Hi Daily Feelers,
It’s Friday. It’s my turn to spill it.
What to share this month? This question has been on my mind for a week now. So, I thought about what’s been going on in my world and this is what I want to share.
My son IS autistic. To be politically correct, my son HAS autism. This was the correction I’ve been given a few times over the past few weeks from the educators and therapists that have circulated our home. At first, I would respond, “I’m sorry” but by the 3rd time, I had to ask “Oh. What’s wrong with saying he IS autistic?” The response was always the same. They would say, “We don’t want the kids to feel like THEY are their diagnosis. It’s just something they have, not who they are.”
Record scratch. Wait, what? As this shun echoed in my mind, I just kept feeling lost. What did they mean, being on the spectrum is something they HAVE, not who they are? I couldn’t quite buy it. I thought about what it means to “have” something vs. being something? To have something implies there are alternative options, a symptom that’s treatable perhaps, or even something we just unlearn. My initial emotion was sadness. I never, ever considered autism as a negative trait in my son. Different, absolutely; but to dissociate it as a defect of some kind seemed to say I would change him if I could.
Let me be clear. I have no desire to cure my son of autism. He sees a world so much more detailed and colorful than me that I’m honestly a tad jealous! Let me explain. If you sit with Ollie one on one, he’ll explain to you the complex architectural design of the Statue of Liberty, how they recreated it for Ghostbusters 1, and how France gave it to us as a gift just because he thinks everyone should know. His favorite book is the dictionary. Yep. Favorite book. Dictionary. I’m not kidding!!! He sits and makes lists of new words he “finds interesting” while scrolling through different sections. He is constantly coming up with drawings of new inventions that would “save the planet”. Literally, that’s what he says.
I am no expert on autism, but I do know that my son is experiencing life on a much more elevated level than I was at 7. He’s so eager to participate in THIS world just as he is. His frustrations often happen when he is required to tone down his abilities to comply with someone else’s agenda. If given his safety boundaries, then set out to explore and acquire information, he absorbs at a depth unfathomable to his mainstream peers.
So to me, his diagnosis is simply a label to help those NOT on the spectrum explain their inability to connect with my unique little human. He IS different. He is also incredibly able, highly coherent, and always wanting to connect. Therapy of any kind is really to help the patient with the reality they are forced to live in. Ollie’s treatments are just that.
After I had this crazy thought, I was hesitant to write about this stigma. People are so quick to defend their politically correct word choices. I didn’t want to defy social norms with my radical ideology without having the perspective of another in my same shoes first. I called Janis, our leader at The Daily Feels. She, too, has a child on the spectrum and she’s blogged about it often so I knew she’d be straight with me. To my relief, she was quick to validate my perspective and added a good point that no one knows their child better than a parent. How we choose to address our diagnosis, of anything, is a personal choice and she liked the way we choose to address ours.
I do not want to soften the stigma around ASD. I want to eradicate it. I want my son to focus on his capabilities, not his disabilities, just like everyone else. I don’t want him to be discouraged by the things that are hard. I don’t want him to HAVE something he can blame for all the things that are hard. I want him to own it, like a badge of honor. I want him to trust he can always find a way. He can ask for help if he’s unsure of the “right” way. I don’t want him to think that I would ever want him to change if that was an option. I love him. All of him. Just as God made him.
So, we don’t sugarcoat his diagnosis. We don’t hide it. We study our behavior. We study others too. We develop empathy through these studies which encourages him to accept vulnerability, not run from it. We face the hard stuff. We speak OUR truths, then humbly wait for the rebuttal from outside that tells us if our assumptions align with their beliefs. We accept that not everyone will make space for us at the table. If they don’t, we make our own table that’s super long so anyone else facing the same adversity has an open seat somewhere safe. I say we because I need him to know he’s not alone. As long as I’m breathing, I’ve got his back, but I won’t enable him. Life is hard. People are cruel. We can’t go through life never expecting anyone to question our choices. We have to find strength from within to stand up for ourselves but humble enough to change if our behavior causes harm to others. Don’t get me wrong. I don’t want my son to be a genius. I’m not a Tiger Mom. I’m trying to make sure all of his traits have a time and place to develop simultaneously. He is a sponge on steroids. It’s my job as a parent to make sure he’s absorbing healthy, positive behaviors.
Most don’t see it, but children on the spectrum work so hard. After 30hrs of school, they put in another 15-20hrs a week trying to learn healthy boundaries and vulnerability. But if you ever watch an ABA Therapy session, the kids really have to unlearn their existing behaviors often seen as odd or erratic to relearn the acceptable ones. It’s super hard. Most adults would cave in a few weeks. Not my son. He gets mad. He asks for breaks and days off. I get it. We all need alone time and quiet spaces to just be. Overall, he appreciates learning that there’s a time and place for everything. Ollie has joy when he finally “gets it” and is learning to channel his eccentric view of the world into art, music, film making, and inventions. It’s really cool to watch him find a lane he can go as fast as he wants without any outside forces telling him to conform or comply. It’s even more amazing to watch him bond with his teachers/peers and be empathetic and nurturing to their interests.
I guess I’ll leave you with this…
In our house, we don’t mind being labeled by outsiders. If that helps you understand our existence, knock yourself out. We prefer to focus on finding every unique, awesome thing we can do and sharing it in a positive way with the world. Some things are more challenging than others, but we aren’t afraid to invest in our growth.
I truly believe that there are a lot more people out there who are undiagnosed. For whatever reason, it’s taken us until the 1980’s to even start to change the way we view someone on the spectrum. It still changes year by year. No matter what, Ollie will be on the spectrum for life. You cannot cure it. I don’t believe a vaccine caused it. I do think my son, and all special needs children, are gifts from god. We may not be able to explain how or why some children are born “different”, but I can contest that my son has taught me patience, resilience, humility, and a thousand more lessons I’d never known as deeply and fully as I do now. He IS autistic and he’s perfect in my eyes. If that offends you, you might want to come to our ABA sessions. We can help you learn to cope and compromise. It’s kinda our thing now.
Blessed,
The Phoenix
JB McCann has worked in “The Biz” for almost a decade, yet she’s somehow managed to keep her feet firmly on the ground. Her altruistic spirit aims to evoke your Inner Phoenix and encourage readers to take the difficult leaps in life, so you can continue to grow.