When it’s not so terrible after all.

It’s Mother’s day here in Australia today. And well it’s one of those days that for years I have absolutely dreaded. It’s been a day of deeply mixed emotions for so many years. My relationship with my own mother was always one spotted with abuse and pain, and it always felt like I was playing some game of pretending she was the best human in the world when in reality, she really sucked.
I am not of course talking about a mother who just stuffs up sometimes, or tries and fails to support their kids in the way they need it. No, I’m talking about a mother who was my abuser, enabler of my abuser, and never able to take responsibility or acknowledge that anything she did when it came to parenting me was in error, ever.
This was a woman that beat me senseless in fits of rage, a woman who hit me so hard with wooden spoons that they broke over my naked bottom, a woman who would throw or shove me across rooms in unbridled rage and then proclaim statements like “now look what you’ve made me do”.
I bear a few small scars on my body as mementoes of the rage and temper with which this person executed their abuse on me. They serve as reminders of what it was like to live through, and, in some sense, momentoes of survival.
In my teenage years and early adulthood, my mother wore a jumper with the words “because I’m the mum, that’s why”, it pictured two bears an adult bear and a child bear. I am sure its creator could not have envisioned that such a thing would be a reminder of trauma, and a reinforcement that I could never, whilst in any kind of relationship with the wearer, have any true autonomy over myself.
So, when Mothers day comes around each year, my psyche, has that to deal with. Of course, it’s not just as simple as that. And for reasons of my own safety, security and autonomy I went No Contact with this woman quite some years ago. It was an important thing to do, no matter how I longed, how I hoped and prayed, or how I desired, it became clear that this woman, would always remain a toxic and dangerous influence as long as they were involved in my life.
Of course, each year, I get a twinge of longing, I guess that’s to be expected.
Throughout all my adult years, well, since the age of 24 when my eldest child was born, the day has had more meaning than just the awful horrid shit that was my relationship with my mother. It had another side to it. A side that was always hopeful somehow redeeming the day.
I suppose you could say there were some years where it was more successful and others. As a late to transition trans woman, I am sure there are complexities in all of that still to be considered and reflected on, but for every year until this year, I was not the mother, I was playing the role of the Father, how that ends up being interpreted and so on is an ongoing journey of course, but needless to say, as a parent to my kids, for the majority of years, my ideal, has been to focus not on the horror of my mother but on making a nice and good day for my children’s mother.
The complexity is deeper too as I have three kids through two women. Over the 24 years of being a parent, for the most part, has been a desire to make a great day for the mothers of my kids. A few years ago that changed somewhat when the mother of my youngest became effectively the only real mother my elder kids could rely on, as their mother abandoned them in favour of a horribly abusive man.
But, I just wanted the day to be a good day for their mum. I don’t really know how well I did in the endeavour of doing this. It was always, it seemed to me at any rate, a dismal failure because the pain of my own experiences just got in the way and wrecked everything for everyone.
This year, it’s been different. Unexpectedly different in an emotional sense. Whilst I am a woman, I have not really been in the role of mother to my kids. How that will be in years to come, is, I suppose, an open question, but to this point, even as it seems they accept me as I transition, the thinking of me, treating me and experience of me is not a motherhood one.
Honestly, I wasn’t sure what to expect at all. I made a choice, sort of a conscious one, and sort of not so much, that I just wouldn’t make much of the day. I texted my older kids, to make sure they were doing something for my ex-partner, they confirmed it. And pretty much left it at that.
I made a choice to just let it be like any other day. And you know what, it’s kind of turned out that way too. I did send a text message to my ex to wish them a happy mother’s day, and then I left it at that. I spent the day at church and lunching with friends. And, I am genuinely surprised, that it has pretty much been a not so bad day after all.
It’s even had some nice bits where at church they gave all parents a gift. I go to an LGBTQIA+ affirming church and am not the only trans or gender divergent member, and so it was a nice caring touch. Well, I have touched anyway.
Without a shadow of a doubt, this has to be the first mothers day I can remember that hasn’t been an abysmal horrible day. There have been years when it’s been due to me stuffing it up, not just for me but the mothers of my kids, there have been years where it’s been horrid simply from trying to pretend my mother was not the monster that she is. There have been years that have been something of both.
So this year, it’s turned out to be a not so bad day after all. And I even got a text back from my ex-partner thanking me for the message and informing me of how our youngest child had gotten her a whoopee cushion as a gift.
I do hope this is the beginning of a new era of mothers days that are not such bad days after all.
And to all, you mums out there that really do, do your very best, pour yourself out each day, go the extra mile and love with never ending passion your kids. To you, I wish a happy and blessed Mothers Day.
And to all those like me who’ve had to remove themselves from relationship with their mothers or who’ve lost their kids, or through some other twist of fate, find this day a hard one, to you I express warm loving hugs and kindness and hope you too, have been able to have a day that’s not too bad after all too.

No, no and no again…

Conclusions: Results suggest that ASD presents unique challenges to the formation and consolidation of gender identity. It is important that clinicians working with ASD are aware of the gender-diversity in this population, so that the necessary support for healthy socio-sexual functioning and mental well-being is provided. – https://imfar.confex.com/imfar/2017/webprogram/Paper23478.html

This abominable quotation above, from the abstract of a paper presented at the IMFAR conference. It’s abominable when you realise that the assumptions made here are all from a cis normative narrative.

The bulk of the abstract presents a bunch of facts and statistics about the sample of people both Autistic and non-Autistic. Prevalent throughout the use of the term gender dysphoria is used in a pathologised sense, as though it is the only measure of gender identity formation in people.

The gender divergent community know this is a complete fiction. But besides that, I take strong issue with the statement that we autistic people have unique challenges in forming our gender identity.

I would posit that in fact every single human being has unique challenges in forming their gender identity. That’s because we are human, and each one of us is unique and therefore our challenges, especially in relation to something so integral to who we are is of course unique.

This abstract, is in itself a steaming pile of shite when it comes to actual useful research for autistic people, because it begins and ends from a pathology paradigm. The language, the tone, everything in it comes from a starting point of Autism = Bad.

I wonder if they ever stopped to wonder that, perhaps, we autistic people, actually have less challenge in forming our gender identity, but face significant challenge in how that is accepted by those neurotypical people we are surrounded by.

Yes, research definitely seems to be bearing out the fact that there are more gender divergent people who are neurodivergent than neurotypical. The big question behind this of course, is it really that way or is it really that, actually autistic people are just less constrained by the social cis normativity pushed so strongly in society and therefore more likely to actually explore and discover where they actually fit in the huge spectrum of gender identity.

Do the statistics that show this higher prevalence actually bear out truth or are these numbers much more closely matched, but many neurotypical people are less likely to be honest and acknowledge a divergence from cisnormativity.

These are I suppose open questions, however, I suspect that the actual numbers of gender divergence in the neurodivergent community and the neurotypical community are closer than we think. I suspect we will not be able to truthfully get reasonable data on this question as long as we continue to pathologise gender divergence.

For as long as trans people have to fight for equality, the openness to admit to such a divergence is likely to be less forthcoming, even in an anonymous research situation.

This is confounded by having research that comes at the question of gender identity by asking about gender dysphoria, which is not something that is a prerequisite for alternative gender identities at any rate. Yes it is true that many of us experience dysphoria, but it is not a given, or a prerequisite in any way.

As long as language continues to be used in this way, findings presented in this way, continued gatekeeping of reasonable access to appropriate gender health services will continue. Furthermore they will continue to be enforced with greater stringency on the neurodivergent community as they seek to pathologise our identity and our dysphoria, not as a genuine expression of ourselves, but as our latest special interest, our latest obsession, something we will just get bored with in a few months until we find something else to be interested or obsessed with.

Until society changes from tolerating us to accepting us as just another part of the fabric of what makes up the diverse human population, we will continue to have to fight for equal rights, equal healthcare and so forth.

It’s time to stop considering that a gender divergence is something negative, wrong, mental illness and what not and accept it as a normal variant of the human condition.

Oh and of course, involving actually autistic, and actually gender divergent folks in the actual production of research. Not as subjects to be researched but as colleagues with which to collaborate and enhance what can be learned.

Lives derailed… by the fiction of functioning labels.

Yesterday, I was doing great, I was writing up a storm before lunch I had managed to punch out a couple of thousand words of writing stuff in my long piece, I am working on.

I was completely derailed. A text message. The content of the message was not so important as the realisation of the vitriol, transphobia and dislike for the person I was.

It totally derailed me.

I was left, with tears rolling down my cheeks, my contacts falling out as a result, in the middle of a local cafe.

Whilst what occurred was something that would be highly upsetting to anyone, I’m not so sure it would be derailing to everyone. As an autistic person who relies on predictability, routine, and so forth it was more than just the pain of the content, it was a deeper impact in my ability to function at any competent level for the remainder of the day.

And that’s kind of the thing with functioning and neuro divergent folks, our functioning fluctuates, week to week, month to month, moment to moment, and in this case second to second.

Oftentimes, actually autistic voices are quieted, silenced and erased with the claim of being too high functioning to understand their low functioning child. To start with functioning labels are just ridiculous in the extreme.

I mean in practicality, an autistic child is assumed to be either high functioning or low functioning by the masses on the basis of whether they can speak.

I and others have been declared high functioning because we an type, as though because we can type we must be high functioning and be able to speak. It’s basically a pile of steaming shit, but it is what we deal with when talking with parent groups in the autism world.

The whole argument of high and low functioning should really be dismissed by the simple fact that there is no such diagnosis as High Functioning or Low Functioning Autism. It is a fiction.

The very fact that it is a fiction should shut it down right there and then, but unfortunately, clinicians and diagnosticians and autism charities use the labels as if they are actual real diagnoses.

I know Autistics who even have it printed on their diagnosis reports. But it is still just a fiction.

Clinicians, therapists, and so on, seem to have come up with the high functioning label, mainly I suspect to try to soften the blow, for the parents receiving the diagnosis of autism for their child. I kind of get it, but making up things that don’t exist to make people feel better when acting in a professional capacity is surely, at best, poor form, and bordering, I would say, on malpractice.

Not only is it a fiction in terms of not being a real diagnosis, it’s a fiction and a total misunderstanding about how autitic people live out their lives.

Like stated functioning fluctuates a lot, it can change in the blink of an eye. It can change in many ways, it could be loss of speech for a period of time. It could be just losing agency and capacity to get up and move. It could be a reduction in executive functioning capacity.

For me yesterday, it was a bit of all of those things. I could easily have been described in those moments as low functioning, because I was.

And there’s the rub, it’s not a set thing, which is a very real reason not to define people by a functioning label that could be something only evident and applicable in a moment.

The other side of this whole debacle is that people labelled low functioning are considered having nothing to offer. They are often given the label on the basis of their ability to communicate with their mouth parts. Anyone who has ever considered communication in even the most cursory way would be able to tell you that communication is not simply our ability to flap our lips and have understandable words come out. It is far more complex than that.

Worse than this is that they are often effectively lumped with a belief about them that they are not capable of anything, don’t have any voice and therefore they lose agency over their lives.

And that’s the rub. They are derailed. Not just for a moment, an afternoon, a day or even a week. They are derailed for years, often their whole lifetimes. Their agency over their life is tightly controlled by others, be it parents, institutions, or the state.

It’s been said, often, by more than a few autistic peeps, that functioning labels hurt us. They really do. And a key way they do that is in having control over our lives and support to make lives that are fulfilling and the best they can be.

Those of us labelle Low Functioning are considered too low functioning to achieve anything, and so supports are often not about making a good life for us, but about making life easier for our caregivers.

Those of us labelled High Functining, well, basically, we are considered too high functioning to obtain any help and support.

Functioning labels, no matter whether they are high or low derail us and steal agency and fulfilment from our lives.

It’s time to stop the fiction of functioning labels when referring to autistic people.

What to do?

Sometimes it really is just super hard to know what to do. What options to take, what to respond to, how to respond, when to respond. Life is confusing. It really is.

Coming out transgender and then transition, of course, throws a wheelbarrow shit full of complexity on where to go from here. Well it certainly has in my case.

By the time I was unable to repress and deny the truth of my gender identity, I had travelled 40 plus years of life. I guess I was a slow to realise, or just dam good at pretending it wasn’t real. Those 40 years of life mean I had accumulated a fair bit of accumulated stuff. Important stuff and not important stuff, and some stuff that to live without would be devastating.

I really love seeing the stories where relationships could weather the turmoil and complexity of a coming out and transition. I love to see how those relationships were strong enough, where love was love, and love was strong enough to get through the rocky ground and make it through.

Unfortunately, for every one of these stories there is a story of a relationship that failed. Of pain on both sides, of loss on both sides. I wish it weren’t that way but that’s the way it is.

For transgender people, it is a massive risk coming out. It is a fundamental mind shift for their families and loved ones to make, and, unfortunately many families won’t deal with it, instead they run away and hide, or push the person away.

I have friends who lost everything. Especially the biggest loss, the people. Sometimes they come back in time, but it’s a huge thing, for some it’s really fucking nasty, for some it’s civil. But in the end it amounts to the same. A huge loss. A massive pile of pain that sits like a massive knot in the core of your soul.

My personal story is one of those that didn’t work out like the fairy tale. I lost all that family connection over a long period of time. My immediate family were nasty, I cut off any contact with them a long time ago and it was in a sense relief, but it’s still a loss.

My relationship with my partner, I thought, hoped, dreamed I guess, that it would survive. I thought that we would have a tough rocky road but that we would in fact manage to be one of those stories that weathered the storm. It was not to be.

My former partner, characterised this as one day I had a husband and then I didn’t. For me the story is somewhat different. For me, I wanted it to work, I felt we tried to talk, and we did, in a variety of mediums, face to face and text based discussions. But in the end, it was definitively her choice to say she couldn’t do it.

There could sure be much too and fro about the details. I am sure I fucked it up royally in many ways. I don’t deny that, but I can’t abide a pretence that one day I was a partner and the next I wasn’t. Well I guess it is true in actuality, but it was not true by my choice.

The really messy stuff happens from there. The dissolution of a relationship partnership is one thing. The working it out from there is the hard thing. It’s messy and confusing, for all parties involved.

My former partner, in many ways, respects my pronouns, my new name and so on. She states she would like to remain friends. She even describes our relationship as friendly. I simply can’t characterise it in such a way. Civil, perhaps, but friendly not so much.

I don’t want to go in to a litany of mistakes and wrongdoings on either my side of the equation or theirs. It remains a reality though, that what we have, can’t at this time be called a friendship. It hurts like fuck to say it, but it is the truth.

Maybe one day, maybe sometime in the future, a friendship can be salvaged from the pain and hurt on both sides. It’s hard to see it at this point. I do hope it does. It’s hard, though, to move past some things. I don’t know whether I can or not.

The question of what to do, how to handle things, and so on is a hard one. There are the mutual friends of course that choose to support both people in such a situation, and that’s a wonderful, if sometimes hard to navigate thing. There are social media connections that you kind of think need to be maintained in order to maintain a connection with children and communication.

Those connections though, sometimes, get used as a forum to air grievances for all the world to see.

What I am pretty sure of, is if you maintain those social media connections for those purposes of communicating about household stuff, what you don’t do is go shitting on each other’s posts.

Pretty sure that’s a thing you don’t do. Pretty sure what you should do is just scroll on past.

I had a brother and then I didn’t…

Yes, you read that right, I had a brother, and then I didn’t. He didn’t die. He didn’t cease to exist. He still exists. We still even talk to each other from time to time. We disagree on a lot, we are probably as far apart as two can get on ideas about politics and the economy.

But for a little while, about four decades ago now, I had a brother. I’m not sure exactly how long I had that brother. I’m not sure because I was about 4 years old at the time.

My brother, well he was, and I suppose always remains about 7 or 8 months older than me.

I have pretty sketchy memories of our times as brothers. Mostly those memories were of two little siblings getting up to mischief together. At the time, my parents, owned and ran this great big guest house in the Blue Mountains west Sydney, Australia. So there were lots of places we could get up to mischief. Lots of hiding places, lots of knocks and crannies to sit together and just be siblings.

I remember so clearly the day he went off to his first day of school. It felt like a ripping away of something. I just wanted to be with him, I wanted to continue our times of play and joy together. But it was as if they were being ripped away.

That’s almost my last memory of him as sibling. It’s a tough one, but not as tough as the very final ones I had. The final ones were devastating. So devastating, they resulted in me going so far into myself I have virtually no memories of life during that time.

I know, that as a five year old kid, I started having bad nightmares, I apparently began wetting the bed, which remained an issue for several years. I became convinced, apparently that I too would be sent away.

How I know this, is through a letter, my grandfather sent to my father shortly before he died. I was about 14 at the time, and that letter detailed some things, gave a little clarity to me about some of what happened and some of the stuff about how it was that I had a brother and then I didn’t.

My final memory of my brother as a brother, was standing at the doors of the Anglican Children Homes in Carlingford, Sydney. We had all, my parents, my older sister, me and my brother, gone for a drive, what seemed like a long drive. It was probably about a two hour drive.

We arrived at this childrens’ home, what was going on was very unclear, even now it’s fuzzy. I don’t have a recollection of the drive, I don’t have a recollection of the conversations that were had. Just one sentence.

One little snatch is the only enduring memory of that deeply traumatic moment. Your brother is going on a holiday. And from conversations had since then I know that was what my brother was told too.

standing in front of this big two story red brick building, at a white double doorway, my brother was bustled through and then, at that moment, he apparently ceased to be my brother.

Home we all travelled, told we were just four again and not five.

It transpired that on our return home my mother phoned her mother to explain the situation. My grandmother, was an amazing woman, who cared deeply for many children across her life, be they her own or others, was as you can imagine absolutely outraged.

My grandparents, that next day drove to the childrens home and collected my brother. They took him in, they loved him, cared for him, and eventually they adopted him.

My brother had become my uncle. And in a sense this was perhaps my salvation, my ability to go on in life, to negotiate my way through being a kid and living in the horrendous family I lived in.

I only discovered in the last decade or so, that in the aftermath of my parents dumping my brother, and my grandparents transforming him to become my uncle, my parents, for a period of a year refused to speak or have any contact with my grandparents.

There argument for this was apparently it would be too traumatic for me to deal with. I pretty much have no words about that reasoning except for What The Actual Fuck.

In the time line of my memory, which I no now, is actually really fragmented at that period. We drove from where we dropped my brother directly to my grandparents house. We all came in the door, the front door, which in itself was odd, because we never ever entered that way before or after.

I heard a familiar voice from the end of the long corridor near the kitchen, I saw a familiar face and there was my brother. Somehow this was for me a celebratory moment. I recall it being a moment of intense joy.

I’m not sure what I thought it meant at the time. I do know this though, my brother, the person who had been closest to me that had been ripped away to essentially not exist, did exist, was alive and standing right in front of me.

I suspect I thought this was the end of the so-called holiday and we would all go home together again. Of course, that was not the case at all, and again at the end of that day I would have to say good bye again to the person I had this intense and close and somehow unbreakable connection to.

I had a brother and then still I didn’t

But I had him, in a small way I had him. And in small ways I still do. We don’t talk much. As we’ve grown up, we have had periods of closeness. As teenagers we would talk on the phone quite regularly, we would go see movies together.

Throughout the years during school holidays I would be able to stay at my grandparents and we would get up to mischief together all over again. I recall as 13 years old we took ourselves off to the movies together to see Tom Cruise in Risky Business, and in that same period of Holidays Henry Winkler in Night Shift.

I’m sure you can imagine the unimpressed reaction we got from my grand mother when she discovered it.

This brother I had and then didn’t, well I think, at some primal level deep inside myself, I still see him as a brother. I am pretty sure he doesn’t see it in the same way, and yet still he, I believe, has a connection to me.

Growing up I would describe us as cousins, he would always say he was my uncle. It was just the way we did things. I think it was just him asserting his eldership, and, I think, in a way, seperatness from the disgusting horror that are my parents.

If you remember, early in this piece I spoke of how different we were politically and so on. When I began to transition, he was actually pretty rude. He referred to me as doing a “Bruce Jenner”. It hurt.

It hurt a lot, but I felt I had to block him on social media, which in a sense meant cutting him out of life. We live about 1000km away from each other these days so it’s rare we catch up face to face. It felt like cutting a thread of connection that was the strongest and longest. Perhaps the most dear of all threads of connection I ever had.

Time ensued, I began a new account, on social media and one day I received a friend request and a message asking to reconnect. I recieved an apology and a statement that he remained always interested in me and my life.

I was surprised and pleased. I think it spoke deeply to me, that even though he may not understand what it was for me to be me, he still had some faith left in the strand of connection that was forged and woven as we as little kids played together in that big old guest house. As we joined together in protecting each other as best as little kids could from the danger of my parents.

I suppose at the end of all this, is a sense, that, no matter how I have verbalised and articulated this relationship, over the last 40 odd years it has existed. Deep within me, has been the feeling, the belief and the desire, that he remained my brother.

One day I had a brother, and then one day I didn’t have a brother any longer. The tearing away of my brother deeply impacted and traumatised me. The tearing away of my brother has contributed strongly to a life characterised with mental health issues, lack of confidence, fear of so many things, especially of my father.

One day, on this day, in this moment, I realise, that I do still, at least from this side of the relationship, have a brother after all.

I miss him, we missed out on so much time together, we were robbed of so many sibling moments.

We have had our times, of arguments, fights, laughter, love and care for each other.

But somehow we remain connected.

One day I had a brother and then I didn’t, and now I do.

Remember that time you did that really silly thing?

I think we’ve all done it at least once in our lives. Done something that could only be described as that thing you should not have done, and was really not the smart choice at all. Tonight or today was one of those moments for me.

I’ve been at a conference today, listening to really smart people, doing really amazing research into a specific part of brain physiology and really specific study on specific addresses of specific genes and subtle mutations. It’s really amazing stuff.

You see one of my kiddo’s, and she is happy for me to say, was born sans Corpus Callosum. For the initiated it is, in simple terms the bundle of nerves, axoms, synapses etc that crosses links the hemispheres of our brains.

It’s a really rare thing. And there’s this amazing consortium of neuropsychologists, neuroscientists, geneticists, in both research and clinical domains that meet together once every year or so to share the knowledge.

This is a great thing, it really is, because the people on the ground, the people missing this part of the brain and caregivers and so forth get to piggyback off these meetings and get some of the insights.

Of course that’s not the silly thing I did.

The silly thing I did was to put myself in a possibly unsafe situation.

I’ve said in the past that the concept of the male privilege that trans women have expererienced or had pre transition is complex, and I maintain that is the case, and even in situations like the one I found myself in tonight, I never felt safe anyway, but I confess, the feelings and emotions that stormed their way through my consciousness tonight were different.

I headed off to the conference this morning, not thinking too much beyond getting myself there on time. I drove my car to the station and happily got on the train. I was not thinking at all about the fact I would be returning home after a long day well into the evening.

Now one thing that has been ever present for me has been a fear at night of being attacked. It’s always been there, that in itself is not a new thing for me. Maybe it’s the fallout of being the bullies favourite victim throughout childhood and a home life that also wasn’t safe. It could be the result of receiving fairly severe bashing on the way to school on Occassion in high school. Whatever the reason that fear has always been there.

But tonight it was more present, more real, more urgent than I have ever felt it before. In a sense I felt, I suppose what women always feel travelling alone on public transport. It was really quite a silly mistake to put myself in the situation.

In the situation though, I realised that there was an extra layer to it. I wasn’t just scared that I would be attacked as a target because I was read as a woman, I was, but there was the extra layer of fear of the bigotry based attack on top of that.

I was potently scared that I was going to be attacked because I was trans. Yes I could be attacked for being a woman, and I was fearful of that, and then on top of that I was fearful of being attacked not just because I was a woman but because I was me.

The potency of the fear I felt was in itself a fearful thing. It’s not something you really think about when you think about transitioning. Sure you think about going out in public, and walking down the street. ANd yes that first time I went out as me was bloody scary, but, I wasn’t totally alone, I wasn’t alone at night and I was fortunate to be with another woman at the time.

Mostly thinking about transition, well for me, has been about hormones, access to services, passing, how I look and how I am perceived, worrying about whether I can see changes happening. Second guessing the changes I think I see. All that kind of thing.

It’s been about following up with beauracracies to change gender markers and coming out to friends and acquaintances, and seeing relationships reevaluated.

There are certainly times of thinking about safety. I’ve found though that mostly those times were not times where it was a real and present concern. They were times when I had the foresight to think about it before hand, and consider how I proceeded with how I went about the things I did to ensure my safety.

Over the months of transition, in the time since coming out, obviously I have had mixed responses, but one of the big responses I have had is affirmations of courage and bravery. Tonight I didn’t feel very brave or courageous I just felt very very silly and very very scared.

I’ve often shrugged off those comments about being brave and whatnot, after tonight I think, maybe, I understand just a little bit more where those comments emanate from.

To those that have intimated such things, from the bottom of my heart, I thank you. I am deeply sorry for not appreciating the magnitude of what you have conveyed to me.

Sometimes, it seems, it’s the shit you don’t think about, the shit that you wouldn’t stop to consider that can bring deeply emotional moments of truth and learning into your life and if you don’t stop to look and comprehend you just might miss an important lesson and maybe next time you won’t get out of it.

Tonight I stopped and looked around at it, and I am sure glad I did. Because I sure as fuck don’t want there to be a next time, or a time where I don’t get home safe and sound.

Looks like a duck, quacks like a duck, walks like a duck… yep it’s a duck!

The official story goes that Leo Kanner was the father of Autism. As official stories go, well it leaves a lot to be desired because it’s pretty far from the truth.

And the truth is, Autism has no father, or mother, It’s always been with us. Over time some influential people have tried to describe it, tried to work it out and tried, even to own it and decide upon it’s naming and so forth.

If you really want to know some more of it’s story it is worth taking the time to read Steve Silbermen’s Neurotribes, which of course is not perfect but it does do a good job, by a non-autistic person to tell a positive story of autism without the gloom and doom and pathology of other works.

A few years ago, in fact it was right around the time when I was receiving my own diagnosis, or identification, a new version of the DSM came out. I am sure there were more controversies in it than just the one surrounding the way autism was being re-catogorised. But as it goes there was a lot of human capital involved in this particular controversy.

I think there are two key things at play in this whole thing. One is very much centred on a group of neurodivergent folk and how they identified themselves, and fear of that being invalidated. The other is more about the history and so on that surrounded how we came to have autism having multiple names within the same diagnositic manual.

Way back, I think during the working up of the DSM III, a wonderful woman was instrumental in the inclusion of a listing, seperate to autism, called Asperger’s Syndrome. Lorna Wing, this amazing woman who gave so much to people understanding more about this mysterious Autism, coined that term, after a man who wrote a paper, Hans Asperger.

Asperger like Kanner described a thing called Autistic Psychopathy. Kanner demanded it be restrictive and applied it only to children. Asperger felt differently. A third man, Victor Frankl, who is likely given far less credit for the emergence of knowledge about autism, than is deserved, worked with both these men.

The thing that Lorna Wing really seemed to have got her head around, is, that because of the restrictive interpretation of Autism that Kanner had a stranglehold on, many autistic people were unable to get a diagnosis, and therefore support, and many parents would not want their child having the diagnosis of autism as it stood.

And so Aspergers Syndrome was born.

Little would Lorna know, but communities of autistic individuals would latch on to the name, shorten it to Aspie, Aspergian, AspieGirl, AsperGirl, and so on. Little would Lorna know that strong communities of autistic people would grow and flourish.

Then along came DSM5. It kind of changed everything, and kind of left everything all the same. The thing it did was to roll all Autism under the banner of Autism Spectrum Disorder, it would then assign levels of that based around the amount of support needs required for the individual.

Gone were the designations of PDD-NOS and, of course, Aspergers Syndrome.

This in my view, was a good thing. Especially given that the consistency between whether one would be given an Asperger or an Autism diagnosis was spurious at best. Essentially to be given an Asperger diagnosis one would need to have not had a language development impairment in childhood. However, in practice, dependent on the diagnostician, some people would be given Asperger instead as it seemed more palatable, or in turn some were even given the non – existent diagnosis of High Functioning Autism, again probably due to it sounding more palatable.

In reality, whether you have an autism or an Asperger diagnosis you are autistic. It’s just the way it is. Aspergers is autism.

Of course there was an issue for all these strong proud communities that had grown around the idea of Aspergers, Aspies and so forth. What would become of them. Very real questions indeed.

The guidance around this at the time of the DSM5 being introduced was all about ensuring those with an Asperger diagnosis were free to continue to use that as a diagnosis label or to switch to and ASD diagnosis label. In the end it didn’t really matter which one was used, because, as I said, Aspergers is Autism.

Unfortunately, some clinicians continue to use the diagnosis Asperger Syndrome because they just happen to like it. In some cases it’s complicated by the use of the ICD10 which still lists Asperger Syndrome.

What should have happen, and I think mostly it has, is that Asperger as a diagnosis is disappearing, and ASD is being used. This is a good thing, for so many reasons, not least of which, it stops us battling as two groups for the same crumbs of support and effectively penny pinching from each other.

The thing that the establishment of course never considered, and it would be a surprise if they had, was the identity factor. So many autistic people wore Aspie as an identity and felt that was threatened.

But the thing is this is all seperate to identity language. It really has nothing to do with it at all.

If you want to call yourself an Aspie, go right ahead, I totally respect that. But here’s the thing, it doesn’t make you not autistic.

Whether you call yourself autistic or Aspie or anything else is your call, and whether you use identity first or person first language is again your call. I will always have a preference for not using Aspie for myself, and I have my own reasons, just as I will always insist on identity first language for myself. I will argue vehemently for it, but I will also vehemently support anyone’s right to call themselves Aspie or Person with, just as vehemently.

Just as when you see a creature that looks like a duck, quacks like a duck, waddles like a duck cross your path, you can be fairly certain it is a duck. So too, can we be sure that Aspergers is Autism and not something different. Not something less severe, not a milder form. It’s all just Autism.

Identity is one thing, and it’s important, but it’s pretty much time to stop this kind of arguing and get on with the job of advocating for all autistic people, in order that they can have the very best outcomes in life, rather than wasting time pretending one is not autistic because an out of date diagnostic manual says so.

It’s like I can breathe again…

For autistic and other neurodivergent people, the month of April is a time of, well, it’s kind of like a double edged sword I suppose. It has opportunity and it has pain. There are things that are wonderful and their are things that are horrendous.

A number of advocates rename the month from Autism Awareness to Autism Bewareness. I don’t do that, I prefer to go another way I suppose but it is surely something I understand. I prefer to maintain a narrative of Autism Acceptance Month in contrast to the Awareness campaigns.

It’s a double edged sword because there are some great things done in regard to acceptance. Many blogs are written and some autistic voices are heard, but, unfortunately a lot of that is us preaching to the choir as it were.

The other side of the issue is that we are bombarded with so-called awareness. And this is where the Bewareness metaphor is highly appropriate. Language of suffering, vaccine injury, devastation, broken lives, trapped, and epidemic are rife. They are rife in the way they describe autistic lives. They are rife in telling a story that we are not really people but problems.

So, when May comes, and April is over it’s kind of like being able to breather again. It’s not perfect of course, because when you are autistic, and connected to other autistic people the subject of autism is never far from the surface. It’s always a regular topic of discussion.

But it is like being able to breathe again too, because, there is an almost seismic reduction in the quantity of Bewareness bullshit that is shoved in our faces.

We hear less about the latest miracle cure, the latest inspiration porn of the autistic kid asked to the prom by the high school cheer leader. The blue light bulbs are gone and the puzzle pieces are reduced.

We can breathe again, and, our message of acceptance is a little easier to get signal boosted than it is in April.

I guess I write this as much for my autistic tribe as I do myself, April is over for another year and we can breathe again, we can pop our head back up and advocate for ourselves with just a little bit more confidence that we won’t be shut down in the name of Bewareness.

We can breathe again, because, even though, we know we are nothing to Beware of, the month of April is pretty much a living hell for us.

So come with me autistic tribe, let’s hold our heads high and breathe deeply of the air that is the month of May and definitively not the month of April.

Forget Bewareness, embrace acceptance and celebration of neurodivergence, the very thing that has given this world we inhabit so much of its innovation over the centuries.

We know the truth, we know we’ve always been around. We know that we are different not less. We know all this, so let’s all breathe the air of that reality again.

On Being Visible…

Visibility is a variant thing. Sometimes it feels easy, sometimes it feels impossible. There are times when being visible doesn’t feel like an act of subversion or an act that requires more courage than you can possibly muster up and use.

A really important member of the Trans community Laverne Fox recently wrote a piece in Elle http://www.elle.com/culture/celebrities/news/a44830/laverne-cox-we-day-speech/. She makes some really good points. And it’s really hard as a white trans woman to call into question something a trans woman of colour has said when it comes to issues of visibility and safety and so forth.

But I feel like I have to wonder. Privilege is complex, and, I think in the case of trans women it’s especially complex. Some argue that trans women had or enjoyed male privilege, I personally don’t think it is that simple. But I do have white privilege, but then I lose a whole lot of privilege by being trans. It’s just not so simple.

I wonder though, what place Laverne comes from now. No question, she has walked this walk for a lot longer than I. But the reality is she now comes from a place of fame and success that many trans women will never come from.

I think these kind of articles can be really difficult for those of us way further back towards the start of our journeys. When the question of passing is as much about how we have garnered up our courage to step out and walk down the street, and we flinch and fright at each and every sidelong glance. Every whisper is a whisper about us, and every oncoming person feels like a risk to personal safety.

I write this, sitting in a cafe with a couple of days of growth on my face, mostly white, because IPL is taking care of that, but I have just returned from an IPL treatment. I made a choice, to be visible. I made a choice to walk down the street to my coffee shop and have a coffee. It kind of feels like it’s a brave act. An act of deliberate visibility.

It’s actually really quite scary. I think, I totally agree with what Laverne says, but, I think it is sheer ignorance to think that not blending in, saying a big fuck you to passing and just proudly being who we are, it contains a layers of stuff that can be really scary.

The coffee shop I sit in, is friendly, the staff are great, always accepting, but the patrons is a real mix of people, and it’s a pretty middle class kind of area, with quite a segment of more elderly people as well as young families and millenials. I suppose I am trying to just say, it’s a bit of a melting pot.

Today this melting pot is scary, well, scarier than usual, because today, my visibility is really obvious, more obvious than normal.

So all of that mixes together to make me fell like, the not blending in thing is an act of bravery, an act of courage and an act of defiance.

I am being defiant, I am, but it’s really a scary thing to be doing, and I can’t help but worry about if I am safe, will stay safe, and get home safe.

There’s no question I am now more comfortable in my skin than I ever have been. I would not never want to go back but, yeah sometimes it’s just scary as shit.

Always calling it a special interest or obsession stigmatises autistic people.

It’s a well known stereotype that autistic people have special interests. Often that stereotype extends to the point of assuming that the interest in question is the only thing an autistic person is interested in and able to focus on or cares about one little bit.

This attitude is an attitude that continues to pathologize and stigmatise autistic people. It may not be intentional, and I know some autistics who are happy to have their interests special as they are very intense about them and happily call them special.

The thing is though, generally, a non-autistic person with that same interest would most likely have that characterised as a hobby or a passion.

You see, for many, the whole notion of special interest is loaded. It’s loaded with the idea that I am somehow special, read disabled, that my interest is somehow abnormal and unhealthy.

It is quite a ludicrous situation that neurotypical people have hobbies and autistic people have special interests or obsessions.

Another way this tends to stigmatise us is that it plays into a narrative of autistic people not being capable of living life successfully. They won’t be able to do this, because they are too caught up in their special interest.

It’s certainly true that at times our focus on our hobbies is more intense than the non-autistic person’s is, but this is not due to us being more special or even the interest being more special. It is more about the fact that a strength many of us have is a strong ability to focus very strongly on single things, pattern recognition and excellent memories.

When these strengths are trivialised and only ever seen to be about “special interests” this contributes to the difficulties autistic people can have in obtaining accomodations to improve their life. It adds to the issue of the extremely high unemployment rate for autistic people.

This is mainly due to these traits, that are in fact strengths, generally not characterised as strengths but us traits that add to a negative perception of what it is to be autistic.

There are many many employment situations where these skills could be applied in beneficial ways. Unfortunately though, too often, they are only recognised in line with the special interests we are perceived to have.

If this wasn’t bad enough, there are times when autistic people express aspects of their identity, be that gender identity, sexuality or other aspects where that is simply dismissed. It is dismissed on the sole basis of it somehow being a special interest.

Absolutely, it is not an isolated case for a transgender autistic person to have great difficulty accessing needed treatment such as hormones and surgery, on the sole basis, in the eyes of a single clinician, that there actual real identity is nothing but a special interest.

Not only is this a horrible trivialising of a persons identity it is gatekeeping of the highest order.

Oh no you’re not really transgender you just have a special interest in women’s clothes is one that I have personally experienced.

It’s time to stop classifying autistic interests as special and non-autistic as hobbies. It certainly may be special to you, because you are intensely interest, but it’s not special in that it is a pathology of autism. It is special because you love it. It is special because you are passionate about it. All of these statements apply equally to what others would simply call their hobby.

I have friends who love cycling. Every chance they get they are out cycling, cleaning their bike, watching cycling and so on. Cycling is their hobby. They are intensely interested and involved in it. But, there is no pathologising of it, there is not a situation raised where it is considered they can’t live a useful life because of it.

No, it’s a hobby, an interest and a passion.

Please stop stigmatising us with statements and questions like “so what’s your special interest then?”

Oh, and this may be news to some of you too, many of us just don’t have special interests at all. How shocking!