Beginning Homeschooling

The last few months have been amazing, awesome, filled with hope for a better future, … and hard.

So much change has happened recently.  Change is difficult and leads to exhaustion even to the point of burnout, but it is good change.

I withdrew my son from the local public school as his needs were not being met, academically or socially.  I have wanted to homeschool for many years.  I felt in my heart that it was right decision to make.  So, as of May, I am now a Homeschool Mum. His little sister is still in school for the time being, but that will likely change later down the track.

I am confident in this change in lifestyle, I am after all a registered teacher.  However, there are so many logistical and planning things.  But my first priority has been to remove the anxiety caused by the pressure the “system” puts on students.  The concept of unschooling definitely has merit at this point, considering my concerns for mental health of students.  How our journey will develop, I don’t know yet.  It’s a journey, and I am learning that it’s ok to take an alternate route.

The current education system works for students who are “middle of the road”, not extremely gifted but not struggling either (some schools cater specifically to these groups but mainstreams schools are limited in their capacity to offer the differentiated learning required by these students).  It is a system designed for preparing hardworking, academically minded students for ticking the boxes to get into university.  Many schools now also cater for hardworking students aiming for a TAFE qualification.

Throw autism into the mix and the system frequently fails the individual.  If a child is seen as “low-functioning autistic” (often referred to as “very autistic” or “severely autistic”) they are left to flounder under the guise of “special needs”, “Oh, he’s autistic. It will be a miracle if he manages to even get a menial job as an adult.”  Or the child will be seen as “high-functioning autistic” (often considered as “not that autistic”) and will be expected to cope without appropriate supports or adjustments, “He just needs to learn to fit in and conform like everyone else.” (*Please note: these functioning labels are not helpful and often prevent the autistic individual accessing the supports they need due to stereotyping)

I conformed as a child.  I can’t remember learning to do so, but I learnt my lessons well because I was too scared not to, I still am to a large extent (that’s a work in progress).  A typical autistic trait is honesty, and the flipside is that you tend to be very trusting (to the point of gullible at times).  I used to believe that to fit into society you must go to school, then university, then you will do well in life.  If you don’t go to university then you won’t do well in life.  That’s not quite how life has turned out for me, or for many people I know.  I used to believe in “the system”, because I was drilled with the thought that I must follow this path of education in order to succeed, from a very young age.  It wasn’t until I worked in that system as a teacher, and as a newly diagnosed autistic, that suddenly my eyes opened to the flaws of just how badly our children (autistic and non-autistic alike) are being let down by a society that doesn’t want it’s population to have critical thinking and 21st century competencies.  Society is teaching its children to be obedient and follow social expectations.  Children are not given the freedom to learn what they want to learn about (there are so many examples of autistics who thrived from interest-led learning), they are told what they have to learn, and when, and too bad if they missed a foundation skill because the system does not allow teachers the freedom to teach students what they need to know, only what is mandated in the curriculum for their age, which is too full that the teacher never has time to teach anything else, even if it’s what the children need.

I observed an education system that has the goal of conformity, which is the same goal as ABA (a very controversial therapy as the goal is to supress the autistic traits and make the person appear “non-autistic”.  Many autistic adults who have undergone this therapy as children strongly campaign against it as it is psycologically abusive).  Students are required to conform. Conform to the rules, conform to behavioural norms, students are not allowed to question the morality or justice of those rules, merely obey because they were told to.  Yes, obeying rules prevents anarchy, but when the population doesn’t have a voice to ask whether those rules are just and fair, there is a problem (some schools do give students a voice on some issues I am very pleased to say, however the biggest issues are at the curriculum level and students as under-18 non-voters, will never have a say on those).  Is standardised testing a true measure of a child’s worth and/or potential?  Are the negative mental health impacts worth it?

The system does work for some, but definitely not all.

I recall a conversation I had with my pastor when I first enrolled in the Graduate Diploma of Education course to become a teacher.  She asked me why I was doing it if I wasn’t sure I wanted to be a teacher, especially as my whole life I swore I wouldn’t ever do that for a living after watching my Mum work as a primary teacher her whole life and I didn’t like the thought of it.  My response was that I didn’t know why, but I had prayed and I knew deep down that it was the right thing to do, even if for no other reason than giving me the confidence to homeschool “and if I only work for one year then that will be a bonus”.  Well, that’s exactly what happened. I worked for one year as a high school Physics teacher, I resigned, and now I am homeschooling my boy.  Not only that, on his very first day of homeschooling, I received a call inviting me to begin work as a relief teacher at a very lovely school, which I can only manage thanks to a very supportive Mum who offered to help with the homeschooling one day a week.  What an answer to prayer!

My son and I are embarking on a new journey, away from the system of conformity.  I intend to take the good parts from my teaching experience, the lessons I have learnt from my life journey, and I intend to continue growing as an educator, and hopefully I can have a positive impact on my family, those around me, and on society’s views on autism and education.

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.

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).