๐ Neurodiversity 101 ๐ A public educational resource prototype
๐ Having spent the last 6 weeks down a research rabbit hole, I thought it was time to pop up for air and write something useful. ๐ Calling for feedback and correction.
The Mad Hatterโs Teaparty from Lewis Carrollโs Alice in Wonderland. Photograph: Print Collector/Getty Images.ย
July is disability pride month. So this week, I thought Iโd prototype the More Human Neurodiversity 101, Neurominorities, Positive Psychology 101 and Glossary pages and call for correction. I want to get this right before I publish these as a public resource on the More Human website.
The purpose of a service prototype is to seek feedback from users so that you can improve it to meet their unmet needs. This is why Iโve unashamedly been prototyping everything Iโm doing live in front of a public audience and failing my way forward.ย
As a trained service designer and researcher, I believe in co-design - designing services with, not just for, other people. I think it is important to start with the voice of lived experience and show I value the opinions of ADHD and autistic women the medical profession has historically dismissed, failed to include or listen to. Iโm listening.
Enhanced error detection - spotting grammatical, factual and technical errors - is an autistic strength. Righteousness - a strong need to be right and a tendency to correct others is an autistic trait. If you want an article fact-checked, ask autistics. I am confident you will quickly correct me if I get this wrong.
I will not be offended. As a design thinker, I see failure as an opportunity to learn and grow. I love feedback and donโt tend to take it personally. I have a growth mindset.
I do, however, draw the line when someone takes it upon themselves to send unsolicited abuse to my inbox. The last time someone did that, I made a public example of them on LinkedIn. I donโt regret it. I have zero tolerance for abuse.
This person then decided it was a good idea to follow up privately with me: โIโd never have posted anything publicly if someone had privately messaged meโ, before demanding I send my research to them.ย Classic.
Yeah, sure, Iโm going to allow you to attack me for coming out as autistic, accost me of lacking empathy and not feeling emotions, abuse me for my intelligence and not say anything about it? Oh, also, here is my research.
I was blocked shortly after I told them to stop contacting me. LOL.
I do not doubt that I will continue to attract hate for speaking up about the link between ADHD and autism and gendered violence. So, I was overjoyed when I recently discovered that there is a report abuse or misinformation option on LinkedIn. I used it the last time a troll descended on my profile. ๐คฌ
Iโm sure if autistic people knew about this feature, there would be a lot less BS circulating on LinkedIn. Every time I see a person correcting someone with the use of CAPITALS, I smile - autism. Intolerance for misinformation and lying are autistic traits. It is a pity this feature was not available for Rishi Sunak or Donald Trump's campaign speeches (both exits were big wins for womenโs mental health).ย
This sparked a creative idea! I have a sneaking suspicion autistics are going to LOVE thisโฆ
We are building a feedback bar where people can report misinformation, usability problems or errors on every page of the More Human website and BETA ADHD and autism self-screen service for neurodivergent women, non-binary and AFAB.
If you want to offer feedback or correct anything in this resource prototype, please leave feedback in the comments - please stay kind and keep it solution-focused.ย Please donโt be a dick by being passive-aggressive or antagonistic.
Thanks so much!
๐ Neurodiversity 101๐ (DRAFT)
What is neurodiversity?
Neurodiversity in simple human terms, refers to the natural diversity of human minds (Walker, 2012). No two people have the same brain anatomy (Valizadeh et al., 2018). Everyone thinks differently. Humanity is neurodiverse (Asasumasu, 2000).ย
People who significantly diverge in mental or neurological function from what is considered typical of most people (though still part of the normal range in humans) may identify as neurodivergent (ND) (Asasumasu, 2000).ย
The neurodiversity paradigm is a framework for understanding and accepting mental and neurological differences and people who would otherwise be pathologised as โdisorderedโ under the psychiatric model.ย
The neurodiversity movement began in the late 80s, out of the disability rights movement, the social model of disability, and the self-advocacy efforts of autistic people (Botha et al., 2024).ย
What percentage of the population is neurodivergent?
15-20% of human beings are thought to be neurodivergent. (Doyle, 2020). The 80% who do not diverge are neurotypical (NT) (Tisoncik, 1998).
Who is neurodivergent?
Neurodivergent is an umbrella term. Anyone can choose to identify as neurodivergent. It is an identity, not a diagnostic label. There isnโt an exhaustive or exclusive list that determines who can or cannot identify as neurodivergent (Wise, 2020).
Sonny has been an unstoppable force in promoting the acceptance of neurodivergent minds and reeducating people about neurodiversity. They are also credited with being the first to create the widely adapted Neurodivergent Umbrella. I was super pleased to see they released a yellow version for their recent book launch.
Picture shared by a rightfully proud Sonny Jane Wise at their book launch.
I think it is super important to role model allyship and elevate other marginalised voices like Sonnyโs. For the original post and to follow Sonny, click here.
To buy Sonny's book and support them, click here.
Neurodivergent people have spiky profiles
Neurodivergent people have what is known as a spiky profile - a mixture of significantly elevated abilities and increased difficulties relative to neurotypicals (Happy, 1994). These differences may affect their cognition, executive functioning, motor control, somatosensory system, emotion, behaviour, or social communication.ย
Autistics, for example, might have exceptional long-term or episodic memory and difficulties with their short-term or working memory. ADHDers might have hyperattention to detail and difficulties sustaining attention.
Nancy Doyle, the founder of Genius Within, is credited with creating the first infographic to depict the overlap of neurodivergent strengths and continues to write academically about the spiky profile.
To read Nancyโs write-up click here.
๐ Five principles of neurodiversity
Neurodiversity advocates believe 5 things
๐ 1. Neurodiversity is natural
Neurodiversity, like biodiversity, holds that humans are biologically and neurologically diverse. Natural variation in brain functioning may arise from genetic, social or environmental factors. This causes differences in how we process the world, think, feel and behave.ย
๐ 2. There is no โnormalโ
In simple human terms, neuronormativity is a socially constructed view of what constitutes โnormalโ thinking, feeling or behaviour.ย From a psychological perspective, neuronormativity is a cognitive bias that preferences neurotypical ways of being and rejects divergent ways of thinking, feeling and behaving (Walker, 2016). Neurodiversity opposes neuronormativity, arguing there is no โnormalโ or โrightโ way of thinking, feeling, or acting.ย
๐ 3. Neurological difference โ pathological disorder
Neurodivergent people identify as different, not disordered.ย
Neurodiversity rejects the term โdisorderโ used by the medical model to label people with significant neurological differences. Advocates argue the use of the term โdisorderโ in mental health is a social construct that promotes neuronormativity and rejects difference, increasing social stigma and exclusion.ย
Neurodiversity is anti-pathologisation. Advocates argue neurodivergence is not a disease or disorder to be eradicated, fixed, or cured. However, it is โaccepted that people may benefit from medications for symptoms associated with certain mental illnesses and neurological disorders, like epilepsy or PTSD.
๐ 4. People are disabled by a society intolerant of difference
The social model of disability (Shakespeare, 2006; Thomas, 2004) postulates that neurodivergent people are disabled by society's failure to appreciate their strengths or accommodate their differences. Neurodivergent people have unique strengths that are hugely valuable to business, academia, and society. They also have innate difficulties that society could better support.
Similarity bias, also known as affinity bias, is an increased appreciation of people like us. In-group bias is a tendency to favour members of oneโs ingroup and exclude members of the outgroup (Taylor et al., 1981). Thus, neurominorities representing a tiny percentage of the population are more likely to be excluded from participating actively in society and social groups.
๐ 5. Neurodiverse groups rock
Research shows that diverse groups are more creative and achieve better outcomes. Diversity of thinking is an underappreciated asset. Failure to accommodate is a failure to capitalise on neurodivergent brilliance and a waste of exceptional talent. Neurodiverse groups rock.ย
PS Thanks to Dr Alison Lennox, a psychiatrist who specialises in diagnosing adults with ADHD and autism, for inspiring this one with a comment cheering me on. It led to me watching this track on repeat and singing along.
โIf you think we can make magic happenโ
โLet me hear you say yeah, yeah, yeah, yeah, yeah, yeahโฆโ
๐ Neurominoritiesย (DRAFT)
What is a neurominority?
A neurominority is any group that significantly differs in mental or neurological function from what is considered typical of most people (Walker, 2012).ย
Neurominorties include a wide range of conditions. These include highly heritable neurodevelopmental and neurological conditions such as autism, ADHD, dyspraxia, Touretteโs, dyslexia, dysgraphia and dyscalculia, chronic neurological conditions such as MS and epilepsy, along with mental health conditions with a later onset such as OCD, schizophrenia, and bipolar.ย
Neurodevelopmental conditions have a high comorbidity rate with mental illness (comorbidity is a fancy medical term that refers to a co-occurring illness or disorder). ADHD and autistic humans experience high levels of mental illness, especially depression, anxiety, and PTSD/CPTSD, throughout their lifetime.
Chronic mental illnesses that may emerge later in life include OCD, schizophrenia, and bipolar. It has been argued these are โneurological conditions considering the heritability rates of 50% for OCD, 79% for schizophrenia, andย 60-90% for bipolar (Hilker et al., 2018; Mataix-Cols et al., 2024; O'Connell et al., 2021).
Anyone with a medical condition that causes changes in the way they process the world might identify as neurodivergent. This includes speech, language and communication disorders, visual or hearing impairment, and epilepsy.ย
Neurodivergence can be otherwise acquired through trauma or illness - for example, through sexual abuse, stroke or traumatic brain injury (TBI), all three are reported to cause seizures (Fordingto et al., 2020; Greig & Betts, 1992; Myint et al., 2006). Interestingly, there is a bidirectional relationship between TBI and epilepsy.
Chronic neurological or neurodegenerative conditions that may develop in later life include Epilepsy, MS and Parkinson's. Epilepsy has a strikingly high co-occurrence rate with ADHD and Autism. Up to 77% of people with Epilepsy are ADHD and around half of autistics have epilepsy (Fan et al., 2023; Jeste & Tuchman, 2015). Epilepsy is more common in autistics with an intellectual disability (Pacheva, et al., 2019).
Oddly epilepsy affects more autistic females than males (Amiet, 2008; Blackmon et al., 2016; Ward et al., 2023). This is odd because in the neurotypical population, the sex ratio is 1:1 (Wigglesworth et al., 2023). This oddity is probably best explained by one of three explanations.ย
๐ 1. The underdiagnosis of gifted autistic girls biased the research samples towards autistics who are more likely to have epilepsy. 3x as many males are diagnosed with autism (Loomes, 2017). This rises to 10:1 for girls and women without an intellectual disability (Fombonne, 2009; Rivet & Matson, 2011).
๐ 2. High rates of hypermobility EDS amongst neurodivergent women are linked to non-epilepticโโ seizures misdiagnosed as epilepsy (Koreki et al., 2022).ย
๐ 3. High rates of gendered violence experienced by neurodivergent women are causing non-epileptic seizures misdiagnosed as epilepsy.ย
Dr Jessica Eccles (AKA Bendy Brain) is a psychiatrist figuring out this puzzle for us.
Humans with antisocial (ASPD), narcissistic (NPD), or borderline personalities (BPD) might also identify as neurodivergent. Humans with these personalities are more likely to have ADHD than not (Ditrich et al., 2015; Storebรธ, 2016).ย
However, this pattern is gendered: 3x as many men have ASPD or NPD, and 3x as many women have BPD (Alegria, 2013; Skodol & Bender, 2003; Weidmann et al., 2023).
BPD is the #1 misdiagnosis for female ADHD and/or autism with 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). CPTSD is typically caused by relational trauma.
Taken together, neurodivergence may be congenital or acquired, temporary, chronic, or lifelong. Neurodivergence causes significant differences in how we process the world, think, feel and behave, relative to most people. Neurodiversity is the natural diversity of human minds.
๐ Positive psychology 101 (DRAFT)
โFor the last half century psychology has been consumed with a single topic onlyโmental illness" (Seligman, 2002A, p.1). In 1998 Dr Martin Seligman, then president of the American Psychological Society, founded the positive psychology movement calling for a strengths-based approach to mental health.
Positive psychology is the scientific study of how we can cultivate purpose and wellbeing and reach โoptimal human functioningโ (or โflourishingโ). Positive psychology practitioners believe working with our strengths boosts overall mental health and wellbeing, counterbalancing our difficulties (Seligman, 2002B).
The medical model has been criticised by Seligman as being overly concerned with diagnosing mental โdisordersโ, remediating โdeficitsโ and overlooking human strengths. He argued that whilst remedial approaches may help get a person from a place of major psychopathology or languishing back to baseline or โmental healthโ, it fails to help people achieve a state of โmental wellbeingโ.
The 80-20 deficit bias holds that humans waste 80% of our energy focusing on deficits or problems to be fixed. This leaves only 20% of our time and energy for opportunities, solutions, or strengths (Cooperrider & Godwin, 2011, 2012).
Positive psychology argues that if we flip this ratio and focus 80% of our effort on our strengths, we create the conditions for optimal human functioning (flourishing).
๐ Cultivating neuropride
Today is the 31st of July. July is disability pride month. As usual, Iโm late to the party. I have been trying to take some time off for me. I penned this article on my 37th birthday.
At the heart of the neurodiversity movement is a need to rewrite unhealthy societal narratives that shame us for being different. It is important to recognise your innate difficulties and the role of an intolerant society in creating additional challenges and take pride in your unique strengths.ย
Brene Brown defines shame as a toxic negative emotion caused by a belief that we are unworthy of support, connection, love, and belonging because there is something innately wrong with us (Brown, 2006). Shame cannot survive being spoken about.
For years, I lived with shame caused by chronic abuse from those close to me. Discovering I was AuDHD and identifying as neurodivergent helped me move away from toxic shame, to being proud I survived my family's abuse of me and have navigated this world alone since I was 15 years old.
My psychiatrist said something to me I will never forget โYour intelligence is an asset, Leanneโ. โYou are very braveโ. I replied, โI know - itโs the reason Iโm alive.โ Later, in therapy, I realised I was abused because I was an autistic child prodigy and was oppressed because I was a girl (Crespi, 2016; Ruthsatz et al., 2015). Tall poppy syndrome is gendered.
That conversation led me to decide that I was going to productise my brain and everything I have learned along the way to create a breakthrough service for women to screen for ADHD and autism, close the gender gap in recognition and widen access to a positive diagnosis. My brain is an asset.
I define neuroshame as a toxic negative emotion caused by a belief you are unworthy of support, connection, love or belonging because your brain is biologically different, society is intolerant of difference and you have internalised societyโs abuse, exclusion and rejection of you.
I define neuropride as feeling a feeling of deep pleasure or satisfaction derived from celebrating one's unique neurodivergent strengths. Moving from a place of shame to pride requires us to do three things
๐ 1. Refocus your attention on your unique strengths.
๐ 2. Show yourself unconditional self-acceptance. Practice self-forgiveness when you experience difficulties caused by biological brain differences. Stop berating yourself every time you make a mistake.
๐ 3. Recognise how the role of relational trauma and a society that is intolerant of difference is contributing to your struggles.ย
Additionally
Please give less f**ks about what critical people think of you. Be decisive about whose opinions you trust and value.
โWhen we stop caring what people think, we lose our capacity for connection. But when we are defined by what people think, we lose the courage to be vulnerable.โ (Brown, 2015, p. 245).
I am clear on who I trust. The only opinions I give f**k about are the opinions of other neurodivergent women and the doctors who saved my life.
๐ Today, on my birthday, I am no longer ashamed of my intelligence. I am proud of my neurodivergent brain. Are you proud of yours?
With love, Leanne x
PS: thanks for the 5-star reviews and super helpful feedback. I no longer feel alone in the world. I feel supported. โIt's "Hello World," we showin' up, we changin' the game.โ (Me echoing my teen idol Gwen Stefani)
๐ Glossary of terms (DRAFT)
For grammar lessons, see the work of Nick Walker, Neuroqueer. This glossary builds on Nickโs work published here.
https://neuroqueer.com/neurodiversity-terms-and-definitions/
Corrections welcome.
Allistic (citation?)
Not autistic
Comorbidity (Feinstein, 1970)
The condition of having two or more diseases at the same time.
Hyperlexia (Silberberg & Silberberg, 1967)
Early or advanced reading, writing and decoding skills. Hyperlexia is not a stand-alone diagnosis and is part of the autism spectrum.ย
Neurodivergent (ND) (Asasumasu, 2000)
Differing in mental or neurological function from what is considered typical of most people, though still part of the normal range in humans.ย
Neurodiverse (Asasumasu, 2000)
A group where one or more group members significantly differ in mental or neurological functions, from other members
Neurodiversityย (this term was co-created)
The range of differences in individual brain function as part of normal variation in the human population.ย
Neurominority (Walker, 2012)
Any group that differs in mental or neurological function from what is considered typical of most people.ย
Neuronormativity (Walker, 2016)
Favouring neurotypical ways of being and rejecting divergent ways of thinking, feeling, or behaving.
Neuropride (citation?)
A feeling of deep pleasure or satisfaction derived from celebrating one's unique neurodivergent strengths.ย
Neuroinclusion (citation?)
Intentionally including and accommodating people who identify as neurodivergent.ย
Neuroshame (citation?)
A toxic negative emotion caused by a belief you are unworthy of support, connection, love or belonging because your brain is biologically different, society is intolerant of difference and you have internalised societyโs abuse, exclusion and rejection of you.
Neurotypical (NT) (Tisoncik, 1998)
Not differing in mental or neurological function from what is considered typical of most people, though still part of the normal range in humans.ย
Intellectual disability (referred to as a generalย learning disability in the UK)
Intellectual ability that is significantly lower than average and in the bottom 2.5% of the population; ID often co-occurs with autism.
Intellectual giftedness (โโGalton, 1869)
Intellectual ability that is significantly higher than average and in the top 2.5% of the population; IG often co-occurs with autism.
Savant syndrome (Langdon, 1887)
Savant means โlearningโ or โscholarโ in French. Savant syndrome is characterised by exceptional talents in one or more domains together with an eidetic memory. Savant syndrome is not a clinical diagnosis. Savant syndrome most commonly co-occurs with autism.
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Happy Birthday Leanne ๐๐๐ฅณ and I'm glad you said you've been taking time for you. Self-care doesn't (I believe) come easily to highly intellectual, strong, brave neurodivergent women who have made it their mission to keep moving forward. A fantastic article, thankyou for writing it. I love your way with words as demonstrated by this gem 'Please give less f**ks about what critical people think of you. Be decisive about whose opinions you trust and value.'
Thanks for this, and happy birthday!