Welcome to the second blog in our long read series ‘Being Seen’. This time we focus on Neurodivergence.

For this series, staff at Inclusion Barnet get together to discuss their lived experiences of being disabled. The aim is to provide insight into the barriers we face, share tips with other people living with similar challenges, and suggest ways that everyone can be more effective allies in the fight for equality.

In the first blog, staff who are wheelchair users shared their experiences and advice. This time, Neurodivergent staff share their insights and suggestions.

What we mean by neurodivergence

Neurodivergence covers anyone whose brain works differently from most people (or neurotypical people). Differences in how the brain works include autism, attention deficit disorders (e.g., ADHD), anxiety, dyslexia, dyspraxia, and more.

What it’s like to be neurodivergent

People with neurodivergent conditions can often have more than one of them at the same time. For example, an individual may be autistic and also have ADHD and dyslexia. As members of our group mentioned in the discussion, some of these conditions can make it hard to do certain things. Examples of this might be staying focused, interacting with others, or understanding information that is shown in a certain way.

A condition can range from one individual to another in how severe or complex it is. It also might not always be obvious to others that a person is neurodivergent.

Even with the same condition, everyone experiences it differently. One member of staff with ADHD explained that they were unable to stay focused, while their friend with ADHD found their biggest challenge was restlessness.

Autism is also complex as it can affect people in any different ways. These include affecting someone internally (how they feel) and externally (how it affects their daily life). For instance, one person might not be able to attend a noisy event due to sensory overload while another may be more affected by the anxiety of a new scenario.

This is where reasonable adjustments can make a huge difference. In this case, something as simple as the host of the event providing a quiet side room for breaks or a clear itinerary and agenda could be enough to enable them to participate.

Why some people describe themselves as neurodivergent rather than naming their condition

One benefit of using the word neurodivergent is that it can take away the need to share or explain your difference to others, especially for those experiencing more than one condition.

As one member of our group explained: “In many cases, simply explaining that I am neurodivergent can be enough. It gives them the opportunity to factor in or respond to any request for a reasonable adjustment. They don’t need to know, and I don’t want to discuss my personal medical information. It helps me to move the conversation forward more quickly and keep focused on the task at hand.”

For some people, it’s personal preference as to whether they share their diagnosis or not but for those without a diagnosis, it’s not an option.

Getting a diagnostic test for neurodivergence can be expensive and involve long waiting times. Saying they are neurodivergent enables a person to identify as this without having to wait years for a diagnosis.

Another reason a person might not name their condition is the impact of intersectionality. Intersectionality is about how different parts of your identity. Different things such as age, race, or financial status, can create advantages and disadvantages for you.

In some cultures or peer groups, there also might be a stigma around certain conditions. Describing themselves as neurodivergent instead means people can still be part of their community and get vital support without having a specific label.

Why masking is unhelpful for everyone

Like many disabled individuals, a lot of neurodivergent people have spent their lives masking (hiding or suppressing) some or all their behaviours. They find they have to do this to fit into a society designed for neurotypical people.

Masking in this way can create misunderstandings. For example, at work it can give the impression that someone who is neurodivergent can easily complete tasks which they may actually find very difficult.

One member of staff with ADHD spoke of the strain of masking: “Doing this over an extended period earlier in my career left me feeling like a fraud, like I was not good enough to do my job. As it became increasingly difficult to hide (my condition),  I ended up working in the evenings to catch up and fill the gaps. It was exhausting. Eventually I burnt out, went off sick, then handed my notice in. My confidence was in the gutter.”

Working in organisations such as Inclusion Barnet, where reasonable adjustments are normalised, means that neurodivergent staff can get the support they need. Often, simple adjustments such as supplying an extra computer screen or providing copies of slides in advance of meetings can be enough to turn things around.

As one group member put it, “Organisations that fail to create space for conversation around neurodivergency and reasonable adjustments risk missing out on the full potential of neurodivergent staff. In short, everyone misses out”.

How our staff with neurodivergence prefer to be seen

We talked about how neurodivergence varies from one individual to another, as well as within each person themselves. This can make it difficult to sum up how a specific condition presents itself.

Members of the group said they found it frustrating when others oversimplified their conditions, perceiving them as being one extreme or another. Examples included always being full of energy or never able to focus. They agreed it was much more supportive when others recognised behaviours can vary and when others asked what they needed as a reasonable adjustment, rather than making assumptions.

Perceiving their diagnosis as purely positive or negative was also a common problem: “I don’t want it to be black and white, as in you’re either incredibly troubled by it, or you’re talented and gifted”.

The qualities that make a person neurodivergent can enable them to offer different perspectives to that of a neurotypical person. They may have strengths that others might not possess and therefore bring a complementary skillset to a team or project. As one person in the group identified: “the positive side of being easily distracted is that you’re curious. So, you will look at things within a bigger picture”.

Which is correct: Neurodivergence, neurodivergent or neurodiverse?

Neurodivergence and neurodiverse

Often used interchangeably, these are ways of referring to people who differ from the majority in how their minds work e.g., “At Inclusion Barnet, we celebrate neurodivergence because we believe that embracing our differences creates a more inclusive and innovative society” Or “Many researchers believe that a neurodiverse perspective can bring valuable insights and creativity to problem-solving”.

Neurodivergent

An individual can be neurodivergent, e.g., “I am neurodivergent / They are neurodivergent”.

Neurodiversity

This term includes everyone, as it describes the range of human minds in existence e.g., “At Inclusion Barnet, we are proud of our inclusive work environment, celebrating and welcoming the unique perspectives and strengths that come with neurodiversity.”

How to be an effective ally to neurodivergent people

At work

The group agreed that one key thing needs to be in place for them to thrive at work: an inclusive, open-minded environment. This means creating a workplace where staff feel comfortable discussing reasonable adjustments. These include finding the best communication methods that work for everyone.

For example, an employee who struggles with understanding subtle cues might benefit from having a detailed job description, clear Key Performance Indicators (KPIs) and dedicated time set aside to ask clarifying questions.

In everyday life

Asking about a person’s diagnosis and how it affects them is not actually helpful. As mentioned above, it can be difficult to explain the complexity of being neurodivergent.

Instead, asking how you can support in practical ways, and following through with the person’s request is far more effective. It can help a neurodivergent person to feel safe enough to stop masking and be themselves. This way you can both get the best from the relationship or interaction.

Equally, the group stated that neurodivergent people would benefit from being assertive about their needs, even though this can be difficult.

For example, one staff member told her gym instructor that she was neurodivergent and struggling to follow a lot of new instructions at once. He responded patiently, breaking the steps down and checking if that worked; “I felt encouraged that most people are understanding and want to get it right”.

Things to avoid

Opening up about being neurodivergent can be incredibly difficult. One of the most discouraging things is to encounter dismissiveness from others.

As one member of staff recalled; “when I talked to my aunt about the impact ADHD had on my life, she simply said, ‘Everyone experiences that to some degree.’ It minimised the significant impact it has on my day-to-day life”.

Similarly, another person commented on the normalcy of self-deprecating jokes about dyslexia, and a third person on hearing frequent, dismissive remarks about autism being a “spectrum” that everyone is on.

These comments are not only unhelpful but also damaging, as they discourage individuals from seeking understanding and support. They can even push people back towards masking, leading to increased isolation and emotional exhaustion.

How can you be a good ally?

According to our group, being an effective ally comes down to one key thing: open-mindedness.

Instead of dictating solutions, consider how you can ensure everyone feels included in social activities. How can you recognise and play to everyone’s strengths in the workplace? How can you create spaces where everyone feels comfortable to be themselves?

By staying open to different approaches and perspectives, we empower others and pave the way for a more inclusive and equitable world. A world that would ultimately benefit us all.

Useful resources

Below are some of the resources and social media accounts that our staff have found helpful.

Important: The resources shared here are for informational purposes only. They do not constitute professional advice, official endorsement, or any form of legal or medical guidance.  

Leanne Maskell on linkedIn on ADHD.

@livedexperienceeducator on Instagram on Neurodivergence.

@neurodivergent_lou on Instagram on Autism.

Open Future Learning on Twitter on learning disabilities and support.

Reframing Autism, an Autistic-led charity in Australia, offering a range of resources including how to be a great ally to the Autistic community.

 

Featured image by Sketchepedia on Freepik.