Neurodiversity - from awareness to action...

Neurodiversity – moving from awareness to action

For those working on a cause that they care deeply about, the first instinct is often to make sure that as many people as possible are aware of the condition/situation. Once they know that we assume they will know what needs to be done.

I am remaining as keen as ever to tell as many people as possible about the social framing of neurodiversity and specific conditions relating to neurodivergent traits. I have been campaigning for the past 30+ years and still hope to make others see why it is so important to do so. The reasons for me are both personal and professional.

Recently, I have been thinking about how we move from awareness to long-term inclusive change and what makes action happen.

Let's start with awareness

Welcome to XXX day/week or month. There is a day for everything. Check them out!

Are you 'woke' enough?

We will have heard of the word being used. But I wasn't quite sure what the word meant and had to look it up! To be woke means that you have an active awareness of the major issues of the day, you’re ‘awake’ to all of society’s troubles and injustices.

Communication theorists have described an?Information Deficit Model . This was a term introduced in the 1980s to describe inaction as a consequence of a lack of information. It concluded that if the public knew more, they would embrace the information and change would happen and consequently their behavior. As a consequence, there have been ever-increasing numbers of awareness days. In the last couple of years, there are days for Dyslexia, ADHD, Autism, DLD, Tourette's, DCD/Dyspraxia also and neurodiversity.

What's the goal?

If the goal is solely to increase knowledge of an issue, then awareness campaigns can work just fine. They can certainly bring a focus to a topic, but they can also result in a sense that the work has been done for this year, and let’s plan for next year if they don’t have a call to action and a commitment for change. It can otherwise feel like a tick box exercise. Simple messaging which while being impactful can miss the nuances of the topic at hand. It can even be seen as a case of a company "virtue signaling”. This can be defined as an attempt to show other people that you are a good person/organization.

In the book I wrote last year with Theo Smith: Neurodiversity at Work , we explain why some people don’t gain the support they need to be able to exploit the talents they have. This is an essential part of understanding what neurodiversity in the workplace is all about.

We need to consider all stages of our recruitment processes and be critical about our interviewing and onboarding processes. How do you understand and reach people you are not speaking to or engaging with at the moment? You never know who hasn’t applied for a job in your organization.

In someone’s neurodiversity blog I read recently it started off with: ‘Neurodiversity is the next big thing’. The challenge when we say someone like this is that it could result in being next years old thing! We become immune to the rationale for learning about neurodiversity ( and the complexity) because we believe we have heard it all already.

Jumping on the bandwagon

There is a collective behavior to model what we see others doing and a pressure to impress. So when one organization jumps on board with an awareness day/( or unconscious bias training...) then others think they need to follow in the same way. This is called the bandwagon effect.

The bandwagon effect is a cognitive bias that causes people to think or act a certain way if they believe that others are doing the same. This effect together with the behaviors that are associated with it, such as following the crowd and popular trends can be attributed to several psychological causes.

One cause is the tendency for us to conform with others out of a desire to fit in with the crowd and gain approval from others. We don’t want to be the ones to miss out if everyone else is going to the party. Another cause is informational social influence. This represents the tendency to conform with others out of a desire to be right.

Being first to the party may represent that you know more than others and also the assumption that others may know something that you don’t, so you better jump in quickly and express your opinions.

Can there be too much awareness?

There is a sociological theory called narcotizing dysfunction. This proposes that the more people learn about an issue from the media, the less likely they are to do something about it. The public can?become apathetic and fails to act on the information, irrespective of how compelling the issue is. If you keep reading, again and again, the word neurodiversity, do you stop reading the content because you believe you already know about it?

When we measure the impact of awareness, we are often really pleased by the impact. Our metrics may be ‘bums on seats'. I remember an evaluation form asking about the lunches and teas at one conference and it made me laugh considering this was as important as the content of the conference. We even had a discussion about the findings and whether peppermint tea should have been on offer or not.

We also often focus on the short time impact after the campaign but do not really consider if there has been a long-term and sustained change. I think what we want is to create a truly inclusive workplace. This may need a shift to consider our systems, leadership , and the values of an organization for the change process to really happen and be sustained. If we are really committed to inclusive practice then we need to see how we engage all in society who are excluded by our processes ( and have the talents and skills to be in our workplaces) and not decide we favour some over others. This is a social movement in many ways as those excluded often also don't come with a diagnosis for differing reasons.

?In undertaking my research for this blog, I came across something called the?“backfire effect” . This effect happens where their polarized viewpoints between people. ?If our language is divisive ( not with intent) are we potentially creating a sense of 'othering' and could this lead to more polarisation?

Terms such as ‘the neurodivergents’ and ‘the neurotypicals’ I believe define people as in one group or another. It is far messier than that. It also assumes that people who are neurodivergent are an amorphous group with similar challenges and strengths, that doesn't change over time or in different settings which is clearly not true.

Any initiative that increases understanding of social injustices has to be a positive thing if it results in a change in practices. There is evidence of social inequality relating to neurodiversity . Children on free school meals are less likely to get diagnosed with ADHD; children excluded from school are not routinely screened for neurodivergent traits despite higher levels of conditions such as developmental language disorder (DLD)and ADHD.

( See my past blogs for more evidence for this)

To truly move the needle on neurodiversity we need to define actionable and achievable calls to action that will lead a specific group of people to do something they haven’t done before. We need to have inclusive and universal practices in place. My friend and ally Atif Choudhury talks about the need to create anticipatory welcomes. This means being prepared we will have people applying who will be neurodivergent and not waiting to retrofit.

Going from awareness to creating lasting change

When writing and speaking about neurodiversity a lot of the time I provide information about the meaning of words currently being used, and our understanding of them we have now. I often explain the concepts of neurodivergent traits ( how they often co-occur), how people are diagnosed, why they are missed or misdiagnosed, what challenges and strengths people have, and ways to provide practical support that is not label led but about optimising function. This is a pathway of change rather than seeing awareness as a destination in itself.

Neurodiversity Maturity Gap Analysis - an Index to measure change

I have, alongside the team at Do-IT, devised a web-based neurodiversity maturity gap analysis tool that helps organizations to help map a pathway to becoming neuroinclusive. It generates an action plan with guidance and resources. Being truly neuroinclusive may take a few years to achieve but if planned will have a lasting impact.

What can you do to make neuroinclusive change?

1.????Decide first why you are doing this and what you want the conclusions to be. This planning phase is an important one if you want lasting change in your organization. (Contact my team if you want to talk about this in more detail.)

2.????Develop a comprehensive understanding not only of the people in your organization you are trying to reach but also consider what will resonate with them. Consider what is important for all to take this on board. Have you parents of children who are Neurodivergent? Have you people in the organization who can tell you about their own experiences both good and bad? Consider awareness developing over time. Neurodivergent traits often co-occur and so it is important to explain that people don't usually come neatly boxed. A ‘simple’ talk on one condition such as Autism may not make a change and may also not provide sufficient information relating to co-occurrence. But it may be a starting point in a longer process.????????????????????????????????????????????????????????????????????????????????????

3.????Craft your messages, stories, and calls to action that can be understood and create values. Considering how the people in your organization form opinions and who influence them will also drive your communication strategy and will make a real difference to lasting change.

4.????Consider the impact of the awareness sessions for the people who are neurodivergent in your organization; the ones who may be worried about sharing this information, or someone just started within the organization? What do they feel after a session? Have they been involved? Could they be intrinsically involved in your plans as they have a first-hand understanding of your organization? Have you a defined pathway for actions?

5.????Create a road map for how you will achieve change that includes objectives, tactics, and evaluation.

6.????Tie your communications strategy to a theory of change helps ensure that your communications efforts are tied to overarching goals, not simply focused on promotion or awareness. Building a strong theory of change requires the same elements that a solid, action-oriented communications plan does: a clear goal, a clear understanding of what will be different and what will cause it to change, and an understanding of what will influence people to act.

7.???Consider who is influential in your community and whom people trust for information. To inspire and persuade people to adopt a new way of thinking, messages must come from people who have authority and credibility in the context of your organization. Social psychology tells us that if a call to action asks someone to do, believe, or represent something that runs counter to how they see themselves or poses a risk for maintaining that vision of themselves, then they are not going to even entertain the idea.

Neurodiversity awareness is increasing which is great. What we need to do is to make sure the efforts we are putting in have a lasting change that is embedded in all we do.

There is a need for training. But I believe, is not about diagnosing people at work. In the workplace, it is about increasing access to talent, maximizing productivity, and, creating a sense of belonging which in turn promotes improved wellbeing and aids retention.

Blog author

I am the CEO of?Do-IT Solutions, ?a tech-for-good company, and a Professor in the field of Neurodiversity. Do-IT provides web-based tools to help understand neurodiverse spiky profiles and help with wellbeing as well as undertaking training and consultancy with organisations. I am also part of a very diverse family where many of us are anxious a lot of the time!?