How do I Stim?

Stimming. 

This is the name given to the repetitive actions that self-regulate emotions and help to calm the person when there is too much sensory input from the environment (light, noise, smell, social demands etc).  Stereotypical stims for people with Autism include hand flapping, banging head, spinning, bouncing, echolalia (I’ll do a whole blog post on this later) etc. 

As someone who has suppressed myself from behaving “inappropriately” for most my life, I can say that I never dreamed that I had “Autistic stims”.  I did, I always have done, but in true masking style they were very subtle and even I didn’t know I did them until I tried to not do them.

Being a physics teacher at the time of my diagnosis, I couldn’t just flap my hands or spin in the classroom. In fact, my whole life I’ve suppressed the urge to move because that’s not “appropriate behaviour”. My whole life I have been tense and on edge around people, even family. I would be sitting rigidly and waste copious amounts of energy focusing on my body and facial expressions. I have always been self-conscious with terrible self-esteem and I could never work out what to do with my hands or my face.

Pushing my hair behind my ear. 

I never noticed how much I touch my face or brush my hair behind my ear until I had to not do it in the classroom.  It was only after I had to think about and control my hands that it dawned on my just how many times a day my hands would automatically adjust my hair, or touch my chin, jaw bone or ear lobe.  Once I noticed it I realised that I do it several times a minute when I am in social settings.  I think it is part of not knowing what to do with my hands so rather than holding my hand awkwardly, I adjust my hair, or my sun glasses on my head, just for something to do with them.

Toe flicking. 

I have always had a habit of flicking the second toe on my right foot.  It’s always hidden but sometimes when there is a quiet lull in a conversation, the person I am near will start looking for the source of a tapping noise, and it turns out it was my toe flicking, causing the wooden floor to amplify the sound.  During my first few months of teaching, I was so stressed that I pulled a muscle in my foot by flicking my toe too much.

Sipping tea. 

Anyone who knows me, knows that I am a tea-o-holic.  Strong English Breakfast, with lots of milk (lactose free these days).  I almost never go anywhere without my travel mug, whether it’s work, church, appointments, tee-ball games.  I always have a cup of tea.  I assumed it was the caffeine I needed, but towards the end of the year of teaching, a decision was made that the teachers were no longer allowed to have travel mugs in the classrooms.  This actually caused me to seriously panic.  It was not for the nourishment or caffeine (I could still consume the same volume of tea if I planned ahead), but for the comfort of having something to pick up, hold, and sip for sake of sipping.  For me, nursing a cup of tea, sipping it over an hour, is calming.  When I am in a crowded place I am tense and sipping my tea helps to relieve the anxiety while I am trying to find the least crowded spot to stand.  Sipping my tea in the classroom (travel mug with lid for safety) helped keep me grounded and calm.  Having something to hold and sip reduces social anxiety.

Running my finger along an object. 

On my keyring I have a mini TARDIS.  While I would be teaching I would either be running my thumb along the edge of the whiteboard marker lid, or running it along the edges of my TARDIS keyring in my pocket.  I did this constantly, consciously and sub-consciously, almost as though giving my brain something else to focus on helped me to not become overwhelmed with the noise and complex social interactions of a classroom. 

Harmful Stims

Unfortunately, some stims are not benign.  Over the years I have had stims that did cause pain.  That’s a topic for another blog post.  I do want to say that it is important for anyone who does have a harmful stim, that they replace it with a harmless one.  This could happen quickly or take years of determination to achieve, but it is possible.

Everyone has habits, everyone has little things they do that help soothes them.  For an Autistic person, those habits are essential to regulate their emotions and to prevent them becoming completely overwhelmed.  For an Autistic person, removing stims, without replacing them causes extreme distress, which I discovered the hard way when I couldn’t flick my toe due to a pulled muscle, not being able to have my comfort tea, and trying to find something to do with my hands other than brushing my hair behind my ear (thank goodness I had my TARDIS).  My awesome hubby bought me a fidget toy that I kept in my pocket and somehow, I managed to survive to the end of the year, smiling.

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.

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).