What if my neurodivergence does not fit a label?

Don’t worry! You are not alone.

Here are my thoughts on this:

You do not have to “qualify” for a diagnosis to be neurodivergent.

For quite some time, I identified as neurodivergent without feeling like I met diagnostic criteria for anything much. In the past I have had diagnosed depression, and have needed treatment for that. I had recognised some sensory sensitivities. I semi-jokingly said “I am Neurodivergent NOS”. There is a large amount of irony in that, of course. As anyone who understands the concept of neurodivergence will know, pathologising the way brains work is neither necessary nor desirable.

The NOS is a reference to the medical diagnostic phrase ‘Not Otherwise Specified’, which is used to say ‘we think there is something not quite right with you but you are not quite wrong enough to be diagnosed with something specific in this category’ (my paraphrase).

Neurodivergent, for those who may not be familiar with the term, is a word coined by Kassiane some 5 years ago on her blog “Radical Neurodivergence Speaking” that has become an important part of the language used to explain the Neurodiversity Paradigm.

Neurodiversity is the naturally occurring variation in human brains. I’m not going to waste words here explaining the Neurodiversity Paradigm, mostly because Nick has already explained it very well. Please read his article Neurodiversity: Some Basic Terms & Definitions if you aren’t familiar with the concept of Neurodiversity.

Even though it is actually a nonsense Neurodivergent NOS felt like the best fit for the thoughts in this article when I originally wrote it, because it accurately reflected the stage I was at in recognising my own neurodivergence and attempting to relate what that meant, and how it affected me, to other people.

Neurodiversity, the naturally occurring variation in human brains, is a fact that I doubt many would try to dispute. Most of us are happy to agree that we are all unique individuals. Acknowledging that, it seems strange that neurodivergence is not something that is valued, but there is much evidence that it is not. As a society, we value conformity, predictability and compliance way too much. The result of this tends to be that those who are noticeably neurodivergent end up categorised by medical diagnosis, given a label and placed firmly in a minority group ready for marginalisation.

There is much value, though, in knowing your community, your tribe, those like you who will understand your struggles and your achievements. Labels are not “bad” as such. They can be quite helpful, especially in helping the marginalised find their place of support.

But what of those whose neurodivergence is more than allows them to feel part of the mainstream but not enough to make them stand out enough for categorisation?

The Neurodivergent NOS?

This is something I had been wondering, as I explored what it meant for me to be neurodivergent, but not diagnosable. I identified as a non autistic parent to autistic children. I am a non bipolar wife to a bipolar husband and mother to a Bipolar daughter.  A sometimes anxious mother to a permanently anxious son. I can relate to many of the things they find difficult: sensory overload, depression, general anxiety, specific anxiety, the need for isolation, the feeling of not fitting in anywhere, difficulties with language processing, the need have things a certain way to cope with change. Yet their challenges are theirs and I cannot claim to know what their life is like. Their difficulties are significant enough to warrant diagnosis and extra support. Mine I felt were not significant enough to meet any diagnostic criteria, and for much of my life I had not needed extra support ….. or so I thought.

And this is where it gets a bit tricky. Because hindsight is a wonderful thing. And because there is no way to know what might if been if it had been different. But I can say for sure that I believe if I had known then what I know now I certainly would have responded to what my body and my brain were trying to tell me over the years about how I work and how I can best care for myself.

I have known for years that I am prone to depression. Looking back I can easily identify 3 periods in my life where my depression dramatically interfered with my ability to function well, and countless times when my default position of floating on the edge of depression interferes with my ability to function in lesser ways.

I now recognise that I experience sensory overload. I need regular ‘down time’ so that I do not feel overwhelmed by sound in particular, and by touch to a slightly lesser extent.

I have a very very busy brain. I fixate on things and my mind won’t rest until I have dealt with whatever it is processing. I find resting difficult until I am exhausted.

Although I appear confident and outgoing in person, and in writing, I am not particularly. I rely on some well practiced scripts to get me through social situations. I find being with other people extremely difficult. A day out with friends will need to be followed by a few days at home in order for me not to end up in a state of overwhelm that can trigger depression. That is not to say that I do not enjoy time spent with friends and family, I absolutely do! I am just saying that it comes at a cost.

I ‘disappear’ and take regular breaks from social media interactions in order to look after myself.

Yet I have no medical diagnosis that explains all this to you. I didn’t feel I could just say “I am this” and have you understand what I experience and what support I may need. I did not fit into a neat little group ready to be stereotyped, which is not a bad thing, but also left me without a specific community to belong entirely to. All I could say is “I identify as being neurodivergent”, and be content to exist for the most part on the fringe of a few different communities. But without a diagnosis, I was often assumed to be neurotypical.

The thing is I do not want to have to give a label in order for it to be accepted that there are things that I struggle with and would need extra time to process and deal with. I do not want to have to name a diagnosis to be considered credible when I talk about advocating for neurodivergent people. I do not want to have to justify why it is hard for me to do some things that others don’t find hard. I do not want to feel like people think it is OK for me to ask for accommodations for my kids but not for myself. I do not want to be looked down upon because I do not have a diagnosis to use as my credentials like a list of letters after my name.

And this is the crux of the issue for me, and why I chose then to use the ironic term Neurodivergent NOS to refer to myself. When someone says they are neurodivergent, no matter what that neurodivergence is, we should be able to support each other without requiring credentials to be displayed.

As members of various minority groups we do all have some things in common. Does it matter if my neurodivergence is the same as others? Does it matter if my neurodivergence is labelled at all?

When so many of us are rallying against anyone being pathologised and othered, there should be no requirement that people do that to themselves in order to have credibility.

Things have shifted for me since I first published these thoughts. With the support and acceptance of my autistic friends I have begun to identify as autistic.

I am not “diagnosed” by a doctor or professional, nor will I be. I still do not need to pathologise myself to know my identity. I still believe and advocate that not otherwise specified neurodivergence is a valid reason for requesting support. I still own the neurodivergent identity that started me on this journey, and feel kinship with anyone else who claims that identity.

Neurodivergent NOS gave me the gift of becoming comfortable with myself and allowed me to continue learning until I realised I am not as NOS as I had thought. For you, Neurodivergent NOS may be part of your journey where you rest for a short while or for a long time.  Neurodivergent NOS  may be the place you stop and become comfortable with yourself. It makes no difference to me. If you are neurodivergent you are welcome here, without qualification, without expectation.

6 thoughts on “What if my neurodivergence does not fit a label?

  1. Pingback: Assumptions |
  2. mandasuepmdd says:

    Thank you for this. Thank you a million times. My father and sister have both self-diagnosed as autistic, and while I believe that term fits them perfectly, I’ve been hesitant to apply it to myself. For the time being, “Neurodivergent NOS” will be my label.

    Liked by 1 person

  3. Alcuin Edwards says:

    Thank you for this. I have a diagnosis. I have several and I am more neurodivergent than the sum of my parts. I was diagnosed with cerebral palsy at age 9. Then with Meniere’s disease (I believe wrongly) at age 39. Then finally at 53 with temporal lobe epilepsy at age 54. (I was also diagnosed with schizophrenia but this diagnosis was withdrawn because of the epilepsy). So, definitely neurodivergent, just not sure exactly how.

    Like

  4. Peet says:

    This is an important question, and one that’s bugging me more than a little. I’m not seeking categorisation, or membership of a ‘tribe’, but I do know that I am quite different from ‘normal’ people. I can certainly relate to your experience of ‘sensory overload’ and needing my own time and space. I don’t do any (anti)social media, I don’t have television, and I know nothing about football.

    I always score 35-40 and/or ‘neurodiverse’ on Aspie tests, but I am not affected by the physical awkwardness usually associated with Autistic Spectrum conditions. I’m actually physically well coordinated. However, I do identify with most of the psychological/emotional/intellectual characteristics. I do think in pictures and diagrams, and I do have a massive database of mental maps that I can switch on in last saved state and update instantly with new sensory data. Perhaps I have never lost the eidietic faculty, because I can remember events back to 2yo in full vivid detail.

    In a world where tags and handles do have a place, Neurodivergent NOS seems fair enough.

    I just watched a Temple Grandin presentation on TED. She is amazing. What she says sounds so right to me. I may just have to get her book ‘Thinking in Pictures’.

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  5. Jana says:

    Thanks for this. I’ve often said that I was “configured differently” or “wired differently” but without a name for my specific differences it can be hard to talk about with others. But I do identify as neurodivergent “NOS”… I have days in which language doesn’t work for me. It’s not simply forgetting words, but it is like seeing language from a distance and not being able to reach it. People get impatient with me and I can’t explain why I’m not saying anything…because of course I can’t say anything in those moments. I also have many differences that I love–it’s been an adventure living in this world with a different brain and body.

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