3.40

Autism is distinct from intellectual disability though the disorders may be comorbid for some people (usually said to be 30-50 per cent).[1] The Committee was informed that little data or evidence is available about autistic youth in the ACT but Speaking Out for Autism Spectrum Disorder (SOfASD) commented that the ACT has low diagnosis rates and delayed Autism Spectrum Disorder (ASD) diagnoses.[2]

3.41

Over 3 per cent of Australian children aged 5-14 years are autistic (have an ASD diagnosis) but fewer than 0.5 per cent of adults over 30 years of age have been diagnosed.[3] The latest NDIS Quarterly Report shows that 1,950 of 7,260 NDIS participants (27 per cent) in the ACT are autistic.[4] In terms of mental health, SOfASD argues that ‘the ACT Government’s persistent underestimating of ASD numbers and service needs contribute to especially poor mental health outcomes for autistic youth in the Territory.’[5]

3.42

Professor Julian Trollor (head of the Department of Developmental Disability Neuropsychiatry within the School of Psychiatry at the University of NSW) gave evidence before the Disability Royal Commission, raising concerns that autistic people[6]

• are not being treated inside the health and mental health system and also not being addressed outside the health sector – autistic people just miss out everywhere on many of the services and supports they need;
• have a right to health services under Article 25 of the Convention on the Rights of Persons with Disabilities but that goal is not being met;
• have high mortality rates including suicide; and
• have high rates of undiagnosed, untreated and/or poorly managed illness.

3.43

The Australian Longitudinal Study of Adults with Autism (ALSAA) reported that between 25 and 84 per cent of autistic adults have a diagnosed mental health condition, with depression and anxiety the most reported conditions. Autistic adults have higher rates of suicide, increased mortality and reduced life expectancy.[7]

3.44

The Committee heard reports of autistic youth and their parents report being turned away from mental health services, such as CAMHS, because “we don’t treat people with autism”.[8]

Routinely, autistic youth who present with anxiety, trauma or depression are denied mental health services for those conditions because of their autism. In the past, CAMHS had a strong interest in autism but now the service excludes many, possibly all known, patients known to be autistic. Many autistic youths with mental illness have nowhere else to go to get the mental health services they need. It seems this is a staff decision rather than an actual policy. [9]

3.45

SOfASD is concerned that many mental health patients who are termed ‘treatment resistant’ or ‘unresponsive to treatment’ have undiagnosed ASD, and that clinicians try to treat their undiagnosed ASD with drugs which is known to not work instead of treating their mental illness. SOfASD argues that clinicians should be treating the patient’s comorbid mental illness, not their ASD and that this problem is ‘the result of chronic undertraining of mental health clinicians in relation to ASD.’[10]

3.46

The Committee heard that police in the ACT need training in how best to approach autistic people. According to SOfASD, the ACT has a Mental Health Crisis Team that does not attend mental health crises generally, and ‘certainly not when an autistic person is involved.’[11]

3.47

The ACT Government admitted that CYPS staff do not receive training specifically on the complexity of working with autistic children.[12]

3.48

The Committee was disappointed to hear accounts of autistic youth with mental health challenges in Canberra being refused support or receiving inappropriate treatment in the mental health system. The Committee highlights the urgent need for training of mental health professionals to effectively assist in the treatment of autistic youth suffering mental health challenges.

[1] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 31.

[2] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 8.

[3] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 1. The Committee is using identity-first language, that is ‘autistic person’ rather than ‘person with autism/ASD’, on advice from SOfASD that this is the stated preference of many autistic people.

[4] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 10. There is long-standing difference between SOfASD and ACT Government officials over ASD prevalence figures for the ACT.

[5] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 11.

[6] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 12.

[7] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 14.

[8] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 15.

[9] Speaking Out for Autism Spectrum Disorder, Submission 16, pp. 15 and 21.

[10] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 15.

[11] Speaking Out for Autism Spectrum Disorder, Submission 16, p. 24.

[12] See QON 17: Mental health and out of home care.