Archive for the ‘adolescence’ 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.


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.


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

NLD Angst

June 3, 2009

When things get really hard–either a bad day or chronic problem–I tend to get NLD angst. This feeling involves the following emotions, give or take:

-Frustration from being misunderstood

-Anxiety that society is largely biased against the things people with LDs do well

-Fear of what I don’t understand, but am still responsible for

-Apprehension of not knowing what to do next, but being required to respond (or not respond)

-Worries about challenges of social-relating (i.e., I don’t network easily, and it’s tough to make friends, much as I try to pretend it isn’t; a lost friend is a quandary for anyone, but doubly or triply challenging for someone with NLD, who will require more time to find new friends)

-Worries about rejection (again, a larger problem for individuals with NLD due to having trouble responding to an event)

-General knowledge that one side of my brain is not caught up with the other side

When I was growing up, I didn’t know I had NLD, so I suffered in my social relating but didn’t know why. If I could help parents, teachers, and children, I would say this (and will add to it in future posts):

-Involve child with other kids as much as possible, but not to the point of overwhelming them

-Watch for signs of fatigue, anxiety, and social overwhelm

-Teach child it’s OK to not attend every social event

-Teach child how to begin and end conversations, and that it’s OK to make mistakes

-Teach child how to explain themselves

More later.