Concerns Rise as New Autism and ADHD Diagnosis Screening Service Rejects Majority of Referrals


The introduction of a ground breaking screening system for adults seeking autism or ADHD diagnoses has raised substantial concerns due to its rejection of up to 85% of referral requests. This system, initiated by NHS authorities in York and North Yorkshire in response to increasing demand and extended waiting times, aimed to prioritise those at the greatest risk. Under this new “pathway,” individuals interested in a diagnosis were required to complete an online questionnaire known as the Do-IT Profiler, accessible solely through a GP or healthcare professional. The profiler would then refer only those who met stringent criteria.


However, data provided by the Humber and North Yorkshire Integrated Care Board (ICB) in response to a freedom of information request showed that, since its launch in March, 3,254 individuals registered on the Do-IT Profiler, but only 501 were referred for assessment. This implies that only 15% of questionnaire users are being referred. What’s more, due to the extensive waiting times of approximately 2.5 years, none of the 501 referrals have yet undergone an assessment.


Originally designed as a three-month trial, the pilot has been extended until the following June. Campaigners like Hilary Conroy of York Disability Rights Forum have expressed concern over the limited referrals, stating that the promise to “prioritise those most at risk” rings hollow when faced with these statistics.


Furthermore, even those who qualify for referral are not immediately directed to an assessment but instead undergo clinical triaging, which itself has a waiting list of 12 to 15 months. A diagnosis is crucial for many individuals to better understand themselves and lead fulfilling lives.


Recent years have witnessed a significant surge in demand for autism and ADHD diagnoses, partly due to heightened awareness and public discourse. Many adults are now seeking diagnoses, particularly those who weren’t identified during childhood when these conditions were less well-understood.


However, the increased demand has strained underfunded NHS mental health services. The CEO of the charity ADHD UK, Henry Shelford, emphasised the importance of these diagnoses, pointing out a Canadian study that found high suicide attempts among individuals with ADHD. Shelford highlighted that a diagnosis enables people to comprehend themselves better and lead more fulfilling lives.


The pilot’s shortcomings have been evident, with accessibility issues and inadequate support for those not referred for assessment by the profiler. Nevertheless, the NHS argues that without this pilot, the waiting list would likely have closed, leaving no provision for applicants. The debate continues over how to best address the growing need for autism and ADHD diagnoses while ensuring timely and equitable access to assessments and support.


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