By CarolAnn Edscorn
He’s finally trained! My husband of 26 years has scarcely completed a single one of my sentences all this year. Like most neurotypical people, Christopher has a tendency to want to finish someone’s sentence when there is a pause. That is not helpful for me!
I received my diagnosis of Asperger Syndrome (AS) in 1994, shortly after the birth of our fourth child. This was a wonderful event for me! Finally, there was an explanation for lost jobs, lost friends, and lost opportunities. My husband spied an article taped to the classroom door of a colleague about Temple Grandin, snatched it and photocopied it. He immediately recognized her pattern of thought and behaviors as similar to those of his wife. We went to a local specialist. Then I went to a regional expert. And after the birth of our fifth child, I spent two years with a psychologist friend sorting out my past and healing my wounded heart.
Until recently, very few women were diagnosed with autism conditions. I did not speak until I was almost 4 years old. My mother thought that being quiet was a gift. I was a very “easy” baby. I had numerous infections, particularly ear infections, and was subjected to many antibiotic treatments. Some of these resulted in life threatening reactions.
I was a loner, preferring the woodlands and lakes and streams to people. I was never read to, and I suspect my language developed as a result of the television—particularly soap operas—being on all day. In school I continued my aloneness, lurking near the trees at the edge of the playground, and watching the other children play games, screaming and laughing. I refused to participate in group discussions or reading time, preferring the art table, and making painting after painting with my fingers. I also enjoyed sculpting with clay.
In third grade I was tested and my IQ was rated at 80, but the teachers thought I was bright. In fourth grade my teacher demanded that I learn to read. Apparently I was the class clown, “reading” the pictures in our books. I did learn, but reading was very difficult until sixth grade, when I learned to speed read. Finally the words on the page made pictures and my expressive skills, especially writing, caught up with my receptive skills! By tenth grade I tested with an IQ of 150. But I was always the odd one, shunned by the cool crowd. This shifted a little bit when I learned to play guitar and later became involved with the drama club.
I never wanted to get married or have children, and the fact that I have been married for 26 years and have 5 children amazes me. My eldest son is 22. He experienced what is now termed regressive autism just before his first birthday. I spent the next 18 months ignoring housework and playing with him on the floor, invading his space. What I did is similar to Dr. Stanley Greenspan’s Floortime®. My son has since pursued an associate’s degree in his special area of interest—cars.
My daughter, now 19, is much more typical in her behaviors. She is very social, outgoing, and intelligent. Our third child is 18 and struggled with ADHD. These two are both attending community college part time. Our fourth child is now 14 and is our child with AS. It is difficult, because even though I know so much about autism, he is very different from me. My heart hurts as I watch him struggle with the social rules. Our youngest son is almost 10 and 100% boy, running about, engaging in active play, chattering excitedly about whatever interests him at the moment.
I home educate all our children—and my husband, who is a special education teacher at the upper elementary level. Recently, when I went to a neurologist for follow up tests, the neurologist wryly suggested that I was my husband’s best student. I immediately retorted, “No, he is mine!” And this is true, as Christopher regularly requests my insight with his students on the spectrum!
For 12 years I did nothing about my diagnosis except further my own understanding and develop more sensory adaptations. If a crisis occurred in a relationship, I explained autism and its ramifications. Sadly the most frequent response to continued faux pas was along the lines of “I can’t deal with you anymore. I can’t believe that someone so smart can be so stupid.”
This brings me back to my family and life with AS. My children are well-trained. I often disappear into the bathroom when I need a sensory break, a quiet withdrawal from the constant noise of boys and chatter of girls. They know to not approach me unless someone is close to dying. In the car we have a code. “Mamie’s on overload” is the phrase for turning off the radio, turning down the air conditioner, and reducing interactions. When we enter a city, en route to visiting family, I state “We are all on silence until we are out of traffic.” I think that this might make them prone to entering a monastery, but they all understand that I have to completely focus on the numerous automobiles and dangerous drivers in high traffic. And they all know not to finish my sentences!
Last spring I proffered my usual apology for not bringing them up in a normal fashion. We were driving around town on errands and I was feeling sad about something. My middle son smiled calmly and replied “That’s okay, Mamie. We prefer to be lamron.” It didn’t take me long to realize this was normal— backward. So one positive result of living with a mother with sensory and cognitive difficulties is that my children have a great sense of humor!
My husband has been so supportive. He regularly illuminates my differences with excellent metaphors. He compares my mind to 30 Pentium II® processors. I am always running the permutations of a social circumstance. What do people intend? What does this person mean? What is the appropriate response? It explains how it appears that I am distracted, but I am actually running programs until I find the best one for an event or interaction.
Some of the relationship challenges are due to word usage. I used to read the dictionary and I use words literally. I have gotten better with metaphors, but I prefer to think of these as parallels, looking for events that mimic the pattern that I am seeing in daily life. Puns are not just “groaners” for me, they are outright incomprehensible! Jokes get the same response: “Um.” This is mostly a problem for that certain age when young boys discover joke and riddle books—so I have had nearly a decade of practice in understanding riddles such as “What’s invisible and smells like carrots?” “Bunny farts!” Oh yes, little boy humor is amazing!
When I was in my 20s I was attracted to organic gardening and natural foods. I was alert 30 years ago to gluten and dairy sensitivities. So I have been eating similar to the DAN! protocol for decades. This is how I meet so many parents who have recently diagnosed children. I am standing in the aisle with the natural, gluten-free foods at the supermarket and there is a mother (usually!) with a sheaf of papers and tears in her eyes. When she notices my confident acquisition of food products she asks, “Do you know about gluten-free diets?” My positive response encourages her, and we exchange phone numbers.
Now, in addition to my family activities, I have many speaking engagements across the region, and as far away as California and Tennessee (the national TASH disability rights conference). As I interacted with so many families I met at conferences, I realized that I have something important to offer: hope. Two years ago I went to a family support workshop called “Building Social Bridges” presented by Cathy Apfel. Two other mothers were supposed to attend with me but they bowed out at the last moment. I hate crowds but I chose to attend this meeting anyway. I got there later than when I prefer, so I could not sit down near the escape path and in front at the edge of the crowd—and it was crowded! As the workshop proceeded, I asked a lot of questions, and I had a lot of answers. It became almost a private conversation with Cathy, and we exchanged email addresses. I tried to escape, but I was cornered by a group of parents. This frightened me enormously, but I also had an epiphany. It was at that moment when I realized that what I had accomplished in my life and family could offer hope and courage to other families with children on the spectrum.
Cathy is now my closest friend. She is like my husband: calm, and good with explanations. She helps me interpret the social rules, and her encouragement keeps me going. I do presentations with her now through the Institute on Disability/ UCE (UNH), as well as presentations to schools and support groups. My husband is supportive and radiantly tells everyone that his wife is a great presenter. My children think that my workshops are fun, even though they also miss me when I am away.
As for me, planet Earth finally feels like a safe place, almost like home. When the film ET came out, I cried through much of it, particularly when the little alien plaintively pointed to the stars and said “Home—phone home.” My earliest memories are of late nights, gazing out of my bedroom window at the constellations and wondering when I might go home. I knew I did not “fit in” at an early age. Now I know many adults and youth with AS who have the same longing for home and love of the stars—of all things sparkly or shiny.
I have begun giving myself little gifts. I eat my food the way I want to—in orderly patterns, one color at a time, and often with a spoon as I am still dyslexic. I wear clothing in unusual combinations. Recently a coworker inquired on a casual dress day if my cape and scarf were part of a costume. Of course they weren’t! Most especially I give myself permission to close my eyes, or direct my gaze when and where I want, controlling sensory overload and that sense of invasion that eye contact brings on. After five babies I am comfortable gently rocking and even occasionally spinning. I carry fidgets like smooth stones or Silly Putty® in my pockets, and I am unconcerned about taking them out when necessary. My best gift is my service dog, Shakespeare Aristotle, a dachshund mix trained to obey voice and hand signals. When I travel he is my best friend, keeping me calm and centered in busy airports and metropolitan centers.
I work at McDonald’s, which is not the best job for sensory issues with all the beeps and buzzers and machinery fans blowing. However, I worked at McDonald’s as a teenager, and it has good and fun memories. I took the risk of disclosing my diagnosis and explaining what I needed from management, and they are doing it! They use my name and explain fully what they need. I get little breaks after lunch rush. I love this job because all of the policies are clearly explained and the routine—“Hi! Welcome to McDonald’s!”—is constant. I do not have to become anyone’s friend, so I am free to be a bit goofy. Best of all, I get to talk with parents and grandparents when they bring in children who—to me—are obviously on the autism spectrum. It is a little thing, but it is one more time where I can educate a little bit and encourage a whole lot.
This is the greatest gift of life with family: When I have a meltdown, they love me anyway. When I wear weird clothing, they love me anyway. When I do not get their jokes, they explain them and then actually repeat them so I get to laugh with them. When I cannot stand to be touched or hugged, they blow me kisses. When we argue because I so did not “get” their choice of words (and this happens A LOT in adolescence!), they are willing to talk it out, and we grow closer. This empowers me to keep going, to keep talking to others. My family is my “anchor.” I have examples of loving behavior that I can reflect back to others in my community.
After 54 years on planet Earth, I have a mission, and I choose to accept it.