‘Autistic’ is not synonymous with ‘distress’. Being Autistic does not cause meltdowns, anxiety, or trauma. Usually we are described by how we are “affected by autism” but what we are actually being affected by is the environments we are in and the lack of support we receive.
Meltdowns can occur in environments not designed for us and from being exposed to too much sensory information. Anxiety can occur from being repeatedly othered, excluded and rejected throughout our lives. Trauma occurs from being told constantly that everything about us is wrong, disordered and not good enough. These things are not caused because we are innately Autistic but because of what happens to us on a daily basis.
When Autistic children (mainly white cis boys) were initially observed almost 100 years ago, all that professionals recorded was distress, stemming from unmet needs. This has informed the criteria we still currently have and why so many Autistic people are not identified or do not receive support until they are in crisis.
Most of the traits listed in the DSM and ICD describe people displaying trauma responses and this is labelled as ‘autism’. Trauma and any possible co-occurring conditions are rarely considered as causes of the distress Autistic people experience. The criteria’s and narratives we have today have largely been based on assumptions, not on insight from Autistic people.
Our current systems and services have to change if we are to prevent Autistics from reaching crisis in the first place. To provide people with the necessary supports, adjustments and an understanding of who they are, rather than withholding these until people are struggling. To also uplift the voices of the Autistic community, which includes giving platforms and opportunities to those further marginalised, such as nonspeaking Autistics, those part of the LGBTQ+ community and ethnic minority groups.
So much of what has been defined as being Autistic is not reflective of our true experiences. We are a community who embody our own communication styles, our own expressions and many of us can feel deep joy and sensory bliss that the rest of the population cannot. This is not to dismiss anyone’s challenges as even with support and adjustments in place we can still be disabled, but this is because we are multifaceted human beings and not a list of symptoms.
And ultimately, what ‘Autistic’ is most synonymous with is ‘human’.
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