Being the Class Project: Reflections upon False Inclusion

Helping the awkward new student seemed like a good idea, so why did it make everything worse?
In fourth grade I changed schools between the third and fourth quarters. I not only changed schools, but also entirely different states, as my mother took my sister and I with her to live with Grandma for a few months. (I do not know the circumstances behind this; adults did not feel the need to explain things to children.) Undoubtedly it was to be to my benefit, because my initial fourth-grade teacher was a poor example of the profession, and I did not mind leaving her classroom. Another benefit to me was leaving the cohort of students I had been with for the past few years; I hoped the new students would be “nicer”. Unfortunately, I was an odd little girl and apparently went through life with a sign on my back that read “clueless,” as I was to be picked upon where-ever I went.
All transfer students face the same challenges of adjusting to different neighbourhoods, buildings, teachers, textbooks, rules, and grading schemes. Apparently it did not take long for the teacher to catch onto the fact that I was not adjusting and making friends in the hoped-for manner. Presumably a request was put to my classmates to help me by offering me encouragement. I have no idea how this was instituted; like many of the subtler or implicit social things, the effort was completely off my radar.
One of the reinforcement mechanisms the teacher had was a “warm-fuzzy” type box for the students to drop in anonymous notes praising each other for various activities. These were read aloud by the teacher once a week. After I had been there for a couple of weeks there was an abrupt flurry of missives complimenting me on my efforts at spending time on reading or being helpful in my classroom duties. I found such approval odd, for we all had the same duties, and reading was simply something I enjoyed. Why should someone be commended for having fun?
Actually, I found such praise to be entirely unrewarding, and the realisation of that sat uneasily upon my young mind. I did not have the concept of “hollow praise” in my mental world yet. But I knew that although the words given to me were accurate, they lacked any semblance of real meaning. If the immediate purpose of this exercise was to boost my self-esteem or to comfort me, it truly did not work. Rather, it made me more anxious with the indescribable angst about how I was “supposed” to feel, and added to the ever-growing concern and unease about what I was “doing wrong”.
Moreover, if the long-term goal of this exercise was to initiate friendships between myself and the other students, it likewise did not work. Friendship is usually a natural result of mutual respect, having shared interests or experiences, and often from being together for periods of time, or having similar backgrounds or circumstances. Given the numbers of students in the classroom, the chances of at least one or two becoming my friend would have seemed likely. However good my potential aptitudes (despite actual marks that bounced between “ahead of level” to “needs much improvement”), I was obviously a rather awkward child. Not just a clumsy nine-year old girl lacking the physical graces necessary to playground games, I was also lacking the interpersonal graces necessary among  my ten-year old classmates. (The latter increasingly problematic as social interactions became progressively more complex, more important – and sometimes worse – more subtle.)
Even when noticed, no one knew what invisible differences handicapped my social abilities: Faceblindness (Prosopagnosia) meant I had trouble recognising people, and it always takes me a long time to figure out ways to reliably identify someone. With my ADHD I was prone to interrupting (I still have trouble with this at times). I had trouble discerning between when people where just pausing, done with a sentence, wanting my response, could be interrupted, or were done conversing altogether.
Being autistic meant my conversations lacked the kind of give-and-take where one speaker offers the other person conversational offerings, and provides responses. I did not know I was supposed to express interest in others by learning about their interests and life events, and develop a positive social history by keeping in touch. I’d never been told to do so; like so many things in life that neurotypicals somehow learn naturally, it was part of a vast body of hidden knowledge that I’d never been taught. Moreover, I lacked the intuitive sense for figuring out the scripts were supposed to be for “Barbie Gets Married” and other types of pretend play. Such awkwardness in social pretend play could hide my richly imaginative inner world. I did not know I needed to share my ideas, much less  how to effectively demonstrate them, aside from nascent writing efforts.
As for playing with dolls, rather than endlessly re-dressing or prattling with the figures, I enjoyed arranging the furnishings (especially when scale-accurate). I was much more interested in learning about and discussing nonfiction, and my particular passion that year was the fascinating realm of mysteries, detectives, spies and secret codes. These were not however, the interests of most of the other girls who prattled interminably about horses, pop music, or Betty and Veronica comics. They instead were developing interests in being stewardesses when they grew up, or in reading and endlessly emoting over pre-teen romance stories. My mother complained, “Why can’t you be more normal?” The girls told me that I sounded like the Professor from the Gilligan’s Island television show and laughed at me. I could not figure out why that was not a compliment, as he was the only sensible person in the show!
Once again, I found more pleasure – and the opportunity to recharge my energies for the rest of the school day – by spending all recess on the swings or reading a book. “Oh, you don’t want to do that,” the teacher told me, nudging me away from where I was sitting leaning against a tree trunk and reading my latest book (a library volume on how FBI agents caught counterfeiters) “Go and have fun with the other children.”
The efforts to include me failed on several fronts, but they all had the same ulterior mode of operation. Each of the different manœuvres relied on trying to create friendships by having the previously-bonded group of students “help” the newcomer.
Oh, they tried to help. Two or three girls made me their special case for a couple of weeks, until they tired of the exercise and dropped me from their attentions. They dutifully tried to help me integrate into their little play groups, but it was quickly apparent that I was the unplayable Old Maid in the card deck. Given a choice, eventually no one wanted to add me to their games; my presence was a burden whether on the ball field or the skipping-rope line. The determination of these few students was probably encouraged by the teacher (and other staff members), and undoubtedly they thrived on the social rewards of being good junior helpers who would care for someone needy. If nothing else, my being the inferior “other” just strengthened the existing social bonds between them.
Unfortunately, caring for was not the same thing as caring about. If I complained to the teacher about being put into awkward situations from being pushed into playgroups where neither I nor the children wanted my presence, my concerns and discomfort were dismissed. “You should thank them for doing that for you,” the teacher told me, “They’re letting you play with them. You should appreciate that.” But when I played with them, I was made fun of for my inability to do things the right way. I could not understand why I should express thanks to others for the opportunity to be ridiculed.
Ah, ridicule … I was deficient in any sort of concern for fashion fads, and gave scant thought to my appearance; putting on clean clothes and more or less brushing my hair was adequate in my book. Being tactily defensive, I could not stand to let anyone mess with me. The problem wasn’t who was doing it, but what they were doing. When my mother brushed my hair she would order, “Stop being so squirmy! Why do you have to be so difficult?” If I complained that being handled hurt, she dismissed my protests, “This doesn’t hurt – stop being so whiney!” Even collar tags on store-bought clothes drove me nuts. “Just ignore it,” Grandma told me, “you’re being too sensitive.” (In turn, Grandma could never stand the feel of cotton balls that came in aspirin bottles, but somehow that was different.)
The girls tried to help me look more girly by doing cute things with my hair, but my long, limp tresses were not amenable to being braided or to holding barrettes. The hairdressing felt like an attack upon my body, a strange sort of help-attack. This activity was especially bad because I was no longer even a person but rather a living salon dummy that needed fixing up. There was a strange lack of personal boundaries; they could touch me but I was not allowed to touch them in like manner, which I could not comprehend. Worse, I was not allowed to protest this inequality, and they chided me, “Hush now; hold still and be a good girl. We’re only trying to help you.” And there I was, compelled by everyone important, that I should coöperate and make friends. “Don’t be a cry-baby. You want to be pretty, don’t you?”
Help was apparently something that is done to you and for you; I was the passive recipient for help. They were strangely disempowering, these activities that were ostensibly for my benefit. They certainly did nothing to integrate me into the student body. Instead of improving my own grooming abilities, the whole “fix up Andrea” scene only served to further socially disable me. Demonstrating their superior hairdressing abilities not only affirmed their capacities for following the proper rôles, but also strengthened their memberships in the clique with all that social grooming behavior.
Together, my disinclination for being swayed into primping, and my inability to be socially coerced into behaving normally, had serious affects upon my acceptance into the social milieu of the schoolyard and neighborhood. I was poor at “passing” and although my differences were not obvious at first glance, they eventually piled up like snowflakes obscuring the scenery. People dislike it when someone manages to pass for a while, because the majority then feels that they have been deceived. I was the odd one out, but unlike Rudolph the Red-Nosed Reindeer, did not yet have a special talent that would earn me begrudging tolerance for being useful in my oddity.
Their attempts to normalize me repeatedly failed, and I bore the given responsibility for that failure. It was my fault that I had problems; I just needed to “try harder” to fit in and be a fully functioning member of the scholastic social scene. The hidden promise was that if I managed to overcome whatever obstacles were in my path, I would be accepted. However, the true obstacles I had to overcome were not intrinsic, but due to the others’ lack of acceptance of me as myself. As Charlie Brown lamented in the Valentine’s Day cartoon special: “I know nobody likes me; why do we need a holiday to emphasize that?”
I knew there was something terribly wrong with this entire paradigm, but did not understand it well enough to identify the problem, much less to effectively protest against the dreadfulness of it. Unfortunately, this was only fourth grade. There was much worse bullying and sexual harassment in the years ahead of me.becoming increasingly more complex and more important.

Top Ten Things About Having Faceblindness (Prosopagnosia)

(Not in order of importance)

  1. You save a fortune not buying celebrity magazines because you’ve no idea who’s in all those pictures.
  2. You can go shopping without getting waylaid by chit-chatting with random neighbors/ coworkers/ fellow students/ workers from businesses you patronize. (Especially if you’re also autistic and avoid chit-chat anyway.)
  3. Never having to worry about losing ten pounds for lack of attending school reunions.
  4. You’re a safer driver because you aren’t repeatedly checking and touching up your makeup ( gals, and a few guys, too).
  5. Less clutter around the house without a gazillion photographs of relatives and relations.
  6. You develop an appreciation for science fiction because it’s easier to tell apart the different alien races (the Vulcan from the Ferengi from the Cardassian) than it is all the look-alike “beautiful people” in the soap operas.
  7. No obligation to bother studying the Most Wanted criminal notices tacked up at the post office.
  8. You are more likely to befriend the handicapped or otherwise morphologically unusual people.
  9. Security guards appreciate the fact that you’re a big believer in everyone wearing identity badges.
  10. You could identify familiar people at a masked ball just from their gait, mannerisms or voice.

This is humor; for information about faceblindness, see this following page, plus Web sites listed on the blogroll at left
I’m Strange, You’re A Stranger

Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.
Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.
Amazingly, this is true regardless of what sorts of kids you end up with.
It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.
Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.
There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”
This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?
Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)
Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.
Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.
DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.
(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

All Those Needy, Needy Kids!

From an email some years ago: 

" I have a friend who teaches Kindergarten in the town where I now live. She told me that last September over one half of her incoming Kindergartners had IEPs, with most of those children having an ASD."    

Well of COURSE they now have IEPs to help them with their scholastic issues. Why? Because the schools now offer services.  Why didn't we see kids with these kinds of "needs" in previous decades? Partly because some of those kids didn't even go to regular schools — they were kept at home or in institutions.  Those who did go to regular schools just had to struggle along. They rarely had IEPs and such because their parents didn't – couldn’t – ask for services that simply did not exist.
I had multiple needs. What I got were glasses for nearsightedness, speech therapy, and forced right-handedness. I also got told that my difficulties were due to being lazy, stupid, careless, inattentive, rude, or due to inventing problems just to make life difficult for my mother.
What they "missed" was the ADHD, Auditory Processing Disorder, Asperger’s, prosopagnosia (faceblindness) et cetera. Of course, they didn't really "miss" those things, because they didn't have the screening tools (or even the names) for all those things then.  (In a previous diagnostic incarnation, ADD used to be known as “minimal brain dysfunction”; charming, eh what?)
Because the school districts did not recognise those characteristics as creating problems for me or for other students, they did not have services for such.    That such a large percentage of students are now requiring various accommodations does not mean that we have a greater number of "damaged" children.  Rather, it means that we have more students who are actually getting diagnosed as not being able to learn the same way as most of their peers. 
It also means that we have an educational system that is poorly – too narrowly – designed to teach children.  Too often children are faulted for "being problems" rather than for "having different needs". And quite often it's not necessarily the child that has the problem; it's the way they educational process is set up.   
When people cannot work well in human-designed environments, it is not the fault of the people; it is bad design.