As a female with Asperger’s/high functioning autism this is the thing I dread hearing most after disclosing to somebody that I have Asperger’s. I can’t speak for males with the same diagnosis, but I know it is something us Asperger females are frequently greeted with, and shockingly I’ve actually heard this comment from medical professionals (though thankfully only from specialists who aren’t linked to the area).
There are four main reasons why hearing this or anything similar bothers me and plays on my mind repeatedly.
1. You’re completely taking away my social identity in one small sentence.
I realised from a very early age that I didn’t fit in with the other, neurotypical, kids. Whilst many were nice and I had a few good friendships with a couple of the kids in my school, I didn’t fit in with them overall. I hated pretend play and preferred to organise, I didn’t like having anybody near me so any type of contact play or sports were out of the question and I was frequently told that my social behaviour was abnormal. With increasing age I accepted the realisation that I didn’t fit in with most people.
Now I have come to understand that as an adult with Asperger’s I have a very different culture to neurotypical people. I became completely accepting of this when I was diagnosed, when I begun to research in to Asperger’s and found that I’m not alone; and that there is not only an explanation for why I never truly fitted in, but that there are people in the exact same situation as me, with ‘norms’ closer to my own than to the general norms of society. Being diagnosed late, however, meant that it took a lot of adjusting before I felt I belonged as an Asperger’s individual. Every time somebody questions the extent of my Asperger’s I feel like they’re telling me I don’t fit in with that category of people either, that I basically just don’t fit anywhere. So many times I have gone home upset, exclaiming that the diagnosis must have been wrong, that I mustn’t have Asperger’s and just don’t fit in anywhere. Ironically this usually leads to a meltdown, all because of a comment somebody made in response to my diagnosis being revealed to them.
2. Autism/Asperger traits are not always visible.
Everybody has good and bad days, everybody can put on a strong persona some days and not on others. From talking to people both with and without autism the difference appears to be in the things that bother us.
The only example I have is myself, on a good day (minimal change in routine/no sudden events etc.) I can leave the house and fake eye contact pretty well (my technique is to look at a less intimidating facial feature), I can manage some convincing social discussions and walk around free of any degree of meltdown. On a bad day if I have a choice I won’t leave the house, I don’t like the reactions I get when I’m having meltdowns or in clear distress, but sometimes staying home isn’t an option (whether it’s work/university/appointments – I don’t like to cancel). On the bad days when I have to leave the house, it becomes quite apparent that I have Asperger’s. I end up jumping and sometimes shouting at every sudden noise, I am completely unable to make eye contact to the point where I look only at the floor, I avoid conversation and human contact at all costs and on particularly bad days end up having public meltdowns.
Just because a person isn’t seeing autistic traits in me one day doesn’t mean they never will, the longer they know me the more likely they’ll end up seeing my traits. The problem is that once somebody decides I’m ‘not that autistic’ when they later see said traits in full they immediately assume my behaviour is rudeness or erratic behaviour rather than a product of my condition, which they’ve decided I don’t have.
3. It takes a lot to keep autistic/Asperger traits aside for social interactions.
It’s unfortunately not as simple as I mentioned prior, with everyday fitting ‘good’ or ‘bad’ as much as I’d like that to be the case. Almost every day that I leave home or interact with somebody outside of my close network, it later leads to some sort of heightened trait expression. A lot more things bother me than seem to bother neurotypical people, things like a buzzing light on the bus, having to sit next to another person on public transport, having to remember to fake eye contact/show emotion on my face/respond appropriately in social conversations, dealing with the feel of rain or wind on my skin, and that’s just to name a few. Therefore, most days are taxing and this takes its toll, sometimes I’ll be visibly agitated in public, but more often than not (due to years of practice) I hold in every single thing I’ve had to deal with until I get home. The problem then is that once I get home I will feel exhausted, sometimes be unable to function cognitively, definitely be unable to handle any more human interaction, feel pain at the slightest touch, and often after a day of these factors building up I get home to have a meltdown.
The reason I learnt to hold in until I get home is because mimicking neurotypical traits and social interaction makes parts of life easier, it means that I can somewhat break social communication barriers between me and other people to get by. However, it doesn’t mean I’m cured, it is simply me putting on a role to try and get by in the ‘social world’ and the traits I’m mimicking won’t one day become natural to me. It makes it even more insulting when somebody then puts your diagnosis in to questioning. It feels as though they’re failing to see how much effort you have to put in on a daily basis, and I always feel as though their opinion would change if they saw the after effects of a day outside of home.
I distinctly recall when I told one of my closest friends about my diagnosis. For some reason the topic had never came up and she’d found out when it casually popped up in a conversation. After a delayed silence she replied with ‘I didn’t notice’ and I felt the usual dread of anticipation as I waited for her to inform me I wasn’t that bad or my diagnosis was wrong. But she didn’t, she responded by telling me I must have learnt to cope extremely well to be able to keep my traits from showing and to engage in social interaction. I remember thinking why can’t it always be this simple, why can’t everybody instantly recognise that I’m having to cope with multiple factors rather than instantly wanting to undo my diagnosis.
4. You’re stereotyping me.
Autism is a complex condition, it’s referred to as a spectrum because it presents differently in everybody. We are still individuals with personality traits amongst our condition. Please don’t assume that you know everything about autism because you have met one individual on the spectrum, our traits and trait expression can vary so widely. Even more importantly, don’t assume you know what it’s like to have autism because you have seen a very bad fictional depiction of it via the media.
Putting aside individual differences there are more obvious differences to point out. Firstly, there are different types of autism, traits linked to ‘classic autism’ tend to differ quite a lot from those linked to Aspeger’s and HFA. Even more refined (focusing here on Asperger’s/HFA) there is a big difference in traits between males and females.
For a long time people didn’t recognise autism as a female condition, at present we are still less common than males with autism/Asperger’s. We are under-diagnosed, misunderstood and for those of us who do get a diagnosis it’s often much later in life. Therefore, understand that autistic traits you may have heard of frequently have been coined from populations where autistic females are largely underrepresented. It is increasingly gaining understanding that us females, from a very young age, learn to mimic. We tend to start out by mimicking entire behaviours regardless of context, sometimes even the accent/mannerisms/style of a person, and as we get older we learn to extract the smaller behaviours and the contextual rules that come with them. But again, just because we have became experts at mimicking, the behaviours we show won’t be natural to us, it does not mean our autism is gone or lesser than it was.
I therefore wish people would keep a few things in mind: the person you meet with autism is probably not going to meet the preconception you hold, people with different forms of autism will express their traits in completely different ways, autism (especially high functioning) can be hard to detect in females and lastly you are (assumingly) not a Psychiatrist, please consider your words and their impact before you minimalise or take away someone’s diagnosis.