I am my autistic children’s peer as well as their Mum
For the past number of months, I have been part of the Reframing Autism peer group, which brings the neurodiversity movement to non-autistic parents of autistic children.
It’s been a unique experience, through which I’ve explored my relationship with my own children, and I’ve met amazing autistic advocates who want to share the joy of parenting autistic children with non-autistic parents.
Special kind of knowledge
As an autistic Mumma of autistic boys, I feel I have a special kind of knowledge about my boys that non-autistic Mummas and Pappas probably don’t have. I understand what it feels like to have meltdowns and why you might have one.
I know what it is to have different sensory reactions than the majority of people, and how wonderful and painful sensory differences can be. I know how important stimming* is, and what it does for my body and my mind. I empathise with how crippling social anxiety can be.
I have intimate experience of how uplifting autistic passions can be, and I’ve felt how isolating having such passions pathologized can be. In essence, I am my autistic children’s peer as well as their Mum: I have a shared lived experience which gives me an insight into my boys that is both helpful and exceptional.
What’s been wonderful about the Reframing Autism group, is that I have been given the opportunity to share that insight with parents who might not otherwise hear an autistic point of view.
Often, the parents who come to Reframing Autism have only recently received an autism diagnosis for their child, but are already questioning the deficits-based language and stereotypes that so often prejudice our perception of autism.
Without fail, all our parents come with the best intentions of their children as absolutely paramount.
It’s not always easy being autistic: I find particular noises feel like a hammer is pummeling my brain, and that particular smells make me gag. I am phobic of balloons and I think more than four people in a room at once is an unmanageable crowd.
So, when my autistic children tell me that they’re overwhelmed, or scared, or that the sensory anxiety is urging them to meltdown, I really, truly get what they’re saying.
I know that the response ‘calm down’ won’t help; I know that they’re not attention-seeking and that they don’t need to ‘toughen up’ or ‘push through’. It’s that knowledge that I want to give other non-autistic parents.
The other day I had the pleasure of meeting a delightful young autistic lady whose Mumma wanted her to stop stimming so often to help her fit into preschool by looking more ‘normal’.
When I explained to this Mumma what her daughter’s stimming might provide her (sensory and emotional regulation, or simple pleasure), and shared with her the experiences of my own and my children’s stimming, she was able to see that our job as parents is to change the perceptions of those around her daughter, not change her daughter. That’s pretty powerful.
Through Reframing Autism, I get to meet lots of parents and get that message out to non-autistic parents early.
It’s very satisfying to know that our little group might just be making life better for some autistic children out there who deserve to be celebrated as gorgeously unique just as they are.
It’s awesome to think that through our group, some autistic children won’t grow up worrying that they’re broken or wrong, and that they will be accepted and loved, autism and all.
About Reframing Autism
Reframing Autism is a group led by autistic adults to provide information and support to non-autistic parents of young autistic children.
The group is based in Sydney’s Inner West and is funded through a Team Up grant.
Find out more
If you want to learn more about peer support, email us at firstname.lastname@example.org or call us on 1800 424 065.
See our peer support resources to find out more about peer support.
* Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner.
This blog writer wishes to remain anonymous. Photo used is a stock image