Scripts

I am not that self-driving in my blog. Searching for things to write about 7 months ago this was on the wish list  of a few people and I feel sure I am about to possibly miss the mark or not depending on where they are on their journey with the whole every human has different ways of operating , some of them not that functional but  the numbers advantage of what is officially seen as pathological is on the NT side.

I did  say that most of the things that get labelled all sorts of things but all of them grim labels about how autistics express themselves when it cannot be understood are in fact something one can understand for the most part.  They just don’t fit expectations.

Some are harder to work out than others but  repetition is a real skill set of the autistic. I tell my  dog the same not that funny,  not quite a joke, based on the Talmud every walk he has on  Shabbat   A strength of dogs of course is knowing this is the prelude to a walk and not being able to express that there are down right funny bits and sticking to the content from work prohibited on Shabbat (including taming a wild beast … For dogs this would be if they strain on the leash.  From the time I was 9 and the era of dogs taking me for a drag ended I have never had this issue.  My dogs would all be in the most likely to hide in my shadow hall of fame…. )

If I were say yelling that at a dog and concerned citizens came to help  well it is hard to know  if being Jewish would help much.  It might give a person an edge on knowing the phrase  and so it goes.

For the more usual kind  an autistic comes up with a way of expressing the same thing and sticks to it. It is not how neurologically typical children express it and thus it is harder to make sense of.  The desire is thankfully not missing in the people who asked me about this as one could of course just view it as content without meaning and go with the kinds of therapies that might indeed make a person make words that sound normal but do kill self-expression as that makes them seem unlike their peers.  I would hope so.

Thinking the goals of therapies belonging mainly to a specific set through  I don’t know if people even sense the implications. The “non-distinugishable from peers ” goal stands for so much and if someone just threw that out there in random shared space again and again we would suspect they are broken too.

It actually seems like less of an attempt to communicate than most poorly understood (other than for the joke with my dog by him ) things an autistic person says.

It is more of a trigger. Seeming like other children seems desirable at first glance and yet a first is all some ever give it.

The Prime Minister I wrote the inevitable best Prime Minister of Canada had this to say  in 1971 before the Ukrainian-Canadian Congress on the topic of average. While I suspect he did not suspect it would work for autism it does.  I will spare you over half of it to focus on children as it was parents who filed the request so to speak.  He said : What could be more absurd than the concept of an “all-Canadian” boy or girl? A society which emphasizes uniformity is one which creates intolerance and hate. A society which eulogizes the average citizen is one which breeds mediocrity. What the world
should be seeking, and what in Canada we must continue to cherish, are not concepts of
uniformity but human values: compassion, love, and understanding.  ” Pierre Elliott Trudeau- not to be confused one bit with our current Prime Minister… But the Greek Tragedy torments I sometimes play out for Justin …

Another example sort of as by  being very interested to an exponent a lot of what I say on a political theme is 875 levels  harder to understand than this so I could seem to have an impenetrable script going on when I am sure being able to read 150 year worth of Canadian political history with a surprisingly long period of in between eras history … in less than my remaining life span but as physics was my first big love and is hopelessly tangled with religion for reasons specific to me there is bad news…

If one viewed me as unlikely to ever have said anything of communicative value the words of pathology would drip out and as I sometimes keep productive speech in mid “help my Purkinje cells have an empirically validated issue and thus the background noise of my brain is Activate!  Alert! So one more thing or two depending on the day that one is not used to coping with and those topics I love enough to retreat into them on days where I am more self-regulating and the world has no demands and thus no public displays of “Autistics Gone Wild”  happen. This likely would be the Spring Break Edition as when still at an age when those happened they are odd breaks in routine.  A weekend is doable as weekends have their own things.   But this theft of time meant to be held at school and cycled through with bells ( I am old. I think perhaps they do not use them all of the time now and in fact they didn’t at the third Elementary school I went to.  But did again in higher grades

Back to how it works as an analogy.  The “indistinguishable from peers” is a phrase which parents, educators and funders responds to in a frighteningly Pavlovian way just as once notebooks were picked up in mid bell without thought and the mental calculations on if you were going to your locker or not tended to be done freeing you to ambulate without thought to the next destination.   So free that several random things could crop up on say the commute from the third floor to the annex (my locker was  on the lowest level so my brain would have deemed this a no but it was also often filled with garbage by other students so it sent its own don’t choose a pass by the locker signal to my brain .)

Autistic children tend to come equipped with parents not all of whom are autistic and thus a fear that they may never actually crack those codes and help their children who do at times seem distressed enough to create a state when the NT parent responds to this phrase and those that go with it in a way that then  is automatic.

The thing is other than in one case the wiring is different including actual brain cells that are marvels in the autistic the words that people know what they mean are similar. The need for them seems less clear as if say you are me and under stress you might not be able to talk, might talk very slowly, might have a few things you say, or have a lot to say on multiple topics some of which a degree or three would be helpful to even conclude the sounds are not random.    I don’t get to choose where I fall on those lines. I didn’t  even choose the things I would be interested enough to hit levels like these. At one point in my life something related to them hit my then much younger brain and as many of them were not of passing interest all the time and energy plus reading way faster than most ( I was afraid as a child I would run out of books. Then on seeing the books children my age were allowed to take out after pondering if this was a  plot to keep children stupid I wondered about things worth reading. Happily the autonomy to go to the library on my own – freeing me from the tyranny of the school’s rules was granted as weekly with my father would not cut it. )

Pierre Elliot had a point which does apply.  Obviously substitute a word for Canada but this very much applies to why as a goal fitting in with peers is a bad one.  Even if you ignore the whole we will never seem like our peers.  Efforts to stamp out the ways we do not leads to even stranger seeming things as it is much like taking the hand from a puppet.

If I scream Mulroney when I mean danger and Joe Clark when I mean a super hero is needed in the short-term as my kind of heroes tend to get that if they get to the main stage at all.   Well  I would never have gotten to do the things I did as an adult but you,, if you were Canadian and somehow unbiased as far as how things go might guess or might not.

One was so deeply honest that I do hate what process we view as fair does to the honest and ethical few who cross our screens as potentials for high office.   The other …  well more than the opposite.

The reason in adults politics is sometimes used as insight into personality is of course I identify with those who are honest and ethical and content of the need is there to battle it out well when the main field is lost however we can.  I use my dog to create awareness and as a non-shaming opener into if people are registered to vote.  Someone who has been Prime Minister even for 9 months and leader of a now dead party twice (you do not always win the grand battle in an obvious way or perhaps at all but the fight for a nation must go on) spoke to groups of concerned citizens.

I have my best Prime Minister who is not my political super-hero as 9 months was not enough and I have a best Prime Minister who never was (Stefan Dion).. I am clearly non-partisan as my hope which I knew would not win the day ( I have gotten fairly good at quantifying data bits in the sleep cycle of my brain.  Although this ability to know the data points and work with them is the  sphere of a policy wonk who will suspect there is no other kind as they have to know all other  forms of wonk but a data wonk would need a lot  of funding  and while policy does not change to fit new data odds are if you have ever written policy and are not  a big deal yet you will find yourself doing everything else anyway. You know for sure there are wonks to speak to best placement of announcements but you will know where to display them.  You will know what percentage of people respond to alliteration (enough that you may as well as it is less of a wild card than puns) .

These children and adults who say things that don’t seem  like they parse are not unlike others as fields have their own language which is called jargon until there is leakage.

I once did have the experience of being in Toronto (the place they send people to for conventions only I gather some people choose to live there which would make conventions a short commute ) for one issue and wandering into the reception area for a provincial political thing. Okay as politics is my thing that some Federal people were there was clear and a few even recognized me, not exactly greeter wonks if they exist.

An additional confusion even though I was sure it was the wrong province is they make convention type hotels so identical. I have sometimes suspected even down to the flooring and carpets.  Now if I had wandered into something I am not remotely interested in the signs would have been confusing. The overall tempo chaos – this is the case for the mythical normal person too.  Conventions seem like punishment pretty fast I suspect.  I mean when you think okay see parts of Canada I would not otherwise like cadets and it turns out to be mostly Toronto except provincially that will be Vancouver and if I go that close I do not want to be pondering the carpet on hour 7 of a vision statement nightmare.

Now as I mostly understand myself when I hit wondering if there is some odd thing going on with  carpeting I need an out and being fluent in  Re-visioning a Vision Statement  and how non-profits work.  I could raise a point of information that I felt sure was missing (it was) and make a motion that passed. I wanted out of a return trip the next weekend and I thought that enough voting people or perhaps any based on those looking at the clock instead of the carpet knew that you can just approve the pre-existing one.  Now this was not evil as the vision statement and it’s close relative the mission statement remained good fits and might have explained the zero progress on even the first.   Was it speedy and unanimous – of course.  No one likes a free trip and hotel room quite enough to keep doing the same pointless thing especially if they have no way out.

In children they often are expressing themselves and in my experience they may even have an everyday language way of doing it.  If though  someone or multiple people have been introduced to throw doubt or label what they are doing as

A child would say my name and watch often.  She had known given the as many functions as the budget allows watch I had that we shared this interest. Oddly some people owning a watch like mine change to different ones when not engaged in specific activities but then you have to put up with different weights and so on.

She lived in a place where the province only funded ABA and someone had out of  a fairly equally serving hope gone off to do the very short course in it. She had been lulled by the key phrases I think away from the instinct to look deeper.

The only true part may be the first A as it is applied but analysis does not go on. There is a goal and there are ways to reach it.  Compared to non-name brand versions the script is what substitutes for analysis .

So quick to label her repeated approach and statement as both perseverating and echolalia… Well  tenacity is an admirable attribute and echolalia is a fairly useless concept . I  seem to have it when distressed but that would make it meaningful and thus not echolalia.

Now I did point out  eventually that it should be viewed as repeated attempts to socially engage over a shared interest. That would be a good thing and that is the problem with all sorts of scripts and the words in them. They can conceal all that is meaningful or our belief that the words should match what we expect can get in the way of seeing them  as not a symptom but communication..

Communication is two-way and I am not advocating for it not mattering that if only family members eventually understand what the extreme scripts mean, that there might not be an issue that work could go towards.

If you have a traditional family with two parents and well 2.2 children seems a terrifying amount so they have three children and the youngest is autistic.  Now this family has concluded that the current methods are not acceptance based and thus they are trying to avoid all the buzz words and so on. Yet you still have a structure where 2 people have more power than three and 4 communicate much more like the rest most of the time.  They have their own way of saying things and develop code words perhaps meant to outwit the autistic youngest at an age, and experience  disadvantage already there is quickly good agreement how to speak about them in front of them and so on.

For awhile as a child I would call graveyards junkyards. They did seem to have much the same function but that was not why. Where we lived if you went out a bit you would see what were once mostly familial plots now neglected or the burial grounds of a small place that was no more.  Now unable to work out how I worked (one would think the whole I had anything to say at all might work as a reinforcement but alas… ) and on full alert as if this fully sealed in a car utterance might damage my family chose horses to warn each other that they had spotted one.

I love horses. Actually writing this now I wonder as I loved animals period you would think they would have chosen something terrifying like kindergarten teachers (not all of course but my experience was not good and as a child that is all you work from ) or if non-terror was the goal something neutral.

I of course looked all around and inevitably was quick to spot the junkyard..  Most of the car is still asking where and I have said the dreaded word. The words to explain the many things these semi-derelict plots of land summoned were not in me. I think of them so seldom now that I doubt they still are or if they are they would be a books worth.

In  Canada and  a few other places where such a question is not viewed as intrusive and the language does not have a way of asking about how one is and a way of answering that is more realistic and honest as ritually you can just acknowledge things go.  They do tend to until they don’t and save the details for people who care or a quieter moment or whatever.

The How are you script is one.  I am an adult so while I have serious doubts it doesn’t have a negative utility I understand it as things people are used to saying.  Having actually gotten very interested in this around 20 years ago I even can say with certainty that in the area I live in people are far more likely to notice if you simply leave the reply out.  They used to hear fine and move on to “That’s good. ” Now they wait which the first several hundreds of times was panic enough ( I had a middle period where things were set up in a way I encountered it less )   They might actually hear the humourous response or if they actually know you have caught on to how much you hate that question.

I was at a Bat Mitzvah on Saturday and accidentally arriving early (the only way it could happen as I did not get there on my own) after the first wave of people  who thought they might be running on “Jewish Standard Time” a phrase that represents the collective incapability of the majority of the “Tribe” to get to somewhere, into an area or even say good-bye in under several eons.  So that concern over  several people in a row asked the dread question then remembered to recall it.  Progress.

The overall point is when we tend to talk about scripts and autism we mean broken ones. As if they would have to be. Versus ones in a language with one fluent speaker if you ignore the whole they may mainly say words that seem random if they speak at all. All of communication and how people do should  inform that speech is a tiny fraction of it all but we live in very speech centered worlds.

People used to mean rote  taught social scripts or compliance with the main ones and how to get there.  No one who asked me about that meant that and I do believe I have had something to say about those in a post about honesty.

I would be the first to concede that it has to be deeply frustrating.  You have a child who does in fact as all tiny humans do, need you and while sometimes they seem upset in ways that call for fast actions what are they upset about.

That is the natural desire of parents and even having had no kids of my own this feeling when something is clearly upsetting a tiny human of my heart or might is huge.

Of course being disabled means I am a bit allergic to a the child most comply to this or that kind of thing. I mean sure at a certain point and in the right circumstances and worded exactly right  okay that level of ambivalence works best with the autistic kid who if you over-invest in an outcome will over-invest in the opposite. Adults too which I had forgotten until someone viewing me and my primary nurse one admission light years ago waged in a battle over my thermostat, asked her nurse to take me when she was discharged.

She had a brother on the spectrum and thus the specific issue might be different and I actually am not remotely flexible about the ideal temperature for a room which contains a bed and a me that has no issue requiring extremes ( science supports me even) .  Still this usually kind seeming nurse who seemed genuinely concerned if I did not die from not eating the cold would get me.  15 C  not being a temperature where that seems likely and yet  for me this was getting terrifying. I preferred to keep my head under a chair as the fancy beds you cannot even get under…

I spit data and examples of why  you should not sleep in a room that is heated to even room temperature with more desperation seeming more in need of worry which mainly comes down to the temperature in my room .  As my texture issues get worse with stress and a person who has lost an entire them and eventually then some is aware this is not a good outcome hence in theory my willingness to subject myself to an environment like that.

Watching with informed eyes without the usual elements someone saw a dynamic that she viewed as potentially very harmful for me.   If you did not speak English at all I would appear to be in danger and if you do that we both are awfully repetitive but I have more content but the situation would not have resolved without that other actor as the power is clearly not mine but  as my primary was on 8 hour shifts until the change I do have time to get more data which  I actually expect to help.  I mean most of me suspects it seldom does even with people with science degrees but it seems like it should.

The words I am saying are comprehensible although in a panic especially as she would get near the thermostat (oddly in promotional huge signs this ability to adjust it is highlighted ….  they actually changed the lowest they could go sometime after this… Grr .  The power imbalance will always win out in the end.  It’s okay I actually know how to trigger the cooling of the room despite cool air entering.   Takes more fiddling depending on the side of the building and you do need to be ambulatory which can take time or people will agree when you answer the if they can do anything with an actual request (again an actual deviation from the majority of times …. but if I am sick I am not going to decide if you actually want to be useful or are just saying that before you go even if you helpfully add “Before I go” to the mix.

You could need multiple people or one autistic one who is also strong and slightly fearless as far as weighing my need over non-logic based authority.

I see these blogs that are a few sentences and have 100,000 views a day and thus I should wrap it up… I like to write if I feel like it which is seldom.  I doubt that that will happen here.  Still overall versus looking for some key thing that might crack a code consider how many ways people speak every day that would not be easily understood.

I am 49 and thus I have in theory learned that  when shopping being asked how I am is not actually the queue for my research (not at the check-out as that is poor science ) or a queue for me to say what I think of being asked which does happen and I do tend to feel badly as of course I know they are expected to ask and small wins are temporary.  Some stores add “Did you find everything you were looking for?” and I think now that is a utilitarian phrase that might help someone. Not me as I hit the checkout when maximum tolerance for the activity is hit which varies but I will never have a hard to find object in mind as if a person is up to it you can ask the many more employees out there in the shelves who tend to know and as a bonus do not have to page themselves.

Stores seem a venue which just have to make it hard as those that ask this have a follow-up question and it is How are you or a variation that makes sense  as it doesn’t following that yet not all stores seem to get that even pretend concern for a stranger that is not in danger other than perhaps escaping without having spent more money  cannot come after utility.

It sounds odd every time and try as I might to give positive feedback on the useful bit even if not for me ( I do care about society in general or I would just give up but that does not seem to be in my skill set or 49 years of defeat might make me think I could . Not on this topic but all of them.  Country seems like it might make a shift away from so centrist outsiders see it as boring to arms – well pens, photocopiers, board rooms, and so on.   Although for that one there are times when even if you suspect a bit after most people have fled that this is yet another windmill tilted at  this phrase is supposed to mean hopeless.

For me it is more of an inspirational bit. If you tilt at a windmill. That is attempt to joust with one it will unseat you. The windmill tends to win.  Now sometimes people use this too soon and they are wrong.  Still there is a phrase about getting back on a horse which makes me wonder why this is not a motivational phrase for others.

Some windmills are worth a good effort and yes  you may have to get back on your horse a lot or while on the ground you find the means to mess up the workings and you only need to fall 47 more times to get enough of it in the cogs to end that match.

My scripts about scripts may be broken but tenacity being a bit key  if the reason for wanting to know more is concern and it was then that over time how the individual expresses or does not express themselves will become clear.

My  dog has a specific position for in his opinion I should not get up. Not an overall desire of a pet to keep their human close as my dog is far more but one where the third or 23rd time I moved him and then fell in a way that could not be attributed to lateral instability or any other thing I learned do not move the dog. He has another one when he is angry that Swedish exists but torn because he does love Netflix.  He has yet another for my human is explaining that given no human he knows speaks the dialect of Danish on all shows I have seen so far, and  The Bridge is still in production so unless a word that actually does mean the opposite in Danish or something else entirely comes along (hardly any and he would have heard enough jokes to want to choke someone if he were a native Speaker of Danish )  this seems extreme.  Also as for awhile he was launching the app himself ( I was trying to avoid typing so it was pretty easy as I had a second screen and that was the only icon on it… As big as I could make it.   Okay compared to channel surfing which he also does launching and app is a bit harder maybe..

Now my dog is not like most dogs.  He is after all a dog I have had since he was 8 weeks old and thus the amount of development his brain had as a bonus feature of me must be up there.   He developed a very extreme grooming phobia a few years ago. He was never a fan but tackled an item per day it was possible

His nails are the worst and thus the whole dog suffers so we are on a paw per day when all other things are at least not falling apart. Now when he was upset and in between so wild he cannot be expected to know who I am and all that a familiar kind of setting as he hits he might other people and other dogs as he is calming slightly “Good Boy” and all the things people say to other dogs.  Mine does not speak he Converses but as he is a dog that I never labelled anything correctly ( I paired all the must haves with a sign of course as best practices in puppy  rearing suggest….  ) Ready for bonus content on day one while I was hoping he would say something that would get him commercial work he began to learn about politics . While he can say two words or a word and a half more accurately  they are in Hebrew and Aramaic (hence the half)  . Not coming soon to a commercial near you although  stunning support workers when this developed…

They seem equally  as stunned by what will either be  lengthy on Aramaic speech   or reasons why the dog knows what I mean as I asked for the beginning of a specifically named prayer in Aramaic (  Aramaic is used when we say it but it is always explained in a service which I find odd the days everyone there would know it but people do get used to saying the same things at the same time. )

So my dog stuck in his hard cycle where he is still upset but worried he has hurt me I say the names of  bills too. Prorogation works very well and the voting record of our current Prime Minister before becoming one is pure calming gold. Now if you knew nothing of Canada or how systems of government which include prorogation (grr…  My dog) work it would seem like a script and one for  an  extreme need even. I need the dog to understand if it were legal I would find the groomer who made it this bad and do something similar to them.  I need him to know I am not mad about what he has done at a time when he was in between states so he regrets doing it and knows he has.

He and I have a language and body language system that goes both ways although being less used to it meaning something  as I am a cushion to my dog anyway I was at a disadvantage.   If you knew I had a diagnosis then the odd things I say to my dog could make sense due to that not due to knowing that he is very used to those phrases and will return him to engage the voters mode which is better than terrified  two different ways.

My benign intent and even that it was working and that someone else would say the wrong things for him .   He is the product of his species.. his genes, his brain before I got him, the rather more stimulating situation I provide a dog, our shared experiences and so on.

It can be easy to doubt that early on if you are an NT parent of an autistic child… But you do have shared experiences you just archive them differently and they might mean different things . I would guess some people wanting to know what their child means when they say lunar rover while seeming distressed (random example) might really want there to be an autistic Rosetta Stone (the real one not the product ) .

I sometimes feel at an unfair advantage as their have been times when meeting a child for the first time everything is just so much easier. Okay it tends to go that way. But all the pesky bits of communication that are not speech have a different default setting in me. I do not consciously think about how I do things other than some make sense for the size say of an individual child or that I do things in what might seem to call for more drastic action in a non-drastic way.  ( Child has fled the comments non-related, non-close to the family adults feel they can make and what they are judging him on means a lot to him as of recently when he realized this was a role he had.    Entering his room his distress is obvious and he may be ramping up.   I have watched people try to  stop the pacing or the 4 different topics or whatever for other kids ..  I got low to the ground and eventually  his pacing turned to spirals and thus when he leaned on me I could say the only true things . Not that it would be okay because how would I know …. That he was important .  Then what would happen due to that  so that when and if he came back  the big deal things would be waiting.

People are so used to stock phrases that they can be hard to recall even if you know that he might go off in a way that could be physically painful if you lie. I have seen him and the equally stunned issues of why and they were trying to help and how was what the person said even a lie…

I mean if being looked to for a post kick to a body part that well hurts enough that the testimony to the desire to understand that it is to ask when eyes are still watering… doesn’t mean that the set of things a parent says or how they act is wrong so much as a poor fit and that the right fit is a long process .

Like my blogs. No short answers.

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On Black And White Thinking and Other Annoyances

When I state my opinions about some things if the audience knows I am autistic I sometimes am rebutted not by their own opinion but that my thoughts are the product of black and white thinking.

This baffles me on a few levels really. While I understand someone out there (well numerous someones) has characterized autistic thinking that way do they think we are incapable of seeing the views in between? Or for the sorts of things people go around having opinions about that some waving around between positions is even a good thing?

Here are some things I am black and white about –

You can’t kill people because they have a “horrific” label like autism

The group I call Voldemort Speaks needs to disband.

The world needs more acts of love and less talking about love

Honesty is the only policy.

Every human not only deserves dignity and respect but society needs to make sure they get it.

Most people are smarter than the experts think.

Speech is not the sum total of all communication.

Being able to speak does not say anything about other competencies.

Well that’s the short list. I could go on of course but I would enter the realm of my own life to a degree that would leave people a bit too baffled.

My main problem when I get dismissed by this method because labeling it black and white is a fast way to end the conversation is that just because someone thinks it is so, and even if it looks that way on any issue I care a lot about it is apparently so hard to make another case that we need to queue the oh poor her she can’t see other opinions.

I wish that were the case. I have had other opinions acted out on me. I have seen them acted out on others. Since they did harm I would think people need to be a little more shades of grey overall. Perhaps it is some terrible neurological affliction that the unlabeled masses have that they sway all over the place over fairly short spans of time. I don’t really know but I do know that being dismissed on things I think a lot about with any reference to my autism is frustrating beyond words.

Just like if there is a communication problem that involves me I am not always the problem. This one comes up a lot. Granted sometimes I cannot communicate by the usual methods. Sometimes I need break from those ways but when I do communicate very clearly about some issues I doubt it is my problem if someone spends 8 days trying to change my mind. Good luck with that would seem a bit flip I guess. But is it so radical a notion that having lived as me for 45 long years now I might just have a better sense of what is possible for me any given day than someone who has the joys of managing me as a case? I think yes but majority opinion says no. That I will never sway any of them to my position does make me wonder who exactly is more firmly entrenched in if not black and white thinking at least normative institutional thinking. I am the one with more labels than seems reasonable so of course I have no clue about what is good for me or what is possible. All health care and service provision seems to operate from this stance even though when I was a service provider I am pretty sure respecting the client took up a good chunk of the handbook and the attitudes questionnaire and screening essay questions.

There really is a right and a wrong for more things than humans tell themselves. Sometimes it can be fun to be a little bit “bad” of course and those sort of behavioural deviations from the straight and narrow as they call it are not a big concern. What concerns me are bigger moral issues.

I have written about lying before. People I think refuse to give me credit for being honest as in theory I would be a terrible liar. Yet I could have learned to tell the kind of social lies people tell if I believed that was a good route to go. I spent years actively resisting social scripts deemed useful and even enlisting converts to the whole living honestly.

At this stage in my life the only way it has backfired if you can call it that is people often seek my opinion who otherwise may not have. Rather tangentially related to my life people suddenly want to know things out of their confidence that I will tell the truth and other people will be nice when being nice won’t be helpful.

I do not consider it a bad thing that my integrity is not eroded by the accumulation of social lies and the slide into more ambitious ones. I don’t think it is a product of my autism as I have been lied to be autistic.

When forming opinions past the information gathering stage, which too many people seem to skip, I do consider the extremes of the issue and work out my stance sometimes over years. If someone then sums up my opinion as not worth entertaining because it is black and white then yes I will question this whole how useful is to socially engage thing.

I belong to a group that has been catastrophized to a degree I didn’t even think possible. People’s notions of autism when I was young were not that accurate but the kind of hate that is directed at the label now should really be considered criminally unacceptable. Many countries have laws against hate speech and yet it continues to go on. It inspires violence against autistics and when the worst case scenarios happen, that is when autistic people are killed society tends to champion the killer.

We could use a lot less grey here I think. Sometimes my autistic peers have a laugh at the whole society seems to have forgotten we are actually human but there is an underlying sadness in our games. Games that the experts also say we are incapable of but hey my opinion on anyone thinking they are an expert on matters pertaining to people other than themselves is not exactly high.

I try to live in a way that does good. Sometimes people are offended by it but I take the long view to that as occasionally in being offended it sparks off a thought process. I know I am not right about everything as that would be very obnoxious and like a good debate but on matters that boil down to the application of ethical values it is hard to see how firmness is a bad thing.

In matters less vital of course I slip and slide. If I applied my mind to making a position on everything I would run out of time for pretty well everything. The dog in my life knows my positions with regard to him that are thought out are I do not own him and he is not by being a dog entitled to less thought about his needs than I am by being human. He does milk these positions a bit much as he seems to think that means he can get away with just about anything but ours is a close relationship so of course there is give and take. I have told him that he should try and support himself but he plays the dog card there. It’s a work in progress.

Opinions on autism change and will always change. What cannot happen is for the masses to forget yes we are still people. We are still entitled to any right or protection normally given to people in our areas and so on. If someone wants to call those opinions black and white go for it. I will still hold them. Even when actions by the society around me make me pretty sure they forgot some of this I will keep underlining those positions.

If you want grey here’s grey. Currently most aspects of my life are pretty catastrophic. There is o denying that. That does not mean that I am though. There is a distinction. It is a source of hurt that some aspects of my life are artificially difficult. That is the means exist to ease some major stressors almost instantly but the powers that be or society at large doesn’t do it.

For 23 months and 1 day my life seems to have plotted how to break down in as many areas as possible. My body is it’s main co-conspirator but it was ever thus. Most people who know even half of how bad or plain weird or almost absurd it gets can’t quite wrap their minds about it but in all of this there are times of joy. Less than I might like but they exist.

I laughed doing my work in the wee hours of the morning. I laughed at a few other things. I also cried because life is not easy but it is a life. A human life. While a colleague did say I could be an AI the other day that wasn’t dehumanizing so much as a product of my distance from my place of work so while a few people have spoken to me no one has met me. We shared a good run of AI related jokes and I went to sleep.

Whatever happens one stress I do not need is the steady clamour of propaganda telling me how awful autism is. Telling me all sorts of lies. I will give them my life is hard but as they are about 18 percent of my current stress if they would just shut-up it would get slightly less so. As they feed too many opinions who knows how much of the rest might go away?

I have seen my blog mentioned in a few random places to support ideas I do not support. That is by granting yes I have a disability and yes my life is hard at times, even very hard somehow everything else I have said about my life doesn’t matter.

I studied psychology. I had to study the DSM for longer than anyone should have to I suspect so my notions of what can be said about any person’s autism and still have them fit diagnostic standards may be a bit rigid but it is a rigid format. I will never be someone who says my autism is only a good thing because if that were the case technically I would not have it. Currently since the issue that started my 23 month cruise with instability is most certainly a byproduct of autism, and some of my more major bodily malfunctions are not aided by it I can’t swing to that extreme.

I guess the only good function of Voldemort Speaks may be that it makes me a moderate. By saying I am autistic but I am human. My life matters to me. I should not have been prevented. I struggle but show me a person who doesn’t. I struggle harder than I need to so please society try harder to remove barriers and problems that don’t need to exist I am moderate in comparison. I know they view all those statements as radical but that is their problem.

It gets gritty in the trenches of being me. They are most certainly trenches right now but it is fun as well. Chanukah just brought me more days in a row of being dragged from my home than seemed fair but also laughter and latkes.

I suspect any day now that an accident I had and didn’t know about for too long and then couldn’t cope with what it takes to get it seen to will require surgery. So will several other things simmering away as I said earlier by body is my life’s main co-conspirator but while definitely lacking the capacity to deal with it today I either will or dealing with it will be thrust upon me.

In the meantime there is my dog, the internet, my work and tomorrow. I suspect all four of them will serve up a spectrum of delight and agony and everything in between collectively. I enjoy the dog, the internet and perversely my work so I guess tomorrow is the main suspect in the lineup for the gritty bits but not a lot of point of subtracting any happiness from today just because eventually a lot of unpleasant things will need to be dealt with.

Since I am being radical what with the liking my work and insisting that my life has value despite the indisputably hard parts would it be too radical to suggest that for the issues that matter most everyone try to be a bit more binary? There is a place at the table for dialogue but not propaganda I think. Attitudes are a potential thief of joy and the world needs more joy.

People often think my own attitude needs adjusting for some reason but it’s about right for the life I currently have. For some reason many people also regard me as a pessimist but on the things that need to change front I think I am pretty optimistic. While there has been no sign that society as a whole will suddenly see me as just part of society as a whole say the bits could improve for that to be normative behaviour.

In my city locals do this thing that people often ask about. When it started I was perplexed too. I had to defend it to several people when I was still thinking okay it is illogical but it seems to increase happiness phase with it. People on exiting the bus say thank you. Everyone does it unless they are distracted. It’s not rational behaviour in a way as of course the bus driver is paid for this exact thing but it makes the bus a better place. Which in a weird circular logic makes the bus driver (or the population at large) worth thanking.

So what if people could change normative behaviours about autism? Stop reflexively supporting Voldemort Speaks because of all that good they supposedly do. Stop believing my life is not valuable. Start doing something as radical as treating all people in ways that recognize their humanity?

I don’t really see how any other position makes sense of course but then again I have a “problem” with black and white thinking,

Well he's black and white some days.

Well he’s black and white some days.

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.

 

 

 

 

 

Enough with Making Distinctions.

In the past weeks blogs everywhere have been exploding with critiques about the group I refer to as Voldemort Speaks. While it’s enjoyable to see more metaphorical allies take the field embedded in a disturbing number is the notion that one of the reasons what is being said about autism is wrong is that it is a spectrum disorder. Which it is but that doesn’t make it an ethical point.In the worst case scenarios some go on to say some people with autism lead productive lives.

I say worst case scenario because the group I don’t name is an offense to humanity. If I never wrote a single thing, or read, and if my diaper had to be changed and so on any portrayal of my life as a catastrophe, an affront, something to stop would be wrong. If I, improbably now wind up with a PhD someone pointing to me as a beacon of hope would actually be quite wrong. It isn’t usually thought of that way but it would be.

It may be an advantage of black and white thinking to see that. Every time someone refutes not only Voldemort Speaks position this way but other like minded groups, they are shoring up some disturbing notion that there is a line a human can draw at which point another human life no longer has value. I never did master the complex social skills that lead to procreation. I have though hunkered down wrapped around lives that most would view as pure misery, Wrapped around quite literally in one case as the level of uncontolled seizures that his body endured could break bones. He was at the limit of anti-convulsants that wouldn’t also kill him so there some person had to lie. He had to be held always for the same reason. He could not see, hear, speak or move in any non seizure related way. I hate to think what Voldemort speaks would say about him but thankfully he didn’t fall in their area of non-expertise.

His family, while capable of the humour that goes along with the notion that their son’s only activity was seizure activity, always treated him with such dignity and respect. They belonged to a culture where as the eldest son he had a status over his siblings and  they were affluent enough to purchase the trappings of a little prince for him. He was treated that way. His father would dress him in silk pyjamas and read to him as if he could hear (many years later when fMri’s came along it would be concluded he did indeed hear something against the expert opinion until that day) I had become as someone young, and strong, with experience with medically challenging children the last hope often of any rest from truly around the clock care. I saw lots of people in situations who if anyone could lay claim to the catastrophe vision of their kids lives those people could. Yet they didn’t. While that boy occupied and extreme so too did his family. The presumed competence well before anyone was urging people to. They did it naturally it seemed. They were worn out and tired and hoped for the sake of their other children to be able to close the door on their son’s room knowing someone quite literally had his back.

I don’t know what private demon’s they had fought to reach that state in the face of everyone telling them otherwise. His father asked me once if I had seen “My Left Foot”. I said I had. He went on to say it could be possible that trapped even more deeply inside his son there could be a genius. His father was a brilliant man. He and his wife could no doubt produce one and nurture one but the neurological reality for his child was even if that had been the case new destruction was being done constantly. The human brain is resilient but actual genius is a territory rather rigidly defined and while I had absolutely no argument with treating every human as if they may be one on principal as being preferable to defaulting in the opposite area the notion he could be and would never have the physical capacity to use even the most futuristic technology to express it was a horrifying one for me. Not clearly for his father so while I found it a scary notion I didn’t question why  he wanted to think that. It worked. It was his son and his view of his son and not mine to question even in the awkward position of someone point blank asking me if I agreed and being truthful to my bone I couldn’t really have an argument about it then beyond the nagging voice that wondered and if that wasn’t possible what then? As the movie was recent back then I suspect they would have been as steadfast but logical people tend to need a reason so my suspicion is they would have found another but I cannot know as I was not them. I would not presume to know what it was like to be them. I could only know what it was to care for their son. It was inspiring but not because he was rising above anything in inspiration terms. He is not much altered now from how I first met him beyond being older and now with hearing aids.

They were the most unquestionably, loving parents I had ever encountered. It no doubt helped them when staring down any expert that they were both well educated. I was troubled by the hint that some of what drove his father may have been the notion his boy could be a genius but it seemed unlikely that was anything other than a new motivation as he had asked if I had seen it not read it and they were clearly practiced in the art of presuming competence. They were the only family to ask I attempt to teach a second language to their child. I was used to having to defend wanting to teach the alphabet which didn’t seem like an option here as his hand could not be dragged though anything without caution.

They explained they had noticed their son was his most relaxed during his bath so during that time if I could work on 20 key words from their native language that was likely the best time. I was dumbfounded really. He had at the time no receptive facility at all let alone an expressive one. Years later with a lot of amplification some sound was getting in. I didn’t even work with him by then as he was too much of a challenge for my arthritic body early on even though I very much wanted to. My longest term client remarked to me having somehow remembered that I had worked with him as that had been at a time, when no one thought she herself was taking much in, that he could hear now. I asked her for details which she couldn’t really provide. She said well he has hearing aids now and sometimes he smiles when you talk to him. They like all the chocking risk students ate together so she knew this and was willing enough to talk to him although until that year it had seemed an exercise in futility. His bath had been the only thing to previously get a smile out of him so this was news indeed.

The catastrophe model of disability would have both the client who provided me with an update and the boy she described essentially as only burdens. That one did learn to talk, read, and write and use the computer in no way says to me that her life has more value than his. That I can talk most of the time if I talk at all does not make me better, that I can express my thoughts does not devalue the lives of those who cannot.

Both these children met ethical criteria for being euthanized at birth. They never called it that though. They always said that they would be kept warm and clean until nature took it’s course. That they would be hungry and thirsty never seemed to bother people. The client who was by far my highest achiever had a father who wanted this for her. As far as I know his position on it never changed. He had declared when her mother said no that should she survive he would never spend a dime on her care. Oddly enough this very position made him quite motivated to make respite care easier to access and funded. He was loving in many ways, devoted, but stubborn on the whole should she ever have lived concept.

I couldn’t grasp this either. Not because at the time his view point was first articulated she seemed necessarily likely to “amount to much”. I suppose to some degree my failure to grasp it may have come from having been another devalued life but not entirely. She was my first respite client and the author of my future years with children quite a bit more severely challenged than she was. She was also my last, despite a desire by the agency that employed me to cough up kids and adults more suited to my physical needs recently.

I never encountered any who were not human. That seems obvious but clearly not or why would anyone seek to lay out criteria by which they could simply be left to die of thirst or the consequences of treatable medical issues? Right now somewhere on the planet people who meet the dubious criteria of being high risk for having a child with autism are being urged to abort sons. They ignore the science that would suggest that very high risk group has as much as a one in two chance of having an autistic daughter. That anyone would think it was anything but an exercise in pseudoscience to tout this as screening for autism when it is nothing other than selecting based on gender will no doubt fall apart in the court of law in a few years when someone files a wrongful life suit. I use risk only because that is how it is described. Not that I agree with the terminology.

Wrongful life. I am told I could get some compensation from the producers of a pharmaceutical my mother took to ensure I was not miscarried. I could get more than most I am even told but to do so I would have to say I fall into a category of people who never should have been created. That the deficits linked to this medicine one of which is fairly central to who I am mean I should not have lived at all.

Since I snuck into the world seeming like a miracle as no one thought I had survived what looked like a full miscarriage made my parents so happy for not very long. I was escorted home gift wrapped in pink. My father had told the neighbours if a pink flag went up to come for a party but if a blue flag did I was a son. My brothers are typical or at least fairly typical. The lack of celebration for a son was not due to any fear about what that might mean but simply they had tried for a daughter. My mother wanted a daughter an unhealthy amount no doubt. She had visions for me like I suppose all mother’s do that I would never meet. She was worse than most about hiding that but did improve with time. A long time. A life time but effort is valuable.

My mother was more prone to believe what people thought about people like me which at the dawning of the 70s was not much better and in no way more accurate than the current catastrophic narrative. Having read I was incapable of loving her I may not have seemed worth much investment. It did to be sure make my own journey with what love means considerably longer.  While evidence of my developmental delay can indeed be found in my pediatric chart so unpalatble was everything that went with having autism that I learned after her death my mother who had never uttered the word had told some people in recent years I had Asperger’s. For her that was progress and no doubt she viewed that as less grim despite every bit of science saying in people like myself there is no identifiable difference within diagnosed populations. Even if there was so what?  They have changed what they call me 5 times now in my life if we count the flirtation with notions of residue.  How would you like to be summed up as that? It seems a word usually used in unflattering ways but to be residually autistic was supposed to be great. That there was no actual thing didn’t seem to bother people or dawn on them. It was a brief experiment. That annoying people like me back skid into the more obvious variety pretty constantly even if they could read and had periods where they seemed almost undetectble from peers must have been annoying.

Back sliding is really the terminology they used as if being normal is some fixed point. As if enjoying yourself in a meaningful way were a return to something less desirable. Yeah so what. I stare at my dolls and stack my coins. If you want to extract a lack of imagination or play skills from that question your own competence. I said this in much more academic terms in a review on the literature on wheel spinning (I would have looked at play more widely but such a staggering amount of time has been spent trying to work out how to teach kids to push a car rather than spin their wheels it would not have been possible to get an A plus if I ignored the vast quantities of research there. )

I would never have taken it up with my mother how there was no better, and that to grow up knowing you had somehow failed by simply being given a label was an actual burden not the hyperbolic variety. A child even one who people doubt their ability not only to recognize emotion but to have them, is not oblivious to the pain they seem to cause their mother. That’s the problem really as much of the pain is purely imaginary. I could in fact love her. I do love her. She has died but despite being labelled in scathing ways by many she was the only mother I can have. I have had other, healthier maternal figures who did model unconditional love for me but she bore me and lived with the pain of a constant anxiety about my well-being. That much of the initial confusion about what I could and couldn’t learn was founded on ever changing notions doesn’t undo the harm those notions taking root causes.

Like any mother she did her best. Like any mother she was subject to notions of what goes with what people think about her kid. It’s definitional for mothers. Not that they go blindly along with it but that they do care. That my brother could handle a full table service before the age of 3 was also something that mattered to her. He had to as his was a more elegant time and place.

Having autism has more often than not been too hard for me. The most successful thing I did this week was a mad dash into a store to buy the three items I could get without risking coming so undone someone thought something needed to be done about me. A real risk as I was not capable of meeting any social convention beyond sticking my debit card in the machine and hammering out my pin before fleeing. I am not so oblivious as to not notice in my peripheral vision that makes people uncomfortable. I no longer care as their social discomfort at having to see me is nothing akin to needing to go there. My doctor had urged when trying to be useful to me that if crossing the street and entering the store was too much I could go to Subway (a sandwich place) and get enough for three meals at a reasonable price and safer. He too is not oblivious to having to dispatch me almost without useful support, week after week. His concern when laying out the whole so you will cross the street, enter the store, get a, b, and c, pay, leave and go home plan was evident and he faltered and offered up the alternative. I said in the kind of comment often taken for humour that for the kind of heroic effort entering anywhere was going to be I was not coming away with three meals worth of food.

This was hard. This is the sort of difficulty though that could be remedied with resources that do not seek to change me beyond making things less stressful and healthier for me. A single hour a day of someone who was actually allowed to help me shop or go shopping for me would be life altering. The only way to get that right now is to enter a program that would entail a change of doctor. He mistakenly thinks I have an abandonment issue rather than a change one. Pretty sure I do know the difference and  I do honestly think he is right to think he is more useful in his usual area of expertise. He just has the misfortune of being the only hired help person to not have changed in the past 20 month so to me changing him out at a time I can’t even be counted on to do something so routine as crossing a street and entering a store seems like asking for new complications.

I’m an adult. Most people with autism are. When I read notions of not being able to house autistic children becoming adults from my slummy place it’s hard to understand where people are coming from. I am not cute. I am downright rude at times if a person opposes me in a fundamental way. I have needed to be. I am not all that sorry as it has been a useful skill.

Like every adult I was a child but unlike every adult sometimes people still do treat me like one. Sometimes it is needed. I was not bothered by my doctor taking more pains with my plan for the immediate future as someone could come along and question his competence if I had managed to die in pursuit of bread and milk and bananas. I was happy to see some sign he recognized this would be hard as sometimes I feel like I say things are hard and he says I know but nothing changes. This at least laid out some of the trickier bits. Acknowledged that the bigger store might be well beyond me. It was since two days later I consider myself to be recovering from that. It had to be done though.

No doubt someone is wondering how the heck can I say all I do here and not be able to do something “easy”. What’s easy is always in flux. Usually hanging out with my dog and computer are the easiest things of all. I actually had a home supporter worker (I get 100 minutes in theory a week)  asked if I had eaten today which in 18 months of having them this time, no one ever had. Her time was up but she asked and asked if she could make me something. Technically without having bathed me anything I couldn’t make for myself she is not allowed to do. Strange and arbitrary but true. I am also in theory supposed to help her but while that was always emotionally exhausting now that it is also physically so I get a pass on that one. Since my beloved dog is a safety hazard, and must remain in another room at all times merely because he is a dog (imagine if a dog could have autism. Oh the never ending supply of untruths they could rain down on his tiny head) and I am not willing to subject him to the torment of having me out of his sight bathing even when it was needed is not going to happen. I fell a scary amount of times a few months ago because my little safety hazard needs to see me but he is my primary support I almost said person…  He is my constant and devoted companion. In a world that looks at me strangely,  views hospitalizing me when I get sick enough from totally avoidable stressors as somehow more the done thing than say providing more and much cheaper support, my dog is the most useful support I have. Don’t tell my doctor but my nagging abandonment issue is based on Shadow’s furry life span issue not any human being coming or going especially those the government pays. I tell him he could have done better for his human. I secretly do doubt that though as I sometimes also joke if not for the spiritual and logistical issues with being reincarnated as my dog that’s what I would be in my next life.

The problem is like for every human I know of 100 percent for sure this is likely the only life I have. It is because of that sacred. My casemanager was a bit flumoxed when trying to bring visions of eternal damnation into play should I think of killing myself when I said oh technically Jews are a bit vague on the afterlife and there was no such thing as eternal damanation for us. She seized on G-d as if thrown a  lifeline despite her professed lack of belief.  I had to explain well yes of course belief in G-d was fundamental but not this weird one you couldn’t fight with about things. That by definition a Jew struggles with G-d so in theory I didn’t need to submit to some other person’s version as G-d as the struggle is the point. Yes we have a few rules. All of which can be broken to save a life. There is no added exemption clause for a life like mine. I am here so my life is sacred period. No buts.

Without my faith and it’s community I may have killed myself or died from contemptible neglect of society to my needs. Sadly they use the fact my faith community so strongly helped me when it was most needed to actually further excuse any assiseance that I am technically allowed in policies that are enshrined in law.

My life, however hard, is not just as a spiritual matter worth saving but as an ethical one. As is every life. On a purely spiritual level life or the worth of a life is simply not ours to decide.  On an ethical one that works for me too actually. Any slide from a position that all of humankind is equal and equally deserving of the things that sustain life if not one that people subscribe to as part of their spiritual journey, is it too much to hope some of them appreciate the danger they put themselves and others in when they depart from that point?

Returning to autism. The fact that some do become taxpayers is not the reason we say to Voldemort Speaks that no  you may not catastrophize our condition and rob us of our humanity. Please no one ever think I am more deserving of not having my humanity ripped from me than someone lying on a mat in a developing country who never says a word. If you wish to oppose this group please do so but don’t grasp at things that by your having reached for them devalues people.

About my “About”

In the wake of my quiet little blog seeing a surge of traffic on a post that had already lived the lifespan of most in my blog up until then – two days tops – a lot of things came up that I thought I would be addressing.

There were the obvious ones arising from various comments in places where it was re-blogged and here. Was Voldemort speaks really still so bad? Can a parent cry about there child and still be accepting of their autism? Is support in any form preferable to no support and so on.

Then there were the issues of feeling a sense of responsibility I didn’t feel when only a few people who would read anything I wrote read my blog. Sure the occasional person stumbled in off the wilds of the internet and some pretty bizarre search terms but for the most part it was quiet. The people who came didn’t comment much which in a way made it quieter as I have a lot of problems generating ideas of what to write about next.

Suddenly there was too much to say though. I was grateful to those who made a point of saying how I had influenced their opinion or even where something I had said had helped their child in some specific way. I was humbled that the blogger at :   parentingandstuff.wordpress.com would go from such such a pro Voldemort Speaks position to almost instantly say they had been wrong. It takes courage to say when you are wrong on the internet when everything is forever. Courage to resist the temptation to quietly erase the signs of thoughts you had articulated but have already rethought.

So an avalanche of re-blogs and ping-backs happened. So many that today I saw on some blogs that some of my earlier followers were being made aware of my blog.

I wanted to warn people that not only am I not the consistent of bloggers but that very process of writing that one person referred to as like a freight train doesn’t always result in a piece that can be posted. For the most part something captures my attention. I write until I am done and I am not always done in an orderly manner at all. As often that train like process builds momentum but then goes off on several sidings and a dozen half bogs are born until I save them and surrender for the time being.

Since I have enormous respect for people who say they are wrong right in their blogs. I will get my own out of the way. I was wrong about how my comment would be received that triggered the influx of traffic here. I was afraid it wouldn’t even make it out of moderation and had already sought back up from someone in the “parent camp” to try and make the point I was pretty sure I had failed to.

I backed up my comment as I posted it not really expecting it to escape moderation. I was completely wrong about that and in the process of being completely wrong about that something else came up that someone felt I was completely wrong about.

Someone expressed that they were highly offended that my “about” says I am an adult with autism. That alone apparently making me not worth reading I guess. I had committed a grievous sin of separationist language.  Like any community the autistic one has norms.

For those new to the politics of autism seperationist language is undesirble for the most part because it reinforces the notion that there is a person seperate from their autism and all the things I truly do loathe like the notion one can love a person but hate their autism and so on. I think I have made it pretty clear in everything I write that this is not a position I hold. Still there is a norm and I strayed from it.

Long ago many of us had to stand up for the right to call ourselves autistic versus person with autism. I am old enough to have been there when autistic culture was truly in it’s infancy. When each of us was fighting that sort of battle in whatever other arenas we ventured into – the options being much different then they tended to be limited to IRC channels, mailing lists, and newsgroups and of course real life.

Everything I have ever written about my autism is true to the ideology about why you don’t separate out autism from your being. I’ve always been quite clear that there is no non-autistic me. That the very nature of a pervasive, neurologically based, development disorder makes this impossible. It also means should that magic cure ever appear it would not be possible without curing me of being me. I don’t believe such a thing to be possible and as the price is my personhood I wouldn’t accept it. That too I have made clear I thought. The closest I ever came to being banned from an open autism group was when I objected to the notion I would be perfect in heaven, perfect being not autistic. I was genuinely distressed at the very notion and being younger while generally Jewish views on reserection are a bit sparse couldn’t reconcile that with being as G-d intended me to be. I did manage to get myself banned from a group for females on the spectrum for being too low functioning but that’s another story.

The choice in my about is largely stylistic. It’s quite similar to my IRC bio and contains a string of withs that it is simply awkward to make into a grammatically sensible, smooth flowing piece without them all being withs. Since people who interact with me know how firm I am on the topic and that I refer to myself as autistic and to my fellow autistics far more often than any other phrasing it wasn’t a choice based on ideology at all.

Had it been based on anything other then the smooth flow to be honest I may still have chosen to put it that way. If the aim is to communicate in a way that builds bridges of understanding knowing that the majority of people have been normed to regard non-person first language as wrong and certainly having had to defend myself thousands of times for the non politically correct choice I may still have chosen to go with the wording I have. It wasn’t a conscience choice but knowing that the people who need reaching with my version of what it is to be autistic are not by and large my autistic peers or their friends but those firmly in the clutches of an autistic narrative spun by Voldemort Speaks and other tragedy model organizations I may have chosen it to extend a gentle hand. To not have to be in your face immediately before someone even considers reading anything.

How we phrase things does indeed influence thought but back when autistics were first getting the chance to come together as a global group and the sort of forming, storming and norming that all groups go through would happen this day seemed far away.

So used to having to defend the choice of autistic over person first language, so used to having to reel off the whole long ideology the day when someone might be highly offended at first glance and never really reference the thoughts behind it seemed like it would never come and now that it has like any ideologically mandated limit on how I express myself I am not sure it is a good thing.

The extremism of their being a single right way to portray a reality is no better coming from within than from without. Just as being kicked from a list of people on the spectrum based on people’s mistaken notions of what it means to have been diagnosed with autism not Asperger’s and thus too low functioning isn’t really more palatable  than being thrown off a largely parent driven list. (Again for those newish to autism an exclusion criteria for a diagnosis of Asperger’s is of course a pre-existing diagnosis of autism. Asperger’s was not in the book when I was a kid and well it’s in it’s last month of being in the book now. While it was in the book there was a subset who chose to define it as the best kind of autism to have or the mildest when there is nothing in the definition to suggest that concretely.)

To think I must always phrase things a certain way and any deviation from that expression will not be tolerated well at first I had a sort of “whippersnapper” reaction.

That is being old enough to actually have had to sign and have a loyalty oath administered to see the internet in it’s military only form, having been there near the dawn of autistic culture and part of the group who was articulating these ideas to one another on a global scale for the first time ever I wanted to just dismiss the objection as being from some young lad who didn’t even have to fight that fight to the degree the older part of the adult community did.

I was prepared to take offence. To challenge his right to object. Even to sink so low as to enumerate the many ways the contents of his own blog offended me but when I calmed down I realized that what I was seeing was in some ways a coming to fruition of a hope I had articulated when all that was first starting. That computer and the internet would help people with autism so that the next generation would come to things from an increasing position of strength.

I sometimes read what I thought about computers and the enhanced ability to communicate both within the community and without and think I was overly optimistic. But looked at as something other than a criticism levelled at me by someone who neither knows me, nor read enough of my writing to know how clear I am on the underlying point, this was a person who was so strong in his conviction that autistic was preferable he didn’t have to defend that with the paragraph upon paragraphs that used to be necessary. So while I don’t agree that I don’t have the right to some variation in how I describe myself, or that variation is never desirable even the certainty from which he launched his attack is a big part of what we hoped for for those who came after us.

I’m not a fan of compliance though. Or blind compliance and I think a call to obedience about a semantic point that is as limiting as saying one must always use person-first language, while admiring the self-confidence which with the position was forth I reject it. Once a community hits the point that blind adherence to norms is expected some re-examination of the norms is in order. Being stubborn and not someone who complies for compliance sake I am obviously not going to be embraced by those of my peers this is important for. I say that knowing precisely why it is important but think the message is critical and strong enough to stand up to the very occasional variation.

If I refer to myself as autistic the vast majority of time. If I spend hours and hours of my life articulating the reason why person first language makes no sense for a pervasive development disorder I am not willing to go so far as to say I never have any choice at all. That’s an extremism that I reject.

When it isn’t an ideological choice at all but simply a stylistic one chosen for the flow of the words then I will not have the same right to make a wording choice that every other writer has stripped from me. I am not prepared to think having chosen expressions other than autistic for how I describe myself makes me a bad self-advocate.

In a month that we hope to make about awareness while a restatement of the ideology behind the objection is awareness I find the notion that as a result of that there can be only one right way to say something worth rejecting.

Not because I don’t 100 percent believe in the framework that goes into the choice of autistic over person with autism. There are those who believe that any slide into person first language is just that – a slide. That it undermines the foundation that was so painstakingly laid. I’m not one of those. While I know how much language shapes thought, t o have so little faith in those who read as to think that an occasional deviation from the prescribed norm in referring to myself will cause it all to collapse is to have about as much faith as when I made a copy of my comment on the blog in the first place.

Maybe despite never being the compliant type Passover has me even less so. We didn’t fight this fight for so many years to then have it turned into something that is in an oppressive force. I don’t feel I can communicate any sort of message without the same self-referential freedom others have. I joked on Monday when a friend was feeling a strong sense of all the things that were going “wrong” with what was quite a wonderful Seder that we were not going to celebrate our exodus from slavery by being enslaved by the ritual. Nor can we celebrate neuro-diversity from a position where there is only one right way to express that message.

I know the people who feel so much rests on semantics feel that very strongly but I feel as strongly that the entire message is what matters. In a message that has been consistent about there not being a non autistic person separate from myself I will use variations when they are useful or are the least clunky way to express something.

It takes courage to put your words and ideas into the world. While not being brave on many fronts at this particular point in my life and while not being especially trusting about a lot of things I feel like I can trust that the wording of my about will not dilute my overall message. I’m choosing to think as I say that the strength and confidence with which how wrong I was was expressed is actually what we hoped for but with a hint of caution about what an over-zealous notion of the right way to say something could do.

We are all, each of us, different. We bring to any endeavour be it autism awareness or writing or raising a family unique perspectives. Meaningful awareness requires dialogue. Dialogue isn’t possible when norms are rigidly enforced.

In the blogsphere the value of the dialogue is often that opposite viewpoint meet. Sometimes your viewpoint may wind up being seen as winning a swift battle but that’s hardly ever the case. More often for it to be valuable at all you have to take in the other side and then it can have many possible impacts.

Ariane Zurcher who was the one who got me to ever open up my own blog again by her own courageous demonstration over and over of mistakes made, opinions changed often managed to welcome people on her blog who are still very much at that earlier, non-accepting stage of autism. Who still want the cure. Who are blind to all but the autism and the desire for it to be gone. The process of movement from that view point to acceptance is nearly always slow.

I mentioned in a comment how part of what makes me write is based on a comment from an English teacher I had about the meaning and beauty of turning pain into words and sharing them. For me, the fullest meaning will come if I can have the kind of impact that moves some people from a position of pure blind terror, and sadness about autism to acceptance. I don’t think that can be done by toeing a firm semantic line at all times.

There are extremes expressed about autism. I find the extremes don’t ring very true for me. While my autism is not a tragedy it’s not exactly all a fantastic day at the amusement park either. I accept my autism but actual acceptance doesn’t come in not recognizing the challenges and sticking to an equally as scripted message about how much better it is to be autistic and insistence on the using the same words for that message.

My own autistic life is very hard more often than not. My autism is the best and worst thing about me. That’s my truth. Other people no doubt have a different truth. When I said at the outset one of the things that came up was noticing in the desire to be accepting some parents expressed guilt for when they cried. Don’t.

Actual acceptance to me looks like being able to say, “You know what this is very hard at times, it’s exhausting and I get worn out.” That could be said of life too but within this context being afraid to express perfectly natural things lest they be thought of anti-acceptance worries me.

If I say I cry for myself often will I be driven from the adult autistic community? Probably from the more militant parts. I write this at close to an adult all time low in my ability to function at all though. So while I know deep inside myself there will be a day when I can appreciate the gifts my autism gives me, more than worry about the needed for life capacities failing and adequate support not being there today isn’t that day.

If I say sometimes my autism scares me does that actually work against acceptance or does that free someone else up to say or to admit that it has that effect on them sometimes too? What I want at the end of the day is to be able to say sensory issues so severe combined with executive dysfunction being at an all time high mean I have lost close to half my body weight without someone thinking that makes my existence so miserable and null of meaning that not existing would be preferable. As long as I exist the potential for something meaningful to be derived from my experience exists.

On the whole I like the person I am. I have many strengths and I have needed them. While I accept my autism and am not ashamed of it, the kind of acceptance and understanding I would hope society can get to would have them look at my struggles, and not think of me as in need of a cure, or future expressions of what it is to be  me as in need of prevention but to think wow as a society we could really do better here. We could provide the supports so a person like myself can pursue a healthy and meaningful life. We could choose to spend just a fraction of the funds derived from the dreaded awareness accessories not on making more videos with sad music playing to raise more funds in a never ending cycle but to say that as a society we value people with autism enough to give them the means to live the best life they can.

Right now we are doing badly enough that the conversation keeps coming back to institutional models of care. We are doing this badly because every single time we had appropriate supports in place they were removed without anything equally as appropriate replacing them. Real awareness would be as concerned for the 44 year old autistic experiencing sensory issues so severe they are often starving as for the 4 year old. Autistic people spend the majority of their lives as adults. However you spend your April try to put the notion of autism as a lifespan issue on the agenda.

I have a dog, a computer, dreams of more schooling and my access to all of those things could be in jeopardy not because the supports that would see me making forward progress again don’t exist but because the system which is a reflection of the society that creates it will default to what is easy for it. I’ve spent the majority of my adult life on the sidelines despite having abilities that could have had me as a more active partner in my society. For much of that time I would have required a very minimum of consistent support. Had that support been available when you go from being a child to an adult it’s fairly probable I would be in a position to pay for that support myself now. So, yes, it sucks to have come around in the circle for the umpteenth time to a position where the kind of care that would strip all meaning from my life is all that is on offer. I don’t think that’s good enough. I also don’t think I caused it by referring to myself as an adult with autism in my about. Societal indifference to people like me that has us forever poor and dependent is obviously not going to change over night. It wasn’t created by the occasional deviation from preferred terms and it won’t be overcome by a strident insistence on a sameness in the message we have about autism. Every person is unique. If I choose to have a larger linguistic toolbox at hand to try to make my own case about my autism that’s my choice to make.

It’s not a battle I am exactly fighting from a position of strength at the moment. At any moment the sum total of things I cannot manage for myself could take all choice away. So yes I am tired, not of my autism but of values that essentially discard me. Of an unwillingness of people to even imagine meaningful inclusion instead of token inclusion. Living with autism can be hard but is hoping that raising awareness means one day it isn’t made harder than it needs to be asking too much?

Cry when you need to, laugh when you can. Don’t let anyone limit how you frame your own reality. Change is slow. So slow the things that will help me will likely not be achieved in my lifetime. I’m in this fight largely for those who come after even if some of those who come after rise up and bite me for my choice of words.

I have to celebrate when I learn that something I said made an actual difference to someone with autism because there is little to celebrate in my own reality right now. As long as the ways I phrase things are not a barrier to making that difference I will not change it.

While I worry when I get real about my own life it probably scares the beep out of the parent readers that isn’t the intent. The intent is to show unless we can make progress that has society view autism as the lifespan issue it is this reality I am living could be some child’s future reality.

Don’t think I am devaluing myself when I say I am in this fight largely for those who come after. I say it that because what sustains me is the knowledge that my experience even at rock bottom is indeed helpful to someone. It gives me courage and vast quantities of it are needed. While some well meaning individuals will bestow courage as an attribute on those they see as “afflicted” the reality is I am always running out.

At the end of the day everyone lives the life they were dealt. If it seems like the cards are stacked high against winning since there are no re-deals in life well you find a way to go on. My way to go on is not to blame my autism even when the areas that are falling apart are all pretty autism related. It’s to point out if one were to look only at how I was functioning independent of my ever having spoken, or having made the mistake of letting them get some estimate of my intelligence – based only on where my functioning sits right now a just approach to autism, a truly awareness based approach support would be basic.

Instead I get institutional care suggested or going off to have my family look after me and blank stares if I say my family has their own life and I have had one here in this city for 27 years so I would prefer to carry on with my life, with my goals and with my dreams. However grim the basics look I know the only sustenance that helps is dreams.

When I was young and energetic and a life closer to what I hoped still seemed within grasp I had energy to spare. I still have hopes though. The life I will have is something I keep having to re-envision as some things I dreamt of move permanently out of range but as I play out the life I have I do so hoping that over times more dreams of autistics are realized. That a strength based model will replace a tragedy one and that one day there won’t be more mes not because autism has been eradicated but because autistics are supported and encouraged to have full and rich lives. Not just managed, or warehoused , or set beside the path of life. That one day continuous access to appropriate supports will be a battle won and no one ever has to sit with the choice of dying slowly or giving up their dreams. It seems a modest enough dream. Society seems to have a different opinion. Until I am no longer or that dream is realized I will try to express whatever I think needs expressing to move that forward and to serve the greater good. I don’t think that as a life choice that’s much different from any other ethical being. Because my life is very much at stake whether literally or as the kind of life worth having, I will be obstinate about any attempt to dictate the words I must use. Everyone can feel free to be just as obstinate in their own word choice. Words are power and part of the power rests in a choice. If 44 years of autistic life hasn’t earned me the right to switch things up a bit when describing my own reality well that’s a tyranny of ideology I won’t submit to. It’s possible to believe in an idea but reject the imposition of it.

In theory I believe democracy is the right choice for some countries for example. I find the notion of imposing democracy to be somewhat counter to that very ideal just as I find the imposing of a single way to describe autism to be contrary to the whole point of describing it. To my younger, autistic brethren who can feel such offence reflexively by my description of myself well that’s a debate I was part of. That’s an ideology I live not by seeking out reasons to take offense based on small deviations from the semantic cultural norm but by trying to reach out. Because meaningful change to autistic reality can only happen in partnership with the neurotypical majority that is going to mean sometimes singing to the most reluctant melodies of change in terms they can accept. That is not like I said at the outset why my about is phrased as it is but sometimes it will be a deliberate choice for that very reason.

Let’s not be so focussed on the need to manage the message that we too become a force of oppresion. The reason you hold a position can only be strengthened by challenges to it so if my errant ways in my “about” made someone more sure of why autistic is the preferred term then that’s good I think. Certainty that it is the preferred term though just expressed in the same uniform way and the same accusatory phrases as always in the absence of the kind of arguments that were needed to advance the cause do make me worry that there are those who will seek to have people toe a linguistic line without fully understanding why. I am not saying that was even the case with the person who objected here as it’s the second time this year I’ve been challenged from within the community over deviation from semnatic norms. Being autistic doesn’t make us Borg – although that would be cool in a twisted kind of way. There is room to challenge each other without undermining each other. To celebrate diversity by being diverse.

So one of these days I will get to the other things this whole experience brought up. The questions that spoke to me more. I didn’t want to tackle those things though only to be handed an infraction card for the way I write about those things.