Monthly Archives: October 2013

The Myth of Recovery,

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I read a article that on the surface seemed to some in the autism community at least more positive which is a bit of a sad commentary on what we have become used to. The article is here: http://seattlemag.com/article/autism-identity-or-disability?page=0%2C1 . It contains perhaps the most damaging notion for both adults and children on the autistic spectrum. That recovery is possible. They often put it another way that we can be recovered like some junked guitar found in the dump I guess. I don’t know.

I understand people need hope. Even if your child falls on the end of the spectrum where people mainly just think they are extremely strange I know a parent struggles. Nature conditions parents I think to have dreams for their children and then a doctor comes along and puts a label or two or three on the carrier of those dreams and well I can only imagine it must be very hard.

A good parent learns I suppose to be open to dreaming a new dream. Altering it often. Ideally realizing as pretty well every parent no matter what kind of child you get that this child is not on the planet to do the things you didn’t get to, go that one step further than anyone n the family has before or demonstrate they too have a cherished family gift for whatever.

I will never know what it is to be a parent, let alone a parent with a child with an Autistic Spectrum Disorder. I do meet a lot both online and in person. The internet being a bit of a mixed blessing for a hermit.

Recovery is perhaps the most damaging to people who occupy they part of the spectrum I do. We have technically competencies in language and a normal or insanely high IQ. I have a degree which was often on the wish list of parents who would come into a an autism chat many years ago.

By the things focused in in that article I have recovered and this was indeed the notion of my youth (which is holding up services a bit as no one with an adequate grasp of the DSM seems to be employed by the agency making the decision) You finished speech therapy and someone, somewhere declared your autism residual and your parents had already been cautioned that mentioning the word would cause backsliding so you spent time with this weird notion the word somehow applied to you but if you brought it up or heck even dared to read a book about it your parents would yell that you were not autistic. This always seemed odd to me as the only people I knew like me were in those books and I read the first one when I was 5. Protected then from being yelled at by the fear it would send me under a table or down to my crazy kart fro 2000 of so laps of the basement.

The hard truth of the matter is a child like I was may experience brief windows in time when what is expected of them seems bang on with what they can cope with. We may almost have passed for normal during the grades of 4 to 6 if I had not spent one of those years talking like a robot the entire time (which thankfully did not bring on the speech therapists again). Spending every academic subject in the library wasn’t helping but on the whole those years will count as the most normal seeming of my life I fear.

We had, , once the notion that I was probably mentally retarded had been shed, acquired a new and better identity. One that gave some leverage for me to be a little bit odd I suppose in the eyes of adults without questioning outright what was wrong with me. I settled into the life of the super gifted and talented as they would describe it when trying to have me moved to private school.

I can sees how much better this seemed. How in a family with a good history of denial it would be better to totally attach themselves to this. I was too gifted for the gifted education available was the claim so multiple attempts were made to have me shipped away and private citizens even made the occasional offer.

For my parents the period where my school district became very insistent about it was a hard one. They had moved me from a city I was comfortable with. Friends I had picked up during the glory years when I was away from class too much to seem too weird and who were thus inclined to be kind to me even though I wasn’t keeping up as we entered puberty. The last kindness I would have from a peer group was when one of my inner circle pulled me aside and insisted if I were to wear a yellow shirt to school the time had come to wear a bra.

After we moved if I try to think of it from my parents point of view they were very conflicted. They could see I was not able to make friends. That I withdrew to my room and seldom spoke about anything. My grades were excellent though and the school’s main concern was not that I fit in socially but they were ill equipped to educate me not because of my autism but because I had actually finished with the content by the third grade.

Many hushed discussions were had and many impractical solutions come up with as my parents still saw me as something that could be recovered. Heck they had been told I pretty well had. If it were not for those few clingy bits of autism they could glorify in having a child to intelligent to be educated anywhere within 600 kilometers of where they were.

I don’t know why my father always turned both people and school districts down. He was in the odd position of not having to fight that the laws about an appropriate eduction apply but rather people would come to him and he would say no. Did he suspect another change would undo me and in the absence of any family member to wonder how I was functioning I would slide all the way back into whatever it was they feared?

I was bullied brutally for many years but the yearbook evidence would suggest I had peers. Peers who were highly inclined to join in on the pack violence so it was a strange time for me. I placed myself in structured activities which sometimes worked and sometimes didn’t. A sports team can be a very brutal place even if you are good at the sport.

Army cadets was my salvation in a way I think. A youth program that told you what to wear, what to say and what to do. It has more of an academic component than it looks like from the outside so I did well in it. Progressed rapidly up the ranks which gave me greater control and information fast so I was not caught surprised by some thing I was expected to do. Within the context of cadets while undoubtedly still and outlier I had actual peers.

As you age and gain rank you take increasing responsibility for the operation of things so I actually achieved a great many things on the planning and organization still while still young which strike me as odd now having bottomed out of the tests that measure those things.

If one had viewed me when out with my Cadet Corps. You would have though I was an impressive teenager on he cusp of adulthood. If you stepped closer you may have had cause how I tactfully maintained a newly minted officers sense of control and dignity but spared my platoon a night march through a swamp. It is I am afraid a rather specific toolkit as far as diplomacy goes.

Not that I was always on the ball with that. When getting an award from our Colonel one day, he remarked I was female. I replied, “I am aware of that Sir.” I actually was not being sarcastic sadly but it could have been taken as such. What else was I suppose to say as that one had not come up.?

A few years later when I had an honour that would later be explained to me as being largely due to my height at a big event with Prince Philip well… History repeats itself. There were half a dozen people of my rank sent to get crowd control “volunteers” from the rest. At some point someone came out and said I would be in charge. I could see my training officer come towards me at that point but someone said something.

There were shouts of protest from those who felt they had seniority despite our rank but I had no clue either. Someone slipped up to me and said he knew but he wasn’t allowed to tell me. This indeed proved to be the case. I would learn after the fact that someone taller than a royal has to stand in this central spot. I would learn it after Prince Phillip came up to shake my hand and make small talk which protocol dictates is appropriate. No one had told me about this part in the program and as he approached I got nervous. The cadets in the UK were not accepting females then and who knows he may never have run into a female in this point position but he uttered the same words as our Colonel had years before. I could see a look of alarm cross the Colonel’s face but wasn’t sure why until my typical response had slipped out. The Prince did not seem to notice but several higher officers were either in the middle of trying not to sputter or trying not to laugh. He said a few more things and was gone thankfully. My training officer came over and explained what he had wanted to say beforehand. That this would happen because since any bullet fired from the crowd would have to go through me.

I was not impressed. I would have done the position having been told to with that knowledge and in Canada the odds of a bullet flying through the crowd are pretty narrow. The worst thing we had to deal with were the kindergarten teachers who resented that the kids could not simply sit in front of us but those were the orders we had.

There must be official pictures from that day somewhere although the Prince and Queen kept a pretty tough schedule back then. I would have looked like a teenager to take great pride in if you could not I suppose hear my replies. I can’t remember the rest of the conversation at all because I was a bit distracted by people turning various shades of red and purple.

Autism being a shameful word to utter my mother would not have said this was due to any intervention on her part of declare me recovered despite the stamp of residual in my chart. By then even a mother who deeply wanted a daughter like other daughters knew she didn’t have one and she was not one to focus on what I was good at as it was my social deficits that she was obsessed with.

In the post I made after her death I make it clear I love my mother. Those were words I could not have said with certainty up to a point. Certainly not then when shes may have longed to hear them in a way that wasn’t a synonym for hanging up the phone.

I spent my early years not looking like I would amount to much. I spent the later years having sometimes a conflict from appearance and reality but sometimes being in situations I was competent enough at to almost seem normal. I took comfort in the notion that I had read about a poet with a bad stint in the army during the worst of times as people did sometimes attach a just before my last name as if I was incapable of comprehending some of the things that went on that should not have .

Forever after I have lived not knowing how and how severely my autism would impact me. When you find some incorrect data in a coded study and get paid 300 dollars for something that took you less than a second that seemed nice but being dragged around the psychology department as “that student” not so much.

Depression would further complicate my life and like my arthritis it does not play well with my autism. They claim it make my depression untreatable so 4 times now they have concluded electricity might work better. This go around with doses of horse tranquilizer to boot.

I cannot as I type this cope with the sound and intensity of the world out there without help. It is too much for me. I have lived for 20 months in a state of disarray due to the simple act of having to move. Anyone temped to label me recovered when I was hitting milestones like a university degree may wonder what the heck happened but in truth back then university was my functional place. I knew how to be be a student well. Not the bits that included partying or even knowing where the party was but understanding what the professor wanted and getting those A’s that I could do.

Now my work is similar. If viewed just by my capacity to do my very flexible computer based work one would probably rate me fairly high. I don’t now why the ability to do that remains when everything else is gone but it seems to. I set rules as safeguards though about not working past certain hours and I made myself come off painkillers before I resumed as it is complex work sometimes.

My boss does know about my autism as does anyone I work closely with even though to date we have never met in person. It doesn’t matter for the work I do for him. It matters a bit more when I have to run a team as I can forget the nice words. I put them on a too do list actually to remember to find something people are doing well and make sure they know you noticed as my team are volunteers that is kind of important but I can’t be dishonest so I will never be the type to gush.

Still it seems a bit strange that a person who had no hope of getting her coat and phone back as it involved going out in day light (brighter and more crowded) makes the decisions I do.

The internet is a great gift to people on the spectrum. I think more so than any other group. Parents can chat with each other, autistic people can chat with each other. My facebook friend list is filling up with autistic people I have never met but they think enough like me to be less annoying than the contingent of people you have on there because you can’t say no

It can however be used to spread terrible things as a truth. As positive as the article seemed in many ways the truth is if you have autism you have it for your life. Some people seem lucky to me in that the things thy have learned seemed ta bit more static as in they can talk and that ability doesn’t tend to flee but I have to suspect they have their own challenges.

I cannot change my autism. Sometimes I hate it to be honest. That doesn’t mean I want it cured as it has formed me, any hypothetical cure would not change the structure of a brain well into adulthood. What gets removed in the process may be debated as well.

I am normally in a state of acceptance about it. I am honest about it to the people it will impact so it doesn’t have as much potential to blow up with everyone wondering why but the way I have been the past 20 months I described to my psychiatrist as much like living without skin. He is a very ethical man and he was concerned he was hurting more than helping and I had to say right now it all hurts. I can’t manage any of that and this is a record time of being in this state.

In some ways as no one is my parent my situation is not so different from a parent wondering will their child ever do this for the first time or again. I am my own parent in a sense. Only I can take hold of myself and try to convince myself the day will come again when you can go outside in the day without help, the day might come when you can go back to school. We are dreaming small dreams right now so settling for being able to walk the dog in the day seems sensible.

In an hour my ride will come to take me to my swing band. I am competent at swing. It took a long time but yep I can play swing in my sleep. It caused what I am told a never seen thumbs up to a percussionist at another band I agreed to help last night when I was feeling quite terrified overall. (They have a huge and important concert on Saturday) Yeah functioning as I am the wisdom of agreeing to be a ringer for a concert of this magnitude of importance seems a bit stupid in retrospect but oh well. It did give me a rare chance to have someone by positive about a skill I laboured at. I value my ability at drums over that on the computer or the languages too numerous to count now that I can read. I value it because it was hard and that could be something to tuck in the backs of people’s minds as they struggle to stay patient with the progress of the child. As they struggle to avoid the trap that thinking of them as cured will be and so it goes.

It’s not a journey any of us whether Spectrum or parent asked to be on but it is all we have. Like all lives it will I suppose be good and bad and comparing myself to others of my age brings no happiness. I am deeply spiritual and although it is a concept that upsets some, I choose to believe I am as G-d intended and oh I do get so mad at G-d at times. (Jews are allowed by definition more latitude in giving G-d heck in case anyone worries for my soul)

When all else has been gone my faith has remained. One might think as some upset people have mailed me that it is a cruel G-d who would make people that would have lives much harder than others and struggle so much and so often just to viewed as competent and at times even human. I do not think that. I do not make guesses as to why and I have yet to get an answer. Sometimes I hope the fact that I can express this is part of the why.

I make a suggestion to some previously unknown blogger and a problem is solved, I visit for a day with a boy with AS and he works out that autism is not terminal, I take a new child under my wing so someone is there to say what his parents cannot. I am like you. I know it is hard. You can still be what matters to you on this day so rest a bit and then come when you can. We will wait. You are important.

I almost cried when uttering the last words to the child of a friend the other day. I thought what a difference it would have made if anyone had been there to say things and to simply be leant upon during what seemed like a catastrophic time to him. The odds that someone would see it was not a big deal over nothing seemed slim and added to the shame. Shame nipped in the bud I hope at least that time before it bears fruit.

 

Skating all over the Spectrum.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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