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© 2023 by inTune Pathways 

ABN 78 435 698 441

I am not a disorder

December 30, 2018

I prioritise and value having a social media feed that reflects a positive autistic identity, however there are times where I also see the importance in sharing the challenges associated with being on the autism spectrum.

So here's a piece on REAL AUTISM.

And in my true style, it is LONG.

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Often when I speak about the neurodiversity movement,

I see and hear people respond to positive autistic identity with

“I’m sorry, but glossing over the disorder is not okay. This is a disorder and the neurodiversity movement only speaks for high functioning autistics”.

This is totally inaccurate.

Many of us who advocate for the neurodiversity movement address the challenges associated with raising children with significant support needs.

We address many behaviours considered ‘non functional’ and interpret or ‘translate’ them because we understand them as a natural, organic, innate physiological functions to assist in the regulation of the autistic brain.

I personally, absolutely understand the challenges associated with parenting children who are clinically labelled ‘low functioning’.

However, I do not use functioning labels to describe my children or any other human being.

They are closed minded, degrading and derogatory and ironically, only TWO adjectives that sit at each end of the illusion of a linear, sliding scale representation of autism that absolutely boxes my children into a completely misunderstood and grossly underestimated and/or overestimated potential for capacity.

They do not measure, nor are they indicative of intelligence.

They do not serve to pay merit to any human being.

In the neurodiversity movement, autism is more than a diagnosis.

It surpasses the medical, pathological model.

It is how I see, perceive, process, interpret and understand the world.

It is an identity.

A positive, celebrated identity.

My challenges, my children’s challenges, no matter which functioning labels we apparently fall under, are more often than not, created by non acceptance and/or comorbid health challenges.

The behaviours associated with self harm, depression, anxiety, aggression are often physical manifestations or by-products of internalised processes that whilst those on the outside looking in struggle to understand, our autistic children do too.

Meeting a child who is struggling, with MORE expectations, demands, rigidity and assumptions based on our own experiences will often do more harm than good.

Autistic people are NOT neurotypical people with an add on of autism that can be eradicated.

We are whole, complete people who are innately autistic.

Acceptance is key.

Speaking from my own experience, spending a lifetime knowing I was different and being okay with my own difference, but knowing others weren’t..

Drove me to absolute despair.

All the worst outcomes.

I was fortunate to survive my teen years.

I’m not being dramatic.

As an adult, diagnosed as autistic at 33, my life completely changed.

The grief. The relief.

Grieving a life that I had not lived as myself. A life I believed I was a broken version of everyone else.

The relief of knowing I was not.

And today, I wake with a constant stream, a social and cultural bombardment of that ugly word..

Disorder.

When a child with Cerebral Palsy stands on their feet and feels elated at what they are achieving and feel pride in who they are..

I don’t see people responding with “Yeah, but you’re still disabled”.

When families with positive lifestyles and experiences of their children who are, again, classified as ‘low functioning’ share stories, pictures, show pride in their incredible children..

I see them consistently met with..

“Why aren’t you showing REAL autism? Why aren’t you showing the destruction, the sleepless nights, the faecal smearing..?”

WHY?

Why is it so necessary to degrade our children in such ways?

Who does it help?

How do we think this language, these degrading images and graphic and visual descriptions impact on our children’s sense of self?

How valued do we consider they might feel?

I wake up and I cannot avoid (and I try to actively avoid) a constant bombardment of disorder messaging around who I am, who my children are, who my friends are..

Who the people I love are.

A string of causes and cures, correlations that seek to blame parents, foods, medications..

As though we are tragedies, atrocities.

And here we are, telling the world who we are..

And so many respond with..

“This isn’t real autism. Real autism is a disorder. You look fine”.

I feel dismissed, degraded, misunderstood, invalidated, undervalued.

Those of us who are labelled ‘high functioning’ have many of the same behaviours that our autistic brothers and sisters labelled ‘low functioning’ have.

We’ve learnt how to hide them and keep them behind closed doors.

And it has caused us to suffer.

Suppressing those important physiological functions that assist our brain functioning harms us.

If only the world knew..

How truly beautiful and brilliant we are.
If only the world knew..

How worthless, invalid and insignificant autistics feel when all we read, hear and see is talk of all the ways in which we are wrong.

Please, suspend your disbelief and listen.

We are so much more than a misunderstood, pathologised medical model.

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