“It’s not like you’re actually autistic though…”

I was diagnosed with autism spectrum disorder nearly eighteen months ago now, at age twenty two. I had intense involvement with the Child and Adolescent Mental Health Service (CAMHS) from fourteen years old due to severe depression and psychosis (to name but a few) and it was mentioned by professionals quite early on that they thought I was on the spectrum. However, due to the other issues that were impacting my life more severely at the time, a diagnosis wasn’t pursued. There was also a massive stigma surrounding me being diagnosed with autism within my family, purely because it wasn’t really understood. A lot of people did (and some still do) don’t believe that I can be autistic because I don’t meet their stereotypical version of what autism is.

In the media especially, autism is portrayed as being one of two things- either as “high functioning” (i.e. clever, but considered “odd”) or as being “low functioning” (i.e. unable to communicate verbally or live independently). The difficulty is with both media portrayals and labels such as high and low functioning is that it completely misses what autism is- a spectrum. The terms high and low functioning aren’t particularly helpful, and can be considered as quite offensive to some autistic people and their families. For example, person A may be considered low functioning as they are unable to verbally express themselves and have little perception of danger. However, they may have no problem in making friends, and can cope with flexibility in their routine. Whereas person B may be the complete opposite, yet is considered high functioning. This in particular can be problematic as it undermines the difficulties that a so called “high functioning” individual may face.

The image on the right shows the sliding scale diagram that most people will think of when talking about autism, whereas the image on the left is what autism really looks like. There is a saying: “when you’ve met a person with autism, you’ve met one person with autism”. In other words, no two autistic people are the same. 

In general, males are up to four times more likely to be diagnosed with autism than their female counterparts (Baron-Cohen et al., 2011). This disparity between sexes is considered to be largely due to the ability copy others to exhibit behaviours seen as socially acceptable or desirable. This ability is known as “masking” or camouflaging, and is seen more often in females, meaning that they are less likely to be picked up on by others as being autistic (Hull et al., 2019) and therefore less likely to receive a professional diagnosis. However, the discrepancy surrounding diagnostic rates between the sexes can also be attributed to the fact that screening tools for autism are considered biased toward males (Murray et al., 2016). 

When I was referred to adult psychology team in order to pursue an autism diagnosis, my mum and I often wondered whether I would meet the diagnostic criteria. After all, I had friends, I was able to communicate with others well, and had an imagination as a child. However, it wasn’t until we started the process of the assessment (which took around 18 months) that we realised I’d been masking this whole time. I have friends, but struggle to have more than one friend at a time, and my relationships are either very intense or the complete opposite. I struggle to read body language and facial expressions, and I find maintaining eye contact very difficult. When we thought about it, my so-called imagination was just copying experiences I’d had, and I always needed some form of prop to aid this kind of play (one of which is a running family joke that I had to use a blue bed sheet to pretend there was water rather than simply imagining it). This is normally the point in which well-meaning family and friends say “oh but everyone’s like that!” and I want to slam my head up against a brick wall. The difference between your “quirks” and my autism is that it interferes with my life on a daily, hour by hour, basis. It didn’t impact me drastically until I moved into halls of residence at university, where I suddenly realised that these things weren’t “normal”. I’d become upset at the tiniest changes in routine, such as always having a shower at 8pm, but sharing a bathroom sometimes meant that one of my flatmates might have been using it at that time. I struggled to make friends in lectures because I found making conversation with others hard, and as I came to learn later on from my friend Emily, I seemed hugely unapproachable to others thanks to my lack of facial expressions (I can laugh at it now, but it was so upsetting at the time). As I moved into my second year, I found that I was upsetting my new flatmates for reasons I couldn’t comprehend at the time, and I ultimately ended up in a couple of nasty disputes which unfortunately ended some close friendships. 

Living with other people bought my “odd” habits to the surface, not being able to touch certain things, always needing to use the same plates and cutlery, dissolving into tears when I heard the tiniest noise from the surrounding flats, and in the end, a culmination of these things lead to a complete breakdown. I couldn’t get the help I needed, nor could I help people to understand me, simply because I didn’t have a label for what I was experiencing. I was simply labelled as difficult (or by some, quite fairly, as a nightmare) because I couldn’t cope with the social aspect of university, which was exacerbated by my physical disability (read my other blog posts for more info). I began trying to regain control with my eating and lost 10kg over my first two years at university. Ultimately this was seen as a good thing as due to medication I’d had to take for my mental illness as a teenager, I’d piled on a lot of weight. I’d done a similar thing five years earlier, losing 4 stone through restricting my eating as a means to help me cope with things that I couldn’t change. Disordered eating is common amongst females with autism; it is still up for debate exactly why, though most researchers attribute the correlation to the aspects of rigidity which are present in both eating disorders like anorexia and autism (Kinnaird, Norton & Tchanturia, 2017). I will always struggle with food- not only does my autism mean that I will always want control over it, but also that I am considered a “picky eater” due to sensory processing problems that often come with autism. At the beginning of my second year at university, I was a plus one to someone who was invited to a fancy awards ceremony. The problems for me started before I even got there- it would involve a sit down meal that I had no idea what was on the menu. When the food arrived, I nearly cried. There was nothing through all three courses that I would eat, and I have not (and hope I will never again) experienced embarrassment like it. I was sat around a table with about 10 people I didn’t know (one who was to become my lecturer shortly thereafter), and all I ate was a bread roll. I was quite happy, it’s something I’m used to at events, but someone at the table decided to bring up the fact that I hadn’t eaten anything, despite me using my cutlery to mask the fact I wasn’t eating. Some bright spark started asking me why I wouldn’t eat it, and I tried to explain that I was a “fussy eater”, only to be met with the typical “how old are you again?!”. Slowly others at the table began to join in, telling me to “just pick off that part”. But how do you explain that the potato that’s touched the gravy or carrot is now contaminated? That I’m trying not to breathe too deeply because smelling the food would make me gag? How do you do that without sounding like you’ve lost the plot? The truth is, I don’t think you can. Because I looked like a “normal” 20 year old woman, people assumed that my struggles weren’t valid. Even after explaining that I’m autistic, people still roll their eyes and sigh, telling me to grow up when I explain that I physically cannot do that. 

Sometimes I wonder if I should be more openly autistic; perhaps then people would understand why I am the way I am. Both people with autism that I know in real life and those that I see online often engage in self-stimulatory behaviour, more commonly known as “stimming”, which Medical News Today (2018) describes as “repetitive body movements or movements of objects” and can involve a vast array of behaviours, including but not limited to, tapping, hand flapping, chewing or licking, making high pitched noises, or rocking back and forth or side to side. However, as with everything, there are more subtle stimming behaviours such as picking or pinching skin, rubbing hands together, twirling hair, humming or staring at bright lights or moving objects. And it is most of these actions, that if you look close enough, you will see me doing. As I sat down to write this, I realised I have a bruise on the back of my hand from pinching it- a stim which has become more prevalent with the stress of lockdown as I use it as a grounding technique, not that I actually realise I’m doing it until it hurts. “But Em,” I hear you cry “we all do things like that!” It’s true, we will all be guilty of whistling when we’re frustrated, pacing when we’re nervous, perhaps biting our nails, but the difference is that autistic people (the majority at least) feel we have to stim to be able to cope with our surroundings (Kapp et al., 2019). 

If we can’t stim, or are trying to avoid it, that’s when we’re on the verge of a sensory overload; referred to by some as a meltdown or shutdown. Sensory overload looks different for everyone, and can involve lashing out physically to screaming and crying (National Autistic Society, 2020). For others, it may be covering ears and trying to avoid anything touching them in any way. Again, as previously explained, these symptoms can look different in males and females, with males being more likely to display overt behaviours. For most autistic people, we need time and space in a quiet place with very little stimulation to allow us to regulate ourselves. 

So why have I been reasonably quiet about my autism diagnosis? Simply because I’m not believed. My autism looks very different to what you see on programmes like the undatables. Most of the autistic or other neurodivergent participants in the programme are very open about their “special interests”, which are very common, and involve a hyper-fixation in certain subjects (The Autism Group, 2020). My special interests aren’t maths, sci-fi or trains. I’m not a massive fan of Disney, Pokemon or anime. Instead, my special interest is namely musical theatre. Most people know I enjoy theatre, I can often be found at a theatre performance (well, when we’re not in the midst of a global pandemic that is) and listen to soundtracks more than I do other music. I also collect programmes, theatre mugs and other merchandise. Considered fairly normal, right? But then I can name the actors and their specifics from various performances of various different shows. I can tell you when they first arrived on the west end, their run times and average ticket prices. It’s very unlikely there’s a show I’ve only seen once- I will watch them multiple times, especially if I can see understudies or sit in a different place in a theatre. But this is one of the reasons that a lot of people don’t see me as autistic. Liking theatre isn’t unusual, especially amongst females. And unless you’re on my phone, living in my house, accidentally catch me off on a rant about the casting of a celebrity in a demanding role (don’t get me started), you wouldn’t know the extent of my “obsession”. 

Sometimes I feel that my autism isn’t as valid as others. I waited 22 years for someone to diagnose me. It doesn’t affect my daily life as much as it does others. But I know having autism isn’t a competition- I just wish my diagnosis was accepted by other people.

References

Baron-Cohen, S., Lombardo, M. V., Auyeung, B., Ashwin, A., Chakrabarti, B., & Knickmeyer, R. (2011). Why Are Autism Spectrum Conditions More Prevalent in Males? PLoS Biology, 9(6), 1-10. doi: 10.1371/journal.pbio.1001081

Hull, L., Lai, M., Baron-Cohen, S., Allison, C., Smith, P. L., Petrides, K. V., & Mandy, W. (2019). Gender differences in self-reported camouflaging in autistic and non-autistic adults. Autism, 24(2), 352-363. doi: 10.1177/1362361319864804

Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782-1792. doi: 10.1177/1362361319829628

Kinnaird, E., Norton, C., & Tchanturia, K. (2017). Clinicians’ views on working with anorexia nervosa and autism spectrum disorder comorbidity: a qualitative study. BMC Psychiatry, 17(292), 1-8. doi: 10.1186/s12888-017-1455-3

Medical News Today. (2018). What is stimming? Retrieved from: https://www.medicalnewstoday.com/articles/319714

Murray, A. L., Allison, C., Smith, P. L., Baron-Cohen, S., Booth, T., & Auyeung, B. (2016). Investigating diagnostic bias in autism spectrum conditions: An item response theory analysis of sex bias in the AQ-10.Autism Research, 10(5), 790-800. doi: 10.1002/aur.1724

National Autistic Society. (2020). Meltdowns- a guide for all audiences. Retrieved from: https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences

Patient Talk. (2014). How should we refer to people on the autistic spectrum? Retrieved from: https://patienttalk.org/updated-how-should-we-refer-to-people-on-the-autistic-spectrum/

The Autism Group. (2020). Behaviour- what’s so special about special interests? Retrieved from: https://www.theautismgroup.org.uk/whats-so-special-about-special-interests/

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