You’re doing it wrong…

I can’t really portray myself as the “typical poster child” for people with autism.  Even after 10 years of knowing that my strange wiring has a name (whether you call it Asperger’s Syndrome or High Functioning Autism or just plain Being Screwy,) I have a hard time wrapping my head around those descriptives.  I don’t want to be labeled, and I don’t want to use a label as an excuse.  I hate to admit weakness or vulnerability.  My standards are higher than that- but reality is what it is all the same.  I have to find ways to cope with the anxiety, the emotional disconnects, and the physical ineptitude that comes with the package.  Some days are better than others, but it does get a bit easier with age and time- and by being around those who tolerate my eccentricities.

Most people who know me aren’t really aware that I’m HFA, or have Asperger’s Syndrome, or whatever you want to call it.  I’m fine with that, because I have spent decades of my life trying to navigate and function in the “normal” world.  Most of the time I can play the “normal” role pretty well, and I’ve learned to either avoid the things that make me look awkward or find ways to deal with them.  I also blend into the scenery very well, and if I don’t want to be noticed, I’m not going to be.

Many people associate autism spectrum disorders with the cognitively challenged or with “idiot savants.”  While one may be both cognitively challenged and autistic, one can be autistic and not cognitively challenged at all.  (Think Albert Einstein or Thomas Edison here, both brilliant innovators and thinkers who were most likely somewhere on the spectrum.)  People with high functioning autism can (and often) do things that the “normals” do-get educated, hold gainful employment, have and raise children, and integrate into the rest of society.   We might appear to be eccentric or odd or awkward, (and we might even fall down a lot,) but we can and do function.  My road map for getting around in this world looks a lot different than yours, but I can make it to the same destinations.  Sometimes I can get there faster, but other times I have to take the scenic route.  I have to navigate with the map I’ve been given, because it’s the only map I have.

Common knowledge paints a  bleak picture of autism- the non-verbal child rocking back and forth, unaware of the world around him or her, rather than the tech geek who might not be a huge fan of socializing but who can design and program and get lost in virtual worlds.  Sometimes society sees autism as the image of the “Rainman” character, or as the guy who can play Mozart from memory but can’t control his bowels.  The key here is that autism is a spectrum. Some people with autism have incredibly high IQs and extreme cognitive ability.  Others are more in the “normal” intelligence range, and some are profoundly mentally challenged.  No two people on the spectrum are alike.

All I can say to parents of an autistic child is that there is good life to be had past that diagnosis, and a lot of that good life is what you create it to be.  It’s not the end of the world, especially when you refuse to accept excuses and when you think outside the label.  In some ways I think my parents’ ignorance of autism worked in my favor, because I was not indulged, mollycoddled or otherwise given a pass on acquiring necessary life skills.  I was actually held to a higher standard in most things when compared with my “normal” sisters because I was a voracious reader, had a broad vocabulary, and was capable of academic achievement in many areas.

My parents didn’t know anything about autism, but they knew there were things wrong with me: I could read- anything and everything- before my second birthday, without any coaching or lessons.  They didn’t know about hyperlexia- and why should they, when hyperlexia affects 1 in about 50,000 children, and 75% of those are male. They were dealing with one in 200,000.  Hyperlexia is a condition exclusive to HFA children, which is another fact they had no way of knowing back in the early 1970s.

I was born in fragile health and had a litany of respiratory and other health problems in early childhood.  I was also born as the third child in as many years.  Too-close birth spacing, and poor health in infancy and early childhood are associated with an increased likelihood of autism spectrum disorders.  It probably didn’t help matters much that my oldest sister (who wasn’t quite three years old at the time) tried to suffocate me with a pillow the day I came home from the hospital.  (There are more than one reasons that my son is an only child.)

My parents knew my gross motor skills were abysmal, and even sent me to physical therapy for quite some time.  I have very poor balance, as well as severe myopia, and even with vision correction I still have a difficult time with visual-spatial tasks that involve gross motor skills.  I was eight years old before I could balance well enough to ride a bicycle.

My parents knew I was deathly afraid of almost everything- a change in routine, strange people, flying insects, you name it, except for dogs.  Why I was so comfortable with dogs I’ll never know, but I’m still more comfortable with dogs than with people.

I was prone to panic attacks, and I was taunted and beaten daily by other children (especially my oldest sister) and pretty much was a basket case spaz most of the time- when I wasn’t buried in a book.  I had my obsessions with different and often unusual subjects- dogs, murder mysteries, rock and heavy metal music, classical music, all things automotive, and 20th century history.

Though there were bright spots, for the most part, between the anxiety and (later) depression, my childhood was scary as hell.

 

Even though the tendency to live as a perpetual deer in the headlights becomes less and less marked as I age, anxiety and fear still dominate and define my emotional life.  That may sound bleak, but I am not a person who is dominated by emotions.   I am governed much more by what I think than by what I feel, which is probably the only reason why I can get out of bed in the morning and step out the door and function without completely freaking out.  I do have emotions, but they have to be filtered through and processed through my mind before I can deal with them.  Out of necessity this makes me a delayed reactor.  I can get through a loved one’s death and funeral and all that and not appear to be fazed by it- but a week or a month or even 20 years later the emotions pour out- some trigger or event or visual sets off the process and I find myself mourning a long ago passing or reliving a long ago trauma.  That sucks, but I don’t wear my emotions out for the world to see.  I have a hard enough time figuring them out for myself.

I don’t like being physically touched, especially without warning or by strangers.   I am not in any way a “hugger.”  I will hug when it is socially necessary, but I’m not going to be the one starting it, and the person I’m hugging better be an immediate family member or a very close friend.  My discomfort with physical contact might go back to my sisters and their friends’ constantly tormenting me because they knew if they did poke, prod, grab or otherwise contact my person that they would elicit a response.  I had a most overpowering and piercing scream that was loud, but not quite loud enough to overpower Mom turning the TV up all the way.

 

Having live, stinging insects thrown in my hair didn’t help alleviate my disdain of human contact either.  I’m not sure if my distaste for physical touch came first or if that distaste was created by the indignities of getting punched, slapped, stepped on and/or the challenge of removing live wasps from my hair without getting stung.   I had very long, very thick hair as a child, which made removing foreign objects from it challenging at best.  That’s part of the reason why my hair is cut short today.  It’s easier to color and it survives my early morning swimming much better too.  It’s worth the temporary distress every month or so to keep my hair short.  Even now, a routine hair cut or Dr. exam is not my idea of a good time, although I know both are harmless, temporary and necessary.

I have a difficult time with eye contact also.  In a way it’s good that I stopped wearing contacts a few years ago and I had to go back to glasses.  I never liked the coke bottle thick glasses I had to wear as a kid, but the glasses available today with the plastics aren’t nearly as funky looking.  Glasses give me a little something to hide behind.  I am awkward at best with eye contact because it does not come naturally for me.  Neither does body language.  I have to consciously think about those things and what  non-verbal messages I’m sending when I’m carrying on a conversation out in public.  I don’t always get it right.  I don’t get it right a lot of the time, even at my age.  “Normal” people get non-verbal communication instinctively, but it’s a mystery to me.  Non-verbals are one reason why I prefer to communicate in writing.  I am much more comfortable staying in the dimension of verbal language.

 

I love Cliff’s Notes.  Yes, I read the books too, but sometimes highlights are great as a refresher.  If I were to write a sort of user’s guide to dealing with me and not being too perplexed while doing so, the Cliff’s Notes version would go sort of like this:

If I’m not looking you in the eye, it’s probably because I forgot I needed to.

I trip and fall easily, so if you notice me hanging onto the rail, or avoiding activities that require balance and coordination, remember, my gross motor skills are rather poor.

Don’t touch me without fair warning- including lint picking and tag stuffing.  I would like to be enlightened that I have a tag sticking out, or dog hair on my sleeve, but please let me fix it or remove it.

Don’t be alarmed when I fall off the planet from time to time.  I don’t need to be connected to the rest of the world 24/7, and I do disengage from time to time to help preserve my sanity.

Don’t take offense when I take things literally.  I appreciate sarcasm as an art form, and I have a wicked twisted sense of humor, but please don’t intentionally make yourself hard to read. 

Remember that I’m very poor with non-verbal language, both sending and translating.  Say what you mean and mean what you say.

Don’t be surprised when I go down a different tangent.  My wiring is different, and sometimes I can associate completely bizarre and different things (that make perfect sense to me) but that don’t make sense to other people.

Please give me some respite from screaming kids, demanding people, and from constantly being “on stage.” I can cope with the “normals,” and I navigate better than I probably should in the “normal” world, but I am still a traveler, not a native.

My primary emotion is “fear.”  Thirty years ago it used to be “terror,” so this is improving, but still…thank God for Prozac.

There’s a pill for that…maybe?