13 January 2008


When I sat down to write today, my intention was to tell you about a wonderful parent meeting I'd just been to. We started out as strangers, but then we began sharing stories. Surprisingly, these turned out to be one howler after another. Within half an hour it was a party, and we were united in tearful shrieks of laughter. I can't overstate how good it felt. Completely uninhibited about it, we turned heads. I have to admit at one point a guilty thought struck me 'Hey, we are laughing at our children....that should be so wrong...' Somehow it wasn't. I was so glad I took the chance to meet with other veterans of the Planet Autism Space Program. It's a wonderful relief to share stories with people who can really understand. It felt so good.

As a way to preserve your sanity, I recommend laughing at your children at every opportunity. With or without autism, I never have to look very far to find some genuinely hilarious moments in among the debris.

Of course there are moments which aren't funny. It's important to acknowledge that. Well before you can get to the 'cackling at your children in public' stage, you have to pass through a wide and scary asteroid belt where things are definitely not what you expected, and impossible challenges become the norm.

Ben, my eldest son, has just turned eleven. He was born without any of the lumps or abrasions they warn you about. Instead he was a perfect little cherub, and strangely alert. He actually seemed to glow. Ben was a chick magnet, causing women of all ages to flock around, to coo and dote on him. It was astonishing. Some photos of him at the time were so cute they were accepted by a national retailer for use in print ads.

One day when he was about six months old I played a game with him. Simply put, I showed him an object and then hid it from him under a towel. At that age, he was supposed to think the object was gone when it was out of sight, but Ben knew it was there. He kept reaching for it. That suggested he'd grasped the concept of 'object permanence' ahead of schedule. Then at nine months he said his first word, "Mama." I thought, 'My baby is a genius!' Physically his development was right on track: he walked at 12 months. He started running about ten minutes later. I was feeling pretty pleased with the whole parenthood business. "Nothing to it,' I concluded.

At about twelve months, when Ben woke in the morning he would often play quietly in his crib for a while. I thought that was very considerate behavior for an infant. Often I would hear his sweet little voice imitating the sounds of conversation. From another room it sounded just like someone speaking, only you couldn't quite make out the words. Oddly, it sounded that way up close, too. He had mastered cadence, rhythm, and varying tone and pitch. He would even slip in a charming laugh now and then. Now all he needed to do was to learn some words to fit into the template. We waited (and waited) for this to happen.

Ben reached 30 months before we really began to worry. Years before I had written a term paper on how children learn to talk. I knew that he should start with babbling, and by the age of two have a couple hundred words. He should be starting to use them to form simple two and three word sentences. That didn't happen, and it kept right on not happening. He was stuck with his elaborate, imitative prattle, which sounded like it should be understandable, but wasn't. Ben had all the elements, but he was running the wrong software. His behaviour degenerated as his communication became limited to a few words he'd made up and piercing screams of frustration.

His dad, Taipan, and I were at a puzzled, uneasy loss. The doctors didn't want to pronounce the diagnosis of autism. That was partly because Ben made good eye contact, was sociable and affectionate, and also because he was so young. He might catch up, we were told. There was a chance that he had one of many vague developmental delays that might correct itself in time. Or one of the milder syndromes on what I began to understand was a spectrum. That turned out to be a cruelly false hope. The terrible twos were just what everyone said to expect, but turned out to be a forecast of what was to unfold. Things got steadily worse.

I became very stressed out. When you feel challenged beyond your abilities every day, the result is a feeling of inadequacy, hopelessness, and resentment. I became overwhelmed with anxiety and depression and had to have that seen to.

Meanwhile we arranged for Ben to have private speech therapy. It was expensive enough to mean making some budgeting sacrifices, but it was state of the art. I've still got a slick collection of videotaped sessions, many of which show Ben's most fearsome, back arching tantrums; screaming, throwing toys, scattering pages, kicking at walls, furniture, and people. The therapist was invariably calm and patient. I was invariably in the next room wishing I was anywhere else. I think the therapy did help, but it didn't work miracles.

Ben, we learned, was echolalic. That was why he was so good at imitating the sounds of speech. He gradually picked up a small number of words which indicated he could hear, but nowhere near enough of them. He still screamed many times each day, from frustration, and anytime he didn't get his own way. He was a nightmare for the young women at several daycare centers, where I enrolled him two days per week so he could socialize and I could have a break. bewildered, they would generally give in to him so he'd stop screaming. Taipan and I differed on how we handled the tantrums. I thought we should be firm and consistent. Taipan would let Ben have pretty much whatever he was screaming for. Sometimes he'd try to resist, only to concede a short while later. That had far reaching consequences on Ben's behaviour. He's a smart boy. He learned that if he displayed his loudest and most violent sounding protests, most adults would do whatever it took to make it stop.

Believe it or not, for me the diagnosis of autism came as a relief. By then I had been listening for almost two years to concerned preschool teachers and special needs advisors. Educators aren't allowed to diagnose, but if they have concerns they find ways to suggest what they think the problem might be. They put information in front of me. They gently pierced the threadbare denial caused by the pediatrician's reluctance to make the diagnosis. I think the doctor meant well. He didn't want to be the one to break our hearts. But a diagnosis became what stood between us and the early intervention therapy that Ben needed. There were forms to be filled out. And that was how it happened finally. There was no devastating pronouncement in an antiseptic consulting room. Instead the anguish made itself known over time.

I came to a purposeful acceptance long before Taipan did. I've been told that is not at all an uncommon reaction for a father to have. The absence of a diagnosis was the hope he clung to. He applied an 'all or nothing' thought process to the problem. If we didn't have a diagnosis, this couldn't be serious. It had to get better. He never intended to be hurtful, but occasionally he would be angry in my direction and at the teachers with all their bad news.

"You're all only seeing the negative things! Do you seriously believe that you and his teachers know more than a DOCTOR?" His resistance only added to the stress of dealing with the problems. For a while, it may have even prolonged the confusion.Without realizing it, he'd developed a way of masking many of Ben's deficits by carrying him in to the office of whatever doctor or therapist we were seeing. He'd hold Ben, or quickly pick him up again if Ben was getting into drawers and cupboards or clicking light switches or other compulsive behaviours.

Taipan would talk to Ben constantly, even answering questions for him, and Ben would echo the words. Taipan is engaging and very funny in conversation. People love his stories. He now had an adorable sidekick. It was a perfect ventriloquist act. When I realized what he was doing, and called him on it, he blankly insisted it wasn't so. It took the intervention of the speech therapist one day, who bluntly told him to stop prompting our son.

Eventually even Taipan's stout resistance was worn down, and he caught up with everyone else. It was not a satisfying process to witness. A sad consensus was reached. I met with the doctor and asked him to please just write it down.

Ben did learn to talk, in a mad rush, in about ten weeks. Better late than never, of course, but by then the social and behaviour issues had blossomed. He was still winsome and cute, but he was increasingly difficult to live with. He developed fears and obsessions. He displayed Oppositional Defiance Disorder (ODD) and his behaviour was at times disturbing and destructive.

When he was nearly five, the speech therapist arranged for us to meet with a psychologist. This man is a noted authority on autism; he's generally the person news media interview whenever the issue of autism makes the headlines in Australia. He suggested we medicate Ben's symptoms of ADHD. Ben's brain is overwhelmed by sensory input, we were told. Imagine his head filled with static that he can't make sense of. He said that the drug would calm all of that down, and that he'd be able to listen and concentrate on speech, as distinct from merely hearing it. The prediction was that Ben would be talking within three months. While these drugs aren't for everyone, they have worked in our case. That's exactly what happened.

That psychologist was the first professional to address what effect all of this was having on me. I hadn't even realized that no one else had until he brought it up. Suddenly tears were stinging my eyes from this unexpected kindness. "You must find this really difficult. I'll bet Ben is a daily headache generator." I nodded.

Another helpful insight was, "You are Ben's favourite toy. He's a smart little guy and he's figured you out. He knows if he presses the buttons in a particular way, sooner or later you'll explode." That certainly summed up the dynamics of most days.

The psychologist did get one fairly big thing wrong, though. He revived hope that perhaps it wasn't classic autism. More like 'autism lite.' He said that perhaps Ben fell somewhere on the spectrum, but if he did it was the less bothersome end of the scale. I wept. I can't blame him, though. It was an observation made during one 45 minute consultation. Ben was in a familiar place, his speech therapist's room with lots of toys. And Taipan was doing the charm and ventriloquism thing for all he was worth. It wasn't just me who noticed; the speech therapist raised eyebrows and cleared her throat at him several times.

Since his big language breakthrough, Ben seldom stops talking. He demands attention all of the time, which can be exhausting. He has not learned when to modulate his voice. Or to wait his turn to speak. Or care much about what topic others might be interested in. He interjects abruptly with whatever he's obsessing on at the moment, almost always in a loud voice; it's as if his CAPS LOCK IS STUCK ON.

Ben will say aloud whatever is going through his thoughts, which can be socially awkward. Even when it isn't awkward, it can still be baffling to people. He doesn't understand that others aren't thinking about what he's thinking. If something is interesting to him, he can't imagine others being unaware or indifferent to it.

When Ben was two, before his disability became obvious, we had a second baby. I was thrilled when another boy was born. Two boys, I thought, could be friends. You'll be pleased to know that they have a completely normal brotherly relationship: they fight with each other like little vikings. All day long.

Linus was six weeks premature, but soon caught up in size and weight. He was affectionate to the point of being clingy at times, but unlike Ben, I really felt Linus was giving me plenty of love in return. He still does. He is a very comforting child to be around. Ben will cuddle, but only when he needs it.

Linus mastered walking a little later than Ben did, but then his brother was jealous of him and pushed him over a lot. Linus was eager to be up and around, and exploring. He seemed to be developing normally. Except he didn't speak. His second birthday came and went. I began to have a definite 'Here we go again...' feeling. It turned out I was right.

Much less time was wasted in denial during the second round. I took the initiative and pressed for a diagnosis. I'd gotten over that label shock that I'd worried over with Ben, and knew that the intervention that Linus required depended on the word 'autism' being inscribed on the right forms. Well, we know how to do all this now, don't we? I took the forms with me to the kindly old doctor, and we filled them out.

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