Without A Diagnosis

            Christmas Day, I came to a disturbing realization. I have Asperger’s Syndrome, a type of Autism.  This is a brain development disorder that leads to lifelong problems with social skills, behavior, and coordination. I’ve had this suspicion before, but online descriptions of its symptoms have always thrown me off.  The characters depicted as having Asperger’s on television, Dr. Spenser Reid on Criminal Minds, Sheldon Cooper on The Big Bang Theory, and Max on Parenthood are nothing like me.  I don’t have a flat affect, I don’t speak in a robotic voice, and I don’t rattle strings of facts off the top of my head.

                And let’s get real.   Who doesn’t google symptoms of various disorders and try to diagnose themselves with everything from Leprosy to Borderline Personality Disorder?

                I took what was allegedly a serious diagnostic test and scored 33.  Anyone scoring 32 or above has Asperger’s.  I still wasn’t convinced, however.  After all, because of online IQ tests most of the population is convinced they are genii, even though that’s statistically impossible.

                I appeared to have some symptoms, but not others.  When I read the books of John Elder Robison, who writes about his own Autism, I didn’t feel any connection to him.  His experience was not mine.  So many of the symptoms exhibited by him were just not me.

                But when I googled signs of Asperger’s Syndrome in women, I hit pay dirt.  I went from reading descriptions of men who sounded nothing like me, to women who sounded exactly like me and had identical experiences.

                According to most websites, Asperger’s Syndrome primarily effects men.  When I read that, I had a gut feeling this was incorrect.  When I dug deeper, my suspicions were confirmed.  Women often go undiagnosed or misdiagnosed altogether.  In fact, the least diagnosed age group is the one I belong to:  middle aged women.  We slipped through the cracks, since Asperger’s wasn’t even a diagnosis until 1995, so schools in the eighties didn’t test for it.

                The symptoms of Asperger’s in women include:

·         Pacing.  Since early childhood I’ve often paced back and forth.

·         Hypersensitivity to sound. Specifically, repetitive noise, whistling, and crinkling paper.  Crinkling paper drives me crazy.  Who crinkles paper around me, you might ask?  My cats.

·         In childhood, feeling like an alien or that people were speaking a language you didn’t understand.

·         Trouble making eye contact.  I don’t believe I exhibit this anymore, but I did when I was a kid.  I remember other kids teasing me because I used to roll my eyes up to avoid eye contact.

·         Inappropriately outspoken and blunt.  Tells the truth when shouldn’t. Often described as others as “telling it like it is.” May be told they need to learn to keep their mouth shut or watch what they say.

·         Socially behind peers and hangs out with younger children in childhood. Often told to “act your age,” or “you act like a two year old.” This is because children with Asperger’s are developmentally behind. 

·         Reactions are “off.” This is because our ability to outwardly express emotions is impaired.  Reactions are learned, so rather than instinctually reacting, we are giving a learned reaction.  And there is a disconnect between what I am feeling and my outward expression of that feeling.  I remember being frustrated at my last job when people would tell me to calm down and I didn’t know what the heck they were talking about; I was calm.  Overreacts or underreacts.

·         Fixates or obsesses about something and drives everyone crazy talking nonstop about it.

·         Late bloomer with romantic relationships, has experiences in late twenties and thirties that most people have in their teens.

·         Pattern of short-lived romantic relationships that last 2-3 months and start off intensely.  In the beginning, partner can’t believe their luck to find such a wonderful person that seems to have everything.  This is because women with Asperger’s are good at masquerading their symptoms.  However, as the relationship progresses, “quirks” start popping up, and the partner realizes there is something “different” about the person with Asperger’s and distances themselves. Unfortunately, people tend to interpret “different” as “off” or “wrong.”  It really isn’t.

·         When dating, minor issues such as an unanswered text can cause major anxiety. Dating in general is difficult for anyone with Asperger’s because we are unable to read social cues and 90% of language is non- verbal. Much of the preliminary stages of dating involves body language.  I’m not only unable to tell if someone likes me, I can’t communicate non-verbally my own like or dislike.  I’ve rarely been asked out “organically” in my life because of this.  Like most women with Asperger’s, I’ve had to rely on online dating.

·         Dislikes physical contact unless it’s from a romantic partner.  Ugh, I hate being touched or kissed.  I dread that moment in a meeting where you’re called upon to greet people or say good-bye.  Friends are used to me leaving abruptly. I’m totally into the Irish goodbye.  And when I’ve tried to give others physical affection, I’m super awkward.  Like, I put my arm around them and my finger somehow winds up their nose.

·         Obsession with numbers, patterns, etc.  With me, this manifests in an obsession with dates.  I love knowing the correct date of something.

·         Has songs that we find comforting and often listen to them over and over.

·         Often ends up in toxic or abusive relationships, because the red flags that would deter a “normal” person are not apparent to someone with Asperger’s.

·         Occasionally has meltdowns.  This is because the constant need to monitor everyone and analyze everyone’s reaction and carefully consider my response…in short, act like everyone else…is exhausting.

·         Always an outsider, doesn’t fit in unless it’s with other Aspies.

·         Often disliked and a target of bullies.  One, because we’re socially awkward and seem weird.  Predators often single out the oddball for abuse. Two, because that little Aspergerian habit of “telling it like it is,” is obnoxious to a lot of people.

                I’m as certain I have Asperger’s as I can be without getting an actual diagnosis from a health care professional. (I guess that would entail seeing a neurologist).  My emotions since this realization have seesawed back and forth from relief to finally have an answer as to why I’m so different from everybody else, to grief.  My entire life I’ve tried to fit in, when I was never going to be able to do it.  It was an exercise in futility, wasted energy that should have been diverted towards something I could do. 

                It’s like all my life I’ve been playing a game of poker with players I can’t see.  I have five cards, I know the game, so I should be able to win at poker, but I keep losing.   I dedicate my life to studying poker.  Read books about poker, studied how others played poker, practiced playing poker, sought help on how to play poker.  And still I keep losing.  Then one day someone flips a switch and I can see all my fellow players.  They all have ten cards.  I only have five.  One can win at poker with only five cards, but your odds are vastly diminished when everyone else has ten.  And that is something beyond the control of even the best poker player.

                Kind of wish I hadn’t wasted forty-three years of my life trying to do the impossible.

                I’m not quite sure where to go from here.  Having Asperger’s Syndrome is not all bad.  I’m in the company of some of the most brilliant minds in our society: Stephen Spielberg, Jerry Seinfeld,  (remember the Kiss Hello episode)? Steve Jobs, Bill Gates.  They all have Asperger’s Syndrome.   It is suspected that some of the best writers in history, such as Emily Dickinson and Jane Austen, also had Asperger’s.  Writing is often associated with Asperger’s, because words is the only real way we can communicate, so we’re great at finding the right word to describe something.

                Above all, I keep telling myself I am the same person I was last week, last month, ten years ago.  Nothing has changed.  If anything, I’ve received the answer to a question that has plagued me all my life…why am I so different from everyone else?  I’ve always operated under the assumption that it was all in my head.  That somehow the difference was my fault, within my control.  Now, I know that I’m different because my brain is wired differently and it’s not something I can change or help. 

                It is what it is.  Now I can find ways to work around it.