Sorry? Yeah, for a Lot of Things- but Not for Being Alive, or for Being Autistic

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.

Unpredictable Grief, Hopelessly Whitebread, and Only by the Grace of God

It’s probably a sad commentary on my current mental state that I really miss my dogs today. I’m ashamed to admit it but my heart aches so much more for these guys than for my late husband (hard to say, and sad- but true.)

It’s been almost three years since Jerry died and mostly when I think of him I guilt trip because I really don’t feel sad about it. It’s like I should…but I don’t. It feels like when Mom dragged us to Confession and I knew I should confess all the unforgiveness I held on to for all the shit my sisters and their friends did to me, but I just didn’t feel the remorse. I was going through the motions because I knew I was supposed to.

This condition of knowing- you- should- feel- bad- but- you- really- don’t caused me a lot of theological cognitive dissonance, (i.e. Catholic guilt…) until I realized that it is God who grants the gift of repentance, and it is God alone in Christ who forgives my sins. This is fantastic news, because in and of myself I just can’t do it. I can’t force myself to regret or feel sorry or to forgive. Back to Lutheran theology and Christ Alone. I get the sufficiency of Christ alone, if only because I am so pathetically weak and emotionally and spiritually impaired. Luther’s explanation of the Third Article of the Creed states it pretty clearly:

I believe that I cannot by my own reason or strength believe in Jesus Christ, my Lord, or come to Him; but the Holy Spirit has called me by the Gospel, enlightened me with His gifts, sanctified and kept me in the true faith. – Martin Luther

Most of humanity, quite honestly I can do without, which may not be right, but I freely admit it. Clara and Lilo, I miss them both, and painfully at times. Even though they were dogs. I love the dogs I have now (Brutus and Lucy) and I am incredibly thankful for them, but there are days. Clara, especially, was my heart.

Emotions are just so damned complicated. Then again no dog ever did anything to hurt me, and I can’t say that about any relationship I have ever had with other humans. Especially Jerry or my sisters, because, well because. The wounds are deep and the scars profound. Can I forgive anyone by my own choice? I can only forgive by the grace and intervention of God, and it’s a long, hard process. The old Adam fights that one with a pernicious tenacity.

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I know part of the human condition is that no one gets out of life alive, but knowing my vulnerabilities and blind spots it is almost impossible for me to be open with anyone because I don’t know what weapon they are going to use against me. I don’t read people well at all. I’m fine with keeping everything on a superficial level but the deep dark secrets? I don’t mind letting others confide in me, but the converse is most certainly not true. I don’t want to rely on anyone because people use me and let me down.

I can’t say I understand what “normal” people think or feel. I’ve never been “normal” or anything close to it. All I know about “normal” is what I can see and script for navigational purposes. I put up a good front, but that’s exactly what it is, a front- a stressful and draining, but necessary, front.

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I don’t think I would have done well with the 1950s housewife gig.

I can only see where I have been and I can only navigate through the mechanics of my own wiring, which has got to be skewed. I am sure that a psychologist would have a field day with me at this point in my life. It’s been over 15 years since I’ve seen a counselor (that probably would be a good idea, but I don’t have the scratch to afford it, nor can I take time off work.) There’s been a ton of crazy shit that has gone down in my life since then.

Oh, yes, crazy shit. Living with an alcoholic and the insanity and crazy-making that goes with that for 20+ years does wear one thin. Then he gets a terminal disease on top of that…which makes him even meaner and more irrational, even though at first he does try to do the right things to a degree. Add having to watch your best friend die, then having to dig her grave, (and I am referring to Clara, who was a dog, so don’t get any macabre ideas) then having to move in a fire sale, desperate sort of way, all while my terminally ill, alcoholic husband is screaming and raging as much against me as he is his inevitable death.

It’s hard to write that. Maybe the delayed reaction is kicking in after all. PTSD – the gift that keeps on giving. We can add in all the other right psychological terms too- learned helplessness, chronic anxiety, and our miserable old companion major depression, who is always camping out on the door mat waiting for the slightest opportunity to slip in the door and come in to stay for a good long time. It doesn’t help that anxiety and depression go hand and hand with autism, and there is mental illness galore in my family history. I even took one of those genetic screening tests for shits and grins (as if I didn’t already know my ethnic ancestry…oh yeah, living advertisement for the Most Whitest Anglo Saxon Ever…)

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The ethnic info was no surprise. It also showed I carry specific genes that increase one’s chances of being bi-polar, and of suffering from major depression and schizophrenia. That explains Mom’s family…and her to an extent, which is scary as hell because there are days when I seriously doubt my mental stability.

Sometimes I want to scream, cry, sleep, run or stage a twisted combination of all of the preceding. I’m afraid to even mention some of the good things happening in my life (and there are a few, and I thank God for everything with everything I can) because I’m not convinced it’s really real…and I’m afraid I’ll jinx it if it is.

There is something deeply sweet and undeserved about being able to be safe and loved in one’s home, and that is both majestic and terrifying because I have never been in such a place before.

There’s still a LOT of pain- emotional, spiritual and always, physical, and I don’t know where that’s going to go. I think it wants to translate into fear. I don’t want to give in to fear. The panic attacks are thankfully getting less frequent and less severe but they still happen. As for the arthritis flares, medication usually keeps it down to a dull roar, but when the fire is on, it’s on, and not much will touch it.

I spend a lot of time in sacred music and Bible reading these days even though I know that forgiveness and healing are not things I can do- but what God does for me.

Kyrie Eleison…