Parents’ experiences of professionals’ involvement for children with extreme demand avoidance

Abstract

Objectives: Pathological demand avoidance (PDA) is characterized by an extreme difficulty in tolerating everyday demands, with a range of ‘socially manipulative’ strategies used to avoid demands. Children also display poor social identity, impulsivity, and obsessive behavior. While research and knowledge about PDA is slowly growing, families continue to encounter considerable difficulties in ensuring their children’s needs are understood and met by health and education services. This study explored what parents of children with extreme demand avoidance valued about professionals’ input.

Methods: Parents of 42 children who scored above the cut-off on a standardized measure with validated sensitivity and specificity for PDA responded to questionnaire items asking them to identify professionals’ involvement and helpfulness. They were also asked what had characterized the most helpful professional involvement. Thematic analysis was used to identify the key themes in parents’ responses.

Results: Families tended to have high levels of professional involvement. Most professionals were experienced as helpful by the majority of parents. Three main themes were identified as characterizing helpful involvement: enabling access to services and resources, concrete outcomes such assessments and management strategies, and professional-level factors such as skills and qualities.

Conclusions: Parents felt positive about practitioners who had listened to their experiences, made efforts to understand the child, and provided or arranged for help. Parents found involvement most helpful when it resulted in comprehensive assessment, appropriate intervention, practical advice and management strategies, and a focus on the well-being of all family members. The overall ratings of helpfulness are encouraging, and the specific feedback about what is most helpful could be of value in shaping services.

Introduction

Pathological demand avoidance (PDA) is attracting growing attention and recognition in the UK. First identified by English psychologist Elizabeth Newson in the 1980s and described in the research literature by Newson and her colleagues in 2003, PDA is named for the core difficulty with tolerating everyday pressures and demands. Children with PDA often use a wide range of ‘socially manipulative’ strategies to avoid demands, including distraction, delaying, negotiation, charm, claiming physical incapacitation, and behavioral outbursts. Newson et al. (2003) described the group as having surface sociability, lacking social identity, and having difficulties understanding social hierarchy. Children with PDA also have complex difficulties with pretending and role play and show obsessive behavior which may have a social object. There is increasing identification of these traits in the autism spectrum.

Children with PDA present with extreme behavioral challenges. For the majority of children with PDA, their lives are significantly affected both at home and at school (Christie et al. 2012). Parents speak of the pervasive nature of their children’s demand avoidance in every aspect of daily life (e.g. dressing, eating, bathing, going out of the home) and of the impact of this on their family lives (Christie et al. 2012). Gore Langton and Frederickson (2015) found that children with PDA have high rates of challenging behaviors in school, with correspondingly high rates of placement breakdown and exclusion. The group received high levels of educational support, and most children had had involvement from multiple professionals.

Identification of PDA may be particularly important because clinical reports (Newson et al. 2003) suggest that strategies that are effective for children with autism spectrum disorders (ASD) need major adaptations to be helpful for children with PDA; children with PDA can experience routine and predictability as demanding and controlling and instead may thrive on novelty. Traditional approaches to behavior management using reinforcement-based strategies are also argued to be ineffective in PDA (Christie et al. 2012). Often parents report radically rethinking their approach to parenting their children with PDA, moving away from social learning-based approaches, and focusing on regulating their children’s anxiety through modifications to the environment and the manner in which demands are delivered (Christie et al. 2012). Such a shift can be significantly more difficult for schools, whose whole-school behavior management systems are firmly grounded in a reward/consequence approach.

While parent stress has not yet been systematically examined for children with PDA, the literature for children with more typical ASD highlights the stress that parents of children with additional needs can experience (McStay et al. 2014). Families of children with ASD are more likely than families of non-disabled children to be living in poverty, due at least in part to the impact of the child’s autism on parental employment (Cidav et al. 2012). We might expect these effects to be heightened among the parents of children with PDA, who face challenges similar to those that existed before ASD became widely acknowledged. These challenges may include judgment and blame for causing their children’s difficulties through ‘poor parenting’ (Silverman and Brosco 2007) and a lack of understanding, support, and resources from family members, social networks, and the public, as well as from education and healthcare systems.

PDA remains a controversial concept, with relatively little research and a low profile outside the UK. In the research literature, there is ongoing debate about whether PDA is distinct from autism spectrum conditions and other conditions such as oppositional defiant disorder or anxiety disorders, or is a feature of multiple conditions (Garralda 2003; Gillberg 2014). O’Nions et al. (2014) compared the profile of children with PDA with the profiles of children with typical ASD and children with conduct disorder. The children identified as having PDA displayed levels of autistic traits comparable with children with ASD, levels of behavior problems comparable with children with conduct disorder, and higher levels of emotional difficulties than either group. PDA may thus currently be conceptualized as a ‘triple hit’ of autism, conduct problems, and anxiety. Most recently, a general population study of children, young people, and young adults with autism suggested that PDA traits may be present in up to one in five cases of childhood ASD (Gillberg et al. 2015).

In practice, information about PDA is not widely available and, even when parents do find out about PDA, the diagnosis does not form part of the Diagnostic and Statistical Manual of Mental Disorders 5 (American Psychiatric Association 2013) or the International Classification of Diseases 10 (World Health Organization 1992), the two classification systems used by diagnosticians. Although a standardized clinical measure for identifying PDA is under development (O’Nions et al. 2016), the willingness of clinicians to use the term ‘PDA’ varies according to local knowledge and practices (O’Nions et al. 2014). There are also objections among professionals about the term ‘pathological,’ which was intended to describe the extent and impact of children’s demand avoidance, but instead, some feel, ‘pathologizes’ the child. Where parents can obtain a diagnosis, this is the beginning rather than the end of the journey for them as PDA is rarely recognized within systems that assess and provide for educational needs. This situation also presents challenges for professionals, who may find it difficult to identify how they can be most helpful to families. The absence of standardized assessment, criteria, and practice for diagnosing PDA in turn creates difficulties for researchers, who cannot yet use diagnosis as an indication that a child does or does not have PDA. Research, therefore, tends to focus on the descriptive phenotype of ‘extreme demand avoidance,’ and that is the approach adopted in this paper.

The literature for children with ASD shows that professionals have a crucial role to play in moderating the stress and distress experienced by parents during the diagnostic process and beyond. In Singapore, Moh and Magiati (2012) found low perceived collaboration with professionals was associated with higher parental stress for an ASD sample, whereas higher perceived collaboration and higher perceived helpfulness of information was associated with high parental satisfaction. Research with parents of children with learning difficulties and sensory impairments in Germany suggests that satisfaction with professional involvement is also associated with parents’ perceived parenting competence (Sarimski et al. 2013).

PDA thus puts both children and their families at risk of poor outcomes and may confound professionals. In seeking help for their children and families, parents of children with PDA face specific challenges. Children’s demand avoidance is extreme and pervasive and significantly affects the child and family’s functioning. If children are not identified as having PDA, professionals, schools, and parents may use management strategies and approaches that are ineffective at best. However, PDA is not widely known and its status is controversial; professionals’ responses may vary widely, and the wider educational and health systems may present barriers even when sympathetic professionals are identified. Getting professional support right for this vulnerable group is therefore a key priority. This study sought to identify what parents of children with extreme demand avoidance had found most helpful about the professional involvement they had experienced, with the aim of informing good practice among professionals.

Method

Participants

As the processes for identifying PDA in the UK vary according to local practice (O’Nions et al. 2014), recruitment was not restricted to parents of children identified as having PDA by a professional. Instead, parents were initially invited to take part if they considered their child to have PDA. Following approval by the university ethics committee, parents who gave informed consent were invited to complete an electronic questionnaire via an advertisement in the proceedings of the National Autistic Society’s November 2011 PDA Conference, via online support and information sites and forums, and via social media and networking sites. Additional participants were identified through word of mouth among parents. Forty-nine parents returned completed questionnaires. Seven children fell below the PDA cut-off score on the Extreme Demand Avoidance Questionnaire (O’Nions et al. 2014) that their parents had completed, and were excluded from this study. Data were, therefore, available from 42 parents.

Of the 42 children whose parents’ responses were analyzed, 67% were reported to have a diagnosis of some form of autism spectrum condition (autism, Aspergers Syndrome, ASD, atypical autism). Fifty-two percent of the group were reported to have a diagnosis of PDA. Thirty-three percent of the children were female. The mean age was 11 years 4 months ranging from 4 years 9 months to 17 years 6 months. Parental education data, a proxy for socioeconomic status, were available for 88% of the parents. Fifty-seven percent of the parents for whom data were available had NVQ Level 4 education (Higher National Diploma or undergraduate degree) or Level 5 (postgraduate degree) qualifications, compared with 28% of a population sample with children whose age matched the mean age of the current sample (Dex and Joshi 2004).

Measure & data collection

The Extreme Demand Avoidance Questionnaire (EDA-Q; O’Nions et al. 2014) was used to assess the presence of extreme demand avoidance. The EDA-Q is a 26-item questionnaire in which parents indicate whether statements (e.g. ‘Obsessively resists and avoids ordinary demands’) are not true, somewhat true, mostly true, or certainly true of their children. The validation study by the questionnaire’s authors O’Nions et al. (2014), comprised 326 parents and indicated that the EDA-Q has strong psychometric properties and good discriminatory power to differentiate children with identified or suspected PDA from those with ASD, those with conduct problems/behavior difficulties, those with both ASD and conduct/behavior problems, and typically developing children. Internal consistency for the current sample was acceptable (alpha = .71).

As part of a longer questionnaire, parents provided the background information reported above for themselves and their child. The section of the questionnaire assessing professional involvement and its perceived helpfulness asked parents to first respond ‘yes’ or ‘no’ to having ever received services from the list of professionals in Table 1. If they responded ‘yes’ they then responded ‘yes’ or ‘no’ to a further question concerning whether they had experienced that professional’s involvement as helpful. Finally, all participants responded to an open-ended question about the service or professional they had found most helpful, asking what had been helpful about this involvement. The survey items are included in Appendix 1.

Table 1. Professionals’ involvement and helpfulness.

Professional	N families involved with/42	% of involvements helpful
Specialist Teacher	14	64
Behavior Support Team	20	20
Speech & Language Therapist	24	54
Educational Psychologist	37	57
Clinical Psychologist	30	57
Occupational Therapist	21	71
ASD Specialist Worker	15	73
Educational Welfare Officer	9	67

Data analysis

Thematic analysis was used to identify key themes in the qualitative responses. Thematic analysis was selected for its flexibility, which would allow the analysis of both brief and longer responses, and its lack of affiliation to a particular theoretical framework, which made it suitable for use in an exploratory study (Attride-Stirling 2001). The approach to thematic analysis described by Braun and Clarke (2006) was initially implemented by the first author. Step one, familiarization with the data, began with repeatedly reading through the data-set in its entirety. During this phase, notes were made to record initial ideas for coding. Step two, generating initial codes, drew on the notes made during step one. Data were coded using NVivo (QSR 2012). In step three, searching for themes, the codes (i.e. subthemes) were conceptually organized into themes by aggregating similar subthemes that together formed a major idea (Creswell 2011). All themes were inductive. At this stage, tables were used to visually represent the hierarchy of information.

In step four, reviewing themes, the extracts were re-read to determine whether the sub-theme and theme had coherence; at this point, some sub-themes were relocated if they better represented other themes. Sub-themes that were not coherent or had inadequate or overly diverse data to support them were removed. As well as this reviewing process within each theme, the first author also reviewed across themes to ensure that there were clear and identifiable distinctions between themes. Thematic maps (Braun and Clarke 2006) were constructed to provide a visual overview of the analysis. These were reviewed to ascertain whether they accurately reflected the meaning of the data-set as a whole. This iterative process ended when further refinements ceased to make substantial contributions to the analysis.

In step five, defining and naming themes, extracts were selected to illustrate the subthemes based on their vividness or the way in which they exemplified the concepts. As the participants were drawn from a low-incidence population quotations are not mapped onto participants’ demographic information (e.g. stage of schooling) to preserve their confidentiality. Gender and any unique identifying details were also changed in quotations.

Credibility and trustworthiness

Following Brantlinger et al. (2005), several steps were taken to enhance the credibility and trustworthiness of the data collection and analysis. Prior to beginning data collection, the first author undertook a prolonged period of observing the field. This took the form of reading general literature and the online forum, visiting a school with expertise in supporting pupils with PDA, observing an assessment at the Elizabeth Newson Centre and visiting the attached school, and attending the National Autistic Society’s annual conference on PDA. The process of designing and piloting the questionnaire and entering and analyzing the questionnaire data also contributed to the researcher’s immersion in the field.

Due to the large number of participants and the brevity of many of the responses, consensus between researchers was used instead of member checks to establish the trustworthiness of the interpretations and conclusions. The initial coding by the first author was reviewed by the second author, and the subsequent discussion and negotiation fed into reviewing and refining codes and themes (step four). The second author had experience in the process of thematic analysis, and extensive experience of delivering services for children and their families in both frontline and management roles, but had limited exposure to the literature and field relating to PDA. As a result of the coding review, two subthemes were merged in two instances, and one subtheme was renamed. One extract was moved to a different subtheme within the same theme. Two more subthemes were initially flagged for disagreement, but the original code was retained upon review.

Results

Who is helpful?

The percentage of involvements that parents experienced as helpful are shown by profession in Table 1. Most professionals were experienced as helpful by more than half of the families with whom they were involved. The exception was behavior support teams, who were experienced as helpful by only one fifth of parents with whom they had been involved.

The parents also identified the professional whose involvement they had found most helpful. Twenty-nine percent of the parents did not specify any single professional. Clinical psychologists were specified most often (17%), followed by educational psychologists (10%), other CAMHS professionals (7%), and school staff (7%). Seven percent of the parents specified that they had not found any professional involvement helpful (‘no one’ or ‘none’); this response was reiterated by four participants in the open-ended question:

In all honesty, we have felt that few professionals have offered us either diagnosis or support. The clinical psychologist’s comments are that she is ‘strange and complex.’ The paediatrician acknowledges deep rooted difficulties but as [our local area] does not use PDA as a diagnosis she has none.

There is no help and support where I live. The behaviour support team said that she was the ‘wildest child he had ever seen at age five.’

So far no one has been able to fully engage with my child and give any sort of clue as to how to handle her.

What is helpful?

The thematic analysis of the open-ended responses identified three themes, which are shown in the thematic map in Figure 1. Some parents described professional involvement as being helpful in leading to specific outcomes. Others described finding it helpful that professional involvement had enabled the family to access other services and resources. Some parents focused on factors relating to their experience of the professional themselves.

• (1)Outcomes

Figure 1.

Thematic map for what is helpful about professionals’ involvement.

Parents valued professionals who ensured that their children’s needs were properly assessed. This included gathering all of the information, coming to understand the child, and communicating this formulation effectively to others:

The educational psychologist made the best assessment of my child’s educational needs and her assessment carried sufficient weight to get those needs included in his statement.

The school educational psychologist wrote a clear and insightful report

Some parents described professionals providing direct interventions that had contributed to improvements:

The school counsellor worked through his feelings, anger, anxiety, etc., to help him to understand how he was feeling.

Combination of art therapy for our child and family therapy for us has been good, but takes time and has now suffered from staff changes.

Others described professionals as giving helpful advice about practical management strategies for the child at home and school:

The clinical psychologist didn’t focus on whether or not there was a diagnosis; she recognized he was an anxious child who struggled significantly when he didn’t feel in control, and she focused instead on finding ways to help him feel more empowered.

The behaviour support team are helping my daughter with her outbursts by ensuring she has a ‘safe’ place to go.

Occupational therapist found our daughter has severe sensory processing difficulties and equipment such as dark den and weighted blanket have proved very helpful.

They noted, however, that these strategies had to take into account the difficulty parents had with eliciting their child’s compliance:

Professionals offered good advice but not the means to put it into practice e.g. exercises from the SALT [speech and language therapist] or from OT [occupational therapist] are probably good but PDA child won’t do them.

Parents described valuing professionals who provided support at the level of the family, rather than focusing solely on the child:

The clinical psychologist has worked with our son since he was 3. He has a fantastic understanding of him and offers advice not just for him but for our whole family.

The clinical psychologist has helped me through some dark times and enabled me to realize that although I can help my child, I am not responsible for her outbursts of bad behaviour.

The interaction we have had with the clinical psychologist has been excellent, providing us with support and information … Overall we have had a very positive experience.

The inclusion support workers worked with me at home and helped develop a relationship between school and myself. When my daughter gets older this service will no longer be available to her. I am not looking forward to her future in mainstream with reduced support.

• (2)Enabling access

Parents valued professional involvement that enabled them to obtain what they perceived their child and family to need. For many parents, learning about PDA and being given a diagnosis of PDA was key in their journey as a family:

The educational psychologist has observed my son in class and brought PDA up and I feel that has made more sense than anything else.

The clinical psychologist I see with CAMHS [child and adolescent mental health services] first alerted me to PDA. I was amazed, excited and concerned all at once as I felt I was reading a description of my son.

Getting the correct diagnosis from CAMHS for PDA has helped so as to use the correct strategies.

The clinical psychologist... ensured diagnosis was made before my son started school, so right help could be available from beginning.

Statements of Special Educational Needs (a UK document setting out the child’s educational needs and the support to which they are entitled) were also important to parents, who spoke about professionals being able to not only support requests for statutory assessment, but also to ensure that the resulting statement accurately described the child’s needs. Parents also highlighted professionals’ help with identifying, securing funding for, or arguing for appropriate educational placements; for some children, these were mainstream placements with experience of SEN, whereas other parents mentioned specialist or independent provision:

The educational psychologist’s excellent report has been copied word for word into the statement.

The early years specialist teacher found our child a placement in a playschool with an understanding of special needs.

The most helpful people so far have been the local residential school where we believe he needs to be placed. They have met my son and offered some comments and words of encouragement in supporting us in our parent-led Statement.

Specialist CAMHS gave helpful advice regarding suitable types of educational provision and evidence to support our claim that the provision of the LEA [local education authority] was inappropriate.

Parents also valued professional involvement that they perceived as opening doors to other support services and resources, including health and social care services:

The GP listened and worked hard trying to access services and funding (CAMHS and Healthy Minds repeatedly refused but Healthy Minds finally agreed), even communicating with the school.

The OT [occupational therapist] was excellent- she helped us get everything we needed to make the house a safe place for her.

The social worker got us short breaks.

• (3)Professional-level factors

Parents identified particular qualities that they felt made services helpful for the families who access them. They reported experiencing helpful professionals as understanding, listening, and caring. Particularly important to parents was feeling that professionals were non-judgmental and adopted a no-blame approach:

The school has been the only set of professionals to listen to us so far and not simply blame our parenting.

So far the occupational therapist has been most helpful as she was the first professional in two years of being ‘in the system’ to actually listen, take us seriously and give us something definite in writing so we could start to get help for our child … Until then we had nothing but ‘parenting classes’ offered and no recognition of our son’s problems at all.

We have found the educational welfare officer very helpful … as he has been on board from the start that our daughter is not a truant and that there is a support need that is not being met.

We were assessed and supported by an urgent help team from tier 4 CAMHS … The team provided a diagnosis and level of understanding we had not previously experienced.

My daughter’s portage worker was excellent and was both patient and understanding towards her at all times.

The team at his current special school have made great efforts to understand all aspects of him, meet his needs (educationally and socially) so he feels safe and secure and happy. The head and deputy are key to this but their care and enthusiasm goes all through the school.

Helpful services also prioritized continuity and relationships with families, so that parents reported feeling known and supported by the service over time:

The paediatric specialist … sees us every six months to a year to keep an eye on him.

Even now after her diagnosis we continue to have interaction and support from CAMHS.

Several parents felt that the professional’s availability had been key in their helpfulness, as the parent could easily reach the professional, who was available to support when necessary:

The paediatrician has written letters, discussed matters of [school] exclusions on the phone and attended an emergency review meeting.

The child and adolescent psychotherapist has supported us all along- is available, accessible and positive.

Parents described valuing professionals who had knowledge and experience of PDA or were willing to learn about PDA:

The educational psychologist understood PDA.

The clinical psychologist listened. She admitted she didn’t know anything about PDA but took steps to learn more about it.

Discussion

This article investigates the professional involvement that parents of children with extreme demand avoidance had found most helpful. Children tended to have had high levels of professional involvement; this is consistent with the challenges they experience both at home and at school. Educational psychologists were the professionals most likely to have become involved, perhaps reflecting the particular challenges that poor compliance and explosive behavior present in a school context, which relies on children’s obedience. Almost one third of families had received involvement from a clinical psychologist, demonstrating that children’s difficulties were not confined to school.

More surprisingly, parents were likely to experience professionals as helpful, with rates of helpfulness ranging from 57 to 73% for all professionals and services except behavior support teams. Parents were most likely to experience ASD specialist workers as helpful. This was interesting considering that one of the key rationales for distinguishing PDA from ASD is that the management strategies for the two types of difficulty are argued to be so different (Newson et al. 2003). As no parents named the ASD specialist worker as the most helpful professional, there were no qualitative examples of what was helpful about their involvement. It may be that their underlying understanding of impaired flexibility and social understanding, social communication difficulties, and sensory needs meant that ASD workers had the expertise to adapt flexibly to meet the needs of children with extreme demand avoidance. Occupational therapists’ helpfulness was also highly rated; the qualitative data showed that parents valued their expertise in children’s sensory issues and their practical focus on interventions and environmental modifications to improve children’s day-to-day lives.

Educational welfare officers, who become involved when there are concerns about children’s school attendance, were the least likely to have been involved, but had high ratings of helpfulness. As this professional group can initiate court proceedings against parents on behalf of the local authority if they believe that parents are failing to facilitate school attendance, it is encouraging to see that parents instead tended to experience their involvement as helpful; one qualitative comment explained that the educational welfare officer had understood the child’s school refusal as symptomatic of the child’s anxiety rather than as being caused by the parents. In contrast, only one in five parents who had experienced involvement from a behavior support team reported this involvement as helpful. It is possible that this reflects a focus by behavior support teams on managing observable behavior rather than addressing its causes and reflects their usual recommendation of behavioral approaches such as rewards and consequences, which are reported to be problematic in themselves for children with PDA (Christie et al. 2012). Educational psychologists and clinical psychologists were equally likely to be experienced as helpful. Qualitative data showed that parents experienced these professional groups as having both unique and overlapping skills. Educational psychologists were valued for their ability to identify PDA and mobilize educational support systems, while clinical psychologists were valued for their power to diagnose PDA and for their holistic support to families.

Although parents were not explicitly asked about school staff, several parents cited school staff as the most helpful professionals involved with their child and family. This may be because school staff can provide many of the aspects of support that parents reported valuing, such as direct interventions, practical support, building a relationship with the child and family over time and providing considerable continuity and availability.

Parents valued professionals who could directly meet the family’s needs. For many families this focused on being able to assess their children’s needs. Parents did not tend to refer to specific types of formal assessment, but instead alluded to comprehensive formulation as helpful in making sense of children’s difficulties. While a few parents described valued interventions provided directly by professionals, many others valued the management strategies that professionals had suggested for them to use in day-to-day life. This was related to parents’ appreciation for support that addressed the needs of the whole family. For some parents, the identification of PDA was the route to the professional being able to suggest appropriate management strategies. Other parents described a professional stance of not needing to know what the problem was ‘called’ to identify effective intervention.

Accessing a diagnosis became important to families because it often held the key to getting the right educational support. The UK special educational needs system is supposed to be needs-led rather than diagnosis-led. However, one parent observed that although the educational psychologist had carried out the ‘best assessment,’ ‘access to an appropriate [educational] setting was not available until a medical diagnosis was secured.’ Statements of special educational needs (now education, health and care plans) and specialist educational placements were a major need for families, and professionals’ helpfulness was often judged on their effectiveness in facilitating this process. This focus is consistent with the high rates of school placement breakdown experienced by this group of children (Gore Langton and Frederickson 2015) and the difficulty of identifying suitable educational environments (Christie 2007). Parents sometimes reported valuing access to practical resources, including respite and specialist equipment. Despite the financial impact that children’s difficulties might be expected to have had on families, no parent explicitly addressed financial resources or support. This may reflect the disproportionately high educational qualifications (and corresponding affluence) of this study’s sample.

Professionals’ skills and qualities were identified as important by the parents in our sample. Many of these skills, such as listening, being sympathetic and caring, being available, and providing a continuous relationship, were generic across the professional groups. The emphasis on these skills may reflect the particular emotional strain on this group of parents, who run the risk of encountering professionals who consider the symptoms of PDA to represent attachment difficulties caused by parenting and who judge parents who raise the possibility of PDA as being keen to ‘pathologise’ their children or as over-anxious self-appointed ‘internet paediatricians.’ It was interesting that parents did not require professionals to have prior knowledge and understanding of PDA; although they valued this, there was an equal emphasis on professionals being open to learning about PDA. These findings parallel an increasing emphasis on considering professionals’ interpersonal skills and attitudes rather than focusing solely on their remit or expertise (Osborne and Reed 2008).

This exploratory study may not represent the general experiences of parents of children with PDA; in the absence of systematic identification of PDA, there is not yet any information on what might constitute a ‘representative’ sample. A limitation of the recruitment strategies used was that the parents who participated in this research were more likely to have had higher education than the general population, be informed about PDA and connected with PDA networks, and be motivated to complete a questionnaire for research purposes. It may be that a sample more representative of the general population would identify additional or competing priorities, such as support to access financial resources such as Disability Living Allowance (a UK financial allowance to account for the higher day-to-day costs of living with a disability).

Overall, what was striking was the universality of parents’ wishes when it came to professional involvement. Like parents of children with other developmental difficulties, parents of children with extreme demand avoidance want insightful assessment and appropriate intervention. They want to be able to access the educational support, other services, and broader resources that their children need. They want professionals who are willing to learn about their children’s difficulties, listen to parents’ experiences of their children, care about the children and their families, and provide continuity of care. This involvement may be harder for parents of children with extreme demand avoidance to find than for families whose children have more established developmental disorders, but the involvement is highly valued when it is offered:

We were lucky to have had several good professionals help us. Together they transformed our son’s life … He was so stressed, out of control and unhappy that he actually asked me to kill him rather than have to go to school. Now that he is diagnosed, has a Statement and TA support, he is understood, he is much happier at school and starting to comply with the daily school demands.

Box 1 summarizes the ways in which the responses of this group of parents suggest professionals might be most helpful to families when they encounter children with extreme demand avoidance. Our hope is that practitioners will find these ideas useful in reviewing practice with and services for this vulnerable group of children and families.

Box 1. Effective professional support for children with PDA and their families.

Making sure to…

•Listen to parents from a no-blame perspective •Be willing to learn more about PDA •Be accessible to parents during difficult periods such as school exclusions •Allow families to build relationships and receive continuity of care

Staying outcome-focused by…

•Carrying out comprehensive assessments of children’s needs •Communicating our formulations clearly •Offering direct interventions to improve children’s day-to-day lives •Giving practical strategies and advice to help family life run more smoothly •Keeping the well-being of the whole family in focus

Opening doors by

•Supporting families to obtain a diagnosis which reflects their child’s needs •Helping families to navigate the special educational needs system •Referring to and liaising with other services which can meet families’ health and care needs

Funding

This study did not receive external funding.

Acknowledgment

The authors thank all the parents who kindly shared their experiences.

Appendix 1.

Disclosure statement

The authors declare that they have no competing or potential conflicts of interest.