Why is parent advocacy so important?
Jul 15, 2020
Why is parent advocacy so important?
A little girl that I love very much, a little girl raised inside a family I know who celebrates autism and advocates hard for change, asked me last night:
She described her difficulties at school; a school that she loves attending.
She described her difficulties in many environments where she is accepted as autistic.
And the one common theme?
"I'm always doing the very best I can", she said, all of six years old, her bottom lip quivering, "..but adults are always getting angry with me and I can't make myself be different".
I sat with her and we talked. We watched videos of other autistic children her age, talking about their autistic experience. I shared my own challenges as a young person knowing I was different. And we both realised something important.
Our difficulties weren't about being autistic; they were centred around being misunderstood and having our disability mistaken for wilful behaviour.
It isn't autism that disables our children, it is a society that is standardised for and by neuronormative standards. It's the society that expects us all to be 'able' to do the things that have us neatly fit into a manageable, predictable package.
We can cultivate a culture, build a foundation of positive autistic identity for our children; but if that doesn't extend beyond our family homes, people will not understand and accept our children in their authentic expression. Nor will they know autism from the inside out; rather than having a heavy reliance on books written by non autistics from an outsiders observation of behaviour.
It's when we go out into that world and experience that unspoken discrimination that we internalise the beginnings of "What's WRONG with me?" as autistic people. And sadly, for some of us, even the safety of our family home embracing autism will only extend so far as a comfort.
When we leave the safety of that nest, our educators need to know us and understand us; as does our workplace. Society needs to understand that accommodations and supports are not an advantage when we're starting behind; they are a pathway to the same destination as our peers - also known as equity.
As parents, we often won't be popular. We often won't be believed. We'll even often be held responsible for our childrens' disabilities. We'll learn that the term and myth of the "Refrigerator Mother" was never truly extinguished, but modernised into blaming anxious parents for anxious children (sometimes unidentified autistic parents).
We'll be held at the whim of those who see glimpses into our childrens' best moments perhaps - the moments where they mask in times where their sense of safety is unstable where judgements will be made from those glimpses about their ability.
Our children may be held accountable, have expectations placed on them in alignment with the 'support' number assigned to them in assessment (Level 1, 2 3); whilst we know that support needs fluctuate from moment to moment.
Where our children are unable to attend school for whatever reason, we may be threatened and/or visited by protective services; forcing us from the space of fear to continue engaging our children with services that may not be right for them and even traumatise them.
Fear is an appropriate and rational response where rights are taken away.
Fear is what is used to control.
There are going to be times in our lives where as parents, those decisions that may seem terrifying because they are different, because they go against the 'norm',
may also be the very decision we make that will save our children's lives.
Our children are autistic. They were identified autistic for a reason. It is absolutely nonsensical to identify a person as being inherently different, neurobiologically, energetically, mentally and emotionally different and to then treat them as though they are non autistic people who are disordered.
I am not a disordered non autistic person.
My children are autistic.
We are born autistic and we will die autistic; proudly autistic.
As parents, we must write, speak, stand up, be honest, repeat ourselves, fight, advocate. And we don't have to be loud, standing in the streets to do so.
But this cannot begin until we create a pathway for that fire in our belly; and that fire in our belly will often be simmered down by our own trauma. By our own sadness, our own pain, our own unidentified neurodivergence, our fear of being different and feeling insignificant.
I hear so many parents come into session with me and describe themselves in ways that are less than. I witness parents pouring their hearts out; so many emotions, so many experiences, still self blaming and self rejecting.
From the outside looking in, I see power.
I see intuition that has been disconnected by the same society doing the same things to us as children as it's doing to our children now.
Our experiences can be channeled into creating the new. This is how change is created; new pathways forged. But it must begin with us. It must begin with healing ourselves.