Neurodiversity – Why do we need to get the right numbers?

Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher.

Originally published as part of The Neurodiversity 101 LinkedIn Newsletter.

Why is getting ‘good’ data important for becoming truly neuroinclusive?

Someone asked me the other day if I knew of the stats for the number of people who are neurodivergent in the workplace. Seems an easy question but actually is a very difficult answer. Someone else asked how many people are neurodivergent in leadership positions.. again we don’t know….and…..How many women are neurodivergent compared to men… also difficult to answer and more…..

What does the data really mean?

“Facts are stubborn things, but statistics are pliable.”

― Mark Twain

The answer to the question always depends on how and what questions we ask.

I read one paper recently and it said…“The Center for Disease Control (CDC) reported that 44% of autistic individuals have average to above-average intelligence (CDC, 2016). Other research has noted that subgroups within autism may have exceptionally high levels of intelligence (Krumm et al., 2015).”

What does that really mean?… If we take a bell curve of ‘intelligence’ (and what does that really mean as IQ is not a very good measure for neurodivergent talent) then some people in every population will be at one end and some at the end.

This spectrum of differences is the same in an Autism Spectrum population…..but often I hear people say ‘people with’ autism or dyslexia have ‘super talents/superpowers’…. but what does that mean as talent can only be used if it can be seen and promoted… What I mean from this is that the DIVERSITY in neurodiversity= variation.

So who and what is missing from this data?

Data about disability(who is disabled/who sees themselves as disabled/ who says they are disabled…) can vary significantly depending on how you ask the question, making it difficult to interpret what the data actually indicates.  Generating accurate, comparable, and disaggregated statistics on disability/neurodiversity is going to be challenging.

How are we defining neurodiversity/neurodivergent? We don’t have a consistent definition, so this makes it difficult to know where you stand…We are talking about a construct that is dimensional, variable, and changes over time. The challenges someone may have in the workplace and how they impact the person may be dependent on the task and environmental demands.

Sampling

Is the sample/data really representative of the population? Sampling in large organizations misses, for example, the 99% of UK SMEs and people working independently servicing these companies and the community at large.

How do you ask the questions?

We are used to asking about gender and ethnicity and have thought we can do the same for neurodiversity too. But what we are asking about is very different. Neurodivergence is not an either/or response. Some people may have 5 diagnoses along with physical and psychological challenges( remember that common conditions all co-occur with each other.), and other people may have one ( but could have more but have not been assessed for them).

Questions about functional limitations may be a useful approach but may overinflate the numbers of some populations with ‘disabilities’ while undercounting other groups. The Washington Short Set is one example of how questions used.

How often have you seen a tick box on a form asking:

“Are you disabled?” ……….Yes/No……

In a US context, ‘The Americans with Disabilities Act’ defines disability as “a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment”.

The 1840 US Census was the first known national survey or census to include questions about disabilities undertaken in the US. The questions were added to the census at the request of reformers who wanted to provide data to encourage the government to build institutions to confine persons with disabilities! This approach was drawing on models that viewed disability as a problem. How far have we come?

In the UK we have the Equality Act 2010 defining disability.

In contrast to this more medical model….. the social model of disability views disability as the “limit or loss of opportunities to take part in community life because of physical and social.”

Not surprisingly any data collected in this way is going to be coming from a very heterogeneous(mixed) grouping including individuals who are blind or visually impaired, who are deaf or hard of hearing, who are autistic or dyslexic, who have mobility-related disabilities, who have mental health challenges and more.. and some or all of the above… and these are only the disabilities you know about or have access to gaining a diagnosis ( remember there are real social barriers to diagnosis!). ( See my other newsletters about this).

What influences which box you tick (or not)?

There are lots of reasons why someone would be concerned about ticking the yes box such as:

• Does everyone who is neurodivergent even think they are disabled or that society is disabling them? Listen to TedX talk by Chelsea Williamson to think about if you classify yourself as disabled.
• What happens next? Does this assist you if you do ( e.g. get an interview?). If you are not sure you will not say yes. If there is a ‘prefer not to say’ option and you are very honest you may tick this box.
• Is the data going to be anonymized? Is it clear what it will be used for? Who will see the data?
• When are you being asked this? Such as at the application phase which may concern you if you are not sure what happens next or once you have a job. Are you concerned that the person reading the application will give you the interview ( has that been stated?) but are you also a bit concerned that the person reading the application will think you will need loads of work to get going and may do so begrudgingly…. and biases are stopping them consider your real strengths and reasons for applying?
• Are you disabled only if things change in the workplace… WFH v working in an office?
• Does the question disadvantage those who can’t gain a specific diagnosis e.g. ADHD (long waiting lists) compared with Dyslexia (as it is easier to obtain)?
• What stage of your career are you at? If you are just starting off on your career how confident are you of sharing this information especially if your past experiences have not gone so well perhaps in another company?
• Do you prefer to be seen for who you are, and your skills and talents ( and not perceived as disabled)…. but still know you need some adjustments to be your best self?
• Have you learned to ‘compensate’ in some ways…Some people with Dyslexia may have functioned well and ‘compensated’ for their dyslexia. They may not consider themselves to require adjustments whereas another person may do so. However, the reality may also be when they come into a new job with new demands the tools and approaches that worked well before may not work in this new setting. You may have been used to hiding or masking challenges by working out of hours and working longer than others to compensate for your challenges and see this as your norm.
• Do you think you need to be honest or answer what you think others are thinking?

Who does yes/no miss?

“99 percent of all statistics only tell 49 percent of the story.”

― Ron DeLegge II, Gents with No Cents

If we want to see the picture of neurodiversity and employment we may potentially miss out on those who cannot get across the recruitment hurdles or who have left the organization for a variety of reasons. Our sample may be biased …. and our conclusions and plans can be based on these results.

We know that reporting about disability often misses out on those who are most disadvantaged in society. Interestingly, the UN’s Washington Group’s questions on disability status provide a solution to this with a standard global definition and method to measure disability. Rather than use yes/no answers, The Washington Group’s questions ask respondents to position themselves on a four-point scale according to their level of difficulty and focus on six functional areas.

So what does it mean for companies to report their stats?

A recent report by the Business Disability Forum found that neither employers nor disabled employees felt that mandatory reporting would improve the outcome for workers with disabilities. Just because you record it doesn’t mean that it means you are a good employer. There was concern also that by making reporting mandatory people who are disabled would be seen as a hassle… rather than the process of collecting information being a hassle… a potential negative association.

Tech companies in the past have reported difficulty knowing what and how to report diversity data. This seems somewhat of irony when they are often in the business of data collecting.

If we take stats that are inaccurate this means we plan actions based on these stats. Importantly, this may mean we could be making completely the wrong actions because we have not heard from the ‘private voices’ in our heads.

Why should we collect data? What is its purpose?

Is it for statistics ( internal use or external?) … or is it to actually decide on the type of support someone needs or improve practices in your organization and understand what helps people progress and thrive in your organization? These are two very different things.

• Not sure what to ask You may be concerned about stating it wrong... person with or ..ic…
• Not sure how to ask
• Don’t believe it is of much value because people may not report it because of fear/stigma.
• Don’t have the means to do so
• Difficulty interpreting the data
• Our definition has been disputed by specific groups
• Not sure whether to use person-first or identity-first language.

The ethics of getting the data right

I had an interesting conversation with Rob Price, from Alchemmy about digital ethics. In his fascinating blog, there was a comment from a member of the Digital Ethics Advisory panel member about how we collect data and what purpose it is being used and consider if this could be a discriminatory practice.

Dr. Saskia Dörr said:

“Discrimination is the act to make unjustified distinctions between human beings based on the group of people to which they are perceived to belong.” It is part of the UN Global Compact Principle 6: Labour. Recruiting means to find the best match between a job profile with a person´s skills and traits profile. As it is not relevant from which region or ethnic group a person comes to fit to a job profile a selection after this criterion would be seen as discrimination (with or without AI-based processes). That´s rather straightforward. 

But, if you would like to avoid discrimination and you are using an AI to support recruiting decisions you even have to make sure that the AI is tested against discriminatory biases – gender, race, religion, ethnic groups etc. This is a rather huge problem, as mechanisms to ethically assess constantly changing neural networks are just evolving (black box problem). A responsible company has to setup routines to check this or to ask third parties for audits.”

It made me again question what we ask and how we ask it.

What do we really want to know?

I think:

• We want to know where the places in the recruitment, onboarding, and ongoing day-to-day processes need to be adjusted/amended and adapted to give everyone the skills to have equitable chances to progress.
• We want to know who is not getting through to gaining and sustaining employment and the reasons for this and listen to their experiences.
• We also want to know what people’s different and real experiences are. These are less about people with autism v dyslexic people but to create a greater understanding of what stops someone from progressing and/ or working optimally in different settings – both big and small.

There are going to be gender differences in neurodiversity that are often not considered or discussed that may be having a real impact on whether someone discloses they have challenges in the workplace. If you are a neurodivergent parent with an ND child there is evidence of additional costs ( time, money, energy) relating to this.

There will also be very different experiences for a single mother or a parent with three children who has to now commute an hour a day ( and has kids with ASC, DCD, or ADHD). They will be different for someone entering an organization at base camp and for those coming in at the C-suite regardless of neurodivergent traits.

We are the sum of our parts both past and present!

Even if we consider two people in an autism hiring program they are going to be very different. Where they come from, the jobs they are doing, single or married ….. and also each person will have different degrees potentially of Developmental Coordination Disorder, ADHD, Dyslexia, Anxiety, Depression, and a lot more. Autism, DCD, and ASC, for example, are also associated with having some physical impact as well.

We can’t homogenize the data and draw simple headline conclusions!

When reviewing what works on not regarding, for example, ‘autism in the workplace’ programs, we sometimes forget this huge heterogeneity in different people and their skills and experiences.

When we try to collect data we need to be sure we don’t collapse the data which results in us coming to some over-simplistic conclusions that are good in some ways for a non-existent average person. What I mean by this – is they are not really useful specifically at a person level,

We need YOUR help to understand better how to support a neurodiverse workforce. This includes understanding training and support needs and having a more nuanced appreciation.

Our fab team at Do-IT Solutions is working in collaboration with the City and Guilds Foundation to create:

The City & Guilds Foundation Neurodiversity Index and a comprehensive report.

*We need YOUR help*

Please, please, please can you help us and answer a short survey if you are in HR or are/consider yourself to be neurodivergent/ have neurodivergent traits, or are just interested in being a part of this work?

The bigger the sample the more we will be able to tell you.

We will collate all the information and provide you with a comprehensive report.

Get started today and go to this link: or go to https://tinyurl.com/2v6knsc8 and help us all to understand better about measuring what we need to do to become a more neuro-inclusive workplace.

Thanks ++++

The blog author

I am Amanda Kirby, CEO of Do-IT Solutions a tech-for-good company that delivers web-based screening tools and training that help 1000s of people 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 together the award-winning book Neurodiversity at Work Drive Innovation, Performance and Productivity with a Neurodiverse Workforce. I have my 10th book coming out called Neurodiversity in Education coming early in 2023. I was also voted one of the top 20 Thinkers by HR magazine for 2022!

Reference: https://unsdg.un.org/sites/default/files/UNDG_BigData_final_web.pdf”