The very word ‘intervention’ implies that there is a need to prevent something from forming further. It is also a word used to describe the process of improving a medical disorder.
Can we move beyond the idea that autism is a medical disorder for a moment?
It is an identity, a culture, a way of being.
And whilst I understand that we are all different and some of us have more significant support needs than others, the word intervention sends a message of urgency and alarm.
One of the most alarmist and false statements I have ever come across has been:
“There is a small and urgent window of opportunity for early intervention for autistic children”.
It led me down a path of fear, dread, panic and feelings of failure as a parent.
It had me choosing whatever therapies we were able to access for our non speaking child, at any cost.
We remortgaged our home, emptied our savings and hit rock bottom, investing in ‘evidence based’ interventions.
We were told our young daughter at the time would not speak in the future if she wasn’t already speaking and that this was a hard reality we would have to face.
On the back of this, we were given recommendations for autism specific education.
The harder we pushed, the more she resisted.
She resisted any forms of communication.
She resisted joining us for family events, even meals.
She resisted us.
Because she wasn’t safe. And that’s a hard reality we live with, years later.
Statements such as the one above feed sad, uninformed and unnecessarily popular narratives around autism and life raising autistic children.
The first five years of a child’s life are the most important, foundationally, yes.
When a child is typical (non autistic), we relax into when they hit their milestones, how they learn, when they speak to a certain degree.
It’s not uncommon for a concerned parent to be turned away by professionals, friends and family with reassuring advice such as “In their own time”.
When a child is autistic, this isn’t so.
Panic is instilled at each and every turn.
I’ve even witnessed urgency promoted around particular developmental milestones in autistic children and therapies where panic wouldn’t be considered had the child not been autistic.
There are often expectations of autistic children to perform certain tasks, to socialise in particular ways, the sleep the night through, to eat a variety of foods, even when their non autistic peers are not.
The pathology of autism has such great potential to instill fear, panic and stress in families where it is completely unnecessary.
We are overlooking children.
We are focused on the diagnosis and not the child.
It took six years for our family to demonstrate to our little girl that behavioural modification therapies were a thing of the past.
It took six years for her to trust us.
Slowly the strength and tenacity of her resistance and self preservation softened as she witnessed and experienced consistent support and unconditional acceptance.
Six years of recovery for her, and for us as a family unit.
Six years of silence.
She spoke at eight years old.
She began to let people see her at eight years old.
She began to allow others to know the depth of her knowing; her awareness, her intelligence.
At eight years old.
She began to participate in class at eight years old.
She spoke when we accepted that speaking was not important, and communication was; however that looked for her.
There is no urgent, small window of opportunity for intervention for autistic children.
There is only support, and it is lifelong.
Support will grow, change, evolve with our children and ourselves.
Autistic children are still children, who grow and develop at their own rate.
It’s okay. It really is.
You are not failing your children by providing them space, time, freedom and love.
Sending love, strength, support, solidarity and courage to all families.