Maybe it’s actually burn out.

Autistic burnout. It’s a phrase that is used quite a bit. Often in tandem with shut down and even at times connected with a meltdown. In the sense that all of them are response or reaction to living as an autistic in a neurotypical world then it is probably right to connect them. I’m pretty sure though they are all a bit different.

It’s occurred to me more recently that when I self-destructed in my last real job that whilst that moment of destruction was at some level a meltdown, the fallout and result was a much longer term response of shut down or burn out.

Amythest Schaber explains shut downs here

And burnout here

In my experience it seems that I was shutting down in the shorter term to cope on a day to day level, and yet over the much longer term, I was really experiencing burnout. I had worked for a little over 2 years in an office environment. It was busy, I had some responsibility for some other people, I had many competing demands for my time. I spoke to many people a day on the telephone in both support and sales aspects of the business I was working for. I worked long hours, I was never free from the job as emails, text messages and phone calls never stopped at the end of the working day or week. These even occurred regularly in vacation times. I was working overtime passing, keeping it together.

Overall I was doing a good job, the business was doing well and all my requirements were being met. Unfortunately, though it was never enough, and this was compounded by an employer who micromanaged everything to the nth degree. This meant that in a lot of my project based work I engaged in as part of my role, I was never able to finish or complete things. One of those roles, for example, was updating the company website. I was the only one in the company with any HTML knowledge and was regularly required to make changes. These changes were so often over micromanaged that I found myself in a state of despair.

An example was in a change of a banner on the website. A new banner created, sent for approval, approved by the boss. I would then make the change to the site. Half an hour later I would receive a call or an email saying they needed the colour changed or the font changed. It was a perpetual state of never being able to finish anything. This was coupled with my employer regularly calling to have me do some particularly urgent task. This, of course, meant changing up what I was doing and working on the urgent thing. That in itself can be really difficult for autistics and Luna Lindsey explores this concept in Spline Theory here.

In and of itself those changes to urgent things were difficult enough, but I had been somehow managing them. It became apparent in time though that I was somehow meant to still have completed the same amount of normal work task. None of this made sense and it utterly exhausted me.

I can see in reflection that I pretty much went into multiple shutdowns over the time I was there at this position, however, what I didn’t really recognise until more recently was that I had in fact gone into burnout.

The thing that has been occurring to me the most in recent times is that it has actually taken me some years to come out of that burnout and it is really only in recent months that this has occurred. As Amythest says in their video the only healing for burnout is time. Sometimes it is a lot more time than expected.

But then again I think it makes sense that it has taken so long too. After what was in effect more than two years of strenuous effort in passing and managing the whole situation, a few years experiencing the resulting burnout seems legitimate to me.

Personally, the biggest factor has been in motivation to do the normal stuff of life. The idea of actually getting a job again has seemed utterly unattainable. It has been only in the realisation that just in these last few months that such a thing again seems possible that I was, in fact, experiencing a prolonged burnout.

I am pretty convinced then that the takeaway of all this is to be gentle with yourself or your autistic loved ones. This should go without saying, but if they are experiencing burnout this is all the more important. The amount of time it might take is unknown and unpredictable, but I suspect has some connection with the level of stress and overload the effort put in the and the length of time it went on for.

Autistic Burnout seems to be a very under-researched area. It’s time, I suggest that some good researchers took it on and helped us to better understand it, of course with the help of actually autistic people on their research teams.

Shouldn’t you be writing that book?

well Yes I should be writing that book. That book that seems like it is going to happen, really going to happen. That sense I had that something about my life might just be worth writing about.

I sent my initial proposal to a publisher this week and they are keen to speak with me and sent me a proforma with all these bits to fill in. This whole crazy idea is suddenly becoming real, or at least potentially real.

But here’s the thing, I basically have a Phd in screwing things up for myself. I have lots of ways of doing it, meltdown with the boss is a pretty regular occurrence when I am working. But the most prevalent thing in my arsenal is that procrastination thing. Putting it off, finding other things to do like writing this piece istead of writing chapters for the book and getting into the proforma thing. At times I get myself so busy in doing those other things that the real things, the important things, the things that are going to make a difference in mine and perhaps others lives seem to just flitter away or run through my hands like grains of sand slipping between my fingers.

So then shouldn’t I be writing that book. Well the short answer is a definitive yes, but the loges one is a yes, but, kind of answer. Yes I should, but fear of failure, anxiety and worry about if it will really happen can be really debilitating. And then there is just this whole thing of maybe I’m just imagining that this could happen. Maybe I am just in a kind of fantasy land that I can bring enough words together to make an actual book happen.

And so here I am on my little blog musing about it. Instead of doing it I’m doing something different. Oh what a surprise.

It does occur to me though that those of us who are neurodivergent, those of us with mental health issues, and those with other chronic conditions might just be an expert at doing this procrastinating thing too. I know I’ve come across some that are. It makes me wonder about the source of it. The source that makes me in a sense run from doing things that can be wonderful and successful and do other shit that just doesn’t really have that factor to it.

I mean I am aware I can write a reasonable Essay, a reasonable blog article type piece, but can I actually pull it all together and make the transition from part time blogger to actual author. I know others have done it and I stand in awe of them and hope I can do it too.

I do thin though that part of the whole distraction thing is that there are all those messages than run around and around within from the past. Those messages that say you are hopeless, never amount to anything, dumb, naughty and lazy to name a few. I wonder if others who struggle to keep the focus on the things that will bring success and good things to life have those same kind of messages. It seems to me that they are pretty common messages for those of us that went through large parts of their lives as undiagnosed autistic.

I wonder…

But really shouldn’t you be writing that book?

Just Imagine

Just Imagine.

The month of April is in full swing and both negative and positive stories of autism abound. Unfortunately, the major ones and the ones that seem to get the most oxygen are the negative ones.

Stories of punctuated with words like suffering, epidemic, terrible, horrible, destruction and so forth abound in these negative stories and narrative.

This is not the story of Autism. In reality, the story of Autism is the story of humanity. It’s always been there with us. It will always be there with us. In short, it’s a part of the human condition. Not that I am saying everyone is a little bit autistic, heaven forbid I would utter such words. But it is part of the human condition because, in truth, we are always coming into contact with autistic people. This is true today, it was true in the past and it will be true in the future.

So the burning question is why is it we are so bent out of shape about it. Films are made, false research is done, lies are told all to try and demonise autism and autistic people.

But why, it’s always been there and always will be.

Whatever happened to treat all humans as humans. If that was the case then it would be possible then that all humans could find their unique place in the world, minus the labels of dysfunction and disorder.

Wouldn’t that be grand?

But no we are so ingrained in a pathologised model of human existence that, an unattainable for any single person, an ideal of normal exists. It really is unattainable because humans are human and all have their own foibles and idiosyncrasies. Or perhaps more simply we all are just individuals.

Just imagine though if we redrafted our world, our societies expectations, our educational philosophies our political landscape so that neurology just wasn’t that important.

Just imagine if we just treated each other as the unique and individual humans we are.

Just imagine, that person that needed the extra quiet in the workplace would be able to have it. That person that needed the ramp to get in and out would get it, that person in need of more back support would get that ergonomics assessment. And so it would go on.

Imagine that, a world that accommodated each other.

Imagine that, a world that accepted difference as difference and not something wrong.

Imagine a world where a true neurodiversity paradigm could exist.

We have a long way to go to ever get there, but I remain ever hopeful.

Unexpected but good things…

Discovery and then acceptance of being autistic was a real forward step for me in accepting myself as a person, and, in hindsight a real step to uncovering my repressed true gender and transness.

As I discovered that I was autistic so many things fell into space and I was able to make sense of so many things about my life and how they made sense now. This was a switch in outlook for me, because, whilst there was always an inner dialogue for me of feeling different and speaking that to myself there was also a sense of wrongness, badness, and uselessness at negotiating the world.

Diagnosis was like a light at the end of the tunnel, and it wasn’t the onncoming train at the other end.

Oh there was so much to learn, mistakes to make, other autistics to hurt and upset, for which I am truly ashamed and sorry about. But it was in a sense a moment of clarity. A moment where all the dots lined up and a line could be drawn easily connecting them together. Not as perfectly straight line but a line nonetheless.

First belief, then acceptance, then celebration and embracing of being different not less. Touchstone moments. Moments that meant something intensely important.

The years of school walking through a fog suddenly had some meaning and reasoning behind it.

The difficulty with friendships, social interactions, missing so many cues all of a sudden it wasn’t just failure it was neurology.

The intense stress when faced with a multiplicity of sound sources suddenly wasn’t weird but just the way I was.

The way I would attempt to create order and categorising, the way I would create little stims with my hands, though I didn’t know that’s what they were.

All of this suddenly made sense. It all had a reason. Actions had a purpose, and even the bullying, though i’m not in anyway excusing it, made sense because, you know, we humans are pretty horrible at accepting difference.

So Imagine my surprise when after coming out trans, starting hormone therapy and living in my true gender identity that suddenly a bunch of that stuff didn’t seem to have the same impact.

Being social is somehow easier — I mean even the desire to be social is hugely enhanced.

Being able to connect with my emotions and express empathy seems to be more accessible.

Communication doesn’t seem as fraught. And, I think that just maybe I might even be a bit better at picking up some of those cues that I always missed.

Clearly this is just one transwoman’s experience and idea. And of course there is no empirical evidence, just my feelings and insights about myself. I think they are valid, when it comes to myself. I wouldn’t think of expressing that these things will happen to any autistic person who comes out with their sexuality or gender divergence.

To say such a thing would be utterly presumptuous and the height of personal arrogance.

On the upside though, I am left with a sense of feeling better about myself, more positive about negotiating the world and connecting with other humans. It’s a somewhat strange but wonderful feeling.

I am left wondering though. What I wonder is whether this is a result of hormonal change or just a result of self realisation and actualisations .

Is it that aspects being autistic were heightened or more intense due to a hormonal wrongness which are being adjusted as my hormonal balance becomes what it should be?

Or is it more about the reality of coming out, owning my true self, living my true self and transitioning, enabled some kind of change in intensity of autism stuff.

I am left wondering I don’t have an answer really, or even a real theory about it. But would I do know is that it is a surprise to me.

A wonderful unexpected surprise.

It’s not that I am less autistic, it’s just that how my autistic life interacts with the world and the people in it is a little bit different to how it was.

It is unexpected but good I think!

But those memories…

But those memories, you know the ones, you can find them, we all have them don’t we? somewhere, they are there. You know the ones, the memories that show childhood was idyllic, fun and carefree. That’s childhood isn’t it. Isn’t that how we all experienced it? Sure it is.

But those memories, they aren’t the whole story, they aren’t even a bit of the story really. There is so much more to it, they are embedded with meaning that is incredibly potent and strong and impact and effect everything.

We all know the story, childhood is carefree. Childhood is full of fun and games and happily ever afters. It’s full of great family moments, togetherness. It’s all Beaver Cleaver, My Three Sons, Family Ties and Different Strokes or the Brady Bunch. Families where parents were rational, caring and listening. Friends that, sure, had their difference but in the end they worked them out and friendships prevailed; you know like when Peter Brady took on the Bully or when Jan Brady had to get braces on her teeth.

But those memories. Life is not Kevin and Winny and the fucking wonder years though.

I can’t deny it, I did have fun times, times of playing with friends and even family times that weren’t totally shit. I can’t deny that fact. It happened. Hours of cricket was played on the driveway. Bike riding around the suburbs with neighbours and friends, and even camping trips and trips to the beach that really were filled with joy.

But those memories. They don’t exist in isolation. They just don’t. It’s just not possible to remember those memories without the shit also rising up and being remembered.

And I am sure we all had some shit go down too. It’s just completely untenable that anyone truly had an idyllic childhood that didn’t include some shit. Some irredeemable lost friendships, some deep hurt from family. To pretend that anyone walked through childhood into adulthood without any shit sticking is just some kind of misplaced belief.

But those memories. Yeah, that shit, it is a lot more thickly planted on to the memories for some of us.

For some of us, almost every moment is layered with some form of disappointment, sadness, hurt and pain. I say this, not to be all, you know, woe is me, but just to try and highlight that it really is different for some of us.

My father was and remains, to my knowledge, a horrible man. My Mother, began as a gentle young woman, but somehow, became a hardened nasty person after living with my father for a while. That’s not to say they didn’t ensure I was fed and clothed and so forth. Yes, I received those basic needs. I even grew up with a pretty reasonable level of privilege you know. I am a white person in a country in the beginnings of shaking off the racist White Australia Policy. You know, we had the house in the suburbs, we had most of the toys and gadgets that supplied a level of social and economic privilege.

That was the surface of course. I existed in my home in a sense of living life dodging the bullets. I lived that childhood as a undiagnosed autistic repressed transgirl. And you know what it was more than a little bit shit. Parenting in my home was an act of enforcing the parents iron will in whatever way was necessary. Whatever that included was perfectly acceptable. Statements like “because I’m the mum, that’s why” were potent with meaning that implied disagree and you will pay a high price. On my right knuckle I bare a small scar from one of these moments. Religious statements like”spare the rod and spoil the child” were used as justifications for physical punishments that were nothing short of physical abuse.

Those memories but. Yes I remember childhood. I had some great times. I suspect we all did. Those memories though, will always be potent, they will always be seared with other memories.

That of course is true for all of us. For me they are seared with emotional, physical, verbal and sexual abuse. I can’t get pretend that is not the case, it just is.

But those memories. Yes, it would be wonderful if calls to a golden age of childhood as the best years of our lives was a fair call. But for some it’s a call to not the best but the worst years of our lives.

But those memories…

The Lucky Country says…

Australia, the lucky country, as it is known. The place of the fair go. Maybe that’s what it used to be like but it sure as hell isn’t anymore. It’s become a place of pain, a place of discrimination, a place of kicking people in the guts when they’re already down for the count.

Growing up I was always proudly Australian, I would go and watch my beloved Aussies in varied sporting pursuits. I would cheer loudly as we punched above our weight in international competition. I was proud that we were an accepting and accommodating place for people down on their luck, for people escaping from traumatic experiences. But I can’t be like that anymore. This place has changed. Hopefully not for good, but currently it has.

In a sense I shouldn’t complain too much, you know, I live in one of the best social democracies there are in the world. We have pretty much universal health care, we have safety nets for those who can’t find work and so forth. On the surface, this is all very good. It places this nation in the desirable market, I suppose.

But. Heaven help you if you actually need that safety net and need to survive. Because you’re basically fucked if you do.

Our nation has shifted further and further right on a lot of issues in the past few decades. It is devastating to witness. People fleeing torture are demonised. The unemployed and the disabled used as tools of a right wing media. Our previous national Treasurer labelled us leaners not lifters, along with this, he argued that a petrol tax was irrelevant to us, because, you know, the poor don’t have cars.

It shouldn’t be this way. But it is this way. I find myself stuck in a whole that is only partly of my making. It’s a hole I can’t seem to emerge from. I can’t find a ladder, I can’t find a friendly helping hand, I can’t find even some makeshift foot and hand holds to scramble up and out.

You see I don’t qualify for a disability pension. Because my recognised disability Autism is not considered disabling enough to qualify. The alternative is to be on a benefit called Newstart. The name in itself is an insult. On this benefit Newstart one is expected to house, feed, clothe and care for oneself on about $350 a week. It is essentially impossible. It is by design a system that doesn’t pay enough to survive on because the government don’t want you to survive on it, they want you to get a job.

Great idea that, get a job, right, when already there is something like 7 unemployed people for every vacancy. So it’s not just that simple. Of course throw in to the mix that as an Austistic person you are asking for some accomodations to be made in order for you to perform the best you can for the employer.

Generally you won’t even get a look in.

It just appears that this so-called lucky country has turned a corner, a corner that says basically fuck you, you can go on the trash heap.

But this is a serious issue. Autistic people are not rare, there are lots of us. The very small rate of 35% of us have employment, that’s any employment, not full time employment just any employment.

If I try to take a hard look at myself and work it out, I am utterly flumoxed. I should be quite employable.

I’m:

Articulate
Literate
Educated (2 Bachelor Degrees and an IT Diploma)
Numerate

These things should add up to employable. But alas no, it’s not for want of trying.

Oh I’ve had jobs over the years, I’ve had a wide range of them, I’ve even been damn good at them to. I’ve operated switchboards, I’ve linemarked roads, I’ve been a surveyors assistant, I’ve been a labourer, a Primary School teacher, an office manager, a warehouse worker and a production supervisor. And most of them I’ve done pretty well.

But, here’s the thing, they always turn to shit. And they don’t turn to shit because I can’t do the job either. They turn to shit for some social reason, for some sensory reason, for something to do with executive function.

The longest single position I ever held was just over 2 years. I was very successful in my position. I worked bloody hard, bloody long hours and poured my heart and my soul into doing a good job.

What happened, autism happened. And that is not to say it’s Autism’s fault or even bad, it’s to say that the lack of understanding of what was going on by employer, and even myself at the time was what happened. If I had been able to recognise that I was in some kind of shutdown/meltdown situation, if I have been able to disclose to my employer my diagnosis, and if they had been accomodating, then perhaps it wouldn’t have ended as it did.

That particular job was my last real position, it was the last fulltime job I held. I was terminated from that position in late February 2013. As I write this it’s mid-March 2017, and currently I have zero prospects of anything turning up.

It’s not like I will only take a high paying position, or want to start at the top either. I have applied for supermarket checkout positions, customer service, pretty much anything really. And I’m capable, but no nothing doing.

As well I’ve tried to improve myself with courses, I completed a website development course. I can confidently build you a website or webapplication using a range of web technologies, but no dice there either.

I’ve got to the point, where, as I have become true to myself and come out as the transgender woman who I am, that the culmination of all this employment stuff, now intersects with the reality that I have also lost my marriage and have ended up living alone, in a two room bungalow/granny flat. I don’t even have a kitchenette.

All of this culminates in me negotiating my gender transition fighting like tooth and nail against discrimination that goes with that coupled with a declining mental health. I have been put under the care of a psychiatrist for the first time in 2o years, not that that is a bad thing in itself, but is a sign that I am simply not coping very well. My depression and anxiety are at levels worse than I ever recall them being.

Each morning along with my gender therapy meds I add-on pills to help me function through the day without spiralling into a severe anxiety or depressive state of non-functioning, and then in the evening a regime of pills to combat the severe insomnia.

But in the eyes of my goverment, I’m a leaner not a lifter. I’m a blight on the welfare state bleeding the government coffers dry. And in this state I am I am required to have applied for at 10 jobs a fortnight and attend various meetings with job service providers. Those providers are paid by the goverment to supposedly support me to find employment.

An meeting at a provider goes pretty much like: arrive and get ticked off, be asked if you’ve looked for work, told to keep looking, a piece of paper printed off and a handshake and a good bye and good luck. For this service these providers are paid by government.

At times I’ve asked if there is more they can do to assist. Oh if you were considered less employable, but you have degrees, you’re considered highly employable.

And so it goes.

Just this last couple of weeks my depression and anxiety levels have prompted my doctor to provide a doctors certificate to exempt me from these requirements. After submission of such I recieve a letter saying I need to have an interview about my job search plan.

It seems in the world of The Lucky Country, it doesn’t matter anymore if you need a helping hand. The only thing you’ll get from this lucky country now is great big Fuck You!

It’s not just the shame, it’s more pervasive than that.

Shame is pervasive there is no doubt in my mind of that fact. Once one is subjected to it enough, it becomes a part of one’s self in a way and insinuates itself into just about all parts of one’s life. I’ve just read this post by fellow blogger Penni and it has sparked something in my thinking.

In unpacking all the ways I don’t measure up to the so-called Gold, Silver or Bronze standard of how to negotiate life, I mean shit, at times I can’t even manage the participation standard, let alone the gold, silver or bronze ideals.

You know you’re supposed to grow up, get married have kids, work hard, be successful in your job, be a role model to your kids and so on, and so forth. I’ve managed to make a pretty good fuck up of a lot of that.

I’ve grown up, yeah, in a state of denial of my true self for the most of it.

I’ve got married, twice, failed twice.

I’ve got kids, but I feel so much that I have just failed them time and again. I feel I have never been able to provide for them like I should, to ensure they have the material things they need. I certainly feel intensely I have failed to be a good role model to them.

In terms of employment, well yeah, here I sit, pretty much unemployed, again, about to turn 47 years old and no evident career history, no evident career path even.

The shame of all this is pervasive. It has me in tears much of the time, it is so deeply entrenched within me, that it seems impossible to shift it, to reframe it, to change it.

I think this just might be common for many autistics around my age. There just wasn’t enough known about autism when I was a child. I think my upbringing played a huge part too. Both my parents were very authoritarian. I had to hide away my true self in order to survive. Life was very much because I said so, and if you don’t here’s a beating to make you do it.

On just about a daily basis, and often multiple times a day I heard the line “you should be ashamed of yourself” It was used for so many things. Mistakes, behaviour, failures, whatever it was I had apparently done that was not acceptable, or not to the required standard.

And so that shame really did become internalised and pervasive.

I think it manifests itself in virtually every area of life. It slithers its insidious nastiness through every conversation, interaction, activity, thought process and feeling that you have.

Not good enough, not smart enough, wrong, mean, unkind, useless and so on and so forth. It’s an action of an evil of the worst kind.

I suspect that there must be an intense connection between this and my seemingly weak grasp on my own mental health. I am absolutely positive that this shame factor was a massive part of the almost absolute repression of my gender identity was for 45 years. Absolutely no doubt at all of that fact. The rough, tough, violent lessons learned as a young child were served with lashings of shame at even beginning to explore that aspect of identity as a young child.

The impact of all this is unavoidable. It is almost impossible to shift it. Wherever I go, whenever I talk, write, do a thing, it is laced with shame. It means it impacts my life pervasively.

It works itself through everything.

Find a job you could apply for — no you’re not good enough, they wouldn’t want you, you’re a failure remember.

Actually, apply for the job — shamefully frozen at interview stage, can’t begin to extol you’re worth as you are overwhelmed by the shameful messages you are hearing invading your conscious.

Interaction socially — oh you didn’t say that did you, they’ll all be laughing at you now, that look that was a look of disgust at you.

And so it goes on.

Regular readers will know, I’m in the process of transition. In grasping hold of my true self, affirming the truth of who I am, I have encountered a difficult cost. I have lost my relationship with my wife. I have had to move out of the family home, and find a new home. This is a huge cost, but a cost that must be paid. The reality of this cost is like an onion skin, each time you think you’ve come to terms with it a new layer of cost becomes evident.

It hurts. A lot. This last week I have had to come to terms with relinquishing being the prime carer for my disabled daughter. I have had to realise that I can’t do that effectively from a different residence. I am thankful one of my other daughters is able to fill some of that void. But the reality is, I can’t do it, I can’t do it financially, I can’t do be there for her all the time she needs me to be. The carers pension I relied on to do it is no longer available to me, and I am required to now find employment. Well if I don’t I will have no ability to be meet any of my financial obligations.

It hurts. It hurts like hell. I’m in the midst of that pain, and insidious shame that again slithers through telling me I am again a failure, useless, not worth it.

The shame factor of this is magnified when I begin to imagine the task of re-entering the workforce.

I should be employable, I should be highly employable:

2 Bachelor Degrees and a Diploma. Intelligent, highly literate, numerate and so forth. And yet. I find it extremely difficult to negotiate this whole thing.

And then there is the intersectional side of it all. Here I am as a medically transitioning transgender autistic woman in her mid to late forties. There’s a fair bit going on in that statement.

Then there’s the shame factor that goes with the reality of a spotty, sporadic work history, no long term jobs held ever. The barriers to successfully negotiating the social and communication aspects of finding work.

The task of even re-imagining my Resumè into a current and appropriate format is seemingly insurmountable.

The task of working out what are the jobs I can apply for, what the stated requirements and so forth actually mean and what they don’t actually mean is a confusing maze I can’t seem to find a way through.

I can do lots of things, but actually finding a way of matching my skills to an actual job seems an impossible task and sends me into the swirling abyss of shame.

I feel my mental health failing. I feel my ability to function becoming more and more tenuous as shutdown appears to loom with a sense of inevitability.

I want to work, I want to commit to an employer and do my very best for them. I want to meaningfully contribute towards the greater good for society. It’s just that the obstacles seem to be insurmountable and immovable.

Shame is a great debilitating force. This couple with the lack of services supporting those autistics deemed to be “high functioning” is a compounding factor.

I don’t know where to turn. The tunnel seems interminably dark. The light at the end of it has been snuffed out and there seems no possibility of it being reignited.

I need help, and I am sure I am not the only one.

What a difference a year makes….

Blogger’s Note:

This is a re-write of a post from just over a year ago. My life has changed immensely in so many ways in since that time. In some respects, this post was an epitome of my self-repression of myself. Whilst the message of the post was and is relevant, I believe, it is full of myself making false empty claims about who I am.

It’s New Year’s Day and what better time to update a post that resonates with claims of myself that resonate with emptiness.

Privilege is as privilege does

Privilege, it’s a somewhat small word, and yet its very meaning is so deep. Those of us who are of the privileged groups often dismiss its depth of meaning without much second thought. It’s a time in history, I believe, where we have an opportunity to really assess just how deep into everything the roots of privilege go.

The dictionary tells us that privilege is:

a right, immunity, or benefit enjoyed only by a person beyond the advantages of most:

www.dictionary.com

And that certainly is true. Groups that lack privilege call on us to check our privilege before we wade into things. Before we try to be an ally. Before we try to present discourse on a debate. Before we pontificate our opinion on issues that are of real importance and justice to them. They do this because it needs to be done. And generally, if we a neglect to check privilege we are means being very darn good at tripping over it.

I for one have tripped on my privilege plenty of times.

I have quite a bit of privilege. Whether it feels that way to me or not it is true.

I still have quite a bit of privilege, even if it is less so.

Yes, I am a member of a marginalised group being an autistic man, and proudly I claim membership of this group. I encounter disadvantage as a member of this marginalised group. Being a part of this group means I encounter marginalisation, silencing, gas lighting, rejection and discrimination amongst other things. But….
I am also a member of a western social democracy

I am also a white (Caucasian)

I am also male

I am actually a trans* woman

I am also married

I am now separated.

I also have children.

These don’t counteract the fact that I am a member of a marginalised group but they are separate to it. They are things that assign privilege to me. Privilege that is difficult to understand. It is privilege that you can’t negate. There are special rights and entries that these things provide me that can’t be ignored or made redundant.

At this point I can sense the groans of fellow white males who may be thinking, here we go again with the anti-white anti-male sentiments. I confess, I have been one of those groaners, in the past, even if wrongly. But that’s not the point here. The point is that privilege is there no matter how I think or feel about it.

I will never be profiled as a potential criminal based on the pigment of my skin.

I will never have my intentions around children questioned based on my sexual orientation.

This is no longer true as a trans* woman sexually attracted to other women this will be regularly questioned.

I will never be in a situation of being unable to enter a public amenity due to a non-binary gender.

Each time I use a public restroom I have a fear of being outed as trans* and made to use the mens restroom and place myself in an unsafe situation.

I do not have to fight a legal battle to ensure the inheritance rights of my partner because of my sexual orientation.

I lost my partner in large part due to my sexual orientation. It’s complex but it’s true.

My fitness to parent will not be questioned.

My fitness to parent will be regularly questioned.

I will never ever have to face any of those issues. The reason is privilege. I need to check it.

I still need to check my privilege. I am still white, I still have a level of economic privilege.

Yes, I really do. Like it or not we all do. Because I will never know what it is like to walk the streets as a person of colour and worry about how I may be treated on that basis. I will never have to be concerned that I have no chance of justice because I will be prejudged on the basis of the colour of my skin. So yes. I need to check my privilege.

I need to do this intentionally. When I write about autism issues I write as a member of that marginalised group. When mothers of autistic children write about autism they do not. They are then in a position of needing to check their privilege.

If I were to choose to write about issues of mobility and access for those who rely on a wheelchair, I would need to check my privilege. I am not a member of that marginalised group. I have no concept what it is like to negotiate a shopping centre, or anything for that matter reliant on wheelchair transportation.

An important takeaway here and one that I have learned the hard way is that membership in one marginalised or disadvantaged group does not excuse one from checking their privilege in relation to other marginalised groups.

Does this mean we should not or can not speak into situations and issues that we have privilege in? No, not at all, but it does mean we defer to those that are without privilege. This applies in many areas. For instance, on the issue of marriage equality and equal rights to parenting for LGBTIQ people, I am entitled to speak what my opinion is on this issue, I am entitled to speak in support of justice around these issues. But, I must do so, with a clear understanding that I will never be on the issue, I will never have true empathy and understanding of the issues of justice and equality that the members of this group have. Turns out, in fact, that I do have, or am beginning to have empathy and understanding on this issue.

Yes. I must check my privilege and I must continue to do so.

As I have said I have learned this the hard way. I have hurt people I cared about by failing to check my privilege and being arrogant enough to believe that I was not operating from a position of privilege.

This above paragraph is interesting to read over and reflect on. As I was in a state or repressing my true identity, and presenting as a male I did for all intents and purposes have that privilege, and yet, I never truly felt a part of the male gender, I never felt truly a man, or truly able to be a part of that. That doesn’t deny that the privilege was there and that it wasn’t felt doesn’t change that it applied. And yet…

To move this post back to my world of experience, I would like to finish with the comment that I am convinced that this is the very issue that causes such angst and animosity between the so-called autism allies and autism parent community with the actually autistic community. When websites like The Mighty publish horrendous pieces like MeltDown Bingo as they recently did it is primarily because they failed to check their privilege. The Mighty claim to be a disability ally and yet they published such a horrendous piece.

It is a similar situation when we see autism parent bloggers and so-called warrior parents write about the difficulties of their autistic kids or post compromising photos or videos of their kids in their underwear and so forth. It is that they have failed to check their privilege. And when checked by actually autistic adults about some of those things, the failure to check that privilege is clear as often the response to this is something along the lines of it is my life and my right to publish what I like. Yes got it in one, it is your privilege that enables that, and it is your child’s lack thereof that leaves them incapable of stopping it from being published.

Yes, I must check my privilege and yes I must continue to do so.

One Autistic Christmas

An Autistic Christmas.

It was Christmas day lunch. There was no turkey, there was no glazed ham. no cranberry or apple sauce. The roast pork and chicken along with the crackling were all absent.

No party crackers. No silly jokes and hats. The chatter and giggles, the laughter of cousins, the sheer joy of being a part of something larger than oneself were all absent.

It was Christmas lunchtime and there was much potency present. The potency of exclusion, the potency of disconnection, the potency of deep pain and sadness, devastation and hurt were all making their presence felt.

Tears were there in abundance. They flowed down my face as the pain and disconnection came over me in waves across the afternoon. They were expressed in episodes of howling in sadness and devastatingly painful aloneness.

It was not a case of an episode of tears and cries and back on with life. Even now a couple of days later as I write these words those same tears begin again to come over me in a wave of renewed pain and sadness.

This Christmas has been for this autistic lady, an experience that has hurt me deeply, devastated me emotionally. It has seen me experience actions by another human I never thought them capable of.

You see my marriage is over. The relationship with my wife is over. Why it’s over is not really of consequence, what is significant here is that it is over. From a family Christmas point of view, that prompted my sister-in-law to express that I was not invited to attend the Christmas lunch she had planned at her home this year.

Ok, I kind of get that. I do.

But, the implications of this in my situation are devastating. You see I am a child of abusive parents, I have had no contact with those parents for around 20 years. My extended family are all interstate.

So, what this meant, was by not being unwelcome at the only family Christmas dinner I have known for many years, that, I had nowhere to go and no one to be with.

This small thing was devastating to me. Not only did I have nowhere to go or no one to be with all my children were still welcome to attend, even though. two of those three children are actually not blood relations to any of those at this lunch.

So it doesn’t make sense to me, that I am somehow cut off from the only family close to me either emotionally or geographically. The pain of being singled out in this way was, and remains intense.

Whilst it makes some sense that I would no longer be able to attend due to not being together with my partner anymore, it is a searing devastatingly painful reality.

I have pause for thought to consider the idea of autistics and emotions and empathy and all that business. It reminds me again of how the reality of this autistic shatters the stereotypes of what an autistic is like. You know, the idea that an autistic doesn’t have empathy, doesn’t have feelings. doesn’t care if they are alone or with people.

It’s certainly a thing that I am an introvert and derive my energy in time spent alone. It is certainly a thing that I have difficulty with socialising and reading the social setting and responding appropriately. It is certainly a thing that expressing appropriate empathy can be extremely difficult.

But, it’s not a thing that I desire to only be alone, it is not a thing that I don’t want to be with people ever, it is not a thing that I don’t desire and long for social connection, and sure as fuck is not a thing that I don’t feel empathy.

I can only speak for myself as an autistic, I can’t speak for other autistics but I certainly wonder if this is similar for other autistics. It seems to me that a common theme I see expressed by autistics is a longing and desire for a relationship with others. So surely I am not alone in this.

It seems someone ironic to me that I the autistic in the situation was able to articulate and express the depth of pain that was coming in the days leading up to Christmas, and yet this was dismissed by the neurotypical adult in the household.

What I experienced, as best as I can understand and convey it was a minimising of my emotional needs and feelings. The whole situation was dismissed as well it’s only lunch it’s really no big deal.

But it was and is a big deal. You see, Christmas lunch has always been a big deal for me and those I have shared my life with. It was a big deal and it is a big deal. It wasn’t and isn’t and never will be just lunch.

Yes, I did get to spend time with my children in the morning. Yes, I did see them in the evening. I don’t mean to minimise that situation, but just lunch was the bulk of the day, a day that holds potent meaning in the life narrative of my existence.

Just lunch was the bulk of the day, from midday until 6:30 PM. I don’t see how in any one’s mind that can be just lunch.

I feel somewhat that I am rambling on here and not making much sense. I suppose the thing I am trying to say is that just because one is autistic does not mean these things are meaningless and that the pain is not real. They do and it is.

In a sense, I guess, it is even more painful because it is one of those days, where, you know, there is a sense of putting differences aside, of putting in your very best, of showing your love and care for those you may generally not do so too. I guess, in that context the depth of pain is understandable.

No, it wasn’t just lunch at all. It was hours of intense loneliness, pain, abandonment and indescribable depth of hurt.

So what’s the point, well I guess the point doesn’t assume that just because they are autistic that it won’t really worry them. Because you know what, autistics have feelings too, just as real and, just as fragile as non-autistics do.

Yes, that’s right, we hurt too. Please take that into account as you arrange your lives around your autistic loved ones. We just might want to be included. Fancy that.

Oh Captain my Captain — Seize the Day

I have to say from the outset, I am not sure where this post is going. There is such a mix of rawness, pain, joy, excitement, sadness, and a bunch of other feelings coursing through me these recent times. And I imagine they will continue to do so for some time to come.

There’s a realisation I have come to in recent times, that one doesn’t just come out and be done with it. Life is much too complex for it to be like that. It’s far too nuanced for that to be the case. There are too much variance and change in life for that to be the case.

I thought I had had my big coming out when I came out publicly as autistic, then I thought it was when I came out as non-binary, and now it seems like I have had that big moment in coming out as a transgender woman.

So what’s going on here? I guess part of life is walking a journey, a process, a continuum of comings out. Those comings out can really be anything, they can be sexuality, they can be gender, they can be neurology. And there are so many other things they can be too.

One thing is for certain, though, whilst they can be, and so have for me personally, moments of wondrous clarity, honesty and self-determination, it is foolish to consider they are the infallible cathartic moments we expect them to be.

There is much to be gained from them for sure, but there is also incredible risk and at times incredible loss too. That loss can also be incredibly painful. It can be in a sense debilitating, life altering and so potent it can leave you in a state of not knowing where to from here.

But make no mistake, comings out are incredibly important, and in the long run, I believe cathartic and positive. They can, in fact, shape us as we go forward in our lives. They can be pivotal moments, they can show us just who our real family and friends are.

I think it’s true that a life with comings out present is a life well lived. It’s is a life beyond a mediocrity of just going through the motions of life. It is, I feel, a life that is examined, reflected on, known by its very life liver.

Being the age I am, I don’t think I ever would have been able to come out autistic if I had not been able to examine, to reflect and to consider my life, how it intersects with others and how it is in comparison to others. I would never have been able to begin to discover the truth of my gender if it had not been for this propensity to reflect, consider and investigate myself, my feelings, behaviours, my acting out of life if you like.

As I write here on a blog called Proud Autistic Living, there is no question that I am out and proud in terms of my neurology, I wouldn’t and couldn’t have it another way. But it does come with some difficulties. It comes with a reality that you can’t just put it back in the bottle. You can’t just suddenly take it all back and go back to trying to pretend to be like everyone else. It has ramifications when it comes to interacting with organisations, medical professionals, therapists, employers and so forth.

Coming out transgender has taken this to a whole new level. It has far-reaching impacts on the way I do everything. Undeniably this is a wonderful, freeing, and exciting process. It does though change everything. Family life is permanently altered, relationships are forever different. Family get-togethers are irreversibly changed. For me personally, this has meant that a marriage relationship is ending, living arrangements changed irrevocably. These are the parts that are hard. They are very hard. They bring tears to my eyes on an almost daily basis. But they are things that can’t be just put back. They are things that must be navigated.

Yes, they are damn hard. Really fucking hard.

What goes with this, though, is a life that is lighter, a sense of wellbeing that is happier. I can’t even begin to count the number of people who have commented to me about how this true in what they see in the way I look, the way I relate, the way I live.

The point of all this I guess is that a coming out is not all peaches and cream. But what life well lived is a life of the easy street. A life punctuated by comings out is a life that is, I believe, punctuated by periods of deep reflection and self-realisation. It is a life that is inherently true to itself. I believe that this is a life that is trying to be lived to the fullest. To be lived in such a way that it seeks in every way to carpe diem.

So I say, even in the pain, even in the hurt, and the unforeseen change, live a life that is punctuated by comings out and seizes the day and lives a life well lived.

I sense it is something akin to Mr Anderson of Dead Poets Society fame, making that move, with bravery and trepidation, climbing onto that school desk amidst the pompous Helton Academy and proclaiming to his teacher Mr Keating “Oh Captain, My Captain”.

I was 19 years old when I first saw that. It was amazingly potent then, and it remains so. Mr Anderson of course, displays great courage, he is after all the first of those boys to stand. But it matters not that Overstreet, Meeks, Pitts and others were after because in the end they looked deep into their very selves and they chose that moment to seize the day, to stand out, too, if you will, come out of themselves.

Oh, Captain My Captain!