Zain and Toni
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Zain is autistic. He recently had dental surgery in hospital. His mother Toni told the Royal Commission her son, who is pre-teen, was traumatised by ‘the anaesthetic part of the procedure’. She said the anaesthetist set expectations that changed on the day of surgery. For an autistic person with ‘high sensory issues’ who needs ‘a plan’, this was distressing.
Zain is particularly anxious about needles and ‘the unknown’. At the pre-surgical clinic, initially, the anaesthetist used words like ‘magic rocket and magic fairy dust’ to explain the procedure. Toni told her ‘she was confusing him’ and he needed ‘the proper formal words’. The anaesthetist told Zain he wouldn’t feel the needle because they would rub a numbing cream on his arm. She also assured him Toni would be in the operating theatre with him.
In the week leading up to the surgery, Toni regularly repeated these assurances to prepare Zain for surgery.
On the day of surgery, one of the anaesthetists rubbed the cream on Zain’s arm then began to apply a bandage. Zain wasn’t expecting this. He doesn’t like bandages being removed and became upset. Toni asked if she could hold the bandage in place. The anaesthetist said they were ‘different bandages’ and Zain wouldn’t feel anything. However he did feel the bandage ‘being lifted’, and started crying.
The anaesthetist then made several attempts to insert the needle but couldn’t find a suitable vein. ‘I have never seen his face contort like that in pain and his tears flowed with the pain of it all.’
Toni told Zain he was being a brave boy and asked if there was an alternative to the needle. The senior anaesthetist introduced herself and mentioned there was a drink that had a similar effect. But it needed to be given 45 minutes before the operation and they would need to reschedule the procedure. Zain didn’t want to do that. Toni asked the senior anaesthetist to ‘give it one more try and then stop’.
The senior anaesthetist inserted the needle and found the vein the first time. Toni couldn’t understand why she hadn’t done this at the beginning considering Zain was already upset and they knew he was autistic.
‘I was comforting him and telling him the hard part was over now when the head anaesthetist told them to undo my gown.’ Toni wasn’t allowed in the operating theatre.
‘This was a huge change in the plan, and we were not given an explanation for the change.’
Zain was very upset after the operation. He told Toni, ‘I couldn't breathe when they put the mask on my face – I told them, but they did not listen to me. I couldn't breathe mum. Where were you?’
Toni wants a greater awareness of the needs of autistic children. ‘I believe there may be a gap between autism and the anaesthetic area for surgery – especially pre-surgical clinics.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.