RESEARCH
When a number does not tell the whole story
Investigating more accessible ways to report distress and belief during trauma therapy.
EMDR therapists have reported that rating scales and cognition questions work well for some autistic clients but not for others. Affect Forge's research focus is how digital tools could support that variation without losing the purpose of the assessment. [R2]
CLINICAL BACKGROUND
Two measures, two different questions
SUD — Subjective Units of Disturbance
Usually reported from 0 to 10, SUD captures how disturbing a particular target feels now, from no disturbance to the highest disturbance. [R1]
VoC — Validity of Cognition
Usually reported from 1 to 7, VoC captures how true a selected positive cognition feels in relation to the target. Felt truth is not necessarily the same as intellectual agreement. [R1]
PUBLISHED FINDINGS
What the evidence says
Individual adaptation in EMDR
A three-round Delphi study began with 103 EMDR therapists; 43 participated in round two and 26 in round three. Its findings supported flexibility, clear communication, and responses tailored to the individual rather than a single approach for every autistic client.
Accessible questions matter
Participatory work on survey accessibility identified problems with ambiguous wording, response options, and questions that did not fit participants' experiences. The authors recommend involving autistic adults in instrument development and adaptation.
72% in one autistic-adult survey
In an online survey of 687 self-identified autistic adults, 72% reported physical assault, sexual assault, or other unwanted or uncomfortable sexual experiences.
44% in one ADHD outpatient sample
A study of 250 previously unmedicated adult ADHD outpatients in Norway found that 44% had a history of childhood or adolescent psychological trauma.
ASSESSMENT-DESIGN QUESTIONS
Where a single rating may leave questions unanswered
These are illustrative assessment-design questions, not research-participant quotations or universal descriptions of neurodivergence.
- Does the person understand what each number represents?
- Are we asking about the same target and the same point in time?
- Does the chosen cognition fit the person's circumstances?
- Is the answer about factual agreement, felt belief, or both?
- Is a mixed or uncertain experience being forced into one response?
“I know the statement is accurate, but I cannot tell how true it feels.”
Proposed recording principle
Keep uncertainty separate from absence. “I cannot rate this” must not become a score of zero.
PROPOSED APPROACHES — NOT VALIDATED REPLACEMENT SCALES
Response formats worth investigating
Numbers when meaningful
Keep conventional SUD and VoC reporting available for people who find it useful.
The person's own words
Record the description without automatically assigning a number.
Target-specific comparison
For disturbance: more, less, about the same, mixed, or unable to compare. For belief: feels more true, less true, unchanged, mixed, or unclear.
Optional personal anchors
Explore whether agreed descriptions or visual anchors help. Bodily descriptions may be useful for some people, but should not be required.
Explicit uncertainty
Distinguish cannot identify, cannot quantify, declined, and not asked. None should silently become zero.
Changing the response format can change what an instrument measures. Accessibility, reliability, and validity must be evaluated rather than assumed.
PROPOSED RESEARCH
Our research questions
Our proposed next step is to co-design and evaluate reporting formats with autistic adults, adults with ADHD, people with both, and trauma clinicians. Participation and analysis should reflect individual communication needs rather than assume one neurodivergent profile.
- 01
Understand the question
Use interviews and cognitive testing to examine how people interpret the target, timeframe, distress question, and cognition wording.
- 02
Compare response formats
Investigate comprehension, perceived fit, effort, missing responses, and whether people can communicate uncertainty without guessing.
- 03
Test measurement properties
Evaluate whether each format measures the intended construct and captures change appropriately. Repeated measures during reprocessing cannot simply be treated as a stable-state reliability test.
- 04
Establish clinical usefulness
Study whether additional reporting formats help clinical interpretation without creating misleading comparisons, unnecessary burden, or unsupported treatment decisions.
Better accessibility is the aim. Better measurement and better outcomes remain questions to test.
PROPOSED DESIGN BOUNDARY
Where physiological data belongs
In any future evaluation, EDA and pulse observations would remain separate from the person's report and the clinician's observations. We would not translate these signals into a VoC score, fill an unanswered SUD rating, or treat a physiological change as proof that a memory has been processed.
No combined “trauma score”, automated treatment recommendation, or claim of objective belief measurement is proposed on this page.
RESEARCH TRANSPARENCY
Status and scope
- Research status
- Evidence-informed development and proposed validation.
- Sources checked
- .
- Scope
- This is a targeted research overview, not a systematic review. Response-format examples are illustrative and are not instructions for self-directed trauma processing.
SOURCE REGISTRY
References
- R1Professionell bakgrundsinformation – inte en sakkunniggranskad forskningsstudie
Experiencing EMDR Therapy
EMDR International Association. Experiencing EMDR Therapy.
- Authors
- EMDR International Association
- R2Sakkunniggranskad konsensusstudie med terapeuter
Using EMDR with autistic individuals: A Delphi survey with EMDR therapists
Fisher, N., van Diest, C., Leoni, M., & Spain, D. (2023). Using EMDR with autistic individuals: A Delphi survey with EMDR therapists. Autism, 27(1), 43–53.
- Authors
- Fisher, N., van Diest, C., Leoni, M., & Spain, D.
- Publication year
- 2023 (publicerades först på nätet 2022)
- Journal
- Autism, 27(1), 43–53
- DOI
- 10.1177/13623613221080254
- R3Sakkunniggranskad metodartikel med deltagarmedverkan om mätning
Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations
Nicolaidis, C., et al. (2020). Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations. Autism in Adulthood, 2(1), 61–76.
- Authors
- Nicolaidis, C., et al.
- Publication year
- 2020
- Journal
- Autism in Adulthood, 2(1), 61–76
- DOI
- 10.1089/aut.2019.0074
- R4Sakkunniggranskad tvärsnittsstudie med webbenkät
Interpersonal Trauma and Posttraumatic Stress in Autistic Adults
Reuben, K. E., Stanzione, C. M., & Singleton, J. L. (2021). Interpersonal Trauma and Posttraumatic Stress in Autistic Adults. Autism in Adulthood, 3(3), 247–256.
- Authors
- Reuben, K. E., Stanzione, C. M., & Singleton, J. L.
- Publication year
- 2021
- Journal
- Autism in Adulthood, 3(3), 247–256
- DOI
- 10.1089/aut.2020.0073
- R5Sakkunniggranskad klinisk observationsstudie
Childhood trauma in adults with ADHD is associated with comorbid anxiety disorders and functional impairment
Peleikis, D. E., Fredriksen, M., & Faraone, S. V. (2022). Childhood trauma in adults with ADHD is associated with comorbid anxiety disorders and functional impairment. Nordic Journal of Psychiatry, 76(4), 272–279.
- Authors
- Peleikis, D. E., Fredriksen, M., & Faraone, S. V.
- Publication year
- 2022 (publicerades först på nätet 2021)
- Journal
- Nordic Journal of Psychiatry, 76(4), 272–279
- DOI
- 10.1080/08039488.2021.1962973