It was a phone call, but not the one you imagine: not from the police or the paramedics, or the hospital. It wasn’t a car crash, or fire, or my back turned for just a second at the pool. My son’s preschool teacher gave me a number, and I called it. I didn’t think anything might be lost until the woman answered the phone: “hello, Early Steps …”

Yes, the signs were there, but I had refused to look.

I don’t believe you begin to fear losing your child as soon as you become a parent – it takes about three minutes. That was my experience, anyway. This may be entirely a factor of my psychological makeup. Or it could be the fact that was the time I had with my son before he was being wheeled away from us – my wife and me, and his twin sister – and into the neonatal intensive care unit.

When he finally came home over a month later – after blown IVs, a central line, a tangle of wires and monitors, charts and antibiotics, and a closer brush with death than I had let myself imagine – I thought we had him. I mean, I really thought we had him, and that nothing could take him away again. Of course this feeling didn’t last. Gradually, I again began to fear that he might somehow be slipping away – that I wouldn’t be able to hold on to him. I wonder if, in a way, every parent feels this, or just this one, or if it was something about my son.

I should back up and make things clear: my son is alive and healthy, and with me every day, and I thank doctors, and nurses, and God, and whoever else I can think of for that. I’d thank Satan if I believed in him, and thought he had a hand in it. His stay in the NICU was the result of a confluence of issues mostly related to prematurity, and then a serious infection he developed in the hospital. The issues resolved, and the infection was stopped. I didn’t lose my son, and it is the height of self-pity for me to even think it, when people lose their children every day. I lost an idea, a fantasy – of who my son was going to be, and maybe me as well.

“Hello, Early Steps Autism Study, can I help you?”

Two weeks after the phone call, we began a series of appointments. And I began to hope as hard as I possibly could. But at that point I wasn’t sure what to hope for anymore. Do you hope against the diagnosis, or the symptoms?

We are sitting on the floor at the end of our third appointment. The floor seems harder than a normal floor – the carpet less comforting, like they skimped on the pad.

“I know this is hard to hear,” she starts.

Lady, you have no idea. How could you know?

I hate this room, I hate this building. Are the cameras still recording? I want to tear them from their tracks and grind them into the carpet with my heel.

Finn has finally cried himself out, and is slumped over my thigh, asleep, his head resting on my knee. I feel his slow, steady breathing, and it is the only thing keeping me sane. What the hell is up with this room? It is small and everything in it gray. There are doors at each end, and for some reason the corners are cut off, giving it an octagonal feeling, like an airlock, or a gas chamber. There aren’t any windows, but I can feel them watching. Two small cameras travel on metal tracks up and down and along opposing walls. They are round, and sinister and unnerving. The place makes me feel autistic.

That last claim is a hard one to make, since I have no idea what it feels like to be autistic. I don’t even know much about it, other than it is mysterious and devastating, and fascinating, and that just being this close to it feels like I am stepping into the abyss.

Are they still watching? I want to open the door and make sure there are no pimply graduate students watching the worst moment of my life.

“Just play normally, like you would at home, and try not to turn your back to either of the cameras,” the psychologist had said before she disappeared behind the door.

Suddenly I could not remember quite how to do what I do every day: play with my son. He didn’t help – he hates this place too. He slumped in my lap not wanting to do anything. Please, Finn, please, we have to play. It’s these toys! Jesus, where did they get these lame toys? Who would want to play with these things? It isn’t really the toys.

Earlier she brought in a shape puzzle. Oh shit, we should have played with more puzzles, I thought. We should have studied harder. This is my fault, we never play with puzzles. Finn did the puzzle. Then she pulled blocks from the gray plastic bin. Finn, you can do blocks – we do blocks all the time! He wouldn’t do the blocks. Goddamnit! What is wrong with these blocks? I explain that he does stack blocks at home. I’m treating this like an audition.

What I do know, is that “autism” (the word, not the disorder) was created by a 19th century Swiss psychiatrist, Eugen Bleuler, trying to describe aspects of schizophrenia. Its root is the Greek word meaning, “self”, and Bleuler was talking about withdrawal from the outside world into an inner one of isolation.

In 1944, Dr. Leo Kanner of Johns Hopkins, applied the word to a group of eleven children he was treating, “who had in common a pattern of behavior not previously considered in its striking uniqueness.” Kanner may have been the first to give a name to the disorder he eventually came to call, “early infantile autism,” but others had noticed it.

In the late 19th century, British physician, J. Langdon Down worked with children who were known then as, “morons”, “imbeciles”, and “idiots”. In his honor, “Down’s Syndrome” was named for him. Down also described a group of children, distinct from the others, who were:

self-contained and self-absorbed. Speak in the third person, …[are] fearless as to danger, perservering in mischief, petulant to have their own way. Living in a world of their own, they are regardless of the ordinary circumstance around them. [Many] have a fascination with music or an extraordinary memory.

To describe this special group of “idiots”, Down added the modifier, savant, from the French verb savior, meaning “to know”.

But before anyone tried to identify or name it, it must have been there. The twins, Remus and Romulus, supposedly raised by wolves, and founders of Rome, established the myth of the “wild” or “wolfboy”, in the popular consciousness. Real or imagined cases of “feral children” have appeared across the centuries.

In 1800 a child was found wandering the woods outside to town of Aveyron, France. The press dubbed him “Victor the wild boy.” Lacking the ability to speak, he lead people by the hand to show what he wanted. He had a strong preference for meticulous order, despite what I can only imagine must have been a disordered living environment. Contrary to the romance of the myth, it is now believed that wolves had nothing to do with Victor, and that he was likely an autistic boy abandoned by his parents, or who had run off and become lost in the woods. I like to give his peasant parents the benefit of the doubt.

I tell her Finn is usually much happier. But there are things I can’t deny: the lack of eye contact; playing by himself, but not really playing. Has he ever given me anything? Christ, I don’t know. Maybe he hasn’t. Does he always babble in that sing-song way? Yes, is that bad? When did singing become bad?

I feel like loveable pieces of my little boy are being taken away – his singing, his crazy laughing, his flapping arms – and made ominous. I can’t laugh with him anymore. It is all a sign of something not processing correctly – getting lost in an endless loop, a thunderstorm of disordered synapses – deep in the unmapped continent of his brain.

I want to break out of the room. I want to take my son and drive like hell out of this city, out of the rain and the gloom, south across states and into sunshine. I want to watch him run and laugh, and flap his arms on a beach under blue skies. I want to laugh with him, and scoop him up in my arms, and hold him close in front of the frothing surf like an ad for family vacations we will never take. I want to hold him tight until his kicking and back arching stop, and he relaxes into my shoulder, his head nuzzling into my neck. And I want to cry.

“I know this is hard to hear . . .”

Lady, I can’t hear you. We are far, far away from here. And all I can hear is my son’s rhythmic breathing blending with the sound of the waves. And I am crying, I am heaving those big, shaking sobs that wring the ragged anger out of your chest, and leave you with a sadness that is finally smooth and slow. Cool tears run down my cheeks, but it’s OK. The sand soaks them up, and they become part of this beautiful blue ocean.

I nod. I look up. I’m not on the beach. I know what she, the developmental psychologist, is about to say. I am not crying. I want to, but I am holding it off, saving it for when we get back to the car, in the concrete darkness of the parking garage.

She tells me autism is mostly genetic. But it may be like heart disease: a set of genetic factors that are influenced by exposures or lack of them. I feel worse immediately. I want to go back and do everything over. I didn’t hold him enough when he was in the NICU. I didn’t smile enough. I didn’t talk baby talk enough. I did this, it’s my fault. Having twins was too demanding, and I didn’t know how to cope.

This week I was going to look into college savings plans, now a behavioral scientist is talking to me seriously about whether my son can learn to communicate. She tells me about the courses of action that seem to produce the best outcomes, and that we have been assigned to the control group of the study, and won’t be receiving the free intensive therapy. How can you do this – it’s unethical? I know why they do it – I just don’t want to be on this side of the coin toss. I will do better. I will get him better help. I will work harder. I can do this. I don’t know how to do this. I can’t do this.

“You can’t do everything,” she says kindly, “if there was one thing I could inoculate parents against, it is the thought that they can, or need to do everything.”

I will do everything. I will find out things that no one else knows about, and I will do those too. I don’t know what to do. I have no idea what to do.

“I know this is hard to hear …”

Christ, it must be if it is this hard to say. Finn has been diagnosed with autism. This is what I can barely speak of. I need to talk with people about this – at least that is what my kindly mental health professional tells me. But the word catches in my throat – makes me stammer, and my eyes water.

What does this mean? Fuck if I know. I barely know what autism means in general, and no one knows quite what it will mean for Finn. I replay the conversation with the psychologist in my head. She talks about whether he can learn to speak, and therapies and intervention programs. All this aimed at ensuring he is able to achieve his “best possible outcome”. There is something about this type of positive language that is unnerving and discouraging all at once. The variety of possible outcomes within the category of, “autistic” is wide, but most of them are not what a parent (or maybe just this one) hopes for their child deep down.

The thought that no matter how much you love this little person, they may not ever be able to connect or relate to you or the rest of the world in a way that you expected, or experienced, or understand is overwhelming. Nothing is ever quite what we imagine. At any time your child could become injured, or ill, or a meth addict, or a born-again Christian Republican. Your heart can, and probably will, be broken at any and many times. But no one is ready to have it broken by a beautiful little boy who is not quite two. No parent wants to have to hope that their child will end up a “high-functioning” anything.

A week later, I hear a piece on the radio by a man who was chief of psychology at a hospital somewhere on the east coast. Suffice it to say the guy knows more about this stuff than I do. “The first time I saw my son flap his arms, I nearly threw up,” he begins. He was with his family on vacation in Hawaii, attending a hotel luau. His son was flapping his arms because he was excited, and the father recognized it as one of the early signs of autism.

I look over from the sink and watch Finn flapping his arms as he approaches one of his favorite things: the dishwasher. I don’t throw up, but I sit down on the kitchen floor and hug him, and cry. Once your fate starts addressing you through your kitchen radio, it is hard not to pay attention.

The father/doctor on the radio goes on to talk about how he and his family were tested in ways that he never imagined. He listed a parade of horrors related to his son’s autism, including losing the ability to speak, developing seizures, and his confinement in his own solitary world. He says he knew then, at the Luau, that he would never be able to play tennis with his son the way he and his father had, or have the type of relationship he had imagined.

His conclusion is not upbeat, he does not come to a place of peace or acceptance, or tell me how much he has grown from his son’s condition. For this I am grateful. I do not feel hopeful, I do not want to accept this, and I find it above arrogance to consider my son’s affliction an opportunity for my own growth.

Instead, he says simply that he now believes what he tells his patients’ families when they ask him what they should do for their loved one: “you do your best.”

It is virtually implicit that your best isn’t good enough. Your best will not cure your son. Your best will not pay for all the therapies that might help him. Your best will not invent a drug, or rearrange synapses. Your best basically sucks.

This is the part of the made-for-TV movie where the dialogue should fade, and the music come up over a montage of scenes of me working with my son, and staying up late reading books and articles so I can find the cure that has eluded everyone else. Basically, I am supposed to stand up and be a man. I feel I’m folding up like a card table.

So that’s what I’m left with: my best. It won’t be enough, but I’ll do it. I promise I’ll do it. I don’t know what it is, and I doubt I will ever feel like I’ve done it, but I will – I will do my best.

I will do my best at understanding a disorder that basically no one understands, at finding and consulting experts, at hiring therapists and graduate students, and figuring out who should be on Finn’s “team,” and how all their schedules will mesh. I will try what has worked for some, but not others. I will do my best to be hopeful without having unrealistic expectations. I will do my best to keep my expectations high, so that he can rise to meet them. I will do my best to help him learn to play and live with us, with his sister and his peers. I will do my best to teach him how to point at things he wants or are interesting. I will do my best to work down the list of skills from pointing to empathy. I will do my best to make it all work.

And I will fail. Every day I will fail a little bit. I will lay down, too tired to retrain his energy from jumping, to crayons. I will lose the patience required to direct him to drive his cars on an imaginary highway, and let him continue to turn the wheels, engrossed, fascinated, lost to me. And I will hope, despite my constant failings, that my son will shine!

If you know what my best should look like, please tell me. Sometimes it is hard for me to know. But don’t tell me this is a trip to Holland: that I was planning a trip to Italy, and instead ended up in Holland. I’ve been to Holland. Holland is excellent. I like Holland better than Italy. The Dutch are excellent, like Australians who’ve bothered to read a book. This isn’t Holland, this sucks. Do you think the Dutch might be pissed that we think of them as the Island of Misfit Toys? Why are all our broken supposed to be from Holland for Christsakes?

(Author’s note: If I’ve lost you here, don’t worry, it is doubtful you are alone. I am referring to an essay written by Emily Kingsley, printed and made famous by Dear Abby. She talks about having a child with special needs as being like having planned a wonderful trip to Italy only to be diverted to Holland, and then discovering the many, unexpected charms of Holland. It is clever, inspirational and even a bit heartwarming. I am certain it has provided comfort to many over the years. If I were a better writer, and a better person I might have come up with something like it myself. Instead I give you this – but this is how I feel.)

Now, like singing and crazy laughing, Holland has been taken away. I hate Holland now too – it scares the shit out of me – makes me want to throw up like a hotel luau.

Part of what makes autism so terrifying is how little it is understood. From the start, it has been difficult to define. Trying to explain exactly what he meant by the word, “autism,” the good Doctor Bleuler wrote, “naturally, some withdrawal from reality is implicit in the wishful thinking of normal people who ‘build castles in Spain’.” The difference to Bleuler, was that for “normal people,” these constructions/daydreams are, “an act of will,” by those who know what they are doing and are able to “banish” their “fantasy …as soon as reality so demands.” Bleuler explained that such “normal” episodes would not be examples of “autism” unless they were, “coupled with a definite withdrawal from the external world.”

In settling on the name for the disorder we now know as, “autism”, Dr. Kanner was not entirely comfortable. He decided to use the term only after what he called, “much groping.” Kanner considered Blueler’s “castles”, and pointed out that his own patients (those eleven children) had not withdrawn from reality or the “external world”, as Bleuler’s definition would suggest. To Kanner’s mind, his autistic children had never participated in a world or reality shared by others.

I have never before heard a daydream described so, but apparently the expression, “building castles in Spain,” dates to the 13th century French poem, Roman de la Rose. In the poem, Spain is a symbol for refuge, a place of safety, away from the world, where people – in this case lovers – can be together. To stick with the metaphor I cynically attacked above, Spain is neither Italy nor Holland, but a place apart where people can exist as they are, or perhaps wish to be, together. It is a country where daydreams are made. Such a place is more the province of poets than psychologists. Six centuries after the old French poem, Longfellow wrote of his own waking dreams:

How like a ruin overgrown
With flower's that hide the rents of time,
Stands now the Past that I have known,
Castles in Spain, not built of stone
But of white summer clouds, and blown
Into this little mist of rhyme! [from Birds of Passage]

When I first heard the words come out of the psychologist’s mouth, life flashed before my eyes. Not mine exactly, but Finn’s – though it wasn’t really Finn’s either, because he hadn’t lived it. It was a projection of Finn’s life, or what I had thought it might be like – like a home movie of memories not yet made, directed by me. In many ways, not surprisingly, it mirrored my own – borrowed from it. Like two reels running side by side, with me picking out the good bits from my reel and pasting them onto Finn’s. I hadn’t been thinking about it consciously, but there it was. The diagnosis brought into focus, a life I had been creating, dreaming, expecting for my son. It was a life I recognized and could understand.

As a young man, I made it my business to travel to distant corners of the world, maybe as a way to know it and my place in it. One of the places I stayed longest was Spain (the country, not the metaphor). I got a job teaching English at a modeling agency in Madrid. (It’s the truth – God, why didn’t someone tell me there would never be another job like that?) In my free time, I wandered twisting streets, drank bad beer and great wine, and fell in love several times a day.

These experiences all became frames on the reel of my life – colorful, beautiful frames – that I wanted to give to my son. I didn’t want him to live them exactly as I had, but I guess I hoped he would go out and find them, or other places like them, and report back to me, and that I would understand a little bit about what he saw, and how he felt: the beauty, the newness the excitement.

When I finally heard the words, and swallowed them, Finn’s reel became blank to me. It was a film I could no longer see, in a language I didn’t understand.

Now I see it is my job, as his father, to let him direct his own movie. I guess that was always my job, I just didn’t recognize it. It is also my job to try to understand it, to make sense of the images and sounds. And, to give him the tools to hopefully make it coherent to me and others.

Somewhere in the semantic debate between Bleuler and Kanner about what is intended by the word “autism,” is a tiny crack through which I can now almost see hope. Such are the straws a parent will grasp for. Kanner seems to be saying – and I believe – my son does not want to be alone; he did not retreat from this world because he wanted to be isolated in his own. He wants me with him, and to be with me. He is not alone, we are not alone.

Since there is no chance of me becoming a neuroscientist, the best I can do, as his father, is add my own piece to the poem. I like to imagine, someday, under deep Andalusian skies, as rich a blue as an El Greco canvas, my son and me – in his world or mine, or somewhere we can share in between – laughing, building castles together.

 

Patrick Okell

 

Postscript: Yeah, I know, I can’t believe I’m making this longer either, but I feel like I owe you something if you’ve read this far. I need to tell you that I wrote most of this essay almost three years ago. This was the beginning of my story with autism, but by no means the end. By all accounts, Finn has made huge progress. He is talking (yes, talking!), and laughing, and playing with his sister, and some peers. He is learning and thriving, and is still absolutely delightful.

The essay I need to write is the one about how he got to where he is now. The one in which I thank the amazing people who have helped him on his journey: Jen, Carolyn, Beth, Ariane, Tara, Lily, Chris, Allie, Jennifer, Amy, Rosie, Janet, Cheryl, Breanne, Mary, Laurel, Laura, Elisabeth, Lisa, Lydia, Sylvia, Heather, Shawna, Anny, Rosa, Taylor, Falon, Amanda, Alexandra … This list goes on, and each name is a blessing, and I am grateful. Under their playful guidance, my son has thrived, and they have given me back hope. And no one can ask for more than that. I will write that essay (someday), but until then, thank you!

If you or someone you know is struggling with the recent diagnosis of a loved one with autism, please feel free to contact me. I am happy to talk to anyone, and eager to help if I can. Autism Speaks (autismspeaks.org) has some great resources, and I would recommend their “100 day Kit” to anyone with a child recently diagnosed. If you are a parent reading this, I know a little bit about where you are. It may not seem like it now, but there is some hope out there. Don’t give up.