Nalani, Samson and Mirelle

‘I’m finding it much harder to support the older children than the younger … Autism is an invisible disability … It slips through the cracks of services as adults.’

Mirelle has a number of children with disability. She wrote to the Royal Commission about her concerns for two of her older children, Samson and Nalani. Samson, in high school, has attention deficit hyperactivity disorder (ADHD) and autism (ASD). Nalani is 24 years old and has three children of her own. She has autism, intellectual disability and experiences anxiety and depression. Both Samson and Nalani are First Nations people.

Samson has trouble concentrating at school and understanding social norms, so he often ends up being sent to the office or suspended. In one instance, Samson was suspended because a teacher assumed Samson had bullied another child. The other child explained this never happened. The school phoned Mirelle and apologised to her, but they never apologised to Samson.

‘Even with the diagnosis,’ says Mirelle, ‘schools are often unsupportive and blame the child’.

‘My son has been suspended internally for silly things like making spit balls or running around a table or not sitting still (sent to office). This is despite evidence of sensory processing disorder, ASD and ADHD. He is still segregated and singled out, and if there is an incident he is blamed whether he was involved or not.’

Mirelle says the education system needs to be more supportive and inclusive. ‘Despite my son’s diagnosis he still gets reports that state “needs to choose to concentrate on his work”, “needs to limit distractions”. Like it’s a choice.’

Mirelle struggles the most in getting the right supports for her oldest child, Nalani, due to her complex needs. For example, Nalani can get mental health supports from a mental health service when she is in crisis and is suicidal, but cannot get non‑crisis supports from the same service because autism is not a ‘mental health’ condition. The university psychology clinic won’t see Nalani as she is ‘too complicated for students’. Non-government organisations won’t provide support on account of her combination of autism, mood disorder, and low cognition.

The lack of support has seen child protection become involved. Nalani’s three children have been placed with Mirelle until Nalani can get counselling or stabilise her moods. Unsurprisingly this has caused Nalani even more distress and Mirelle has been left with few options.

‘I can’t get any service to see her as she is “complex” and mental health won’t see her as “autism is not mental health”,’ Mirelle told us.

Mirelle can’t afford the cognitive assessments Centrelink requires before it will give disability payments, nor can she afford to pay for counselling.

‘Short of re-mortgaging my house to fund private psychology sessions, which I can’t do as I’m already working part time due to my demands of a carer (not only to my three children still at home, my adult daughter but now my grandchildren as well).’

Responding to the challenges Nalani faces as an adult is also made more difficult because of confidentiality and privacy issues.

‘When Nalani is in mental health crisis, professionals won’t talk to me because she’s an adult. And whilst I agree with her right to confidentiality, I am the one who picks up the pieces every time she goes down. We had her in the mental health ward due to suicide ideation and they released her without me knowing. It was only when my other daughter got a text Nalani was about to hang herself that I called and realised they’d released her two hours beforehand. Meanwhile I was looking after her children thinking she was safe in the hospital.’

Mirelle also suggested that some of Nalani’s experiences, with the police and in various health settings, may relate to her being a First Nations person with disability. For example, one day Nalani went into a police station to report the fact that she had been attacked. The police did not want to take her statement and only did so when, the following day, Mirelle went with Nalani to the police station and insisted.

On another occasion, Nalani’s baby boy was sick in hospital with a kidney infection. Nalani was with him in the hospital. Because of her autism, anxiety and the situation itself, Nalani was ‘very stressed’ and hiding under a blanket – she texted her mum that it was ‘doing her head in’.

The doctors’ response was to report Nalani as she was ‘not engaging with the baby’. ‘Luckily,’ Mirelle recounts, ‘they advised the paediatric nurse educator of their concerns, who just happened to be a family friend of ours’. The friend informed the doctors that Nalani has anxiety and autism.

‘Nalani came out from the blanket when she saw Aunty and began to talk. However impressions were that she was a young Indigenous mum that was neglecting her baby, rather than a woman struggling with anxiety herself.’

In short, Mirelle says there needs to be greater support for adults living with autism and accessible mental health services for complex cases ‘that don’t fit the acute model’.