My Incredible Autistic Son

Life is full of surprises. The bad ones are tough even if you do become better after enduring and overcoming them. The good ones can be really great though; so great that if I'd been given another chance to do things over, I wouldn't change anything in order to avoid the risk of losing those surprises that have been so fulfilling even though I never knew I wanted them. My son, Benjamin, is one of those surprises who is also the cause of more great surprises in my life. He's just a little guy (3.5 years old), and he's already helped me so much.

We didn't plan to have a child when Benjamin came along. Logically, it seemed like terrible timing. We were trying to regain financial stability, I was doing my best to support my wife as she struggled with depression, and I was the main caregiver of my dad who was fighting cancer. My father and I were very close, and I didn't even allow the thought of him not being around to enter my mind until that was the reality. Benjamin was almost six months old when my dad passed away. Thanks to my new little best friend, I didn't dwell on my loss. Instead, I focused on being as great a father to him as the father I was lucky enough to have.

Benjamin was our first child, so it's safe to say none of us knew what we were doing. We did our best to guide him while he tried to raise us with at least as much assertiveness. When he was born, I immediately felt that protective parental love, but something seemed to be missing. Shouldn't I have also felt that intense love and desire to always be around this little person? Instead, it seemed like I was just beginning to get to know someone, and I felt guilty for not immediately being infatuated with him. "Aren't parents supposed to love every single thing about their new babies?" I thought.

Well, as Benjamin developed into the unique person he is and showed us more of his personality, I did fall in love with it. Just seeing him filled with joy will brighten my whole day, and that makes playing with him so addicting. I was/am so head over heels in love with him that I didn't realize some of his quirks may have been outside the range of the "Every child is different." phrase I read so often in parenting books. I thought we just lucked out that our baby had some characteristics that made our lives a lot easier as new parents. He could entertain himself for hours, and wouldn't ask for more attention than we already offered. He rarely needed to express what he wanted because the routine was so similar every day that we knew what he wanted based on the time he began asking for something. And he never put anything into his mouth unless we coaxed him enough that he'd finally try just to see what the big deal was. That last one was especially nice. Our new baby boy wants to taste everything in his field of vision. It's like he thinks the main function of his limbs are to get his mouth closer to the next object he wants to explore orally.

We did notice that Benjamin's speech wasn't coming along at the same rate as his cousin's at that age. We spoke two languages pretty regularly at home though, and we'd heard that can slow kids down a bit when learning to communicate. He also became a very picky eater when he graduated from the baby food in jars. I just figured most kids were picky like that initially. My wife began to wonder why it was so difficult to get Benjamin to conform to some of the rules we grew up with like "You eat what was prepared for dinner, or you don't eat." Benjamin would choose to not eat. We even offered him all the foods he loved if he'd just take one bite of our dinner. He could spit that bite out if he didn't like it. We just wanted him to try the food. But he would hold his ground for hours, and went to bed without dinner the few times we tried that.

When he was about two and a half, Benjamin started to attend his first preschool. About a month or so later, one of his teachers asked us to meet and discuss some things about our son. She told us that Benjamin seemed different than the other children; that he showed some signs of possibly being autistic. He was/is obsessed with space and our solar system. He'd find a way to turn every activity into flying a rocket ship or putting the planets in order of their orbits around the sun. I thought it was cool that he knew more about the planets at age 2 than I did after graduating high school (I didn't know about the other dwarf planets like Pluto, but I did know their order, relative size, and some facts about each planet. It's really impressive how much he knows.) I figured it couldn't hurt to have Benjamin evaluated even though I knew he was a neurotypical kid with some strange habits. So that kind and caring teacher directed us to the organization we could contact to have him evaluated. I can't be more grateful to that wonderful person for her help.

Benjamin's evaluation went well, and he demonstrated his strengths that had me convinced he couldn't have autism. The group of therapists on the evaluation team retired to another room to discuss what they'd observed, and met with us about an hour later. When we all sat down, one of the first statements was, "Your son is autistic." I was shocked, but not negatively. I just wondered how they could be so certain when I thought I was certain of the contrary. I knew very little about autism beyond the stereotypes exposed to me, and a little info from some light research I'd done after hearing his teacher's concerns. I felt safe to assume they were right, and could educate me on why I was so blind to this diagnosis. They explained their reasoning very well, and gave their suggestions for what help we should seek for our son.

My first major concern was how I could make sure Benjamin knew that he could still accomplish anything he wanted. He may have to work harder at certain tasks, but he could do at least as much as anyone else. So I wondered who should know and who shouldn't. Who would be mature enough to realize his disability didn't mean he was any less intelligent? I was afraid of how those who knew might influence him. Would their treatment toward him make him place unnecessary mental limits on himself? I still don't know the answers to these questions, and it still concerns me, but my focus overall has changed.

We were able to get Benjamin started right away with the therapies suggested. I still had some lingering doubts that Benjamin may have been misdiagnosed, but I figured the therapies would only be helpful anyway (I no longer doubt that he is autistic after learning more and watching other independent evaluation teams confirm his diagnosis with as much certainty as the first.). Because of my initial doubt, I don't know if I would've got him started with his therapies right away if it meant we had to pay the entire deductible on our medical insurance. Life is funny though, and gives us those surprises when they're least expected.

My income was pretty low while I was helping my dad, but I paid for as much medical insurance as we could afford. I was self employed, so we had a private plan. In his will, my dad asked me to be the personal representative of his estate. I asked for no salary, and it took a lot more time than I'd imagined. My income remained low while I managed his estate. At the same time, I became the main caregiver of my mother when she was diagnosed with terminal cancer (She forced me to take a salary as the personal representative of her estate.). I did inherit some money from my dad, and used it to cover our expenses as we earned too little. I planned to use our savings to pay our medical insurance as well, but my low income qualified Benjamin for Medicaid through the Healthcare Marketplace (Thanks Obama. Not sarcastically, I really mean it. Thank you so much!).

I feel so embarrassed that we use government assistance, but if it weren't for that we may not have started Benjamin with his therapies when we did. I'm completely convinced that getting him started right away was the best for him. We wouldn't have narrowed our search to therapists who accepted Medicaid either. Because of our need for assistance which makes me feel ashamed, we've had the privilege to meet some of the most amazing people who have helped us and our son so much. It's been another of those great surprises that spawned from a situation I thought was entirely negative.

The kindness and altruism demonstrated by multiple people on Benjamin's team have blown me away. In my experience, Montana generally has a high density of kind people, but these ones are on the same level as Jessica Livingston [1], Grace Gary [2], and Sam Altman [3]. I'm sorry to call out those specific people as examples if it makes them feel uneasy (and I'm sorry for those I haven't named who deserve to be listed along with them). Based on my experiences and what I know of them, they stand out even among other incredible people. If we're the average of those we spend the most time with, they are the ones who boost the average of those lucky enough to be around them. That's how I feel about those people on Benjamin's team too. I'm both humbled and inspired by them.

As I watched Benjamin improve and have so much fun doing it, I started to feel that my son was lucky to be born autistic. It seemed awkward to think we were lucky for our son's disability. At first, I felt lucky that Benjamin (and my wife and I) could receive support and guidance from his amazing team of therapists and teachers while neurotypical kids and their parents wouldn't get that privilege. But as I saw Benjamin improving his weaknesses, I felt lucky for his gift. It no longer seemed like a disability. In the same sense that someone who learns a second language and culture becomes more enlightened, those with autism (who already have beautiful brains) get to learn an entirely different language and culture which developed from different brain function.

My initial thoughts about his disability were wrong too. After his diagnosis, it seemed like our lives went from taking care of Benjamin to taking care of autistic Benjamin. I was tripped up by the negative stereotypes in my head. Benjamin hadn't changed at all though. He's the same wonderful little boy, and his autism is an important part of what makes me love him so intensely. It was us, his parents, who changed.

Our fears of future struggles he'll have in the societies of elementary, secondary school, and beyond have been enhanced, but a positive consequence of his diagnosis is that we now have an explanation for those habits and differences we didn't understand before. With our new understanding, we can seek out the many great sources of helpful information, and use them to help Benjamin overcome difficulties. I know he'll have to work harder to understand the foreign neurotypical culture which isn't intuitive for him, but that's much different than the disability I thought autism was before I learned more. If he remains as high-functioning as he already is and we can positively guide him as he chases his dreams, then I'm still convinced that his autism is more a gift than a disability.

While researching as much as I can find about autism, I've been especially drawn to information offered by people on the spectrum. I'm so grateful for those who've shared their perspectives. I still have a lot to learn, but I know a lot more about autism than I ever imagined I would. I only discovered the beauty of autism because I was directly affected by it. I'm ashamed I didn't know better before, and I wonder where else I'm ridiculously under-informed. How many other great causes, people, and organizations do I remain unaware of? I don't know a better way to discover them than to learn as much as I can as fast as I can about many different topics. Benjamin's diagnosis has opened my eyes and motivated me to seek the other not-so-hidden gems I have yet to learn about. I will definitely pay more attention to those amazing people promoting awareness for any cause in the future.

Maybe autism isn't a disability that has nor needs a cure. Perhaps in the future, a cure for autism will seem as absurd as a cure to a certain eye color. We don't know yet, and we get to watch and explore the frontier as more is discovered about this intriguing condition. I think those on the spectrum have brains that function properly but differently than neurotypicals, and that more awareness and acceptance of difference should take at least as much priority as searching for a cure.

The explicit and implicit rules that govern our society were formed by a supermajority of neurotypical people. Therefore, it's obvious that some parts of that society would be difficult for a person who isn't neurotypical to infer or understand. Autism is only labeled a disability within our society today. Who knows how it may be labeled in the future? I'm excited to guide Benjamin as he explores our neurotypical world. As I continue to learn about and explore Benjamin's world, I imagine the tables are turned and I'm the one working to understand what isn't intuitive. I hope he'll continue to guide me in ways that are as fun as it's been so far.

Thank you, Benjamin, for all of the great surprises you've already added to my life. I hope many more will happen in yours to brighten your journey. I love you so much!


Notes:
A lot of info, interviews, talks, etc. can easily be found online for each of the three exceptional people I named. The following notes from my brief personal experiences with each person are meant to explain why those people demonstrated even more kindness and altruism than I'd inferred about them from what I'd learned online.

[1] I saw Jessica at a dinner before Startup School 2014. She was surrounded by a group of people eager to speak with her. The group was mostly females, and I thought to myself, "She's such a huge inspiration to female founders. I shouldn't add to the chaos just to express my gratitude. I'll leave one more spot open in case a shy founder who idolizes her hasn't had a chance to talk with her yet." I don't know if I made the right choice. I really am grateful for her kindness, for everything I've learned from her, and for what she's directly and indirectly caused as a co-founder of YC. I remember her demeanor at that dinner. She had such a happy and welcoming look as she moved about with the swarm of people surrounding her, and she interacted with each person with such kindness and sincerity. It was incredible to watch, and she's truly inspiring.

[2] I emailed a question to Grace at Watsi once. Her response was brief, and it was so kind that it really made my day. I've received a couple other email responses from her since, and all of them were just as kind and uplifting. Just being a co-founder of Watsi and giving so much effort to help those who need it already shows her wonderful altruistic spirit. On top of that, her great personality and kindness elevate her above other great people.

[3] I met Sam briefly at Startup School 2014. It's obvious how busy he is, if not just from watching him, then by looking at all he's accomplished in the time he's done it. I interrupted him while he was reading his phone, and thanked him for making his Stanford startup class free online. He wasn't overtly irritated by the interruption, and showed similar kindness and sincerity as Jessica Livingston had. He was really awesome, and offered me more time than I expected telling me what was planned for the next lecture. Afterward, he continued reading his phone as he walked to a chair. Then, he sat and talked with another founder who I presume had asked for some of his time during the break to talk about his startup. Sam is an incredible, selfless person who not only works hard to enable founders to improve our world, but also shows so much genuine care for people who are trying to build something cool regardless of their backgrounds.

2 responses
I came across your story from Reddit. This last friday my daughter was diagnosed as moderate in the spectrum of being 'autistic' I still don't believe it and I am shackled rationally/emotionally from the diagnosis in some sort of weird shock. I literally have no idea what to do. My daughter is only 2. She doesn't verbalize much. I was told I didn't start talking till I was 3. Now I'm told since she doesn't talk and is not easily engageable she is autistic. As of right now though I'm more concerned because she's only 2 years old isn't that a little young?
Please understand that I'm not an expert and this is my opinion. Hopefully it'll be helpful. I can relate so strongly with your feelings that I can't resist responding. First, you probably know your daughter far better than anyone who suggested an evaluation or those on the team who diagnosed her with ASD. She may not be on the spectrum and was misdiagnosed. Don't use too much mental bandwidth trying to prove if she's autistic or not right now. Instead, learn the specifics of why the team gave that diagnosis. I presume they've evaluated enough children to make definite decisions based on clear observations. Did the team or organization that gave the diagnosis also provide suggested treatments to help your daughter improve her weaknesses? If so, then decide for yourself if those treatments will be helpful to her regardless of if she's neurotypical or autistic. If they didn't suggest your next steps, then ask the team to direct you to the resources you should be in contact with. I believe most states (if you're in the US) have a government office that will help your family out with your daughter's needs as she's under 3. In Montana it's called the Child Development Center. Your daughter is only 2. If she does have autism, then your family is lucky to have found out so early. If not, the treatments can still be a positive way to help her catch up with her peers in certain areas. It's been such a joy, not just watching our son improve, but to watch him have so much fun doing it. Before we knew of the resources suggested by the team who diagnosed him with ASD, we tried many different parenting strategies we found online or in books to help him with his difficulties. The diagnosis gave us a better understanding and more tools to help him improve. Consider that the diagnosis may be right or wrong, but definitely investigate the reasons for it, and decide if the treatments suggested will help your daughter out right now. Focus on continuing to be the best parent you can be, and savor every moment with her. Each phase is a little different, but they all seem to have passed too quickly when looking back. If you have any other questions or just want to talk, feel free to email me at my first and last name separated by a period @gmail.com. I wish you and your family the very best!