Understanding the caregiver burden of raising an Autistic child

Dr Nelson Loitongbam
Contd from previous issue
A 2023 report by “Autism Speaks” found that “56% of autism parents” reduce work hours or leave jobs entirely, resulting in an average “$18,000 annual income loss” per family.
4. Social and Relational Burden
A. Isolation and Stigma
"Friends stopped inviting us to parties because my son’s meltdowns made them uncomfortable. Now I barely leave the house." — Michael, father of a 9-year-old.  In 2021 ‘Autism’  journal a study found that  “70% of autism parents” feel socially isolated due to stigma (Sosnowy et al., 2021).
B. Marital Strain
"My husband and I argue constantly about therapies and finances. We love our son, but the stress is tearing us apart." -Sujata, mother of twins (one autistic). Research in ‘Family Relations’ (2020) shows that “divorce rates are 10% higher” in families with autistic children (Hartley et al., 2020).
5. Coping Strategies and Regional Resources for Caregivers
While the challenges are real, there are some ways to manage caregiver burden:
1. Seek Support – Join autism support groups, connect with other parents, and lean on family and friends.
2. Prioritize Self-Care – Taking breaks, exercising, and seeking therapy can prevent burnout.  
3. Access Resources – Look into Government assistance, nonprofit organizations, and respite care services.
4. Educate Others – Raising awareness about autism can reduce stigma and foster community support.
5. Plan for the Future – Financial planning and legal preparations (such as guardianship or special needs trusts) can provide long-term security.
In India organizations like-Action for Autism, Tamana Foundation Government Schemes and  Niramaya Health Insurance for autism therapies offer some succour.
The caregiver burden of raising an autistic child is profound and multidimensional, affecting emotional well-being, physical health, finances, and social relationships. While the challenges are significant, proactive strategies—such as seeking support, prioritizing self-care, and accessing  “regional resources” -can help mitigate these burdens.
"You are not alone," says Laxmi, a mother and autism advocate. "Finding a community of parents who understand made all the difference for me."
By sharing “personal stories, statistics, and resources”, we hope to foster greater awareness, reduce stigma, and empower caregivers to seek the help they deserve.

(All names are changed for confidentiality and ethical issues)

The writer is Honorary State Secretary Indian Psychiatric Society, Manipur State Branch