They are Hurting

I was thinking about some misunderstandings that I experienced while growing up. I think it's important that I share them. I hope this brief list will help clarify to parents what they are seeing in their children with Asperger's:

Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them. 

They are hurting.

Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.

They are hurting.

Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.

They are hurting.

Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.

They are hurting.

Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.

They are hurting.

Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.

They are hurting. 

Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this. 

They are hurting.

Children with Asperger's Syndrome are not crazy.

They are hurting.

I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.

Oops! I Breathed in the Wrong Direction!

When I was a kid, I experienced far fewer social conflicts online than in real life. That's because real life involves the social nuances of body language and voice tone. Today, my social conflicts are almost exclusively online. Usually, it pans out like this: I meet somebody through Facebook or reunite with somebody I haven't seen since childhood. We chat online once in a while. Sometimes, that person will even say, "I really like talking to you."  Next thing I know, the person has unfriended me or even blocked me. Usually, I just let it go, depending on who that person is and whether or not I had any real past with them, online or off, even if just for one summer at camp (I'm sentimental and nostalgic to a fault). Sometimes, however, I do ask for an explanation (if there is a way to contact that person) and I might even get one if I'm lucky. 

The top reason people have unfriended/blocked me is because I'm an atheist. I don't even have to ask to find out that this is the reason. Once, I was chatting online with someone I met through a mutual acquaintance who died. She wished me a Happy Easter. I told her I was Jewish, a Jewish atheist, to be exact. She asked me what that meant. I told her that I don't believe in God but I still value the Jewish culture in which I grew up. BAM! I was blocked. Other people have unfriended/blocked me because... gasp... I tagged them in photos. That's right, I tagged them in photos in which they are fifteen years old and not professional looking. When I contact them and ask them why, they say things like, "I'm not comfortable with being tagged." Well, gee, how about simply telling me that and NOT unfriending me? 

Probably the must hurtful of these situations happened about four years ago when I reunited with an old friend from camp online. We hit it off immediately and I developed a crush on him. I didn't tell him, of course, but he figured it out. He stopped answering my emails. He blocked me. A few months later, he unblocked me and accepted my friend request... but would not talk to me. He eventually blocked me again. For a whole year I drove myself crazy trying to figure out what the hell was going on. 

Just as hurtful (albeit for different reasons), my best friend from childhood, who I knew since 1992, stopped talking to me in 2008. I packed up and moved to NYC from my hometown in Pennsylvania in 1999, but we still saw each other about once a year. I knew she was going to get married in '08, and she definitely made it clear that I was going to be there. This was in 2007, the last time we spoke. 2008 came and went without an invitation. She rejected my friend request on MySpace. She no longer returned calls or answered emails. To this day I have no idea what happened. I even sent her an email asking her nicely why she did not invite me to the wedding or even talk to me anymore. I made it clear that I was hurt. No response. I still don't know what her rationale was for shutting me out, but I do know that it is not my fault. 

When these things happen, and inevitably hurt, I always hear, "Let it go." Sure. "Let it go." So I guess I should just say to myself, "Oh, fiddlesticks. I breathed in the wrong direction and some ultra sensitive person is shutting me out without explanation. I'll just let it go and make sure not to breathe in the wrong direction next time." I would suspect that this online drama is not unique to those with Asperger's Syndrome, but perhaps it bothers us more because we do not take friendship for granted. Perhaps, too, many are sentimental to a fault, as I am. In any case, I want to tell anybody who's reading this to be more sensitive to the person on the other side during this online nonsense. "Ignoring," is not communication, and "blocking," is little different than saying, "F--- you." Both say, "You are nothing to me." In online communication, you rarely know what happens at the other end, so this is not a case of missing body language or other cues. This is simply being kept in the dark. 

I am sure I speak for a lot of people-- with and without Asperger's Syndrome-- when I say that it is frustrating and irritating. It's like an online meme that I saw the other day: "I'm sorry that I did something that made YOU feel that I have to apologize."

"Psst! Look! There's someone with REAL problems!"

When I was growing up with undiagnosed Asperger's Syndrome, I felt like a freak. I knew I was different and I did not have an answer as to why. What I did know was that a lot of kids were mean to me, and a lot of adults-- including my own parents-- did not understand me.

Sometimes, in tears, I lamented about being a "freak" and having problems that seemed to have no solution. Sometimes my parents tried to help me put things in perspective, but in a very superficial and unhelpful way. For example, once we were eating at Chi-Chi's (a Mexican restaurant) and someone with no legs and hooks for where his arms should be was sitting in a wheelchair about ten feet away from us. My dad whispered to me, "Now there's someone with REAL problems." Another time, my mother (who is a high school teacher) said, "You think you have it bad? One of my students is pregnant." It wasn't just my parents who did this. Once, my best friend said, "Your problems are not that bad. At least you're not dying of AIDS or something!"

I bet if I told these stories to an auditorium of Aspies and asked how many of them have stories like this, every single one would raise their hands. I also am willing to bet that all of them would feel the same frustration I did. I was about twelve when my dad pointed out the limbless person in Chi-Chi's, and I remember that his comment didn't make me feel any better. Same thing when I was 15 and my mother told me about her pregnant student. Same, too, when I was also about 15 and my friend told me that at least I wasn't dying of some deadly disease. None of these comments made me feel better because I always knew that what I was going through was unheard of. Getting pregnant, dying from AIDS-related complications, and even having no limbs were problems that at least had names and explanations. In fact, I recall telling my friend that I would rather be dying of AIDS-related complications and have friends than be physically healthy and shunned by an entire society (which is what I felt like was happening). And this was not just something I said on a whim. I meant it.

In any case, just because someone complains about problems that are not as (superficially) serious as a deadly disease or the loss of limbs or teenage pregnancy does not mean that the problems are not just as real. With that logic, one could tell the person with HIV that at least he has all of his limbs, and at least he lives in a country where HIV can be managed for decades with medication and is not an immanent death sentence like it used to be. One could also, then, say that unless the person has problems that are not the absolute worst in the world (whatever that is) then he or she should not complain. By then, one has alienated the vast majority of the world, whose problems are suddenly not real.

Please, do not tell your kids or friends with Asperger's Syndrome, "At least you're not dying of some deadly disease" or something similar. It trivializes the very real anguish they are experiencing. Just because AS cannot be confirmed visually like the lack of limbs, a deadly disease, or teenage pregnancy, does not mean the problem does not exist. Furthermore, trivializing your kids'/friends' issues may make them feel like their problems are all in their minds and that they're crazy for feeling anguish. The last thing someone with AS needs is to feel even crazier than they already feel.

Are You SURE You Have Asperger's Syndrome?

Being the highest of the high-functioning on the autism spectrum is a double-edged sword. On one hand, it's great that in adulthood that my symptoms are sub-clinical and I can finally relax and not worry that every little thing I do is going to set people off due to a miscommunication. I make friends with ease and I am very personable. On the other hand, because of these skills that I now have, lots of people who I meet for the first time don't believe me when I say that I have Asperger's syndrome. Yes, it's true that I diagnosed myself initially before seeking confirmation from a therapist, but I'm not the type of person that sees one little trait that vaguely fits my personality and makes a diagnosis. It is true, sometimes people do that. "Oh, I'm fascinated with numbers. I must have Asperger's syndrome," someone might say, not thinking about the label that they're misapplying to themselves. But I'm not like that.

People who knew me from summer camp or from school, with whom I reunite on Facebook, often say this when I tell them I have Asperger's syndrome: "That explains a lot." And it does! People who I'm just getting to know today can't see that I have it because I've compensated for most of the problems that come with it. Just because they can't see the struggles and the pain I endured while trying to navigate the social world throughout the vast majority of my life (a lot of it was trial and error) does not mean that these things didn't happen. Asperger's syndrome is the only logical explanation for the social problems I had throughout my childhood and part of my adulthood. Some people become sub-clinical in adulthood (AS advocate Michael John Carley comes to mind-- I used to go to his support group and I never would have guessed he has AS). A child may have a dyslexia that makes reading a headache, but upon adulthood that same person may read with near total fluency. On the other hand, some dyslexic people rely on audiobooks in adulthood. 

Like dyslexia, autism is a spectrum. And I think the highest functioning people have it the hardest growing up because they appear to be "normal." That is, "normal" kids who are stubborn, uncooperative, ill-mannered, rude, etc. When a child fits the stereotypical AS traits-- talking about trains, flapping hands, taking idiomatic expressions literally-- then people may see the AS more clearly and be more accommodating. Let's raise consciousness. For those of you who are the highest of the high-functioning, I'd like to hear from you.