Trial, Error, Adjustment (#573)
A Little More Free (#575)

Proteus in Autismland (#574)

This is the central dilemma that I face when, Charlie asleep (melatonin has been working), I sit down at night to write:
If I describe the ugly, bad, smelly and messy of Autismland (here is one such account whose language occasionally approaches the incantatory quality of Howl), what is my intent? To attract not only attention but pity, fear and sighs? To say, this is the awfulness of autism? To garner sympathy?

And if I describe words said ("Huggg!" "Canneye havv hum'uss") and the sun-driving-away-every-storm-cloud smile; the good, the beautiful (the ancient Greeks have a special term for this, kalokagathia---"beautiful goodness" and "good beautifulness"); the accomplishments---the miles biked, the piano playing, am I just being a braggart steeped in denial, trumpeting Jason McElwain-esque moments that only some few autistic persons---not the ones with "severe, full-blown autism"----do?

My son has full-blown autism. My son did all those things evoking "autism nightmare night and day" (well, not the smearing of that stuff on the walls and furniture: he has not had any to smear in a number of days and I strongly suspect his stomach must have been hurting); in the car as I drove him back to school after a fine visit at the dentist; at school and especially at the end of the day so that his teacher was ready to take the bus home with him; at home, on a walk, in the kitchen where the linoleum dug into my knees. I have a lot of hunches why, that dentist visit---Charlie had to be held twist-tight by the hands as his teeth were polished, but it was real progress over previous visits---changes in medication----serious health issues in both of Charlie's grandparents who we live with----a warm January day of thick fog and mist----

How, you say, is she going to twist this disastrous day into something "posautive"?

As I sit here typing and drinking waterchestnut tea (my mother says it's leng, that's Cantonese for "cool"), I think of Charlie writhing in and out of my hands and I know what it was like for Menelaus, the King of Sparta and husband of Helen of Troy, to try to hang onto Proteus, the Old Man of the Sea, in the ninth book of the Iliad or like Aristaeus, a minor god who was the deity of the farmer's arts and the inventor of the plough in the fourth book of Virgil's Georgics. Both Menelaus and Aristaeus are told by a sea nymph that they must catch Proteus sleeping in his cave and hang onto him to find out some information, some prophecy, some wisdom, of what they need to do.

Proteus is a tricky one and changes shapes:

..................a menagerie
of shapes and faces he puts on he plays
suddenly bristling boar dark dismal tiger
scale sheathed snake lion tawny maned
makes the cracks of a flame.....

I don't know I managed it but I held onto my Proteus boy and, after Jim came home, we got ourselves into the car and drove and chanced upon the Nautilus Diner, where Charlie was the Gent, sitting in a booth with fries and coleslaw and a burger, and several requests to have Jim dab it with ketchup. ("Humm'uss yes!" "Pal, it's ketchup." "Cassupp. Cas'ppp." "How about 'can I have ketchup, Dad?'" "Caneye havv---havv--" "Ketch-chup." "Cassup, cassup, yes!"

"Dilemma" is from the ancient Greek words di, "two," and lemma, "premise, thing taken." When you write about life---about the every day---of autism, you do indeed have a dilemma, how to get in all the ugly, bad, etc. and also the kalokagathia. Some might strive to keep these separate----as if the latter are "things to remember" and the former "things to forget." Myself, I like to mix things up; I like to stir the pot, sully the neat-cut strands of noodles with a spoonful of brown sauce, turn up the heat so the flavors meld together and the bits of minced ginger dissolve.

A tinge of sour with bitter on the side, sweet, salty:

This is the fragrant aftertaste of another day in Autismland.



I can certainly relate to the unique challenges of the dentist office. It takes both of us and an assistant to hold Edith down for checkups and cleanings. Unfortuately, perhaps due to some of the medicines Edith takes, she has a lot of trouble with her teeth.

It is impossible for the dentist to treat any fillings at all without Edith being put under. Dentist appointments are an extra hour long, as she is given Adavan one hour before the actual appointment in an attempt to calm her down enough to perform a checkup or a cleaning. Any other dental work, is out of the question.

Last year we had to put Edith in the hospital so that she could be put to sleep while the dentist worked on her teeth. Our medical insurance paid for the hospital and the anathesialogist (sp?). The dental insurance, however, did not cover much. We had to get a loan to handle the $1000 plus dental bill.

We are once again facing the same dilemna.

I don't see your postings as neither an appeal for pity, nor bragging. I see them as sharing your experience as the parent of an autistic child that brings a lot of special joy into your life and makes it better. I appreciate you for sharing your experience with Charlie. It helps me as the parent of an autistic daughter.


Shortly before I read this post, I was thinking about the Norse trickster, Loki. He's a shape-shifter who travels between different worlds of the giants and the gods; also the water (as a fish), on the land (as a mare), and in the sky (as a falcon). Yet he never seems to belong to any specific realm.

I see myself as shifting between worlds, at work, with friends, with my family, with my cat, by myself (including exercise and meditation to alter my mood), and speaking to other autistic people on the internet, which is where I feel most feel at home. I'm not as adapt as Loki (or as neurotypical people) at moving from one realm to the next. I was also thinking earlier, I'm not a trickster either. But your post got me thinking about Loki bringing good things to the gods, as well as causing much mischief. And I realized that relates to my own experiences of Asperger's and trying to exist in the world of "normal" humans. I do my best to celebrate the wonderful and deal with the frustrating parts. There's no way to separate the two - and I wouldn't have it any other way.


Categorization - Kristina's blog
a] sharer
b] pal
c] jolly big brain - handle with care


It is good to see the joy you take in Charlie's accomplishments.

As for the rest, shit happens -- I try my best not to dwell on it, and console myself that some NT parents have it worse, at least briefly. The NT toddler twins "decorating" their room at naptime and the mother's account of the discovery & cleanup had me thinking, "Thank goodness that's not me." Also, all the accounts of trips to the ER with NT kids born prematurely with breathing problems lasting well into toddlerhood have also had me thinking, "Thank goodness that's not me." I'm sure some of those mothers look at what I have and think the same thing; we all just play the hands we're dealt with, vent in safe places, and go on.

As for the dentist -- both boys have to be held by Mommy in the dental chair at this point. I don't know who is going to be able to sit on his own first, the "severely" autistic 5-year-old or the "most likely to be NT" 3-year-old.... 3-year-old "mild to moderate" autistic girl can sit by herself, but would prefer not to have her teeth polished unless she's sitting on Mommy.


I really like your comparing life in Autismland to greek plays. In the comedies as well as tragedies it seems to me that there are elements of both in each (if you see what I mean), just like real life, plus the choruses commenting & looking over our shoulders. :) Life's best when it's a package deal, & less boring, too (although boring can be nice...).

Kristina Chew

Monday was a big dose of "not so much fun"---hoping that'll last for a while (yes, today was a lot better---more boring, as you'll see......). The dentist also thinkgs Charlie is a candidate for braces in the ever nearing future --- my main thoughts are 1) getting them on Charlie and 2)keeping them on Charlie (one of his front teeth is at an angle because he kept pushing on it with his tongue while it came in). Thanks about the Adavan, had not heard of this; Charlie used to sit in my lap for the dentist, so many years ago! It helps me tremendously to write about Charlie---to help order too many experiences, somehow.

Needless to say, knowing so many others (in so many different shapes) go through similar experiences, does not just help, it truly gives me hope.

Wade Rankin

None of us can define the autism and its impact in a way that is meaningful for another. Thanks for always being non-judgmental when you write, and when you read what others write. Autismland is not my favorite place to live, but it is better because you and Charlie are there.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Your comment could not be posted. Error type:
Your comment has been posted. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.


Post a comment

Your Information

(Name is required. Email address will not be displayed with the comment.)