Saturday, April 14, 2018
We are all different and that's ok, or Why you should disclose your child's diagnosis to them young
I am personally against hiding any confirmed diagnosis with the potential to affect a child's quality of life, especially if it causes cognitive impairments....and the reason will probably strike you as obvious once I'm done explaining.
When you have cognitive impairments, such as with executive function, you know. You know the way that people who are sober now will know they are drunk later. They won't know WHAT they know, but you know because you live in your brain and it is always part of your awareness.
If no explanation is given you think what you are experiencing IS EXPERIENCED BY EVERYONE. You may misunderstand fundamental concepts explained to you about how consciousness, concentration, awareness, attention, focus, discipline, effort and intentionality works if you aren't told that your experience is not the most commonly described experience.
You also begin to think that you are doing it wrong. That your character is flawed. That you are stupider than you actually are, or that you're missing something even when you aren't. It leads to a certain special sort of pervasive gaslighting, invalidation and minimisation that is extremely destructive to our sense of self.
This causes you to fail to have safe boundaries in place to protect your energy and your health - when you think your best effort is normal and it's actually you burning yourself up like a sun just to do what Joe Soap can do half asleep you are setting yourself up for a lot of stress related health disorders and mental health issues later in life. This is DANGEROUS.
Let's illustrate using an example: Curly hair.
If I wasn't told as a child that my curly hair was natural for me, that my granny had curly hair, that my curly hair is normal for me and isn't at all needed to be straightened of flattened or controlled but is instead beautiful and rich and lovely, I might have been very self conscious about how ...curly ... it is.
I mean I'd watch others combing their hair and begin to feel like I must be doing my hair wrong or something because I can't make it stay that flat and I'm doing EXACTLY the same thing that Susie Q does with her hair at the sleepover but I still look like a golliwog and she's all sleek. I might have thought I was BAD at doing my hair, or that my hair was UNTIDY. I might have started to feel guilty and insecure instead of angry and offended when someone told me my hair was messy.
Or another example: Freckles
A doctor (a resident from central africa who was practicing in our hospitals here and had only READ about freckles in textbooks) once asked me whether my sister's freckles were a hyperpigmentation disorder. If we'd never been raised to understand that ginger people just have freckles (because we do, duh!) we might have had a doctor go on a wild goose chase trying to pin down what the strange illness was that was causing our pigmentation errors....and we'd have walked around telling everyone we had a hyperpigmentation disorder which depending on the context could have caused people to treat us either as diseased pariahs, or possibly mentally ill persons who are delusional and hypochondriac for supposing that freckles are a disease..... And this would develop based on what we were told to expect (which shapes the way we perceive ourselves and our traits).
BUT Hiding a diagnosis from a child isn't empowering the way some people think. It doesn't help us NOT to be told we are different. That is like conspiciously not mentioning the fact that my hair is EXTREMELY red. I mean I can see myself in a mirror....why aren't we talking about this? Is it something bad? .......
You know I'm right guys. This is how we all work.
At best, It is trying to straighten their curly hair, or letting them silently wonder why their hair doesn't comb out right. It's letting them walk around thinking they have a hyperpigmentation disorder or that the fact they are the only red haired child in the family must mean they were adopted.....
At worst it is teaching them to associate feeling sick, dysfunctional, exhausted, overwhelmed, scared, sad, misunderstood and confused - with BEING NORMAL.
You REALLY don't want that. Being weird? I EMBRACE that shit. In the words of Brene Brown, what makes us vulnerable makes us beautiful.
My weird IS MY AWESOME. And that is a lesson my parents DID teach me, alongside the truth of why my mind doesn't work the way other people's minds do.
I was made very aware of the sad fact that because the world doesn't give a rat fuck about us on the institutional level, we may need medication to survive our childhoods and that's NOT OUR FAULT.
That's like our curly hair. Or our freckles. We're RARE. But we aren't a MISTAKE.
Understanding the sad but real fact that statictically neurodiverse people are a minority, that we require different things to be happy and those things are not commonly available and we may get looked at funny for needing them (BUT THAT IS NOT OUR FAULT) helped me.
I still developed a self esteem problem, but that was mainly because my school mates and fucked up teachers used to part the way in the halls to let me through like I was Moses at the red sea, and they hectored me calling me "Stinky" and told me "You must have held up a sieve when your mom threw you with shit" and "You look like stuck your head in period blood" and "You're the laziest child I've ever known". It wasn't because I was told I was different. It was because I was treated differently, and when I didn't know why I thought it was MY FAULT.
Let's face it having things like that said to you still hurts even when you know they are wrong. But at least you cant TALK to people about it in some way that makes sense because there is a vocabulary for you to describe your experience.
Give them a reason. Make sense of the cruelty of others. Tell them the truth. But remind them that DIFFERENT is not UGLY or BAD or WRONG.
It's just the reason there are more than one kind of flower, or all sorts of different birds or trees. It's why we have shoes that aren't one size fits all, and haircolours that arent all one colour, and why we have tall people and short people and why we have different kinds of music or why not everyone likes the same things you do or eats drinks their tea the same way.... because difference is EVERYWHERE when you look for it.
We just tend to forget that the rarerst and most special things in the world sometimes only bloom in the tops of the highest trees in the amazon, or grow in the depths of an ocean vent so hot that no other thing lives there. We are extremophiles. We need special environments, we need our hothouses....but it's because this culture is broken. Western civilisation doesn''t CARE if you need a specific diet like the orchid food for amazonian orchids. It doesn't CARE if you can only grow in places that have a temperature gradient that never varies under your hottest oven setting, or that you turn to jelly when you are brought up from the ocean depths because you cannot live at normal pressure.
It's NOT OUR FAULT.
AND THE WORLD NEEDS US.
Autistic people have a purposeful life too. They have a reason to exist in the ecosystem of earth. We are NOT an evolutionary fuckup. The ecosystem doesn't keep trash on the payroll guys. There's far too many of us for our geneset to be all bad things and no good.
Understanding that we might be like those extermophiles. that we need special environments and special diets and special accommodations to live helps me.
Understanding that extremophiles fulfill niche roles in the ecosystem helps me. They go where no other creature dares to go and grows in untenable conditions so that we may have from the crook of a tree canopy one of the most beautiful yet delicate flowers in the world, the Orchid.
So what if you are a hot house flower? The world should be privileged they didn't have to climb a tree in the amazon to see you!
We really just need to stop feeling so bad about being different, needing support, being sensitive....
Because you are beautiful. Like. All of us are friggin wandering miracles of nature that are fully formed breathing art. We have universes inside of us, and we carry libraries behind our eyes and recording studios behind our ears and we have a band in our mouth and we are extraordinary biomechanical machines that are puppets which dance for themselves by themselves.That's just NOT OUR FAULT.
It is our ARTISTRY.