Archive for the ‘medical’ Category

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.

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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.

Article: “Doctors are ‘failing to spot Asperger’s in girls'”

June 9, 2009

I just found an article on this site: http://www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-aspergers-girls, which appears in The Observer and is written by Amelia Hill.

I think it’s also relevant to NLD. Girls with social communication troubles are not being diagnosed early enough, or at all. Some AS/NLD gender similarities from the article follow, with article quotes in purple and my thoughts in blue:

Girls with undiagnosed AS may turn to “self-harm or anorexia”Though I didn’t have chronic struggles with anything besides normal teenage dieting, I could see how NLD issues could cause someone to develop anorexic thought patterns. Anorexia requires rigid thinking and uses rules. Plus girls may think it’s just a normal behavior that will presumably help them fit in, when in reality it’s very dangerous. Plenty of AS and NLD females have no trouble with eating issues, BTW. As for self-harm, I wonder if the self-harm habit may partly result from a) hypo-sensitivity to pain and b) untreated depression. I could see someone with NLD issues resorting to self-harm during their adolescent years, but more often, those with NLD are very positive-health-focused. I struggled with depression in my teens and had times of death ideation, but I never wanted to be dead or commit suicide. I also have little tolerance for pain or medical procedures, and am hypersensitive to pain, so would never self-harm even if depressed enough to contemplate. I’m even squeamish about tattoos and have never gotten one, though my ears were pierced in my teens to fit in. The holes close if I don’t wear earrings every day, and I hate even the sting of re-piercing with a safety pin. My medical condition requires routine blood tests, which I’m used to, but sometimes I cry afterwards; it’s mildly traumatic to have tubes of blood drawn by a stranger.

Dr. Judith Gould, Director of the National Autistic Society, says: “Girls are not being picked up because there is still a stereotyped view of what Asperger’s is, which is based entirely on how boys present with the condition,” she said. “Professionals are not up to speed in knowing how girls present. We are working with the government to ensure they highlight this concern in their upcoming consultation. We are hoping to convince them to target this much under-investigated but vitally important issue.”

-For instance (to parphrase the article), girls with social communication issues are more likely to find a small number of friends and pay more attention to social rules than boys.

-Girls, Tony Attwood says, learn to “observe from a distance and imitate people” and may “escape into fiction.”-When I was growing up, my favorite activity was reading books, though not fantasy or sci fi per se. I very much agree that as a kid, and now as an adult, I observe people from a distance and imitate them. I’d argue that this behavior is a survival adaptation.

I hope that in the future, adults will look more closely at childrens’ struggles and not hesitate to provide social guidance and meaningful, creative intervention. Too often, children with NLD are talked down to. And adults are left to figure out the impossible.

Yesterday I was thinking how even email can include communication anxiety. Calling is worse, but sometimes just sending something–perhaps due to the power I attach to words–feels like an emotionally-charged task. There’s such a need for an NLD community online. I hope this is the beginning of one. I think it is. 🙂

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.


June 4, 2009

NLD and Physical Symptoms

May 25, 2009

Though I’d like to do more research, I sometimes wonder if NLD is (in part) a physical syndrome. Sometimes my visual-spatial resources get really overwhelmed and I start feeling ill. It could be due to my medicine, which causes headaches, but I also think it’s one of the ways NLD individually affects me.

My headaches are almost always on the left side of my head. I can’t help thinking the right side of brain is saying “I’m tired, stressed, and overstimulated.” It tends to happen when I study without enough breaks or am at a social event for longer than I can easily deal with.

How does NLD relate to sensory processing?

May 22, 2009

Yesterday I looked through some sensory integration checklists and wrote down the issues that are true for me.  As always, there’s variation in how we with NLD experience our issues.  Some things that are issues for me will be non-issues for other people with NLD, and vice versa.  I also think age of diagnosis is a factor in sensory perception.

By the way, I like the term “social perception” better than “social comprehension.”  NLD causes problems in perceiving social stimuli, but we can understand what’s going on over time, and with help.  Misunderstandings sometimes happen, but we do understand a great deal about our environment.

Due to my individual sensory issues, I find even walking on a level surface somewhat disorienting.  I try to be careful on the stairs, as I easily lose my balance.  I’ve climbed ladders, but get scared doing so.  I like music at a low volume.

More about sensory processing as I read and learn more.

NLD and Food Issues

May 21, 2009

As a child, I was an extremely picky eater.  I stared at combinations of food and could not eat them, let alone chew or swallow.  Many years later, I developed sensitivity to dairy products, which is both genetic and a reaction to my medication (I have a co-occurring chronic medical condition–long story).  As late, I no longer eat dairy, except in trace amounts and situations when I feel that having a few bites is easier than discussing these issues.  I’m a very reserved person.  That’s one reason it took me so long to do a blog.

Then I began my work search and realized how much ignorance there is about NLD and the spectrum.  Since this must change, I must blog.  My food issues obviously add anxiety to the social scene, as does the fact that I don’t drive.  I’m a lax vegan (sometimes eat foods with trace amounts of animal products and can’t give up honey), so I’m learning how to love vegetables.  Some observations follow:

-Bowls are easier to eat from than plates.  Spoons are easier to eat with than forks.

-An NLD person may find it necessary to eat very slowly.  I do, because I don’t want to drop my silverware or spill on myself or the table.

-One food is less overwhelming than several combined ones.

-Sometimes there are foods we just don’t like, and it probably won’t change.  It won’t do any good to try and force a kid to eat; it will just lead to future anxiety, and worse, future eating issues (will be blogged on later).

-It may be that warm or room temperatures are more easily tolerated (obviously depends on food and season) than cold or chilled.

-Kids with NLD should be encouraged to learn cooking skills.  Find pictures of recipes whenever possible.

-Use hidden food techniques if needed, but also have kids help with cooking.

More on this in the future.