The Gap Between “Diagnosable Autism” and a Lifetime of Unidentified Autism
I’m a late-identified autistic woman and therapist who works with late-identified autistic individuals.
The clients who come to me are frequently self-identified and unsure about what aspects of themselves are autistic.
One of the first topics we cover in therapy together are the primary ways that autism manifests in our senses, body, feelings, and thoughts. I have a list of “symptoms” that I’ve synthesized from all of the books, courses, education, training, personal experiences, and time spent working with autistic clients.
As I’ve reviewed this list item by item with my late-identified clients, I’ve noticed an interesting pattern.
Frequently when I ask if they experience a particular symptom, they’ll respond “Not really, I’ve learned to …”
After an entire lifetime as an unidentified autistic person, many of my clients have learned unique strategies to work with their neurodivergent minds.
For example, a client of mine always uses subtitles when she watches movies. One of the items on my symptoms list is “difficulty discerning human voices when watching television or movies.” When I asked if she experienced this, she said, “Not really because I always use subtitles.” When we investigated further, she realized that the reason she naturally gravitated toward subtitles was because it was often difficult to hear.
This type of response is actually very similar to my initial inquiry into autism. When I took tests related to autism, I also had a difficult time knowing how to respond because I had learned how to adapt to my neurodivergent mind.
For example, one of the questions on an autism questionnaire asks if a person struggles to make eye contact. When I was originally asked that, I said no. As I thought about it over time though, I realized my answer was not that simple. I had been taught by my mother how to make appropriate eye contact in a conversation. My mother also modeled this behavior and would correct me when I wasn’t making enough eye contact. I’m now fabulous at eye contact. I am very conscious of myself and make sure to look directly at a person when they are speaking. I monitor my eye contact very well.
And therein lies the key. I monitor my eye contact. Neurotypical people don’t have to constantly regulate their eye contact. It comes naturally to them. I have to think about it. So while I am in a conversation, there is always a background program running in my mind - analyzing if I’m doing all the things correctly.
This example illustrates the gap between “diagnostic autism symptoms” and a lifetime of unidentified autism. I also explore in another essay 4 Reasons Why Autism Symptoms Lists are Confusing.
When I work with late-identified autistics, I help them to uncover the aspects of their neurodivergent mind that they have been unconsciously designing coping strategies, techniques, and tricks to work with.
We have nuanced conversations about each of the symptoms.
This is where I fear for unidentified autistics who go to busy psychologists who quickly breeze over screening questionnaires or quick question tests. I fear that the unidentified autistic’s ability to cope and adapt will cause their diagnostician to miss that they are autistic. It takes nuanced, deep conversations to fully understand, not “yes” and “no” questions or scales from 1 to 10.
My fear is not unfounded. I have a mental health colleague who self-identified as autistic. When she was finally able to get a meeting with a psychologist, she was told she didn’t meet the diagnostic criteria.
I also had a client who I felt met the unique signs of autism. When he went for a formal diagnosis, he was told that although he showed signs of “high sensory sensitivity” his responses to the autism questionnaire showed he did not meet the criteria for autism. When reviewing the psychologist’s report, I saw that no other tests were used and the remainder of the time was focused on other tests not related to autism.
What an injustice. Our understanding of autism is evolving so quickly that our diagnostic tools are not keeping up. I’m not the only one seeing it. Devon Price explores similar concerns in their essay about autism diagnosis.
It's why I now only refer clients to neurodiverse psychologists for autism diagnosis. I want to ensure that the diagnostician is up to date on new information and can appropriately screen for autism.
It’s also one of the contributing factors to my opinion that self-identification as neurodivergent or autistic is sufficient.
It is up to each person to decide for themselves. Whatever they decide, I hope they have an opportunity to dive deeply into their neurodivergent mind and understand themselves at a level that is healing, empowering, and fortifying.
Thank you for reading. If you would like to explore your autistic identity with an autistic therapist, you can learn more about my therapy services here.