Iva and Samara
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Recently, Iva had impacted and infected wisdom teeth and needed surgery. He was working long hours so he asked his mum, Samara, to organise the surgery for him.
When Samara spoke to the surgeon she told him Iva has autism and would need to ‘manage his anxiety around surgery’.
She explained long wait times increase Iva’s anxiety and the surgeon agreed to place him first on the operating list for the day. Then he mentioned he ‘didn’t usually give a local anaesthetic during surgery for people who were autistic as they were likely to chew their lip significantly’ while it was numb.
Samara told the Royal Commission she thought this was a strange comment and made it clear Iva would not chew his lip. She explained Iva is ‘what is called “high functioning”’ and a ‘diagnosis of autism does not mean that a person is intellectually impaired’.
The surgeon appeared to agree. But the surgeon had little understanding about autism.
On the day of surgery Iva was told he would be second on the list because another person needed to be first.
The first surgery was lengthy and Iva ‘was getting more and more anxious’. Both Samara, who identifies as autistic, and Iva were ‘finding it difficult to have the multiple conversations with various people, in the enclosed small room, all of us wearing masks and gowns without identifying photos or name labels’.
Just before the operation the surgeon said, ‘so he’s not having a local’. Samara thought he meant instead of a general anaesthetic and replied, ‘he’s having a general’.
‘In retrospect it would have saved a whole lot of grief if the surgeon had said, “So he will be having a general anaesthetic, without the local.” But that was not what was said. And my son and I misunderstood what was meant.’
After waking from surgery, Iva ‘was in extreme pain’ and distressed. The nurse assumed Iva had been given a local anaesthetic and his mouth would be numb.
It took almost 40 minutes for Iva to receive any pain medication.
Prior to discharge the surgeon casually mentioned Iva ‘hadn’t had a local so it would be sore’.
Samara snapped, saying, ‘[Iva] was supposed to have a local as well as the general anaesthetic.’
Later that day she contacted the hospital CEO.
‘Frustrated, I said that we are not a litigious family out to sue and that I just want them to know a mistake had been made.’
The CEO and surgeon both said ‘the same medical decisions would have been made regardless’ of Iva’s disability. But Samara discovered that ‘99 per cent of people have the local AND the general’ anaesthetic.
The surgeon suggested if Samara had told him Iva had Asperger’s syndrome instead of autism he would have given him a local anaesthetic.
‘How can it be justifiable to withhold the local anaesthetic from anyone at all, whether autistic or not, or intellectually impaired or not? Surely some other management practice can occur’ to prevent patients biting their lips?’
Samara doesn’t want this to happen to anyone else and suggests anaesthetic and pain relief options are clearly explained and included on consent forms.
‘It would be nice to think that our nation might one day understand what the terms used to describe / label disabilities actually mean. There’s a long way to go if what happened to us can happen in a medical setting.’
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.