*****We need to talk about autism–Rashmi Das writes:–INDIAN EXPRESS

Clipped from: https://indianexpress.com/article/opinion/columns/we-need-to-talk-about-autism-7848698/

Rashmi Das writes: It is a major paediatric concern. Our systems have to be ready for it

Official reporting of autism numbers in India is extremely weak.

“April is the cruelest month,” wrote TS Eliot in The Waste Land. Families with autistic children are familiar with cruelty and at this time of the year, a mirror should be held up to society. April is the autism awareness month and April 2 is the Autism Awareness Day — both mandated by the United Nations.

Autism diagnosis usually comes wrapped with a label of being “abnormal”. Clinically, it is appended with a heavy negative list of what a child cannot do and predictions of hopelessness. For a parent it is a devastating experience.

Autism is not a “disease” which can be cured. It is a condition that arises from certain neurobiological factors. It is characterised by a lifelong set of developmental impairments in the domains of communication and social responsiveness and is accompanied by a set of restrictive and repetitive behaviours. If you are autistic today, you will be autistic tomorrow, and the day after.

Families with autistic children in India face a void. After the diagnosis, mothers receive a lot of wisdom from charlatans — circle this or that street crossing, go around trees, make your child drink the water touched by a crow and your child will start speaking, wear amulets and make your child also wear one. At the other end are musings of the educated: Einstein was autistic, he had delayed speech, as was Mozart and a long list of celebrities is produced. Awareness is low, the stigma is high.

Official accounting of those with autism is extremely weak. A Government of India statistical profile from 2021 about Persons with Disabilities (PwD) does not account for autism since it bases itself on the Census data of 2011. Autism was recognised as a disability in 2016 under the Rights of Persons with Disabilities (RPwD) Act, 2016. We have a serious data deficit in this field and consequently getting policy attention is difficult.

The Department of Empowerment of Person with Disabilities runs the Unique Disability ID (UDID) project including the issuance of cards and the creation of a national database. The latest data is not available in the public domain. As on September 13, 2019, the all-India statistic reveals a total of 10,338 persons with autism. Delhi reported zero as did many other states. The ground reality belies this. Learning centres, speech and occupational therapy (OT) clinics are common in Delhi localities. Similar is the status in many cities.

The bulk of learning for autistic children in most schools, private and NGO-run, which is implemented through Individualised Education Plans (IEP) consists of the following: Joining dots, tracing letters, putting objects from one container to the other, cutting, chopping and peeling veggies, packing, threading paper bags etc. All teaching is permanently in Early Intervention Programme (EIP) mode. There is no curriculum, no progression plan and no transition roadmaps for their induction into teen years and adulthood. Families are left to fend for themselves. And they are desperate.

It is a crushing setback for a mother to know that her child will not learn like other children. While other mothers can hang out in the evening at parks as their children play, the autism mom would be rushing to or coming back with her child from some therapy clinic. People on the outside cannot even imagine what a rock and a hard place the autism mom is boxed in. Called mad and feral, the autistic child is avoided in social settings, not invited or befriended in the community. A mother of an autistic child knows what name calling, discrimination and ostracism look and feel like. The physical and mental toll of raising an autistic child is exacting. It’s like being in postpartum for years.

Research suggests that sleep disturbances — fragmented and erratic sleeping, frequent and prolonged night waking — impact over 80 per cent of children with autism. This deficit is passed to the mother on a daily basis. Her life oscillates between vigils by night and therapy hopping by day. A poor sleep hygiene impacts the child’s physical and cognitive function. It can exacerbate problem behaviours leading to a litany of complaints from the school or worse still, the exclusion of the child.

Supervisory load is high. Autistic children have a tendency to wander off. Paediatric literature based on parent surveys puts this at roughly 50 per cent. Many mothers who are professionals drop out. Those who remain have to endure judgmental comments about their mothering and caregiving.

Autism is no longer a fringe concern. In the US, the Centre for Disease Control and Prevention keeps a tight lens on prevalence data conducting multi-site studies across states. There is a dynamic Interagency Autism Coordinating Committee (IACC) under the US Department of Health & Human Services. In the UK, the Department of Education (DoE) reports on autistic students in schools and also honestly puts out exclusion data. Autism strategy (2022-2026), the most ambitious plan so far in that country, has committed big investments for reducing diagnosis waiting times, improving public understanding of autism and training spends.

Health, education and awareness campaigns are the three domains the government should focus on. The first task is ramping up autism screening. Unlike Down’s Syndrome, which is screened prenatally through triple test and amniocentesis, there are no biomarkers to detect the risk of autism. As science advances, similar methods of maternal tests could be possible and might even lead to prevention of autistic children being born. This is an ethically charged debate as it raises the spectre of eugenics and the loss of particular genes from the human gene pool. However, this is a futuristic debate. Scientific practices as they exist at present are standardised tests — childhood autism rating scale — of behaviours and developmental milestones.

In India, routine paediatric health checks mostly focus on anthropometric parameters, cure for seasonal symptoms and the vaccination schedule. Developmental milestone mapping is a gap area. This causes delay in autism diagnosis. To tackle this, in 2019, the All India Institute of Medical Sciences (AIIMS), launched an app — PedNeuroAiimsDiagnostics. The app, available for free on Google Play and App Store. makes certain standardised parameters available to all paediatricians. It has two sections. Section A has 28 questions to assess social interaction or communications skills and restricted, repetitive behaviour. Section B has nine questions for analysis of questions in Section A. The official diagnosis has to be carried out by either a paediatric neurologist or a child psychiatrist. But mothers can use the know-how of the app as an early alert system. Despite being very robust, the app has not seen much traction. The Ministry of Health and Family Welfare should drive its adoption as a G2C measure in child healthcare systems of our country.

Second, the big tent approach of special education is not working. What works for a child with Dyslexia or a child with Down’s Syndrome will not work for a child with autism. There is no one autism. There are many autisms. Lorna Wing, the towering figure in autism research called it a “spectrum of conditions”, from the severely affected to the high functioning. After changes in global diagnostic criteria brought through DSM-V (Diagnostic and Statistical Manual of Mental Disorders), Asperger’s Syndrome, a condition without learning disability but with similarities to autism was also included as a sub-group of autism. Therefore, curriculum frameworks responsive to the spectrum of autism are the need of the hour.

Flexi-syllabus and the use of scribes, allowed by CBSE to fulfill the provisions of RPwD Act, 2016 faced a dissemination challenge — this the CBSE itself acknowledged while notifying the progressive exemptions for secondary and higher secondary exams. How many have availed the facilities? There is no government data but based on parental narratives from different cities, it can be safely said that flexi-CBSE syllabus and NIOS (National Institute of Open Schooling) curriculum can be accessed only by a microscopic minority among the autistic learners.

The National Education Policy (NEP) 2020 states, “by 2025, at least 50 per cent of learners through the school and higher education system shall have exposure to vocational education, for which a clear action plan with targets and timelines will be developed.” This principle should be applied for autism education, given that autistics have special systemising abilities, focused interests and an aptitude for vocational tasks. But before this happens, teaching the teachers is a crucial step. RCI (Rehabilitation Council of India), NCERT (National Council of Educational Research and Training) and NIOS must collaborate for creation of learning material and teacher training programmes. The schools and learning centres can build their IEP layers based on this.

Third, autism awareness campaigns need to popularise legal rights and government benefit schemes which includes free education and financial support for benchmarked disabilities. This is of great help to poor families who have scarce resources. The National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMED) under the Ministry of Social Justice and Empowerment disseminates such information, however its awareness needs to be raised. The UDID card issuance facility has to be liberalised and decentralised. Presently, few government hospitals are authorised to do this work, increasing wait times. The process is also cumbersome. Ease of access is required. RCI approved institutions and private hospitals can be added to this list.

Autism is emerging as a major paediatric concern. Our systems have to be ready for it.

This column first appeared in the print edition on April 2, 2022 under the title ‘Joining the dots on autism’. The writer is editor, TelecomLive & Infralive

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