Q is for Queer

Banner image with patchwork style colours and the word Queer in block letters

Q is for queer. What’s that got to do with autism and being autistic you may wonder. Well as it turns out a significant amount. Large portions of the autistic community identify on the LGBTIQA+ umbrella. There are quite a lot of us that are autistic and queer.

Recent studies show empirical data that 35% of autistic folk are queer. Anecdotally many of us believe this is a conservative result and believe that the real number is somewhat higher than this. Whether we are correct on that belief or not is not that important because we already know that the intersection of autism and queerness has a high prevalence. A much higher prevalence than for the non autistic community.

Why does this matter? It matters for a bunch of reasons. Not least because it places us in a situation of being twice marginalised, twice oppressed and fighting for our human rights in multiple domains.

Lots of ink has been marked in hand wringing asking questions about why this is so and whether this is just an interesting correlation or is there something more significant that has created this human situation.

I don’t know the answer, sure it is interesting to speculate that perhaps the same genes and epigenetic factors are in play. Maybe that’s true maybe that’s not true, interesting but not really that important.

What is important is how queer autistic folk are able to make our way in the world and have the best life possible. That’s the important piece here. In the end we are autistic folk who are queer here and refuse to live in fear.

Autistic folk struggle for self determination. We struggle to see a reality of nothing about us without us. We struggle to see our lived experience, our insight and our insider knowledge about what autism really is like recognised by both the professional and the parent communities around the autism space.

Queer folk struggle also for self determination. Just recently in Brunei we have seen a horrendous law of the death penalty by stoning come into play. Bi+ folk are regularly and consistenly erased and told they are selfish, promiscuous, undecided, just not decided and equally horendous things. Trans folk are forced into sterilisation in order to simply have their identification documents reflect their correct gender. Non-Binary folk are continually told they are deluded. Asexual folk are almost completely erased from visibility. Some of these issues occur not just from those outside the queer spectrum but within it.

Living as a queer person is hard. We are subjected to people deciding on the validity of our existence throughout the world on a regular basis.

Living as an autistic person is hard. We are subjected to actions designed to fundamentally change us. We are subjected to a public narrative that people must be aware of us. Whenever a lone gunman shooting occurs we are subjected to the shooter being said to be autistic in the media.

Living as a queer autistic person has the combinations of those difficulties, they are compounded and then there is the unique difficulties that come with those thing. For example trans autistic folk being denied care because their identity is declared invalid and simply a special interest. Other queer identities who are autistic find similar discarding of their identity by professionals and family because they are not seen as able to have adequate self determination of themselves.

Being a queer autistic also makes moving between those communities as a queer autistic person is also difficult at times. We face accessibility issues accessing queer spaces due to a range of different circumstances, some are ableism, some are sensory factors, some are ignorance. Being queer in autistic space can also be difficult due to the predominance of cis straight and mostly white men who are dominant vocal and powerful in those spaces.

You would think that our access to autistic spaces would be easier given there are a lot of us. Well things are on the improve I think, but cis white male homophobic and transphobic views are still certainly in play.

Q is for Queer.

I’m a queer autistic person and I am fabulous.

Q is for queer

We’re queer we’re here and we will not live in fear!

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My Inability to make eye contact does not need to be fixed.

Previously published in The Establishment

Concentration, empathy, and attention have long been linked to a pair of eyes meeting directly. It’s often intimated that if someone isn’t looking you in the eye when they speak to you, they should be treated with suspicion, or at the very least the content of what they said should be treated as such. “Look me in the eye and tell me that” is a term used almost interchangeably with “tell me the truth.”

But what if it’s difficult for a person to maintain eye contact? Should that person be judged as insincere, untrustworthy, or socially flawed?

For those with autism who struggle to hold someone’s gaze, these assumptions are often made. And, as someone who’s suffered as a result of these assumptions, I want people to understand why they’re so damaging.

***

Difficulty in maintaining eye contact is such a known part of the autistic experience that John Elder Robinson titled his autobiography about life with Asperger’s Look Me in the Eye. The Indiana Resource Center for Autismdescribes the many ways this difficulty can manifest:

“Some people who have autism actively avoid eye contact and appear confused and anxious when it occurs. Some seemed to make eye contact relatively early but later reported they were actually looking at something that fascinated them (such as their reflection in one’s eyeglasses). When cued ‘Look at me,’ some make eye contact that recipients experience more as a staring gaze than as a communicative exchange. Some gradually learn to make eye contact and to read simple meanings that they have come to understand through experiences with what happens to them when a particular person’s eyes have a specific look.”

While research on this is limited, there are some theories as to why eye contact is hard for some with autism. It’s been suggested that in children with autism, for instance, an inability to hold eye contact has to do with a reduced ability to govern eye movements.

Of course, none of this to say that eye contact is an issue for every autistic person; the saying if you’ve met one autistic person, then you’ve met one autistic person very much holds true in this case. But it’s clear that it’s an issue for some in the community — and equally clear that there’s a stigma attached to it.

In Look Me in the Eye, Robinson listed his inability to hold someone’s gaze as one of the reasons he was branded a “social deviant.” I regularly see posts in support groups on social media in which parents comment on their child with autism not providing the “desired” eye contact. And this stigma cuts both ways: I have also heard stories about people being unable to gain an autistic diagnosis because their eye contact was too good.

There are also many therapy programs designed to “encourage” or “improve” eye contact in autistic children, including in Applied Behavioral Analysisprograms. Research and educational documents with titles like “Teaching Eye Contact to Children with Autism” and “Making Eye Contact A Reinforcer” further aim to “help.”

The suggestion is clear, and even explicit: An inability to hold eye contact is a “social deficit” that must be “fixed,” rather than a perfectly normal and acceptable aspect of the autistic experience.

I know from personal experience that such suggestions can do real harm.

***

When I was growing up, eye contact was mentioned during confrontations at home where my truth was demanded. “Can you look me in the eye and tell me that?” I was asked. But I can’t recall either of my parents ever saying outright that I should look people in the eyes more, or that it was an expected part of communicating with others. Problems didn’t really occur until my early school days, when teachers insisted that I should look the person I speak to in the eye. During these exchanges, I learned for the first time the pain and trauma that could come from meeting eyes across space.

Yes, I do mean pain, and yes, I do mean trauma.

Eye contact actually hurts me. If I meet the eyes of another and hold their gaze for more than a microsecond, I experience sharp discomfort throughout my entire body. When making eye contact, I also feel that my very soul has been laid bare — that my every inner thought is on display, and that my mind can be read and my secrets made public. The best I way can explain it is that it’s like being opened up totally from the inside out for all to see.

It’s a horrible experience, to put it bluntly.

This is, of course, my unique experience. But I am seemingly not alone in it. And I have to wonder: Instead of focusing on how to teach autistic children how to maintain eye contact, wouldn’t it be better to teach society that some people will look you in the eye when they talk to you, and some will not? And that this is perfectly okay?

A lack of eye contact isn’t a sign that a person lacks attention, empathy, or care; there are better and more effective ways of gauging these qualities in a person.

Just because I can’t hold your gaze doesn’t mean I have a problem. But it’s time to confront the fact that our culture does.

M is for Meltdown

Meltdown is part of the vernacular for both autistic folk and those that love and live with us. Meltdown is like the ever present unwelcome guest that could make an appearance into our lives seemingly without warning and with no real idea of where it came from.

Well, at least to the uninitiated that is.

Meltdowns are always proceeded by situations, signs, triggers and contexts which point to them occurring. They are never really without warning they are never really uninvited.

Learning to see and react to these signs of course is where the learning is and where by we can act in ways to release such triggers and make life that little bit better for ourselves and our autistic loved ones.

A meltdown is ‘an intense response to overwhelming situations’. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control. This loss of control can be expressed verbally (eg shouting, screaming, crying), physically(eg kicking, lashing out, biting) or in both ways.

Meltdowns are intense and horrible things to endure — both for the one experiencing it and those witnessing it.

A meltdown is not a tantrum — even though it may look for all the world like one. It may look like but what is going on for the person is not unacceptable behaviour to get what they want but a very real very visceral response to being overloaded and unable to deal with, process and cope with the situation at hand.

Meltdowns are visceral.

Being in a meltdown is horrible.

Personally I am thankful I have managed to identify a lot of my triggers for meltdown and so live mostly without them. I haven’t had a genuine meltdown for a couple of years. But, Meltdown still lingers as that potential uninvited guest. If I don’t take care of myself, be aware of my sensory load, be aware of all the things I know that can trigger a meltdown that it can come crashing in and enact itself very quickly seemingly without warning.

I despise having meltdowns. For a long time, most of my life in fact, I thought my meltdowns were tantrums. Because that was what I was told they were by abusive carers. I believed them. But I could never stop them. They were never a choice and I could never work out why I had zero control over them.

Post meltdown I feel utterly exhausted, utterly horrible and utterly ashamed. Yes ashamed. Cognitively I know, especially post meltdown that my behaviour was unacceptable and often scary for those close by. Even within a meltdown I experience a sense where I am somewhat outside of my body and a spectator to what my body is doing. I can even look at that behaviour as a spectator and know it is not acceptable, dangerous and could hurt both myself and others.

But in the moment I genuinely lack control.

It is as though I am in a car racing down a steep hill towards a giant precipice with failing brakes. All I can do is hold on and endure and hope for all hope that it doesn’t end in disaster.

Meltdowns are scary. They really are, are and I have never met a fellow autistic person who doesn’t wish they could just stop having them forever. We hate and despise them just as much as those around us do.

M is for meltdown…

There is lots we can do to avoid and minimise their likelihood. We can manage our environment, our energy, our exposure and such things to minimise as much as possible the chance of a meltdown event. We can mitigate but not eradicate.

When a meltdown does happen not much can be done really except riding it out. There are a few things to do to ensure the person having a meltdown and those around are safe. Try to ensure the person is in a place where they won’t hurt themselves due to the environment — ie sharp corners etc, remove any unnecessary people, minimise interaction, offer comfort, stim toys, quiet, darkness.

Post meltdown we feel awful and are often exhausted. Such an event is energy sapping both physically and emotionally. Autistic folk often need after a meltdown the freedom to just be, to sleep, to hide away under a blanket to soothe.

I for one need time to recover both physically and emotionally, usually through sleep lying down in a darkened room. During this time I will spend time in my thoughts, thinking about how terrible my behaviour was and how I can best regroup and re enter relationship with those around me. I also spend that time thinking about the situation and what it was that tipped me over into meltdown.

As horrible as a meltdown event is there is opportunity to learn about ourselves from the event.

M is for Meltdown…

They are an everpresent aspect of being autistic. Never can they be expunged from our experience but they can be managed, we can learn how to experience them as safely as possible. And yes we can learn how to see them coming.

Seeing them coming is just the first part acting to release the pressure is also incredibly important. I try to do this, sometimes I fail.

I really important factor of self agency for autistics is releasing pressure that leads to meltdown. If an autistic does not have that self agency they may not be able to act to release pressure, to remove themselves from a potentially triggering environment and this is a recipe for disaster.

M is for Meltdown

We hate them.

You hate them.

Let’s work together to minimise them as much as we can.

G is for Gender …

G is for Gender …

Golden Neurodiversity Symbol with Gender symbols incorporated

Throughout this piece TGD is used as an acronymfor Transgender and Gender Diverse

You may have noticed I have been re posting a series of posts I wrote a few years ago which can best be described as an alphabet of autism. Over the last several days it has become clear to me that I missed a few issues as I went through this process previously. For example, I had G is for Game On and Q is for Quack. It seems far more relevant now to have made those posts about Gender and Queerness. So, it is time to rectify that.

G is for Gender, Gender Identity, Gender expression.

Let’s be clear there are not only two genders and gender is absolutely not tied to biological features such as genitals. If you can’t accept the reality that there are infinite possibilities of gender then perhaps don’t read on.

Let’s also be clear that Trans and Gender Diverse(TGD) and Intersex are not to be conflated.

Gender identity and expression are very important issues generally but extremely important in the context of autistic folk. There is an evolving body of research which shows a correlation between Trans and Gender Diverse folk and Autism. It is getting to the point where this simply can’t be denied. It is in autistic community a very common intersection.

Autistic folk have something of a battle of having themselves seen as autonomous human persons in many spaces. This is even more true of TGD autistic folk. Thanks to a history of autism research and therapeutic practice that has focused on cause cure and conversion autistic folk have had to fight every step of the way to construct their identity and have that identity accepted as a valid human identity.

TGD folk also have a similar fight around their identities being accepted.

When autism and gender identity intersect in a human person then that person has a journey ahead of them where they will, far too often, have to justify their identity to others, and sadly often to those closest to them and those that are meant to care for and support them.

As an autistic person who is also trans I have had to hear on many occasions comments that attempt to invalidate who I am. Comments such as these are commonly delivered as if they are meant to be sincere. They are not. There is simply no sincere way to tell a person their very identity is invalid.

“Oh you’re not really trans it is just your current obsession” — there is nothing sincere in such a statement.

“You don’t have the social capacity to understand the social construct of gender” — nothing sincere here

“you can’t be trans you don’t understand human emotions”

Apparently, it is autistic folk who are said to lack empathy! I have experienced very little empathy in any of the above comments.

This is not a gender 101 post if you are interested in understanding gender then google is your friend.

G is for gender…

We know there is a high proportion of TGD folk within the autistic community. We know this! Research is confirming this consistently. And yet specific services and spaces for TGD autistic folk are few and far between.

We know this and yet local, regional, state and national autism task forces and strategy think tanks fail again and again to make TGD and Queer folk generally a priority in these discussions. Research shows that upwards of 35% of autistic folk identify on the LGBTIQA+ spectrum and yet are consistently forgotten about in strategies for autism and autistic people.

This is simply not good enough.

G is for Gender…

The fact that strategy and research in this area for the wellbeing of autistic TGD folk is a case of neglect by the professional autism organisations.

We know that the life expectancy of autistic folk is one of the lowest of any group of people — lower even that that of Indigenous Australians.

We know that around 50% of TGD folk have attempted suicide before they reach the age of 18

When these two things intersect the risk to autistic TGD lives is palpable. Governments and professional organisations need to stop pretending we don’t exist and stop erasing us from strategies and plans and start living up to their goal of supporting autistic folk.

G is for Gender…

As the gay men in the early 80’s cried “we’re queer, we’re here and we will not live in fear” so too to we autistic TGD folk proclaim we’re here too. We need you to see us. We need you to acknowledge us, we need you to consider us.

G is for Gender …

Our identity is valid, our pronouns are valid, our gender expression is valid.

We are valid.

G is for Gender …

It may seem like an inconvenience but getting our pronouns correct is important. Referring to us by the words we use to describe ourselves and not invalidate or belittle is important. I don’t really care what you actually believe about us but it is our identity and it is simple respect to respect it.

As autistic folk making our way in public spaces can be difficult in its own right. Making our way in public spaces as TGD autistic folk can be even more so. Public bathrooms for autistic folk are often hell, loud noisy dryers, harsh lighting, a myriad of smells etc. This is even more so the case when you have to negotiate that space with the fear of being told you don’t belong there, being harassed and publicly outed ads another layer of complexity to all of this.

G is for Gender…

We are here, we are diverse and we are magnificent.

We ask simply that you see us, include us, and celebrate us.

G is for Gender …

And Gender is fabulous!

Autistic ≠ Bad Behaviour or not knowing right from wrong

Autistic ≠ Bad Behaviour or not knowing right from wrong

Image shows the heading Autistic Pride with a multicoloured neurodiversity symbol

I’m autistic and I’m proud of that fact. I’m proud of it because I am me, I have found myself I have found my tribe I have found belonging and freedom to be the person I am and to grow into the best version of that person that is possible.

I’m autistic and I’m different not less. That means I uphold that as an autistic person I am different I am neurodivergent from the so called normal. I am not typical. This makes some things in life a little difficult, and conversely it provides me with strengths and skills that I may not have otherwise.

But, I’ll tell you what it doesn’t give me. It doesn’t give me license to go and do whatever the fuck I like. It doesn’t provide me an excuse, reason or justification for hurting other people, breaking laws and generally being an asshole.

Just because I’m autistic doesn’t mean I can’t tell the difference between right or wrong, in fact it likely gives me a heightened sense of that fact. I simply am unable to recall a time in my life when I was not able to tell what was right or wrong. In fact I have a very sharpened sense of justice and fairness and I believe this to be quite a common autistic trait — we like rules as the stereotype goes.

So here’s the big question why is it that so many want to use autism as a reason or excuse for bad behaviour by autistic men. I don’t have a diffinitive answer but I do have an inkling of an idea. That as parents, carers and professionals we have failed autistic boys by excusing behaviour that is simply not acceptable and associating it with a false notion of not having the capacity to understand.

I’ve seen it all too often in autistic men in online spaces. This is difficult to say and is possibly not too popular but all too often I see autistic men in online spaces display predatory harrassing behaviour towards women online and when called out on this behaviour blame social communication aspect of their autism to excuse it.

This has to stop. Autistic men it has to stop. You know right from wrong and behaviour that stems from male privilege and toxic masculinity is not acceptable behaviour either online or in actual face to face interactions.

It is certainly true that often we autistic people miss or misinterprit social communication and cues. This is a fact of autism this is the nature of being autistic. But, what we don’t lack is the capacity to understand a direct communication telling us that something is not acceptable.

It’s not unheard of for an autistic person to miss nuanced social cues that a person they are interacting with is not interested, bored, wants to get the hell out of the interaction they are in. This is one of the challenges that pretty much all of us autistic people face on a regular basis.

There is though a very clear difference between that and a person continuing on with their behaviour when they have clearly been asked to desist. Allistic people it seems will generally try a sublte hint that they want out of an interaction, often we autistics miss this, however allisitc people don’t generally just stop their when that doesn’t work, they will tell us, pretty bluntly at times too, that enough is enough.

For far too long within our own autistic community and in the broader autism communities there has been too much allowance of social difficulties as excuses for unacceptable behaviours. It’s just the autism we say, he doesn’t understand we say, it’s time to call bullshit on that line. It really is.

Harrassment is harrassment and Abuse is abuse. Neither of these things is social communication difficulty they are what they are and it’s time to stop.

Autistic men, and it usually is men, this has to stop. It is time to take responsibility for unaccaptable behaviour towards other humans and make the change.

Parents of autistic people the responsibility is on you too to ensure that never is autism an allowable excuse for behaviour that is unacceptable towards another human person.

Yes absolutely many of us will always struggle with social cues and communication. That’s kind of a given for an autistic person. It’s also a given that we might just have to work a little harder in order to have successful social interactions. It may not be fair but it is what it is.

Let’s be clear the problem with violence in our society is nothing to do with autism, it is mostly to do with toxic masculinity and the long standing male belief that they are entitled to womens bodies.

Let’s also be clear that not only is autism no excuse for violence, for murder, for rape, but also it is no excuse for predatory and unsavoury behaviour towards other humans ever.

It’s pretty clear that to change the situation and make real change in the devastating reality of violence against women that it is going to take men to change things.

I think, as I get to the end of this that this is my call to autistic men. Autistic men stand tall and strong and be the shining example to all the other men that harassing, unwanted, predatory and violent behavior towards other human persons is simply unacceptable.

I am Autistic and Proud and across the pages of history Autistic people have led our societies with things like science and technology innovations and so forth. Come on autistic tribe let’s lead in this and let’s create the snowball of change and let’s make a stand and proclaim it autism is never an excuse for behaviour that harms another, whether physically or psychologically or in any way whatsoever.

Autistic Pride let’s be the change this world needs.

The A-Z of Autism April 2016 — Updated 2019

The A-Z of Autism April 2016 — Updated 2019

In 2016 I wrote a bunch of blog posts throughout April, which is known variously as autism awareness month, autism acceptance month, hell for autistics month and of course simply just April.

I thought it would be good to gather these posts into a series to make them easier to navigate.

Enjoy.

Links to each story below:

A is for Autism…

B is for Bandaid…

C is for Communication

D is for Different

E is for Eye Contact…

F is for Fluctuating Functioning…

G is for Game On…

G is for Gender …

H is for Happy…

I is for Intensity…

J is for Juggernaut…

K is for Kinfolk…

L is for Liberation…

M is for MMS…

M is for Meltdown…

N is for …

O is for Obsession…

P is for Pervasive…

Q is for Quack…

R is for Research…

S is for Sensory…

T is for Tired…

U is for Understand…

V is for Valuable…

W is for Words…

X is for Xenophobic…

Y is for Yearning

Z is for Zenith…

Humanity is always the platform.

Some years ago now I became familiar with the the metaphor of autism being a different operating system. It was put out there as autism being like a mac in a windows world. I remember thinking at the time that perhaps this was not the best analogy and that perhaps unix or linux was more likely a better metaphor than max or OSX was.

My thinking around this was that mac has become much more mainstream and expected than unix or linux has. Linux is still very much a niche corner of the personal computing market. Regardless of numbers or marketshare and whatnot any operating system requires an architecture or platform on which to run. No matter how good your operating system is it is always contingent on the hardware or platform on which it runs.

In terms of the personal desktop and laptop environments the platform or architecture on which operating systems run are generally an intel based central processing unit supported by suitable motherboard and ram memory units to enable the operating system to run.

Shifting focus now, imagine if we think about humanity as the platform or architecture or hardware on which the operating system — or neurology — runs on top of. Regardless of whether one’s operating system is neurodivergent or neurotypical one is still running on an underlying system of humanity.

I think this is an important point. Often neurodivergent folk — disabled folk in general really — are dehumanised, they are considered to be somewhat less than. Somewhat less than when drilled down really comes down to meaning less than human. This is clearly seen when the bodily autonomy of disabled persons is routinely ignored. This is seen when disabled folks rights to privacy are seen as less than the right of parents, caregivers and professionals to display these disabled folks lives across public forums.

In short society regularly places the humanity of disabled folk contingent upon how they impact the lives of those around them. This is most horrendously seen when disabled folk are murdered by their caregivers and community responses are not outrage at the murder but calls for understanding and sympathy for the murderer who must have had such a tough time having to live and care for the disabled person.

When we fail to uphold the inherrent humanity of every human person regardless of their ability or disability we start on a process of dehumanisation of actual human persons. We take it upon ourselves to judge and categorise which humans actually have the right to be treated as having inherrant humanity and by extension having actual human rights.

Autistic people, other neurodivergent people, physically disabled people, otherly disabled people. We all have something in common we are all actual human folk, and as such are entitled to the same human rights as non disabled folk.

When we see humanity as the platform, the basic building block upon which our physical abilities, our intellectual prowess, our neurological systems are built then we start from a place where humanity is valued in each and every person. If we fail to do this, then, I would contend that we ourselves have begun down a path in which our own humanity has been compromised.

If humanity is the platform we see personhood built on then the operating system which is working on it becomes transparrent to us actually viewing the humanity of the underlying person.

I am an transgender autistic lesbian woman and I am a human person. My human rights, just like any other human persons should not be negotiable. Not by plebiscite, not by judging my financial contribution, not by judging my social contribution not be any of that. No not at all.

Every human persons human rights should be non negotiable.