12 years ago, our family was grieving and processing our son’s disability. At three years old he was diagnosed with Autism and ADHD.
It was a very difficult time for our family but looking back, we learned much. While we, and others around us, spent a lot of energy trying to problem-solve and “fix” our child, we gradually came to the realisation that the most important thing we could do was accept him, as he was.
Daniel is now a thriving 15-year-old boy with Autism who still struggles to understand the world, what people say and how to interact with others but he is a young man filled to the brim with joy and determination to win at life! He is loved and he knows it.
I am sharing our story about what it was like when he was first diagnosed with Autism, as I know that many families struggle when their child is newly diagnosed.
There are also other families out there who wonder if they should be seeking support and asking questions.
There is no shame in wanting to know if your child needs support. Really, the sooner you investigate, the better. It doesn’t mean that you are a paranoid parent or that you have somehow failed. It means you want your child to have the support he or she needs from as early as possible if he or she needs it.
At 15, Daniel still needs me to advocate for him and together we face challenges parents of neurotypical kids don’t have to deal with, but I can tell you this, Daniel will be able to live an independent life and hopefully one day he’ll also have a family of his own (he’s great with kids). I feel confident that we’ve done all we can to set him up for a bright future. Here’s the beginning of his journey.
Waiting for Daniel: The Beginning of Our Autism Journey
For three years now I have been waiting for Daniel, waiting for him to find his way out from wherever he has been hiding.
When my first son Liam was about 16 months old I remember walking along the footpath with him, pointing at all the trees, rocks, flowers and houses with wide eyes. He would stop and intensely examine a flower and say “fower”. He would point to a leaf and say “lee”. It was so wonderful to see his mind absorbing the world and I cherished every step. We took it for granted that talking was a natural occurrence.
When Daniel was a baby he progressed very quickly through the rolling, crawling and walking stages and I thought to myself: “We have a really gifted boy here. I mean, look at how soon he is reaching his milestones!”
Noticing the Signs
The first sign that something was amiss was when his father noticed that Daniel wouldn’t say Dadda (something Liam had said at about 8 months). We kept trying to encourage him to say words but were always met with stony silence.
We kept waiting and waiting for something to come out of his mouth. Eventually, he did say mumumum but not much else. Not even a “no!”.
He would pick up the odd word here or there but we didn’t hear him say anything much until he was two and then it was no more than about six words.
At about that time a friend who had been babysitting Daniel on occasion mentioned to me that perhaps something wasn’t quite right. I dismissed her concerns because I just thought he’d catch up eventually. People kept saying to me, “Just be patient. He’ll catch up! Some children just start talking in sentences all of a sudden.”
While I found this encouraging at the time, it gave me false hope and meant that I delayed seeking help for my little boy.
Another friend of mine who was training to be an occupational therapist (who also babysat Daniel from time to time) suggested to me that maybe we should take him to a speech pathologist to be assessed.
At that point, we were confused about what to do. His behaviour had been getting more and more aggressive and he was repeatedly breaking into the garage and climbing up on top of the car and climbing up on top of the TV cabinet. He would do this about 50 times each day. It was exhausting and when I pulled him down from whatever hill he had climbed a tantrum of gargantuan proportions usually followed.
Initially, we had put down the increase in aggression to the birth of his new baby brother but when it persisted we wondered if there might be other issues. However, we also still held onto the hope that one day Daniel would just start speaking and behaving just like most other children his age.
So, not really knowing who to go to for help I made an appointment with a paediatrician and went along to see what he would say. Daniel happened to behave particularly cooperatively that day so I guess it was hard for the paediatrician to make any kind of true assessment but I was shocked at how quickly I was dismissed.
He told me I had a discipline problem and to go and do a Triple P Parenting course.
It took just five minutes for the paediatrician to size me up as a paranoid mother who didn’t have a clue about parenting. He told me I had a discipline problem and to go and do a Triple P Parenting course.
I went away feeling embarrassed and insulted but most of all at a loss as to what to do next. I knew enough about Triple P to know that it would not help me with Daniel and I felt misjudged and helpless. Was nobody going to take me seriously? I feared going to see anyone else lest they treat me the same way.
We left it for a few months but Daniel’s behaviour seemed to escalate. If he was upset or didn’t get his way he would alarmingly self-harm by banging a matchbox car against his head. He’d sometimes throw himself on the ground or throw objects across the room.
Most of my treasured trinkets from the top of the TV cabinet are now in pieces. He would run away whenever we went out. The daily school trips became a nightmare as I spent a good 15 minutes every morning searching for Daniel, panicking that someone had taken him or that he’d run out onto a road. Some days I just couldn’t cope with the fear of losing him and strapped him tightly in the pram which he thoroughly resented.
One day I tried taking him to a local library for story time but when he attacked another child it was clear he was not coping and we had to leave. On another day he fell in the local lake after running away and at the time I thought that would deter him from going too close to the edge again but the very next day he was climbing back onto the rocks precariously close to the water.
Disciplining Daniel has been a huge challenge. It takes every ounce of my energy to engage him, to hold him when he cries or throws a tantrum and I often get bruised and battered in the process. On occasions, I am ashamed to say, I have regressed and smacked him out of sheer frustration but then it all too soon becomes clear that traditional discipline just doesn’t work, especially with Daniel. It took us a while to learn that his aggression was due to his inability to express himself.
An End to Denial
By the time he was nearly three, it was very clear to us that we needed to stop living in denial. A friend of mine sought some information for us about a local therapy support practice so we called them and filled out the paperwork in the vain hope of getting an appointment sometime in the next 12 months. It was quite a shock to complete the part of the questionnaire where I had to list all the words he spoke. I could only count about 20 words in total.
As a mother, it is hard to stand by and watch your child become so frustrated with their inability to speak that they lash out against anyone that happens to be in the way. It is heartbreaking to see other children avoid him because they fear getting hurt and to see other parents glare at him because his behaviour is not socially acceptable.
The thought of Daniel having to cope in the regular school system frightens me. How on earth is he going to cope? Would teachers just dismiss his aggression as bad behaviour as I have seen them do with other children in my older son’s class? Would he be put in a special education unit with children who have severe mental and physical handicaps and always feel like there is something wrong with him?
We received a letter back from the therapy support practice a week later saying that Daniel had been prioritized as an urgent case. I cried when I got that letter because it was the first time his Autism became real. We had finally accepted that Daniel needed help, that he wasn’t magically going to start talking in full sentences and that it was our job to help him.
We had our first appointment with the speech pathologist and again the tears flowed. It was the first time a professional acknowledged what we had to deal with on a daily basis. There was no five-minute appraisal, no suggestion that Daniel was not developing because of something I had done. It was the first time anyone had given us any real idea of how to help him communicate.
We still have a ways to go on our journey to unlocking Daniel’s full potential but what has changed is our acceptance of him as a neurodiverse kid.
Instead of waiting for Daniel to change and develop, we have changed and taken responsibility for helping him cope with the world by striving to better meet his needs and help him learn in a way that suits him. We’ve abandoned unrealistic expectations and celebrate every progression. Every new word is music to the ears. And despite the hard work involved in keeping up with him, we love him more than words can say just the way he is.
Originally Published in Natural Parenting Magazine, Spring 2006 and AQ News Action, 2007. Republished on the mumatopia.com blog. © 2006 to 2018 Cas McCullough. All rights reserved.