When I was very small, I didn’t understand the world around me like other children did. One of my most vivid is standing in my school playground. Every child was doing something different—a beehive buzzing with activity.
I stood quietly, not knowing what my role or place was within this hive. My teachers tried in vain to encourage me to socialize, but it had the same effect as asking someone who can’t swim to simply “jump in.”
I had just come from a pre-school for children with mixed abilities and entered into the mainstream school. I was frightened and prone to tears, not a good attribute for a child wanting to make friends.
I had very complex needs as a child. While in school, I had to have a classroom assistant as I couldn’t communicate well with my peers and found it hard to fit into the overall structure. In hindsight, I know it helped me greatly, but it came at the expense of feeling different to everybody else. I felt I was looked upon with pity and contempt. I know the schools tried their best to help me fit in and feel like part of their community, but it often led me to being marginalized as opposed to being included.
Like so many other autistic children, my mother is my soulmate. Much of my childhood was spent alone with her in our house. She had to give me her undivided attention as I would become upset and scared if she wasn’t nearby. She knew my likes and dislikes even before I did, never mind being able to verbalize them to other children or teachers. She understood what I wanted and knew when to soothe me when I said too many words!
My mother and I have an unbreakable bond to this day, and we both dread what life would be like without the other. Although life was very stressful for her when I was small, she can recall some of her trials and tribulations with me fondly. She went through the same “autism parent” journey as most go through.
She fought for a diagnosis, wrote numerous letters, and was seldom off the phone trying to get me appointments with specialists. Whenever I did get appointments, my routine was disrupted, and I often destroyed the clinician’s office.
When I asked my mother in adulthood how she coped while raising me, she gave a very valid point. Childhood is only a small portion of a person’s life. On average, humans live for around 75 years. From birth to 18 years old is only a small percentage of that. Whilst my quirks were frustrating for her in the moment, she always played the long game.
She knew I would one day turn 18 and have to survive in the wilderness of our planet. Her strategy was to teach me how to become a responsible and caring adult, as the world was not going to stop and accommodate me very easily.
Growing up, I was given the same amount of household jobs as my sister Emily. Emily is almost three years my senior and lived in my shadow for much of our childhood; I was a more complex character than she was. Despite this, I was given the same tasks, and my mother persisted with me until the dishes were done correctly, and my bedroom was tidy.
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I hated going shopping, and so did my parents because they knew they had to take me. In shopping centers and public places, there are often sensory rooms. These rooms are designed to soothe agitation and be a safe space away from the incessant rumble of life that everyone else can filter out.
These rooms didn’t exist when I was small, and no matter how much I screamed and cried, my parents went about their shopping to teach me the world wouldn’t stop for me and that I would have to survive.
When I got home, I would be reminded that during the shopping trip I didn’t die or encounter any horrific terror. I survived, and I was praised for surviving despite the tears and tantrums. Sensory rooms seem like an easier option for parents that may not have a long-term goal. From a balanced perspective, I do see how sensory rooms can be of benefit for autistic children who also battle with intellectual disabilities and other health issues.
Immortality isn’t something modern medicine has mastered, and my parents had to teach me to slowly accept they wouldn’t be around forever and that my life would have to continue. Even though I had the intellect to complete the schoolwork of a mainstream school, I was introduced to the greater world in small doses as my coping mechanisms were not as strong as those of some of the other children.
As predicted by my parents and biology, I grew up. I passed 18, and I was able to progress through school. I went on to university to qualify as a social worker in July 2012. In July 2013, my son Ethan was born. I would have to keep this tiny, little human alive and try to conform to his routine without disrupting my own.
I had to go on yet another journey to accept that I’m autistic in order to improve my relationship with my son. Without my mother preparing me properly for adulthood, raising a child and being my own man would have been impossible.
Adulthood does bring its challenges for me, but with the right support from my family and professionals, I am a proud autistic adult. I want every autistic person to be happy and survive in this increasingly scary world without fear of judgement. I love telling my story, and I would love if other autistic people used their voices to tell theirs.
Many like me have worked hard to be able to speak; I just hope more voices can be used. When I advocate and speak to large audiences, I feel a sense of pride that the child who once couldn’t socialize is receiving a standing ovation in the end. I was ashamed of my childhood, but by my mother training me to be a happy and successful survivor in adulthood, I am who I am today.
This article was featured in Issue 103 – Supporting Emotional Needs