Tag Archives: Autism

The Supports We Don’t Expect

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416111_3028021694076_399525806_oI live an odd life. Odder now in many ways than decades ago. When I was younger and having problems everyone agreed I lacked informal supports. True enough as a young adult with difficulty making friends who had the ones she did have move away or die or in a few instances say we didn’t have anything in common anymore that was true. During the years when I spent a lot of time dysfunctional in one way or the other the only kind of people you could meet were people who to put it bluntly might not make it. Many of my friends killed themselves. I became afraid to make new ones with good reason.

Then I spent a long time where I was still not exactly a model of functionality but I was free of serious depression. I worked at my job, played in a band and had some hobbies on the computer. I gamed a lot and over time not just gaming but the support of games became part of how I spent my time.  Things were very stable for over a dozen years. Perhaps a bit on the hermity side if you are one of those people who only counts people who you meet in the flesh as friends but the nice constant state was what I needed to do well.

Of course in life change is inevitable. I don’t deal well with positive change truthfully. I found that out a very hard way but negative change is certainly a rough one and so I find myself 18 months into it still teetering along. It feels much like walking a tight rope I guess in that it doesn’t seem like very much could dislodge the narrow grasp I have on leading the life I have.

Still one thing I know about myself is that it isn’t helpful to have huge amounts of time with nothing to fill them so when I got out of hospital I was eager to go to work. This work is one of the supports you don’t expect. Years ago I started to volunteer for a game because it was very like a game I had worked on as a professional when I found out the hard way positive change is hard. I wanted to keep up my skills as I anticipated continued physical decline would mean that I might need to seriously look at working in a field that had begun at a hobby, briefly promised to be very lucrative and then fell apart and was then going to be a hobby again.

I accepted what I think a lot of people might have had a harder time with (the loss of what would have been a substantial monthly income) much better than I accepted losing my place. People wonder why. I think the answer is obvious enough. The chance, however positive to earn big bucks was a big change. It falling apart ultimately meant nothing changed. It seems sad to me when I try to look at it as if I were not myself but that is why I think it took far less time for me to just settle back into my routine and part of that routine when it wasn’t too painful included being pragmatic about how to keep up my skills.

However pragmatic I was being when I applied to work on the first Gameforge game I would work on as a volunteer it was the start of a big support you don’t expect. Since I had a lot of experience I climbed the ranks pretty fast to the highest non-paid position and had the things I was used to in terms of people to supervise and so  on. What I also had was the start of friendships which have grown over the years.

The person I worked for first I still do work for although with might be more accurate even though she is my boss she is very skilled in always making sure he administration team feels it is a collobaration and for the kind of game we currently work on and the community we are it has to be. The person who has the charge of the English speaking community normally  is the head of the game so the admins work stretches a bit more and that has been fine.

I told the person who I have worked with all these years that it is odd that I consider her one of my closest friends despite never having met. That can happen when you work side by side for years on various things I guess. She is just one of many people either on my  current teams or who I have worked with at one point or even some of our players who are a not expected source of support.

At this point I do some paid work on another game and almost immediately after that started my days changed. One might be tempted to question if this was from overwork but that wouldn’t be it. Although in a nightmare of scheduling my first day of work coincided with my first day of Hebrew class. In theory we could have to use French, German or English in or work and then to march off to Hebrew class seemed a bit much. In practice we so seldom get to the bottom of the English work I rarely get to help out anywhere else. It’s also only a theory that we only work in three languages as our players speak every language that can be spoken and can break the rules in any of them. I can recognize an insult against someone’s mother at 30 paces at this point no matter what language you put it in which I suspect isn’t a very transferable skill.

My “real” boss in the sense he is in charge of the project I get paid actual money to work on was claiming pretty fast that he knew I would work well with one of my other big unexpected sources of support which was he hired me which was part of why he did. I gather when your boss makes any claim you should agree but I really wasn’t expecting for the shape of my day to change so completely by this part time job.

I am grateful to have a job I can do right now from my bed. Knee operations take forever to make a full recovery from and this being my third one I knew better than to even think I would be at my desk any time soon. I am more grateful still though to work with people who are genuinely nice and caring.  Just as I am about to go to bed most days I yak with my collegue in Germany so he knows things that came up that might need watching and so on. I always imagined if I was in an office situation I would have to make a special effort not to be too task oriented because I had worked out from tv that people talk about a lot of not work stuff at work. Turns out I can shoot the breeze just fine in text. We do both of course but even on days when we have mainly talked about work somehow I feel better for the contact somehow.

I often also check to see if any of the team I supervise are up and at ’em so I can pass on anything they might need to know or if they have been “slack and idle” as we used to say in cadets remind them about my imaginary whip etc… I suppose a serious downside of supervising people scattered all over the globe is it is a bit harder to get them properly afraid of your whip. Seriously I since many of the volunteers are young adults some of whom hope to be in gaming as a career others with time to kill I like to think I can pass on some useful skills. Lately I have seen some of the people I had as volunteers enter paid positions in our company so I suppose I can take some credit.  I had one team member who had had their interview a week before they interviewed for a job in real life that mine had been so tough the real one had been so easy although they asked a lot of the same stuff he got the job without a problem.  These sorts of things do something that can be hard when mostly you are seen in terms of what you can’t do. They remind you that you do indeed do some things very well. Well enough to teach others how to do it and to supervise them. That can be something you can easily forget when multiple disabilities have you on the sidelines of life a lot of the time.

While we are covering online supports there is of course blogs. I am new to blogs. I was always more of an IRC and an email person and when IRC especially started to lose people to blogs I felt sad but not motivated to blog. It is odd as I always wanted to write when I was young but sharing a very personal story with the world is not easy. Yet there is support here. In the comments mainly but you get to know some people more deeply. The other day my phone rang as someone had been concerned enough to call . A person I have known for well under a year but whom I admire.  Sadly I found out the phone rang after the fact.  I had had my phone off for the Jewish New Year and then for Shabbat and after three days with it off the odds of my finding it and turning it on for Sunday seemed low. I am not a huge phone person but if I had managed to miss it in the comments that people cared I can replay the message.

We spend a lot of time worrying about the lack of formal supports and their limited duration. Fretting that without some we can’t do it and I actually still believe that is probably true for how many things we have going on with us right now but it feels odd in a way because for so many years of my life there was nothing but formal supports. I mentioned all the online supports as I think to many they are less obvious but I have a very global informal support system. I think I get some support from every continent except Antarctica. It may be small and it may sometimes not even look like support but it counts.  Some is huge and when people doubt the validity of those relationships I get cranky.

I think the tendancy to dismiss online supports is they look too much like what an autistic adult might spend “too much” time doing. That is typing away at their computers. Years ago when I had time to play games rather than support them some of my friends were people in those games. I knew as much about their life as I would if they lived next door and we met for coffee often. The slaying of giant “bosses” (for those who don’t game bosses have the most loot and loot is a nice thing) as we got to know each other no doubt made it easier for me to be social and nearly inevitably because with the slaying of bosses comes the dreaded use of some kind of speech needed communication I would have to explain my autism (if it didn’t come up before then) and I don’t recall, unlike real life, a single person ever being a jerk about it.

An offline support that one might leave out of supports we don’t expect has been my congregation. Generally speaking society expects various congregations to help their members with the things that come their way but in my experience how much a group meets that expectation varies a lot. When I came though the door for the first time at my local Jewish Community Centre for services things were still going okay for me. They quickly wouldn’t be and had I never made it through those doors I would have been in a much worse mess.

When my life and my living situation and everything fell totally apart a year and a half ago they took care of every detail. I was just to concentrate on getting well and leave everything to them. Since for the first month I couldn’t get out of bed even if I wanted to I didn’t have a choice but I wasn’t used to it either.

Every previous time in hospital I had been “that patient”. Nurses know the ones. They get no visitors or so few they wind up on the nursing staff radar. You inherit second hand flower boquets and days of tv when other people go home and so on. Last spring my room was so overrun with visitors I more feared that they would get thrown out for being rowdy than the pity I had become pretty used to from the staff. This year the timing was more awkward but I was still well looked after. Food arrives on my doorstep,  people have gotten organized about cooking for me. This year cooking is a special concern because I have lost enough weight for it to be concerning. I had a lot to lose but there is something to sterotypes and you will never convince the friends in my congregation I am not one cracker away from death’s door. It’s been something I have had to adjust to having this level of support in real life. Going to a service or a dinner and knowing when people ask how I am they really do want to know and if they don’t care for the answer they will likely set out to do something about it.

I have played in a band for close to 25 years. It is part of the non-profit, The Friends of Music Society, and as causes go it is a good one. I guess that is why in the seasons when other bands did sniff around for percussionists I stick around. I am also on the board so in a way I expect it now not to be so much support as more work. Still we had our first rehearsal the other night. I am in no shape to be there to be honest. Given I cannot bend my left leg we had known for half a year that there would be no hi-hat at some point but stamina wise it was a bit much for me that first night too.

I don’t know why I don’t expect there to be support there. The support is largely in the familiar people, and the familiar routines.  The other way it is supportive is similar to how when I work I can see the skills I have. The same thing happens at band. With my leg being in a brace people were popping up to arrange things for me and expressing more concern but the rest of the time we were playing and I wasn’t getting a lot of leeway on missed triplets either. I made a pathetic plea for some sympathy as I had opted out of a measure of them thinking I might throw-up if I moved enough to do them but we went back to the beginning of that section all the same. I suspect as long as you have a pulse you won’t get much leeway out of our conductor and that is always how I have liked it. It has made me a better drummer and when we go out and play for the elderly or the public or for group homes it is a positive identification to have versus everything else I might spend some of the week being musician makes a nice break and it wouldn’t be an honest break if it didn’t go with expectations on the part of the conductor.

There are more but I should have been asleep hours ago if I am ever going to reset my sleep schedule. Oh hold on there is one I can’t not mention and that would of course be my dog. He again doesn’t fall in the category of support you don’t expect because you expect a dog to be a support but he is the most spectacular dog in the history of dogs. He had his fifth birthday on Sunday and there really are no words for how much he means to me. When things looked very grim for finding housing that accomadated both of us I did contemplate homelessness.  I am too physically badly off for anyone to let me entertain that notion for more than a half a second. It is however a measure of what he means. I think he goes well beyond what I expected when a month after my previous dog I went to pick up an entirely different dog.  He should have been a female from an entirely different litter and my fate was sealed as soon as I said I better just play with him for a moment or two or I would always wonder. Sorry to that dog that was to be but you should have gotten Shadow to show you some tips in all those weeks you had getting old enough to go to a home.

It’s almost a cliche how much a dog can help I guess and so yes people do expect it but much like congregations I guess there is individual variation. I have never met a dog I didn’t like but Shadow is supportive and important beyond any expectation.

I don’t know what will come. I can make some guesses about some of my issues. Some of the guesses are not good. I don’t know if we will get appropriate support in the appropriate time frame. The odds are against it. Things at time look pretty grim but I do have work I enjoy, colleagues I enjoy, friends both of the online only variety and the in person kind, enough granola bars and ensure to support a couple of city blocks through an earthquake or two, some recreation (not enough according to my sister-in-law) and the best dog in the entire world. So while the darkness and the pain and the fear can be all consuming I have marveled at these other aspects of my life. They don’t erase a lot of what is not going that well but no one can. There’s just so much going on some of which just needs to be dealt with and some of which well I have no idea and those are the things that scare me the most.

Overall the outcome is certainly far from known and that is a source of stress but that’s really the way it always is. It is just most of the time things are set up better to hide this fact from us. For people who were very worried or scared for me I wish I had some great comforting thing to say but I don’t know how things will go. I hoped given we know the formal side of support is going to be a battle and it’s a battle that has historically cost me a lot listing the less formal, sometimes totally unexpected kinds of support would help. Now it is time to help my dog who is currently asleep next to his teddybear on the floor because he gained weight this summer and gave up trying to get back up here into bed and try to sleep myself.

Quiet No More

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It has been pretty silent here. In the past month I have attempted a few posts that wound up not being something I felt I could put up for one reason or the other.

On the first of May I went into hospital. I was depressed for one thing and my doctor wanted some tests one to try to qualify me for the ever elusive services so we would not continue on the wheel we had been on of function worse services increase, first sign of improvement services decrease, x amount of time passes no appropriate services at all ad then repeat.

He thought it would be a few weeks. Since they can’t actually treat my depression I don’t think he expected to try too hard on that but they ran a lot of test and scans while they were at it and I was a total and complete mess. Months of dysfunctional eating had screwed up pretty well every thing in the chemistry panel and so on.

My doctor couldn’t quite resist one horrific kind of treatment which I may or may not describe later. He’s a good man with good ethics and I do believe he wanted to help and was probably subject to doctor peer pressure a little… I don’t know. It was awful and harmful and while he did stop it sooner than some would have, saying he thought it had been more harmful than helpful it’s still hard.

So then he thought well let’s eliminate some stress and get some more health things taken care of. The problem with that approach was of course they kept finding big things not small things. I came out of hospital looking like I certainly still should be in…  My knee surgery came up while I was still in so when I finally was wheeled home 3.5 months later it was with a brace on, and an indwelling catheter and a host of new medical woes to be looked into in the months to come.

Through all of this 18 months from when not being able to deal effectively with change blew my life so course until now I have sometimes felt guilty when I blog or read blogs. I felt like I had a dirty secret about my autism that I just realized while commenting elsewhere isn’t so awful.

When there were autism positive flash blogs at a time when I knew mine would likely cost me my freedom at least for awhile again I couldn’t be possible. Off and on for the past 18 months I have felt so angry at my autism. It feels taboo to admit it. Tonight thought I realized why it shouldn’t be. Why I had probably been ashamed for no good reason…

I have a lot wrong with me. Probably in terms of disability the next most serious is my arthritis. I was replying to a comment on a blog about how the response to the attempted murder of an autistic child was dehumanizing to autistics. Despite that being the central premise of the post someone commented calling the victim a burden and out came my deep dark secret.

I was trying to explain why it is never okay no matter how much harder than average it is to lose sight of the person’s humanity. That in my own case I had done that a bit to myself this past week apologizing for being a source of stress and the family member in question wrote back to remind me of everything else I was. (Considerably more positive than stressful thankfully because in my depression I had lost sight of that)

I admitted I get mad at my autism. I do imagine that without it 18 months later I wouldn’t be hanging on by less than a fingernail. It is big to move for everyone. One of the higher things on the stress scale I gather but millions of millions of people do it all the time and very view are still totally messed up 18 months later.

Still the anger I feel about the degree to which my autism makes dealing with change not just difficult but for nearly every kind of change close to impossible isn’t really that different from the anger I feel when my arthritis eats up yet more of my mobility and there is a mismatch between what I think I should be capable of doing and what I can. In both cases you feel angry, you reach acceptance and then you move on. In the case of my current upheaval I do seem to be breaking records in the not able to move on category but that does not make me less than human.

I had felt like a traitor to the cause I think at times when I felt anger or even fear when it came to my autism. Sometimes I feel like it may have cost me things I dearly wanted even though it might be more accurate to think a medical system that makes artificial barriers when it comes to autism and decides who gets support based on things that don’t have anything to do with their actual autism could be a culprit there.

Very recently someone who has never met me made a decision about the only service there is for me at the moment, The  only service outside of hospital that ever had any success but this administrator has never met me. She concluded it wasn’t clear enough the service even helped me and therefore didn’t want me to have it. In the end she had to agree to every other day for a month. Her reluctance to have me seems to have trickled down to staff who previously were capable of treating me like a human but now focus on that date and making sure I don’t get a second too much of service. Somehow this week a a doctor’s appointment they had nothing to do with and Rosh Hashanah counted as service so  saw them all of twice not the three to four times we should have.

I cried about this when I heard. Right now things are very tough for me most of the time I am alone. Without services I have no chance. I felt angry too as since I had very noticeably gotten worse each time service from them dipped below about 4 days it couldn’t be clearer I benefited. My case manager pointed out I don’t get better and my affect doesn’t always match how I am feeling.

I felt discriminated against based on having multiple disabilities. My autism causes the affect mismatch. It sets up this weird situation where if I fall into a routine activity I guess I just do that activity and the other concerns are absent for a bit. I look better but when asked how I feel – the examination of which isn’t part of the activity- I have to answer truthfully and the answer hasn’t been good lately.

Apparently as far as depression goes it is very rare that a person doesn’t respond by the 4th medication prescribed so we have a support system that is geared pretty much entirely to a quick chemical recovery and I don’t fit. My autism gets blamed for the medications not working rightly or wrongly. My autism gets blamed for other interactions with the various teams being tricky (rightly in those cases I suppose) but is it fair that while extremely acute my level of service was based not on that but by the perception of someone who has never met me? Even the team members who don’t especially like me know about the affect mismatch and I would be surprised if anyone who ever worked more than 6 times with me could say with a straight face I did not benefit.

No I don’t get well. Part of why I don’t get well in a nice circular way is the continual stress over services and support. Part of why they don’t see me get well is even at the longest time frame they offer they are not around long enough to see it. With this one I have wondered if I will see it.

My battles are not that different of a parent with a child with autism. Services and support being the usual things that drive people to despair. I get it. Because I am also depressed unfortunately the lack of those things has caused me to want to give up but I have done the appropriate thing when that was the case. The option when you feel that bad is not a good one. I imagine if there was a separate child me I had the charge of and I could not cope it would not be nice to have to say as much. To accept whatever might come of saying this is too hard. Something awful will happen. However it would be the only ethical action to take.

So now my dirty secret is out. I sometimes am angry about my autism. I sometimes wonder what my life would be like  without it. I am not quite sure having typed something similar in a comment why I felt such shame about feeling like that for so long because of course it is so similar to every other condition I have that is a departure from the “norm”. If it is okay to cry at the mobility arthritis robs from me well why feel like a traitor for crying sometimes about my autism?

Part of why I was hesitant to blog again is everything is still in turmoil. I have resumed some of my usual activities in creative ways for now because of the immobilizer on my leg. I have resumed my part time work although I do it from bed. (Don’t get any fanciful ideas about what I do for my work based on that)  I am doing my best but it’s been stressful and hard and I know my doctor isn’t sure what his next logical move is. He’s semi-annoyed at my orthopedic surgeon for not doing the first kind of operation he planned. I would have been immobile longer giving him more time to scramble to find something better than the 100 minutes of really low quality house cleaning that will soon be all the support I get period. Oh and the 60 minutes a month of my shrink, various and sundry other specialists slicing and dicing my body etc…

Still and all although I spent the bulk of my life identifying as an alien within myself to get me through the day, and even though I had a doctor who eventually announced I was right about that due to him concluding the sum total of everything different about me must be something in and of itself and wanting to look into that I am 99.99 percent sure I am human. While the occasional twerp has compared me to an animal and so forth the only one who gets to take away my humanity is myself. I do reserve the right to opt out of being human when too many humans appear to be doing and saying inhumane things.

People can only do what they can do and I have not had the energy to be out there too much on the outraged front as far as the latest event goes. I know there will be more until the culture we have changes entirely. It has to be challenged every single time any rationalization is made for killing a person based on well anything. I was going to say disability but recently someone was murdered in a brutal way for being transgendered and that is not okay either.

It is possible to say no it’s not okay to murder because your child, or charge has this or that and the mean school district or mental health people, or various other service providers are being insanely difficult. You can in fact acknowledge the many ways we could build a better system without linking the need for that to murder. We need better support in my own case not so I don’t succumb to my depression and give up totally but so that I can become a tax-payer. I may score in the totally hopeless range in the scales for daily living and adaptive behaviour but on the IQ test we had quite the opposite score so how did I get to be 45 and still be a drain on the taxpayer instead of paying taxes? It’s easier?  I fall through the cracks? Those questions are the reasons I am told but I phrased them as questions to highlight how silly it is.

My bottom line when I try to explain why my current life makes me unhappy comes down to it lacking a lot of the things that adults take for granted their lives will contain often without too much effort. If I thought all those things were truly impossible I would not get upset about it at this point. I would make my peace with it much like I know I will never climb a glacier again. It is knowing I could do so much better with support and knowing how horrifying my life is without it that makes me upset.

Ultimately I guess I cannot dictate to people as much as I would like to that whenever they see a rationalization for murder they challenge it.  For anyone but myself I cannot say please you can say how they system needs improving without linking the current state to an excuse for murder and so it goes.  I took a lot of tests this summer. Blood was drawn maybe 50 times and the one thing that did not come up in all those tests is that I lack humanity so please don’t rob people like myself of it with thoughtless comments.

You Need a Mommy

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I have been quiet. Things have gotten more difficult and my capacity to cope with anything had taken a plunge downhill. I did not think it was even possible anymore but one should never wonder how much worse things can get it seems as the answer always seems to be that they can indeed get worse.

 The wisest words about my situation were spoken by a three year old Friday morning, I had agreed to look after him so his mother could attend some kind of course near where I live. Since the plan was for his mother to drop us off at McDonald’s so I would at least eat and he would have access to the play structure or the equally as interesting swivel chairs she popped into the bank on the way before leaving us for a class.

“Do you have a mommy?” he asked. Since he was not distressed I took this for a question and not a pronoun issue. “No,” I said then as that seemed inadequate I amended it to, “ I had a mommy”. He did not veer into issues of why I didn’t have one. I seemed to be confirming something he suspected so he seemed quite satisfied with the answer. “You need a mommy,” he declared with conviction.

That is no doubt the most succinct summary of my situation that there can be. If we define “Mommy” as someone who attends to your basic needs without question, who while she may be exasperated at times by those needs still seeks to fill them without faltering in her devotion that’s also the best treatment plan yet to be devised. The fact is I don’t have that kind of “Mommy”. I never did. It is certainly only that level of someone else looking after the details that would remove enough stress to just get better at this point.. There’s no such figure in sight though.

I do need a Mommy. A three year old being able to see that clearly is about the closest thing in my life to a mommy like level of insight. While his own mother worries about my eating and lack of laundry access enough to do something about it more helpful than telling me to remember to eat, part of the job description of Mommy no doubt includes this sort of cutting to the heart of the matter. He would already be an excellent Mommy if the task were not beyond his fine motor skills, his height, and certain legal issues. Also let’s face it a Mommy who has to be sold on washing their hands and holding your hand when crossing traffic is a bit of an iffy proposition. Still he correctly identified a need and a solution with 4 words. That it’s an unworkable solution doesn’t make it less correct. I have been offered reams of unworkable solutions by much taller and learned people than he is. We all grow out of the clarity of being 3 I suspect. There’s a wisdom afforded to those new to the world where a lack of experience with how the world actually works gives them the least cluttered view I think. I only suspect rather than know that people grow out of that clarity because it seems to take some residual 3ness to accept what is said as wise not baffling. To not dismiss it because it comes from someone who rarely said anything 6 months earlier and still is more prone to ear piercing tantrums than one might hope.

I do, indeed need a Mommy. Perhaps they should spend some of the money they currently spend documenting how my not recovering from my depression is somehow my fault so they can excuse the numerous failures to use the resources that do exist to hire a Mommy for me. I will wash my hands, without prompting in all likelihood but the rest would at least in the immediate future be up to them.

For the past 16 months in the wake of my world essentially falling apart due to a change far larger than my capacity to handle it and subsequent medical and bureaucrat errors compounded with the kind of life that seems stuck on the setting of pour on the bad things I have been treated to far too many people weighing in on what I need. Most have so little clue about autism that they can’t even see how ludicrous their simple solutions are and for some reason I am expected to listen to the same non-solutions get voiced by whoever it is that is dealing with people at the end of their capacity to cope.

One such person just left. I know how they see it. They see me as unwilling to do simple things like remembering to eat. Clearly to her and 100 like here because I have been capable of caring for others this is a choice on my part. I have ensured others are fed, bathed, even continue to breath at the extreme so not being able to meet my own needs has to be choice. I just need to choose to be better and apply sufficient effort. We will have to overlook where I would be if effort were sufficient or any of this was an actual choice. We will have to overlook the judgement that comes as part of these non solutions. Implicit and sometimes quite explicit in these solutions is an accusation of not trying hard enough, not wanting to be well, of exaggerating how bad it is and so on.

It’s hard to hear that you are not trying hard enough when you have tried and tried and any time you were making progress supports were withdrawn abruptly and care plans overturned. Apparently if I only wanted to I could replace all that with reminders from my tablet or a schedule. As if I have not spent my entire life experimenting with variations on that theme and don’t know that I have to already be doing much, much better than I am for that to be even a stop gap solution. Stop gap because even at my best my I don’t get close to desired capabilities in many areas.

I live with contradictions. Wanting to be an effective self-advocate while going to great lengths to try to blend in even when I know full well I cannot even at the best of times. Accepting my autism on an academic level, believing that acceptance and actual inclusion trump faux awareness but being a big barrier to my own inclusion.

 The past two weeks were even worse than normal. Last Friday night had me approach “my” seat at the Jewish Community Centre where we hold services to find someone in it. Some weeks it has come up I am coping well enough to handle this. I do after all know it is irrational but for every place I ever sat more than once I have a seat.

I arrived with our congregation president. She’s quite assertive and willing to make a scene which I desperately did not want. I froze on seeing my seat occupied. I was not able to ask if the person could shift one down. I’ve asked before but it wasn’t possible even before I retreated to the wall to contemplate my several all seemingly impossible choices. My friend first tried to convince me to sit where she was going to. I could only shake my head. I knew what would follow would be a fairly loud eviction from my chair by her of the interloper and feared I would have a meltdown that was a bit more obvious than the sort of implosion I was having then that had me rooted in place and incapable of action or speech but at least not in tears. Fear of a scene got me to the kitchen where as luck would have it the president’s partner was doing some task or other. She called out where I was and instantly had the insight I might be hiding but it was too late. My seat was indeed free Further escape to the bus was not even an option. I had been spared only listening to how she put the eviction.

 That however much I dreaded this action that this was actually the best solution should be stated not just because I know the person reads my blog because any contemplated other action or reaction would have made things worse. Had I fled or wound up in tears I don’t doubt both that I would have worried my friends more than they already are and in all likelihood had a rabbi on my doorstep instead of an email from him during the week I don’t doubt. This way much of the rest of the evening played out in the usual way.

 I returned to the room. I sat down next to the interloper who is actually a perfectly nice man when he is sitting somewhere else… He, I think trying to be helpful and inclusive, said the sort of thing people say when they think the difficult part of change is not understanding that it happens but coping with that it has happened. “Usually we start on page 120 but some weeks it might change.”. He may have even been worried that this week would indeed be one of those weeks rather than seeking to inform me of the obvious. I am not as invested in starting on page 120 as I am as my chair and the blue cup though. It’s almost inevitable that we will in any case.

In the aftermath of my implosion and escape I was still in very concrete mode so all I could do for 30 seconds was wonder why he was explaining the order of service to me 20 months after I started attending, Then I realized he was trying to be helpful but I had already managed to sound a little annoyed I suspect when I had managed to get an, “I know”, out of me,

I didn’t know what to say really, It was thankfully a day where the theme was sombre enough that eviction from the chair he chose first wouldn’t I hoped stay in him mind long. I wouldn’t have been able to articulate why I could know that someone might be in my seat and simultaneously be bothered by it or why on some days I have the capacity to sit elsewhere and cope with the dissonance that arises and sometimes even surplus so I can still get something beyond coping from the evening. Our rabbi who’s rabbinic sense either tingled about me or who more likely was told I was not doing well emailed something about how when the wine glass is already full one drop is enough which again is something I know but did make me feel a bit less guilty.

I so wish that this fact that things can and do change that had eluded me. That it was new and transformative knowledge that having been given it I could work with it If only it were knowing and not the varying capacity to cope that is in the wind. I would have transitioned seamlessly to a new home and not gone through any of the past 16 months. This not so missing piece of information presented in what was probably a sincere attempt to help left me mystified. This was something I know. Oh how I wish it was new and exciting and transformative information that I had just been missing. I love information. Sadly the most interesting part of this piece of information was it being offered up.

A similar approach could be taken with the wine analogy. I know exactly that something very small can be the one more drop that makes my issues less invisible and more visible. I struggle with the competing desires of really accepting my own autism enough not to hesitate in areas where getting my needs met means making a scene and being quite private and wishing I didn’t have needs that were not met without some level of hassle and intrusiveness. The difference being that however tritely, it sums up my reality of a life spent too close to the edge of capacity, it did ease some of the worry about my needs being a hassle, or worse beyond comprehension, I suppose something cannot be in danger of seeming trite without also being very true. Even when it is truth you know too well it can help to hear others frame it. I usually think my self-esteem is actually quite good but truthfully that tends to be in areas not impacted by my autism.

It makes no rational sense at all to be more apologetic about a melt-down over a chair than the bus kneeling when it picks me up but that’s part of the ongoing contradiction I live with. As is trying to encourage actual acceptance and inclusion while having as the biggest barrier to inclusion my own desire not to be difficult. I don’t have the kind of in your face kind of bravado some seem to have where their diversity dang well better be accommodated or there will be heck to pay, I can have it for official, tax payer funded entities for some reason. I expect official support to accommodate me. It doesn’t but that doesn’t lessen my expectation for some reason, It again makes no sense as of everyone in my life the group most likely to put themselves “out” on my behalf are this very group. They have shown it over and over but one can loathe Voldemort speaks for presenting autistic people as a burden and simultaneously seek not to inconvenience anyone. If I was someone else I would probably blog about how annoying I am for that contradiction. Wait I guess that is what I am doing.

 As my young sage worked out if I had a Mommy she would do all that heavy lifting for me. I have seen mothers ferociously advocate for their young over much more trivial things, I have similarly advocated for other young charges without a drop of regret for being a bother. Did some one really ask me loudly, “What’s wrong with that child?” when boarding the bus carrying one of my charges. Strap yourself in ladies and gentlemen because the bus ride is about to get a bit bumpy. Did a similarly enlightened citizen really express when passing a friend and myself and the same young charge on the beach how much better it was in the old days when people enjoying their day didn’t have it ruined by looking at children like her? It’s about to get educational. Did her companion while eying my friend who was native really nod at her and mutter something …? You get the picture. It didn’t wind up educational My friend was used enough to racism to find it amusing on some level and pity them for the fools they were and so was expending some effort to keep me on the blanket eatin g my fries and not running down the beach providing commentary about who the real blight on the day was. The offending child had not been seated a bit further up from us and was entirely too absorbed in digging in the sand to need to do any of the explaining of the too frequent kind. So we moved on.

 My entire life I can be a lion for other people. I can be that lion even in areas where it matters far less than for racism and able-ism. Heck mess with “my” gamers and anyone who has worked with my knows that my rants will be somewhat endless.

 I think as much of my silence post the explosion of followers after my post about awareness came from this contradiction. I was overwhelmed by the sudden unquiet nature of this corner of the internet, my life did take several turns that meant adding the expectation I write on top of everything else I couldn’t deal with was too much but I also felt like a fraud of sorts.

 I’ve said my acceptance is always an ongoing thing like pretty much every other thing about my autism it defies quantifying. Compared to when I was 20 and Data was my role model and my goal the same as his – to outgrow my programming I am a model of acceptance. Having realized at some point that Seven of Nine was the healthier role model that was huge growth. For those of you somehow unfamiliar with Star Trek two helpful bits of information. First if you actually know me in real life or at somewhat close to me in the ways people wind up close to each other on the internet it is probably best if you not admit this. You won’t exactly be dead to me but you will enter a category of people I have some doubts about. Second in the interest of understanding what I am saying Data was an android who was perpetually seeking to be human. A high tech Pinocchio who for a time seemed to embody my reality in a way that stirred me.

 Seven of Nine was a human who had been assimilated by the Borg. Then rescued by the crew of a later series than Data was on. I won’t trouble those of you without a background in the mythology of Star Trek with why a Borg is a better role model but it boils down to her being quite different from the crew she found herseflf living among despite a certain similarity. She had been human but some elements of being Borg could not change without killing her. Having been Borg since childhood was it seems as pervasive as autism is.

 The Borg value knowledge and seek perfection. While their method of getting both is a bit horrifying one can hardly argue with the goal. Seven herself is a logical, very rational, intelligent woman. She sees the humans around her and seeks to be more like them in the ways that she values but retains her sense of some of the things she values highly no doubt as a result of a life as Borg as being desirable and worth holding onto all the same. She grows emotionally but while she has doubts about various aspects of humanness those doubts are expressed in far healthier and realistic ways than saying grabbing an improved emotion circuit. She is able to function as different in a noticeable and to some degree even feared way (her perfection as a role model having grown I suppose as fear of autism has grown) and still be valued by others and herself. She does not approach a situation with the mindset of one who’s difference automatically, even to themselves makes them less.

 Some may be angry at being conditioned to approach very key parts of identity this way but conditioned we are and it makes some sense. It is adaptive to some degree to know the ways in which you differ and take them into account the problem really is the internalization of the message the undesirable difference is always on the side of the labeled.

 The Doctor was more prone to morbid reflection on his different status than Seven but while she had more life threatening malfunctions of her all important cortical node than he had variations on crashes she is more at peace with her reality. She grows towards that which she values of what she sees and is clear on what she does not view as worth pursuing. She bends over time on a few of those things but overall her sense of self worth is not negatively impacted by being who she is. Unlike myself, who finds myself apologizing for a far more reasonable accommodation for my autism than what her crew goes through to get her spare parts she doesn’t tend to apologize for that much greater hassle. She occasionally expressed some wonder that they would but her basic right to exist and by existing have her needs met without too much quibbling about how inconvenient those needs are is an underlying assumption.

 I am not really sure if I will get to that point in my lifetime to be honest. It’s a bit reflexive even in the most accepting crowd to feel embarrassed by the joke I don’t get or the entirely irrational yet absolute need for the comfort of sameness. On the same Friday that my pint sized friend correctly identified my need for a mommy the opinion of the congregation about which tune to use for a prayer was expressed in terms of same of something new. My immediate and strong assertion of same drew some looks but that included one from the person leading who seemed to realize I was so vocal that it should be the same it probably should be. At times when people have really pushed the matter, I have articulated that given the fact that change is a bit inevitable my preference is for them to pick a few things and for Pete’s sake not change pretty much every element of the service, They are a bit self-regulating because the prayers inevitably sound better with the usual form and tune so without my having to push the matter at all a too heavy dose of change tends to be followed by months of barely deviating at all from the usual until people have forgotten the horrors of when they tried this tune or chose this prayer over another. I suppose there is some automatic comfort in knowing you are with a group of people who when faced with the question of why we do some fairly strange things are about as likely to answer with a shrug and “tradition” as a lengthy discussion what various scholars say on he matter. Being a fan of both it’s hard to go entirely wrong.

 That at my worst I feel I have to apologize for being me in the setting most likely to accommodate for me is sad for me. I suppose if like the various bearers of support the government dispatches they were actually unwilling to accept me it wouldn’t bother me at all to have had the please don’t make a visible scene kind of reaction to what was a very simple conflict between a need at an extreme because of how badly everything else was falling apart and someone else simply being there first.

 In a setting where I am included enough to be obviously to others part of the “in” crowd despite being a noticeable outlier makes this failure very clearly mine. Another contradiction. Absent the rage I can have for the irrationality of entire systems that cannot take into account the existence of a person like myself. Being angry at entities as faceless as governments and health authorities or Voldemort speaks is easy. Seeing the ways in which I am an obstacle to myself considerably harder. Fixing that issue having identified it, as I say a work in progress often undone or mostly undone it seems by whatever else life is serving up.

 It’s much harder to say I create additional issues for myself by not accepting my autism on the level that some people in my life are prepared to. I know some of that is a product of how badly I am coping overall. Some however I think is always with me as an echo of years striving to be what I could not. I have for the most part ceased seeking the impossible and even identified the way in which being “normal” might be worse but it I a bit of an infinite acceptance loop. Having overcome trying to overcome my autism I am left trying to overcome apologizing for that which cannot be changed. In better times that would be such a faint echo as to not register much on me mentally but at a time when a child can identify that I need a Mommy that urge to not be a bother, to not have people need to alter anything for me is manifestation of non-acceptance. While countless articles will blame this reflexive devaluing of myself on the society that creates and nourishes it there is only some truth to that. It is true messages about your non-normative reality get internalized. How could they not when the entire format of you life has you as a case in need of management rather than a person? When at an extreme by being able to articulate some of your struggle you are seen as a danger to those who are “really” autistic simply by doing so. People might believe your life isn’t 100 percent tragic if you describe it. People might see that even at the grimmest of times your life is a life and has value and meaning not just to yourself (which should after all be enough) but to others. Still a life lived having to state those very things is taxing. Your default position shouldn’t be having to justify you life as possessing value despite the dificulties. It’s tiring.

 If I could lay all my own lack of acceptance solidly at anyone’s feet I would be off the emotional hook but it would not be honest. I don’t know if I will live long enough to be in a state where I don’t feel apologetic for my less cleat cut needs. Lacking a Mommy it is my responsibility to articulate what they are. One would hope that when presented with a situation where I can’t do that and someone else is both willing and able to champion my needs I could just accept that without embarrassment and without apology. I can’t though. Not right now at this time in my life when so little is certain about the shape of each day or my ability to endure it.

 It is always the small things that we fail to account for that wind up becoming big at a time like this. The bursting into tears on the bus when one cannot conceive of either going on or ceasing to go on. Well okay that seems like kind of a big thing but the crying on the bus itself is small in the grand scheme of things. The trivial change not coped with being harder to predict than the huge one that most would by now say I would do well to avoid. I need a Mommy and while some might say I have a small army of such things standing by of both genders standing by to secure things like my chair, demanding that I eat, and so on that is somehow not quite as comforting as the child’s version of a Mommy entity that can deal with everything for you and about you withought their devotion to your needs faltering. The presence of so many people in my life tackling those practicalities from time to time should make me more certain it is okay to be as I am.

The kind of conviction I have when I place it in a spiritual perspective that it has to be that I am as I intended and by extension then my life has value equal to other creatures is sometimes starkly lacking in my day to day life lately. I suppose the real advantage of the love of a Mommy like entity over that of G-d is like the kneeling bus it’s concreteness. When you are young enough to be constantly with your Mommy or people Mommy enough like to be an acceptable short term stand in for her you always have that care and concern, and love and acceptance of the miracle you are being reflected back. When I am feeling only slightly better than I am now I can quite easily access the less tangible form of love and acceptance and renew myself on that but right now even that is a task beyond me. So I do in fact need a Mommy.

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About my “About”

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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.

Warning April is coming!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Day of Rest, Food and Rainbows

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On Thursday nights I have band. I always get wound up on band nights so it takes longer than usual to fall asleep or even get sleepy. This is not helped by the fact that Europe has not changed to daylight savings time yet so my slight overlap with my work colleagues is an hour later. Or by the fact that I enjoy talking to them so long after the things actually pertinent to my job have been said I tend to talk a bit more. By talking I mean typing as that’s how we communicate 99 percent of the time with them.

I didn’t fall asleep until 5 am. Technically I also have band rehearsal for a different band on Fridays but between my extra light on sleep night and knowing today would be different than usual I suspected it would be a mistake to push myself to get to that and still  be able to get my work stuff in the minimum shape to head into Shabbat ready for my Hebrew I graduation dinner. It was a day where I actually was aware enough to realize I needed to pace myself to stack the odds better in terms of a good outcome. Sometimes I just carry on with what I planned even though I suspect it will be too much so just knowing not to was positive for me.

The way my life worked out I started this class the same day I officially started my new job. I had practices for more than a year with an app to be able to make it not a total waste of money, as I have dyslexia. It’s impact is largely hidden in a very over learned character set but painfully apparent when I try a different one.

Back when my rabbi’s wife was explaining to me why I should take it and my enthusing about my meeting new people, getting more familiar with Hebrew, and getting out of the house I was in a state of mild to moderate panic and that kept increasing as the date drew closer. It didn’t help that the date of my new job also loomed closer at the same time.

Even getting out of the house is a tough one for me right now as with every other aspect of my autism as stress goes up so to do my symptoms so my tolerance for the sensory experience that is everyday life is at close to an all time low. I don’t remember it being so bad since kindergarten actually. One day I will write about the sensory nightmare of kindergarten.

I did convince myself though that of all the situations the world offers this would be the closest to an academic one on offer short of actually returning to school. I have a high degree of academic comfort. Test off the charts for it on some odd test they give you in university at some point. So I convinced myself I could indeed go and would likely survive this encounter with an unknown place and and unknown quantity of unknown people.

I did more than survive of course. There were more women than men in the class and women have always scared me more than men. I guess I had not interacted in depth with many since growing up and I had missed that most women do grow out of the kinds of behaviours I came to associate with being with women when I was still growing up. It was good for me to learn that there can be less terrifying women.

My class was as filled with kind and compassionate people as my congregation is and eventually I even had a regular study meeting with someone who lives nearby. I don’t take those things that seem like no big deal for granted. To me having someone to meet at a coffee-shop and study Hebrew with is huge.

As difficult as I knew the Hebrew would be it was the people part that truly terrified me as it always is.

So today because of the deviation from the norm that the dinner would bring about I thought it best to lay low, rest a lot and go into the evening feeling calm and rested. It was potluck and I wasn’t going to risk the horrors of time spent cooking going wrong so I opted having heard what people would bring to get fruit. A slacker in the potluck department I guess but I wasn’t gambling anything today. A person in my class picked me up and we headed out.

We had our dinner on the top floor of what is one of the taller buildings in our downtown. Because we are on a tectonic plate what’s allowed in our downtown is smaller than most but still the view was fabulous and so we got on with the agenda of the night which was mainly to have a Shabbat dinner.

Some of the people in the class are in the class as part of either a return to Judaism or in preparation for a conversion so there is an underlying element of teaching people to be Jewish. A nudge towards being more observant maybe for some. The norm for the local Conservative community is towards fairly orthodox practices in many ways so the dinner had to be downtown in so those that refrain from travel on Shabbat could walk home. The bulk of the community lives near downtown.

It was probably the first and maybe the only Shabbat dinner to be held on the top floor of that magnificent building. It was in a very famous company’s very nice local office and some of us joked that it might stir a massive move from our own occupations as what passed for a boardroom there was very sumptuous indeed.

So we did the usual dinner things which were new to some of our class, and we ate and talked. I realized for the second time in under a year that I was at the very kind of social gathering that had terrified me all my life and I wasn’t anxious, I wasn’t hiding out in the bathroom, and I hadn’t even brought my camera so I wasn’t even hiding behind it. I was talking. I was actually feeling not too anxious at all. In fact since for some of the formal parts were well known to me I felt down right at ease at times. When I was young I did best with highly structured social activities and I suppose the fact that there are some highly structured and even better, pretty much unchanging aspects to this kind of dinner did play a role in my ease.

We had to speak a bit about the class at the end and were given our certificates. I didn’t say because I hadn’t processed it that the achievement for me that mattered more was the very night. Not the newborn, grasp of Hebrew phoenics but having stuck it out to the point where I knew that many more people and could eat with them without being in a blind state of panic.

A rainbow showed up at some point. A rainbow has special religious meaning as a sign that G-d will never again get so mad at what must be his most trying creation and wipe the bulk of us out. I didn’t attach any special significance to it other than it being the time when people were looking at the rainbow that it was quiet enough for me to appreciate not the miracle that we were in no imminent danger of being washed off the planet, but that I was there at all.

In what is still the hardest time of my life ever, when I am still coping with more than I think a so called “normal” person could handle in a short span of time I was not only still alive but some forward progress was happening. I was able to sit and eat and talk in a group of people I didn’t know 5 months ago. That for me may be a miracle worthy of a rainbow in and of itself. Also the time to appreciate that very thing. That while many aspects of my life face new and difficult, and sometimes seemingly impossible challenges some progress is happening where I might least expect it to.

I am grateful.

Autistic Behaviour has a Purpose: –

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Or How Being a Social Skills Holdout Resulted in a Richer Life.

It feels like I have been warning people against eliminating autistic looking behaviour for the sake of it without recognizing it’s functionality for many years now. I wrote about it over 12 years ago even but had spent several years cautioning parents about choosing therapies that had this as a central premise. a The drive to value being indistinguishable from peers over being functional has dominated the market that is autism treatment for far too long. Autistics behave as they do for similar utilitarian reasons that “normal” people do. Behaviours have a use for the way our brain is wired.

Today someone posted http://pdresources.wordpress.com/2012/03/08/encouraging-eye-contact-may-disturb-autistic-kids-thinking/ Which for the holy grail of social skills treatment- eye contact actually demonstrates this. Granted the subject pool is a bit small but I would guess anyone thinking about their thought process can do a micro-experiment and get similar results.

Autistic people need more processing time on a lot of situations that are “easy” for the typically wired. It would then make sense there was more gaze aversion overall. If your face tells me nothing useful about what I am processing looking there is a waste of available processing capacity.

Eye contact is something I have refused to fake. If I feel comfortable with someone and the situation is not overly taxing it will happen. If not it won’t. I have never been cooperative with those helpful hints to look at the forehead and so on and since I spent 6 years studying psychology I have enough of a neuroscience background to know that those hints – often complied by educators and job coaches don’t make good sense on a neurological level.

Not a single time has my lack of eye contact been an issue unless I have been with the kind of professional type person who really cares about eye-contact in i’s own right. I have never not gotten a job I interviewed for. Granted one of those jobs was in university where my autism was not exactly a well kept secret but my lack of eye contact has not had the impact darkly predicted. People do tend to trust me and not once has anyone ever expressed concern about it beyond medical types. I recently even asked some people why and most responded along the lines that I had some other hard to describe qualities that conveyed a sense of honest and decency to a high degree. I suspect indeed that were I inclined to force myself whatever is coming through to the relevant people might be compromised.

For all the years I was ashamed of my autism I still wasn’t very tractable when it came to certain things. Before I made an uneasy peace with it (I say uneasy only because while I have come to terms with my autism, I am not always at terms with it’s sometimes catastrophic impact on my life) I still routinely told people why they were wrong to include some things in their social skills programs. My biggest one wasn’t eye contact though. My huge burning autistic behaviours that shouldn’t sought to be changed were a lack of social lying and self stimulatory behaviour. Because stims are a big topic of more interest to the average person than social lying I will save that for it’s own post or posts and let myself write about the big issue in my own mind.

My BIG, issue is the whole social lies as useful, teachable and desirable. This is such utter bologna. If one stops to think how much more confusing and labour intensive polite, lies make the world I am really shocked more people don’t stand up and say to heck with all our ritualized niceness. It would be an autistic paradise if one could be certain you were getting an honest response to some enquiries on the first go at it.

If you are neuro-typical think about how many times people who don’t know you or care about you ask how you are. If you are North American and complying with social norms you probably say fine. In all European countries I have been in there is some variation in the ritual but a range of socially acceptable answers all the same. Indeed in Europe the ritual is slightly more informative as there is more than one answer considered normative, a range is technically okay here but fine is very dominant as the correct answer, the more interesting issue is why are random people asking? Why do we engage in this ritual that strips sincere enquiries by actual friends of the liklihood of getting useful information?

My transformational I am absolutely never even going to pretend to go along with this ritual happened in my 20s. I passed a good friend on the street. I already was strongly inclined to only ask if I cared and considered the data I got back to be valid. This encounter would change that.

I had been in group therapy with this particular person. In that, especially aggressive form of therapy they even discouraged the use of the dreaded “fine”. As a result of being considered socially isolated I had been allowed to break one of the cardinal rules of the group which is while friendships were normally discouraged in mine they were encouraged. That made me a handy person to be friends with I guess as only by doing so could you have permission to carry on hanging out with others you got along with. So for a surprising number of years afterwards a group of about 8 of us met regularly for cards and similar activities. I became quite close to a few of them and the person in this encounter was one of my closer friends at the time.

I asked her how she was and she responded fine. I took that as valid information and carried on towards my bank. I heard her call my name. I turned to see her burst in to tears, clasp her face, and exclaim, “I can’t believe I just said that.” It turned out her mother had killed herself that very day.

Surprised that even a person who had had so much conditioning towards good communication I had to take action. I engaged in a couple year process of experimenting with the whole “How are you? I am fine.” ritual. I experimented with leaving out any answer at all over 2000 times to determine to a high degree of certainty that people actually usually respond as if you have said fine. You don’t even have to voice it. Most people either hear it or at the very least automatically respond with the next line. (It would taint the spontaneous experiment to question which so I still don’t know) I haven’t performed any recent studies on it but I suspect it is not that different. For the benefit of the few people who would notice and be uncomfortable with the lack of answer I experimented with humorous but still true answers. Overall simply omitting any answer at all moved things along faster. Perhaps my humour was geared a little too much in the direction of science but if the goal of a forced, ritualized encounter like at the grocery store, or bank is a fast return to the business at hand simply not replying worked best.

The problem is all around you are people like my friend. If you actually care about them the habit of an automatic fine response and other similar socially done, sometimes nonsense scripts is they generate an invalid response by default. Since I only ask if I actually care I don’t want to have to ask really. I sure don’t want to have to ask that a second time, yet for the most part if my question was motivated out of a concern I do. Asking a third time gets annoying but is still sometimes useful. If I care about keeping a friendship I eventually have to spell this out to people. I want to be a good and caring friend but the switch in my brain is a bit stuck on literal and since by virtue of being my friend I expect you to know that I will only dig around so much before I go back to either considering your answer valid or not asking if you want me to actually be a good friend then you should comply with the expectation that you return good data. It’s not blatantly lying to participate in a prolonged exchange where you fail to get a real answer but it is not something I want to encourage others to do or to participate in myself.

It’s the same with the classic social skills story line about say Aunt Edna. You are shopping with your somewhat massive, entirely hypothetical, Aunt Edna and she asks you if the pants she is trying on make her look fat. In reality your aunt is actually fat, the pants have nothing to do with it but the pants in the scenario are not helping matters. The taught social behaviour tends to either be to reassure her they don’t or to compliment some other aspect of the pants. “That shade of blue looks good on you.”

Pretend you are Aunt Edna. (It cracks me up that the people who come up with these programs test out normal on the empathy scale and I get a 3 to 4 depending on how I interpret the questions any given day – I don’t think they are actually measuring practical empathy) If you are Aunt Edna you probably know you are overweight. You actually do want to do the best you can with the clothes you buy to emphasize your good points. You have just received bad data about these pants. You may act on that data and buy them and wear them. People will think they are hideous on you and so on. How is it more caring of your hypothetical aunts feelings and experience to encourage her in this folly? Obviously it’s not, yet scenarios very similar to this one abound. (I know because even at my ancient age the occasional very keen person tries to get me into a social skills program)

The Aunt Edna situation where your “white lie” is used to spare someones feelings is the usual explanation given to kids about when you can lie. What a slippery slope. I would think so especially for people who tend more towards seeing things in black and white which I have no problem admitting I do. (Honestly who cares to deal with shades of grey anyway? Aren’t they just confusing and annoying in pretty well every situation where an obvious answer doesn’t exist?)

Look beyond autism even. We have a society where the routine thing to do is lie. You will if you are an average person who works in an average workplace probably participate in more meaningless, devoid of good data chatter in a day than real authentic exchanges. What does that do over the long term to what we view as okay? We expect people in certain professions to basically be liars and corrupt. One of the biggest places we expect that is in government. Hmm… Is there a chance if everyone treated honesty as a binary situation we would have better communities? If we didn’t desensitize people to lying by expecting it and teaching those without a typical sense of social norms how valuable they are. Could we actually attract and keep honest politicians on board? What kind of society could we accomplish if we expected and tolerated nothing but the truth?

I live like this. I refuse to be anything but honest. Like eye contact none of the disastrous consequences in the rationale for teaching social lies happen to me. I am typically viewed as polite not rude. (With a tinge of abrupt I can’t quite get away from because I sometimes have to terminate an exchange before I lose key skills) People seek my opinion out more than normal not less. They don’t get hurt by doing so because I suppose they self-select. You learn to ask other people when you want a dishonest answer I guess. I don’t seek to hurt people so I nearly always remind people that they will indeed get an honest opinion. The result has never been a withdrawal of having sought my input. More and more often I am told that’s why they ask me. The only “bad” side effect from my point of view is that the circle of people who will seek my opinion extends past the usual rings of acquaintanceship. This would not be viewed as bad really overall. I don’t even view it that way most of the time as I am fully aware being a hermit isn’t healthy. So people make it a point to come to me because unique among sometimes a large number of known people they could ask they trust me to be honest. In literature about developmentally delayed children an option parents are given to encourage friendships is to make it attractive for children to seek our your child. (Cool toys, better than average snacks and so on…) Have I hit upon an adult equivalent out of sheer obstinacy? Well okay obstinacy combined with ethics and a value placed on logic that makes behaving inconsistently with those values not something I can tolerate.

I’ve explained why honesty should be binary to a lot of people. I only have one actual neurotypical convert to the cause though as far as I know. Well maybe not so typical if having listened to my 20 minute mini-lecture on it the response was that I was on to something important that he had not given much thought to so he would try it. Who knows? It works for me it, it appears to work for him. It could work for you even. It takes a bit of training of the people around you but less so if you are actually on the spectrum and people secretly fear you are a social skills hold-out. Still even if you are “normal” I suspect you could adapt this with relatively little training to those around you without anything but good consequences. This would be especially true if you love someone with autism. How great it would be to be a person who that person doesn’t have to spend a lot of time and energy trying to decipher. Still I suspect it has payoffs beyond that.

I know this honesty issue is described by some clinicians as part of my deficit. The degree of black and white thinking to fully flesh out the societal implications for going along with a keep Aunt Edna from wearing nice pants model of behaviour is probably pretty extreme but is it harmful? I am a person like other people who has certain values in my case honesty, integrity and rationality. How would it improve my life outcome to try to take me down a few notches there? How does it improve the quality of life of those around me? I think the answer is it doesn’t. The benefit to having me in a social skills program is being able to write in my chart that I am attending one. For those teaching these “skills” to be able to bill my government and so on. The only real benefit to me is satire. Any social skill that doesn’t conflict with my values I already know.

My binary theory of honesty, however black and white is still a conscience choice. I am 44. I could have learned how to fake all sorts of social scripts by now but what would it achieve? A magnitude shift towards insincere illusory closeness with people? I would seem more social and more like other people but it would be entirely artificial. To reject that is a conscious choice. It’s not driven by my “disorder” at all. It may have set my factory pre-sets a bit but I could have chosen to be otherwise to some degree by now if it seemed one bit logical or useful to do so. Ah pragmatics I guess I left out a core trait.

You may think I am deluding myself but as I am honest and do make conscience decisions about living honestly I am also authentic. While around me I see people have goals of being authentic and sincere if one avoids participating in rituals that would subtract from that I would guess it should be a default state. The thing is being real scares people. If you present a false you to the world you have less at stake. A lot of people enjoy Hallowe’en and Purim because the costumes are a concrete expression of the unrealness we live with day in and day out. That polite, insincerity that keeps your innermost thoughts and feelings safely stowed away and hidden under a babble of meaningless scripts and in some ways the world is more manageable. More manageable but not better.

I have a surprising number of very good friends at this point in my life. They all have a strong tendency towards being of the more genuine variety although perhaps not to the furthest extreme. I suspect other kinds of people would be too taxing to interact with in the long run. Even with those friends say at a dinner party my processing delay while I work out if something is a joke is a source of benign amusement. I don’t know why but I have yet to learn to put my tongue on pause while I process the content so I inevitably have responded to the literal content of a joke and then having heard my response it dawns on me that it was a joke. I am not stupid. Depending on how people react I sometimes wind up feeling stupid when this happens. Among my friends they don’t exactly try to hide they find this funny (which is good as that would be insincere) but that is covered for by a genuine affection for me so I can do the unthinkable and be at a party for 14 and realize hmm everyone here is an actual friend. Since I am selective about how I use words like friend that’s a shocker for me and not an expected outcome but I actually do think part of the reason for it is I am who I am.

My autism causes chaos for me at times. I am a great source of stress for my friends and family at those times. But like any real friends they are there for me. Should they need me I am there for them. I understand that is how it is supposed to work and that is the outcome for this totally social skills defiant, black and white thinker who won’t even pretend to humour you on the eye contact issue. Could we really hope for more? Could you hope for more if you changed your opinion on some of the classic “deficits” in autism and instead of teaching that autistic in your life to be more like you tried it the other way around at least for a little while out of fairness?

A Day of Laundry, Chaos and Rest.

by

It’s been a terrible week. Care that was supposed to happen and was somewhat vital for me didn’t. My father wound up in hospital briefly as well and there’s still all the grief and all the issues I had before my mother died. Felt very much like I was dangling from a precipice with something about as thin as a spider web to cling to but without the tensile strength.

I didn’t cope well. Mostly I coped by staying in bed and asleep as much as I could which isn’t ideal but was the only way I knew things wouldn’t get worse. I did decide I couldn’t bail on my band as the Country band I got roped into playing the drums for (The Haywires) had the concert on Thursday night and it’s a small group. Oddly popular it seems to me given how easy country music is to play. I take my responsibilities seriously so as much as I would have loved to just continue to stay unconscious as much as I could I wouldn’t stand up our group or the audience which admittedly not big was about three times the usual crowd so I went.

All my autism related problems get exacerbated by stress of course so my ability to shift my attention, get ready for band and get there was so much more complicated than in 2011. I actually started preparing four hours before I needed to be there and I still only made it by 4 minutes. Along the way I got one of those calls I don’t believe are so random. Without the call I probably would have hid out all of today in an unhealthy way, probably dragged myself to temple to not cause worry and then gone back into full on hibernation mode.

It wasn’t anything stupendous. It doesn’t take much to make a difference. The person had read my mother had died on Facebook and thought since she would be in my area she would offer to come by and give me a hand with my place, reasoning between my worsening physical issues and my grief I could use help. (I think she was probably among the many volunteers who packed up my last place so honestly she probably thought I could use help anyway)

I’ve grown in my relationships with people. It used to be hard for me to accept help. I felt embarrassed or ashamed. I had done a lot of that growing prior to my huge, life blowing apart reaction to my move early last year or the levels of help I had then would have been unthinkable I suppose. I didn’t have any choice in the matter really as sick as I was if people hadn’t been willing and wanting to step in and manage everything I could have done little about what needed to be done.

It’s 15 months later though and life hasn’t really improved. It many tangible ways it is worse. Every time my doctor got enough supports in place that we made forward progress someone would undo them with a stroke of a pen and so I don’t even take surviving for granted. When you can forget to eat for long enough that more and more kilograms vanish and forget just about everything else even if the long term effect of living like this wasn’t wearing me out that in itself would be dangerous.

There’s no appropriate support to be had. I fall through a gaping hole in the system that doesn’t know what to do with people who have both an autistic spectrum disorder and a mental health issue. My autism they say makes my depression untreatable but our entire system has been reworked to a medical model. The very premise of everything they do now is that some magical pill will make the patient better if only you can get them to take it. Eventually they will, as they have before say the autism is primary and I am thus not even their problem.

So we struggle and struggle, and get exhausted and mad and sometimes just want to give up entirely. As long as I can still get mad I think I will be okay actually but I know that eventually that anger turns into resignation.

So this woman who is close in my age but has young kids, wanted to come by and help but my place isn’t suitable for a toddler. There was a time I would have just said as much and not had the temerity to suggest something alternatively helpful. I don’t have access to a washer and dryer here and my landlords suggestion I suck up to the people in the two other suites where he managed to put ones in hasn’t exactly seemed reasonable. So I said how about if I went there and did my laundry instead and it was agreed.

That meant an early day for me. My schedule has become more erratic due to the international nature of the little work I do and I don’t unwind from band easily and tend to be up until 4 or 5 am on band nights so I was a bit hesitant. Yet I knew two things – that I did in fact badly need clean sheets and so on as I had last managed to have access to laundry facilities in this town at Chanukah, and that the guarantee of eating at least one meal and having some human companionship was not something I could afford to miss.

I miss being with kids. When I did respite care my charges grew up and while I continued to do the adult care for the only client I kept when my arthritis got worse kids are another thing all together. So there was a certain appeal to just spending time with a three year old. I had looked after him and his brother during the High Holy Days but had not seen the little guy since so my better instincts weighed things out in favour of going, of making the healthy choice for probably the first time this week.

It was a chaotic day. The three year old had grown up considerably since fall and was very verbal and very keen to tell me how things should be. He was also very eager to be helpful with my laundry. So that was enjoyable as they had a front end loading machine I actually would have gotten a lot sorer without my miniature helper there. A noisy day as well of course. As said three year old could and did have a few champion tantrums when tired, hungry, or surprised but that’s part of the package.

Improbably we managed to get through all the laundry as other changes kept developing to the plan so I wound up staying until it was time to go to shul. We had a brief period where we were left with just my three year old over-lord and he had a brief and complete tantrum at finding he had been left even though he had been fine with it when his mother said as much. I pulled out my tablet and he was quickly lured into playing with the piano program on there and then a board game. So I played with him and monitored my laundry and it was briefly almost quiet until the older child and a classmate arrived.

I was then in demand as an improbably old playmate but all the kids were keen to involve me in some sort of play about a monster. So the older one demanded I be various things the younger one protested no I should be a person until vampire was suggested. (I had tried zombie and werewolf to loud protests from the toddler) I immediately objected that I couldn’t be a vampire without a cape as the other vampires would make fun of me. (Vampires have standards I gather) That set all three children to assuring me no problem and going to get a cape. I remarked to the mother, that I had meant that as more of an obstacle than it was but sure enough a child sized reversible, batman/superman cape was produced and the 6 year old on seeing I got it on the wrong way around the first time gave me a lesson in how to get it right. I think I must be good for the self-esteem of children because I actually do have problems with things like that although for this particular cape I just hadn’t paid much attention to the fact that of course the batman side must be the vampire one. Silly adults.

It was fun enough to forget everything else. I don’t have a lot of energy. When you don’t remember to eat, or take your thyroid medication or much else and spend too much time sleeping at times and not enough at others well you get run down. Still I managed to hunt the kids as a vampire for a reasonable amount of time until allowing myself to be slain by the youngest so I could go back to the laundry.

The kids suspected a trick. I kept saying, “I am just a normal human doing my laundry,” as they lurked so I had to throw my arms up to a vampire pose and bare my teeth from time to time to get them scrambling. I don’t single task well right now so this child generated multitasking was enjoyable. I felt almost competent.

You shouldn’t feel refreshed after a day of endless loads of laundry and keeping up with high energy kids but I did. Even before we got to the Shabbat part of the day. Earlier in the day when the house had contained a more manageable single child who had been recently fed and was thus content we had talked a bit about the challenges of Shabbat for her. She was torn between her desire to have everything Shabbat ready and the fact that the kids pretty well undid everything as fast as things could be cleaned. She asked if things looked better than when I arrived at one point and the truth was really they looked different but that didn’t matter. I couldn’t remember when the actual candle-lighting time was even though I stick it on facebook for those who like to do things by the book. Shabbat is much like any other thing you think you feel like you don’t have the time to get ready for in that it still happens and sure enough the candles did get lit. Food was on the table and we ate.

When the eldest found out his mother was basically sneaking out to shul when she was honest that she wasn’t just dropping me off he wanted to come. He loves services but hadn’t slept well and we don’t finish until close to 9:30 so it’s not exactly kid friendly. I joked that she should keep this up and then he would rebel when he was old enough by always going to shul.

Services were much like always and not like always. I didn’t get to sit in my chair. I suspect there may have been some concern when I didn’t get there before things started as the importance of being in my chair means being early is practical. There had been some discussion between my friend and I about the temptation to just hang out with my dog and not go but I knew that actual worry would occur if I skipped entirely. We arrived half an hour after it started but we were not the last to arrive which is typical for our congregation but not so much for me. I must have been oddly healed just by the rambunctious company of the children as not being in my chair was not as distressing as it can be sometimes. There have been times when I go to great lengths to be in my chair.

There were several not so regulars at services tonight which I also sometimes consider distressing but I coped with that as well. People talk about inclusion a lot but they don’t tend to think about how the things you can’t control impact some people in your congregation. Everyone is trained not to mess with my blue cup by now but of course we can’t ensure that everyone is always there who my brain has decided is always there and that no one new come and so on. I know it’s not even healthy or rational to want to control that but my reaction to those human changes fluctuates. They are things I cope or don’t cope with and oddly enough after what should have been a day one would expect to leave me frazzled and frayed and clinging desperately to both my chair and my blue cup I was fine.

This was my second time being able to say the Mourner’s Kaddish among my friends so it should be easier and in some ways it was. When we got to the mediation we say before and I got teary. Hands reached out from both sides just as a matter of course. A year ago this sort of contact would have been difficult for me but now it was comforting.

It was hard when it was all done to accept the condolences of people who had been travelling the previous weeks. I somehow keep expecting this whole mourning thing to be tidier than it is. People keep telling me it won’t be, especially for a mother but I can’t stop wishing it was quite so tidily contained as the structure of the year of mourning suggests.

I’m very tired now of course but mentally feel better than I have all week. That’s somewhat normal for Shabbat but I suspect the invigorating effect of child’s play helped a lot as well.

Part of tonight’s service the service leader talked about what Reform Jews believe. It came up in contrast to the very precise rules and directions in the Torah portions this week. Rational is always part of the definition when reform Jews define themselves I’ve noticed, and I always considered myself rational and still do. I know a lot of atheists who by the very act of my engaging in any organized religion have now written me off as irrational but there are not many people as rational and logical as I am day to day.

You may protest well there is that notion you own chairs that are essentially public etc… but my preference for things to be the same is something I have to put up with while getting a similar scolding from my brain. Still until 15 months ago I only had believed in one miracle. One single time where something happened that I could prove fell outside the laws of physics. Perhaps the easiest kind of miracle to believe in I guess where you can do the math and say nope a falling body of your mass shouldn’t be able to wind up in a concave indentation in the mountain on top of the glacier I fell off of. I had like a moron reached for a can once we were safely at the top and unhooked from each other. I had no time to react in my fall and considerable time to lie there stunned and listen to my team speculate on which blobs and bits might be my body before I could rouse myself to yell I was in fact alive.

The miracles that are hard to even recognize though are the ones like today. How is a day filled with children and laundry and a rush to services in anyway miraculous? We could miss the miracle in there if we didn’t recognize that the deeds that sustain us against all odds may be dressed up as the totally mundane.

I have thought a lot about the fact that having spent the better part of a decade, after realizing I just could no longer try to worship Adonai in an Anglican setting, and getting up the courage to actually go to a service and join a congregation, I did so at a time when I was actually doing very well for me. Without that sudden burst of courage that got me across the threshold of the Jewish Community Centre I would have not had my rather big gang of people to see me through the worst of my health crisis. I would not have the fairly steady supply of support and encouragement both practical and emotional. I’m alive due to a burst of courage that experience has told me really couldn’t have come solely from within.

I had previously often referred to myself as a hermit but our congregation doesn’t believe in hermits I guess. While I was still in my pre-crisis mode brought on by my move I had more social invitations than in probably the entire prior 20 years and had started to do more than just survive them ,which is always the baseline expectation I had to go into them with, but to enjoy them. Call it a sudden, improbable social growth spurt if you must but it was a miracle.

Part of our belief is that we are partners with G-d in the repair of the world and as strange as it would be to describe a day spent doing many loads of laundry and being bossed around by children as miraculous I am in better state of repair now than I went into the day in. I don’t know about the world but as I am part of the world thus far my repair has to count for something I suppose.

Through this long ordeal there have always been these perfectly normal seeming things that are not so normal for me. Long ago most of the friends I had close to my age died or moved away. So even spending the day in the company of someone close to my age was not typical for me. I couldn’t imagine making friends and wasn’t even convinced new ones were not more trouble than they were worth. When you have serious social anxiety and social skills issues you can of course rationalize and probably have to to some degree, why you don’t try harder.

This was just a woman trying to be kind and useful in light of the fact my mom had died and I was struggling. But there is no just for me in that sentence. The ordinary parts of life have been the most elusive for me. I choose to see the hand of G-d in that I somehow do feel better. People inclined to be be blind to the everyday miracles might just say well this person was just filling a community norm. It’s right there in black and white to comfort the mourner.

I always prided myself in not being all what I phrased “hippy-dippy west-coast” like inclined to see the holy in everything and in the past 15 months I have realized how very wrong I was. I remember being really frustrated less than a year ago at the ingratitude of the people during the Exodus. I protested that they had lived in the time when miracles were the most obvious and they were getting direction straight from G-d and yet they complained about the food and so on. It drove me a little crazy really as I really wanted that very explicit direction and while some of that was coming more from my depression and my autism another big part was still that I was failing to see the less obvious miracles and thus be appropriately grateful for them.

Bread isn’t going to rain from heaven but the oneg might keep getting suspiciously large so that there are enough left overs to keep you going for a few days when living on just a disability pension while having to replace your clothes and so on is making life a little more stressful.

G-d isn’t going to put up a sign that says go here now and do exactly this it seems yet I can’t deny that as the only place my courage could have come from as far as even meeting the people who would become more than my congregation but also many friends. I had sat and prayed and studied and known where to go for ages and had never, not once, been able to actually get myself there. I’d even wept over my failure to do so. It had to happen that I managed when I did or I would not have survived I am certain but at the time while being shocked and amazed by finally getting there I didn’t really properly attribute it. I didn’t know what was coming but I do choose to think G-d did.

There are all sorts of theological debates that rage about whether as a group, we even believe in an interventionist G-d at this point. I do. I don’t believe in one who cares who wins the hockey game, or one who necessarily mucks around constantly in human affairs. One could get mad I suppose if one thought G-d was like that as I could choose to think well instead of providing this sudden burst of social courage, that ultimately provided me with the community I needed to get through my crisis wouldn’t it have been simpler just to skip the crisis?

I’m tired and worn out and far from well and the outcome of said crisis since new ones keep coming up is far from certain. I should probably have a strong preference for a G-d who just lightened up a bit on the amount of horrible things that happened. I haven’t decided how much G-d even does choose to  control these days or what governs the why and the when. I suppose I will never know so the best I can do is come up with a position that seems most likely one day. A position probably that will keep changing. I do know on our end we have to actually be open to letting G-d do what he can and being grateful for what he has done, which we cannot do if we fail to recognize His hand in the totally mundane yet life sustaining aspects of our life.

All my life I have tried to do what I thought G-d wanted of me but I think I often failed to let G-d help me because those angels in human form have been so hard for me to cope with. I’ve been insufficiently grateful during all those years when I saw myself as too rational and above seeing the miracles in the entirely mundane. We don’t know how things will end. I guess we never do but however things end here there will have been growth. Painful, scary, perilous growth which still has to be better than stagnation. Even for a person with a very strong preference for things staying the same.

Just a Dog

by

During the days after finding out about my mother’s death and actually being able to get to my family I had one source of comfort. The same source of comfort and support that can nearly always be found within a few centimetres of me: my dog, Shadow.

Years ago when I was still in university and doing very well with the academic part but having some anxiety during the busy time between classes my doctor wanted to get me an actual Autism Dog. The notion of such a thing was still new to him and he thought it would be enourmously beneficial and given I don’t really react typically to any medication but do love animals it seemed logical to him.

I was still in my phase of if I try hard enough I can be normal though or at least so closely approximate normal – especially at school, that I wasn’t keen. I did desperately want a dog and didn’t live in a place where I could have one for several more years but between wanting to look normal and thinking that for me any dog would likely do whereas for the types of kids (and they were always kids) being featured in stories about them they did indeed need a highly trained dog so it could go to school and so on.

It would be years before I got a dog. I was never entirely pet-less even if my lease said I was. I had gerbils, and a mouse and when I moved somewhere where I could have a dog but hadn’t accumulated the money for a dog, rats. I wanted to be sure when I finally got a dog I could pay for emergency expenses so long after I could afford to either buy or adopt a dog I was still saving.

Eventually I got a dog. A friend in Alberta, I had met on a channel for support for autism (primarily parents on that channel) found one in the paper and I had a sleepover when I went to visit my family and the dog clearly chose me. She was a good dog but we had been lied to about some of her life history it seems and there were numerous health issues. She was however so devoted to me I often worried about the next dog. How would the next dog ever compare?

The impact of that first dog was dramatic and immediate though. Whereas before I was often hospitalized for depressions that the powers that be had deemed untreatable due to my autism, and actually offered a cingulotomy as my only hope (a cingulotomy in case people wonder is in some ways more horrifying than a lobotomy). Post dog I was never hospitalized again for that. (Well until my no good. very bad year)  There may be a few contaminating factors in the data there but the dog played a huge role without a doubt.

When my dog, Tiny was her name, died I knew I could not be without a dog. I was torn between feeling there was an appropriate mourning period where a new puppy might feel like a replacement and the cold, hard knowledge that without a dog my life would head steeply downhill. I could feel it heading that way when in my pain of losing her I had no dog to reach for.

Slightly less than a month after Tiny died I got Shadow. Not wanting to be saddled with an unknown history I unapologetically got a puppy. Countless semi-anonymous people felt they could take me to task on getting a puppy when so many dogs are abandoned but I said that after having gone through some avoidable things with Tiny I wanted any errors made with my new dog to be created by me, and known by me. So if he didn’t get care he should have had, or wound up with severe separation anxiety or whatever those would be problems that had their origin in my care of him and I would then live with them. Sorry any unmet rescue dogs I never considered but this was my health at stake which I had to place at least equal to yours I am afraid, and so a brand, spanking new puppy, with a nice health record of both him and his parents it was. It wasn’t the politically correct thing I suppose but I am seldom in danger of doing that anyway.

Shadow’s name is a source of embarrassment to me. I had had gerbils named after mythical figures and rats named after physicists. A teeny, tiny entirely pathetic runt of a mouse I bought during a moment of extreme crisis (my suicide prevention mouse) I had dubbed Sergei Brun Mussen Von Federovsky in homage both to hockey and a linguistic game my maternal grandfather used to play.

With Tiny I had an excuse. She came with a name and was old enough a change would be hard. I would inevitably on being asked her name follow up with the fact I didn’t name her. I did name Shadow.

Oh how I didn’t want his name to be Shadow. He’s black of course although he would be no less Shadow like in another colour. It’s the 6th most popular dog’s name in our municipality among registered dogs and indeed there were no less than 4 on our block (granted it was a large block but still…) He was simply unquestionably my Shadow from the first moment.

I didn’t go to get him the day I wound up with him. I had my eye on a female in another litter. My father had told me that females always make better pets and that combined with alert and active dogs were probably smarter was about all the information I made my decision with in the end. I had read some stuff on the web but it didn’t differentiate that much from what my father said, so it seemed like a female it would be.

My dear friend, Jim, who has since died drove me with his wife. His wife, Shirley had been against my getting a dog in the first place. Atypically for her quite verbally against it as her reasoning was I could barely look after myself how could I look after a dog. She admitted she had been wrong within a week of my getting Tiny as she happened to drive by me walking Tiny and had never seen me look so happy in the entire time she had known me. A convert to the notion that a dog was necessary she was keen to be a part of the process.

I noticed Shadow immediately. Of the puppies only he was at all alert. It could be the rest were sleepy because they had just eaten or whatever but Shadow watched my every move. As I dutifully studied the dog I had intended to purchase my eyes kept going back to him. I explained my dilemma to Jim and Shirley but they had not been what you call dog people and had no advice beyond thinking it was me who had to live with the decision so I had to make it.

I asked to spend some time with Shadow thinking I could get him out of my system, after finding no one had expressed any intent to buy him. His sister’s had been hotter commodities and although all but one was still there they were all spoken for. (Maybe everyone had fathers who taught them that a female makes a better pet) Not that his sisters were at all tempting. They were as sleepy and as disinterested in me as my intended dog and her litter-mates.

I took Shadow out of eyesight of the other dogs which is ridiculous as the puppy I had come in for couldn’t know the grand betrayal in the making. I held him. I sensed my plan to get him out of my system or to discover something disappointing about him was not going to work. I set him down and he was adorable as he promptly scrambled to try to position himself on my shoe. I thought, it can’t be he actually knows how this works and if I am able to walk away from him he will never see me and I wasn’t vain enough really to think in the grand scheme of things that should matter too much but to Shadow it seemed to.

The inevitable followed of course. It feels odd to me to buy a dog as I don’t look at myself as owning a dog but being in a partnership. (Shadow has written somewhat extensively on this in his own blog – okay he gets some help with the typing and translating from dog but still http://www.dogster.com/dogs/914607) He was paid for since my feelings about ownership don’t enter into the need for a transaction. We went and got some things that would be  uniquely his and not passed down from Tiny and then took him home.

I had never had a puppy of my own to train. We had dogs always growing up but my father looked after that and the last dog that had been more mine than the family dog was one that I had walked after school for her whole life, as her people were in busy professions but came to me fully trained. Even overly trained for the life she wound up having. But Shadow and I both proved pretty trainable.

The first night he was home I slept with him in my hand. He wanted to be with me and was having none of this crate business and even though I had read umpteen books on why crate training is the greatest thing since… well who knows what but I am a single human. There is no greater feeling in the world than a dog snuggled by your side. (Or in Shadow’s case often on top of my bladder but still somehow that works out) I was terrified I would crush him, but clearly couldn’t put him down so I slept in the most awkward position of all time- my hand holding him but stretched what I judged to be a safe distance from my huge self. I woke to find him on my heart as I always roll onto my back at some point and that was his place after that while he was small.

Somewhere along the line the more reluctant members of my family came to accept that I actually needed a dog with me had. Even my father who sometimes had tried to convince someone to convince me to leave my dog behind gave in by the time Shadow came around. He had a cat he loves and the perception of the cat being upset about the dog is a little warped by that love. Their first time together after that cat had drawn quite copious amounts of blood from my then 3 and a half month old puppy it took a feat of extreme will not to explode at all the expressions of sympathy for the cat. Anyway said cat can take care of himself and usually when I visit without the chaos of the rest of the clan, the cat is over it fairly fast. The cat hates me with a passion as I have never been found without a dog with me but we reached a state of detente.

This year in the eyes of some Shadow got promoted. Getting him certified as a service dog had been something my new psychiatrist had been keen on. I could see the practicality of it as we were having some problems finding housing but I had qualms about some of the requirements. Again Shadow has covered those in his own blog so I won’t repeat myself – or rather him.

That he is a support animal is without question. Despite 2012 being the year when my record absence from hospital was broken as I tell him what went on was beyond the ability of any dog to fix. I couldn’t cope in a completely predictable autistic way with the major change of having to leave my home of many years. The degree to which I couldn’t cope was a surprise and the fact I am still not over it also a surprise but given the number of very learned humans who also have not been much help in this time my inability to cope was not his fault.

He isn’t officially certified as anything yet beyond being certified as an emotional support dog on one airline. There has been some feet dragging on my part as a service dog is the more logical designation for my conditions and would grant him more privileges typically (although laws in our province are almost non-existent) but I have some ethical qualms with some of what would be required of him. Ultimately I suspect we will still go that route as I have been told that they do take the disability into account so the area that caused me the most concern was the requirement that a dog not greet someone without permission as it’s useful for me that he does and his friendliness is a fundamental part of him. One doesn’t tamper with the fundamental parts of a being in my ethical system so training him to seek permission from a human who would be slow to realize there was even someone who needed greeting and the attendant lack of social interaction that would go with that seemed unthinkably cruel to him.

Shadow isn’t just friendly. He is comically friendly. When he was a puppy and we were in Calgary for a funeral, a business man in full oil patch attire drove past us, backed up, parked his car and sat down in his very nice suit and simply played with him. He said almost nothing to me beyond enquiring about the breed so I have never been able to come up with a reason why that happened. Something more than the extreme cuteness of my dog surely but I can only wonder. Some days I suppose one just needs a dog urgently enough to break with societal norms in a city full of them. Who knows?  A commuting bicyclist did the same here although that’s slightly more typical for what the rest of Canada calls “la la land”, than Alberta.

When my friend had found Tiny for me she expressed a hope that having a dog  would make me talk to people. Tiny though was content with me as her universe so I was able to walk her at 1 am with no visible harm to her. I knew immediately that Shadow would need to be walked in daylight hours when there were people about and this was no small thing for me. I often find the daytime too bright, we lived in an area near a park so thankfully it was seldom also too noisy but if I am not doing well daytime is overwhelming. Add in the fact that suddenly neighbours I had had for ten years without them noticing me were it seemed, pouring out of their houses to say hi to Shadow it was all a bit hard. Hard but no doubt good for me.

I am pragmatic. I really struggled with those early months of his intense popularity in our area. I had read though that in a natural disaster people who know their neighbours have higher survival rates and better outcomes and as insane as that may seem as a way to rationalize what I went through to have Shadow’s social needs met at the end of every walk when I slumped at my computer to do comforting computer stuff that’s what I told myself as I started at my stockpile of earthquake water.

When I was in hospital my nephew would bring Shadow in. It was actually the nurses there who were among the most vocal that he should be certified as they had just had a dog stay for some time and felt it benefited everyone. I certainly missed him mightily as it was our only separation of longer than 2 days. I worried he would be a piner like Tiny and not eat but he was apparently loving the wild, student lifestyle with my nephew and having the attention of who knows how many university students who had left some beloved dog at home heaped on him but still I know I am number one in his brain.

In these days of intense grief, Shadow has upped his protectiveness to extreme levels. He had his bed beside my desk and would sometimes drag it even further to be warmer or less likely to have paper dropped on him. His bed wound up fully under my desk almost immediately after hearing the still unfathomable news.  I didn’t even see him move it just noticed that when I sat down the sensation of dog head landing on my foot was now part of the process.

He came with me, “home” to see my mother’s cold, cold body. Well he couldn’t go to the actual funeral home but was on her bed waiting for me when I returned. The airline we fly with had just changed their policy about service and support dogs so years of paying for him to fly were going to end. He’s more essential than anything else that travels with me and now they were apparently willing to accept the word of a person qualified to say I had a DSM diagnosis (heck I collect them so that’s no problem) . For their purposes he needed nothing else. The only hitch was they needed it 48 hours in advance. Which was of course impossible. They opted to waive his fare going out as a pet and have him come home as an emotional support dog. That would be the promotion some people refer to.

Only of course he hasn’t been promoted. Nothing at all has changed about my dear Shadow. There is no rank higher than my dog in our shared universe. That society might acknowledge his importance to my health and well-being is great but that’s society. It’s practical to jump through their hoops as on a small pension and the little extra I am able to earn legally because  it’s not easy to shell out for his fare and so on but he’s doing what he has done since he was 8 weeks old.

He’s very good at it. Back before the news while he still regarded me as needing more watching than I had in some time (it has as I say been a very bad 15 months) he was willing to have his eyes off me for a few minutes at a time. We have a very small space now and he must have realized I can’t actually escape without him noticing as his practices have changed a bit.

Right now he is back to the comical levels of surveillance he had when he was a puppy. We had a walk in shower at out last place. So reluctant was he to have me out of his sight back then that he would follow me into the shower despite it only taking a second at that size for him to be soaking wet. He would eventually settle for sticking his head around the curtain and then for lying down and complaining loudly about my being in such a dangerous device but that was slow progress.

We have a bathtub here. It’s a deep one and Shadow is not a fan as if I slide all the way down to soak my aching joints I am not visible at all from where he sits. Up come his paws and head on the ledge of the tub. I know it’s anthropomorphizing him to imagine he looks a little annoyed at having to check but I do imagine that. Today he seemed to feel the need to check so often I eventually felt guilty and climbed from the tub far sooner than my arthritis wanted me to. Still he is right to suspect in my pain and misery I need close watching. Nothing would actually happen in the tub but he can, I know, feel the pain and it’s that pain he is checking on. He must also feel the slight lifting of the pain as his paws and head come into view as annoyed as I imagine he looks it is also a bit comical and does give some relief.

I don’t really understand non-dog people because the love of a dog is like nothing else on earth. I can’t quite wrap my head around not knowing that or at least not taking it on faith enough to try it.

Back when I had Tiny who was so devoted to me people would marvel I would dismiss her devotion a bit as being a product of what I increasingly suspected was a more troubled background than I had been told. I knew she loved me but I thought that love was artificially enhanced in contrast to what she had known before. That I was good to her there is no doubt but still I tended to think I was just a huge improvement so her dedication to me made a sort of sense not due to my own qualities but in contrast to what she had known.

Shadow has changed my mind. When people remark on his attentiveness I tell them that I inspire devotion in dogs. Dogs by nature want to be devoted but mine seem to go that extra mile so people do remark. I have realized it isn’t every human or indeed the majority of humans who thinks of their relationship with their dog as a partnership to the extent I do. I’ve joked if I believed in reincarnation and aside from the practical limitation I would come back as my dog.

When I first got Tiny and would describe myself as Tiny’s human when booking an appointment people would sometimes laugh. The years went on and some municipalities started to adapt language for dog by-laws that was free of the term owner. I had nothing whatsoever to do with that but was simply using language the way I always do. That is I use the words that are true. Owner is not a true word for the type of relationship I have with the dogs I have loved.

While one can buy a dog and due to a dog’s forgiving nature even the most horrible human can possess it’s heart to a degree that makes me want to weep at times, I don’t believe you can own one. If you are lucky you can have one that recognizes that you are the human he or she was meant to have and tried as hard as Shadow did to prove it.

My heart is as fully his as his is mine. Since I am not being blessed with the ignorance of his mortality that he is perhaps more so, as having lost dogs it’s hard not to look at even a young one without looking ahead to that terrible day.

Still in the moment we have each other and much of the time that is all we are certain of. It seems unlikely that I will ever have the kind of relationships with humans I sometimes long for but don’t mistake this love of and by a dog as a poor substitute for that. It’s a deep and loving bond free from the complications and hurts that humans sometimes inflict on one another. I am not qualified to say it is a better relationship but I do know it is not inherently a poorer one.

Like the husband I will likely never have he is not perfect. He’s part Pekingese so he snores like a 400 pound truck-driver sometimes with that squashed in nose of his. There’s that aforementioned tendency to find the most comfortable part of my body to creep up onto in the night to be my bladder and I left out the part (although again he discusses it in his own blog) where he has a war with my reading material.

Right now I can’t really look after myself. I am losing alarming amounts of weight because of that and all sorts of regarded as essential things are not happening. Shadow however is looked after. On my worst days he has to advocate for himself a bit and I feel terrible guilt if his water dish is empty but so central is he to my universe that his care comes above my own and I do think that love has been defined that way by more than one poet or sage throughout time.

I titled this blog Just a Dog because it’s a phrase I hear so often, often preceded by “Don’t be silly,”. I feel sorry for people who can say, “just a dog”. There is no just about it. To not have been loved by a dog enough to know that just and dog don’t go together as it does them dishonour to so diminish their importance is a very sad thing. A sadder thing I think, (although the world again views this differently) than my condition. It probably breaks some fundamental neurotypical societal rule for me to feel sorry for those inclined to buy puzzle ribbons and turn facebook blue and all that meaningless politically correct “see how much I care about autism” nonsense and still say just and dog in the same sentence. So sorry any regular, well-meaning but insight impaired neurotypicals that read this. I mean no offense. This is just my truth about my dog and why he is neither promotable nor diminishable by any adjective.

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A Day of Grief, Rest and Worms

by

It rained today. It’s the first day of March on the Wet Coast of Canada so that’s almost a given. It was also a Friday which meant it was the first time I was able to be with my temple congregation as I mourned my mother. I had longed for today since getting home late Sunday, well really since learning the news.

That I am not doing well by any measure seems clears enough. I weighed myself today and found another 8 kilograms had vanished from my body, claimed by the forces that make texture in food intolerable at times like this and remembering to eat what I whip up that I think I can tolerate a long shot.

I tried to have a normal day other than not working. I went to my country band practice even though this week it seems habitual for me to wake after only a few hours sleep and so I found myself just starting to fall asleep again when it was time to get ready. It took me in this scattered state of pretty close to no executive function over an hour to locate my keys. I never did locate my music. When I got home I saw it was just where it should be even though I had a clear impression of looking right there many times earlier.

So I did my best to have the life I usually live or the recreational bits anyway which is what my friends have said to do. To ease back into the more arduous things as I am ready, but not to be a hermit. So I went to my rehearsal on Thursday and the one today. At one point I nearly burst into tears on Thursday over the fact that the recordings I had asked our sound technician to make of our last concert would never be heard by my mother.

I got myself to temple stopping at the library, despite not having a hope in heck of finding my library card. They know me there and usually you get two free borrows a year without one but since it was also Shabbat I didn’t have anything but my bus pass with me. I leave my wallet behind habitually and as stressed as I was words weren’t going to come to say as much but somehow the book I waited for 5 months got checked out to me all the same. The clerk said that for the record a bus pass does not work it should be something like a care card if I don’t have my library card. That got words out of me as I protested they are both issued by the government and the bus pass actually has more information on it that she is actually able to read. She demagnetized my book with more of a thud than seemed necessary and I escaped.

Our congregation meets at the Jewish Community Centre so every week there is a the usual hubbub of people getting ready on Jewish time. I have mused about how as a group, such unpunctual people even made it out of the dessert in 40 years but that has not sped up the pace any. So it was familiar. We donned our kippot and grabbed our prayer books and I headed to “my spot”. Then I realized there would be a bottleneck of people anxious to hug me so I left those behind and went to be comforted a bit. I wouldn’t have guessed 18 months ago that I would go out of my way to be hugged by people but the embraces that used to be something to endure were healing tonight.

The service was familiar of course but while familiar it is also different each time as different people read or give stress to different things and different meditations are chosen. I did not cry until the meditation before the Mourner’s Kaddish. Then I couldn’t stop for a bit. During the familiar rhythms of it I did stop until the last few words. But I was among friends. An arm planted firmly on me on both sides and so I suppose it served it’s centuries old function.

We gathered for the oneg after (-to delight ; so a bit more elaborate than a coffee hour). Our congregation usually spends twice as much time in this phase of things than the service which is not to say we skimp on the service bit but the social part takes a long, long, time. When I first started going it was so hard for me that they were so social. The eating and drinking together had always been something to flee quickly and now there was no fleeing without feeling like somehow you were failing to fully appreciate and take delight in Shabbat so I learned to enjoy that. Tonight especially when for most of the week I had been holed up in my place trying to sleep away my pain, or when I had ventured among humans been in more structured situations it was good to just sit and drink tea out of my blue cup, and eat what had been brought.

It’s important for me to eat when I am with people as I am so horrible at it the rest of the time so did. I brought my baby book which doesn’t go much past the age of 3 for me but since no one had ever seen my mom I brought it in case I had nothing to say or too much to say. Pictures it seemed would help.

My dog always gets a walk on Shabbat. I am Reform so no fear that I may inadvertently tame a wild beast keeps us from that. It is one of our rituals to walk with him and enjoy the peace and outdoors. In the summer before services often, as the days get so long that it feels Shabbat will never arrive but at this time of year afterwards. I think about and to marvel in whatever has come up or the portion for the week or whatever comes to mind, usually while simultaneously marvelling at the night sky when it is visible.

Usually I look up at the lights and think myriad thoughts and one would expect my thoughts to be on my mother tonight and they had been until then but as I said at the outset it was raining and had rained with only short respite for days. So my mission was clear. There were worms that needed saving.

When it rains for days on end hundreds of worms wash down onto the sidewalk. Some misguided worms crawl towards the street where if they are unlucky they will fall off the curb and be swept down the street in a torrent of water. Others will simply wind up in a puddle and meet a more visibly gruesome death as their body swells with more water than they can handle. Neither are ever acceptable outcomes to me.

People might be tempted to think I went at my worm rescue with more intensity than normal tonight because I couldn’t save my mother but that worms will be rescued is a given for me. There were rather more in need of rescue tonight and I had to give it up at the point where my dog became so wet I feared for his health but I relocated the worms who had only strayed near danger back onto nearby lawns. The ones who had nearly perished though I regarded as likely to do something stupid in worm terms if left too their own devices so into my pocket they went. They were in need of relocation to the worm sanctuary outside my door. Far from a street or gutter and where no one walks.

I’ve sometimes even wondered about the ethics or rescuing stupid worms. By actually placing the worms most likely to have come near death in the safest situation ultimately am I tampering with their gene pool? Am I breeding for stupidity? Should I, a mere mortal, even intervene? Yes, I can get more mileage out of the art of saving worms than some might imagine.

I used to anguish about this separation of the worms I viewed as not trustworthy enough to be left near the scene of their near demise (IE most likely to just resume crawling towards the sidewalk) . I had a nice backyard where I did a bit of gardening until this past year. When I did worm rescue and brought back some to there I would wonder if worms got lonely for their close kin or not. On a rational level I know enough about their nervous systems to dismiss this as silly but somehow just as some types of people might wonder if they are hurting a rock, despite being very logical and rational I always feel like I am weighing the likely sure death of the worm over it’s separation from the familiar. I of course am not one to underestimate how catastrophic separation from the familiar is.

Anyway into my pocket went the worms I had actually plucked from near death. Two so soggy I wasn’t entirely sure they would ever wriggle again (they did) one that had dangled right on the edge of the curb as we walked by and one I had plucked out of rivulet of water as it swept towards certain death. The worms are oblivious to all this I suppose. If I wanted to make this in anyway about my life and not just my habitual rescue of worms who will be stepped on, swept away or drown I might be tempted to think that I went at it this intensely because almost nothing this year has been in my control.

I couldn’t stop myself from losing my place that I lived, my health, more of my health, or my mom but dangnabbit that improbably long worm dangling from the curb was not going to get swept into the sewer system. I was tempted to think well it’s not an exercise of control over the fate of some barely sentiment being in a merciless universe because I always do exactly this but then I thought about it.

A lot of my life feels not unlike that of a worm in a long stormy stretch. The worm is battered by more rain than it can handle in a stormy stretch, swept from the familiar into the possibly dangerous and filled to a point of near death with water. The past 15 months it feels like the universe has rained down one horrible happening after another on me. There have been a few good but very few good. Like the worm that never gets to dry out enough to be out of danger, I never get a stable stretch enough to even begin to brace for the next deluge.

So then I have to wonder is this worm rescue I diligently perform even in more stable times still my attempt to control some beings fate all the same. It may be just an extension of other familiar repetitive rites made to comfort and create the sense of structure just in a more eleborate guise. Who knows? I don’t. Or maybe I do and it doesn’t matter.

I’m drained and sad, and have a hole in my life that won’t even begin to mend any time soon so if all I know at the end of the day is that I was finally able to mourn with my closest friends, and that approximately 80 worms were saved from possible squishing and drowning and about half a dozen from certain death isn’t that at the end of the day about all I could hope for from a day like today?

The day we flew home when my dog was so distraught by any separation from me I kept telling him tomorrow would be better but in fact the tomorrows of this week have not been. Not yet. We head into this tomorrow, a day that is always a day of rest so not as atypical from all the other days of rest we have had this week only able to claim some small victory over the elements that sought to destroy some worms. A very small victory except we are at least heading into another day. That hasn’t always been a given in all of the chaos and pain of the past 15 months so while some people no doubt would rate both the religious aspects of my life and the worm rescuing ones about equally pointless to me they have a point.

I don’t normally even try to defend the religious parts as they don’t need defending. The worm rescue parts well it’s something that some people knew about but most didn’t but it is how I spent the last part of a very long day, in a very long week, in a very long year and so on.

Anyone hoping for something more moving, or illuminating as far as either autism or grief goes is probably feeling a bit robbed and it’s not like the worms will be singing my praises as they dry out, and burrow into new soil but that was my today. It could have been much worse – although not much wetter.

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