Reframing Autism Autistic Identity... 1024 X 576px (23)

Written by Ginny Grant

CW: Pathologising language, mental illness

‘Overall Ms Grant’s presentation was consistent with an individual who has clear symptoms of ASD. […] Her eye contact is either missing or overly intense. […] Her communication is blunt and frank. She has been able to mask many of her symptoms by observing what are normal, acceptable behaviours and adapting to her surroundings. […] In my opinion she meets the criteria for Autism Spectrum Disorder according to the DSM-5.’

I sit at my kitchen table holding a letter – the clinician’s report that confirms that my various strengths, passions, differences, and difficulties all boil down to ‘Autism Spectrum Disorder’.

This is a surreal moment: at thirty-nine years of age, I have lived out almost half my life expectancy without understanding an integral part of my being.

It is also an unsettling thing to find yourself described in such a detailed, pathologised manner, although I do understand that this is the medical community’s convention. But honestly, I’m puzzled by some of the descriptions. I’m proud to be ‘blunt and frank’ – essentially straightforward, yes? – sounds like a great attribute to me. The eye contact thing gnaws at me too. ‘Missing or overly intense’? Jeez, you can’t win.

As my eyes skip over the clinician’s various remarks, there are echoes in my mind of comments that have been made to me, about me, many times over the years. Comments that have contributed to my habit, now deeply ingrained, of ‘masking [my] symptoms’ and ‘adapting to [my] surroundings’.

It is well known that this masking or camouflaging can have a damaging impact on an Autistic person’s wellbeing and contribute to Autistic burnout and mental illness.

Weeks earlier, I’d sat in the waiting area of a clinic specialising in adult assessment of neurodevelopmental differences, wading my way through psychometric screeners. What a mindbender they were! Next, I was ushered into a practice room for a two-hour interview with a clinical psychologist known for her expertise in Autism assessment. Would she see the Autistic traits I saw in myself? Or would she think I was wasting time and money in pursuing an assessment? Well, apparently not.

I felt extremely nervous in that interview, but the clinician was warm and reassuring. She explained that really, she just wanted to have a conversation. I noted she used identity-first language (i.e., ‘I am Autistic’ or ‘an Autistic person’ as opposed to ‘I have Autism’ or ‘a person with Autism’) – favoured by an overwhelming majority of Autistics – which to me was a welcome mark of respect towards the Autistic community. I knew she was making an effort, as identity-first language would have been in direct opposition to the person-first language that is usually drummed into allied health students in their studies.

To my surprise also, rather than focus on the things I didn’t like or struggled with, the clinician focused on the things I liked and excelled at. She honed in on my knack of weaving words together as a writer. My focus on minute detail within text as a book editor. My love of and aptitude for numerous foreign languages. My penchant for patterns, both textual and visual. My rather profound memory, ready to dredge up particles of the past at any moment. My logical, rational approach to life. Oh, and my interests – so many of them over the years – which apparently are considerably more distinctive than the neuromajority.

After a long discussion, the clinician shuffled some papers – those psychometric screeners I’d grappled with earlier – mumbling yes, yes and nodding at what she saw. She revealed that I had scored highly on those screeners – in other words, I nailed them, in the most Autistic of ways! The clinician told me then that my life experiences were very much in parallel with those typically experienced by Autistic people. And my medley of mental health diagnoses – major anxiety and depression, OCD, and an atypical eating disorder – were exceptionally common co-occurring conditions among Autistics, and that exact triad too.

The clinician concluded the interview with words to the effect of, ‘You have so many strengths – strengths that come from being Autistic. The world needs people like you, Virginia. The world needs Autistic people.’ Huzzah!

And that was that. I paid and left the clinic with my dear Autistic friend G, who had kindly driven me across the city to ensure I made it to my appointment on time, knowing that I find navigating and shopping centre car parks extremely nerve-racking. Only a few months earlier, G and I had become friends unexpectedly, sharing similar perspectives, a deep love of memes, and now our Autistic neurology, too. G and I chuckled for a long time afterwards at how, on the way out of the practice, she had told the clinician bluntly, frankly that she had diagnosed me first. It seemed just about anyone could see my Autism – well, other Autistics could see it, anyway.

After reading the written report, I let the pages drop to the table, breathing a long sigh of relief. I finally had a word – an explanation – for my thoughts, my feelings, my perceptions. And now I had written proof of it. I was exhausted.

I took the next few months for myself. I just wanted to let the diagnosis sink in. For a long time afterwards, I had flashes in my mind of experiences – from my childhood, from my adulthood, some fond memories, others rattling – now perceiving them through the lens of a self-aware Autistic person.

It is an uncanny thing to view your life through an entirely new lens, and that of a neurological developmental difference. Although it has been confronting to return to some of those memories, I can finally make more sense of them, fit them into neater boxes.

Slowly, over the next 12 months, I began disclosing the discovery of my Autistic neurology to friends and family members when the opportunity arose and it felt natural, comfortable. I decided to be completely upfront about my Autistic identity and that people could take me or leave me just as I am.

Eventually I found the courage to write two pieces for this blog, in which I presented my experiences of motherhood and the eating disorder in an Autistic light, that I shared on my personal social media channels. No one expressed great surprise. Some sent warm, supportive messages. Others were silent, perhaps unsure of the best response and clearly deciding that no response was the best option. One person unfriended me …

Although some friendships seem to have dissipated since sharing my diagnosis, I have formed new friendships too, with other Autistics, both online and in real life. These are people with whom I found I had an almost immediate, intuitive connection. We understand each other effortlessly. And regularly, when I feel the need for connection, I’ll reach out to these friends in the Autistic community, often in ways that may seem unorthodox to the neuromajority, because we Autistics have no time for small talk – or perhaps I’ll just send a meme and wait for their laughing emoji.

I stash the report in a folder. I decide I shall not dwell on its contents any longer. I wanted confirmation of what I thought to be true of myself, my authentic self, and I got the answer I was seeking. I now understand myself better, and others have a framework by which to understand me better too – if they choose to do so. I embrace my authentic Autistic identity with pride. I have found my people – the Autistic community and its allies. I am happy.

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The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.

We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.

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