Dear Pauline Hanson: Autistic children are not the flaw in our education system.

Dear Pauline Hanson,

When I first heard you proposed that autistic (and other disabled) children be removed from mainstream classes, I was angry. You asked Australia to go back and review exactly what you said in context. So I did.

I’m no longer angry. I’m frustrated and disappointed.

You argue that teachers are too preoccupied with children who have special needs to adequately attend to the rest of their class–and you are correct. You are absolutely correct.

But this preoccupation isn’t due to children with autism or disabilities being present. And children with different abilities are not placed in “mainstream” classes to make them “feel included” or “less hurt”.

Allow me to explain.

1. ALL children in the classroom have special needs.

   All of them. No exceptions. The way that we teach children is fundamentally flawed, it accounts for only the tiniest percentage of people who learn effectively in a traditional classroom environment.

   This environment is only just beginning to acknowledge students who learn best by methods outside of lecture and repetition. It is only just beginning to recognise that there are intelligences outside of being able to recite times tables.

   In a classroom the variation of ability is not as simple as disabled and non-disabled. No two kids are at exactly the same level in every aspect of their education, and teachers are charged with understanding each individual child to help develop their weaknesses and provide pathways to excel in their strengths.

   Teaching to a range of learner types, at very different stages of learning, is an enormous challenge. Especially in the primary system where one teacher is responsible for the general education of an entire class.

   Our system doesn’t allow for the attention that every child should get. It just doesn’t. Teachers are pretty marvellous beings, but even so, a single teacher can only be in so many places at once. The issue isn’t too many children with special needs, it’s too many children competing for the attention of one. It’s a classroom system that doesn’t cater for the different ways in which children learn.

2. Autism is not always a negative in the classroom.

   Children with autism are often especially gifted in a particular area, “leaps and bounds” ahead of the others as you put it. They aren’t holding anyone back. Teachers could–and should!–encourage autistic (or any) children with a particular gift to work with their classmates who may be struggling in that area.

   Why? Learning to help others is a lesson in patience. It’s a lesson in truly understanding what you’re teaching. It’s a lesson in cooperation. It’s a lesson in communicating. Learning to work with others is knowledge you can’t just get off Google–and this is what we need to be preparing our kids for more and more. Information is great, but social and communication skills are far more important.

3. Mixed-ability classrooms develop social skills and tolerance in all.

   School isn’t about learning facts anymore. It’s learning how to exist in the world, and how to be a good person. When you rob a classroom of its diversity, you create a false world where differences are abnormal. Children are then not socialised with those outside of what they know, and rather than viewing each other as peers they see aliens. People they don’t feel they can understand.

   The best way to teach children how diverse and wonderful humans can be is to have that representation in the classroom.

   For children with aspects of autism, socialising may not come naturally. Having examples of their peers on which to model and test their behaviour is one of the most effective interventions you can get. I act as “normally” as I do almost entirely due to my observation of others my age—an opportunity I would not have had if I were segregated out of a mainstream class.

4. Autistic children are not all the same.

   Not even close. If you imagine the range of life and academic skills as a bar graph, the level of the bars for an average person doesn’t vary very much from skill to skill. They have strengths and weaknesses, but overall it’s pretty level.

   In a person diagnosed with autism, these bars are all over the place. Language abilities may be a huge tower, but mathematical skills is almost 0. Psychologists call it a ‘spiky profile’ of abilities. Autism is an intense variation in strengths and weaknesses. My social skills (very low in early childhood) might render me “disabled” but my language abilities (very high) say the opposite. What would happen to children like me in a special school? Would my gifts be forgotten in a room designed to rectify weaknesses?

   You can’t solve the issue of teacher attention by taking out all the kids who are classed “autistic”. You actually make it worse. What you have there is that same mix of different abilities as you find in a regular classroom… on steroids. A single teacher, however superhuman, will not be able to provide that group with the learning support they need.

5. A child needing intensive teacher support should not be relying on the main classroom teacher for it.

   What you seem to be referring to are children who are so challenged by their autistic traits that they require extensive teacher support. That does indeed drain the teacher’s time.

   These children should have aides. Someone dedicated to providing the learning support they require so that it doesn’t impact the teacher’s ability to teach the rest of the class.

In short, segregating a subset of children from classrooms will not work. You simply recreate the same issue in two different classrooms. A teacher with no “disabled” children still needs to cater for an incredible range of intelligences and learning types. It robs children of their ability to learn from each other, actively and passively. It robs them of the chance to understand someone different to who they are.

The system is the fault, not the children in it. A system that expects teachers to effectively manage and balance their time between so many variables. A system that requires schools and parents to jump through fiery rings of paperwork just to provide one child with the support they need. A system that devalues the complex work our teachers do, while asking more and more of them every day.

Our schools need help. Our teachers need help. If we truly want to create an education system we’re proud of, we need to invest in it. Get aides beside those children who need them. Let our children learn from each other. Bring down classroom sizes and let our teachers bring out the best in all of their students. Let them teach rather than tying their hands with paperwork and ineffective testing standards.

This isn’t about avoiding the “hurt feelings” of children with autism. This is about ensuring that all our kids get a well-rounded education.

And we need to all be in it. Together.

What anxiety feels like (for me), and how I survive it.

This is one of those posts that can only ever be accurate to my experience. There’s no ‘right’ or ‘wrong’ way to experience anxiety, just a combination of symptoms that affect particular people. I find my experiences of anxiety fit into some smaller sub-types that I’ve defined for myself, and by defining those types, I’m better able to treat myself when I need to.

Anxiety is often mis-understood as a psychological illness with purely psychological effects. This is very rarely the case. Anxiety starts in the brain, but the physical effects that result can be debilitating.

So here goes. My anxiety and panic sub-types, as defined by me.

PANIC DISORDER

For some, the terms ‘panic’ and ‘anxiety’ are interchangeable. I don’t feel they are, but those are just the words I use to label how I feel. I have been formally diagnosed with panic disorder, and to be honest, these days–it’s the easiest of all to manage.

Panic disorder, for me, is the sudden, crippling, struck-by-lightning, acid-down-your-back, stomach-through-your-toes, overwhelming sense of sheer terror that grips me out of the blue.

The weird thing about it, is usually I don’t realise I’m anxious prior to the attack occurring. I’ll be fine one moment, and then bang–it hits.

After the initial terror shock, my heart rate sky rockets. I breathe fast, I feel nauseous. I very rarely have the ability in these moments to think straight, my thoughts are in a blender on the fastest speed. Everything is fragmented.

The more it goes on, the more symptoms join the party. My head feels like lead, my legs are made of incredibly heavy jelly–but the middle of me doesn’t feel like it’s there at all. I might vomit. Colours become brighter, white becomes unbearably incandescent and black looks like a void I’m about to be sucked into. Eventually my vision clouds over.

My body is utterly out of control, and still spiralling. So it does that one thing computer techs around the world wearily ask:

That’s right, an unexpected reboot!

Fainting is the body’s way of taking human thoughts out of the equation, and restarting with enough basic functions to get the terror under control. Before… you know. I have a heart attack or something.

Problem is, it’s also absolutely fucking terrifying.

So, how do I avoid getting to that drastic point?

It’s actually simpler (and still harder) than it sounds.

I don’t fight it anymore.

When that bolt of terror hits, my initial instinct was to forcibly regain control of my body. I would fight to get my heart rate down, I would fight to stay standing, and I would fight the urge to vomit. More to the point, I was creating additional stress by trying to stop these things from happening. I was afraid of what would happen if I let the panic attack continue, so I did my absolute damnedest not to let it continue.

Rookie. Error.

It’s far easier said than done, but once you accept that it’s happening–it starts going away. It doesn’t hold power over you. The minute you realise that this attack isn’t putting your body in danger, there’s no need to fight it. The sickening thunderstruck sense is usually only a spark that needs more fear to grow, and that fear comes from fearing the symptoms of your own anxiety.

Panic attacks in this sense don’t last long for me anymore. Thirty seconds to a minute, long enough for that initial bolt to wash away. These aren’t generally caused by any identifiable trigger, which is what makes them different to anxiety attacks.

When I first started practicing this technique, I started by identifying the sequence of symptoms in the usual order they would occur, and how I could minimise any damage caused by them. Note that I did once split my chin open and break two teeth in a fainting episode!

So getting on the floor is crucial. When that bolt hits, I quietly and calmly lower myself to the floor and lie in recovery position. Then I just–let it do what it will until it’s gone. Every time I do this, I reinforce the understanding that these attacks can’t hurt me, and the next one is easier again.

An anxiety attack? Well. That’s another thing altogether.

ACCCUTE ANXIETY

On the surface, ‘accute anxiety’ or an ‘anxiety attack’ looks much the same as a panic attack. It hits fast, hard, and if it spirals out of my control you can bet I’ll end up on the floor.

The primary difference in my definitions of panic and anxiety attacks, is what causes them. An anxiety attack usually occurs in response to something. An unkind word from someone else, making a dumb mistake, being surrounded by too many people, or just the insane amount of reflective surfaces in Target.

Just as a panic attack will feed on the fear of the attack itself, anxiety attacks also need fuel to keep going. Problem is, there’s plenty of that! And it’s fuel that is a lot harder to dismiss, especially if I’ve done something spectacularly dumb.

Feelings of being stupid, inadequate, incompetent, isolated, crazy, weird, and other horrible thoughts about myself are usually circling about in that blender-like brain feeding the fire.

Of course I’m hyperventilating, curled up in a corner, having a breakdown because I am a completely useless piece of shit. 

And other charming things to say to yourself in crisis.

These can often feed into meltdowns, which just makes for a splendid day.

Symptoms include, but are not limited to: fast breathing, elevated heart rate, tight chest, crying, nausea/vomiting, diarrhea (fuckin’ yaaay, right?), tremors, inability to speak, cold sweats, clouded vision, heavy limbs, and a critical reduction in my ability to function as a human.

But here’s something else fun about anxiety attacks:

I can be having one right in front of you, and you would never know.

The other major difference between panic attacks and anxiety attacks, is I have greater ability to mask my symptoms in an anxiety attack. They aren’t less intense, and I am deeply suffering under all that make-believe, but sometimes it’s enough to look like you’re coping until you can get somewhere and break down. Which… I think is the life goal of most autistic people too.

Basically, if I’m having a visible panic attack, the shit has really hit the fan. I do not ever, EVER like people to see me this way. If it’s visible, it’s beyond my ability to control, and that is a pretty bloody bad day for me.

But–how to deal with it?

If I’m in an attack, it’s too late for prevention. We’re in damage control.

If I’m in public, my first step is to excuse myself to a quiet place where I can let go a little. Hiding an anxiety attack is exhausting. I need to get down to the ground, at least into a sitting position. I do find lying down to be the most effective calming position, though.

The darker and quieter a place, the better. Otherwise if I have my phone and earphones, some gentle music with my eyes shut. I can ‘disappear’ into music until my rhythms return to normal.

The horrible thoughts that fuel the attack will continue until I’ve soothed myself a little, and get the energy back to fight them. I almost always don’t want to talk about it during, or immediately after, the occurrence. It takes me hours, sometimes days, to process what happened and how I feel about it.

Often I’ll feel like a failure for not being strong enough to stand it.

The trick with these ones is to be able to stop the flow of negative thoughts. Stop feeding the fire, and it won’t burn–same as panic attacks. Just a lot harder to put into practice.

PROLONGED ANXIETY

This is above and beyond the most dangerous, insidious form of anxiety I know. This isn’t the intense anxiety you know is happening to you, it isn’t the whirling stream of terrible thoughts that make you sick.

It’s the days of feeling gross, on edge, grinding your teeth in your sleep, with an unsettled stomach and no explanation why. It’s similar to that feeling you get in the lead up to a big horrible event, only there’s no end in sight.

It grows so slowly it feels normal. Like depression, it takes over your life until you can’t remember what a proper resting heart rate feels like. You don’t know when the last time was that you ate food and didn’t feel sick. You’re not sure how long it’s been since you had a night where you were able to sleep, and not oversleep. It’s wearing you out and every day you feel more tired and you don’t know why.

You don’t feel like you can breathe properly, but what is properly? The longer it goes on, the deeper you sink into it, the more the symptoms grow. You’re on a hair trigger, will you scream, cry, or murder someone? Small things are irritating when they shouldn’t be. You’re restless, hungry for a taste that only exists in your imagination, and at the same time paralysed. You can’t… you just can’t, everything is too hard for some reason.

When did this start getting bad? Why? What has happened? It doesn’t seem like there should be any reason for it, and by the time you realise–you’re drowning. Lulled into a false normal bit by bit. When was the last time you didn’t have a headache? What is the deal with all this farting??

Your body isn’t as it should be, you’re not relaxed even when you’re asleep. Tension builds on tension, until eventually it explodes in an anxiety attack. And boy oh boy are they worse when they’ve been brewing like this!

So—what do?

Practice extreme self care! I don’t know if there’s any better excuse for having your favourite things on hand.

For me, that means scented candles (jasmine, frangipani, and gardenia!), a good quality blend of tea, some favourite shower gels (peppermint, and neroli jasmine… not at the same time, obviously!), comfortable snuggly clothing, and other items of general comfort.

At work I find having something to fidget with releases a lot of that tension in a less explosive way. Fortunately my new work sells electrical components like switches and buttons and wires, so I’m always able to find something to carry around and fiddle with. My favourite so far has been about three inches of double-insulated six-core copper wire. It was so bendy and fun!

Music, movies, games, all of those things that I can ‘escape’ into until my body calms down are also incredibly useful. As is the company of friends and family, both virtual and in meat space! Blogging has also become a source of self-care, and a critical part of processing and understanding how my brain functions. I learn a lot about myself writing these, as it forces me to think about things in a different way than I do when the thoughts are swirling uncontrolled.

The other really important thing? Celebrate. Genuinely celebrate your wins, however small. Whether that’s climbing a mountain, or brushing your hair. If it’s a success for you, celebrate it. We get far too caught up in our losses at times, but if you remember to celebrate the wins, they’ll help balance out the bad when you need them.

And take note of what your body is doing, and where you end up. You may not pick up the slide into prolonged anxiety this time, or even next time. But, if you begin now, you’ll start noticing the patterns and each time you’ll be better placed to rescue yourself sooner.

How do you cope with your anxiety? What do you experience?

I would love to know! The more strategies, the better!

On the outer edge of coping.

It’s been one of those horror weeks. My birthday was Friday just gone, and I am still recovering.

But that was almost a week ago now, wasn’t it? Shouldn’t you be all good now? Yes–and cue that intense sense of shame that I, a grown woman, am still struggling to function so many days later. It isn’t the alcohol that does me in, I wish it was–that would be so simple to fix. Don’t drink, recover fast. My alcohol hangover lasted only into the Sunday afternoon.

The rest of it I’m still wrestling with.

I did an enormous amount of hours at work in the two weeks prior, more than I’ve done in a long time. Organising the party was more stressful than I’d like to admit, they always are. I don’t know if I’ll bother again. I’ve got nine years before I have to start thinking about whether to have a 40th or not, maybe I’ll feel different then. Maybe I’ll be different then.

It’s unlikely. I was always that kid concerned that no one would show up to her birthday party. I get very worried that I’m not enough, not important enough that anyone will want to. Then I make mistakes like inviting the sorts of people that I want to connect with, and get crushed when they decline. I really don’t know how else to communicate with people that I’d like to know them better, outside of work or other social groups. I don’t know how to indicate that I want to be friends, so this is my way. I invite them along and hope they’re also interested in knowing me better.

And I should know better than that by now, but I don’t and all the same mistakes were made. I had a very good night in the end, and the quality of those who turned up for me was fantastic. Still, it’s just as well that I got merry enough before the end of the night to notice the absence of a few people who I’d been very excited to party with.

Because that is my other problem, I never seem to know the difference between someone accepting to be polite, and those who genuinely intend to come. They all make the same sounds and I get equally as excited. Then the moment comes and I’m confused. Why do people do that? Why do they make plans they don’t intend to keep? How is it more polite to leave me hanging, than to decline?

I don’t know, but the whole affair is stressful. I know people have lives well outside of my little party, and the apologies I could understand. None of my attempts to widen my social circle were accepted, though, and every decline there felt like a slap in the face. All of these were people with whom I had discussed socialising with before. Nothing ever came of it. Nothing ever does. I go home after these discussions excited that maybe I’ll be invited out, but it never happens—I see the photos pop up on Facebook and wonder again: why do people talk like they want to make plans, and then leave me out?

The only reasons I can ever come up with is I am forgettable, unimportant or just a burden to have around. Not fun.

So that cycle plagued me, the deep sense of insecurity that almost everyone invited was not my friend by choice, but someone who I had tagged onto through my family. That I wasn’t able to generate my own party crowd, because the people I know here in town aren’t interested in socialising with me. It’s a heavy feeling, and thankfully one that was offset by being surrounded by truly wonderful people on the day.

It’s no wonder that with weeks of that, by the time the excitement died on Sunday I was destroyed. I’ve been clenching my teeth a lot, my whole face aches from it. I had panic attacks more intense than any I’ve had in a long time on Monday, lost my sense of time and became completely convinced that the overnight shift I’d signed up for was next week–and it wasn’t. This I didn’t realise until it was too late, and thus began the next spiral.

How was it that I could still be this confused, overwhelmed, and tired after just a birthday party? Not just the next day, but for two days after? I felt like an absolute failure as an adult, a failure in my menial retail jobs, and any hope I had of returning to full time professional work was now a knife that stabbed into my self esteem. Will I ever be able to do the sort of work I want to do?

I don’t hate retail, but if I’m going to spend my life working then recovering from work, the work should be something that at least satisfies me. I have to devote my energy to work, there’s no choice there–I need to pay rent. It just seems to be the same endless cycle of the same to go home, sleep, collect enough money to pay rent, and repeat. It doesn’t make any sense to me, but my one hope is that I will find a job that is worth that sort of energy. But–if I don’t even feel like I’m managing retail, then how?

I already got fired once this year for not coping with the demand of a professional job. I want so badly to believe I’m capable. That I don’t have to live in this cycle forever. That I can find something that makes me feel like a success, and not a barely-scraping-by pile of shit.

Reality is a bitch.

Right now, everything is too loud. I want to watch TV but the sound screams on the lowest volume. I went to the supermarket and came out shaking, even though I kept my sunglasses on while I was in the store.

My doctor would say I pushed myself too hard, did too much work too suddenly. But what option do I have?

I’m just trying to keep up here. I know it will get better, because everything was fine two weeks ago. Maybe I just got so excited about that feeling of coping that I really did just run myself straight into the ground. Even though I did far less than my sister does in an average week, here I am struggling to function. Feeling somewhere between nauseous and tears, wishing that I could just stop the world for five minutes and catch my breath.

Hating myself because I can’t seem to keep up, no matter how hard I try. I do alright for a while, and then this–I hit the wall. I crash.

I’m on the outer edge of coping. Not drowning, but nor am I swimming confidently. Getting through one minute to the next, building up strength to run headlong into the next wall. That’s how I do.

 

 

How I compensate for my lack of social understanding (and how that also is a trap).

One of the key stereotypical aspects of autism/aspergers is the inability to read the finer points of social interactions. It’s true of most people I know with an ASD diagnosis, and like any autistic feature it presents differently in each individual.

There is, I’ve discovered, a secondary issue that comes with this lack of social awareness that develops as autistic children become autistic adults. It seems to be more common in those with an internal presentation, but who am I to say I know what goes on in anyone’s head?

The problem is this: we are aware that we have social deficits in reading situations, and overcompensate.

Deeper understanding of an interaction isn’t natural to me. It doesn’t arrive in a neat little package at the time, I don’t listen to someone’s words and thing ‘they mean something else’ or ‘this is definitely genuine’.

Instead, I take in the information and react to it on face value. If someone says they’ll do something, I nod and agree–yes, they will do it. If someone delivers a back-handed insult, disguised as a compliment, I’ll take the compliment first. Perhaps I’ll get a small inkling that there was something else going on… but I won’t know instinctively what the person was actually saying.

Not until later.

Deciphering the ‘true meaning’ of an interaction is more like wading through a literary text and picking out the themes and symbolism to work out the author’s message. It’s time consuming, inexact, and based on the premise that the other person put as much effort into coding the message as you did to decode it.

Everyone does a little of this after-process, especially after odd interactions. For me, it occurs after almost every conversation. It keeps me up at night, trying to work out what cues I may have missed and how I should have interpreted a situation differently. It’s an active process that requires quite a lot of brain-power to complete.

And it’s the basis for oh-so much anxiety.

Because here is the problem. I am aware that I have an impaired ability to decode situations on the fly. I also have thirty years experience in social interactions, and learnings from those that can be applied to analysing new situations.

My tendency isn’t just to miss the meaning of an interaction as it takes place, but to read too far into interactions when I analyse them later.

I find myself critiquing word choice, stance, tone, level of distraction–all things that I know academically can communicate extra bits of information. I look back to past interactions with that person and try to match up the similarities like a forensic investigator.

So I’ll get offended by throw-away lines that I decided were ultimately an insult because of how the person ordered their words; my default setting is to err on the side of caution and look more for threats I may not have seen.

Sometimes I get it right. Sometimes I even see things that those gifted with intuitive understanding of interactions don’t see. My process is based in logic and prior learning, so if human beings were rational things it would always be spot-on.

This compensatory method of deciphering interactions after the fact is a dual-edged sword. On one hand, it allows me to mask my lack of understanding by providing me with the information I missed at the time. On the other, my awareness that I miss things drives me to look for more than is actually there.

Tragedy of a cat-lady

There are moments where I feel like a child for the way I react to things. More often than I like, and also in the way that I hold onto things that should have been long past. It’s embarrassing, and I do feel ashamed for these feelings that I just can’t seem to let go of. It’s dumb. I know it’s dumb. I’m an adult… and I shouldn’t be sad over things that are really pretty minor.

Yet, they’re still devastating to me.

One of these bigger wounds that won’t heal is the loss of my two cats. This is where people usually roll their eyes and go ‘oh no, not this again’ because for most people, they were just a couple of animals I talked too much about. Still talk too much about.

It’s been over two years since they were rehomed.

Yes, rehomed. They’re alive and happy, living in the care of a wonderful couple. I couldn’t wish for more for them. I know they’re adored, as they deserve to be. They’re not gone completely from the world, it should’t hurt this much still, should it?

It always has, though. The reality of living in a country town and only having outdoor cats was that they often came to early ends, be it by car, snake, or otherwise. When they went missing, I scoured papers for a possible ‘found’ notice. When they passed, I cried myself to sleep for months. I feel sick to my stomach when I look at certain small breeds of dog after what two of my family’s dogs did to a litter of kittens.

I mourned all of them intensely. Topsy, Turvy, Jessica, Misty, Belle, Zelda, Gomez. My sister’s cat, Quinn, and Mum’s cat Laser.

I loved them deeply, but even then there was something special about the crew I adopted in Queensland that went beyond even that love.

Bond, ‘Rental Bond’, Mr Bond, Mr B… or sometimes just B. My housemate and I adopted him after his initial owner gained a housemate with allergies. He had a habit of sitting like a person, and was very particular about being clean. He slept in my room at night and pretended like he could keep me safe from loud thunder.

Bond’s favourite trick was to get on top of things. He liked climbing up and sitting on your shoulders, even when he became bigger and super heavy. You could bet that if you stood still for half a minute, you’d have Bond trying to find a place to sit on you.

When I had bad days, it was always Bond who came to me. He was an absolute sweetheart, and he just seemed to know when I wasn’t okay. He’d cuddle up and start licking my hair down nice and neat.

Percival, Percy, Percy-boo, and a lot of the time just Boo.

We adopted Percy as soon as he was ready to leave his mother, a Burmese-cross. He was the dominant little fatty of his litter, and though he bossed his mother around we were worried about introducing him to Bond–who’d got quite big.

So we distracted Mr B with a bowl of his favourite–tuna chunks–so he wouldn’t immediately attack the new kitten as soon as we set Percy down. That was a match-up we got so very wrong.

Soon as his paws were on the floor, Boo marched up to the bowl and pushed away a very surprised Mr B. Bond never got the upper paw over Percy, though they did learn to share.

The boys eventually became best friends. Like Bond, Percy didn’t like sitting like a ‘proper’ cat. Both boys had very affectionate homes before us, so they may never have realised that they are not actually people.

They were smoochy boys. It wasn’t uncommon to wake up to the pair fighting over the best spot next to you.

It was a strange family we had, my housemate and these two rascals–but I loved it. I loved coming home and being greeted by those two (very annoyed, because how dare I go out!) fuzzy faces, and I loved that I could sit on the couch with one or both by my side and never feel quite alone. Percy did love our binge-watching of TV shows, though he got annoyed if I tried to actually use the computer for too long.

And if I happened to sit on the couch with a blanket, you could just bet this would happen.

There was a lot going on in my personal life while I had these boys at my side. My work situation went drastically downhill, and only went from bad to worse as I opted for another job (that didn’t work out). I loved where I lived, but missed my human family in Victoria. Without reliable work I felt worthless, anxious about everything from whether I was developing a tumor (I wasn’t, and I knew that) to fear of the world ending.

There was a lot that I wasn’t coping with. I felt sick just leaving the house–but I did it. I never wanted to eat, but I did it. I spent months unable to sleep properly, but I still kept trying.

Not because I valued myself enough, I didn’t. Not at the time.

But because if I didn’t get the groceries and look after myself, the boys would go hungry. When I fed them, I remembered that I too had to eat. And when I hadn’t managed sleep for a day or so, it was usually Bond who would sit heavy on my chest and bat my face if I tried to move.

My phone is still full of their photos, my head is full of their stories, and woe to anyone who asks because I will speak of them as if they are truly still my boys.

Vesper, or V.

Vesper was the third feline addition to our family–somewhat later than Percy and not too long before we moved to Victoria. She’s a lilac point Burmese, and though she came from a home of many cats, she truly did deserve a place on her own. She has this now, living with a disabled woman who relies on her company.

With us, Vesper never truly got along with the boys, but she loved to sit on the couch just above my head and watch what I was doing. Initially she was adopted by a housemate we had, who was supposed to be staying longer, but had to return to her home overseas far sooner than expected. I made the choice to rehome Vesper in Brisbane before we left.

Strangely, her new home ended up being in Victoria anyway.

I never felt that she was ‘my’ girl in the way I felt of the boys, but she was a darling all the same. The one and only time she accosted me for a cuddle was one horrible afternoon when I’d been unable to sleep properly for almost three days. She sat on me and purred me to sleep.

Needless to say, I adored them. They gave me so much more than I could ever give them. How do you repay anyone, especially a cat, for giving you hope and purpose and reason when you need it most? Even on the worst of my worst days, my mood responded to their contact.

I got very excited at the prospect of moving the boys to Victoria with me. They were such an important part of my life, and I had a chance to finally share that directly with my family! I was proud of them, incredibly so. I couldn’t wait for my family to meet these two furry heroes who made bad days tolerable and good days amazing.

It was a pretty silly thing to get excited over, I guess. But the boys were a part of my world that I was glad I could take with me.

I wish things had worked out better. If I’d been able to find work, or a place to live, or anything in time–perhaps they would have been able to see what I did.

Instead, I found the boys a loving home where Bond now wanders freely around a farm–and Percy (the sook!) prefers to stay inside and away from anything remotely scary. It’s the best solution that was available, but that doesn’t mean it didn’t hurt.

It still hurts. I lived for a while in a shared house, alongside two cats–and that helped a little. Especially when Lily came into my room to kill spiders for me, and Doc would have long conversations about why I hadn’t fed him yet. Even though I wasn’t the one who fed him.

Now, I live in a house on my own and the hurt is amplified so much more.

Is it stupid? Is it as childish as it feels to still feel the hurt this fresh after almost two years?

I know they’re happy. That should be enough, right?

External vs Internal: moving away from gendered profiles in autism.

There are problems inherent in the way that ‘female autism’ is being researched. Curiously, they appear to be the same problems that occurred in the initial research and diagnosis of aspergers. The same language and biased research issues that led to the missed diagnoses of so many autistic women looks set to repeat unless we become aware of the implications of gendering a condition.

Understanding that females can also be autistic is an understanding long overdue. The misconception that autism and aspergers were conditions that ‘belonged’ to males was caused by a focus on males as research participants, and lack of understanding in how autism presents in different individuals.

As researchers and diagnosticians continue to build a ‘female profile’ of autism, we should be cautious of the suggestion that this presentation only occurs in females. It doesn’t. Just as some autistic women have a textbook ‘male’ presentation, so too do autistic males display symptoms that are currently considered ‘female’.

Therein lies the danger. By qualifying a set of symptoms as either ‘male’ or ‘female’, we encourage diagnosticians to disregard a potential diagnoses because it does not fit the assigned sex of a person. Those who research their particular presentation before seeing a therapist may feel there is something extra ‘broken’ about their brain if the ‘gender’ of their symptoms does not match their own gender expression.

Instead, I propose an alternative way of classifying the two autistic profiles that escapes gendered language.

Through my research and personal experience, I believe in every person (autistic or otherwise) there is a particular factor that describes how that person will react to most situations. As autistic people frequently find themselves in situations that are at ‘odds’ with ‘normal’ culture, how that person views their place in relation to the world is highly important.

It comes down to this: external versus internal.

External autism is how I would describe the textbook ‘male’ presentation. When the individual discovers a difference between how they operate and how the world operates, that individual is likely to come to the conclusion that they are right, and everyone else is wrong. This leads to a more open and authentic presentation of their autistic symptoms. They display more obvious social disconnect, are more likely to act in appropriately, less likely to bow to social convention, and often have a level of self-assurance in all that they do.

Internal autism (or the basis of the ‘female profile’) is the opposite. An individual of this presentation, when faced with a disconnect, believes the world is right and they are wrong. They are more likely to ‘learn’ social rules as a means of becoming ‘right’, to be crippled with self-doubt, to mask behaviours in a way that complies with social conventions, and are often misdiagnosed or missed completely due to their ability to play the part.

Both sides of the autistic coin are weighted with their own pros and cons, and through this lens of internal and external we can see how typical autistic behaviours manifest differently.

An externally autistic person, upon being caught in a conversation they find utterly boring, may well just say “You’re boring me now” and end the conversation with little understanding (or desire) of how to politely exit a conversation. An internally autistic person caught in the same situation may instead ‘play along’, nodding as they feel appropriate.

The externally autistic person takes charge of the situation as they believe they are correct, while the internally autistic person lets majority rule.

I would love to hear your thoughts regarding this classification of autism. On the mark, or miles away? How else would you classify autistic types?

Definitions of success and self.

Everyone defines success differently. For me, I always felt that I had the best chance of finding success and fulfillment through a career. This worked with my drive to improve and dedicate myself wholly to the place at which I was employed. Even  as a supermarket supervisor, I felt the importance of my role in looking after the cashiers and ensuring customers had a wonderful in-store experience.

I never could just clock in, clock out, and collect the cash.

Other factors in life that I might have deemed as points of success, like having a family or obtaining a driver’s licence, always felt out of reach. It wasn’t that I wouldn’t like to have them, but my attempts to achieve those goals never went anywhere.

Driving is still the same intimidating rush of cars and lights and sounds, confusion in coordinating my body to push the right pedals at the right time, and intense worry that I will misjudge or react incorrectly at a crucial moment.

A family requires a stable foundation, usually the relationship between two people who have a strong enough connection to support dependent beings. My relationships to date have been short, almost laughable–and with minimal hurt after the break up. Sometimes because I’m already bored by the partner in question, and in all cases because I was never significantly romantically connected to them in the first place.

I struggle to connect with people in general. I can like them, admire them, have a strong desire to be around them, and even love them… but never have I connected with a person in such a way that I needed their partnership. Some partners I kept past the point of boredom purely to say that I had a partner. Others, I feared that I would lose as friends if the relationship broke down.

Maybe there’s some miracle person out there who is the exception to the rule, but to date I’ve not experienced anything that would give me confidence in having a family. Not to mention the questions that follow on, whether I would be a fit mother (I certainly couldn’t be a stay-at-home mother), and would I be able to connect with my children if I had them?

I fixed all this with the idea that I would fulfill myself with a career first, and if the rest happened–it would happen. I threw myself at the university wall repeatedly, always starting well and eventually crumbling as I became overwhelmed by the constant demand. I am still debating whether to go back this semester, or finally accept that the system is beyond my capabilities, especially as an online course.

The biggest step I took toward this career dream actually occurred last year, where I managed to find employment as a marketing coordinator. But the pressure of that job too wore me down over time, until I could no longer keep up with what was required and I was let go. Partly because the business couldn’t afford to invest in me anymore, and partly for my own good–my manager recognised the toll it was having on me.

Which leaves me now seeking work that will satisfy my financial needs. I’m leaning toward retail positions, this is what I know, but I also know that it won’t be long before I become dissatisfied and empty in the repetitive role. Retail has always been a means to an end, a stepping stone on the way to something else. A way to pay the bills until I found work that made me feel proud.

There’s nothing wrong with working retail. I’ve never believed there is, but I know it doesn’t make me happy in the long term. Success to me is finding that place in life where I can be happy. A job I can be proud of isn’t about the type of work, or the money paid, but knowing that I didn’t settle for roles that paid the bills. It’s knowing that I kept reaching until I found my place.

Since being let go, I’ve really questioned my capabilities. I’ve had to let go of the idea that I could work in overly tense and fast-paced environments. I’ve had to let go of the idea that I will ever be an in-demand marketing or PR executive. The pressure would likely break me. I wasn’t able to handle what was required in a small business; my shiny dreams come with dark realities.

So that leaves me here, at a loss. Wondering if I am truly only capable of carrying out these retail jobs, and what that means if it’s true. The possibility that everything I ever wanted to be is unrealistic and beyond me—hurts more than I can say.

My career was supposed to make up for my failings in other areas. I don’t know where to go from here.

What causes autism? Some theories.

Debate over what causes autism, and how to prevent it from occurring, remains inconclusive. Theories range from biological factors, to medical interference, and even to how a child was raised in early life.

The vaccine myth.

The theory that vaccines cause autism is unfortunately popular.The article published by Andrew Wakefield in 1998, which suggested the Measles, Mumps, Rubella vaccine (MMR) was responsible for behaviour regression and developmental disorder, was repeatedly refuted and eventually retracted in 2010.

The vaccine theory relied on two factors: one, that children often displayed autistic symptoms around the same time as receiving the MMR vaccine; and two, that autism had become ‘epidemic’ as vaccination became common practice in society. The more likely reason for the surge in autism diagnoses is a better understanding of the condition, changes to diagnostic practices and increased awareness–particularly among educators.

That autistic symptoms arise in the same developmental period as the second dose of the MMR vaccine (usually around the age of 4) is purely coincidental.

Even if the vaccine theory was correct, and I don’t believe it is, I fail to understand the logic of refusing to vaccinate children to decrease the risk of developmental disorder. Autism isn’t exactly a fun bag of kittens every day, but it is perfectly possible to live a long and happy life as an autistic person. Even those requiring extreme care are capable of being happy and healthy people.

Refusal to vaccinate increases the risk of contracting avoidable (and deadly) disease, both to the unvaccinated child and those who are unable to be vaccinated for medical reasons. It just doesn’t make sense to me.

Vitamin D deficiency.

This one is interesting, because I have extremely low levels of Vitamin D. I know, I know–I should go outside from time to time.. but maybe that’s not the only factor? I take supplements daily, which I find gives me the energy boost I’m often lacking.

Women who are deficient in Vitamin D during pregnancy are more likely to give birth to a child with autistic behaviours.

Inability to properly absorb and process Vitamin D may also be one of the many genetic factors that contributes to an autistic profile. Deficiency in Vitamin D may not be a cause, but a symptom–and perhaps lead us to a genetic marker as we build a greater understanding of how autism occurs.

Genetic factors.

This is the theory that makes the most sense, both in logic and in my own family experience. Autism is a condition of particular traits, that by their combination and intensity in a single person cause that person to diverge from what is known as ‘neurotypical’ (NT). You could think of this combination as a recipe, almost.

In most cases, and definitely in mine, you can spot autistic traits across the family of a diagnosed person. While the behaviours may be similar, they may not have the same intensity, obsessiveness, or rigidity of the autistic person–but they’re certainly there. Some in the family may have an autistic trait or two that is extremely intense—but not any others.

These traits are spread among parents, aunts, uncles, grandparents and beyond. When enough intense traits are passed down to a single person,  that person becomes diagnosably autistic.

This also explains why many people feel everyone is ‘a little autistic’, which is in some views true–and others false. Milder examples of autistic behaviours are common among the general population.However, while an ‘allistic’ (non-autistic) person may understand elements of a behaviour, they are less able to understand how multiple intense traits affect an autistic mind.

So you may think of autism as caused by the right mix of ingredients passed to an individual.

Interestingly, my genetic profile is significantly different to those of my undiagnosed siblings. I am the only right-handed child, the only one with grey eyes (the others are brown), and of us four I have the shorter, thinner-boned build. These genetic differences between me and my three siblings hint at my getting a number of recessive genes, some of which may have been autistic markers.

Brain compensation theory.

This does fall in with genetics as well, but an interesting study on autistic children and their non-affected siblings discovered that unaffected siblings also have a similar neurological signature to their autistic sibling.

Decoded, that means that the structures of the brain used to process particular information have a similar decreased ability as compared to children without an autistic sibling. However, unlike both their autistic sibling and their typically developing peers, unaffected siblings showed activity in other areas of the brain.

That suggests that unaffected siblings have created ‘other’ pathways through the brain to achieve neurotypical behaviours. I love this, because it shows just how adaptable the brain is. It also firms up the nature of autism as genetic, and explains how siblings can exhibit similar traits to their autistic sibling but not at the same intensity. Some compensatory structures may not be as complete as others, meaning that the trait will be more present in that sibling.

I find this especially interesting, as my sister is highly sensitive to tags and seams in her clothing. Far more than I am! That sensory sensitivity may be a trait that her brain has not fully countered.

Nurture and autism.

I’ll talk a little about this, because I think it’s relevant. Autistic behaviours can be adjusted over time, especially among those in the Aspergers category. I believe that autistic people are capable of building their own compensatory structures in the brain. We need to find our own way to achieve stability. This doesn’t mean a cure–simply working with and around our weaker points for a solution that suits us.

Early intervention and parenting methods are critical here, which is where I feel extremely lucky. Though I didn’t know I was autistic until a few months ago, my parents were not the sort to give in to picky eating habits. You ate what was on the table, or made your own food. I believe the firmness of that rule is one of the primary reasons why there are so few foods I don’t eat–I was never able to avoid anything long enough that it tasted wrong/unpleasant.

As an adult, I allow myself to not eat the things that really do bother me: pork, any meat with bones still in it, any meat that still resembles the animal it used to be, celery, and zombie toes broad beans. The list of things I won’t eat is actually quite small. I will pick around bones, but I really don’t like it. I’ll also eat mashed potato, though the texture bothers me most times.

I believe my lack of serious food aversions is mostly due to being encouraged to try a wide variety of foods as a kid, and also my curiosity regarding taste. New foods and drinks intrigue me, so I have to try things at least once! Or perhaps, it was simply never a severe factor for me.

We were also raised in a very structured and supportive environment, and the only real upsets I can recall having usually involved things like moving house, moving school, and other unavoidable moments of change. For the most part, my family life synched well with the parts of my autism that liked things to be a certain way, and for things to happen in a way that was consistent and predictable.

We went to school through the week, to bed at a particular time (even when I was in my last years of high school, I had a bed time. I hated it, but looking back it was another part to the structure of my day that I could rely on), there was often sports on Saturday morning, and during the football season we would generally catch up with family friends to watch the game and eat together.

So I was lucky in a lot of ways, that my family created an environment that curtailed some of the more annoying aspects of autism, while providing the structure I needed to feel secure. Though at the time, it was simply how our family operated–not any concession for an autistic mind.

I give in to it more as an adult, especially with food and clothing. I buy my own, so if I find that I’ve purchased a shirt that is uncomfortable and distracting to wear–it’s my own loss if I never wear it. The same goes for food. Clothes get rotated to the back of my wardrobe and eventually donated to charity. Some are too itchy, some feel too restricting, and some just make me irritable and I can’t articulate why. I did get myself to wear skinny jeans, though I prefer not to–and I still won’t wear shorts. I don’t even know why I won’t wear shorts, I just hate them.

I can make these choices as an adult, because I have been through the process of attempting, tolerating, and know for myself if it’s worth persisting. I also know I can work around things, like eating all the peas first when someone mixes them with the marvel that is corn (why do people ruin corn like that?). I’m in a space where I can do things in my particular way, and so long as it doesn’t hamper my ability to get things done, there’s nothing wrong with that.

I’ve rambled a lot and gone way off point–each autistic person’s ability to adapt and build compensatory structures and strategies will depend on the severity of the symptom, awareness of the individual in working toward the goal, and the age of the person. It can be done, though, it’s up to the individual to decide whether there is value in being able to eat a food, tolerate a situation, or wear an item of clothing. Sometimes the level of work to get to a point of tolerance isn’t justified for the outcome, or the time and number of exposures it would take to achieve the goal (remembering that each exposure will cause some level of distress) isn’t worth it. While it’s definitely ‘possible’, it may only be after thousands of exposures and unknown distress.

Are there any other theories you’ve heard regarding causes of autism? I’d love to research them!

 

Why mental illness is not an excuse to be an asshole.

This doesn’t apply to 99.99% of those diagosed with a mental illness.

However, the 0.01% that it does apply to are a major contributing factor to the ongoing stigma and misinformation regarding mental health.

It’s as simple as this.

Mental illness is not licence to be an asshole.

Does that sound harsh? Yes, there are conditions where it can become incredibly difficult to maintain proper social conduct with others, but for any person who grasps the concept of good and bad behaviour, let me say it again:

Mental illness is not licence to be an asshole.

For a while, I had a friend by the name of Mia. Mia had some very genuine mental health issues. Those who falsely claim to impaired mental status as a scapegoat—that’s a whole other blog. She suffered from deep anxiety and chronic depression (we both did at the time), struggled to leave the house more often than not, and was a type two diabetic. She had also been diagnosed with aspergers.

At that time I wasn’t aware that my own mental situation was also an autistic one, so I took it for granted that what she told me regarding autism was truth.

She said that occasionally she needed to info-dump on people, ramble on until she’d finished the topic–and that I liked. I wasn’t always wholly interested in the subjects, but I do love listening to people talk about their passions. I do recognise this need to over-explain and tell stories as they happened from beginning to end, and if you do happen to get me started on a subject I love… you may be there a while. This blog (and the length of the blogs!) is testament to my need to just get words out at times. Some of the things she described were perfect examples of aspergers.

Some, I now recognise, were not.

I don’t remember what the disagreement was about. Like many aspies she had considerable difficulty accepting alternative points of view, and would argue her point viciously. More than once she became so aggravated by the intensity of the discussion, she turned the conversation to personal and unnecessary attacks.

There’s nothing particularly wrong with that. Arguments get heated, things get said that aren’t nice. It was what would happen after the situation had cooled and olive branches were being extended that I was never completely okay with.

When one half was apologising for poor conduct, at a point where a return apology was expected, she would give this instead:

‘Well, I have aspergers so you just have to accept that I’m like that.’

And for me, at the time, I didn’t know enough about what might be going through her mind to really comment. So I left it at that, and over time she demonstrated repeated disdain for the feelings and general existence of other people. In understanding that aspergers causes social issues that involve missed cues, we did suggest that rather than blaming her brain for being a twit, she accept her behaviour and apologise for it.

Because that is the difference between someone who is an asshole, and someone who is not. Both can screw up, but only assholes will seek to blame their behaviour on factors outside of their control.

Others, including the neurodivergent, will recognise behaviour that is unacceptable. It may have to be explained, the cues may need to be highlighted, but these people are willing to work on their behaviour.

You can probably guess what she said when we suggested that if her behaviour was out of her control, it might be something to talk to her therapist about working on.

You got it.

She saw aspergers as an explanation and excuse for any behaviour that upset or hurt those around her, and expected us to simply tolerate it. I highly suspect some of these incidents weren’t aspergers-related, but greed-related actions for which aspergers was a convenient excuse–and that is another story.

Yes, mental illness can lead us to be less than our better selves. It can explain why something occurred, but should never excuse it. You have the choice as to how you handle what happens next. Whether you take ownership of your actions and work towards bettering them, or expect those around you to absorb the impact of your less-than-okay is what makes you an asshole or not.

Not your mental health.

WTB: Telepathic communication device for making friends without alienating people.

I don’t understand people. I really don’t. I don’t know how it is that so many people seem gifted with this ability to speak without words. Is it telepathy? Are you somehow beaming meaning at each other via mysterious brain-lasers?

Whatever you’re doing, I don’t seem to be able to do it. I say things the wrong way, or at the wrong time, I give the wrong response, or more often than not–I don’t speak at all, when there’s something I should have said or done.

Some of my early school memories are literally of standing behind trees, trying to divulge the secrets of making friends. Twenty years later and I’m still as clueless as that little girl with her cheek pressed against the bark.

School at least offered a place where you could become known–and eventually friends–with those you saw regularly. Adult life makes this so much harder, even those who know the secret to interpersonal communication struggle to break out of their ‘friendship silos’. I have very few friends of my own in this town, and I have no idea how to go about connecting to more.

This realisation occurs to me every so often, when I exhaust the one (sometimes two) options for a venture to the movies or new restaurant. This time it hit me while I sent out invitations to my 30th. Almost everyone on the list who lives in the local area was a family friend, or friend of a friend that I don’t actually know well enough to feel comfortable making plans with that don’t involve the mutual friend. The rest were family.

My own friends, and I do have some wonderful friends in my life, are scattered everywhere but here. I love each and every one of them without reserve. I feel guilty for wanting more than I have, but there are days where I wish that I could text someone in the morning, and meet with them for lunch. It feels a little pathetic that my social interactions rarely go beyond my family. My family is fantastic, but they have their lives and friends outside of me, and I have… an overly comfortable blue couch.

Work is where adults are supposed to make friends, or at least this is what the internet says. Yes–I have actually Googled ‘how to make friends as an adult’.

As far as I know, I’m not unpleasant to work with–nor am I hard to get along with in general, and in most cases I’m happy to do whatever pleases the people around me. I have conversations with those I work with, suggest things to do, laugh and joke–and I think I’m doing well.

Yet, when it comes to making the jump from ‘work friend’ to ‘actual friend’, something goes wrong. I don’t know what. While others connect and relax together, I hear of it in stories after the fact. I’m not arrogant enough to think I should have been invited–but I do wonder what I’ve done that excluded me from participation.

Have I done something? Is there some secret code I’m not using, something that makes it clear to others that I want to be involved?

Or worse, am I just forgettable? Blended so far back into the scenery that you’d no more invite me to something than you might a kitchen chair.

When I do, and very nervously, invite people to spend time with me (in the hope of establishing an on-going friendship), the invitations are inevitably declined. Other priorities trump whatever I suggest, or perhaps they are just not interested in being further involved in my life. I don’t know.

I do understand, at this age most people have their ‘friendship silos’ firmly in place. It’s hard breaking in to a group, but I watch the people come and go and interact and wonder why I can never seem to get ‘inside’.

I’ve been told it can be hard to get to know me. Am I giving signals of disinterest? I don’t mean to.

The other suggestion for connecting with new people is interest groups, and that is one where I’ve had previous success. I’m looking at you, Melbnano and Brisnano. Groups for everything exist in the city, so finding the most wonderful bunch of 20-something and up assorted nerds willing to talk about ninja zombie erotica was as easy as looking up the local NaNoWriMo group.

Where I am now, the local writing group is lovely, but more interested in literature and memoirs than secret agent school girls discovering their teachers are actually drug lords. Most of my interests, like writing, aren’t group activities either–which increases the level of difficulty.

What do I do, then? I would love to create a social life for myself, take some of that burden off my family and really find myself a place in this community. To feel properly involved, and not a tag-along afterthought.

How do I get to there? What am I doing wrong? How do I become someone people think of when organising things to do?

Alternatively, if you could sell me one of those brain-laser telepathy kits, I’d be much obliged.