Female Asperger’s

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.

Why?

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.

Sensory issues

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.

Burnout!

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.

What is Autism/Asperger’s?

For years I had heard this word thrown around, but I never really understood what it meant.  I knew it was a “syndrome”, so that means that there are genuine struggles that those people faced, but other than that I couldn’t honestly have said what those struggles were.

I also knew that Asperger’s was a “type” of Autism, which is now considered a whole spectrum of presentations rather than a single list of symptoms to be ticked.  My only association with Autism came from watching a current affairs type segment on TV many years ago about a boy who never smiled and couldn’t demonstrate emotions like love.  I had also heard that Sheldon on Big Bang Theory had Asperger’s even though the show never claimed that to be true (I could relate to almost everything about Sheldon, I should have picked up on that).

At university, while studying for my Graduate Diploma of Education to be a high school physics teacher, we were taught to be inclusive of special needs and we were taught different types of learning and how people with autism are often visual learners so use pictures in your teaching, and children with Autism need routine, so always make sure students know what to expect each day etc.

But still I didn’t really know what Autism and Asperger’s were. 

So, I researched.  Of course, not knowing anything I started by typing “what is Asperger’s” and “what is Autism” into google, and I was instantly inundated with “symptoms” and “early signs of”.  The two lists are completely different, Autism lists consist of things like “non-verbal”, “learning disability”, “low functioning”, “no eye contact”, while the Asperger’s lists say “high functioning”, “high intelligence”, “resists change”, “obsessive interest” etc.  At first glance the lists seem completely different but there is actually a lot of overlap and features that can apply to anyone Autistic or otherwise.  What it really shows is that Autism occurs in people of both high and low intelligence (and everywhere in between).  Autism occurs in people who have delayed speech or are non-verbal as well as people who were precocious speakers as children.  Autism occurs in people who need assistance for day to day living all the way through to people who are independent, in relationships, and/or have careers.

Autism is about a difference in how your brain works.  It’s about differences in perception of senses.  It’s about being really good at some things and terrible at other things, but not the ones that society thinks are “normal”, for example I’m really good at things that involve spacial awareness (maps and jigsaws) but I’m absolutely terrible at knowing what emotion I am feeling. 

Diagnostically, clinicians focus on all the things that Autistic people are NOT good at, “social deficiencies”, “poor executive functioning” (ability to organise and cope with day to day living), “repetitive and restrictive behaviours”, “obsessive interests” and co-morbid conditions like depression and anxiety.  But I truly believe it ought to be reframed in terms of the things we ARE good at.  The ability to hyperfocus on an area of interest, the ability to notice patterns or details that others can’t, the tendency to be honest, loyal and not play mind games.

Yes, we struggle with certain things, yes, many Autistics do need significant assistance, but we also have a lot to offer the world.  Autistics think out of the box, we see the world from a different perspective and come up with new ideas.  And who else is going to teach the neighbours at parties how to find south by looking at the Southern Cross at night?

Diagnosis

I have been on this journey of discovering my true self for just over a year now. I have always felt like a misfit, but I always learnt what I needed to do to appear “normal”.  Ever since I was young I would watch and try to copy people who seemed to have it together.

It all began in January 2018, when my father-in-law told Hubby that my son, Master W (7), may have Asperger’s as he shared the same traits as the children of one of his friends, 2 of whom are diagnosed Asperger’s, and one Autistic.  After being initially quite offended at the suggestion that there was something wrong with my son and that he needed fixing (that was how I interpreted the suggestion), I did the logical thing to research what Asperger’s actually was.  I knew a tiny bit from studying my Graduate Diploma of Education (Secondary), but in hindsight I really knew about as much as a child learning to count knows of advanced calculus.

Being as thorough as I am, I lived and breathed Asperger’s and Autism articles and books for the next several weeks. But within a day or two I had realised that yes, he really is an aspie (because saying “Aspergic” just sounds really weird).  But then, as I was completing a “does your child have Autism?” quiz on the internet I suddenly realised that everything I was ticking for Master W also applies to me. Everything quirky about him, he gets from me.  So, I re-did the quiz with me in mind and I scored 38 (out of 50, anything over 20 is plausible ASD, and 32 is the average score for autistics). 

My initial thought was “I bet it’s one of those internet quizzes that everyone scores high on, like all those Facebook IQ tests”.  So, then I got Hubby to do the quiz and he scored 20, and I thought “hmmm!”  So, I got my Mum to do the quiz and she scored 19, then I really thought “HMMMM!!! Maybe it’s not just a “Facebook IQ test where everyone scores over 150” thing”.  I searched the internet day and night (in between being Mum and preparing for a brand-new career as a teacher) for references to autism in adult females. 

I knew that getting a diagnosis for Master W was the right thing to do as he was struggling with his school work and the extra support was definitely warranted.  The question was “as an adult in a happy marriage, with children, a career, etc, what good would a diagnosis do?”  Ultimately, I read a quote from someone who said she got herself diagnosed so she could say to her son “It’s ok. Mummy has it too.”

This one line resonated so strongly with me that I made up my mind that the day after Master W’s diagnosis was confirmed by all 3 required professionals, paediatric psychiatrist, psychologist and speech therapist, in March 2018, I phoned a psychology clinic and arranged for my own appointment to get booked in.

Then during the April school holidays, I received a phone call saying there had been a cancellation and asking if I was available “tomorrow”.  5 hours of appointments analysing my childhood and personality later I had a psychologist confirmation in May 2018. Then I booked myself in to a psychiatrist, and 2 hours later, in July 2018, I had the second confirmation (as is required by the Western Australian guidelines) that yes, even though I “look” perfectly normal, I am in fact on the Autism Spectrum and I am just really good at masking what is going on in my head and how I am feeling deep down.

It took me a month before making it “Facebook official” by announcing it on Facebook to all my friends and acquaintances.  I just needed a few weeks to get my head around this profound shift in my thinking.  My decision to wear this label like a badge of honour is all to break the stigma surrounding the word “Autism” and show my son that it is nothing to be ashamed of and to change how society views autistics.

About Me

Thanks for joining me!

My name is Katherine.  For the sake of my children’s privacy I won’t be using their names, until a later date when they consent to the being linked to what I write (though I intend it to remain positive and not include things they would resent me later in life for making public).

My husband and I have been married 10 years (got married in 2008).  That’s a long story for another post.  Our son, Master W, is 8 (born 2010) and our daughter, Miss J, is 5 (born 2013).

I completed a Bachelor of Science (Physics) 10 or so years ago, majoring in Astronomy and Astrophysics.  I am a Christian with a love for learning the context that the Bible was written in, lived in Israel and started learning Hebrew.  I love music.  I never had lessons as a child, so I sing, and I have been trying to teach myself guitar, bass and saxophone.  I also love jigsaws, craft and I taught myself to crochet to make amigurumi.

I am writing this blog to document my journey discovering that my son and I both have Asperger’s, and subsequent official diagnosis of Autism Spectrum Disorder (according to the DSM-5).