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Autism is my Identity and my Culture

Uncategorized Sep 06, 2020

What I want you to know first and foremost is that I am autistic.

I am an autistic person married to another autistic person, and we have created four perfectly whole autistic children.

We are not broken versions of non autistic people.

We are not second rate human beings.

We are autistic people.

We are not better or worse for it.

We are autistic.

We are not people with autism. We are not ASD people. We are not "on the spectrum".

We are autistic.

We choose.

Autism is my identity and my culture; not my medical disorder or diagnosis.

Whilst in this space, I will expect and assume that you will be culturally respectful.

When you ask me to have a more "balanced" approach to autism, you are asking me to accept your trivialisation of my worth as an autistic person based on your struggles and not mine.

When you tell me I dismiss the very real struggles associated with autism, your ignorance is highlighted in that you believe my autistic identity is yours to decide and to dictate.

When you tell me I dismiss the very real struggles associated with autism, you overlook the reality of my struggles being created by those who overlook my identity and culture.

When you tell me I dismiss the very real struggles associated with autism, I know you're not paying attention. You're seeing and hearing only what you're able to, based on your own experience.

You're projecting your experience into my reality.

That's your story; not mine.

When you expect me to make you more comfortable, to alleviate your struggle as a non autistic person; you are adding to the very real struggles associated with autism.

It is never the responsibility of the oppressed to educate the oppressor.

When you are uncomfortable or offended by my writing, my speaking, my being, this is good.

Discomfort is opportunity.

It's both my opportunity and your opportunity to learn; to make choices.

Will I reject this person's experience that is NOT about me, that is completely their own, and not for me to correct, fix and change?

Or will I find ways to follow my discomfort and learn more?

To eliminate, suppress or shutdown autistic ‘behaviour’ is to eliminate, suppress or shutdown autistic communication, identity and culture.

To believe or to make the assumption that replacing our behaviour with ‘functional communication’ (based on non autistic communication) is better than what we already have is ableist and grossly presumptuous.

To initiate families whose children are identified autistic with information that is fear mongering, centred on panic and distress embedded in ignorant and elusive future outcomes; to perpetuate the myth of an urgent and small ‘window of opportunity’ is abusive.

It tells families that their autistic children are no good. That their every move, that their PLAY should be pathologised and intevervened in, that families can never truly relax and enjoy their children.

It leads families to believe that they must centre their lives around finding the one miracle therapy, the one answer; it results in families truly believing they’re inadequate, that they’re failing their autistic children, all because their children remain autistic no matter what.

It keeps autistic people from their culture, their identity, their peers, their kin, their place in the world.

The elimination of autistic behaviour encourages us to mask all our lives, it doesn’t make us non autistic.

The discouraging of autistic expression robs our non speaking autistic kin of communication completely.

It creates a narrative of shame, fear and panic that is passed down through bloodlines over generations, resulting in intergenerational trauma.

It results in unidentified autistic people seeking respite and reprieve in the first thing that eases the pain, grief, trauma and isolation of the unspoken knowledge that we are unacceptable.

Alcoholism, drug addiction, sex addiction, eating disorders, hoarding, anything that we are able to centre our focus on, anything that we can exercise the illusion of control over, all whilst slowly killing ourselves.

Non speaking autistic children spoken about in their presence due to the assumption of their intelligence being congruent with how their move their bodies, the sounds they make, their ‘behaviour’.

In professional practice, where one is exposed to the voices of the very community they purport to be supporting and ignore those voices, continuing to move forward with an agenda to normalise rather than actualise autistic people, that is unethical.

It is an unapologetic contribution to oppression.

It is a direct contribution to family distress and panic, disconnected parents from their autistic children and misunderstood, unsupported autistic people.

It is a direct contribution to the higher rates of poor mental health outcomes, chronic long term illness and co occurring conditions and the suicide rates amongst our community.

We don’t cultivate a culture of acceptance by continuing the drive for conformity, by refusing basic human rights to be accommodated and supported in schools and workplaces, and by calling us disordered.

We have the right to decide who we are and to be celebrated.

Families have the right to be supported to understand their children via access to their children’s neurokin in order to understand and accept our normal.

Families need to know that there isn’t an urgency for early intervention just because of the word ‘autism’.

Rather, just as we would any other human being; we can enjoy and embrace our autistic children and learn to tune in, intuitively, to observe and understand behaviour as communication and important clues into support needs.

We can support our children when their needs are identified throughout their lives.

We can move forward and treat autistic people with the respect and autonomy they have the right to.

Please, learn from us.

Educate yourself by listening to our lived experience and learn how to be culturally respectful.
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Kristy Forbes
inTune Pathways

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