Gaining access to the gentleman's clubs - what is stopping women from getting an ADHD or autism diagnosis?
Gaining membership in the ADHD and autism gentlemen's clubs is no easy matter. We asked 176 neurodivergent women & AFAB what's stopping them from getting through the door.
3x as many men are diagnosed with neurodevelopmental/neurological conditions. ADHD and autistic women are missed, misdiagnosed and later diagnosed than men. We asked 176 neurodivergent women and AFAB “What is stopping you getting an ADHD or autism diagnosis?” This is what they told us.
Gaining access to the gentleman’s club
The latest research estimates that 80% of autistic women have not been diagnosed by age 18 (McCrossin, 2022). I’d caution against this as optimistic. Within our sample, the median average age of an ADHD diagnosis was 38 and autism 39. I was diagnosed with both ADHD and autism at age 36. This is 30 years far too late.
Autistic boys are diagnosed on average aged 4, and ADHD boys aged 7 (Centre for Disease Control, 2024). Both my brothers were diagnosed long before me. ADHD and autism are highly heritable neurodevelopmental and neurological conditions that run in families. One of three, I’m the only girl. Firstborn and lucky last for a diagnosis. This figures…
2x as many men are diagnosed with ADHD and 3x as many men are diagnosed with autism (Loomes, 2017; Slobodin & Davidovitch, 2019). This rises to 10:1 for girls without an intellectual disability (Fombonne, 2009; Rivet & Matson, 2011). Gifted girls are overlooked.
Intelligence differences are a classic sign of autism. An impressive 58% of the women in our research sample had intellectual giftedness. Of these women, 80% self-identified or were diagnosed with autism (the remaining 20% reported ADHD). Just 2.4% had an intellectual disability - this may in part be because we recruited through LinkedIn - and also identified as autistic.
The same year that my brother was diagnosed with ADHD, age 9, I was invited to join Mensa. I was 10. I was reading 8-10 books a day, had self-taught myself maths 6 years ahead of my class peers, was a chess savant and regularly re-educated my primary school teacher (I continue to have zero recognition of hierarchy). Ask my psychiatrist.
Whilst my Dad asked if I ate dictionaries for breakfast nobody paused to ask “Is Leanne autistic?” I recall when my Dad read the Mensa invitation letter, he jumped up and down exclaiming “You’ve got my genes!”. 10-year-old me stood there suitably unimpressed. Men always have to discredit women. I was destined to be a feminist.
Parents are two and a half times more likely to google “Is my son gifted?” (Stephens, 2017). Only 32% of Mensa members are female. Yet, according to twin studies, intelligence is 80-95% heritable (Bouchard, 2013; Lichtenstein et al., 2022). Which might be why Dame Stephanie Shirley humours intelligent ambitious women have flat heads and took to signing her letters “Steve” whilst launching the tech start-up that made her millions.
Steve’s Ted talk - Why Ambitious Women Have Flat Heads.
When I wrote to “Steve” and asked for her advice about my little master plan to screen every woman on the planet for ADHD and autism (BTW we are currently user testing the first pre-diagnostic screening service), with a lofty goal to reduce gendered violence and negative mental health outcomes, she told me I must persevere and do it.
This is why I’ve been doubling down on LinkedIn talking about the intelligence link and making a tonne of noise about my ADHD and autism. Much probably to the surprise and raised eyebrows of the many execs I once consulted to. This move was strategic. I have a sneaking suspicion half the female leaders in my network are unwittingly autistic.
A few have emailed me having had this epiphany.
Why are grown women suddenly demanding ADHD & autism diagnoses?
The media are jumping all over the sudden rise in demand for adult ADHD and autism diagnoses with a variety of misguided explanations as to why. There is a simple explanation. COVID.
Autistics who have difficulties with tolerating uncertainty and lack of control, and a deep-seated fear of germs started having meltdowns. ADHDers who struggle with waiting, and cannot cope with confinement or inactivity (did anyone else feel trapped?) went mental at home. The seemingly endless pandemic would have caused many neurodivergent women to have burnouts exposing undiagnosed ADHD and autism.
Living in a state of chronic stress has disabled many women missed in childhood and triggered mental health crises for many ADHDers and autistics. According to the World Health Organisation, the pandemic meets all the criteria for a mass psychological trauma and is predicted to have a greater negative impact on mental health than WW2. Is it any wonder ADHD and autistic women who experience high levels of co-occurring anxiety and depression, all together now, have hit bottom?
Meanwhile, the UK Prime Minister Rishi Sunak is gaslighting the public that “People are not 3x sicker” and we cannot be “over-medicalising the everyday challenges and worries of life”. Disparaging the impact of a killer virus on every neurodivergent woman who is immunocompromised, suffers from fibromyalgia and crippling depression.
Instead, he wants us to turn a blind eye to the fact we are now facing a secondary mental health crisis and with no access to mental health support because of Tory cuts to NHS services.
In 2022 the Guardian named “Gaslighting” the word of the year. I love that people are finally waking up to the fact that CEOs and politicians are all too often toxic male narcissists who have zero empathy or compassion for human health and will tell sick people to “get back to the office” so they can financially exploit them. Perhaps the pandemic has highlighted the fact that narcissistic male leadership is hurting people and the planet.
So it should come as no surprise, now that neurodivergent women are suddenly putting their hands up, many are struggling to gain access to a diagnosis. We asked these women what was stopping them. This is what they told us (Spoiler alert - more gaslighting)
Film still - Gaslight 1944
Barrier #1 Medical gaslighting & GPs restricting access
Neurodivergent women reported that GPs were dismissing their concerns, invalidating them and restricting access. “You have to convince a GP that your characteristics are sufficiently disabling to get a referral.” Women said their concerns were not being taken seriously and they did not feel believed. “Disbelieved” x50 post its.
Countless studies have shown that when a woman goes to her GP reporting illness they are more likely to be told they are delusional, imagining things, the pain is in their head and refused a referral for treatment or given antidepressants. (Samulowitz et al., 2018; Wesolowicz et al., 2018)
Whilst 3x as men are diagnosed with neurodevelopmental/neurological conditions, women are 2x more likely to be diagnosed with mental illness and over-prescribed psychiatric meds. Depression 2:1, Anxiety 2:1, PTSD 2:1, CPTSD 2:1, BPD 3:1 (Andrade et al., 2003; Bromet et al., 2011; McGinty et al., 2021; Regieret al., 1990; Skodol, 2003).
This persists even when researchers control for known sex disparities due to gendered violence/trauma and fluctuations in female hormones.
A man who goes to his doctor with the same mental health symptoms is less likely to be diagnosed with mental illness or medicated with antidepressants.
”[I experienced] blatant gaslighting at the first point of contact with GP.”
Because boys are born different. Whereas women are mental.
What did women tell us? “I left with a script for antidepressants”
Barrier #2 She’s hormonal - diagnostic overshadowing & misdiagnosis
Being a woman is depressing. Women may experience higher levels of mental illness due to
Oppression and lower socioeconomic status
Domestic abuse - 84% of victims are women. 93% of domestic abuse defendants are men.
Gendered violence - 91% of sexual assault victims are women. 99% of perpetrators are men.
Victim blaming, scapegoating, internalised as self-blame and shame
Hormonal fluctuations - the onset of puberty, PMS, perinatal, perimenopausal depression.
Higher rates of autoimmune disorders and fibromyalgia
Predisposition to repetitive thinking (rumination)
See the scholarly work of the late Susan Nolen-Hoeksema on sex differences in depression (1990).
Being a neurodivergent woman is super depressing. Neurodivergent women experience significantly elevated levels of mental illness relative to their neurotypical peers. Especially
Depression
Anxiety
PTSD
CPTSD (often misdiagnosed as BPD)
Premenstrual exasperation (PME) or premenstrual dysphoric disorder (PMDD)
Perinatal or perimenopausal depression
Diagnostic overshadowing a medical bias where an underlying disorder is missed due to a more obvious illness. Neurodivergent women experience significantly elevated levels of menstrual disorders and PMDD (a severe form of PMS with dysphoric mood). This may in part explain why 176 women reported that GPs brushed off ADHD or autism, misattributing their symptoms to hormones, depression or anxiety.
Neurodivergent women are more likely to be first diagnosed with co-occurring depression or anxiety which obscures underlying autism and/or ADHD. Alternatively, women reported their concerns were being written off to trauma or they had been misdiagnosed as BPD.
BPD is the #1 misdiagnosis for ADHD and/or autism and co-occurring CPTSD (Dell'Osso & Carpita, 2023; Fusar et al., 2020; Gesi et al., 2021; Iversen et al., 2022; Jowett et al., 2020; Rinaldi, 2021).
If you are not hormonal, you are borderline.
Barrier #3 Schoolboy stereotypes & gendered diagnostic tools
Neurodivergent women felt that clinicians were blinded by gender bias and unable to see past sex stereotypes of ADHD and autism. Clinicians have barely moved past the misconception that these conditions only affect school boys, and kids grow out of them.
”ADHD seems to be more often associated with “naughty little boys””
ADHD and autism are lifelong neurodevelopmental conditions that impact men and women equally, but GPs have yet to have training in that. Women felt that GPs were overly reliant on gendered diagnostic tools and that they’d be dismissed to outdated gendered diagnostic criteria.
”The diagnostic process is designed for boys (for example, some questions in the questionnaire mention interests that are typically associated with boys; the questions do not take into account the amount of masking women are forced/socialised to do)"
Many women said they did not fit the sex stereotypes. A key fear was that they would not score highly enough against the diagnostic criteria or meet clinical cut-off.
Neurodivergent women have no faith in clinicians to see past schoolboy stereotypes and spot the signs in women.
Barrier #4 Lack of awareness & education as to what ADHD & autism look like in grown women
Neurodivergent women strongly believed there is a lack of awareness, understanding and education as to what ADHD and autism look like in grown women. “Many medical professionals are woefully under-informed of ADHD and Autism in adults.” They said there is a lack of research and experts focusing on girls and women.
”GPs [are] not trained to identify the differences in presentations (and in some cases just not trained in ADHD or autism at all!)”
LGBQT+ are significantly overrepresented in the autistic and ADHD community (Warrier et al., 2020). Many AFABs will proudly identify as non-binary or other gender. Whilst research into the lived experiences of girls and women has increased in the last 5 years, research on gender differences is scant. There is a gender gap in research.
Women argued there is a need for increased education, training and resources for teachers, GPs, psychologists and psychiatrists.
Don’t lose all hope. There are clinicians who care (namedropped in this article). Dr Alison Lennox of the autism training programme at the Royal College of Psychiatrists is super interested in what women have to say and how clinicians can improve the diagnostic process (my next article).
Barrier #5 Women mask more - we are forced to hide our difficulties to fit in
Whilst stigma, shame, fear of judgement and exclusion were raised, this was not in relation to seeking a diagnosis. Women felt that they had been pressured to fit into socialised gender roles and hide their difficulties to avoid stigma, discrimination and exclusion.
”[society] forces girls to mask their traits and become people pleasers to fulfil the expectations of society and feel any sense of love and belonging.”
The resounding belief was that women mask more and hide their difficulties better. So much so that it becomes automatic and unconscious. Neurodivergent women learn to mask to comply with neurotypical norms and avoid social stigma and exclusion. Masking was viewed as a key barrier to diagnosis.
Barrier #6 Wait times for an NHS diagnosis - several years wait for an already 30-year-too-late diagnosis
What do ADHDers struggle with most? Waiting. Neurodivergent women are being forced to wait years for an already 30-year-too-late diagnosis. For ADHDers who struggle with impatience, this is bound to be infuriating. For autistics who struggle with uncertainty, this is nauseating.
From lived experience of waiting on my own diagnosis, the wait was agonising. Not only did I have to put up with countless people invalidating me, “But you don’t have a diagnosis yet”, “You can’t be autistic, Leanne”, “It might be something else”, “I would never have picked you as autistic” I had to put up with my own internal monologue constantly gaslighting me that I might be schizophrenic or bipolar.
The current wait times are damaging neurodivergent women’s mental health. The hundreds of desperate emails I received when I announced I was recruiting to test for a new screening service only validated that. We need to give these women peace of mind.
Barrier #7 Cost of a private diagnosis - that will be 2-3k, please
After I’d read about the 50th post it stating “cost” it was loud and clear. Neurodivergent women are struggling to pay for a private diagnosis. This isn’t surprising given the UK statistics state that 79% of autistics are unemployed and 1/3 of ADHDers are chronically unemployed.
The cost of an ADHD diagnosis in the UK is currently around 1k. Autism is a whopping 2.5k. I consider myself incredibly privileged that I was able to get a 3.5k diagnosis with one of the UK’s leading female autism specialists Dr Emma Colvert. My diagnosis was life-changing. I would never take it back. I want every woman to be able to have that gift.
Accessing an ADHD or autism medical diagnosis remains a white male privilege. So I decided to do something about it.
NEW ADHD & autism screening service for women and AFAB
More Human is launching the first ADHD and autism pre-diagnostic screening and self-identification service for women and AFAB. We are building support to widen access to medical diagnosis and financial support such as Access to Work and PIP. Women deserve better than this BS.
It’s been clinically validated by Dr Hannah Hayward - who just received her PhD in female autism - and has amazingly agreed to support me through this madness. We are going to do a podcast in July on the barriers to diagnosis which I hope will reach the clinicians who need to listen.
We just onboarded 176 fired-up neurodivergent women to test the service. Estimated time to ignition summer 2024. Please expect ADHD delays.
References
Brett, D., Warnell, F., McConachie, H., & Parr, J. R. (2016). Factors Affecting Age at ASD Diagnosis in UK: No Evidence that Diagnosis Age has Decreased Between 2004 and 2014. Journal of autism and developmental disorders, 46(6), 1974–1984. https://doi.org/10.1007/s10803-016-2716-6
Bouchard T. J. (2013). The Wilson Effect: the increase in heritability of IQ with age. Twin research and human genetics : the official journal of the International Society for Twin Studies, 16(5), 923–930. https://doi.org/10.1017/thg.2013.54
Bromet, E., Andrade, L. H., Hwang, I., Sampson, N. A., Alonso, J., de Girolamo, G., de Graaf, R., Demyttenaere, K., Hu, C., Iwata, N., Karam, A. N., Kaur, J., Kostyuchenko, S., Lépine, J. P., Levinson, D., Matschinger, H., Mora, M. E., Browne, M. O., Posada-Villa, J., Viana, M. C., … Kessler, R. C. (2011). Cross-national epidemiology of DSM-IV major depressive episode. BMC medicine, 9, 90. https://doi.org/10.1186/1741-7015-9-90
Dell'Osso, L., & Carpita, B. (2023). What misdiagnoses do women with autism spectrum disorder receive in the DSM-5?. CNS spectrums, 28(3), 269–270. https://doi.org/10.1017/S1092852922000037
Fombonne E. (2009). Epidemiology of pervasive developmental disorders. Pediatric research, 65(6), 591–598. https://doi.org/10.1203/PDR.0b013e31819e7203
Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187–198. https://doi.org/10.1007/s00406-020-01189-w
Gesi, C., Migliarese, G., Torriero, S., Capellazzi, M., Omboni, A. C., Cerveri, G., & Mencacci, C. (2021). Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. Brain sciences, 11(7), 912. https://doi.org/10.3390/brainsci11070912
Gu, Z., Dawson, G., & Engelhard, M. (2023). Sex differences in the age of childhood autism diagnosis and the impact of co-occurring conditions. Autism research : official journal of the International Society for Autism Research, 16(12), 2391–2402. https://doi.org/10.1002/aur.3043
Iversen, S., & Kildahl, A. N. (2022). Case Report: Mechanisms in Misdiagnosis of Autism as Borderline Personality Disorder. Frontiers in psychology, 13, 735205. https://doi.org/10.3389/fpsyg.2022.735205
Jowett, S., Karatzias, T., Shevlin, M., & Albert, I. (2020). Differentiating symptom profiles of ICD-11 PTSD, complex PTSD, and borderline personality disorder: A latent class analysis in a multiply traumatized sample. Personality disorders, 11(1), 36–45. https://doi.org/10.1037/per0000346
Lichtenstein, P., Tideman, M., Sullivan, P. F., Serlachius, E., Larsson, H., Kuja-Halkola, R., & Butwicka, A. (2022). Familial risk and heritability of intellectual disability: a population-based cohort study in Sweden. Journal of child psychology and psychiatry, and allied disciplines, 63(9), 1092–1102. https://doi.org/10.1111/jcpp.13560
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013
McGinty, G., Fox, R., Ben-Ezra, M., Cloitre, M., Karatzias, T., Shevlin, M., & Hyland, P. (2021). Sex and age differences in ICD-11 PTSD and complex PTSD: An analysis of four general population samples. European psychiatry : the journal of the Association of European Psychiatrists, 64(1), e66. https://doi.org/10.1192/j.eurpsy.2021.2239
McCrossin R. (2022). Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children (Basel, Switzerland), 9(2), 272. https://doi.org/10.3390/children9020272
Nolen-Hoeksema, S. (1990). Sex differences in depression. Stanford University Press.
Nolen-Hoeksema, S., Wisco, B. E., & Lyubomirsky, S. (2008). Rethinking Rumination. Perspectives on psychological science : a journal of the Association for Psychological Science, 3(5), 400–424. https://doi.org/10.1111/j.1745-6924.2008.00088.x
Petersen, J. (2013). Gender differences in identification of gifted youth and in gifted program participation: A meta-analysis. Contemporary Educational Psychology, 38(4), 342–348. https://doi.org/10.1016/j.cedpsych.2013.07.002
Regier, D. A., Narrow, W. E., & Rae, D. S. (1990). The epidemiology of anxiety disorders: the Epidemiologic Catchment Area (ECA) experience. Journal of psychiatric research, 24 Suppl 2, 3–14. https://doi.org/10.1016/0022-3956(90)90031-k
Rinaldi, C., Attanasio, M., Valenti, M., Mazza, M., & Keller, R. (2021). Autism spectrum disorder and personality disorders: Comorbidity and differential diagnosis. World journal of psychiatry, 11(12), 1366–1386. https://doi.org/10.5498/wjp.v11.i12.1366
Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957–976. https://doi.org/10.1016/j.rasd.2010.12.003
Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). "Brave Men" and "Emotional Women": A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain research & management, 2018, 6358624. https://doi.org/10.1155/2018/6358624
Salk, R. H., Hyde, J. S., & Abramson, L. Y. (2017). Gender differences in depression in representative national samples: Meta-analyses of diagnoses and symptoms. Psychological bulletin, 143(8), 783–822. https://doi.org/10.1037/bul0000102
Skodol, A. E., & Bender, D. S. (2003). Why are women diagnosed borderline more than men?. The Psychiatric quarterly, 74(4), 349–360. https://doi.org/10.1023/a:1026087410516
Slobodin, O., & Davidovitch, M. (2019). Gender Differences in Objective and Subjective Measures of ADHD Among Clinic-Referred Children. Frontiers in human neuroscience, 13, 441. https://doi.org/10.3389/fnhum.2019.00441
Stephens, Seth, Davidowitz. (2017). Everybody Lies : Big Data, New Data, and What the Internet Can Tell us About Who We Really Are . New York: Dey Street Books.
Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Lai, M. C., Allison, C., & Baron-Cohen, S. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature communications, 11(1), 3959. https://doi.org/10.1038/s41467-020-17794-1
Wesolowicz, D. M., Clark, J. F., Boissoneault, J., & Robinson, M. E. (2018). The roles of gender and profession on gender role expectations of pain in health care professionals. Journal of pain research, 11, 1121–1128. https://doi.org/10.2147/JPR.S162123