Wednesday, May 14, 2008

Cars, Socks and Asperger's Syndrome

Here is our new car. 2004 Kia Rio. And it's really a manual. Hand crank windows, no electric locks and manual transmission. I'm not complaining about the lack of electronic gadgets. Manual are much easier to fix if they go out. It's got good AC, lights that work, a place to store my driving glasses... It's a good car for us.
And here is the progress I made on my Bones sock yesterday. I had Big Foot aka Youngest Son try it on and it's not snug at all, so I'm sure it'll fit Seeley aka David Boreanaz.

Not much else happened yesterday. Little grocery shopping, a trip to the library, and that's about it...

From a discussion on one of Ravelry's forums concerning Autistic Spectrum Issues:

Poster: I’m just hoping that one day my daughter will have the skills and the courage to go out into the world, and to make a life of her own as you have.

I hope that she figures out coping strategies to help her deal with sensory overload and unpredictability. I can really do little more than just love her, when she is overwhelmed.

My response: I don’t feel I have a life. I spend most of my time figuring out how not to have to interact with people and the rest of the time terrified I will have to. I don’t think any amount of skills would have changed that. I really thought about it this morning, and it’s about a 50-50 chance no matter what I do, it’ll piss someone off. So now I try to do what doesn’t upset me.

Of course it’s taken 50+ years of trying to be normal for me to get this jaded. My kids and grandkids still try to do it “right” but they have more reserves of energy to do it. I hope it’ll be different for them, but I don’t think it will.

And something to remember. Doing the things you “make” your daughter do gets her to do them. It doesn’t change the anxiety they produce inside her. So each time she “has” to perform according to the standards set by someone other than herself, it produces anxiety within her. The anxiety may or may not create physical symptoms (such as stomach issues, etc.) but for sure it will create psychological issues of tension, fear, or a mental scraping of fingernails on the chalk board. It doesn’t change with time, either. I can make eye contact. But it always, always, always creates a gut wrenching anxiety within me.

I guess giving her the tools to “pass for normal” is an okay thing, but I just don’t know how good it is to insist she use them. I worry about this all the time with my kids and grands on the spectrum. It took me years and years to understand that everyone didn’t go through this agonizing anxiety every time they walked into the store, answered the phone, went to school. I thought everyone had a garbage disposal grinding inside when they had to interact. So I pushed the feelings down and down and down until I almost had a breakdown. Well, I suppose that some would say I did, because I walked out on my family and tried to start all over.

I’m not criticizing your beliefs. You, like every other parent, has to do what you think is best. And I don’t know that what you are doing isn’t the best. But I still come back to my original question for these kinds of forums:

Why do I have to change my behavior to make NTs comfortable? If your answer is, “Then less NTs would single you out to pick on you,” that is an untruth. It’s always a crap shoot whenever someone on the spectrum interacts with an NT. They still know we are “faking it”. Some are still nice, most aren’t. They can single someone that is different out of a huge crowd. I’ve had someone I’ve never seen before walk into a room full of people, make a bee line to me and start being abusive. I’ve seen kids on the playground single out my aspie kids or grands and start pushing them around.

Although it may make you more comfortable your child can “act normal” I can assure you it’s not making your child comfortable.

I have a son in a wheel chair and no matter how many tools we give him to walk, he’ll never be able to do. His disability is obvious and no one tries to make him pass for “normal.” My spectrum kids and grands and I have invisible disabilities and people are always trying to make us pass for normal. I don’t get it…..

I’m sure this post offended someone. I apologize in advance, but I know no other way to speak for the spectrum people that can’t speak for themselves. You have no idea how debilitating being forced to act “normal” is.


  1. Lizzie, I haven't gone what you have been through but my family is big on the mental disorder front.

    We pass, most of the time, except when we need to call in sick for a week, month to get back to feeling normal.

    I felt your advice was on point and valid and I send hugs to you and your family and hope that everyone will be tested less often.

  2. Oh, how I remember being 12 and crying, "Why can't I just be ME?!?" during an argument with my mother (over what? fitting in?) Lizzie, I don't think you are "jaded" for abandoning the effort to meet the expectations of others - it is something that occurs naturally in one's 50's. We run low on psychic energy for the bullsh*t of life. For example, I've finally given myself permission to pass on group gatherings - to me, they are not fun but exhausting. And Lizzie, you *do* have a life, it's just not the life others think you should have.


I really am glad you're commenting. Please make sure I can find you by insuring you leave an e-mail address. It's so frustrating to have someone ask a question and no way to answer them! Thanks!