Struggling to accept the diagnosis
First published in The Telegraph on 15 Oct 2012
At work recently I was stopped in the corridor by a fellow teacher, who asked a rather probing question. She was sitting with a small group of students, presumably from her RE class, and they were discussing abortion. "Sir, if a parent knows their unborn child is disabled, is it morally right for them to consider a termination?" she asked.
I was only going for a wee. Suddenly I'm put on the spot like this! My first reaction was to think: "She doesn't know."
I have no idea how many people at work know my son is autistic. I can count the number of people I have told on one hand, but, of course, that means nothing. Word of mouth, my absences for medical appointments and of course the day I stood and cried in a packed staff room (my low point) could all contribute to people knowing.
Oh, and the glazed, overwhelmed expression I wore on my face for about a year. That was a real sign that here was a man who had just been dealt a blow he did not see coming. Not that I mind. I'd rather people knew, even if it's not something I go around broadcasting. What I've never done is disclose this information to students, so I hesitated slightly before answering.
"Well, my son is autistic...," I began, leaving a pause to let the revelation sink in. Surprisingly, none of the students gave the slightest indication that they had heard what I said. Do all my students pay such little attention to what I say? The teacher's look told me that she hadn’t known and, frankly, she looked a little taken aback. After a moment’s thought, she replied, "I don't really count that as a disability."
If I could rewind the scene and live it over again, here's what I would have said: "Is a child who cannot speak until the age of four not disabled? Is being locked in your own world, unable to communicate, interact in a meaningful way, or form relationships not a disability? If the slightest thing triggers a meltdown, if you self-harm, if you stim, if you don’t sleep, if you won’t eat, is that not a disability? Does having no self awareness and no sense of danger not count? Is being in nappies until the age of five not a disability?”
But of course I didn't say any of those things. There were students there. That, and the fact that I’m a complete wuss when it comes to confrontations. Working in a secondary school, you expect to encounter a certain amount of ignorance, ill-informed opinion and prejudice. After all, if we're not here to open up people's minds and help them learn to accept and embrace difference, then what are we here for? But coming from a member of staff, such lack of acceptance of autism as a disability is troubling.
The discomfort of others
Mind you, this is not the first time I have encountered a reluctance to accept autism as a form of disability, or to accept autism at all. While I certainly don’t ram the subject down people’s throats, there are times when I will either discuss it with people who know our situation, or tell them about my son. They do not always want to hear about it. No one has ever cried: “Autism bore! Run to the hills!” but I bet they’ve thought it. All too often I am met by a deeply uncomfortable reaction, a reluctance to further discuss it or, worst of all, the kind of dismissal I heard from, of all people, the school’s bloody R.E. teacher.
Other men are by far the worst offenders. Colleagues and friends I otherwise get along with well will visibly shrink away from such conversations, with a look that cries: “Taxi out of this conversation!”
I particularly regret the erosion of one friendship, with a friend who I have sadly seen less and less of over the last couple of years. He and I are so obviously in different places. My son’s autism is not something he wishes to be part of our friendship.
But when your child is autistic, it is difficult for it not to define every aspect of your life. It consumes your thoughts, energy and time. When something defines who you are to a large extent, it’s difficult not to want to talk about it. I won’t let it become the elephant in the corner.
Recently a woman commented on my blog, telling me of her husband's reluctance to accept their son's autism. She wrote:
“My husband treats and acts toward my son like he is just another little trouble maker and needs to be corrected, his way. I think my husband doesn’t have the courage to accept our son as autistic and as long as he doesn’t break through his own mind and feelings to accept this, I don’t think he’ll ever understand his son and his wife.”
I hate to admit it, but I recognise the husband in her story. I think I’ve been that man, at least for a short while. The biggest battle with acceptance of autism is your own acceptance, and it does not always come immediately.
In his earliest days, weeks and possibly months, my son was a typical child, and my relationship with him that of a proud, if tired, father. But this did not last.
I can remember the day it ended with a frightening amount of clarity. An uneasy feeling had been creeping over me for the past couple of weeks, and now, as I spent a moment alone with my baby son, I let an awful thought consume me. I had to ask myself: did I love this child? If I did, then why didn’t it feel that way? I had felt the love a father has for a child before. My eldest son provoked in me a feeling of love so strong that you know you will never experience anything like it anywhere else. I thought the same blessed feeling would automatically be bestowed upon me with the birth of my second son, and for a while it was. But as I sat alone with my second son in the bedroom, it wasn’t there. And it wouldn’t come.
I came to dread coming home from work sometimes, or those moments when it was my turn to wrestle him into bed and begin the long struggle to settle him. I said things that will forever haunt me, like “What is wrong with that child?” and “Is he always going to be this bloody annoying?”
These questions were always aimed at my wife, like it was somehow her fault he was like this, and her fault that she did not know the answers.
There are no videos of my son from around this time. Unlike his brother, who I was forever following round with a video camera, he was not filmed taking his first steps or going for the first time to the beach. I could not film my son; I didn’t want to. It’s as if the magic of fatherhood had suddenly vanished.
He did not crave my company, cling to and cuddle me endlessly. He showed no need to bond with me, his father, and we did not. He exhausted me, he frustrated me and he scared me. Perhaps this is how the woman’s husband feels, too.
Around this time, my wife, picking up on my frustration, put into words what I was feeling. “It’s as if you don’t love him”, she said.
I carried the burden of these words around with me for a long time, afraid that they were the truth. It took a complete stranger to tell me that it was autism that I hated, not my son. Whether my son and his condition can be divided is a matter for debate, but the comment helped me reconcile my feelings towards him. It didn’t make me feel much better about myself, though.
Acceptance came with diagnosis
For me, acceptance came with diagnosis. Suddenly, there were reasons. Reasons why my son behaved and acted the way he did, reasons why I struggled so much with him, reasons why my marriage was in such a state. The day my son was diagnosed as “high functioning autistic” was the day I was able to accept who he was, to stop fighting who he was, and to start learning, helping and building a future for him.
I did not ask for the role of autism advocate. Autism was something that happened to other people. Not our family. Not my son. But since first finding myself in this situation, I have known that it is my job to speak up for my son and those like him. There’s a lot of ignorance surrounding autism, even in our schools. I too was ignorant of what it meant to be autistic, and what it meant for the lives of the families affected by autism.
I want my son to grow up in a world that understands him and accepts him. I have a difficult struggle on my hands, but with my son at my side, I have the best motivation and inspiration I could ever wish for.
B’s Dad writes a weekly blog called Life with an Autistic Son.