Dealing with autism: What you need to know about the disorder and how you can help people with it

Thane-based Rishabh Birla, who lives with autism, has always found it difficult to understand and comprehend non-verbal communication, social cues and body language. The challenge has also extended to his social skills where it often becomes difficult for him to make and maintain friendships. The 27-year-old policy analyst explains, "Due to differences in social communication, perception and processing, it causes difficulties to interact with people, regulating my own emotions, as well as issues in executive functioning like planning and organising."

Unfortunately, people don't always understand situations or people who are on the autism spectrum, due to the lack of awareness and that is where people from the community face challenges in everyday life. "The ableism, as well as the world, is not accessible for autistic, disabled as well as neurodivergent communities. The systems and processes are not made according to us, we have to self-advocate for accessibility needs," highlights Birla. It is also the reason why he feels that there is a lack of support and resources to support autistic people on every front from school to work.

Every year, World Autism Awareness Day is celebrated on April 2 around the world. It is a day dedicated to raising awareness about the disorder among individuals with the condition. However, the conversation around it shouldn't be limited to the particular day like any other health condition because only when there is more awareness will people who face different kinds of challenges be able to live a better life. Even as Birla lays out the challenges, he has seen a lot of change in the last 15 years as far as awareness is concerned but believes a lot more can be done to help those with autism.

Mid-day Online spoke to Dr Neelu Desai, consultant - pediatric neurologist and epileptologist, PD Hinduja Hospital & MRC, Mahim, and Dr Jigyasha Sinha, consultant - paediatrics neurologist and epileptologist, Kokilaben Dhirubhai Ambani Hospital Mumbai to help people understand more about autism. They not only share the misconceptions but also share how the community, education institutions and civic authorities can help those with autism lead a better life.

What is autism and how is it caused?
Desai: Autism is a developmental disorder characterised by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behaviours. These symptoms become evident before a child turns three years. The exact cause of autism is not well understood but various genetic and environmental factors have been implicated. Autism affects information processing in the brain by altering connections and organisation.

Sinha: Autism, or Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects communication, social interaction, and behaviour. The exact causes of autism are not known, but it is believed to be the result of a combination of genetic and environmental factors, such as changes in brain development, genetic mutations, and exposure to certain chemicals, infections and the mothers mental state during pregnancy.

What are the challenges faced by those suffering from autism?
Desai: Difficult and challenging behaviours, deficits in speech and communication and sensory issues with difficulty processing and integrating sensory information, or stimuli, such as sights, sounds, smells, tastes and/or movement are the main challenges faced by those with autism. Besides these, gastrointestinal discomfort, epilepsy and sleep problems can also be seen in addition.

Sinha: Individuals with autism face a range of challenges, including difficulty with social interaction and communication, repetitive behaviors or routines, sensory sensitivity, and difficulty with changes in routine or new environments. These challenges can make it difficult for individuals with autism to navigate social situations, form relationships, and adapt to changes in their environment.

How can family and friends help those with autism?
Desai: Friends and families need to show unconditional support for those with autism. They should encourage their minor achievements too and be sensitive to their needs. Understanding the reason behind the difficult behaviours and trying to find out the antecedents can often help in managing them. It is important to identify their strengths and focus on developing those. Extended family and friends should be supportive of the parents and not critical as they often go through severe emotional stress, depression and marital conflict. If possible, they can contribute in childcare which gives parents time to pursue their interests. Raising awareness about autism in public and helping form parent support groups can be very useful.

Sinha: Family and friends can support individuals with autism by understanding their unique challenges and needs, being patient and compassionate, and helping them to develop and practice social and communication skills. Additionally, creating a safe and predictable environment can help individuals with autism feel more comfortable and secure.

How can educational institutions help those with autism?
Desai: Inclusivity is the key for educational institutes. Identifying the positive attributes of these children and helping them improve on those will go a long way in their well-being. They should not discriminate but rather reinforce fellow students to be supportive and helpful to these students. Special educators, flexibility in curriculum and shadow teachers can help them continue normal schooling. Incorporating various behaviour and occupational therapy facilities in school itself may also alleviate the stress of additional travel in parents.

Sinha: Educational institutions can help individuals with autism by providing individualised support and accommodations, such as sensory-friendly environments, visual aids, and specialised teaching methods. Additionally, promoting inclusion and understanding among students and staff can help create a supportive and accepting school environment for individuals with autism.

What are the common misconceptions about those with autism?
Desai: Common misconceptions are that autistic people cannot feel emotions. Others are that they are intellectually disabled and cannot learn. Often certain food items or vaccinations are thought to be the reason behind autism. Other misconceptions are that bad parenting or rigid parenting may cause autism.

Sinha: Common misconceptions about those with autism include the belief that they lack empathy, that they are intellectually disabled, or that they are unable to lead fulfilling lives. In reality, individuals with autism can have a wide range of strengths and abilities, and with appropriate support and accommodations, they can lead happy and fulfilling lives.

How can city planners or local municipal corporations help improve public spaces for those with autism?
Desai: Creating more open spaces and parks can help children with neuro-disabilities. Contact with nature alleviates multiple sensory-motor, emotional and social problems in children with ASD, as it reduces their anxiety levels and enhances their sensory skills. Public spaces can also give good opportunities for socialising and interacting with other children. Opening more therapy centres in public hospitals and training professionals to impart these therapies will be very beneficial in the care of ASD.

Sinha: City planners and local municipal corporations can help improve public spaces for those with autism by considering their unique sensory needs, such as minimising loud noises and bright lights, providing quiet spaces for relaxation, and ensuring accessibility for individuals with mobility challenges. Additionally, promoting acceptance and understanding of individuals with autism can help create a more inclusive and welcoming community.

Also Read: World Autism Awareness Day 2023: Revolutionising furniture for the holistic development of autistic people