Autism, Wandering, and “Handicapped Parking”

“Your only handicap is in your heart.”

ImageMy friend, who was recovering from hip surgery, found this note on the windshield of her car one evening. Apparently a passerby did not think she “looked disabled enough” to use a “handicapped parking” space, despite her clearly displayed parking permit.

(In an effort to use “person-first” language, the term “accessible parking” will replace “handicapped parking” for the rest of this article, although “handicapped/disabled parking” is still the most commonly used terminology, for better or for worse. That’s a topic for another blog!)

We have all seen people using accessible parking spaces that didn’t “look disabled”, and we have all judged them. Some don’t even have a permit displayed. We are quick to assume the offender is simply “too lazy” to walk a few extra feet. There is even a website dedicated to reporting people for “handicapped fraud” that encourages the use of Post-It notes on the windshields of alleged offenders:

ImageHowever, since the day my friend received that completely unwarranted, judgmental note on her car, I have tried to remind myself that things are not always as they seem.

Some people may not realize they are illegally parked due to inadequate marking of the parking space. Others may have a valid permit, but forgot to hang it in the window that day. Still others, like my friend, may have a severely limiting yet “invisible” disability. So even when I see people that seem to be illegally parked, or abusing the system with a parking permit they don’t appear to need, I don’t do angry confrontations or leave ugly notes on people’s windshields. I try to extend grace.

My son C and I do not “look disabled” either (at least I don’t think so). My doctor offered me a temporary accessible parking permit while I was pregnant with C. I was taking college classes at the time, and was physically unable to walk from the commuter parking lot to the classroom building due to early stages of preeclampsia. Later in my pregnancy I sprained my ankle for the umpteenth time in my life, did not seek medical treatment right away, and subsequently developed chronic ankle instability. At times it causes a severe stabbing pain in my foot with every step, and at times I’ve had to forsake my summer sandals for hiking boots to minimize pain and keep my ankle from randomly giving way.

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When my doctor ordered physical therapy, I asked if she would be willing to renew my accessible parking permit for another 6 months. Instead, she renewed it for 5 years. “Wow,” I thought to myself, “Five years? I thought she ordered physical therapy, not amputation!?!” I actually felt guilty (even though I had not asked for a 5-year pass), because I thought my doctor had done something dishonest as a “favor” to me. Several months later when I was discharged from PT and the pain was gone, I tucked the permit into my glove compartment and did not use it for a while. However, the pain continued to recur several times a year (after all, it is chronic), and I began to realize why my doctor had issued the pass for a longer term.

For the most part I only used the permit when I was actively experiencing pain, although I will confess to using it on a few occasions for simple convenience. The last time I did so, I came out of my local bank to find an elderly man struggling to walk across the parking lot with a cane, because I had taken the only accessible parking space for my own convenience. I felt horrible, and vowed to never use the permit again unless I was in severe pain.

Then C started bolting away from me in parking lots.

ImageBecause of his autism, C is fascinated with the spinning wheels on cars and tends to run toward traffic instead of avoiding it. I now use the parking permit any time C is with me alone in a large parking lot (e.g. mall or shopping center), unless there are non-designated parking spaces within a short distance from the building. Or unless he’s wearing Mr. Monkey and is in a particularly compliant mood.

“Wait. Isn’t that abusing the system?”

ImageAlthough my parking permit is designated for me, it is possible to obtain an accessible parking permit for a child or adult with autism who bolts/wanders. In 2011, the CDC created an ICD-9-CM diagnostic code for Wandering to be used in conjunction with codes for conditions such as Alzheimer’s, autism, or dementia. In such cases, wandering related to autism is considered to be a neurological condition that substantially impairs the person’s ability to walk long distances without physical assistance (to keep them from bolting away from safety). The use of this diagnostic code is not without controversy, however; several disability rights activist groups fear it will be used as justification for greater use of restraint, seclusion, and civil rights violations by various institutions and caregivers.

ImageLook out, Mr. Monkey! They’re after you!

Guidelines for obtaining an accessible parking permit vary by state, and the person’s doctor needs to write a prescription for the permit describing why there is a need. I don’t think C’s pediatrician would have any problem writing such a prescription, but because I already have a permit anyhow and C is with me most of the time (Helicopter Mom, you know), so far it has not been an issue. Personally, I have never encountered anyone who gave me a hard time about using my permit, although I’m sure it looks suspicious for a visibly able-bodied woman with a rambunctious young child to occupy an accessible space. Other families have not been so fortunate.

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I do try to avoid “van accessible” spaces designed for persons who use wheelchairs, because if it’s a choice between putting Mr. Monkey on C’s back and walking a few extra yards, or taking a parking space from a person using a wheelchair who truly has no where else to park… well…

I don’t consider us to be “disabled enough.”

Or at least we don’t need as much extra room to enter and exit the car. I am simply thankful that the accessible parking pass is one more tool in my arsenal to help keep C safe.

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