Wednesday, September 11, 2013

DYMPHNA is Like Your Child

Additionally, DYMPHNA wants you to know that they are a ladle, and that they are not me. They did, however, get the ladling from me. [Me is Yes, That Too.]

I am patently terrible at writing introductions, so rather than make some big to-do about saying what I’m going to say before saying it, I think it’s a much better idea to dive right into the heart of the matter at hand.  I will give the exposition of telling the reader that this is a story that touches on two major and commonly made themes of this blog: (1) that the expectation that Autistics be as “normal” as possible screws Autistics over consistently, (2) that Autistic children, when permitted to survive past childhood, become Autistic adults, and (3) functioning labels are bullshit.


The germ for this post started when I read a blog post (http://autisticchick.blogspot.com/2013/03/imagine-this.html) that everyone should read wherein the author talks about the some of the prospective futures they face as an Autistic.  Well, here I am, a college degree and some years later, able to speak on the matter from the other side of the chasm.


Let me level with you: my current situation is not good.  I recently lost my job, I’m in massive debt, I’m being evicted from my apartment, and my medical insurance will have probably expired by the time this is published; all the while, I have an occupationally useless degree, one reference from a job that fired my in a field I didn’t particularly care to work in for reasons that will be revealed, and I live quite far away from any family whom I am way too proud to ask for help for reasons that will also be revealed.  Despite my bleak situation, the relevant aspect of this story isn’t the present situation, but rather how this situation came to be.  It didn’t happen suddenly that I just found myself unemployed, penniless, and approaching destitution.  This tale actually starts before I was in high school.


Our story begins in the infernal times plagued with bullying, hormones, and lunchroom antics owing largely to a combination of the former two and the students having ready access to caffeine, times known as “middle school”, which must have been a punishment for some horrific sin I committed in a past life as this clearly must violate international torture laws.  During this time, I had a full time aide whose job was to come to my classes with me and help me remain organized and get things done.  It was something that I needed, as, when I didn’t have one back in fifth grade, my academic life started to go completely to pieces (herein lies the subplot of me crying at the end of the first quarter in fifth grade because I got a C in English class, which was always my worst subject).  In sixth grade, it was decided that this aide would join me for classes.  She was by nature a lovely person and, although we certainly tortured each other a little bit, her being with me was helpful to my overall scholastic life.  In seventh grade, I had different person with me.  This person did not handle the rocky nature of our relationship quite so well and, during the final quarter of my seventh grade year, I believe she basically fired me for being too difficult to handle.  While I’m generally unapologetic about my personality and whatnot, I readily admit (and readily admitted at the time) that my 12-13 year old self was probably not the easiest person to manage and remember distinctly make several attempts to better our relationship, but alas, it was not meant to be, so I faced the fourth quarter of that year alone.  I’m sure the results were absolutely unpredictable.
In that quarter alone, my grades dropped.  My grades dropped in a measurably significant way.  A class in which I had gotten an A(+) every quarter (history) went to (I think) a C+ during the final quarter.  So, in light of these stellar results, someone had decided that I was best served flying solo during my eighth grade year, which, I will tell you, went swimmingly.  So swimmingly that I nearly failing English two out of four quarters and ended up being on some sort of grounding for my grades the entire time.  The story in history was not as bad as the story in English class, but it was still not stellar.  Science only was good because (a) I’m good at science and (b) that teacher would have let me get away with MURDER in that class and math was only good because the homework didn’t count as part of the grade.


High school got even worse in some respects.  Up to this point, aside from English class, the material was never actually difficult, but now that I had transferred to a new district for high school with challenging curricula, I had all of the previous difficulties associated with keeping myself organized and having the executive function to get homework done on time compounded with a curriculum that was something that no course had ever managed to be: intellectually challenging.  This was also not helped by some teachers who, for whatever reason, had decided that the accelerated curricula I was in were too difficult for me, despite the fact that I knew the information, but could not regurgitate in a way that meshed with their formulaic grading styles.  I, a highly gifted student, finished high school without one AP credit in a school that offered over a dozen.  Why was this happening?  The issue was clearly that I was not studying or working at this.  I spent every single night of my life doing homework those two years.  I can still talk about US history up to the civil war in entirely too much detail owing to the hours of time I spent studying that material.  Things were not helped by the fact that I had a parent who decided that I didn’t hate myself enough for failing to achieve academically, whose idea of how to motivate me was to scream at my for hours on end and to insult me by comparing me to my late grandfather who was starting to die of Alzheimer’s at the time and for whom this parent had no respect or to tell me that my fate would be to work at McDonald’s and live in a trailer park if I insufficiently hated myself for my academic failures, which were certainly the result of my moral failures.  I just wasn’t trying hard enough.  If I had been trying, I would have done better.


Unfortunately, by the time college came around, this was the attitude I had internalized, that my failures were merely reflections of insufficient effort on my part.  Some aspects of the academic life got better, but some got much, much worse.


First of all, no one cared if you missed class; you would just fail.  Mornings were never a great time for me.  Now they were my absolute kryptonite.  Now, there wasn’t someone making sure I got up in the morning, nor was there someone telling me to go to bed at reasonable hours.  Many times I fell asleep after sunrise and awoke after sunset and missed every class of the day, only to spend the night aimless wandering the internet as I do now.  Sometimes I would be up for 24 hour increments and sleep for twelve hour increments.


Second of all, I never actually developed a mechanism for making myself do homework.  Rather I developed strategies for figuring out how to bolt around the school to get a paper signed so that my parents could see what I had to do and make me do it.  However, in college, if you don’t do the homework, you fail and between missing classes and not doing the work, I failed classes.  Not just one or two, but several.  I failed classes that I understood to such a high level before taking that class that I could have passed the final and forgone taking that class if that had been an option.  I failed classes because I meant to drop them, but never remembered to do it until the drop date had passed.  I almost got kicked out of college during my fifth year, but managed to stay in and get my Bachelors Degree in a useless liberal arts field that presented no career opportunities.


Then, after I graduated, the time came for me to get a job.  So I applied and luckily had sufficient experience with my part time job in college that allowed me to get a pretty good paying full time job.  I took the job, moved two states away from home, and started trying to be an adult.  You know, make friends, go to work, pay bills, have fun, etc.  Well, this didn’t go so well.  Turns out that making friends in a completely new environment is hard.  Really hard.  Especially when you don’t have school to help you do it.  I had two friends vaguely in the area, one of whom was never available because of conflicting schedules and one of whom I ended up living with in a hellish arrangement that may have ruined our friendship.  On top of all of this, I started to seriously struggle at my job about eight months in due to serious executive function issues.  It took nearly a year of strife with my boss before I finally lost my job, a year that warped my mental health horrifically.  In the meantime, my living situation had deteriorated into squalor living with a roommate who had become emotionally abusive in a bug infested hellhole hours away from anyone who had the resources to help even if I weren’t too damn proud to ask them.  I started a huge fight with my family at one point that pretty much ended up with me breaking down into tears about how much I hated every aspect of my life.  I made a plan to change it, but sticking to plans is really hard.  Four months later, I’m broke, facing eviction, in debt for school, and, probably most importantly, uninsured.  I live in a trashed apartment.  My laundry hasn’t been done for weeks.  I love to cook, but every time I go to the grocery store, I seem to walk out with eggs, butter, and lemonade since actually planning a week of meals is not a skill I ever really learned (not to mention that attempts to do so and sticking to the aforementioned plans were failures, as sticking with plans is hard), thus resulting in my wasting an obscene amount of money on take out.  I haven’t managed to pay the rent in months and am being evicted.  This is my current position.


I mention being uninsured because the upside to me losing my job is that I might finally have the spoons to get some of my personal life in order.  Part of that meant seeing doctors and getting prescriptions for things that would help me get my life together and figure out what I’m doing.  However, now that I have the downtime to permit me the executive function to see doctors and get drugs that, had I been able to get them while I had a job, might had saved me this job, I will not be able to obtain them because I will not have health insurance.  This is my life.


We all love to believe that some happy result waits for Autistics like me because I’m “so smart” and “so high functioning” that I can’t not be successful, but the truth is not the dream you want to see.  The truth is that I, admittedly the picture next to “high-functioning” in the dictionary, failed.  I failed at living on my own.  I failed at having a job.  I failed at keeping my finances in line.  I pretty much failed at everything.  Moreover, despite my great disability pride, despite me knowing that the reasons are not necessarily my fault, I will probably have to be literally homeless or sucking dick for money before I ask my parents for help because I know that the judgment will be that my failure is my fault.  Even if they love me just same, that judgment is inescapable.


I was taught that the way I functioned in sixth and seventh grade, taking help and being successful, was fundamentally wrong.  I learned at some point that it is better to fail on your own than to succeed with help, because succeeding with help doesn’t really count, not to mention that they were, unfortunately, preparing me for the reality that there really isn’t help for people like me.  Just like the aforementioned blogger explained, if you’re smart, you get no resources.  As Neurodivergent K will readily tell you, twice exceptional is twice fucked.  Who cares that I got an A+ in my college level physics class, that I can analyze music by ear, that I understand the complex political situations surrounding U.S. politics in the reconstruction era, that I can recite 40 digits of pi, or that I have several Robert Graves poems memorized and ready to deploy at a moment’s notice?  None of that has helped me at this point.  All of that has been distractions that have prevented me from focusing on what I should really be focusing on, but all of that is the reason that I will be laughed out of the room if I talk about having a disability.  So I guess I’m resigned to be another one forced into the cracks.  This is the reality of an ableist world.


~~~~~~~~


That’s what I wrote several months ago.  Things have since changed.  I managed to swallow my pride and tell my family what’s happened.  I resolved the rent situation with my landlord and got them paid current.  I now have a viable career plan that I am executing and I live in a place where I have tons of support.


But the thing that I want everyone to take home from that blog post is that being gifted and being disabled are not mutually exclusive.  This is something that people have written a lot about, including the “Two Women” posts on both “Yes, That Too” and “That Crazy Crippled Chick”.  What I want everyone to take away from this is that functioning label rhetoric isn’t just annoying.  It doesn’t just irritate us, although it does irritate us.  When you tell us that we’re took high functioning and that we’re “Not like your child”, you are denying the truth that, while we are Disabled and proud, we are still disabled.  We need help sometimes and this whole high-functioning rhetoric creates both a culture of shame around us having needs and denies us the help we do need when we need it.

10 comments:

  1. Replies
    1. DYMPHNA is an Irish saint venerated in the Roman Catholic and Eastern Orthodox Churches. She lived in the 7th century C.E. and fled her father, a minor feudal lord, who, stricken with grief from his wife's death, desired her. She is the patron saint of runaways, victims of incest, and mental health disabilities.

      DYMPHNA is also an Autistic who is labeled as androgynous, lives with extreme pastiness (of the Irish and German variety), was touched by queerness and asexuality, happens to like music, and suffers from anti-cis bigotry and an extreme intolerance of oppressive bullshit.

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    2. Oh, dear. I think I also suffer from an extreme intolerance of oppressive bullshit. Either that or I'm a hypochondriac.

      I'm now self-diagnosed EIOB.

      Amy sent me here, by the way. She tagged me in a comment.

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  3. I have an 11-year-old son who is twice exceptional. The local public school was determined to make him "indistinguishable from his typical peers" which basically meant ignoring the places that he scored in the 99th percentile as well as the EF issues where he scored at <1 percentile. Because he was smart and had a Mom who was very involved, he was able to get straight A's, but without his intelligence, and without me spending 2-4 hours every night trying to help him figure out what homework he needed to do, how to break projects down into smaller chunks, plan for long-term projects, and all those other wonderful EF tasks, he would have been getting C's or even F's.
    So, because he did so well last year in 5th grade, with a full-time 1:1 aide whose main job was to help him stay organized and write down homework, the school decided to wean him off the aide. We agreed to having the aide at the beginning and end of each class to help make sure that assignments were turned in and that new assignments were written down. That was what was happening for the last month of last school year. But, at the start of this school year, somehow the idea of helping with "transitions" was no longer 5-10 minutes at the beginning and end of each class, and was instead interpreted as walking with him in the halls from class to class. Since he has 8 different teachers, the aide was the only cohesive factor for him last year. Having a new aide who is assigned to 4 kids in 4 different classrooms rather than his own full-time aide was not working.
    Plus, the school decided to cut the budget by getting rid of the gifted program. So, his gifted side was being ignored as well.
    I finally decided that the stress of all of this was just too much. My son has severe anxiety with the autism. I also have anxiety and Asperger's (my husband has Asperger's also). So, I pulled my son from the school and we started doing the K12 online schooling.
    I can know help him directly with the EF issues. He can shine in the classes where he excels. I can give him extra time and help in the classes that he struggles.
    This is not the answer for everyone. It was a horrible choice when we tried it two years ago. But, this time around, we seem to be in a different place, and it is working. I am seeing a child who is overall happier and less stressed than he has been in almost 2 years.
    I still struggle with EF issues. I have learned that I am unable to pay bills. But, my husband is great at paying bills. I am generally better off buying books rather than checking them out of the library. I seem to have trouble remembering to return them. But, between us, we function reasonably well. Separately, we would both struggle. So, we show our son how each of us works and how it helps to find someone who can fill in our weak spots.
    I hope that my son will one day be able to understand his own strengths and weaknesses and be able to ask for help where he needs it.

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  4. Wow. True. Low functioning means gifts are ignored, high functioning means challenges are ignored.
    Sharing.

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  5. I really appreciate this post. My son is "high functioning" and also has severe ADHD. He doesn't particularly excell at any one thing (but he is still young), but planning, organizing and executing so much as a bath is often impossible. As a parent, it's incredibly frustrating because I WANT him to be as independent as possible. The thing with us parents is that we live in fear. Fear that our child will be grown and dependent on "the system" to care for him. We fear this because there are so many abuses in the system, and so many shortcomings. So we push our child to learn as much as possible, to beat the clock, so he can be independent and not need to rely on others for care or support. Yet the pushing we do causes stress and, clearly, won't change the fact that he may need help in different areas. This post made me realize that instead of fearing an uncertain future, it will serve him better to just feel supported and encouraged by us, rather than rushed.

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  6. I am not independent either, DYMPHNA. So relate to your story. And I know who you are and I love you, as you know. To the last poster, thanks so much for reading this blog and commenting. Love. I think you are right, and this can make all the difference.

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    1. There is another ecosystem we are making which is community. It is better. Interdependence in community... I hope the fears get less over abundant and the joy abounds more for you and yours. It is my prayer for all parents, including my own, and including my self: but now it is mostly for you, Flannery. Love, Ib

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