Like a Merry Go Round

Going to the park as a young boy I used to love the merry-go-round ride. There were a couple of different types. There was

the one with the flat wooden floor and holding handles. There was the type that was a kind of pipe frame style that you sat on, or when brave lay on. I would spend hours on these. The slippery slides, the see saws, the swings and the sandpits just had nothing on the merry-go-round. It was just the best and most wonderful way to pass some time.

As I grew up some variants of this park equipment came into vogue, one was like a spherical shaped apparatus that you sat inside and spun turning a stationary metal circle. I remember in my early teens that some of the Mc Donald’s playgrounds even installed this fast spinning dizziness inducing park implements. They were seemingly not a success, as they didn’t last too long. I can imagine there was not too few occasions where children’s dinner or lunch ended up sprayed all over the playground.

As a teenager and a member of the local scout troop, it was always fun to arrive earlier than necessary as there was a playground at the top of the hill where the scout hall was. A few of us would arrive early and the feature of the playground was a grey metal tube style merry-go-round. A few 13–16 year old boys can get those things really spinning. I am sure it was never a long amount of time that we spent there but it was an experience that was always wonderful for me. I would position myself lying down on the outside edge. These merry-go-rounds had a double row of metal tubing forming the circle, which was conveniently wide enough to form a space to lay down on. It was exhilarating and strangely calming — for me anyway.

Our scout hall was on a fairly large suburban property, it was set a long way down the block and there was a path leading down from the road. Between the hall and the road was a flat grass oval around the size of a soccer pitch. Then some rough ground and the playground area with the merry-go-round in question. Several large gum trees grew around the playground. As one lay in down on the outer ring of the merry-go-round the light would flicker and waver as you looked up. It was an amazing experience to see this as you spun around very fast. It was quite wonderful.

Scouts was one of those things that was really difficult for me. I didn’t understand way back then, I didn’t know I was Âûtistic, I hadn’t even heard of it, it was even before Rainman. I loved the actual scouting part of it, the camping, the learning to tie knots and the earning of badges and all those kinds of things. The social interaction part was difficult, very difficult. Having to interact with forty other boys and men — and it was just boys and men back then, was really difficult. I was constantly finding myself left out, the last boy picked on a team, the recipient of pushes and shoves out of sight of the leaders and of course the constant nasty comments that were levelled were never easy to take.

But I loved it too. I loved the feeling of accomplishment of earning a badge, lashing poles together, getting fires going and cooking and fending for myself in the bush. I managed to cope with it. It was really hard work at times but I did manage to cope, and I think that grey metal merry-go-round had a dam significant part of that coping.

It’s not something I really thought about much. But one thing was for sure, my experiences on that spinning instrument were calm and enjoyable. The other boys I think tended to do it for the bravado whereas I really believe, with the benefit of

hindsight that I did it to calm. One thing I remember clearly is that other boys would stumble around and occasionally have an experience of feeling very sick and occasionally even have a vomiting experience after riding the merry-go-round. Never was that an experience for me. It was an experience of joy and wonder, eyes closed or eyes open as the world spun around.

Reflecting further I realise that I did this much more often than just before the beginning of the weekly scouts. As I reflect I realise all the different things I did that involved this spinning and dizzying aspect. Enjoying tumbling, rolling down big grass hills, getting adults to spin me in the air holding my arms. I sought these experiences out. It seems this was in fact a stimm of choice even though I didn’t know it.

It is revelatory to me to reflect and realise and come to know some of these things I did in childhood that were innately autistic traits and behaviours that were somehow not knocked out of me by the intensely dictatorial parenting I received.

So whether or not an autistic person is aware they are autistic doesn’t actually change anything. You just can’t take the autism out of the autistic. No matter the therapy, the treatment, the poison the behaviour plan the protocol, it just can’t be done.

I say we stop trying. I say we start accepting. I say we start celebrating and including Âûtistics everywhere and in everyday we possibly can.

It doesn’t have to be a fight

There’s no denying that the moment you receive an autism diagnosis is a moment of shock. No matter how proud an autistic I am I can’t deny that that is a reality. Whether it be a diagnosis for self or a diagnosis for a partner, a child, a sibling, it’s a moment that’s big. A moment that causes one to take a bloody big deep breath. To sigh, to hold that breath in a moment. To wonder. To have a moment of panic, a moment of horror.

All of those moments are to be expected and in reality they are healthy moments. They really are. The question is what happens after those moments because generally the information you walk out of that Dr’s office with is mostly not very helpful. You might walk out with the name of a few websites, perhaps a pamphlet or too but not much in the way of any real strategies or support.

If you jump online and start googling autism you will be bombarded with information. Some of it great some of it horrible. Most likely you will have to filter out the rubbish, the conspiracy theory and the downright abusive. You might find some groups on social media. Again these groups will have their fair share of mixed bags of people.

Undoubtedly you will at some point come across a phenomenon known as the “warrior mum” or mom dependent on your country. Unfortunately these moms, and there are “warrior dads” too, seem to have an attitude that autism is something to fight. Something they have to battle. There is a mix of course. Some will claim they are battling the system, some will say they are battling the autism and some will say they are battling to find their child inside. Thankfully this is not all autism moms it is not all autism dads.

Here’s a thing, when you walk out of that diagnosis appointment, you can take another tack. You can take another option. You can choose not to fight, not to fight the autism, not to fight the system, not to fight to find the child behind the autism.

You can choose something that’s all together different. It’s a process of acceptance and embracing. A process that says something along the lines of, hey, so autistic, well that’s different isn’t it. Actually, yes, that’s it, it’s different but it isn’t less.

I can imagine there will be readers saying well you don’t know what it’s like for me, it’s not so easy when you or your child, or your sibling or partner has complex needs. And that’s fair enough too. Yes I get it. I really do get it.

I have a really wonderful 21 year old Âûtistic daughter and a really wonderful 9 year old daughter. My 21 year old has complex issues. She has significant parts of her brain that didn’t develop or developed differently. She will most likely never be able to live independently. As for my nine year old, only time will tell.

Yes being an autism parent is not a walk in the park. Yes being an autistic parent isn’t a walk in the park either.

I wonder if it’s easy to make this choice not to have a war or fight for an autistic parent than a neurotypical parent of autistic kids. I don’t really know the answer, but I do wonder.

The thing is though, and this is the wonderful thing about it. It’s not about how hard it is, it’s not about how you have to deal with the child that doesn’t communicate with their mouth parts, the child that isn’t toilet trained yet, the child that stims like crazy and yells and screams in the shopping centre. No it’s not about that at all. That’s hard and I get it but it actually isn’t the point.

So what is the point?

The point is this, I believe, it’s about the mindset. It’s about the choice. It’s about saying, and really meaning it inside soul, your ground of being, that this is my child/partner/sibling/self they are autistic and that’s just the way it is, it’s just who they are, it’s what it is and I love them, I accept them and that will never change.

It’s such a novel idea in a way that it seems almost silly. I can tell you though, when I made that shift myself, for myself, everything changed. Yes everything about my self acceptance, my self-worth, my ability to actually say I am autistic and I am

ok. Yes everything changed. It really was that simple.

It doesn’t have to be a fight. It can be an embrace. Embrace your child, embrace yourself, embrace your partner, embrace your sibling. Embrace them for who they are and love them for everything they are now, and everything you will stand by their side and help them achieve.

No it doesn’t need to be a fight.

The Spectrum…

Anyone with any connection to Autism in just about anyway will have heard the words “On The Spectrum”. I have even seen

in some social media groups the acronym OTS to refer to is in short hand. But what is it and what does it really mean to when we say “On The Spectrum”. What are we implying, how are we defining, is it yet another example of applying functioning labels? It’s a kind of catch all phrase that many people use at different times, myself included, but have we thought about what we are saying I wonder?

Spectrum is a word that conjure up in our minds, well mine at least, most commonly an image of a gradient of colour progressing along in shades moving from light to dark, or dark to light. I have heard it said the full spectrum of colour, the full spectrum of sound. I have an idea of a colour spectrum being developed from the blending of the colours of a rainbow. It’s a vibrant and potent image.

You do not need to spend much time around autism and autistic groups on social media or autism peak bodies to see the spectrum represented visually in terms of colour. I’ve seen this in many iterations, from colourful puzzle pieces, colourful

ribbons, spectrums of colour grading across the banner of websites. Colourful tattoos. These can be wonderful, vibrant eye-catching and attention grabbing images, and they are wonderful.

I suspect the colour gradient idea of representing Autism is almost as ubiquitous as the puzzle piece. I’m not a fan of the puzzle piece myself. It’s a complex thing but there are a couple of reasons. Without going in to detail primarily this is due to its connection and identification with the horrendous Autism Speaks organisation. I also think it has connotations of puzzles to solve or puzzles to fit. I am not a missing piece that needs to be fitted in somewhere. It is a very recognisable symbol however it is important to note that many Autistic people have rejected its use as a valid symbol or identifier for Autistic advocacy and identification.

In some respects it is can seem to be reasonable idea to think that perhaps the use of the term “The spectrum” is preferable to unhelpful functioning labels like Hight or Low functioning. I don’t think this is the case though in fact, when I think about it, it seems to me that it is actually no better at all. The reason I think this is that our concept of spectrum is not all-encompassing enough.

Our concept of a linear kind of gradient is also, I believe, linked quite closely with the high and low functioning ideas. It is in

the minds of many I think an idea that it starts at one end of high functioning and runs a long a gradient of colour to low functioning. Almost as though at the light end is High Functioning or “Autism Lite” and at the dark end is Low Functioning and “Classic” or “Kanner’s” or “Real Autism”. Not a helpful idea at all and it does not take into account the reality of how day to day functioning is different from task to task, from day to day, from person to person and from moment to moment. It is such a changeable thing. There are things within the very same person that would be considered high functioning and things that would be considered low functioning. There are just so many possibilities that the idea of a linear or graduating spectrum is just not a helpful, or, dare I say it, accurate depiction of autism or autistic people at all, which, predefines expectations and capacities of autistic people.

The major issue in this I think is that if we place an autistic person in our minds at one end or the other we pre-define ideas about what their abilities, capacities, skills and challenges are without taking into consideration the actual person involved. At times also autistic advocates struggle to have a voice in situations where there is a judgement made that they are not able to speak for or about other autistics because they are too high functioning, they are not at the “severe” end of the spectrum

like the ones they seek to advocate for.

If this idea of spectrum is not helpful how can our understanding and image of what the spectrum adapt to be a more encompassing and more accurate idea and understanding of what the Autism spectrum is and what it means for an Autistic person to be “On The Spectrum?” Some may think the idea of spectrum could be dispensed with to deal with this issue as many advocates are trying to dispense with functioning labels. This is simply not feasible. There is far too much identification of the spectrum, the symbolism of colour to simply dispense with it, and of course it is a virtual impossibility as the very word spectrum is in the actual name of what we autistics are in fact diagnosed with in the formal sense. It is, let’s not forget, the Autistic Spectrum.

If the idea of a linear or gradation spectrum is not a reasonable idea then what is? What is both a helpful and plausible reimagining of this idea? If it isn’t a linear spectrum what kind of spectrum is it? I believe that the best image we can have to represent this idea of spectrum is an image of infinity. An infinity symbol similar to a figure eight has no beginning and end it just keeps going, the start and end point is everywhere all at once.

Think about it for a moment. The spectrum, infinite possibilities. Infinite possibilities of combinations of skills and challenges. Infinite different combinations of needs for support and capacities for greatness. It encompasses that idea that is embodied in the quotation “if you’ve met one autistic person then you’ve met one autistic person”. Just as every Allistic person is different and can’t be defined on a line of definition so is every Âûtistic person. Essentially we are all unique.

The importance of this is easily overlooked, and this idea can easily be dismissed as being pedantic. But I don’t think it should be, in order to best support autistic people we must see them as unique human beings. If we allow a kind of placing of autistic people somewhere on a linear line then it becomes that much more difficult to consider that person as a unique person. By insisting on this uniqueness we make way for them to be seen as an individual, for real enquiry in to what their needs are, what their skills and capacities are, and the development of the truly individualised development of support where it is needed. The alternative, essentially what we have now in many cases, is a grab bag of ideas to apply to that person because they are in a particular position along the imaginary graduated line of the spectrum.

Just as the three primary colours can be mixed together into essentially infinite combinations to develop infinite hues and shades so is the Autistic spectrum an infinite mix of neurological reality that results in an infinite mix of autistic people being on this planet we call earth.

A Century of posts

This post marks the 100th post on this blog. It is something of an achievement to have got to 100 posts on this project. I thank my readers for prevailing. It has certainly been a journey of discovery from when I started this blog back in 2013 before being confirmed as an Âûtistic. I am happy to have emerged from that journey of discovery as proud Autistic man.

A journey that started with a sense of fear and trepidation of what it might mean to be an Autistic person. An internal journey that asked the question of who am I, no really, who really am I? Analysing and assessing the things I did the way I thought.

The legacy of having two autistic children. It really was a moment of choice. A moment that asked of me, what have you got in you? Have you got it in you? An question that really at the very crux of it, asked, do you believe in you Richard?

At the other end of this journey I can say with confidence that the answer is yes. I believe in me. I believe that I am fine just the way I am. Yes I am different and you know what, it doesn’t matter. It wasn’t always that way so easily.

I had walked a journey, in a sense through the valley of the shadow of death as the famous Psalm 23 says. But I did fear some evil for a time. I feared much at times. There were times where taking it on internally was a feeling and a notion within that said, in an almost accusatory way look what you have done, Richard, you have brought this on your children. You have given them a life of difficulty, disability and problems. There was this scary element of taking on responsibility of what have I inflicted on my kids?

Thankfully this dark period was reasonably short lived. I do believe it was a necessary part of the journey. It really was, I don’t believe my true acceptance of my being Âûtistic would have been either possible or authentic without it. To rewind, back to the start of this blog. It started in an internal thought process that was in a sense an acknowledgement, that there was enough evidence in front of me to accept the likelihood that most likely I could say with some confidence that I was not Neurotypical, that No Way could this be true, hence the name of the blog in it’s original form on the WordPress Servers. For nostalgia here is the first post. Be kind, I have not, as I write this revisited this post. I am hopeful it is readable and intelligible

enough to comprehend.

Reflecting back I recall the overall underlying feeling within me was in fact a feeling of hopefulness. A hopefulness that I would somehow after 40 odd years of life have some kind of answer as to who I was, what made me tick, why this pervasive internal dialogue that had always made me feel different and oftentimes broken would be answered. I devoured the information I could find online. I made contact with the couple of Âûtistic adults I knew. I found online tests and completed them. I talked with my daughters therapist. I was hopeful and expectant. An answer was out there and I was going to find it.

The online tests were quite conclusive. I found the Aspie Quiz, a bunch of tests at Aspergers Tests, and the one over at the rdos.net site. All of them concluded the same thing — Likely Neurodiverse. I had some inkling of the concept of self-diagnosis but I had not really got much info in that regard. I was looking for confirmation. Within myself there was certainly a narrative that went something like — you need that professional to tell you, to confirm it.

After some missteps I found someone who was able to see me not too far into the distant future and had some expertise in diagnosing adults as well as children. I got my appointment and got myself prepared. I was ready for this.

Well so I thought!

The appointment happened, and then disaster. Employment meltdown. No Job. No funds. No report with no funds.

An interlude of about 18 months before a gift of funds to pay for the assessment came in. Another visit to the professional and a confirmation.

A surprising shock. That was unexpected. It really was, I recall sitting there thinking to myself as the professionals words washed over me thinking why am I shocked? You already knew this. You shouldn’t be surprised.

A few months of thinking not great thoughts about it all. A few months that were punctuated with a sense of brokenness, a sense I was less, or wrong and incomplete. Amidst this time was a frenetic family life with an extra teenager in the house for a few months, a daughter completing high school and an unplanned house move.

Then came April this year. World Autism Awareness Acceptance Month. The discovery of Amythest Schaber’s Ask an Autistic Series. I discovered some others too, some wonderful Autistic Advocates, that changed the narrative in my head back from less to different. It was a wonderful transition back. It is interesting to me that before I was diagnosed formally I had maintained a difference not less idea, yet fell into a less idea in the immediate aftermath of diagnosis.

I am so happy to have met, whether in person or online so many wonderful Autistic advocates, I mention a few here in no particular order of preference or importance. And apologies to any I have missed there is no intention to do so, this is a bunch of names that are in my head in this moment in time: Emma Dalmayne, Fiona O’Leary, John Greally, Tina Richardson, Joanne Dacombe, Jeanette Purkis, Bryan Chandler, Sarah Widdup, Tori Haar, Sarah Hansford, Penny Robinson, Penë Rice, Tony Langdon, Beck Kelly…

There are so many this is just a sprinkling. I am so happy to have met and connected to so many wonderful Âûtistic people and to join the wonderful Âûtistic community. It is a privilege and an honour to be a part of it. Thank you for including me. I look forward to a lifelong connection in this wonderful and awesome community, and I look forward to continued connection and involvement with the parents of Autistic children and having a positive impact on their lives and hope to show them that this Autism thing is not a death sentence, not a losing of anything but the gaining of a wonderful neurodiverse experience of life.

Thank you for hanging in there for these 100 posts. I look forward to journeying with you over the next century of posts.

A Day of two tales

This day has presented to me two virtually diametrically opposed narratives. On one hand was the really pleasurable experience of reading Karla McLaren’s wonderful article Focusing on autism-positive approaches (to stave off despair) A really great article I highly recommend you give it a read. On the other hand was the less then positive experience of watching the story on todays edition of A Current Affair, a tabloid journalism show on Australian Television’s Channel 9. You can see their Facebook page for more information about them.

On the one had was the discussion about searching for research that was not of a negative narrative, pathologised, and deficit model. A fruitless search.

On the other was a 10 minute or so story that painted in every way Autism as a problem to be solved, or endured or cured, or changed. There were a few stories of a few autistic people. The focus was on their challenges and not their skills. The focus was on the experience of their parents and siblings and not on their own experiences. This is very much a problem with the narrative that we have. A narrative that is continually presented with minimal or zero actually autistic voices. When those minimal voices are presented it is, at least from my viewing angle, is tokenistic.

It appears to be all about the stories that will bring about the most viewers. The best sensationalism it what it really seems to be about. Stories of devastation, stories that are full of difficulty, struggle and loss really fit this bill.

I would like to say here that there was effort made by the program to put a positive spin on the program. Unfortunately that spin was all about how particular therapies and interventions had brought about successful change in the autistic people involved. The idea of autistic people being accepted as they are was non-existent in the narrative or the imagery in the programs.

During the program the primary interviewee made the statement that “it’s not going to go away it’s going to get worse and worse and worse.” This is nothing but a negative portrayal. It displays a lack of acceptance of autistic people for who they are.

The implication was that this can be changed by intervention, by intervention the “autism” can be minimised. This is simply not acceptance at all it is ableist and smacks of a cure culture.

Unfortunately this is not surprising as the stories we see about autism and autistic people across the media are generally of this kind. Generally they are very much about the experiences of the people surrounded by the autistic person rather than about the actually autistic person themselves. Whether it be the print media, the screen media, or indeed the social media streams. The stories that we see mostly are stories of struggling against autism, surviving autism, grieving for the lost child, and sickeningly triumphing over autism.

It’s time to change the narrative. For my part I have attempted to make contact with the program and asked the question of they would be interested or willing to hear some autistic voices. I hope they make contact, as I do believe they want the best, I do believe they are just caught up in the machine that is the Autism Industry which thrives on the negative narrative. The only way to change it is to keep speaking out with actually autistic voices.

Awaiting with trepidation

I have just received a tweet from a fellow autistic. Tonight in Australia in primetime we are having our tabloid current affairs show presenting a story of a media personality and his families “struggle with Autism”

I respect this man, however I am fearing yet another negative portrayal of Autism and Autistic people as locked away, unable to function etc.

I found this promo for the show on youtube….

My fears are not allayed when seeing on their website a poll asking if any in your family “suffers with autism”

It’s so disheartening as to always be portrayed as suffering and hopeless.

I do hope my fears are misplaced.

Advocacy blocking by keyboard warrior

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The above gallery highlights the only acceptable way for posts to be displayed in the BANCDMMS Facebook group. It is a group that is meant to be a public group to raise awareness of the terrible treatments of those against abusive treatments of Autistic people. I say the only acceptable way of posting as any other form is deleted or changed by the sole admin of the group. This sole admin actively removes and blocks members who dare to question this.

I am one of those members. Another is Fiona O’Leary and another is Emma Dalmayne. I am a little more like a keyboard warrior than these other two fine advocates, who are putting their selves on the line every day for the protection of autistic people.

As you page through the images in the gallery one thing you will notice is the prevalence of the content is authored by Fiona, Emma and myself, not exclusively, but predominantly.

Essentially we, and we are not the only ones, are blocked from participating in this group, but the content of the group is predominantly made up of our broader contributions to advocacy against abusers of autistics.

So it could seem I have an axe to grind here, and maybe I do, but that’s not really the point. The point is that this so-called community group is ruled with an iron fist by a single demi-god like admin. He is a known member of the infamous. Over the last couple of days I have attempted to make contact with the admin to request an explanation for why he refuses to properly acknowledge and link the source of content.

The method of doing so was to use a back up Facebook account. This was an account I created when my primary account was reported for a fake name due to the Âû at the end of my name. I noticed that this account was still a member of the group as it has been a dormant account for some time. I entered the group and put up a post asking about the reasons for not linking to the posts directly. I also posted links to the originating blogs of a few of the posts in question.

As can be seen the comment is simply a link to the original post nothing more, nothing sinister or critical.

On returning to the group the following day I discovered I was no longer able to post to the group. I refreshed my browser page to discover that not only had I been removed from the group but I had been blocked from even seeing the content in the group.

Surely this is not an acceptable way to deal with disagreement. Surely this is not a way to approach a so-called Open Group? A so-called community group?

I then went to the admins public profile and contacted him to ask if perhaps there was a problem with the group. Had it ceased to exist. Hoping that there would be some possibility to discuss the issue in a reasonable manner. Unfortunately that was not to be the case. I composed what I felt was a perfectly civil and polite message:

As you can see from the above image I sent a short message via the chat facility and it was seen at a time of 20:41. As can also be seen the response from Craig, was to block me personally from contacting him. This displays a pattern of behaviour. Any critique of questioning of the admin is met with blocking, no discussion, no answer, no communication to be entered into.

There is much more that could be said about the background and history of this situation, which would give some interesting gossip but would not in fact assist in the situation at all. What is clear however is that one person in this equation is actively blocking others from information whilst trying to drive traffic away from other sites to his own site. And for what I ask? The cause is the protection of Autistics. It’s not a competition, surely that is just plain ridiculous.

Whilst one person plays silly games blocking real advocates and playing demigod, the real advocates are out there putting their lives and families on the line to protect Autistic people. This is not acceptable. In the last 24–48 hours I have seen these fine advocates vilified and pilloried in public websites as paid shills and as instigating or being involved in murders of doctors. Meanwhile the so-called admin of the BANCDMMS group on Facebook simply sits behind his keyboard trawling the blogs of real advocates to build content on his group, as he has cut off from contributing almost all those that are out there writing, emailing, phone calling, doing interviews and bringing to the publics attention the abuse of autistic children and adults.

This is not acceptable. I encourage any who are a part of his group to leave it. I encourage you to find alternative advocacy groups to join, there are others available.

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Not just a quibble over language

Negotiating life as a human is complex stuff, I think it’s safe to say this is true for everyone. Human relationships are messy. They are filled with all manner of joys and sadness, wins and losses, good times and hard times. This is just the nature of it all. You can’t win them all they say. You can’t get it right all the time. A good amount of give and take is needed from all parties in a relationship to make them work.

Negotiating life as an Âûtistic has extra layers of complexity. Not necessarily more difficult but certainly some different layers. There are those familiar traits that are talked about often, the propensity to be literal, the propensity to say it as you see it, communication difficulties. All that stuff adds extra complexity for the Âûtistic to negotiate. This can be really hard stuff, and when you add in the sense of politically correct speech this can be really hard for anyone to get right in the right situations let alone an Âûtistic person that finds it challenging and difficult to read the non-verbal communication that goes on in all social exchanges.

There’s no doubt about it. It’s really bloody hard to get it right.

I get it wrong lots of times. I offend people without meaning to. I upset people when I don’t want to. I damage relationships when they shouldn’t need to be damaged.

So I want to put it out there that sometimes this political correct speech stuff needs to be, I don’t know, maybe just not taken so seriously.

There are absolutely things that should never be forgotten, and never be seen as okay. For example the use of the “R” word and the “N” word. There’s just never a time when that is a reasonable word to use to describe another human person, it’s just never right.

I found myself in a situation recently where no matter what I tried to say it was wrong. I made a comment that was rushed and not thought through, it was mistakenly taken in a way that it was not intended to be, and however I tried to rectify it was just impossible to get it right. Part of the problem for me in some respects was not actually having the right terminology to

apply that would not automatically cause offence because it was politically incorrect. It was a sad and frustrating situation. But we do need to realise that sometimes the wrong terminology does not mean that offence is intended or should be taken.

It’s a fine line and there will always be times we get it wrong. That’s life I guess. Not much we can do to change that.

I think what I am trying to get at here is there are times where quibbling over a term is important and time when it isn’t worth it. The relationship between the humans involved surely needs to be the tantamount thing, and the knowledge of the intent and the heart of the person being engaged with, when there is an ongoing relationship, should be the primary concern surely.

To turn our attention now on an issue that is important when it comes to quibbling over language, and that issue is the language of disease and disorder in regard to Âûtism. The official language is Âûtism Spectrum Disorder. This is the terminology of the DSM5, the “Bible” of psychology and psychiatry when it comes to diagnosing people. The problem with this terminology is it denotes a deficit, it denotes a sense of less than desirable, or less than “normal” whatever normal actually is anyway.

Simon Baron-Cohen has suggested that the terminology of Autism Spectrum Condition would be a preferable use of language, as it does not have the same automatic connotation of lessor that the Disorder language does. Perhaps a case in point here is that as we understand humanity more and more we do adapt our language with our adapting understanding of the human condition. For example until 1980 the DSM in it’s earlier iterations listed a disorder called Homosexuality

Disorder. Rightly we now discard as offensive and wrong the idea that homosexual people are disordered people.

So too must we reject the language of disorder when it comes to Âûtism. The vast majority of scientific and psychological thought on the issue of autism, once the conspiracy theorists and the vaccination as the cause, nincompoops are ignored, is in agreement that Âûtism is a neurological difference, not a deficit but a difference. This is a case where we aren’t talking about kindergarten political correctness, but highlighting a real point of difference.

Think for a moment about the difference between “has autism” and “Autistic” for example. If I say I have autism it automatically leads towards thinking of something one has, something that has been caught or something that can be cured. Whereas, the word Âûtistic leans more towards a state of being, an intricately intertwined and inseparable part of the person.

It has been said that we shouldn’t quibble over the language of disorder, disease or condition in regard to Âûtism. I disagree with this contention wholeheartedly. It is incredibly important. It is a point of difference that simply should not be put aside and ignored. It’s not about political correctness at all, it’s far more important than that. It is so important that the very safety of Âûtistic children is at stake.

Over the last decade in particular we have seen the language of disorder a prevalent narrative amongst the Autism peak bodies like Autism Speaks and generally in the media. It is precisely this narrative, which often includes such emotive terms as catastrophe, epidemic and even holocaust, that creates a sense in the parents of autistic children of devastation and loss.

This sense of devastation and loss is what has enabled the snake oil and poison sellers, and the unscrupulous practitioners and clinicians that prey on this devastation to sell their evil wares, and try their abusive treatments. Those Like Kerri Rivera, Amanda Mary, Jeff Bradstreet and Andrew Wakefield.

So no it’s not quibbling over language, it’s a bloody critical point of difference.

Not Invisible — You just have to look.

There is no such thing as a perfect childhood. There just isn’t. It just isn’t that way for anyone. It really isn’t. It’s easy to look in and see that a certain family looks like everything is easy, everything is perfect. Great careers for mum and dad. The kids are great at sport, popular and smart too. It all looks perfectly wonderful. But underneath the surface there is always issues. There is always something that goes down that is less than perfect for the family.

Yes Dad has a wonderful job and it pays well. The kids have all the toys and games they want. The latest iPhone, iPad and laptop is regularly provided. It all looks so easy. It all looks so perfect. No one sees the tears shed as the kids mourn the lack of time they get to spend with their parents. No one sees the pain of the Mum, as she waves goodbye to Dad as he heads of for another week long trip for meetings.

No one sees this pain.

There is no such thing as the perfect family. There is no such thing either, that the difficulties disabled children endure can be eradicated. No there really isn’t. There will always be the sideways glance at the boy in the wheelchair. There will always been the talk of the other parents who don’t want the disabled child in their child’s classroom. There will always be that teacher that doesn’t want to deal with the special needs kid in their classroom. There will always be that because we will always be part of a human race full of flawed people.

I’m a disabled person. I always have been a disabled person. I didn’t always know this because my disability is an invisible one. Well actually no, it’s not invisible. It’s wrong to say that actually. It might be a little harder to see that I am disabled than it is to see that a person in a wheelchair is for example, it might be easier of course but it sure is not impossible.

As a young boy in school I didn’t recognise it in myself. I really did not have a good time at school. Actually it was pretty much a hellish journey. I’m Âûtistic and one of the things I am really good at is remembering shit. Like phone numbers, events, useful things and really useless stuff too. For example I remember photographically events like what happened in the final over of the West Indies Versus Australia World Series Cricket match from 1985, my phone number for the home I lived in from 1979–1985 — it’s 612 9528 5340. Although of course it didn’t have a 9 in it in those days.

Because I remember these things so well, it strikes me as significant that so much of my school life was a life lived in a fog. Snatches of time are there, yet whole long timeframes are nothing but a blur. I spent my first year of school was spent in a very small school. There were only two classrooms, in one room were the Kindergarten to grade two children and in the other room were the grade three to six kids. I have virtually no memory of that year at school, except for wandering the school yard in silence on my own. Sitting on the carpet in a fog of unknowing, as the faceless teacher’s words washed over me.

Grade 2 was at another school. I remember the teacher. Mrs Burman, I remember Perkins Paste, I remember maths problems on the board. I remember being bashed up in the boys toilets. Bashed up in the four square court. I remember being teased relentlessly for making the mistake of admitting that I liked to watch the pre-schooler TV shows in the holidays. But mostly I just remember walking in a haze, wanting to have friends but never managing to make it happen. I remember spending lunchtimes and recesses living in fear of when was going to be the next time I would get kicked, punched, teased. It was not something any child should have to deal with.

I remember how in trying to join in I would try to play the same sneaky games in the classroom but always seemed to be the last one to realise the teacher was watching. And of course there I was left holding the bag as it were and the one that ended up in trouble.

Just a little microcosm of my school experience, it gives a bit of a clue to what school was like in the early years and continued to the same as school years rolled into each other. The other side of the equation was home life.

I remember very much from home life. I remember the wooden spoons broken over my arse, I remember the ridiculing by my sisters, the yelling and screaming for always doing the wrong thing. I remember always feeling how I couldn’t be understood. That somehow this was all not right. That somehow this was wrong. That somehow I could not make sense of this ever.

I didn’t recognise my disability. I knew I didn’t fit somehow, I knew I was kind of like in someway that stereotypical square peg that could not fit in the round hole. My family clearly didn’t recognise my disability either, they didn’t see me as someone who didn’t fit in but as a naughty, difficult, stupid child. Often I was told I was dumb. Often I was the scape goat when something was amiss in the family. Always wrong, always the black sheep.

What the point of this spewing of self-pity you may ask?

Just one thing really. That many of us Âûtistic people have been through some similar experiences. Many of us have not learned of our disability until it was too late to avoid what has been endured in our lives. Many of us were bullied relentlessly. Many of us tried so hard to fit in but failed abysmally.

The disability we have is not an ailment, it’s not an impairment. It’s a social disability. It’s a disability imposed upon us. It is imposed upon us for no other reason than we are different. We are faced with a life of being told you must fit in you must conform and you must do everything you can to not draw attention to your differences.

You may think that this is a throwback to the dark old days when we didn’t know much about Autism. But unfortunately you would be wrong in that thought.

Âûtistic children are faced with the same dilemma today. They are faced with walking through life with similar issues. And this is predominantly because of difference being seen as wrong and less.

There are times where I just want to throw my hans up and say it is just all too hard. But I remind myself that this is not the okay. I can’t knowingly do nothing to stop these kinds of experiences happening all over again to a new generation of Âûtistic children.

What can be done?

Quite a lot!

Tell your positive stories about Âûtistic people
Tell the media that we are different not less
Speak out about the narrative of deficit and disease promoted by Autism Speaks and the organisations like it.
Write to the newspapers and inform them of the abuse that occurs with horrible treatments

Just a few ideas that spring to mind.

I long for a world where Âûtistics are accepted. I long for a world where announcing that you are Âûtistic is not an opening for you to be dismissed and discriminated against.

I appeal to everyone to help Âûtistic advocates to change the narrative of disease to difference, from less to equal.

Please don’t grieve for us.

Young Jeremy is a wonderful young man, he loves to play in the park, to experience the input of the world around him, the sights and sounds, the feeling of air on his skin, the breeze as it rushes past his ears. The textures of the trampoline mat against his skin. The sand of the sandpit as it flows through his fingers. Jeremy has an incredible rich experience of his world, and its relation to his sensory world. Jeremy effortlessly categorises the world around him, the leaves of the trees, the tiles on the walls, the pebbles in the garden, the caterpillars and birds.

Jeremy’s ability to

make files and folders in his mind for all these categories is prodigious. He is a very capable boy in so many ways. As Jeremy walks through the world he absorbs the written words that bombard him in signs, advertisements, and the like, with such veracity his internal vocabulary is massive.

Despite this, Jeremy, is labelled in an unfair way, that assigns him one of the dreaded functioning levels, that despicable label of “Low Functioning”, all because, Jeremy is unable to speak with his mouth parts. Jeremy longs to communicate with the people around him, his mum, his dad, his sister. Unfortunately though, Jeremy’s mum and dad are 100% set on Jeremy speaking with his mouthparts. There is to be no sign language there is to be no PECS, there is to be no ACC.

While Jeremy plays happily at the park enjoying his surroundings, his mum Maria sits, thinks, watches, and cries. Maria thinks about the day she learned that Jeremy was Âûtistic. Maria cries. Maria thinks about lost dreams, maria worries about how Jeremy is different, and not typical like other kids. Maria weeps profusely and sobs out grieving ideas of the loss of a child she never had. Jeremy pauses i his play at the sound of his mothers sobs, Jeremy tries to understand why his mother is upset, Jeremy hears her talk over coffee to her friends about all the loss, Jeremy reads over Maria’s shoulder as she writes of the grief of losing the child she never had.

Jeremy wonders what it all means, how can my mum grieve the loss of me, I am here he thinks, I am not lost, or locked away I am here, I want to tell you mum of my thoughts, my feelings, my hopes and my dreams, the words are there I can see them on the surface of my mind, I just can’t get the mouth parts to obey. Please let me have something to tell you.

Please mummy, thinks Jeremy, please mummy don’t grieve for me.

*******************

What has come above is a work of fiction. Fiction can convey truth in a powerful way. What this piece of fiction intends to portray is an unfortunate effect of the negative narrative that is prevalent about Autism and Autistic children. There is so little narrative around Âûtistic adults that it is hard to make a judgement of whether that is a negative or positive narrative or a negative narrative.

I am sure I have posted this video previously but see here again an example of the extreme negative narrative that is promoted by, what is probably the largest Autism charity in the world.

Is it any wonder then that it is a difficult task for autistic advocates and autism advocates to encourage parents of autistic children to not grieve the child they believe they have lost. To not spend time sobbing and crying for something that never existed but rather to accept, include and celebrate the child they in fact have. To do all that is possible to encourage that child to be every thing they can possibly be. To find every way they can to accommodate and support their child to make their communication accessible to them and their peers.

Regular readers will know, I am a proud autistic. I advocate for acceptance, I advocate against horrible treatments. As shown particularly in my last few posts. I am a proud autistic and I am here, alive, living, not locked up, or locked away, not missing. None of those things is true of me. Nothing of those things of true of autistics.

Autistic people are human people. Autistic people have communication. Autistic people have strengths. Autistic people have weaknesses. Just like every other group of people who live on this planet, autistics have strengths, weaknesses, skills and challenges.

I appeal to mothers, fathers, brothers and sisters, uncles and aunts, neighbours of autistic people, I appeal to you, to look not for what we lack the ability to do, but look please for what we can give to you, how we can bring you joy, how we can bring you richness to your life. Please I implore you to never think about the loss of the child that never existed. Please never go down that line.

You haven’t lost something you never had, but if you allow yourself to think that way, to act that way, to talk that way, you might end up in a situation where you do in fact lose what you do in fact have!

Please don’t grieve for me! Please.