Within interviewees’ accounts, four broad areas of need, varying between individuals, were identified: l understanding and coming to terms with/accepting their autism diagnosis
l strategies and skills to support successfully managing everyday life and situations
l mental health or social needs (social needs= social care, employment, housing and welfare needs) presented at referral or identified/emerging during the time with the service
l emotional support to overcome or endure a period of difficulty.
Based on the evidence gathered in their interviews, we allocated interviewees to one of three groups in terms of the levels of unmet needs at discharge from the SAT (or, if still with the service,≈ 12 months after the first full assessment appointment):
1. Needs predominantly met. This group can be further distinguished:
i. lower levels of need at referral ii. higher levels of need at referral.
2. Met and unmet needs. This group can be further distinguished in terms of why some needs remained unmet:
i. service did not address the full range of presenting needs ii. some needs only partially met by discharge
iii. needs predominantly unmet.
Organising the sample in this way allowed us to investigate systematically whether or not, and how, features or characteristics of service delivery and practice affected service users’ accounts of the ways a SAT did or did not help them. This was one of the primary objectives of this element of the overall project, and we report our findings in Service characteristics: impacts on outcomes. First, however, we offer a broad description of these three groups and their experiences.
Needs predominantly met
Eight of our interviewees, across six SATs, reported their needs to be fully or predominantly met by the service. This included individuals not previously diagnosed and individuals already diagnosed with autism. Some individuals had very substantial and wide-ranging difficulties at the point of referral (e.g. homelessness, redundancy, depression and suicidal ideation) and described the considerable impacts that receiving support from a SAT had on their lives:
When I was diagnosed I was not far off being incapable of work and now I’m 6 months into a new job and coping incredibly well, despite massive upheaval and significant change. And I’m doing that at the
same time as trying to move house and coping with the rug being pulled out from under my identity in terms of my diagnosis. There is no universe in which I would be coping half as well if it wasn’t for the support I’ve received.
SU35, 33 years
I felt they went above and beyond, and I am truly grateful. I wanted to complete this interview to express that, as I can’t thank them enough.
SU22, 37 years
Others had sought referral to the SAT for a diagnostic assessment and did not identify themselves as having any additional support needs. In these instances, the diagnosis often enabled individuals to self-initiate any changes or resolve problems in their lives, and they had not required support from the SAT to achieve this:
The main thing I really wanted was the diagnosis for work. I had support that I needed from ex-wife and friends so I wasn’t really looking for any sort of ongoing support from the service.
SU18, 62 years
Met and unmet needs
Thirteen interviewees, across seven SATs, were allocated to the‘mixed experience’ group, with some of their needs remaining unmet or only partially addressed. Although half regarded themselves as still ‘in the service’, no interviewees were actively engaged when we interviewed them. Unmet or partially met needs were attributed to‘ineffective’ interventions and limitations of the SAT in terms of format, duration, intensity, scope and flexibility of the support available: we return to these issues in detail in Service characteristics: impacts on outcomes. Reports of refusing, not using or dropping out of the interventions/support offered were much more common in this group than in the‘needs met’ group. The cause of limitations to the support received was most frequently attributed to funding constraints within the NHS and participants expressing sympathy for SAT practitioners. Nevertheless, a number of people expressed disappointment at the help they received.
Needs predominantly unmet
Seven interviewees, across four SATs, were allocated to the unmet needs group. All reported that, aside from the diagnostic assessment, the support they had received had not helped. All had been discharged or had disengaged from the service. The unmet needs that were reported were wide ranging and, in some cases, quite significant or dehabilitating. They were consistently attributed to limitations in the support offered by the SAT and/or the support/interventions being delivered in a way that they could not access (e.g. group-delivered interventions). We return to these issues in detail in Service characteristics: impacts on outcomes.
Some presented the experience of being discharged and/or being offered intervention/support as inadequate or inaccessible, with language that indicated a sense of rejection and a perceived lack of compassion on the part of the service; for example,‘thrown out’ (SU8) and ‘ticked off [waiting list]’ (SU17), as well as:
The service is like, is almost like detached, it’s like doesn’t even wanna try and help. . . . I feel like I’m not getting across, like I can’t get across how bad it is kinda thing.
SU47, 20 years
Another common theme in this group’s accounts was a frustration that needs had been articulated or identified during assessment, but not then addressed:
It felt like there was a disconnect between the person doing the diagnostics and the follow-up. Identifying an issue is isn’t the same as providing solutions or help with the issue.
A noteworthy difference in experience between the‘unmet needs’ group and the ‘needs met’ and ‘mixed experience’ groups was that the ‘unmet needs’ group were more likely to describe waiting times for the diagnostic assessment as being problematic, with some having waited> 2 years. It is possible that these waiting times increased the severity of personal difficulties or the hope vested in how the SAT would impact their lives, which, in turn, heightened or coloured their emotional response to their experiences of using a SAT. Despite this sense of frustration and disappointment, as with the‘mixed experience’ group, interviewees also referred to the high level of demand for services and lack of funding as an explanation as to why they had received so little support.