Ismael and Jiya

Ismael is in his middle years of primary school. He is autistic and has attention deficit hyperactivity disorder (ADHD). His mother, Jiya, is neurodivergent and also has ADHD. The disorder makes it hard for her to be organised and to manage the needs of her family. In particular, it is difficult for her to ensure Ismael’s needs at school are met.

‘I am always losing things and forgetting things. It doesn't matter how hard I try, I'm making careless mistakes multiple times a day. Which often means I have to do things over again … I struggle so much to follow conversations and I'm always overwhelmed. This makes advocating for my son incredibly difficult. I feel like I'm never doing a good enough job,’ she said.

Ismael suffers from extreme sensory challenges and anxiety. He struggles socially and has no friends although he ‘desperately’ wants them. His nervous system is in a constant state of dysregulation, and he experiences extreme fits of anger and rage multiple times a day.

Jiya told the Royal Commission that Ismael has been discriminated against since he started school.

‘He has been punished, excluded and shamed more times than I can count.’

As Jiya tries to get the correct supports for her son in place, she has found the school unhelpful and unsympathetic. Executive staff would not meet with Ismael’s psychologist or allow his OT to observe the class.

Jiya asked the school to put an individual education plan in place and to be consulted.

‘I was handed a "final" plan and told "this is not the draft, it's the final.” In the plan someone checked off that I had been consulted in making the plan ... which was clearly not true.’

Jiya gave Ismael’s teacher permission to call his paediatrician, but the teacher then asked the paediatrician to medicate Ismael – which Jiya had not agreed to.

Without the necessary supports, Ismael’s behaviour at school became extremely dysregulated.

‘I decided to keep Ismael at home until we could organise a meeting with the school to put new supports in place. This took five weeks to happen. So Ismael missed out more than half of the term.’

Jiya has depended on the skills of a neurodivergent educational consultant she hired to help manage the situation.

‘She knows and understands the exact supports Ismael needs at school. If it weren't for her, I would have had to pull him out permanently.’

However, for reasons Jiya doesn’t understand, the NDIA has told her Ismael’s NDIS funding cannot be used to pay the consultant. She plans to appeal the decision.

Jiya wants schools to stop using ‘abusive behaviourist approaches’ in the way they deal with students like her son.

‘I want teachers to be better supported and educated on how to support neurodivergent students … I want schools to provide truly inclusive education.’