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Neurodiversity

Why the Right Term Is Empowering for Neurodiverse People

Many neurodiverse people are labelled negatively throughout their lives.

Key points

  • Neurodiverse people are often labelled as "weird", "odd", "stupid" or "different".
  • When they seek out a diagnosis or self-diagnose, they are often met with ridicule or dismissal.
  • The right term can feel empowering and aid self-understanding and self-acceptance.

"You don't need a label", "Too many people these days have labels", and "I don't see how a label of autism/ ADHD is going to make any difference to you" are common responses from friends and family when autistic people share their desire to seek out a diagnosis or when they choose to self-diagnose.

Responses of this kind usually seem dismissive to people who have often spent a lifetime feeling "different" from others and struggling to get through life, no matter how good they are at hiding their struggles.

In an ideal world, it would be great if we could all accept ourselves as we are, flaws and all. But the reality is that others already label autistic and other people who identify as neurodivergent, often from a very early age. And those labels are usually hurtful and destructive.

Brianna shared with me that she was labelled as "hyper-sensitive" from an early age. Like many autistic people, she experienced an intense emotional response to criticism from others and to other people's (and animals') pain or distress. "I was always told I was 'too sensitive', and it was dished out as an insult. It shut me down. Those same people think I'm ridiculous for seeking out an autism diagnosis as I 'don't need a label'. But I've already been labelled my whole life".

Daniel told me that he'd always considered himself "stupid" because of the struggles he faced in school due to having undiagnosed autism and dyslexia. "I didn't do well at school, and at that time, there was no support or understanding. I was the 'stupid' or 'dumb' kid. I've had a great career later in life, but those names stick. When I was diagnosed with autism and dyslexia, I finally had a label that explained everything for me".

Jo shared that having the correct term to describe herself as "feeling incredibly freeing and validating. I've been called weird, shy, odd, scatty and socially inept for as long as I can remember. Knowing that I'm AuDHD gives me a term that is rooted in something real and which is rooted in knowledge. It's important for me to have a word to describe the differences that everyone else has picked up on anyway, but to do so in a way that means something positive".

Suggesting that neurodiverse people shouldn't be allowed to assign a term to themselves that helps them make sense of their experience is an effective way to silence them. Ridiculing or questioning someone's need for a term to describe their experience places them in a disempowered position. People don't adopt terms such as autistic, ADHD or neurodivergent for no reason. They adopt them because the term helps them make sense of their experience, identify with others who have similar shared experiences, and find a clear and straightforward way to explain what they are experiencing to other people.

Rita shared that when she told her family she was seeking out an autism diagnosis, they responded with a mixture of bullying and ridicule to the extent that she put off pursuing a diagnosis for another 10 years. "My mum was angry. She hated the idea of me having a label of something being wrong with me, despite telling me that I was less loving and less amiable than my sister. My sister just laughed and came out with the usual comment about me 'being a bit odd' but that I should just get on with it. I felt embarrassed that I'd even brought it up and went through hell with job problems and mental health issues, all met with the usual comments from my family, for another ten years before getting a diagnosis that has completely changed how I feel about myself".

As Rita's experience shows, another consequence of stalling people in their pursuit of a term that describes their experience is that it allows for a continuation of all those insulting terms they've been subjected to over the years.

Sometimes, people's need for a term to describe their experiences, which may start from the point of self-diagnosis or following an autism assessment, has very little to do with other people. I discuss with my clients who have been assessed as being autistic who they plan to share the news with. Some plan to share it generally with friends, family and colleagues, whilst others plan only to tell their partner or a single family members. Sometimes, people choose to keep their news private, at least for now. Far from looking for a "label" to publicly display, having an umbrella term to explain a lifetime of difference is deeply meaningful for them at the most personal level.

Research backs up what my clients tell me, including showing that a diagnosis of autism in adulthood leads to greater self-acceptance and self-understanding.1, 2

If you're in the process of seeking out a diagnosis, have chosen to self-identify as neurodivergent, or are having initial discussions with friends or family, it's important to stay focused on what you feel you will gain from having a term that encompasses your experiences. If it feels like the right course of action, don't allow yourself to be stopped or silenced by others.

References

1. Lilley R., Lawson W., Hall G., Mahony J., Clapham H., Heyworth M.,. . .Pellicano E. (2022). ‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood. Autism, 26(6), 1395–1408. https://doi.org/10.1177/13623613211050694

2. Powell T., Acker L. (2016). Adults’ experience of an Asperger syndrome diagnosis: Analysis of its emotional meaning and effect on participants’ lives. Focus on Autism and Other Developmental Disabilities, 31(1), 72–80. https://doi.org/10.1177/1088357615588516

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