Adventures in High-Functioning Autism Behind the Wheel

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This article was contributed by Nancy Nestor, ASNC Autism Resource Specialist.

How do you know what your child is capable of? For the past 13 years, since my son was diagnosed with high-functioning autism, my husband and I have asked ourselves that question repeatedly. My son has always been a kid who has taken an active part in choosing his own path. As much as possible, my husband and I have tried to allow him that independence, but more often than not, we have discovered a truth. Some goals are attainable, some take extra teaching and time, and other goals may be off the table for a long time, or for good. Getting a driver’s license could be one of those things.

A few years ago, my son watched a childhood friend, who lives next door, get his license. That set him on a mission to do the same thing. At that point, we really were not sure if driving was a reasonable goal for him. He could ride a bike and follow the rules to ride on the street. With a lot of work, the visual perception problems we had seen in the past had improved to the point where they were less of an issue, so he was able to maneuver his bike without hitting things. He had worked very hard to improve his reading, but were his skills good enough for him to get his license?

We told him there were many things that would have to be done before we could consider letting him drive. He had to show us he could handle driving off-road first, which meant driving the riding mower after he mastered the push mower. Using visual signs as cues, we helped him through that step, which took almost two years. This was a funny story in itself. I am sure pilots flying into Charlotte Douglas thought a drunk was loose on a riding mower in the huge field our church owns as my son drove randomly around the field while following the curvy pattern I had set up for him. During that time, he also practiced driving go carts and four-wheelers, which he thoroughly enjoyed.

In school, he signed up for the book part of driver’s education and passed it. That was when things started to get interesting and we hit what we thought was a real roadblock. Out of the blue, I got a phone call from Sergeant “Smith” from the DMV, who immediately started asking me questions about my son: What is his diagnosis? What medication is he taking? Is he mentally ill?

I am sure there was blue smoke coming from the roof of our house! I was livid! How could a stranger call me and ask such personal questions? I did not pass up the opportunity to let Sergeant “Smith” know that I found his questions demeaning. How dare he question my judgment as a parent! He did not know my son. How dare he think my son was not capable of driving? How dare he call with such personal questions? How did I even know he was a police officer anyway?

This reaction did not faze the sergeant. He simply told me if I wanted my son to get his permit, his pediatrician would have to fill out a medical form. Still pretty angry, I asked him whether the form was because he had autism, and he said that was not the case. Apparently, a few days before in driver’s ed class, the DMV officer had come to do vision screenings on the students and gave them a form to fill out. On the form, a question asked whether the student had ever had a seizure. Being accurate about his health, my son said yes. It is true, he had a seizure when he was six and took anti-seizure medication for years. I told Sergeant “Smith” that I was sorry for being so angry, but it made sense that there would be a protocol for health issues which might affect driving safely. He confirmed our address and told me a form would be sent to our home, which would have to be filled out and sent back to the DMV in Raleigh within a month. It would have been nice to know ahead of time that I would be getting a phone call from the DMV, but I guess that is one of those unexpected pleasures of life.

The form came within a week, and we got it filled out in time. My son had passed a hurdle, and we were on our way to the next adventure. My son’s doctor knew driving would be stressful and he would do better if he could receive one-on-one instruction. He recommended a company that specialized in teaching anxious drivers.

My son completed the required hours and the instructor thought he was capable of driving, but advised us to give him plenty of time and buy a passenger-side brake so we could be safe while he learned to master driving. On the third try, he got his permit. He has been driving for almost a year now, following the rules of his permit. He can only drive with a parent in the passenger seat, and he must fulfill at least 100 hours of driving before he can get his license. He has more than fulfilled his 100-hour commitment and we rarely use the brake, but we are in no hurry to let him drive alone. The DMV personnel told us that we can renew his permit as many times as we want. He can drive with his permit for years until he can handle any situation that might come his way. My son will get his license in time, but it will be when he is ready, and he is happy now to drive with his permit.

By choosing to let him drive, we have had to consider other factors as well, such as guardianship. North Carolina law states that when parents acquire guardianship for their adult child, they must declare their child incompetent. There are levels of guardianship, but regardless of the levels, if someone acquires guardianship over their child at any level, the clerk of court for the county must notify the DMV, and the person under guardianship is no longer permitted to drive.

Because of my son’s challenges with decision-making, we will not seek guardianship, but will use other legal methods, such as a durable power of attorney and a medical power of attorney to provide him the support he needs. Of course, over time if we see that he is not capable of becoming a safe, independent driver, then having a driver’s license will be something we will not consider. It may be an unattainable goal for him in the long run, but in the meantime, we will celebrate the progress made.

If you need advice on making decisions about your child’s independence, please contact your regional Autism Resource Specialist. Find one here.

Nancy Nestor can be contacted at nnestor@autismsociety-nc.org or 704-894-9678.

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2 Responses

  1. Great article Nancy. Once again congrats to you and Paul on that accomplish. Alex did the classroom part in school but I am not sure if he is ready for the driving part. This give me a lot of encouragement. Hope I can see you sometime in the near future so you can give me some tips 🙂

  2. Thank you so much for this story! My daughter is 18 and getting her permit is our next goal. Thank you for adding the info about guardianship, this is something that I was struggling with, as she is high functioning but not incompetent! I was only going to try for partial guardianship but the incompetent qoute really made me second guess the whole thing. I know will look into power of attorney! Thanks again for adding that in your story!

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