I am the parent of an autistic child. There are days when showering is not an option for me and days when I lie in bed and sob for hours. This is the reality of being a parent to an autistic child with high support needs.

My journey as a parent started off joyously. I had such exciting plans for my family. There would be travel and parties. There would be school excursions and friends coming and going. That was what my home was like. My mother never quite knew how many would be at the dinner table. Our home was a continuous hum of commotion, laughter, and chaos; of course, my mother yelled at us all to clean the house and pick up after ourselves. And even though my mother yelled a lot, I have fond memories of those days. So, I was excited to start my own journey of chaos as I anticipated the arrival of my first child.
The beginning of our journey
An emergency C-section saw my firstborn son come into the world with its own kind of Chaos. But he was safe, and I was embraced by a love I had never known or felt before. He was perfect.
It was around his 3rd birthday that we visited our paediatrician, concerned that our son was behind in developmental milestones. After what seemed like an eternity, we received a diagnosis of Autism. The whole process was lengthy and expensive.
I was devastated. I knew absolutely nothing about Autism and immediately fell into what I called the Doom Search—desperately looking for ways to help my son. Everything I read was terrifying. And I only knew what Autism was from the Movie Rain man or the tv show, Big Bang. I grieved for my son, and I grieved for myself. I thought that my dreams were over, and I was devastated. While looking back on the early days, I often feel guilty for those feelings, but they were real.

Read more Tips for travelling with autistic kids.
The reality of today as an Autism parent
Today my son is 10. Each day brings its own challenges. My son is still nonspeaking; he often goes days without eating anything nutritious, instead grazing of potato chips and crackers. And he will not sleep. Sleep is the hardest part. I am often up all night as he roams the house and plays on his iPad. He is still young so I can’t just leave him. I doze off every now and then, but I rarely get more than 3 hours of sleep in any one block. Because of this I do resent the situation I am in. I can’t think straight at the best of times, and all I want is 12 hours of sleep in one block. It feels selfish even to want this.
Don’t get me wrong. I love my son and always will, but we need our lives to be a little less stressful. I need help. Although I have no idea who can actually help us. Would his life be easier if he wasn’t autistic? Will the world change to accommodate his needs? What will happen to him if we are no longer here to support him? These are questions I ask myself almost every day.
I want the very best for my son, no matter what that looks like. But it is difficult to maintain such resilience and stamina when life is this difficult to navigate. I often feel like it is us against the world. Continually battling for help and support. We seem to be forever justifying our son’s needs and his worth for basic assistance and accommodations.
Still learning
I now know a lot more about Autism. I went beyond the “Doom Search,” and I have learned that meeting his autistic needs can enable him to live a fulfilling life. We now know that talking is only one part of communication. We have learned to educate others and ignore the ignorant masses. And it is getting easier to ignore the unsolicited advice and glares from onlookers when my son is in the midst of a very public sensory meltdown. While what I have learned makes life a little easier, I have to acknowledge that life is still very difficult.
We (my husband and I) often asked ourselves, when will our son be given the opportunities to shine and thrive like the many other autistic people we see thriving in the world? When will it be his turn? And sleep, when will we all be able to sleep?
Even writing this I wonder what the future holds for my family and myself as an autism parent. I dare a little to dream of an easier life. I also dream of sleep; in case I didn’t mention that already.
Written by Anonymous