Parent describes repeated barriers to pain care, therapies and AAC for her nonspeaking autistic son

At a World Autism Awareness Day panel, Gayatri Vasan of Bangalore described her family’s struggle to obtain consistent medical care, effective therapies and communication supports for her nonspeaking autistic son, whom she said became nonverbal after a surgical anesthesia event. She urged medical and education professionals to take parent observations seriously and to prioritize basic communication access and pain management rather than assuming behaviors are “just autism.”

Vasan recounted that initial diagnostic pathways left her and her husband “completely at sea” and that subsequent clinical encounters often dismissed physical complaints as autism-related behaviour rather than investigating possible physiological causes. She described episodes of severe pain and self-injury and said clinicians sometimes recommended psychiatric admission rather than targeted medical or dental evaluation. “Please take them seriously,” she told the session.

Why it matters: the parent testimony highlighted gaps between diagnostic labels and individualized assessment. Vasan described how clinicians’ and therapists’ assumptions about autism sometimes precluded routine medical workups (for dental pain, migraines or gastrointestinal issues) and how that can leave families isolated and children untreated.

Communication and AAC: Vasan said attempts to teach basic AAC tools and other communication strategies had limited success for her son to date and that she still struggles to find practitioners who can teach and generalize AAC for nonverbal children with complex support needs. She urged professionals to view parents as primary informants and to work with families to identify and train devices or boards that allow even basic expressions — for example, indicating pain or hunger — across contexts.

Treatment and medication concerns: Vasan described pronounced sensitivity and strong adverse reactions in her son to some sedatives and psychiatric medications and said that medications sometimes disrupted his balance, eating and mood. She said she has resisted some medications that felt inappropriate and appealed for clinicians to engage with family observations about side effects and responses.

Bottom line: Vasan’s account underscores the practical consequences of systems that default to behavioral or psychiatric explanations without first ruling out treatable medical causes, and it highlights the need for accessible AAC training, pain-management protocols and clinician-family partnership when working with nonspeaking autistic children.