🚀 Service ignition update 🚀 2nd stage service testing validation results
Testing, testing, testing. More testing.
A month ago I recruited over 100 additional humans to participate in second-stage validation testing of the ADHD and autism self-screen service for adult women, non-binary and AFAB.
Over the last few months, I have been conducting exploratory research and a co-design process to support service development with what is now, at last count, 267 neurodivergent humans (how did that happen?).
In less than 9 days, I single-handedly put everyone through a two-stage NDA and consent process, set up a working prototype, conducted service testing, analysed the results, and wrote up. I have since been exhausted. Red flag for burnout.
On gender equality day I published the size of the problem we are trying to solve. Today, 3 weeks later, I am finally getting around to publically publishing how a low-fidelity prototype of the service performed. In this article, I present the results and discuss my findings.
Who participated in service prototype testing?
133 neurodivergent women non-binary and AFAB from across the globe participated in 2nd stage validation testing.
During stage 1 validation testing we tested exclusively with diagnosed humans (37 autistics and 49 ADHDers), before iterating in response to feedback. For stage 2, I widened participation to self-identifying humans and recruited for increased diversity.
I consciously recruited from minority genders, women of colour and ethnicities that are less likely to be able to access a medical diagnosis and more likely to be subject to gendered violence.
Sample demographics
Sex
Female 99.25%
Intersex 0.75%
Sexuality
Heterosexual 56.4%
LGBQT+ 43.6%
Gender
Woman 88.7%
Non-binary or other minority gender 11.3%
Age
35-44 41.4%
45-54 26.3%
25-34 18.8%
55-64 9%
18-24 2.3%
65+ 2.3%
Autism
Medical diagnosis 20.3%
Self-identify 30.8%
Strongly suspect autism 30.1%
Not autistic 18.8%
ADHD
Medical diagnosis 30.1%
Self-identify 33.1%
Strongly suspect ADHD 21.1%
Not ADHD 15.8%
Type of ADHD
Combined 65%
Inattentive 30%
Hyperactive 5%
Location
UK 60.2%
USA 11.3%
AUS 9%
Other 19.5% - DE, CAD, NL, IRL, NZ, FRA, HU, IDN, IN, JP, POL, TH
Ethnicity
English, Welsh, Scottish, Northern Irish or British 53.4%
Any other White background 30.1%
Other 16.5%
My research sample was biased toward white AuDHD women.
Experience ratings
Participants rated all screenings 5-stars.
FAQ100
Screens for female autism
5-stars
⭐️⭐️⭐️⭐️⭐️
FADHD100
Screens for female ADHD
5-stars
⭐️⭐️⭐️⭐️⭐️
NDFHealth
Screens for co-occurring health issues including PMDD and hypermobility.
5-stars
⭐️⭐️⭐️⭐️⭐️
DCDA35
Screens for adult dyspraxia
5-stars
⭐️⭐️⭐️⭐️⭐️
RSD35
Screens for rejection sensitivity
5-stars
⭐️⭐️⭐️⭐️⭐️
MASK25
Screens for masking
5-stars
⭐️⭐️⭐️⭐️⭐️
SPD8
Screens for sensory processing differences
To be tested during high-fidelity prototyping (has been prototyped in a workshop)
Me to self: That’ll do donkey, that’ll do.
Detection rates
The service is designed to mitigate gender bias in diagnosis by giving women a service that helps them self-screen and self-report. Clinicians are missing, misdiagnosing and overlooking the signs of ADHD and autism in women.
→ The service detected ADHD and/or autism in 100% of participants. Everyone diagnosed with or who self-identified as ADHD or autistic met the clinical cut-off.
→ There are 3 diagnosable ADHD presentations of ADHD - inattentive, hyperactive and combined. Our scoring system will give you a strong indication of which diagnosis type best fits your profile and if you are likely to meet the clinical cut-off.
→ To meet the threshold for autism diagnosis, you must present with both social-emotional communication differences (criterion A) and restricted and repetitive behaviour (criterion B). In the absence of B, a person might be otherwise diagnosed with social communication disorder (SCD). Our scoring system can discern between SCD and autism and will give you a strong indication if you are likely to meet the clinical cut-off.
Speed to answer
ADHDers are impatient and autistic cannot tolerate ambiguity. This is how long it will take for you to learn if you are likely ADHD or autistic
→ We can detect likely inattentive type ADHD in just 3 minutes, and combined type ADHD in 10 minutes.
→ We can detect likely autism in just 10 minutes.
→ We can detect likely dyspraxia in just 3 minutes.
PS: Thank you to everyone in the research sample who timed how long it took them to complete each section and reported on this. I had a good giggle reading your feedback. ADHDers struggle with deadlines and timekeeping…
"Hilarious, I forgot the clock. I am really rushing right now. I feel the time pressure and its kind of freaking me out."
"Sorry I thought I had hit start but did not on the clock, estimate 4.30 mins"
"Thought I hit the clock."
"I forgot again! %$@*"
"Also - got to say this- I am so flipping chuffed with myself for getting this done before the 0900hrs (extended) deadline!"
😂😂😂
Sensitivity
FAQ100
→ 62/100 traits endorsed by 80% or more of autistics
→ 90/100 traits endorsed by 70% or more of autistics
→ Just 10/100 traits endorsed by 60-70%
Pictured - endorsement rates for FAQ100
The FAQ100 tested strongly. Endorsement rates did however drop when we increased the size of the sample and diversified to include self-identifying humans.
This may be due to higher levels of masking and lower levels of self-awareness pre-diagnosis. After a diagnosis people are more likely to unmask as they understand and accept their autistic identity. Alternatively, recognition and diagnosis are more likely amongst women with higher autistic traits. Nonetheless, 90/100 traits were endorsed by >70% of autistics.
Low endorsement
Endorsed least were speech differences and difficulties with cognitive empathy/theory of mind (ToM).
IQ modulates cognitive empathy - over half my research sample reports intellectual giftedness, and is unlikely to have difficulties with cognitive empathy. If we are to eventually scale the service to support those with an intellectual or learning disability then we will need to retain these items to recognise differences in ToM amongst autistics.
Neologisms (62.4%), pronominal reversal (41.4%), and co-occurring speech differences in autism were reported least. This may in part be due to a lack of self-awareness and self-reporting error.
Flat affect - reduced emotional expression - was endorsed by just 45.4%. Flat affect is a symptom of depression and CPTSD, which often co-occurs with autism. I found that neurodivergent women were high in emotionality and prone to emotional meltdowns, though had an unhealthy tendency to repress their negative emotions. I suspect reduced emotionality is more common in autistic men. This will be deprecated from version 3.
The NDFHealth screening is designed to pick up co-occurring speech and language difficulties such as development language disorder (0%), dysarthria (0%), Social pragmatic communication disorder (1.5%), stuttering (2.3%/42.3%) and apraxia of speech (4.5%/39.8%) and add these as an appendix. Self-reporting of stuttering and apraxia increased significantly when I added these items as control questions and first-person statements.
Contrarily hyperverbality (83.7%), tangential (100%) and rapid speech (71.4%), cluttering and forgetting words (91.9%) - were strongly endorsed by AudDHDers and ADHDers. Women consistently reported verbal symptoms suggesting underlying executive dysfunction and hyperactivity which are symptoms of ADHD.
FADHD100
→ 72/100 symptoms endorsed by 80% or more of ADHDers
→ 88/100 symptoms endorsed by 70% or more of ADHDers
→ 3/100 symptoms endorsed by 60-70%
→ 9/100 symptom endorsed by <60%
Pictured - endorsement rates for FADHD100
The FADHD 100 tested strongly. Endorsement rates remained stable when we increased the size of the sample and diversified to include self-identifying humans. There was very little change. 87/100 symptoms were endorsed by >70% of ADHDers.
Low endorsement
Hyperactivity presents differently in women and is more likely to be ‘internalised’. The future service will break down the scoring into overt and covert hyperactivity symptoms.
ADHD women underreported overt physical hyperactivity. Periods of excessive exercise were endorsed by just 52.7%. Excessive exercise will be deprecated from version 3 (this is covered by the NDFHealth which looks for co-occurring orthorexia).
Women were more likely to report periods of physical hypoactivity (89.8%). ADHD women commonly experience co-occurring fibromyalgia, which is characterised by symptoms of chronic pain and fatigue. Fibromyalgia is a gendered diagnosis affecting 9x as many women.
ADHD women did however report high levels of stimming/fidgeting (91.8%), inner restlessness (91.8%), verbal hyperactivity (83.7%) and mental hyperactivity - excessive rumination, mind wandering, hyper creativity or an overactive imagination.
Impulsivity symptoms were endorsed least - specifically, adrenaline sports (36.6%), thrill/sensation-seeking behaviour (52.7%), gambling and debt (42.9%), reckless driving (58%) and risky sexual behaviour (53.6%).
Either ADHD women have more self-control and are less impulsive than men or impulsivity shows up differently. ADHD women reported high levels of verbal impatience (83%), verbal impulsivity (76.8%), binge eating or drinking (74%), and impulsive spending (79.5%).
Adrenaline sports will be deprecated from version 3, and replaced by binge eating and drinking which will be split into two seperate items. All other impulsivity symptoms will be retained to reduce misdiagnosis of BPD. Impulsivity is a symptom of ADHD and BPD.
Borderline personality disorder (BPD) is the #1 misdiagnosis instead of autism and/or ADHD in women and co-occurring Complex PTSD (CPTSD) (Dell'Osso & Carpita, 2023; Fusar et al., 2020; Gesi et al., 2021; Iversen et al., 2022; Jowett et al., 2020; Rinaldi, 2021). A goal of the service is to reduce misdiagnosis rates, improve the accuracy of ADHD and autism diagnosis, and recognition of co-occurring CPTSD.
A worthy future exercise might be to look at levels of impulsivity relative to the likelihood of a historic BPD diagnosis.
Picture - Early blackboard sketches of the service user interface. This is why I cannot work in an office.
User feedback
What did women say about version 2.0? 50 quotes that made me smile and gave me the motivation to keep going despite the obstacles (thank you for this feedback).
“I liked the wording of these statements very easy to understand and pretty on-point!”
”Wow, I never thought I'd have any hyperactivity symptoms, but here we are, 30 out of 34! This screening really does seem to catch those flying under the radar.”
“Hyperactivity in my head! Great questions - thought-provoking”
“Pretty straightforward. Mimicked the design of the assessment right before this one, so could breeze right through it.”
”I feel even more validated, an almost perfect score on both inattentive and hyperactivity traits.... these are perfect questions.”
“I actually laughed when I got to the end of this part of the questionnaire - no wonder friends tell me I am driven!”
”really quickfire that one”
“It was interesting and thorough. The questions are well thought out.”
”These questions were very relevant to me and gave me a much higher score than other ADHD screeners”
”Again, felt very affirmed, validated, seen.”
”That was eye-opening!”
”OMG so quick and easy it's bonkers!!”
”Dang. Another very validating and frightening experience. But so good.”
”Simple yet effective! my score was surprisingly high - I thought I was borderline! But shows what 55 years of masking can do for you?”
”There is no ambiguity in the questions, and I don't feel like I have to overthink every one of them. It makes the struggles clear and precise, which reduces the chance of inaccurate answers.”
“Oh boy!! So me hahaha!! The questions were great, clear and didn't make me feel bad about myself.”
”Great questions! I don't think of myself as particularly hyperactive, but actually, I am!”
“As with previous feedback I have given, questions are clear and gentle. I did not feel rushed and they all felt safe to answer without judgement.”
”Emotional dysregulation is still a huge issue for me, but crippled me as a young woman. Understanding that it could be a part of who I am, as a nerodiverse woman, is so helpful.”
”I feel like I'm winning this test. Getting almost full marks.... wait?!”
”Wow. I hadn't thought of myself as hyperactive, as physically I am not really. But verbally and mentally I really am. When I feel strong emotions the words just fall out of me faster and faster. I also really struggle with sitting still when doing something boring, like in a meeting or lecture. Needoh cube has helped a lot with that actually.”
”I found the questions very gentle again. And very thought provoking too as there are things that I hadn’t considered were adhd traits before.”
”very quick to decide!”
”Great questions - ouch!”
”Again easy to follow and quick”
“Clear and concise questions. Very thorough.”
”In some ways the questions were reassuring - seeing a statement written down made it feel 'ok' to have experienced it.”
”It was mostly clear and easy to understand, and was pretty quick.”
”It was quick and easy to do, and increased my understanding of myself. I really appreciated the educational pieces about it not being a curable condition”
“Omg, I loved this section so much! I related to every part of this.
”Very useful. Didn’t realise I had so many symptoms- am a bit overwhelmed now by it!”
”Even though it was only a questionnaire, I felt as though someone understood my challenges, by naming them, when I haven't done that myself, in some cases. I loved doing it!”
“I found this very insightful and so many of the statements were relevant to me and my life - it made me wonder if you had been hiding in my head for all of these years!!!?”
“It was enlightening, comforting and self-affirming!”
“Straightforward, easy to complete. Lots of relevant options that pick out how we internalise and mask to function.”
“I was in awe at how relevant every single question was.”
“It was very confronting because I felt seen.”
”Intense in a positive sense, I perceive it as more accurate than existing tests”
“I was surprised about how high a score I got - it was validating to see these statements match my experiences”
“If I could have answered these questions on an even STRONGER scale I would have done. ie agreed intensely.”
“Incredibly relatable. Almost like someone has looked inside my brain and written about all of my experiences.”
“Thank you SO MUCH for changing this screener to be relevant to women and people AFAB!”
“Questions were clear, answer options continue to cause me to pause a bit.”
“very enlightening”
“I am a masking champion!?”
“Very relatable questions.”
“Oh god the rejection sensitive dysphoria screening oh god oh god that was powerful. That's pretty much my entire life and why I am an anxious mess. I am so so scared of doing bad things and going to jail and the whole world falling apart. This is like...basically breaking it down. I am crying now because that hit hard.”
“You know, I actually felt seen. That might sound silly but as it was focused to women and not men it was much easier to answer and go yep, I do that, or yes, but I have found a way around it. Really interested to see where this goes.”
“I am struck by how gentle yet direct this tool is. I became emotional part way through the questionnaire because I have never felt so heard. To be considered as a whole human, rather than felt to be scrutinised in order to gain a diagnosis that ultimately people often consider as ‘something wrong with me’, the difference I felt using this form was incredible. I felt relaxed, even though there were questions regarding trauma that usually would ignite an uncomfortable reaction. I felt safe throughout the whole process. “
”The questions were very specific and felt very affirming to me. Questions on other tests I've taken previously didn't relate to me in any way, meaning I got unfair and inaccurate results; however this test spoke directly to me, and I could express my needs and difficulties very specifically by answering these questions. For the first time in my life, I saw words on a screen that described me.”
🚀 Nexting
Due to a resource change, and loss of development and prototyping support owing to illness and reduced capacity, I've had to rethink how we are going to deliver and resource BETA.
The next steps are
1. Building towards BETA
High-fidelity prototyping in FIGMA that will evolve into BETA. 2 rounds of usability testing. Iterate in response to feedback.
2. Hiring
Recruit neurodivergent humans to join my service delivery team and launch BETA.
3. Funding
Launch a Kickstarter campaign and presales to pay for more humans.
4. Peer-reviewed study
We are taking a co-design approach to development and starting with the voice of lived experience. To date, we have conducted two rounds of validation testing with ADHD and autistic women.
I am hoping to return to finish my MAPPCP in Oct when I plan to conduct a peer-reviewed study and validate the screenings with a neurotypical control (subject to ethics approval).
💪 If I succeed, this will be the first prediagnostic screening instrument researched and co-designed by a neurodivergent woman, with neurodivergent humans, built for us, by us and validated to gold standard.
🚀 BETA🚀 - built by neurodivergent humans, for neurodivergent humans
I need more humans on deck. Calling for CVs, folios and day rates. I need the following skills.
Database development
Mob/web app development
Visual UI design
User research/testing
Linguist/translater
Copy editing
PM/RM
If you or someone you know is interested in joining the service delivery team, email leanne@wearemorehuman.co.uk. You must be willing to participate in BETA service delivery planning, scoping, resourcing and risk management and launching a 30-day Kickstarter campaign with presales to fund your time.
🙏 Funding - we need your help
I took a calculated risk starting this project without investment. Female founders receive only 2% of the total capital invested in start-ups.
I embarked on this project knowing it would be nigh on impossible to secure funding for a project focused on female ADHD, autism, reducing negative mental health outcomes and gendered violence. For months I tried and failed.
I’m of the view those who are most likely to invest in helping me solve this problem, are those affected by this problem. Whilst men respond to a threat by fighting, women “Tend-and-befriend”. The success of this project hangs on female allyship.
We are at a stage to continue R&D we must generate revenue. We need other neurodivergent women to invest in our services and help close the gender gap.
Rose Matthews and I are offering discounted tickets to the first session of flourishing with ADHD or autism - working with your strengths - to raise funding. Please tell a friend.
Join 60 other neurodivergent humans, discover your strengths and difficulties, and learn about positive psychology for £150. Ticket proceeds will go towards conducting my Master's research and ongoing R&D.
About the author
Hello, I am Leanne. I am a late-diagnosed neurodivergent (woman!), Positive Psychology Coach, and the founder of More Human. More Human is on a mission to close the gender gap in ADHD and autism recognition and diagnosis, widen access to good support, and create equal opportunity.
More Human are launching the first ADHD and autism self-screening service for ADHD and autism in adult women, non-binary and AFAB. Over the past 4 months, I have been working with what is now 267 neurodivergent women to conduct research into their lived experience, co-design, and test a breakthrough service. As a brave survivor diagnosed with CPTSD, I feel privileged to lead this work.
I need your help to keep going.
5 ways you can support my work and help me deliver this breakthrough service
Restack and reshare this post (it is free)
To support my research and writing, upgrade to become a paid subscriber
Book 1-1 positive psychology coaching with me - see my LinkedIn references. I’m awesome. (UK funding is available through Access to Work)
Enrol in flourishing with ADHD or autism - a 10-week group coaching and learning experience for neurodivergent women, non-binary and AFAB. You can read about the programme here. (UK funding is available through Access to Work.)
Support the Kickstarter campaign with presales to help me put more humans on deck.
Thank you for your support.
Leanne.