Conducted by Marcia Questel, MS Ed, BCBA and David Celiberti, PhD, BCBA-D

We had the good fortune to meet Aboli Jadhav in December of 2021 when she initially expressed interest in volunteering for ASAT. She ultimately joined our Externship which she completed in April of 2023. We thought it would be wonderful to share her story as a mom of a newly diagnosed child in India, her family’s journey, and her experiences serving as an Extern.

Marcia and David: Please share your experience as a parent of a child with autism. Can you tell us a bit about your family?

Aboli and her daughter, Navya

Aboli: I was born and raised in Maharashtra, India. I have completed my bachelor’s degree in computer science and engineering. Currently, I am a stay-at-home mom and love spending time with my daughter. My hobbies include reading, dancing, and spending time outdoors. My husband and I were married in 2016, and he is also a software engineer. We have a daughter named Navya, who is five years old. Navya was diagnosed with autism when she was 2-and-a-half years old. Since then, our family has been on a journey of learning and growth. We have connected with other families who have children with autism and have found a supportive community. Navya has made progress in her development through therapy and early intervention programs. As a family, we have learned to be patient and understanding of her unique needs. We constantly celebrate every milestone she achieves, no matter how small it may seem to others. Being a stay-at-home mom has allowed me to be more involved in Navya’s care and progress. This has helped me learn so much about autism and how to best support my daughter. Also, it has given me the opportunity to pursue my interests, such as reading, which helps me recharge and stay positive. We are aware that there are challenges that come with having a child with autism, but our family is stronger and more resilient because of it. We are grateful for each other’s love and support, and we look forward to continuing our journey together.

Marcia and David: We are glad you found a supportive community. Can you tell our readers a bit more about this support and any observations you have made with respect to regional differences? 

Aboli: Currently, there are reputable organizations working hard in India to educate the public and provide therapies for people with autism. However, there is still a long way to go in terms of spreading awareness and understanding about it. In my community, there has been a recent growth in autism awareness, but the reach is very limited as of now. Compared to the rural areas, urban areas, like mine, have better access to information and hence there is relatively better awareness of autism. However, many people, even in the urban areas, still hold misconceptions about the condition, believing that it is a result of bad parenting or a lack of discipline. This can lead to discrimination and stigmatization of individuals with autism and also their parents. In the case of a non-verbal child, many parents wait until the child is 5 years old in hopes that they will start speaking then. If the child is autistic, they miss the opportunity to receive early intervention. Even now, people are concerned with raising their child to be “normal.” However, what is considered “normal” varies greatly from person to person and culture to culture. It’s important to recognize that every child is unique and may have different needs and abilities. Instead of striving for a specific standard of normalcy, parents should focus on fostering their child’s individual strengths and supporting them in areas where they may struggle.

It is important that we continue to raise awareness about autism, not just in urban areas but also in rural communities where access to information may be limited. We need to work towards creating a more inclusive society where individuals with autism are accepted and valued for who they are. This can be achieved through education and advocacy efforts, as well as by providing support services and resources for individuals with autism and their families. By working together, we can create a world where everyone has the opportunity to thrive, regardless of their abilities or differences. The more that people compare their children with others, the more problems they may encounter, especially given that children with autism are all different from one another. Due to the differences in their strengths and weaknesses, what works for one child may not work for another. It’s important to focus on their individual needs and abilities rather than constantly comparing them to others. Instead of trying to fit them into a mould, we should embrace their differences and work with them to develop their strengths. This means providing them with the necessary support and resources they need to thrive in their own way. It’s also important for parents and caregivers to educate themselves about autism and seek out professional guidance when needed. By doing so, we can create a more inclusive and accepting society where individuals with autism can reach their full potential.

Marcia and David: When was your daughter diagnosed, and what was the process like for you?

Aboli, her husband Sagar, and Navya

Aboli: When Navya was 2.5 years old, she received an autism diagnosis. Until the age of around 1.5 years, Navya had accomplished all of her developmental milestones. But after that I started noticing Navya wasn’t talking as much as she should be and she was banging her head a lot. This made me wonder if maybe she was having trouble speaking. In addition, Navya did not play with her toys in the manner that is typical for a young child; rather, she used to arrange them in lines. Even when Navya spoke, it was only rehearsing poems, alphabets, and numbers. I therefore discussed the possibility of Navya needing speech therapy with a psychologist friend of mine. After conducting a thorough evaluation, Navya was diagnosed with autism spectrum disorder. This explained why she acted in an unusual way and had communication problems. Despite the fact that my husband and sister were somewhat familiar with autism, I had never heard of it. Until then I was worried about my parenting skills which was hard on me as a new mother. But the diagnosis helped a little because now I know that there is a certain reason behind her behaviour and that it is not my fault as a parent, which was often hinted at by my peers or relatives. However, I also felt overwhelmed and unsure of what to do next. We immediately started researching and learning more about autism and how we could best support Navya. We learned that autism is a developmental disorder that affects behaviour, social interaction, and communication, and that early intervention is crucial, so we immediately began her therapies. We also learned about sensory processing issues that are common in children with autism, so we have been working with Navya to develop coping strategies that help her manage her sensory overload. Navya’s socialization and communication skills have significantly improved since she began therapy. During the course of our research, we learned about the challenges that families with autistic children face on a daily basis. We were inspired by the strength and resilience of these families and knew that we wanted to do everything we could to support Navya and others like her. With this newfound knowledge, we began to adjust our approach to parenting Navya and sought out resources in our community to help us better understand how to support her unique needs.

Marcia and David: Can you share a little bit about the resources you received?

Aboli: I have access to autism resources in India, including books, online support groups, and therapy facilities with a focus on supporting people with autism. There are organisations that offer parent-child training and workshops to help families better understand and navigate the challenges of autism. In addition, there are specialized educational institutions and programs that meet the special requirements of people with autism spectrum disorders. Despite the fact that the support is more easily accessible in urban areas, these resources aim to advance inclusivity and give autistic people the tools they need to thrive in society. These tools have been crucial in guiding me through the challenges of parenting an autistic child. Connecting with other parents who are going through comparable experiences has also proven to be very beneficial, in my opinion. I have been able to express my worries and get suggestions from people who have been in my situation through online support groups.

There are now government services available in India for children with autism, such as the creation of an UDID card that will benefit the children with autism and their families. The UDID card, or Unique Disability ID card, is a significant step towards inclusivity and support for individuals with autism spectrum disorder (ASD). This government initiative aims to streamline services and ensure that autistic children receive the necessary assistance they require. The UDID card provides access to various benefits such as healthcare services, educational support, vocational training, and employment opportunities tailored to their specific needs. It also facilitates easy identification and recognition of their disability, reducing any potential discrimination or misunderstanding they may face in society. With the introduction of the UDID card, the government is actively working towards creating an inclusive environment for autistic kids and their families. By recognizing their unique abilities and providing them with the necessary resources, India is taking significant strides towards empowering individuals with autism and fostering a more inclusive society for all.

However, there is still a long way to go because more education is needed and there are still misconceptions about it. I live in an urban area, but there are other urban areas where the services provided and awareness of autism are much better than where I live. In these areas, individuals with autism have access to specialized schools and therapy centers that cater to their specific needs. Additionally, there is a greater understanding and acceptance of autism within the community, leading to increased opportunities for social integration and employment. To bridge this gap, it is crucial for India to prioritize spreading awareness about autism across all regions. This can be achieved through comprehensive education campaigns that target not only parents and caregivers but also teachers, healthcare professionals, and the general public. By dispelling misconceptions and promoting a more inclusive mindset, society can become more supportive and accommodating towards individuals with autism. Furthermore, the government should allocate resources to establish more specialized schools and therapy centers in underserved areas. This would ensure that individuals with autism have equal access to quality education and therapeutic interventions regardless of their geographical location. Additionally, it is essential to train educators and healthcare professionals in evidence-based practices for supporting individuals with autism effectively. While it hasn’t always been easy, we are grateful for the opportunity to learn more about autism and how it has impacted our family’s journey.

Marcia and David: What led you to desire to work as an Extern with ASAT? What has your experience been like? 

Navya at age 4

Aboli: As I was researching about autism on the internet, I thought, “Why not work as a volunteer for an organisation that helps autistic people? Perhaps through that I might gain more knowledge.” So, I began my search for organisations, and luckily, I found ASAT. I immediately emailed them about such a possibility, and they told me about their Externship program where I could work while learning more about autism. Being able to work with people who are so knowledgeable about autism and obtain evidence-based information has been a huge benefit for me. As a part of my externship, I had the responsibility of reviewing and editing different kinds of written material, such as articles and reports. This experience allowed me to enhance my skills in proofreading and refining written content. Additionally, I gained valuable insights into the importance of maintaining consistency and clarity in the article. I was also a member of the Facebook monitoring group where I was responsible for monitoring and moderating content to ensure compliance with community guidelines. This experience further honed my attention to detail and ability to identify and address potential issues in written material. It provided me with a deeper understanding of the impact that effective communication can have on maintaining a positive online environment. I read ASAT and non-ASAT articles about therapies, and I added my perspective as a parent to the article in the reading log document. This allowed me to contribute and share my own experiences and insights with other parents who may be seeking similar information. More so, engaging with the ASAT community helped me expand my knowledge and stay up-to-date on the latest research and developments in evidence-based therapies for children. To reach a wider audience, I translated the ASAT website flyer into Marathi and the ASAT articles into Hindi. By translating the materials into different languages, I aimed to make the valuable information accessible to a larger population of parents who may not be fluent in English. This way, I hoped to empower more families with the knowledge and resources they need to support their children’s development effectively.

This Externship was an excellent experience because I was able to read evidence-based treatments and also connect with other autism parents who were very helpful, especially in distinguishing between the appropriate treatments for my daughter based on their knowledge. I learned about different strategies for communication, behaviour management, and addressing sensory challenges. The team at ASAT was incredibly supportive and provided me with valuable feedback throughout my time there. This Externship not only helped me develop my skills as a professional but also gave me a deeper understanding of the challenges faced by individuals with autism and their families. I am grateful for this experience and would highly recommend it to anyone interested.

Throughout the externship, you both have been a huge support. Working with you has been wonderful and you have pushed me to do better while providing me with a lot of support. This has given me more confidence in my work and has been extremely helpful overall. I have learned so much from them, not just about the work we do, but also about how to communicate effectively and work collaboratively. In addition, my fellow externs have also provided me with a lot of information which has only added to my learnings from this externship.

Marcia and David: Do you have any advice for other parents of children with autism, especially in your community? 

Aboli: Do not compare your autistic child with other kids. This is my advice to other parents of autistic kids. Every child is special in his or her own wonderful way. Let your child be free to be themselves and embrace their unique qualities. Instead of focusing on what they can’t do, celebrate their accomplishments and encourage them to explore their interests. I think it is important for parents or caregivers to remember that every child develops at their own pace and in their own way. By accepting the child for who they are, we can help them build confidence and self-esteem which will position them better for learning. Also, for parents, I would say do not be hard on yourself and also make sure you enjoy the journey or you will be losing out on a truly magical experience with your child.

Marcia and David: That is such good advice. We have truly benefited from the incredible work you’ve done for us here at ASAT. Your description of your journey and your advice for our readers is inspiring. Thank you for taking the time to interview with us and we look forward to your continued relationship with ASAT! We are extremely grateful to have you on our team!

Citation for this article:

Questel, M., & Celiberti, D. (2023). A mother’s reflections on diagnosis, advocacy, and action: An interview with Aboli Jadhav. Science in Autism Treatment, 20(9).

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