This is Autism

The flashblog theme for November 18th is This is Autism.  Part of a number of rebuttals to the vision of autism that the group I call Voldemort Speaks holds. They produced a fairly horrific video on the topic that most people will have seen as there would be no way I would direct people’s attention to it in any case.

 

The problem with the video isn’t even that challenges like those portrayed don’t occur with autism. They absolutely do. The problem is the unrelenting series of images that focus solely on the negative. When a person finished viewing the video they may feel like they are in shock which isn’t really what a group should be going for if they know that many of the parent’s of the newly diagnosed will have heard of them.

 

I can’t tell you what autism is. I know what my version of it is. I’ve met over a hundred people of all ages and across the so called functioning divide. Far more if you open that up to the internet and back when I thought studying the brain would help me work out the condition most people view as normal I did do a lot of courses that equip me to understand autism in the academic sense. Having worked out the academic sense is seldom useful when it comes to normal I would be a hypocrite if I listed those things as what autism is.

 

Autism is lots of things. I don’t have a financial stake in selling anyone on my particular viewpoints about autism.  One hopes that people would question any depiction of any group that was so universally negative as being contradictory to everything people should have picked up about what it means to live.

 

For my own autism I know that the bulk of the behaviours seen in that video do occur. I’m 45 years old and it’s not like the frustration and lack of power, or issues with having access to words when I most need them have faded enough in this particular version of autism for me not to recognize the behaviours.

That’s hardly the sum total of autism though. No life is lived at the extremes seen there. I have struggled with what to write for this flash blog because my own life has had a lot of grim moments in the past 22 months. It has had a lot inf the 43 years that came before those months too. To dwell entirely on those would be to rob me of my own forward momentum on this planet though.

 

My own autism includes both beating myself black and blue with my fists out of utter frustration and strolling across a stage to get my university degree.

 

Speech and all that goes with it is oddly a thing I have mastered far more than most people and which I will never view as a reliable skill set. I can read more languages than I have bothered to count and am reasonably good at 5 languages 7 if you give me the bonus points that go with one of those languages being very similar to two others. Lest someone say well that’s just a language obsession and nothing useful given I fail to speak when I need to often enough that 4 times so far this year people have wondered aloud no less, about my intelligence. Who knows how many people only thought the kind of horrible things they say if they think you are so far from present they don’t need to factor you in at all.

 

This confusion of the ability to speak and the one to think is one which I have devoted enough words to I think.  I don’t really fully understand why people hold that position as it is not an issue I was confused about at any point. Because I wasn’t confused more than a few of the variety of humans that get written off by everyone around them have done and even said remarkable things when I am around.

 

It’s a point of much frustration for me on more than one level because even if everything they say about me in those awkward moments when they make a leap they will soon wish they hadn’t were true it still wouldn’t be okay to treat me or anyone like that. Ever. 

 

So yeah I will concede that being autistic is frustrating but as that frustration is  a product of what autism is and the environment a lot of what is most frustrating about it would go away if the vast resources of time, money and information were devoted to that instead of making more money to further dehumanize autistics.

 

There are only a few things I know for sure about everyone’s autism and those things are part of the very definition of it so why some confusion exists about them I don’t really understand.

 

Autism is pervasive and neurological. There is no separating out autism from an autistic person because not only were they born that way but it impacts the brain. Every experience they have will go running through a brain that is not typical. These not typical experiences run through a not typical brain will shape the person just like experience helps shape experience. 

 

It’s honestly hard to know what impact having to defend my very right to exist more often than any human should have to while do to the person I am becoming. That’s an autistic reality that should make everyone indignant but oddly enough it doesn’t. I am not willing to chalk up my deviation from what appears to be the majority view in North America to some deficit on my part because I have seen other countries take refreshingly different approaches to how they depict autism. Ones a lot closer to my autistic reality on the whole.

 

I don’t fully subscribe to social models of disability as they have some holes you can drive a truck through but that society can make being any type of human harder is pretty obvious. We live in an age where sign language counts as a language credit in university but also an age where people routinely rob autistic people of other output methods as a matter of course. Sometimes they don’t think the person is capable of using them, sometimes they think well they have some speech or even all speech why do they need them? To that I say why not. For me some built in redundancy is good now since typing will always be easier than speaking. Speech is not the holy grail. Providing other methods of communication seems like people should view it as an of course not one to debate the merits of.

 

Autism technically consists of specific differences in key areas. Since no version of the DSM has managed to cough up a definition that didn’t at some point veer out into total pulling it out of their posteriors. A deficit model of a disability is almost as bad as a catastrophe model. So seeing a few things repeatedly referred to as deficit as well as the conflation of play and imagination again I give up for a version of the DSM that is barely 6 months old.

 

That’s autism. I exist in a state of often being quite annoyed by what countless experts laboured for years to hammer out as far as autism goes. But the DSM is a manual that doesn’t enjoy much use outside of North America so it’s not surprising given the grim narrative about autism groups like Voldemort speaks sing that no one gave much thought to wording issues, or the incredibly bad science behind linking atypical play behaviour with a limited imagination.

 

That one bugs me so much I thought of doing my dissertation on it years ago. The reality is it would be a hard sell. I had those stereotypical of autism type play “deficits”. For me my toys were props so I would think at them. They did not need to move for me to be entertained for those hours I spent not playing with them. To me that seems like a surplus of imagination for my development age. I loved to stack and to “ritualistically” move things around. So what?

 

I’ve discussed the imagination issue with my only friend equipped to be sufficiently informed about matters psychological and we do agree that there is an issue with imagination. Neither of us are illogical enough link play and imagination though. I don’t know if the scientists who do went to really bad schools but to do so does take quite a leap.

 

I suppose Voldemort Speaks might take some cheer that they are not the only ones getting autistic people irate or making huge leaps. The truth is even for those of us with autism saying what it is can be a too daunting task. Knowing the harm that a huge generalization in any direction or the other can do I wouldn’t actually want anyone to form their opinion of autism based on me or what I have to say.

 

Ideally an approach to the question could work from the extremes. Somewhere between the horrible, negative only scenario used by Voldemort Speaks and the glowing and all positive version there exists the bulk of autism.

 

Anyone who knows me knows I am not a person who believes thinking positive is always the best way to go.  I see enough comments on blogs, and lists that suggest a lot of the parent population lives in fear of false hope. For some reason false doom and gloom is okay but I do actually understand that mindset. Beyond my autism my health just plain sucks. I totally get how it can be helpful to be mentally prepared for the worst case scenario from the medical bits of my life. That being said you can’t live your life from that position.

 

The whole point of getting a definition of what it is something is and how it is likely to impact you would be to inform action. To enable you to live with those things. You don’t live hunkered down in a statistical minefield of the worst moments of being autistic lived large, anymore than you live with a arthritis that seems determined to steal your mobility. There I personified one of my other a disorders. Being an over-achiever in the field of acquiring disorders I have 5 that start with a currently and 4 pretty well permanently.

 

I know that there is a time for some disorders that are less fundamental to who I am, to view it as a destructive force. At the same time even for arthritis it has it’s benefits. Right now the only ones I can think of is that being obviously physically disabled helps a lot with getting a seat on the bus and that my old age should be awesome as it will be the one time in my life where people won’t think I am grumpy. I figure that being well used to canes and walkers and wheelchairs and various other things that are not so fun in your 20s or 40s I will be the calmest person in the old folks home. 

 

Of course probably I won’t. Old-people’s homes seem much better at catering to the “ravages of time” than autism. Pretty well any institution environment is not likely to leave me calm so it’s a pity I didn’t manage to have kids. On the other hand I have more practice resisting getting shipped off than most so maybe it will not come to that.

 

I don’t do short. I can’t even do witty when it comes to saying what autism is because I do know that is something everyone has to decide themselves While the things that make doctors go aha aha and afix the label to a person mainly mean there is a lot of overlap in those pesky symptoms of autism but each autistic person has their own life and story.

 

Life is not a straight forward or easy journey for anyone I don’t think. Our hope in even trying to participate in a This is Autism is mainly to counter things that make that journey harder. However effective a catastrophe narrative of disability might seem for find-raising, it is no way to live a life. Or view a life.

 

This very moment in my autistic life is mainly occupied with trying to type while my dog tries to lick my ear to a scary depth. You won’t see that in a This is Autism video by Voldemort speaks. We all get one life. When that life has a label, even when that label forms fundamentals about you it still can’t be reduced to the label let alone redacted to just the negatives. The same brain that creates some of the variations of havoc in the catastrophe narrative also creates much more.

 

I am by disposition a realist. People sometimes tell me I am thinking negatively but I seldom am. I also pretty well cannot say something unless I know it on some pretty deep level to be as true as possible which creates issues with a group template like this but which means if I did not think Voldemort Speaks was horrifically wrong about autism I would have to say as much. I have conceded where they are right. I know there is little point in my hoping they will do the same for the autistic community and say they are sorry. Sorry for defining the message when they didn’t have a clue and sorry for the great harm that has come from that. If they were capable of learning from me (which since I have been bugging them since they were founded I think I know they are not) they would stop trying to define autism by their own weirdly warped view. They would take a deep breath and even in the worst moments of life think about the things that are good. They would cease this perverse need to monopolize the view of what autism is and relax and celebrate the things that are good in their life. When that intersects with an autistic individual maybe they will find having put down their special glasses of doom and gloom they can see a person and not an epidemic to stop or a crisis. If they could stop for long enough to view that autistic person that caused them to start caring so passionately they might recognize the intersection of their organizational traits with those of autism. They’ve manged to have a communication disorder so severe they drown out all other narratives and a compulsion to carry on doing so despite the obvious lack of social skills.. In the field of black and white thinking they could use that video as an example. I could go on and on but since they sicken me on a real physiological level I won’t. I don’t want their to be such nice overlap nor do I want to seem flip about some of the real challenges that go with autism. To carry on risks losing the contents of my stomach and offending some people neither of which were my goal.

 

So Voldemort Speaks stop talking. You are talking your way straight into reduced profits by the looks of the people who up until this very week supported you. (Not me of course. I have had a healthy loathing for you all along)  Autism is a lot of things including the things from your video but that’s hardly all it is is it? I’ve always given the humans who founded it enough moral credit to think they must suspect they’ve goofed in their view point but think that deviation from the message would be harmful to the “good” they can do so to the much maligned Ms. Wright, I would say if that’s the view that keeps you preaching harmful and toxic points you can stop. Spend more time with that grandson posed awkwardly in some promotional shots. I believe on some level you meant well but that level has been eclipsed. Stop and learn and if you never utter another word we won’t question your intelligence or seek to rid the world of your human self.  We know what’s that like and although some experts say as a population we are devoid of empathy if often feels like the opposite is true. I can have empathy, actual empathy to the point my physiology recognizes it and doesn’t like it much, when I think what it must be like to be you. I know you have not given much thought to what it is like to be me but you have only captured a tiny subsection of all of that.

 

I don’t like attacking anything even though posts that do get more hits. I really don’t like attacking people or pretending I have a clue what life might be like for them. So since I never have attacked your personhood and admit the above is the product entirely of my mind could you not do so for autism?  I am getting kind of tired of a large fraction of what autism is being typing this kind of post. I would rather go back to other pursuits even if it meant no one ever came here again.

 

This is my autism.

 

 

 

 

 

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Warning April is coming!

It’s that time of year again. April fast approaches and with it the scramble to not so much become aware of autism but to be seen to be aware. Like any condition where being aware of it is “cool” there will be the usual Facebook things. For autism for whatever reason the colour of choice is blue. Like cancer awareness, autism awareness is an industry in and of itself.

You can buy blue accessories to show the world how aware you are. Along with any other number of things that really don’t do much for actual autistics at all. The foundation that shall not be named (I have chosen to treat this especially noxious group much like Voldemort is in the Harry Potter universe) will make a very hefty sum of money in April as will many other groups.  The raise money for autism trend is spreading so you can buy all sorts of things where a portion of the profits go towards something autism related. The rest of the profits of course are exactly that.

Perhaps the most controversial awareness thing right now though was a push to get people to spend two hours being silent with the premise that would give them an idea of what it is to be a non-verbal autistic. It was called The Six Degree Project https://www.facebook.com/TheSixDegreeProject . Proceeds from some dashing scarves – since you can’t have awareness without accessories these days go to the Canadian version of the foundation that shall not be named. While slightly less noxious than the original version that’s the easy thing to object to so let’s get that out of the way and tackle head on why this does nothing for autism awareness.

The ability to speak is only a tiny fraction of communication. It’s communication that is impaired in autism. Over-valuing speech as a component of communication or of autism for that matter is both bad science and a huge step backwards. The ability to produce speech is one of the more straightforward bits of communication. Some do, some don’t and some fall somewhere in between.  Autistics experience communication issues of a wide variety far beyond their capacity to produce speech.

Let’s look though at speech. There is a tendency to view those who are non-speaking as more autistic somehow or more severe. It’s a tendency not a fact. A tendency that some non-speaking people have challenged quite feriously.

This campaign is seen as very legitimate and heart warming because it is proposed on the Facebook page of someone who is not speaking. This alone is enough for people to label her severe. In the NT universe not speaking somehow grants additional autism credibilty whereas in autistic culture it is the quality of your ideas and how you express them that grants it. I once watched a documentary about someone I had known on a list serve for years and I had never actually known they didn’t speak. They were not viewed as less capable or more severe than any one else within our group. In fact they were one of the obvious leaders in the group that someone might pick out from the outside as being a leader.  It doesn’t seem to matter to the people describing this person as severe that she is able to post on Facebook or come up with these ideas. While that in itself has been debated I don’t see that as a productive path to go down. Never having heard of this person or project until two days ago I will stick to why a few hours of not speaking in no ways simulates being autistic.

My speech was delayed. A number of complicating factors make it hard to know how much of it was autism and how much was other reasons. In adulthood I consider myself unreliably verbal. That’s the strange thing about the focus on speech is whether a person is verbal or not is one of the first things that gets asked. It’s treated as if there are only two options despite the kind of issues I have not being all that rare that having obtained speech that speech might be unreliable is not discussed much. People say autistics think in black and white but so much about the condition is treated that way when we ourselves say that the reality is more complicated. I guess it’s understandable. If society puts a high premium on speech and attaches all sorts of meanings to the ability to do so that it doesn’t really have you don’t want to hear about the gray area. It’s a bit depressing isn’t it that someone could spend time in speech therapy, by middle aged and still have the ability to speak not be reliable. It’s usually there but there is that uncertainty. Uncertainty isn’t nice so who wants to hear that?

So back to the whole you can spend two hours choosing to be silent (while wearing an expensive blue scarf) and know what it is to be autistic. I have trouble understanding how it even makes sense. Clearly all you are experiencing is not talking. Not only not talking but choosing to not talk.

An actual autistic person might also be having trouble understanding what is being said around them, coping wth the speed with which things get said, if they understand the words many of the subtle things that actually make up the bulk of communication may be lost on them or require a great deal of effort to work out.

Communication is impaired for all people with autism and while progress may be made in various areas throughout a lifespan  it remains impaired to some degree by definition. For autistics communication will involve work and interpretation having to go on that the neurologically typical simply don’t experience. It’s taxing and exhausting and even if you can speak you may not be able to rely on that speech being available when you need it to be or even an option in some situations.

If you know you can’t speak and no one expects you to that’s a fair bit less stressful than unreliable speech. I remember the time before I spoke at all and the time I seldom spoke as relatively “nice” times by comparison to having to react to the sudden absence of a capacity people think I have. It usually departs in reaction to stress but the build up of stressors isn’t always clear to me so occasionally I have been completely oblivious to the fact it was about to fail me. The sudden inability to speak has risked my health at times, and having to factor in that this could happen to a careplan skews how people view me.

Still as stressful as that is that’s only one aspect of my autism. Only one aspect of anyone’s autism. So if I was purely non-speaking and you were trying to become more aware of what my life is like just opting out of talking would barely scratch the surface.

How would you simulate having to guess if people were joking or not? How would you experience the feelings of shame and stupidity that sometimes happen when you guess wrong? The inability to tell if someone is mad at you or not? If you did speak people suddenly getting mad at you because of an issue with your tone of voice? If you were trying to simulate life for the unreliably verbal how to stimulate the panic and frustration when you need those words and they are not there or the rush to wrap up a conversation when you feel the stress building and suspect you will soon be without words.

What about the lovely experience which I have described before of people making assumptions about your intelligence based on the absence of speech? If you have never heard the care of yourself compared to how a vet cares for an animal you haven’t experienced life in these shoes.

That’s just a small sampling of communication related issues since speech falls in that category but it’s such a small part of the overall picture.

How about dealing with whatever combination of communication difficulties you have while simultaneously having to deal with being unsure socially, and overwhelmed on a sensory level.

Not talking is not going to make you understand the social isolation that accompanies autism. Imagine always observing a world that appears to contain people like you but never quite being able to “crack the code”. Never really understanding those people who look like you but move smoothly in the world, knowing what to say and do. Who seem meant for the planet you live on in a way you are not. No amount of observing them will make you one of them and that’s a painful thing to live with. No hours spent in silence will give you any understanding of this.

The people who are communicating their objections most clearly and most specifically about the project are of course autistic. Of course you ask? Wait I thought there was a communication problem with autism. I thought that was your whole objection that speech is a tiny part of communication which is a tiny part of autism. Yes. Which is why those who have lived their whole life with it understood that the communication issue was on their side will communicate the clearest. We know exactly what communication mistakes get made and for the most part try not to make them. So although generalizations are being flung about it’s not by those on the spectrum. For objecting we get to be told we are vilifying a person even though people have been very clear that it is the project we object to and not the person. A distinction that isn’t always made when people speak about autistic self-advocates. Those badly behaving autistics do get villified almost daily. We get to watch the consequences to their health and wonder what kind of world do we live in when some of that money those dashing blue scarves, and puzzle ribbons and all the paraphenalia with which people have proclaimed their autism awareness goes to support attacks on adults with autism. So we are all very careful to say it’s the project not the person we are objecting to but our caution is not noted. We have failed to follow the agenda.

If you read the thread on the Facebook page you could actually get a better notion of what it is really like to be voiceless. To be voiceless is not the same as to not be able to speak because what you see on the page is a lot of politely written, careful to not insult the person, messages about why this is inadequate and what you see over and over again on the neurologically typical end is the kind of will-full fingers in the ears la-la-lala we can’t hear you,  that is the true root of our voicelessness.

Autism is in industry and nothing threatens that industry quite as much as listening to those who actually live it. Those who live it and won’t be poster people to raise money for an agenda we don’t support.  It’s not an inability to speak or even a communication issue with the autistic person that leaves us without a voice in the month supposedly about us. It’s that people only want to listen to a handful of pet autistics. Those that best fit the image that raises the money. Those autistics that people can respond to with glib enthusiasm and purchases funding research into prevention of autism. They, you see, manage to be heart-warming while our blood goes cold in the face of the enthusiastic fund-raising supporting preventing more people like us. The well behaved ones appear to be being exploited but that’s only my opinion. I can’t know one way or the other anything about such a carefully managed presentation. Within the adult autistic community the internet has given us the ability to be a community and some of us have known each other a long time while new media bring new comrades to our lives, it’s a long fight overall. A fight to have an actual voice. Not because some of us can’t speak but because too many people don’t want to hear what is being said.

We know how this will end. April will march on with an unrelenting supply of events like this. Those of us who protest will be called names, and insulted. While we may say “nothing about us without us”. and may even be able to claim some victories on that front (quickly pounced upon by the Voldemort foundation of course) what won’t happen in the month of April is that more people will be interested in an honest version of life with autism versus cute blue accessories and the appearance of being autism aware.

Every one of us not toeing the April agenda set by the Voldemort Foundation will be told several thousand times how lucky we are to be able to express ourselves. Lucky? Way to dismiss the herculean effort that had to be put into that. Lucky when no one wants to hear it anyway? Lucky when the way it is used is sometimes synonymous with not being as autistic as so and so or not really being autistic?  Our right to speak about our experience will be questioned. How legitimately autistic some are will no doubt come up. That the very reason we are objecting is precisely because some cannot object  is lost on those who feel the need to remind us of this. I was about to say you wouldn’t trivilize and monetize other conditions this way but of course it happens with alarming frequency. Still it doesn’t get to happen about autism without at least some fighting back. That the majority view of the adult community will be largely ignored isn’t news to any of us. We’ve lived through a fair few Aprils since someone saw the cash potential in autism.

April will be a nice illustration of communication disorder in action for sure but not because people are mimicking the inability to speak. It’s always a nice show of a receptive communication disorder and with more than a week of March to go this April is not disappointing that way.