If you have autism, it does not mean you can’t be successful in life!
Meet Tony Tinervia, whose struggle with ASD (autism spectrum disorder, formerly Asperger Syndrome) led to more than a few falls before he rose up to conquer—and learn to live with—his condition. Autism spectrum disorder, in most cases, makes social interactions a challenge. For someone with ASD, communication and nonverbal social cues become a code that is near-impossible to crack.
As an article on Autism Speaks’ website states, “the challenges presented by Asperger Syndrome are very often accompanied by unique gifts.” In the case of board game inventor Tony Tinervia, that is indeed the case.
We caught up with Tony just before he headed out for a benefit dinner for his favorite charity, Autism Speaks. Here’s his story:
Hi, Tony. Welcome to Rise Up Eight! First of all, for those out there who don’t have Autism Spectrum Disorder (ASD: formerly Asperger’s Syndrome), could you tell us a little bit about this condition and how it impacts your life?
I was not diagnosed until my therapist’s first visit. She knew I had Asperger’s, since I didn’t look her straight in her eyes when talking to her. I was so happy, since before that I didn’t understand my mind. I…have a picture book mind and could have been an inventor from age 17.
I knew when I was given my nickname of T.J. when I was in a playpen. I didn’t talk until I was five, plus I sucked my thumb until I was 11.
During my early adulthood, I used my baseball and football fantasy play throughout this period to escape reality. I took mostly graveyard shifts at hotels to escape working with other employees and a boss. It was embarrassing that guests that checked in asked me about my British accent.
I did finally seek a psychologist in 2009, but they thought my fantasy sports games were just normal. But I didn’t give up. I am not normal, so from 2005 until now, I’ve learned to love going to all sorts of doctors.
Adults with autism are not as noticeable as children with it. I didn’t get help with Autism Spectrum Disorder until later in life, the word for which was changed from “Asperger Syndrome” a few years later.
Autism Spectrum Disorder often involves what doctors call “comorbid” conditions—conditions that occur frequently with another. Do you struggle with any of these conditions? If so, which ones?
I have OCD (obsessive-compulsive disorder) and used to keep track of all my gas stops, writing down all my gas mileage odometer readings and costs from 1985 to 2015. I quit after my therapist told me to.
I watch a lot of TV. From 1990 to 2015, I recorded all new episodes of David Letterman (he retired). I used to keep a log on what TV programs to record and watch, but I am just counting on my DVR to help me now.
I wonder if I was depressed all those years, but it was that people didn’t understand me at all. I hid in my fantasy world so no one knew, until I admitted it.
I thought someday these games I played in my mind and on notebooks could be board games.
And indeed they did become board games, didn’t they? Getting down to your own personal life: how does Asperger’s affect your daily life? What are your toughest struggles on a daily basis?
My mom says I should write a book. I guess I could, now! More to come… Keys to the Capitals popped into my mind in 1991, and I submitted it to a submission company. I was at my lowest then.. I had to adapt to my condition, and my self-esteem was low throughout this period. Why no one did feedback on me, I have no idea. I could have improved with judgement.
Those who don’t have Asperger’s Syndrome may not understand me, and it does affect relationships with certain parties. They do appreciate me caring for my parents, though, from 1996 to the present. My dad had Alzheimer’s from 2001 to 2012 and lived in long-term care the last 20 months of his life.
I look back in the past which I should forget and I get very angry, but somewhat think maybe God intended this to happen to me by my taking low paying jobs and then caring for my parents through their golden ages. I feel very proud of myself for this accomplishment.
I miss my dad, but he had Alzheimer’s for the last part of his life. I had the same traits as he did in record keeping–and the same mole he had on the base of his nose. I look up at him and believe he is looking down at us protecting us.
How does the condition limit your ability to do accomplish tasks easily? How do you overcome those challenges to succeed in the everyday affairs of life?
My mom is 89, and I am her full-time caregiver (she has RA). She gave up her driver’s license at age 80 due to…the judgment of bad drivers. I enjoy caring for her, but she doesn’t understand me being on my iPhone and iPad most of the day, plus my desktop.
I have my parents to thank for keeping me off the streets. My “mother bird” also has been caring for me, and she needs me too to live in our home of 30 years, or it would be long term care for her. I manage the finances and shopping and my mom’s care.
I like my speech therapist a lot and see her twice a week. She has 33 years’ experience, so I asked her I hope I have more than two more sessions left with her. I see my psychologist twice a month (…she has played my prototype game with me also. She loved it).
My two brothers and my sister all have families to care for and live miles and miles away.
I am 59; my mom is 89, and she is the most important thing in my life, so I told her, “Let’s aim for 93 like your brother in Ohio.” Her sister passed away in April at 91. We are flying to Denver for my mom’s granddaughter’s wedding in September.
I don’t talk well on the phone. But children with my condition are getting more help these days. My great nephew has autism at five years old, and he’s taking speech.
I wonder why people didn’t confront me on getting help in my early stages. Why I didn’t go to the dentist from ages 21-49, why my primary doctor didn’t notice my condition at age 46 and even during physical exams. My life changed in 2005, and I transferred my past skills to become an inventor. I wonder why was I hired by low income employers with a bad smile, why couldn’t I be diagnosed at an early age…
How did you test your game (about the capitals of the U.S.) for the topic of your first board game?
I…played my favorite psychologist, Megan, during our session, and she enjoyed it. I have played my financial advisors and personal trainer, and they love it. My great nieces–ages three to 10 years–have the original prototype and played it 30 times in three weeks.
After two working prototypes, we now have 1500 units on their way to sell on my website, on eBay, on Amazon.com and in an email campaign aiming for educational targets, so yes, there’s a lot of pre-market buzz on a unproven game board.
If it doesn’t sell, I will bring them to swap meets. This is a very addictive game, and I may be aiming it toward the Chicago Toy Fair in November, since I was approved by their LinkedIn group.
Let’s switch to your business life. Difficulty recognizing and responding to social cues, facial expressions, and other things many people take for granted are part and parcel of many people who are on the autistic spectrum. How do you overcome the challenges these limitations place on doing business–a world in which reading social cues can make a difference between a flop or a done deal?
Tell us about some of the times these limitations caused you to fail. How did you overcome these roadblocks to rise up to make your mark in the business world
With our resources, I aimed to get my dream released. It’s a lot of hard work and demanding to get professionals working on your project designing and approving your dream game. I have to pick the right marketing, website design, manufacturer and choose the right financing and opened an LLC, plus I opened a business banking account to protect our personal assets with a home-based business.
Starting a business is very risky, but I do have a business plan. Amazon.com is a big step in which I had to communicate a lot to be awarded a Professional Seller account.
So what hurdles did you face in starting the business up?
It’s a lot of hard work and demanding to get professionals working on your project designing and approving your dream game. I have to pick the right marketing, website design, manufacturer and choose the right financing and opened an LLC plus opened a business banking account to protect our personal assets with a home-based business.
I am so angry looking back at my life, and I’m being very aggressive in marketing my Keys to the Capitals to sell well before Christmas. On my website I claim my company has a future spinoff, but it is not guaranteed until my first invention learns to fly out of its nest…
Certain parties think I am going overboard, but I ignore them. Why did they not interfere in my past life to help me? Still no support from those people, and they claim my game will be a failure before it even debuts—even after two working prototypes exist.
My mom gets very angry at me and thinks that the startup cost was a lot, but I look on the positive: the half-full cup.
How do you advertise and market your game?
Amazon.com has good ties to sell items, and the games are still two to three weeks from hitting the warehouse. Sales are light, but we need a “Buy Now” button.
We have an email campaign aiming for educational targets, so yes, a lot of pre-market buzz on a unproven game board. If it doesn’t sell, I will bring them to swap meets.
Do you have a backup marketing plan?
If I have to, I have a person that wants to go to door to door selling my games. I am thinking of adding t-shirts to my website to sell.
Do you have any personal ritual or stress reliever that helps to empower you through the tough times?
My therapist gave me a book, Thinking in Pictures, that released my talents as a game designer. With our resources, I aim to get my dream released.
[I haven’t] given up at all on this dream; maybe we only live once before Heaven. I used to believe in reincarnation when I was young.
God must have thrown the mold away on my mind structure. There are no guarantees in life, but we have to try and make the best. I am.
My favorite new charity is Autism Speaks, and I want part of my sales to go to that foundation.
What advice would you like to share with our readers who face similar challenges, including adults who have been recently diagnosed with autism?
I didn’t take off until I was 49. People with Asperger’s can invent. People who just got diagnosed should understand their limits in life and seek help and to have assistance in achieving their goals in life.
I haven’t worked for six years but just got Social Security disability insurance last October after hiring an attorney.
I think my story is a good comeback story for people who have lived in the past with this condition like I did and did not get diagnosed until years later. My sister told me she thought I had autism in 2002, but she never told me. I had to want to help myself, and now I am using my talents to build my…future. It is uncertain, since I never had a good earning year from 1978 to 2010, so my Social Security disability is very low at $1000 per month.
The wrong kind of feedback can bite you. I have to ignore it and look forward to my future.
I love feedback now, though. I like my speech therapist a lot and see her twice a week. She has 33 years’ experience, so I asked her I hope I have more than two more sessions left with her. I see my psychologist twice a month, and she has played my prototype with me also. She loved it.
I get angry at times, but I pat myself on the back that I am getting professional help.
What advice would you give family members of someone who has been diagnosed with autism?
A family should try and offer advice and understand the conditions and offer assistance to their goals in life–not to shut them out.
Tony’s story begins like so many of those who live on the autism spectrum. Yet he, with the help of his mother and his unflagging courage, has conquered his challenges. After he fell again and again, he rose up the eighth time. The rest is history…
Purchase Keys to the Capitals on https://www.amazon.com/dp/B01I7JC2AQ
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