Voicing the Unique Challenges of Autism: My Firsthand Perspective As A Dad

Those who follow me and Hi Blog on social media know that this past weekend, I took part in a panel discussion about autism with Jubilee. It was an honor to be asked and an unforgettable experience. When it’s posted, I will be sure to share the video. 

I flew across the country and met some truly amazing people. Featuring both those with autism and those who have people with autism in their lives, the gathering offered a diverse range of perspectives on a number of important topics that face us. Everyone had their own take and even those that would appear to be similar offered a unique point of view on a wide range of subjects. 

My goal there was the same as my goal always in these posts. I wanted to tell others about Lucas. My 12-year-old son has autism but it’s nothing like what most people assume when they hear it. Autism, to many, fits into a televised checklist of actions and attributes. They stumble at parties, solve medical mysteries, and then catch a touchdown at the prom. Everyone cheers and the person with autism has proven their worth by doing something substantial in the world of those who don’t have it. 

If my retelling of this Hollywood trope sounds a bit snarky, I apologize. It’s just that this doesn’t describe Lucas at all. He has no interest in sports and isn’t aware of what it means to have autism. My son’s special needs are quite substantial in areas of life that people tend to take for granted. There’s a fundamental lack of comprehension regarding many basic building blocks of our social world. His story’s happy ending doesn’t involve him doing something amazing in the world of others. He’s simply amazing in his.

jubilee

If I’m being honest, I worried about approaching this panel ahead of time. In my mind, I expected to be the odd man out. If the discussion turned to peer pressure or traditional social norms, how would I respond? That’s not Lucas. Autism doesn’t affect him in that way. In fact, autism makes those things fairly obsolete in his world. 

It turns out that it wasn’t too difficult. I said the same thing on their stage that I say here. I don’t offer anyone autism advice in my writing. That’s not what this blog is. Everyone is different and I’m conscious of that.

Most people reading this are nodding along because they know the old saying, “If you know one person with autism, you know one person with autism.” The truth, though, is that if you know one person in general, you know one person in general. It doesn’t matter if they have autism or not. 

To say otherwise would be to imply that every boy or girl is the same as another. The fact is that we’re all individuals. We all have our own approach to the world and an outlook that is uniquely ours. No one piece of advice works for all people, whether they have autism or not.

I have a few goals in writing these blogs and one is to expose people to a different take on autism than they might not otherwise know. Between being non-verbal and addressing the world in a different way than many others, my son can’t tell his story. He can’t even approve of his story. So I tell it for him. Even if he doesn’t fully understand what I’m doing, I give him the respect to tell him every step I take when sharing our journey with the world. 

The days leading to my 24-hour cross country round trip were spent with me counting down with Lucas.  

Three more days, little man. Daddy’s heading to L.A. I’m going to tell everyone about you and how great you are. Tell the world, right? Let ‘em know what’s up. What? Yes. I know you want more Pirate Booty. Just wait, pal. I’m driving.

Sometimes I get a smile. Sometimes I get ignored. Lucas doesn’t really “get” personal narratives or the idea behind telling his tale. That’s why I make it a priority to do him proud. If there’s even a small chance that he understands more than he’s letting on, I would never want him to be unhappy with the way he’s portrayed. I offer him the same respect I give my teenage daughter with my words here. They both deserve it. 

Lucas and sister

 

Another reason I write these blogs is to offer stories and insight from a parent who has been living with autism as a major part of my life since 2011. The things Lucas does and doesn’t do aren’t the point. The point is how we handle these struggles together and the ways we stay positive even during the most challenging days. The hope is that people reading can take some small piece and apply it to their own lives. Find something that we do and figure out if it would work in your own situation. 

Our situations, however, are not the same. I recognize that. Even those who could check each box by box side-by-side on Lucas’s list would find that their relationship with autism differs in substantial ways. Everyone’s different. There’s no “autism” advice that I can really give except to be patient, kind, compassionate, and understanding. But that’s more general life advice on how to deal with all people, not just those on the autism spectrum. 

This group made me feel welcome and took in my stories, as I learned from theirs. Much like the readers who share their own stories on social media or the comments below, there was a sense of openness, acceptance, and understanding that solidified the fact that those in the autism community share common human needs, even if they don’t share common traits.  

We are all people, and we all have the desire to be loved, heard, and understood. Whether a person is high functioning, non-verbal, or not even on the spectrum, they deserve respect and happiness. That’s the only “autism advice” you ever need to remember. 

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From Autism Awareness To Autism Acceptance To Autism Appreciation


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