Autism spectrum disorder (hereafter referred to as autism) is a complex and lifelong neurodevelopmental condition characterised by differences in social communication, reciprocal social interaction and restricted, repetitive patterns of behaviour, interests or activities. Its prevalence continues to rise globally, 1 necessitating robust clinical pathways. Autistic individuals often encounter significant challenges when trying to access healthcare. This occurs because of various barriers at multiple levels, including organisational structures within healthcare systems, availability of appropriately trained clinicians and the accessibility of services.
One systematic review examining barriers to healthcare for autistic individuals highlighted problems such as fragmented service structures, unclear referral pathways, long waiting times and poor coordination between services. Reference Walsh, Lydon, O’Dowd and O’Connor2 Another review focusing on healthcare access pointed out that autistic people frequently struggle to navigate complex systems, particularly when roles and responsibilities between services are unclear and communication is limited. Reference Calleja, Islam, Kingsley and McDonald3 Children and young people may experience delays in diagnosis and intervention, as well as duplication of assessments without effective multidisciplinary coordination. Evidence on mental health service access indicates that system-level factors, including policy levers and service eligibility criteria, have a substantial influence on utilisation and access to psychological support for autistic children and their families. Reference Cibralic, Barker, Hawker, Tonge, Williams and Elliott4 Furthermore, it is known that young autistic adults face difficulties in recognising their own mental health needs, countering stigma and managing help-seeking processes. Reference Crane, Adams, Harper, Welch and Pellicano5
In many healthcare systems, including the UK’s National Health Service (NHS), autism assessment and care are often split between paediatricians specialising in community child health (community paediatricians), who work in child developmental teams (CDTs), and professionals working in child and adolescent mental health services (CAMHS). Although both services play crucial roles in supporting children and young people, the delineation of responsibilities is frequently blurred. The difficulties in operational convergence of these two services are exacerbated by rising demand, particularly since the COVID-19 pandemic, resource limitations and variation of clinical pathways. This may result in significant systemic challenges, duplication of assessment, and referrals being bounced between services. This can create disagreement and potentially lead to patient and family distress and suboptimal outcomes that have a direct impact on patient care.
This opinion article explores the provision of autism services for children and young people, with a focus on how CDTs and CAMHS contribute within the wider system of care. It discusses multiple challenges faced by both services in this context, including arbitrary age cut-offs, continuity of support, the importance of early intervention, the impact of stigma and the suitability of current service pathways for children whose primary needs relate to developmental delay.
Service mandates and their overlap
Developmental paediatricians evaluate, diagnose and manage a wide range of developmental and behavioural difficulties. 6 These include developmental disabilities, motor disorders, autism, attention-deficit hyperactivity disorder (ADHD), learning disorders, regulatory disorders and habit disorders such as tics or Tourette syndrome. Their expertise spans both medical and psychosocial aspects of child development, enabling early identification, diagnosis and management of neurodevelopmental conditions. For younger children, particularly those presenting with early developmental differences, paediatric services are typically the first port of call, offering comprehensive assessments that consider the full spectrum of a child’s health and developmental needs.
CAMHS multidisciplinary teams have the expertise in managing conditions such as anxiety, depression, eating disorders and severe behavioural challenges. The complex interplay between neurodevelopmental challenges and mental health means that a significant proportion of children and young people with autism experience co-occurring mental health difficulties. It is recognised that up to 70% of individuals with autism will have at least one co-occurring mental health condition, and 40% will have two or more. Reference Lai, Lombardo and Baron-Cohen7 It is this high rate of co-occurrence that often pulls autism care into the remit of CAMHS, particularly for older children and adolescents whose presentations may be dominated by mental health crises or challenging behaviours complicating the overall clinical picture.
The overlap between the two services becomes apparent when CAMHS are required to contribute to the diagnostic pathway for autism, especially for individuals with developmental or syndromic presentations, ideally requiring a CDT’s input. Similarly, CDTs may be approached for older children and adolescents with suspected autism, even when mental health comorbidities are a key concern. Children and young people with such presentations benefit most when CDTs and CAMHS work together. This may include joint assessment, shared care planning and the involvement of CAMHS expertise in areas such as comprehensive mental health evaluation and evidence-based use of psychotropic medication. A collaborative approach can minimise disruptions caused by transfers of care, reduce delays in diagnosis and treatment, and ensure that families experience a more seamless and supportive pathway.
Arbitrary age cut-offs and demand escalation
An imposed arbitrary age cut-off is problematic in determining who should see patients. A CDT may, for instance, decline to accept an older child or adolescent purely owing to age, but CAMHS may also be unwilling to accept if the needs of the individual are deemed as more developmental than associated with mental or behavioural disorders. This causes the referral ‘bouncing’ back and forth between teams, leading to delays in or duplication of assessment processes and a poor experience for the child and family.
For children diagnosed in one service but requiring ongoing care with the other because of age, the process of transfer can feel unsettling and may lead to disjointed support. The key issue is not whether care is provided by the same professional or service, but whether pathways are integrated to ensure coordinated and continued care. When transfers occur within a joined-up system, families are less likely to encounter unnecessary disruption. When CDTs and CAMHS operate in isolation from one another, families can be left in limbo, navigating delays and uncertainty. The National Institute for Health and Care Excellence (NICE) guidelines for autism in under-19s (CG128) advocate for a continuous recognition, referral and diagnosis process. 8 However, the operational reality of service commissioning often imposes artificial boundaries that undermine this continuity.
The increase in demand for autism assessments has further exacerbated this issue. As of September 2024, over 200 000 people in England were waiting for an autism assessment, marking a 25% increase in 1 year and a 96% increase in 2 years. 9 Many CDT and CAMHS services across the UK have reported extensive waiting lists, with some even halting new neurodevelopmental referrals to prioritise acute mental health crises. 10 This triage mechanism, although understandable given limited resources, means that children whose primary need is an autism diagnosis face agonising delays. Later diagnosis leads to greater mental health burden for autistic children and young people Reference Mandy, Midouhas, Hosozawa, Cable, Sacker and Flouri11 and greater mental health service utilisation. A parallel concern is seen in some CDTs, where the surge in autism and ADHD referrals has contributed to children with other developmental disorders not being prioritised on their waiting lists.
Inequity of service provision
An inequity may arise from the way services are commissioned in different parts of the world. For children seen within CDTs, underlying mental health problems, such as anxiety or depression, may not be identified and/or treated promptly. Conversely, children seen within CAMHS may be less likely to receive a comprehensive physical examination and therefore may not be sent for necessary genetic testing or medical investigations. Although psychiatrists can refer to paediatrics for investigations, and paediatricians can refer to CAMHS for psychological interventions, the process of such cross-referrals is often lengthy and burdensome for both clinicians and families, leading to unnecessary delay. Additionally, the clinician’s training and specific expertise may mean that needs relevant to the other specialty are not always identified in the first place or are flagged up late in the course of involvement.
It is also increasingly the case that CAMHS are tasked with assessing autism in younger children whose predominant presentation is developmental delay, a condition that is best suited for developmental paediatricians to assess, particularly in the context of an autism assessment. Although developmental delays can lead to emotional and behavioural challenges, comprehensive developmental assessment in this age group, including evaluation of cognitive, motor and adaptive functioning, sits more squarely within the expertise of CDTs. Paediatricians are trained to rule out other developmental disorders and potential underlying genetic, motor or neurological causes before attributing features to autism alone.
Comprehensive neurodevelopmental approach
The current dichotomy and inherent challenges between developmental paediatrics and CAMHS in autism care demand a review of existing pathways and systemic reform. Providing care to children and young people with autism must be a shared responsibility and facilitated by integration between the two services. Such care provision must not be the sole business of one specialty and should involve multiple healthcare professionals with specific expertise.
A truly child-centred model would embrace the following five principles.
Principle 1: Integrated, needs-based pathways
A child-centred model with an appropriate skill mix within the autism care team would ensure that the most appropriate expertise is used for assessment. Age is likely to play a role, alongside other referral information in decision-making at triage, with younger children, particularly those with developmental delays, likely to require most of their input from CDT, whereas older children and adolescents, especially those with comorbid major mental and behavioural disorders, would benefit from CAMHS team members being core to the assessment process. However, age should not be a limiting factor to accessing to mental health support, and conversely late-presenting adolescents should have equal access to developmental assessments, physical examination and investigations. In parallel, a truly integrated model must also adopt a family-centred approach, recognising that developmental and genetic conditions often cluster within families. Reference Jokiranta-Olkoniemi, Cheslack-Postava, Sucksdorff, Suominen, Gyllenberg and Chudal12 Incorporating family-wide assessments and offering genetic testing where indicated can help identify siblings or relatives with unrecognised neurodevelopmental needs, enabling early intervention and holistic family support.
Principle 2: Enhanced training and one multidisciplinary team
Both specialties should adopt higher training exchange programmes that allow for trainees in one specialty to rotate in the other specialty for a specified period. This would allow them to build a crucial skill mix and a comprehensive understanding of neurodevelopmental and mental health comorbidities. Although developmental paediatrics has been formally recognised in some parts of the world, it remains an emerging specialty in other regions, where training programmes are still being developed. In the longer term, there is a need for structured higher training programmes under the oversight of experts in the specialty. This would reduce reliance on general paediatricians lacking the required training and expertise, who are called on to fill specialist staff shortages.
A single point of access triage team that includes expertise in early years and mental health would help to determine the most appropriate team members and pathway for each child and avoid referrals ‘bouncing’ between services. One multidisciplinary team for autism care, including CDT and CAMHS, would allow for flexibility and access to a wider skill mix to meet the child’s needs. These measures would allow children and young people to continue receiving care from the service that most effectively meets their needs, thereby reducing unnecessary transfers between services and minimising delays in care.
Principle 3: Destigmatisation
Staff of both services should promote a neuroaffirmative public health narrative that recognises autism and other neurodevelopmental conditions as distinct in nature, while also acknowledging the increased prevalence of co-occurring mental health difficulties. The aim should not be to distance autism from mental illness, but to ensure that both are understood without stigma. Diagnostic pathways should avoid language or practices that inadvertently pathologise neurodivergence – instead they must emphasise support and empowerment for families.
Principle 4: Commissioning and resource allocation
Commissioning adequately funded integrated neurodevelopmental teams is key. It is important that commissioners understand the distinct roles of CDTs, CAMHS and other health professionals so that resources, particularly team skill mix, are appropriately aligned with patient needs. Co-commissioning of both services has previously been identified as a key factor in the success of integrated neurodevelopmental services. Reference Male, Farr and Reddy13 Commissioning services in this way should also ensure that both CDTs and CAMHS can manage their respective core functions and support integrated pathways without compromising each other.
Principle 5: Shared electronic health records and information flow
One essential enabler of integrated care between CDTs and CAMHS is the implementation of shared electronic health records. Seamless access to assessment reports, developmental histories and ongoing care plans across both services would prevent duplication and ensure continuity, particularly during transitions between community paediatrics and mental health services. Shared records also support multidisciplinary team decision-making, reduce administrative burden and improve communication with families. NHS England’s forthcoming Single Patient Record initiative, 14 now in its ‘test and learn’ phase, embodies this vision by creating a single patient record, owned by the patient and shared across the system, enabling clinicians across primary, community and specialist services to access a unified, real-time account of a child’s care. This development will form a cornerstone of digitally enabled, coordinated neurodevelopmental and mental health services across the NHS.
Economic implications and potential savings
A major advantage of having integrated neurodevelopmental service pathways lies in their potential to generate significant economic benefits by reducing duplication of assessments and investigations across multiple services. When children are seen in siloed systems, both CDTs and CAMHS, there is a possibility of elements of the assessment being replicated, such as developmental history, cognitive testing and behavioural evaluation. This is usually because the findings and outcome of the assessment completed in one service are not fully shared or recognised by the other. These complications can be mitigated by streamlining assessments within a single integrated pathway, leading to more efficient use of clinical appointments and resources. In addition, early and accurate identification and diagnosis of neurodevelopmental and mental health needs can reduce costs associated with delayed interventions, repeated referrals and inappropriate treatments.
These potential financial savings are particularly relevant given the current underfunding and resource constraints faced by CAMHS and community paediatric services in the UK. CAMHS services face widespread staff shortages, long waiting times and increasing demand, which has resulted in children being denied timely access to care. Reference Fazackerley15 Community paediatric services face identical pressures, affecting children with developmental disorders, special educational needs and complex health needs. 16 Although precise cost modelling is complex, preliminary discussions suggest that integrated pathways could deliver both improved patient outcomes and measurable system-level savings.
In conclusion, the question of ‘whose business is autism?’ should not be framed as a dispute over professional remit, but as a shared responsibility requiring coordinated and practical solutions. The challenges outlined in this article highlight the need for integrated neurodevelopmental service pathways, shared clinical responsibility between CDTs and CAMHS, and service models that prioritise continuity of care over organisational boundaries.
The enduring controversies surrounding age cut-offs, continuity of care and the appropriate placement of children with differing presentations and comorbidities are particularly pertinent when a system is under strain. The unique needs of children and young people with autism and their families must be addressed through a truly child- and family-centred model embracing genuine integration and adopting needs-based pathways. It is only through such a personalised and compassionate approach that we can ensure timely, appropriate and effective care, enabling every child and young person with autism to thrive and reach their full developmental potential.
About the authors
Yasser Saeed Khan is a senior consultant child and adolescent psychiatrist and medical lead at the Child and Adolescent Mental Health Service, Hamad Medical Corporation, Doha, Qatar, and Associate Professor of Clinical Psychiatry at the College of Medicine, Qatar University, Doha, Qatar. He is a Fellow of the Royal College of Psychiatrists and Royal College of Physicians in Edinburgh and the Chair of the Middle Eastern Division of the Royal College of Psychiatrists. Mohamed Adil Shah Khoodoruth is an assistant professor in the Department of Child and Adolescent Psychiatry at the Schulich School of Medicine & Dentistry, Western University, London, Ontario, Canada. He is a member of the Royal College of Psychiatrists. Nazim Abdel Aati is a senior consultant developmental/behavioural paediatrician and the medical director of Reenaz Specialized Center for Child Health. He is a fellow of the Royal College of Paediatrics and Child Health and a fellow the UK Faculty of Public Health.
Data availability
Data availability is not applicable to this article as no new data were created or analysed in this study.
Author contributions
Y.S.K. wrote the initial draft. M.A.S.K. and N.A.A. suggested important edits and revision. All authors reviewed and approved the final draft of the manuscript.
Funding
Open access funding was provided by Qatar National Library. The article received no other specific grant from any funding agency, commercial or not-for-profit sectors.
Declaration of interest
None.
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