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HIV Treatment Bulletin

HIV and neurodiversity includes higher concerns over adherence

Simon Collins, HIV i-Base

Researchers from Queen Mary University London and the Share Collaboration presented results from a study on HIV and neurodivergence that was part of a large survey focussed on injectable ART. [1]

The research was coproduced with European community advocates, and although the injectable ART was specifically CAB/RPV-LA and the study was sponsored by ViiV, it produced an important dataset on HIV care for people who have autism or ADHD.

This was an online anonymous survey distributed through social media and community networks in 18 European countries and available in 18 languages including Arabic, Russian, Turkish and Ukrainian.

Of the 1883 completed surveys, 135 (7%) self-identified as being neurodivergent, with 1482 (79%) as neurotypical and 266 (14%) with missing data. This is a higher rate than estimated for the general population and yet this association has rarely been studied, included the impact this has for managing HIV care.

Demographics of responders overall included: 60% younger than 55; 70% cis men, 18% cis women and 8% trans/gender diverse; 74% white, 8% Black, 6% Latin/Spanish; 20% straight, 54% gay, 5% bisexual, 1.5% queer.

People with neurodivergence were more likely to be younger, more highly educated, more financially stable, have a physical disability (17% vs 8%), needing specialist support services (75% vs 46%), using additional meds to HIV (76% vs 59%), use cannabis/tranquilisers (50% vs 29% in 503 responses) and use stimulants/club drugs (35% vs 20% in 344 responses).

However, the statistical significance of these differences were not presented in either adjusted or unadjusted analyses and the denominators varied due to study attrition.

Overall, roughly 81% of respondents had had a treatment optimisation discussion with their doctor although only 40% had this within the last year, and 56% including injectable ART, with no differences by neurodiversity. Interest in, eligibility for, or previous use of injectable ART was also roughly similar between both groups (at roughly 80%, 46% and 15% respectively). However, the neurodivergent group were more interested in injections because of concerns over adherence to oral ART and they also reported missing more doses.

The researchers reported that their survey has produced the largest HIV cohort to date to look at neurodiversity and that their results clearly showed the potential for further research to affect the routine management of HIV care.

Another analyses from the Ask Me Europe survey were presented as poster included broadly similar results from the 220 UK participants. [2]

comment

Research into neurodiversity and HIV is limited but this study supports other reports significantly higher rates of neurodiversity in people living with HIV – or who are using PrEP – than in the general population. This includes that only about one-third might be formally diagnosed with autism. [3]

Hopefully, this study might prompt reviews by some of the UK clinics with established electronic records to estimate current prevalence. Future research with appropriate sampling methodology might also show the importance of developing HIV services that are designed with a stronger awareness of neurodiversity.

The results also highlight how commonly guidelines for a formal annual review of ART are not being followed and the impact this has on the option to use more recently approved drugs.

Access to injectable ART is not being proactively offered to many people, even when there are clinical reasons where it might easily be an appropriate option.

References

Unless stated otherwise, references are to the programme and abstracts of  the 6th BHIVA/BASHH Conference, 27 to 29 April 2026. HIV Medicine, Vol 27, Suppl. 1. (April 2026).
https://onlinelibrary.wiley.com/toc/14681293/2026/27/S1

  1. Devonald M et al. Addressing the data gap on neurodiversity and HIV: understanding the experiences and ART preferences of neurodivergent people living with HIV from the “Ask Us Europe” survey. BHIVA/BASHH 2026, Liverpool. Oral abstract 21.
  2. Pasin C et al. Perspectives of people living with HIV in the UK on their clinical consultations and long-acting treatment modalities. BHIVA/BASHH 2026, Liverpool.Poster abstract 185.
  3. Huyst V et al. Prevalence of autistic traits in people living with HIV and users of HIV pre-exposure prophylaxis: a cross-sectional study in Belgian HIV reference centres. AIDS Care, 1–16. (04 October 2025).
    https://doi.org/10.1080/09540121.2025.2565432