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You might be doing it wrong.

autism parenting Feb 04, 2021

Many parents and educators will often witness behaviour from neurodivergent people and find it baffling or confusing because they’re unable to connect it to a particular and recent event.


Being autistic means my processing is on a different timeline.


Often I’ll be reminded of something via sensory association that might be upsetting, or joyous.


It might be a sound, smell, visual, a tangible or tactile feeling or a taste.


It also often extends beyond our delineated five senses, as neurodivergent people often experience extra sensory perception or even synaesthesia; an overlapping of sensory perception and association (sounds have colours, days of the week have smells etc).


At times, I may have complied with a request or instruction or answered a question that my demand avoidant brain translated as a demand and therefore a threat. This means my neurobiology will organically and intuitively seek to take back control and autonomy in a variety of ways, all of which would be considered negative and/or positive; acceptable and unacceptable, good or bad.


For beings who experience the world in so many ways that cannot be translated due to a lack of language to express them; existing inside of a society that is insistent on duality, and extremely binary thinking is always a challenge.


My behaviour is either good or bad. But never understood as communication or an externalised expression of my private, untranslated inner life.


I want to provide an example of a family experience recently that may help to highlight moving outside of binary translation of behaviour.


A member of my immediate family requested a bath on waking yesterday morning.
“Yes my darling, of course you can have a bath” I responded.


They smiled and expressed joy in their expansive communicative way, which extends beyond verbal communication (they are non speaking).


I was running a big, warm bubble bath when all of a sudden, my family member burst into a powerful and almighty expression of inner experience (meltdown).


There was screaming, writhing, self harming and as I was in the same immediate space, I was also hurt.


I was baffled.


It hurt my heart as I felt powerless.


“Sweetheart”, I said in a soft, quiet, soothing voice, “What has happened?”.


It made things worse.


I was told to go away.


That was painful and difficult but I understood as an autistic person myself, our need for solitude.


I poured a coffee and sat with the discomfort and sadness in my heart and body.


The sound stopped.


I returned and the experience picked up, even more intensified.


I didn’t understand, and yet I knew there was a very valid reason. A challenge. A fear perhaps or panic. Anger or frustration.


I noticed a little hand attempting to splash the water outside the bath whilst the other hand attempted to stop it; accompanied by rage and panic.


And then I understood.


The previous morning, I was tired. I was grumpy. I was impatient. I was intolerant. I was dysregulated and I was anxious.


I was controlling.


My family member’s most favourite and recent stim to splash water all about the bathroom had caused a lengthy and impressive stream of water to run from the bathroom all the way to the front door.


I was annoyed.


I expressed how unhappy I was.


“This is NOT COOL. I just want to have a coffee! Why?! Stop the splashing!”


And I removed them from the bathroom promptly.


At the time, there was laughter. Extreme, falling over oneself laughter.


This is not to be mistaken for contempt or disrespect.


For many neurodivergence people, emotional expression cannot be understood concretely.


I laugh when I am anxious, shocked and nervous.


My family member was anxious and upset for being reprimanded.


But it was more than that.


They were upset for having their regulation, their stimming prevented.


And now, in this moment I could see it.


For those of us who experience severe dyspraxia, which is often misunderstood and interpreted as “severe autism”, our bodies do not always follow the intention of our mind.


I could see that they were unable to prevent their little hand from stimming and the panic and display of distress was about not being allowed to move in a way that they needed to.


“Ohh sweetheart”, I said, “I am so sorry. Yesterday I was not reasonable and I didn’t think about how important this is for you.”


The crying stopped.


I plugged up the doorway with towels and covered the basin.


“Splash away!” I said, as I demonstrated with my body by joining in the splashing and laughing.


And all returned to joy.


This demonstrates a number of important points in understanding autism and neurodivergence.


We are not mildly or severely autistic.


We are autistic with co-occurring conditions such as dyspraxia, apraxia, OCD, anxiety, demand avoidance, autoimmune disease, chronic mental health conditions, etc.


We are on a different timeline both developmentally and cognitively, but we are not delayed or “slow”. This only applies in comparison to neuronormative standards and is discriminatory and ableist.


Our thinking, doing and being is never without reason and method. Exploration, suspension of disbelief and patience is paramount in understanding our behaviour.


Compliance and normalisation therapies are traumatic and abusive as they are driven by complete dismissal of autistic neurobiology, identity and culture and seek to correct our organic ways to have us assimilate to neuronormative ways.


This is discriminatory and ableist.


Neurodivergence life must be family centred. Each one of us must take responsibility for our own discomfort and projection of our fears and trauma associated with our childrens’ behaviour.


Our energy, our behaviour and our coping and regulation has a significant impact and influence on our autistic childrens’ wellbeing and sense of self.


Always seek autistic input.


Nothing about us without us.


If you are interpreting neurodivergent behaviour in comparison to your own logic, rationale and experience as an allistic or neurotypical person, you’re doing it wrong.

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Image: Ketut Subiyanto

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