Frontline managers’ experiences of practice leadership for when supporting autistic adults with complex support needs residing in community housing Free

Around one in every 100 adults in the UK are autistic (Department of Health, 2006), of whom approximately a quarter also have a learning disability (Autistica, 2023). Some autistic adults who have learning disabilities receive support with daily living from paid staff (National Autistic Society, 2023).

Staff support may be provided to people in group homes (residential care) but increasingly in single-occupancy ordinary community housing (supported living), the “right support in the right place” (Department of Health, 2012, p. 21). Staff typically provide support in multiple areas of an individual’s life, from personal care, domestic and leisure activities for example, to emotional and physical well-being (Department of Health, 2006). Autism is associated with an increased risk of behaviours described as challenging (Matson and Rivet, 2008; Edelson and Natowicz, 2021; McCarthy et al., 2010), meaning additional skilled support may be required. An alternative (to diagnostic) focus regarding behaviours described as challenging is to examine the influence of a range of environmental factors (including staff support) on their occurrence and maintenance, e.g. “capable environments” (McGill et al., 2020; Hume et al., 2021).

Good quality staff support is vital to the positive experiences of service-users (Allen, 1999; Department of Health, 2012). Poor quality staff practice is also observed, with examples of abusive practice regularly revealed, such as those at Winterbourne View and Whorlton Hall Hospitals (British Broadcasting Corporation, 2011, 2019), leading to new policy recommendations about how support is delivered and monitored (Department of Health, 2012; Bubb, 2016).

Managing staff to practice well in this context is associated with a particular style of frontline management called practice leadership (e.g. Bould et al., 2018; Bigby and Beadle‐Brown, 2018; Deveau and McGill, 2016), which can be distinguished from general management by its core elements (Mansell and Beadle-Brown, 2012):

• staff are organised around the delivery of person-centred, “enabling and empowering” support according to service-user preferences and needs rather than organisational convenience;

• managers act as role models and demonstrate skills in direct support, observe staff in their work and give regular feedback to help develop and improve practice; and

• staff are involved with the regular review of support using processes, including team meetings and one-to-one supervisions, focused on service-user quality of life.

Practice leadership is associated with staff practice enabling increased service-user engagement in meaningful activities and relationships (Bould et al., 2018; Beadle‐Brown et al., 2014; Bigby and Beadle‐Brown, 2018). Practice leadership is also shown to improve staff experience and abilities in managing behaviour described as challenging, using a range of interventions, e.g. positive behavioural support (MacDonald et al., 2018; Deveau and McGill, 2016; Beadle‐Brown et al., 2012). However, barriers for frontline managers providing practice leadership have been identified, such as the role of administration and “paperwork” (Deveau and Rickard, 2023; Deveau and McGill, 2016; Beadle-Brown et al., 2006).

In view of the established benefits and barriers, this study investigated the experiences of frontline managers delivering practice leadership to staff supporting autistic adults in their homes.

This study used semi-structured interviews with frontline managers of services for autistic adults, most of whom also had a learning disability living in staffed housing in the community.

Fourteen participants were selected using purposive sampling. Potential participants were employed full-time in a frontline management role, i.e. directly managing staff in organisations providing staff support for autistic adults in community residential services. The final sample included: registered and service managers, deputy managers and shift/team leaders, working for two organisations with services in Southern England. Organisation 1 provided largely single-occupancy “supported living” services to adults, many with a diagnosis or were regarded as being autistic, in central Southern England. Organisation 2 (provider of specialist services for autistic adults) providing largely “residential care” in small group homes throughout England. Both operated in rural and suburban locations and reported promoting a practice leadership style of frontline management. Managers had been in post for an average of two years three months with four under one year. High staffing ratios (minimum of 1:1) were similar in both settings.

Senior managers in both organisations facilitated frontline managers to participate, with six managers from Organisation 1 and eight managers from Organisation 2 consenting to participate. Ethical approval for the study was provided by the University of Kent. Informed consent was gained from participants following provision of written and verbal information during recruitment. Interviews were conducted in private settings, mostly administration offices of the organisations. Study findings were shared in written and in-person presentations with participants and their employing organisations.

Face-to-face interviews with consenting managers were carried out by the first author as part of a master’s degree programme, supervised by the second author. Interviews were semi-structured using a topic list developed from existing research and experience of the researchers, plus a small number of set questions for key information (e.g. length of service, number of staff supervised). Participants were asked about their frontline manager roles, e.g. how they develop and motivate staff to provide good support to service-users, and barriers they encounter in doing this. Follow-up questions were used to explore and clarify particular areas. Where (occasionally) participants used generalised narratives, the interviewer asked for specific recent examples to “ground” the narrative back to daily experiences. Interviews lasted approximately an hour, were audio recorded and subsequently transcribed.

Transcribed material was analysed using thematic analysis (Braun and Clarke, 2006, 2021). Codes were allowed to emerge from the data without prior assumptions based upon repetition and similarity of content. Presence of autism as a theme was largely assumed. Repeated readings of the interviews were used to become “immersed in the data”, and initial codes were appended to text, which summarised ideas relevant to the research questions. These codes were grouped together by relationship and significance, leading to the development of potential themes. “NVivo” software was used to manage the data into themes and subthemes.

Reliability of thematic development and conclusions included a blinded check of a sample of coded material and discussions between the authors to examine emerging codes, supporting narratives and their relationship to developing themes. Personal reflection upon the selection and relationships between coded material and thematic development included using a reflective diary and research supervision, which were also used to address researcher bias and reflexivity arising from the researcher’s familiarity with social care environments as a former frontline manager.

The final thematic structure is described below with exemplary quotes. Results presented here focus on participants’ experiences of managing staff to support autistic adults, including the management of behaviours described as challenging. Other results related to barriers delivering practice leadership have been reported separately (Deveau and Rickard, 2023).

Results formed two themes reflecting frontline managers’ shared experiences in roles responsible for providing high quality staff support to autistic “service-users” in both “residential care” and “supported living”:

• Theme 1, “autism in practice” illustrated common issues observed to affect autistic adults with learning disabilities receiving staff support, whilst revealing in a sub-theme the diversity within autism. A further sub-theme focused on participant experiences of staff concerns about managing service-user “challenging behaviour”.

• Theme 2, “what’s important in autism-informed support” reflected frontline managers’ views of the features of successful staff support for service-users, highlighting their experiences of what staff need to deliver person-centred practice.

Sub-themes that emerged are grouped here reflect the most immediate concerns and experiences of the service managers interviewed. The managers reported their experiences based upon their daily work of supporting staff to work with autistic adults.

Participants described working with autistic people as rewarding, complicated and diverse:

Staff needed to be supported to learn large amounts of new knowledge and practices, including support work in general, but specifically about the experiences autistic people may share, and how the individuals they supported expressed these:

Some participants talked about having to counter staff beliefs and misconceptions about autism, for example that individuals feel no empathy, such beliefs being viewed as “damaging to the relationship between staff and the individual” (P2). This was seen as important as participants agreed that the progress of this relationship was the foundation of effective staff support.

Despite being in their roles for differing lengths of time and working in different contexts participant experiences of working with staff supporting autistic adults fell into certain core areas, reflecting differences (e.g. thinking styles and sensory sensitivities) associated with autism and linking the experiences of individuals being supported.

Autistic people are observed as requiring support that promotes routine and predictability. This was strongly reflected in this study, with supports ranging from staff carrying out daily activities in the same way each time, to more formal, skilled approaches such as TEACCH ^[1] (Mesibov et al., 2006) and PECS ^[2] (Frost and Bondy, 1994):

Recognising sensory sensitivities and preferences was seen as similarly vital, with frequent practical implications:

Service-users had a range of communication methods and abilities, e.g.:

Communication differences required staff to use various augmentative approaches such as visual methods, which were linked with (causing and preventing) service user anxiety and behaviours described as challenging:

Despite its importance, participants reported that some staff struggled to use communication supports in practice, for example:

While participants described what they observed to be similarities affecting autistic adults, they also emphasised peoples’ individuality:

“Everyone I’ve worked with, with Autism has been so different” (P2).

For example, the interaction preferences of individuals could vary considerably:

Hence, participants aimed to avoid a “blanket approach” (P10), instead wanting to ensure support was individualised and person-centred.

For participants, this meant there was frequently a need for them to focus on changing some staffs’ perceptions, which could be difficult:

Although study inclusion criteria did not mention behaviour experienced as challenging, all participants managed services where this occurred, ranging “from repetitive speech to physical, challenging behaviours” (P9)

Behaviour described as challenging, for example “He grabs, he pulls hair, he can sometimes kick, and sort of fling his arms out” (P6) was seen as a key concern for staff, as one participant explained:

Some behaviour could be “emotionally and physically challenging for staff” (P2):

One participant highlighted the wide variety of skills that staff need in this context:

Participants reported how staff support may affect the likelihood of behaviour seen as challenging, for example in relation to the loss of relationships and familiarity that occurs with staff turnover:

Behaviour that staff found challenging was also seen as related to characteristics associated with autism such as the need for predictability, and typically beyond an individual’s control rather than purposeful, for example:

Participants said it was important they explained to staff potential reasons for an individual’s behaviour, “give them that ‘why’ behind it” (P2), as without this insight staff were more likely to find it difficult to cope and quit their job:

However, participants all had experience of staff who found understanding behaviour of concern difficult: “Quite a few staff just cannot understand […] no matter what I do” (P9).

Notably participants reported both staff and themselves as finding it harder to cope with behaviour of concern when the autistic individual was perceived as having greater capacity:

All participants expressed commitment to delivering high-quality, autism-informed support. Participants talked extensively about the staff skills and qualities they felt were important in supporting autistic adults whose behaviour could be challenging. Staff responsiveness to the individual and their needs “in the moment” was valued; “meeting the person where they are” (P2).

Many described how they encouraged staff “thinking outside the box” (P8), for example to find personalised support strategies to help an individual recover from a difficult experience:

There was agreement that successful staff adapted their support style and approach to the different preferences of individuals, recognising, for example that “interaction is on his (service-user’s) terms” (P4).

In general, working with autistic service-users required energy and motivation:

Participants said it was common for staff to be:

While supporting service-users to engage in activities and develop competent independence was seen as important, participants emphasised it could also be stressful for autistic individuals, leading to behaviour of concern, as in one example where:

This was a strong sub-theme. All participants felt that staff confidence was crucial, and for many autistic service-users, often more important than other characteristics:

However staff confidence was regularly lacking, which participants linked to some of the challenges associated with supporting autistic individuals.

Staff confidence was important as it played a key role in the use of restrictive practices, for example when the manager was not present:

While participants aimed to support staff to develop confidence, they agreed it could be difficult and time-consuming:

Participants said they acted as practice leaders to assist staff in applying their knowledge of autism-informed approaches. To do this, participants said their presence in services alongside staff was essential, and increased staff confidence. However, being present in this way could be difficult for participants managing single-occupancy services when the autistic individual preferred them not to be there:

When managers could not be present participants said some staff felt unsupported and isolated, particularly when a property was “in the middle of nowhere so not a lot of support, and he (service-user) is very physically challenging” (P3).

Autism has been described as a “spectrum of developmental conditions” (Autistica, 2023), varying in severity and with co-occurring conditions (American Psychiatric Association, 2013). Best practice for supporting autistic people includes general frameworks, e.g. SPELL by the National Autistic Society and expert guidance (e.g. NICE, 2021; British Psychological Society, 2021). This study’s findings suggest that general knowledge of autism needs to be balanced with support personalised for each person; recognising when providing autism-informed support that “there is no one way to be autistic” (Gibbs, 2023).

These results emerged from research focused upon barriers to practice leadership in the support of autistic adults (see Deveau and Rickard, 2023). In essence, exploring issues of support for autistic adults through a practice leadership lens. A large majority of services supported autistic adults and most participants had previous and current experiences of supporting autistic adults. This experience and a “passion” evidenced within participant narratives upon developing skilled staff support for autism suggested this warranted specific attention.

This study concerned staff supporting autistic adults many with co-occurring learning disabilities and complex support needs, often including learning disabilities who could show high levels of behaviours described as challenging. Managers in the study reported that service-user anxiety and associated behaviour of concern were reduced by staff attending to the person’s environment (circa capable environments, McGill et al., 2020), for example by reducing sensory stressors, improving communication and predictability. Staff learnt these skills through experience, with immediate access to supervision and coaching, and with this support developed confidence. This managerial support provided staff the opportunity to develop good relationships with autistic individuals and effective emotional support. Notably both frontline managers and staff experienced greater difficulty in coping with individual’s behaviour seen as challenging when they were perceived as having “higher capacity”. Higher verbal capacity, was often seen as indicating “full capacity” and linked to increased anxiety for staff, and for frontline managers.

Many of the issues related to behaviours described as challenging were experienced as more challenging by participants and staff working in isolation from other staff and managerial support in supported living homes, rather than in group homes. The absence of direct role models, fellow workers or managers contributed to this increased difficulty. The importance of physical presence of the manager (as practice leader) has been reported (Bould et al., 2018). This study supports the suggestion (see Deveau and McGill, 2016, 2019) that other staff may also play an important practice leadership role as models.

Participants were unanimous that staff practice is the most important factor for providing a capable environment (McGill et al., 2020) for supporting autistic people. For example, through their relationships with people receiving services (Hurman and McGill, 2023; McLaughlin and Carr, 2005), and by supporting predictability and communication. High staff turnover and use of temporary staff (Skills for Care, 2020) meant greater unpredictability for autistic individuals, likely to increase anxiety and distressed (challenging) behaviours.

Staff confidence in this study was valued by frontline managers (and families) more than many other characteristics and competencies, but could be lacking. Staff confidence was related to managing behaviours of concern, as without a reasonable level of confidence staff left their jobs, not allowing sufficient time to develop the numerous skills, “strategies and techniques” (P2) required to provide effective support. Managers said they could improve staff confidence, most effectively when they were present to coach staff “on the job” as issues arise, as well as offering feedback following “incidents” through de-briefing and reflective practice. This focus on staff practice was experienced as time consuming and “constant” but important in staff retention, promoting stability and predictability for autistic individuals. Supporting the development of staff confidence required the service manager being present, this was challenging in a few single person services where the autistic adult found it difficult to tolerate the presence of people other than the expected staff. This was seen by participants as a specific characteristic feature of autism.

This study has limitations. The “rich” experiences of these managers may not be readily generalised. The primary researcher had previous experience as a service manager, which may have focused interviews in particular ways. Research supervision was used to reflect upon this issue. Additional data from the people receiving services would ground the reported experiences more holistically.

This study reports the experiences of frontline managers responsible for directing and developing staff to support autistic adults with high support needs. Support in practice focused on providing predictable environments, meeting communication and sensory needs and support with difficult emotional experiences, e.g. anxiety and stress, in a personalised way. However, providing this skilled support could be a challenge without enough of “the right staff” receiving the right leadership and management, to match individuals’ needs. This study is the only one to our knowledge to specifically examine practice leadership in autism-specific support.

The study showed that staff supporting autistic individuals themselves require additional support, particularly around managing behaviour experienced as challenging, and consistent use of autism-informed, skilled approaches. Managerial practices, which can provide this additional support, for example being present, imparting knowledge, role-modelling and giving feedback, are best described as practice leadership.

Professor Julie Beadle-Brown for support and guidance and the frontline managers who shared their experiences.