When I tell people that I have Asperger Syndrome, they’re initially shocked or surprised. The response is always “I wouldn’t have guessed that” or “you don’t seem like someone with Asperger’s”, but no one ever asks me what it’s like or what I struggle with. I’m going to answer a question that I sort of wish people would ask me when I tell them, because although I’m all for being talked to normally and not patronised, I think that people do need to change their behaviour slightly to accommodate the needs and well-being if talking/being around someone with ASD. It’s so easy for neurotypicals to act a bit differently around someone who’s severely autistic because the Autism is right there in front of you on the surface of that person’s mentality, but Asperger’s is not. It’s easy (but not at the same time) for us to just blend in or stay quiet and try to respect the social norms, especially if the person with Asperger’s is a more introverted person.
Of course, I’m going to be talking about my own experiences of what it’s like to have ASD, because not everyone is the same. However, a lot of people with ASD can experience similar symptoms.
So then what is it like?
Having Asperger Syndrome is a constant daily challenge, especially in environments like a school or in a supermarket. Anywhere that involves strangers for me instantly raises my anxiety levels. It’s a survival instinct to try and blend in with neurotypicals for me, something that I can rarely switch off, and it uses up a lot of energy fast.
I’m also hyper-sensitive to almost all of the 5 senses – touch, smell, sound and light.
I cannot stand it when something is loud apart from music when I’m in the mood. Sound can be very random, and if they’re particularly loud it can drive me crazy and send me into a meltdown.
Lights are more easy to manage as I wear prescription sunglasses that have a green tint so that lights are dimmed but the colours are not completely taken away, and the green is so that if I’m wearing my sunglasses, it helps me be able to still read numbers instead of having to use my yellow overlays all the time (this is due to Dyscalculia).
Smell is also a little easier to manage because if it’s a nice smell, that’s great, and if it’s a bad smell, the majority of the time I can get out the environment. For example, when I wash up I can’t wash up the wok because it smells awful and makes me feel sick, so I trade that chore for something else that I can manage.
And finally touch. Pretty much all kinds of touching hurts for me; a brush on the arm walking past someone in a corridor, a poke, a hair ruffle. It just hurts my skin and my bones if it’s a rougher kind of touch like a pat on the back or something. Most kinds of touches are always very unexpected too, so it can make me tense up and feel awkward and uneasy. Unless it’s something like a high five or a hug from someone I’m familiar and comfortable with and know it’s coming (and even then it can make me feel awkward), then I will always hate touching.
Social interaction is also very difficult because of not knowing what to say half the time and not getting jokes. According to my mum, my mental age is probably about 14, but I feel like it’s either like I’m a child aged 10 or under, or 30+, depending on my mood and behaviour that day. I’m also very behind in conversations. Conversations move very quickly, and by the time I’ve formed a response in my head and thought about how to word it, the conversation has moved on to something else, which can be distressing for me because I still have the thought in my head that I wanted to share. Dealing with conversations can be tricky, because I either have to get what I want to say out quickly, resulting in me not saying it right and people misinterpreting what I’ve said, or thinking about what I want to say for too long and missing my chance to say it at all.
I’m also extremely bad at saying the words “no” and “stop”. For me, if I do something and someone says those words to me, I try to not do whatever I was doing around them, because it obviously upsets them or annoys them, just like I get upset or annoyed at particular things people do, so it should be reciprocated. If someone asks me if I want to go out and I say no I don’t want to, or if it’s planning a few weeks in advance and I explain that it depends how I feel on the day, then people should just accept that fact and stop asking. The same goes for if I tell someone to stop doing something, they should just stop with minimal questions asking why they should stop. It also doesn’t matter how I say to stop or if I say no, because sometimes if I’m talking to someone face to face and I sort of seem to jokingly ask them to stop doing something, I’m still asking. If I seem like I’m joking, it’s just because I feel awkward asking in the first place because I don’t like conflict and I don’t like making a big deal out of things.
I also feel like my emotions are heightened and very unpredictable. If I stick with my routine, I’m usually okay, but if something unpredictable happens, I won’t know how to act and it can send me into a meltdown or shutdown. The only ways to really get out of these to let my anger out by talking about it to my mum (which usually ends up with me shouting what I’m thinking), or doing my special interest which is watching whatever TV show or film that I’m obsessed with at the time (I usually watch Bridget Jones’s Diary or Baby Mama when I’m upset).
Many people also believe that people with ASD don’t have empathy. I do not know if this is true. For me, I can understand why people might feel the way they feel if we’re either in a similar if not the same situation, or if it’s been explained to me that a particular something is going on in say their private life. I tend to not display my emotions (especially in public) simply because I just can’t handle them. I will either stay neutral, try to fit in with the emotional feel in the room which can make me very tense if someone is angry or sad, or just make it known that emotions are a strange thing to me. Again, I can understand why someone may feel an emotion, but if someone is feeling something because someone or something as made them feel that way and I haven’t completely experienced that for myself, it can be a little confusing to get my head around. I may have to elaborate on the whole emotions thing another time because I feel like I’m being quite repetitive because I don’t fully know how to explain myself yet.
I think I’ve got all the main points of what it’s like to have Asperger’s summed up for people who don’t know. Of course there are other things that come into having Asperger’s too like obsessions, special interests and quirks, but they’re all related to the individual. Obsessions can literally take over someone’s life who has ASD and many of us base our lives around our obsessions and special interests. The majority of people with ASD go into careers where their special interest and the intensity that they can focus on that subject is valued, such as becoming a scientist, mathematician or writer.