I suspected I was on the Autism Spectrum for over 20 years before I finally received a diagnosis. Like many people with high-functioning autism, my autism went unnoticed because I was intelligent enough to succeed in school and my autistic traits were not seen as neurodivergent, but as learning disabilities, anxiety, and depression.
Annie Kent, MA
I was a lonely kid, who didn’t really fit in. Like many female Aspies, I can recall being the last called on in gym class for team activities. I had a few friends but “lost” most of them as my parents moved from city to city, state to state. As I got older, I found it increasingly hard to adjust to new neighborhoods and new schools and started to withdraw more into my own little world.
Upon entering University at age 16, I thought all my problems were solved. I fell in love with the study of Human Psychology, but my social skills deteriorated. Not only was I several years younger than my classmates, but I would go to class, eat lunch alone in whatever hiding spot I could find, attend more classes, and then head home to complete assignments.
My reality existed entirely in my mind, and I let no one in. I could not find meaningful employment. I returned to University a few times, but, for the most part, had little interest in the course content, little motivation to succeed and obtained average grades – with no job at the end of it all. My depression became so severe, I begged my psychiatrist for a lobotomy!
No One Noticed My Autistic Traits
In contrast to my studies in clinical psychology and related social sciences in which I excelled, my failures should have triggered a medical professional to refer me for Autism testing. With the knowledge of neurodivergence available today, I hope other girls fare better.
About twenty years later, after researching and educating myself about Autism Spectrum Disorders, I found a psychologist, herself autistic, who conducted the formal assessment. An MD’s signature made it official. I was deeply relieved. Finally, I had the missing pieces to a puzzle that had confounded me and the many physicians I had seen.
Incorrectly Diagnosed
Despite asking about Autism for two decades, the diagnoses I received included:
- Schizoaffective disorder
- Anxiety
- Borderline Personality Disorder
- Schizophrenia
- Demonic Possession1
- Dissociative Identity Disorder
- Dependent Personality Disorder
- Obsessive-Compulsive Disorder
- Temporal Lobe Epilepsy
- Schizoid Personality Disorder
- Bipolar Disorder
- And my “favorite:” Angel Eyes and a Lost Soul (yes, seriously)
Finally, a Diagnosis
Being diagnosed validated my experiences and improved many aspects of my life. I finally feel real. I am happier, but success is elusive. I blame COVID-19 and the dearth of affordable supports for newly diagnosed adults in my geographically isolated community.
“Now What” Is the BIG Question
My current psychiatrist is focusing on my coexisting attention deficit disorder, and some of my impairments do overlap with ADHD, which is also a neurodiversity. I experience dyspraxia: “a neurodevelopmental disorder of movement and coordination in which messages sent from the brain to the muscles are interrupted.”1 The term derives from Praxis, which is “the ability to combine information from the environment and successfully perform actions to completion.”3 Occupational Therapy might help me cope with fine and gross motor deficits.
I struggle with reading social cues; I mask my differences; have issues with proprioception, a.k.a. “kinaesthesia…the body’s ability to sense its location, movements, and actions the sense of self-movement, force, and body position,”4 and interoception, “the feeling of knowing what is happening in your body, for example if you are hungry, thirsty, warm, cold, etc.”5
I am socially isolated, and while I enjoy get-togethers with friends from former workplaces, I would welcome additional social support.
If asked, I tell people, “the only things I can do are research and writing.” And I’ve been criticized by others on the spectrum, with comebacks such as, “consider yourself lucky,” and “you could make a career of that.” What those people don’t know is that I write because I struggle with expressive language and nonverbal communication, interpersonal soft skills.
Soft skills encompass a wide range of neurotypical (NT) competencies, but principally listening and effective speaking skills, attitude, work ethic, teamwork, leadership qualities, time management, decision making, and conflict resolution. Plus, the ability to control and manage your emotions. These social skills are the qualifications most employers want in employees they retain.
Stigma
Stigma wasn’t a new experience for me, but stress in the workplace, especially dealing with managers, eventually broke me. When I sought support, I received criticism because I couldn’t adequately verbalize the problems I was facing. In fact, I wasn’t always aware there was a problem, until the manager asked to see me in her office.
Has My ASD Diagnosis Benefited Me?
As I’ve said, I’m happier. Missing pieces have been inserted into the puzzle that is ME. I’m making sense of my past – and the present. On the other hand, I feel as if I’ve been left with almost nothing but Dr. Google and self-help books to help me incorporate this new self-knowledge, or to cope with the traits that set me apart from neurotypicals.
Not Everyone Wants a Formal Diagnosis
My pursuit of a diagnosis was primarily for personal validation. There are adults who view a formal diagnosis as detrimental. If they’re satisfied with their life and career, and embrace their uniqueness, the expense and stress of neuropsychiatric testing may not be worthwhile.
For others, though, an assessment and diagnosis may help them, family members, partners, employers, colleagues, and friends, to understand why their thought processes and life experiences are different, and potentially how to fit their square peg selves into NT round holes.
Children
It’s all a matter of choice for adults. However, “a…diagnosis and intervention can benefit children on the autism spectrum and [those] with other developmental disorders. Timely diagnosis is a necessary first step for identifying and beginning appropriate therapies and supports.”6
“A cognitive assessment can help determine the [child’s]:
- Strengths,
- Areas of difficulty, [and strengths],
- [And] level of intellectual functioning.”6
Given my own journey to diagnosis, if you’re the parent or guardian of a girl who might be exhibiting signs of autism, please ask for a referral for autism testing. While her differences are far more likely to be noticed today, if she’s “high functioning” she may already be masking her symptoms. Her struggles may be dismissed as shyness, a learning disability, behavioral problem, or be overlooked because she doesn’t fit autistic stereotypes.
My path to an autism diagnosis was fraught with misdiagnoses and the failure to understand that autism manifests differently in boys vs. girls. My discovery journey started with testing for learning disabilities when I was seven and followed a tortuous trail through the DSM before landing on Autism, Level 1. I believe if what we now know had been known and accepted years ago, I probably would have qualified for the support services I needed to be far more independent. The burden of care has shifted from my parents to my spouse, and that affects his health. I’m left pondering the question, What If? We’ll grow old and he won’t be able to support my mental health forever. What happens then?
Annie Kent, MA Psychology, spent two decades working in public sector disability, and mental health and addictions advocacy and education. Diagnosed with three closely related forms of neurodiversity, a lack of awareness and understanding led to burn-out and retirement from the field. She remains an active advocate, engaging remotely with several Autism, ADHD, and Disability organizations and forums. For more information, email Annie at anjolie1031@gmail.com.
References
- Kiley, Rachel. Pastor Greg Locke Slammed For Saying Autism Is Demonic Possession. God, 27 Jan. 2022, https://god.dailydot.com/demonic-possession-autism/.
- Dyspraxia. Healthdirect, https://www.healthdirect.gov.au/dyspraxia. Accessed 8 Feb. 2023.
- What Is Praxis? Mosaic Health & Rehab, Belgrade MT, 14 Mar. 2022, https://mosaicrehabmt.com/what-is-praxis/#:~:text=Praxis%2C%20also%20known%20as%20motor%20planning%2C%20is%20the,often%20break%20praxis%20abilities%20down%20into%20specific%20parts.
- Santos-Longhurst, Adrienne. “Proprioception: What It Is, Problems, Diagnosis, Treatment & More.” Healthline, Healthline Media, 16 July 2019, https://www.healthline.com/health/body/proprioception.
- INTEROCEPTION | English Meaning – Cambridge Dictionary. Cambridge Dictionary | English Dictionary, Translations & Thesaurus, https://dictionary.cambridge.org/dictionary/english/interoception. Accessed 8 Feb. 2023.
- Autism: For Professionals. Government of Canada, https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd/professionals-autism-spectrum-disorder-asd.html. Accessed 8 Feb. 2023.
