Adult Autism in the Academy, Living with Epilepsy and Aphasia

For 40 years as a college instructor and then administrator, I dealt with students that had been diagnosed as autistic as young children. For 40 years, I had sympathy for autistic individuals. Today I believe I have empathy. Except for one student, the autistic students were  all hard-working individuals who did succeed in the normal collegiate definition of success. They all graduated with good to superior grades. The one exception dropped out of college and I lost track of that individual. I remember him because I spent hour after hour with his mother who was arguing for our college to give him a chance even though he almost failed out of high school.

Fifteen months ago I spent four weeks in a hospital due to the removal of a benign brain tumor that was discovered when a blood vessel in it burst creating many stroke like symptoms. While in the hospital, the TV had few daytime options other than soaps or health related features. Many of these features related to autism. As I watched these features daily, I noticed the similarities between the behavioral characteristics of autistic children and a number of the faculty members and administrators with whom I had dealt daily over the years. I began thinking, “Is there an adult form of autism besides the severe forms that are portrayed in movies and books?”

After my release from the hospital I was left with two problems, one much more serious than the other. With the help of physical therapy, I worked very hard to overcome the motor deficits that were a result of the stroke-like symptoms. I got to the point where I could walk unaided. I took the driver’s training for stroke victims and was given permission to drive. Nine months after the surgery, there were almost  no motor deficits left to indicate that I had experienced such a serious condition. However, the more serious problem remaining was that I was left with a mild case of aphasia, a condition that neurologists characterize as a defect or deficiency. Literally it means loss of words. The National Aphasia Association describes it as an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and may impair the ability to understand others. My aphasia manifests itself as an inability on occasion to follow conversations and either written or verbal directions. It also manifests itself in the inability or difficulty in finding the right word to use in a conversation or in my writing. I describe it by saying that “Words act more like cats than dogs. Dogs come to you when you call them; while cats come to you when they want to come.”

As months past, I kept coming back to that question, “Is there an adult form of autism?” In searching for more on autism within the academy, I found Tyler Cowen’s article, Autism as an Academic Paradigm in Chronicle of Higher Education. My first reaction to Cowen’s premise that autism has helped the academy was significant disagreement. Having spent 40 years fighting and cleaning up messes left by faculty and other administrators who demonstrated the behavioral characteristics used to define autism, I didn’t think the consequences were positive.  These behavioral patterns included a lack of communication, marked impairment in the ability to initiate or sustain a conversation with others without relying on stereotyped and repetitive use of language or idiosyncratic language fixation on the minutia, and the inflexible adherence to specific, nonfunctional routines or rituals. How often have I dealt with faculty or administrators who had what seemed to be an unhealthy preoccupation with one or more stereotyped and restricted patterns of interest that seemed to be abnormal either in intensity or focus? How often have I seen within the academy an apparently inflexible adherence to specific, nonfunctional routines or rituals?” When the faculty members or administrators are questioned about these routines or policies, the typical answer is “We’ve always done it this way.” However, there were two lines in the article that made me think maybe he does get it. The lines were “It’s not just ‘special needs’ students but also our valedictorian, our faculty members, and yes—sometimes—our administrators. That last sentence is not some kind of cheap laugh line about the many dysfunctional features of higher education.” It may not be a cheap laugh line. But there are many dysfunctional aspects of higher education engendered by the behavioral characteristics that are used to define autism.

So how can I now have empathy for the autistic? Nine months after my brain surgery, I had four grand mal seizures, which put me back in the hospital for a week.  The seizures were most likely the result of scar tissue remaining in my brain as a result of the surgery. The four seizures have left me classified as an epileptic. As much as I would like to get out from under this classification, I will always remain classified as an epileptic and most likely I will have to take anti-seizure medication for the remainder of my life. I am thankful that there are such things as anti-seizure medications. While I am taking these medications faithfully I can live an almost regular life. However, I must carry the stigma of being an epileptic and I must be under constant observation; hence the source of my empathy. Since not enough time has elapsed since my most recent grand mal seizure, I am not allowed to drive or operate heavy or complicated machinery. Should that prohibition related to complicated machinery include computers and blackberries? I have had to give up my blackberry because I couldn’t respond fast enough to the prompts, more likely a result of the aphasia rather than a result of epilepsy.  But if you take away my computer, you have taken away my best avenue of communication. Without the medications, I would be living in constant fear of another seizure. Even with the seizure medication, one EEG’s showed lots of spurious activity in my brain. The neurologist said that this could be a sign of the ongoing occurrence of many mini-seizures, or the prelude to another big seizure.

Because of my epilepsy and aphasia, I have had to retire from the academy. The aphasia has made it almost impossible for me to respond immediately and fully to complicated communications from others. I must study the communications preferably in written form so that I can slowly formulate a proper answer to them. Many times in academic circles you are not afforded the luxury of time to compose a response. In academic meetings and in testing situations in classrooms people and instructors want answers immediately. I have also found that my epilepsy scares many people and they don’t want to be around me, because they don’t understand the disease and they are afraid because they don’t know if they would know what to do if I had another seizure. I still have my intelligence and knowledge based on 40 years in higher education, but I have few avenues within the academy to use them. If we can integrate the individuals with autism into the academy as effectively as Cowen suggest we have, can we integrate individuals with epilepsy or aphasia? I have confidence that American higher education can do so if it will try. I only hope that I will see it.