Leandra
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Leandra is in her 20s. She is autistic and has an undiagnosed neurological disorder.
Leandra’s first seizure happened about eight years ago and became progressively worse.
‘I couldn't continue attending school. I was having 25 seizures a day with it all.’
Once after being admitted to hospital, a doctor put her in an induced coma.
‘And under his care, I endured a lot of malpractice … I had two spinal taps that were unconsented. That was in ICU. Then I got moved across into the neurology ward, which is a very traumatic place. Instead of being comforted and consoled, I was strapped to the bed at one point because the hallucinations from the medication I was under were so severe.’
Leandra was in hospital for about a week.
‘I just wanted to go home. It just really messed with my head at the time.’
The radiologist told Leandra if she had a seizure, she could leave.
‘In my stupid teenage brain, I faked a seizure. I felt very bad about that.’
The doctor told her she’d wasted his time.
‘He said to me that I'd be lucky to have anyone give me support. He didn't give me a diagnosis. He put down on my medical records I have pseudo seizures, which made a lot of complications in the future at emergencies.’
Since then, Leandra said she has faced ‘a lack of care and support’.
‘I was presenting in hospital regularly. No-one wants to help me … This stuff seems to be lingering heavily wherever I go. With that and the lack of treatment, it’s very hard to have a stable independent lifestyle … Because there's no diagnosis, I can't access DSP or any assistance.’
Meanwhile, she said the treatment from health carers is confusing.
‘Even though they tell me I don't have epilepsy or seizures, they still want to put me on anticonvulsants.’
Leandra gets very ‘emotionally upset’ during the ongoing medical assessments.
‘I've been working very hard to get a diagnosis. All the assessments I've had, they’ve turned around and gone, "Well, yeah, you need therapy for dealing with the fact that you have a disability." But therapy is not going to solve these seizures … “Can I have some support? Can I at least have a diagnosis? Can I have a seizure plan?”’
Leandra is hoping a new autism diagnosis might help her qualify for NDIS supports.
‘I got diagnosed as a child through the schooling system. But my dad, who I have no interaction with anymore, didn't want, in his words, "a retarded child". And he didn't want it labelled, so it got put aside.’
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.