Sage Journals: Discover world-class research

Abstract

People with Neurodevelopmental (ND) conditions are often unfairly stereotyped by society, without fully appreciating their strengths. As a result, their advantageous behaviours may be overlooked or ignored. Despite wide psychoeducation on ND in society there is a push from the scientific and ND community to move from a binary diagnostic system to an approach that encompasses the spectrum experienced by individuals. In view of this, we have developed the Portsmouth Alliance Neuro-Diversity Approach (PANDA), a coproduced method which helps facilitate understanding, communication and early support for individuals who may be Neuro-Diverse. 51 young people, their parents and attached professionals participated in the approach’s feasibility to improve wellbeing and symptom management measured by quantitative and qualitative means. Results showed a significant improvement in the child’s wellbeing, but not symptom management. Overall, this indicates the PANDA could facilitate a more holistic approach for referrals, information gathering, psychoeducation and cross-system relationship building to be used in conjunction with a traditional pathway. Though, this study is limited in scope, its main purpose is to inform future development of the approach. Additionally, more research investigating the specific narrative, and separate structure of the PANDA would be required to highlight the strengths and limitations of implementation.

Keywords

Neuro-diversity ASD ADHD neurodevelopmental disorders psychoeducation wellbeing symptom management

Introduction

Modelling Neurodevelopmental Conditions

Neurodevelopmental (ND) conditions have been understood and researched within the scientific community for well over 50 years. Most of the research in ND conditions being viewed through the medical model of “disorders” (Van Wijngaarden-Cremers et al., 2014). This model attempts to reduce or cure symptoms, identifiable via the deficits said to cause significant impairment to daily life (Baker, 2011). Seemingly however, ND conditions do not have a biological marker, with at best a genetic aetiology (Bai et al., 2019). Therefore, in their absence, the medical model mostly ascertains deficits based on behavioural deviations from the norm (Anckarsäter, 2010).

Due to the methodology of disorders classification, it tends to invalidate or dismiss advantageous, possible holistic reasons for, and society’s role in determining the appropriateness of these behaviours (Norbury & Sparks, 2013). This labelling of “disorder” and omission of advantages could enforce the societal view that these patterns of behaviours are inherently pathological and require a form of treatment to “cure” these “undesirable” conditions, to shift these individuals closer to the average (Falissard, 2021). The pathologizing model therefore does not differentiate between conditions resulting mainly from poor fit between person-environment and conditions that are the sole causes for the observable deficits (Baker, 2011), with the ND community exclaiming “It is society that disables us” (Kenny et al., 2016).

Despite the pathologizing, ND individuals do not typically view themselves within this treatment model (Kapp et al., 2013; Shaw, 2021), but these opinions are dismissed from the medical community as a lack of epistemic authority on the topic (Hens et al., 2019). However, those who are quick to dismiss the lived experiences are the same neurotypical researchers and professionals who contribute to the technocratic power structures (Evans, 2013). Despite this, there is recent push back against this top-down dictation of ND research, with The Shaping Autism Research UK advocacy group pushing for a more inclusive research methodology (Fletcher-Watson et al., 2021; Niner & Portman, 2021). Overall, there is a need for a newer, more progressive system to understand, support and explain ND differences.

Concept of Neurodiversity

Neurodiversity” was a term coined by Sociologist Judy Singer referring to the natural variation observed in the human brain in a non-pathological sense (Singer, 1999). It is now used to describe a range of neurocognitive developmental disorders, including Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder and Dyslexia (Doyle, 2020; Kapp et al., 2013).

Lead autism researcher Simon Baron-Cohen offered four key advantages that neurodiversity approaches and terminology provides over standard diagnostic procedures in his Editorial Perspective (2017):

1) Terminology is inclusive of scientific and philosophical underpinning of development being within a spectrum, that there is no single brain which is “normal”, as during development the brain can be wired up in many ways.

2) Avoids stigmatized labels which can be damaging to a child’s development (Gibbs and Elliott., 2015) thus fulfilling the need for more ethical, non-stigmatizing language and concepts for thinking about people who are different.

3) Neurodiversity would build a framework that takes a balanced view, to give equal attention to what a person can and cannot do. There is still disagreement within the ND community if diagnostic labels like ASD or ADHD are seen as helpful or problematic (Riccio et al., 2021), but they acknowledge that there is a need to focus on an individual’s talents which can be lost through diagnostic labelling (Kenny et al., 2016).

4) Neurodiversity is inclusive of the biological variation that is intrinsic to a person’s identity, which should be given equal respect alongside other forms of diversity.

Despite the neurodiversity movement, there is a gap within clinical and educational practice to develop a tool to help these professionals format discussions with individuals under the theme of neurodiversity.

Supporting Neurodiversity

Research has provided insight into the positive effects of environmental changes for neurodivergent individuals, and the benefits when removing societal barriers. This paper has noted major factors to support a neurodiversity approach.

Factor 1 - Psychoeducation

Psychoeducational courses have been shown to increase the levels of wellbeing and satisfaction in parents, teachers and neurodivergent individuals. (Zhou et al., 2019). These courses have also been shown to improve the child’s symptom management as reported by clinical staff, educational professionals, caregivers, and child (Dahl et al., 2020). De-stigmatisation, and reduction of ND individuals adopting stereotypical beliefs has been a possible reason for these improvements (Gibbs et al., 2020; Gibbs and Elliott. 2015). Parents have reported increased bonding with their child (Legg & Tickle, 2019). Implying that psychoeducation increases positive parental perceptions of ND, which may improve their neurodivergent child’s self-esteem by enabling parties to reframe to a strengths-based perspective.

Factor 2 – Professional Relationships

Despite the quality of the relationship between parents and clinicians being reported as crucial in improving parent experiences (Abbott et al., 2013), parents have reported feeling excluded by clinicians during the diagnostic process (Griffith et al., 2013; Potter, 2017). Additionally, Crane et al. (2018) found that autistic adults, parents, and healthcare professionals identified lack of awareness from teachers as a barrier for care. This can be supported by use of a need’s led approach viewing a child beyond these labels, which takes into consideration “threshold cases” where a child may not display enough “need” for a label but there are still significant needs present. Using a participatory design involving parents, neurodivergent individuals and education professionals should increase feelings of inclusion and break down barriers to support. This design promotes neurodivergent autonomy and empowers teachers in their approach (Leadbitter et al., 2021) and adopts the “nothing about us without us” (Charlton, 1998) mantra intrinsic to disability rights.

Factor 3 – Early Support

Parents typically report waiting around a year between having their initial concerns and seeking help through diagnosis with many parents citing the long wait times as the key cause of their stress (Crane et al., 2016). This stress is exacerbated when parents are alone finding information on the internet, sometimes believing “the worst-case scenario” (Connolly & Gersch, 2013). Overall, post-diagnosis support is reported as unsatisfactory by autistic adults, parents, and professionals (Crane et al., 2016; 2018; Potter, 2017), which is often anticlimactic and does not produce the support expected. There is an identified need for early access to a service that provides screened information packs and signposting to ongoing support networks, which result in positive attitudes to service and empowerment. (Connolly & Gersch, 2013).

At its core, the PANDA was developed to provide a holistic experience using the crucial factors mentioned above (i.e., psychoeducation, fostering professional relationships through inclusion and empowerment and providing timely assessment and early support). PANDA was coproduced with individuals with lived experienced and multidisciplinary professionals from field of education, health, and social care.

The aim of the current study was to evaluate the feasibility of introducing this new approach for neurodiverse young people. Two hypotheses for this pilot are:

1. The approach will improve the wellbeing of the child from the perspective of the professional, the parent/carer and the child.

2. The approach will improve the symptom management of the child from the perspective of the professional, the parent/carer and the child.

Methods

Recruitment process and enrolment of participants

Information about the study was disseminated to educational settings within the Portsmouth Local Authority, Solent NHS CAMHS and Education Psychologist Team. Only professionals who completed the Neurodiversity training were able to refer participants. Prior to inclusion, all participants received a phone call from a member of the research team. No compensation was offered.

Participants

51 young people participated, average age of 7.98 years (SD = 2.61; Range = 3–15 years) with 64.7% Males and 35.3% Females. 96% of the participants were referred from educational institutions while 4% were referred from health care.

Inclusion and exclusion criteria

Inclusion criteria were (1) Identified by a Neurodiversity trained professional as having an issue in one of the nine Neuro-Diversity subsections (2) Has a primary caregiver willing to participate. (3) Aged 3 – 18 (Inclusive). (4) In a Portsmouth educational institution. (5) Is in the catchment area for Portsmouth CAMHS.

Exclusion criteria to avoid potential data contamination was: (1) Participant in another research intervention trial in the past 2 months. (2) Undergoing treatment specific for ND conditions. (3) More than 4 months from starting a treatment process. (4) Primary caregiver insufficient use of spoken English that could exclude them from fully engaging with research materials.

Treatment fidelity

Each educational professional attended a structured training on the approach, split across three 4-hour long sessions. Moderation and support were offered in person during each session, alongside drop-in weekly supervision sessions with research team members to ensure treatment fidelity. The training manual was written by the developers of the approach, and relied on their extensive clinical, lived, and academic experiences.

Procedure

Protocol

1. Once referred, potential participants were screened in accordance with the project’s inclusion and exclusion criteria. A consent meeting was co-ordinated at the young person’s educational setting with educator, child, and parent present.

2. Participants were asked to complete baseline questionnaires and reminded not to discuss answers. Project materials were provided and required to be read before the next meeting 1–2 weeks later. Supplementary material for reading ages 7+ was provided.

3. This meetings aim was to complete the profile building and related strategies and resources. Confirmation was required before the meeting could proceed that participant had read the material provided. Repeat questionnaires were completed after the profile was completed.

4. Three months later, participants were met with again to reflect on the process. Questionnaires were completed again, and participants were asked if they consented to be contacted for the second qualitative stage of the project.

Focus Groups

Focus groups were split according to their respective participant membership, either parents/carers or educational professions with convenience sampling. Participants met in groups of 4–5 for about 1.5 hours. Groups were facilitated by two of the authors.

Interviews

Interviews were conducted for the young people. These participants met with two of the authors at their educational institution for roughly 1.5 hours. The facilitators outlined the purpose of the interview to discuss their experience with profiling.

Materials

(Child) Outcome Rating Scale

The Child Outcome Rating Scale (CORS) and Outcome Rating Scale (ORS) are a self-reported four-item analogue scale to measure the change of life functioning due to interventions. These four areas include: symptom distress; interpersonal well-being; social role; and overall wellbeing. The ORS and CORS differ on the accessibility of language used. The ORS uses language reflective of a 13-year-old’s reading level, while the CORS has more child friendly language and pictures of faces in each dimension to facilitate understanding (Duncan et al., 2003). Research on the measures demonstrates high reliability and validity (Murphy, & Rakes, 2019), and is a routine measure used in CAMHS (Child and Adolescent Mental Health Services).

Strength and Difficulty Questionnaire

The Strengths and Difficulties Questionnaire (SDQ) is a behavioural self-reported questionnaire. The SDQ asks 25 statements on a 3-point Likert scale (Not True, Somewhat True, Certainly True). There are three versions of the SDQ based on the person completing the questionnaire; Parental, Teacher and Student. The SDQ is a well-established tool with good reliability and validity (Muris et al., 2003).

Quantitative Analysis

Both the wellbeing and symptom management efficacy-related measures were analysed using a series of repeated measures ANOVAs with a baseline score, profile building score and post-intervention score as a within-subjects repeated measure factor.

Qualitative Analysis

Interview and focus group data was analysed using thematic analysis (Braun & Clarke, 2006). The first stage of the analysis, transcribing, was performed by the third author of the paper, and during this process initial thoughts and ideas were noted down. In the second stage, data was read and re-read several times and descriptive codes were generated, which was then reviewed by the first author. The authors considered how to retain the variation of the initial codes, while producing higher order themes to group the codes. The research question of the impact of PANDA in the lives of participants informed this process. Themes were reviewed prior to defining and naming them, to which they were finalised.

Results

Quantitative Results

A repeated measures ANOVA determined that mean wellbeing scores differed significantly between time points for parents (F (1.768, 60.125) = 4.481, p = 0.019), professionals (F (1.914, 72.72) = 4.796, p = 0.012) and young people (F (1.706, 51.192) = 43.375, p = 0.049). Details can be found in Table 1 and Table 2. A repeated measures ANOVA determined that mean symptoms scores did not differ significantly between time points for parents (F (1.698, 59.418) = 1.077, p = 0.338), professionals (F (1.765, 67.072) = 1.186, p = 0.307) and young people (F (1.43, 30.023) = 0.394, p = 0.609). Details can be found in Table 3 and Table 4.

Table 1.

Greenhouse-Geisser Correction for Overall Significance in the PANDA’s Effect on Wellbeing According to Grouping.

Grouping	Sum of Squares	df	Mean Square	F	Sig	Partial Eta Squared
Parents	291.577	1.768	164.884	4.481	0.019	0.116
Professionals	378.724	1.914	197.905	4.796	0.012	0.112
Children	222.683	1.706	130.499	3.375	0.049	0.101
Error
Parents	2212.556	60.125	36.799
Professionals	3000.896	72.72	41.267
Children	1979.325	51.192	38.665

Table 2.

Post Hoc Analysis With a Bonferroni Adjustment for Each Timepoint and Grouping for the PANDA’s Effect on Perceived Wellbeing. * = Significance result.

Grouping	Comparison		Mean	Std. Error	Sig	95% CI
Grouping	Comparison		Difference	Std. Error	Sig	Lower	Upper
Professionals	Pre	Profile build	−0.779	1.279	1	−3.983	2.424
	Pre	Final	−4.146*	1.542	0.032*	−8.009	−0.283
	Profile build	Pre	0.779	1.279	1	−2.424	3.983
	Profile build	Final	−3.367	1.435	0.073	−6.961	0.228
	Final	Pre	4.146*	1.542	0.032*	0.283	8.009
	Final	Profile build	3.367	1.435	0.073	−0.228	6.961
Parents	Pre	Profile build	−1.111	1.091	0.946	−3.858	1.636
	Pre	Final	−3.957*	1.461	0.031*	−7.636	−0.278
	Profile build	Pre	1.111	1.091	0.946	−1.636	3.858
	Profile build	Final	−2.846	1.501	0.2	−6.626	0.935
	Final	Pre	3.957*	1.461	0.031*	0.278	7.636
	Final	Profile build	2.846	1.501	0.2	−0.935	6.626
Child	Pre	Profile build	−1.905	1.542	0.679	−5.815	2.006
	Pre	Final	−3.79	1.654	0.087	−7.985	0.404
	Profile build	Pre	1.905	1.542	0.679	−2.006	5.815
	Profile build	Final	−1.885	1.127	0.314	−4.743	0.972
	Final	Pre	3.79	1.654	0.087	−0.404	7.985
	Final	Profile build	1.885	1.127	0.314	−0.972	4.743

Table 3.

Greenhouse-Geisser Correction for Overall Significance in the PANDA’s Effect on Neuro-Diverse Symptoms According to Grouping.

Source Grouping	Type III Sum of Squares	df	Mean Square	F	Sig	Partial Eta Squared
Parents	27.463	1.698	16.177	1.077	0.338	0.03
Professionals	40.017	1.765	22.672	1.186	0.307	0.03
Children	17.818	1.43	12.463	0.394	0.609	0.018
Error
Parents	892.537	59.418	15.021
Professionals	1281.983	67.072	19.114
Children	949.515	30.023	31.627

Table 4.

Post Hoc Analysis with a Bonferroni Adjustment for Each Timepoint and Grouping for the PANDA’s Effect on Perceived Symptoms.

Grouping	Comparison		Mean	Std. Error	Sig	95% CI
Grouping	Comparison		Difference	Std. Error	Sig	Lower Bound	Upper Bound
Professionals	Pre	Profile build	−0.49	0.74	1.00	−2.35	1.37
	Pre	Final	0.92	0.99	1.00	−1.57	3.41
	Profile build	Pre	0.49	0.74	1.00	−1.37	2.35
	Profile build	Final	1.41	1.03	0.53	−1.16	3.98
	Final	Pre	−0.92	0.99	1.00	−3.41	1.57
	Final	Profile build	−1.41	1.03	0.53	−3.98	1.16
Parents	Pre	Profile build	1.08	0.65	0.31	−0.55	2.72
	Pre	Final	1.06	0.88	0.72	−1.16	3.27
	Profile build	Pre	−1.08	0.65	0.31	−2.72	0.55
	Profile build	Final	−0.03	0.96	1.00	−2.45	2.39
	Final	Pre	−1.06	0.88	0.72	−3.27	1.16
	Final	Profile build	0.03	0.96	1.00	−2.39	2.45
Child	Pre	Profile build	−0.18	0.96	1.00	−2.68	2.32
	Pre	Final	1.00	1.78	1.00	−3.63	5.63
	Profile build	Pre	0.18	0.96	1.00	−2.32	2.68
	Profile build	Final	1.18	1.44	1.00	−2.56	4.92
	Final	Pre	−1.00	1.78	1.00	−5.63	3.63
	Final	Profile build	−1.18	1.44	1.00	−4.92	2.56

Qualitative Results

Four major themes emerged from the data.

Theme 1: Supporting the System

All participants discussed how the PANDA supported the educational, familial, and personal system.

Increase in Child’s Wellbeing

These were specific changes that either the child, the parent or the professional observed since starting the project. Comments were made on improvement of physical health, with one child mentioning that they have lost some excess “body weight” due to “boxing”, and another child noting that they “don’t argue anymore really” with their parent. Parents also noticed a positive shift in the child’s behaviour, one claiming their child has “been coming home with more stickers” from school.

Empowerment

A key subtheme in empowerment was the concept of feeling listened to. As one teacher mentioned regarding an interaction with a parent -

“I just had one parent that was really grateful that we actually listened to her and believed what she was telling us”

The children also echoed this experience; one teacher believed that a child feels “More listened to and more like somebody’s tried to understand him now.” The children expressed their experience of feeling listened to during this approach and expressed the importance of “every child need[ing] to be in the meeting so they know what’s going on”. This sense of listening also facilitated the empowerment for professionals and families to take control of the support put in place. As one teacher noted -

“I think that they went away and made positive changes at home as well and it wasn’t just what we were doing in school to support their child, but they went home and really thought about what they were doing in their household.”

Useful Materials

The approach’s materials were spoken about frequently. Specifically, two children were able to mention the ease of descriptors this approach had; one described it as “Like a graph to kind of see like what’s actually happening … you could actually see how high or low it is.” Another said, “a lot easier and you can just see [what you] need more help in” Parents also commented on its ease of use, and “thought it was a really nice tool to use. Very easy, it was nice having it all on one page.” and though despite it “take[ing] time … a useful way to spend your time.”.

Theme 2: Psychoeducation

Another theme generated was the usefulness of psychoeducation.

Medical Indoctrination

One persistent sub-theme in psychoeducation was the issue around Medical Indoctrination, and the importance that labels have in society. Many teachers were able to reveal the importance that labels have to families, even after completing the project-

“Some of our parents … still feel that they want a label, and they are still asking for a referral to CAMHS and an ND assessment. Parents don’t seem to understand it and I don’t know if it’s because I’m not explaining it properly because I think it’s great”

This discussion around labels and their importance allowed reflections of the professionals’ experience after labels are received, that many “parents will come back to [the professional] and say, “well all they did was give me a diagnosis”. But further added that “This is why you need to engage in this [PANDA] process … it’s a piece of work and you’ll have an action plan that will help you help your child.”. Interestingly, parents rational for wanting a label was due to it facilitating “some extra support … because it could potentially be that [my child] may struggle in mainstream with his behaviours and may need some more support as time goes on.”

Clarifying Misunderstanding

Many parents and professionals were able to reflect how their assumptions of the child’s behaviour were challenged with this approach. Two examples were present from teachers when commenting on explaining the profile to co-workers were -

“[Co-Workers] suddenly go “oh I didn’t realise that” and they try some of these strategies and they go “oh that’s brilliant that works really well”.

“When I pulled it together into a report, staff have read it and said - “oh so that explains why such and such” and “okay this is what we can do about it”.

One parent mentioned “nightmares and sleeping habits” their child revealed and how this approach allowed them “to identify that this was a problem (and) a challenge for him. Which again I – I perhaps hadn’t thought about but again it’s linked to neurodiversity”.

Positive Environmental Changes

Positive environmental changes were made to support the young people both at home and school because of project participation. One parent commented on how the PANDA helped her to reframe her perspective on her child’s behaviours: “It’s made me stop and think and perhaps with some behaviours not being on it as much from a like a discipline perspective and trying to like understand why”. Teachers in the project also began to change their approach and build a more neurodiversity-supportive classroom: “the more you do something like this the more change will happen” as things become more routine. These positive environmental changes are corroborated by one SENCO who said, “it wasn’t just what we were doing in school to support their child but [parents] went home and really thought about what they were doing in their household”. The positive environment was also felt by the young people, especially “less arguments”: “instead of like, for example, I do something and then like and then [mum] get annoyed at me for it she’ll kind of like talk to me first”.

Theme 3: Comparison to Traditional Pathway

Significant comparisons were made between this approach and the traditional NHS neurodevelopmental pathway at Portsmouth CAMHS, mainly from parents and teachers.

Person Focused Approach

There was significant number of participants comparing the PANDA to assessment and labelling. Some teachers described “the parents were looking at what the child’s actual issues are as opposed to just giving them a label and saying they could have all these things, so I think it’s brilliant” and identifying that the PANDA is “massively looking at the child’s strengths as well”. The approach was often described as holistic, for example “doing it this way … in a more holistic way will give them more support because actually they can focus on the thing that is the issue and we can help them with resources to support that area.”. Also, from a SENCO’s point of view: “it’s quite a nice tool to … looking holistically as an overview of a child”.

Shared Perspective

Perspective sharing through collaboration was a key goal of the approach and improved understanding for all participant groups. From a SENCO’s perspective, “by working with the parents it shows you what we’re doing in school. That was an eye opener for parents to realise what we’re doing, but also the staff to hear what children are like at home”. This is also evident from a parental perspective, one parent “found it very interesting because [school] have put in place specific strategies” to support their child. From a young person’s perspective, being a part of the meetings meant parents and teachers “learnt a bit more about like my personal life and things that I keep to myself”.

Theme 4: Resistance to Change

Parental and teacher resistance to change was one negative aspect of the PANDA which was mainly discussed by professionals. This was particularly present in implementing the PANDA care plan, and it easily being set aside as not an essential part of a child’s care or within the system’s ability to carry out. Many professionals agreed in the focus group that “you’re asking the teachers to make a change they can be a bit resistant.” This resistance was also reflected regarding the attitudes of some of the parents. SENCO’s discussed that “the biggest thing with parents though is I know they haven’t read the information” which meant resources were not implemented at home. Some children also commented on things being “kind of the same” at school and mentioned how they “don’t think” there has been a significant change in teachers’ behaviours.

Discussion

Results from a mix methodology provided positive quantitative data and significant strong medium effect size on wellbeing from the PANDA. The analysis indicates that the PANDA improves the wellbeing of the child from the perspective of the professional, parent and the child. However, there is not enough evidence in this paper to suggest the PANDA has any positive effect on the symptom management of the child. Even so, this study provided a foundation for an evidence based holistic approach for neurodiversity, and information on how the PANDA can be improved for a future version. The study’s data suggests that the core idea of the PANDA providing a holistic framework for the system to engage with is a good starting point. Especially since it builds upon previous research on similar factors having a positive effect on wellbeing in neurodiverse populations (Zhou et al., 2019). However, it is difficult to decipher which part of the PANDA facilitated this effect. This paper can make some suggestions on why wellbeing improved when interpreting the identified themes.

Firstly, the material about neurodiversity tailored for non-professionals allowed for a structured discussion and perspective sharing between parents, educators and the children. This discussion has been viewed as vital for relationship building between the systems, as participants in the study have mentioned how they have felt listened to and understood for the first time. This perspective sharing and listening to each side has been deemed in previous research as a high priority for the neurodiverse community (Clark & Adams, 2020), as it helps fight against the stigmatisation and negative stereotypes that are held by individuals in society.

Secondly, the psychoeducational material enabled better understanding within the system, which will increase empathy towards the child, and decrease stigmatisation. Again, between all groups, each mentioned how due to taking part in the PANDA, they have learnt something new about the child, and have therefore changed their own behaviour to better support the child’s needs. Mirroring previous research, the study supports those increasing problem-solving skills related to the behaviour and supporting them instead of negatively reacting to the behaviour (DaWalt et al., 2018) and reframing will reduce the amount of time individuals remain in a state of confusion waiting for answers (Connolly & Gersch, 2013; Crane et al., 2016).

Thirdly, the PANDA enables a person focused approach, including systemic changes. Participants reflections mentioned how they learnt something new about the child, which also included the child’s interests and what works between the home and school environment. Parties were able to share their experiences and how to best use the child’s strengths to support their weaknesses, mirroring past studies (Cascio et al., 2020; McConkey et al., 2020).

It would be insightful for future research to investigate the content of the profile building discussions, and care plan implementation as it would provide vital insights into the PANDA’S strengths, and future development. Finally, this paper wishes to highlight an interesting pattern within the symptom management data despite its statistical insignificance. The child SDQ scores were between the parents’ and professionals’ scores throughout each of the three meetings, specifically the teacher having a negative bias and parents having a positive bias when compared to the child. However, when examining the pattern between the first and second meeting, the scores of the professionals and parents converged together, closer to the child’s perspective. Even though this convergence was non-significant, it reflects some of the qualitative data of parents and professionals learning something new about the child. Again, this is only a descriptive set of observations, but future research could take extra measurements to examine the perspectives of each member to identify if this occurs again.

Limitations

With the methodology of the study itself, it can be perceived that this pilot has significant limitations. Especially when identifying the age range, the exclusion and inclusion criteria and wide range of symptoms which would be included for the project. Future studies could investigate the PANDA’s effectiveness when controlling for age, gender, symptoms, education.

Conclusions

Overall, the data suggest that PANDA can be an effective approach to improve the perceived wellbeing of the child from the professional, parental and individual’s perspective. This is likely to be due to the holistic discussion and accessibility of the material. It is possible for it to serve as an initial assessment and intervention in a stepped-care model by providing information and guiding participants in need of a more individualized treatment. The accomplishment of the approach’s effect on wellbeing would not have been as successful without the co-produced model when being created. More research is required to gain specific information on the strengths and limitations of the PANDA, especially when it comes to the observable impact on the behaviour, coping mechanisms and problem-solving skills in everyday life.

Footnotes

Acknowledgements

Line Manager - Nigel Sampson. Thank you for assisting in my integration into Solent NHS Trust, and your continuing support for further training and respect you show to me on a regular basis. You have truly been one of the most supportive managers I have had in my career who always fought for my personal development. Clinical Supervisor – Dr Kate Benham. Thank you for taking time out of your busy work schedule to support my own professional development. The opportunities you have provided have been incredibly vital to reflect on my position in society, with my clients and how I conduct my own therapeutic practice. Though you were not officially part of this project, I still wish to acknowledge your influence on me. Due to your mentoring, I witness a shift in how I think about evidence based psychological practices and the public system at large. This did not just inform this research but also the project may be implemented in the system. Psychology Placement Student – Isobel Horsfall Turner. Though your name is already on the paper, I still wish to take the time to thank you for all the hard work you have completed for this project. It can’t be underestimated how important your position was, with data collection, transcribing and report editing. I am not only keeping my promise to have your name on the paper, but I am also incredibly proud to have my name next to yours. I witnessed an incredible amount of growth in your research and therapeutic skills during project, and I am sure that whatever you decide you want your career to be, you have the skills and intelligence to take you there. Portsmouth Parent Voice - Elise Meyer. Portsmouth Parent Voice has been a vital ally in educating and advocating for neurodevelopmental conditions and the parental/carer experience with the NHS system. I hope to see their charity grow and continue to advocate for parents’ voices in the future. Elise Meyer has continuously been a grounding colleague for this project, displaying the importance of co-production within the NHS. She has taught me so much about the importance of service user experience, and to always keep them in mind. I only hope to continue with this nugget of knowledge as I continue to grow in my career. Dynamite - Joe McLeish and Carly Blake. Dynamite provides an excellent perspective of neuron-diverse individuals and suggesting changes to the system at large. I wish to see their charity grow and continue to inform how professionals and parent/carers continue to work with neuro-diverse individuals. Special thanks to Joe McLeish and Carly Blake, for providing weekly updates with a wide variety of perspectives, and their own insight on their experience with Portsmouth Institutions. Jonathan Prosser. Now Chief Clinical Information Officer pushed for a neurodiverse approach within Portsmouth CAMHS and who continues to advocate for more inclusive and thought-provoking ideas within the Trust. Dr Colin Barnes Clinical Effectiveness and Improvement Manager of Solent NHS trust, who mentored and supervised the author of this paper through the methodology creation and ethical application. I have personally learnt a lot from your research mentoring and will continue to use this knowledge in my future career. Liz Robinson Principle Educational Psychologist, who helped facilitate the educational community’s involvement with the project. Without your leadership and activism, the engagement with the approach would not have achieve such a high level of success as it did.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical considerations

The feasibility of the Neuro-Diversity Approach was evaluated as an open within-group trial as a potential step pre-referral to Portsmouth’s Child and Adolescent Mental Health Service (CAMHS). Participants provided written consent, or consent via parents, and the study was approved by the UK’S National Health Service’s (NHS) Research Ethics Committee (IRAS-287858).

ORCID iD

Zach D Dunn

Author biographies

Zach Dunn is a Trainee Clinical Psychologist at Manchester University. Educationally he has completed a MSc in Cognitive Neuroscience and a BSc in Psychology. He has over 7 years of clinical experience from a range of clinical populations, including neurodiversity, Brain Injury, CMHD, and Trauma.

Asha is a Consultant Child and Adolescent Psychiatrist in Portsmouth. She has worked in the field of Child and Adolescent Psychiatry for more than a decade. She is the Lead Psychiatrist and clinician in the service. Asha is passionate about working with children with neurodevelopmental differences and is the lead for the Neurodevelopmental Disorders pathway in Portsmouth. She actively collaborates with the local authority, parent representatives, paediatricians and education in supporting the needs of these individuals. In recognition of her work, Asha was granted Fellowship of the Royal College of Psychiatrists in 2019.

Isobel C Horsfall Turner was a Bsc Psychology placement student from Portsmouth University for Solent NHS Trust during the Neurodiversity research project. She is currently working towards an Msc in Clinical Psychology.

References

Abbott

Bernard

Forge

(2013). Communicating a diagnosis of autism spectrum disorder–A qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3), 370–382. https://doi.org/10.1177/1359104512455813

Anckarsäter

(2010). Beyond categorical diagnostics in psychiatry: Scientific and medicolegal implications. International Journal of Law and Psychiatry, 33(2), 59–65. https://doi.org/10.1016/j.ijlp.2009.12.001

Bai

Yip

B. H. K.

Windham

G. C.

Sourander

Francis

Yoffe

Glasson

Mahjani

Suominen

Leonard

Gissler

Buxbaum

J. D.

Wong

Schendel

Kodesh

Breshnahan

Levine

S. Z.

Parner

E. T.

Hansen

S. N.

Sandin

(2019). Association of genetic and environmental factors with autism in a 5-country cohort. JAMA Psychiatry, 76(10), 1035–1043. https://doi.org/10.1001/jamapsychiatry.2019.1411

Baker

D. L.

(2011). The politics of neurodiversity: Why public policy matters. : Lynne Rienner Publishers.

Baron-Cohen

(2017). Editorial Perspective: Neurodiversity–a revolutionary concept for autism and psychiatry.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Cascio

M. A.

Weiss

J. A.

Racine

the Autism Research Ethics Task Force (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities. Autism: The International Journal of Research and Practice, 24(7), 1676–1690. https://doi.org/10.1177/1362361320918763

Charlton

J. I.

(1998). Nothing about us without us. University of California Press.

Clark

Adams

(2020). Listening to parents to understand their priorities for autism research. PloS One, 15(8), e0237376. https://doi.org/10.1371/journal.pone.0237376

10.

Connolly

Gersch

(2013). A support group for parents of children on a waiting list for an assessment for autism spectrum disorder. Educational Psychology in Practice, 29(3), 293–308. https://doi.org/10.1080/02667363.2013.841128

11.

Crane

Batty

Adeyinka

Goddard

Henry

L. A.

Hill

E. L.

(2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1

12.

Crane

Chester

J. W.

Goddard

Henry

L. A.

Hill

(2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism: The International Journal of Research and Practice, 20(2), 153–162. https://doi.org/10.1177/1362361315573636

13.

Dahl

Ramakrishnan

Spears

A. P.

Jorge

Bigio

N. A.

Chacko

(2020). Psychoeducation interventions for parents and teachers of children and adolescents with ADHD: A systematic review of the literature. Journal of Developmental and Physical Disabilities, 32(2), 257–292. https://doi.org/10.1007/s10882-019-09691-3

14.

DaWalt

L. S.

Greenberg

J. S.

Mailick

M. R.

(2018). Transitioning together: A multi-family group psychoeducation program for adolescents with ASD and their parents. Journal of Autism and Developmental Disorders, 48(1), 251–263. https://doi.org/10.1007/s10803-017-3307-x

15.

Doyle

(2020). Neurodiversity at work: A biopsychosocial model and the impact on working adults. British Medical Bulletin, 135(1), 108–125. https://doi.org/10.1093/bmb/ldaa021

16.

Duncan

B. L.

Miller

S. D.

Sparks

J. A.

Claud

D. A.

Reynolds

L. R.

Brown

Johnson

L. D.

(2003). The Session Rating Scale: Preliminary psychometric properties of a “working” alliance measure. Journal of Brief Therapy, 3(1), 3–12.

17.

Evans

(2013). How autism became autism: The radical transformation of a central concept of child development in Britain. History of the Human Sciences, 26(3), 3–31. https://doi.org/10.1177/0952695113484320

18.

Falissard

(2021). Did we take the right train in promoting the concept of “Neurodevelopmental disorders”?.

19.

Fletcher-Watson

Brook

Hallett

Murray

Crompton

C. J.

(2021). Inclusive practices for neurodevelopmental research. Current Developmental Disorders Reports, 1–10.

20.

Gibbs

Beckmann

J. F.

Elliott

Metsäpelto

R. L.

Vehkakoski

Aro

(2020). What’s in a name: The effect of category labels on teachers’ beliefs. European Journal of Special Needs Education, 35(1), 115–127. https://doi.org/10.1080/08856257.2019.1652441

21.

Gibbs

Elliott

(2015). The differential effects of labelling: How do ‘dyslexia’and ‘reading difficulties’ affect teachers’ beliefs. European Journal of Special Needs Education, 30(3), 323–337. https://doi.org/10.1080/08856257.2015.1022999

22.

Griffith

G. M.

Walker-Jones

Fitzpatrick

Goodson

Pickering

Wimpory

Hastings

R. P.

(2013). Receiving an assessment and a potential diagnosis on the autism spectrum: A thematic content analysis of parental experiences. Good Autism Practice (GAP), 14(2), 59–68.

23.

Hens

Robeyns

Schaubroeck

(2019). The ethics of autism. Philosophy Compass, 14(1), Article e12559. https://doi.org/10.1111/phc3.12559

24.

Kapp

S. K.

Gillespie-Lynch

Sherman

L. E.

Hutman

(2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71. https://doi.org/10.1037/a0028353

25.

Kenny

Hattersley

Molins

Buckley

Povey

Pellicano

(2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: The International Journal of Research and Practice, 20(4), 442–462. https://doi.org/10.1177/1362361315588200

26.

Leadbitter

Buckle

K. L.

Ellis

Dekker

(2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12, 635690. https://doi.org/10.3389/fpsyg.2021.635690

27.

Legg

Tickle

(2019). UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence. Autism: The International Journal of Research and Practice, 23(8), 1897–1910. https://doi.org/10.1177/1362361319841488

28.

McConkey

Cassin

M. T.

McNaughton

(2020). Promoting the social inclusion of children with ASD: A family-centred intervention. Brain Sciences, 10(5), 318. https://doi.org/10.3390/brainsci10050318

29.

Muris

Meesters

van den Berg

(2003). The Strengths and Difficulties Questionnaire (SDQ)-further evidence for its reliability and validity in a community sample of Dutch children and adolescents. European Child & Adolescent Psychiatry, 12(1), 1–8. https://doi.org/10.1007/s00787-003-0298-2

30.

Niner

Portman

(2021). Ambitious about co-production. COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice, 43.

31.

Norbury

C. F.

Sparks

(2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology, 49(1), 45–58. https://doi.org/10.1037/a0027446

32.

Potter

C. A.

(2017). ‘I received a leaflet and that is all’: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45(2), 95–105. https://doi.org/10.1111/bld.12179

33.

Riccio

Kapp

S. K.

Jordan

Dorelien

A. M.

Gillespie-Lynch

(2021). How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism? Autism: The International Journal of Research and Practice, 25(2), 374–388. https://doi.org/10.1177/1362361320958214

34.

Shaw

(2021). I don’t suffer from ADHD, I suffer from other people”: ADHD, stigma. And academic life.

35.

Singer

(1999). Why can’t you be normal for once in your life? From a problem with no name to the emergence of a new category of difference. Disability Discourse, 59–70.

36.

Van Wijngaarden-Cremers

P. J.

van Eeten

Groen

W. B.

Van Deurzen

P. A.

Oosterling

I. J.

Van der Gaag

R. J.

(2014). Gender and age differences in the core triad of impairments in autism spectrum disorders: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 44(3), 627–635. https://doi.org/10.1007/s10803-013-1913-9

37.

Zhou

Yin

Wang

(2019). The effect of family-focused psychoeducational therapy for autism spectrum disorder children's parents on parenting self-efficacy and emotion. Archives of Psychiatric Nursing, 33(1), 17–22. https://doi.org/10.1016/j.apnu.2018.08.002

The viability of a proposed psychoeducational neurodiversity approach in children services: The PANDA (the Portsmouth alliance’s neuro-diversity approach)

Abstract

Keywords

Introduction

Modelling Neurodevelopmental Conditions

Concept of Neurodiversity

Supporting Neurodiversity

Factor 1 - Psychoeducation

Factor 2 – Professional Relationships

Factor 3 – Early Support

Methods

Recruitment process and enrolment of participants

Participants

Inclusion and exclusion criteria

Treatment fidelity

Procedure

Protocol

Focus Groups

Interviews

Materials

(Child) Outcome Rating Scale

Strength and Difficulty Questionnaire

Quantitative Analysis

Qualitative Analysis

Results

Quantitative Results

Qualitative Results

Theme 1: Supporting the System

Increase in Child’s Wellbeing

Empowerment

Useful Materials

Theme 2: Psychoeducation

Medical Indoctrination

Clarifying Misunderstanding

Positive Environmental Changes

Theme 3: Comparison to Traditional Pathway

Person Focused Approach

Shared Perspective

Theme 4: Resistance to Change

Discussion

Limitations

Conclusions

Footnotes

Acknowledgements

Declaration of conflicting interests

Funding

Ethical considerations

ORCID iD

Author biographies

References