Appendix 1.
Examples of carer and service provider comments.
| Theme Discussion point |
Comments |
|---|---|
| Perspectives on autism | |
| Acceptance of differences as characteristics of the individual | ‘In the Koorie community anyone who is different is cherished. They don’t need a label – they are cherished anyway’ (Higgins & Beecher, 2010, p. 27) ‘This is how he is – we love him for how he is’ (Higgins & Beecher, 2010, p. 36) |
| Distrust of medical labels | ‘It’s about white people doing the labelling and with this are issues of power. This labelling is on top of all the other labels being given to Aboriginal folk’ (Higgins & Beecher, 2010, p. 35) |
| Role of community | ‘The kids call out to him in town – and it makes my other kids know that he is accepted’ (Higgins & Beecher, 2010, p. 27) ‘I felt very abandoned by friends in the beginning – either that or I alienated myself from them’ (Higgins & Beecher, 2010, p. 28) ‘All the while I was dodging judgemental stares and comments from community members on a daily basis’ (Positive Partnerships, 2018, p. 16) ‘Our community includes our son in everything and he learns traditional dance, stories from our elders and soon we will begin teaching him language’ (Positive Partnerships, 2018, p. 8) |
| Barriers to diagnosis and support services | |
| Community awareness and understanding of disability | ‘It was months after she was diagnosed that I found out how serious this was’ (DiGiacomo et al., 2013, p. 5) ‘I talk to family about [child] being different and still need to explain that he is not being naughty if it seems he is not listening’ (Positive Partnerships, 2018, p. 17) ‘And being Aboriginal as well, you kind of think, oh look, they’ll pick up soon enough . . . you’ve got your elder saying to you, No, they’re right. They’re right. Don’t worry about it. They’ll pick up in their own time’ (Green et al., 2018, p. 1926) ‘So if there’s a speech issue they might just say oh, so and so did that at three years old and now they’re talking fine too’ (Green, 2018, p. 92) ‘I was amazed that a couple with a 13 year-old-child with a disability had never received a service from anyone. They didn’t know we existed, they didn’t know other services existed’ (McDonald & Zetlin, 2004, p. 119) |
| Lack of information | ‘Carers have to do the hard yards to get support’ (DiGiacomo et al., 2013, p. 6) ‘We knew something was wrong, it’s just getting the right people to listen’ (Higgins & Beecher, 2010, p. 29) |
| Pathway complexity | ‘It shouldn’t be this hard’ (DiGiacomo et al., 2013, p. 6) ‘I’m a health professional, even for me sometimes when I’m thinking, oh, where do I go about particular things, so there’s so many different services but how do you know which service you need for your child? . . .’ (Green, 2018, p. 95) ‘Because, um, it’s hard for families to have 20 service providers asking them the same questions over and over. Um, and, you know, it frustrates them’ (Green, 2018, p. 97) |
| Insufficient funding | ‘They’re under-resourced as well and that is all we can do’ (McDonald & Zetlin, 2004, p. 120) |
| Labour force exit | ‘Well I was working. But I have stopped . . . Yeah, the amount of time that I have off. It was my decision, it’s the school, a handful of weeks like every day’ (DiGiacomo et al., 2017, p. 5) |
| Parental well-being | ‘And then, yeah, when she got diagnosed with it – it’s hard . . . I stress a lot, I cry a lot’ (DiGiacomo et al., 2017, p. 6) ‘It’s become very stressful, yeah. At the doctor’s today, before I was going to the hospital, I am on edge and I am, like, fighting doesn’t get it done, but I can’t just sit back and agree anymore and say, yeah don’t worry, you know it’s okay. We will see’ (DiGiacomo et al., 2017, p. 6) |
| Gearing towards Western culture | ‘I know all of the neighbourhood centres in this whole region, and I have lived here for 12 years, so I know every single CDO [Community Development Officer] and every single community centre in the region and I know that they don’t provide services to people from ethnic backgrounds’. (McDonald & Zetlin, 2004, p. 119) |
| Overly clinical/medical approach | ‘People just couldn’t be themselves; they just wanted to talk about stuff and a lot of the stuff they talked about, a lot of it’s around spiritual stuff. You know, it’s not just like spiritual as in religion. You know, like spiritual as in cultural stuff. And the people they talked to just didn’t understand that. It’s still very much clinical, very clinical’ (McDonald & Zetlin, 2004, p. 120) |
| Community priorities | ‘If [a program’s] not the priority at that time for that community or those families it’s not going to happen . . . we were working on school readiness but we couldn’t get to work with the families on school readiness straight away because their biggest issue was they were actually going to be evicted and they had no money for food . . .’ (Green, 2018, p. 110) |
| Waiting lists | ‘I understand there is kids that are a lot worse than [child]. I do understand that. It’s just, with this waiting list, he’d probably be able to speak by then, he wouldn’t even need it . . . And then I got upset, and I said to my mum, it’s like no-one’s out there that wants to help’ (Green et al., 2016, p. 5) ‘Well, I mean, the current, ah – how to say it – the problem with the public system is long waiting lists. So currently speech pathology at the [Community Health Centre] has a two-year waiting list. So, ah, there’s clearly a problem for those who believe in the importance of early intervention’ (Green, 2018, p. 93) |
| Service provider obligations | ‘I mean generally I’d say that a lot of the difficulties we’ve had with Aboriginal children too is around perhaps child protection for a lot of families because that child protection may get involved and then there’s a whole new aspect of the service provision . . . we try and make sure families realise from day one that we get involved that we’re mandatory reporters. That’s part of the general script that we talk to families about, so it’s no surprise and we do tell families if we’re going to do it’ (Green, 2018, p. 116) |
| Influence of racism | ‘A European child with autism would be accepted more than what a little Aboriginal child would be’ (Higgins & Beecher, 2010, p. 33) ‘Because I’m Aboriginal, like, it’s harder to get things done because half the time . . . doctors, hospitals, like, they look down on me, like because of my colour, yeah, the colour of my skin and, like, they talk to me like I don’t know nothing . . . they just talk to me in a rude tone and, like, they, like, give me attitude’ (Green et al., 2018, p. 1926) |
| Rushed consultations | ‘I had [child] to another paediatrician before we started here [ACCHO] with him, and I wasn’t impressed . . . he just looked at her and he said, I think I will medicate her. He didn’t explain anything to me . . . I just went away and I thought well that’s not good enough, you haven’t really asked me anything’ (Green et al., 2018, p. 1927) |
| Service providers’ disregard for Indigenous culture | ‘There is no allowances whatsoever, they just feel that because you’re Australian, we’ve got to be the same as any other Aussie person. Well, it’s not. We’re Indigenous. We’ve got our beliefs and everything, and people don’t understand that’ (Green et al., 2018, p. 1927) |
| Perceived disrespect | ‘They don’t respect me, in a way, like with the kids. Well, mostly with her [child with disability]. I have got one doctor that is really rude and everything . . . The way they talk, and just the actions . . . Well, when they go to check her over . . . just mostly they are thinking that, in my eyes, that I am a bad parent’ (Green et al., 2018, p. 1926) |
| Service provider interaction style | ‘I’m a therapist, I’m probably a lot better at it now than I used to be, but, you know, talking in plain English instead of jargon, therapists quite like the jargon, but I think also teachers can do the same and not speaking in a language that’s understandable for people’ (Green, 2018, p. 112) |
| Disclosure of disability status | ‘This is the thing which keeps a lot of these older folk and disabled folk isolated. They really didn’t want to go out because it was too hard to go and do the shopping maybe. They were embarrassed over going into a store with a disability, that’s how it is’ (McDonald & Zetlin, 2004, p. 119) |
| Financial hardship | ‘The first two we stayed at work and tried to cope, and then with the bad behaviour and that it just got a bit too much. And yeah, so I only work two days a week now, and my husband doesn’t work, he had got a carer’s pension for the children’ (DiGiacomo et al., 2017, p. 5) ‘He was seeing another paediatrician and I just could not afford to send him when he needed to go because it was like a hundred and something dollars. I know that you get money back but its $100 that you have to fork out to pay for it up front’ (DiGiacomo et al., 2017, p. 5) ‘So yep, it doesn’t help a lot of the families that have the younger kids and that’s why – and I’ve always said that that’s why they don’t get seen to the right people because of the financial cost of that’ (Green et al., 2016, p. 7) ‘Costs me about a hundred and two dollars to fill up my car. And that means if I go to (hospital) more than four times a week I have to fill up again’. (Di Giacomo et al., 2017, p. 5) |
| Non-financial costs | ‘It’s tiring and especially when I work nights . . . It’s tiring to, um, drag the kids around and – yeah . . . I mean it is–it’s very tiring, emotionally and physically’ (DiGiacomo et al., 2017, p. 6) ‘So they wanted me, pick her up and then bring her here, drop her off. I said, no, no, no, no, it’s too complicated for me. Pick up the boys, you go to the school, oh no, we can’t do that’ (Green et al., 2016, p. 6) |
| Limited uptake of services | ‘I actually don’t understand why is it that we’re not seeing more Aboriginal families . . . we just seem to see so very few and I don’t quite understand why’ (Green, 2018, p. 99) |
| Geographical isolation | ‘I had a client [names small town some distance away] who was receiving Meals on Wheels, and they actually cut her Meals on Wheels because it was too much on their mileage budget. I mean, okay if it was too much on their mileage budget, alright! We can understand that because of the distance. But nobody saw another alternative for this lady, you know’ (McDonald & Zetlin, 2004, p. 120) |
| Inflexible government policies | ‘. . . the Carer’s Allowance loan was supposed to be coming up, and I wanted to pay the rest of it off to get another loan for [children’s hospital], because I have to pay for an overnight stay with her, and for one of these tests I have to pay for it. And they won’t be able to help me until the 27th of this month. And my appointment is on the 25th’ (Green et al., 2016, p. 7) |
| Strategies to improve access to diagnostic and support services | |
| Community education and training | ‘The community hadn’t had autism right directly in their face until (child) and when I educated them some said ‘oh that’s what was wrong with so and so 20 years ago – he didn’t talk’ (Higgins & Beecher, 2010, p. 26) |
| Building relationships with time and regular communication | ‘Families need to hear the information lots of times to reinforce what’s being said’ (Higgins & Beecher, 2010, p. 34) |
| Centralised team-based Aboriginal Community Controlled Health Organisations | ‘This is why I keep coming back here, because they were fantastic. Ah, um, not only do they help with [child], they help with housing, they help with me with my ex-husband, you know what I mean. Um, they help me with getting some counselling’ (Green et al., 2016, p. 7) |
| Support groups | ‘I think that that would be something that would be helpful for us to just be able to have some sort of connection to other families, in particular Aboriginal families . . . and whether the [Aboriginal health service] can, sort of, do that’ (Green et al., 2016, p. 5) |
| Supporting carers | ‘The most important thing that we can do for the Aboriginal community, um, for the whole community, um, of anyone who has a child with a learning need is to empower that parent – and to make that parent resilient’ (Green, 2018, p. 106) |
| Benefits of autism diagnosis | ‘An autism diagnosis at the age of 4 meant we finally had an answer and we started a journey that has changed our lives for the better’ (p. 6, Positive Partnerships, 2018) ‘The diagnosis opened up new opportunities for us to get real support, including speech pathology and special education’ (Positive Partnerships, 2018, p. 4) |
| Community engagement | ‘The strongest thing about Aboriginals is our support system. I don’t think we’d be able to cope without it’ (Higgins & Beecher, 2010, p. 31) ‘I want my community to connect with him because he doesn’t know how to connect with them’ (Higgins & Beecher, 2010, p. 31) |
Wherever possible, quotes relate to autism. Some quotes are drawn from studies which included individuals with a range of disabilities (e.g. studies by DiGiacomo et al. and Green et al. recruited from developmental clinics or focused predominately on people with developmental disabilities).