A Lost Girl's Journey: Discovering I Am Autistic in Adulthood
A special thanks to the Center for Optimal Brain Integration for inviting me to write about my story and originally publishing this post on their website here!
“It’s been validating to learn that I’m autistic,” I said to my therapist.
“Can I offer a way to reframe that?”
I knew what was coming. “Sure!”
Commence a well-intentioned suggestion of thinking of myself as having autism. I wasn’t upset, knowing my therapist’s training had all made one thing unarguably clear: always use person-first language.
“No,” I replied. “But can I ask you to look into identity-first language in the disabled and autistic communities?” His face was surprised but warm, and he jotted it down with a nod. “It’s the preference of the vast majority of the communities that we not use person-first language, but it’s what we’ve been trained entirely to do.”
(Functioning labels are another no-no.)
Discovery and Validation
It was in late 2019 that I read a Facebook post that caused me to wonder. In the post, The Pierced Protagonist writes,
“Lost Girls, in a nutshell, are autistic girls who fail to fit the male stereotype of autism, so go through life largely undiagnosed.”
Many of them don’t even realise themselves until they end up having an autistic child of their own.
Autistic girls are often quiet, studious little girls.
They read well, speak well, write well.
They love animals and make a significant effort with their peers.
They meet, and often exceed, developmental milestones.
So they pass under the radar.
But, the problem with these girls is that they evade discovery by engaging in a behaviour known as ‘masking’.”
At this point, I had not yet learned about the preference for identity-first language among the disabled and autistic communities. I knew next-to-nothing except that the post had resonated with me - to my core. I had already started following bloggers and advocates with different lived experience than me, specifically in regards to race. Centering and learning from Black, Brown, Indigenous, and other People of Color was essential to me. Between interest and intersectionality, I sought out further perspectives from non-dominant groups: disabled, neurodiverent, and autistic folks; transgender, nonbinary, and queer folks. I read account after account of neurodivergent and autistic people whose experiences validated my life in an incredible way.
For the first time, I didn’t feel “crazy,” “bad,” or any of the other negative beliefs I’d internalized about myself. The image below, from a recent Neuroclastic post, resonated with me deeply. In the accompanying post, they write “Growing up #autistic, maybe especially for those not diagnosed or self-identified until adulthood, is a life of constantly being sent the message that “you're doing it wrong.”
Doing what wrong? Just about everything. You're too loud, or too quiet. Your posture is wrong. You express joy with too much enthusiasm. You have an “attitude” or are “talking back” if you try to understand. You're too “sensitive.”
Gender stereotypes, which most autistic people reject, are used to shame autistic children: man up, drama queen, grow a pair, that's not lady-like, etc.
#Masking happens as a survival tactic. Autistic people are left with an eternal struggle to find themselves under layers and layers of masks.”
Seeking a Diagnosis
I sought a formal diagnosis beginning in February 2020 when I asked my new primary care doctor for a referral to receive an evaluation. I had been with the doctor and nurse for no more than ten minutes.
"You don't seem autistic," the nurse confidently reported to me.
The doctor asked why I thought I was autistic, then suggested that none of those experiences could be related to autism because...I could make eye contact.
I insisted on the referral, which she did give to me for a behavioral health evaluation which would include autism. COVID lengthened the process; some of the evaluation took place online via video chat and several people close to me filled out questionnaires about my characteristics and their interactions/observations of me. I had an in-person visit with the evaluator, who had confirmed for me that she had experience diagnosing adult women with autism who present outside of the standard DSM criteria.
About a month after my visit, she reported my results to me: I can't diagnose you because you don't meet enough of the DSM criteria. But if you come back in ten to twenty years when the DSM is updated, I could probably diagnose you.
What I did get diagnosed with... Anxiety, depression. and OCD: all diagnoses that are often assigned to autistic women and non-men instead of autism.
The Social Model of Disability and Self-Diagnosis
This article helps identify and compare the differences between the social and medical models of disability, and is where the above image originates from. This short video (less than three minutes!) also helps build shared understanding about the social model of disability.
The social model of disability aligns with the idea of self-diagnosis, identifying the vast range of barriers that exist and can impede a diagnosis. I have a lot of privilege that helped me seek a diagnosis: insurance, a doctor who didn't have so much doubt that she declined my request for a referral, spoken communication, assurance that I would not be discriminated against due my race, body size, or ability.
The autistic and disabled communities vastly support self-diagnosis as valid due to the number of barriers that can come between a person and receiving a diagnosis.
How I Am A Better Self-Advocate
Being able to identify the needs that I have to be able to function well within my environments. At work, this includes pursuing a 504 plan with a letter from my therapist identifying my sensory need of lower lighting options. In my online Masters program, when an instructor asked for feedback on how to improve, this looked like being able to identify my barriers and potential solutions: asking to identify an engagement/speaking protocol, asking that she identify for us in advance what we can expect in terms of introductions and the structure of the classtime, and having consistent breakout groups from week to week.
Within friendships, this looks like having transparency that my auditory processing skills and memory are not strengths. This looks like communicating that I strongly prefer not to be touched or hugged - and that I can offer support in these ways to a limited number of people in certain contexts, such as a friend having a panic attack.
Some of these may seem like they are things that would benefit anyone or needs that neurotypical people have, and this is often true. Often, when we ensure the needs of a non-dominant group are met, we ensure that everyone's needs are met.
My Call to Action
We must value the lives of all in our community. Including, and perhaps most especially, those who have been historically marginalized and oppressed. Black, Brown, Indigenous, and other People of Color. Disabled people. LGBTQIA+ people. Neurodivergent people.
When we are part of a dominant group, it is our responsibility to listen to, defer to, and extend absolute beliefs to the perspectives and experiences of others.
Start by expanding the content you consume. Whose perspectives and experiences are represented? What gaps exist? I have started a list of Facebook pages, groups, and associated Instagram accounts across categories of historically marginalized groups, including autistic-led pages.
Notice your responses as you expand. Do you have doubt or disbelief? Are preconceived notions reinforced? Challenged?
Take action. How and where can you disrupt harmful narratives? Policies? Practices? In your mind - towards yourself? Others?
Affirm your life. Affirm other’s lives. Unconditionally.
Neuroclastic had a follow-up post that fit perfectly in this narrative:
“Today, we are posting what phrases and words are more conducive to a life lived with authenticity and emotional resilience.
Yes, there will always be people who will reject what is different, who believe children should be seen and not heard, who think that “normal” means superior-- and that is why we will always have traumatized people trying to push the status quo into a more accepting and inclusive way of existing.
Accommodating for #autistics, #ADHDers, and all marginalized groups makes the world a safer, healthier, more vibrant place for ALL people. All people would benefit from an existence that is more concerned with what works and what is True over what is “popular” or “normal.”
This is what acceptance looks like.
Special thanks to the talented @DissentByDesign for this beautiful art.”