Submission 52 — Australian Autism Alliance (52.2 Supplementary to submission 52) — Select Committee on Autism | External submission

Results from consultation survey to inform a submission into the Federal

Senate Select Committee on

Autism

Prepared by ACU Engagement for the

Australian Autism Alliance

Prof Sandra Jones

Pro Vice-Chancellor (Engagement)

Our respondents

SACU

Who did we hear from? —

3,884 completed surveys:

769 autistic adults responding on behalf of themselves; and
3115 parents/carers responding on behalf of an autistic person they care for ¢ (including 257 autistic adults who are also parents/carers of autistic people and completed the survey in both contexts)

3 | | ACU Engagement | Vice President Portfolio

AUSTRALIAN CATHOLIC UNIVERSITY

Basic Demographics

Autistic Adults Parent/carer on behalf of autistic person

565 (73.5%) female * 2219 (71.2%) responding on behalf of a male
59.3% aged 25-44 ° 2737 (87.8%) responding on behalf of a person aged under 18 years.

87.1% born in Australia ¢ 95.1% born in Australia

91.7% do not speak another language at

home * 93.1% do not speak another language at home

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ACU

AUSTRALIAN CATHOLIC UNIVERSITY

Diagnosis

66.7% had a formal autism diagnosis and a

further 9.6% were in the process of getting a diagnosis

The majority were diagnosed as adults (77.2%)

77.0% reported waiting less than 12 months for a diagnosis

BUT 79.2% report that the diagnostic process was undertaken via the private system

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AUSTRALIAN CATHOLIC UNIVERSITY

Almost all parents/carers were responding on behalf of a person with a formal autism diagnosis (96.2%) or in the process of getting a diagnosis (2.6%)

75.2% reported waiting less than 12 months for a diagnosis

BUT 69.8% report that the diagnostic process was undertaken via the private system

Advantages of Diagnosis (top 5)

Autistic Adults

YACU

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic person

Helped me understand myself

Helped me understand my needs

Helped me deal with feelings of being different/inadequate

Helped me to explain my needs to others

Helped me find ways to improve my life/situation

7 | ACU Engagement | Vice President Portfolio

82.5

80.7

75.4

69.3

Allowed them to access support Helped them understand themself Helped me/them understand their needs

Helped them deal with feelings of being different/inadequate

Helped me/them find ways to improve their life/situation

49.6

45.2

40.4

39.1

Disadvantages of Diagnosis (top 5)

Autistic Adults

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic person

People making assumptions about me based on myths (e.g. autistic people are good at maths, have a special talent)

People assuming | am incompetent / incapable of things

Experiencing stigma and/or discrimination

Makes me concerned that my other health needs will be overlooked/overshadowed

Being labelled / defined solely in terms of my autism

8 | ACU Engagement | Vice President Portfolio

41.4

35.7

25.7

People making assumptions about them based on myths (e.g. autistic people are good at maths, have a special talent)

People assuming they are incompetent / incapable of things

Experiencing stigma and/or discrimination Being labelled / defined solely in terms of their autism

Makes me/them feel that | can’t change my situation/ have

less options

52.4

48.0

24.3

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

NDIS

263 (34%) had applied to the NDIS for support:

168 (63.9%) had received funding

42 (5.2%) were deemed ineligible

53 (6.6%) had an application pending

506 (66%) had not applied 168 (33.2%) thought they would not be eligible 115 (22.7%) did not think they needed support 80 (15.7%) needed information or support to apply

10 | ACU Engagement | Vice President Portfolio

AUSTRALIAN CATHOLIC UNIVERSITY

2711 (87%) had applied to the NDIS for support: 2475 (91.3%) had received funding 107 (3.9%) were deemed ineligible 129 (4.8%) had an application pending

404 (13%) had not applied 90 (22.3%) thought they would not be eligible 54 (13.4%) did not think they needed support 109 (26.9%) needed information or support to apply

YACU

AUSTRALIAN CATHOLIC UNIVERSITY

Autism knowledge of planner

Lo — eee eee (oo870 (n=670)

Good 18.1 31.8 OK 38.7 39.3 Poor 37.4 24.9 Unsure 5.8 3.7 Prefer not to say 0 0.3

11 | ACU Engagement | Vice President Portfolio

11 NDIA planning process was easy to understand? Autistic Adult (n=155) Parent/carer on behalf of autistic person (n=670) Agree 28.4 Disagree 61.3 57.5 Unsure 10.3 7.9 Prefer not to say 0 0.9

12 | ACU Engagement | Vice President Portfolio

# ACU

AUSTRALIAN CATHOLIC UNIVERSITY

Education:

Primary and Secondary

Only asked of parents/carers of school-aged children:

96.7% currently enrolled in primary or secondary school: 72.2% mainstream school 10.9% special school 9.0% dual school (mainstream and special) 3.3% home school 2.2% distance ed

14 | ACU Engagement | Vice President Portfolio

Disclosure and adjustments

99.0% had disclosed their child’s diagnosis to the school

Providing adjustments such as curriculum, assessment and exam conditions

Providing an education aide to meet the student’s needs

Establishing clear routines and avoiding changes

Making adjustments to sensory environment (noise, light, smell, textures)

Establishing support outside of the classroom (e.g. during recess / lunch times / excursions)

Identified a person/teacher at school for me to contact/exchange information about my child’s needs and progress at school.

Having robust and effective methods to deal with bullying

Providing information/education to other students on how to support/assist the student at school

Establishing a process by which they can leave the classroom without explanation if they need to take a break Providing professional development in autism for school leaders and educators

Providing regular parent, student, teacher communication and meetings

Providing autism accessible environments such as quiet rooms/spaces for students

Promoting mental health and well-being, such as support including buddying and mentoring for autistic students

15 | ACU Engagement | Vice President Portfolio

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

32.0 31.2 28.0 21.3 223} 35.1 10.3 8.3 19.1 12.4 28.7 23.8 9.6

AUSTRALIAN CATHOLIC UNIVERSITY

Education:

Post-secondary

Further education

Autistic Adults

29.1% (224) were enrolled in further study
33.5% a Bachelor degree
25.9% a post-graduate degree
17.9% a Certificate (I, Il, Ill or IV)
13.4% Advanced Diploma, Associate

Degree, Diploma

17 | ACU Engagement | Vice President Portfolio

SACU

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic person

29.1% (376) were enrolled in further study
31.9% a Bachelor degree
3.3% a post-graduate degree ¢ 40.7% a Certificate (I, Il, Ill or IV)
11.0% Advanced Diploma, Associate

Degree, Diploma

17 Autistic Adult Parent/carer on behalf of autistic adult

51.3% had disclosed their diagnosis to the * 84.6% had disclosed their diagnosis to the institution institution
33.0% had an adjustment (inclusion) plan * 59.3% had an adjustment (inclusion) plan
The most common adjustment was * More likely to report adjustments being made: adjustments to assessment/exam procedures * 42.9% adjustments to assessment/exam procedures (28.6%), with no other adjustment endorsed by oo more than 10%. * 27.5% providing a disability support person
19.8% providing a quiet room/area
19.8% establishing a process by which they can leave the classroom without explanation if they need to take a break

18 | ACU Engagement | Vice President Portfolio

# ACU

AUSTRALIAN CATHOLIC UNIVERSITY

Employment

Autistic Adults

411 (53.4%) currently held a paid job
40.4% full-time
32.8% part-time
24.6% casual
148 (19.2%) were on a disability support pension
Of those not in paid employment 59.4% would like to be employed

20 | ACU Engagement | Vice President Portfolio

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic adult

107 (28.4%) currently held a paid job
25.2% full-time
43.0% part-time
29.9% casual
199 (52.9%) were on a disability support pension
Of those not in paid employment 57.5% would like to be employed

Disclosure

Autistic Adult

Of the 705 currently or previously employed

214 (30.4%) had told their employer that they are autistic ¢ Most common reasons for non-disclosure:
concern that they would be judged negatively (59.4%)
Not confident that this will help (42.3%) ¢ don’t believe they will understand or that anything will change (41.3%)
- Don’t think | would be believed (fear of having

diagnosis/self-identification questioned) (41.1%)

concern that they would lose the job or have their hours reduced (30.6%)

21 | ACU Engagement | Vice President Portfolio

YACU

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic adult

Of the 192 currently or previously employed

114 (59.4%) had told their employer that they are autistic

¢ Most common reasons for non-disclosure:

concern that they would be judged negatively (54.7%)
Don’t want to be seen as different (45.3%)
concern that they would lose the job or have their hours reduced (32.1%)
Don’t want to identify as autistic (30.2%) 21

Adjustments (IF disclosed)

Autistic Adult Parent/carer of

(n=214) | autistic adult (n=114)

AUSTRALIAN CATHOLIC UNIVERSITY

Adjusted lighting and/or sound levels and/or other sensory (smells, textures) 8.4 53} Identified a person in the organisation to support you / them, if required. 13.1 27.2 Provided a quiet room/area 10.3 12.3 Provided information and/or training to others in the workplace on how to support you / them at work 5.6 14.9 Provided information and/or training to others in the workplace on how to support you / them at work 10.3 37.7 Provided a set work routine and avoided changes 25.7 26.3 Allowed you / them to work flexible hours 11.7 15.8 Changed the work flow/process while still achieving required outcomes 18.2 13.2 Changed the communication method to suit your / their preferred way of communicating (e.g. 30.4 24.6 providing written rather than verbal instructions)

Other (SPECIFY) 31.8 21.9

None (EXCLUSIVE) 8.4 5.3

22 | ACU Engagement | Vice President Portfolio

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

Housing and

Independence

23 Current housing situation Living with parents/guardians 17.5 72.1 Living with family/dependants 36.7 5.9 Living alone 11.8 3.5 Living alone with some assistance from a support worker 2.6 1.9 Sharing a home with friends 3.4 1.6 Sharing a home with other occupants (e.g. shared housing program) 9 3.7 Owning a home 27.9 2.7 Renting a home 26.4 2.7 Provided with housing funding assistance 1.0 0.3 Prefer not to say 1.1 0.3 Other 10.3 5.6

24 | ACU Engagement | Vice President Portfolio

Supports needed to live in preferred housing situation

Support in finding affordable housing options 20.4 Support in finding accessible housing options 10.0

Support in finding housing options where | am safe from violence, abuse, neglect 10.7

Assistance with personal care (showering, eating, dressing etc 7.2 Assistance with shopping 17.2 Assistance with budgeting and paying bills 19.8 Support finding others of my own choosing to live with 4.2 Support finding a place to live on my own 12.1 Assistance with home management — laundry, gardening, maintenance, etc. 35.2 Other (please specify) 6.9 None 2.0 Unsure 3.7

25 | ACU Engagement | Vice President Portfolio

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

28.5 39.1 29.3 42.6 60.1 32.4 36.7 60.9 i333)

0.5

AUSTRALIAN CATHOLIC UNIVERSITY

Ever been involved in the criminal justice system*

Autistic Adults Parent/carer on behalf of (n=769) autistic person (n=3115)

Yes 33.4 5.9 No 63.5 92.9 Unsure 1.3 0.7 Would rather not say 1.8 0.5

as a victim, witness or accused 27 | ACU Engagement | Vice President Portfolio

27 Knowledge and understanding of the police and/or = courts and/or prison about autism a

(n=257) autistic person (n=185)

Good 3.1 12.4 OK 9.3 24.9 Poor 65.4 55.7 Unsure 22.2 7.0

28 | ACU Engagement | Vice President Portfolio

Healthcare

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

29 Accessed the health system in the last 12 months GP / family doctor 96.5 95.0 Mental health practitioner (psychologist, psychiatrist, mental health support worker) 69.7 62.6 Dentist / dental hospital 48.8 59.6 Emergency department of a hospital 35.1 27.7 Complementary and alternative medicine practitioner (e.g. chiropractor, osteopath, kinesiologist) 26.4 14.5 Admitted to hospital 19.4 12.7 Did not visit/use any of these health professionals or health system 1.6 1.7

30 | ACU Engagement | Vice President Portfolio

Autism knowledge and understanding

Good 22.5 Ok 34.1 Poor 32.6 Unsure 10.8

Good

Poor

Unsure

31 | ACU Engagement | Vice President Portfolio

34.9 41.8 19.6

3.6

Good

Poor

Unsure

8.5 24.1 45.9 21.5

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

55.4 76.2 28.4 18.4 14.4 4.6 iL) 0.8

22.0 36.8 34.0

7.2

AUSTRALIAN CATHOLIC UNIVERSITY

Mental Health

Mental health concerns

Yes, diagnosed

Yes, but no diagnosis No

Unsure

Prefer not to say

33 | ACU Engagement | Vice President Portfolio

Autistic Adult

(n=769)

75.2

8.1 12.4 35) 0.9

YACU

AUSTRALIAN CATHOLIC UNIVERSITY

Parent/carer on behalf of autistic person

(n=3115) 38.1 13.8 40.5

6.8

0.7

33 Have been able to get appropriate support Autistic Adult (n=769) Parent/carer on behalf of autistic person (n=3115) Yes 57.3 56.6 No 29.1 31.7 Unsure 8.9 6.7 Haven’t tried to get support 3.6 4.4 Prefer not to say 1.1 0.6

34 | ACU Engagement | Vice President Portfolio

Usefulness in addressing mental health needs

Very useful Somewhat useful Not at all useful

Unsure

Very useful Somewhat useful Not at all useful

Unsure

35 | ACU Engagement | Vice President Portfolio

52.5 44.1 3.1 0.3

48.6 44.5 6.0

0.9

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

Very useful 62.9 65.4 Somewhat useful 32.9 29.7 Not at all useful 4.2 3.8 Unsure 0 1.1

54.8 66.8

37.8 27.7

6.9 4.1

0.5 1.5

AUSTRALIAN CATHOLIC UNIVERSITY

Social and ..

Recreational Activities

Receive support to access social and recreational activities

YACU

AUSTRALIAN CATHOLIC UNIVERSITY

(n=3115)

Yes, funded by NDIS 13.4 Yes, funded by another agency 0.3 Yes, but unfunded (e.g., family support) 8.3 No, but would like to 37.3 No, and don’t want/need to 40.7

37 | ACU Engagement | Vice President Portfolio

31.8

0.6

20.4

39.4

7.7

37 Feel socially isolated

Autistic Adult Parent/carer

(n=769) (n=3115) Strongly agree 32.9 36.2 Agree 34.6 37.2 Neither agree or disagree 16.6 13.5 Disagree 10.8 9.1 Strongly disagree 4.2 3.4 Unsure 0.9 0.6

38 | ACU Engagement | Vice President Portfolio

Advocacy

ACU

AUSTRALIAN CATHOLIC UNIVERSITY

39 Know where to get support ..if they are experiencing violence, abuse or neglect 57.0 38.9 51.1 ..if they are experiencing discrimination or exclusive practices — such as lack of 31.1 17.3 30.3 opportunities to access education, accommodation, recreation and leisure ..With the law, with tenancy, with Centrelink or with having enough money to 41.1 20.8 31.2 meet their needs

* or | know on their behalf

40 | ACU Engagement | Vice President Portfolio