Eugenie and Patrice

‘There is literally nowhere to go when you have got a child that has a disability and mental health problems. So everyone tells us how bad the [hospital] mental health department is. With disability, it is non-existent.’

Patrice is the mother of Eugenie, a teenager who’s autistic and non-verbal.

Patrice told the Royal Commission that doctors and teachers ‘severely underestimated’ Eugenie’s intelligence when she was younger.

‘Everyone that has worked with [Eugenie] has always told me that she is a lot brighter than what anyone gives her credit for and I think, unfortunately, that fuels also the self-harm because I think it fuels a lot of frustration.’

When she was young, Eugenie developed a medical condition that caused her a lot of pain. When she began to self-harm, Patrice took her to a children’s hospital where doctors saw only ‘bad behaviour’ and misdiagnosed her with a psychiatric condition.

‘I was horrified when I first discovered that the hospital system does not understand disability.’

Doctors prescribed psychiatric medication and Eugenie’s painful medical condition remained undiagnosed for years.

‘I would be better off if [Eugenie] could yell out, “I am in excruciating pain.” Someone would act on it. But for her to go up and hit herself … what the hospitals tend to look at is that this is behaviour.’

By the time the hospital found and treated her medical condition, Patrice said the self-harming was ‘impossible to completely stop’.

‘We have realised that too late. And now she has no quality of life at all.’

Patrice said the hospital now treats Eugenie for her injuries every few weeks and her family is struggling.

‘[Eugenie] doesn’t sleep. So my husband has three hours sleep. I’m lucky to have a husband. Look, if there wasn’t a second adult in the house I would have to relinquish her because I just can’t do it.’

Patrice said she’s also struggling to support Eugenie’s sister, who is also autistic.

‘She is just going to be traumatised, I think, because we have got someone who is screaming and crying all night … The toll on us is massive.’

Patrice said the hospital now often won’t admit Eugenie until she ‘bashes herself really badly’.

‘I cry before we have to go into hospital because it is so hard. It is such a fight.’

Eugenie is ‘very, very strong’ and needs her own room with two people to help her. Patrice and her husband often sleep on the floor beside her bed to help hospital staff cope.

Despite years of admissions, when Patrice recently admitted Eugenie to change her psychiatric medication, the hospital still treated her as if she was behaving badly. 

‘They are not understanding disability … We are constantly having to prove things and it is exhausting. It is really exhausting.’

Eugenie often needs sedating to receive medical treatment, but because it’s a restrictive practice some procedures just can’t be done.

‘If she needs blood taken there is no provisions for any sedation … And I am sort of saying, “No, no, no. The procedure needs to be done. You want bloods, she deserves to have bloods and, you know, we need to get the answers. Make it happen.” And they can’t and they don’t. So she just doesn’t get bloods taken.’

The NDIS supports Eugenie and funds two support workers during the day, but it’s difficult keeping workers and Patrice worries the NDIS will cut her funding.

‘Thank you for understanding the intensity of the situation,’ Patrice told the Royal Commission.

‘I think sometimes it is hard to have people understand, but it is extreme and ongoing. Yeah, I can’t sustain it. I have already got breast cancer last year and so, you know, it will be something else next year.’