The A(utism) Word

        A while back I wrote a post about my concern that our son was developing a stutter (click here to read that essay). Now, a little over a year later, we have a diagnosis of Autism Spectrum Disorder. 

Um, hi God. I'm sorry I complained. We'll just go ahead and take the stutter if that's alright with you.         

When you receive an ASD diagnosis the first choice you have to make is how to feel about it. This isn't the chicken pox or the flu, an illness one endures in the body and then gets past with their essential self intact. The decision is actually an incredibly complex one that depends on what you know about autism, what you believe about it and what attitude towards it you think will best serve your child. This decision is quickly brought to a fine point, the first time a situation arises where you have to choose whether or not to use the word, autism, in your child's presence.  

To use the A word or not to use the A word. This is a tough decision to make as a parent of an autistic child, and I want to say right up front that I don't think there is one right choice. Every parent has to search their own soul and do what they believe is best for their child and their family. But your attitude towards the word can be in some ways representative of your attitude towards the disorder and towards the future.    

        For a while I thought that my willingness, and even comfort, using the word "autistic" was a gage of my level of acceptance, acceptance of the diagnosis, and more importantly acceptance of my son as something other than what we all hope our children will be, healthy, whole, unlimited in potential. I thought that perhaps if we just said it like it was no big deal, like being left-handed, that it would seem like no big deal to him and to us, and it would lose its power to inflict pain.   

In an effort to "accept" and prepare for an "inevitable" future with autism, I started reading books about autism in later life. These books were meticulous in their avoidance of hopeful language. They never spoke of healing, they never spoke of improvement, they never spoke of potential or independence, they never acknowledged the possibility that autism could be anything but incurable. In horribly no-nonsense language the chapters went on about assisted living and the best types of savings accounts for preparing to financially support your child for the rest of their lives. The autistic child was, and always would be, a hopeless burden. Accept it. Those books were advising me to box in my son’s life in the name of practicality, realism. According to those books acceptance seems to equal letting go of hope for him, for his future and the fullness of his life. To hell with that.  

       

There are a lot of people in the autism community who want to tell you not to get your hopes up. Some have the attitude that you should just be zen about it and "accept" what is. Don't waste time searching for a cure, just put a positive spin on things as they are. There's the movement for "neurological diversity," that suggests that autism doesn't need a cure, that autism isn't worse than "normal," it's just different. There are the bumper stickers some tote on their cars that say "Autism is Ausome!" Perhaps if you think of all autistic individuals as being savants like Rain man (as movies and television like to portray them) autism might seem "Ausome," but the reality is that only 10% of autistic individuals demonstrate any savant talents, and that talent is usually something as useless as being able to recite the December, 1989 TV guide from memory. On the other hand, twenty-five percent of autistic individuals are non-verbal. Only 17 percent of autistic individuals, ages 21-25, ever even attempt to live independently. Autistic children are victims of abuse and even homicide at a rate that far exceeds that of typically developing children. Many, if not most, individuals on the spectrum struggle to have human relationships. They don't like to be touched, they don't like to be hugged, they don't bond with their family members. I don't know about you, but that doesn't sound awesome to me, no matter how you spell it.  

Others, often in reaction to the "I'm ok, you're ok" bumper sticker rockin', delusional pep squad, go too far the other way. They urge parents to face the grim facts. To accept that it's a hard, painful, devastating condition that brings suffering on entire families. They get angry when fad therapies emerge, or some new study makes news and "gets everyone's hopes up." One side says, everything's A-okay! Who needs a cure? The other says, everything is awful, and talk of a cure is cruel.  

I get both impulses, really I do. Autism is terrifying and heartbreaking, and the only thing scarier than the disease itself, is the hope that you can rescue your child from it. Hope is scary and painful. Hope does not deny what is, put a positive spin on it, say it's not that bad, but it also refuses to accept it as unalterable. Hope focuses, not on what is, but on what can be. It puts all its eggs in a basket that very well might get smashed to shit, and it knows it, and it does it anyway because hope is only for the strong and the brave. What I want to tell those people who abhor hope in one fashion or another, is, if you want to be zen about your  own challenges and struggles, or if you want to lay down and die in the face of adversity, go for it. But no one has the right to do that for someone else and especially not for their child. If you're a parent, you don't have the right to give up hope because a child will never have more hope and determination than their parent. So you go cry in your closet when you need to and then you wash your face and you get back out there and you hope, dammit.    

Autism is a really twisted, gnarly maze, but there is a way out, and it's my job to get in there with my kid, take his hand, search unceasingly for that way out, and hum a song while we do it, so that he's not afraid. I don't have time for anyone who tells me to just leave him in the maze, or to throw him a pillow so he can get comfortable because there's no way out. I'm not leaving him and I'm not throwing him any pillows. We're getting the hell out of there.

  

My aunt was born with her umbilical cord strangling her. She was brain damaged, and the doctor's told my grandmother it would be best to institutionalize her. My Grandmother said, very politely and in not so many words, screw that. She took her baby home and she raised her just as she raised the rest of her ten (!) children. She never lowered the bar for her, and she never allowed anyone to stick any limiting labels on her. She got her some therapies, but put her in regular school, regular sports and expected her to abide by the regular rules. My aunt today has a full time job, owns a home that she paid for, is a fully functioning autonomous woman, and to this day doesn't think of herself as disabled. My aunt grew up just assuming that she could do what everyone around her could do and that she would go on to do the same things as them in the future. Assumptions are powerful stuff.  

It doesn't seem like a little old word should matter that much. A rose by any other name, and all that, but words do matter. Words and labels have incredible power, and all I see this particular word as offering my child, at least at this point in his life, is excuses, crutches, reasons to fail, lowered expectations, brochures for a lifetime of assisted living. I want him to assume that he can do the same things other kids can. I want him to grow up assuming he will have a family, he will have a career, he will go places and do things and affect people and make a difference. And while he's doing that, I'm going to assume that there are answers out there and that I'm going to find them and he will be a success story. We have nothing to lose but hope, and hope isn't hope unless it's being gambled.