Research: the studies behind what we say | NeuroDiversion
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Research

The studies behind what we say

Each page here takes one study, or one idea and the studies that tested it, and sets out what was found, what it can’t tell you, and where we rely on it.

Foundational guide One idea, every study that tested it

Does the double empathy problem hold up?

Foundational paper: Milton DEM. On the ontological status of autism: the ‘double empathy problem’. Disability & Society 2012;27(6):883–887. doi:10.1080/09687599.2012.710008 Open-access copy: https://kar.kent.ac.uk/62639/

In 2012 an autistic sociologist proposed that the misunderstanding between autistic and non-autistic people runs both ways. A decade of experiments has tested it. Here’s what held, what shifted, and what nobody has measured yet.

11 key papers, annotated: Milton 2012 · Sheppard et al. 2016 · Edey et al. 2016 · Sasson et al. 2017 · Heasman and Gillespie 2018 · Crompton et al. 2020 · Crompton et al. 2020 · Morrison et al. 2020 · Mitchell et al. 2021 · Davis and Crompton 2021 · Milton et al. 2022.

2012201520192022the proposal
One proposal, then a decade of tests. Each dot is a paper the guide annotates.

Research notes 6 studies, one per page

Autistic burnout, defined by the people who’ve lived it

Raymaker DM, Teo AR, Steckler NA, Lentz B, Scharer M, Delos Santos A, Kapp SK, Hunter M, Joyce A, Nicolaidis C. “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in Adulthood 2020;2(2):132–143. doi:10.1089/aut.2019.0079

Autistic adults had been describing burnout to each other for years before research caught up. In 2020, a team built partly of autistic researchers wrote the first definition from those accounts.

Design
Qualitative
Sample
19 interviews with autistic adults (10 women, 7 men, 4 another gender, aged 21 to 65) and 19 public online sources
Where
United States
Access
Open access
Last reviewed
16 September 2026

How long does an autism or ADHD assessment take?

Maciver D, Singh Roy A, Johnston L, Boilson M, Curnow E, Johnstone-Cooke V, Rutherford M. Waiting Times and Influencing Factors in Children and Adults Undergoing Assessment for Autism, ADHD, and Other Neurodevelopmental Differences. Autism Research 2025;18(4):788–801. doi:10.1002/aur.70011

A team funded by the Scottish Government pulled the case notes of 408 completed neurodevelopmental assessments and timed every stage. The median wait was 252 days for adults and 525 for children, and adults being assessed for ADHD waited longest.

Design
Retrospective review of clinical case notes
Sample
408 completed assessments (206 children and adolescents, 202 adults) from 30 diagnosing teams
Where
Scotland, 10 of 14 health boards
Access
Open access
Last reviewed
16 September 2026

Is emotional dysregulation part of ADHD?

Shaw P, Stringaris A, Nigg J, Leibenluft E. Emotion dysregulation in attention deficit hyperactivity disorder. American Journal of Psychiatry 2014;171(3):276–293. doi:10.1176/appi.ajp.2013.13070966

In 2014, four researchers pulled together everything the literature had on ADHD and emotion. Their answer to the question was: it’s common, it does real damage, and the field can’t yet say what the relationship is.

Design
Narrative review with three meta-analyses
Sample
Dozens of studies, mostly of children; adult data from clinic samples
Where
International literature
Access
Paywalled; abstract free
Last reviewed
16 September 2026

Masking is two kinds of work

Hull L, Petrides KV, Allison C, Smith P, Baron-Cohen S, Lai MC, Mandy W. “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders 2017;47(8):2519–2534. doi:10.1007/s10803-017-3166-5

In 2017, ninety-two autistic adults described, in their own words, why they hide their autistic traits, how they do it, and what it costs them. The paper gave the field its working model of camouflaging.

Design
Qualitative
Sample
92 autistic adults (55 women, 30 men, 7 another gender), aged 18 to 79
Where
15 nationalities, just over half British
Access
Open access
Last reviewed
16 September 2026

Stimming is self-regulation

Kapp SK, Steward R, Crane L, Elliott D, Elphick C, Pellicano E, Russell G. “People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming. Autism 2019;23(7):1782–1792. doi:10.1177/1362361319829628

Diagnostic manuals list “stereotyped or repetitive motor movements” as a core feature of autism. In 2019, a team that included autistic researchers asked 31 autistic adults what stimming is for. The answer was consistent: it regulates.

Design
Qualitative
Sample
31 autistic adults (20 men, 10 women, 1 non-binary), aged 21 to 56; 19 interviewed, 12 in focus groups
Where
South-west England and London
Access
Open access
Last reviewed
16 September 2026

What happens after you tell people you’re autistic

Au-Yeung SK, Freeth M, Thompson AR. “Am I gonna regret this?”: The experiences of diagnostic disclosure in autistic adults. Autism 2025;29(8):2181–2192. doi:10.1177/13623613251337504

Twelve adults diagnosed autistic in adulthood talked, at length, about telling other people. A 2025 study from Sheffield followed what happened next: why they told, how it landed, and what it changed.

Design
Qualitative
Sample
12 autistic adults diagnosed in adulthood (6 women, 4 men, 2 non-binary), aged 20 to over 60
Where
United Kingdom
Access
Open access
Last reviewed
16 September 2026