We often hear the term “high-functioning autism” and immediately have a preconceived notion of what that means. As speech-language pathologists, we often see and hear about the struggles families who have a child with autism face, but can not truly put the day-to-day routines, behaviors, and needs in to words that will educate and open the eyes of all those who are not familiar with autism.
The following Facebook post by Amber Underhill touched the Burke Therapy Team in so many ways. Amber’s post about her daughter, Chandler, is a beautiful reminder that “high-functioning autism” is not something to be taken lightly. We cannot thank Amber enough for granting us the permission to share her intimate post and remind us all to be more cognizant of what we think the term “high functioning autism” means.
“I've heard the term 'high-functioning' a lot here lately, in reference to Chandler, and I hate it. Upon learning that she is autistic, people will say things like, 'well, at least she's high-functioning.' And I really feel like that term is misleading. You see that she is intelligent, and that she is verbal, (although she wasn't always), and assume that her life is devoid of struggles.
If you meet my child for a few minutes and label her as 'high-functioning', I implore you to come spend a day at our home.
You likely won't sleep, because Chandler rarely sleeps. Even after repeating her nighttime rituals time and again, she still has trouble turning off. And once she does, you'll have to be right there beside her to keep her from injuring herself when the night terrors start. You'll also be woken many times through the night to refill her vanilla milk, because she can't sleep without it, and reposition her "babies" so that they're all lined up where they are supposed to be.
Then you'll have to walk to the bakery in the morning for a strawberry sprinkles donut. She probably won't eat it, but since getting one once, almost two years ago, she has to have one every morning.
What she will actually want to eat is "chickens and taters". And that's what you'll need to fix for every meal, because its all she will eat. And if you happen to run out of dinosaur shaped chicken nuggets, the meltdown that will ensue is going to last for an hour or more. During that time, she will hurt herself, and you. She can no longer communicate during meltdowns, so whatever she says will be unintelligible. Things will be thrown, you'll be hit, kicked and bitten until you look like an old apple.
Don't forget all of the diaper changes that you'll be doing during this time as well, because she can't handle potty training.
Did I mention that you literally can't take your eyes off her for a minute? She's a wanderer, and escape artist. If you turn your back, she'll be gone. So if you're one of those humans that needs to eat or shower or use the restroom, you're out of luck.
When she's ready to play, LOOK OUT. When her cars won't line up just right, the stacks she's making fall over, or she can't complete her pattern, the meltdowns are going to start all over again.
Heaven forbid that you have to be with us at bath time, because she can't have her head or hair touched, so good luck washing it. And brushing her teeth requires at least two able-bodied adults, and generally involves lots of screaming, kicking, and possible loss of fingers.
And if you make it through the day, you just get to do it all over again! Being up all night, repeating her rituals and trying to soothe her to sleep.
Every day is like Groundhog Day. An endless loop of repetitive behaviors, frustration, sensory overload and meltdowns. PLEASE tell me again how 'at least she's high-functioning.' – Amber Gail Underhill
The Burke Therapy Family thanks Amber & Greg Underhill for sharing their post with us and letting us take a peek into their lives with beautiful Chandler.