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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6 thoughts on “This is Autism

  1. Dear Gareeth, thanks again for an interesting post which at times I find a tiny bit hard to follow as I am more the Keep it Simple kind of woman (having said that, I too tend to ramble at times)… But my biggest question is what is this Voldemort Speaks? I know of course who Voldemort is – but are you referring to the community of psychologists, metaphorically? Sorry for my ignorant question, but I am curious.
    Also, I have now 2 students in my class who have told me they have some form of autism. I’m curious about that, as I was last year when I had another guy in my class who had autism, and so far all three are very high functioning, very verbal, and only from time to time could possibly be seen by me as a little different from the other students – who are each and every one a different human being in their own special shape and form.
    Still, I read through most of your post hoping to find out what would classify these students as autists and different, let’s say, from me, but I’m not sure I found it yet.
    Thanks again for opening up your world to me/us – your readers… it is greatly appreciated. A good rant can be fun, too, right?

    • Hi Audrey. It’s a bit rude of me to cut-in on what is Gareeth’s right of reply. I too work in education (part-time and in humble position) with children who are autistically characterised.
      What then characterises Gareeth’s writing/narrative for me, is the manner in which it comes from the epicentre of being-autistic, whereas my own (when compared with Gareeth’s) is authored and voiced from a standpoint outside that epicentre.
      If I might be bold, and in doing so leaving what I say at risk of ending less authentic than what Gareeth has to say, it seems to me that it is the architecture of occurring and enduring autistically, which is expressed in the warp and weave of Gareeth’s voicing.
      The trick in adding to your sense of your autistic students, across reading Gareeth’s writing, might then be to reflect on whether there is any echo in what you already sense of your students, in what Gareeth has to say in his narrative about being autistic.
      Then again, have your students had opportunity to engage with autistic adults who reflect on and speak about their occurring and life, as does Gareeth? If they had that opportunity, might that amplify something already nascent in their own sense of their own occurring and life?
      Regards the settings in which we work as educationalists, I allow Gareeth’s perspectives to represent another side to things. A side other than that populated and expressed by managers and trained professionals of all kinds. Some autistically situated children I support fight a war against the side represented by teachers and managers and other professionals, and patiently striving to draw out the implications of what Gareeth reports, helps me understand why and how these children fight their war, helps me consider how these children might move things for themselves off a war footing.
      Voldemort Speaks is not the community of psychologists per se. It is a pseudonym for an organisation whose view of and activity around the autistic, results in such constitutional distress for Gareeth, that for a complex of good reasons he chooses not to properly name.

      • Audrey I am sorry if I couldn’t get to the point or write in a way that made sense to you. It was a tough exercise for me. I have said how to get to who I mean when I say Voldemort Speaks. It’s the group that profits from a catastrophe narrative of autism.

        As far as failings in other groups go including those who seek to define autism but don’t give much thought to the impact of words even though that is also something they study I don’t know what to say. One cannot rail against all psychologists because there are good ones out there pursuing real science in an ethical way but those would also share my objections to huge, unsupported by any data, assumptions being made.

        I’m essentially for people questioning what people claim to now about any population. For narratives that don’t rob people of their humanity. I am in favour of balance.

        I know I have a significant disability that makes a lot of things difficult but I would prefer if added difficulty isn’t heaped in that need not be there by fighting errors in what it means to be autistic. It’s hard to truly understand the damage wrong notions can do unless you have lived that damage. Not witnessed it but lived with the pain of people thinking you can’t love, or will have a problem with empathy just because how you display those things doesn’t fit how they do.

        I hope this was easier for you to read.

        • Dear Gareeth, Thanks for taking the time to clarify things for me. I sometimes get lost in long narrative, and that is not your fault, but certainly at least in part, my own. I sometimes lose focus – that’s really my own issue. I am happy to hear the things you have said, and to understand that my basic open curiousness is going to continue to be a good direction when dealing with people in general – whatever or whoever they may be. Take care and may you enjoy better health ! I recently hurt my back (just stretched a muscle – no biggie – but felt like my whole world was taken away – so I can’t imagine how frustrating it must be to live with various physical disabilities like arthritis… AGain, take care. Be well. And keep on writing!

      • Thanks Colin, I don’t mind your cutting in as I was at a bit of a loss. I worked for 8 hours on what apparently didn’t effectively communicate anything to some people so while saying it is easier to write than speak much of the time writing can seem as futile as most engagement with humankind.

        I appreciate your having waded through enough of my writing to know what Voldemort Speaks is and to say the reasons I have for not naming them are good. If every person working in education or any person period had the ability to attend not to what is the done thing with regards their students but to question that done thing. I’ve spent time in educational situations with my clients and I know that across disability there is a tendency to completely underestimate them. The difference for autism is part of that underestimation includes outright wiping up from the planet kind of rhetoric.

        I did actually edit the thing down to a much ore readable format no less than 4 times before giving up in the face of wordpress restoring the document it’s heuristics felt was the most up to date. Then I gave up much as there are days I have to surrender as far as my limited ability to not make people think the wrong things goes.

        Sometimes my autistic peers nicely distil the point of my message and I think hmm I could have done with 2000 less words when the quote that bit. I am glad, Colin that people like you exist who do look at the autistic person in front of you and question the contrast between what you see and what is said. Keep it up.

        • A lot of people get lost in my narrative so I suspect it is at least partially my fault. Since it is a message I care about I have to keep trying when people let me which I am glad you have.

          My arthritis is degenerative so there is no better for it. I am used to it and made an unhappy peace with the likely course of it when I was still legally barely out of childhood. I had a wonderful professor who was life altering as far as setting aside my despair. He had Parkinson’s and used himself as an illustration often. I had seen it progress from the barely visible on first year to his being able to demonstrate festination (inability to stop moving once started) for us in a motivation and behaviour class. When he asked how I was one day when I came seeking a recommendation for grad school and I complained I was having trouble accepting I could never climb a glacier again he told me the day would have come when I no longer wanted that in any case. Nothing anyone ever said about it made me realize that essential truth. Perhaps only because he actually knew what it was to lose control over movement and to be an expert in the brain and live with an unruly one could he cut to the heart of how to be less unhappy with things. If a person unencumbered with disability had made the same point I would have been outraged maybe or focused on the notion I was still young and shouldn’t be setting aside such desires, but I wanted to be as great as he was and that included very much making the best of your reality not raging against what it had taken from you..

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