Education & jobs for autistics: Laws exist but is there enough compassion?

Few schools are equipped to cater to children with ASD, spawning a set of educators called 'shadow teachers'. Some parents are even home-schooling to keep their wards career ready

Six-year-old Ayush is autistic and cries and shouts for hours in class each time his parents drop him off at school. He doesn't respond to teachers' instructions and flaps his hands with random objects. A loner, he doesn't mix with other children and spends much of the day running and jumping around, ignoring classroom activities.

"As a mother, I find it difficult to send my son to school," a Mumbai-based mother of another autistic child told Business Standard, requesting anonymity. So she usually waits outside his classroom to ensure he doesn't create trouble for himself. Frequent requests to allow her inside the classroom for the child's safety have been turned down.

"One day, we found a scar on his arm when he returned from school. Our children are innocent. Those who have speech delay cannot tell their parents about such incidents and we remain unaware of what they endure in class or at the playground," she added.

Her biggest fear: "Who will look after my son, when I'm no more?"

While the question is overwhelming, these kids' future depends on their parents' and teachers' support and hard work. Some often contemplate having another child to support the one with special needs.

Autistic children could have speech and mobility issues and may often be slow learners who are averse to socialising. They usually require special therapy sessions and classes to cope with the real world.

Parents of children with neurobiological and developmental disabilities endure a lifetime of struggle, and some are even victims of social stigma.

"It is painful to get a Unique Disability Identity (UDID) card made for my child," said one father.

Education

The Rights of Persons with Disabilities (RPWD) Act 2016, under the Right to Education (RTE), calls for an inclusive system of education under which children with disabilities can fully participate in regular schooling, from the foundational stage to higher education. It also mandates that the learning be suitably adapted to meet the needs of students with disabilities.

The National Education Policy (NEP) 2020 recognises the "importance of creating enabling mechanisms for providing Children With Special Needs (CWSN) the same opportunities of obtaining quality education as any other child".

At the ground level, though, things are different.

"In my long stint as Principal of Golden Heights School, it pained me not to be able to admit children with special needs. We were simply not equipped and didn't have staff trained to handle such kids. Today, after 20 years, I see it very differently. Experience counts", said Nilanjana Dalmia, Education Consultant and Legal Advisor.

"I believe all children with mild special needs must be enrolled in regular schools quite early. After a careful assessment of their disabilities by a specialised doctor, a psychologist, the school counsellor, Principal and parents, children may be placed in the appropriate educational settings. Those with mild-to-moderate disabilities may join mainstream schools that provide a nurturing environment and carefully crafted programmes for them. Severe cases may be enrolled in schools for children with special needs," said Dalmia.

"Institutes like Vasant Valley School and Shri Ram School have a multi-disciplinary special education section, with fully-equipped classrooms and state-of-the-art facilities for children with special needs. They also appoint qualified and engaging teachers, committed and single-mindedly devoted to the cause," Dalmia added.

"The successful journey of every child is rewarding, every step of the way, for both educators and family. Given a chance to run a school again, based on this learning, I'd do it differently and effortlessly," she concluded.

Special schools are needed for moderate to severe cases because they provide valuable support to differently-abled children and their parents. These include a special education curriculum and a safe and focussed learning environment in which the child tries to succeed through their efforts and the learning techniques provided.

However, some mainstream schools do a disservice by not offering proper one-on-one attention to autistic kids and denying them the education they deserve. One father was told his son had been denied admission because his 'sitting tolerance' was low, and he was hyperactive. The dad responded "Why is my son being punished for the school's incompetence when it cannot take charge of him despite having special educators? The fault doesn't lie with my child but with the untrained staff of the institution."
 

A Gurugram-based school refused to counsel and admit a seven-year-old based on his 'overwrought' conduct. Another school said it had admitted one special kid a few years ago because she was vocal, but now it cannot take another special child, especially non-verbal, due to a lack of inclusive classrooms and resources.

Shaloo Sharma, founder and chief service provider, Evoluer Solutions, says: "Many schools don't admit non-verbal autistic children as they don't have well-equipped and knowledgeable staff to handle such kids. While hiring special educators and therapists can be costly, schools are also averse to hiring and training just one person to handle such cases."

According to NEP 2020, governments, parents and schools must work together to resolve such issues to ensure a school does not deny admission.

Home-schooling

Under the RPWD Act 2016, children with disabilities can choose between regular or special education. Some parents, like Ragini Shah (name changed) from Bengaluru, home-school their children to acquaint them with the syllabus, provide a basic understanding of the subjects, and teach them daily life activities.

"Over the past few years, I've learned the approach special educators, speech and applied behaviour analysis (ABA) and occupational therapists (OT) use to teach and train our kids. What they do can be easily taught at home as well with adequate knowledge and resources. My husband and I teach our kid phonics and make him do OT activities to achieve developmental milestones. It's hectic and challenging, but only parents can understand the gravity of the situation and help our kids live their life to the fullest," she said.

"Therapy centres are like schools, hospitals and lawyers. They are well aware that parents will do anything for their children. Further, the better the therapist, the higher the charges. Moreover, there are a limited number of therapists to attend one child at a time. However, instead of approaching a therapist who doesn't charge much but isn't highly skilled, it is better to pay more and go to an expert," said Shivender Singh, an IAF pilot.

Neha Lohia, the mother of a regular five-year-old boy, shared her experience with Business Standard of having an autistic child in her son's school. She said, "This child was my son's batchmate in his football class. At first, it seemed that due to the special needs of that one child, the pace of the entire class would have to be adjusted. Also, there were a few episodes of sudden meltdown, and of kids getting agitated as that child was randomly hitting everyone around him. But within 7-10 days, the situation improved. Kids warmed up to him, and so did he. And he was learning to manoeuvre the ball so well, giving tough competition to everyone. So going by that experience, I'd like to believe that after initial hiccups, the children can organically blend well with a special child in a class. This not only ensures equal opportunity for all but also teaches kids to be compassionate".

Special educators/Shadow teachers

"It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village." This quote by coach Elaine Hall highlights the sensitivity of the child's upbringing by parents and support from friends, teachers, therapists, educators and colleagues.

For special children, shadow teachers need compassion and prudence 'at par' with parents.

After parents, only shadow teachers can gauge how a child's age, understanding, grade level and social-emotional development can cope with academic abilities. Alongside subject teaching, special educators require crucial skills like patience and cooperation to understand the child's special needs.

Schools employ shadow teachers who assist and monitor special-needs children in the classroom for physical, educational and social support and help develop the ability of special-needs kids to function individually.  

Vocational training and employment

Parents and teachers strive hard to ensure children with special needs develop skills that would make them employable and self-independent in future. For autistic adults, governments must consider the need for vocational training and recreational opportunities focusing on their strengths and overcoming interpersonal difficulties.

Along with vocational training, parents must observe their child's different skill sets and interests and notice what the child likes doing the most. Many autistic people, for example, have a passion for music, and some with a good eye for detail do well in tasks involving accounting, numbers, data input and rote memory.

Twelve-year-old Tanishq R Morcha, diagnosed with ASD at age two, shares his culinary skills through his social media channels. When he was five years old, he became interested in watching food videos and cooking games instead of cartoons. Doing kitchen chores helped Tanishq hone his motor skills. Now, he enjoys cooking Indian and foreign food items like idli, dosa, soups, croquettes, pickles, pancakes and curries.

Tanishq R Morcha | Photo: @WONDERFUD1

During the lockdown, the boy's parents created a YouTube account for him with the name: "Food is Ishq with Tanishq!" showcasing videos of different cuisine prepared by the lad.

Autistic people often find it challenging to explain their problems, so it becomes crucial for colleagues to help an ASD employee thrive in a competitive work environment. To prioritise empowerment, offices can engage a support worker with whom such employees can share their concerns and learn the know-how of the corporate culture.

Business Standard also requested TCS, CBRE and ICICI Prudential Life Insurance to discuss provisions and inclusivity to utilise and empower the untapped potential of hiring people with special needs, especially autism.

"TCS workforce includes employees who are neurodiverse, especially those on the autism spectrum. We are also discussing with various organisations in different geographies for autism-specific hiring pilots," said Preeti D'mello, Global Head, Culture & Diversity & LeaD Academy, TCS.

"TCS is focused on creating an enabling environment through policy formulation, digital and built environment accessibility as well as creating an inclusive ecosystem. Our various Employee Resource Groups (ERGs) provide a safe space for communities to meet, ideate, learn and share experiences. It has three dedicated Employee Resource Groups (ERG) that bring diverse perspectives to the neurodiversity arena. Our ERG NeuroWonder aims to create a safe space for neurodiverse associates and their allies. The ERG PACT is for parents, allies and caregivers of children and loved ones with a disability to share experiences and challenges. The ERG accessPower is a network of associates that believe in fostering accessibility for inclusion where conversations are held on creating access for all," D'mello added.
 

Anshuman Magazine, Chairman & CEO-India, South-East Asia, Middle East & Africa, CBRE, said, "We at CBRE continue to keep inclusivity and the specially-abled community at the core of human resource planning and policies. The company has been an enabler of professionals with autism and down syndrome for over a decade's hiring, recognising and cultivating their skills in the field of Data Entry and Data Management across various departments in India".

CBRE also partners with NGOs like Muskaan, an adult training centre for people with autism and down syndrome. A few of the recruits from the NGO have been an integral part of the India marketing team for over five years, actively supporting varied functions within the group.

"Autism is a wide spectrum of neuro-developmental conditions and the key is to identify and assign work that utilises their natural capabilities and avoids exposure to situations that may potentially aggravate their condition. Sensitisation and training of managers and coworkers is essential along with assignment of buddies who can play a supportive role in integrating them in the workforce", said Urvi Chhaya, Senior Vice President - HR, ICICI Prudential Life Insurance.

Cafe Arpan is a Mumbai-based restaurant that hires people with developmental and intellectual disabilities (PWDDs). Launched in  August 2018, the restaurant has a team of specially-abled adults. The cafe is an initiative of an NGO known as Yash Charitable Trust.

Photo: @cafearpan

"Cafe Arpan identifies an individual's strength and skills during the training process and encourages and empowers the employees to enhance their skills and develop self-confidence. The menu at our restaurant is such that our team members can easily learn and prepare", said Ashaita Mahajan, Trustee of Yash Charitable Trust and Co-founder of Cafe Arpan.

"For example, we have an employee named Nikhil who is good at accounting and he does all the bank-related work. Another young adult Aaron, we call him chef Aaron, loves cooking and he has an Eidetic memory, which means he remembers all the recipes. Aarti, a social butterfly, does the job of a greeter, she serves people. Aarti loves music, so she also entertains her customers with music at times", she added.

"Cafe Arpan has a supportive environment where we encourage our team members to be "who they want to be". About 90 per cent of Cafe Arpan's workforce has specially-abled employees, but there is also a support system behind them in the form of a manager, kitchen assistant and volunteers. If more ventures like Cafe Arpan are established, then it would make the world more 'inclusive', said Mahajan.

"Cafe Arpan is a social enterprise that believes in showing the world what our team members are capable of and it is a live demonstration of our vision to let people live a life of self-respect and dignity", Mahajan concluded.

Infra safety

Indian households often overlook the specific requirements of children with special needs. Parents and caretakers of such children must protect their households against potential mishaps.

For instance, gas and electrical appliances must have hidden or highly-secured buttons and knobs. Many appliance manufacturers provide products with additional safety features. Medicines should be locked away, and knives and household repair and installation tools like chisels, screwdrivers and grouting tools should never be left out in the open for the child to find and play or experiment with.

"Leading developers have come up with the concept of child-centric homes, but no housing projects currently cater specifically to children with special needs. Presently, modern smart home features include versatile video-monitoring and alarm features that can be either put to use immediately to monitor children or be suitably modified to be pressed into service for this purpose", says Priyanka Kapoor, vice president, Research at Anarock.

What is autism?

Autism Spectrum Disorder (ASD) affects brain development and transcends ethnic, racial and social boundaries, though it is more prevalent in boys than girls. Its symptoms and severity vary greatly in toddlers. In most cases, the child initially behaves normally and shows the usual aptitude for learning. But some children may display symptoms such as speech delay, stimming, impatience, avoiding eye contact, poor communication and response to commands and echoing words quite early.

Autism manifests at birth or within the first two-and-a-half years. Often described as living in a world of their own, autistic children display repetitive actions and unusual behaviours with no apparent purpose and show little or no interest in people, including their parents.

They express themselves differently. If they get upset, show discomfort, or simply walk away if they find you annoying. And if they like you, they may smell your hair, smile at you, or give you a small hug.

According to World Health Organization (WHO), one in 100 children aged ten or under has ASD.

In India, parents of autistic children often cannot get an accurate diagnosis of the condition during the crucial first 18 months after delivery. Medical intervention must happen between birth and age 3 to improve communication and social skills, so parents must start tracking behaviour patterns and learning abilities when this child is very young.