Perspectives of Parents of teenagers in a community learning space

This section explores the perspectives of four sets of parents whose teenage children are on the autism spectrum, all participating in a community learning space. We outline each child's profile, including their diagnosis age and communication methods, before discussing the parents' experiences with early signs and diagnosis. We further detail their initial emotional responses, the early intervention choices they made, and where they initially sourced information about autism. Finally, we cover their transition from early intervention, their current approaches to managing family life, their hopes and apprehensions for the future, and the advice they offer to newly diagnosed parents. This article is based on in-person interviews conducted in June/July 2024.

All the four sets of parents and children are part of a community learning space, some full time and some part time, where they work together in groups, with other mothers and children on the spectrum. They have help from experts in behavior intervention and teaching learning processes.

Profiles

S-Ish S is trained as a doctor and a dancer. Her 12 year old son Ish is interested in food and shows interest in doing academic work. He works at 3rd grade level now. He is verbal, and can ask for what he wants. He has a routine of dancing, exercise and regular physical and cognitive engagement. Ish was diagnosed at 3 and went through systematic early intervention till 9 before entering a community learning space.

H-M H is a microbiologist and a teacher. Her 13 year old son M is partially verbal and uses AVAZ to communicate. H trained as a therapist for 3 years along with M while he took his early intervention and continues to work as an expert mentor. M was diagnosed when he was 3 years old, went through systematic early intervention, and joined a community learning space. While he is independent with his daily living, he needs someone to be constantly with him to take care of his safety around the kitchen and on the roads. M enjoys nature.

S-S S is a housewife married to a doctor and are parents of 3 sons. The oldest being 14 years old, the second, S being 11 years old and on the spectrum and the youngest, 4 years old. S was 2 when he was diagnosed. They stayed in the US until the youngest son’s birth and till they could find stable help for S back in India. S is verbal and can communicate his likes and dislikes. He often does so with Disney characters. S knows disney movie lines by heart.

S-G S is a nurse, lecturer and a teacher. Her son, G is close to 13 years old and is partially verbal. He was diagnosed when he was 1 year 7 months. He went through special education early intervention along with speech and occupational therapy. He started Applied Behavior Analysis (ABA) Therapy when he was 6 years old, has been using AVAZ since he was 6.5 years old and can now communicate anything that he wants through the app. S has undergone parent training and also trained to be a Registered Behavior Technician (RBT) while G was taking ABA therapy. They are now a part of a homeschooling group where the parent and child participate in the teaching learning process under the guidance of experts. G loves listening to music.