One man’s story about autism screening, and the relief of getting an answer to lifelong questions.
Daydreaming. Forgetfulness. Repetitive hand motions. Academic precociousness. Social awkwardness and highly selective communication preferences.
These were all signs and symptoms I exhibited as a child, for which I was labeled both “absent-minded” and “gifted.” Despite individualized education help and coping strategies, the way I stood out among my grade-school peers often baffled my parents and frustrated my teachers.
As a child, I preferred to spend free time alone, reading in my room, often the same books over and over. My parents worried that I didn’t have enough friends, but I found the few friendships I did have hard to navigate. I felt BIG FEELINGS but lacked the words to express them and the confidence to share them with others. Not knowing what else to do, I accepted the labels applied to me and did my best to adapt to a world that always felt a little off balance.
I knew I was different. I just didn’t know what to call it or how to accept it. But then, no one did.
So I coped. I adapted. I struggled. In today’s parlance, I “masked.” Yet, somehow, I thrived, all the while feeling like I was making everything up as I went along, like everyone else was operating from a shared playbook and I never got a copy.
By my early 50s, I had been married 30 years, raised three children to adulthood, and managed a 25-year career in digital content. But the path to those successes was strewn with relationship problems, personal regrets, and untold detours of confusion and self-doubt.
Early in 2024, in yet another behavioral therapy session trying to overcome these barriers, my therapist asked me a question no one else had: “Have you ever been told you might be autistic?” My throat locked in bewilderment as he reached for his copy of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (commonly referred to as the DSM IV, it’s published by the American Psychiatric Association).
What he read to me about autism spectrum disorder sounded mostly like a recap of my life. The signs and symptoms were there.
Autism is a neurodevelopmental disorder. It’s usually identified in early childhood, but many people with autism manage to mask their condition or find ways to work around it until they receive an adult autism diagnosis. The diagnosis comes from a professional evaluation.
After speaking with my Vanderbilt Health primary care provider about the possibility that I could have autism, my therapist referred me to a psychiatric specialist to pursue a formal diagnosis.
A few months later, it took Dr. Brianna Lewis at the Vanderbilt Child and Adolescent Psychiatry Clinic 70 minutes of questions to give me an answer: “Dan, you have autism.”
The weight those words lifted off my shoulders was immense. This truth answered so many questions yet raised so many more. My vision crystallized in a way that made sense of my past while also giving me the focus I needed to chart my future.
Two years later, I can reflect on what I’ve learned in a way that might help others as they seek their own diagnoses.
An adult diagnosis isn’t right for everyone
This may seem like an odd item to lead with, but it’s important. The neurodivergent behavioral field still lacks specialists who work mostly or exclusively with adults. I was fortunate to see a specialist so soon, yet one whose training centered largely on childhood autism. Many people must wait much longer and at a prohibitive cost.
Online assessments from trustworthy organizations such as Embrace Autism can help you get a general idea of whether you’re on the autism spectrum. (ASD is a commonly used acronym for autism spectrum disorder. More about the “spectrum” term below.) If you do pursue a formal diagnosis, check what coverage your health insurer offers. In some cases, your specialist may be able to bill at a lower hourly consultation rate.
From my personal view, if you think your past questions and struggles suggest autism, you’re probably correct. For me, the professional answer was worth the effort because it gave me a wealth of specific information with which to pursue greater understanding.
Support is crucial
Positive encouragement from those you love and trust will carry you through this process. To a person, everyone with whom I have shared my diagnosis has reacted with joy. That might not be true for you. Autism is a controversial subject. Not everyone will support someone they love pursuing a diagnosis, let alone receiving a positive one.
This may determine with whom you share your news. That’s okay. Your well-being is your own to manage. Others’ expectations and assumptions may have to take a back seat.
Community is complementary
The irony is not lost on me that an introverted autistic person like me needs others to thrive. But community is up to you to define. Support groups are great and, in some cases, overflowing with resources. I found such a group helpful for the first year after my diagnosis. But over time I found myself returning to the same trustworthy people who had always been there for me, diagnosis or not.
Remember, the “S” in ASD stands for “spectrum.” As the National Autism Association explains, that means that autism “can range from very mild to very severe.” You have unique needs. Don’t be ashamed if you manage your diagnosis better apart from a larger support network. At the same time, if you feel led to join a community of other autistic persons and their allies, do it! Accepting how you express that part of your neurotype is key to your growth.
Less struggle, more adapting
By far, the best thing for me about receiving an autism diagnosis later in life was that it ended my struggle to change. My neurotype is not going to heal, improve or go away. It is me and I am it. This means I’m free to accept it and stop trying to change it. The goal now is learning to live with it, to operate within my limits. I capitalize on my strengths and pursue those people and activities that energize me and give me purpose and joy. I admit, it’s hard. But the effort is worth it.
In my final therapy session following my diagnosis, my therapist asked me what life was like now. My answer, in the sort of analogous language that is true to my neurotype: “It’s like getting to know a person who has been walking alongside me all my life but whom I’ve never seen. ‘Oh hi. Nice to meet you. Sorry I’ve never noticed you before. But I see you now.’ And now I can get to know them, to live my life with this person who is actually me.”
If you decide to get evaluated for an autism diagnosis in adulthood, I wish you the best. The answer to whether you are on this spectrum may be “no,” which can still be helpful. But if it is yes, give yourself permission to feel all the feelings. Take plenty of time to decide what to do next. So much of your life up to now has probably seemed out of your control. This is one moment when you can change that.
This article was written by Dan Kassis, a senior communications specialist with Vanderbilt Health.
If you want to be evaluated
Primary care physicians are often the first people to talk to about getting screened for autism, or other neurodevelopmental conditions. Primary care is also your first best contact for a wide range of general health concerns. Vanderbilt Health primary care providers work in many locations throughout Middle Tennessee to help patients achieve their best possible health.
