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!

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 …

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

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.

How the Âûtistic community helped me to come out as a trans woman…

Image shows a transgender pride flag blowing in the wind.

It’s June 18th which means it is Autistic Pride day, a day almost right in the middle of LGBTIQA+ pride week. Well it’s almost the end of Autistic Pride day but no matter the day is not done yet.

I’ve written about this day before, most recently here where I talk about pride being an act of resistance. This post is not really in that vein but it also kind of is. Because let’s face it this is about coming out and there’s no question that coming out is in itself an act of resistance.

Finding my autistic tribe was very much a moment of understanding, of release, a moment of intense joy and release of the feeling that no one would ever understand and accept me. It was and is an amazing thing.

When you’ve lived your life either being told you’re broken and wrong and believing that to me true at a visceral level which seems to be continually proven by the fact you see incapable of managing connectedness with other people, finding that to be false is a euphoric moment indeed. All those broken dreams all those failed attempts all that belief you would never fit in and would remain an outcast forever suddenly begin to melt away, shrivel up and die.

Essentially it is hope returning.

Hope for friendship

Hope for understanding

Hope for kin

Hope for family

Hope for tribe.

Suddenly hope is not just a word but a real thing to be grasp and believe in.

But for me, and I suspect many it was even more than that. My tribe helped me to explore my self more than I ever had and to come out and live my truth as a queer woman.

That might seem like an odd statement but it’s true nonetheless. You see for me I grew up in a very conservative Christian home with relatives all of the same persuasion. I was never allowed to be who I was, even though much of that had been constructed internally it could never be external. It could never be out. It simply would never be tolerated and family connection, as toxic as it was was largely the only connection I had. Risking that may well have been enough to bring it all to an end.

But finding my tribe, finding the Autistic community totally changed all that. Suddenly here I was finding connectedness and friendship and understanding with so many people, of so many identities, backgrounds and experiences and a discovery of how wonderful this was, how none of the so called rules of what you could and couldn’t be really mattered after all.

I was connecting with LGBTI people, other neurodivergent people, people of variant abilities and diversity and we got each other, we understood. In short we connected and I think, most importantly I was safe.

Finally I had the space the safeness to let myself out, continue to discover beyond the point where I had always wrongly believed I had to stop. Suddenly I could be me no matter what that me ended up being.

Within my tribe I could question my assigned gender, I could talk about it, think out loud about it and even try on something different on the path to discovering what fit. It turns out what fit is a bit queer, a lesbian trans woman.

It was the safety and acceptance of my autistic tribe that allowed me then to come out outside of the safety of that tribe. Without my autistic tribe I am convinced I would still be a very angry unhappy person trying to play a gender role that was not my own.

Today is Autistic Pride day, smack in the middle of Pride Month. Today I am proud to be autistic and proud to be trans. I am proud of my autistic tribe most especially for making me able to trust enough, to feel safe enough, to be me.

On this Autistic Pride day I am a proud out loud visible autistic trans lesbian woman and I am incredibly proud of my amazingly empowering wonderful life giving Autistic Tribe.

Be Proud. Be Visible. Be You and Celebrate Neurodiversity and give “Normal” the big middle finger!

Autistic Pride – #Resist

Back when I was first diagnosed autistic, way back when I was in the first throws of understanding and accepting the reality of who I was I discovered a day known a Autistic Pride Day. I thought this was great. I’m not sure how well I understood it and I am sure I wasn’t really that able to articulate what I had to be proud about.

A typical response to pride festivities is why be proud just for being something. On the surface this seems to have some merit as a question. But I think to really answer it we must ask ourselves where does this pride emanate from? What are its roots? Without that it is somewhat hard to explain what it is to have Pride in your Autistic personhood.

Autistic Pride day sits right in the middle of LGBTIQ+ Pride month, consequently there is lots of Pride images and memes and posts all over the socials. One that is currently doing the rounds and is one explaining some of the roots of LGBTIQ+ pride. It goes something like this:

Pride exists because of a woman

Pride exists because of a trans woman

Pride exists because of a trans woman of colour

Pride exists because of a bisexual trans woman of colour

Pride exists because a bisexual trans woman of colour picked up a brick and threw it at a cop and a movement was born.

Pride then is born of resistance. Resisting the status quo that seeks to other, to sideline, to make less than.

Pride then is born when a marginalised group of people stand and say no more! We aren’t having that any longer! We are people just like you and we aren’t going to take this shit anymore.

All the parades, the flag waving the dancing in the street are the outpouring on the surface of what has come at a far deeper level; resistance.

This resistance in the LGBTIQ+ community has achieved much for equality: decriminalisation, marriage equality, emerging transgender rights, all of which are a part of a larger journey away from being othered by society, away from being considered less than by society and towards inclusion as just another part of the wonderful tapestry of diversity that makes up the human condition.

It would be easy to say but autistic people aren’t othered or seen as less than but nothing could possibly be further than the truth. Just look at the way autism is talked about in greater society.

A disorder

An epidemic

A vaccine injury

A child lost.

Just look at how we are spoken to and about by professionals and parents.

Never be able to look after themselves.

A non verbal stimming puddle

You don’t speak for my child

Don’t call yourself autistic you are a person with autism

So many othering statements are made about us and to us. So many decisions are made about us and for us without our input or consent.

Autistic Pride then comes too from resistance. It started when some autistic people started to say, no we aren’t having that. No we won’t put up with this any longer. No we are just as human as you and just as capable of self-determination as you are.

Autistic Pride comes from a place of resistance, no longer are we going to accept being othered. No longer are we going to accept being described as an epidemic, an injury a lost child. No longer are we going to accept being described and treated as though we are less than the rest of humanity.

Autistic Pride resists! Autistic Pride says no more othering. Autistic Pride says Nothing About Us Without Us. Autistic Pride says we are Different NOT Less.

So my autistic tribe, my neurodivergent siblings, be proud, embrace pride! Embrace yourself as the beautiful wonderful unique gift to humanity that you are.

On June 18 embrace yourself, pick up your infinity symbols of neurodiversity and grasp them with Pride and #resist. Resist those that would other you, resit those that would pathologise you, resist those that would prevent you from self-determination.

#Resist and get your #Autistic #Pride on!

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…

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.

Let’s not box people in…

Tonight, when I purchased my box of noodles together I noticed that the lovely noodle shop man, always says the same sentence as one leaves. Yes, I have purchased quite a few noodle box meals. I caught myself wondering to myself about this man’s little script. Was it a sign, was it a tell-tale hint that perhaps this man might be autistic.

As I walked to my car I chastised myself for that thought. I’ve noticed how often in autistic spaces there are discussions where speculation about people we know might be on the Autism spectrum. They always seem innocent enough, and when these people we discuss are people we know well, possibly even intimately, then perhaps we have a level of insight that might allow us to make such a judgment with some level of accuracy. In some respects, this is just a natural thing.

But, to make such judgments, about people we hardly know, seems, as I reflect on it now, just as bad as the stereotypes and so on that we autistic people tend to find problematic as they are made about us by non-autistic folk.

It’s almost as though what we are doing is the autistic equivalent of those non-autistic micro aggressions like- “well everybody’s a little bit autistic”, or “well that was a bit autistic”, or even “I think I am a bit on the spectrum”. Perhaps we should pay a bit more respect to the complexity of all that goes into diagnosis, whether that be a professional diagnosis or a self-identification.

I had this thought myself, just tonight, so I can count myself as nothing but guilty as charged. From now on I am going to attempt not to do this anymore. I am sure this will be a challenge as autism is such a massive aspect of my life, not just being autistic but in doing advocacy for myself and others, spending time with autistic friends and attending and speaking at autism conferences, and not least being a part of the implementation of an employment program for autistic people.

It’s easy to think this is not a big thing, and I guess in some respects it isn’t really, it’s just a thought we have, that we sometimes share and speculate with our friends about. No biggie really. Well maybe it is a bit more of a biggie than we think.

Being autistic, living as an autistic, is the only thing I know. It’s not a deficit or anything like that, though, dealing with how society relates to me, dealing with stereotypes imposed upon me and everything that goes with that can make negotiating the world more difficult than it needs to be.

The non-autistic world would kind of like it if we autistics just stopped being autistic and be more like the rest of the world. Many of us autistics tend to react to that pretty negatively. Let us be who we are is often the message we try to convey to the non-autistic world. We are not disordered we are different, indeed, Different Not Less is often the catch cry.

So, then, should we not be the same for those that are not autistic too. Is our making assumptions or presumptions about others just our way of imposing an autistic order upon them, our surreptitious way of imposing expectations of their behaviours based on our own stereotypes?

Just as we proclaim we are different not less, it is incumbent on us autistics to accept too that the non-autistic population of this world we inhabit are also different not less. Just as we are, so too are they. They may outnumber us, but that doesn’t change that they too are different not less and it is, I think, as incumbent on us to not impose our view of the best way to negotiate the world onto the non-autistic world.

Perhaps live and let live is a nice little maxim to live by after all.

Accepting oneself, a cognitive journey…

Underneath it all, at the core of my being, within my inner dialogue, in the very fibre of my being, I always new it. I was somehow different. Not different to everyone but different to the so called typical, different to what was considered to be desirable.

I can’t recall ever not having an internal dialogue about being different. Never in my life has there been a time where I wasn’t discussing with myself, working through internally, wondering out loud, looking up information or asking others, why it was I struggled to fit in, to make friends, to be acceptable to the world at large.

Throughout my childhood I endured significant trauma. Physical, sexual, emotional, verbal trauma were everyday experiences as I grew up. I don’t mention this as an attempt to garner sympathy or people to feel sorry for me. The very sad reality is that many people in this world experience similar and greater levels of traumatic experience than I did.

It is what it is.

Something that does seem to be true, however is that those with us who are marked out as different, in whatever form, are more likely to have experienced trauma. Who actually knows which predates which is one of those big questions of life. There is no doubt in my mind that I am different from the point of birth, but the question of whether that difference was increased and exacerbated by trauma, or more disturbingly was the trauma I endured more pronounced because of my being different.

The question itself is somewhat disturbing.

With all this in mind, I want to fast forward well into my adulthood. Living my life in a second marriage, parent of 3 children, struggling to maintain relationships, jobs, manage executive function and maintain a level of mental health that enabled me to function day to day.

By this time I had learned a lot about difference, I had embraced it to an extent. Two of my kids by now had been diagnosed autistic. Both my beautiful wonderful autistic girls present very differently to each other. Thanks to my former partner I had been able to learn much about autism as being definitively a state of difference not deficit.

Going through the diagnostic process with ones children opens the way, I think, for the parent, to engage their own cognitive journey about their own selves. To begin to genuine ask of themselves questions about the difference in themselves they have always known. Does this autism thing explain that difference in themselves. Well that was certainly the case in my situation.

It really was a cognitive journey. A journey of asking and assessing how one thinks, how one experience the world and relationships. One’s sensory experiences. So many things are suddenly up for analysis.

Personally that cognitive journey along a path of sometimes seeing autism as a good thing, sometimes as just a different thing, and sometimes as a negative thing.

It turns out that this journey began a little earlier than I thought it had. And honestly probably even earlier than I am truly aware of. My former partner was dropping hints for me pick up and investigate most likely I believe for longer than I was really aware of. I believe that at some level of sub consciousness I was thinking and considering these hints.

That’s why I think, that when I came across an old note I had made on Evernote where I directly asked myself the big question of maybe I am autistic, was far earlier than I remember really prosecuting that cognitive journey.

At some levels I was scared to take the journey in a deliberate way, and that too had levels. I recall the effort it took to verbalise the idea to my then parter that I think maybe, or do you think maybe, that I might be autistic too?

It took some effort to make that verbalisation, and then when it was out there, there was certainly a period of running from that too.

Personally my cognitive journey from first being aware of genuinely asking myself the questions to self-diagnosis and then formal diagnosis was a number of years, about 5 years of conscious journey and most likely a few more than that too.

Taking the journey is but one part. Accepting the outcome is another part completely. As I made my way through this journey and was able to answer things about myself, explain things about myself and my place in the world and the way I interacted int he world, I seemed on a trajectory of becoming more confident in the outcome. And so it was, with some level of certainty that I took myself off to a clinical psychologist for a formal diagnosis.

The outcome was as I believed it would be, though, the emotional questioning of myself and the thinking that maybe I was reading too much into thing and confirmation bias was at play and so forth were certainly present as I arrived at the psychologist to receive the results.

Generally at this point, I rightly believed I was autistic. Yet this didn’t prepare me for how I felt, and that I would struggle with accepting what this meant.

For a decade I had maintained a positive different not less attitude to autism and an attitude somewhat akin to the neurodiversity paradigm. In interacting with my kids, I wanted to understand and make their lives as good as they could be, and I wanted to do this without fixing or changing them.

But then suddenly I was diagnosed.

Suddenly I felt guilty.

I was angry at myself for what I had supposedly done to my children.

I was broken.

This was ridiculous. This was totally out of sync with what I had believed and how I had approached the reality of autism in my own kid, and in the kids I was privileged to teach in my short Primary School teaching career.

I was more depressed than normal. It made no sense to me that this was how I was, but it was how it was. I was somewhat angry at myself because of it.

It seemed I had to go on some level of a personal cognitive journey all over again. It was a journey that was punctuated by the idea that this is what you know and believe about autism, so why is it different now it applies officially to you.

I am thankful that this journey was relatively short, I think about 9 months. In this time I didn’t want to disclose my diagnosis, or when I did it was with some level of shame and embarrassment. The autistic pride I feel and try to convey was very far from present.

A chance meeting changed everything. At a conference in Brisbane, a short but instructive conversation with an eminent neuropsychologist changed everything. I was sharing with her my diagnosis, my feelings of shame and guilt. As I spoke and as she listened, suddenly the sheer ridiculousness of what I was saying seemed evident. Her response of saying to me Roe, listen to yourself, you know you’re talking shit. You’re just different, you and your kids are not less, you’re different and and wonderful. Embrace it.

In a moment, in a glimpse of time everything changed.

It was as though in that instant a paradigm shift occurred, internally my mindset shifted from guilt and shame to acceptance, celebration and pride.

The next day was the day I started my autistic focussed Facebook page and recommended blogging and writing.

Everything changed. And everything changed because of autistic pride.

Everything changed because of acceptance.

Everything changed because I could finally see and believe that autism really was:

DIFFERENT NOT LESS