I was in my 20’s before I was diagnosed dyslexic. Hardly anybody knew what dyslexia was when I was a child, so it’s really not that surprising. It came as a great relief to me to learn all the odd experiences had a name.
In the 4th grade, my teacher declared that I was too stupid to educate and should probably be institutionalized. Her evidence was that I couldn’t spell my last name, and I couldn’t read aloud from a book.
My parents were far too upwardly mobile to let that happen — so I got to stay in public school even though I couldn’t tell left from right, I couldn’t tell time, I couldn’t tie my shoes, I could not read more than a few words on any page, and I could only do math problems in my head.
(I did finally learn to tell my left hand from my right hand when I learned to drive because I knew the steering wheel was on the left — from there it was just paying attention.)
I learned to read in college when as a sophomore, I wanted to take a graduate course in Aesthetics. The professor said I could — as long as I kept up with the reading (which was 1 book per week.) I locked myself in my dorm room for a weekend until I learned to track the words across the page with a ruler. And I took the class.
In my 20s, I also learned I was asthmatic. I’d known a boy in the 3rd grade who carried an inhaler with him all the time and I had no idea what it was or what it was for. I, on the other hand, missed weeks of school at a time with bronchitis, tonsillitis, pneumonia, strep throat, sinus infections, and laryngitis. I took so many tetracycline antibiotics before my adult teeth grew in, that my teeth were forever discolored by the drug (now banned for use on children for that very reason.)
By the time i was 21, an ENT at the university diagnosed me with severe asthma, gave me inhalers, drugs and allergy shots — and once again, it’s been a great relief to know what the problem is and give it a name — and not just shoot antibiotics at every little thing.
In my 40s, I learned I had been neglected as a child.
This was a great shock to me.
Like most people, I assumed everybody’s parents were like MY parents — because they were the only example I’d ever had. I was an only child. I did not have a friend until I was in middle school. I never “ran around” with anybody until I was in high school — and by that time, most people my age had little interaction with their parents.
It is easy for me to think back now and see where I missed crucial differences between my house and the 2 or 3 other houses I had knowledge of. At the time, however, it wasn’t obvious, and I had no reason to go looking for differences.
I didn’t know that most people’s parents told them what was expected of them in social situations. I didn’t know that most elementary age children didn’t live in their room all the time they weren’t in school, with hardly any contact with the other people in the house, or with other people in general. I didn’t know that I was not “raised,” but rather that I was ignored and/or tolerated.
It took working with a company that used many professional therapists as consultants before anybody pointed out to me that I was actually neglected in some fairly serious ways as a child. The therapists that pointed this out were very helpful, and more than a little concerned that I didn’t know — but by then, there wasn’t much to do but acknowledge it and move on. Since I wasn’t physically abused or emotionally battered, I’d always told everybody I had a normal, happy childhood — and I’d always believed it.
Finding out that my childhood wasn’t normal, and hardly anybody would call it happy, was a big surprise.
My parents are both dead now. I did not go to either funeral. And over the last 6 months since my mother’s death, some very strange things have happened.
* First — even though I had listened to a lot of music as a teenager and college student, I’d pretty much stopped listening to any music at all during the years of my first marriage and when I was a single mom. I still have a box of vinyl from those school days, but it’s been packed and undisturbed for nearly 20 years. I have a 1911 hand cranked Victrola, from the Edison Machine Shop in New Jersey (it still has its ID Plate) and lots of recorded music for that, but it isn’t the kind of thing you play for hours every day.
Radio is pretty much dead. I’ve had iTunes since the first incarnation — but I rarely used it. I had an iPod, but it was mostly full of recorded books and stories. (see the dyslexia paragraphs above.)
But for nearly 4 months, now, I’ve been buying CDs, adding individual songs from Amazon.com and the iTunes Store — and listening. It’s amazing! I have some favorite singers and songs from over the years and now they’re all on my iPod! And I put an iPod in my Prius so that it plays non-stop when I’m driving. I carry my iPad with its fully loaded iTunes to the kitchen when I cook, to the bathroom when I shower, and by my chair when I’m reading or working on the computer.
I even sing with it!
* Second — after the long, dark summer of 75 x 100 degree or hotter days in Texas, my skin had started to tell the tale. I haven’t worn makeup since the late 1990s because of all my allergies — and my eyes are so sensitive that mascara/eye shadow are gone from my life forever. Additionally, I’d gotten out of the habit of buying and wearing anything on my face when I went through bankruptcy as a single parent. Cosmetics were far down the list of necessities in those days and I just — forgot.
Basically — my skin was red, dry, rough, blotchy, flaky, and itchy. Miserable in every way.
So I started reading about cosmetics to figure out what I needed to do to fix this. If you don’t know — the chemistry of cosmetics has changed radically in the last 15 years.
I know. “Go to the mall,” you say. Talk to those girls at the cosmetics counters.
I forgot to mention that I don’t go to malls because I’m claustrophobic. The crowds and enclosed spaces just do me in…. So instead, I went to Amazon.com and Sephora.com . I read ingredients lists. I read instructions. I read reviews and FAQs. I read sales pitches and advertising slogans.
Then I ordered moisturizer, cleanser, toner, pore-reducing cream, skin-color corrector and concealer, eye-puffiness reducing cream, dark circle corrector, cellular-turnover cream, vitamin rich night cream, SPF20 daytime moisturizer, — plus make up, lip gloss, cheek color, powder, and brightener for eyes. I also got one of those nifty Clarisonic things that vibrates like an electric tooth-brush to clean my face and hopefully not damage my skin any more than it already is.
And I got lots of pretty smelling shower gels and shampoo. Peppermint. Lime. Cinnamon Bun. Fudge. Melon. Berry Cobbler. 😀 It’s just wonderful fun.
And for Christmas — coming in 2 months — I will be getting scented lotions and creams and body wash and perfume that match each other. It’s called “Almond Cookie.” I bought it based on its (scent) ingredient list: bitter almond, sandalwood, and vanilla; and the manufacturer’s commitment to good testing practices, “Whole Foods”-like ingredients, and environmental concerns.
So, 9 weeks into this rediscovery of skin care — my skin is no longer flaky, blotchy, dry, itchy, rough, red, or any of the other awful things that were happening to it. Even the dark circles under my eyes are fading!
I tell you all this silly detail because I’ve only ever worn one kind of perfume of any kind once in my life — and I haven’t had any since the mid 80s. I have avoided perfume — and people who wear it by the bucket — for all my life. I’m allergic to roses, so I don’t do gardens or florists. I avoid weddings that are loaded with flowers. I stay clear of the flowers in hospitals and funerals and in cafes. I avoid cigarette smoke because it sets off my asthma. I don’t do real Christmas trees or wreaths.
I’ve just never been able to do smells like that. I’ve done potpourri and some lightly scented candles, but usually only the ones that smell like spices or fruit.
But now — I’m finding fragrance, cosmetics, and scents very appealing. From Fabreeze to Calvin Klein, and all points in between.
* Third — I’ve started getting my childhood memories back. Things I haven’t thought of for decades are suddenly back. My dog. My room. The alley behind the house where we lived. The bushes in the yard. The fat blades of cool grass. The deep cerulean of the afternoon sky. The path I walked to school every day. The quarter, 2 pennies and a dime I took to buy my school lunch every day. My first phone number: Fleetwood 2-7268. The boy across the street whose parents played bridge every Saturday night with my parents: Bruce Montgomery. The girl whose birthday party I was invited to attend, but failed at so miserably: Lisa Myers. The girl (Marla Mason) whose birthday party invitation said “dress up”-party — so I wore my Sunday dress to a costume party, and so left without leaving my present. All my memories are back. The 4th grade teacher’s name was Betty Wyman.
It’s an outrageously strange experience.
What’s the point of all this? you say.
Let me give you a few more hints.
I only started seeing movies in movie theaters when I was in my 20s (about the time of the original Star Wars, and Heaven Can Wait). Before that when I watched movies in theaters, I was so overwhelmed by the pictures that I did not hear or understand the movie. I completely missed the story EVERY SINGLE TIME. And I love stories. I mean I really LOVE stories. So much that narrative structure is one of the things I do best. But I couldn’t do movies in theaters. Only on television.
An uncle taught me to play penny-ante poker while he was baby sitting me — I was about 8. He taught me the rules. After the first 4-5 hands, I NEVER LOST AGAIN. Remember I said I did all my math in my head? Well I’m also a natural card counter. I constantly calculate odds in my head. The result is, hardly anybody will play poker with me. Or Blackjack. Or monopoly. You get the idea.
I have always been prone to what my mother called “nervousness.” In a crowd or a crowded place, I would get panicky and either shut myself away in closet or a dark place, or wander off locking for some uncrowded quiet spot, or I’d just start yelling. As soon as I could walk this was (evidently) a problem. Wandering off to escape crowds has been one of the constants in my life.
My first ride on the NY Subway lasted only 1 stop because I had one of these “nervous” attacks. Iwas in a cold sweat and shaking from head to toe before I could get out of the car and back onto the platform. It was an irrational panic. It still is, but since about 1985, I’ve called them panic attacks and claustrophobia, because that’s what a doctor called them.
At large family gatherings and holidays, I would shut myself in one of the bedrooms for hours at a time to escape the crowd. — So much so that I was thought of as ill-mannered and rude. After I learned to read, I usually shut myself away in a book — but in one of the crowded rooms. They still thought of me as odd, but not quite so rude.
Lowercase type-set d, b, g, p, and q all looked the same to me in most fonts, and from the Dick-and-Jane readers up until I learned to write in script I had enormous difficulty telling which letter had its tail up or down, left or right, and which letters had “curls” on which side. As a result, from the time I was about 5 or 6, the way I compensated for not being able to read or write was to focus on what the teacher was saying so intensely that I could repeat back everything she/he had said. Hours, days, weeks later (sometimes years later) –whether I understood the words or not — I could repeat back entire conversations, lessons, and lectures..
Eventually this is how my high school algebra teacher realized I really did know and understand algebra — even though I couldn’t pass a written test or do the homework: I would come into the room before class and he caught me repeating everything he’d said in his lectures to other kids in the room who were having trouble. I could tell them how to do the work — I just couldn’t write it or read it. (This also served me well in high school drama class because I always knew all the parts and all the lines after the first run through — even though I was usually the stage manager.)
Got it yet?
I spell melodically. Because remembering what a word looks like doesn’t work so well if left/right and up/down are screwed up — I hear a tone for each letter and I check spelling against the melody of each word’s letters. Of course, it only works when I know the word; and it tends to fail me if I’m tired.
Other than my husband and my dog, I probably don’t hug more than 1 or 2 times a year. If at all. (When my son was a child — I hugged him, but I now know I did not hug as often as most people hug their children.) I don’t resist hugs — I just don’t do it automatically. I have, on occasion, hugged people without being told to or expected to. Granted, this hugging deficiency could just be a result of the being-neglected thing. My parents never hugged me. But — again, I do remember pulling away and running when my grandparents tried. So that’s a tough one. Chicken / egg. Egg / chicken.
6 years ago I taught myself to paint with watercolors. About 4 months in, I got distracted by the pigments used in modern watercolor paints. Up until sometime in the 1990s, watercolors were still the step-child of artistic media because so many of the pigments were “fugitive” — that is, they fade under heat, light, or over time. In the last 20 years, modern chemistry (fueled by the automotive industry) has created pigments that are light-fast, non-toxic, and permanent. And they’re inventing more new pigments every year. So I spent nearly 2 years learning enough about the chemistry of pigments, geology, dirt, clay, rocks, metals, and precious/semi-precious stones — and all the media you mix them with — to make my own paint from scratch.
I even created a few paints that have characteristics unlike any others available anywhere.
I have a very high IQ, and I blew the top off the reasoning section of the old GRE, even though I did not finish the last question because of my slow reading.
Got it yet?
- Easily overwhelmed by high amounts of sensory data.
- Able to do uncommon cognitive tasks at very high-speed.
- High IQ and able to learn directly from books with little or no human interaction.
- Laser focus.
- Need for quiet isolation to re-focus.
- Near eidetic auditory (and sometimes visual) memory.
- Very few social skills (more now after a few decades)
- High reasoning and logic skill.
- High math skill (but not on paper.)
- Able to partition memory.
- Able to block and partition sensory input.
- Only 1 or 2 sensory channels active at a time.
I can’t prove it and I’m not about to go visit a doctor at this point to try — but there is one thing that explains a lof of this weirdness in my life. It’s not just that I’m dyslexic. I must also be high functioning autistic.
This all started coming together about 4 days ago. I told my husband, Jim, what I was thinking and he said he’d been wondering about the same thing for a while. He’s seen the panic. He’s heard all the stories. He knows how my mind works. He probably would never had said anything if I hadn’t put the pieces together for myself.
Because as soon as the thought came together — my identity started to changed.
I’ve never understood most of the social mistakes I’ve made throughout my life. I understand more, now that I’m older, but many were just holes in the picture where information seemed to be missing.
I’ve never understood why someone as (evidently) smart as I am has such trouble with things other people find so easy.
I always accepted the panic, but never knew why or when or how it worked.
I didn’t want to be physically distant — but how not to be was out of reach.
I simply accepted the oddities like the memory and the focus and the math and the weird musical spelling as part of the overall odd package.
But now I’m starting to understand what happened. I couldn’t understand movies in theaters because of the sensory overload. Big screen. Lots of sound. Lots of people. Lots of smells. Then I went to a very small theater with almost nobody in the audience to see a movie by Brian De Palma, called Blowout (it starred John Travolta.) From that point on — I figured out how to adjust my focus to get the story, characters, visuals, music etc — and to simultaneously filter-out the audience and the popcorn.
I’ve never understood the movie problem before. And I’ve never met anybody else who has the same problem, so there was no way to compare it to a similar event.
And I’ve never understood the auditory memory before. Now it starts to make sense.
But it’s changed my identity. In just a few days — I’m not exactly who I was before. I’m still very bright. I have some highly unusual and useful skills. I have the same missing bits.
But almost overnight, I don’t feel guilty for not having learned some of the things other people learned. I don’t feel the same. Hardly anything feels the same.
I didn’t choose this part of my life.
I chose to learn to read rather than miss that Aesthetics class I wanted. I chose to learn the chemistry of making paint. I chose to learn about particle physics. I chose to learn NLP to help fill in some the gaps in my ability to read body language and sensory cues in social interaction. I chose to learn about developmental psychology and narrative structure and Southwestern cooking and how to draw. I chose to learn to play the ocarina and how to brew tea. I chose to learn what art is and how to assess the market value of an antique teddy bear.
But the asthma and the dyslexia and the neglectful parents and this — if it is autism — these I didn’t chose. And the things I didn’t choose, I also didn’t deserve by some fault or bad thing I did. I didn’t earn them through stupidity or carelessness. It’s just a matter of the cards I was dealt.
And that I can live with. I can choose better if I know what’s going on.
But right now RIGHT NOW it’s like every memory and event and emotion — and my whole identity — is re-sorting and re-cataloging based on this one new idea. Testing to see if there is anything in my past that disproves it. Looking for exceptions. Looking for contradictions. Looking for the truth of it — either way. What could a doctor possibly tell me about this? My doctor would ask questions, right? I can ask those same questions. And what difference could it possibly make to a healthcare professional! My health is the same. It’s my identity that’s on the operating table.
What am I ? Am I brilliant, or am I some kind of prodigy or savant with no social skills and a weird memory? Or is this all a result of the neglect? I never hugged or touched or carried on normal conversations because nobody ever taught me how. I couldn’t see movies in theaters because I didn’t know how to act around people, so I paid attentionto the wrong things . I didn’t have ambition in some career because nobody ever talked to me about money and life and working and friends — much less about marriage and children and retirement and happiness.
What am I, now? I knew who I was when I was dyslexic and managed to go to graduate school anyway. I knew who I was when I was neglected, and still managed to find a wonderful marriage to my best and dearest friend.
But who am I if I was really autistic all along? If a few steps off the path I walked could have landed me in an institution, or managed with drugs in some house on some anonymous street? My 4th grade teacher wanted to label me as mentally retarded — and that could have taken me down an entirely different road. An entirely different life.
Who exactly am I if this is true?
I don’t know. At least right now,
I don’t know.
5 days later
I have been going over a variety of incidents from my life. There was a time, after my son had gone away to college and after I had gone through bankruptcy because of a boatload of medical bills — I had decided to take advantage of the imposed “fresh start” and go back to school to get my Ph.D. in the social sciences and anthropology. But the process of applying and being accepted into a graduate program — from retaking the Graduate Records Exam, to turn-key into a new place can be anywhere from 1-2 years.
I went to a local police department in the Dallas area to apply for a position as a 911 operator. (think about what an advantage an auditory memory like mine could be in that kind of job….)
When I got to the testing center/interview, I realized that nobody else in the room was like me. Out of 12 applicants, none of the others had a college education. While many were bilingual, the second language was always Spanish. I was not dressed like them. I was not nervous or afraid — and several of them were.
The testing process began. The officer played a tape of a typical 911 call and then told us to write down all the details we could remember — and I wrote it down word for word.
The officer played us a tape recording of a series of 100 random numbers with the reader announcing one number per second. I wrote them all down.
The officer showed us drawings of rooms, then asked us to identify on a blank piece of paper, where in the drawing specific objects were located. And I did. Over and over again.
The officer read a list of 50 nouns and then asked us to write down as many as we could remember. — you get the idea.
By the time we’d been through all 10 tests, all the other people were looking at me like I was an alien, and the officer giving the test was nearly crying. He even made me do a couple of the tests more than once, because he’d never come across anybody who could do what I was doing.
I told him it was just a trick I’d learned when I was a kid. I told him I really wanted the job and needed the job.
And they told me they couldn’t use me because I was planning on leaving in 2 years and the training took 6 months and was very expensive. I assured them I could learn the material from books and they could just give me the test — a couple of weeks would do it and then I could start right away. But of course that was impossible because the rules said I had to take the training. I asked them if they didn’t think my skills were a good match for the job as a 911 operator — and they said no.
And I didn’t get the job. Actually, I rarely ever got any job I applied for in my life. And I never really understood why. So most of my life I have either taught, written teaching/training materials, written technical documents, or run my little (recently closed) toy store. I learned enough about computers to be able to fill in a lot of the gaps in my work history with temporary work — which often led to longer term computer work. I learned programming from the particle physicists at the Superconducting Super Collider Laboratory. I learned high-end desk-top publishing and technical editing in the Physics Research division of the SSCL. I learned to make specialized fonts, there, as well. I picked up new skills everywhere I went.
But I couldn’t get a job as a 911 operator. Or most of the other jobs I ever applied for. And I never really understood why, except that I didn’t fit their “model.” My social skills and my demeanor weren’t a match. They still aren’t really.
I haven’t had a job since I closed the toy store. And I hid out here at home for 10 months, waiting for my mother to die. She had former art students and church people all over town, and none of them ever knew me or anything about me except what she’d told them, and that I would not visit her in the hospital. It seemed for a while that I couldn’t go to a market or a bank without running into someone who wanted to shame me or save my soul.
I don’t know what to make of the place I am right now in my life. I have no idea what to do with this new bit of information. I don’t know any autistic people. My husband is dyslexic in a way similar to my own dyslexia. My son is neither dyslexic nor asthmatic, (though he does have a genetic tremor that skipped my generation) and at 33, he has 2 masters degrees and a good job he enjoys.
I just don’t know what comes next.
I don’t know what this actually changes — except my own idea of myself. My identity and self is different.