Autism- Our story.
Autism is a word that instils fear into the heart of any parent. Like Downs Syndrome or Cerebral Palsy, it is a condition that is generally well known but unless it touches you personally, not all that well understood. Although I had known a few people who had autistic children, I didn't really understand what it was or how children with autism were affected. To be honest, it wasn't something I thought about too deeply because I never really thought it could happen to me.
When my second child was born in January 2006, he appeared to all extents to be a big, beautiful, healthy boy. Delivered at 39 weeks weighing 3.85kg, Alexander seemed perfect. He brought forth the few tears that I have ever seen from his father's eyes. While exhausted from a difficult and traumatic birth, I felt relieved and confident that we had once again managed to bring healthy child into the world.
However, it was honestly within hours that I began to develop a distressing and unshakeable sense that all was not right with our boy. Alexander screamed from the second he was born and for the next several days at the hospital. Nothing would comfort him, to the point where I too was inconsolable and desperate for somebody to work out what was wrong with my son. The nurses declared that he "had wind, apparently the only answer that is given to Mums whose babies scream for no apparent reason. On day 6 when the midwife visited us at home, she found both myself and Alex hysterical- me forcibly trying to attach him to my breast, he violently resisting. When he finally gave in and fed from the breast he screamed inconsolably for hours afterwards. This would become a pattern that distressed us both immeasurably. By 6 weeks of age we were both admitted to hospital as I had developed mastitis. We spent 3 days with me spending most of the time sitting, sobbing in the toilet with the shower running to drown out his screams.
Despite the obvious feeding difficulties my son was having, the most alarming thing to me was that he genuinely did not respond to me at all, in any way. I could rock him, try to comfort him, but to all extents my efforts were fruitless. It was honestly as though I were not there at all. From only a few months of age I began saying to people, "I think he is autistic. I don't even think I knew what that meant at the time, but it was the only word that came to mind to explain my son's behaviour.
At 10 weeks of age Alex was admitted to hospital, (as he was by this stage going almost 24 hours between feeds,) and diagnosed with severe dairy and soy allergy. When he was offered Neocate, an oil based prescription formula, he took to it like a duck to water. Finally, it seemed that we were getting some answers. Still, while life began to slowly improve, I could not shake the feeling that all was still not quite right with our baby.
Up until a year of age Alexander (after spending a week at Tresillian Residential Unit to teach him how to sleep,) developed much like any other child. He sat up, crawled and walked, reached all of his milestones. He was a beautiful, happy boy who would smile for strangers in the supermarket. He waved, clapped hands, said, "Mum mum, Dad dad," and all of those things that you expect from a normal, social child. However, at approximately 14 months of age he began to quite suddenly and without warning, scream hysterically. I remember the first time we arrived at kindy gym class and Alexander literally began screaming and shaking, clinging on to me as though he was terrified. His teacher and I assumed that he must have been ill, despite the fact that he had been perfectly fine before arriving at class. We took him home and although I was now completely on edge, he appeared entirely back to normal. Without any knowledge that would suggest that our lives were about to change irreversibly, a knot of fear had quietly begun to form in the pit of my stomach...
From this day, the screaming episodes became more frequent. It could be the supermarket, play group, the local park. Without any kind of warning our son could be reduced to absolute, sheer hysteria and no amount of consoling would calm him down. The only way to stop the screaming was to leave- back to the car, back to our home. The closer we got to home, the calmer he became. We would sit in our driveway, my heart beating manically, fighting with every breath not to cry. I would watch him in the review mirror- calm, now. A little smile on his face and a glaze in his eye. It was in these moments that I began to despise him with a ferocity that frightened me. Why was he doing this to me?
As he approached 16 months of age, I gave birth prematurely to our 3rd child, a baby girl named Hannah. At this point, life with Alexander had become unbearable. I dreaded being alone with him as his "tantrums" were no longer confined to outings, he had become volatile at home also- any single thing could provoke an absolute melt down. Every request for outside help proved futile- it was generally suggested that Alexander's behaviour was a reaction to the birth of his baby sister. While all of the doctors, nurses and child health professionals seemed unconcerned, I knew that there was something else going on. Quite aside from the fact that his behaviour was in my mind nothing even close to normal, he quite seriously didn't appear aware that his sister was even here. The only thing to suggest that he was aware of any of us would be his complete hysteria if either I or my husband attempted to leave the room. That was the most bizarre thing as while we were in the room, he seemed to be entirely unaware of our presence.
Between the ages of 18 months and two, we tried everything and anyone, all in the hope of finding some answers. Most professionals and even friends dismissed our concerns with statements such a, "boys always develop later," or, "He seems like a normal toddler." Easy to say when you only see him for 5- 20mins at a time. At one point I was even told, "I think you want Alexander to have autism."
At 21 months of age out of sheer desperation, we even stayed a week at a residential baby and toddler unit. It was here that somebody finally acknowledged my fears. The unit paediatrician, within moments of meeting Alexander, stated that there was definitely something, "not quite right with him." He wrote a letter to our own paediatrician noting poor eye contact, variable levels of interaction and constant babble. He also wrote that he predicted that he would fall somewhere on the autistic spectrum.
Ironically, after pleading for almost a year for somebody to take my fears seriously, after these words from the paediatrician I cried for most of the week.
At 2 years and 4 months of age our own paediatrician finally agreed that Alexander had a severe speech delay and "probable Autistic Spectrum Disorder." However, he still felt that he was "too social and "too interactive" for an autistic child. That is one of the most common pitfalls I found in the quest for a diagnosis- everybody assumes that all autistic children are the same- they are "pigeon holed" with the belief that all children with ASD have poor eye contact, no speech, no ability to interact socially. The reality is that every autistic child is different and no one child is affected by autism in exactly the same way. That is why Autism is now only referred to as a "Spectrum Disorder, and children can fall on that spectrum anywhere from, "high functioning," to very severe, classical autism. (Classical autism is usually what most people envisage when they hear the word autism- this form of the disorder can be categorized by behaviours such as head banging; hand flapping, tip toe walking and little to no ability to speak of interact with others.)
Although the diagnosis brought an inevitable sadness, at the time it was primarily a relief. It was a relief to have some kind of an understanding into why Alexander was the way he was. He wasn't just a horrible child; I wasn't just a terrible mother. However, I wish that somebody had told me at the time that the diagnosis was just be beginning- that the grief, the pain and the loss of having the child that I thought that I was going to have would never go away. That while we would have many days, most days in which I would rejoice in the things that he did and love him for who he is- that would be days that I would have to force myself to love him despite it. As mothers those are not things that we even allow ourselves to think most of the time- let alone give them a voice.