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?