“Sorry, but your son has autism.”
Damn you, Doctor, for saying it out loud. DAMN YOU! Who the heck are you to use autism and my son’s name in the same sentence? You are NOT God. How the heck can YOU give a label to ANYONE?
That’s what I wanted to shout when the paediatrician told me the outcome of my son’s assessment. As I listened to her voice I felt like someone was squeezing my heart really tight. For a moment, I couldn’t tell who was talking. Was it me or her? I tried to focus, but I was too heartbroken. I couldn’t cry. I was too disappointed. Or shocked. Or disappointed. Whichever.
A minute later, the paediatrician confirmed that she was going to write up the necessary paperwork to register the diagnosis.
OK, whatever, but my son, Curly, doesn’t have autism, I thought.
What led us to this diagnosis? Why was this happening to me? To my husband, the Scientist? To my son? I’m now ready to start talking about my son’s diagnosis and my life as a mother to a boy with autism. It’s a big part of who I am and I won’t hide it. This is my attempt to summarize the last 12 months. Here we go…
Concerns Leading to Assessment
In January 2011, Curly’s daycare providers recommended that we have him assessed because they thought that he was not using language appropriately at three years old. He was speaking only two- to three-word sentences and at times his speech and language were really difficult to understand. The Scientist and I had been concerned about this ourselves since around the time that Curly was six months old. He was not saying much, although physically he was reaching all of his milestones within the “normal” timeframe. He sat at four months, crawled at six months, and walked five days before his first birthday. He only started saying proper words at about 12 months. His language progress was slow, really slow. At age three, Curly was still not saying his name. He could say “Mummy” and “Daddy” but not his name. If you asked him his name, he would not answer.
When you leave your child in the care of others, you value their input because they spend a lot of time with your child. That’s why we made the decision based on our daycare providers’ recommendation to take him to a paediatrician. What the daycare providers had to say mattered because they knew my son well enough to know when to feel concerned. In our eyes, Curly was fine although slow with speech development. In their trained eyes, he was not fine.
After they suggested the assessment, the Scientist and I thought long and hard about it: It could be true, we said. Curly seemed to become angry and frustrated very easily, and his levels of frustration were frustrating us. At home and at daycare, he was having mood swings and seemed to become angry for no apparent reason.
Curly’s tantrums became more and more problematic, even catastrophic, on occasion. At parties or play dates I was forced to remove him from the crowd so that I could calm him down in another room. At daycare, they tried to manage his behaviour with time outs, but when it didn’t work, they realized that perhaps something was not “right” with him.
His eye contact was not always direct. Most of the time when we spoke Curly would not look at our eyes or mouths. He would turn his head as if to give us his ear instead while gazing into the distance. He would stay quiet as we spoke.
Curly also exhibited repetitive behaviours. He would build block towers and knock them over repeatedly. Build, knock, build, knock, until someone stopped or distracted him. The good thing though was that we didn’t have to have a particular set schedule for his evening meals and bedtime.
We also noticed echolalia – repeating back (echo-) what is said (-lalia). At times Curly would repeat phrases without knowing what they meant. For example, when asked, “Would you like a drink?” he would repeat the question back to us instead of providing an answer.
In addition to repeating what we said, Curly would also look at the same book repeatedly, as though he were reading it over and over. He went page by page, being careful not to skip a single one. If he accidentally missed a page, he would go back to it. And once in a while when distressed or upset he would walk on his tippy-toes or run around the room once or twice.
My Curly also (very rarely) put his hand in front of his left eye, flicking his eyelid backwards and forwards. I used to think that maybe he was playing with his eyelashes, but later realized it was like a tic.
Aside from these observations, Curly was a healthy little boy with no abnormal medical history. He was delivered via c-section because he was past his due date and because of some foetal distress.
At the end of this big thinking exercise, my husband and I realized that something must be wrong here.
Taking that Step
We requested that our general practitioner kick-start the assessment process which would be long (about six months) and painful. We later saw a paediatrician who conducted the initial assessment and was the first to mention the word “autism”. She said that she was concerned, but not to take her word for it until the results came in from the others. We sought individual assessments from a speech pathologist and a psychologist who both specialize in working with children with autism.
While we were driving up and down the suburbs for our weekly visits, we enrolled Curly in initial speech therapy as a “bonus” so that a speech and language professional could monitor his progress. This was done by a different speech therapist than the one conducting his assessment to avoid a conflict of interest. So my son had been seen by a total of five professionals – general practitioner, paediatrician, speech pathologist, psychologist, and speech therapist – in the span of just six months.
We also had to rule out hearing issues so we went to an audiologist who stuffed up his assessment and failed my Curly because Curly was too busy exploring the assessment room instead of listening. He said that my son could not hear much in one ear. We later took him to the Children’s Hospital for another assessment which he passed.
My poor son. What a pile of stress. I cried so many times over those six months. But I have never cried as hard as I did the day I was told that my son has autism.
The Diagnosis aka Life Stinks
“Sorry, but your son has autism,” said the paediatrician with a sad face. “Autism Spectrum Disorder.”
The conversation is sort of a blur to me today, but I do remember craving for the Scientist who was unable to attend the appointment. I craved his embrace because I needed someone to hold me and tell me it was going to be OK.
I also remember strapping Curly into his car seat after walking out from the clinic. I remember giving him kisses and caressing his cheeks as my tears poured out. I remember telling him that I was so sorry for what he was about to experience – more stress, more sessions.
I remember getting into the front seat. I remember strapping myself in. I remember crying really, really loudly with the windows rolled up, before I drove out of the parking lot. I remember not caring that anyone could see or hear me. I remember not caring that my son would think I was weak. I remember needing to let it all out. I remember my broken heart. I remember being afraid of the future. I also remember asking God, Why the heck did you let this happen?
I remember that day as the day autism came into my life. That day stunk, but at least we had a diagnosis and that diagnosis would qualify us for assistance for my son.
Life after diagnosis is challenging, interesting, painful, and exciting. It’s a mixture of all of these things plus many mini-celebrations whenever Curly does or says something new that gives us hope that one day he will finally be able to sound and act ‘normal’.
Challenging, but Exciting
We’ve come a long way over the past 12 months, all thanks to sessions with the speech therapist, psychologist, and occupational therapist. Today Curly is able to say many short phrases, but he is not able to have real conversations yet. He is able to say things such as, “Mummy, I… want… ice cream…please”, but he says them with pauses in between words, just like we’re teaching him. He has now started to remember to use words at the right time without us prompting. Very rarely he forgets and starts to babble. We then prompt him with, “Mummy, I…” and he finishes the sentence. Once in a while he will say his sentences without pausing and we’ll congratulate him.
Coming to Terms with it All
DENIAL: As new parents we don’t know what we don’t know and we don’t see what’s right under our noses until someone from the outside points it out. First, we get defensive. This is our baby they’re talking about. How cruel of them to think that there’s something wrong with our baby! Later, when we start to do research on the issue, we want to see all the arguments against it so we can say, “See? They can’t really tell if a toddler has autism. They are too young.”
CURIOSITY: Then we start questioning things and go on to investigate a bit about autism and what signs the child may be showing. We get in contact with specialists and go through the whole process to find out if our child has autism or not. They diagnose our child and announce it to us nonchalantly as though they are telling us, “Your laptop was dropped. We can try and fix it.”
BLAME: Then we start blaming ourselves and questioning if we have autism, too. Did something cause our child to have autism? Did he bump his head when he was a baby? Did we feed him something his brain didn’t agree with? We consider all of the possible reasons for why our child is like this.
ACCEPTANCE: We agree to take things as they are. Our child has autism. Fine. Let’s deal with it. Might as well start early and get him the best possible services. Acceptance is also the phase in which we need to agree that we will not see our child as an alien. This is our child. We love him no matter what. Perhaps he is unable to be “normal” but he doesn’t deserve to be treated as an alien. We will need to be his protector when the rest of the world attacks his abilities and his differences.
Painful Phases: Tantrums and Frustration
With Curly we had more tantrums at the very beginning than we do now. Through his sessions with the specialists, he’s been taught to control his emotions a bit more, to pause and think before he reacts, and to recognise that other people are able to soothe him, calm him down, and protect him when he’s in pain. Here are some examples of what we went through:
CROWDS/NOISES: There were days when we couldn’t eat out at restaurants because Curly wouldn’t sit still. He would always throw a fit. We noticed that he did better in smaller crowds. So we began taking him to smaller, less crowded places first, and gradually introduced him to the idea of being around larger crowds.
LOST IN SPACE: I don’t think there is anything more scary than watching my son get lost in his own world. Sometimes I feared he would never come out of it, that he could accidently get stuck in there. My son never rocked back and forth, screamed, or flapped his hands like some autistic kids do. But he did, for almost a whole year, spend a lot of time on his own as if we did not exist unless he wanted cuddles.
TOO MUCH ENERGY: We used to think, “Oh wow. He’s full of beans. He’s able to do more than many kids do!” Curly would go on the big kids’ slides on his own when he was only 2 years old, swing from the monkey bars without support at 3 years old, and run around the football field without getting out of breath. The Scientist would sometimes beg me to take over the running because he was tired. That’s how much energy my son has. He did these things until we were told that we needed to reign him in and teach him to calm down. He is now able to stop and regroup if we call out to him. Before, he used to be in his own world and didn’t hear a word we were saying.
HIS WAY OR NO WAY: Curly had to be taught how to share and how to be patient. If we were driving along the same route as the route to his grandparents’ house and then made a sudden turn to go somewhere else, he would throw a tantrum… every time. Eventually through therapy, he was introduced to the concept of accepting change and we started to see improvements in his reaction to a change in routine.
FRUSTRATION: Curly would get impatient, frustrated, and angry when he couldn’t get things to work the way he wanted them to. For example, he would get frustrated when trying to open the milk carton, put his books back onto the shelves, and squeeze out toothpaste. Today, Curly gives it a go and if it doesn’t work he comes to us and asks for help.
We are beginning to see the light at the end of the tunnel. Life is much better today than it was last month and the months before. We’re slowly improving and discovering new ways to help our son.
This is a modified version of an article that first appeared on the blog, Silly Mummy.
The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.