- freely available
Int. J. Environ. Res. Public Health 2016, 13(7), 716; https://doi.org/10.3390/ijerph13070716
2.1.1. Survey Participants
2.1.2. Interview Participants
- Five adults with autism (three men and two women) aged 18+ years of age;
- 14 parents/caregivers (including two couples); the son(s)/daughter(s) of five of these parents were teenagers or young adults with autism; the son(s)/daughter(s) of the other nine parents were younger;
- 12 education professionals; three of the education professionals were parents of son(s)/daughter(s) with autism, while nine of the education professionals did not have a child of their own with autism.
2.2. Research Instruments
- Level /Tier 1 equates to brief autism awareness sessions, usually lasting no more than 1–2 h aimed at general autism service providers and other frontline staff.
- Level/Tier 2 usually takes the form of a half-day seminar aimed at staff who work directly with a child or adult with autism.
- Level/Tier 3 commonly takes 1–2 days and is aimed at building on existing knowledge for staff who are taking a lead in autism service provision.
2.2.1. Professional Online Surveys
2.2.2. Semi-Structured Interviews
2.3. Research Procedures
2.3.1. Professional Online Survey
2.3.2. Semi-Structured Interviews
2.4. Data Analysis
2.5. Ethics Statement
3.1. Professional Autism Knowledge and Training
‘My mum and dad would have been good [for support], but my mum has recently been diagnosed with Alzheimer’s, and my dad, he goes into hospital every second week for treatment…so really, we don’t leave the kids with them at all now. And my sister, she’s got fibromyalgia. Her younger son, he’s got Asperger’s and the younger daughter, she’s not diagnosed but we’re pretty certain she’s got autism as well. She’s got enough going on in her house [without helping us].’(Adult A’s wife)
‘Yes, at times I’ve had to tell [wife] to just leave him alone. I’m like ‘Just leave him’ …and you just wait until he calms down, and tell him what he’s done wrong, he’s got to fix whatever he’s done…but at the same time, I probably don’t let him away with as much as [wife] will.’(Adult A)
‘I feel training and updates should be mandatory as we encounter people with autism frequently as service users and some colleagues.’(HSC participant)
‘I think it should be included in basic nursing training. We are not always made aware when referrals are put through that there has been a diagnosis of autism and training would assist us to recognise it.’(HSC professional)
‘Better training for staff working in mental health services on working with people with autism. This is important as Asperger’s Syndrome now falls within mental health services, whereas previously this came under learning disability services.’(HSC professional)
3.2. Service User Views about Staff Training
‘I went and saw the GP [General Practitioner], and I said to the GP ‘I believe I’m autistic, because of [son]’s diagnosis, that I match up quite a bit to how he is, and stuff.’(Adult A)
’…so the GP was like ‘we’ll try and get you someone to see in the Psychology department’ and he says ‘but I daren’t put autism down because they might just simply say “Oh, we don’t diagnose for that”, and you wouldn’t get seen for any trouble’, so it took a long time for that…(Adult A)
‘The GP wrote off…but suggested that because I was married and had a job there was ‘No hope [of a diagnosis]’…I took an ADOS8 test, and an IQ test. They said ‘no’…I took the whole day off work to attend [HSC clinic]. [HSC diagnostician] said, if I had Asperger’s I wouldn’t have done that, but I was so anxious…’(Adult D)
‘The autism service in [education authority] wouldn’t talk to the parent or the child, only to the school. Teachers at school just don’t understand…Girls have a different profile, so you have autism, and Asperger’s, and Asperger girls etc…The multidisciplinary teamwere failing to protect my child.’(Parent of teenage daughter with autism)
‘Yes, we suspected from about 15 to 18 months that [name] had autism. It took us quite a while to get her on to the waiting list to be diagnosed, so we actually took her privately ourselves…[t]hen we got her on to the waiting list to be diagnosed’(Parent of preschool daughter with autism)
‘Initially I didn’t sort of go seeking diagnosis immediately…it probably wouldn’t be from the point of view of seeking further services or intervention.’(Adult B)
‘Yes, I still have my therapist…she has been with me for maybe 2 or 3 years…and she can keep an eye, she can support me.’(Adult C)
‘I think there probably is a significant unmet demand, including among people who have a much greater need for services or support than I would.’(Adult B)
‘…there’s a thing they should do, get autism dentists!…Our dentist said ‘I cannot deal with that’ and referred us to this private dentist, and we thought it would be a couple of hundred pounds…£600 I think he charged us, for fillings and X-rays, he gave him like a whole work-up once he got us in there.’(Parent of two young adults with autism)
‘I’ve heard tell there are such things as disability social workers, I think they’re as rare as hen’s teeth, I think that would probably be of benefit.’(Adult A’s wife)
‘…there’s a cut-off age, she would no longer be his social worker, once he reached 16, but I don’t remember seeing [name] the last year, it might even have been [since he was] 14, or 12…because when he got to a certain age, she no longer was his social worker, because he didn’t fit the criteria.’(Parent of adult daughter with autism)
‘The contrast between what happens pre-19 and post-19 is a total disgrace, total disgrace… Shocking- the money just stops, and everything stops and [son] had severe mental health problems from when he knew he had to leave school…and then everything else dried up, all the money for his social life, everything.’(Parent of adult son with autism and severe learning disabilities)
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|Professional||Total Who Received Training 1||Level 1||Level 2||Level 3|
|Private sector staff 2||30%||-||-||-|
|HE/FE staff 2||25%||12%||5%||-|
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