Autism, Fatherhood, and the Things No One Wants to Say

This reflection was meant to come out in April as part of Autism Awareness/Acceptance Month. But the very experience of raising autistic children made it difficult to get all my thoughts out. I probably should have kept a chart documenting the many times I had to say stop, get down, don’t touch that, don’t eat that, stop jumping, you’re making too much noise, and countless other phrases while feeling incredibly frustrated with boys who often seem determined not to listen at all. I hope this reflection captures the tension between sustained thought and the abrupt interruptions and chaos that so often fracture it. 

I’ve seen parents smiling while their neurodivergent children are making endless noise and tearing through the house. I understand that once you become the parent of autistic children, entire sections of your former life quietly collapse. Certain hobbies become difficult to maintain. Certain social environments become almost inaccessible. Silence itself becomes a luxury. Even something as simple as sitting through a quiet dinner, watching a movie uninterrupted, or having a long conversation without hypervigilance starts to feel like a memory from another lifetime.

Your life slowly reorganizes itself around regulation, routines, sensory concerns, therapy schedules, monitoring behaviors, and preparing for meltdowns before they happen. People often speak about the sacrifices of parenthood generally. This feels different. It is the restructuring of existence itself around needs that go beyond what you are familiar with. 

Sounding pessimistic? Let me say this clearly. I love my boys to death and put every ounce of effort into making them happy. But I want this reflection to highlight the darker sides of this parenting experience. The side where the supportive voices disappear and you are left in situations where the noise does not stop and no approach seems to work. That is when it hits you that no matter how much people attempt to clean up this experience and describe it in ways that make it seem rosy and centered around “superpowers,” there are parts of it that simply are not.

Modern society can seem to be uncomfortable with honest language regarding the experience of parents in this area. We can’t say anything without being dismissed or having our experience minimized. Everything now must be reframed into empowerment, hidden beneath therapeutic language, or transformed into something inspirational and easily consumable. Autism is often discussed in ways that allow people to feel compassionate without forcing them to confront what many families are actually carrying behind closed doors. 

I do not think there is anything good about autism. It robs parents of aspects of the relationship they imagined having with their children, and it robs many children of better futures. Yes, I did say better futures. Loving my children deeply and acknowledging the difficulties of autism are not contradictions. They exist together. They exist within that tension. 

Many who share autism stories do so in the hope that the world, through greater awareness, becomes more accommodating toward different kinds of people. That is necessary. However, most of the world will not adapt. Most people do not care. And if that sounds harsh, simply look at the level of funding directed toward people with developmental disabilities. Or look closer to home and observe how certain groups are discussed publicly, including how a former president running for office again was able to say that Haitians were “eating the dogs and eating the cats” without voters fleeing from him like a plague. Moments like that remind me how fragile public compassion actually is. Its the same people that we are expecting to be kind to our children?

I’ve often said that I’m a realist. That does not mean hopelessness. It means refusing to lie to myself in order to make difficult realities easier to emotionally process. It means understanding that love does not erase limitations. It means acknowledging that while awareness matters, awareness alone does not suddenly transform society into a compassionate place.

But realism does not remove the responsibility to educate, advocate, and increase awareness wherever possible. Maybe, and I believe this is true,  I’ve been given a responsibility to contribute to that awareness. While I am somewhat private, I still live in the world. Questions, conversations, assumptions, and suggestions inevitably come from people who do not fully understand what my situation is.

I never thought this would happen. It never crossed my mind for even a second despite working in the developmental disabilities field for years. It simply was not something I heard people discuss in the context of having children. So when I noticed that my firstborn (AP from here on out) was not progressing at the pace expected, I immediately knew something was wrong.

Thinking back to when concerns were first shared with the pediatrician, I initially interpreted his seemingly nonchalant demeanor as a lack of concern. I remember speaking to a handful of people, very selectively because this was not something I wanted widely known, and receiving similar reactions. People were not saying much. Nobody was giving me anything hopeful to hold onto. I wanted someone to tell me I was wrong but I didn’t know that I wanted that.

I now realize that my interpretation of the doctor’s demeanor and my dissatisfaction with the reactions of others had more to do with the shock I was experiencing than anything else. At the time, I simply could not identify it as shock. The pediatrician was not a psychologist, and it would have been deeply unprofessional for him to say much beyond directing us toward specialists. Had this not been my child, I probably would not have gone down that line of thinking myself.

Working in the developmental disabilities field also meant that I already understood certain realities before entering them as a parent. I reflected on that in a previous article entitled The Crisis in Developmental Disability Care. I understood the staffing shortages, the underfunding, the exhaustion that exists within systems of care, and the fragility of structures that many families are forced to depend on for support. Experiencing that reality professionally is one thing. Experiencing it as the father of children who may one day depend heavily on those same systems is something entirely different.

The pediatrician referred us to specialists connected with his agency. As the months passed, the time eventually came when AP received his diagnosis and I had to begin settling into the reality of what was happening. Mind you, my second son (GD) was already on his way while all of this was unfolding. While it was never the plan to have them so close in age, I have often concluded that maybe it was meant to happen that way.  I imagine that there would of been considerable concerns about having another child with the first one being autistic. 

When I first found out that AP was on the way, I was so excited that I barely knew what to do with myself. In seconds you go from being a non-father to a father. Wow! I’m somebody’s father! Technically it happens before you even know, since the test results are simply informing you of what has already taken place. But mentally, the moment you find out is when fatherhood begins.

Growing up, I always imagined the kinds of things I would share with my children. Conversations about hobbies, careers, interests, and life itself. I’m a fitness enthusiast with years of experience in weightlifting and cardio. I imagined laying out progress charts and discussing whatever new developments existed in that space.

Having two boys even made me imagine something that some of you may roll your eyes at. One becoming a New Testament specialist and the other focusing on the Old Testament. After all, they are named after biblical figures. It would have been even funnier if the one named after the Old Testament figure became the New Testament scholar and vice versa.

But even beyond that, I looked forward to discussing careers, strengths, ambitions, and possibilities with them. Just watching their minds work through why one path interested them more than another would have been meaningful to me.

All of this may still happen. The ABA, OT, and speech services they have received at these early ages have significantly contributed to their development. I remain deeply thankful to Kat, Denise, Winnet, Martine, and Josianne. These specialists treated the boys with tremendous care and we truly could not have asked for better people. We were and are blessed. 

Despite these early interventions, things may still unfold in ways where they require more assistance in life than the average person. I don’t know the future. That possibility leaves them vulnerable to the mercy, or lack thereof, of future caretakers. I carry that reality with me constantly because I know I am not eternal. Parents already worry about their children when they are away from them. Imagine carrying that concern while also thinking about a future where your child may need considerable assistance long after you are gone.

Imagine constantly wondering whether future caregivers will be patient, whether people will take advantage of them, whether they will be spoken to respectfully, whether they will be lonely, or whether they will simply become another case managed by exhausted systems and underpaid workers. Parents naturally worry about what happens to their children after they are gone. Autism intensifies those fears into something heavier and far more existential.

This exists with neurotypical children as well, but the concern becomes heavier with neurodivergent children (if that is possible?). That is why I sometimes look at how autism is publicly depicted and wonder why these realities are often absent from the conversation. Maybe some parents choose to focus primarily on the joyful moments they are experiencing now. That is understandable. It could be a coping mechanism. We all do it to some degree. I do not imagine this experience is easy for them either regardless of what they choose to share publicly.

But I wanted this side to be spoken just as loudly.

This reflection is not meant to erase the joy, affection, humor, progress, and meaning that my boys have brought into my life. Nor is it meant to discourage parents of neurodivergent children. It is simply an attempt at honesty. There are fathers and mothers quietly carrying fears they often feel pressured not to express publicly. There are parents exhausted beyond language while simultaneously loving their children with every part of themselves. Tension. 

So while awareness matters, I believe realism matters too. Honest language allows people to feel seen.

It’s a hell of a world that we live in. It’s a hell of a future waiting for us all.