This theme relates to participants’ accounts of reasons given for psychologists to become involved with children, often known as the referral question. Psychologists noted that reasons given by referrers were often removed from a full understanding of the child’s experience.

References were made to demand avoidance which presented as externalised emotional responses directed toward self, others, or material objects. Some psychologists used broad-stroke descriptions, such as “physical outbursts,” perhaps owing to psychologists receiving this information second-hand. One psychologist (female) was more explicit having witnessed a response first-hand, “he lay on the floor, rolled himself up in the rug and started kicking to the point where I was concerned because the walls were glass.” One psychologist (female) recalled the caring adults felt “targeted” when children “make comments, about weight, accent and skin colour.”

Disengagement as a feature of demand avoidance was a likely indicator for psychological involvement, viewed as an internalised emotional response. One psychologist (female) feared that cases of internalising demand avoidance were not reaching psychologists as much as she might expect. Each child described was experiencing daily demand avoidance, however, the most common reason for involvement was individuals failing to leave the house. Another psychologist (female) noted, “he spent a lot of the previous 4 years in his bedroom.”

The idea that individuals’ regulation went “from 0 to 100” was another common referral question. Whilst few psychologists had witnessed this themselves, one (female) who had, recalled the child “screeching, but the next minute switching into high-quality conversation.”

This theme describes three main challenges for psychologists which include, an ill-defined construct of EDA, working with varying levels of understanding of the child amongst adults and additional professionals, and service boundaries which require management.

Participants acknowledge the contested EDA construct has implications for professional understanding, practice, and relationships. One psychologist (female) recalled a frustrating conversation with a colleague who questioned, “aren’t they all demand avoidant by adolescence?.” One psychologist (female) noted, “I feel nervous, because it’s not in the DSM, yet something has to exist to reach the threshold.” Others questioned the value that EDA would add, with one psychologist (male) describing a risk of, “getting caught up in the high grass, instead of focusing on the actual practical implications,” whilst another psychologist (female) added, “what matters is getting this person out of their bedroom!.” Psychologists expressed frustration that although a needs-based rather than a diagnosis-based focus exists in some educational systems, a focus on diagnostics remains, “on the one hand you do not need a diagnosis to get support along the continuum, but, if you have requested special treatment, then you need a reason” (female psychologist).

One expressed concern that with growing awareness, over-identification of the profile could occur. Many participants disliked the language used in the construct title and definition, rejecting the term pathological (a synonym for extreme in the construct title), based on the medical model of disability. One participant’s experience was that the construct encouraged them to focus solely on the language of demands and avoided generating a fuller understanding. The term manipulative was also problematic because this was not felt to accurately reflect the child’s experience.

Psychologists describe a key challenge relates to families and schools’ level of understanding of the child’s experience. Many acknowledge the influence of parents’ experience of being parented. One psychologist (female) appreciated her recommendations were novel for parents, “it was just so unusual initially…encouraging her 14-year-olds to do these things.” Another psychologist (female) noted parents’ commitment to traditional education pathways impacts upon progress, “she pushed him beyond what he could reasonably achieve.” One psychologist (female) felt the impact of working with parents who are neurodivergent made aligning goals difficult, “the parent had challenges with communication and executive functioning, making it very difficult.”

At school, social and learning expectations, the number of adults and other children involved were also reported as barriers. Psychologists explained that cultural norms were sometimes mismatched with the needs of the child. For example, in relation to a common school rule in the UK and Ireland regarding uniform, one psychologist (female) found a uniform rule exasperating, “Why do you have to wear a skirt? Just be flexible!.” Participants described that many of the children they met had first been identified as autistic and were supported with traditional autism approaches which might not be useful, resulting in difficult experiences. Parent and school staff understanding could be mismatched, often resulting in blaming parents. For example, one parent a psychologist (female) worked with, was told she was “a ridiculous mother seeing problems where there were none.” This lack of consensus in how to support children with complex needs contributes to adult exhaustion, which, in turn causes difficulty for psychologists, as it reduces adults’ capacity to build on psychologists’ work.

The psychologists also encountered challenges with several professional issues. Psychologists described a lack of control over many factors within systems in which the children existed. Some psychologists found it difficult when parent agency meant a poorer perceived outcome for the child, for example regarding school choice, “ultimately, I cannot make that call, but it was very difficult holding that because I am worried about the long-term implications” (female psychologist). Not being privy to relevant contextual factors was also acknowledged: “psychologists operate in an imperfect process, we are reliant on information relayed to us but that’s subject to the perception of the narrator” (female psychologist). A further challenge was delay in accessing the latest research, which caused guilt for some psychologists, “it’s tough when you see this young person in distress, and you think, we should have known what was going on” (female psychologist). Service boundaries involving time was also seen as a challenge, with many noting this type of work is time consuming. Others noted being restricted in who they could work with, e.g., not being allowed to work directly with parents.

A key sense of togetherness was communicated in relation to psychologists collaborating with others to bring change for the children. Shared experience, supervision, and expertise from other disciplines including occupational therapy, speech and language therapy and psychiatry, was reported as being valuable. Having follow up from professionals from other services was useful, owing to services boundaries. Psychologists referred to a need for both formal and informal fora, noting, “you need to be sitting in a room, here’s a case study, this is what transpired, these are the approaches” (male psychologist). Learning alongside colleagues was seen as important, “we trained together, so we implemented our learning together” (female psychologist), another described team meetings which included reflecting on “what we screw up and what we get right” (female psychologist). Whilst one psychologist noted relying heavily on academic research, another acknowledged a time barrier, “I do not have the luxury to be looking through research, I’d love someone to point me in the direction of something practical” (female psychologist). Twitter was noted as an efficient method to connect with the autistic community.

Some psychologists noted the approaches associated with the EDA construct had been supportive. One stated “I still draw on the information for when you need an alternative approach” (female psychologist), noting the construct can offer an explanation as to why more traditional strategies have failed. Another psychologist described using EDA approaches daily. Psychologists welcomed the addition of the current research, hoping that it would yield practical implications.

This theme illustrates the ways in which psychologists conceptualised the child’s presentation. This theme is connected to the other theme of psychologists’ reason for involvement, as it describes how psychologists conceptualise demand avoidance and other influencing factors. In addition, this theme includes data pertaining to psychologists’ descriptions of when demand avoidance is considered extreme.

Psychologists mainly attribute demand avoidance to autism or ADHD and anxiety at “exceedingly high” (female psychologist) levels resulting in autonomic bodily responses. Experience of autistic trauma, inertia, intolerance of uncertainty, burnout, or a mismatch between autistic and neurotypical understanding, were all named as influential. One psychologist noted that “children who are autistic have been traumatised numerous times before there is an understanding of where their autonomic nervous system is at” (female). Another explained, “demand avoidance might lead backwards to something that happened which was frightening, and nobody explained it” (female). Whilst some psychologists felt that demand avoidance was natural and adaptive, others described it as resulting from a “complex interweaving of family stuff” (male psychologist) or described it as involving many factors, a “curious mix” (female psychologist).

Such complexity was reflected in the range of challenges psychologists described children facing at biological, cognitive, behavioural, affective, and family/school/community levels, with the latter two appearing most influential in contributing to the child’s presentation based on psychologists’ accounts. Affective factors included negative experiences of expectations (of time, social encounters and abilities, health, and school), feeling a lack of physiological safety owing to not being seen or heard “he was at that top end of the fight or flight, in a really heightened state of anxiety all the time” (female psychologist), being punished for things outside of their control, and not having trusted connections, resulting in emotional responses communicated in a different way.

Family, school, and community factors noted by psychologists as challenges for children included relationship dynamics, as well as cultural norms about how people experience the world. One psychologist (female) described family expectations, they had another child, and they were applying the same rules to her, but we said “look, this is different”. Ruptures across key relationships was also reported as being common.

Psychologists described demand avoidance as extreme when it was evident from early childhood, occurred in another neurodivergence, included externalising, and internalising emotional responses precipitating harm to others, linked to strong interests in individuals, appeared as the child having a “definite view” (male psychologist), evidenced a mismatch between age expectations and the child’s tolerance, and impacted on the child doing what they needed or wanted to do.

This theme describes psychologists’ focus in supporting the children they described (See Table 4) via improving adult practices. The focus on working with the adults involved with the child rather than the child themself highlights the truly systemic nature of the psychologists’ role. Psychologists empower adults by validating their experience, bringing awareness of assumptions, building understanding, and supporting them in tuning in to individual need, whilst considering environmental factors. “Taking a step back” (female psychologist) from culturally influenced expectations was referenced. “Tuning in” (female psychologist) often involved giving the child a voice. One psychologist (female) recalled thinking “you [parents] might know a lot about autism, you might know a lot about ADHD, and you obviously know loads about [medical condition] but you do not know what it’s like to be this girl.” Openness to regularly adjusting the type of support is deemed important, with a psychologist (female) noting, “I was under no illusions it would be long lasting.” Supporting children presenting in this way was deemed to be “quite skilled” work by one psychologist who noted, “I think it is down to subtlety in approach and it is very, very individualised” (male psychologist).

This theme addresses psychologists’ descriptions of success in their involvement with children. Psychologists communicated that indicators of success may be small. They noted that adults’ understanding increasing is a key feature, with one psychologist (female) describing her involvement as having “shifted the parents thinking about her as defiant, to trying to reduce her stress levels.” Another psychologist (female) noted a parent now “takes steps back in order to go forward.” Others described increased self-awareness for parents as important in achieving co-regulation, “she [mother] was the most regulated she had been ever, and he [child] completely opened up in a way he’d never done before” (female psychologist).

Psychologists also described features of successful change for children, including relating to other people, seeking others, tolerating imposed boundaries, or going to necessary places. In relation to attending therapy appointments, one psychologist (female) noted “she tolerated me, and she came back,” and another (female) spoke of increasing ability to tolerate school, “attendance went from 10 min three times a week, to 90 min every day, massive progress.” A reduction in signs of child distress was also seen as important.

Firstly, psychologists’ descriptions of demand avoidance in children emphasised their need for support, regardless of their orientation towards the EDA construct (Woods, 2020). Children’s need to avoid demands was understood as arising owing to the differences between neurotypical individuals and neurodivergent individuals, which gives rise to complex interactions. Consistent with Brede et al. (2017) and Doyle and Kenny (2023), challenges were associated with home and school evidenced by the high prevalence of school moves and poor health experienced by children and parents. Such a finding indicates difficulty with traditional schooling, which is likely to have led to negative experiences for families and schools. Duncan et al. (2011) also refer to the impact of late identification of such a profile, noting that less helpful approaches may have been used where a full understanding was lacking. Early support gives children the opportunity to achieve success.

Despite controversy surrounding EDA, psychologists did not experience supporting these children as particularly different to other neurologically divergent groups. One common experience was that of tensions amongst different stakeholders and different levels of understanding. Whilst the department of education model of resource allocation (Department of Education and Science, 2017) suggests schools can cater to need without diagnosis, psychologists communicated that schools still find it difficult to deviate from the norm. Doyle and Kenny (2023) also queries the utility of needs-based models where very novel approaches are needed, such as in EDA. Insight from young autistic people who had been excluded from school similarly emphasised the lack of understanding of their needs as central to their failed school placements. The young people also cited difficulty in understanding how all pupils finding school challenging could successfully tolerate being placed in the one classroom. Accounts in the current study also described tensions in relation to school placement, where psychologists might not see a placement as a good fit for the child. The new progressing disability service model in children’s disability teams in Ireland also recommends parent prioritisation of goals (Bradley et al., 2020), which may present similar difficulties for supporting clinicians.

Consistent with previous research, both within the demand avoidance literature and more broadly within professional psychology literature, certain factors were seen as enabling success for psychologists. Psychologists valued learning from peers and from research disseminated efficiently, as has been found elsewhere (Law and Woods, 2018; Hoyne and Cunningham, 2019) as well as through collaboration with other disciplines (Atkinson et al., 2013; Doyle and Kenny, 2023). Psychologists in the current study also valued access to neurodivergent perspectives. Space and time for learning opportunities is likely a challenge in organisations, but its value cannot be understated. Twitter was acknowledged in the current study as a key avenue to engaging with neurodivergent individuals. Since NEPS and primary care psychology are single discipline services in Ireland, it follows that systems may need to be in place to facilitate multidisciplinary working.

Despite a lack of guidance about practices for supporting children with demand avoidance, many psychologists in the current study approached demand avoidance in a similar way to other psychological difficulties, by focusing on the child’s underlying needs (Astle et al., 2022), and by building understanding for all involved (Milton, 2018). Psychologists emphasised the individualised nature of this work which draws on a strengths-based approach to diversity, consistent with previous findings (Wilding and Griffey, 2015; Doyle and Kenny, 2023). Clinical guidance produced by National Institute for Health and Care Excellence (2013) emphasises the individual nature of support in the case of autistic children and the PDA Society (2022) in the case of autistic children with an EDA profile. In supporting children, psychologists drew upon a range of approaches including relational, with a focus on adult self-regulation (Cunningham, 2022), anxiety-based, as advocated for by White et al. (2022) and, neurodiversity-informed, as suggested by autistic children themselves (Goodall, 2018). EDA adults (Johnson and Saunderson, 2023) and autistic young people experiencing demand avoidance (Brede et al., 2017) also referenced the role of the relationship with trusted adults around them in emotional regulation and the role of uncertainty and change in anxiety. Approaches associated with EDA were also in use, argued by Woods (2019) to represent good practice in supporting neurodivergent children. Behavourist methods described in other studies (e.g., Law and Woods, 2018) were not often mentioned in the current study, perhaps owing to a move towards neurodiverse affirmative approaches identified by psychologists as becoming increasingly relevant to their work. Using a range of approaches makes sense for psychologists as, regardless of their psychological challenges, children’s minds and histories are diverse (Allsopp et al., 2019).

In approaching demand avoidance in children indirectly, increasing adult understanding and managing expectations were seen by the psychologists as being important, in line with previous findings (Law and Woods, 2018; Hoyne and Cunningham, 2019; Eaton and Weaver, 2020) and clinical guidance (National Institute for Health and Care Excellence, 2013; PDA Society, 2022). Christie’s (2007) guidelines placed strong emphasis on the significant support needs of the adults working around a child presenting as demand avoidant. In addressing adults’ own anxiety, psychologists encouraged them to value diversity and to move away from a within-child deficit model influenced by psychocentrism (Gruson-Wood, 2016) and developmentalism (Gabriel, 2021), common in education, towards viewing difficulties as occurring relationally.

Developmentalism results in demand avoidance being misinterpreted as pathological, as it deviates from what is expected for children according to age (Moore, 2020). Adults’ experience of being parented and of education were also seen as influencing their expectations, in line with Kerr and Capaldi (2019) and Hornby and Blackwell (2018). Indirect work with parents and teachers means the quality of the relationship matters (Hoyne and Cunningham, 2019). In the context of demand avoidance, parents value good listening, care, no judgement, and openness (Gore Langton and Frederickson, 2018). The Department of Education model for resource allocation (Department of Education and Science, 2007) and the Progressing Disability Service (PDS) model for children’s teams (Bradley et al., 2020) in Ireland both rely on empowering the adults in a child’s life.

Psychologists also described encouraging adults to regularly review their practice, noting that this may be difficult as needs change and develop over time. Previous authors have suggested continuity in access to psychologists might be helpful (Gore Langton and Frederickson, 2018; Doyle and Kenny, 2023), with support increasing and decreasing as needed (Green et al., 2022). In theory, both in children’s disability teams and in NEPS, children can achieve recurring support, although this is of course dependent on the limited availability of psychologists.

Despite its original categorisation as pathological demand avoidance, and the lack of consensus regarding demand avoidance as occurring within autism, psychologists have typically observed demand avoidance in autistic individuals. Demand avoidance as occurring solely within autism has been strongly campaigned for (e.g., PDA Society UK). A strong recognition factor described by families upon receipt of the diagnosis and approaches described as differing from those used for other autistic people are being cited as evidence for the existence of a sub-type. Eaton and Weaver (2020) highlight the central feature of EDA appears to be anxiety, which is itself not a diagnostic feature of autism. Woods (2022a,b,c) suggests that there are power differences at play, with the potential for the autism industry to create an EDA product that would allow private practitioners to gain financially by offering a contested diagnosis. High levels of support for EDA may be therefore explained by social identity theory which describes disabled people needing to create in-groups to protect against ableism (Bogart and Dunn, 2019). In the current study, psychologists’ acceptance of demand avoidance as occurring mainly in autism shows the power of mass interest and suggests that care must be taken regarding the social influence on constructs of disability (Woods, 2022a). Woods (2023, p. 48) describes how a “premature communities of practice” can form as a result of campaigning on social media, in this case relating to EDA as occurring soley within autism.

Psychologists viewed children’s presentations broadly, as complex, and as occurring because of a range of factors, and not solely associated with demand avoidance. Features included high levels of distress, and documented impact on health of children and adults, replicating findings of Brede et al. (2017), Gore Langton and Frederickson (2018), and Doyle and Kenny (2023). In line with previous findings (e.g., Doyle and Kenny, 2023), psychologists attributed differences to known features of neurodivergent individuals. Some psychologists used the language of neuroscience, describing autonomic bodily stress responses which happen in the context of imposed demands. This may also align with the Royal College of Psychiatrists (2020) who highlight avoidance of demands is a common feature of humans, in a brief note on PDA in their guidance on the psychiatric support of autistic adults. Adults experiencing EDA in the study by Johnson and Saunderson (2023) also reference the role of the autonomic nervous system in explaining their bodily responses, though some discussed being motivated by stress which perhaps suggests a role of volition. Stress response explanations are consistent with models described by Green et al. (2018) and Woods (2022b) which take the view that stress is transactional with the environment and occurs when demands exceed coping ability. Transactional models have implications for environments such as homes and schools in which children exist. Given the high level of stress exhibited by children in the current study and previous research, it seems that demands placed on some children do not appear to match their coping ability.

All psychologists in this study described the children they worked with as experiencing extreme levels of demand avoidance. Much of what is known about demand avoidance is based on Newson et al.’s (2003) early criteria for EDA. Parallels exist between Newson’s criteria and the criteria described by the psychologists in the current study, but key differences also emerged. Importantly, social manipulation was not discussed by the psychologists, although it is a central feature of Newson’s descriptions. In addition, the psychologists described the impact on what children want or need to do as being important, which showed respect for the individual, rejecting a developmentalist perspective (Moore, 2020). Contrastingly, Newson et al. (2003) focus on children not carrying out actions as desired by adults. In addition, Newson does not refer to the transactional context where demands exceed coping ability. Whilst Newson included developmental features, e.g., language delays, other authors had removed them (O’Nions et al., 2016) and one psychologist saw emergence in early development as important in delineating EDA from demand avoidance. Other features described by Newson which achieved little or no coverage by psychologists in this study include passive early history, comfort in role play and, soft neurological signs.

Though the psychologists in the current study reported using a range of approaches to work with children with demand avoidance, representing good practice for neurodivergent individuals (Woods, 2019), most rejected the medicalised language and utility of the EDA construct. Rejection of medicalised language is reflected in the variety of terminology available to describe EDA and has been identified previously amongst psychologists (Raskin et al., 2022). Few psychologsists were open to including the profile as part of an autism identification and had previously done, consistent with suggestions by the PDA Society UK in their 2022 guidance. Most psychologists focused on children’s underlying needs, which may be in line with a transdiagnostic approach as described by Astle et al. (2022). This approach recognises that some characteristics in children’s profiles occur outside of categories, giving the example of autism and anxiety. A transdiagnostic model focuses on characteristics, over diagnostic label, and is in line with Doyle and Kenny (2023) who suggest noting the presentation of anxiety and demand avoidance in formulation. Guidelines from the Royal College of Psychiatrists (2020) relating to autistic adults also advocate for managing underlying factors such as severe anxiety. Even advocates of PDA question the utility of diagnostic classifications and note that different profiles can present with similar features (Duncan et al., 2011). In a foreword to a book from the perspective of an 11-year-old girl with PDA written by Duncan et al. (2011), a leading clinical psychologist in the field, Judy Gould, notes that its content is likely to be of use to individuals “not conforming to conventional social rules, who are oppositional, or just different” (Fidler and Christie, 2015, p. 10). Rather than adhere strictly to a categorical approach, a transdiagnostic model may be of value as it allows for early identification of strengths and vulnerability, potentially reducing inequality in accessing support, as children do not have to wait for characteristics to be sufficiently problematic to reach a threshold.