Autism has long been viewed as a paediatric condition, meaning that many autistic adults missed out on a diagnosis as children when autism was little known. We estimated numbers of diagnosed and undiagnosed autistic people in England, and examined how diagnostic rates differed by socio-demographic factors.This population-based cohort study of prospectively collected primary care data from IQVIA Medical Research Data (IMRD) compared the prevalence of diagnosed autism to community prevalence to estimate underdiagnosis. 602,433 individuals registered at an English primary care practice in 2018 and 5,586,100 individuals registered between 2000 and 2018 were included.Rates of diagnosed autism in children/young people were much higher than in adults/older adults. As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34), vs. 0.02% aged 70+ (1 in 6000). Exploratory projections based on these data suggest that, as of 2018, 463,500 people (0.82% of the English population) may have been diagnosed autistic, and between 435,700 and 1,197,300 may be autistic and undiagnosed (59-72% of autistic people, 0.77%-2.12% of the English population). Age-related inequalities were also evident in new diagnoses (incidence): c.1 in 250 5- to 9-year-olds had a newly-recorded autism diagnosis in 2018, vs. c.1 in 4000 20- to 49-year-olds, and c.1 in 18,000 people aged 50+.Substantial age-related differences in the proportions of people diagnosed suggest an urgent need to improve access to adult autism diagnostic services.Dunhill Medical Trust, Economic and Social Research Council, Medical Research Council, National Institute for Health Research, the Wellcome Trust, and the Royal College of Psychiatrists. 

https://doi.org/10.1016/j.lanepe.2023.100626

Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data.

Background Rates of diagnosed attention-deficit hyperactivity disorder (ADHD) may be increasing in the UK. Aims Estimate incidence and prevalence of ADHD diagnoses and ADHD prescriptions in UK adults and children in primary care. Method We conducted a cohort study using IQVIA Medical Research Data, a UK primary care database. Rates of ADHD diagnoses and ADHD prescriptions were calculated between 2000 and 2018 for individuals aged 3–99 years, analysed by age, gender, social deprivation status and calendar year. Results Of 7 655 931 individuals, 35 877 (0.5%) had ADHD diagnoses; 18 518 (0.2%) received ADHD medication prescriptions. Diagnoses and prescription rates were greater in men versus women, children versus adults, and deprivation status (nearly double in most deprived versus least deprived quintile). By 2018, the proportion of ADHD diagnoses was 255 per 10 000 (95% CI 247–263) in boys and 67.7 per 10 000 (95% CI 63.5–71.9) in girls; for adults, it was 74.3 per 10 000 (95% CI 72.3–76.2) in men and 20 per 10 000 (95%CI 19.0–21.0) in women. Corresponding figures for prescriptions were 156 per 10 000 (95% CI 150–163) in boys, 36.8 per 10 000 (95% CI 33.8–40.0) in girls, 13.3 per 10 000 (95% CI 12.5–14.1) in men and 4.5 per 10 000 (95% CI 4.1–5.0) in women. Except among 3- to 5-year-olds, the incidence and prevalence of ADHD diagnoses and prescriptions have increased from 2000 to 2018 in all age groups. The absolute increase was highest in children, but the relative increase was largest among adults (e.g. among men aged 18–29 years, approximately 20-fold and nearly 50-fold increases in diagnoses and prescriptions, respectively). Conclusions The incidence and prevalence of both ADHD diagnoses and medication are highest among children. Proportionally, rates increased most among adults during 2000–2018. ADHD diagnoses and prescriptions are associated with socioeconomic deprivation.

Attention-deficit hyperactivity disorder diagnoses and prescriptions in UK primary care, 2000–2018: population-based cohort study

The UK's services for adult attention-deficit hyperactivity disorder (ADHD) are in crisis, with demand outstripping capacity and waiting times reaching unprecedented lengths. Recognition of and treatments for ADHD have expanded over the past two decades, increasing clinical demand. This issue has been exacerbated by the COVID-19 pandemic. Despite an increase in specialist services, resource allocation has not kept pace, leading to extended waiting times. Underfunding has encouraged growth in independent providers, leading to fragmentation of service provision. Treatment delays carry a human and financial cost, imposing a burden on health, social care and the criminal justice system. A rethink of service procurement and delivery is needed, with multiple solutions on the table, including increasing funding, improving system efficiency, altering the service provision model and clinical prioritisation. However, the success of these solutions hinges on fiscal capacity and workforce issues.

UK adult ADHD services in crisis.

Abstract An increasing number of studies have reported the existence of ADHD symptoms to be risk factors for technology addictions among young adults. In contrast to previous studies, the aim of the present study was to examine different dimensions of technology addiction in a community sample of adults and to examine their association with the individual trait-level ADHD symptoms of inattention and hyperactivity-impulsivity. A community sample of one hundred and fifty adults were recruited to participate in this study via convenience sampling. Participants completed the Adult ADHD Self-Report Scale Symptom Checklist, the Bergen Social Media Addiction Scale, the Smartphone Addiction Scale, Young’s Internet Addiction Test, the Compulsive Online Shopping Scale, and a Demographic Information Form. Composite ADHD score, inattention and hyperactivity/impulsivity were positively associated with technology addictions (internet, social media, smartphone, and online shopping addiction). Hierarchical regression analysis revealed inattention and hyperactivity-impulsivity were predictors of social media addiction and smartphone addiction, whereas they were not for online shopping addiction. Furthermore, inattention was the only predictor of internet addiction. People with non-clinical, trait-level ADHD, especially those showing a preponderance of inattention symptoms appear to be more vulnerable to developing some forms of technology addiction. 

Trait-level non-clinical ADHD symptoms in a community sample and their association with technology addictions

PurposeAttention deficit hyperactivity disorder (ADHD) is a neuro-developmental condition that has frequently been pathologised in career research and broader society to date. The study seeks to reframe such assumptions through a qualitative positive-focused exploration of career stories of ADHD adults, elicited through a strength-focused technique with wide applicability for coaching and other career-based development activities.Design/methodology/approachSituated in a strength-focused coaching psychology paradigm, the authors undertook semi-structured interviews with 17 participants, using an adapted feedforward interview technique (FFI) rooted in positive psychology (PP), to investigate individuals' strengths and successful career experiences.FindingsNarrative thematic analysis of the transcripts identified two core themes: “the paradoxical nature of strengths” and “career success as an evolving narrative”. The participants described how they have achieved career success both “in spite of” and “because of” ADHD. The use of the FFI demonstrated a helpful and easily taught method for eliciting personal narratives of success and strengths, an essential foundation to any coaching process.Originality/valueThis research provides a nuanced overview, and an associated conceptual model, of how adults with ADHD perceive their career-based strengths and experiences of success. Further, the research shows the value of using a positive psychological coaching approach when working with neurominority individuals, using a successful adaptation of the FFI. The authors hope that the documentation of this technique and the resulting insights will offer important guidance for managers as coaches and internal and external career coaches, as well as providing positive and relatable narrative resources for ADHD adults.

Paradoxical career strengths and successes of ADHD adults: an evolving narrative

ADHD in adults is a common and debilitating neurodevelopmental mental health condition. Yet, diagnosis, clinical management and monitoring are frequently constrained by scarce resources, low capacity in specialist services and limited awareness or training in both primary and secondary care. As a result, many people with ADHD experience serious barriers in accessing the care they need.Professionals across primary, secondary, and tertiary care met to discuss adult ADHD clinical care in the United Kingdom. Discussions identified constraints in service provision, and service delivery models with potential to improve healthcare access and delivery. The group aimed to provide a roadmap for improving access to ADHD treatment, identifying avenues for improving provision under current constraints, and innovating provision in the longer-term. National Institute for Health and Care Excellence (NICE) guidelines were used as a benchmark in discussions.The group identified three interrelated constraints. First, inconsistent interpretation of what constitutes a 'specialist' in the context of delivering ADHD care. Second, restriction of service delivery to limited capacity secondary or tertiary care services. Third, financial limitations or conflicts which reduce capacity and render transfer of care between healthcare sectors difficult. The group recommended the development of ADHD specialism within primary care, along with the transfer of routine and straightforward treatment monitoring to primary care services. Longer term, ADHD care pathways should be brought into line with those for other common mental health disorders, including treatment initiation by appropriately qualified clinicians in primary care, and referral to secondary mental health or tertiary services for more complex cases. Long-term plans in the NHS for more joined up and flexible provision, using a primary care network approach, could invest in developing shared ADHD specialist resources.The relegation of adult ADHD diagnosis, treatment and monitoring to specialist tertiary and secondary services is at odds with its high prevalence and chronic course. To enable the cost-effective and at-scale access to ADHD treatment that is needed, general adult mental health and primary care must be empowered to play a key role in the delivery of quality services for adults with ADHD. 

/pdf/mainstreaming-adult-adhd-into-primary-care-in-the-uk-3sg15w1t.pdf

Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations

Attention deficit hyperactivity disorder (ADHD) is associated with poor educational outcomes that can have long-term negative effects on the mental health, wellbeing, and socio-economic outcomes of university students. Mental health provision for university students with ADHD is often inadequate due to long waiting times for access to diagnosis and treatment in specialist National Health Service (NHS) clinics. ADHD is a hidden and marginalised disability, and within higher education in the UK, the categorisation of ADHD as a specific learning difference (or difficulty) may be contributing to this.This consensus aims to provide an informed understanding of the impact of ADHD on the educational (or academic) outcomes of university students and highlight an urgent need for timely access to treatment and management.The UK Adult ADHD Network (UKAAN) convened a meeting of practitioners and experts from England, Wales, and Scotland, to discuss issues that university students with ADHD can experience or present with during their programme of studies and how best to address them. A report on the collective analysis, evaluation, and opinions of the expert panel and published literature about the impact of ADHD on the educational outcomes of university students is presented.A consensus was reached that offers expert advice, practical guidance, and recommendations to support the medical, education, and disability practitioners working with university students with ADHD.Practical advice, guidance, and recommendations based on expert consensus can inform the identification of ADHD in university students, personalised interventions, and educational support, as well as contribute to existing research in this topic area. There is a need to move away from prevailing notions within higher education about ADHD being a specific learning difference (or difficulty) and attend to the urgent need for university students with ADHD to have timely access to treatment and support. A multimodal approach can be adapted to support university students with ADHD. This approach would view timely access to treatment, including reasonable adjustments and educational support, as having a positive impact on the academic performance and achievement of university students with ADHD. 

/pdf/university-students-with-attention-deficit-hyperactivity-28dfrgrv.pdf

University students with attention deficit hyperactivity disorder (ADHD): a consensus statement from the UK Adult ADHD Network (UKAAN)

Concerns have been raised in the media1 over the quality of assessments for adult attention deficit hyperactivity disorder (ADHD) and the role of the private sector.2 Patients who feel unable to accept long NHS waiting lists and NHS commissioning bodies (including via ‘right to choose’) may pay significant sums for ADHD assessments, often without knowing how valid or cost-effective they are. Patients subsequently expect GPs to prescribe medication (mainly stimulants, which are controlled drugs) when primary care staff may have questions about the rigour of the diagnostic assessment or treatment. The patient may then be referred for a long awaited new NHS assessment, with difficulties if the diagnosis is rescinded. A published framework of what expert consensus deems a high-quality assessment would be useful to patients, GPs, commissioners, psychiatrists, and others. This could help GPs to have more confidence to challenge poor assessments and accept good ones. It might help patients to decide where they spend money and commissioners to consider service-level agreements. The UK Adult ADHD Network (UKAAN, www.ukaan.org), was founded in 2009 and provides training courses, education, support, and research for professionals working with adults with ADHD. UKAAN has been working for over a year to produce an expert consensus statement for an Adult ADHD ‘Assessment Quality Assurance Standard (AQAS)’. Boxes 1 and 2 provide a summary from the AQAS of what a quality assessment should constitute. | | || 

Assessments for adult ADHD: what makes them good enough?

Background Attention Deficit Hyperactivity Disorder (ADHD) frequently persists into adulthood. There are practice guidelines that outline the requirements for the assessment and treatment of adults. Nevertheless, guidelines specifying what constitutes a good quality diagnostic assessment and report and the competencies required to be a specialist assessor are lacking. This can lead to variation in the quality and reliability of adult ADHD assessments. Poor quality assessments may not be accepted as valid indicators of the presence of ADHD by other clinicians or services, resulting in wasteful re-assessments and delays in providing treatment. To address this issue the UK Adult ADHD Network (UKAAN) proposes a quality framework for adult ADHD assessments - the Adult ADHD Assessment Quality Assurance Standard (AQAS). Methods The co-authors agreed on five questions or themes that then guided the development of a set of consensus statements. An initial draft was reviewed and amended in an iterative process to reach a final consensus. Results What constitutes a high-quality diagnostic assessment and report was agreed by consensus of the co-authors. The resulting guideline emphasises the need to evaluate impairment, describes core competencies required by the assessor and highlights the importance of linking the diagnosis to an appropriate post-diagnostic discussion. Assessments should be completed in the context of a full psychiatric and neurodevelopmental review, and need good interview skills, using a semi-structured interview with open questioning and probing to elicit real life examples of symptoms and impairments. It is recommended that 2 hours or more is required for an adequate assessment including both the diagnostic assessment and initial post-assessment discussions. Conclusion The AQAS has been developed as a practical resource to support reliable and valid diagnostic assessments of adult ADHD. It is intended to complement formal training. A secondary objective is to empower patients by providing them with evidence-based information on what to expect from an assessment and assessment report.

The adult ADHD assessment quality assurance standard

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Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations

University students with attention deficit hyperactivity disorder (ADHD): a consensus statement from the UK Adult ADHD Network (UKAAN)

Assessments for adult ADHD: what makes them good enough?

The adult ADHD assessment quality assurance standard