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Raising ourselves and our children in neurodivergent culture

Feb 04, 2022
Autistic family culture; neurodivergent family culture is whatever works for you in alignment with your neurobiology collectively as a unit.
Sounds impossible sometimes, right? Feels impossible when our needs, our sensory profiles, our neurotypes may be conflicting. So we take it one small moment at a time.
Our needs change as neurodivergent people, they fluctuate from moment to moment. They’re impacted by so many varying factors and when we throw a beautiful, eclectic bunch of folks together all with competing interests and supports; it’s a challenge!
The most important beginning point is radical acceptance. No more comparison.
Comparison is what gets us to the point of self loathing, internalised ableism, feelings of failure and inadequacy.
We are NOT neuronormative. We ARE neurodivergent.
Courageous conversations about what our lives look like bring us together. They are the starting point for others to know and feel that they’re not alone.
Knowing that there are thousands of us out here raising children in very different ways, is an enormous comfort to many who are still fighting to live inside of a culture that isn’t meant for them, while fighting what is, hanging on for dear life to the imposed dream of what is not meant for them.
Those folks who are fighting for their children to use their screens less, eat at the table, sleep a solid 9 hours, eat a variety of fruit and vegetables, communicate and regulate in neuronormative ways, play with their toys in neuronormative ways, attend school seven days per week..
Because this is what is taught to us as families.
And don’t get me wrong, those goals above are not necessarily wrong or bad, if they’re achievable, realistic and not causing incredible tension and pain within our families.
But it’s also important to know when the goals, hopes and dreams we are holding onto are not working for us.
It’s okay for us to struggle. It’s okay for our children to struggle. We are human, we learn and grow through struggle.
It is NOT okay to be suffering, long term. There is a difference between struggling with something and learning at the same time, and potentially crossing the line over into trauma as the result of long term suffering.
It is not okay for us to be fighting what is, every second of every minute of every hour of every day.
That is not a life.
If we are consistently attempting to create a life built on a foundation of “normal”, of neuronormativity, of the majority consensus, we are going to experience pain. Incredible pain.
I’ve worked with families who are too afraid to leave their homes due to the feedback, the criticism, the nature of neuromajority opinion and judgements around child behaviour.
If our children become mute when a stranger speaks to them, and that stranger behaves as though our child is rude, it’s a great opportunity for us to respond with “My child is autistic. They shut down in particular environments of stress due to severe anxiety.”
If a family member remarks that our children should learnt to sit at the table with family to eat, it’s an opportunity for us to say “Their anxiety and sensory sensitivities prevent them from being able to eat in such an environment, they require space when they eat so that they’re not experiencing pain from sensory input such as sounds from others at the table. I’d prefer they be nourished than appeasing others for now.”
It’s our right to say No, to leave, to ask others to leave, and if we’re not quite there yet, that’s okay too.
Coming home to who we are, and the lives that support us and help us to thrive more often than not requires a multitude of undoings. Undoing past beliefs, values, principles, relationships, understandings and knowledge.
It means letting go, sometimes of things that have brought us incredible safety and comfort in the past but no longer serve us today.
It means acceptance. Radical acceptance.
Accepting that my neurodivergent culture while sharing similarities with other neurodivergent folks will not be entirely the same.
There are factors to consider, such as privilege.
I am a white woman. I have the privilege of encouraging and allowing my neurodivergent children to be their authentic selves, to stim, to retreat, to self advocate.
Not all neurodivergent folks have the luxury of doing this. Their children may be harmed for publicly being themselves because of other minoritised factors such as the colour of their skin.
We don’t have the right, the experience or the insight to tell other neurodivergent folks how to be neurodivergent. How to behave, how to identify, how to anything.
We love, encourage and support ourselves, and one another right where we are. We meet one another with an open curiosity, asking courageous questions and learning from others.
Neurodivergent identity and culture is varied and our lives will look different according to our identities: autism, ADHD, PDA, tourettes, PTSD, and so much more. Our culture is how we live with those identities.
Is there something you’ve been hanging onto that has caused you, and your family long term suffering?
Many families will be terrified to let such things go, because those goals have been set by therapists, allied health professionals, educators, etc and the guilt and self doubt we internalise as a result is very real and very confusing.
I spent many a year self doubting. If a professional tells me this is right and good for my child, then it should be, right?
Not necessarily.
We know, we feel, we see when our children and when we, ourselves are happy. We know ourselves and our children best. Someone else’s qualification does not take precedence over knowing ourselves; being who we are.
Support and therapies should always be collaborative. We, the families bring ourselves into a partnership with our supporters, not a dictatorship. We bring the challenges and the professional offers their skills so that we work together. But we can say no. We can ask for something else. We can change our mind.
And those challenges we bring are not to be confused with ourselves and our children being neurodivergent. Children who do not play or communicate or socialise in neuronormative ways should not be considered challenges.
Improving our quality of life based on what WE choose are the foundations for support.
Working out and understanding our family culture takes time. It took me 33 years of living within the bounds of neuronormative culture, which was incredibly limiting to me as an autistic person. I was never offered the opportunity to explore my neurodivergent identity and so I lived as a moulded version of everyone else instead.
This caused me to be extremely unwell. Confused. Chronically ill. Depressed and anxious. And to project the fear of those experiences onto my children as a result.
It took me 33 years. It will take me the rest of my life to undo, to explore, to come home to who I was always supposed to be.
Once you’re home, you’re really home. And there’s no going back. Going back is not as simple as just masking. It’s returning to poor mental health, anxiety, depression, unhealthy relationships, pain pain pain.
Letting go, reassessing, being true to oneself is terrifying. And yet so rewarding and freeing.
Are you interested in learning about how to communicate respectfully and collaboratively with your demand avoidant loved one?
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