INTRODUCTION

Young people with autism spectrum disorders (ASD) present with cognitive, interpersonal and adaptive deficits (Dominick et al., 2007; Wagner et al., 2014), such as a lack of understanding of social situations, difficulty in filtering sensory information, social and communication difficulties, and empathy deficits. These difficulties can lead to disruptive, oppositional or aggressive behaviour (Rutten et al., 2017), which impacts multiple systems of a young person's life. While ASD brings additional vulnerabilities which may increase risk, young people with ASD will also be open to the same risk factors as “neurotypical” young people.

In families, Baker et al. (2011) found that low levels of family adaptability and coping were associated with increases in disruptive, oppositional or aggressive behaviour. Furthermore, experiences including caregiver stress (Lecavalier et al., 2006), psychological distress, and objective and subjective burden (Picardi et al., 2018) were reported as higher than caregivers of those with neurotypical children, as well as reduced social support (Picardi et al., 2018).

Educational and peer relationships are also impacted (e.g., Wagner et al., 2014). Research has suggested that young people with ASD are more likely to have shorter (Bauminger & Shulman, 2003) and lower quality (Petrina et al., 2016) friendships than their neurotypical counterparts. This may make them the target of bullying (Little, 2002), resulting in reactive aggression (Humphrey & Symes, 2011) often directed toward teachers (Kanne & Mazurek, 2011) and with subsequent negative effects for staff (e.g., Ashburner et al., 2010; Hastings & Brown, 2002). Therefore, systems with which young people with ASD interact are both impacted by and may maintain disruptive, oppositional or aggressive behaviour. Consequently, any intervention targeting such behaviour must go above and beyond the cognitive, social and adaptive difficulties with which a young person presents and consider the systems within which they are living. This notion that practitioners work in collaboration with individuals and with their family members, caregivers and other systems in the person's life is supported by the UK National Institute for Health and Care Excellence (NICE, 2015).

Furthermore, NICE guidelines for working with children under 19 years of age with ASD recommend psychosocial interventions to treat core features of autism (NICE, 2013). They specify interventions to increase caregivers', teachers' or peers' understanding of, and sensitivity and responsiveness to, the young person's patterns of communication and interaction. Helps (2016) conducted a systemic literature review and highlighted the benefits of family and systemic interventions for people with ASD.

Multisystemic Therapy (MST; Henggeler et al., 2009) is a family and community intervention for young people who are at risk of care or custody due to antisocial or aggressive behaviour. The referral criteria for the standard MST intervention includes young people who present with mildly impaired communication and social interaction difficulties, where an ASD diagnosis might be suspected or diagnosed. The difficulties with which young people present are reflected in the American Psychological Association's (2013) Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5) ASD severity Level 1,¹ whereby difficulties are defined by noticeable impairments in social communication in the absence of support, as well as an interference in functioning due to inflexible, restrictive and repetitive behaviours. Levels 2 and 3 of the DSM-5 ASD diagnostic criteria, which reflect more substantial impairment, are excluded from the standard MST referral criteria.

A version of MST, specifically adapted for working with young people with ASD, is in the efficacy stage of development (Wagner et al., 2014), and a clinical trial has shown promising results (Wagner et al., 2019). However, the intervention is not in full implementation, and presently the standard version of MST is most routinely applied to young people with a suspected or diagnosed ASD reflecting Level 1 impairment. Understanding the experience of therapists in delivering the standard MST to working with young people with a suspected or diagnosed ASD is relevant for understanding the potential benefits of applying standard MST with these young people, as well as informing the further development of an ASD-specific adaptation of MST. Therefore, this study aims to explore MST therapists' experiences of standard MST delivery to young people with a suspected or diagnosed ASD (reflective of Level 1 impairment).

METHOD

Design, materials and ethics

This qualitative study employed a semi-structured interview design to explore MST therapists' experiences of working with young people with a suspected or diagnosed Level 1 ASD. An interview schedule² was informed by the work of Wagner et al. (2014) regarding the adaption of MST for young people with ASD and included questions such as “How has delivery of the model differed from working with other populations?” and “Have there been any success stories?”

Ethics

The study was granted ethical approval by Royal Holloway University of London Ethics' Committee. Additionally, the study was approved by the MST Services research committee.

Recruitment and sample

Information about the research was sent to all standard MST teams in the UK and Ireland (At the time of data collection, this was 24 teams.) for self-selection into the study. The inclusion criteria were that participants were MST therapists or supervisors with experience of delivering standard MST when the young person, defined as 11–17 years of age, had a confirmed or suspected (through individual supervisor clinical judgement) diagnosis of ASD reflective of Level 1. If therapists or supervisors were working or had worked with a young person where they suspected Level 1 ASD, and the young person or family were actively pursuing an ASD diagnosis, then they were eligible for participation in the study. Twenty-two potential participants were approached; 11 MST therapists or supervisors responded and were interviewed, reflecting a good sample size for the analytic approach (Braun & Clarke, 2013). After analysis of the 11 interviews, a decision was taken to end recruitment on the basis that data saturation had been reached. Interviews took place over a 6-month time frame between July 2018 and December 2018. The participants had worked in MST Services for 1 to 9 years, and confirmed that they had worked with at least one family with ASD or suspected ASD. The therapists were asked to generally recall the clients with whom they had worked; for confidentiality purposes, formal confirmation of such cases was not sought. Demographic characteristics of the anonymised participants are presented in Table 1.

Procedure and data processing

MST therapists and supervisors who met the inclusion criteria and were interested in taking part in the study contacted the research team. Telephone interviews were organised at a mutually convenient time, and these facilitated timely response to research interest and engagement when participants were responding from across the UK and Ireland. Interviews ranged from 45 to 60 min in length, and were audio-recorded. Interviews were transcribed verbatim and transcripts anonymised. Pseudonyms were applied to participants to maintain confidentiality.

Data analysis

An inductive, sematic thematic analysis was applied to interview data, following Braun and Clarke's (2006) six steps. Braun and Clarke (2006) outlined and defined thematic analysis as a method for identifying and analysing patterns, or themes, within data; they specifically highlighted the active role the researcher plays in identifying said themes. Thematic analysis has many advantages over other qualitative approaches, making it useful in psychological studies; it is an accessible, theoretically flexible approach to qualitative data analysis that allows for a rich, detailed account of the data (Braun & Clarke, 2006). All researchers took part in the analysis of the data and identification of themes separately, before meeting to agree on a consensus. The steps followed tie-in with the standards for reporting qualitative research outlined by O'Brien et al. (2014).

Researcher characteristics and reflexivity

Researchers' qualifications varied from the master's level to the doctorate level. All researchers had backgrounds in either clinical or forensic psychology as well as experience working with young people with ASD. The power differences between researcher and participant were minimised by the researcher conducting the interviews being independent to the organisations of the participants. The different backgrounds of the researchers (one Asian male and two White British females) enabled different perspectives and positions in the understanding of the emerging themes. One researcher had substantial experience supporting the delivery of MST within the UK, which included the training of MST clinicians working directly with families. This would have impacted on making sense of the research findings.

FINDINGS

Three major themes and nine subthemes emerged through thematic analysis to describe therapists' experience of delivering MST (see Table 2).

Theme 1: Nuanced MST delivery for ASD

Participants explained that although the application of the MST model for families of young people with Level 1 ASD was similar to that for young people with a neurotypical presentation, there were nuances of delivery that made working with an ASD population different. This included more consideration of the young person's specific needs, such as developmentally tailoring plans, and the importance of structure, routine and consistency, which included behaviour management plans, and psychoeducation for parents and schools.

Subtheme: Standardised, but individualised application of MST

Participants explained that the application of the MST model for Level 1 ASD was largely similar to its application when working with other clinical populations:

I think because the model is quite, so we're quite flexible with what we do, erm, and it's very, you know, individual to the families that we work with when we do conceptualisation, I think it's, it's not been too different, really. (Meera)

However, the participants explained that while the application of the model was similar, there was a need for individualisation and ensuring plans are developmentally appropriate; the intervention should follow the needs of the young person and family, with a particular focus on the young person's drivers of behaviour. For example, Alice commented “When you perhaps have a clear idea of what you need to do and be very specific about what that person struggles with, with ASD, I think you're on the right pathway to ensuring the interventions fit that.”

Individualisation specifically focused on explaining plans and rules simply and carefully to make the MST model more accessible for young people with Level 1 ASD:

We just have to adapt it in terms of how we're delivering it, and providing explanation, more explanations, more preparations for the plan going in, more, you know breaking, simplifying it, you know, making it quite visual and accessible that way. (Laura)

Support around improving communication with the young person, both in the therapeutic process and for parents, was seen as essential:

Finding ways of … communicating with the young person that they respond to and you can kind of get, or have a more productive conversation with them … an example of one person who's absolutely fascinated with that Fortnite game … that was the only thing that mattered to him, you could talk to him through the game, or communicate with him while he was playing the game … So kind of teaching Mum how to communicate with him in a way that was gonna be … pleasing to her, you know, get her what she wanted … but also … work for the young person as well … and also doing things visually as well. (Genevieve)

Subtheme: Psychoeducation around ASD and MST

Participants explained that a key aspect of MST delivery was psychoeducation for caregivers and schools about the nature of ASD and the MST process:

So, psycho-educating mum around autism and how her son might be behaving differently to someone who wasn't diagnosed with that, I don't know if we would have had the, the ability to do that if MST wasn't moving along in the way that it is doing. (Vicky)

Furthermore, psychoeducation helped the therapists manage the expectations of the families in terms of how far they could go.

A major thing that's come up each time is communication, and sort of managing expectations sometimes of parents in terms of how far we can move things forward, in terms of the communication … and … needing to do a lot of psychoeducation work about what the difficulties are with, with the communication. (Vicky)

Psychoeducation was important in order to inform schools of the specific needs of the young people with Level 1 ASD.

Even just making sure that schools are … really taking into account the needs of the young person, especially if there's anything around sensory needs. (Meera)

Subtheme: Structure, routine and consistency across systems is key

Therapists explained that they focused on ensuring that not only the schools and parents were on the same page but also the community, which included neighbours.

Everyone looking at things from the same perspective, was really important. (Vicky)

Consistency within the neighbourhood, as well, worked so well. (Hannah)

Consistency and structure were perceived as allowing the young people with ASD to better engage with the intervention, as it was in line with their need for structure and routine: “because it's brought structure and routine, and positive praise to those young people. And helped parents understand their behaviour, because the thing is they get a diagnosis from other services and then that's it. There isn't any more support.” (Kara).

When questioned about which interventions within MST were particularly useful, many of the therapists cited behaviour management plans as being something with which the young people could engage and even enjoy, due to the structured nature:

We've made it appropriate for young person with ASD, to make sure that it is something they will understand as well, like a behavioural management plan, and again the child really kind of takes it on board … behaviour plans where you sculpt behaviour by rewards and consequences … actually, young people with ASD really enjoy that. (Layla)

Participants also explained that behaviour management plans were useful for the parents when trying to manage the conduct problems shown by the young people with ASD, as it gave them a clear plan that both they and the young person could understand, implement and follow:

It's very clear for them, and it's been quite reassuring for them because parents can sometimes promise things and then go back on it whereas a behavioural contract is a good way to ensure that, you know, what they think is going to happen definitely will happen. (Meera)

However, participants recognised challenges with implementation:

When you're working with young people with ASD, it's not just a guide to … what should be happening, I think they can … become quite rigid about sticking to it, so if then the parents are seeing it more as a guide … that can lead to difficulties in itself … ‘cause then they might start to stick quite rigidly to it. (Laura)

It was noted, however, that because of the needs of young people with ASD, behaviour management plans needed to be designed and implemented with care. Alice commented “We think of all the possibilities and try and plan and predict for them and take on that it's a little bit different for the ASD population, in terms of the failure and success.”

Subtheme: Differing experiences around the peer domain

Within this area, the accounts of participants varied. Some thought that negative peers were not an area of concern. For example, Kara said that in some ways “It's easier to work with people with Aspergers' because they don't have negative peers.” However, other participants highlighted the difficulties of the young people in forming friendships:

They find it difficult to make and maintain friendships and … sometimes don't go … for the right type of friendships and kind of get taken advantage of in the ones they think are friends … But yeah the three young boys in particular that are coming to my mind they don't have … any close peers. (Noreen)

Difficulties in identifying and engaging the young person in positive activities was also highlighted:

I tried to get her into positive activities but she just wouldn't. She did start going to youth club … one on one activities that she could do alongside others, to be with others but not have to interact with them, but it just never, it never really happened. (Kara)

Theme 2: The need for knowledge and resources

Participants made clear that knowledge of Level 1 ASD and the associated difficulties, across parents, schools, and MST participants, was important for the application and delivery of MST. When there was a gap in the knowledge, or resources, in any of the agencies or systems, the delivery of MST was more challenging.

Subtheme: Therapist's knowledge and training of ASD impacted on MST delivery

Participants felt that having prior knowledge of ASD was important when applying the model to young people with Level 1 ASD: “I've got quite an understanding of ASD anyway. If I didn't have that understanding, then I think I'd have really struggled with those cases” (Genevieve).

The need for ongoing learning was identified:

I think obviously there's an extra layer because there's … a diagnosis in there … so I guess it's important for the therapist to understand as well how ASD like can effect behaviour … I suppose it will be important for therapists to be aware of more about what the specific ASD needs might be. (Gina)

Consequently, participants explained that one of the most challenging aspects of delivering MST to young people with ASD was a perceived gap in their knowledge of the condition:

Working with a family with ASD is a learning curve and it's a hard one sometimes because there's things that you are, you're quite used to the therapeutic spiral and you have to really plan your sessions to make sure that it is ASD-friendly. (Layla)

Participants explained that ongoing supervision, including from colleagues, allowed for a bridging of that gap in ASD-specific knowledge and skills:

One of my colleagues had a case that he just did so well on and obviously in supervision and consultation every week he gave us an up-date and that was before my first case of ASD, so I also remember thinking that was useful ‘cause I kept thinking back to his case and how he did things slightly differently and how he adapted the model. (Noreen)

Additional ASD training, provided by the MST consultants, was perceived to be useful for participants when planning individualised interventions to meet the ASD-specific needs of the young person: “We actually received a booster [training] on ASD … and that allows us to open our thinking and look at it differently … and see how our interventions do need to be tweaked” (Vicky).

Subtheme: Caregivers as experts

The participants explained that caregivers, on the whole, showed a good understanding of their child, and of ASD itself, and helped the therapist to understand the specific needs of the young person:

What I found really helpful working with that particular family was that Mum did have a really good knowledge of ASD and what that means for the children and like … The parent's the expert, aren't they? (Gina)

The families that I work with at the moment, they are amazing problem solvers, there are things that they've come up with I've thought “Wow, that's an excellent idea, I can use that.” (Layla)

Participants explained that without parental input around understanding the young person's needs, MST could have been very challenging to deliver, even when the therapist had a basic knowledge of ASD.

Subtheme: School differences in meeting the needs of young people with ASD

Participants explained that working with some schools was challenging because mainstream schools, in general, lacked an understanding or appreciation of the difficulties shown by young people with Level 1 ASD. Meera commented “That school had an understanding of his needs, but I think sometimes, because it was a mainstream school, I don't think all of the teachers were considering it enough.”

In contrast, when schools were sufficiently resourced and knowledgeable, the process of delivering MST for young people with ASD was thought to be less demanding.

What was also helpful is that school really understood the young person as well, and we had, like, their community autism team … come into … our meetings … so they were sort of in the loop with what kinds of things we were doing … if they sort of felt like interventions and things needed tweaking, or might be more effective if you changed like certain bits … they were giving that input as well, so that really, I suppose, strengthened and reinforced … the directions we were going in. (Gina)

Theme 3: Positive experiences when delivering MST to the ASD population

Participants explained that overall, delivering MST to families of young people with Level 1 ASD had been a positive experience. They thought that young people and their families engaged well, and that there were positive outcomes.

Subtheme: Young people with ASD engaged well with MST

The participants explained that young people were open to the idea of engaging with MST, sometimes more so than were young people with neurotypical presentations:

Generally we've had quite a positive … more so from young people I've worked with with ASD than not, so that's a bit of a difference I guess. People I've worked with with ASD have been a lot more welcoming with it. (Meera)

Participants reported that caregivers also engaged well, and it was explained that many families did everything they could to ensure that there were positive outcomes, with MST language becoming a part of their daily lives, perhaps to a greater extent than with neurotypical young people and families:

Once they've got it, they entrench it into their lives, they embed it, and by the time that you're done, MST is their language. (Layla)

Subtheme: Perceived positive outcomes

Participants seemed keen to share their success stories of applying MST to Level 1 ASD young people and their families. Participants thought that despite the challenges around a lack of knowledge and resources, as well as other barriers, the intervention resulted in positive outcomes across the board.

I think Mum was able to manage behaviours at home more effectively and in the community, and then with the EHCP [Education, Health and Care Plan] coming in, that happened after MST, but I do know that that was accepted and now he's in education that is working for him … so it was a really good outcome for us. (Vicky)

Participants' value of support, knowledge and reflective learning was highlighted:

It comes with different challenges, but once you're mindful of that and you understand, and you've got a good supervisor … you know you can easily overcome these things and the families really value it, you can see that they thrive with the MST model, they really do … and the young people as well. (Layla)

DISCUSSION

This study set out to understand the experiences of MST therapists and supervisors of delivery of standard MST to young people with a suspected or diagnosed Level 1 ASD. Three major themes were: (1) nuanced delivery of MST for ASD, (2) need for knowledge and resources, and (3) positive experiences when delivering MST to an ASD population. These themes will be discussed in detail next.

Nuanced delivery

Participants believed that delivery of MST for young people with Level 1 ASD was a largely similar process to that for families of young people with neurotypical presentations; however, there were certain nuances which were needed.

There was an increased emphasis on understanding the individual needs of the young person and interventions taking account of the specific individual drivers that impacted behaviour in addition to how the systems responded to the young person. MST is an intervention that targets all the systems around the young person, with particular emphasis on empowering the caregiver to manage the behaviours (Henggeler et al., 2009). However, in order to achieve this, participants thought it was essential to understand how the ASD specific needs played out in the referral behaviours and interventions required to take account of these individual needs. This is supported by previous research suggesting that caregivers of young people with ASD make adjustments to their parenting approaches to respond to those specific needs (Maljaars et al., 2014; O'Nions et al., 2018).

Participants identified that having clear structure, routine and consistency was particularly salient for young people with Level 1 ASD. This included supporting caregivers to develop and implement behavioural management plans so that everyone was clear around expectations for behaviour, with clear and consistent incentives and consequences. Having well-defined visual schedules and plans is something that has been echoed by previous research (O'Nions et al., 2018).

Participants' accounts within the peer domain varied, with some highlighting that there were no concerns around negative peer association and others identifying difficulties with making friendships and developing pro-social activities. This is an area that requires further research.

Knowledge and experience of ASD across systems

Participants reported that one of the more challenging aspects of delivering MST to young people with Level 1 ASD was a perceived lack of knowledge and experience of ASD within the different systems, including therapists and supervisors, caregivers, the community and the school.

Prior knowledge and experience of ASD was thought to be important for therapists and supervisors, as were further training and supervision in ASD. This was viewed as helping develop a skills base and the understanding to support families. Parental experience was seen as a key source of knowledge, with caregivers said to contribute to the therapeutic process. Participants acknowledged that although they sometimes would need to educate caregivers, the caregivers themselves played a role in educating the therapists and contributed to care plans; parents of children with ASD can share their knowledge of their children's needs, strengths and interests with educators to facilitate learning in both the home and school (Harte, 2009). Participants explained that parental knowledge and experience allowed them to learn about the young people and adapt the intervention accordingly.

Participants thought that they needed to support schools in understanding both Level 1 ASD and MST. Some schools in particular were believed to struggle with meeting the needs of young people with ASD, which was explained as due to both a lack of knowledge and their restrictive policies. In contrast, when schools were viewed as knowledgeable and sufficiently resourced, the delivery of MST was thought to be less challenging, demonstrating that schools can be a useful resource to draw upon when working with young people with Level 1 ASD. These findings have implications for research showing that young people with ASD have considerable challenges in mainstream settings (Mandy et al., 2016), including being at increased risk of school exclusion (Donno et al., 2010).

In general, participants explained that they had an overall positive experience when delivering MST to young people with Level 1 ASD, including the perceptions that positive outcomes were achieved. MST, as a model, is designed to be adhered to, but in a flexible way, which supports the specific needs of young people.

Difficulties experienced by young people with ASD impact on various systems (Ashburner et al., 2010; Kanne & Mazurek, 2011), and previous research has suggested that systemic interventions are helpful for families in which someone has ASD (Helps, 2016). The use of MST is also aligned with much of the previous research, which may explain why therapists thought it was a good fit for people with ASD.

Clinical implications

The clinical implications of these findings include the need for additional training for MST therapists and supervisors (and caregivers and schools) regarding Level 1 ASD, to facilitate the application of the standard MST model in a tailored, developmentally appropriate way. Findings also support the need for a more formal (empirically based) adaptation of MST for ASD. Beyond MST, family and/or systemic therapists in general could consider the need to adapt treatment for clients with ASD, considering the impact that disruptive, oppositional or aggressive behaviour shown by clients with ASD can have on the whole family and the wider systems around them (Lecavalier et al., 2006; Picardi et al., 2018). Assessment may need to have an increased focus on understanding how the specific individual needs of the young person may contribute to their behavioural difficulties, with interventions being modified to meet these specific needs.

Strengths, limitations and future research

The present study provides useful insight into the experiences of therapists and supervisors in delivering standard MST to an ASD population, something which has not been considered by previous research. This is useful because therapists are on the front line and have first-hand experience when working with young people with ASD, and so are able to give good insight into the process. Furthermore, the findings highlight the aspects of standard MST delivery upon which to focus further adaptation when working with ASD young people and their families. In order to build on the findings of this study, more research is required for Level 1 presentation of ASD in MST generally, including quantitative research looking at outcomes for those with ASD and those with a neurotypical presentation. This would allow therapists to provide a nuanced intervention, designed to meet the developmental needs of young people with ASD.

One particular limitation of this study was that there are many different terms used for ASD in research—between different services and even within MST teams. As a result, and because clinical judgement was used when considering a suspected Level 1 ASD, there were likely differences in the application of the MST referral criteria across the different teams sampled in this study, and some participants might have been speaking about their experience of working with young people who would not have met the diagnostic Level 1 threshold for ASD. It should also be noted that a young person with a suspected Level 1 ASD might additionally meet the criteria for other mental health or neurodevelopmental disorders, such as attention deficit hyperactivity disorder or intellectual disability (Mazefsky et al., 2012). Mazefsky et al. (2012) suggested that similarities in manifestation of ASD and other disorders can overshadow diagnostic symptoms of ASD and contribute to delayed diagnosis. As such, we relied on the clinician's own judgement as to whether they considered ASD symptoms to be present; if this was the case, and the young person or family was actively pursuing an ASD diagnosis, then it was seen as sufficient to be reported on in the study, and such cases were included. In an attempt to remove any ambiguity, future research could adapt the inclusion criteria from this study to only include therapists or supervisors who have worked with young people who have a confirmed diagnosis of Level 1 ASD. Nonetheless, we regard the findings of this research to reflect the experiences of therapists and supervisors in delivering standard MST to young people who present with difficulties defined by noticeable impairments in social communication in the absence of support, as well as an interference in functioning due to inflexible, restrictive and repetitive behaviours.

The positive outcomes reported in this study were those perceived by therapists and supervisors; we do not know the extent to which these positive outcomes would be reflected in the experiences of the young people and families who engaged with standard MST. Furthermore, outcomes were experience-based rather than based on quantitative data; future engagement might add further support to the use of standard MST with Level 1 ASD or emphasise the need for specific adaptation of MST to the ASD population.

CONCLUSIONS

These findings suggest that the delivery of MST must take into account the cognitive, interpersonal and adaptive deficits presented by young people with Level 1 ASD in order to make MST be developmentally appropriate for this population. A high level of knowledge (and sufficient resources) around ASD is needed from therapists, supervisors, families, communities and schools; a lack of such provisions makes the application of MST for ASD challenging, and thus the intervention may not meet the young person's needs. Despite these challenges, participants reported positive experiences when delivering MST for this population, suggesting that the standard model can be applied to young people with Level 1 ASD.