I get out of shape over labels

Labels don’t matter. I don’t want them to be defined by the label. Labels, labels, labels. They really are everywhere we turn. We put them on everything. Whether it is our food our clothes our whatever it’s on everything. They are at times important, or at times they are not. Some of them are worth getting bent out of shape over and some of them just do not matter at all.

One of my interests is running and my favourite type of running is trail running. When it comes to running there are lots of labels, any sport this is true I guess. What brand are your shoes, what brand is your shirt, your shorts. It’s a long way from Dunlop volleys and cotton singlet tops. Mostly these labels are irrelevant except for the status and prestige factor. Sometimes though the go to label, the brand of choice is warranted. The Salomon label in the trail running community are very highly regarded. They produce what are without doubt the best running packs for carrying gear, food and hydration. They are costly and they are highly wanted. For quite some time I thought they were overpriced and couldn’t be that much better than all the others, then I bought one on sale, and was immediately convinced of just how much better than the alternative matters.

When it comes to trail running a Salomon Labelled running pack is worth getting out of shape over.

But these are not the labels I am so much thinking about. You may have noticed if you have read this blog that I am pretty passionate about the labels used in terms of Autism, that I believe language matters. I speak to it often. I think it’s important. It is important, it’s worth getting bent out of shape about because words have power.

Many would recall the old rhyme of

sticks and stones may break my bones but names will never hurt me.

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And I am sure many can relate to just how untrue that is.

Yes words are worth getting bent out of shape over. After spending most of my life undiagnosed autistic I have experienced a lot of unkind and unhelpful labels imposed upon me. Bullying and teasing was something of an everyday experience growing up. I received so many labels that were not of my choosing and was unable to assert an labels of which I chose to impose upon myself.

There is much about Identity First language and Person First Language in the Autism community. Recently I was asked why it is so

important to me, another person said they never wanted to limit their child by the label autistic, they didn’t want them to be defined or typecast by it. I am pretty convinced that my reasoning is tied up in a response to both of these things.

The first being the importance, well it’s important because it is a label that I impose myself on myself, it is a label that equates with an understanding of my identity, my neurology and my state of being. For the first time it is a label I can wear happily knowing it fits rather than others.

In terms of the second, I can concur with the ideal of what this parent was saying, however in the end, I think it is naïvety to imagine that autistic kids who are not labelled as such are not labelled negatively by those around them. Yes labels define but definitions are never total and comprehensive. They attempt to describe and make meaning of things and this is true whether that be a negative, positive or neutral label.

The child that is not labelled as autistic will certainly have other labels such as ‘weirdo’, ‘freakish’, ‘loner’ etc applied to them. Whilst it is unlikely that these labels will forever be wiped out of existence what is certainly a fact is that they most often are spoken out of ignorance of a situation. I believe, and I have seen, that children that have been given some understanding about autism are much more able to understand and accept their autistic peers, indeed able to genuinely form friendships with them and in these situation it is far less likely these autistic kids will be labelled with those negative labels. Not impossible of course but less likely. The converse is also true, when kids don’t know that a peer is autistic they won’t have an understanding of them and why they are the way they are and be more likely to have those negative labels imposed upon them.

Surely, this understanding can enable these autistic kids, and adults too of course, to focus on their strengths instead of weaknesses. This I believe will have flow on implications where their skills and abilities are recognised and valued by their peers.

Some labels are worth getting bent out of shape over. Absolutely they are!

Just need that alone time…

Yes I need it. Everyone needs it, let’s be totally honest about. We all do in some form or another. Whether we are autistic or allistic, introvert or extrovert there are times that we just need to have that alone time. To recharge, to take stock, to work out what is happening, to get in touch with our emotional responses, or our feelings. It is an essential factor of human nature I think. I imagine way back when we were hunter

gatherers we got plenty of that time.

The modern world we inhabit now though, the way it runs, the seductive way it is all-encompassing of our time, our thoughts our everything makes that alone time harder to get, harder to carve out of our busy schedules. Even our nothing time is taken up catching up on Facebook, or Twitter, or checking email, or watching Youtube or whatever it is. We sit in restaurants staring not into the eyes of the one we are with but into the brightly lit screen of our smart phone, tablet or laptop.

It is almost as if the technology we have created, much of it to supposedly provide us with more efficiency and therefore more leisure time, demands our every waking moment. Even many of our sleeping moments. How many do you know that sleep with their phone or tablet or laptop next to their beds. I for one am guilty as charged.

So we all just need that alone time…

For some it is more essential than for others. I know for me it is imperative that I get it. If I don’t get that time I struggle more with executive function, socializing, and just getting through the day. Which then snowballs into needing that alone time even more so than I already did. It’s one of those cycle things, or spirals. And for me that spiral does not end with anything good. It ends with shutdown or meltdown, incapacity to function for a period of time. A burden on my family and a failure to fulfil my role adequately as a father and a friend.

I noticed this week a fresh just how much for me sensory input can impact upon me beginning that spiral towards that end. I had a day the other day where I had been exposed to a large amount of time in sound intensive environments. Not so much loud, as loud is not normally a big issue for me from a sensory point of view. It is rather the multiplicity of different sources of noise, particularly similar but slightly different sources. Being in a public space with multiple conversations. Attempting to focus and having conversations going on around me. These are incredibly difficult things for me and impact me greatly.

The impact is not sudden, well it is kind of sudden, I don’t so much notice it until it builds, then suddenly it has built to an almost desperate point before I realise it. A big trigger for me can be particular smells, an absolutely difficult one for me to manage is the smell of mint. In the midst of the rising trigger of noise issues was the smell of mint permeating my consciousness. I knew I had to get out of there. I managed to do it with minimal fuss.

It seemed I had dodged a bullet as it were. Unfortunately on my return home after managing through dinner with a very excitable and noisy 9-year-old, I discovered as I walked into the bathroom an overpowering smell of mint where one of my children had used a minty toothpaste and done a poor job of rinsing the bathroom sink.

I exited that bathroom at a rate of knots with my gut dry retching itself. I escaped to my cave, my bedroom, it was all I could do.

What a day it had been. The sensory input and impact was huge, I was on the verge. I could feel it, shutdown was coming, it may be unavoidable now.

But, it was a new thing for me to recognise it. Normally I only see it when it is too late, or I am already in the middle of it and all I can do is ride it out. I am thankful that I saw it this time.

I was able to say to my family, shutdown is coming. I just need my alone time, I need to recover, or I am going to be pretty useless to anyone for an unspecified amount of time.

A huge shout out to my family on this one. They were wise enough, loving enough, wonderful enough and compassionate enough to see that I was not joking, this was a real thing here and they left me to it. So off I went. My my room, my weighted blanket.

Yes I just needed my alone time.

Shutdown averted. I feel pretty proud of that fact. Pretty thankful to all that I have learned and the family that surrounds me.

Yes we do all need our alone time, but sometimes for us autistics it is just that much more needed than other times. Perhaps for everyone too.

Just too hard to take…

I’m confused,

Stupefied, dismayed, surprised, unable to comprehend, the sheer arrogance, ableism, and self aggrandisement that is present in some. The some I refer to are those parents, carers, siblings, whatever, of autistic people who are convinced they know more about autism than anyone on the planet, more than the professionals, more than the researchers, more than the therapists, more than the paediatricians, more than the psychologists and psychiatrists and most astoundingly more than the actually autistics themselves. To be perfectly honest I just don’t get it.

To be perfectly clear, I am not talking about the carers, parents and family who embrace neurodiversity, are totally accepting of their autistic loved ones and have the aim of ensuring that their autistic loved ones do not have their voices silenced, are not seen as burdens, are not seen to be lost and locked away. They do in short, fully accept their autistic loved ones for who they are and what they dream and seek to be.

But yes honestly I just don’t get it. I just does not add up, and it makes no logical sense at all. Excluding being actually autistic and living neurodivergent for your entire life, or having a career in a professional capacity of assisting autistic people, how can one possibly have the sense of grandiose to actually believe they are better equipped to speak for, make decisions for and pronounce right and wrong about the life, the well-being, the future and the possible therapies for the autistic person.

This is not a question of how well you know your child or loved one, the assumption here is that you do. But you do not know them and their life better than they know themselves, and you really don’t know more about autism than what the professionals do. It really is that simple, yes absolutely you know and love your loved ones to the end of the earth and back. But no if you are not autistic then you are not autistic and as difficult as this may be to hear you do not have the lived experience with autism to be making statements about what is right and wrong that an actually autistic person does.

That there is another thing. If you are not autistic you are not living with autism. There I’ve said it. It’s a truth. The only way to live with autism

is to be autistic. What you are doing is living with someone who is living with autism. It may sound like splitting hairs but it is not. It is far more than a simple playing with words.

I implore you to hear this. If an autistic asks to be heard about issues that effect them, listen, please. It is most likely they have more insight into the situation than you do. It comes with having the lived experience. So please take heed, and understand:

If I choose to identify as autistic respect it, don’t tell me it’s wrong or offensive or I should use person first language. Or perhaps you would prefer to be called a person with neurotypicality?
If I choose to say I am proudly autistic, don’t tell me it’s nothing to be proud of. It’s my choice to be proud of what I want to be proud of.
If an autistic says they are overloaded, or not coping, or need to get out RESPECT that, and don’t please, never, call on them to just suck it up and it will be okay. It most likely won’t.
Don’t pay lip service to sensory issues. They are real and they are debilitating.
Don’t disregard the voice of autistics and the insight they might have into what may be going on for your child on the basis of them not speaking for your child. Of course we don’t speak for your child. We do however know what it’s like to be autistic, you do not. As much as you love your child, as much as you know your child, you simply can’t, it’s just not possible, to have autistic lived experience unless you are autistic.
If you think the actually autistic adult is too high functioning to understand your child, banish that thought to hell, it is misinformed, wrong, and totally unhelpful and highly offensive to the autistic person that has taken the time to actually try to speak with you and attempt to help you be the best you can be for your autistic child.

There are a few items there, not many. And yes this has been a somewhat angry post. Somewhat of a rant today. Yes. I accept that, and yes I am prepared to be taken to task possibly. Unfortunately it has been prompted by seeing autistic friends being told they are wrong about how everything autistic in a very unkind and hurtful way by a so-called autism mom. Not just told they were wrong but ridiculed and defamed.

I still just don’t get it. How it is that these people, who claim to love and want the best for their autistic children feel it is reasonable, acceptable, or okay to disregard, treat unkindly and attempt to silence the voices of actually autistic adults.

An amusing thought to finish with. I would like to credit it but I can’t for the life of me recall whose comment it was, but here goes. How is it that so often those who take autistics to task about Identity First Language and insist on Person First Language when referring to their children so proudly label themselves as ‘Autism Moms’! Go Figure!

Not what you signed up for… well what did you sign up for anyway?

Well what did you sign up for?

Following on somewhat from yesterdays post There’s this thing, I came across a petition today on Change.org, as petitions go this one has some merit. The call is for a podcast to be removed and an apology. You can check it out the transcript from the podcast here. The

petition is here.

If you take the time to read the transcript you will discover that it is essentially an interview with a mother of two autistic young men who is taking the opportunity to complain and moan about how tough her life is. This one is particularly offensive to autistics, with statements talking about how she would rather have not had children, encouraging others to not have children, and the morning of the boys she never have. It’s completely and utterly anti-autistic, negativity that is not necessary, uncalled for, inaccurate and of course highly offensive.

There are a few themes that run through the interview from start to finish, and these themes are very much parent centric with no insight into the actual autistic boys that are being talked about. No respect for their rights to dignity, respect and self-determination. To the point that this mother presents for all listeners a recording of what appears to be one of her boys mid meltdown. It’s terrible. The most dominant theme running through is how terrible it is to be an autism parent.

This mother bemoans how terrible it was to discover that their first child was autistic. Shock horror the young fellow didn’t have speech, or as she puts it lost speech at around 18 months of age. Then is the bemoaning of already being pregnant with the next child, and how that’s ok because they will be able to be a role model, whatever that means, to the first child. Shock horror again the second child had no speech either. So this poor woman is apparently cursed.

The remainder of the interview is littered with references to not being able to work because it’s so tough being an autism parent, of having to give up on the idea of being a real parent, of being un able to go on holidays, to be unable to travel, to be unable to do this that and the other. It is very much all about the mother and absolutely nothing about the two actually autistic children involved.

Where the children are mentioned, they are mentioned in light of how terrible their behaviour is, even to the point that they are labelled as the lunatic. I don’t understand how one can refer to their own child in such a way.

Discussion of how it was so difficult to get services to fix them. I’m sorry but they are not broken and they do not need fixing. They need accepting and encouraging to be their very best. To believe they can achieve and to be supported to do so.

The mother talks about the father discussing at some point how he could have been such a good dad and now he can’t. He could have ensured they were well-educated sensitive, etc. Sorry sir, but there is nothing stopping you from still doing that.

I think i’ve made my point, that this is not about autistics but all about the parents. I don’t want to spend this whole post as a parent bash, that’s not my intention at all. The thing I do want to get across though is that just because the children you bear are autistic and not allistic this doesn’t make them less, it doesn’t mean the world has ended, and it certainly does not mean you need to mourn the child you never had.

That whole idea of mourning the child you never had is an idiocy in itself. How do you mourn something you never had, how do you mourn for a child you never knew. The act of mourning is about losing someone who you knew, who was close to you. You can’t do that for someone who never existed. It’s nothing more than self-indulgence in my opinion.

To be clear, parenting an autistic child has its own unique challenges. It also has its own unique joys and wonders. Just like parenting any child does. Parenting any child has challenges. It’s not a walk in the park for anybody, there is always challenges and joys, failings and wonders. Parenting is hard work for neurodiverse and neurotypical children and parents.

Imagine being one of those autistic boys and to hear your mother talking about you the way this mother has talked about them.

The whole premise of autism as something bad, something less, something disordered and sick is what has given rise to a narrative and feeling in the community about autism that allows for the rise of these kinds of podcasts, for the many mommyblogs out there devoted to bemoaning the catastrophe of being an autism parent. It has given rise to the so-called warrior mom fighting against autism.

I have declared previously that we don’t need any warrior mommies. Well maybe I was wrong about that. In fact, yes we do need some warrior moms and some warrior dads and some warrior siblings, some warrior teachers, some warrior doctors, some warrior aunt and uncles. You get the picture. Warriors are needed. Warrior to fight against…

To fight against autism? NO NEVER.

To fight for autistics, to fight for acceptance, to fight for inclusion, to fight for success.

To fight against, negativity, to fight against bullying, to fight against cure culture and dog training therapies.

Yes we do need warriors. We need warriors to fight for us to join the cause for full acceptance and inclusion.

To those that consider themselves warriors against autism, please I implore you, please stop fighting against the essence of who your children are and turn and fight for your children to be accepted and included, to be safe from bullying and abusive treatments at the hands of so-called helpers.

The true fight is the fight for acceptance. There is no cure to fight for to search for, there never will be. You can be aware all you like, but until acceptance goes with that awareness then that awareness does nothing for the autistic community.

There’s this thing….

There’s this thing. This thing that wherever you turn you hear negativity. You hear about disorder, disease, need for a cure. You hear of catastrophe and epidemic, you hear of devastation and holocaust. As if there is a genocide at work. You hear so many things. Anyone would think this thing was something that was going to kill someone. But it isn’t.

You see books written by parents bemoaning their lives with the thing. You see pseudo science promoting their homeopathic quackery to “recover” people from the thing. You see parents declaring themselves warriors against the thing. Doctors declaring they can cure the thing with controversial treatments.

Groups of Dr’s join together to vowing to defeat the thing. Former movie stars declare they know all about the thing and they know what causes the thing and start foundations to defeat the thing. Mothers get caught up in cults with so-called miracle solutions and protocols that will recover their kids from the thing. They write books declaring the thing isn’t actually real but just a combinations of symptoms.

Fathers write books about the thing. Declaring they wished their kids had cancer and not the thing. They sell them on Amazon. Just to repeat, yes, they would rather that their children had cancer than the thing. The thing that won’t kill them, yes, they would rather their children had cancer, a thing that may well kill them. Than the thing they are that won’t kill them. Unconscionable but true.

Here’s the thing. The thing isn’t a thing. It’s far more than a thing, it’s an everything. That is it pervades everything, it’s part of everything. It impacts everything, It’s much more a way of being, a neurological wiring that makes one the person they are. Yes, you’ve probably guessed that the thing is Autism. Yes, it’s an everything.

It is not an epidemic, a holocaust or a catastrophe.

It is not something to be cured, or to recover people for.

It is not worse than Cancer, Lupus, Degenerative Diseases or any other life threatening illness or disorder.

It is not a tragedy. It needs no defeating and it calls on no warriors.

And here’s another thing. If it wasn’t for the autism, that friend, that person, that child, that cousin or that you, wouldn’t be the person they are. “The Autism” as it’s so-called is what makes that person that person. Extract autism, heal or cure or recover from autism and that person

ceases to exist.

And here’s the real thing. There is actually nothing to recover from, there is nothing to cure, there is nothing to defeat.

Autistic people are just that, autistic people. No they are not sick, diseased, disordered or doomed to a fate worse than death. They are real living breathing people.

We are real living breathing people and we being those real living breathing people are as entitled to full and productive lives just as real living breathing non autistic people are.

There’s a saying Autistic rights are human rights. It’s a truism. It needs declaring, and it needs to continue to be declared for as long there are people like Kerri Rivera spreading her hate. For as long as there is Jenny McCarthy spinning her lies, for as long as there are people spreading the fraud of Vaccine Induced Autism, for as long as there are members of Defeat Autism Now, for as long as vulnerable people feel the need to subject their children, both young and adult children to bleach treatments, chelation and the like. It needs declaring.

Yes Autistic people are human people. Yes we are not less than any other human.

We are Perfectly Imperfect just like every other human person that walks this earth.

We are as we are, neurologically different not neurologically less. We declare nothing about us without us. That means not being subjected to treatments we don’t agree with, it means not having decisions made about us that we have no part or say in. It means we demand the same rights as the non autistic. It means we declare the same human rights as the non autistic.

It is true now and it always has been and it always will be that autistic people walk among the non autistic. It is also true that we the autistic are different not less.

Autistic Rights are Human Rights. We are as everyone is, perfectly imperfect.

It’s called a special Interest…

It’s been something of a lack of motivation to write over the last several days. The inspiration has been lacking even though there have been some important events taking place. Autism Speaks have made a start in appointing a couple of Autistic people to their board. There has

been quite some anger over the Australian AEIOU foundation in their handling of allegations of children being abused in their centres. Perhaps it’s been a bit of a mini shutdown, not having the motivation and energy and inspiration to rise up and write about these things. I have been very tired, and seemingly unable to muster the energy to get my head and heart into the actual task of writing.

During this time I have been thinking a little about special interests. Often they’re called obsession. I rankle with such a description, it makes me cringe, and somewhat annoyed. To my thinking an obsession is more than what a special interest is. It’s something you can’t help. Where as a special interest is something you can help but you are intensely interested in it.

a persistent idea or impulse that continually forces itsway into consciousness, often associated with anxiety and mental illness — www.dictionary.com

So an obsession is continually forcing its way into consciousness, whereas, in my opinion, special interest is so often in the consciousness because it is wanted there. The person involved is actually interested intensely not forced to consider it. I think this is a significant difference not just a playing with words.

I’ve had a few special interests over the years of my life. Some have been persistent and some short-lived. They are really wonderful and have taken me to wonderful achievements, or great learning.

As a thirteen year old I became interested in computers. This was quite some years ago, in the days before Macintosh’s existed and I think before Windows was even a thing. Home Computers were not a common thing, but if they were they tended to carry names on them like Apple ][ Europlus, Microbee, RadioShack TRS80, Texas Instruments TI…, Commodore Vic20 and Commodore 64. It was the time of BASIC

and terrible games. Colour was something of a luxury oftentimes.

In the Christmas of 1983 I received a Commodore 64 for Christmas. It had no hard drive and 64KB of RAM. Programs were loaded on a tape drive and the display was an old Rank Arena 32cm Portable TV. Load Error was a common cause of much frustration. I spent a lot of time teaching myself the ins and outs of the BASIC Computer Language. At the time a feature of the Commodore was the introduction of Spirtes- Floating graphic images that could be sent bouncing around the screen. An achievement for me was spending hours with pen and graph paper and writing a program that created a new font or character set. For memory each character required the coding of 8 lines of data each 8 bits long. I was very pleased with myself when I created the full character set. Saved of course, to cassette tape via the cassette drive. In order to use the font of course it had to be loaded by tape into memory once the system was booted.

Those were certainly the days.

A persistent special interest for me has been distance running. I discovered this interest as a primary school student when I did well in the compulsory school cross-country. This led me to begin Little Athletics for a season in Grade 6, where I did quite well in the 400, 800 and 1500 metre events. This led me to take up running more with some others in High School, where I would run with some other students and a few interested teachers after school. We would run somewhere between 8 and 12 km each afternoon. It was at the time one of the very few activities at School that did not involve being bullied.

I lost interest in running for quite some time, until I was in my mid 30’s in fact. But in the 10 years since it became a renewed special interest I have achieved some wonderful things. I have run 5k in less than 20 minutes, 10k in less than 43 minutes, completed a number of Marathons and Ultra Marathons. And, more importantly made some great friends. At times family and friends would consider me obsessed, at one point I had run 130 odd consecutive days without a break. But the thing is it wasn’t that I had to run, it was that I wanted to run. So a special interest not an obsession.

Recently this interest has been in a hiatus, in fact I have allowed myself to lose all that fitness. It is not of course a discarded interest, it’s something I think of fondly most days and think seriously of re-igniting that interest and aim at some new wonderful achievements.

My Computer interest has been one that has also ebbed and flowed over the years. In my 20’s in the early to mid 90’s in the early days of the world wide web I taught myself html so I could make myself a webpage. I sat down with the bare bones guide to HTML and got myself going. Since that time this interest has mostly flowed rather than ebb, I have successfully built some sites, made some blogs for people. I have built and repaired not a few PC’s for myself and friends. It’s certainly been enjoyable, and educational. It has not been a compulsion but a desire.

Currently I am wading through a web developer course and am becoming successful in learning to design and build MySQL databases. Shortly I will move on to PHP and JavaScript to enhance those skills. Again this is an educational and mostly enjoyable and very satisfying interest. Not an obsession but an interest. A special interest.

Special interests are an Autistic Strength not a problem. They are to be celebrated for the achievements they bring rather than bemoaned by family and friends for the high level focus that is involved in them.

That’s right I have special interests, and they are wonderful things.

Yes it’s building

It starts so quietly, almost imperceptibly, almost sneakily. But even now it’s building. Slowly but surely building. From nothing it’s building, from nothing it can become an explosion of pressure, spurting itself out with such speed and intensity it can be likened to a steam escaping from a pressure cooker. Yes, it’s building, ever so quietly, ever so constantly, ever so consistently to the inevitable point of no return.

Meltdown is a completely appropriate term for it. It can conjure an accurate image of the high and low of the event, the high energy raw feelings, thoughts and words spewing out and the low, complete feeling of being utterly spent, feeling like an absolute failure as a human, palpable sense of shame dragging oneself lower and lower. The inevitable ending of escape into self, escape into solitude,

silence and recovery.

It’s building. It’s always building. Without a release valve it keeps on building. It’s building and I’m not sure it can be stopped. It sure can’t be demolished, temporarily halted sure, but stopped in its tracks I am not so sure. It builds from so many different sources. Some clear and obvious sources some not so much. It’s never the same. It’s not the same time and again for an individual and not the same person to person either.

It’s building. Yes, it’s a sensory thing, an anxiety thing, a how grounded you are thing. But building it certainly is. And building it will continue to do. Really the only way to avoid it is to completely isolate oneself, to effectively wrap oneself in cotton wool, never to experience the ebb and flow of living life amongst other people, the ebb and flow of self-care, the ebb and flow of caring for others, the ebb and flow of day-to-day life. So we let it build.

It’s building and all we can do is try to manage it. Try to circumvent its progress, to temporarily derail its progress, to cushion ourselves from its effect.

I reckon every autistic has something different that builds into meltdown. That builds quietly, consistently and constantly to that moment of inevitable eruption. There are tools we use, earplugs, tinted glasses, noise-cancelling headphones, iPods, tables clothing, weighted blankets, weighted clothing. They are invaluable tools to assist in slowing down the building. But still it’s building.

It’s building, no matter where you are, it’s building, it could be in your home but it’s building, it could be the shopping centre and it’s building, it could be in the car and it’s building. It could be the local café and yes it’s building here too. No matter where you go and when you go it’s building.

It’s not a tantrum, it’s not a bad mood, it’s not an anger management problem, it’s none of those things, it’s building, constantly and it’s debilitating when it reaches finality. It doesn’t matter who is around, how it will embarrass those around, these things just don’t come into it. No it’s not like the toddler not getting their way and throwing themselves on the ground. It’s not that, it’s much more primal and

raw than that. But it is something like a raw panic attack, or perhaps something like a psychotic break from reality, in that it is effectively an experience where rationality and control is lost, or at the very least extremely diminished.

Oftentimes escape is the only pressure release valve in my personal experience. Getting out of the situation before actual meltdown occurs. It provides a temporary release valve, a temporary reprieve. But yes, it is still building.

It begins in the home, too many people talking at once, struggling to filter and focus on the conversations that need to be followed. The building has started. A walk through the school yard right on as the bell goes and it continues to build as I struggle to keep my sense of where I am in connection with my physical world as people move en mass in all different directions, parents walking and talking, teachers leading lines of children, unpredictable movement and it’s building. A trip to the local café in search of a quiet cup of coffee and it continues to build as the occupants of the next table speak more loudly and continually than is comfortable, along with a group of people meeting at a larger table talking over one another, as I try to focus on the book I read, it keeps building. The longer I stay the faster it builds.

Yet somehow I find myself seemingly stuck there, unable to muster up the executive skills to realise how much it is building. How quickly it is now building. Now is the time to act, to get out of the place, to escape to solitude and quiet. It is in this situation, at this point that if I do not gather myself enough to get out of the situation that meltdown will occur. Yes it’s building fast and strong now.

What I have described is a picture of how it is for me, it is I am sure different for all, but perhaps there are some similarities. An important thing I have learned is that if I am thwarted from my escape, then a sudden and final building into a meltdown experience is almost inevitable. It will take just one small thing from that point to tip me over that edge.

And tipping over that edge is not a fun thing, it is not an experience I or those around enjoy, and it is not something to just get my own

way in a situation. When I embarrass others I am devastated at that, when I hurt others with my words I am also devastated. I often feel extremely ashamed, and always am utterly exhausted.

Meltdowns are not fun. They are horrible, for the one having the meltdown and the ones around them. Let me assure you, if they could be avoided then they would be.

Meltdowns they don’t just happen the pressure builds to the point of no return.

Meltdowns, they are horrible, I don’t seek absolution from them but I do seek understanding about them.

Yes it’s building. And it will keep building…. and building…

Âûtistic Pride yes here it is.

After a recent post I was taken to task by a reader about the idea of autistic pride. The legitimate question asked was how can one be proud of something they merely inherited. Something they were simply born with. I guess it’s a bit like being proud of your looks, how can you be proud of your looks when you have no choice or control of them. It is not like you have excelled i your career, it is not as if you have produced excellent results on the sporting field. You are just autistic, you were just born that way, you were just wired that way, what’s to be proud of.

Well actually there is lots that an autistic can be proud of. Things like overcoming the negativity of the cure culture, standing tall in proclaiming your difference and that being perfectly ok. Emerging after years of not understanding why you never fit in, why you always felt broken. I think those are things that one can certainly take pride in. I know that pride in emerging out of a sense of wrongness, brokenness

and disease and disorder and into a sense and understanding of acceptance of my neurology and embracing of diversity and difference.

It’s important to note that this Âûtistic pride does not in any way seek to minimise the difficulties that autistics at times have negotiating their way in the non-autistic world, of dealing with comorbid condition. It is also imperative that the message of autistic pride is not a message of arrogance but acceptance. Not for a minute do I seek to elevate myself above neurotypical and allistic people because of my autistic pride. Just as their is a spectrum of infinite difference in the autistic community and no autistic is inherently better than another, so too is their infinite difference in the human community and no human is inherently better than another.

Autistic pride is purely about the celebration and acceptance of difference and diversity, an embrace of the reality of the myriad of different people that inhabit this world.

In order to present to balance my thoughts on this and to give it some fair treatment I have asked for contributions on the issue from the autistic community. The remainder of this post is those voices:

Private Person — Autistic:

Similar to Gay Pride, Autistic Pride/ Proud to be Autistic, places the individual within her/his own relationship to self as a person who no longer accepts the shame/embarrassment projected upon them by ignorant cruelty in the mainstream population. By sloughing off this shame/embarrassment through deliberate celebration of our intrinsic identity we as autistics claim , not only our self esteem, but our right to acknowledgement and acceptance and hopefully accommodation within fabric of society.

Erin Roundy — Autistic Adult

I have come to realize who are my heroes. So many of us have gone much of our lives confused about why we have differences and once we found out we are autistic, began a journey of revelation and a online opportunity to connect with people worldwide who really get us. This is huge & life changing when sometimes we have faced denial and discouragement from people close in our lives, or some of us feel we have no one. For some of us it may have been the best moment to realize we have answers and people to finally relate to, yet we soon realized that this is not going to be an easy road. Much of our lives we may have gone believing we were less than for being different, and society perpetuating that. We start to see that this has to become more than our own revelation. Disclosure often requires exhausting explanation and education to people who have been engrained with societies labels, rhetoric, and even well intentioned observers determine what we deal with and assume what we need. It really takes great efforts to to dispel misinformation and inform people they have been misunderstanding us. I have started into advocacy, not because I imagined it is what I wanted to always do, but because I find it is necessary and needed and I have a passion to stand up with my fellow autistics and say this is not right and we must do something to affect change! This is not easy for people who face challenges such as shutdowns, meltdowns, sensory overload, social anxieties, etc. Advocates are willing to put themselves “in the line of fire” (possible triggers), because we know it is for a greater purpose. It isn’t easy, we face people who would belittle us or want to tell us how it should be, and even some who insist to hold onto tragic beliefs about our lives. Other times we continue to put the information our there knowing it might reach no one, but hopefully at least one. This is certainly a human rights movement, and I greatly admire my fellow advocates for everything they do.

What I see every day as I immerse myself in our autistic community are people who are willing to face these challenges anyway, given appropriate down time of course, but these are also people getting in touch with what they need to take care of their well-being and for the most part we just empathise and understand each others limitations. I see self advocates who have turned their obsessions to dedicated time to help make the world a better place for each other and ourselves. I see people who fight for a noble cause and aren’t willing to back down to anymore oppression. I also see a community of so many heroes for each other. We might be friends or strangers, but we are there for each other. We have such a big connected community of people reaching out to each other, giving

kindness, compassion, and support. I honestly believe that we all save lives by being here for each other. Not only that but we build each other up in ways we might never had before. Someday I hope to meet some in person, but just even having a world of strangers to turn to online when we might not have any other friends to talk to is amazing. I am so grateful to have finally found my tribe, and be among my heroes!

Will Trusewich — Autistic Adult

Everything is inherited either by nature or nurture. But it ain’t what you got, it’s what you do with it. I’m proud of my mixed Sicilian (for its passion, cooking and Soprano ‘don’t mess with me’ mystique), Polish (musical joy, cooking, and deep thinking). and Hungarian (mystical gypsy experienes, cooking and warmly social nature) anscestry. Yes, how we enjoy and balance food is one of my joys. Nationalistically, I’m a Yank who loves personal freedoms and direct to-your-face communication and Kiwi who loves natural beauty and the remote outsiderness from living on one edge of the planet and Tongan for its humour and collective care. I’m bloody proud of being an aspie for the brain I’ve landed with, a brain which always sees myriad possibility where many see only how they are told to see, which can sense the beauty of pattern in everything from the social to the natural to the mechanical and to be able to employ art in everything I do or create. I’m proud to have suffered exclusion over and over again only to come out each time stronger and more at peace with myself. To know oneself is the gift we have been given. The sleeper never awakens without feeling pain. To end that suffering is all of our live’s goal, whatever neurotype we are. I’m proud to have listened, felt, learned and flown. Not many realise that we are each the Universe perceiving itself. I have no end or beginning. What more can you ask for?

Pamela Margaret Murphy-Mason — Adult Autistic

Pride is the opposite of shame. As autistics, diagnosed or not, we are made to feel ashamed of ourselves. Pride is about refusing to live under the cloud of other people’s bigotry. Pride is about being bravely, blatantly who you are. That’s something non-autistics get to do anyway — all that eye contact and small-talk which they do as if everyone ought to accept them as they are. When you are pushed down by others, you need pride to lift yourself up again. That’s why we have pride. That’s why you have LGBT Pride. When the world is an equal place, when no one tries to bully, shame, hurt anyone else, then we will have achieved what Pride sets out to do.

Katherine Anneal Autistic Adult and Advocate

I am proud of being Autistic but that pride doesn’t extend to the idea that I am better than allistic (non Autistic/Neurotypical) people or that my neurology is somehow superior. I am also proud to be gay and participate in gay pride but similarly gay is not better than straight. Pride in what makes us who we are is important for self concept, resilience and self esteem. That is why Autistic Pride is part of the ND movement — if we can stand up and be proud and counted then young people have something to look forward to and get the message that there is no shame in being Autistic. Pride is an antidote for shame.

Frank Ludwig — Autistic Adult

While I promote autism appreciation myself, I have problems using the term ‘autistic pride’ because pride is something I somehow associate with achievement. I am proud of being an extraordinary childcare worker and poet, both of which are a result of being autistic, but I wouldn’t say I’m proud of the condition itself — just like I wouldn’t say I’m proud of my nationality, race, gender or hair colour all of which I was born with without any input from myself.

Olivia Hatch — Autistic Adult

It’s no surprise that people with disabilities are looked down upon, I’m sure every one in this group has heard a backhanded comment, an unintentional ableist statement, or something just plain rude and ignorant. Autistic people are no exception. This is why autistic pride is important to me, and to many other people on the spectrum. So many people, including those who are very close to me, have said or done things that say “you are less”. Whether it is disclosing personal info to others without consent, lying, straight up denying your neurotype, speaking negatively about accommodations and those who use/need them, and refusing to learn about your disability, these things have a great impact and speaks vastly on how neuotypicals see you. Autistic Pride, to me, is trying to overcome the image others have made of you, and accepting and loving yourself even when it’s the norm for you to hate yourself and everything you are and it’s the norm for everyone else to hate you. It is so common to see parents, teachers, students, children, etc to say how much they all hate autism, that there is a war on autism. But that just means there’s a war on autistic people. People want to change us, they want us to fit in and, more specifically, not be autistic. That is why Autistic Pride matters to me. It screams, “I’m here and I love myself despite what I’m told”. It’s not always that easy for me though, but finding the autistic community really started a new journey of self love and self acceptance, and it has made a huge difference in my life.

Satire Henry — Autistic Adult

Welp for starters I love that my ASD has made me a weird and whacky person and my social retardness comes in handy. Haha. Safe to say I like to embrace what I have and well be me instead of being in my bubble. I love having ASD and the awesome thing about it is that it makes me smarter then most people. As for talent side of the fence well my dads side is full of talent and they are all “normal” soo hey. There’s a lot more but I’m too lazy to say what else. Haha.

Rebeca Duffy — Parent of Autistic Son

My 8 year old son would say he’s good at telling the truth! An awesome attribute to have

Nikki Yeoman — Parent of Autistic Son

My 11 year said if i take his Autism away then he’s no longer him. He is very proud to be autistic. He’s been told he’s only clever because he’s autistic but he’ll reply, if my Autism makes me clever then I’m ok with that”

Sue Abramowski — Adult Autistic

IF I wasn’t autistic I wouldn’t be me.

I think Sue’s poignant words are the fitting end point for this post.

Why say no to the puzzle piece…

It’s ubiquitous. Just about everywhere you look in the autism world you see representations of it. Whether it’s a Facebook page a support group, a peak body so many of them like to use it in some form or another to represent themselves. The Puzzle piece. It’s everywhere. Personally I don’t like it. There are a number of reasons I don’t like it but mostly I think it sees me as passive not active. The puzzle piece

has negative connotations that I don’t like, that don’t see me as an equal and that consider me a problem to be solved.

This puzzle piece has been with us for quite a long time. It was devised by a parent in the United Kingdom, a member of what was then a small group of parents grouping together to seek support for their autistic children. This group was to become The National Autistic Society, believed to be the oldest autism group to exist. At the time these parents felt it was representing of autism as a puzzling condition. Not only was it a puzzle piece though it also included a weeping child in the image to symbolise that the autistic children struggled with their handicap. This was quite some time ago, 1962. Fifty odd years later perhaps it is time for a rethink. For more information on the beginnings see this post by autisticook.

There are so many versions of the puzzle piece. Plain one, colourful one, artistic ones, multiple puzzles set into an awareness ribbon ones. So many different renditions. The most prominent rendition seen now is the blue puzzle piece of Autism Speaks. And it is this rendition which makes it irredeemable for me.

If it wasn’t for Autism Speaks use of the puzzle piece perhaps I could come to terms with it, but with the association that the puzzle piece has with Autism Speaks due to their saturation of the public channels, in my view the puzzle piece must be rejected. Even without the Autism Speaks connection the puzzle piece has problems.

The puzzle piece does not adequately make distinction between autism and autistic. The result of this is that it is used to represent not just Autism the thing but autistics the people. This is not a good thing. An autistic is not a puzzle to be solved, a puzzle piece to be fitted into normality. The autistic does not have a missing piece and there is no puzzle to be solved to understand them. Whilst this has clearly not been the intention of the puzzle piece historically thanks to its use by Autism Speaks and the way they present autism to the world it has become the case that autism and autistics are seen to be a problem.

It is yet another part of the negative narrative we see from so many of the media outlets and peak autism bodies. The use of it along with phrases like lost, locked away along with catastrophe and epidemic adds to the connection of autistics as puzzles. Again, autistics are not puzzles.

An example of how this relates and contributes to the terrible negative narrative is seen in the awful advertising video published by autism speaks:

The alternative that is used by many autistics is the infinity symbol. This is a positive symbol. It fits well with the idea of a spectrum of infinite possibility. It is in line with the idea of the cliché line “if you’ve met an autistic person then you’ve met one autistic person” Personally I like the idea of a gold infinity symbol. Infinite possibilities of personality, function, traits, challenges, skills and potential. And

Gold as the first too letters of Autism and Autistic are Âû the chemical notation for Gold.

Perhaps we autistics are the gold of humanity. Perhaps that’s a little arrogant, but as an autistic it’s a nice thought.

If the puzzle piece is something you connect with, then obviously that is your personal prerogative to do so, I would encourage you to think about its connection with the negative narrative within the autism communities that encourage cure at any cost, that do not stand against harmful and abusive treatments and give a more prevalent voice to the families and allies of autistics rather than autistics themselves.

I wonder what your thoughts are on this.

Like words on a screen

There is often discussion in forums, support groups, social media groups, blogs and any other media you can think of about verbal and non-verbal autistics. The unhelpful functioning label “Low Functioning” is often interchangeable with “Non Verbal”. I don’t agree with functioning labels, and mention them here only in reference to how they are used.

It is as though whether or not a person can speak with their mouth parts is the defining characteristic of the worth of the person. This is absolutely ludicrous. If we were to follow that logic the amazing woman Helen Keller would be considered unable to contribute to society.

There are many autistics who do not speak with their mouth parts who have a very lot to say. They say it with eloquence. They say it with clarity and they say it with their own unique voice. It is important that we listen

to them.

There is much discussion and consideration about the spoken words of non-verbal autistics, which is important. What I don’t see a lot of discussion about however is the challenge of the spoken-word to many other autistics. This is an issue for me at certain times.

Before going any further I want to make it clear that not for a moment do I consider alternative communication methods to be inferior to spoken words from the mouth parts. Whatever communication method is most suitable for any individual should be made available and not withheld from them.

Often I have been told I am eloquent, able to string sentences together well and get a message across well. This may be the case but it certainly does not come to me in a natural way. My spoken words come at some effort. For me talking is like reading words out loud off an internal screen that sits behind my eyes or in my mind somewhere.

It is not the easiest concept to explain. It might seem a bit strange, or odd. It is what it is though.

In a discussion I will be simultaneously listening and allowing my response to form on my internal screen ready to be read back. This is a contributor to why it my take longer for me to respond that it does for others at times. This is heightened when it is a situation of stress, nervousness, or indeed, where I am being spoken at with aggression or assertiveness.

I’ve had many situations in my life where I have been unable to respond. The words simply have not been there on the screen for me to read out. This is infuriating to others speaking to me at times.

Another issue I find myself having is when I am having a lively and stimulating discussion in a group setting. I have my words formulated and ready to go on my screen and the subject changes. This is most frustrating as my words are sitting there needing to be spoken, I often wonder if this is why I find myself in social settings seemingly randomly returning the conversation back to a previous topic.

Another thing I find that occurs for me is when I start to talk and I hear myself speaking but I am not sure they are the words that I had formulated on my screen, I seem to then keep talking, at times, probably raving on, as if the sheer volume of verbosity will get me back on track and to the point of what I was saying. I am never sure if what I am saying in those situations has any relevance to the topic at hand. It is a most disconcerting situation.

If I do not run off at the mouth like that I have discovered that I pause, long enough pauses for people to think I have stopped, but, they seem microscopic in length to me. These pauses are kind of like moments to allow the internal screen to refresh and refill with the new chunk of words to read out.

On thing I have discovered that is very important for me, and I suspect many other autistics, is, that it really needs to be a question and then answer pattern. Any deviance from this pattern and it all goes wrong. It becomes stressful, confusing and agitating and can often result in outbursts of anger and frustration at not being able to communicate.

It’s really important to allow time for the question to be responded to, not to rush, or to move on thinking that it has been ignored. Likely it has not been ignored but it is being processed.

So please ask the question and wait for the answer, if the pause is longer than you would expect, then try to be patient and keep waiting. Once you lose the pattern and have multiple questions or comments awaiting a response it is likely to be extremely difficult for many autistics to answer. It’s as though we are unable to ascertain what it is we are meant to be responding to. Is it the first the second or the last question. Which do I answer first. And so on and so on.

When the stress and frustration become too much it can result in losing words temporarily. I know for me at times like this it is very easy to mistake it for me refusing to speak, when in reality it is me not being able

to speak. The words are there, but they can’t be got out. Sometimes the screen is readable but the words get lost on the way to the mouth. Sometimes it is as though the screen is jumbled up and unreadable.

Regardless of the reason it is a very real phenomenon and is not an act. It is a thing that needs patience and understanding. Acceptance that this is something in an autistics life that needs some accommodation. It’s not personal or vindictive or anything like that it just is.

My personal experience in this is that it is incredibly unpleasant and extremely frustrating. It is not a situation I like being in, it is one that I loathe and would much prefer did not happen.

Wait time is a really important thing. Wait for the response. Wait as long as you need to. The preparedness to do this may just result in fewer occasions of the autistics in your life losing their words and going non-verbal for a time.

And of course remember that the spoken word from the mouth parts is by no means the only valid, or the most valued form of communication and interaction.