Article Text

Original research
A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities
  1. Jeremy Parr1,2,
  2. Sarah Wigham1,
  3. William Farr3,
  4. Ian Male3,4,
  5. Lucy Isard1,
  6. Rhianna Lees1,
  7. Venkat Reddy5,
  8. Gráinne Saunders6,
  9. Victoria Grahame2
  1. 1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
  2. 2 Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK
  3. 3 Sussex Community NHS Foundation Trust, West Sussex, UK
  4. 4 Paediatrics, Brighton and Sussex Medical School, Brighton, UK
  5. 5 Cambridgeshire and Peterborough NHS Foundation Trust, Peterborough, UK
  6. 6 Trainer for NHS health system Expert Parent Programme, Sussex, UK, Sussex, UK
  1. Correspondence to Jeremy Parr; jeremy.parr{at}ncl.ac.uk

Abstract

Background The UK National Health Service (NHS) Long Term Plan aims to reduce waiting times for childhood autism diagnostic assessment and improve parent and child satisfaction. This empirical research investigated current childhood diagnostic practice provision, and changes made by teams to address challenges faced.

Methods Data were collected using an online semi-structured research questionnaire. UK childhood autism diagnostic assessment services (for children aged 1–18 years) were invited to participate through multidisciplinary clinical networks, special interest groups and professionals mailing lists. The study was on the National Institute for Health Research Clinical Research Network portfolio.

Results 128 clinicians from diverse NHS services responded including: 10 (8%) integrated services, 46 (36%) Child and Adolescent Mental Health Services (CAMHS) and 72 (56%) paediatric services. A minority of services (23, 17.9%) reported always meeting the National Institute for Health and Care Excellence guidance for assessment. Referrals rose 115% between 2015 and 2019. Clinicians described increased child and family complexity compared with previously; children had more co-occurring physical, mental health and neurodevelopmental conditions and there were more frequent family health problems and safeguarding concerns. Most services (97, 75.8%) reported recent funding stayed constant/decreased. Incomplete multidisciplinary teams (MDTs) were frequently reported; a minority of services reported increased availability of professionals, and some experienced reductions in key professionals. Many teams were unable to undertake assessments or make recommendations for associated neurodevelopmental and co-existing conditions. Teams described improvement strategies implemented (eg, adapting professionals’ roles, supporting parents).

Conclusions Most UK autism paediatric and CAMHS diagnostic teams experience significant challenges affecting the assessment of children with possible autism, and recommendations regarding treatment/intervention. Where CAMHS or paediatric services work in isolation, there are often competency gaps in MDTs and ability to deliver full neurodevelopmental and mental health assessments. Teams identified service improvement strategies; however, investment in MDT expertise is required to enable services to implement changes to meet the needs of children and families.

  • autism
  • child psychiatry
  • data collection
  • health services research

Data availability statement

Data are available on reasonable request. Some data that support the findings of this study are available on reasonable request from the corresponding author. Data about services provided by named NHS Trusts will not be shared.

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WHAT IS ALREADY KNOWN ON THIS TOPIC

  • Waiting times for childhood autism diagnostic assessments are longer than recommended in UK national guidance causing parent and child dissatisfaction.

WHAT THIS STUDY ADDS

  • UK autism teams reported increasing numbers of referrals and assessments, increased child and family complexity as well as a rise in co-occurring physical, mental health and neurodevelopmental conditions.

  • Safeguarding concerns were more commonly reported than before.

  • Additionally, many teams were unable to meet the National Institute for Health and Care Excellence (NICE) guidance.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

  • The study findings highlight that the Child and Adolescent Mental Health Services and paediatric services completing childhood autism assessment and diagnosis work independently of each other.

  • This means that their multidisciplinary teams (MDTs) commonly lack the resources and capacity to deliver high-quality and thorough NICE-compliant autism assessments.

  • The study identified opportunities that have been used to change provision, addressing challenges faced by diagnostic teams, for example, to improve the timeliness and validity of childhood autism diagnostic assessments.

  • Some of the innovative practices described can be used to support clinical service developments required to enable teams to meet recent UK guidance and similar international initiatives.

  • The findings are relevant to international policymakers, clinicians and parents, and can inform future development of childhood autism diagnostic services and clinical guidance recommendations.

Introduction

UK National Health Service waiting times for childhood autism diagnostic assessments in paediatric and Child and Adolescent Mental Health Services (CAMHS) are longer than recommended in national guidance.1–3 This is a cause of parent and child dissatisfaction.4 International studies from New Zealand, Canada and the USA describe similar challenges accessing diagnostic assessment and interventions for co-existing conditions, alongside insufficient parent support.5–11

Timely diagnosis reduces parent stress and facilitates understanding a child’s strengths and difficulties and accessing appropriate ongoing support.12 The UK NHS Long Term Plan (2019) aims to reduce waiting times3; however, few models of practice describe how to accomplish this.13 In Scotland, a new diagnostic pathway led to reduced waiting lists in one health board.14 Other potential international solutions include pre-appointment information gathering,15 single practitioner assessments,16 17 holistic profiling18 and better cordination of health and education pathways.19 Increased joint working between paediatric and CAMHS professionals/teams facilitates efficient and holistic assessments, for example, avoiding repeat assessments for children with suspected autism and attention deficit hyperactivity disorder (ADHD),20 which is important as co-existing conditions are common in children with autism.21 22

The UK National Institute for Health and Care Excellence (NICE) publishes clinical guidance (CG) and quality standard (QS) recommendations for evidence-based best practice for recognition, referral and diagnosis of autism spectrum disorder in children (CG128 and QS51).1 2 NICE CG and QS recommend an MDT assessment, use of structured assessments and that teams have the competencies to assess neurodevelopmental, physical and mental health conditions in children undergoing autism diagnostic assessment.1 2

This study is one component of a UK national programme of research: A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD). The programme comprised (i) a literature review13; (ii) the survey of UK autism diagnostic team clinicians and (iii) in-depth case studies involving interviews with children, families and practitioners.23 We report here the findings from the national survey of paediatric and CAMHS teams on challenges faced by services, and compare service provision, challenges faced and solutions used. The survey aimed to identify: (i) barriers to provision of timely and valid autism assessment and diagnosis services, (ii) variations in assessment and diagnostic service provision across paediatric and CAMHS settings and (iii) adaptations to provision that have been made to improve services.

Method

Data collection was by cross-sectional online survey. There is no central professional or NHS organisational record of numbers of UK autism diagnostic teams and snowball sampling facilitated participant recruitment. UK childhood autism diagnostic assessment services (for children aged 1–18 years) were invited to participate through the British Academy of Childhood Disability, British Association of Community Child Health, Royal College of Psychiatrists, multidisciplinary clinical networks, special interest groups and professionals mailing lists for those working in childhood autism assessment and diagnosis teams (June–November 2020). Reminders were sent via teams; teams were encouraged to contact other teams they knew and let them know about the study; the Clinical Research Network supported recruitment. One multidisciplinary clinician from each service completed the survey.

The non-validated survey questionnaire was semi-structured with open/closed response options. Part 1 covered (i) service setting (16 questions); (ii) diagnostic service and NICE guidance (3 questions); (iii) referral/pre-assessment (4 questions); diagnostic assessment and conclusions (15 questions) and (v) recommendations (1 question). Part 2 comprised 10 questions on adaptations services had made, or would like to make to address challenges; participants were encouraged to report effectiveness of adaptions.

The survey was distributed and completed online using survey software (Qualtrics). Participants accessed the survey link on completion of informed consent. Reminder emails were sent to maximise response.

Data were analysed using descriptive statistics. Pearson’s χ2 test of difference were used to analyse categorical responses.24 Open-text survey responses used content analysis, which involved familiarisation with data, preliminary identification of codes and developing a coding frame. A section of data was coded to inform development and refining of the coding frame during an iterative process prior to coding the whole dataset.25 Inter-rater reliability was assessed for 10% of the data with an agreement threshold (≥80%).

Patient and public involvement and engagement

The survey was developed by parents, clinicians and academic partners (online supplemental appendix 1). Parents and representatives from parent support organisations co-designed the funding application and study methods.

Supplemental material

Results

Responses were received from 128 UK NHS teams including 46 CAMHS (36%), 72 paediatric services (56%) and 10 integrated services (8%); 113 (88%) responses were from teams in England, 9 in Scotland, 4 in Northern Ireland and 2 in Wales. Eighty-four services covered mixed urban/rural areas (65.6%); 36 urban (28.1%) and 8 rural (6.3%). Limited results from the 10 integrated services are presented due to the small number of responders.

As expected, the age range of children seen varied between services. All paediatric teams assessed children aged ≤4 years (72, 100%). Sixteen paediatric teams (22.2%) assessed children aged 0–8 years, and 56 teams (77.7%) assessed children up to age 18 years. Almost all CAMHS teams assessed young people aged 8–18 years (45, 97.8%). Twenty-two CAMHS teams (47.8%) saw children aged ≤4 years and 24 (52.1%) assessed children aged 5–7 years.

Referrals and assessments

Table 1 clearly shows substantial increases in the median number of children referred to and assessed through autism diagnostic pathways each year from 2015 to 2019. Thirty-one teams reported data from 2015 and 2019, with referrals rising from 140 in 2015 to 301 in 2019 (a 115% increase). The number of completed assessments reported by 34 teams rose from 119 to 200 over the same period (a 68% increase). Paediatric and CAMHS teams’ estimates showed no difference in the proportion assessed and given autism diagnoses (76% paediatrics, 75% CAMHS). 2019/20 waiting times to first assessment for children referred to paediatrics and CAMHS was similar (9 months, n=61 and 10 months, n=42, respectively). Based on the available data (26 teams), there was no evidence of an increase in waiting times between 2017 and 2019.

Table 1

Number of children referred to and assessed by teams between 2015 and 2019

Prediagnostic assessment information collected

Twenty-eight (38.9%) paediatric and 34 (73.9%) CAMHS teams used screening measures for co-occurring conditions. More than 80% of teams collected reports from other professionals who knew the child. Only 19 (26.4%) paediatric and 19 (41.3%) CAMHS teams gathered reports from others who knew the child (eg, teachers, sports coaches) (online supplemental table S1). Most services thought collecting pre-assessment information was useful (117, 91.4%), as it improved assessment speed (89, 69.5%), quality (109, 85.2%) and satisfaction (101, 78.9%) with the assessment, and aided in the identification of co-existing conditions (100, 78.9%).

Meeting NICE guidance

Only a minority of teams (23, 17.9%) reported always being able to meet NICE diagnostic assessment guidance; 86 (67.2%) teams reported that it was possible to meet NICE guidance most of the time or always (table 2). Some teams rarely or never met individual NICE QS, for example, providing a key worker to coordinate the care and support detailed in personalised plans (paediatrics, 59.8%; CAMHS 32.6%). Only half of teams always assessed children with autism and behaviours that challenge for possible triggers, including physical and mental health conditions and environmental factors. One-third of teams rarely or never offered families a discussion about psychosocial interventions (paediatrics, 37.5%; CAMHS 23.9%).

Table 2

Meeting NICE guidance and quality standard

Diagnostic assessment and conclusions

Most paediatric and CAMHS assessment services had a defined multidisciplinary team (MDT) (105; 88.9%); however, MDT composition differed significantly between paediatric and CAMHS teams (table 3). As expected, paediatric core teams were more likely than CAMHS to have a paediatrician (70 vs 11: χ2 (3) = 60.25, p=0.000) and a speech and language therapist (62 vs 21: χ2 (2)=14.009, p=0.001). Core CAMHS teams were more likely than paediatrics to have a psychologist (40 vs 32: χ2 (2)=9.357, p=0.009), assistant psychologist (28 vs 8: χ2 (3)=15.69, p=0.001) and a psychiatrist (31 vs 7: χ2 (3)=20.43, p=0.000). Only two-thirds of CAMHS teams included a psychiatrist in the core team (67.4%). A minority of teams had occupational therapists (21 paediatrics vs 16 CAMHS teams: χ2 (2)= 0.832, p=0.66).

Table 3

Professional disciplines who are members of the autism spectrum diagnostic assessment team; and whether over the last 5 years the amount of these professionals’ time in the team increased, decreased or stayed the same

While a minority of services reported an increase in available professionals over the last 5 years, the number of professionals in most teams remained unchanged (table 3). Surprisingly, some teams experienced a reduction in key professionals. Most paediatric and CAMHS teams had no representation from a person with lived experience of autism (76.3% vs 56.5%, respectively).

There was considerable variation in assessment methods used, and the use of standardised measures/tools (online supplemental tables S2–3). Few teams used standardised autism history taking tools (38.8% paediatrics vs 58.6% CAMHS); most teams had access to use of the Autism Diagnostic Observational Schedule where needed (fewer in paediatrics than CAMHS). There was a striking between-service difference in the proportion of children receiving physical examinations, or investigations (paediatrics: 41, 56.9%; CAMHS: 5, 10.9%: χ2 (2)=24.90, p=0.001). Most CAMHS (39, 84.7%) reported not undertaking physical investigations such as genetic screening with many or most of the children.

A third of teams (46, 35.9%) reported greater complexity associated with the children/young people requiring assessment compared with 5 years ago. Complexity was defined as additional characteristics that practitioners needed to consider during autism assessment and diagnosis, including the presence of co-occurring physical, mental health and neurodevelopmental conditions, safeguarding concerns, family health problems, disagreements between health professionals and parents or children being home schooled. Complexity had increased in many specific areas including the possible presence of one or more neurodevelopmental disorders (89, 69.5%), suspected or diagnosed mental health condition(s) (84, 65.6%) and discussion of pathological demand avoidance (68, 53.1%) (online supplemental table S4).

There were significant differences between services in assessing for, diagnosing or making recommendations for neurodevelopmental and co-existing conditions (table 4). In many areas, the ability to make diagnoses and recommendations followed MDT expertise and clinical setting, for example, paediatric teams were more likely to make diagnoses and recommendations around disordered development, developmental language disorder and developmental coordination disorder; and CAMHS teams were more likely to complete assessments and recommendations for intellectual/learning disability, ADHD and mental health conditions. Many teams needed to make onward referrals for assessments.

Table 4

Teams’ ability to (i) assess and diagnose other conditions and (ii) make initial recommendations about how to manage autism characteristics and/or address/treat other neurodevelopmental diagnoses or co-existing conditions

Despite increase in demand, only 38 teams (32.2%) reported service funding had increased over the past 5 years while most reported funding stayed constant (63, 53.4%) or decreased (17, 14.4%).

Adaptations to improve services

Teams reported adaptations within current resources to address challenges, and to improve diagnostic assessment and identification of co-existing conditions (online supplemental table S5). Ninety teams (70.3%) had improved ways to obtain good quality information at referral, for example, questionnaires from parents or education settings. Fifty-eight teams (43.9%) had introduced use of digital technology, that is, computerised systems/software. Participants reported the effectiveness of adaptations (online supplemental table S6), describing benefits from increasing support for families, broadening assessment disciplines/skill mix, a single pathway to consider autism spectrum disorder and ADHD and reducing the amount of assessment if there is sufficient evidence for earlier diagnosis and recommendations.

Teams most frequently commented that with additional resources (table 5), they would increase specialist MDT expertise (paediatrics: 60, 83%; CAMHS: 21, 45.7%); and provide more support before, during and after assessment (paediatrics: 29, 40.2%; CAMHS: 23, 50%). A third of teams thought increased resources could reduce waiting lists and improve timeliness (paediatrics: 27, 37.5%; CAMHS: 15; 32.6%). A quarter of teams would expand their team and capacity to complete more assessments (larger premises, increased professional time) (paediatrics: 17, 23.6%; CAMHS: 12, 26.1%). Teams would also increase joint working (paediatrics: 12, 16.7%) and conduct more holistic assessments including for co-existing conditions (CAMHS: 9, 19.6%).

Table 5

Potential improvements in diagnostic assessment services for children with possible autism spectrum disorder with increased resources

Discussion

This large empirical study explored delivery of UK childhood autism assessment and diagnostic services. The study adds substantially to previous research by reporting for the first-time data on services’ compliance with NICE guidance and comparing paediatric and CAMHS teams on service provision and challenges faced. The study gathered data on the characteristics of contemporary UK childhood autism diagnostic assessment services, including access to resources and expertise, numbers of children referred and what clinical services and practitioners are able to offer children and families. The study shows high variability between services, on key characteristics that lead to good practice.

Teams reported substantially increased referrals and assessments each year since 2015, greater complexity of children and families, gaps in MDT professionals and expertise and most had received no increase in funding. In combination, this meant most teams were unable to complete autism assessments in a timely manner, many were unable to offer assessments in accordance with NICE guidance and most were unable to complete additional assessments associated with neurodevelopmental and co-existing conditions commonly seen with autism.8 21

Research suggests gathering pre-appointment information is one solution to improve diagnostic processes, speed up assessment and reduce waiting lists.15 While fewer than half of teams said they completed school or home visits, our findings show teams gathered information using a wide range of other methods, for example, referral templates, written reports from educational professionals, information from organisations set up to support children on the waiting list. Teams viewed collection of pre-appointment information as beneficial to the assessment process, improving quality and satisfaction.

Despite some teams being mostly or always NICE compliant, most teams struggled to conduct assessments that fully met NICE guidance recommendations and QS. Previous research highlights international variability in guidance recommendations for childhood autism diagnostic assessment, including whether an MDT assessment is required in all cases.26 Some have suggested ‘frontloading’ expertise27 with a single professional assessment, progressing to a consensus diagnostic evaluation for complex cases.17 Overall fewer than 40% of teams in our study said it was possible to meet UK NICE CG all the time. Our findings showed teams’ ability to meet NICE guidance and QS varied depending on which clinical pathway children accessed their autism assessment. For example, NICE guidance recommends assessing children for co-existing physical and mental health conditions, however, paediatrics core teams had limited access to psychiatrists, and CAMHS core teams had limited access to paediatricians. This can contribute to inequity in service provision and barriers to accessing assessments and diagnoses for co-occurring health conditions. For example, anxiety commonly co-occurs with autism,8 but we found that most paediatrics teams were unable to diagnose or make recommendations regarding anxiety or would refer onwards. Few CAMHS teams offered assessments for co-occurring physical health conditions. Most paediatric teams were unable to make diagnoses of suicidality or self-harm. Children and families may experience further delays in the assessment and diagnosis process and reduced continuity of care when/if there are transitions between paediatrics and CAMHS services regarding co-occurring conditions. Most integrated teams were able to meet the NICE QS to offer assessments for co-existing physical and mental health problems, however, this finding may not be representative of all integrated teams given the small number recruited (n=10); most UK childhood autism assessment and diagnosis services are not currently organised in an integrated way.

Fewer than half of the teams were able to offer families opportunities to access psychosocial interventions, or provide a key worker to co-ordinate personalised plans. Around half of the teams reported that with extra resources they would provide more support before, during and after the assessment, showing teams remain motivated to provide support and intervention for children and families.

Some professionals led services that were able to provide comprehensive services; many professionals reported frustration with their capacity to improve services, despite efforts to do so. These findings indicate that additional resources (funding, increased MDT personnel), training and improved expertise/skill mix are needed now, and in the future, to build capacity to deliver the high-quality services that professionals desire, and children and parents require. Previous studies of Child Development Teams and Autism Diagnostic services have shown the challenges faced by teams regarding MDT availability and service provision.28 29 This recent study highlights that many challenges persist. In accordance with previous research,15 families continue to wait an unacceptably long time for assessment,3 which may or may not be as comprehensive as required. This causes dissatisfaction to families and clinicians.4 Despite this, resources have not increased for many teams and there has been a reduction for some.

The MDT in paediatrics and CAMHS broadly dictated assessments that were undertaken, and recommendations made. The challenges for CAMHS to provide required medical assessments recommended by NICE was notable. Many teams were able to offer an excellent service with each of the professionals recommended by NICE represented in their core teams. However, some clinicians reported declining or static investment, or only investment for less qualified or less expensive staff, for example, nursery nurses, while opportunities for service development and gaps in professional time in the team were evident. Previous research suggests reducing professional clinical time may improve pathway efficiency but abbreviated/fast-tracked assessments may be less holistic and fail to address co-existing conditions.14 16 17

The survey findings show that teams are managing increasingly complex referrals. Previous research findings demonstrate children with complex presentations and additional diagnoses, for example, ADHD, are diagnosed later than those without.12 Integrating paediatric and CAMHS services to deliver a neurodevelopmental pathway recognising co-occurring difficulties with social communication and hyperactivity, rather than separate pathways (autism/ADHD) may improve efficiency but there may be barriers to implementation.20 30–32

Although the number of integrated services in the study was small, limiting comparisons, there was some evidence that teams were able to mostly or always meet NICE guidance; integrated services are more likely to have a broader MDT skill mix and capacity to undertake comprehensive assessments and make recommendations for support/interventions/treatments indicated.20

Regarding limitations, there was limited access to older records (data from 2015 to 2019), showing continued need for improved service data collection.14 Survey data on the proportion of children referred and assessed who went on to receive a diagnosis was limited. While many responses were received, there was no information on the number of teams approached to participate and neither professional nor NHS organisations know the number of UK autism diagnostic teams. However, it seems unlikely that there was systematic bias in England; fewer responses were received from other UK countries. The survey was designed prior to the COVID-19 pandemic but conducted during 2020. This may have reduced response rates from teams and explain description of expedited adoption of digital technology solutions to facilitate socially or geographically distanced assessment.33 Some clinicians had changed their service in an effort to improve assessments and reported the success of adaptations. Many identified adaptations cost little; however, some require investment of funds and training (eg, digital technologies).34 It was evident that innovative teams introduced a number of changes, rather than a single ‘one-size-fits-all’ solution. Respondents described changes they would like to make with more resources (eg, improve timeliness) and innovative approaches. The findings demonstrate the requirement for identifying flexible models of working effectively and efficiently within children’s autism assessment and diagnostic services.14 The research programme built on the survey findings by conducting case studies of autism diagnostic assessment services including interviews with children and families to identify effective approaches to reduce waiting times, and deliver high-quality, comprehensive diagnostic assessments.

Conclusion

This is the first study to explore challenges to compliance with NICE guidance in UK childhood autism assessment and diagnosis services. The study findings highlight that CAMHS and paediatric services mostly work independently of each other to complete childhood autism assessments, and MDTs often lack the resources capacity to deliver high-quality and thorough NICE-compliant autism assessments. The study also identified opportunities for change to address challenges faced by diagnostic teams and improve timeliness and validity of childhood autism diagnostic assessments. These findings are relevant for UK and international policymakers, commissioners, clinicians and parents. Some innovative practices described are being used to support clinical service developments to meet the goals of the NHS Long Term Plan, recent guidance and similar international initiatives.35–37 The findings can also be used to inform service development and updates to UK NICE CG and QS for childhood autism assessment and diagnosis services and pathways.

Data availability statement

Data are available on reasonable request. Some data that support the findings of this study are available on reasonable request from the corresponding author. Data about services provided by named NHS Trusts will not be shared.

Ethics statements

Patient consent for publication

Ethics approval

This study was approved by the Health Research Agency and Health and Care Research Wales (20/HRA/1397) on 9 June 2020, with data collection open until 30 December 2020. Participants accessed the survey link on completion of informed consent.

Acknowledgments

This study is one work package from a national programme of research: A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD). We are grateful to NHS England for funds derived from the child and young person mental health transformation funding stream, via the Learning Disability and Autism Directorate and the study participants and community advisors. The Re-ASCeD consortium has combined academic skills in autism, service delivery research and health economics, with the clinical experience of those delivering frontline NHS autism diagnostic services, and those with lived experience, either as parents or in running local or national representative organisations (Autistica, Council for Disabled Children, West Sussex Parent Carer Forum). We would like to thank and acknowledge all members of the consortium not named as authors: Professor Patricia Wilson, Dr Vanessa Abrahamson, Dr Wenjing Zhang (University of Kent); Professor Heather Gage, Peter Williams (University of Surrey); Amanda Allard, Pamela Shaw, Joanna Carr (Council for Disabled Children); Dr Lorcan Kenny, Ned Redmore, (Autistica), Hannah Terrell, Sophie McGrevey (Sussex Community NHS Foundation Trust) as well as members of our Expert/External Advisory Group and parent groups for their comments on the research findings (and to Professor Ann Le Couteur for comments on survey design and content); the Clinical Research Network (CRN) (particularly Helen Membrey of Kent Surrey and Sussex LCRN) for encouraging completion of the questionnaire by teams; to Helen Vaughan at the research Sponsor Sussex Community NHS Foundation Trust; Bernadka Dubicka and Stella Gallea for contacting child and adolescent psychiatrists through the Child and Adolescent Psychiatry Faculty at the Royal College of Psychiatrists; Kelly Robinson for contacting paediatric teams through the British Academy of Childhood Disability CDT database and Isabelle Robinson for contacting British Association of Community Child Health members; colleagues (Drs Honey and Smith) and parents (particularly Pamela Shaw) for their advice on survey content, and to Autistica for seeking parent views through the Discover Network.

References

Supplementary materials

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Footnotes

  • Contributors JP designed the national survey and methods with input from co-investigators (VG, IM, WF, VR, GS), advised SW on analysis and wrote the manuscript draft. JP is the guarantor. SW collected data from sites, completed analysis, and wrote the manuscript with JP. RL and LI analysed open text responses with SW. IM received funding from NHSE, leads the programme (with WF), and received ethical approval. All authors contributed to, and approved the final manuscript.

  • Funding This study was funded by NHS England from the child and young person mental health transformation funding stream, via the Learning Disability and Autism Directorate. SW is a Mental Health Fellow funded by the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria.

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

  • Competing interests No, there are no competing interests.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Methods' section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.