It’s bloody amazing what people will shame parents for. It’s also scary that the reality of parents being able to screen out and dispose of any less than perfect embryo is quickly coming to pass.

I gotta ask the ethical question: if my parents had known how jacked up I would be mentally and physically would they (should they?) have terminated my life then and there?

Now, I have to state this choice is merely hypothetical in that my parents both come from ultra conservative Christian traditions that are vehemently pro-life.

Abortion, infanticide and genetic selection are concepts that they find to be morally repugnant and on the same level as murder. Even if they had not held that particular view of life and the hand of God in it, in 1968/9 genetic testing, ultrasound and all those technologies were unknown. You got what you got back then. Lucky me. They didn’t have the choice, (wouldn’t have taken it if they did) and were handed a rather dismal result of the genetic crap shoot.

I sort of feel bad for that. I am the third daughter of three for a man who wanted but never got a son, and a defective, sickly one to boot.

So if parents could know (and sooner rather than later the technologies will be in place) if their unborn offspring will be genetically “defective” or anything else they don’t want- wrong hair color or gender or height, the list goes on, how many would rationalize their way to termination?

How many already do? (How many perfectly healthy, normal children are sacrificed on Molech’s altar of “convenience,” but I digress.)

Recently I responded to a discussion on a forum for the autistic community regarding someone commenting to an autistic boy’s mother that she was “sorry” about the child’s autism. I’m sure my Mom’s friends had some of the same remarks to make about me.

They knew I was different and had multiple issues – I know the constant freakouts due to anxiety and the constant doctor visits and trips to physical therapy weren’t fun. They knew I was not and would never be a normal child. No one knew why I was so screwed up, as I wasn’t diagnosed as autistic until I was 35.

Nobody wanted to deal with me when I was a child and I don’t blame them. I was a hot mess of anxiety and insecurity. If I am sorry for anyone I feel sorry for them- my parents, teachers and health professionals who were clueless but had to deal with me- terrified and sickly as I was- anyway.

I had to think about what to say from the other side, from the perspective of that child who lives life as the deer in the headlights.

This is what I replied in the forum:

I’m autistic and have lived with it for 50 years. I don’t know anything else. I have always had a profound and deep anxiety and vulnerability because the rest of the world knows I am wired differently and I don’t respond or interact in a predictable manner. To make it worse, in the 1970s and 80s when I was growing up there were scarce health or educational resources for people like me. I am hyperlexic and was advanced in reading and academics, but was hopelessly socially inept. I have very profound gross motor deficits which made me an easy target for verbal and physical abuse- first by my older sisters and their friends, then by the kids at school. Teachers did not want me in their classes because they didn’t know what to do with me. I hid in books and music and did what I needed to do to get good grades and stay under the radar.
My parents imposed strict standards of conduct and behavior with the thought that if I looked normal and acted normal I would be normal. I learned to script and act, especially after being backhanded not once for “staring” or for “not giving so and so friend or obscure relative of Mom’s” a hug. Mom meant well, but the forced interactions only turned up the volume on my distaste for physical contact. Eye contact is still uncomfortable for me and the whole concept of body language is simply vexing. I still struggle to read people.
I have been gainfully employed since age 16. I have a business degree and have been a parts manager, and a fixed operations manager in various car dealerships. By age 30 I had serious health issues due to anxiety: uncontrollable high blood pressure (still takes high doses of 6 meds every day to control) and severe panic attacks. At age 35 I was finally diagnosed as a high functioning autistic and got proper treatment for the anxiety and depression and panic attacks. These issues do not “go away.” Meds help (Prozac and Catapres) but it’s management, not a “cure.”
All this being said, I would not wish my wiring and all the physical and mental health issues that go with it on anyone. Even so, I cannot imagine being any other way. My particular manifestation of autism is a double edged sword. I see and experience the world in ways others don’t and can’t understand, but I miss much and can’t experience the world like the “normals” do. I thank God my son (age 28) is neurotypical and that he doesn’t have anxiety or the motor and visual deficits I have. He sees the world in a way I can’t. This being said, I have still had and continue to have a full and accomplished life by the grace and mercy of God. I am not sorry for the way I was made even with its disadvantages and challenges.

I still have to ask a valid question (again playing devil’s advocate.) Is my life worth the aggravation I imposed on others?

That’s the question at the heart of eugenics. Which people are worth the investment of resources and which aren’t?

If the traditional Christian teaching that the humanity and worth of an individual begins at conception is edged out by the rationalizations of the various Molech worshippers- whether the altar is one of convenience or of genetic imperfection, then whose lives are valuable and whose are not?

Is my life less valuable because of the way I am wired, or even because of the fresh hell it has to be to try to raise an autistic child?

It’s already considered “acceptable” among many to abort children with Down’s Syndrome because it can be identified via genetic testing. In some countries almost all Down’s children are aborted, even though people with Down’s can live happy, fulfilling and productive lives.

Either we believe that life is sacred even when it is imperfect or frightening or inconvenient or we risk losing our humanity.

The reality is that the human condition includes suffering. Not that we should strive to cause more, but that our attitude should be that people’s lives are worth the aggravation and worth the investment.

Today it’s seen as a travesty if a child is conceived at an inopportune time, or if he or she is the wrong gender or he or she has certain genetic faults.

Where did we get the hubris to think we were in charge of the process?

I’m not sorry to be alive. I’m not sorry I’m autistic. I am sorry that the world is coming to such a pragmatic and utilitarian place that we fail to value life even in its more challenging forms.

It’s been awhile since I have been here.  So much has happened since my last post. 

I’m finally living in my grandparents’ old house.  It feels like home, and I haven’t been home in a long time. 

I thought the trains would bother me, and maybe they will when I can turn the air conditioner off at night.  I do hear them above the A/C, but more as a backdrop rather than a theme.

Jerry is terminally ill, permanently disabled and all that.  The pulmonary fibrosis is only getting worse.  He lies in that bed with the oxygen box on alternately sleeping, then barking orders, often unintelligibly. 

I don’t know what to do.

The move here was horrible- Jerry wanting to hang on to every worthless piece of crap, and me just wanting to snag the essentials and get him the hell out of there.  I couldn’t keep everything, and with the limited amount of time and help I had it was surprising it went as well as it did.  

I am setting myself up for living alone which is almost a comfort when Jerry has his explosive coughing fits- and irrational fits of rage. He is often positively evil to me, and I don’t know how to respond.

It’s getting creepy being around him.  

And even in the midst of this I have been most pleasantly surprised by the chance appearance of an old friend from the very distant past.

He is not the old friend/ former paramour that I have obsessed about for the better part of 20 years and whom I pretty much have written off. He’s someone who has never been on my radar screen until now, even though I’ve known him casually for the past 35 years or so. 

Here’s to old middle school admirers who I never knew I had.  When other guys were chasing my oldest sister he was watching me from a distance.  Fun to find out after all these years.  And even now it is oddly satisfying to hear a man say that,”fucking your sister would be like fucking a fence.”  I had to be catty and add my thought that he would have had to tie a board across his ass to keep from falling in the abyss.  Comedy is indeed the flipside of tragedy.

I am both pragmatic and cynical enough not to get my hopes up. I have said it forever that when Jerry dies I won’t seek a replacement, but I won’t turn down an upgrade. 

I have shared some insights on what it is to go through life as an autistic person from time to time. It’s funny because there is so much being said and done about accommodating children on the ASD spectrum but there is next to nothing said about what happens to these children as they become adults.

I sincerely understand what challenges autistic kids go through and what sheer hell growing up on the spectrum is, especially when you know you don’t belong, and no one, especially your own parents, knows what to do with you.

In their defense, they tried. Doctors had no answers. All they could say about the 2 year old who could read the dictionary but did not want to be touched, who was terrified of anyone who was not an immediate family member, was plagued by night terrors and screaming fits, and could not walk or run properly without falling, was I had “congenital gross motor deficits.” Physical therapy for my gross motor deficits was nominally helpful, as was vision correction. I am coordinated enough to drive a manual shift car and walk across a room without falling. I eventually got to where I could ride a bike and rollerskate, but much later than most kids and not as proficiently. Nothing anyone could do could assuage my anxiety and social ineptitude. I have worked with psychologists and counselors (some good, some bad, and some positively abysmal) but to this day I still struggle with both anxiety and social ineptitude. I have had to build my own roadmaps and navigate my own way.

Medication (Prozac and Catapres, prescribed by a one time family doctor who had some understanding of anxiety, depression and autism) and educating myself have been helpful in this endeavor, but there is no “manual.” There simply isn’t much help out there for people like me.

I had to figure out how to script, how to mask, and how to put up a good front to survive. It’s good that the bullying and mocking isn’t as widely tolerated (and sometimes even encouraged) as it was in my youth. Perhaps there are ill-coordinated, awkward, badly dressed, terrified, myopic, autistic girls like I was who don’t get thrown in the bushes or tossed head first into the trash cans every morning at school. That would be a start.

However well intentioned early intervention and active assistance for autistic children may be, the challenges and the social dystopia don’t disappear when one turns 18. If anything, life becomes more painful and complicated and isolated because there is a dearth of help or advice for autistic adults.

I’m 50 years old. I grew up in a poor backwater town where educational resources were sparse at best. On my first day of second grade the teachers were arguing in the hall because neither of them wanted me in their class, and both claimed that the principal had promised each one I would not be in either teacher’s class. Eventually they came to an agreement, in which the teacher with the least seniority had to take me. I am hyperlexic and could read before I was two years old. The teachers in elementary school were intimidated by my vocabulary and reading ability. They didn’t know what to do with my constant freakouts- like when bees or wasps would fly in the room and I would lose it in terror at the sight of flying insects. They had no idea what to do with me, and in retrospect I can see that my mere presence freaked them out. I don’t blame them. I wasn’t normal. I didn’t look normal and I didn’t act normal. I hated (and still have trouble with) maintaining eye contact with people. I don’t like being touched.

I have no explanation for my reading ability or the compulsion to read everything I could find in print, but I am thankful that I was verbal at a young age. I was probably spared a great deal of injury and abuse simply because I could speak out to some degree.

Even though I was verbal and quite literate very early, I still have issues processing emotions and making my needs known- or even knowing whether or not my needs are valid or appropriate. My constant and intense anxiety (which has not gone away with age) makes it difficult for me to communicate when I am stressed. I was easily intimidated and was routinely beaten up by my older sisters and kids at school. I was an easy target. The terror, insecurity and reticence to speak out or to defend myself remains.

My own mother would backhand me for “staring” when she thought I was too focused on someone or something, or for being “rude” for not hugging and kissing on people who were her friends, but who I didn’t know from Adam’s house cat. Physical contact of any kind is uncomfortable for me unless it involves a close family member (and then only in certain situations)- or a dog. My aversion to physical contact has gotten even more acute with age.

To make my childhood even more fun I had chronic health issues-including constant respiratory infections and a bout of rheumatic fever that has led to heart arrhythmia, joint damage and constant pain. I have ongoing difficulty with spatial perception which I am sure contributes to my poor gross motor skills.

On the plus side I have managed to stay gainfully employed since I was 16, my son is thankfully neurotypical and doesn’t have my wiring issues. But life on the spectrum is different. It’s hard to know where you stand with other people.

William Shakespeare once wrote,“All the world’s a stage, and we are merely players.” This is so true for me when my every interaction with other humans must be carefully analyzed and scripted, and even then I am terrified of being inappropriate, using language that doesn’t resonate with my intended audience, and sending the wrong body language. To make it worse, when I’m tired, sick or stressed, my ability to script and filter goes right out the window. I am not normal. I can put up that front, but it has a very high cost. The older I get the more maintaining the “normal” facade exhausts and depletes me.

I understand I am the one with the disparity and I am the one who has to be accommodating and I have to adjust. No one is going out of his or her way to make my life easier. This world wasn’t designed for people like me.

At my age some of my idiosyncrasies get a pass. I dress how I want for the most part, and can decline most social activities outside of work that I deem stressful. It’s a mixed bag.

I wouldn’t say that being wired the way I am is easy but then again it’s the only way I know. I still have more questions than answers.