How the Autism Diagnosis Process Fails Families
And why choosing to walk a different path was the best decision for our family
The diagnosis was supposed to mark the start of a positive journey - it was finally our turn.
Your child’s name has been called after years of waiting and the healthcare system will finally provide the support and guidance you have been searching for.
Yet, the diagnosis was the start of a negative journey. The best thing we ever did was ignore and reject most of the advice the “professionals” gave us. But let me take you back to the beginning.
I remember when I first heard the words “autism” my mind drew a blank.
I had no idea what it meant for him or his future — would he have a future? I was afraid. A whole world opened up before my eyes, a world I did not know how to navigate.
How can I help my child find his way around here if I cannot find mine?
I sat attentively taking it all in. All the things I thought were my little boy’s quirks were now being explained by this word — autism.
When he was diagnosed, I sat waiting for the outpouring of support and guidance that I naively expected. But there was none.
The multi-disciplinary team of various professionals seemed redundant. No one offered the next steps, there wasn’t a plan, nothing.
Do you know what we heard instead…
All the things that could, would, and were most likely going to go wrong.
They told us he may never learn how to speak. But to stand any chance, he would need speech therapy… but the waiting list for a place was years and the clock was ticking. He was at the perfect age for early intervention but there was none.
So the one thing that could help him, he couldn’t have, until it was probably too late. Did I hear that correctly?
I was told that he may never use the toilet independently and that his refusal of any food that wasn’t beige was there to stay. I was told that it was unlikely he would attend mainstream school and that he might have intellectual disabilities and a range of comorbidities. Our doctor looked at us sympathetically and said as if she were delivering the news of death:
“You are allowed to grieve the child you were expecting”
This hopeless interaction is what hundreds of families report experiencing in Facebook groups and on Whatsapp chats as their “welcome message” to being the parent of a neurodivergent child.
I am not saying the diagnostic process should be all peaches and cream. I am not saying that what the doctor shared was untrue. Autism is a spectrum that presents and affects each person differently.
But, when all you are shown is darkness… it is hard to see the light.
When you are given a long list of all the things your child will never do and when your hopes are crushed because you think they know better. When the world around you serves up this helping of hopelessness. How can families be expected to find a way forward?
In this new world, I felt lost. But instead of listening to the words that promised us a hopeless future, I looked at my son. Often, he would lay sideways with his head against the hard wooden floor focused on lining up his trains in perfect formation. Looking at him would lead us down a very different path.
“Hold fast to dreams,
For if dreams die
Life is a broken-winged bird,
That cannot fly.”
- Langston Hughes
I could not provide a meaningful and happy childhood from a place of despair, so I decided I would not sit waiting for the story they told about my child to unfold.
The best they had to offer was grief. That word made me feel sick.
I wondered if they considered what would happen as parents let go of their living breathing child. Did they pause and ask how that child was supposed to make progress and laugh while their parents grieved because they didn’t get what they expected?
A child’s world is coloured by the adults they are with every day.
If someone believes you are less able or predicts you will not achieve a, b, or c — without giving you the space to try. Would you thrive in that environment?
Yet, we expect neurodivergent children to thrive in negative environments. Environments where adults openly talk about what they will not do, how they did not behave, and why they need more therapies that try to bend them into shape — too blind to see that this only turns a child inside out and has them searching all their life for a space to be accepted for who they are.
I refused to look at him through the ableist lens of an outdated medical system. I refused to predict his future using limiting diagnostic criteria that ignored lived reality. I refused to join the terrified communities of parents signing up their children for detox drinks, protocols, and magic pills that promised to wash away my son’s wonder. As if, he was something to fix.
I decided to keep my eyes on him and he kept the wonder in me.
I followed his lead as he pulled me into his world and showed me the most beautiful places. We planned our life around avoiding the crowds, we went to soft play when all the children were busy at school and before the mum groups began.
We explored the world when it was quiet. That was the only way he could enjoy the world without noise-canceling headphones or becoming overwhelmed.
The beauty of spaces and places when nobody else is there. You can enjoy all the details you never noticed before. You can just be. By embracing our life as a neurodivergent family, we found so many hidden gifts in our path.
I still do not know what the future holds and what fun would life be if we did?
All I know is that our little boy’s world is not grey, it is full of colour. He paints each day with beautiful bright colours of unending curiosity and wonder. He continues to surprise us and surpass all the limits that the diagnosis placed on his tiny three-year-old shoulders.
The diagnosis is the first step for so many families but we do not have to embrace a process that hurts our children and us.
Children do not fit neatly into a box and no single word or diagnosis could ever capture the brilliance in every child.
Looking back now, five years since the diagnosis, the best thing we ever did was to find the courage to choose a different path. I am grateful that we let our son show us who he is, define his limits, and write his own story — free from the template the professionals wanted to print off for him.
You can do that too.
We can talk to autistic people, listen to the community, and learn how to parent our children from a place of affirmation not grief.
P.S. If I had to recommend one book to understand autism better it would be “The Reason I Jump.” It is written by Naoki Higashida, a 13-year-old non-verbal autistic boy who describes his experience of the world.
It changed my life and I think it will change yours too.
