Neurodiversity 101: why it is time to modernise our views of ADHD and other ND traits

Perspectives can change

I am an optimist.I think we can change people's perceptions.

Think about how we have changed the views of left-handed people. Abram Blau, a psychiatrist from New York City, wrote what was an influential book in the 1940s: The Master Hand: A study of the origin and meaning of left and right sidedness. He warned that, unless retrained, left-handed children risked severe and life-long mental and cognitive deficits!

The?foreword ?to the book says "the point that sinistrality is in many cases only one symptom of an underlying personality disturbance should be an influence toward utilizing treatment techniques to deal with the total disturbance rather than with the single symptom"

This view is astounding to read today when we consider 10–15 % of any population is left-handed. It also feels very close to home as my grandson and husband are both left-handed. My late mother-in-law was also left-handed and was forced to write with her right hand in school and ridiculed for being a left-hander. She even had her hand tied behind her back!

One person told me that when they were in school in the 1960s they were regularly hit with a ruler if they wrote with their left hand, and another man told me that he was made to wear a sock on his left hand in school in the 1980s.

Being stigmatised

We can all feel shame when we feel we are different or perceived as different from the people around us. What is good news is that we can change the way society see each of us... but takes time and effort.As a doctor 20-30 years ago I would never have told colleagues I had ADHD because of the stigma associated with this framing.

I have been thinking about the stigma related to some conditions and how they are viewed by society. Certainly ADHD takes a real bashing and some people love to say it 'doesn't exist' or that 'everyone is a bit ADHD'!

A couple of years ago I also wrote about changing the framing around deficit and disorder associated with ADHD and discussed this with expert Fin O'Regan . We both agreed that it was time to change the narrative.

Where does the term 'stigma' come from?

The etymology of stigma goes back to 1590s (earlier?stigme, c. 1400), "mark made on skin by burning with a hot iron," from Latin?stigma?(plural?stigmata), from Greek?stigma?(genitive?stigmatos) "mark of a pointed instrument, puncture, tattoo-mark, brand," from root of?stizein?"to mark, tattoo," from PIE root?*steig-?"to stick; pointed".

Figurative meaning "a mark of disgrace" in English is from1610s.?Stigmas?"marks resembling the wounds on the body of Christ, appearing supernaturally on the bodies of the devout" is from 1630s; earlier?stigmate?(late 14c.), from Latin?stigmata.also from?1590s . Being stigmatised is being pointed out as different from the main pack!

What does it mean in this context?

A recent blog in Psychology Today also talks about stigma in relation to mental health challenges.Mental health stigma?refers to prejudice against people with mental illness. This made me think about Neurodivergent traits and how they are seen in this mix.

The American?Psychiatric ?Association describes three types of stigma.?I have extended this to encompass neurodivergent conditions too...

1. Public stigma?- this refers to the negative attitudes society has toward persons with mental illness or a neurodivergent condition
2. Self stigma- when someone internalizes the attitudes
3. Institutional stigma?is systemic and includes laws or policies from the government or other organizations that, intentionally or not, discriminate against those with mental illness/and or ND condition. One glaring example is the disparity in ADHD services versus treatment for other conditions.

Because of the stigma that remains relating to ADHD, some people report that cannot fully participate in society and lack acceptance for who they are( good bits and challenges ... and spiky profile) (Schrevel et al, 2016).

A more modern view of ADHD

A recent editorial (worth a read!) in the Journal of Child Psychology and Psychiatry from Barbara Franke writes about it being time to modernise the concept of ADHD.

I think this is not only true for ADHD but for other conditions where we have used deficit, and disorder as our framing. Franke talks about 'ADHD consumers' and how there are high levels of unmet needs. Would people with Diabetes have the same experiences or do we view this as different? Is there a social hierarchy of what is seen as more important or less important to focus on?

Franke goes on to describe a Modern concept on ADHD (MocA).

"The “Modernized concept of ADHD” (MocA) team aims to take the discourse on ADHD to the next level with this modernized concept: from a limited, symptom- and impairment-driven paradigm to a dynamic model that acknowledges ADHD's heterogeneity and integrates weaknesses and strengths, focused on individual trajectories in functioning and self-management."

"Follow the path of the unsafe, independent thinker. Expose your ideas to the danger of controversy. Speak your mind and fear less the label of "crackpot" than the stigma of conformity." said Thomas J. Watson

What can we do to change perceptions relating to ADHD and other associated ND conditions?

• Recognise the spectrum and variability between one person and another.
• Recognition that we change across our life-span.
• Greater awareness and knowledge among health professionals, educational workers (including teachers), and employers, in order to increase confidence in supporting individuals with ADHD.
• Franke said: "Increasing self-management and reducing ignorance can help empower people with ADHD and may reduce suffering from self-stigma and public stigma. It can thus contribute to secondary and potentially even primary prevention."
• Awareness helps but in an analysis of 22 studies looking at the effects of mass-media interventions on stigma such as in print media, recordings, radio, television, movies, mobile apps, and online publications. They found that most interventions did help decrease prejudice, with effects ranging from small to moderate. But sadly the impact on discrimination was less?optimistic , with fewer studies showing a reduction in discrimination.
• Having different people in society speaking up about their experiences can help.
• Evidencing inequity is important and presenting the facts including the economic impact.
• Discussing about the benefits of having a neurodiverse world.
• Being an ally and speaking out about misinformation when you see it is important.

Blog Author

I am Amanda Kirby, CEO of?Do-IT Solutions ?a tech-for-good company that delivers consultancy and guidance, training and web-based screening tools that have helped 10s of 1000s of people. We strive to deliver person-centered solutions relating to neurodiversity and wellbeing.

I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity. I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself (bits of me I share!).

Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work?Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce . My 10th book came out called?Neurodiversity and Education ?in March 2023. I was also voted one of the top 20 Thinkers by?HR magazine for 2022 !

Next week is the ADHD Foundation conference in Liverpool - really exciting multidisciplinary event. If you can go... do.