The Meaning of Autismland: Why I see autism everywhere

My husband Jim coined the word “Autismland” sometime in 2000 when were living in St. Louis, Missouri. We used to get the Chicago Tribune on Sunday and always noted the “Chicagoland” section, and one day Jim started talking about “that’s what it’s like to be in Autismland,” and the word entered our vocabulary. In December 2006, Autismland became the name for my blog about Charlie which had originally been titled My Son Has Autism.

So what does “Autismland” mean?

At some times I have used the word to refer to something like “the autism community” or “all of us parents of autistic children who are in this together.” This last usage does not, you will note, include mention of autistic persons and especially autistic adults—-and does not do justice to the differing views of autism parents and adult autistics on some topics—-and I do not (I think) use “Autismland” in this way anymore, or at least not regularly.

And, in truth, that is not exactly what “Autismland” means most of all to me. When Jim and I first started using the word, it would be when we would be out, nowhere in particular, and realize that Charlie was not the only “special” or “spectrum” child (as this moment on the beach last summer) or, indeed, person of any age; when we would see puzzle ribbon magnets on a half-dozen cars in one parking lot here in New Jersey; when Charlie did something that we had known him to do on occasion and even understood a little, but that yet was completely surprising to bystanders and the friend we were having dinner with (Charlie, after a nice dinner at a Vietnamese restaurant, once ran down a street in Philadelphia’s Chinatown tearing off his clothes; Jim caught him before he got down to his shirt). “Autismland,” Jim and I would nod, or shrug, to each other. As in, autism is so much more visible—-autistic children and persons can be so much more visible—than they used to be: There is a lot more autism, just as there is a lot more awareness of autism.

Autism is general all over the US, if not all over the world (as research like this epidemiological study in South Korea suggests).

By “general,” I am referring to the way James Joyce uses that word in the closing paragraph of his story The Dead:

Yes, the newspapers were right: snow was general all over Ireland. It was falling on every part of the dark central plain, on the treeless hills, falling softly upon the Bog of Allen and, farther westward, softly falling into the dark mutinous Shannon waves.

Snow is falling all over Ireland; it is everywhere, it is pervasive, just as autism has become in our own society today (fueling calls of an “autism epidemic“). It is only at the very end of The Dead that the snow starts to fall so steadily, starting with “a few light taps upon the pane.” Within the arc of the story’s plot, the covering over of all of Ireland, of all of the world, with “flakes, silver and dark”–the snow contains elements of light and darkness both—makes sense because, just before this final paragraph, Gabriel, the story’s protagonist, has heard a more than surprising revelation from his wife, Gretta. The Dead is about a Christmas party at the house of Gabriel’s two aunts in Dublin a century ago. Guests are shown arriving, a Christmas repast laid out, there is music and dancing and snatches of conversation are overheard; Gabriel, who is a writer, delivers his speech. Afterwards, he sees Gretta listening to someone singing “The Lass of Aughrim”: “She was standing right under the dusty fanlight and the flame of the gas lit up the rich bronze of her hair, which he had seen her drying at the fire a few days before.”

Back in their room, Gretta weeps from the thought of the song and, when Gabriel asks her what is amiss, she says “‘”I am thinking about a person long ago who used to sing that song.’” The person is not (as Gabriel smilingly hopes for one line in the story) himself, but a long-dead, “delicate boy” named Michael Furey who Gretta knew before she had met Gabriel—and, once he knows this, his memory of seeing his wife listening so rapt to the song is strangely altered.

Indeed, the reader’s perception of what has been going on throughout the scene between Gretta and Gabriel (who, upon seeing his wife’s glowing person had been in “a fever of rage and desire”) is also changed. We know that Gretta has not been thinking of Gabriel ever since Joyce describes her listening so enraptured to “The Lass of Aughrim” and we know that Gabriel is just realizing this too—is perhaps thinking back over the events of the evening in a different new light—-is perhaps reviewing the years of their marriage, knowing now that before him there was this Michael Furey, who loved his wife so much that he died for her:

Gabriel felt humiliated by the failure of his irony and by the evocation of this figure from the dead, a boy in the gasworks. While he had been full of memories of their secret life together, full of tenderness and joy and desire, she had been comparing him in her mind with another. A shameful consciousness of his own person assailed him. He saw himself as a ludicrous figure, acting as a pennyboy for his aunts, a nervous, well-meaning sentimentalist, orating to vulgarians and idealising his own clownish lusts, the pitiable fatuous fellow he had caught a glimpse of in the mirror. Instinctively he turned his back more to the light lest she might see the shame that burned upon his forehead.

And who are we but like Gabriel when, having heard the words of the diagnosis—”your child has autism”—-our faces grow hot and we struggle, “ludicrous” and “well-meaning” and “pitiable,” trying to explain what this knowledge is going to mean for our lives? What, we ask ourselves, does this knowledge that “my child is autistic and I am the parent of an autistic child” do not only to our sense of self, but to our understanding of the child we know we love so much we would walk to the ends of the earth for? The blood rushes no less passionately, and terribly, into our cheeks and through our hearts when we first know that truth—-and, too, as we learn other truths about our child as he or she grows up: That reading is something very hard to learn, that mainstreaming is not an option, that independent living is not really possible, that my child will need supports and services for the lifespan.

Once Gabriel has this knowledge of Gretta’s past, everything looks different (similarly, Portia Iversen in Strange Son notes that she felt pained to look at photographs of her son, Dov, prior to his diagnosis, as if these symbolized some happier time “before autism” was known). And yet, in truth, everything is not different: Gretta is who she is because she once loved Michael Furey, and it is Gabriel’s to know how to (as it were) adjust to a new reality about her. So, indeed, a parent has to adjust to the knowledge that one’s child is autistic, is both just the same lovely child she or he was before, but now there is this weigthy new information. I referred first to Joyce’s having the snow start to fall at the end of The Dead, but, if one reads carefully, the snow has been present in the story all along (the following quotations occur over the course of the entire story; as I am referring to an online version of the story, I am unable to cite page numbers):

“[Gabriel] He stood on the mat, scraping the snow from his goloshes, while Lily led his wife to the foot of the stairs and called out.”

………….

“But as for Gretta there,” said Gabriel, “she’d walk home in the snow if she were let.”

………….

The snow would be lying on the branches of the trees and forming a bright cap on the top of the Wellington Monument. How much more pleasant it would be there than at the supper-table!

………….

“They say,” said Mary Jane, “we haven’t had snow like it for thirty years; and I read this morning in the newspapers that the snow is general all over Ireland.”

………….

He wondered at his riot of emotions of an hour before. From what had it proceeded? From his aunt’s supper, from his own foolish speech, from the wine and dancing, the merry-making when saying good-night in the hall, the pleasure of the walk along the river in the snow.

Like autism in the world today, the snow in James Joyce’s The Dead has been a part of the story all along; has been in the background, and only comes to the forefront at the very end as Gabriel has his realization about how things really are. Perhaps it may seem something of a stretch on my part to draw on literature to try to explain why there is resistance to the notion that autism (like the snow in the story; like Michael Furey in Gretta’s mind) has always been with us. I turn to literature to describe this precisely those feelings that the parent of an autistic child, and an autistic child and person themselves, because for me the experience of being my son’s mother frequently evokes the deepest, most wrenching, most difficult, profoundest emotion in me and I do not know exactly why. And Joyce’s story, with its final image of Gabriel, gifted with a new knowledge he still struggles to get his mind around even as “His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead.”

We have simply not been looking for the symptoms of autism because we did not even know that we had to. We simply did not know that we were in Autismland until we found that we were already there and had indeed bought real estate and secured our green cards and started to study a new language.

Autism is general all over.

That is the meaning of Autismland.