How I felt when my daughter was diagnosed with Autism
I always knew my daughter was quirky. Quirky is such a great word to describe the slightly off-beat nature of people who don’t fit into our moulds. She was serious and intense, but also so full of imagination and creativity. And smart. Oh, so smart.
When she was three, we marvelled at her home-made computer’ - the one she created out of cardboard and meticulously copied the complete keyboard from my laptop. I wasn’t quite prepared though for the tears of despair when she realised that she couldn’t insert a CD into the drive. I assumed that she knew her computer was not a functioning laptop. I was wrong.
She lived through her childhood and teen years in a swathe of creativity, designing, producing and writing. Her creativity and desire for knowledge lead her down some interesting paths. We had the Murray River turtle phase, the ancient Troy phase and the Mozambique phase. Each phase represented her deep dive into a fully immersive experience, absorbing knowledge, creating art and writing about her current special interest. She taught herself Spanish with great focus but barely tolerated the routine of school.
We lived with mood swings and difficult conversations. She often demanded answers for the unanswerable, wanted details of future events and spoke her mind unfiltered. To us, she was beautiful, quirky and self-driven, a challenge to parent, but she always took us down interesting roads.
We worked for years to coach her through social situations, taught her how to use intonation to show emotion, talked about relationships and the ‘code’ of social skills. She was a quick learner and was able to mimic what she needed to know.
As a professional who works with children and adults with autism, I always knew that our daughter had many traits of autism. But I never saw the need for a label. She achieved academic success, had a group of beautiful friends and had bravely taken herself overseas for an adventure. We had coached her through challenges and felt she was ready to fly.
Last year, however, my daughter, aged 22, decided she needed a label for her quirkiness. Initially, I didn’t understand why she wanted to go down this path. She is successfully studying at uni, she has an amazing partner, and her life is moving forward.
Then she took the time to explain it to me. Her whole life she has felt out of sync with the world and has been bravely battling through it. On the surface, she has learned to mask her quirks, but underneath she has been continuously scrambling to fit it. “Did I interpret that look or comment correctly? Did that person mean what they said? Did I smile, right? Was that a joke? Am I supposed to laugh?” She explained how she battled literalism, the impact that her sensory processing issues were having on her body and mental health, and how mixing in the world jars her senses and exhausts her mind. She described how she struggles to regulate her emotions and behaviours and frequently forgets to eat as she is not aware of her physical needs.
My daughter was diagnosed with level 2 autism. She sought this diagnosis to “legitimise” the struggles she has had all her life. The diagnosis has given her the freedom to be who she actually is. She’s owning the label and not pretending that life is easy. She is real about her daily battles and now understands that it’s ok to be different.
So how do I feel now that my daughter is officially autistic? I wish we had taken her for a diagnosis earlier. We would perhaps have made some different parenting decisions which would have eased her load. I would have looked harder at the traits that gave her the diagnosis, tried to understand them and allow for them instead of passing them off as mere ‘quirks’. I like to think I would have made adaptations for her sensory needs, and been more patient with her.
A diagnosis of autism is not a limitation. I have learned first hand how a diagnosis can bring a sense of relief and freedom to the individual and the family. A diagnosis of autism can be a beautiful celebration and validation of the ‘quirks’. As parents, it gives us the freedom to explore our child’s needs and behaviours and permits us to parent them in a way that suits them best. For the child, a diagnosis can open up doors of understanding and allows them to connect and identify in new ways.
There will always be people who view a diagnosis of autism through a narrow lens. However, autism can encompass so many traits. If you are wondering about your own child’s ‘quirks’, I believe it’s worth investigating them sooner. If I had known how hard my daughter was working to keep her traits in check, I would have understood and supported her better. Her traits are a core part of who she is, and without them, she would not have become the same beautiful woman that she is now.
So how do I feel now? Honestly, I feel a twinge of regret that I didn’t see the benefits of pursuing an autism diagnosis for my daughter. I am so proud of her journey, and I now understand her and feel better equipped to support and encourage her.
At Newcastle Speech Pathology, we work with adults and children who have autism. We seek to understand each individual’s needs. Our Speech Pathologists are adept at helping clients develop the language and social skills necessary to become effective communicators within their families and communities.
For more information about Autism Diagnosis for children and young people, watch the video below to hear from Dr Andrew Wilkinson, Director and Clinical Psychologist from See Hear Speak Psychology.