Autism is Not a Game

Some things are not funny or games. One would think that would be obvious but if you are of Facebook that breast cancer is made into a funny game you may have seen for as long as you have been there. It’s not a game I will play and when I politely suggest all sorts of more useful things people could do after explaining why some unfriend. I do not miss them.

Now there is one for autism.

Autism awareness should start with the awareness of what being autistic means for those of us who are. Like the breast cancer “game” it should not exist. Call that black and white thinking if you must but some things are black and white.

Autism is demonized by others to support their agenda about it. If you are autistic odds are you will be bullied, underemployed, exploited, made fun of and so much more. I wish the odds of actual acceptance ran as high.

Autism is said to be an epidemic and those heck bent on that view then go on if they see vaccination as the culprit to unleash real ones. The message to autistics is clear. Death is better than autism and science is not worth regarding as superior too fear.

The murder of autistics is so out of control in the US that while the international autistic community mourns our dead for they are our dead the question of when will we not know the names of all of the dead is there. Likely some die having lived lives so invisible we do do not mourn them with the other dead.

Sentences as murder is so rare. I am not quite sure how two women stab an autistic multiple times and somehow justice is compassionate when that is some ridiculous degree of manslaughter and time served is the sentence. Compassionate to those who are not autistic I guess is what matters. Calling that justice is in itself an injustice.

In Canada, where I live I often feel like I am simply being killed more slowly by intensive neglect. In theory I finally have support that is based on my autism. I thought this a miracle of sorts initially and sure it would end a lot of things as being too intelligent to qualify for adult services is silly as for a lot of my life a few hours support around the things I could not do would have ensured I had the right amount of degrees for my dreams and was a taxpayer and all sorts of good things.

It’s been over 5 years since having to move from my home of 14 years turned my life upside down. I had gone a long stretch of time without needing service from the mental health system or at least fearing that it was so often more of an invitation to abuse than service with solutions so unlikely why bother?

Now that it is sadistic I wince when an entire day is devoted to mental health or I see a commercial which has the facts right on things like depression in Canada but it tells you to get help. If you live in my health authority not thinking that help is what will happen could save your life. At least it would prevent ptsd or complex trauma depending on how often you have been harmed seeking help or abused as a form of help.

It shouldn’t be that way much like autism should not be a game to anyone. This is the kind of world we live in though. If it isn’t a meme or a game it is just too long or boring or sad.

By April I will have a better 30 item list for actual awareness and no one will play that as a game as there is nothing funny about a lifetime of being autistic being a reason to harm you in some way or the consequences of living the autistic life.

Given number one in the game that should not exist is “I just found a squirrel in my car.” How is this awareness or education. I mean sure I don’t like surprises but it doesn’t really indicate how chaotic something unexpected is for the autistic. Although unexpected animals are a stronger suit for me and if I had ever found one in my car ( I don’t own one and never have so that too would be a surprise.) I would have worked out how it got in there.

The fundamental problem about autism education is very little of it is done by autistics. I don’t understand what it is like to be not autistic so why is that exactly? I have some ideas having watched people recoil from truth, literally run from science at an autism conference although it was more of a stampede, and oh people are always explaining my reality to me.

The thing about me is I don’t lie and I don’t use hyperbole for effect. I will do both in fiction of course as the whole thing is made up and hyperbole is okay. Having people doubt what I say about something distressing compounds the distress and makes every other time others have overwritten my reality come back.

Autism is a disability. How people respond to autistics or speak or write about autism is so often so inappropriate that the stress from that alone makes me less able.

That’s the other frustrating bit. People are often blinded by my autism to the abilities I do have or flat out refuse to believe I have any or the opposite doubt I have autism because I can and have done certain things.

That doesn’t happen with many disabilities. People notice my physical disability first now and for the fast interactions of some of life the way that alters their behaviour is while not surprising very unfair. I wasn’t born needing a walker and using one didn’t thus impact everything else.

The closest thing to like a game is how often the origin story of the older autistic is like a super-hero. Many of them are after all not from Earth. Still if you actually were born on this planet to human parents the degree of effort getting to the point where you understand what is going on enough at any given time is considerable and new situations may come with assumptions you can adapt as to someone else it seems not that different.

There are times I hate the bonus difficulty levels of being autistic. Times I confuse that with preferring not to be but that non-autistic me has never existed and never will. I know there are skills I have directly as a result of autism. I use them in ways which by now I should know are not that surprising but seeing the beneficial outcome always surprises me and maybe that is good.

The surprise after all is because I don’t expect all people to be the same and so when something I know about due to autism helps someone and I am surprised it means I have that part down. I think maybe more people need to do some work there.

Having autism has times of joy. When distressed over a year ago a boy who’s sense of being alone in a puzzling world I had made him feel less alone so that one day it would of course he would have the solution to my distress. I felt some pride as he made himself look taller and addressed issues of if I should even follow him to a “sparkly, glowing, spider web”. I didn’t raise them but I use a walker had lost weight and the path was slippery well two came up and the weight was the collective desire I prioritize eating. He knew eating and music as the band was about to leave were not the cure I needed.
We sat and he asked if other people could see how amazing it was as no one had even slowed down before. I am forever in educational mode so the prisms of water the web and rain had caused I explained would mean that the lights strung all along would produce an effect nearly everyone could see if they had slowed down and looked at it from the right angle. Other things as individual and thus we were very lucky as the sparkly, glowing beauty as something we could both enjoy was something I had needed.

We rested for some time from the communal chaos. He also enjoys enjoys games but life is often lonely when your needs are not standard and how you see things be it literal or less so is also not typical they have not made a game that quite captures this wonder.

That would be a game worth playing. If one could capture the lonely confusion of early autistic life that will repeat even if more knowledge means some things are not confusing but lonely and different even when with people who accept your differences that you will inevitably do or say something that for a time makes that highlighted well the quest in a proper game about life as different might be for rewards like that.

It’s still January and the dread autism awareness month is April so consider this advanced education about why autism games may indeed be possible but they would be hard and not that fun,, at times sad, often lonely with minutes of intense wonder to revel in with someone also walking a lonely path. In game terms we call all the boring things in between a reward “grind”. In autistic terms I wish boring was all that came between the sweetest and most wonderful times.

Don’t play this stupid game please. Or play it and if you have autistic friends don’t be shocked when they decide the prize of friendship with you is just too high.

Our life is hard yet autism is not a tragedy. The willingness for people to aim for easy that this game so represents or popular which reading best-sellers by the non-autistic represents as few of us are easy or popular so aiming just a bit higher is a start.

Some things are not funny or games. One would think that would be obvious but if you are of Facebook that breast cancer is made into a funny game you may have seen for as long as you have been there. It’s not a game I will play and when I politely suggest all sorts of more useful things people could do after explaining why some unfriend. I do not miss them.

Now there is one for autism.

Autism awareness should start with the awareness of what being autistic means for those of us who are. Like the breast cancer “game” it should not exist. Call that black and white thinking if you must but some things are black and white.

Autism is demonized by others to support their agenda about it. If you are autistic odds are you will be bullied, underemployed, exploited, made fun of and so much more. I wish the odds of actual acceptance ran as high.

Autism is said to be an epidemic and those heck bent on that view then go on if they see vaccination as the culprit to unleash real ones. The message to autistics is clear. Death is better than autism and science is not worth regarding as superior too fear.

The murder of autistics is so out of control in the US that while the international autistic community mourns our dead for they are our dead the question of when will we not know the names of all of the dead is there. Likely some die having lived lives so invisible we do do not mourn them with the other dead.

Sentences as murder is so rare. I am not quite sure how two women stab an autistic multiple times and somehow justice is compassionate when that is some ridiculous degree of manslaughter and time served is the sentence. Compassionate to those who are not autistic I guess is what matters. Calling that justice is in itself an injustice.

In Canada, where I live I often feel like I am simply being killed more slowly by intensive neglect. In theory I finally have support that is based on my autism. I thought this a miracle of sorts initially and sure it would end a lot of things as being too intelligent to qualify for adult services is silly as for a lot of my life a few hours support around the things I could not do would have ensured I had the right amount of degrees for my dreams and was a taxpayer and all sorts of good things.

It’s been over 5 years since having to move from my home of 14 years turned my life upside down. I had gone a long stretch of time without needing service from the mental health system or at least fearing that it was so often more of an invitation to abuse than service with solutions so unlikely why bother?

Now that it is sadistic I wince when an entire day is devoted to mental health or I see a commercial which has the facts right on things like depression in Canada but it tells you to get help. If you live in my health authority not thinking that help is what will happen could save your life. At least it would prevent ptsd or complex trauma depending on how often you have been harmed seeking help or abused as a form of help.

It shouldn’t be that way much like autism should not be a game to anyone. This is the kind of world we live in though. If it isn’t a meme or a game it is just too long or boring or sad.

By April I will have a better 30 item list for actual awareness and no one will play that as a game as there is nothing funny about a lifetime of being autistic being a reason to harm you in some way or the consequences of living the autistic life.

Given number one in the game that should not exist is “I just found a squirrel in my car.” How is this awareness or education. I mean sure I don’t like surprises but it doesn’t really indicate how chaotic something unexpected is for the autistic. Although unexpected animals are a stronger suit for me and if I had ever found one in my car ( I don’t own one and never have so that too would be a surprise.) I would have worked out how it got in there.

The fundamental problem about autism education is very little of it is done by autistics. I don’t understand what it is like to be not autistic so why is that exactly? I have some ideas having watched people recoil from truth, literally run from science at an autism conference although it was more of a stampede, and oh people are always explaining my reality to me.

The thing about me is I don’t lie and I don’t use hyperbole for effect. I will do both in fiction of course as the whole thing is made up and hyperbole is okay. Having people doubt what I say about something distressing compounds the distress and makes every other time others have overwritten my reality come back.

Autism is a disability. How people respond to autistics or speak or write about autism is so often so inappropriate that the stress from that alone makes me less able.

That’s the other frustrating bit. People are often blinded by my autism to the abilities I do have or flat out refuse to believe I have any or the opposite doubt I have autism because I can and have done certain things.

That doesn’t happen with many disabilities. People notice my physical disability first now and for the fast interactions of some of life the way that alters their behaviour is while not surprising very unfair. I wasn’t born needing a walker and using one didn’t thus impact everything else.

The closest thing to like a game is how often the origin story of the older autistic is like a super-hero. Many of them are after all not from Earth. Still if you actually were born on this planet to human parents the degree of effort getting to the point where you understand what is going on enough at any given time is considerable and new situations may come with assumptions you can adapt as to someone else it seems not that different.

There are times I hate the bonus difficulty levels of being autistic. Times I confuse that with preferring not to be but that non-autistic me has never existed and never will. I know there are skills I have directly as a result of autism. I use them in ways which by now I should know are not that surprising but seeing the beneficial outcome always surprises me and maybe that is good.

The surprise after all is because I don’t expect all people to be the same and so when something I know about due to autism helps someone and I am surprised it means I have that part down. I think maybe more people need to do some work there.

Having autism has times of joy. When distressed over a year ago a boy who’s sense of being alone in a puzzling world I had made him feel less alone so that one day it would of course he would have the solution to my distress. I felt some pride as he made himself look taller and addressed issues of if I should even follow him to a “sparkly, glowing, spider web”. I didn’t raise them but I use a walker had lost weight and the path was slippery well two came up and the weight was the collective desire I prioritize eating. He knew eating and music as the band was about to leave were not the cure I needed.
We sat and he asked if other people could see how amazing it was as no one had even slowed down before. I am forever in educational mode so the prisms of water the web and rain had caused I explained would mean that the lights strung all along would produce an effect nearly everyone could see if they had slowed down and looked at it from the right angle. Other things as individual and thus we were very lucky as the sparkly, glowing beauty as something we could both enjoy was something I had needed.

We rested for some time from the communal chaos. He also enjoys enjoys games but life is often lonely when your needs are not standard and how you see things be it literal or less so is also not typical they have not made a game that quite captures this wonder.

That would be a game worth playing. If one could capture the lonely confusion of early autistic life that will repeat even if more knowledge means some things are not confusing but lonely and different even when with people who accept your differences that you will inevitably do or say something that for a time makes that highlighted well the quest in a proper game about life as different might be for rewards like that.

It’s still January and the dread autism awareness month is April so consider this advanced education about why autism games may indeed be possible but they would be hard and not that fun,, at times sad, often lonely with minutes of intense wonder to revel in with someone also walking a lonely path. In game terms we call all the boring things in between a reward “grind”. In autistic terms I wish boring was all that came between the sweetest and most wonderful times.

Don’t play this stupid game please. Or play it and if you have autistic friends don’t be shocked when they decide the prize of friendship with you is just too high.

Our life is hard yet autism is not a tragedy. The willingness for people to aim for easy that this game so represents or popular which reading best-sellers by the non-autistic represents as few of us are easy or popular so aiming just a bit higher is a start.

Skating all over the Spectrum.

I have complained before about the treatment of speech as binary and I have complained about the way functioning is defined and explained and why I don’t believe in the labels high and low. The past couple of weeks illustrated a bit better than I actually might want why my feelings run so strong on things that are non-issue for most.

Anyone who knows me or reads my blog closely knows things have been rough for about 20 months now. I fell into a massive tailspin when I had to move from my long term residence and nothing so far has been able to bring me out of it. I think the local health authority screwed up a lot in the process which hasn’t helped at all but there you have it.

If people know a thing or two about autism they usually know about change being hard but so hard gets a bit difficult to take. I have trouble with good change even unfortunately so life can be like walking a tight rope. When I first moved into my completely unsuitable and probably not up to code place my case manager wanted to start looking immediately for something else. I knew the risk of coming completely undone was too high so here I still sit. It’s a hovel but it is a familiar one. (I hope my landlord never finds my blog)

I have numerous fairly serious health issues on top of my autism. Some of them are of course complicated by it. Actually it is likely they all are. I am often reluctant to start doing something because it is hard to stop. This is far from ideal if you have arthritis and may be why we have had 3 surgeries (two replacements and one repair of a replacement) already in 4 years sigh.

When I wound up in sophistical for what was meant to be a short stay really as my doctor knows nothing can be done for me bio-medically so keeping me away from my dog, internet and work seems unethical to him the stay went on and on. It went on and on because apparently his ethics were okay as long as things about me were being fixed even if those things had nothing to do with my reason for being there. There was a lot to fix as my ability to tolerate texture had made me completely unable to eat for long enough that almost everything you can measure in blood was out of normal range as they put it. They tried to treat some of that with oral pills even though I said I don’t absorb iron that way no one listened for almost 3 months so several values kept going the wrong way.

They ran the tests my doctor wanted done as far as my autism goes, which bore out what I always have said. That if functioning were defined differently (and since I am always right it of course should be) I would be considered low functioning, perhaps on a good day at the high end of that scale I don’t even believe in but that is important for getting services.

The tests had me the required three standard deviations below the norm for all sorts of activities of daily life. I have to say despite my saying the thing about how well I actually function if functioning is what we are looking at I was a little taken aback. More than a little. They were saying both what I did know on one level and more importantly what they needed the report to say but I felt worried and confused a bit. I asked my doctor for a copy so I could read it more closely and try to process it but he is not very organized and so I am still waiting.

The reason I don’t like treating functioning as a binary thing you can measure is for many if not all autistics that is not how life is lived. At moments of stress even those with impressive jobs struggle in ways that NTs do not. Some of us… people like myself slide all over the place on pretty every symptom that counts. It is stressful to say the least. It was that sliding actually that put me where I placed on the tests as they worded things very absolutely. Losing the ability to speak sometimes was worth almost as much as not speaking at all it seemed and not being able to call strangers the way they worded it was like not being able to use the phone. I can answer it. I can call a friend or family member. Oh well. My doctor’s goal was services and he must have rubbed his hands with glee when he saw what tests were being asked for, although no services have been obtained yet sigh.

It is a tiring thing to be depressed for a long time, to have multiple surgeries during that time, to have your blood all out of whack because you cannot eat properly and so on. It goes on and on and of course you get to the point where like the spent salmon you just do not feel you can go on. Of course a salmon doesn’t but human life is more complicated.

So what happens when you are metaphorically kicked in the guts by having the services you did have taken when you are at your worst? If you are me you regress pretty badly. You have more days where you simply do not want to have any exposure to people. If you have to venture out you have more incidents where the words will not come and so it goes.

While full on muteness for an extended time is usually rare the slowing of my words to a speed that people don’t stand still for or confuse as a symptom of my stupidity isn’t . It is also the one I am most prepared for. I feel a bit bad about it at times because when it occurs around family and friends it almost seems manipulative. Not a fair way to put it when it is not something you wanted to have happen or could control but everyone pretty much prepares you for everything for a long time afterward and so on.

I consider myself Jewish and well I am Jewish beyond a shadow of a doubt now so I guess that is good but for a long time I lacked the courage to even try to be a Jew among Jews. My sister-in-law is Anglican and that was a familiar stetting so I did that and tried to make peace with the trinity every week when that was the peace of advice a scholar in residence gave me when I asked him about it. Despite his lofty rank in the church he had his own doubts but felt it was okay if he could get them in order for the declaration of faith and then he had another week before he had to worry.

His solution worked for me for a long time. At Christmas I was almost always at my brother’s house and going to the midnight service had become a tradition. Tradition is a bit problematic with me because pretty well anything I have done twice I expect to carry on. So there was the year my sister-in-law’s mother of blessed memory was feeling a little tired, and everyone else was enjoying the conversation and wine. Somehow the unthinkable happened and people agreed to not go to the service. I completely and totally shut down. I have no idea of the span of time. For awhile the whole gathering spun to that rare place where I could no longer comprehend their words then I could hear them but not answer.

I got to the point where I was aware that pretty well everyone in the room was very uncomfortable Tears had streamed down my cheeks for a long time and I am not much of a one for crying. People tried to talk to me at first and then gave up. I could see them looking for guidance but eventually things resumed with me sitting there mute and miserable, acutely aware I had to some degree spoiled what had made them want to stay in the first place. They had been cozy and happy together and I and my need for routine and subsequent quiet melt down had ruined it,

There is nothing to do about it When I could talk we did not talk about that. Was clear enough that people were relieved when I could but I suspect most thought bringing it up might bring it on again I do not know not being them.

My sister-in-law had always been as good as her organization level allowed her to be at trying to give me a sense of what would happen during my visit and on any given day. For several years after this incident she was almost comically obsessive about it. She sent pictures of a new car they had bought well in advance and so forth. Really it was helpful and I am not complaining but hand in hand with the feeling that I was getting much more information about what was going on and what to expect far in advance I felt guilty because of why.

I have been told guilt is a useless emotion but that hardly stops it. Feeling guilty about something you cannot control and didn’t ask for is no doubt even worse but I was younger then and still a bit hoping to be more like everyone else there. I had not given up the thought entirely I could catch up. So the useful things that came were also reminders that I was not like others. Everyone was loving and kind but that I needed this stuff was something I so wished I didn’t. I alternated between feeling well this is living the dream as far as no surprises goes and feeling horrible for how much thought people were putting into things that I so wished could just go naturally.

I don’t know that anyone in the room had even seen me in that state before. What I was was known but since I usually can talk and function was expected, especially at the events that happen over and over again. You might peak in and not guess at the best of times and holidays often are so while I think my sister-in-law had talked to me rough to know it could happen in theory , it is not theory when you make a decision that leads to someone being in that state I guess.

Lately every day has had the potential to have me like that. Most have but since I am avoiding humans it has hardly any consequence. When I had some to see for medical reasons I did become both mute and so totally unable to come anywhere close to looking at people that it was a worry for me. I like to look at their id which at the hospital is usually worn around their neck. I couldn’t get that high. The books that say fake eye contact never do describe what to do when getting much above the midpoint of the stomach is beyond you. Of course since I hate those books it is not like I will be looking to them for a solution.

More things went wrong after I had my surgery. Something that would have been catastrophic actually had it not been labeled an administrative error the next day. The damage though from the 24 hours in between is still with me. My case manager can’t work out why even though I tried to explain it. I suppose on a level if they thought more in terms of my autism and less about my depression it would make sense that functioning lost through a traumatic event isn’t regained instantly just finding out it was a mistake but they don’t seem to think like that.

Despite being done with humans I went out among them today because I have friend who claims to be stupid but is an evil genius when it comes to thwarting my plans to isolate myself or worse. She has a son who I suspect is on the spectrum. Both her boys love me it would seem.

She claims total innocence in the fact that the one likely to be the spectrum showed me his gratitude drawing on his wall. She sometimes asks me to talk to him about stuff she does;t understand and she feels I am more qualified to deal with but the topic currently looming is going to require some warming up and coming up naturally so I was making conversation in his room wondering if it would and he pointed to it.

I was up there just under Mommy and slightly over Chocolate cake. Daddy and G-d and a few other things made appearances but I felt yet another tentacle sink in. I love this child and I do not use love lightly. Problem is I am not that fond of the planet he lives on and it’s a balancing act where his mother consciously points out she needs me for him and incidents like this which still leave me blown away. What do you do when a child is grateful for you and a small handful of expected things? (although his mother was surprised he put G-d I said she shouldn’t be given he pays complete attention at services and if the rabbi is there is so rapt and still you would not guess his age)

His mother more sneakily had placed a picture of the boys in my backpack which she hoped to get into my house and set up as I made my painstaking way from the car. However since once of the things we do with the boys is play with my tablet multiple trips to my backpack were made so I found it and had to check if a child had put it there or if it was meant to be there.

To be completely honest my weeks had gone so bad and I was tired enough my ability to hang on much longer was in doubt and now I was in a horrible quandary which I managed to make worse as I was helping with the boy’s bedtime..

My evil friend had been telling me they had hardly any percussion in their huge concert band and it was a problem but her band meets the day before the one I have played in for more than 24 years does (I did do a brief stint in her band years ago) It is hard for me to be among those dreaded humans multiple days in a row as who knows what will happen? I had refused and refused and then earlier I had seen that the concert was Jewish music and I thought well if I can make that better by being there (I had my doubts) I probably should. I wasn’t willing to commit past the rehearsals and that gig and so I expected the conductor to say no but as I was trying to settle one child in the answer came back to if he wanted me on those terms as simply YES!!! so there I was stuck on the planet for sure for 20 more days and no doubt no matter how many cruel and stupid things happen to me in the mean time in those 20 times that a little boy is grateful for me will sink deeper and deeper into me.

It’s far from the first time I have helped people with their kids. I was a respite caregiver for 24 years and although I never looked after someone on the spectrum professionally in that time I met and mentored a few who’s parents I came to know.

One thing that is unique about my evil, genius, friend is that she just sees it as totally logical that she seek help from me. I had previously sometimes found it delicate trying to explain what I thought was going on or was even 99 percent sure was as no matter how out of their depth a parent feels and how much they express the desire for some perspective on one level they can’t let go of the fact they must logically know more about everything about their kid.

My friend does not have an iota of that hang-up. I go over she will say this will go faster if you do it matter-of-factlyyand so on. She says it was immediately apparent from when her eldest first met me and that he subsequently asked for me that he related to something about me and I suppose when I could explain a few things or get him to get things done that would have taken “forever” otherwise my utility was clear.

So tonight I had to go into a room with 65 strangers having sworn not to see humans for a few more days still (except accidentally). I had to shake hands a few times something I am thankfully good at. Say my name a dozen (less good as it is a name they won’t have heard) and then play music I had never seen. Once I survived all that in a week where several times I couldn’t speak at all I must have come to rest for a bit somewhere else but who knows what tomorrow brings? How curative is a little boy’s innocent gratitude for a person who he actually could tell was like him and he tried to articulate it at service once.

I am an ethical person and multiple times this year I wondered if it would be best to just not see them. That if the worse were to come to pass they would be more spared somehow but it is likely too late for that at least for boy one.

While the love of a child is clearly curative it doesn’t fix any practical problem we have with our health authority’s stupid and downright negligent ways or any health problem really. I know having had times lately where I tried to hide in places I would not have attempted it as being discrete with my autism in public was always something I worked on (not always successfully but…) After a blood draw I walked right up to a wall and smashed me head into it to feel better (my doctor has been considering putting me on those blockers that in theory prevent this from making you feel better but my arthritis makes it impractical)

I am of course grateful for my friend and her children as well, chocolate cake and G-d would make my list, and work I can I do without any contact in person with people at all, and of course the best dog on the planet. I suppose that is enough for right now. The sliding around will carry on. Right now I feel afraid of going to the band I have played in for 24 years a full 14 hours in advance so there is little to be done but deal with that.