Informative

One Girl’s Journey On The London Underground

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Hello folks! Welcome back to I Don’t Look Autistic after I took a brief break to study for some exams I didn’t want to fail! Thank you for being patient with me so I can sort out my life! This particular post has been planned for a couple of months and I just never got around to writing it, but I decided that today is the day. I’ve used the term “neurodiversity” a few times, and a brief description is given here, but I wanted to examine it in more depth. Let’s take a look at this word together.

First and foremost, to be ‘neurodiverse’ is to not be ‘neurotypical’. Neurotypical people are the majority, and they have what is considered a “typical” or “normal” brain, a.k.a. they have no neuro-differences. Neurodiverse people, or individually a neurodivergent person, have one or more of 6 conditions: Autistic Spectrum Disorder, Attention Deficit (Hyperactivity) Disorder, Tourette’s Syndrome, Dyslexia, Dyscalculia, and Dyspraxia. I want to add here however, that there is some discourse as to whether these are the only conditions that should be put under the neurodivergent label, as intellectual/learning disabilities, acquired brain injuries, and other conditions are sometimes listed and sometimes not. That being said, it should be noted that it is (almost) universally agreed that mental health conditions are not forms of neurodivergence and are a separate group of conditions.

The question as to why mental health conditions aren’t included is a little tricky because it’s hard to draw metaphorical lines under conditions and define them as one thing or another. Conditions often co-exist and certain traits may be found across various neurodivergent conditions and even some non-neurodivergent conditions, and so sorting them into two neat piles is hard. However, as a general rule, neurodiverse conditions are considered to be an innate difference in a person’s brain structure present from birth, whereas mental health conditions develop at some point in a person’s life often as a result of environmental factors, even if said condition does alter the brain chemistry or structure.

All these neurodivergent conditions have a unique blend of traits and skills that comprise the condition, and while there are certainly similarities between some of them —autism and AD(H)D are often compared— they are all separate diagnoses. Any overlap between traits does not detract from the validity of the individual conditions. I am autistic, and while my friends with AD(H)D and I do have some common traits, I am still autistic and they are not.

I don’t wish to go into all the nuances and differences between the conditions, partly because I could be typing forever, and partly because I’m not entirely sure myself. I consider myself somewhat of an ‘amateur expert’ in autism, simply because I exist ‘autistically’ and have spent a lot of time reading about and researching the condition; not to mention examining my own life and how being autistic intertwines with who I am. However, I am certainly not at the same level of understanding for any of the other conditions. In truth, I am rather ashamed to say that my knowledge is considerably lacking when it comes to the other neurodiversities. I know the very basics of AD(H)D as two of my best friends have the condition, however, I’m far better equipped to talk only about ASD.

Whether being neurodiverse ‘counts’ as a disability is usually up to the individual. I consider myself to be disabled as being autistic massively affects my day-to-day life, and makes living in the world much harder. That being said, I like being autistic and wouldn’t change it if I could. Thus, I consider myself both disabled and happy in my disability, a combination that seems to flummox many people. I’ve found ways to adapt and cope with life, and this has both proven the existence of, and advanced my skills in problem solving and creative thinking. As I grow up (I’m still only 21!) I’m learning new methods of managing the condition, as well as finding parts of it that I love and reaching goals that I didn’t think I could. I got on the tube all by myself the other day. It might not sound like a particularly impressive feat, but compared to the first time I tried with my family and I cried for several minutes in the station after getting off, meaning my family unanimously decided to stick to trains and buses whenever I’m there, THIS WAS HUGE! I took the Bakerloo line 7 stops, from London Paddington to Charing Cross. It was difficult and I wouldn’t be able to do it if I was tired or stressed, but managing it in the first place opens up a new world of possibilities for me. Tomorrow I’m meeting a friend in London to practise getting the tube again, and I’m going to take the opportunity to work out the best way for another person to support me in my quest to get around London.

This small new skill has brought me a strange confidence in my abilities to live an independent and happy life. 2 months ago, getting on the London Underground seemed an insurmountable problem, whereas now it’s very much surmountable! Sure, it’s hard and I have to expend a lot of energy to do it, but if I can do something I assumed was out of the cards for me (is that the phrase?), it follows that there will be other experiences in my life—previously thought impossible—which I will be able to manage. Personally, I’m hoping that one of those experiences is being able to perform in a local community musical, as it is my life’s ambition to play Inspector Javert from Les Mis. If there aren’t any opportunities for this however, I will settle for continuing to sing the songs of angry men around the house. (That was a great Les Mis joke, in case anyone hasn’t watched the film/musical.)

Another point I wanted to raise is that while I cannot understand what it’s like to have any of the other neurodivergent conditions, in my experience (and I use that phrase understanding the caution I must take in not speaking for others), I get on well with those with other conditions aside from ASD. As I said before, two of my best friends have AD(H)D, and the combined effect of our brains is really rather wonderful. We have enough in common that we are able to relate to each other, but the challenges that arise from our respective conditions rarely overlap. I’m not saying that neurodiverse people should rise up and overthrow the current regime using the power of teamwork and mutual respect… but I’m also not ruling it out.

There is much more to be said about those with multiple neurodivergent conditions, but given I only have 1, it isn’t my place to speak on it. And although I was clear earlier in the post that mental health conditions are considered separate from neurodiversity, the proportion of neurodiverse people with some mental health condition is really high. One example is the prevalence of depression in autistic people, with one paper finding that “compared to typically developing individuals, individuals with ASD are 4-times more likely to experience depression in their lifetime” (Hudson, 2019).

Again, there is some debate as to whether being neurodiverse makes a person more susceptible to mental health conditions, or whether the increased rates are due to problems caused by a lack of support or inclusion from the wider community. I would be inclined to lean towards the latter, but the understanding of both mental health conditions and neurodivergent conditions is ever changing. Perhaps there is a link between the two. (We won’t touch on how the word “autism” was originally borrowed by Leo Kanner from the Swiss Psychologist Bleuler who was using the word in reference to schizophrenia. That is for another time.) However, instead of searching for said elusive link, research can be done on helping those struggling. To be blunt, I don’t care much for the research focused on finding out the causes of ASD or any other neurodivergent condition. It’s commonly dehumanising and sometimes strays a little too close to eugenics for my liking. Given that we exist anyway, why not find ways to help those of us already here?

Lastly, there has been some discussion online about the use of the term “neurodiversity” and who can use it. I may be about to get myself into trouble as my stance doesn’t seem to align with some people that I see. With regards to self diagnosis, it is something I support 100%, as it can be expensive, difficult, or downright impossible to get a diagnosis. However, I do not agree with those who use the term “neurodiverse” to describe themselves when they do not have a diagnosis of, nor believe they have one of the conditions that falls under the umbrella. I don’t love the replacement of the word “quirky” with “neurodiverse”. (Or other words with a similar meaning.) It feels slightly diminishing to those with the conditions, and while I understand that human brains are complex and difficult to categorise, I believe that unless you have metaphorically walked the walk, you shouldn’t talk the talk. Maybe this sounds as though I am attempting to gatekeep the term, and that is absolutely not my intention. I think there is lots of room to expand the definition, include other conditions, and generally update our information. My issue here lies with those who enjoy using the term—potentially for clout?— without actually experiencing the reality of being neurodiverse. If I may compare it to a person using the term “chronically ill” when they only experience mild hay fever in the spring, you may understand where I am coming from. Having some traits in common sometimes occurs because neurodiverse people are still people. If you genuinely think you have one of the conditions then no worries! This doesn’t apply to you! If you are just in the “not like other people” phase that so many of us unfortunately go through, then please consider your words.

Well, that ended on a more depressing note than I intended! I originally planned on this being a more upbeat post, celebrating my triumph over (or I suppose under?) the London tube! Let’s just think about that for a bit and wonder what goals we will all be achieving in the future! Getting the tube was a massive step for me! Previously it had taken me 2 years before I tried getting off the bus on the way to school at a different stop that I thought might be better. The difference was only marginal but it meant I didn’t have to cross another road, and yet I took 2 whole years before committing to trying it out. I won’t say that it revolutionised my life because that would be a lie, but it was a small achievement which I built up to. New bus stop one day, getting the tube the next! (Actually it was many, many days later, years even, but that doesn’t sound as good.) Perhaps you have a similar situation you are working towards? If so, please let me know either by commenting on this post or on social media! I am intrigued to find out.

Sarah

Hudson, C.C., Hall, L. & Harkness, K.L. Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: a Meta-Analysis. J Abnorm Child Psychol 47, 165–175 (2019). https://doi.org/10.1007/s10802-018-0402-1

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