Editor’s Note: Find updates from past contributors to “The View From Here” at the end of this article.
By Douglas Sparling
I have lived two lives of “before and after.” One frustrated by uncertainties, the other embracing every moment.
I have lived an imperfect life, flawed but not broken.
I am autistic. An Aspie. Somewhere on the autism spectrum. Diagnosed with Autism Spectrum Disorder (ASD). Yes, that’s me. But I’m also much more than that. But I’m that. And it really, really explains a lot.
This first life has a long “before” and a shorter “after.” It’s too bad it worked out this way, but it is what it is. Better late than never. I was diagnosed with Asperger’s Syndrome later in life, and one of the biggest outcomes was that I could finally make sense of it all. This was a big deal. I could look back at the times of not fitting in, when I struggled with social situations, when all those sensory issues that would make my head explode (or feel like it anyway), and it all became crystal clear. I am normal. I am autistic.
I am my normal and it’s ok.
I was diagnosed with Autism around five or six years ago. I self-diagnosed before that. I first suspected I might be on the spectrum when my son was diagnosed. This is certainly not at all uncommon. The fruit doesn’t fall from the tree. Later, I was diagnosed with Asperger’s just like my son. And so, it goes.
I lived undiagnosed for so long that I found my own coping mechanisms. I used television a lot to learn about social interactions and closed captioning to associate an emotion with a facial expression. I learned the fine art of masking or camouflaging autism. This does come with a price, though. It’s extremely tiring. Now that I’ve learned the ins and outs of the neurotypical mind, acting the part has become relatively easy, and much less exhausting than masking.
I never really tell people that I’m autistic. I do, however, let people know about sensory issues.
Autism often comes with comorbidities and a common one is called Sensory Processing Disorder. I have an aversion to bright lights and noise, and it can shut me down in no time. This is nearly impossible to mask so I generally just avoid those situations.
Another sensory issue of mine is touch. For most of my life, I hated to be touched and hated to be hugged. My mom and I had this inside joke. She knew I hated to be hugged. Anytime I was getting ready to leave after a visit, she’d say “Come on and give your mom a hug.” I’d stand there with my arms at my side while she hugged me. It was our thing and it worked.
I found that photography was a great way to express myself. With my “Aspie eye,” I was most attracted to B&W architectural photography. I love the lines and patterns and B&W seemed to make them stand out more.
After everything started to make sense, I was diagnosed with incurable Stage 4 Metastatic Cancer.
So begins life number two. The “before” went dim as a dying star. A diagnosis of cancer, any cancer, any stage, is life changing. Autism didn’t go away, it just got over shadowed.
My cancer was so advanced that I immediately started chemo. That lasted for four months. It didn’t cure my cancer, but it did stop the cancer from growing. About six months later tests showed my cancer was growing again, so I went on a clinical trial and did four more months of a different chemo.
Again, my cancer quit growing and that’s where I am now.
But then there was a change that I never expected. My dislike of being touched, and hugs, disappeared. I’ve grown to enjoy physical touch, and I especially love hugging. How I didn’t like hugs for so long is beyond me.
I also found that my photographic “eye” changed. I’ve come to love vivid colors and abstract images. I discovered public domain images of cancer cells on the NCI’s website, and I use those to make colorful abstract art. My next project is to use my own bone and CT scans as my source images. It should be interesting as they’re black and white, not the color I’ve grown to love. I can’t wait to see if I’ll stick with B&W or use color to brighten them up.
This all sounds wonderful, and it is, but don’t get me wrong. I hate cancer.
I wake up every day and feel the pain of metastases in my bones and the numbness and burning of my feet and hands due to peripheral neuropathy. I wake up as tired as when I went to bed the night before. Fatigue is a constant companion. Pain and nerve medication keep me going, but it’s tiring. I sometimes try to remember when cancer wasn’t a scary word, before it came into my life, first with my mother who died from it, and now me, who eventually will.
Regardless, I’m a better person now, I really am. Cancer consumes my life, but it doesn’t consume my Autism. I wonder if anyone has written about cancer from an autistic’s perspective? I’ll add that to my list.
Life is what we make it. I choose to celebrate life, to celebrate my differences, and celebrate my appreciation of simply getting up and living another day.
Doug Sparling is a self-advocate who resides in Missouri. He has found a unique perspective on life as an individual on the Autism Spectrum who also has cancer. He’s excited to share what his life looks like from where he is and hopes it inspires you just as it has inspired him. Follow him on Instagram @cancerasart.
THE VIEW FROM HERE: Jacob Fuentes
Jacob has been sharing his transition journey from high-school to college. Read “I’ll Never Go to Harvard…And That’s Okay.” In this issue, he writes his final update as he heads off to college.
“After twelve years, over fifty teachers, and an uncountable amount of homework assignments, I have now graduated from high school and am preparing to move onto that next step of life: College. Before I get into that, I would like to discuss what I have done since I last wrote this piece. I selected a college, graduated high school, and subsequently had a graduation party. I also went on a trip to Europe with my debate team and practiced driving to prepare for my commute to college. The last event is important.
Honestly speaking, it was scary at first. I was terrified by the drive to my school, which consists of about half an hour along a fast-moving highway, but I persisted in doing it. In the end, it gave me one of the best sensations that I have ever felt: Independence. Driving to and from places has given me more independence than any school trip to Europe ever could. With the independence comes the confidence and, with that confidence, I know that I will do great things in my new school. Rollins College, here I come!”
THE VIEW FROM HERE: Carly Fulgham
Carly has been sharing her journey from her diagnosis to motherhood. Read “My Road to Motherhood.” Carly updates us on her latest parenting joys:
“The last six months have been a whirlwind for this Autistic Mom! I’m working with a team of people to help my son catch up with some missed milestones and he’s making great progress. Early Intervention works. The last three months have been rough. My husband was unexpectedly diagnosed with a tumor in May and had to undergo emergency surgery with six weeks of radiation to get the rest. I’ve definitely learned what it would be like to be a single mom. Without the support of a couple of friends and my mother-in-law, I would have had to abdicate some of my non-profit responsibilities. But, thankfully, they’ve been able to help. We’re hoping to get back to normal in the next month and we’re excited for our first family road trip to Yosemite in September.”
THE VIEW FROM HERE: Anita Lesko
Anita has been sharing her career journey as an autistic woman. Read “Starring in the Real-Life Drama as ‘The Good Anesthetist’” Here’s the latest career happenings from Anita:
“In April I flew up to Troy, Michigan for a keynote presentation at an autism conference and do a book signing at the Barnes & Noble in Rochester Hills, Michigan. I met a lot of great people while I was there. A week after that I flew to Philadelphia, PA where I spoke at a Future Horizon’s conference along with my friend Temple Grandin. While I was there, I visited a PATH Certified Therapeutic Riding Center on the outskirts of Philadelphia. I was extremely impressed with the people there who run the program. It was the Pegasus Therapeutic Riding Center. It was immaculately clean, extremely organized, the horses were beautifully maintained, and it is run top rate. I got to watch several individuals get their riding lessons and I am working on an article about that experience. Horse therapy is incredibly effective at improving the lives of those on the spectrum, both children and adults.
I am working on another book which is totally unrelated to autism! I’m hoping to have it done in the next few months. I blocked off several months from traveling to go speaking as I need the time to write the book.
Years ago, I used to make handcrafted soap. I’ve been telling my husband Abraham about it for a long time. Finally, I decided to start making soap again, and I taught him how to make it too! I make it via the cold process method. We are using pure essential oils, dried herbs which we grow ourselves, nourishing shea butter, and other lovely ingredients. We are practicing mindfulness and creating not only luxurious handcrafted soap but creating an incredibly peaceful atmosphere which is the best therapy on earth.
I’ve also made a major life change, which has resulted in a 35-pound weight loss so far! I’m feeling like I’m 20 years old! I’ll save that for next time for the Health issue to share my secret!
I’m still working full time as an Anesthetist at 40 hours a week. I do a lot of spinals for knee replacements and hip replacements and assist with general anesthesia for all the rest.
I continue to write articles, individual chapters for other people’s books, and various publications. Life continues to be a whirlwind!”
In ‘The View From Here’ column, we zoom in on the lives of autistic individuals at various stages in their life journeys. Our Editor-at-Large, Conner Cummings, came up with the idea (brilliant!) and the name was voted on by a group of our autistic peers.
Read more articles on “Traveling the Spectrum Way” in Zoom Autism Magazine, Issue 16:
Discover more Zoom Issues: