Sam
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.
Sam told the Royal Commission they have multiple disabilities, including autism, depression, anxiety and functional neurological disorder (FND). These disabilities affect their life in many ways. Sam said they have ‘constant low mood and chronic suicidal thoughts’, problems communicating, making decisions and interacting with others.
Sam said medical professionals often misdiagnose them or they have diagnoses missed due to diagnostic overshadowing – where physical symptoms are misattributed to psychosocial symptoms. In addition they are ‘talked down to and ignored’ and have been refused treatment because of their autism.
One time they were told ‘I was only hallucinating because of my autism’ and they were discharged from the public mental health service.
Another time Sam was an inpatient in hospital. As soon as the medical professionals saw them using a cane Sam said ‘that was all they focused on, despite me being there due to depression.’ They told us the psychiatrist said there was nothing wrong with them other than FND, and ‘my depression was just in my mind’. The psychiatrist threatened to discharge Sam telling them they were not a suicide risk – Sam disagreed.
That night in the hospital room, Sam said, ‘I was about to attempt it but was interrupted by a nurse’. The next day Sam was discharged without being treated and told to ‘find (and pay for) a private autism specialist’.
Before being diagnosed with FND, Sam said they ‘couldn’t walk as far or as fast as my grandmother, and was in constant agony’. Sam was told ‘not to get a mobility aid because “I would look disabled”’.
Sam would like to see ‘massive changes in how doctors and other people in the medical profession view disability’ and said they should be ‘made aware of and trained on avoiding diagnostic overshadowing’.
Some of the doctors Sam spoke to were completely unaware of the existence of overshadowing. ‘Often I know more about my conditions than the person treating me, making it even more frustrating when I am talked down to.’
Sam said they believe doctors are more likely to ‘dismiss physical issues when someone has co-morbid issues’ resulting in ‘near complete lack of care’. Sam would also like to see mental health services made accessible for autistic people. ‘We simply need the same quality of medical care as our non-disabled peers.’
Ultimately Sam hopes ‘no-one’s life will be left to chance by medical or mental health professionals. I hope that one day we, and our lives, will be valued as much as those of people without disabilities.’
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.