Saturday, May 28, 2011
To accept, to understand, to celebrate
I wish someone had told me earlier that my son had Asperger’s Syndrome.
I wish someone had told me he was locked into a world he didn’t choose; a world I didn’t cause.
I wish someone had told me I didn’t need to rescue him, or force him out of his narrow prison.
I wish someone had told me that all I had to do was join him in his world, sit there with him while he found the courage and acceptance to find his own way into the world that judged him odd; different.
I wish someone had told me how easy it would be to celebrate him when I understood.
I am told
It is July 2005 and I am told. My brain swims and floats in a thick, fluid ocean. My body stays still. I am numb for days. I sit in front of the television. Or does it sit in front of me? I am blank. It doesn’t make sense. Nothing makes sense. Everything makes sense. I have answers. I have questions. I am between heaven and hell. And I am alone.
My son has Asperger’s Syndrome Disorder. We have been living and struggling with this for fourteen years, without knowing and knowing it only too well. High school is a disaster. We are a disaster. And we are in it together.
The specialist who delivered the diagnosis does not hand me a manual or one of those pamphlets that clutter the doctor’s surgeries because there isn’t one for Asperger’s.
The roller coaster begins
The roller coaster begins. It is the first day in December 1990. He is born. Not wide-eyed with knowing concern like his older brother but all bunched up and squinting, yowling and yawning. His mouth always seeking. His head turning to find me. Curving his body into mine and murmuring soft kitten noises. His fine blonde hair sticks straight up compounding his look of surprise at entering this new world. He is here at last. He is mine. He is Bronson.
I am in for the ride of my life. The universe has repaid my patient waiting with another son. Another chance. A learning. I will teach as I have never taught before. I will learn as I have never learned before. I am thirty-six years old. The same age my mother was when she had me. I had made this the cut off point for having another child. I turned thirty-six in the hospital one week before he was born. There is a sense of timing in this that has been lacking in my life so far. He was meant to be; to be here, to be mine.
My beloved uncle who had shared my birthday died a few days after our birthday, a few days before Bronson’s birth. A life ending and a life beginning.
I don’t remember the birth because I had an emergency Caesarean section. Later on I will enjoy telling Bronson that I slept through his birth because I must have known there would be no sleep for me after his arrival. And although the early days are not gentle they are softly misted with the joy of a child arrived to fill my heart, and my days.
When Bronson is only a few hours old he grasps the finger of his big brother and doesn’t let go. Luke is fourteen years old and leans his rangy body over the clear Perspex crib that stands next to the huge shiny double-glass window of the Sydney Adventist Hospital. I feel at home here. It is my Alma Mater; the place I did my training to become a registered nurse just over a decade ago.
The blistering sun bathes them both in a golden summer glow. They are framed there in that huge square window that overlooks the gum trees, and I watch them reverently repeating to myself, ‘my two sons, my two sons’ thinking then that I will remember this day forever.
Bronson keeps his tight grip on his brother’s finger and Luke stands stock still in wonder, holding the hand of the newest human being he has ever seen with the kind of commitment that says “I am here for you”.
Adam, my husband and the father of the newborn, (who missed the whole experience “due to his wife’s propensity for the dramatic” and need for emergency surgery), sits slumped from exhaustion in a chair, telling all who will listen that he is ‘never going through that again.’
My mother, who is looking as if she desperately wishes I hadn’t gone through it at all, sits glued by my side. She has been afraid for me and won’t leave me even to meet her newest grandson. I learned later that they thought I might not make it. I had lost so much blood.
I was blissfully unaware of this. My sweet Auntie, the sister of my late father, is here too, tightly clutching a bunch of delicately pale, pink miniature roses; my favourites.
I lay in the midst of all this familial fuss and wonder, the mother of the newborn. My blonde hair is short and raffish. I have the usual look of post-operative pallor and haze. I have a Madonna’s smile under dark bleary eyes.
I am full to the brim with optimism and hope and, as the universe seems so often to intend, I am oblivious to the journey ahead. My husband’s mother is here too, and as usual is blessedly normal about everything. She announces the baby has Uncle Slim’s chin and somebody else’s eyebrows.
Luke is astonished and mutters under his breath, ‘Frigging baby doesn’t have a chin!’
Under the radar
When I came out of the dark tunnel of grieving over the diagnosis I reached a place of personal acceptance about Bronson and about Asperger’s. However, the biggest shock was still right there waiting for me. When I offered my hard won new information and enlightenment to others, those who had so readily called attention to his behaviour before, I was greeted with what I can only call disinterested disbelief.
There I was, emerging from the dark jungle after struggling for years with the wildlife in the shadows of my son’s world and all I got was this! It was enough to make me run back into the jungle and offer myself up to the first man-eating beast I could find. I had expected to be greeted with a light bulb moment or a brief earnest enquiry. At the very least a little more respect than if I had just bought a second hand pair of knickers off eBay. Not happening.
I must have told the wrong people. I must have travelled to another dimension where some of the people I knew and my son’s teachers had all been replicated without their emotions. I waited for a Hollywood moment and for the universe to right itself.
Why didn’t we hear much about Asperger’s Syndrome Disorder before now? Is it a new label for poor parenting? Is it an excuse or an explanation? Whether Asperger’s is on the increase due to environmental factors or other causes the experts don’t know, but it does seem that society must face the fact that there are many children who are suffering from this disorder. And this is exactly what these children are doing. They are suffering. They live next door, up the street or maybe even at your house.
Hans Asperger, the Viennese paediatrician credited with first describing the group of behaviours evident in Asperger’s sufferers was published over 50 years ago. His groundbreaking work did not gain wider recognition until the 1990’s. In his initial research he described children with awkward social interaction, one sided conversation, lack of empathy, intense absorption in chosen interests and clumsy movements.
It has helped me to look at Asperger’s as being like an ice cream shop. If you were looking at diabetes, the group of symptoms would look the same for each person. But with Asperger’s there is a selection, or profile, as if the person has been given a range of symptoms chosen from a large spectrum—that is, all the flavours of the ice cream shop.
So while the diabetic choice will always look the same, for instance, classic Neapolitan, the Asperger’s profile will be a random selection from many of the “ice cream” choices. The diabetic profile will be instantly recognizable but the Asperger’s “selection” will be much harder to pick due to the variety between sufferers. It would look more like rum and raisin, plus macadamia and mango with a little coconut ice, topped off with fudge. Another child might have chocolate mud and almond crunch. Both children will have the same diagnosis but a different selection of “ice cream”.
Each sufferer manifests a different “collection” of behaviours from the Autism spectrum. This makes diagnosis harder. It isn’t unusual to find medical practitioners who are not familiar with the profile. While the average GP will have little trouble diagnosing diabetes, they may struggle with the Asperger’s spectrum. The good news is that even if there is no formal diagnosis, many of the strategies work well with children who have “Asperger’s tendencies”.
Even though Asperger’s is not life threatening, obtaining a specialist diagnosis is invaluable. Accepting the diagnosis is a boon not only to the sufferer but to the whole family and the community at large. Some children will manifest a smaller number of behaviours than others and diagnosis is often made on the overall “weight” of symptoms that are evident.
With early intervention it is possible for some of the behaviours to lessen and actually disappear so that in adulthood it may be difficult to even perceive the original basis for the diagnosis. This spells hope.
These children have always existed. We have thought them odd and although they do not present as the classic stereotype of having a “mental illness”, we have sensed that they are different. I was somewhat loathe to use the word suffering at first but my own experience with my son and mixing with other parents has made me feel that this is indeed exactly what these children are doing—suffering.
The old perception that these kids are parenting nightmares must be displaced by the reality that we have a group of unique human beings who are in a world that is not of their own choosing or their parent’s. We cannot go on ignoring and writing these kids off.
A diagnosis of Asperger’s does not excuse, but it does explain, and we need all the explanation we can get. Sometimes when I am dealing with Bronson I liken his responses to that of someone who has spent a lifetime on another planet with other realities. He seems to be attempting to apply the rules of existence to another time and place.
In some ways he seemed an advanced form of life because he had very specific and detailed rules from this other place. Indeed he perceived no strangeness in himself but was pedantically and condescendingly aggravated with me for not knowing how the world really worked. In his eyes I was failing miserably. My attempts to make him conform pushed him to screaming point.
His fierce intelligent eyes told the story of it all. How had he managed to be saddled with such an inferior human being? One who didn’t have the smallest grasp on “how things were”? He had found himself in a strange and parallel universe and was struggling to make sense of this world. He spent a great deal of time trying to inflict his realities and assessments onto others, because in his mind he came from a position of being the one who knew how things worked and had the frustrating task of trying to make others understand.
Knowing the diagnosis and explaining things to him at an age when he has some pliability is crucial to his development in the world. Just to hear him say, ‘I don’t get that do I?’ means that he has made huge strides; he is opening to the possibility of “other” rather than “one”. The younger the child is when we work out their unique perspective and difficulties the more chance we have of helping them to understand and adapt. Adapting is the hardest thing they will ever have to do.
Most people look at the family with an Asperger’s child and are appalled at the adapting the parent is doing to keep the family on an even keel. This need for adaptation kills me. Drawing the line between requiring Bronson to compromise and me doing the compromising often leaves me with the feeling that organizing world peace would be a piece of cake.
Where are these kids? They are up the street and nearby. Statistics show that perhaps 1 in 100 children suffer from this. That means in your average high school there are a dozen kids, or more.
You see them acting out in supermarkets, throwing tantrums at playgroups when they are facing parting with some weird object of their affection. They line things up in rows, they place importance on trivia. They talk incessantly about Pokémon cards, memorizing great chunks of information and can parrot the details ad nauseum, but cannot hold any other conversation. They cling to visual contact with a parent, what they can’t see doesn’t exist. If they can’t see you, you are gone forever. After a hard day of playing they can’t sleep—not because they are achy or ill, but because they are bored.
They are all different in their uniqueness, but they have one thing in common, they are uncomfortable much of the time outside their comfort zone. They are bullied and shunned. They suffer abuse and rejection from their classmates, casual observers in public places and even abuse from their parents.
Finding out about Asperger’s can only help—not just the parent and the child but the rest of us who walk away saying ‘Thank God I don’t have that child’; ‘I would do things very differently to that mother.’ Or the classic, ‘No child of mine would do that to me.’
This is a community disorder in a far greater sense than diabetes or fractured limbs. We cannot stand alone. We can only find our way out of the maze together. And we can’t negotiate the maze until we understand at least a little about the walls that surround them and constrain their world.
When we can change the community perception of Asperger’s, we will find freedom for our children in a world where understanding and compassion replaces prejudice and intolerance. Then we will not only learn to tolerate, but respect and enjoy them for their unique contribution to the world, for they do have much to offer us.
The attitude of Luke Jackson, a thirteen year old AS sufferer, in his book “Freaks, Geeks and Asperger’s Syndrome”, proposes the most positive attitude that we need to foster and embrace when her refers to his Asperger’s as a “gift”. (L. Jackson 2002)
I found that people are more comfortable with the idea that it is a parenting problem. They didn’t realise that I had thoroughly and completely blamed myself for every word and deed for the last fourteen years. Then maybe they did. After all I listened with pathetic longing to every word of blame they offered me in my search for answers. ‘This wouldn’t happen if you were more consistent/firm/demanding’, ‘He doesn’t do that when he is with me’, ‘We never heard of that when we were kids and we turned out alright.’
But don’t we all remember the ones for whom it didn’t turn out alright, the Kevin’s who didn’t fit in. Who stressed, and acted out. Who were afraid. The ones we just lost touch with because they weren’t a part of our normal little group. These individuals didn’t start to exist with the advent and use of a label. They were always there; bullied and silent, awkward and shunned. Under the radar.
We need understanding of Asperger’s. The truth will set us free.
Recently I walked past a quilting class in one of the craft shops that I frequent. In the midst of the glorious clutter of fabric bolts and fat quarters with sprigs of lavender flowers, moss green ferns, delicate hand painted roses and the rainbow of subtle hues and vibrant homespun sat five women with threads, patches and patterns.
One woman was standing nervously and I heard her say to the others, ‘I have class III cancer, I have six months to live and I want to make a quilt about my life to leave for my children.’
This announcement was met with lively chatter from the others in the class showing their level of comfort with her news. The gentle little woman fragrant with the scent of lilies sat down, sighed and got on with the living she had left to do.
No-one had denied her the truth, she had been told calmly and factually by her doctor and her new friends accepted without question the limits on her mortality.
Ultimately, it was all about attitude and acceptance.