4:22am September 15, 2014

Six Odd Things Meme

Someone awhile back tagged me for a meme about six odd things about myself.  Or six things about myself.  I don’t remember which.  Anyway, I will answer it now.  Anyone who wants to do it and hasn’t been tagged, consider yourself tagged, I’m not gonna come up with a list of names.  This is gonna be long, so there’s a tl;dr at the bottom.

#1:  My Educational History

I might as well start off with my bizarre educational history.  I think this is how it went.  (I swear I remember doing preschool twice, and I have two sets of school photos from preschool, so that’s why I am guessing that I did two years of preschool, or one summer school and one year, or something.)

• Age 3, Preschool (Catholic Montessori)
• Age 4, Preschool (Catholic Montessori)
• Age 5, Kindergarten (public school)
• Age 6, First grade (public school)
• Age 7, Third grade (public school)
• Age 8, Fourth grade (public school)
• Age 9, Fourth grade (private school, I flunked the admission exam and had to repeat a grade as part of the conditions of admission, as well as for ‘social skills reasons’)
• Age 10, Fifth grade (private school)
• Age 11, Sixth grade (private school)
• Age 12, Seventh grade for part of the year
• Age 12, Independent study for the rest of the year (which I did badly at large parts of, but doing badly at accelerated stuff == doing good to some people, somehow) (private school)
• Age 13, Ninth grade (3 months) (private school)
• Age 13, Homeschool + a couple community college classes (6 months)
• Age 14, Early-entry college, freshman year
• Age 15, no school except institution school when I was in institutions… often institution school meant they gave me a book to read in the corner
• Age 16, institution school (part of which involved me falling asleep so much that they put me in a big chair facing away from everyone and blasted an ebook of The Diary of Anne Frank in my ears at full volume on a Walkman so they could be said to educate me, even though I still fell asleep from all the drugs they gave me).  
• Age 16, also started special ed (non-public school)
• Age 17, special ed (non-public school), plus one community college class (community college).
• Age 18, community college (community college).
• Age 19, a month or two of university in which I made it to class exactly twice and crashed and burned in a horrible way due to a combination of autism, severe severe back pain, and weaning off psych drugs. (University with special program for people who had bizarre educational histories, but were still unable to accommodate me, my history was apparently too unusual, and I was told never to set foot on a university campus again… subsequent autistic students, to my dismay, were told things like “We tried someone like you before… it didn’t work, in a big way.”)

I have skipped grades, repeated grades, been to public schools and private schools and nonpublic schools, been to gifted programs, been to special ed programs, been to schools that only exist in institutions and are really schools in name only, been homeschooled (supposedly unschooled but it was closer to homeschooling because we didn’t know how to do unschooling), been out of school altogether for long periods of time (any time it says “institution school” that means if I was out of the institution I was out of school too).

#2:  Exgifted

Continuing on a similar tangent, the history of my IQ, and why I call myself exgifted rather than gifted.

When I was almost six years old, I was given a series of tests.  To give you an idea of how lopsided my cognitive development was, I didn’t know what the word “test” meant, and it was not for lack of hearing it in context.  I associated the words “testingwithSarah” with this weird big amphitheater-like room I went into and got asked questions and given scratch-and-sniff stickers if I got things right.

From everything I can gather, my scores were all over the place.  From what I have been told directly by people who knew Sarah, she was “old-fashioned” and did not believe in the concept of “twice exceptional” - gifted and learning disabled at once.  So she did her best to even up the jagged peaks and valleys in my scores.  She did this by declaring that I was “disinterested” in anything I did badly at, even over the protestations of my parents that I was in fact very interested in those subjects at times.  One thing I remember was that language comprehension was my worst score and expressive vocabulary was my best score, a discrepancy that has remained to this day.  My receptive vocabulary is much smaller than my expressive one, my ability to write far outstrips my ability to read, and I am often unable to read my own posts.  So that part of the test got something right.

Anyway, being hyperlexic gave me a huge advantage at an age when most kids are only learning their alphabet.  I could already read, or at least decode (change from written to spoken word sounds), and I have been told that this alone can account for my extreme test scores.  So at the age of five-nearly-six, I maxed out every test they gave me.  If I had been exactly six, I would have had an IQ of 160.  I see the stories of children on the news with IQs that high and I cringe for them.  I am happy that my parents never told me my IQ.  And it wasn’t exactly lying to say they didn’t know — 135+ and 160+ aren’t exact scores, they’re just guesses.

I have heard the tape that came after my testing.  The one where Sarah talked to my parents and teachers about me.  I distinctly remember the tone of voice they used, “A chiiiiiiilld like this one, what do you do with a chiiiiiilld like that?”  I remember that more than the words they used.  I know that someone suggested putting me in college classes at the age of six, which I am glad they vetoed because I was really struggling in school due to undiagnosed learning disabilities including hyperlexia.  College would’ve been a nightmare.  College at fourteen was a nightmare, college at six would’ve led to meltdowns and shutdowns and burnout on a scale you wouldn’t believe.  But simply because of my IQ, they suddenly acted like I’d changed somehow, become a different person than the kid they knew before the IQ test.  

I was in GATE (Gifted And Talented Education) in first grade, third grade, and fourth grade.  This ranged from a class in which we did a lot of enriched activities, to a class that barely differed from the other classes other kids were getting.  First grade was the only time we did anything creative or challenging.  Also, in fourth grade the teacher told us “You’re talented, but none of you are gifted, so never think of yourself as gifted.”  I don’t know WTF that was about, but she seemed angry at the entire idea that there could be a ‘truly gifted’ student in her class.

I was in Lyceum, a program for “gifted” kids where parents and other members of the community teach kids everything from farming to building crystal radios.  This makes me angry because this is the sort of hands-on stuff that is exactly what a lot of students with learning and intellectual disabilities can excel at, or at least get a lot out of.  But here, it had an IQ cutoff.  I didn’t realize it had anything to do with IQ at the time or I might have quit in protest.  Lyceum was better than GATE because it actually taught you hands-on skills and you got to pick what you did.  Everything from nature walks to trips to the Lawrence Hall of Science.  It could literally be anything.  And that’s why I believe Lyceum should be available to all kids, especially those whose love of learning is being crushed by school because they have intellectual or learning disabilities.  Many kids trapped in the special ed system would give their eyeteeth to be in a program like Lyceum.  It’s not fair that they aren’t.  And remember, I’ve been in special ed, I know what passes for education there, even at the highest level.  I don’t know how long I remained in Lyceum.  Unlike GATE, it wasn’t tied to the school you were in, so I might have remained there even after moving to a private school that lacked GATE.

(And before anyone asks… my parents were not rich.  Unlike just about everyone in my private school, my parents went into debt putting me through there.  They did it because they thought it would stop the relentless bullying I was encountering in public school  They thought I’d get a better education there, too, because of the smaller class sizes.  My family, even at its poorest, has always been a huge believer in education.  It’s a myth that only rich people go to private school, and it’s a myth that only middle class and higher people care about education.  My great-grandfather never graduated eighth grade, and he made it his mission that any of his kids or grandkids could go to college if they wanted, he would find the money somehow, even though he was very poor.  My grandfather on the other side had an eighth grade education and was an autodidact.   Don’t believe everything you hear about class and education.  Sometimes it’s true, but often it’s not.  And I was a mixed-class  kid going to a private school for mostly upper-middle-class and rich kids.)

When I was 12 and 13, I attended a summer program for students who had taken the SAT and gotten above a certain score.  My scores were good for a 12-year-old but not spectacular for people actually in the program.  The only thing that stood out was that my math was significantly better than my verbal, and this was considered unusual for a DFAB person.  This summer program consisted of two three-week sessions in which you got to pick a class and take it at an accelerated rate.  I took Latin, Math, Archaeology, and Writing.  

Alumni of that program love to brag about there having been no bullying there.  Either they were the bullies, or they were safely off in their little enclaves with their groups of friends to protect them.  I was bullied.  My friends there were bullied.  I had a reputation as “crazy” from the moment I got there, much like Luna Lovegood, who I resembled quite a bit.  One of my friends met me because I was twirling and stimming off at the outskirts of a dance, and she asked who I was.  “That’s Amanda, she’s crazy.”  My friend was intrigued and managed to wangle a roommate-swap, during which we got to know each other and bonded over Madeleine L’Engle, whose books I used to explain my echolalia, having never heard the term echolalia before.   (Mrs. Who, anyone?  She could only talk in quotes.)  So I did make two lifelong friends there, the other being my ex-boyfriend.  But it was not a place free of bullying.  It was not Gifted Utopia.  In fact, the people bullied the most were those of us who were visibly neurodivergent, and everyone knew within an instant of looking at me that I was neurodivergent.  My friend who met me that night told me that year, “If you walked into a room with a hundred people in it, you would be the one person whose heartbeat, body language, and body rhythms didn’t sync up with everyone else’s.”  How little did she know…

I was not in any gifted programs in ninth grade, and in fact was thrown out of class for being on drugs when I’d never even seen a drug in my life.  An art teacher took pity on me and allowed me to use her classroom that period.  She told me “I don’t care how you behave, I don’t are if you sit under the table [word must’ve gotten out about me doing that in some classes], as long as you produce art.”  So I sat in a totally empty room and produced art and was as happy as I could get at a school where kids jumped up and down on my hands for fun and said “See, she doesn’t react, she doesn’t feel it!” by way of an excuse.  But ninth grade did mean I got to participate in Junior Classical League and Junior Statesmen of America, even if there were no gifted programs.  JCL was a lot of fun, we even put on plays in Latin.  I got to stay in JCL even after I dropped out of school, leading some kids to gleefully brag to the other kids that we had a “real high-school dropout” on our team.  o_O  JSA just led to embarrassment when I lost language in front of a crowd of hundreds of people and got accused of being stoned.  Also didn’t enjoy watching people dance around and throw up, and then have actual sensory issues (hangover) in the morning that I had to deal with all the time.

Because difficulty in school for a gifted kids is invariably treated as boredom.  And because autistic kids are echolalic and will repeat what we hear people say about us.  I got sent to an early-entry college for my next year.  It was the hardest school year of my life and made me contemplate suicide more times in one year than I can remember before or since.  The suicidal thoughts all stemmed from the fact that I knew I couldn’t keep up this facade of being “functional” much longer, and that when it fell, people were going to be upset and maybe want to institutionalize me.  I was right.  The only place I was wrong was in the idea that there was no possible place for a severely disabled adult outside of an institution.  If I’d seen people like me, people like I knew I was inside, people like I knew I was becoming, living on our own, even if it meant on welfare and getting services, it would’ve changed my viewpoint on suicide drastically.  As I’ve said before, telling people “You might be cured and not need to worry about institutions” is not hope when you know it’s never going to happen.

College was hell because it was high-school aged kids (I still think of it as high school sometimes), put in a college setting, with no supervision beyond what normal college kids get.  They are supposedly vetted for maturity but that’s bullshit, there’s just an interview, and mine was done by phone.  They are allowed to run wild and do whatever they want.  Whatever they want often includes bullying neurodivergent kids.  There are lots of neurodivergent kids at this school.  The school nurse was a psych nurse.  The most visibly neurodivergent kids got bullied the most, while other neurodivergent kids often joined in the bullying in order to finally be the one on top instead of the bottom.  The bullying was complex and psychological and downright scary — not the sort of thing you’d believe until you saw it.  I still have bullies to this day that I acquired at that school, and I haven’t seen them in over half my life by now.  And yet they continue the bullying.

Interestingly, this was not a school for gifted students, nor was it particularly elite, even though those are common misconceptions.  There was no IQ cutoff in order to join.  There were no test score cutoffs of any kind.  I was 13 when I first saw a neurologist, 14 when I went to this school, and 15 when I got my second IQ test.  In my second IQ test I scored 120, which was considered superior but not gifted.  Again, my sub scales were all over the map.

So I officially became exgifted at the age of fifteen when I stopped having a gifted IQ.  But we don’t know at what point between the ages of almost-six and fifteen, I would have stopped scoring in the gifted range.

I was in special ed and institution schools after that, when I was in school at all.  I tried going back to a community college with a good reputation for disabled students.  Best in the state, in fact.  It went very well, possibly my best attempt at college yet.  But it burned me out and by the time I was ready for university, I simply couldn’t do it anymore.

When I was 19, I got SSI.  Part of SSI that is really weird, is that even if you have a permanent condition that literally will never go away, they still sometimes demand that you come in and prove to them that you still have it.  So it was with autism.  When I was 22, they interviewed me and my staff and gave me my final IQ test to date.  I thought I’d done pretty well.  The tester told me that the test showed me I was so much smarter than he had assumed when he first met me.  Years later, I ordered my SSI records so I could have them on file with a state agency.  To my shock, while my subscores were again all over the map, my overall IQ was 85.  I’d been expecting something in the 110-125 range so this really surprised me, given that he had told me it showed I was much “smarter” than he expected.  I don’t believe in IQ tests showing how “smart” you are, but it was still a shock to my system to know I’d literally lost 75 IQ points over the course of my lifetime.

Now I seriously consider myself exgifted.  There is no way that an IQ score of 85 is gifted, even with my Block Design and Matrix Reasoning scores higher than that.  I don’t believe in IQ at all, but I do believe that the concept of giftedness is tied to IQ in a way that can’t be removed, so if my IQ is not in the gifted range I can’t consider myself gifted in the way “gifted” is used in school.  I could be a gifted artist or a gifted athlete, but I am not academically gifted.  I don’t mind not being academically gifted.

I know a number of autistic people who were regarded as academically gifted as young children but who ‘outgrew’ it and now have normal or low IQs.  I think it has something to do with the fact that IQ tests are mapped on a developmental pattern that autistic people don’t share.  So there are often autistic people whose scores start out very low and end up very high, and also autistic people whose scores start out very high and end up very low.  According to Michelle Dawson, large changes in IQ across the lifespan are normal for autistic people.  She’s read more studies than I can even imagine, and has a near photographic memory for the contents of them, so I assume she knows what she is talking about.

I don’t know how other exgifted people feel, but these are some of my guidelines for not making me want to throw things at you:

• Don’t ever tell me that one of my IQs is my real IQ and that my other IQs are false IQs that don’t show the real me.  There is no such thing as an IQ that will show the real me.  There is no such thing as a real IQ lying hidden somewhere inside my brain.  IQ is only a test score.  That is all it is.  My real IQ is whatever my last test score was.  This means that for now, my real IQ is 85.  Get used to it.
• Don’t talk at length about how you can’t hold conversations with people with normal IQs or low IQs.  You never know the IQ of the person you’re talking to.
• Don’t assume you know the IQ of the person you’re talking to.  There are people with IQs in the 40s who can pass for nondisabled.  Think about that when you tell me there’s no way my IQ is 85.
• Don’t equate IQ with intelligence.  There are smart people with low IQs and dumb people with high IQs.  “Smart,” “stupid,” “dumb,” and “intelligent” are not words that have anything to do with IQ, with giftedness, or with intellectual disability.  
• Also, many people have been diagnosed with both giftedness and intellectual disability.  Sometimes both at the same time, sometimes at different times in their lives.   Sometimes gifted first then intellectually disabled, sometimes intellectually disabled first then gifted.  These are not categories that are mutually exclusive within a lifetime, for all kinds of reasons.
• An 85 IQ makes me officially high functioning by some standards, mid functioning by other standards, and low functioning by other standards.  I didn’t create these rules.  I don’t believe in functioning labels.  But people who use IQ to measure functioning labels have not standardized a particular cutoff point, so my functioning label according to them is going to vary.
• Don’t tell me 85 isn’t my “real IQ” .  Until I get tested again, it’s my real IQ.  If and when I get tested again, my next IQ will be my real IQ, whether that IQ is 50 or 150.  The only thing a real IQ is, is a test score.  Nothing more, nothing less.  It is insulting to tell me 85 is not my real IQ — it means that you either believe it should be higher or lower, and you probably believe that based on preconceived ideas about what a person with a certain IQ can do.  Donna Williams has an IQ of 67 (very mild intellectual disability) and she has achieved more in her lifetime than I probably will ever achieve in mine — nine books, some of them bestsellers, savant-level painting and sculpture skills, a university degree, running a consultancy and a small business, and much more.  IQ is simply not what you think it is, if you think those things are incompatible.
• 85 is also a weird IQ because it’s on the border between so many things.  It’s right near the upper border for low functioning autism (which is around 90 according to some standards).  It used to be the upper border of intellectual disability, before it was lowered to 70.  It’s now the upper border of borderline intellectual disability.  These are not categories I care much for, but they’re categories that some people care a good deal about.  It’s strange to me to be sitting right on the edge of all of them.

At any rate, I’m happy with the category of exgifted.  It’s a category I made up myself, but it fits the life experience of a lot of people I know.  Many of us are people on the autism spectrum whose cognitive development did not follow the usual pathways.   Many of us are also people who qualified as gifted until we experienced brain damage of some sort — whether from oxygen deprivation, head injury, stroke, medication, or something else.  But all of us have had to deal with massive changes both in how we interact with the world, and how the world interacts with us.

The category of exgifted makes a lot of people uncomfortable.  They want to find a way to say “You’re still gifted.”  They don’t even ask us whether we want to still be gifted.  They don’t ask us whether the category of gifted was meaningful to us.  They don’t ask us whether we feel we, or others around us, were harmed by the idea of giftedness.  They just get really uncomfortable and try to shoehorn us back into the category of gifted.

This includes saying things like “Well you can do all these things I can’t do!”  That may be true.  But people can have talents, even extreme talents, without qualifying as gifted.  I’d say that 90% of the responses I get that try to shove me back into the category of gifted are extremely ableist.  They presume that only a gifted person would be able to do certain things, which presumes that people who are not gifted could not do those things, which is insulting and bigoted towards people who are not gifted.

I am comfortable with being exgifted.  It has taken a long time for me to be comfortable with it.  It has meant having to come to terms first with what it meant to have been qualified as gifted in the first place, and then what it meant to lose all that.  And both of those things were very hard.  But I am comfortable with it now, and I would appreciate if other people would become comfortable with it as well, instead of trying to find ways to persuade me that I’m really still gifted.  I’m not gifted.  I don’t qualify as gifted.  I don’t want to qualify as gifted.  And I don’t appreciate attempts to convince me that I ought to qualify, or want to qualify, as gifted.  

I have a lot of mixed feelings about giftedness in general, but I have no mixed feelings about my own status:  I am not gifted, I may once have qualified as gifted, but I no longer qualify, and I do not want to qualify, please leave me alone about the matter, FFS.  Basically.

#3:  I corrode jewelry.

My friend is a jeweler.  She hates making jewelry for me, because my sweat seems to corrode most of the common metals she uses for necklaces and stuff.  We have lost count of the times I’ve brought beaded necklaces back to her in pieces, with obvious corrosion marks on the metal or string.  I’ve had the same problems with jewelry I buy, and it becomes very obvious when I’ve been lied to about the quality of the metal I bought.   And since neither my friend nor I are rich, it’s hard to afford metals that won’t corrode on me.

#4:  I appeared to my dad as a hallucination before I was born and saved him from hypothermia.

Okay, so this is more about my dad than about me, but he swears that I really looked how I was going to look.  I’ve heard that when people are dying of hypothermia, they often experience hallucinations that specifically help them keep going.  When his tent collapsed covered in snow in the Sierras, he was so cold that all he wanted to do was roll over and sleep, which would have killed him.  Supposedly, I appeared in front of him as I would look as a little kid, and told him  “Daddy, I need you.”  My mother was pregnant with me at the time.  And that gave him the motivation to dig his way out of the snow, find a way to get warm, get out of the mountains, and get home.

#5:  I am in love with my feeding tube.

I’ve never fallen in love with a piece of medical equipment before, but I truly am quite attached to my feeding tube.  I absolutely love the thing, I love everything about it, I love the convenience, I love the ability to drain my stomach, I love the ability to bypass my stomach.  But most of all I feel like it’s a little living thing inside me that I have a relationship with and nothing can convince me otherwise.

#6:  Until the law changed, my cat was considered a service animal.  For real.  (Now she’s just an ‘assistance animal’, which qualifies her for housing, but not being in public.  Which is fine because I never took her in public in that capacity anyway.)

Before I had services, I only had two ways to get prompting in order to move and get stuff done.  One was on the phone with a friend long-distance.  The other was Fey.

We developed an incredibly close bond during that time.  And she learned how to get me moving when I had a motor freeze due to autistic catatonia.  Because I was starving and constantly stressed, I froze for most of the day many days.

Fey could jump onto my body and, in the perfect sequence, nudge my hands, my arms, and my legs, over and over again, until she saw movement, and then she’d go to work expanding that movement until the whole of me could move again.  If she saw one part of me moving repetitively she would start at that place and work her way out from there.  If I was lying down, she would get on top of me, and walk back and forth up and down my body nudging me with her head.

If I tried to fake it to show people what she could do, she was having none of this crap.  She would give me a death glare and a quick and nasty bite, and then walk off.  So people only got to see what she could do if the freezing was real.  Comments I got when people saw the real thing were things like “That’s really spectacular” and “I’ve never seen a cat behave that way.  If I hadn’t seen it, I wouldn’t have believed it.”

Getting me moving in this way enabled me to do anything I needed to do.  Feeding the cat and changing the catbox were her top priorities for me, of course, but I could also get up and go to the bathroom, sometimes eat something, wash dishes, or something like that, if I had the energy and didn’t fall down on the way.

Fey literally saved my life until I had services.  Between her physical prompting and my friend’s verbal prompting I was able to get just barely enough food and water to survive, and of course make the cat happy and well-fed too (her needs always came first).

I’ve since tried to train humans to do what Fey can do.  They vary in their skill, but none of them even approaches Fey’s level of expertise.

TL;DR:

1.  I have a long, weird educational history where I have been to public school, private school, Catholic school, homeschooled, early-entry college, institution school, no school, special ed, community college, and a badly botched attempt at university, in that order.  I’ve both skipped and repeated grades.  What I missed in the skipped grades doesn’t mean I know the curriculum from those grades, it just means I missed that curriculum altogether.  So it makes saying “How much school did you finish?” an exercise in frustration.

2.  I used to qualify as gifted and now I don’t.  I lost roughly 75 IQ points from the ages of 5 to 22.  My most recent IQ is 85.  Don’t try to tell me it’s not my ‘real’ IQ or I’ll… I don’t know what I’ll do, just don’t do it, it’s insulting.  So is using talents I have now to say I’m “still gifted”, suggesting that non-gifted people can’t have those talents.

3.  My skin or my sweat or something corrodes metal or than usual.

4.  My dad hallucinated me when he got hypothermia before I was born and it saved his life.

5.  I’m in love with my feeding tube, even though I’ve never been in love with a piece of medical equipment before.

6.  Fey is an assistance animal, and used to be known as a service animal (until the law changed to make that only possible for dogs), because she knows how to break me out of the motor freezes I experience as a result of autistic catatonia.  She can do it better than any human I’ve ever trained.

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