Archive for the ‘childhood’ Category

The Challenge of Identifying Emotions

July 28, 2009

Lately I’ve realized that many times I struggle to identify my own feelings, and even break them down.  If I could figure out a) what my feelings are, b) why I have them, and c) how to deal with a problem, I’d feel more in control of the things that happen in social situations.

Unfortunately, feelings happen very quickly, often before I understand why I’m having them.  Sometimes I catch on to other people’s feelings before I identify my own (a finding in contrast to much of the ASD literature).  I have an easier time picking up on other people’s feelings (though I’m not always right–far from it) because I see it as a more pressing requirement of social interaction (v. my feelings are always there whether I’m alone or in a group, and I tend to put identifying them on hold in favor of all else that’s going on; it’s totally a damage control thing).

In both instances (self or group), however, NLD skews and rearranges my perceptions (i.e., I tend to get less than 40% on the facial recognition tests).  It’s very frustrating, and explains why I like alone time best.  Here are some things that might help:

-“I feel” statements–every day in the home

-Ask child how he/she feels about a situation, and teach him/her names of major feelings

-Teach that there are degrees of feelings, and that they often occur with other feelings

-Teach that it’s OK to have feelings, but that we must deal with them in acceptable ways

A quick list of emotions, compiled by two emotional theorists, appears in this Wiki entry: http://en.wikipedia.org/wiki/List_of_emotions.

I’m going to look at it and write more later.  I hope to find some interventions that help adults as well.

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Trouble Making Eye Contact Is Not Avoidant

July 18, 2009

I’ve been reading about the chronic trouble many people (me included) with NLD have making eye contact.  I attempt to clear up some myths here, with quotes and paraphrases in purple and my comments in blue:

1) According to O.A.S.I.S. (Online Asperger Information and Support: http://www.udel.edu/bkirby/asperger/teachers_guide.html) educator and AS parent Elly Tucker, “don’t assume that because a child is not looking at you, he is not hearing you . . . she may hear and understand you better if not forced to look directly at your eyes.” That’s totally true.  I’m still listening even though my gaze is inconsistent.

2) Tucker also points out that sometimes “forcing eye contact breaks [a person’s] concentration.” A reminder like this can also feel disciplinary or hostile, even if the person is just trying to clarify something.  Many times, people with NLD and related conditions have grown up being harshly criticized.  With less control over our readings of and responses to social stimuli, it makes sense that sometimes we have what seem like over-sensitive reactions.  Sometimes semi-criticism is snuck into a conversation, though, so many times we’re not totally misreading, and more processing things in a different order (i.e., using our left-hemisphere strengths).

3) In 2006, a Cambridge study (http://eideneurolearningblog.blogspot.com/2006_08_01_archive.html) focused on the cognitive activities of people when they make eye contact v. when they don’t.  They believe that when people look away, their brains are processing complex stimuli that requires full concentration (i.e., situations that cause social anxiety and/or require memory recall). Often children need some time adjust to a new environment (even the chair for AS subjects interfered with Stroop attention) and we need to remember to give them that time.” (A Stroop test measures how long a subject takes to react to stimuli.)

4) In an excellent short essay (http://specialchildren.about.com/od/aspergersyndrome/a/eyecontact.htm), Luke Jackson, a boy with AS, describes why eye contact is so challenging: “Sometimes it is too hard to concentrate on listening and looking at the same time.This happens to me every time I talk to someone.  Inevitably.  I try looking at their noses or mouths, but am distracted by all else–arching eyebrows, eye blinks, shifting pupils, questions being asked of me, whose turn it is to speak, et cetera.  Social dynamics are really, really hard.

Things that may help:

-Sharing that we have NLD and how we experience it in written, customized notes.

-Just telling someone beforehand that eye contact is really difficult, but we’re still listening even if our gazes shift.

-Going to places ahead of time.

-Using written communication whenever we can.

-Making a polite yet very pointed case for being able to use our talents, not be lumped into activities that capitalize on our weaknesses.


The “What’s wrong with you?” Look

July 16, 2009

Every time I go somewhere, I get “the look” from people, and it’s not flattering.  “The look” is that expression of faux concern, that unwanted curiosity without compassion, that pretending-to-be-clinical-as-an-excuse-to-not-mind-one’s-own-business, that question of why this person with the unsteady appearance is out in the world.

I get “the look” many times–when I’m at the grocery store maneuvering a heavy basket and grocery bags.  It’s a “what are you doing here” type of a look.  It’s a look that reminds me of what would happen if you somehow combined Nell with Bridget Jones.

Like Nell, I have struggled both with social isolation and a feeling of being both very intelligent and radically different, in a way that causes people some unease.  People get nervous because NLD causes me to not fit in precisely with social grooves.  I’m more on the periphery, more of a wallflower observer.  I’ve been asked several times if I’m blind.  I have excellent vision, but my eye contact is fleeting and inconsistent.  In an interview, Jodie Foster observes that “it’s not safe to be in the world when you’re like Nell.”  This is true, and I’d add that when you have attributes of these qualities, albeit in milder forms, people are extremely judgmental and lacking in understanding.

Like Bridget Jones, I don’t stand out as much as Nell would, but I feel out of place anytime I’m not home alone.  Anxiety builds up when I go places or deal with people.  If I ever have a relationship, if finances allow, I would like to own my own property so I have a place to write, be alone, think, and relax.  Alone time is not pathological; it’s like oxygen, especially given how much resistance society has towards socially-impacting differences and appearances.

Bridget Jones struggles to say the right things at the right times and blend into social scenes.  She is also susceptible–in a more extreme way than people without major, ongoing social stress–to people trying to impose their opinions on her about what she should do.  And she experiences both internal and external self-consciousness.  I totally identify with that.  Sometimes my external self-consciousness looks worse than what I feel, which is very disconcerting and no fun for other people, either.

I get why people sometimes stare, but it’s rather gauche and doesn’t help me feel more acclimatized to social settings.  In fact, I feel unwelcome and alienated when I sense that people think there’s something wrong with me.  When I was in first grade, kids liked playing Helen Keller.  I didn’t experience being Helen as just a game, however, I really felt kind of like that–isolatd, treated differently, seen by others as not having fully-working senses–all the time, like my eyes were squeezed half-shut as people rushed past, grabbed my hands, and walked me to the water pump.

Or when we played “light as a feather, stiff as a board.”  In that game, I felt also felt different, not just for the moment, but long after the game ended.  When children become adults who can no longer chant folklore, the inquiry persists in stares, in the silently-taunting “what’s wrong with you” look.  I wish people would get to know me, and other people with NLD and similar conditions, and our talents, rather than making these unqualified judgments.

NLD: A Math-Impacting Learning Disability

July 9, 2009

As many people already know, NLD causes difficulties learning math.  Sometimes it’s impossible.  I was diagnosed late and raised by math-loving parents who assumed that because I am musically talented, I must automatically be good at all my academic subjects.  What a myth. They said I had an attitude problem when I didn’t get algebra the first time around.

Before that, I struggled with arithmetic, pre-algebra, and geometry.  I ended up repeating algebra three times (both due to not getting it the first time and needing to review the skills because I don’t practice math much, just as someone with reading disabilities tends not to read as much/often as someone without them).  Then I took a very watered-down basic geometry class so I would be accepted to the university I worked so hard to transfer to (I wanted to attend an excellent school because I’ve spent so many years needing to prove my intelligence and having the degree on paper sometimes helps, but not as often as one could wish; plus I’m not a school-name-dropper; if I’d felt like my intelligence was credited throughout my life, I wouldn’t be so obsessed with being admitted to the best schools, but that’s another topic).

Then I took Algebra II, which went fine because it’s so tied into Algebra I, and my professor was very good at explaining things in easy-to-understand ways.  Unfortunately, now my future department wants all students to take a statistics course.  I’ve dropped the class twice because I don’t understand things fast enough, or at all.  Many times people think not getting math is a decision, as if we choose to dislike it.  This isn’t true.

When someone doesn’t understand a basic academic subject, it’s painful.  We would like nothing more than to confidently write problems on the chalk board, but NLD makes this experience unlikely.  My former professor was walking around looking at our notes.  When he looked at mine, he stepped back, as if to say “what the heck is this.”  Sigh.  I tried to get good at math many times, but it’s never worked out.  I hope my department will approve a course substitution.

Too often, math-disability literature doesn’t focus on the college years.  This is a big problem, since nearly all colleges require students to take some math or math-related courses.  I hope that talking about this helps someone else.  I’ll let you know what happens with my department.  There have been worse problems in life, and this one ought to be fixable.  Let’s hope so.  Thanks for reading about this, and if you have ideas, please comment.  More later.

Everyone’s Talking about Michael Jackson . . .

July 2, 2009

I don’t normally blog about news events, but I feel compelled to state the grief I feel over Michael Jackson’s death.  Namely because he was “different” from the cultural norms, and treated negatively as a result.  This issue is a complicated one, and I don’t deny that he made serious mistakes at times.  Still, the pain of being markedly different lasts throughout one’s life, particularly if one has the social awareness level to know about, but not be able to change these qualities.  They make us ourselves, but not always in ways that are culturally approved.  I think that’s one reason so many people identify with his music–the agony it exposes, in part because of how challenging it is to be “different.”  To be treated differently.  And the relationship this has to self-destruction, or at the very least, self-destructive feelings.

Before I was diagnosed, I was seriously depressed.  Even now, with the support of an excellent therapist I’ve known for years and knowledge of NLD and my medical condition, depressed feelings crop up and sting me in stressful times.  Lately when I get upset, I have the wish to say out loud: “I understand why some people with NLD cut themselves.”  I’m not saying it’s productive to self-destruct, but it makes me wonder where those negative thoughts go, and how we can make them into positive experiences (i.e., by learning from mistakes) before self-destructive behavior happens.  And to what extent rebuilding oneself following a trauma or crisis extracts energy from us.

Our society’s general intolerance for difference is mega-disturbing.  Even as I take joy in listening to my favorite Michael Jackson songs, I can’t help realizing the pain he experienced, probably because some of it comes from a similar source as pain I’ve had.  Not from the same situations–I have the luxury of an anonymous life–but I too struggle against persistent social intolerance.  In my case it’s because my social mannerisms do not conform.  I seem “different” wherever I go, and people notice.  For this reason, I get put on the spot, and it’s not always in my best interest to explain.  In some instances, I’ve only trusted animals, despite longing for human relationships.  I hope, but do not expect that, society will learn from this horrible death.  Difference has so much dignity, if we just think in objective, open-minded ways.  Everyone deserves respectful treatment.  It’s a human-rights value, but much too rarely enforced.  I hope that advocating for NLD, and bridging it to other forms of social differences, helps change this, but I believe it will take time.

Article on girls and AS

June 10, 2009

I’m just reading this article in Newsweek, “Why Girls with Asperger Syndrome Might Not be Diagnosed” by Janeen Interlandi:

http://www.newsweek.com/id/168868.

Some things that struck me are quoted or paraphrased in green, and my thoughts are blue:

AS presents itself “less obviously in girls . . . that factor is also causing them to slip through the diagnostic cracks . . .. Some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they [specialists] report that girls with AS seem to have less motor impairment, a broader range of obsessive interests, and a strong desire to connect with others, despite their social impairment.” -I could see this turning out to be true, though with individual differences. Not that NLD and AS are identical, but I know of some NLD males who really want to connect with other people socially, too. I’d also want to know more about the “broader range of obsessive interests.” I suspect lots of individual variation on this issue, too. And also differences in how people perceive others’ interests (i.e., whether or not someone can tell if someone is or isn’t interested in a topic,et cetera). I’d like to learn about examples of the strong desire to connect with others, and compare/contrast with studies of NLD males and females of different ages, if possible.

Girls tend to be more focused on copying and imitating the behavior of others: “When social settings change, this can spell disaster. ‘As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. ‘Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.'”I agree very much. I’d add that this can be a problem in the workplace. Women with NLD or AS might not see the signs of workplace negativity upfront.  This may cause them to get manipulated by negatively-focused coworkers–and due to not being able to hide feelings and behaviors as easily–receive the consequences someone else should have gotten. Social pressure in general–whether from peers or older people–is often impossibly seductive to many with NLD (or related issues). Wanting to be included and accepted is a basic need. Even if a peer’s idea to do something is wrong, the accompanying illusion of acceptance is very hard to resist. It’s like trying to imagine saying no to being asked out by whomever your favorite movie star (or celebrity or person you most admire) is. This feeling doesn’t go away just because you become an adult. The desire for acceptance and meaningful relationships with others follows and haunts us at all ages.

According to Ami Klin, director of Yale’s autism research group, girls’ “desperation for human interaction–combined with their inability to gauge the intentions of those around them–can make girls with AS easy prey for sexual predators.”This message is an important one. I do think, though, that with guidance, mentoring, and appropriate social coaching, girls can learn the signs of manipulative behavior. When a girl with AS, NLD, or a related condition has a safe person to discuss concerns with, she can learn to build safety skills and stay away from difficult people. Of course, if someone isn’t diagnosed in the first place, this problem is a really horrible one. A good, if somewhat exagerrated, example occurs in the Hannibal sequel Red Dragon, where a blind scientist named Reba McClane (played by Emily Watson) who also may have some learning differences, is depressed and falls for a psychopath, nearly getting killed. Though I saw her vulnerability in the movie, I could see this happening to a younger version of myself. Sometimes in the past, I’ve overlooked signs of trouble because of wanting a relationship (both friendship and romantic–different poisons that appear to be pleasures until something bad happens) so much, then gotten hurt.

It is imperative that more studies on gender differences and learning conditions be completed. More on this as I learn more.

University of Michigan’s NLD article

June 8, 2009

For anyone reading this who may not know what NLD is, I found a website (updated in 2008) that provides a quick outline:

http://www.med.umich.edu/yourchild/topics/nld.htm.

Just wanted to make sure this blog has a link to a medical description.

NLD and Trauma

June 7, 2009

People with NLD likely go through PTSD somewhat differently than those without NLD.  According to the Mayo Clinic (http://www.mayoclinic.com/health/post-traumatic-stress-disorder/DS00246/DSECTION=symptoms), post-traumatic stress disorder has several common symptoms.  These are just my personal opinions; not medical ones.  For fast reading, I’ll put the Mayo PTSD symptoms in quotation marks in blue, and my thoughts as someone with NLD who has had PTSD in green:

“Flashbacks” (likely that NLD person will have an even more pronounced reaction to the flashbacks, because NLD causes us to take a longer time to get through visual information; we may also have trouble hiding our sensitive responses to the stimuli that cause the flashbacks)

“Upsetting dreams” (I obviously have NLD-inflected dreams; that is, dreams with lots of objects that disappear and dreams of being lost and turned around; perhaps PTSD + NLD can equal some doubly-disorienting dreams, particularly if they are lucid dreams–lots of loss-of-control themes, it seems)

“Trying to avoid thinking or talking about the traumatic event” (In my own case, this varies.  Sometimes I avoid traumatic topics.  But I have great trouble keeping them out of my thoughts and keeping myself from forming connections between my present-day setting and PTSD issues.  Though I don’t talk about trauma in most settings, when I feel comfortable around close friends, I feel an obsessive need–an almost physical need–to digress about the PTSD.  In fact, I feel that if something doesn’t get said, it isn’t understood.  Even if I know the other person understands, I don’t fully believe it until it’s said.  I get in trouble with people from going on about traumatic topics and not having moved on yet.  Still, while I can usually keep myself from mentioning something that could get me in trouble, I think at length about the PTSD stories and retell them to myself.  I talk to myself about them to make sense of them.  Perhaps my left brain is trying to commune with my right brain, which must exhaust the corpus collasum.)

-“Feeling emotionally numb” (I believe this feeling happens to NLD people with PTSD, along with emotional confusion, along with the struggle to express, process, and identify emotions.  This doesn’t mean we don’t feel emotions or can’t deal with them.  We do feel and deal with our emotions, but it’s more complicated for us and we need support to feel valued in our struggle to disentangle ourselves from environmental confusion.)

“Hopelessness about the future” (People with NLD probably experience this in relation to PTSD, and also probably have trouble imagining the specifics of a future, precisely because it is a visual-spatial issue.)

“Difficulty maintaining close relationships” (Definitely–as if they aren’t hard enough when we aren’t struggling with PTSD.  Moreover, friends may get annoyed hearing us talk about our grief, or even knowing grief is in our thoughts so much.  Friends and relatives may have trouble understanding why it takes us so long to move on.  I wish I could do it faster, but it’s really hard because I don’t always see things accurately.)

“Overwhelming guilt or shame” (Totally.  For as long as I can remember, I’ve been super-focused on doing the right thing and knowing the rules.  When bad things happen to me, I often blame myself.  Even if it’s not my fault (or mostly not my fault), if I get a consequence, I beat myself up.  I freak out, and I worry that my reactions may not be the right ones because I struggle to envision results sometimes.  Guilt seeps out like pus from an infected scab.  NLD causes me to pick at emotional scabs with words.  To me the words are my only control.  The words are the only hope I have of making sense of the trauma.  It doesn’t make sense to those around me, who say I’m just dwelling on the past.  But I was depressed for years before I was diagnosed; depression is a reflex to me, like drinking water, and PTSD causes depression.  I use positive sayings, with some good results, but it’s a work in progress.)

For me, having the help of an excellent therapist is essential.  I’d say all kids (and possibly parents) with NLD need regular support, either through an NLD support group, a therapist who is very familiar with NLD, and/or other parents of NLD kids.  Someone to talk to (a trusted person) in-person, in real-time, chronically is a must.


NLD and Experiencing Emotion

June 7, 2009

When I was 9, I woke a nocturnal pet rodent before school.  My pet was upset about being woken up and bit my finger.  I was so ashamed about being bitten that I told my parents I’d cut myself on the cage’s broken edge.  After the pet died, my dad said maybe he would come back as an elephant.  I wasn’t greatly bonded with this particular pet, but I was sad because I felt a sense of emotional unresolve.  It’s really hard to resolve things when one side of your brain isn’t caught up with the other.

A year later, I lost my great-grandmother.  I was very sad, and none of the adults talked with me about this loss.  I was expected to go around with the flock of relatives, and did not get to express my feelings.  Thus, those feelings were not resolved.  Though my grief got less intense over the years, I sensed an odd paradox.

In one way, I felt set apart from other people.  In another, I had all these emotional reactions I couldn’t put together neatly or evenly.  Though these emotions can be tough to express, or may get expressed in unusual ways, they are not, as literature about social communication disorders often suggests, an absence of emotion.  More likely, these reactions are appropriate ones but we have trouble putting them into words on the spot.  Many times the big emotions are overwhelming enough to feel, let alone say.

I wish that as a child, I’d been taught to use “I feel” statements.  I also wish parents and teachers did more emotional-learning activities with me, and helped me recognize my feelings.  I also think NLD kids could be greatly helped if adults give them situations and ask them how someone might feel.

People with NLD can be extremely emotionally sensitive.  The more this gets discussed, the easier it will be for people with NLD.

June 4, 2009