Am I on the Spectrum? Difficult Diagnosis Decisions
By Tracy Peterson | January 28, 2025
My son, Timothy, was diagnosed with "autism-like characteristics" and mild developmental disability when he was three years old and formally diagnosed on the autism spectrum in 2005. Never once did I consider that I might be on the spectrum, too. That was until I met with a counselor to navigate an exceptionally stressful point in my life.
My eldest son lived out of state; my other three were between middle and high school. Timothy's needs and specific routines often dictated the day, and my two youngest seemed proud that they were part of a class known for procrastination.
Motherhood on its own was a challenge. I had just changed my late-in-life college major, was about to start a new job while helping a loved one through a difficult time, was active in our church, and then the worst of all happened. My dad was diagnosed with cancer. It was just too much on top of everyday life.
So before I lost myself in the new stresses, fears, and overall chaos, I made a deliberate decision to be proactive and do what many have advised me to over the years, but in their eyes, was never quite good at or did enough: taking some time for a bit of self-care. I was already taking 60-minute daily morning walks before work and hiking as much as eight miles on the weekends. I was not shy about communicating my thoughts and needs to the best of my ability. And my husband, Ted, was, is, and remains my rock on all of that. Still, I often felt that I was speaking a different language and feeling like I was doing too much and never enough, dismissing it all as every mom feels this way. I decided it was time to seek help beyond my family and friends and made an appointment with a professional.
The day came, and I was nervously excited to be able to meet with a counselor. I had so much to unpack and was looking forward to stress techniques and ideas I may not have considered. Then, the unexpected happened. First, I arrived at the appointment to discover that they kept a therapy cat in their office. Being allergic, I immediately stated my issue and that I would not be able to complete the session in the office safely. They insisted that I would be okay with an open window. I was reluctantly convinced to stay, taking the Benedryl I carried just in case.
I was adamant that I would now stand with my purse over my shoulder the whole time. After all, the last thing I needed was cat hair and dander on me, my jacket, or purse, and to carry any trace amounts into my vehicle. It felt strange to be standing while mentally preparing to talk with the counselor, who comfortably sat in their designated chair while stroking the cat. I kept eyeballing the orange tabby, trying to keep enough distance to prevent a hive outbreak and asthma attack.
The counselor thanked me for completing the forms and the payment ahead of time, then asked the big question. "What brought you to me today?" I held a deep breath, fearing an unwanted allergic reaction, and then blurted it out. "I am a mom of four; one lives in another state, three are in high school, of which one is non-verbal autistic. I'm drowning in family and friend issues, just started a new job, am in college, and my dad was just diagnosed with cancer. Where do you want to start?"
Image Credit to NetworkSolutions.com Stock Photos
The counselor paused while still stroking that cat. The thought that the feline was there more for their benefit than for their clients intensified as a moment that felt like a lifetime passed by. I began to pace and gather a breath of fresh air from the cold breeze coming through the open window. Of all the things the counselor could have said, something like "Wow, that sounds like a lot," or "Where do you think we should start?" was never spoken. Instead, what I heard was shock number two: "I think you might have autism."
...Wait, what???
The jaw-dropped and confused expression I felt on my face must have said it all, and they quickly continued to say that they have family and clients on the spectrum. I just "struck" them as maybe being on it too. I was angry at myself for making such a massive mistake in scheduling with this less-than-professional individual. They quickly apologized for the abruptness of their comment and acknowledged they could not diagnose it; it was merely an observation. We continued the session, but I couldn't help but focus on that one comment and could not move past feeling deflated, frustrated, and even a little defeated. I never went back or sought counseling elsewhere to navigate the stress of the time.
That was over a decade ago, and to this day, I have regularly questioned if I might be on the spectrum. I have had countless conversations with my spouse and some professionals. The end answer was always the same. Will it make a difference? What will I gain? Then life goes on as usual until the next triggering event happens, and I start questioning myself again. As often as I have explored the idea of going through the tedious process of being tested, I remain torn. Knowing that the older I get, the greater the challenge of accurate testing.
Image Credit to NetworkSolutions.com Stock Photo
All my life, I have struggled socially and experienced anxiety. While I have found ways to deal with all my issues, I've always preferred being alone or in a small group to a crowd and found ways to make that happen since grade school. When my classmates would be outside for recess, whenever possible, I volunteered for tasks that kept me in the classroom. Clapping erasers, making copies with the ditto machine (look it up), and designing the giant back-of-the-room corkboards for the season or holiday. I never did well with fluorescent lights, got dizzy in malls, and certain sounds still grind on my brain in ways I cannot even begin to put into words.
As a kid, I spent countless hours in the nurse's office, always with "nothing wrong," even though I had a long history of random fainting, head and stomach aches, and asthma. As a teen, medical tests came back negative. As an adult, every time I brought up an issue or concern, it was brushed off, leaving me feeling stressed, unheard, under- or over-treated. That constant question to my husband, "Am I speaking a different language?" Further, asking, "Is all this in my head? Am I overthinking? Am I normal? What's wrong with me!?" Then I hear that counselor in my head. "I think you might have autism..."
I evaluate a lifetime of experiences. Over fifty years of memories flash through my mind. Seeing myself through a cloud from toddler through today. Oh, how far I have come over the years! I hear voices of the past. Soundless yet booming in my head and sometimes punching through my heart. Life lessons shaped and, in some ways, continue to trap me. I have distant memories that amplify current emotions. I sometimes remember and feel everything and nothing all at once, having to dig deep to draw it into the present. I live with a mind that can't shut down—always thinking and overthinking about everything and nothing.
Without routines and self-created structure, I get lost in the shuffle of the day. I find my freedom and clarity hiking. But only if they loop back to the starting point. Following the same path back? What's the point of that? What a waste of time. Silly, right? I need to know ahead. I research. I plan. Yet I want an adventure. I don't get enough time on the trails.
So many times, I've stated, "I wish I could just get in my son's head for just an hour so that I know what it is like to be autistic." I catch myself holding my hand to my forehead, partially shielding my eyes, realizing Tim always does that. Which one of us did it first? Who's copying who? He decompresses in his Privacy Pop. I decompressed (not knowing it then) in the "fort" I made in my childhood closet. We have so much in common, yet we are so very different. Or are we? Should I be tested to see if I am on the spectrum? Yes, no. I don't know. There are so many things to consider:
- What if the testing proves that I am on the spectrum?
- What if it comes back that I'm not?
- Do I have the time and patience to go through the long (and expensive) process?
- Do I want or need the label?
- What are the benefits and disadvantages of a diagnosis that will directly impact me and my family?
- What if I have another frustrating experience within the healthcare community?
- What difference will it make if I am or not on the spectrum? After all, I'm still the same person, right?
I read, research, and then stop. I frequently join autism-related social media groups and even created one! I find myself frustrated and overwhelmed with the politics and intolerance of a group of individuals who, in theory, should be the most compassionate, empathetic, and inclusive.
I find groups requiring labels to be shared before posting anything, or that only those formally diagnosed can join. I have been part of groups where the parents of a newly diagnosed young child need a place to ask questions and, let's face it, vent and mourn the loss of experiences their child may or may not have. I get it. It can be part of the acceptance process. There is absolutely nothing wrong with that. Everyone needs support at some time. I've personally been past that point for a long time
Before social media and Google, I attended in-person support groups searching for answers for basic daily life. Can anyone recommend a good autism-friendly dentist, barber, restaurant, or playground where I could take my kid? We attended events intended for kids with autism, only to be asked to leave because my autistic child was too disruptive.
Strangers remind us of the importance of awareness and support as they approach us, apologetically asking, "I don't mean to be rude...Does your son have autism?" and when I confirm he does, they open up to me about someone they know or love who is on the spectrum.
I get back on Social Media and then stray away again, wanting to be part of the community but struggling with how some on one end of the spectrum cannot seem to understand the needs of those on the other side. I find irony in how some of the most common traits can cause division over diagnosis, labels, logos, methods of communication, organizations, etc. Then, I accept that the differences in what sets the autism community apart can also be what pulls us together. What we have to remember is that we all have our own experiences. No two are on the same journey at the same time. It is our responsibility to learn from and lift each other. Remember, the spectrum is vast.
I further reflect, evaluate, and compare myself to Timothy. Did he inherit my quirks and habits, or did I absorb and adjust to his over time? With age and experience, am I more aware of myself or changing?
Find this product at Amazon.com
Over the years, I've read countless blogs, social media posts, and books. I've scoured through the CDC, WHO, and NIH websites and so much more. Famous people on the spectrum, such as Temple Grandin and advocates such as Dr. Stephen Shore, are great inspirations.
However, it wasn't until I recently found and read I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults by Cynthia Kim that I felt truly inspired. Her writing resonated with me as if she were speaking with me.
I even found the courage to utilize online adult autism assessment quizzes. While self-testing is NOT a diagnosis, I am confident enough in my answer for right now. Below are a handful of the assessments I explored. While many are quite similar, others are drastically different. My results ranged from mild to high probability that I am on the spectrum, with suggestions to seek professional testing.
After all these years, I finally feel safe enough to move forward and have started taking action. Did I mention I started my journey with Exploring Our World Differently over a decade ago? Yep…I've felt stuck, and in some ways, very lost for an incredibly long time. However, since taking the giant step of self-acceptance, whether or not I am on the spectrum, self-love, self-forgiveness, and allowing myself to be "me," I have made more progress with sharing my journey in the last year than I have in several decades.
So, am I on the spectrum? While unofficial, the answer I am leaning towards is "yes." Right now, while recognizing self-diagnosis is often highly upsetting to some who are formally diagnosed to be on the autism spectrum, I consider the possibility to be very likely, and accepting the possibility is game-changing in a lot of ways. Whether or not I am ever formally diagnosed to be on the spectrum or not, I live on it every day with and through my son. I want to say I'm guiding his journey. But the hard truth is, he guides and shapes mine, and I can't imagine life any other way. I'll let you know if I ever take the leap and obtain a formal diagnosis.
Are you an adult who has recently been diagnosed with autism? Do you think you might be on the spectrum? Let us know by engaging with us on our Facebook Group
Tracy Peterson is a parent of an adult non-verbal person on the Autism Spectrum and the founder of Exploring Our World Differently. Tracy works diligently to create a holistic balance between a special needs home life, health, career, and spirituality. She has a B.A. in Environmental Studies, and her passions include avid reading, journaling, blogging, recruiting, nature, gardening, camping, and hiking. Read more from Tracy Peterson...
FREE ONLINE ADULT AUTISM SELF-ASSESSMENTS (NOT DIAGNOSIS!)
Recommended Reads
- The Autistic Brain: Helping Different Kinds of Minds Succeed by Temple Grandin & Richard Panek
- Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome by Dr Stephen Shore