Raising a child with autism in India has its ups and downs. Would you like to explore more about them? In this blog post, we share some common difficulties and rewards of raising a child with autism in India and how some parents cope with them. We also provide valuable resources and tips for parents and caregivers who want to support their child with autism.

What is Autism?

Autism, a condition that affects the brain’s development, influences how a person communicates, interacts, and learns. It is a spectrum disorder that affects people in different ways and degrees. A few typical indicators and manifestations of autism are:

• Difficulty with social skills, such as making eye contact, understanding emotions, or taking turns

• Difficulty with communication skills, such as speaking, listening, or understanding gestures

• Repetitive or restricted behaviours, interests, or activities, such as rocking, flapping, or lining up objects

• Sensory issues, such as being over or under-sensitive to sounds, lights, textures, or tastes

• Challenges with transitions, routines, or expectations, such as coping with changes or following instructions

Autism is not an illness or a misfortune. It is not a consequence of bad parenting or destiny. It is not something that can be healed or corrected. It is a part of a person’s identity and has strengths and challenges.

Challenges of Mothering a Child with Autism in India

Mothering a child with autism in India can be very challenging. Some of the common challenges that parents face are:

• Finding the proper support and resources for the child. Autism is still poorly understood or accepted, and many myths and misconceptions exist. Many blame the parents for the child’s condition or tell them to pray harder or try some miracle cure. They don’t understand that autism is a neurodevelopmental disorder that affects how the child communicates, interacts, and learns.

• Only a few schools, therapists, and doctors have the training and experience to work with children with autism. The existing ones are often expensive, far away, or have extended waiting lists. Parents must research and advocate for the best options for their child’s education, health, and well-being. They also have to deal with a lot of paperwork, bureaucracy, and discrimination to access the services and rights that their child deserves.

• Balancing the child’s needs with the needs of themselves and their families. The child requires much attention, care, and support throughout the day. He or she has difficulty with transitions, routines, and social situations. He or she can get overwhelmed by sensory stimuli, emotions, or expectations. He or she can also have meltdowns, tantrums, or self-injurious behaviours when he or she is frustrated or stressed. Sometimes the parents feel exhausted, isolated, and helpless as they try to calm their child down or prevent him or her from hurting themselves or others.

• Dealing with the expectations and pressures from their families, friends, and society. They often don’t understand why they can’t attend social events, work outside the home, or have another child. They judge them for their parenting choices or offer unsolicited advice or criticism. They don’t appreciate the hard work and sacrifices they make for their child daily.

Joys of Mothering a Child with Autism in India

Despite all these challenges, mothering a child with autism in India also brings much joy and fulfilment. Some of the positive aspects of raising a child with autism are:

• Learning new things every day from the child. The child is not defined by his or her diagnosis. He or she is a unique and wonderful person who has his or her own strengths, interests, and personality. He or she teaches them new things every day and makes them laugh with his or her humour and creativity.

• Showing love in their ways and making them proud of their achievements and progress. The child may not express love in conventional methods, such as saying “I love you” or giving hugs and kisses. Still, he or she shows love in other ways, such as sharing a toy, making eye contact, or smiling. The child also makes them proud of his or her achievements and progress, no matter how big or small they are. They celebrate every milestone and every step forward with joy and gratitude.

• Motivating them to improve themselves and to stand up for their rights and respect. The child motivates them to be stronger, wiser, and more compassionate. They learn to appreciate human beings’ diversity and beauty and respect their differences and similarities. They also learn to advocate for their child and for other people with autism and to raise awareness and acceptance in their communities. They become more confident and assertive in standing up for their child and themselves.

• Connecting with other parents who are in the same boat as them. They find support, advice, and friendship from other parents who understand what they are going through. They share their stories, struggles, and successes with them, making them feel less alone. They also learn from their experiences and insights and get inspired by their courage and resilience. They are their allies and their lifeline.

Resources and Tips for Parents of Children with Autism in India

If you parent a child with autism in India, you may sometimes feel overwhelmed or lost. You may wonder where to start or what to do next. You may need some guidance or help along the way. Here are some sources and suggestions that may assist you:

• Collect a lot of accurate data on autism. The more you know about autism, the better you can understand your child and his or her needs. You can find reliable information about autism from various sources, such as books, websites, podcasts, videos, webinars, etc. Some of the sources that we recommend are:
  • Learn Autism: The world’s leading digital autism resource that offers evidence-based information on various topics from pre-diagnosis to adulthood using bite-sized, on-demand video tutorials, downloadable workbooks, webinars, and more.
  • Autism Parenting Magazine: A monthly digital magazine that provides practical advice and guidance for parents on topics such as education, therapy, health, nutrition, behaviour management, etc.
  • Autism Speaks: A worldwide organization that advocates for solutions for the challenges of individuals with autism and their families through activism, research, awareness, and support.
  • National Trust: A statutory body under the Ministry of Social Justice and Empowerment that provides legal guardianship certificates, schemes, programs, training materials, and other resources for persons with autism and other developmental disabilities in India.

• Seek professional help as soon as possible. Early intervention is crucial for improving the outcomes and quality of life of children with autism. The sooner you seek professional help for your child, the better chances he or she has to develop his or her skills and abilities. You can consult various professionals who can help your child in different areas, such as:
  • Paediatrician: A doctor who can diagnose your child’s condition, monitor his or her health status, and prescribe medications if needed.
  • Psychologist: A mental health professional who can assess your child’s cognitive, emotional, and behavioural functioning and provide psychotherapy, counselling, or behavioural interventions
  • Speech therapist: A professional who can help your child improve his or her communication skills, such as speaking, listening, or understanding gestures.
  • Occupational therapist: A professional who can help your child develop daily living skills, such as eating, dressing, or toileting. They can also help your child with sensory, motor, or social skills.
  • Special educator: A teacher who can design and implement an individualized education plan (IEP) for your child that suits his or her learning style, needs, and goals. They can also provide your child academic support, remediation, or enrichment.

• Find a suitable school or program for your child. Education is a fundamental right for all children, including those with autism. You can choose a school or program that best meets your child’s educational needs and preferences. There are different types of schools or programs available for children with autism in India, such as:
  • Inclusive schools are traditional schools that admit and accommodate children with special needs and their typically developing peers. They provide an inclusive and supportive environment for children with autism to learn and grow with their classmates. They also offer special educators, therapists, and other support staff to cater to the individual needs of children with autism.
  • Special schools: These schools exclusively cater to children with special needs. They offer a tailored and organized learning setting for children with autism to grow and enhance their skills and abilities. They also provide trained and experienced teachers, therapists, and other professionals who understand and work with children with autism.
  • Home-based programs: These provide education and therapy for children with autism at their homes. They involve the parents and caregivers as active partners in their children’s learning process. They also provide flexibility and convenience for the families of children with autism.

• Join a support group or community of parents of children with autism. Parenting a child with autism can be lonely and stressful at times. You may feel isolated, misunderstood, or overwhelmed by your challenges. You may need some emotional support, guidance, or companionship from others. You can join a support group or community of parents of children with autism in your area or online. Some of the benefits of joining a support group or community are:
  • You can share your experiences, feelings, and thoughts with others who understand and empathize.
  • You can learn from the insights, tips, and resources others offer.
  • You can get inspired by the stories, successes, and achievements of others.
  • You can make new friends and connections who can support you and your child.

• Some of the support groups or communities that you can join are:
  • Autism Society of India: An organization that works for the common good and strives to improve the well-being of people with autism and their loved ones by promoting their rights, raising awareness, providing education, conducting research, and offering support.
  • Action For Autism: A national non-governmental organization that provides services, training, publications, and resources for individuals with autism and their families.
  • Forum For Autism: A parent support group that provides information, guidance, counselling, and assistance to parents of children with autism in Mumbai.
  • Autism Connect: An online platform that connects parents of children with autism with professionals, services, and resources across India.

• Take care of yourself and your family. You might put your own health and happiness on hold as you concentrate on meeting the needs of your child who has autism. However, taking care of yourself and your family is also essential. To cope better with the challenges and stress of raising a child with autism, looking after yourself and your family is critical. This can also help you to be a more effective and positive parent and role model for your child. Some of the strategies that you can use to look after yourself and your family are:
  • Take some time out for yourself every day. Do something that makes you happy, relaxed, or refreshed, such as reading, meditating, exercising, or listening to music.
  • Seek professional help if you feel depressed, anxious, or overwhelmed. Asking for help when you require it is nothing to be ashamed of. You can consult a counsellor, psychologist, or psychiatrist who can help you deal with your emotions and mental health issues.
  • Maintain a healthy lifestyle. Eat well, sleep well, and stay hydrated. Avoid smoking, drinking, or using drugs. These can affect your mood, energy, and health negatively.
  • Spend quality time with your spouse, partner, or significant other. Communicate openly and honestly with them about your feelings, needs, and expectations. Support each other emotionally and practically. Keep the romance alive by going on dates, giving compliments, or expressing affection.
  • Enjoy meaningful moments with your other kids, if you have any. Ensure they feel loved, valued, and included in your family. Listen to their concerns, questions, or feelings about their sibling with autism. Involve them in some activities or decisions related to their sibling with autism. Praise them for their achievements and efforts.
  • Seek support from your extended family, friends, or neighbours. Ask them for help when needed, such as babysitting, running errands, or providing transportation. Accept their offers of help or advice graciously. Share your joys and sorrows with them.

Conclusion

Mothering a child with autism in India is not for the faint of heart. It is a journey of love, patience, and resilience that requires a lot of courage and dedication. It also brings a lot of joy and fulfilment. In this blog post, we have shared some of the common challenges and joys of raising a child with autism in India and how some parents cope. We have also provided valuable resources and tips for parents and caregivers who want to support their child with autism. We aim to share helpful and meaningful information in this blog post. Your feedback is precious to us. We welcome your thoughts, feelings, and wishes. We invite you to tell us what you have in mind. We would love to hear from you. Thank you for reading.

Resources –

• India Autism Center (IAC). This website provides information about the vision, design, and services of the India Autism Center. This planned facility aims to provide a holistic and dynamic living and learning environment for individuals with autism. It also lists some regional providers of autism-related services in India. – https://indiaautismcenter.org/

• 5 apps to support people with Autism – India Today. This article reviews five apps that can help people with autism and their caregivers in various aspects, such as communication, education, therapy, and information. The apps are Learn Autism, CogniAble, Mom’s Belief, Avaz AAC, and Autism Parenting Magazine. – https://www.indiatoday.in/education-today/featurephilia/story/5-apps-to-support-people-with-autism-1798353-2021-05-03

• Autism spectrum disorder in India: a scoping review – PubMed. This scientific paper reviews the existing literature on autism spectrum disorder in India. It covers various topics such as clinical profiles, interventions, biomarkers, psychological, social, epidemiological, and risk factors. It also identifies the gaps and challenges in autism research and practice in India. – https://pubmed.ncbi.nlm.nih.gov/32602754/