April is autism awareness month, so I wanted share about what it’s like to be the mother of my son Ethan, who happens to have autism. Aside from being Ethan’s mom, I also lead the special needs ministry at my church and spend time ministering to individuals with unique abilities. According to the CDC, autism affects 1 in 68 children in the US, more frequently affecting boys than girls. Autism is generally identified because of a lack of communication, a social understanding deficit, and restrictive or repetitive patterns in behavior. These symptoms are severe enough that they impair everyday living for someone on the spectrum. I think the most important thing to remember about someone with autism is that they process and experience the world in a different way. “Different not less” is a common phrase I’ve heard to describe an individual with autism.
Warning: What I’m sharing in this blog series is personal and prayerfully considered. I recognize that this is not a description of every person with autism. I am simply writing to share a snapshot of how my family has been affected by autism. In these posts, I’ve described various areas of our life with the goal of raising awareness and understanding as I share from my own experience as Ethan’s mother.
It’s been a blessing to see God use my son, not in spite of, but through and because of his diagnosis. Ethan continues to influence me every day, and I know that I am a better person because I’m his mother.
THE BOY WITH AUTISM IS NOT THE AUTISTIC BOY
Let me explain why these aren’t the same. The boy with autism is a boy first; autism doesn’t define him. Ethan is many things. He is helpful—he is the first to help with putting groceries away after our market trips. He is caring—I always need to remind him that his teacher will be ok when she takes a sick day. He is creative—he can play every part in his imaginative story that almost always takes place in space. He still lets me give him kisses, and he isn’t embarrassed when I tell him I love him as I drop him off at school. He is also considered to be on the autism spectrum. People-first language communicates that the person is more important than their disability. One would never describe someone as a broken-armed man, and in the same way you should say “person with special needs” or “child with unique abilities” rather than “special needs person” or “handicapped child.” When someone is described in a way that implies you see them for more than their diagnosis, it’s noticed.
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” – Psalm 139:14 NIV
Food has been a huge struggle for my son and something I’m constantly in prayer over. We’ve tried two programs to target Ethan’s struggles with food, and thus far haven’t seen much success. Ethan doesn’t struggle with food textures, for him it’s an issue of controlling what he consumes and a distorted sense of smell. I’ve heard things like, “he will eat when he’s hungry.” Although advice like this is well intentioned, it does not help when I watch my son sobbing as he tries to express that his tummy and head hurt because he’s hungry. Cheez-It’s from the Star Wars box is often all he eats. Any other type of food would be unimaginable because everything else smells bad to him. I’ve also been asked, “have you tried going gluten-free?” Honestly, I’m just grateful he’s willing to eat anything at all. Please don’t get me wrong, I will not give up trying new things. When I hear Ethan say, “more crackers please.” I thank God that he ate something that day and that Star Wars crackers exist at all. I’m prayerful that one day he will add more to his diet, and I’m grateful that God is truly what will sustain him. — Matthew 4:4
Marisa Altamirano is a passionate advocate for children who are uniquely abled. She serves as the director of the special needs ministry at VantagePoint Church. Marisa is a wife and mom to three wonderful boys, one of whom has autism.