A Raising Autism Blog
I’m an optimist by nature, at least most of the time. I have believed fervently that every problem can be solved. I base this belief on the assumption that support resources of any kind— therapeutic models, analysis, occupational assistance, studies, research— are available to provide encouragement, problem-solving and renewal. With my daughter in a continual downward tumble, I began to think otherwise.
Indeed, having autistic children has revealed to me how one-sided, resistant to change and unforgiving American society is. Look at the typical arena-style classroom used for many freshmen introductory classes. When I went to college, I first attended an enormous state school, My biology 101 course had over 200 students in a room with blowing fans for the late summer heat, flickering fluorescent lights and a barely visible green chalkboard onto which my professor jotted relevant points. The white writing was hard to read if you grabbed an unfortunate seat too far away, a frequent occurrence if running from one class to another didn’t afford you enough time to choose a better seat. When my younger daughter went to college at a small, high-price, private university, I expected modern, air-conditioned, well lit learning facilities. That’s not what my daughter and I found. The old rooms lacked progress on all levels.
Now, imagine a sensory-sensitive autistic student in such a classroom. The lights buzz and flicker. The AC system turns on and off intermittently blowing frigid air or blowing nothing at all. The rotating fan clicks as it swings side to side. The seating rows, like a performing arts center’s, are too long. Late students inevitably have to climb over knees, backpacks and scribbling students to reach the open middle seats. Once you’re situated in the dreaded seat, you are locked in, unable to get out. The arms of students on both sides brush against you. Someone coughs or sneezes. The teacher is a busy ant at the bottom of the lecture room’s incline. His handwriting is messy and unreadable on the over-used chalkboard.
Circumstances like these are hard enough for neurotypical students. Through the lens of neurodivergence, however, this environment becomes a horror show. Too much noise, too many bodies, too many smells. Too little light, no space, too few opportunities to connect with the instruction. This is the environment that compelled my daughter to crawl into the safe, dark, sensory deprived cage she had created underneath her bed.
I hear the old-timers. “They have to learn to function in the world as it is,” they say. My question? Why? Why do they have to?
Our American society is a privileged, doddering, old, white man, raised long before the computer age, always used to its place, accustomed to others changing for its old-fashioned perspectives and limitless selfishness. It has triumphed more than shifted, as the previous decade has taught us. Progress erodes with the feckless decision of one fool, erasing the hard-fought accommodations rebels and brave ones achieved.
My daughter had entered a period that wouldn’t work for her: adulthood. Some kids can “fake it until they make it.” Good on them. For those who can’t pretend, the self-esteem crumbles. Self-belief splinters into millions of fragments unable to be reassembled.
We are now two years past this moment. In spite of medication, therapy and lots of family support, she still has not recovered.
She’s not alone. Only 20% of autistic college students graduate in 5 years. This means that up to 80% of autistic young adults don’t go to or finish college. More than one study has reached similar conclusions, so I won’t list them here. While number can vary, the research suggests that 20-39% of autistic college students complete college compared to 52-60% of neurotypical students. The studies point out that lack of ability does not drive this abysmal statistic for autistic students. Rather, the lack of autism-specific support programs; mentoring and coaching; executive-function coaching; and quieter housing options cause the gap. In fact, universities with autism-support programs often report retention rates similar to non-autistic students.
The talent loss of these numbers astound me. Autistics are often very intelligent and creative. They can be strong contributors to the workforce, especially in detail-oriented areas. They also excel at STEM. Rather than tap this trove, our society seems to be content with the loss. This is more evident now than ever with the misguided direction of RFK and the Trump administration.
Given these stats, perhaps my daughter’s experience is more typical than not. The optimist in me, however, won’t let me give up the belief that we can triumph over challenges. I’m looking for the magic to make it happen. Perhaps you, dear reader, know one. Please share.
I would love to hear from you, even if, especially if, you disagree. Perhaps we can bring back the American tradition of debate. Please like and share this blog with others. Subscribe to receive it by email and go directly to the Walk the Moon website (www.walk-the-moon.com) to peruse the full collection of articles and updates. You can email me from the Walk the Moon website as well.
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