A Valentines Dance

The weather reports are predicting snow. I keep checking my e-mail to see if tonight’s Valentines dance will be canceled but it appears to still be on.

I’ve never been to a Valentines dance before (or any holiday dance for that matter) and I originally wasn’t planning on attending this one but when my volunteer supervisor told me it would be fun and I should come, I decided to think about it. When I received an e-mail saying more volunteers were needed for the dance, I sent a reply saying I would be there.

I won’t have to worry about bringing a date or hooking up with anyone at this dance but I will have to worry about setting up the decorations. This is a worry for me because my fine motor skills are even worse than my social skills and anything that involves work with my hands is unlikely to turn out well.

At least my social skills have improved, even if my fine motor skills haven’t. Sometimes skills atrophy from lack of use and god knows I was quite anti-social in recent years. A year ago I wouldn’t have even considered attending this dance but I wouldn’t have even known about it because I wouldn’t have been volunteering in a special needs expressive arts class at the community recreation center. This dance won’t just include the students from my class but various other people from the special needs community.

My mother drops me off at the recreation center and points out that no one appears to be there. I point out that the dance hasn’t started yet and assure her that the people will come. Upon entering the building, I see the DJs setting up their equipment and the other volunteers decorating the walls with red paper hearts.

“Kira, I’m so glad you came !” Lois, the expressive arts teacher exclaims as she hands me a paper heart and some tape. The other volunteers are hanging the hearts throughout the room, one after the other, making it look easy.  It’s not easy for me though. As I feared, the hearts become useless in my hands. Rolling the tape so that it sticks to both the heart and the wall is too complex a feat for me. Eventually I manage it in a haphazard way, only to be told that I’ve taped the heart to the wrong wall.

“Kira, what grade are you in?” a volunteer asks me.

“Oh, I’m an adult.”

“Oh, I’m sorry.  You look so young.”

Exchanges like this are the story of my life.

The dancers are beginning to arrive. Quentin glides up to me in his wheelchair.

“Kira, you and I have something in common. We both go to Richards University!”

I’m attending Richards University for the third time after dropping out twice previously. This time I’m determined to finish my bachelor’s degree.

Quentin has a job at the Richards school cafeteria. I remember the times I spent eating in the cafeteria with my friends when I first attended the college-and I remember the times I spent eating alone there, feeling self-conscious. I remember when I found out that one of the girls in our friends group had asked the other girls not to invite me to come eat with them because I was “special” and she didn’t like that.

The music starts and the strobe lights are turned on. Glancing out the windows covered in signs that say ‘Happy Valentines Day’, I can see that snow is falling. Some people are dancing, some people are watching others and some are wandering around aimlessly making animal noises. One guy hoots and tears a heart off the wall.  Oh well, if it was one of the hearts applied by me it wouldn’t have lasted long anyway.

I’m one of the people dancing. On this dance floor I have no room for self consciousness.  I have this inability to sit still and am often ”dancing” around, no matter the time or place. This often gets me negative attention or expressions of concern from others who find my movements odd or socially inappropriate. Now that I’m in an environment where it’s considered socially appropriate to wildly move about, I’m not holding back. Several of the dancers are wearing flashing hearts around their necks. I find myself wishing I had one too.

An intermission is called and we head to the kitchen where refreshments are served. As I fill my plate with melon and a pink frosted cupcake, I notice a woman with short brown hair and glasses. She’s not one of the students from the expressive arts class I volunteer in but she’s a familiar face nonetheless.

“Hi, Maren. It’s Kira.  Remember me from Camp Everest?'”

“Camp Everest?”

“Yeah, we were in the same bunk at summer camp back when we were in high school.”

A flash of recognition passes over Maren’s face. She recites the first and last names of our camp counselors.

I remember how outraged I was when I first arrived at Camp Everest and saw that my bunkmates were Maren and people like her.  Yes, I knew this was a camp for disabled kids and I knew that I was disabled but I wasn’t that disabled, not in the way these people were disabled. My bunkmates were weird and you could tell they were disabled just by looking at them. I could pass for normal, at least at first glance. I had my fair share of problems but I was bright and articulate. My bunkmates were intellectually impaired and had trouble speaking in coherent sentences.

However, as time went on, I got over myself. I came to enjoy camp and the company of my bunkmates, especially Maren. I realized that I could roast marshmallows on the campfire, go boating on the lake, hike in the woods and it really didn’t fucking matter if the people I was doing it with were ‘”lower functioning” than I was. So what if the conversations were punctuated with random exclamations, questions and requests to go to Binghamton?  When it came down to it, my bunkmates were much nicer to me and more fun to be around than some of my more” typical” peers.

A few months after camp ended, I received a postcard from Maren.  It read “Hi, Kira. My name is Maren.  What is your mom’s name? When is her birthday ? What is your dad’s name? When is his birthday?….”and on and on until she ran out of room on the postcard mid question.

“Where do you live now? Where does your dad live? Do you drive?….Why don’t you drive….?'” I’m back in the present moment, on the dance floor with Maren. The final question she asks me is what my phone number is. I hesitate for a split second and then give it to her. She enters it in to her phone and then goes to tell one of the DJs that she wants her to be a plumber.

The music has resumed. The snow is picking up. A woman hands me one of those flashing heart necklaces. I pull out my phone and try to coordinate the flash of the camera with the flash of the heart necklace.

The swirl of colorful lights, the falling snowflakes, the rhythm, tempo and lyrics of the music are all coming together to create a dazzling, magical effect that leaves me feeling energized and giddy. A slow song comes on and the DJs instruct everyone to find a partner. I make my way to the other end of the dance floor. Two boys with Down Syndrome are dancing together hand in hand.  Maren has stopped dancing to gaze out in wonder at the rapidly accumulating snow.

“May I have this dance?” I ask Quentin. He smiles and takes my hands in his. I propel his wheelchair towards me and we sway with the music.

“Kira, you should join the special needs choir.”

“I’m not very good at singing.”

“That’s okay. They’d still take you.”

Now the dance is ending and people are leaving. They are thanked for coming and cautioned to be careful in the snow. The volunteers stay behind to take down the decorations. I am unable to get the decorations hanging from the ceiling off of their hooks.

“Kira, did you have a good time?” Lois asks me.

“Yes, it was a lot of fun. I think the snow added to the effect.”

“I was thinking the same thing.”

I reach for my winter coat.

“Thanks for your help. See you on Wednesday.”

“Yeah, I’ll be there.”

I zip up my coat and walk out in to the snowstorm, the flashing heart necklace thumping against my own heart.

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Image may contain: Kira Popescu, smiling, standing and hat



What is an adult?

Last week on Facebook I saw someone expressing the belief that adults who live with their parents or are financially dependent on their parents are not real adults because real adults never ask their parents for money or housing. I hear that sentiment or some variation of it expressed fairly frequently and it stings every time

This time it was expressed by the parent of a child with Nonverbal Learning Disorder (or maybe she’s the parent of an “adult” with NLD-“adult” was the term she used to refer to individuals over the age of 18 who live with or are financially dependent on their parents.)  I said I was glad my own mother didn’t say those kinds of things about me because it was hurtful enough to hear it from a stranger and I could only imagine what it must be like to hear it from your parents.

It was only after I made that statement that I realized it wasn’t true. I know what it’s like to hear that from your parent because for years I lived with a parent who said those kinds of things and worse to me on a daily basis. I can’t tell you how great it is to no longer live with my stepfather and to no longer be constantly subjected to his toxicity. I recently heard second hand that he called me a dirt bag and I just laughed.

If by virtue of living with my mother and not having a job I’m not an adult then what am I? According to my stepfather I’m a child and a parasite. He’s free to think of me in those terms and so is anyone else but I prefer to think of myself as an adult who happens to live with her mother and not have a job.

Shortly after I saw that comment on Facebook I saw a meme asking people not to treat women who don’t have children as though they are children because having a child is not what makes one an adult.

I don’t often feel as though people look down on me for not having kids but that’s because not having kids is the least of my not-adultness.  It’s nice to know that if I ever do live independently and achieve financial independence I’ll face another barrier to being seen as a full- fledged adult.

A few months ago I got in a fight with my mother’s friend as the three of us ate breakfast at a diner.  She said that the volunteer work I was doing was okay but it wasn’t enough because it didn’t add up to eight hours a day. According to her being an adult means working eight hours a day and that your time is never your own.  According to her I don’t want to to become a real adult because I want to have my time to myself. Guilty as charged I guess. Never having your time be your own sounds pretty fucking awful to me.

I get where all those critical people are coming from though. I’ve often thought that I’m not a real adult and that thought has often filled me with sadness and shame.  I’ve often thought that there’s really nothing that separates me from a child aside from my age. I now realize that’s not true. Most children don’t think, write or express themselves like I do. Besides, although ‘childish’ is used as a negative term, I think children get a lot of things right that adults get wrong.

Regardless of what anyone thinks of my life choices or circumstances, legally I am an adult. I am currently unable or unwilling to do a lot of the things I’m legally entitled to do like driving, getting a job or getting a tattoo but there are other things I do take advantage of, like my right to vote.  There has been a push in some places to deprive the developmentally disabled of their right to vote. While I don’t have the kind of developmental disability that would disqualify me from voting, I do not approve of that motion. I also don’t approve of treating developmentally disabled adults as though they’re children in adults’ bodies, even if they are under a legal guardianship. I believe voting is an inalienable right for any U.S.citizen over the age of 18 and perhaps being considered an adult is also an inalienable right for anyone over 18.

I know that the right to be treated with dignity is certainly an inalienable one, that it is not dependent on anything a person does or doesn’t  do. I know that telling an adult that they’re not really an adult as a means of depriving them of dignity is wrong.

Adulthood means different things for different people. Just like marriage isn’t always a sexual monogamous relationship between one man and one woman, adulthood isn’t always getting married, having sex, having children or having a job. Adulthood cannot be mapped out in a neat little chart of developmental milestones that must be met by certain ages or else something is wrong. Adulthood doesn’t have to be a a black and white, all or nothing concept.

Some say adults should never depend on others for money or shelter. I say there’s another, more important thing adults should never depend on others for: their sense of self-worth.




via Daily Prompt: Confess

I must confess that even though I hate it when people claim that someone is too high functioning to be autistic or not autistic enough to count or truly suffer, I am a perpetrator/victim of that kind of thing myself, at least in my own head.

I don’t feel comfortable saying that I’m autistic or have autism. Instead I say I’m on the autism spectrum. What essentially is the difference between being on the autism spectrum and having autism or being autistic? I’m not sure that there is one but somehow saying I’m on the autism spectrum feels safer and more appropriate.

Maybe if I emphasize that autism exists on a spectrum, I’ll protect myself from the judgments and accusations of others. Maybe they’ll realize that autism doesn’t just encompass people who are intellectually impaired, have limited use of language and are smearing feces but people like me who are able to express themselves eloquently, go to college and pass for neurotypical. Maybe I won’t get told that I don’t seem autistic or that it’s impossible for me to have autism.

Maybe if I emphasize that autism exists on a spectrum it will be understood that every autistic person is different, that if you’ve met one person with autism, you’ve met one person with autism. Maybe I won’t be compared to other autistic people, maybe I won’t be told I’m using autism as an excuse.

But if I’m being honest those kinds of judgments and accusations aren’t just coming from other people but from me. They’re directed towards myself and towards others. I don’t voice such opinions about myself very often and I rarely voice such opinions about others on the autism spectrum but they exist in my head. They’re often fleeting thoughts that I challenge, that I push away and that I’m ashamed of but they exist nonetheless.

For as long as I can remember I’ve felt that I was somehow different from most other people and not in the ‘everyone’s special and unique” kind of way. I knew that I had some kind of disability, that I was at some kind of disadvantage, that I was somehow wired differently. Everyone who got to know me realized this but for my entire childhood no one considered that I could be autistic and it never crossed my mind that I could be autistic either.

In those days the general views and perceptions of autism were pretty narrow. Autistic kids were only those kids who didn’t talk, didn’t make eye contact and were entirely off in their own world. There was no way a child who was as verbal and eloquent as I was could be autistic.

Even though the perceptions, classifications and diagnostic criteria have changed since I was a child, even though today plenty of people who express themselves eloquently proudly (or not so proudly) call themselves autistic, I still have trouble shaking the original stereotypical perception of the autistic person. It’s ingrained in my mind and it’s a person that isn’t me. “I’m autistic”, “I have autism”-when I try to make those words flow from my tongue or my fingers I feel like I’m wearing a coat that doesn’t belong to me and I want to take it off.

Logically I really disagree with the notion that ‘high functioning’ and ‘low functioning’  autistic people are so fundamentally different that they have no common ground and should not advocate for one another, that high functioning autistic people never suffer in the way that low functioning autistic people do ( and I have issues with the high functioning and low functioning labels existing in the first place.) I will readily and vociferously argue against anyone who holds such a viewpoint.

And yet… there’s a part of me that feels that viewpoint is right and that I don’t have the right to share the label of autism with someone who is unable to speak, that I haven’t experienced life or suffering in a way that’s comparable to how they’ve experienced it.

I’ve experienced that feeling in the opposite direction too. There have been times when I’ve read the blogs of people who call themselves autistic and thought “Fuck you! How dare you call yourself autistic and claim that you’ve suffered as a result of your autism! You’re not as disabled as I am! You have a job, a partner and kids! I can only dream of having those things!”

The fact that I’ve experienced that thought in both directions-that I’ve felt that I’ve suffered both so much less and so much more than other people who are labeled autistic is perhaps a good argument for why we shouldn’t try to put autistic suffering or any suffering for that matter on some kind of ladder or hierarchy.

Today my mom’s friend told my mother that a friend of hers had a six-year-old grandson that was diagnosed with autism. She said that he flaps and she remembered that I flapped as a child too. A hint, a suggestion, a validation that other people see me as autistic, perhaps a nudge towards feeling comfortable thinking of and referring to myself as autistic.

My mother informed her friend that I still flap. There was a moment of awkward silence on the other end of the phone.

It was a moment where I could have either laughed or cried. I chose to laugh.


Please don’t talk about me like I’m not there

“Is she autistic?” the woman asked my mom’s friend as I walked by.  I suspected she was talking about me but I held out some small hope that she wasn’t.  When my mom’s friend started to reply “She’s my friend Cathy’s daughter and she- ” all doubt was removed. I didn’t hear the rest of what she said because I left the room. I had no desire to listen to  people discussing me and my diagnosis right in front of me as if I couldn’t hear or understand them. If they were going to talk about me as if I wasn’t in the room, then I was going to leave the room. I’m lucky that I had the ability to make an exit.

I’m not sure what tipped this woman off. Maybe my mom’s friend had been talking to her about me. Maybe it was my pacing and flapping that did it. The fact that she hadn’t heard me speak probably heightened her perception of me as seriously disabled. People who hear me speak or read my writing first tend to be surprised to find out that I’m disabled in any way. People who see me pacing and flapping first tend to be surprised to hear me speaking in complete sentences.

This isn’t the first time something like this has happened to me. I’ve had people respond to my flapping, pacing and stereotyped movements by asking another adult who’s with me why I’m doing that and if they’re watching me. They ask the other person that question when I’m within earshot and eyesight. I know this kind of thing happens to other disabled people too. This latest incident happened when I was on vacation. No one ever gets a vacation from their disability. It’s with you 24/7.

Too many people seem to think being autistic or being developmentally or physically disabled in some way is synonymous with being deaf or unable to understand verbal communication. When that belief causes them to talk about me as if I’m not there it makes me feel invisible, inferior and dehumanized. It is rude, insensitive and inconsiderate.

I suppose I could have let that woman know that I heard her and understood what she said. I suppose I could have told her she’d hurt my feelings. That may have challenged the notions she had about me and made her think twice about saying something like that in front of someone else she thought was autistic but it would have been embarrassing for all three of us. I prefer to avoid confrontations with strangers whenever possible.

People with special needs, disabilities or differences are by definition different from ‘typical’ people and require some special treatment but they are people as much as anyone else is. There are some needs, characteristics and feelings that are universal across all humanity.

Regardless of their age, status, neurotype, ability or disability, people universally want to be treated with respect. They want to feel heard and seen by others, to be accepted for who they are, to know that they matter.

There are exceptions to every rule and we aren’t always going to know the right way to deal with everyone but when it comes to human interaction the most categorical and fail-safe rule of all is the golden rule. Do unto others as you would have others do unto you. If you wouldn’t want someone talking about you as if you weren’t there when you’re fully present, don’t do that to anyone else.

Daily Prompt: Mystery

via Daily Prompt: Mystery

To many people I am a mystery. From an early age I was a mystery to my own parents. They tried very hard to solve me. As the detective, the chief witness, the prosecutor and the defense in my case, my mother searched for clues, she did her investigations, she questioned the suspects and she presented the evidence to the professionals. She asked for their help in solving the mystery of me.

I was a difficult case to crack.  There were times when it seemed the mystery of me was close to being solved and times when professionals declared they had solved the mystery but in the end the evidence just didn’t fit together to form a satisfying conclusion.  The poor fine motor and visual spatial skills were offset by the advanced verbal skills. My disinterest in my peers and my apparent inability to form relationships with them were contradicted by the warm, affectionate relationships I had with my family. My failure to pay attention to instructions seemed at odds with my great memory for certain details.  My hand flapping, my failure to make eye contact, my talking to myself, made me seem as though I was off in another world but I could also express myself in a way that showed I was engaged in this world.

My mother was the chief witness in my case but there were other witnesses as well-my other family members, my peers, my teachers, my babysitters. Some of them had convicted me of various crimes in their minds- Of being rude, mean, lazy, indifferent or spoiled-those were the most obvious answers to the mystery of me.  Yet my mom suspected that perhaps I was not guilty of those crimes by reason of disability. The type of disability remained a mystery.

I was sometimes called forth to testify in my own case and solve my own mystery but I remained a mystery even to myself and other people were a mystery to me. I could not tell you why I had no friends or why I flapped my hands. It was a mystery to me why other people did not flap their hands, how they managed to get through life without feeling the urge to do something that was so intrinsic to my being.  It was a mystery to me how my peers seemed to make friends as easily and naturally as I flapped my hands, while I remained friendless. I did not know what I was doing wrong or how I could make things right.

Finally, when I was twelve a doctor seemed to solve the mystery of me. He came up with a diagnosis for me that made sense and matched up with the majority of my symptoms. It was a a little known or recognized diagnosis so it’s no wonder the mystery took so long to solve.

Yet the mystery of me had not been fully solved and my case was far from closed. It was a mystery what had caused my diagnosis and what could be done to help me, why some with my diagnosis fared better than me and others fared worse. Then there were the symptoms of mine that didn’t seem to be accounted for by my diagnosis. Perhaps another diagnosis would fit me better but then there were criteria for that diagnosis that didn’t seem to fit me.

The truth was my mom had given birth to a human being, not a diagnosis and not a mystery novel. My creation had involved the hands of fate, genetics and whatever other forces are out there. I had not been meticulously crafted in the mind of a writer with a clear introduction, plot line and conclusion. I’ve spent my whole life feeling like a square peg in a round hole and there’s no reason to believe any diagnosis could peg me perfectly. I’m a perfectly imperfect person who’s rough around the edges.

The mystery has continued throughout my life and continues to this day. When I started making friends it was a mystery to me why these people liked me so much because years of blame and low self esteem had made me suspect I was inherently unlikable. It was a mystery to me why I made such self destructive decisions. It’s a mystery to me why romantic relationships, employment and independence seem to come so naturally to other people but they just haven’t happened for me.  It’s a mystery whether they ever will happen for me.

It’s a mystery why I can easily tell you the name of the dog of that kid who sat in front of me in seventh grade math class but I can’t remember the password I created yesterday.  It’s a mystery why I take some things so literally and fail to pick up on things that others grasp naturally yet I’m also capable of thinking deeply and symbolically, of picking up on things that others fail to grasp.

It’s a mystery to many people why I flap, pace and jump, why I am the way I am. I can see the look of puzzlement on their faces. Sometimes they ask me about it but even though I’m good with words, it’s a mystery I don’t know how to explain to them.

Some mysteries are not meant to be unraveled or solved. They are meant to be accommodated, accepted and appreciated. I am such a mystery.

On being unemployed and dependent

Society makes it very hard for adults who are unemployed and/or dependent on parents/caregivers to have any self esteem or self worth. If you are an unemployed and /or dependent adult and you have some modicum of self esteem or self worth please tell me how you manage to do it because I still haven’t figured out the secret.

I doubt I’ll get any takers on that though because I doubt it’s possible for someone in my situation to feel good about themselves and I doubt there are many other people in my situation. When I say I’m unemployed I do not mean I am temporarily unemployed or that I got laid off from my last job. I mean I’ve never had paid employment of any kind and my prospects of future employment are dim. I do not mean that in lieu of employment I raise children or go to school full time. I feel sad that I’ll never have children and regretful that I fucked up so much in school.

When I say I live with my parents, I do not mean I am living with them to help take care of them. I mean I am living with them so that they can take care of me. I do not mean that I’m living with my parents temporarily because I’ve hit a rough patch in life and that I’ll be moving out as soon as I get back on my feet. The truth is my whole life has been a rough patch and I’ve never been on my feet.  I do not mean that I’m a young adult who’s learning to adjust to new adulthood. Despite my youthful appearance, I am well in to adulthood.

Because of my joblessness and dependence I have been labeled a leech, a parasite and a spoiled, ungrateful brat. I have been called lazy more times than I can count. I’ve been treated like crap and told that parasitic people don’t deserve to be treated nicely.  I have been referred to as an adjunct. I wasn’t exactly sure what was meant by that last one but the dictionary definition of adjunct is  “a thing added to something else as a supplementary rather than an essential part.”

I can deal with being called lazy because there’s a lot of truth in those accusations but I could really do without the name calling. Even if there is some truth in the comparisons to disgusting blood sucking creatures, they’re very hurtful and not at all helpful.

I try to tell myself that the people who say those kinds of things to me have some serious issues of their own and that those comments are more of a negative reflection on them than on me but I hear that kind of message constantly from all kinds of people and places even if it’s not usually voiced so bluntly, rudely or directly.

Most political discussions I read, hear about or witness eventually  devolve in to complaints about those despicable lazy freeloaders who are mooching off the government rather than getting off their asses and finding jobs. The stereotypical description of the kind of loser you would never want to be or associate with involves a perpetually unemployed 30-year-old virgin who lives in their parents’ basement and plays video games all day.  The fact that I have a room on the second floor and have no interest in video games doesn’t give me much comfort.

I get the message both implicitly and explicitly that since I am unemployed and dependent, I am not a real adult.  I am not entitled to adult privileges. I don’t get a say in my own life. I am powerless and beholden to others. I am a child in an adult’s body.

I am told that I contribute nothing to society and that I should go do something with my life. I try to tell myself that you can contribute to society and do something with your life without getting paid for it but many people do not see contributions as valid unless they are accompanied by a paycheck. It’s as though I must earn money in order to earn dignity.

Kids are often asked what they want to be when they grow up.  ‘Happy’ is not considered to be an acceptable answer. They’re expected to say what career they want to have. When you meet someone new as an adult one of the first questions you’re asked is “What do you do?”  “I eat, sleep, breathe, read and play with my dog” is not considered to be an acceptable answer. You’re expected to say what you do for a job. It feels as though without a job I am considered to do nothing and to be nothing.

Independence and self sufficiency are seen as the ultimate goals of and the be all end all of adulthood. If you fail to achieve those goals you are seen as having failed at adulthood, if not life itself. At best you might get pity from people. More often you will get scorn. One thing you will rarely get is respect.

In addition to not being entitled to dignity or respect, some people seem to think that if you don’t have a job or “earn your keep” you are not entitled to luxuries or pleasures. How dare you eat good food, wear fancy clothes or go on fun vacations!

I am literally financially worthless because I have never earned a single cent in my life but worse than being financially worthless is feeling like because I’m dependent and unemployed I am worthless as a human being.

A few months ago I figured out a way to make a valuable contribution to society without having a job. I would donate blood. As a leech I’d obviously sucked a lot of blood from other people so it was time for me to allow others to suck my blood. I know some view me as unimportant because I don’t have a job but my blood might save the life of someone who has a very important job. My first blood donation went well but by the time I was eligible to donate again I had lost my ID. When I set out to get a replacement ID I discovered that you are now required to present bills addressed to you as proof of your identity. Since I am not financially independent and do not live on my own, I do not have any bills addressed to me. It felt like yet another way society has of telling me that without having a job and without being independent, I do not have a valid identity.

I’m sure a lot of people are thinking “Why don’t you just get a job?” The answer to that question is a story for another blog.

The Problem with Being Smart and Stupid at the Same Time

I have been told many times in my life by many people that I am very smart. Telling someone that they’re smart is generally considered to be one of the highest compliments you can pay them and usually when people tell me that I’m smart they do just mean it as a compliment but sometimes there’s more to it than that. Sometimes the declaration that I am smart contains a certain subtext or is followed by certain other declarations about me.

It goes something like this: You are too smart to have a learning disability. You are too smart to have a developmental disability. You are too smart to behave in the manner that you do. You are too smart to have the kinds of problems that you do.You are too smart to struggle with such basic skills. You are too smart to require the kind of help you are requesting. You are lazy, you are rude, you are not trying hard enough. You are mistaken about your diagnosis, you are using your disability as an excuse.

How does one define intelligence?  A classic measurement of intelligence is the IQ test. This test is divided in to a verbal IQ and a performance IQ. Usually one’s verbal IQ score and one’s performance IQ are similar. A 10 point difference between one’s verbal IQ and performance IQ is considered to be significant. I have a 60 point difference between my verbal IQ and my performance IQ (the verbal IQ is the one that’s much higher.) The neurologist who tested me said it was one of the largest discrepancies he had ever seen and because it was so large giving me an overall IQ score was essentially meaningless.

The discrepancy between my verbal and performance IQ as well as the struggles I’d faced throughout my life led to me being diagnosed with Nonverbal Learning Disorder. NLD is characterized by deficits in visual spatial skills, motor skills and social skills. It is also characterized by excellent memory, vocabulary and verbal skills.

I am someone who speaks and writes eloquently. I communicate insightful ideas in an articulate manner, I use big words and I spell those words correctly. I remember pretty much everything that was ever said to me and that ever happened to me. This leads many people to conclude that I am smart. They are not wrong about that but there’s also another side of me.

I am also someone who has never held a job or lived on my own. I am someone who struggles with tasks such as brushing my teeth,washing my hair and opening cans. I am someone who flaps my hands, jumps up and down and paces around in circles. The people who hear me speak or write first are often surprised to find out I’m disabled. The people who see me pacing around in circles or struggling with basic tasks first seem surprised when I start speaking in full sentences. The people who have seen me do all those things often have trouble reconciling those two sides of me. They often make false assumptions and come to false conclusions about me (see paragraph 2.)

You can’t entirely blame people for their false assumptions and conclusions. They work within their own context, draw on their own experiences and believe the things they’ve been conditioned to believe. The child who reads and writes well above her grade level is not consistent with the general perception of a child with a learning disability. It can be hard to understand why someone who expresses astonishing social insights for someone their age cannot maintain friendships with their peers. It can be hard to understand why someone who can produce the most brilliant essays, make the wittiest comments and win every argument cannot tie their shoes, button their pants or write legibly. It is easy and convenient to assume that if one can succeed at seemingly complex tasks, their failure to perform seemingly basic tasks is not due to any kind of lack of ability or disability but to laziness, rudeness, lack of caring or character flaws.

Not many people are knowledgeable about NLD.  Many people in the psychology and education fields have never heard of it. It’s not in the DSM and there’s debate over whether or not it’s a valid diagnostic category. When people hear the term Nonverbal Learning Disability, they tend to assume it means you cannot talk when on the contrary many people with NLD are very verbal.

Nonverbal refers to the fact that NLD does not impair one’s verbal abilities but one’s ability to process nonverbal information. The majority of learning disabilities are language based and when some people see that you excel at language they act as though NLD stands for Not Learning Disabled. Nonverbal learning disabilities are significantly more debilitating than language based learning disabilities but there is less awareness of them and less services dedicated to helping those affected by them. I struggled in public school and was put in a school for the learning disabled for a trial period but my parents were told that since their school dealt with kids who had language based disabilities there wasn’t much they could do for me. When I applied to colleges I got in to most of the colleges I applied to but I got rejected by all of the learning disability programs I applied to. The rejection letters essentially said “Sorry, you are not eligible for our services because NLD is not a real learning disability.”

Before I received my NLD diagnosis at age 12 a few other diagnoses were considered for me. Autism was not one of them. In those days autism diagnoses were mostly reserved for the more severely impaired individuals who were greatly limited in their ability to use language. These days autism is thought of more as a spectrum disorder with varying symptoms and levels of severity. My stereotyped movements are not generally considered to be a symptom of NLD but they are considered to be a symptom of autism.

Some consider NLD to be an autism spectrum disorder, others don’t.The Division of Developmental Disabilities considers NLD to be “just a learning disability” and thus I am ineligible for disability payments from them unless I get tested and get an official autism diagnosis. That test costs a few thousand dollars.

Now I tend to tell people I’m on the autism spectrum. At least most people are familiar with autism, are inclined to take it seriously and have some knowledge about it. The problem is a lot of people do not know as much about autism as they think they do. Some people seem to think that knowing one or two people on the autism spectrum makes them an expert on autism but as the director of a program for young adults on the autism spectrum that I was in said “If you’ve met one person with autism, you’ve met one person with autism.”

I’ve had people insult me by telling me they know people on the autism spectrum who do not act like me so therefore I must be using my disability as an excuse and I’ve had people “compliment” me by telling me I don’t seem autistic. Accusing someone of using their disability as an excuse (especially if it’s a disability you do not have and are not well informed about) is just rude and presumptuous. “You don’t seem autistic”is usually well intentioned. A lot of neurotypical people seem to think it ranks right up there with “You’re so smart” as one of the highest compliments you can possibly pay someone on the autism spectrum but I’ve yet to encounter anyone on the autism spectrum who actually considers it to be a compliment.

A woman once came up to me to tell me that she’d heard I was on the autism spectrum and she’d been observing me for signs of autism but had not seen any. I was tempted to start shouting “Wapner, Wapner, three minutes to Wapner!” (It’s a Rainman reference) but I restrained myself.

Then there was the time I was at the gym with a group of other young adults on the autism spectrum. A guy who frequented the gym came up to me and started making conversation.  He talked about that group of people he saw me with. He said he’d seen some of them engage in odd movements and behaviors. This guy had caught me at a time when I happened to be sitting still and now that I was talking to him I was making an effort to stay still and “act normal” but if he’d watched me long enough he would have seen me engaging in “weird” behaviors similar to those of the peers I went to the gym with. “So, do you work with those people?'” he asked me. I’ll never forget the look on his face when I replied “No, I’m one of them.”

A lot of people expect and want there to be a sharper delineation between smart and stupid, weird and normal, us and them. The truth is that sometimes “weird” people are a lot like “normal”people in some ways and sometimes people are smart and stupid at the same time (please know that I’m using the word stupid in a tongue in cheek manner in much the same way I use the word crazy. I do not think having a learning or developmental disability equates to being stupid.)  That person sitting next to you in your college class who aced the test that the rest of the class bombed, wrote one of the best essays the professor has ever seen, and makes intelligent contributions to class discussions might be the same person who struggles to dress herself, prepare simple meals for herself and make small talk with her peers.

The truth is that sometimes people who appear brilliant and very competent in some ways, struggle in other ways and it’s not due to laziness, rudeness or character flaws. It’s due to a disability, a disability that is often not visible and is not very well known but is very real and very debilitating.

I outlined the three categories of dysfunction in NLD but there is a fourth category, one that is not an official category but might as well be,considering how common it is among those with NLD. People with NLD are prone to depression, anxiety, low self esteem and suicide. I’ve never attempted suicide (although I’ve certainly thought about it) but I can check off all those other boxes. There are organic neurological reasons that people with NLD are prone to psychopathology but a lot of it has to do with their life experiences and the way society tends to respond to them.

Misunderstood is a word frequently associated with NLD. There’s a popular article on NLD called The Misunderstood Child. In my online NLD support group we were asked to sum up NLD in one sentence. The person who summed it up best said “A lifetime of misunderstandings”.

The misunderstandings go both ways. You misunderstand other people all the time and other people misunderstand you all the time. It’s easy to internalize all the messages you get that you are lazy, rude, uncaring, weird, abnormal, defective, etc,  Since NLD often goes unrecognized and undiagnosed, a lot of people with NLD don’t know they have it. Since their intelligence and assets can in some ways mask and compensate for their deficits, there tends to be denial that there is a serious problem. Early intervention tends to be critical in disorders such as NLD  but unfortunately the window for early intervention tends to coincide with that time period where parents’ concerns about their child are dismissed. They’re told that the kid is just a little immature, a little behind but since they’re so smart they’re going to be just fine. Unfortunately those kinds of disorders don’t tend to get better with age. They tend to get worse.

It almost seems as though emotional problems are inevitable with NLD and as though having NLD is incompatible with having high self esteem. Your verbal intelligence does tend to be a source of self esteem and you may not want to tell anyone you have a disability but when it becomes a choice between having people make false negative assumptions about you and revealing that you have a disability, revealing that you have a disability seems like the more attractive option. You may not want any special help but when it becomes a choice between failing miserably and having a breakdown or revealing that you have a disability in order to get the help you need, getting the help you need is the more attractive option. When the validity of your struggles and your entitlement to help are denied based on your high verbal intelligence, you find yourself in this bizarre position of having your intelligence turned in to a weapon to be used against you and of feeling like you need to convince people that you’re not quite as competent as you seem.

Of course it’s also not fun when people assume you’re more impaired than you are and announcing your own disability to the world is one thing while having someone else announce it to the world for you is quite another thing.  A few years ago my beloved dog died suddenly in a tragic accident. The next day when I went on the train I thew up as a result of the grief I was experiencing. I know that the woman who announced to the train “There’s a young lady with special needs who’s sick and needs assistance”had good intentions but dear God, lady, did you have to make one of the worst days of my life even worse than it already was by publicly referring to me as  ‘special needs’? I wondered what exactly tipped her off that I had special needs and if she had any idea of the nature of my special needs. I wondered if she thought I was intellectually impaired.

I’ve said that the term “neurotypical privilege” needs to be more of a thing. I read a ‘neurotypical privilege checklist’ blog and the points that most resonated with me were “I am not expected to alter or suppress my natural ways of moving, interacting, or expressing emotion in most circumstances’ and ‘If I fail to alter or suppress my natural ways of moving, interacting, or expressing emotion, I do not fear public ridicule or exclusion because of this.’ Replace the words ‘alter and suppress’ with the word ‘explain’ and it’s still true.  Telling myself that all those ‘Are you okay?/ Why are you moving like that?’ questions I get when I go out in public are well intentioned doesn’t do much to ameliorate the discomfort they make me feel.

Despite my verbal prowess and the way I have with words, I cannot give anyone a long, through, eloquent explanation as to why I move, interact and express emotion in the ways that I do nor can I give a detailed explanation as to why I struggle in the ways that I do. If “I have a disability” won’t suffice as an answer, the best I can come up with is “Because my brain is wired differently than yours is” (and sometimes if the question is being asked in a rude or aggressive manner I feel like tacking on “Now please fuck off and leave me alone.”) No one knows for sure what causes NLD but in some cases it seems to be associated with brain damage/trauma. I did not experience any clearly identifiable brain injury or trauma in my life so maybe I just got lucky.

The terms high functioning autism and low functioning autism are controversial. What qualifies as high functioning vs low functioning is subjective, some people are high functioning is some areas but low functioning in others and the degree to which an individual is functioning in a given area can depend on the day. If high functioning is defined as having good verbal skills then I’m pretty high functioning. However, there are people with severely impaired verbal skills who are able to hold jobs whereas I have never been able to do that so in that respect those ‘low functioning’ people are higher functioning than I am.

There’s this unfortunate misconception among some that high functioning autism is not real autism. It’s just autism lite, the diet coke of autism. It just means being a little quirky and maybe having a really amazing special skill like being able to mentally calculate the first 1000 digits of pi. As long as you can talk and you aren’t smearing feces everywhere, it’s all good.

There’s no point in comparing high functioning and low functioning autism as if they’re competing against each other in the suffering Olympics but suffice it to say, there is plenty of suffering, struggle and hardship associated with high functioning autism. Yes, the ability to verbalize ones’ thoughts and feelings does serve as a protective factor against some of the emotional pain experienced by those on the lower functioning end of the autism spectrum who are unable to do so but it also comes at a price. If you can ‘pass for neurotypical’ in some areas some people expect you to pass for neurotypical in all areas and that’s just not possible. When they see that you have not only adequate but superior language skills, that you express yourself not just adequately but brilliantly, bring on the perplexity, the bafflement, the inability to understand this paradox of a person who seems so smart but struggles with the simple tasks most people take for granted. Follow it up with the accusations of being lazy, rude, spoiled, uncaring, of using one’s disability as an excuse, of being mistaken about ones’ diagnosis.

The accounts of real and hypothetical children with NLD are pretty heartbreaking to read.  They tell the story of a kid who’s very bright and develops an impressive vocabulary at an early age but who’s also physically and socially awkward. They tell of a kid who reads well above his grade level but who struggles to write his name, use scissors and draw simple shapes. They tell of a kid who impresses all the adults around him with his verbal intelligence but who cannot make friends with his peers. They tell of a kid who’s repeatedly criticized, picked on and bullied for reasons he does not understand and for behaviors he cannot help. They tell of a kid who becomes increasingly depressed, isolated and overwhelmed as the demands placed on him become increasingly complex. They tell of a kid who is left with little hope that things will ever get better, who has come to the conclusion that he lives in a world that is not structured to accommodate him.

If I feel sorry for myself for having a disability for too long, I start hating myself for indulging in self pity and sometimes I find myself annoyed by the ways in which other adults with NLD complain about their problems but when I read about the struggles children with NLD face (and most of the writing on learning disabilities focuses on children) I feel nothing but sadness and compassion for them. I struggled a lot as a child and I know I had it much easier than many other kids on the spectrum have it. People with NLD are often perceived as lacking compassion but that’s usually just another way in which they are misunderstood. Sometimes it’s much easier for them to be compassionate towards others than towards themselves.

I saw a long list of strategies for helping kids with NLD. The bottom of the list said “And most importantly: COMPASSION.” That is really what it comes down to in the end.  A lot of people are not compassionate towards those with NLD because they don’t understand the disorder and once they gain a greater understanding of it they become more compassionate. The state of the general knowledge and understanding of it as well as the support services available is still pretty abysmal but it’s better than it was years ago (one of those college disability support programs that rejected me on the basis that NLD was not a real learning disability now has a disability support program specifically dedicated to NLD and autism spectrum disorders.)  Unfortunately there are some people who just don’t want to be compassionate and you cannot force them to be. There are assholes who will go out of their way to make a person with NLD feel like shit and there are angels that will go out of their way to help them. I’ve encountered my fair share of both.

No one with NLD can expect to have an easy life but it’s not all pain and suffering. The verbal prowess that comes with NLD is your gift, your saving grace and your rallying cry  even when it does become a source of frustration in comparison to your abilities in other areas. It would be nice if I could be talented in all areas of life but given the choice I’d rather have excellent verbal skills and crappy fine motor skills than vice versa. At least having good verbal skills means that when someone decides to insult me for my impaired skills in other areas of life, I can deliver a clever comeback (even if it’s only in my head and after the fact.) That inability to tell or tolerate a social lie, which can spell disaster in certain social situations, also translates to a certain honesty, genuineness and integrity that you don’t see in many people and that even neurotypicals can appreciate.

Some say that NLD involves trouble understanding humor and that people with NLD tend to lack a sense of humor. People are people and not diagnoses though so I can say that sense of humor has never been a problem for me (some of the funniest people I’ve known have been on the autism spectrum.). And thank goodness for that because if I wasn’t able to have a sense of humor about all my struggles and painful experiences, I’d be even more of an emotional wreck than I already am. I’m also thinking my sense of humor is the only reason certain people like me, are willing to put up with me or have refrained from killing me.

I do struggle with certain social skills and as a child I struggled with making friends but the ability to make and keep friends was a skill I was able to develop with age. Once again, thank goodness for that because without friends I’m even more of an emotional wreck. I’ll probably never be in the position of hiring someone for a job but when it comes to making friends I’ve learned not to discriminate based on age, sex, race, religion, disability or species for that matter. When it can be so hard to find a friend who accepts you for who you are there’s no point in limiting your pool even further. I’ve learned to be accepting and forgiving and not to judge anyone based on what other people think. God knows there are plenty of things I get judged for and plenty of people have expressed ideas about me that are not true, kind or necessary.

Sometimes I feel as though I live on an entirely different plane of existence than my neurotypical friends and peers. There have been times when that chasm between us has felt so deep and so unbridgeable, when I’ve felt so sure that they would judge me and be disappointed in me, that I’ve withdrawn in shame. There have been times when I’ve felt so sure that they did not understand me, that they could not relate to me, that I’ve lashed out in frustration. Yet there have always been people who love me unconditionally, who are willing to forgive, to try to understand, to reach across that chasm. And sometimes that chasm isn’t quite as deep as it seems.

The insults/complisults/ expressions of concern I get as a result of my disability tend to fall in to three main categories. 1. It’s pointed out to me that I don’t act normal 2. I’m told that it’s a shame that my life is the way it is because I’m so smart and have so much potential. 3. I’m compared to a child.

No one needs to point out to me that I’m not normal. I figured that out a very long time ago. Others have tried to comfort me by telling me that normal is relative and normal is boring. I have mixed feelings about that. On the one hand it seems like a rather dismissive thing to say to anyone with a developmental disability because there are absolutely societal standards of normal and they absolutely tend to deviate from those standards in a way that is generally considered to be unacceptable. Plus many people would rather be boring than have to suffer. On the other hand, I can appreciate the truth in that statement. A person on the autism spectrum is behaving in a way that is normal for the brain that they have. They just happen to have a type of brain that is in the minority. If they started a community where the majority of people had autism they could lecture all those neurotypical people about how abnormal they are. And I do appreciate being interesting even when it comes with suffering.

Being told that it’s a shame that I’ve wasted my potential when I’m so smart? Oy, that’s a tough one. It’s the kind of thing that makes me want to curl up in a ball and cry forever. It causes me a lot of shame, sadness and guilt. I know that in some peoples’ eyes (and often in my eyes as well) I’m a loser, a failure, a parasite and a spoiled brat. I look at some of the people who are wildly successful and I know that in some ways I’m much smarter than they are so I should be just as successful but I also know that in other ways I’m much stupider than they are.

Yes, the past is the past and every day is a new day but the past affects the future. There are bridges that have been burned, permanent self inflicted emotional scars that have been left on me and years of my life I will never get back. Can I make myself the helpless victim of a disability and thus validate the people who accuse me of using it as an excuse? From the tangled knot of the past can I unweave the biology that was my destiny from the bad choices that I was ultimately responsible for?  Was I in a world that wasn’t structured to accommodate me and if I’d gotten more support would I have made different choices? Some of my experiences are unique to me and my disability but I know that wondering about and wanting to change the unchangeable past is universal across all humanity .

Being compared to a child is hurtful because I know there’s a lot of truth in those comparisons but I also find humor in them. Honestly when I get compared to a teenager I almost take it as a compliment because I’m often compared to a 9-year-old, a 5-year-old or a 2-year-old. Yes, I am rather child like in my emotional outbursts, my inability to financially support myself or live on my own, to walk and chew gum at the same time, to sit still, to pay attention to things, to brush my teeth in a way that will prevent them from falling out, to shower without flooding the floor, to get the shampoo out of my hair, to keep my room clean, to button my shirt, to go a day without tripping over or bumping in to something, to eat without getting food everywhere but when’s the last time you saw a five-year-old write a blog like this?


























































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































My Latest Facebook Status

The one good thing about Facebook’s news feed turning in to clickbait is that I no longer have to look at inspiration porn news stories that objectify people with disabilities in order to show the extreme kindness of the person who treated them in a patronizing manner. Unfortunately there are plenty of those stories all over the rest of the internet.

I’m sure I’d be preaching to the choir on my friends list so this public service announcement is going public:

People with disabilities are capable of Googling themselves. People with disabilities are capable of feeling hurt, angry and embarrassed.

People with disabilities do not exist to inspire “normal” people with all the obstacles and challenges they’ve faced and overcome. People with disabilities do not exist so that when they’re treated with basic human decency “normal” people can feel all warm and fuzzy about it.

Of course you should be kind to people with disabilities, just like you should be kind to all people but allow me to share my perspective on what kindness is and what kindness isn’t.

Kindness is not allowing that disabled boy on the other team to score a winning basket so that you can be hailed as a hero on social media. Kindness is not laughing about the way that disabled woman decorated your cake and upon being informed that the girl has a disability, telling Facebook all about how you were nice enough to accept the cake and thank the woman for doing her job. Kindness is not telling Yahoo News all about how you took the disabled girl to prom when no one else would.

Kindness would be giving the disabled boy on the other team a high five and congratulating him on a game well played, regardless of whether or not he won or lost. Kindness would be genuinely thanking that disabled woman for decorating your cake, giving her a warm smile and wishing her a good day. Kindness would be taking the time to get to know that disabled girl you brought to prom, showing an interest in her as a person, not just her disability,

Kindness would be acknowledging that that girl made your night as special as you made hers, that you had a good time with her. It’s not just something you would have to say just to be nice either.

Disabled people are capable of being kind, intelligent, funny and interesting. You can enjoy spending time with them because they’re fun to be around, not just because you get a feeling of gratification out of being “nice.”

If you do all those things you may not get a bunch of Facebook likes and your name may not appear on Yahoo News but you will be doing something that is truly kind.