Everyone’s Talking about Michael Jackson . . .

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.

NLD and Barriers to Course Participation

By the time I’d reached first grade, I had been taught to observe relative silence in school.  Thus, I didn’t feel comfortable conversing and was terrified to ask questions or make comments.  I never knew where/when to speak up.  As life went on, I got terrified of speaking in class, which I now see as like public speaking.  And now I find myself holding back from asking questions due to these (at least for me) largely-NLD issues:

-Worrying that my question/comment is off-topic.

-Having trouble stringing together concepts into the form of an on-the-spot question.

-Confusion about what exactly I’m asking.

-Worrying that my question/comment may have overly-opinionated content (i.e., be too critical, or sound angry without me intending or realizing).

-Fact that, at least much of the time, I can’t project (“throw”) my voice and instead tend to speak in a very “indoor” voice.  (I studied solo voice once, but could never get my voice loud enough for a whole room to hear, plus now I’m very self-conscious about my speech-pattern issues, which makes speaking up even harder.)

I imagine myself proactively asking questions in front of a class, but doing it is completely different.  Also, I’m often too busy just copying stuff off the board, or doing computation, to ask a question in those less-than-ten-second windows.  Tomorrow if I’m not too exhausted, I’m going to try and stay after class so I can ask the professor some questions I will prepare in advance.  Hopefully this will help me feel more comfortable, but I can’t know for sure.  I’ve had many difficult experiences–more than not.  I’ve been passed up for jobs due to NLD, et cetera.  I feel like there should be a book called “Dealing with NLD in an NLD-Unfriendly World” or something. barriers

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

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. 🙂

NLD and Meeting New People

I just made the decision to return to school.  I’d looked for work for the past year.  Despite a great resume and more interviews than I care to count, I could not find a job.  I know our economy’s living out a horror story, but my fields have vacancies here and there.  For these I applied, faithfully, in my city, and many times was asked to come in.

Unfortunately, each time my NLD was perceived as too awkward and/or I suffered from expressive language difficulties (writing is so much more comfortable for me).  I got used to the standard interview questions, and spun my responses.  I did get better at interviews than when I began my search, but I’m just not a natural at selling myself.

I’m not comfortable being scrutinized or cross-examined.  Whenever possible, I avoid situations where people try to cross anxiety-provoking lines, where I feel like my boundaries are not respected.

It’s harder for me to say no because of NLD.  That doesn’t mean I don’t say no, just that it’s twice as uncomfortable.  Deciding between making an excuse and a point-blank “no” is always a tough call.  A call that would easier to make if my visual-spatial skills helped me navigate, but of course they’re generally not reliable.  So my right brain tries to catch up with my left brain, but it’s a big challenge.  It interrupts and halts my speech and makes me seem awkward.

The best advice I have is this: tell people you have NLD before a professional meeting and work with people you already know if possible.  So often it’s not possible, though.  It is my hope that in the future, society will learn to respect and celebrate learning differences.  Until then we must advocate as much as we can, but also not get exhausted or overly stressed in the process.

NLD and the Struggle to Move Past Things

Because I have NLD, it takes longer for me to “move on” from experiences. One reason is this: I have delayed reactions to social events. After a conversation, I need to replay the other person’s comments and try to put them together. If I didn’t have NLD (or a related LD), I’m pretty sure the conversation’s theme(s) would more easily hit me, perhaps during the conversation, which would give me needed clues to best respond. Since it takes longer for me to get to that point (and I have insecure motor skills–i.e., I’m trying not to fall down, tip over, or knock something over, et cetera), I tend to have very flat responses. I’m not animated or sparkly in most settings. I can be more talkative as I get comfortable, but I’m usually restrained. I may look distressed, but I’m just trying to process things, to compensate as best I can for my social perception troubles. I’m also trying to avoid immersing myself too much because a) it’s overstimulating and b) I’d rather distance myself than risk making a social mistake, since it’s tricky for me to identify and make up for the mistake on the spot. More soon.

NLD and Getting Through Get Togethers

I have great trouble at family get-togethers. I am fortunate to have a few relatives I love seeing, but in most cases, I don’t find the family events warm. I find them overtiring, boring, and dismal. Relatives tend to fall into a few main categories with respect to how they see my NLD:

1) They ignore me and pretend I don’t exist.

2) They are supportive and listen to my issues.

3) They pathologize the NLD symptoms and make untrue assumptions.

4) They ask intrusive questions that aren’t their business.

I’m aware that I sound accusatory in making these observations, but after years of reviewing the events, I know what’s going on. Here are some suggestions for helping NLD kids in social situations:

-Talk with kid in advance about social event in detail.

-Be on hand to sit with kid any time he/she feels uncomfortable (especially a younger child, but even when older, this support can be necessary, particularly if people you’re not sure about are there).

-Have kid signal you when he/she feels tired, and respect kid’s need for an early bed time (NLD is arguably a physical syndrome as well as neurological).

-Don’t overload kid with too many events. Pick a small number and opt out of things that are too overwhelming. Give your child’s opinion weight: if he/she is anxious and/or tired, respect these issues and help with planning and damage control.

-Ask kid what he/she thinks about social situation and provide feedback.

-Ask kid what things make him/her anxious and what you can do to help.

-Tell your child you understand that social situations cause anxiety and that it’s not his/her fault, and that he/she has many talents and abilities.

-Respect your child’s right to confidentiality, and don’t tell sensitive stories without child’s prior permission to do so.

Childhood social situations are the foundation for relating well as an adult. If these observations help even one family impacted by NLD, then I will have done something very positive to reduce the suffering and stigma this LD too often leads to. With social skill training (make sure it’s age-appropriate, interactive, and not insulting), relationships can be emotionally supportive learning experiences.

NLD as an Adolescent Girl

Here’s a vignette from my past, brought back in the hopes of helping others:

Freshman year of high school, I obsessed over a senior boy and could not get over it. At the time, I wanted a relationship. I didn’t know how to tell if he liked me. I wrote notes and left them on his locker and even doorstep. I called his number just once, and talked to his mother but did not identify myself. Predictably, the crush was just that, and of course unrequited.

In a totally Queenbees & Wannabes moment, an older girl (friend of his) told a friend of mine I was out of line. Since I still had undiagnosed NLD, I took this criticism more harshly than what was intended (though I still maintain that school kids are often insensitive to each other, and could only attend a class reunion if all my good friends were there to talk with me). I sent an (accepted) apology back through the grapevine. I berated myself. I went to extremes. I asked my friends if they thought I was a stalker.

Fortunately they were on my side and would not let me over-criticize myself. I had no adult mentors back then, so I just had my same-age friends to run stuff by. In contrast to lots of NLD literature, I was able to see my errors and move on after a couple days. I now know just about everyone has a story like this, and I can laugh about it. I’m glad I learned not to over-crush, but I’d have other issues over the next few years.

Which brings me to a related point: NLD is not simply the NLD-person’s issues. NLD is just as much about how society views this LD.

NLD and Social Learning

Though we with NLD have some “different” social communication issues (i.e., social skills are more stressful and tough for us to execute), we still wish for relationships.  I personally am reserved around people I don’t know, more relaxed around close friends, and prone to swearing around my family.

Growing up, I had an outgoing personality at home and a super-quiet one at school.  In college and beyond, those extremes became less so.  I’ve increased the issues I keep to myself, but also been able to enjoy closer friendships.  Both results happened because a wonderful person taught me the very important skill of refining my boundaries.

As a high school freshman, I didn’t know how I could make it through three more years.  I left during my sophomore year and did not return until the second semester of my senior year.  During that time I took some community college classes and suffered from serious depression.  I also developed PTSD.  I’ll describe those years in future postings.

Some Cautions for the NLD Adolescent

This blog is now linked on facebook, and I have joined most of facebook’s NLD groups. Which brings me to my kids and internet warning: the internet, despite the obvious temptations to those with NLD, is not totally safe. It should not be used for dating. I learned the very difficult, tramatic way–and I know this is controversial–that the internet is often a bad idea for finding love. Without getting into a long narrative, here are some bad things that can happen:

-Getting scammed (Oprah did at least one episode about online “love” links that turned out to be schemes)

-Abuse (the internet allows people to hide true identities; read the book Katie.com for a good discussion of what can happen)

-Disappointment (speaks for itself)

-Loss (no one can get back the time lost when the internet takes over someone’s life)

Here’s why online dating is a special safety issue for young people with NLD:

-We with NLD love textual communication and often feel more comfortable with email than calling, which can cause kids and adolescents to sometimes unknowingly say more than intended.

-NLD causes us to lean towards more literal interpretations of things; text by itself makes it even harder to decode lies and misrepresentations

-We with NLD tend to have more trouble fitting in socially and are thus even more vulnerable to internet safety troubles

-We with NLD sometimes struggle with worries of never finding a future spouse (and/or friends) to the point of getting desperate and settling for deception in an online setting

-As a person with NLD gets closer to their adult years, they want to date and have close friendships more and more, at the same time they are expected to show adult judgment, which is a bad combination where internet dating is concerned (i.e., naive judgment and wanting to date at same time equals potential disaster)

All this said, the internet is good if used wisely (i.e., probably not for dating; a safe compromise would be pen pals who don’t exchange concrete identifying information; forensic internet experts say don’t put anything you wouldn’t want on a postcard in email).

Getting to Un-Stuck

When you have NLD, it’s hard to unstick yourself from a social misunderstanding or conflict. NLD makes it hard to correctly read facial expressions and other cues on the spot. For these reasons, I almost always think of a good comment after a conversation ends. I get glued to emotions and memories in order to process them. Sometimes I get stuck. To me a conversation is rocky, like walking through mud or being on a boat. I misunderstand visual stimuli every day. To make up for it, I cling to rules. I got into this pattern of following rules. I still fall into it sometimes. I’d tell myself that if I just followed the rules, I’d be OK, and maybe appear normal.

But inevitably, people would point out areas to correct. I’m over-sensitive to criticism, and sometimes I feel stung. It’s a step up from a poke. More like a little jab. I have to nurse myself out of it in order to move on. This repair work is tough. To do it, I must recall the situation, take it apart, and put it back together. Minor problems clear up more easily, but major ones hurt, and this tough person is still working on it. I try to take out the constructive parts of a criticism, but it’s more work for me due to NLD. Sometimes stuck has to run its course before the repairing can begin. More on this later.