Autism acceptance: A mother’s journey
Rose Mabiza • 8 mins read
05 October 2023
It's every mother's dream to give birth to a healthy baby who will grow, thrive and live a happy and fulfilling life. However, we all know life is unpredictable and sometimes forces you to play with the cards you've been dealt.
In this blog, I’ll talk about my younger son who has autism. The past 13 years have been a long journey of discovery, frustration, tears, blood and sweat. Since I braved to write my first blog, I believe this is the most personal blog I've written.
Last Sunday (2 April) was World Autism Awareness Day, which was celebrated as part of Autism Acceptance Week in the UK. There was a lot of positive activity on various social media platforms, which made me realise that the world has changed remarkably over the past decade. I felt motivated to share my story as a mother of a teenage boy who has autism.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is a developmental disability caused by brain differences. People with autism often have difficulties with social communication and interaction, as well as restricted or repetitive interests and behaviours. Those with ASD may also have different ways of learning, moving, and paying attention.
The beginning of our autism journey
So, why am I sharing my son's autism journey? Why has it taken me so long to tell this story? Believe me; it takes a lot of bravery to do what I'm doing. I wish other mothers had shared their stories with me when I had no one to turn to. I wish there were blogs and articles out there to let us know it was OK. Sadly, there wasn't much out there when we desperately needed it.
My son's first 2-3 years were absolute bliss. He seemed to be meeting his milestones as expected, and there was no indication of any difficulties to come. At three, he was not verbal, and the nursery raised a concern. This triggered the health authority assessment process, but the results were inconclusive. His older brother's speech was also delayed, so the assumption was that he would be the same.
Our autism story: Starting school
My son was admitted to the local mainstream primary school following the local authority assessment. By then, he was starting to show signs of what we would know to be autism. Despite our pleas, he could not be transferred to a school for children with additional needs due to the lack of a diagnosis.
Things started to worsen at school. His speech was very limited, and he isolated himself from his peers. The teachers also reported that he was not engaging, with minimal eye contact or response to verbal prompts.
At home, the challenges weren’t relenting. He was scared of many sounds within the house, which meant many adaptations to our way of life. Repetitive movements and unusual sounds worsened. After endless appointments, he was referred to a speech therapist and referred to other health professionals. Finally, we were on the road to a formal diagnosis.
Getting an autism diagnosis
Our home situation kept worsening. It felt like the whole world had stopped, and literally, all our focus was on our younger son minute by minute.
He started having seizures, which meant we were constantly in and out of the hospital. They prescribed him various medications, which seemed to make things worse. It was heartbreaking to see him struggle with the side effects. Luckily, the doctors listened when we raised our concerns and discontinued the medications.
This period was one of the hardest for us. It was physically and mentally draining, and I do not wish for any parent to go through anything like this. As parents, we want the best for our children and will do everything to ensure they thrive.
Dealing with an autism diagnosis
After what felt like forever, we finally got a formal autism diagnosis. By then, it felt like life had stopped entirely. I got to know every little part of our house because we always stayed indoors. Whenever we went out, people would stare and make judgmental comments. Family members even questioned our parenting skills. Very few people seemed to understand what we were going through. What I also realised is that we, as a family, had not come to terms with the diagnosis. We had not accepted it; we were in denial.
Our understanding of autism improved vastly, but I didn't feel it was my duty to educate people about my child or correct their myths. It was so painful, and I would get home and cry my eyes out. We started to avoid busy environments, such as shopping centres, family gatherings and children's parties. It was so exhausting having to explain why your child is different. After all, he doesn't have visible physical disabilities.
We accepted the diagnosis and learned how to adapt our lives. Autism was part of our lives forever, so there was no plan B. However, you immediately realise that not everyone takes time to understand how you are doing. A few people understood, and they offered help in the form of kind words and checking whether we were okay. Some pointed us in the right direction regarding helpful services and tips. I will forever be indebted to these kind souls.
Impact of autism on family and work life
Have you ever heard the saying, "When you make plans, life happens"? We had a lot of plans for our boys, including buying a home, helping them build their careers, and travelling the world, among others. But, everything literally froze. We felt so guilty that most of our time was now dedicated to our younger son, yet our older son needed us just as much.
I still had a full-time job and would juggle work, looking after both boys, hospital and community care appointments and trying to live a normal family life. The good thing was that he was now in a specialist school. They were very supportive and gave us many helpful tips for building routines. Everything took twice as long to do, and we celebrated even the tiniest of milestones.
We had a small circle of friends and family who fully understood our situation and were always there to lend a helping hand or give us advice. Our son soon got comfortable with our inner circle. He knew he could just be himself, and no one would judge him, stare at him, or make derogatory comments. You see, even children with autism can read the room and behave appropriately in response.
Conclusion
This blog was very personal for my family and me. Just a few weeks ago, I wouldn't have had the courage to write a few lines. However, once I started, I realised that my family's story deserves to be told. Even if it helped just one child and family out there, I would be very happy. Even if it changed one person's attitude about children with disabilities, I would be the happiest woman in the world.
My son is now thriving in secondary school. He's the most wonderful soul. I hope someday I'll write a book about our journey and the life I wish for him and other children like him. I want a life where he can be himself without fear of judgement or exclusion. I hope to write more articles about our autism journey - the good, the bad and the ugly. Thank you for reading my story.
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