It has to begin with the good fight
When I look back over our family life from the past decade, it hasn’t been easy.
In fact, there have been many dark periods where we were completely disconnected.
Our marriage strained and pushed to it’s limits,
Our teenager leaving the family home in order to find a new freedom,
Our children struggling within the schooling system,
Our collective and systemic misunderstandings around what neurodivergence is.
Chronic illness, mental health battles, all the co occurring things.. (I reckon I could sing this along to the tune of “My Favourite Things” by Julie Andrews).
When we hit rock bottom, we were living across two separate homes.
Our children remaining in the family home always,
With us coming in and out depending on whose time it was with the children.
Those were sad times for me.
We both hated it; we all hated it.
However, being alone, having a year to think, to meet myself was an incredibly important thing for me to be able to do.
It was the first time I’d been alone since I was 18 years old, and I’m now 40.
Within our family units exists the trauma of uninformed practice,
Ill informed and ignorant perceptions informing current approaches and research around how to connect with our autistic children,
A system where parents are disconnected, disempowered, sometimes bullied.
On top of that, is the prevalence of unidentified neurodivergence in parents,
Leaving adults heavily masked, already fighting their own ongoing battles and trauma,
Then thrown into an intensive lifestyle of having strangers accessing their family life, regularly.
Questionnaires to complete, interviews to participate in,
Research to be done, decisions to be made.
The word ‘autism’ means that children will often no longer be afforded the same rights as their peers
They’ll be expected to engage in hours of therapy,
To be corrected and consistently analysed and worried over in every capacity.
And in the same regard, their families will also pick themselves apart,
Doubt themselves, feel they’re failing their child.
And the truth is that if we took every single possible approach and therapy in the entire world aimed at autistic people,
An entire lifetime wouldn’t be enough time to implement them all.
And, they’d still be autistic.
We’ll always be autistic.
When we eased up as a family,
Changed our understandings,
Tuned into our intuition,
Viewed our children as children,
Slowly but surely changed our lives,
Everything started to change.
There was relief.
We made the decision to sit with the discomfort of being disapproved of.
We said no to therapists who challenged our No and attempted to manipulate us.
We started to tell people what we would and would not accept within our family,
Just as any other family might.
We trusted in our collective family gut about people, places and things.
We began the process of weeding and feeding.
We weeded out anything that felt wrong and caused stress
And we created space in order to feed; nourish ourselves with the good stuff.
And the good stuff started to come.
The professionals who listen, who hear us, who respect our boundaries.
The NDIS funding professionals who also hear us, who go above and beyond to help, who also have autistic children
The support worker who is worth her weight in absolute gold, who cleans our home and loves our children
The community of parents who come together to nurture and support each other whilst respecting their children as complete and whole autistic people
It isn’t easy. It’ll always be challenging.
But supporting human beings to develop into who they’re meant to be will always be a challenge.
I regularly find myself in a position of having to use my voice.
That has been hard. Bloody hard.
I carry my own trauma, my own ‘stuff’ and I’ve had to trust in the process of what feels right for me
I do speak up
I feel all those feelings of self doubt,
Of feeling like I might sound unstable,
Of knowing I might be speaking another language to those who don’t understand and accept neurodiversity,
But I speak up.
I fill out forms for school and kinder by beginning with:
“We are an autistic family. We embrace our autism as an identity and a culture, away from being considered a medical disorder, and positive autistic identity is paramount in our lives and for our children”.
And I let it go.
I put our values, our intentions and our motivations out into the world and I move forward.
It gets easier.
And on the days where it isn’t easy, and I don’t feel strong,
I fake it.
I have enough practice at masking that I can fake strong.
And I allow my feelings to be known.
I no longer subscribe to the bullshit concepts around acceptable vs unacceptable social behaviour when it comes to myself and my autistic kin.
I know what ableism is.
I know what discrimination is.
I give myself permission to say “I’m really angry about this” or “I’m feeling really sad about this”.
Those same cycles we have lived through as autistic people can be stopped by us.
We can say No.
We don’t have to keep asking ourselves “What will I tell my children?” about a system that is broken and failing them.
Instead, we can tell our children we fought, we said No, we used our voice to tell the world who we are.
The good stuff will come.
The good people.
The good professionals, the good families, the good opportunities and the good life.
Whatever that looks like to you.
But it has to begin with the good fight. . . . Kristy Forbes inTune Pathways