Abstract
This paper considers current workforce issues facing psychological professionals working in NHS services, examining the challenges, and identifying opportunities to better meet the needs of autistic people and people with an intellectual disability (PwID) across the lifespan. The aim of this paper is to identify and publicly articulate the need for a coherent approach to guide the practice of psychological professionals when helping autistic people and/or PwID. It should be noted that the scope of the paper is limited to autism and intellectual disability. In addressing these broad groups and their co-occurring conditions and needs, we anticipate that many principles could be applied to other neurodevelopmental conditions. We also note the significant potential challenges in linking intellectual disability and autistic populations, hence have attempted – in drawing together a working group to write this paper – to ensure representation from a range of psychological professionals including those in policy, leadership, and training roles, those working in specialist or generic mental health services and undertaking clinical research across the lifespan.
Objectives:
■ To help define and support clear action so that all sectors welcome and adequately support people with neurodevelopmental differences, including autistic people and/or PwID.
■ To play a role in the development, planning and evaluation of new psychological professions roles such as the Clinical Associates in Psychology (CAPS) and Education Mental Health Practitioners (EMHPs).
■ To reflect on the obstacles to recruiting to autism and learning disability services and to propose approaches to developing a sustainable psychological workforce in these areas.
■ To recognise where good examples of education and training programmes exist to address training, confidence and competence for all psychological professionals working with those who may be autistic and/or have an ID, and consider how to establish a more consistent approach to education, training and CPD across the workforce.
■ To engage in policy discussions around the current gaps, such as the demand for diagnostic assessments and support which significantly outstrips capacity, whilst highlighting unrealised opportunities, through for example, a systematic approach to training.
■ To advocate for the need for the voice of autistic people and PwID and their families/carers which is often absent from the design and offer of help.
Introduction
Autism and Intellectual Disability (ID) fall under the broader clinical category of Neurodevelopmental Disorders[2] with early onset affecting cognitive and social development. The main clinical diagnostic classification systems, viz. the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) (DSM-5) and the International Classification of Diseases (11th edition); WHO, 2019 (ICD-11), have made significant changes to the categorisation and terminology of these conditions over the past decade reflecting the current literature but the two systems are broadly aligned with respect to Neurodevelopmental Disorders.
There is increased acknowledgement that autistic people and PwID have a high occurrence of other neurodevelopmental conditions such as Attention deficit/Hyperactivity Disorder (ADHD) and mental health conditions such as anxiety and depression (Cooper et al., 2007; Lai et al, 2019) which must be contextualised in relation to the systemic pressures, inequalities and stigma these populations may face. Despite the shift in overarching neurodevelopmental categorisation, many clinical services in the UK continue to be delivered on the basis of single conditions, such as autism assessment services or learning disability services for those with additional mental health needs. This can lead to siloed working associated with siloed, specialist training that can impede person-centred approaches to people who understandably do not often present with static or easily compartmentalised difficulties.
In 2019 The NHS Long-Term Plan was published and a national autism and learning disability team was established to ‘do more to ensure that all people with a learning disability, autism, or both can live happier, healthier, longer lives’. The objectives include three key areas: improve autism assessment services, reduce health inequality, and reduce reliance on, and increase the quality of, inpatient mental health care for autistic people. The psychological workforce plays a significant role in supporting PWiD and autistic people, their families and carers whilst contributing both to assessment and diagnosis, as well as to the development and delivery of evidence-based interventions.
Below, we will outline the different and overlapping needs of autistic people and PwID across the lifespan, considering current legislation and policy drivers for improvement in access to services through system-wide changes in training, education and workforce transformation. We will propose potential options to facilitate the development, expansion, and retention of a well-equipped psychological workforce.
Autism, clinical need, and the psychological professions workforce
Autism has an estimated prevalence of 1–1.7% (Baird et al., 2006; Brugha et al., 2011). Approximately 30% of autistic people also have an intellectual disability. Recent research shows a five-times increase in diagnosis of people who are autistic without an intellectual disability (Shenouda et al., 2023). The at-times, subtle expression of autistic features might also reflect a pattern of masking and camouflaging whereby the person learns strategies to enable them to fit in, often at the cost of their mental health (Cook et al. 2021) and this may lead to misdiagnosis, particularly in adult women.
Whilst autism is commonly assessed in childhood, it is increasingly acknowledged that individuals may present for assessment later in life when ‘social demands exceed limited capacities’ (WHO, 2019). Late diagnosis of autism tends to lead to worse mental health outcomes (Mandy et al, 2022). Autistic people are more likely to report suicidal thoughts and plans compared to the general population and other clinical groups (Cassidy et al, 2018; Pelton et al, 2020). To ensure appropriate autism-focused adaptations to interventions and equitable access to mainstream services, we need to improve identification of autistic people. Importantly, whether identified and diagnosed or not, autistic people need to access general health and mental health services like the rest of the population and thus require a workforce able to identify likely needs and make appropriate adjustments to service delivery.
The Autism Act 2009 tasks the NHS and Local Authorities in England with responsibility to establish autism assessment pathways for their local adult population. This is further supported by recent national guidance around commissioning and delivery of improved all-age autism assessment pathways in England (NHSE, 2023). Any improvement in service delivery should be underpinned by a sound evidence base and any innovation evaluated.
Psychological professionals play an important role in services for autistic people in specialist autism services and general mental health services, where autistic people are over-represented (Babb et al, 2022). Typically, elements of service provision for autistic people are commissioned separately, with assessment and diagnosis delivered independently of post-diagnostic psychoeducation, or mental health support. To provide efficient and adequate support, psychological professionals need to work across organisations, with co-location being one effective approach.
NHS England guidance (NHSE, 2023) outlines five stages of the autism assessment pathway, viz., (1) identification and referral, (2) screening and triage, (3) pre-assessment support, (4) assessment and (5) post-assessment support. Psychological professionals are well placed to participate in several elements of the assessment pathway, with specialist training and skills of Clinical Psychologists being recognised in the NICE guidelines as core members of the assessment team which might include paediatricians and psychiatrists. At present it is most likely only three of the psychological professions listed by the Psychological Professional Network, are formally engaged with the assessment pathway as a core area of practice, i.e. clinical, counselling and assistant psychologists.
The work of psychological professionals including Cognitive Behavioural Therapists, Education Mental Health Practitioners (EMHPs) and Clinical Associates in Psychology (CAPs) could, with further specialist training and access to supervision, be similarly extended to include screening, pre and post diagnostic support. This would add further value to multidisciplinary teams, provide increased capacity in diagnostic assessment, soften the edges of siloed working and ultimately improve the service experience.
However, the needs of autistic people without a diagnosis are important for all members of the psychological professions workforce to consider. Autistic people can access a range of services/settings (e.g. school, criminal justice, primary care) before their condition has been identified meaning that the psychological workforce must be equipped with the skills to identify autism, signpost/refer to relevant diagnostic assessment pathways and understand how to adjust their care. One example in schools are EMHPs who can identify and respond to children and young people’s needs irrespective of confirmation of an autism diagnosis.
NHS Talking Therapies for anxiety and depression is a common first point of contact with mental health services for autistic people and those awaiting diagnosis. There is increasing evidence of the efficacy and effectiveness of adapted cognitive behavioural therapy (CBT) for autistic people with anxiety, depression and obsessive compulsive disorder (El Baou et al, 2023; Weston et al, 2016; Wood et al, 2020]. Recent research has found better outcomes for autistic adults when offered a period of post-diagnostic support within the autism assessment service (Beresford et al., 2020).
In child and adolescent inpatient and intensive services, there are opportunities for new Youth Intensive Psychological Practitioners (YIPP) to play a role in improved services for autistic people and those with ID by providing consistent support across inpatient and community settings.
Intellectual disability, clinical need and the psychological workforce
Inthe UK,intellectualdisabilityhas aprevalence of approximately 2.16% in adults and 2.5% in children, with the majority of PwID being diagnosed with ‘mild’ ID (WHO). Some may be autistic, have ADHD and trauma histories and sadly it is a population more likely to have experienced abuse and neglect. Bowring, Painter & Hastings (2019) summarised that, in best practice research, approximately 1 in 5 or 6 adults with ID known to services were found to exhibit behaviours that challenge; many may also experience mental health difficulties.
ID services can be wide-ranging and include, amongst others, Child and Adolescent Mental health Service (CAMHS), assessment and intensive intervention services, Community Learning Disability Teams (CLDTs), inpatient services and Forensic ID services, located within the NHS, social care, education and police/Youth Offending Team (YOT). The psychological workforce in ID includes Practitioner Psychologists, Clinical Associates in Psychology (CAPS), Assistant Psychologists, Positive Behaviour Support (PBS) practitioners and trainee clinical psychologists. Practitioner Psychologists working within these services undertake a diverse range of roles including providing diagnostic assessments for ID, autism, and dementia, adapted psychological therapies for mental health conditions; support for individuals and their carers with behaviour that challenges; and complex assessments of mental capacity pertaining to specific decision making.
In adult ID services, the main source of psychological input is provided by Clinical and Counselling Psychologists, with other professions contributing more generally to psychological wellbeing. CAPS training programmes have only recently incorporated ID and whilst people with ID are eligible to access NHS Talking Therapies this tends to be for those individuals who meet criteria for ‘mild’ ID. Whilst Clinical Psychology is the main source of specialist psychological support within ID services, psychological professionals working in other specialties will likely work with individuals with ID in some capacity meaning that these skills are important across the workforce.
Autism and intellectual disability – overlapping needs and common workforce themes
Across the lifespan there is a need to think proactively and preventatively about the wellbeing of PwID and autistic people. Practitioner Psychologists have an obvious role in supporting psychological wellbeing, but also in promoting physical health (see FPID Guidance on the role of Practitioner Psychologists in supporting the physical health of People with ID, in press).
Autistic people, like PwID experience significant health inequalities, having higher risk of premature death and higher risk of experiencing mental health difficulties during their lifetime (O’Nions et al, 2023). Psychological professionals therefore need an understanding of health inequalities and their impact and to be able to advocate on behalf of PwID and autistic people to reduce these. Psychological professionals may require additional training and supervision to ensure they can consider health inequalities in all aspects of their work, from assessment to intervention. Awareness of the national policy around medication (Stopping Over Medication of People with a Learning Disability, Autism or Both with Psychotropic Medicine (STOMP) and Supporting Treatment and Appropriate Medication in Paediatrics (STAMP)), the roll out of projects and pilot testing of feasibility and acceptability of annual health checks for autistic people is essential and practitioner psychologists in particular are well placed to contribute to research and policy development in this area.
There is an established evidence-base for Positive Behaviour Support (PBS) for behaviour that challenges in ID but not for autism. More training in PBS across the psychological workforce could facilitate greater access to evidence-based and person-centred interventions for PwID as well as reducing restrictive practice. Co-occurring neurodevelopmental conditions (e.g. ADHD and dyspraxia) and mental health needs (e.g. suicidality, OCD) can look different in those with ID compared to autistic people; behaviours that challenge may be indicative of low mood or anxiety and need a different psychological approach (which might for example take a behavioural emphasis).
Whilst there has been a reduction in psychiatric admissions of PwID, there has, by contrast, been an increase in the hospitalisation of autistic people without an intellectual disability, [NHS Digital]. Where specialist mental healthcare is required and psychiatric admission is indicated, autism-informed intervention should be available. There should be consideration of physical and environmental adaptations and adjustments as highlighted in the Sensory-Friendly Resource Pack (NHSE, 2023) and guidance outlining principles for supporting autistic adults in community and inpatient mental health services (NHSE, 2023).
PwID and autistic people may be living in residential settings such as care placements and supported housing. Consultation and training to support staff is an effective way of ensuring improved experiences and outcomes for PwID and psychological professions are well placed to provide this. Furthermore, we need supporting services for parents, carers, siblings and schools for both populations. Professional support and development via practitioner networks and peer supervision groups can further establish and promote competence and confidence.
Despite the central role of Clinical Psychology practice, services for PwID have seen a steady decline in recruitment of psychological professions over the years and no comparable development of the new roles seen in mental health services. For instance, historically, ID services have struggled to recruit Clinical Psychologists, and this remains a concern. An informal survey by the BPS’s Faculty for people with Intellectual Disabilities (FPID) in 2022 found that 73% of 30 NHS Trusts who responded reported vacancies in their ID Psychology Service.
Current approach to education, training, and capacity-building
National competency frameworks outline the key autism knowledge and skills that healthcare staff in for example, England and Scotland need (Skills for Health, 2019) and the Autism Training Framework (NES, 2015). The BPS Intellectual Disability Faculty published guidelines for psychologists in assessing and diagnosing intellectual disability in adults (BPS DCP, 2015). There is an abundance of autism training available but to ensure a positive impact on staff attitudes and self-efficacy, and people’s outcomes, training should be clearly linked to relevant competency frameworks, should be co-produced and co-delivered with autistic people.
The Health and Care Act 2022 requires regulated service providers to ensure that all staff have training in autism and intellectual disability appropriate to their role. To this end NHS England has developed the Oliver McGowan Mandatory Training on Learning Disability and Autism. This is a significant step towards recognising and encouraging all services and NHS staff to accept responsibility for awareness of autism and to make reasonable adjustments for those accessing their services. Additional two-tier training is being delivered to psychiatrists, helpfully mapping onto the core competency framework in England and guidance is being developed for the delivery of psychological therapies with autistic people who have mental health difficulties.
Professional backgrounds of CBT practitioners, high intensity and PWP trainees may be diverse with respect to knowledge and prior working with neurodevelopmental conditions. Currently, training on neurodevelopmental presentations is not a core requirement of the NHS Talking Therapies curricula (Low intensity PWP and High Intensity CBT). Many courses offer up to a one day introductory/awareness training and there are post-qualification CPD training events which are accessed on an individual bespoke basis. An Autism and ID training is currently delivered in three UK universities, as part of the Children and Young People’s psychological trainings for NHS Talking Therapies. However there is no available CPD training in adapting practice for autism or ID that has been systematically evaluated.
New opportunities for professional development are emerging, such as the Multi-professional Advanced Practice Credential in Autism, alongside new roles where work with neurodevelopmental populations would be expected, e.g. Clinical Associate in Psychology (CAPS) and EMHPs. It is not yet clear how these new roles might be best deployed in relation to autism and intellectual disability and whether the current curriculum/training equips professionals to serve autistic people or those with ID. For example, while CAPS completing an integrated degree apprenticeship need to provide evidence of knowledge related to neurodevelopmental disorders and complex conditions, unless the work placement is in a service setting providing to these groups, they may not gain supervised experience of direct clinical work with autistic/PwID. Where training posts such as CAPS are established within a service, supervision capacity needs to be considered from the outset. Whilst these new roles are welcomed, service leads and training providers will need to work together to proactively address issues such as career progression, retention and governance where roles are not regulated.
A significant increase in training places on the Doctoral programmes in Clinical Psychology in England has been welcomed. A consistent, training-wide consideration of neurodevelopmental conditions in teaching, placements and research projects, is likely to benefit PwID and autistic people from the increase in numbers of mental health graduates in the workplace. However, the shortage of practitioner psychologists employed in ID services has prompted some courses to move to a competency framework for Clinical Psychology training that may not require core placements for ID. This carries the risk of not exposing trainees to working in specialist ID teams meaning that they may be less likely to consider this area of work upon qualification. However, the Faculty for People with Intellectual Disabilities (FPID) and its workforce development sub-group has put significant energies into supporting engagement of early career practitioners to consider working in ID settings, such as presenting ID workforce needs at the Group of Trainers in Clinical Psychology (GTiCP) conference, developing videos to outline the work of Clinical psychologists in ID settings https://youtu.be/ojaKO-GVjM and researching barriers to considering working in ID settings. The FPID has developed guidance for Clinical Psychology trainers on the training and clinical practice needs required to ensure competency in working with people with intellectual disabilities (BPS FPID, 2015).
Developing the psychological professions workforce in autism and intellectual disability: a strategic system-wide approach
A system wide approach is required to create a psychological workforce that can meet the needs of autistic people and PwID. Alignment from professional bodies regarding national strategies, legislation and guidance, core training curricula, CPD and agreed competencies for working with these populations should be sought. Evaluating the impact of revised training models on recruitment and retention of the psychological workforce and the outcomes and experience of autistic people and PwID accessing services will lead to continuous improvement.
The varied, complex and rich nature of psychological work with autistic and PwID means capacity building needs to be considered in the round, with consideration of professional background and the associated knowledge and skills alongside gaps in knowledge and skills as mapped against competency frameworks. On this basis appropriate training can be considered including CPD, with opportunity to observe, practise, and experience mentoring and supervision since these are more likely to facilitate highly skilled, competent and confident clinicians able to work within their competencies. However, training needs to dovetail with service design. ‘What types of staff (with what types of skills) are needed?’ is a useful question when developing training structures. Carefully planning the skill mix across a range of backgrounds will be important, for example how best to balance and employ the skills of PBS practitioners working alongside psychological professions.
Some of the key areas of alignment required include:
■ National Guidance, such as NICE and NHSE
■ Professional standards and guidance, such as BPS, HCPC and BABCP
■ Core Education and Training of psychological professionals, e.g. Clinical Psychologists, CBT therapists and Music therapists
■ CPD in autism and ID, e.g. diagnostic assessment, post-diagnostic support, adapting CBT, Sensory processing
■ Evidence of education and training impact, via lived experience feedback, practitioner experiences and evidence of need and priority
■ Training alignment with service design.
Expanding education and training Potential training models
Embedding autism and ID into pre-qualification education and training for all psychological professions.
Greater coordination between service design and the autism and ID training offer, to ensure that trainings are explicitly designed to reflect the roles in autism and LD services.
Linking education and training, both pre-qualification and CPD, to core competency frameworks – we provide an example framework for CPD for the NHS Talking Therapies for anxiety and depression workforce in Appendix I.
The development of a coherent training pathway for those seeking to develop specialist autism and ID practice, rather than having multiple overlapping trainings. This could be accomplished via the development of a single set of Autism and ID (or neurodevelopmental) qualifications.
Clinical Psychology training:
Placements: monitoring and facilitating ID learning experiences on clinical placements
Curriculum: aligning core ID learning experiences with secondary accreditation requirements e.g. ID focus in systemic teaching
Develop alternative secondary accreditation pathways for Clinical Psychology training programmes in Positive Behaviour Support (PBS) where core competencies and training are already specified across professions (see Appendix 2)
Establish a programme of training and capacity building across local ICBs with opportunities for shared learning, commissioned training across all health and social care and ongoing training, consultation and supervision roles of psychologists and other psychological professionals to facilitate appropriate referrals and ensure access to healthcare and care needs are met. Ensure Implementation Science or similar approach to identify change ideas and to record and review improvement outcomes.
Supporting and developing the roles of partners and wider community such as schools:
■ Support schools in working with children with neurodevelopmental presentations, with a focus on early identification and support to help reduce pressure on clinical services whilst improving outcomes for the autistic/ID population. Evaluate the impact of new roles in education settings.
■ Develop innovative approaches, outside of traditional clinic settings, e.g. within education, where there is less reliance on psychologists at all stages, but rather adopting more of a consultation/education model, such as supporting EMHPs or the YIPP role where practitioners could be trained specifically in autism/ID and help reduce admissions by delivering home/community-based work for those with the highest need.
■ Equipping Primary Care professionals and social prescribers to support individuals and families pre- and post-diagnosis.
■ Knowledge and skills across wider services so the support and intervention does not stop while waiting for an assessment outcome.
Considerations
■ NHSE may need to play a prescriptive role in defining minimum standards to be met in these areas.
■ Governance and quality assurance regarding training to ensure minimum standards and competence across all NHS-funded services/registration.
■ Facilitating and building on the awareness, knowledge, skills and attitudes of wider health and care staff. The new Oliver McGowan autism and learning disability training mandated for all staff working in regulated health and care settings lays a foundation of expectation that autism and intellectual disability are everyone’s business, not only specialist teams.
■ Co-production and delivery of training, including Peer Support Workers and Autism Champions.
■ Acknowledging and addressing the barriers to accessing neurodevelopmental assessment for underserved populations. Consider and evaluate innovative approaches to screening, evaluation, and diagnostic decision-making that can increase access to earlier detection and intervention of [autism] for all children. For instance, consider the growing literature on the feasibility of using either Real-Time or Store-and-Forward telemedicine for autism diagnostic assessments and interventions. (Aylward, Gal-Szabo & Taraman, 2021).
■ Higher Education Institution programmes should include teaching about enhancing equality, diversity, and inclusion across training and services.
Recruitment and retention of the psychological professions workforce
Pathways to working in autism and ID services – via professional training, or credentials or accreditation to reduce variability in quality and competence. However this may limit access and create barriers to recruitment for some. Accreditation may be an option for those seeking to specialise or progress in the field.
Recruitment and retention in autism services may be improved via access to supervision, development opportunities and career progression. Unlike ID services, a narrow focus of assessment and diagnosis in specialist autism teams does not employ all the skills of Clinical or other Practitioner psychologists. Training and workforce transformation options described below may achieve positive change.
Consideration of the implementation of funded places on all doctoral Clinical Psychology programmes with a post-qualification employment in an associated ID or autism service provider; this may help to ensure growth and succession planning.
New roles are welcomed, particularly where they may include a focus on autism/ID but regulation and oversight are needed.
Evaluation of impact of new roles on services and patient experience.
Workforce transformation
In the current context of demand outstripping capacity in many NHS services, and lack of consistent flow of qualified practitioners into the fields of autism and intellectual disability, creativity in developing or reconfiguring psychology posts may be beneficial to include opportunities for practitioners to work across both neurodevelopmental and other services and to develop rotational/preceptorship posts to include neurodevelopmental services.
Where posts are vacant for some time consideration might include the following:
■ Advertise split posts with dedicated time in an autism/ID service and a community mental health team, for instance. Both services benefit and the practitioner gains more experience across a range of domains, can develop expertise and transferrable skills.
■ Create and encourage development opportunities: a CBT therapist, for example could spend six months working in an autism diagnostic assessment service, supporting people on a waiting list and facilitating post-diagnostic groups. A newly qualified Clinical Psychologist could be offered the opportunity to work in a specialist field of interest, particularly areas commonly intersecting with autism/ID e.g. personality disorder, inpatient, perinatal mental health or eating disorders services. Building provider-wide competency, skills and self-efficacy could more readily be achieved whilst filling posts.
■ Develop and expand expertise and confidence through autism service-reconfiguration with a hub and spoke model where a specialist team delivers training, consultation, supervision and joint assessments with referring teams. This may be less relevant to ID services, but with likely unmet need across both services, joint working or knowledge exchange would benefit service users.
■ Consider the evidence for CAPS and similar training places to maximise the reach of practitioner psychologists in Autism and ID services. Where this is piloted, evaluate the impact on service users and clinical capacity across the service.
■ Embed a provider-wide (or ICB) training and capacity building strategy that is co-produced, acknowledges individual expertise, maintains and develops specialist skills and supports development and knowledge sharing in the interest of the clinical population and their families and carers.
■ Ensure timely and realistic workforce and succession planning.
Conclusions
Practitioner psychologists are in a unique position to make significant contributions to clinical practice and developments in the area of neurodevelopmental conditions owing to their all-age, all-ability training with core competencies and skills in supervision and leadership as well as training in research and service development.
Being able to both differentiate complex presentations as well as diagnose and provide psychological interventions for co-occurring conditions in autistic individuals and/or those with ID is of critical importance. Clinical Psychologists are especially well-placed in their ability to integrate approaches and formulate inclusively, with regard to the impact of each of these but also other individual and systemic factors which impact us all e.g. the impact of a lack of trauma informed approaches in health and social care systems.
Practitioner psychologists are trained in working with individuals and with families, professionals and wider networks and organisations. This strengthens the whole-person approach within a wider system and highlights the importance of engaging with families and other professionals when undertaking individual work. Difficulties in social interaction and communication might have resulted in challenging relationships within families or other key health and social care settings.
Healthcare services need to be working systemically/across agencies to ensure we meet the needs of autistic people and PwID. For example, working with specialist schools to ensure they are supporting with functional skills/curriculum that is likely to reduce behaviours that challenge (Armstrong, Denne & Bailey, 2021) and supporting skills development.
Practitioner psychologists are well-placed to contribute to and promote the need for research including co-produced research guided by autistic people and PwID. This includes fostering interest in ID and autistic research projects and establishing service audits, quality improvement projects and larger scale work to identify areas of need. Psychologists also have the skills to critically evaluate, translate and communicate evidence to wider audiences, including professional groups, external stakeholder and partner organisations as well as people with lived experience and their families.
The Psychological Professionals Workforce Plan (Health Education England, 2021) encouraged more practitioner psychologists to take up senior leadership/managerial positions in the NHS to influence development and thinking. Within provider organisations and the wider ICB system, Clinical Psychologists can be effective advocates for autism and ID service provision, using their leadership, research, clinical and communication competencies to address training needs and capacity building. Practitioner psychologists can encourage the adoption of a systematic approach to evaluation of any processes, using this to drive service development, clinical pathway reconfiguration, workforce transformation and better understanding of workforce requirements to address clinical needs amongst senior leaders and those in commissioning roles.
Practitioner psychologists have significant roles in training, developing and supervising psychological professionals within services and these are key ways in which they can influence psychological provision for autistic people and PwID. Psychologists can ensure equality and diversity are considered in recruitment and implementation of roles, ensuring the workforce is striving to represent local populations with the aim of improving accessibility and accessibility of neurodevelopmental services. As managers, psychologists may establish a range of posts with career development opportunities in autism/ID for psychological professionals at all levels and are well placed to contribute to and evaluate the impact of new roles. Ongoing teaching and supervision opportunities on psychology and wider professional academic courses is essential to foster interest in the field of autism and ID, to share current clinical practice, successes, and challenges and to offer placements and research projects in the interest of building long term capacity.
The authors have identified and confirmed several key factors posing a challenge to meeting the needs of autistic people and PwID. Whilst much is being done with respect to policy, training and guidance, and there is evidence of a willingness to rise to the challenge, a co-ordinated, system-wide approach is needed to consider bold options that may include reconsideration of service commissioning and delivery models with associated workforce training and recruitment drive, and proactive and preventative approaches to care. It is imperative that the whole system (training courses, NHSE, NHS trusts/services, BPS, and supervisors) work together to bring about change that is sustainable and that develops knowledge, positive attitudes, and self-efficacy in psychological professionals across all sectors, not only specialist services. Embedding co-production firmly into the process is essential if we are to equip psychological professionals and the wider workforce and make positive changes with regard to racial and socioeconomic disparities in autism and intellectual disability and ensure that we strive to meet the needs of those who might otherwise experience further inequalities.
Authors
Dr Janine Robinson, Consultant Clinical Psychologist, Cambridgeshire Lifespan Autism Spectrum Service (CLASS), Cambridgeshire and Peterborough NHS Foundation Trust
Professor Ailsa Russell, Professor of Clinical Psychology/Director of Studies MSc Clinical Associate in Psychology Centre for Applied Autism Research, Department of Psychology, University of Bath
Dr Kate Johnston, Consultant Clinical Psychologist National & Specialist CAMHS, South London & Maudsley NHS Foundation Trust Senior Clinical Tutor, Doctorate in Clinical Psychology, King’s College London, Institute of Psychiatry, Psychology & Neuroscience (IOPPN)
Dr Louise Acker, Clinical Psychologist, Haringey CAMHS Learning Disability Team
Dr Jason Crabtree, Clinical Director for Practitioner Psychology Training, Research Department of Clinical, Educational and Health Psychology, University College London
Dr Ayla Humphrey, Consultant Clinical Psychologist Children and Young People’s Psychology Lead, CPFT, Affiliated Assistant Professor, Department of Psychiatry, University of Cambridge
Emma Crouch, Senior Lecturer in CBT – Lead for Talking Therapies, School of Psychology, University of Surrey
Professor Will Mandy, Professor of Neurodevelopmental Conditions Deputy Head, Department of Clinical, Educational and Health Psychology, University College London
Correspondence [email protected]
Acknowledgment
The authors would like to thank the members of the Children and Young People with Learning Disabilities committee (BPS Child and Family Faculty) for their thoughtful consideration.
References
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.
- Armstrong, H., Denne, L.D. & Bailey, T. (2021) The role of key skills as a risk marker for the development of challenging behaviour in children and young people who have an intellectual disability. International Journal of Positive Behavioural Support, 11 (2), 3–14.
- Aylward, B.S., Gal-Szabo, D.E., Taraman S. (2021). Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 42(8), 682–689. https://doi.org/10.1097/DBP.0000000000000996
- Babb, C., Brede, J., Jones, C.R., Serpell, L., Mandy, W. & Fox, J. (2022). A comparison of the eating disorder service experiences of autistic and non-autistic women in the UK. European Eating Disorders Review, 30(5), 616–627.
- Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special needs and Autism Project (SNAP). The Lancet, 368(9531), 210–215
- Beresford, B., Mukherjee, S., Mayhew, E., Heavey, E., Park, A.L. et al., (2020). Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study. Health Services and Delivery Research, 8(48). https://doi.org/10.3310/hsdr08480.
- Bowring, D., Painter, J. & Hastings, R. (2019). Prevalence of Challenging Behaviour in Adults with Intellectual Disabilities, Correlates, and Association with Mental Health. Current Developmental Disorders Reports, 6 (4), 1–9.
- Brugha, T.S., McManus, S., Bankart, J., et al. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry. 68, 459–465.
- Cassidy, S., Bradley, L., Shaw, R. & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9, 42. https://doi.org/10.1186/s13229-018-0226-4.
- Cook, J., Hull, L., Crane, L. & Mandy, W. (2021). Camouflaging in autism: A systematic review. Clinical Psychology Review, 89, 102080.
- Cooper, S.A., Smiley, E., Morrison, J., Williamson, A. & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British Journal of Psychiatry, 190(1), 27–35.
- Denne, L., Jones, E., Lowe, K., Jackson Brown, F. & Hughes, C. (2015). Putting positive behavioural support into practice: the challenges of workforce training and development. International Journal of Positive Behaviour Support, 5, 2, 43–54.
- El Baou, C., Bell, G., Saunders, R., Buckman, J.E., Mandy, W. et al., (2023). Effectiveness of primary care psychological therapy services for treating depression and anxiety in autistic adults in England: A retrospective, matched, observational cohort study of national health-care records. The Lancet Psychiatry, 10(12), 944–954.
- Health Education England (2021). Psychological Professions Workforce Plan for England (2020–2024). Psychological Professions Workforce Plan (hee.nhs.uk).
- Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C. & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 20, 442–462.
- Lai, M.C., Kassee, C., Besney, R., Bonato, S., Hull, L. et al., (2019). Prevalence of co-occurring mental health diagnoses in the autism population: Asystematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819–829.
- Mandy, W., Midouhas, E., Hosozawa, M., Cable, N., Sacker, A. & Flouri, E. (2022). Mental health and social difficulties of late-diagnosed autistic children, across childhood and adolescence. Journal of Child Psychology and Psychiatry, 63(11), 1405–1414.
- NHS England, Local Government Association, ADASS (2015). Building the Right Support: A national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf.
- NHS England (2023). A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards. https://www.england.nhs.uk/long-read/a-national-framework-to-deliver-improved-outcomes-in-all-age-autism-assessment-pathways-guidance-for-integrated-care-boards/.
- NHS England (2019). The NHS Long Term Plan. https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/.
- O’Nions, E., Lewer, D., Petersen, I., Brown, J., Buckman, J. E. et al., (2023). Estimating life expectancy and years of life lost for autistic people in the UK: A matched cohort study. The Lancet Regional Health-Europe.
- Pelton, M.K., Crawford, H., Robertson, A.E., Rodgers, J., Baron-Cohen, S. & Cassidy, S. (2020). Understanding Suicide Risk in Autistic Adults: Comparing the Interpersonal Theory of Suicide in Autistic and Non-autistic Samples. Journal of Autism and Developmental Disorders, 50(10), 3620–3637. https://doi.org/10.1007/s10803-020-04393-8.
- Shenouda, J., Barrett, E., Davidow, A.L., Sidwell, K., Lescott, C. et al., (2023). Prevalence and disparities in the detection of autism without intellectual disability. Pediatrics, 151 (2), e2022056594.
- Skills for Health, Skills for Care, Opening Minds the NAS. Core capabilities framework for supporting autistic people [Internet]. London; 2019. Available from: https://www.skillsforhealth.org.uk/images/services/cstf/Autism Capabilities Framework Oct 2019.pdf
- UK Government (2009). Autism Act 2009. https://www.legislation.gov.uk/ukpga/2009/15/contents.
- Weston, L., Hodgekins, J. & Langdon, P.E. (2016). Effectiveness of cognitive behavioural therapy with people who have autistic spectrum disorders: A systematic review and meta-analysis. Clinical psychology review, 49, 41–54.
- Wood, J.J., Kendall, P.C., Wood, K.S., Kerns, C.M., Seltzer, M. et al., (2020). Cognitive behavioral treatments for anxiety in children with autism spectrum disorder: a randomized clinical trial. JAMA psychiatry, 77(5), 474–483.
- World Health Organisation. ICD-11: International classification of diseases [Internet]. 11th edition. 2019. https://icd.who.int.
Appendices
Example of accreditation pathway for PBS
Specific competencies for secondary accreditation pathway for PBS as part of clinical psychology training programmes.
| Core competency | Suggested knowledge, competency, training and development needed |
|---|---|
| PBS competencies (ID) PBS is considered a key skill as it is the recommended best practice for people with intellec-tual disabilities at risk of behav-iours that challenge (NHS, England, 2014). The PBS framework can in-clude any evidencebased inter-vention (including for example CBT or Family Therapy as well as attachment-based and trau-ma-informed interventions). |
|
Example of expansion of training for a single profession using CPD
Proposed CPD framework in neurodevelopmental conditions and complexity for CBT practitioners.
| Talking Therapies (Autistic people and people with ‘mild’ intellectual disability with anxiety or depression). All training including Low Intensity and High Intensity CBT. |
Post-training:
|
Notes
[1] [1] The term Intellectual Developmental Disorder is used in the ICD-11 and Intellectual Disability in DSM-5, but Learning Disability tends to be the prevailing term used in services and guidance documents in the UK.
[2] [2] Recent years have seen growing public interest in the conceptualisation of neurodevelopmental conditions with a preference for positive affirmation or neurodiversity-affirming language over more typical clinical and medical models perceived to be deficits- and impairment-based (Kenny et al, 2016). Where we refer to a clinical diagnosis in this paper we will use the formal diagnostic terminology but accept that individuals may have preferences for terminology.