I want to discuss what Asperger’s (one part of the Autism spectrum) looks like for me.
Female Asperger’s looks quite different to male Asperger’s. We are different, our brains are wired differently, and there are genuine biological and hormonal differences. That does not mean to say there are no similarities or overlap. For example, I love camping and fishing (stereotypically male activities) and hate fashion and makeup (stereotypical female interests). I love physics and maths (stereotypically male subjects at school) but don’t understand art at all (stereotypically female subject at school).
Over the years since Asperger’s Syndrome and Autism were defined, males are diagnosed for more frequently than females. People assumed that it’s a “boy condition”, and “girls can’t have Autism”, but that is nonsense. The reason is that girls present differently. Not only that but there are males who present differently who have also been missed.
The problem is Masking
Masking is the ability to watch others and copy their social interactions in order to fit in.
Masking means fitting in with who you are with at the time. Some people describe it as acting, but as someone who can’t act to save herself (literally, during a Krav Maga training session the instructor told me to scream “Don’t take my purse!”, and I couldn’t do it, I just giggled with embarrassment), I see masking as behaving in the necessary way to not be socially ostracised for that situation.
People assume I am good with people. I am not. I have worked very hard to learn how to have successful interactions one-on-one or in very small groups, but it often starts to fall apart in crowded settings where I want to hide in the darkest furthest corner and disappear. I always sat in the back row of lecture theatres, towards the closest seat to the corner that was darkest. At parties I always find a corner with the least people crowding around.
I always wanted to be an Astrophysicist, so I could sit in a telescope dome in the dark away from humans, but what happened along the way? I needed money to live. So, I became a waitress, a receptionist, a teacher. It takes a lot of work. It does not come naturally. The skills other teachers take for granted when managing a classroom, I have to put a lot of effort into. These are skills that can be learnt, but they don’t come naturally and I don’t find them easy.
Many people assume that if you look like you can interact normally then you can’t be autistic or have Asperger’s because you don’t look like Rain Man, or Sheldon. But girls watch and learn how to behave to avoid being bullied at school (I didn’t get the hang of that skill until high school when a change of schools gave me a chance to start from scratch, and even then I was still awkward). We copy older siblings or people we admire for how to dress, how to talk, what TV shows are good to watch. We have misconceptions about social rules and frequently say something that causes a room to go silent with awkwardness. Or we leave a conversation, playing it over non-stop on the way home and kick ourselves for saying a particular comment, and truly believing that the other person will now hate us and never want to see us ever again. Oh, the panic! We are often left wondering if the real reason that we haven’t heard from that friend is because we said something wrong the last time we hung out and are clueless as to why we no longer get invited to parties (not that I like parties, but it seems that you have to go to them if you want keep friendships).
Friendships are hard work
Autistic people DO want to have friendships, some of us have even learnt the social interactions to start a new friendship and are really good at the initial phase, but then keeping friends is so much harder because eventually our awkwardness comes through and for me, friendships often fade away even though I try really hard to “catch up” and all the rest that is meant to go with it.
My psychologist who diagnosed me asked me “what makes a good friendship”, and after a few moments of panicked thinking to come up with a dictionary type definition, she said to me “you probably have a checklist in your head of things that friends do together but can’t actually define what friendship is”. Yes! That is exactly what is in my head, a list of things like chat over a cuppa, invite each other to parties, share details about what is happening in our lives etc, but I can’t describe, with words, the emotional connection of friends at all.
I do have friends, and I am so grateful for those friends not turning away from my personality in disgust as I watched many people do to me during my school years (children and teenagers don’t hide their hatred, disgust and contempt for others at all). Since having children, it is so hard to catch up as often as we used to, it is often more than a year (or several) between catch ups, and as a result I am frequently left wondering if life will cause all the friendships I do have to fade away with the busyness of life.
Another very common problem for autistic people is that we get sensory overload. I always thought it was normal for your eyes to sting and water in pain when you go into sunlight. I thought it was normal to hear every clock, computer fan, car going past, fly buzzing, breath taken, hair and clothes rustle with every slight movement, all at once in full volume in a giant cacophony of noise. “Silence” is so deafening with noise to me that I need music playing to drown out the sound of my own blood pumping past my ear drums (I thought everyone could hear that). I used to be a waitress and restaurants are the worst for background noise and not being able to hear what is being said (I would always repeat the order back to avoid errors).
Buying shoes is the worst! Every pair of shoes I would try on is excruciatingly painful. I finally have a pair that I like, they’re super soft and supportive, made for people with diabetes. Most clothes are painful, they dig in, waist bands cause cramps. Even tying my hair in a ponytail gives me headaches. Again, I thought everyone felt these things and that I just needed to learn to “get over” the pain because everyone else can wear a pair of jeans without complaining.
The effect of all these issues is burnout. Yes, Autistic people CAN learn to mask and appear “normal” or seem socially competent. Yes, Autistic people DO have friends. Yes, Autistic people CAN work or socialise in bright, noisy settings, wearing jeans or fashionable shoes that hurt. The question is: “At what cost?” or “How long can they keep it up?”
I have a bad habit of starting a task, such as a jigsaw, and I will sit and work on it for hours forgetting to eat, I’ll put off bathroom breaks and just hold it, I will not go to bed until my eyes have been stinging for at least an hour. I will do that jigsaw until it is finished, or I literally need to collapse in bed.
This is what burnout is like but on a much larger scale. For me, I work hard and put every bit of effort in to socialise, study, work etc. I will fill up my days and weeks with activities. Then I collapse in a heap. I spend days or weeks in bed or on the couch trying to recover my strength. I feel like I have lead weights in my shoes walking the 200m to collect my children from school. I keep my distance from the other school mums because talking uses too much energy. Going to the shops just to buy milk and bread is so impossible that Hubby has to go on his way home from work. Every blood test the doctor runs comes back normal for minerals and vitamins and everything else.
Eventually my strength starts to slowly return and life goes on. At some point months down the track I feel like I can take on more commitments again and the cycle repeats.
The more I mask, the harder I burn out. The more I socialise, the longer I take to recover my energy during the days that follow. The more my senses come under assault, the weaker I feel for days.
For me, Autism isn’t about whether I look or don’t look “normal”, it’s about the amount of energy required to function everyday.
If this resonates with you, there are online generic Autism Quotient tests such as this one at psychology-tools.com. Specifically, for females with Asperger’s, the list produced by Samantha Craft at Everyday Aspie is brilliant and is often used to assist a diagnosis. I formatted the list with space to annotate it with notes of how I met each point and took that with me to help me remember everything in my appointment. Below the list is available for download as a PDF in both A4 and US Letter size.