Background:

Autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) frequently persist into adolescence and young adulthood. However, there are few clinical services that support those with these disorders through adulthood.

Objective:

Our aim was to determine if clinical services meet the needs of people with ASD and ADHD, who are ‘at transition’ from childhood to adulthood.

Design:

A longitudinal study of individuals with ASD and ADHD, the impact of services and treatments.

Methods:

Our research methods included (1) interviewing > 180 affected individuals (and their families) with a confirmed diagnosis of ASD and/or ADHD, (2) screening for ASD and ADHD in approximately 1600 patients and (3) surveying general practitioner prescribing to 5651 ASD individuals across the UK. In addition, we tested the effectiveness of (1) new ASD diagnostic interview measures in 169 twins, 145 familes and 150 non-twins, (2) a magnetic resonance imaging-based diagnostic aid in 40 ASD individuals, (3) psychological treatments in 46 ASD individuals and (4) the feasability of e-learning in 28 clinicians.

Setting:

NHS clinical services and prisons.

Participants:

Focus – young people with ASD and ADHD as they ‘transition’ from childhood and adolescence into early adulthood.

Interventions:

Testing the utility of diagnostic measures and services, web-based learning interventions, pharmacological prescribing and cognitive–behavioural treatments.

Main outcome measures:

Symptom severity, service provision and met/unmet need.

Results:

People with ASD and ADHD have very significant unmet needs as they transition through adolescence and young adulthood. A major contributor to this is the presence of associated mental health symptoms. However, these are mostly undiagnosed (and untreated) by clinical services. Furthermore, the largest determinant of service provision was age and not severity of symptoms. We provide new tools to help diagnose both the core disorders and their associated symptoms. We also provide proof of concept for the effectiveness of simple psychological interventions to treat obsessional symptoms, the potential to run treatment trials in prisons and training interventions.

Limitations:

Our findings only apply to clinical service settings.

Conclusions:

As individuals ‘transition’ their contact with treatment and support services reduces significantly. Needs-led services are required, which can both identify individuals with the ‘core symptoms’ of ASD and ADHD and treat their residual symptoms and associated conditions.

Future work:

To test our new diagnostic measures and treatment approaches in larger controlled trials.

Trial registration:

Current Controlled Trials ISRCTN87114880.

Funding:

The National Institute for Health Research Programme Grants for Applied Research programme.

Article history

The research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0606-1045. The contractual start date was in August 2007. The final report began editorial review in August 2013 and was accepted for publication in July 2017. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Declan Murphy has received research funding from Shire (Basingstoke, UK) and leads the European Union (EU) Innovative Medicines Inititative consortium EU Autism Interventions – a Multicentre Study for Developing New Medications that receives funding from both the EU and the European Federation of Pharmaceutical Industries and Associations. Ian Wong received a research grant from the European Commission, Hong Kong Research Grant Council and Janssen-Cilag Ltd (High Wycombe, UK) on research to investigate the safety of antipsychotic drugs and attention deficit hyperactivity disorder treatments. In addition, Ailsa Russell has a patent Authors Copyright – Treatment Manual Cognitive–Behavioural Therapy for Obsessive–Compulsive Disorder in Autism Spectrum Disorder pending. Susan Young has received honoraria for consultancy, travel, educational talks and/or research from the Cognitive Centre of Canada, Janssen Pharmaceutical (Raritan, NJ, USA), Eli Lilly (Indianapolis, IN, USA), Novartis (Frimley, UK), HB Pharma (Sorø, Denmark), Flynn Pharma (Stevenage, UK) and Shire. Philip Asherson has received honoraria for consultancy, travel, educational talks and/or research from Janssen Pharmaceutical, Eli Lilly, Novartis, HB Pharma, Flynn Pharma and Shire.