Act 2016.

The assessment tool his friend used was meant for children. Assessment tools to identify learning disabilities in India are only for children even though Specific Learning Disorder (SLD) have been recognised and those afflicted protected under law since 2016.

“It was already very late by the time I got to know I had a learning disability. There was no facility in school to let us know what problems I had. I was good in English and other subjects and would wonder, ‘What is it with maths?’ I’d be told that I was being careless, but now I know what my actual struggle is,” said Aman.

He is now preparing for government exams as that is the only option left. “In the corporate sector, how will I justify the many year gaps, the many years I failed?”

The absence of assessment tools means those living with various SLDs, such as dyslexia, dysgraphia and dyscalculia, mostly remain outside the structures of support – such as they are – for the disabled, like getting disability certificates or reservation under the Act.

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Specific Learning Disorder: The kinds and prevalence

The most commonly-known is dyslexia, a reading disability. Dysgraphia results in distorted writing despite thorough instructions. Dyscalculia is the problem in understanding or learning mathematical calculations.

The Dyslexia Association of India, categorises more SLDs, such as dyspraxia, conduct disorders and ADHD.

Dyspraxia is a neurodevelopmental condition that affects physical coordination, motor planning, and movement. Conduct disorder is characterised by a pattern of repetitive, persistent aggressive, antisocial, or defiant behavior.

There is no government data available on Indians living with SLD. However, a 2022 study available on the US National Institutes of Health’s PubMed Central (PMC), titled Prevalence of Specific Learning Disorders (SLD) Among Children in India: A Systematic Review and Meta-Analysis, citing several other studies, says that the “prevalence of SLD is reported to vary from 3% to 10% [in India], and about 5% to 15% worldwide”.

One of the studies referred to involved the diagnostic screening of 8,133 children using two tools – the National Institute of Mental Health and Neurosciences (NIMHANS)-SLD index and the Grade Level Assessment Device (GLAD).

It concluded, “Nearly 8% of children up to 19 years have SLD. There are only a few high-quality, methodologically-sound, population-based epidemiological studies on this topic.”

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The study added, “There is a pressing need to have large population-based surveys in India, using appropriate screening and diagnostic tools. Constructing standardised assessment tools, keeping in view the diversity of Indian culture, is also necessary.”

The paper also stated, “Some tools like the NIMHANS index for SLD can only be administered in English-medium schools, whereas in India, about 42% of students are studying in Hindi-medium schools. Although many tools are developed in regional languages like Tamil, Kannada, and Marathi, there is no nationwide acceptability of these tools to certify children with SLD.” Blurb

The absence of a standard measure of such disabilities has very real consequences. Shivam (he didn’t want his last name published), a maths student at Indian Institute of Technology (IIT) Roorkee, completed schooling without ever being diagnosed. He suspected he had dyslexia after years of struggle with reading. “I studied in central schools so there was no assessment as such which was ever held. I got to know of my problem when I was in college and did my own research. In our country, once you become an adult, even the option [of getting assessed] is not there.”

It is only in 2022 that the National Council for Educational Research and Training (NCERT) developed the PRASHAST – Pre-Assessment Holistic Screening Tool – app, for schools to identify the 21 learning disabilities.

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SLD: Supreme Court petition

In 2023, PhD and former Jawaharlal Nehru University students union president N Sai Balaji moved the Supreme Court seeking its intervention in the creation of guidelines for the assessment of those with learning disabilities.

“More than anything else my diagnosis was an accident, which clearly shows the state of affairs for screening of learning disability in India,” Balaji told Careers360.

“The second wave of COVID had ended, and it had started affecting my PhD writing. There was a death in the family which I thought was affecting me. When I told my friend he referred me to a psychiatrist and I started therapy. In the first two sessions itself she said it was clear it was something else and nothing to do with whatever events had taken place in my life. She did not label it but said it is something to do with learning. By the fifth or sixth session, she said you have a learning disability. Since she had an experience of working with children she was able to identify it.”

Then in his second year of PhD, it came as a shock to him.

“It took me three years to take the test. Children’s First, an organisation in Delhi provided the test free of cost to me, which would have otherwise cost anywhere between Rs 35,000 and Rs 40,000. It is a package of three tests.There are three-four sittings, after which the psychologists provide full details,” said Balaji.

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The tests conducted on Balaji included the Bangor Dyslexia Test (BDT) and the Wechsler Adult Intelligence Scale (Revised) – used in the United Kingdom and other countries as psychometric assessments for diagnosing dyslexia in adults. These tests are not accepted in India and not conducted in any government hospital which might be responsible for issuing disability certificates.

Balaji was diagnosed with dyslexia and dysgraphia and suddenly his experience with education, from school to PhD started making sense to him. “I always had problems reading languages, my second language was Hindi. I never passed Hindi until I was in Class 10. I still get confused by certain matras of Telugu. English does not have matras but some letters are still difficult. I would think I have written but would forget mid-structure and teachers always said I was careless and made silly mistakes,” he said.

The problem carried well into adulthood and research. “My supervisor would say, ‘When you come to talk to me you are someone else and when you write you are something else.’ She would say, ‘Write a draft and come sit with me.’ On many occasions, she would actually want me to narrate what I wanted to say and help me structure it. I was lucky to have that kind of ecosystem and support,” said Balaji.

Teaching is no longer an option. After completing his PhD, he taught at a private university for a spell but it became impossible to continue. Once he was diagnosed, Balaji filed several RTIs to find out why adults with SLDs were not being screened.

Aman added, “When those with visible disabilities are struggling to get a disability certificate and avail benefits, for disabilities like ours, which are not visible to the open eye and there are no ways to even assess, getting a certificate is like a dream.”

NIMHANS results in 3 years

In court, Balaji’s lawyer had referred to the movie Tara Zameen Par to explain the underlying conditions.

In their judgment delivered last month, Justices Manoj Mishra and Manmohan, stated, “From the own stand of the petitioner, we find that he has been able to obtain a PhD degree. Thus, apparently, his professed disability has not hampered his progress in life. In such circumstances, we deem it appropriate to close these proceedings by recording the stand of NIMHANS that they are working on assessment tools/ tests for determining adults.”

NIMHANS Bengaluru had told the court that they set up a committee in October, 2024, for framing guidelines for assessment, chaired by the head of the department of child and adolescent psychiatry.

In the affidavit, NIMHANS stated, “As there is currently no standardised and validated tool for SLD assessment in adults, Dr. Thomas Kishore, professor of clinical psychology, and Dr.Roopesh, additional professor of clinical psychology, have developed a concept note that proposes a 3-year multi-centre project for the development and validation of tools across multiple regions of India.”

The court has also given NIMHANS three years. “In case there is no development in that regard in the next three years, it shall be open for the petitioner to seek for revival of these proceedings.”

Balaji added, “The court made it seem like it was a crime that I had completed my PhD. But

People don't realise the kind of impact it can have on a person and ultimately it turns into a trauma. For my generation it is gone, I hope with this tool being prepared, future generations can benefit.”