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!

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…

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.

Searching for Solace

Today, I just have a need to write something. It will be whatever it will be. These last few days have been incredibly emotional, I am not great at identifying emotional stuff within me much beyond happy and sad, angry and and pleased. Going further than this into the nuances of emotions is a thing I struggle with.

It’s not that I struggle to know that these words that I have are inadequate to describe the feelings and emotions I am experiencing. I know fully that these are not adequate descriptors and I feel the nuances and the extreme fluctuations in my feelings and emotions. Naming that however is much more difficult a task. A task that is not much more than a stab in the dark for a word that might fit.

It’s the last day of the what is colloquially known in Melbourne as Cup weekend. It’s a bit of an unofficial four day weekend in Melbourne. The first Tuesday in November is when the famous Melbourne Cup horse race is run, and for residents of Melbourne that Tuesday is an official public holiday. What invariably happens is many people take the Monday as an extra day off and make it a four day weekend.

Primed for a relaxing and enjoyable weekend, I was planning to work the Monday, but nevertheless have a good weekend with some time spent with my kids as well as chill out time for myself, I arrived after a bit of a sleep in and a lazy late morning coffee at a local cafe at my former partners home to catch up with my kids.

I was not ready for what greeted me. News that my former father in law, does someone really ever become a former father in law? Well he was in hospital and the new was that he was dying, it was just a matter of time. I was somewhat shell shocked and shattered at this news.

My former partner was resting after spending all night with her father. It was by all accounts harrowing. Her dad had gone into a state of delerium and it was tough to hear some things, and bizzare too off course.

I suppose, I am not sure what the process really was for me, but I seemed to click into being a supportive person to my ex and of course my kids. It was as though this just happened, it wasn’t as if a consious thing happened. It just was what it was.

The next couple of days really through to Monday morning, I spent with my kids and ensuring my ex had what she needed as she negotiated this time with her dad. I did my best to be strong and supportive for my kids and my former partner. I think that overall I did a good job.

I ended up taking Monday off work after getting the news he had died at 1am in the morning. I felt I needed to be there, to support, in whatever way I could my kids, my former partner. I wasn’t sure how that was going to go down but I needed to do it.

Well it turned out they just wanted space and I was pretty much on my own. In that I realised that I was beginning to grieve myself. I had held it together for the others and not thought about my own feelings and emotional responses.

The relationship I had with my father in law had been fractured at times, and yet, we both loved each other. He had wanted to be a father to me, and I had wanted him to be. My own father was incredibly abusive and I went no contact with him many years ago. With my father in law, though, it seemed matching up our complimentary desires never quite worked out in reality. Some of it of course was my fault and some of course was circumstance and some of course was his projections of what I should be, and of course my receiving of those projections in a distorted and twisted sense of what they were.

We shared times of joy and laughter. Unfortunately we also shared times of hurt and judgement at each other. This was exacerbated when the relationship with my former partner fell apart, and my transition as a trans woman was something he really struggled to accept. There was one occassion that was extremely difficult, in anger and raised voices he called my by my birth name repeatedly getting louder as I refused to answer, he demanded I stand up and be a man, and asked my former partner if he ‘had’ to use my chosen name.

It was an incredibly traumatic day. It hurt deeply, and I wasn’t sure what the future held for us.

I only got to see him a few times after this, and thankfully they were positive exchanged. My transness was kind of just not mentioned and somehow we muddled through.

I know it is only a short timeframe since it happened, I get that, but I have this feeling of not knowing where to place my own grief in this situation. Almost as though I am meant not to have this, but I do, and that is what it is.

It is as though I have to forget it all and be the supportive one, be with the kids, provide the space and support for the rest of the family and somehow not have any support thrown back to me by them. It’s really hard.

I am hurting, and finding the words to name that hurt is difficult, naming the feelings and emotions is difficult. All I know is that they are raw, deep and painful.

In a couple of days is the funeral. Internally I have questions raging about how I present at the funeral, am I truly welcome even? I will have to travel from work to attend the funeral and so another layer of complexity to that quetion of presentation is added. If I just wasn’t going to work that day, I guess I could just present in some kind of androgynous way, not because it is the way I want to present but, really, if I am honest, because it would be easier, easier for me and definitely easier for the family.

I have been presenting full time as a woman for more than a year now, and the idea of presenting as anything different feels like a kind of betrayal of myself. I have never presented as anything but female at work and so it would be somewhat out of the box to be doing anything other than that.

Where I am at I guess, at this point, is in a place of pain, a place of trying to understand that and process it. Process the complexity of the relationship I had with my father in law, for all its difficulties the reality is that his loss is a great source of pain.

I wish I could more easily name the things that I feel, I wish I could, but it seems very very difficult and I am not sure how to proceed.

I’m hurting and looking for solace I guess. I wonder where it will come from. I know it will come, but from where at this point is something of a mystery.

Functioning smunctioning…

It’s not a real diagnosis, high functioning autism. Even though I have a piece of paper from a clinical psychologist with those words on the page. It doesn’t make it a real diagnosis.

Neither does the use of those words on reports by researchers phd candidates, post doc researchers or genuine accredited scientists. Using a set of words consistently, and forcefully to explain a thing doesn’t make it so that those words suddenly become a correct thing. It doesn’t matter how many people say them, it really doesn’t.

So many time I’ve had conversations, comments and exchanges of messages with people about it. And it doesn’t make a squat of difference to the reality that high functioning autism is not a thing, and of course neither is low functioning. There is autism, and then there is the way a person functions in the world. The latter is influenced greatly by environment, culture, expectations, comorbid conditions amongst a giant fruit salad of things.

An autistic friend of mine, a very intelligent man who holds a phd would likely be described by those functioning labels, and yet at times has trouble working out what he was intending to do just moments after setting out to do it.

I couldn’t count the number of times I’ve been described as high functioning, and in life, in many ways I do manage to function well. I have a good job. I hold multiple bachelor degrees. And yet, getting day to day tasks done are some of the most difficult things in the world to accomplish. Things like ensuring I maintain good hygiene, wear clean clothing and those simple things of life that it seem the so called typical people just seem to do, prove to be almost impossible.

I’m not high functioning in so many ways. This is so important for people to understand about autistic people labelled as such. Because of this labelling it is incredibly difficult to gain support to negotiate life and be successful in achieving the life outcomes that most people take for granted.

Of course all of this doesn’t even begin to take into account the impact of sensory input on how well a person manages to function in their day to day life. Neither in this is the fact that the increased effort required to look as though we function largely like the majority takes on our energy levels and rest and recuperation requirements.

Add into the equation time of social misreading, communication differences and again functioning is impacted greatly.

I would imagine that non autistic neurotypical people would argue that these same things impact their own ability to function in the world. And of course in large part they are most likely, to a point, somewhat correct. Which of course adds weight to the argument that high functioning and low functioning labels are totally incorrect and inappropriate explainers to add to the autistic way of being.

I’m not a high functioning autistic person. I am an autitic person, my functioning varies and fluctuates just like everyone’s does.

In the end, when it all comes down to it. When we drill down to the actual reality of it. I’m not a high functioning autistic, because, such a thing does not exist. Not as a diagnosis not in the DSM5 not in any official diagnostic material. Period.

No, in the end I am just an autistic person, doing my best to negotiate and make my way in the world as best I can. Some of those things I will do well and some I’ll make an absolute mess of.

I’m just a human, just like everyone else.

Recruiters, businesses, HR departments – do you have the courage?

I’ve been in my job now for just two short weeks, and so far it has been an overwhelmingly positive experience. Sure, nothing is absolutely perfect, and I am beginning to get over all the internal training and reading of documents, but it’s a good place to be. Firstly and foremostly it’s a good place to be in just having a job. More than that is that it’s a good organisation that actually cares about their people and wants them to do well.

If it hadn’t been for the alternative process, finding myself in this position would in all likelihood never have happened. I would have or had the likelihood of failing at multiple points along the way. I could have stumbled in managing to match myself to the position to apply for, or I could have stumbled at the point of writing an application letter, of putting together a resume that was appropriate. Interviews are not set up to be places of success for autistic people, and going through a typical interview process was again a point of stumbling and failing.

There are so many points on a recruitment journey in which an autistic person is prone to stumble or fail. Mostly, those stumbles and failure points are not a reflection on how well the autistic person would be able to be successful in the position at all, but, about how well they are able to navigate a recruitment process that is, to put it bluntly, stacked against them from the beginning.

In Australia, where I live, the statistics of employed autistic people are staggeringly bad. It seems autistic people as a group have the worst employment outcomes of just about any disability group there are. Somewhere in the vicinity of 40% of us have employment. And by employment, well, that’s what they call the workplace participation rate, and it means as little as a couple of hours a week. Essentially 6 out of 10 autistic people have no work. Of course, there are some who are not able to manage work, but that is certainly a very small minority. Most of us, want to work, are capable of work, would add value and be able to be successful in the organisations that gave us a chance.

I spent the preceeding four years as one of those 6 out of 10 with no work, it was agonisingly difficult, a constant assault on my sense of self-worth, my resilience to keep going, my belief in myself as a person with something of value to give to the world.

I know I was not alone. I am beyond fortunate to have been able be a part of a couple of things, that placed me in a position where a couple of the right people were able to see that I did have value to offer the world, and those people were able to make contact with another who was able to institute a recruitment process outside of the normal.

But, here’s the thing, it shouldn’t have needed to take the formation of that perfect little sequence of events for it to happen. With all the education, history and knowledge housed in the human resources world, it’s about time they realised that sometimes they need to do things outside of the typical in order to achieve the best outcome.

I did have to have a couple of interviews, but they were in a setting that put me at ease, conducted more as an informal conversation and exchange of ideas and discussion around things I had done, could do, and where and how I might fit into the organisation. A very different experience to sitting in a boardroom or the like in front of a panel of people firing questions, which had to be answered in the right way, all the while negotiating and working out the hidden social communication frameworks that are to be adhered to.

Last year in Queensland and South Australia, a company decided they wanted to give a different way of doing things a try, they totally changed their recruitment process with a view to getting some autistic people into jobs with them. The company runs piggeries, and so is not the old stereotype of autistic IT nerds sitting in front of PC’s coding away. An alternative application process was devised. Potential applicants spent some time at the piggery and both potential employee and employer got to see how each other was, in effect an extended trial. Both employee and employer got the opportunity to work out if the situation was one that would be of benefit to them both. At the end of the trial, the majority of these autistic individuals were employed. A very wonderful outcome that impacts the lives of a bunch of autistic people in inimaginably positive ways, and at the same time provides value, productivity and so forth for the organisation they have been employed by.

There have been a few different organisations in the media in recent times, how they are getting jobs for autistic people in programs, but overwhelmingly these programs have been firmly and squarely centred within the IT industries. Organisations like SAP and HP should be greatly applauded for being involved in these programs. It is a good thing. It is though, a drop in the ocean.

The organisations that have contracted with these IT giants, need to think more broadly than just IT. That we autistics are all IT experts is one of the most pervasively incorrect stereotypes that persist about us as autistic people. Just like allistic people we are as diverse as the day is long.

We are artists, writers, tradespeople, drivers, managers and anything else you care to name. Yes negotiating the world of recruitment has challenges for us, and given the statistics of our workforce participation, we are not managing these challenges well at all.

When we fail to meet these challenges successfully we miss out, we are often forced into entrenched poverty. But it’s not only us that miss out, it’s the rest of the world that misses out on sharing our lives, our contributions, our expertise and the gift we bring by just being human colleagues and friends.

The statistics are damning, very damning, autistic people are here, wanting to work, ready to work, and are a source of great potential success for businesses that take a chance and give us a shot.

This is important, because, time and again it is shown that we will fail along the typical recruitment journey, but also time and again it has been shown when an alternate path is provided that we can in fact do the job, deliver the productivity and skills that an organisation is looking for.

Doing recruitment differently is not just about making it easier for us autistics to get a job, though it is certainly that, but is just as much about making businesses more productive better businesses delivering better service and products to their customers, and therefore being more successful.

If we do it a bit differently, think outside the box, both autistic people, and the companies that recruit them will benefit greatly.

The question of course, and yes it’s the big question, the elephant in the room if you will, are organisations, recruitment departments brave enough to try, to give it a go, to test the water.

I hope they are, because things have got to change. I spent too long in unemployment, and I have too many autistic friends still in that position still. For as long as it goes on the gift to the world that we can give is thwarted. It’s time to change that.

I wonder if business has the courage to try.

Autistic space – it might be magic.

The majority of the world is not autistic space. From shopping centres to court rooms, from school playgrounds to classrooms, from office buildings to cinemas most of the world that humans inhabit could not be considered autistic space.

The world at large caters for and therefore creates spaces that are tolerable, palatable, and preferred by those of the non autistic neurological state of being. A generalisation, for sure, but it has a fair degree of truth to it.

My journey through life has most certainly been a varied one, it has contained many twists and turns, which, I would never have predicted, and yet here I am, sitting in a local cafe, typing words that for some people have meaning, for some people, have beauty, but for me, are somehow just a part of me, a part of me that flows out, that I hope has something to say to those they reach.

Life is full of moments. Some of those moments are incredibly instructive. Some are just moments that pass by without consequence, some are moments that we need to grasp hold of and turn them into moments of significance that can spark change, or at least that you hope will spark change. And some moments, are so instructive, so influential, so life-changing they can’t just be allowed to roll on past, it’s not possible to miss them, you don’t need to grasp on to them and turn them into significant catalysts for something special they just are.

As a late to diagnosis autistic adult, most of the moments of life for me, were encountered with a frosted over view, an attempt at making sense of them through a lens that was undoubtedly autistic, but which I had been trying to make non autistic. Another way of saying, I guess, that I was a great pretender. It wasn’t really until my late 30’s that I truly started to investigate the idea that I might be autistic. I talked with people, I read stuff, I did online tests. I eventually came to the conclusion that it was pretty likely that I was in fact autistic, I had taken a step towards identifying and accepting that reality.

Of course there were faltering along the way, times of denial, of internal ableism about my own neurology. By this time I already had two officially diagnosed children, and I was absolutely of the attitude when it came to supporting them that they were different not less and those that worked with them, for them etc, must see that, they must get along side my beautiful daughters and seek to understand where they were coming from, they must do this because everything they did, or didn’t do, if you got alongside them made sense to them, it had logical coherence when it was considered from their perspective.

Then came the next step for me, which was moving beyond self identifying and onward to an official identification against the official criteria interpreted by someone with the official skills to do so. To be clear, I have no issue at all for people who self identify themselves as autistic, if this is done, in such a way they have vigorously asked the questions of themselves and considered what the literature says. There is no issue for me with self-identification, provided that identification is not a whim and is vigorously considered.

For me, I second guessed my own interpretations, I self-doubted my own insight into myself, I doubted even my partners clear belief that my own thoughts were correct. In short, I couldn’t trust my own self identification process and required some confirmation.

So what does this all have to do with autistic space?

Well quite a lot if you bear with me. After a period of denial and feeling sad and sorry for myself upon receiving my official identification, I became able to accept my autisticness. It was as if, I flicked a switch and suddenly, accepting that this reality of my neurological way of being was ok, and not broken, not wrong, not to be fixed. I had spent a number of months in a sense of personal dissonance, in that, whilst I had been Pro neurodiversity with my children, I had not been with myself.

Once I flicked that switch internally and moved into acceptance, suddenly, almost instantly it was as if a veil, a cloud, a thick fog, a pair of glasses with frosted glass had been removed. Suddenly so many things became clear. So many things, it is quite difficult to even make a list of just how many.

Why it was, I found it so hard to make friends, why it was that I had not been able to make employment work successfully, how it was that anxiety had played such a role. Even things like understanding how I could be in an environment and suddenly, without any sense of knowing why, but I would become overwhelmed to the point I needed to drop everything and get out.

A new understanding of why I would be often interpreted as being negative or critical when in my mind all I was doing was being accurate or factual.

So many things, suddenly clicked into place in my internal consciousness and I was no longer broken, useless, somehow wrong but simply I was different to the majority of those around me.

Coming into the light of these realisations was only the first step. Connecting with others and discovering autistic space is like that realisation to the nth power. Autistic space can happen in a range of ways, in online spaces and offline spaces.

The first time one experiences autistic space is transformative.

I have had the privilege of being a part of both experiencing that first time myself, and I have been privileged to see others experience it for the first time themselves. It is a thing of wonder. It is a thing of joy. It is a thing of transformation, self-acceptance, I would almost go as far as to say enlightening.

It really is a space where the magic can happen. Where autistic people ignite a spark within them of self-belief, self-acceptance, and, begin to change the way in which they see themselves and their potential and value in their place in the world they inhabit.

It does need to be said, though, that a big conference with a quiet room and some autistic speakers, is not autistic space. Even when those things are done with respect and concern to make autistic people feel comfortable and that their sensory needs are considered. That is not autistic space, it is autistic friendly space but it is not autistic space.

Autistic space happens, when a space is created that not only accepts autistic needs but incorporates them in such a way that an autistic person does not feel compelled to conform to non autistic norms, if you like, to put on an non autistic mask.

Autistic space happens when the autistic way of being is the norm of the space. Where it is safe to express your autisticness without fear of negative reaction and consequence from the non autistic members of the space.

Autistic space happens when either autistic or non autistic people create such a space. You know it is autistic space you are in. It’s not necessarily something you can explain but you feel it, and you feel it somehow to the very core of your being.

I recall the moment I knew I was in autistic space, real autistic space for the very first time. I was engaging in something of a monologue, and for what felt like the very first time ever, I experienced a sense that my tribe were with me, listening to my words, not interjecting to fill the moments of silence, almost hanging on the words that fell from my lips. Suddenly, my need to constantly check myself, to consider if I was going on about something and boring the hell out of them was redundant. I looked around the room to see my tribe nodding, to see faces that understood and empathised with my experience. Most of all, I felt safe, free and able to be the person I really was, and not just the public face I showed to the world.

Autistic space is that place, where, the autistic person is free to be the person they are. It’s that place where as an autistic, you feel the power of connection to your tribe, where it matters not, if you are a newly identified member of the autistic tribe, or a senior statesperson of that tribe. You are safe, accepted and celebrated, you are included and valued in a special and magical way that many of us, don’t experience in any other places we inhabit.

Yes, autistic space, it’s where the magic can happen, where autistics can be their best, where non autistics are welcome guests and contributors and because of this space, non autistics can gain an insight into the autistic experience that is not possible through interviews, surveys, therapy sessions, parent meetings or whatever.

Yes AUtistic space. It’s where the magic happens.

Autistic Pride Day.

It’s June 18 and right in the middle of LGBTQQIA+ month we have another special day. It’s autistic pride day. It’s important. We autistic people use this day to proclaim Pride. Pride not in that we have what is deemed a condition outlined in the bible of mental health conditions the DSM, but, in who we are as human persons.

Autistic Pride day, is a day we reclaim the word Autistic from being something that has negative connotations, we reclaim it is an identity. This is of course, extremely wrapped up in our belief we are in fact not broken, not sick, not wrong, not disordered but simply we are different not less.

Autistic Pride day, stands out in contrast to the pathology bound negative campaigns of Autism Awareness campaigns of April. Where people light up blue to raise awareness about us, because in their view there is something inherently wrong and broken about us. We are such a broken and terrible representation of humanity that people must be aware.

April is for many autistic people a month of horror. Due to our differences in social communication many of us maintain a lot of our connections via social media connections, and we are throughout April confronted continuously with ads and posts about being aware of us, Bewareness campaigns abound.

Thanks to the algorithms social media sites run our feeds are full of this type of post, we simply can’t escape it. Well, we can, by essentially cutting ourselves of of social media for the month, yet, even then, the print media, the television media, are rampant with stories about autism and how terrible it is.

April is a fresh level of hell for many a proud autistic person, and it feels like it lasts for a year. I couldn’t count the number of times I saw a post from an autistic friend asking ‘is April over yet?’

Autistic Pride day, stands in contrast to all of this. It’s where we declare ourselves just as complete and fully human as a allistic person is. It’s when we declare no we don’t have something, autistic is who and what we are.

We are proud, because yes we are different, but we are proud, because we understand why we are different, and that it is perfectly ok. This is not to pretend that we don’t have our own struggles, we do. It’s not to say our life is perfect, it isn’t. But that doesn’t detract from the reality that we are proud to be fully human autistic people just like others are proud to be fully allistic human people.

We claim the autistic moniker with pride, it provides us with answers, insight and understanding about ourselves, our relationships and interactions with others, and how and why life has often been something of an incomprehensible maze to negotiate, particularly prior to receiving a diagnosis.

Autistic Pride Day, it reminds us of all those ah ha moments we have been able to have since diagnosis. It’s a day we can reflect back and realise and understand why some things went wrong, or why we responded to situations in ways we did.

Throughout the year, we are autistic people are bombarded with a narrative around autism that is inherently negative. It is focused on causes and cures. It is impregnated with a sense of parents as martyrs just for parenting us. It is a narrative that is spoken, mostly, by non autistic voices talking about autism, as experts and consultants, and diagnosticians, and therapists and so on. They speak like they know what it is actually like when they in fact have, in most situations, zero lived experience of being autistic.

Throughout the year, a community of parents, who label themselves Autismmom and AutismDad post relentlessly to social media about how terrible it is to have an autistic child, they video their kids in distress and post it to facebook and YouTube and hope it goes viral.

The light relief to the horror of these autism parent communities is that whilst they claim their autismmommy title with claim they react with horror if you call their child autistic. No they’re not autistic they have autism, autism doesn’t define them, they are more than their autism.

Well duh. In a sense this is right, I’m left handed, but I am more than my left-handedness, I am a transgender lesbian woman, and I am more than my transness and lesbianness. I’m a runner, but I am more than just a runner.

And yet, autism does define us. It does so, because everything about me, my relationships, my work, my writing, my communication, my thoughts, my feelings, my everything is through a filter of being autistic.

I suppose it is like a filter that permeates everything I do, think, say and feel. It is not something I can put down. I don’t carry it around in a bag with me and so in a very real sense, yes I am defined by my autism.

It’s Autistic Pride Day, and it is with Pride that I proclaim myself Autistic. It is with Pride that I say I am different not less. It is pride that I say nothing about us without us. It’s autistic pride day and yes I am proud.

Because, for something like 40 years of my life I did believe I was broken, I walked this journey of life in a state of believing I was somehow wrong, broken, a failure and never able to amount to anything. I spent my time never understanding why it was that I always said the wrong thing, was the last one to pick up on the social cues in a situation, why it was I always got the social interaction so wrong that I ruined relationships.

Autistic Pride day, it allows me to say, no to all of that and to reclaim my life, all of it, my past, my present and my future as an autistic person and not a broken wrecked and doomed to fail person.

Autistic Pride Day, it exists, because we are proud.

Autistic Pride Day, we are proud because we are human just like you.

Autistic Pride Day, because:

We are Different Not Less!

Functioning Labels – What are they good for.

Autistic people are described by functioning labels all the time. They are used by clinicians as short hand, they are used by parents to make things sound better or worse to others, they are used by diagnosticians to try to be more palatable when giving a parent a diagnosis.

The question I ask is What are they good for – cue the music – absolutely nothing.

Well not exactly nothing. I mean it is actually true that the diagnosis of autism is itself a functioning label. As an autistic person I know it is actually a lot more than that. I know with a surety that it is the way I am wired, the way my brain works, the way I think, feel, experience and do life. But the fact remains the diagnosis of autism is the observation and interpretation of functioning and behaviour.

So I think, there’s my answer. Functioning labels what are they good for? – A diagnosis, maybe some funding, perhaps access to some services.

If that’s true, that a label can provide such access then functioning labels good right. Well, yes, but no.

Just one functioning label. The word autism. That’s it. Nothing further is required.

There’s a real reason for this. Autistic function is not static. It changes. And it changes all the time. Not just year to year, not just month to month or week to week, but it can change moment to moment and second to second.

With this being a thing to try to box a person up with a functioning label is just simply a false thing to do. Not only that it treats a person, a human being, as if they were just something to be described, to be assigned a particular label and not treated with dignity respect and not given the same access to basic human rights all human persons are entitled to.

Functioning labels other us. Functioning labels silence us. They are used to say what we can and can’t do. They are used to ascribe a sense of permanence of what we will and won’t achieve in life.

Quite frankly, they are just bullshit.

And the really crazy part of all this, the most common functioning labels we are saddled with, Low Functioning and High Functioning. Well, they aren’t now and never have been diagnostic terms or labels described in the official diagnostic manual the DSM, currently DSM5.

Sometime in the history of diagnosing autism, clinicians seem to have got the idea that calling a child high functioning was kinder or more palatable to the parents. It’s easy to see why that might seem to be the case. But it is of no benefit to the autistic person at all.

In a cruel twist of circumstance, the difference between these two labels has come to mean, in the minds of many, whether or not one has the ability to speak with their mouth parts. To that we must call bullshit.

If the ability to speak with one’s mouth parts, is an indicator of functioning level then quick, someone better go tell Stephen Hawking.

Another cruel twist of circumstance has meant those labelled with low functioning, because of this lack of speech with their mouth, have also been assumed to not amount to anything, treated as if they are a non-person and have their human rights ignored and breached on a constant basis.

This must stop.

When it comes down to the essence. Functioning Labels are not to the benefit of the person to whom they are applied. They are to the benefit of those around them, their parents, therapists, diagnosticians and so forth.

In terms of the autistic person, beyond diagnosis, they are good for essentially absolutely nothin.