Awareness month? Nah, not over here.
Mar 31, 2021
This morning I'm reminded of an appointment with an obstetrician in the public system seven years ago.
I was heavily pregnant with my last baby.
He was going over my subsequent pregnancies and deliveries and stopped upon something in the notes that was apparently worth dropping his jaw for.
"It says here that your last baby was diagnosed with autism..." he said.
"Yes", said I, already feeling fragile and vulnerable.
"Oh. My. GOD", he said with a pained expression. "Are you absolutely devastated?!"
I felt my brain rattle inside my head and I felt faint.
Was this really happening? Did he really ask me if I'm devastated with my beautiful, hilarious, cheeky, bouncing and gorgeous toddler?
I sat, stunned. Speechless.
"Right, looks like we'll need to get you in here for an ultrasound to monitor the size of your baby's head for the last few weeks. Let's go for a weekly check."
I made my way back to my car. Robotically.
I called my husband at work and I broke down.
I sobbed and sobbed and sobbed.
That was one of the many comments made about my children within the healthcare system.
I did not return after that day.
We have a responsibility to change this systemic oppression and trauma that is spewed out onto families by uneducated and misinformed professionals.
"Yeah, they all do that", "Will you have more babies after that? It's almost irresponsible", "You can definitely tell there's something wrong with her", "Aren't you worried about her future?", "She'll have to go into a home when she's older, won't she?"
This is the introduction, the initiation into neurodivergent family life for so many.
It is disempowering, disarming, traumatic and most of all, absolutely disconnecting.
When parents discover their children are autistic, many already feel that the thread that connects them to their beautiful babies is somehow thin, tattered or fragile.
The commentary that spills out, the presumptuous one-liners projecting into the future, has a devastating impact.
It has the potential to stop families from seeing, enjoying and trusting in their connection with their child and their intuition around their needs.
It encourages families to believe that their autistic child is so very different to them that only a professional with academic training could possibly have the answers to raising their child.
It often results in families seeing their child as a bundle of recurring problems to be solved, a project to be sculpted into some form of adapted neurotypical. And the flow-on effect is that that same family then base their own sense of self, their own value as parents around how accepted, how understood, how well their autistic child fits into society.
When the child continues to struggle to adapt; to appear non-autistic, to fit in and to be like their non-autistic peers, on goes the search for a new therapy, a new therapist, sometimes more researching.
There are times where this desperation peaks and morphs into a new category, where it branches into the diet, and biomedical approaches. Whilst dietary changes were necessary and biologically helpful in terms of health isn't necessarily an issue when the autistic child continues to struggle, some families will delve deeper and deeper until the approaches sought are so dangerous, and so unacceptable that the entire vision of family life and connection with their child is completely lost and the outcome of a non-autistic child takes priority.
This is due to the relentless projection of an impossibility for autistic children to be happy, to be whole, to be content just as they are; and to lead happy and fulfilling lives.
Imagine a world instead, where we as autistic adults celebrate and congratulate other adults who are identified as autistic.
A world where we support one another in neurodivergent identity and culture; familial connection and lifestyle.
Where we hold space for the pain, fear, and projections of another family and we have the ability to tell them "Yes, I hear you. I know your pain, I've been there too. And now I want you to know that this behaviour is not disordered, this way of playing is not non-functional, it is NORMAL AUTISTIC CULTURE. Your child is a wonderfully whole and complete AUTISTIC child."
The difference is profound.
It is transformative, and sometimes the difference between life and death.
For families. But mostly, for autistic children.
Autistic people are not neurotypical people with a dab of autism.
It is crucial to understand the difference, to build systems that support us via cultural sensitivity and respect.
It is crucial to seek out and to assist in the amplification of autistic voices in order to create the change that is so, so necessary so that we can thrive.
Had I been offered access to an autistic mentor, to a community based, an accessible team of autistic people to support me as a parent in understanding my child and guiding me through what was autistically "normal", those earlier years would have been significantly different.
We are here, outstretching our hands and hearts now as a community.
We care deeply about your children. They are our neurokin.
We, the autistic community are a soft place for your children to fall.
Please consider, please know that if your current supports for you, for your autistic child don't 'feel' right, if they leave you feeling inadequate or less than, if you feel you're failing, then it may be that your network is not respectful or sensitive toward autistic culture.
We are people. Not puzzles. Not problems. Not projects.
This April, I won't be lighting it up blue to make money that does not directly support families or autistic people. I will not be sporting offensive puzzle pieces, or talking about "awareness".
Change is what we need. Change from the ground up that is driven and directed by autistic experience.
So, please know that whilst I appreciate the well-intentioned drive for more understanding during April, it'll just be business as usual over here, but if you would like to donate, please consider autistic led organisations such as:
- Reframing Autism
- The Autistic Realm Australia - TARA
- Autistic Self Advocacy Network of Australia & New Zealand