Wednesday, November 1, 2017

Autistics Speaking Day

What is it like to me to be autistic?  Well, have you ever had writers block?  I mean those times when you sit staring at a piece of paper for ten minutes, an hour, or maybe even days knowing that you should have something to say.  Or maybe you even need to say something because it is a school assignment or a work evaluation and just nothing will come?  Maybe your earliest experiences with writing were attacked by a grammar Nazis who couldn’t tell the difference between cultivating the creative process and the sense of power it gave them to point out all your misplaced commas?  And after their loving attention, every stinking time you try to write it is as if your middle school English teacher is staring over your shoulder, telling you your formatting is wrong before you’ve even written a single word?

That is how I feel when I try to do “small talk.”  Like staring at a blank piece of paper that just won’t let itself be written.  When I do try to talk it often doesn’t go well.  I’ve probably been asked more than a thousand times if I could “say that again in English.”  It’s probably been more than a thousand times that people tell me “stop making me think.”  It has probably been more than a million times that people have told me to “stop using such big words.”  While there generally have always been some people who could accept the way I spoke without criticism, these were very common reactions and they even happened routinely within my own family.  While there are people who try to impress others by "talking smart" I am not one of them.  I can't turn it off.  Compared to a typical mind I tend to understand and describe the world in its “details” rather than in its “big picture.”  The literal meaning of words is just as obvious if not more obvious than the social meaning.  Connections between ideas that seem obvious to me are at times obscure to other people.  All of this spills over into how I speak.  To successfully talk with other people I often have to consciously “translate” my natural language into “normal people” language.  If I get excited by an interesting discussion I sometimes forget to “translate” and sometimes people stop being able to understand me at all.  It is easier for me to talk about specific ideas and concepts than it is to perform the “talk about nothing” social ritual that normally lubricates social interactions.  The larger the group of people, the harder it is for me to do small talk.  I also have very little feel for guessing in real time how people will react to the things that I say, often only realizing afterwards if something would be likely to come across wrong.

So what does it do to you to be different like that?  It makes you into the mostly silent kid who “talks like a professor.”  Most people are not ready to be friends with someone who has trouble doing small talk because small talk is the language they use to navigate the early stages of relationship.  If you don't do it, they might assume you don't want to have anything to do with them.  Even if they know that you are technically part of their social group, they have trouble viewing you as anything other than the "smart person" whom they only talk to if they want to know something.  I was lucky growing up to have a good friend who excelled at connecting me with larger social groups, so as a I child I was nowhere near as bad off as I might have been.  There is unfortunately a limit of what one person can do.  In many social contexts I became the lonely kid who is told over and over that if they don’t have friends it is their fault for not smiling enough.  That is about as useful as telling someone in a wheel chair that if they really wanted to be included in the party upstairs they’d just quit whining and walk up the stairs like everybody else.  It isn’t that I don’t want friends or that I don’t smile at people.  It isn’t that I don’t want to talk to people.  But even holding what to someone else seems a “normal” small talk conversation can be a good deal of work.  It can be a relief to hang out with people who are well educated enough that they’d never think to complain that talking to me makes them think too much.  Well educated people are also much more likely to enjoy talking about ideas (easy for me to do) rather than endlessly talking about nothing (very hard for me to do).  For all the honor students, graduate students, and college professors who might wonder why I hung around you so much, now you know why.  People who actively accept people who are different than them are also a joy.

I do have autistic traits other than difficulty socializing.  I have poor executive functioning skills, stims, sensory sensitivities, and obsessions.  For the most part, however, these don’t interfere with my life as much as the social anxiety and awkwardness.  My poor executive function, or inherent ability to organize myself to get things done, is no where near as bad as some people have.  My sensory abnormalities, which used to make warm water, beans, and sales tags attached to clothing unbearable, diminished in severity during adolescence.  My stims, including sequentially touching each finger to thumb or tapping my feet are noticeable to those who know me.  I can’t pretend these don’t impact me at all since I was once  told by a man that if I were to apply for a job from him he probably would not hire me because he thought my stims would be unsettling to customers.  However, in my daily life they don’t get in my way.  No one has ever made concerted effort to “cure” me of stimming, so unless I am in a job interview, interacting with police (who might think I look nervously guilty or on drugs), or doing public speaking I rarely feel insecure about stimming.  Other autistics aren’t so lucky, having had doctors and family go to great lengths to try to cure them of their stims to the point where they have debilitating anxiety just being in public for fear that someone might see them fidget.  My obsessions, which at times have made it difficult for me to talk about anything other than birds, telescopes, armadillos, or whatever idea had come to me recently, come with less frequency and intensity now.  Instead of hardly being able to talk about anything else, I now often find myself able to talk about other things if someone else starts the conversation.  If I am starting a conversation I might have trouble thinking of anything to say outside of my obsession.  If my particular interest at any given time is socially inappropriate for the situation, like say talking about exercise routine design with obese people for example, I generally stay silent.  Silence is easy, except for bit where you are automatically isolated from people who don’t accept companionship in silence.

It is often difficult to talk about how I am affected by being on the autism spectrum even when I am prepared to describe it eloquently.  Many people can accept it without difficulty, but it is common that some people just don’t want to believe that my life is in any ways substantially different from theirs.  When they see that  I obviously can socialize to some extent, they can’t accept that it might still be difficult in a meaningful way.  Jane Meyerding, writing in the anthology “Coming Out Asperger” (p. 254) describes the problem well:
The only way to escape the generous NT assumption that “we’re all alike” - and that the only acceptable way for a decent person to react to difference is to refuse to acknowledge it - is to “hit them over the head” with an example too outrageous to be reinterpreted as “normal.”  And that’s a shame.  As Larry Arnold has written, “nobody turns around and says to someone that they can’t have arthritis because they are not in a wheelchair”
Some people who don’t understand autism or who don’t want to believe that I am autistic will think I am whining or being a wuss about having had a bad childhood.  They might think that everybody struggles in middle or high school, right?  So I should just move on with my life like everybody else.  Or they accuse me of having a bad attitude, telling me the lie from childhood that if I just smiled at people more I’d find more friends.  Or they tell me that I am gifted in life to be able to make it my life mission to socialize with other misfits to make them less lonely.  I don’t think people who say this realize they are asking me to take on the social work they would rather not or cannot do themselves and that unless the misfit in question is a misfit in the same way I am, there isn’t any automatic reason I am particularly suited to the task.  While I am happy to try, as part of being an ethical person, if we are misfits in different ways I might even be worse at trying to reach out to them than other people would be.

What I wish for is that there was some reliable way I could communicate to the world that I want to socialize and be friendly with them but it will help if they take the lead in starting and helping to maintain the conversation.  Or if I was not feeling up to being able to verbally socialize, that people would meaningfully include me even when I am not able to use language in a social way.  For example, when people bring treats in to work to share with the people in cubicles near them they often don’t even offer them to me, acting as if I weren’t even there even though sharing treats is not based in language.  This kind of inclusion would be exactly the same kind of politeness that nobody blinks an eye over when they hold a door open for a person using crutches.  I’ve never learned how to advertise that need for a little help to be included, though I do try.  My desk even has a sign by it saying “Say Hi to Me” on it.  People see my silence or perhaps the adaptations I use to help with my auditory sensory issues (I typically can’t filter out the distraction of background sounds and loud background noise levels can be distressing) and assume that I just don’t want to talk to them.  It is not uncommon that when I try to start conversations with people they seem unaware that I even spoke to them.  I am fairly sure it is not because they can’t hear me.  My voice is naturally on the loud side and I have trouble always even realizing it when I need to be quieter.  I can never tell for certain if I just missed a social cue that would let them know to pay attention or whether they are actively ignoring me.  I worry that if they are ignoring me and I keep trying harder to get their attention on the assumption that I missed giving the right social cue, I might make myself positively obnoxious.  I am fairly certain that at least part of the problem is that in a new social situation it can take me a long time to warm up to people, and by the time I am ready to talk to them (say after several months of sitting near them at work) they no longer view me as part of their social group and are caught by surprise when I speak.  All I know for certain is that I made a substantial effort to overcome my own social anxiety to talk to them and they acted as if I weren't there.  Trying to be socially invisible was something I did as a child to avoid being tormented by bullies.  I stopped trying to be socially invisible years ago, but I often still feel invisible.

Even though in many environments it is common for me to face some degree of social rejection, I rarely see it as the result of people being mean.  People simply find it easier to only socialize with people who are like them.  That is a natural instinct that serves "normal" people pretty well because there are gobs of "normal" people they can meet at almost any time.  For people who have never struggled to find friends, it seems almost mind boggling that only socializing with people who are like you doesn't work for everyone.  I can go years at a time without meeting a new person who I naturally get along with instead of having to work hard and long to build even a basic relationship.  For people who find friends easily, it is easiest to imagine that somehow this is my fault and they have no idea the mental toll their exclusion takes on me. 

Despite all of this, I still try to socialize with my peers at work and elsewhere.  I often feel discouraged but I still try.  Since I often have only a distant awareness of my emotions I often can't tell the negative emotions from this discouragement are building up until they are intense.  Sometimes the only way I know I am in under severe stress is because my body starts showing medical symptoms of high stress such as my jaw muscles locking up, my eye lids start twitching, and my acid reflux getting worse.  Occasionally the feelings become strong enough to directly break into my awareness and I have exhausting days where I think I am feeling fine and then suddenly find myself so deep in anxiety an depression that I have difficulty focusing.  Rachel Cohen-Rottenberg, writing in the anthology Loud Hands (p. 274) describes the emotional landscape I find myself within with painful beauty:
Put yourself in our shoes.  It is vital that able-bodied people consider how soul-wearying it is to keep trying until one finds those people who simply accept the awkwardness - my awkwardness, their awkwardness, our awkwardness - and make a connection.  It hurts the heart to keep going out and trying.  Ask yourself: What is keeping you from extending a word, a listen, a desire for connection to us?  And how does your failure to use your social skills to bring other human beings into community translate into a social disability located in autistic people, rather than in the able-bodied world?
To all the people I have known who have accepted me as I am and been willing to make space for me in their lives, you know who you are and you have my infinite thanks.  I just wish the rest of the world was just as inclusive.  And not just of people like me but for everyone.

Friday, October 20, 2017

I get it… please let me know when I don’t…

Before I started dating my wife I had an unsettling experience.  I was a passenger in a truck and a woman who was a casual acquaintance of mine was sitting in the center seat next to me.  She scooted over close to me and started unexpectedly started rubbing the side of her body against mine.  I had no romantic intentions towards this woman nor did I have any awareness beforehand that she had any towards me.  I never was an opportunist when it came to “making moves” on women.  When like me you know you can’t read people very well the idea of accidentally doing something unwelcome and dishonorable seems terrifyingly possible.  I had no positive or healthy sense of relationship with my own physical desires and here was a woman seemingly at random arousing me because… why?  I had no idea, I just froze, not knowing what to do other than to scoot a little farther away from her on the bench.  I got home and tried to imagine role plays in my mind where I could do something to stop the advance.  I felt guilty about being caught in a situation where I didn’t know what to do.

A week or two later I recall she announced she had a new boy friend, after having previously announced that she was feeling frustrated because she had no romantic prospects.  This felt very confusing to me, how do you go from being frustrated that you have no prospects to going steady with someone within about a week?  And didn’t that mean that she was already well into the process of entering a romantic relationship with someone else when she pulled a move on me?  Did that mean she made a pass at me for her own amusement, either her own physical enjoyment or enjoyment at watching me squirm?  Did that mean that she had been desperately lonely and was trying to get me to pay romantic attention to her?  Was this what my sisters meant by saying men were so blind they had to be hit over the head to see or understand things?  Was it all a misunderstanding?  I doubt it, since it is one thing to lean against someone and another to squirm back and forth in a snuggle.  The fact of the matter is I have no idea what motivated her behavior.  If she had just asked me if I wanted a hug or a back rub because she noticed I was lonely I probably would have happily accepted because those were types of physical touch I have a high craving for, can understand at a platonic level of relationship, and I had no real way of getting at the time.  It would have felt like she was giving to me rather than taking.  I still don’t know if it was meant exploitative or if she just thought that a casual opportunistic snuggle was a great way to flirt.  People rarely make intuitive sense to me.

As a man I can recognize I rarely have had to worry about these kinds of experiences.  I spend more time worrying that my clumsy social skills will make me do or say something really sexist and I won’t realize how it is going to sound until just a little late.  But I do know a little of what it feels like to be taken by surprise by an unwelcome touch, to freeze up, and then feel guilty about it afterwards.  I even know a little bit about what it feels like that nobody would really believe you.  I doubt many people who don’t know me well would believe that this is how I reacted.  Men are “supposed to” always be looking out to “get some” so how could that possibly go wrong?  So please, understand that while I might not really have felt anything like the extent to which you have experienced verbal and physical assaults I do understand some of the pieces of what those experiences are like.  And if I ever say anything that comes across just wrong, please let me know so I can do better.

Saturday, August 26, 2017

Relaxation and Productivity

One of the frustrations in my life is that virtually anything that is enjoyable enough to really make me feel relaxed is also probably something I am border line obsessive about.  Which means that if I sit down to enjoy something I really like chances are it will be difficult for me to stop.  Which means that to maintain good productivity for prolonged periods of time I have to make sure my breaks are only a little bit relaxing or enjoyable.  Because if they were I'd have trouble switching my mind back to what I was supposed to be doing.  So I get into grand swings where I can go weeks or even months without doing anything I really enjoy because I need to maintain a high level of productivity.  And yes, that tends to contribute to periodic bouts of anxiety and depression.  And then occasionally it swings the other way and I am up till 2 in the morning doing something that I love and my personal productivity tanks.  Working two jobs and trying to be a dad actually engaged in my kids lives to the extent that I can sometimes means that I totally lose track of what I might want to do for fun.  Because in order to maintain my personal productivity I often go extremely long stretches of time doing things I only enjoy a little.

Sometimes there are exceptions to this rule, like when I can listen to an audiobook I really love while working.  Only some kinds of work are compatible with audio book listening, so that only helps some of the time.  And if a good audio book is the only thing keeping me afloat I really crash when I can't find one that suits my mood or when my anxiety levels go too high for me to be able to listen to one at all.

So for those of you who don't have obsessive personalities, be greatful the next time you decide to do something you really like for maybe 15 minutes or half an hour and then walk away from it refreshed to do something useful.

Friday, October 14, 2016

The Worth of Souls- and Politics

The concept of divine grace has been coming up in recent politics more than normal.  Since God's forgiveness extends even to the most vile of sinners should the sins of politicians be overlooked?  Should Trump be excused because King David had concubines and had God's favor anyways?  Should white supremacists be personally immune to criticism because as Christian's we shouldn't judge people?  I honestly don't object to religious concepts being used to promote civil discourse towards people... because people are people and have inherent value.  If you want to say that we should define actions as despicable and not people because people are always redeemable or however else you want to express that fundamental respect I am actually very ok with that.  That being said, there seems to be a weird switch going on every time this comes up.  Politicians and religious activists seem to have a tendency to invoke these concepts only when it involves their own political group.  James Dobson can claim Bill Clinton is unfit for the presidency because of his infidelity but that Trump is fit for the presidency because he is a baby Christian who should be forgiven for his mistakes.  Not that all the leaders in this discussion aren't Christian's by some denomination and measure, at least by baptism so that is hardly a relevant point to distinguish one set of people from another as who we should view as receiving God's grace.  Bill Clinton is as a Baptist, Hillary is a Methodist, Trump grew up a Presbyterian even if he lacks much familiarity with Christianity in general.

I think it is valid to argue that there are really two discussions happening here.  One is of someone's political worthiness and the other is about the worth of someone's soul.  Everyone has their political opinions and their political leaders they align most closely with.  Everyone's soul has their elements of brokenness and of goodness and the potential to grow in brokenness and goodness.  Everyone is in some way redeemable and has inherent worth.  I don't think it is dishonest to support a politician whose political goals align with yours even if their personal character isn't to your liking.  But it is very problematic to change the subject from political to moral worth as if they were the same subject.  Sure they are related subjects, but not the same thing by a long shot.  If you propose that your opponent is politically wrong and morally unsuited for office and then propose that your own deeply flawed leader is morally forgivable because God forgives everyone, you run the risk of suggesting that God loves everybody equally but that some people are more equal than others.  At that point the message about God's universal love and your advocacy for moral goodness become eclipsed by your political message.  At which point it would have been better to have never brought up morals or God in the first place and to have just made the argument about politics.  You might even say that the saying about good fences making good neighbors applies to the separation of church and state.  If you try to use God as a servant to your politics your politics can subvert the message about God or subvert your political aims by gaining the opposition of people who believe differently about God.

So go ahead and argue all you want for how we should give broke people a chance to be leaders because God loves everybody- just so long as you actually mean everybody.

Friday, August 19, 2016

Exercise as a mind game

I think there is always a balance between how much increasing the difficulty of your work out routine is actually about slowly building up to build strength and avoid injury and how much of it is just a mind game you play with yourself.  A game where you say "it doesn't matter that I feel exhausted, I can do more" or perhaps "I don't care that the weights look crazy big" or "I'm going to ignore that I'm intimidated by what I'm about to do."  Anytime you increase something there is always that nagging fear in the back of your mind that you aren't really sure if you can do it or not.  Which is mostly a healthy fear- it keeps you from pulling muscles and doing other stupid things to yourself.  But that fear gets in the way of moving on as well.

Growing up as a teenager I loved doing situps.  For one I could do more of them than anyone else I knew with only a few exceptions.  If I had a situps competition with someone else the explosion of power I could command at the start of a set honestly surprised people sometimes I think.  For another it was amazing how many daily life activities became easier to do once my abs muscles were in top shape.  And honestly sometimes the sheer strength was just fun to have.  I was strong enough I could lay on my back and flip my legs up so powerfully so as to throw myself into the air and land in a standing position.

It took probably several years of work to get to my peak- when I did 3 sets of 300 situps 3 times a week.  A lot of that time I spent just being scared- 100 situps in one set was a lot and I felt sore when I got up that high.  It just simply scared me that doing that many seemed kind of insane.  The soreness towards the end of the set of 100 just never seemed to go away.  Finally I got fed up with it and decided to push through the soreness to see how many I could do before failing.  I jumped very quickly from 100 situps to 300.  I discovered it wasn't about whether I was ready to move on physically, it was just a mind game.

Since I started exercising again I haven't really had many specific goals, except that I want to be able to do 300 sit ups again.  After learning how many I could do without feeling like I had practically pulled something I set a goal to always try to beat my last week's routine by 5 situps per set.  As I approached 100 it had me wondering, how much of this is just a mind game again?  I didn't want to recklessly push to see how many I could do before failure, but increasing by 5 has just been painstakingly slow.  In the range below 100 I felt like I had to fight for every increase and sometimes spent a couple of weeks in a row without increasing at all.  Since I past the 100 mark I've started to pick up the pace.  Instead of increasing by 5 every time I've been increasing by 15.  Last week that would have landed me only 10 away from 200, so I pushed through and increased by 25 just to be able to say I hit that mile mark.  Then today I was psyched up enough I increased by 25 again, up to 225 per set.  As I was working through the 3rd set going above 100 I just felt exhausted and scared that I couldn't do it.  225 situps just feels like an insane number, how could I push to that so quickly?  But for the rest of the day my abs have felt fine- no problems.  Tomorrow the stiffness will probably set in and I'll spent 2-3 days feeling the consequences of my rush.  It begs the question, what will I do next week?  And the week after that?  Am I at the point where physically I'm ready but I still have to win the mind game to keep up the pace?  Will it only take me another 3 weeks to get to 300?  Or will I be forced to slow down again, collapsing in exhaustion on my exercise bench?  I simply don't know what to expect.

The problem with doing endurance training with really high repetitions is that they take a long time to complete.  I could use adding maybe another wrist exercise to my routine but I don't have time right now.  Once I hit 300, I plan on switching my situps to be more focused on weight training instead of on high repetitions.  Lets see if I can still do 50 situps while holding 10 lb of weight.  I've never done situps with weights so I don't know what to expect.  But I know when I sit down on that bench there is always the fear that I won't be able to complete  my crazy goals.  But I'm doing it anyways.  Right now I'd say I'm winning the mind game.  And why not?  It's fun.

Sunday, July 17, 2016

What does it feel like now that I have two autistic kids?

I wanted to explain what it feels like now that not only just one but both of my children are diagnosed as being on the autism spectrum.  It is... complicated.

I believe that I am a fully valid person whose being on the autism spectrum is fully part of who I am.  Some days are harder to feel that way because I have to fight to believe in myself.  As I told someone not long ago, I wish I had known I was on the autism spectrum earlier in life so I could have understood why I felt so different from other people and not just like some kind of unexplainable freak.  As an extension of fighting to believe in myself, I have to believe in my children no matter whether they are autistic or not.  Part of me wishes their life didn't have to be as complicated as mine.  But the bigger part of me believes just as much as I believed when my wife and I decided to have children that the kind of life I represent deserved to have a chance to be lived.  We always knew genetically we had a high chance of having autistic children.  That being said, I never would have intentionally tried to have all of my offspring be autistic if I could.  I would have been perfectly happy to see what a non autistic "version" of me could have been like through my offspring.  Now I know that won't happen.  Life is hard enough we don't expect to have any more children and both of my kids are autistic.  While it is easy to say the words "I accept you no matter what" in reality the act of acceptance is tied to the complicated idea of accepting myself.  There is nothing simple about it.

How I feel about my son being diagnosed is so closely tied to how I feel about myself that it is almost impossible for me to approach the subject with other people without including that context.  The thing is, I mostly "pass" as normal and get some privilege from being able to do so.  Whenever I disclose that I am on the spectrum there is always the possibility that I'll run into whatever bizarre stereotypes people have or even direct or subtle bigotry and ablism.  Every single time a person on the spectrum commits an act of notable public violence the news can't help sensationalizing their diagnosis as an explanation for their violence regardless of the fact that autistics are statistically no more violent or prone to criminality than other people.  I can't just walk into my new job and announce "Hello, I'm new here an I have Asperger Syndrome" without wondering whether a coworker will start to fear that I'm a mass murderer waiting to happen or whether my manager will start to view my performance with a biased pessimism based on the assumption that a disabled worker could never be as good of a contributor as a non disabled one.  As a result, even trying to talk about how Lionel has been diagnosed and how I feel about it is a socially tricky situation to navigate.  Unfortunately to be an effective advocate for my sons I need to learn to navigate these kinds of situations.  I already had that problem once over, now I have it twice.

Now I have to confront the world of treatments.  With Taliesin his main problem has always been that social interactions were so frightening that he couldn't talk except to us in specific situations, or in other words selective mutism.  Working with speech therapists in multiple settings and of course just letting time pass has done wonders and he is making great strides to being able to talk to a larger and larger sphere of people.  While he has other problems as well they are not as daunting to us personally.  We've never felt a need to pursue any dramatic scale treatment program.  Mostly he is just fine the way he is as a quirky kid and we could feel ok pursuing narrow treatments for narrow problems.  Lionel, on the other hand, is more "severely" impacted.  I hate using such language often expressed as whether the autistic person is "high functioning" and "low functioning" because these terms generally are used in popular language to mean whether the observer using such phrases is immediately aware of the problems the autistic person has in their life without having to guess much.  Taliesin is not "obvious" if you don't see him in a setting where he is having problems talking, but has problems in his life that I won't elaborate on that are stereotypical of "low functioning" kids even though most people would call him "high functioning" because they can't see the problems.  Lionel, on the other hand, has issues that immediately stand out as what would popularly be called "low functioning" including a delay or abnormality in his ability to use language at a level developmentally appropriate for his age and rather severe issues with trouble paying attention.  In any case, there is a more obvious need to get him a broader scale treatment program.  And, for the first time, we actually have insurance coverage that will help us do that.  In a way is wonderful.  In a way it is a daunting prospect filled not only with questions of how to find the providers, find the time, and find the money but also with the complicated tasks of avoiding the ethical pitfalls of how our culture deals with the treatment of autism.

Therapies for autism have a sullied history.  While I haven't been exposed to many of them first hand since I wasn't diagnosed till I was an adult I've been a part of the autism community enough to learn about the skeletons in the closet.  There are plenty of dead ends filled with fads and quack doctors selling hope instead of medicine.  Some treatment protocols in the past openly advocated for violence and abuse against the children in the name of "curing" the symptoms through behaviorism based psychological interventions.  While generally such dramatic violations of people's dignity are looked down upon now the ghosts of the past are not completely gone.  There are still treatment centers out there that will openly advocate for the use of aversive's and punishments to try to reprogram behaviors.  And even program that don't "intentionally" inflict harm and claim to only practice positive reinforcement can be tainted.  Putting children into situations where they are highly pressured to not show the symptoms that would let people know they are disabled can be extremely distressing- such as being required to suppress stimming or required to show gestures of affection on command with strangers or required to show the appropriate patterns of eye contact no matter how personally distressing.  Once a service provider who had to decide what version of therapy program to run told me that they personally struggled to offer such a program because forcing children into such high stress situations made them obviously miserable.  To an extent valid medicine can hurt just like an injection for a vaccine is still valid medicine even though it hurts.  But when therapies can easily become side tracked by the question of making the child "look normal" instead of trying to help them adaptively interact with the world the infliction of distress and suffering can become questionable.  Another pitfall can be that aggressive service providers and desperate parents will often try to set up treatment protocols calling for extremely long therapy sessions- perhaps longer than 8 hours a day- taking over the life of everyone involved in an act of desperation more than because it is evidence based.  Another pitfall associated with these marathon training programs is that in order to try and make the positive reinforcement training as powerful as possible the service provider will work with the parent to systematically identify everything the child enjoys or takes personal pleasure from- and then remove all access to those things so that the only way the child can gain access to anything they enjoy in life is as a reward for achievements in therapy.  Such a program might technically be positive reinforcement only but is performed in a context of abusively restricting access to anything the child enjoys in life.  I've read that autistics who grew up in such treatment programs learn to try to hide anything that they take pleasure in to the point where as adults the normal social act of someone asking simple questions about what they enjoy is an extreme invasion of their need for privacy that developed as a defense mechanism against their parents and service providers trying to deny them free access to anything that they enjoyed.  Another pitfall of therapy programs is that in order to try to teach "normal" verbal communication it is often suggested that parents refuse to acknowledge any attempts at communication unless a child can reframe the message into "normal" speech.  The problem is that it is completely an unknown factor whether an autistic with a language delay will ever comfortably develop a "normal" speech ability.  Refusing to communicate except through "normal" speech can become a pervasive refusal to communicate or to treat any adaptive attempts to communicate as inherently invalid.  To a point insisting on verbal communication helps develop verbal skills.  Past that point its an abusive refusal to respect the human dignity of the child because they aren't normal.  There is no easy answer as to what is the right thing to do.

On top of it all of the ethical questions and social pitfalls to avoid we simply don't have much spare  time or money to use to pursue treatments.  Even getting Taliesin the limited services he has had has been a real strain.  The entire prospect is honestly daunting and leaves me feeling tired.

After all is said and done, Lionel is still the same person he was before the diagnosis.  He is still the little guy who obsessively loves large trucks, dinosaurs, and trains.  He is still the affectionate little guy who can climb almost anything in the house and on some days loves his broccoli almost as much as he does chocolate cake.  He is still the little odd ball who has for a long time phrased practically all of his questions as statements and frequently communicates through tangential references to his favorite books and movies.  We are enough of an autism family that the diagnosis grants us less an understanding of Lionel which we already had and more gave us the passport to helping the outside world understand who he was, give him the supports that are his due, and have a chance to accept who he is.  So in a way perhaps I shouldn't feel different than I did before.  But there is something in the nature of naming a problem that makes you face it with an urgency you could avoid before.  I could just wish it weren't so complicated.

Thursday, June 23, 2016

Goodbye call center

I've spent the last 10 years or so of my life working at a call center.  It got me through school, provided medical benefits for me and my family, got me started on my 401k, paid for several surgeries, and everything else money does for you when you don't really have much of it.  I started out as a minimum wage employee earning around $7/hr and ended at $13.85/hr, more than most of the managers who were forced to work 50-60 hours a week without overtime pay.  I started as a tenor voiced infomercial order taker whom prank callers thought was a woman when they wanted to talk dirty, next was a ATT wireless tech support guru who advanced to being one of the "ICU" agents who got to do floor support in a white doctors coat, and ended off as a Comcast customer service guy who sometimes got to hide from taking phone calls by working on migrating accounts from one billing or phone platform to another.  I was employee of the month once, and won an award by racking up a large number of compliments and thank you's from other agents once.  I've spent most of the last 10 years working swing shift so that I could do classes during the day time.  Only recently did I get a day shift back again.  The first time I heard a chorus of birds singing in the morning I actually started to cry.

I wish I could say I had more to be proud of for the last 10 years other than that I provided for my family.  I tolerated taking infomercial calls and I've despised working for Comcast.  I am more or less proud of the work I did for AT&T.  Its easier to care about your work when the company acts as if doing a good job for people actually matters.

I've started a new job working in accounting and collections for a manufacturing company.  Basically staring at an excel sheet all day and emailing people to remind them to pay for their orders.  Not exactly rewarding in terms of people interactions, but on the other hand, I've never really been a people person.  But I have noticed some huge corporate culture differences.

For one, the new company publicly rewards people on a regular basis.  Drawings for gift cards are done for people who were complimented publicly or for turning in safety tokens.  A big step up from being offered $1 things of shampoo or pasta as an incentive.

For another, if a fire alarm goes off, the building is to be evacuated immediately.  Instead of waiting for permission while the managers scramble to find out if the alarm is real or not.  According to a long term employee, the call center once ordered people to remain at their desks and continue taking calls during a natural gas leak.  Its not as if they care whether we live or die, nor our customers either.  I was once directly ordered not to reach out to the police on behalf of a woman who was assaulted while on the phone with me, on the grounds that we didn't know the full story so we shouldn't get involved in a domestic dispute.

Another cultural difference is that if something is broken, I have multiple and immediate avenues I can pursue to get it fixed without someone else having to give permission first.  I saw a program break down on someone and they were able to get it fixed within a few minutes and got immediate responses from their IT support when they asked for it.  In contrast with a call center that didn't even have an on site repair guy for quite some time and even when he was around managers didn't always care to file repair tickets in a timely manner or at all.  I once had a login sit disabled for 6 months because my request to repair it was looked upon with suspicion.  A computer next to me remained disabled for more than a month because repair tickets weren't filed in a timely manner after IT broke the computer during testing and never bothered taking their own initiative to fix it until multiple repair tickets were filed.

For another thing, the building is clean.  At the call center trash thrown on the floor could easily stay there for more than a week and the place generally looked pretty dumpy.  For a long period nightly cleanings were being skipped because the night janitor was faking their cleaning records.  It was normal to be able to write in the dust on any smooth horizontal surface and all the computer air vents were clogged with dust.  The new job, well, I have yet to see any trash on the floor and the only places collecting dust are the places hard to reach for cleaning.  There might be dust due to construction in the building, but not due to lazy or dishonest cleaning staff.

I'll be glad to leave the call center behind me.  There were calls I was proud of, like the time I helped a father pick out a good phone for his son with asperger syndrome so his son could text him any time about his pokemon obsession even if he couldn't talk to anyone else about it.  Or the time I helped prove that a business man was telling the truth that a sales rep had over promised the coverage from his plan and cost him $13,000 in data roaming charges.  But in general, the call center has left me in a constant cloud of anxiety regarding whether I'll be fired for having my calls too long or not selling enough or wondering when my next screaming angry person would come on the line.  The absurd levels of dust and the employees who continuously ignored the rules forbidding applying perfumes in the building left my allergies turned up so high for so long I had to have surgery on my sinuses to make it harder for my nose to go crazy on me.  I'm just glad to be finished with call center work.