Karen Lewis delivered this speech on May 15, 2005 at the annual AANE Gala.
My goal this evening is to recognize and honor the parents of children with Asperger’s Syndrome and to express thanks to AANE for being there to assist us all as we meet those special challenges of Asperger’s parenthood. As parents, the unique struggles of our children to cope with the neurotypical world have become our struggles. Because of this common bond, we have much to learn from the similarities and differences in our family histories, present circumstances, and in helping our children plan for the future. Tonight, I feel privileged to share my family’s experiences with Asperger’s Syndrome. I normally reserve such intimate personal details for living room conversations with family and close friends. But because we all share a direct or very close exposure to Asperger’s, I feel comfortable with considering all of you as comrades in intimacy. So welcome to my living room and let me share with you a short story entitled, “A Neurotypical Family’s Journey into Aspieland”.
Chapter 1: The Discovery
About 5 months ago, on December 30th of last year, my husband and I were enjoying a cozy evening in the Berkshires around the fireplace of new friends. The conversation turned to family and we proudly mentioned our dear, loving son, Ryan, a Boston University graduate, who recently served his country in computer security with the US Army in Baghdad and was now 25 years old and stationed in Heidelberg, Germany. Our friends are both clinical psychologists and when we described the details of our son’s life-long struggles with organization, social behavior, time management, etc. They both said almost simultaneously, “I bet he has Asperger’s Syndrome”. My husband is a college professor and I have a master’s degree and we had consulted many mental health professionals about our son through the years, but, until that remarkable moment, we had never heard about Asperger’s Syndrome. Asperger’s dominated the remainder of that evening and the next few days were spent on Asperger’s web searches. Within a few weeks we met with Dania Jekel at AANE to develop a strategy for talking to Ryan about Asperger’s and for dealing with his very high functioning neurotypical sister, Mindy—and to hopefully repair the intrafamily strains from her growing up with a brother who was “pretending to be normal” but really wasn’t.
Chapter 2: The History
After 9 years of unsuccessfully trying to become pregnant, we adopted Ryan, a handsome, adorable 4-month old with very high APGAR scores. He also was sweet and good-natured, so we seemed gifted with the perfect child. Like the age-old story, a year later I became pregnant with Mindy.
The early years were glorious: Ryan and Mindy were inseparable and it seemed like the perfect family. There were, however, unknown cracks. Ryan’s teacher suggested he repeat first grade because he seemed unable to progress at the normal rate and might have trouble moving directly to second grade. He was, however, generally bright and an avid reader and for social reasons, and with some denial, we insisted he move ahead. During Ryan’s sixth grade year in the Brookline school system he rapidly became overwhelmed by organizational demands. He also began to move in and out of a gray area we later termed “The Zone,” a state of functioning characterized by avoidance of responsibility, inappropriate social behavior and depression. It was the early 1990’s, Asperger’s Syndrome was essentially unheard of, and Ryan and my husband and I began grueling rounds of case studies and clinical sessions with special educators, child psychologists and specialists in peer-group dynamics. The primary message was that Ryan had a “hard-wiring” problem that caused him to process information very slowly and that he would progress adequately but about 5 years behind his peers.
My husband and I were coping day to day with a very puzzling child with no one else to talk to and support us through some very challenging parenting. There was nothing else the psychologists could do and we just had to get through this parenting challenge the best we could. This was not easy!
Ryan was bullied often, called a “nerd,” and suffered periodic valleys with weeks of complete detachment from the world and from appropriate organization and responsibility behaviors. Many of Ryan’s homework assignments were surreptitiously avoided by tucking comic books inside of his textbooks. Instead of many of the usual peer group activities of adolescent boys, Ryan would often retreat to the fantasy world of science fiction, mysteries and Magic Cards in his room. Some other notable eccentricities included difficulties with understanding time and scheduling, prioritizing, difficulty in crossing the street, wearing clothing inappropriate for the weather, and inappropriate social responses with his peers.
On the positive side, Ryan possessed several highly unique and wonderful qualities. He was exceptionally gentle, kind and capable of relating especially well to adults and younger children. He had a great sense of humor and also was able to recall minute details of books and videos. My husband and I are both highly functioning neurotypicals, always pushing ahead in our worlds and very rarely taking time to smell the roses, and were always enamored of Ryan’s ability to savor the moment. One particularly vivid example is unforgettable. On an unusually balmy and tropical April Brookline afternoon, Ryan, who was 15 at the time, arrived home almost 2 hours late from school. I was frantic because Ryan had to cross Beacon Street to get home and I was always concerned about his safety. When he finally got home, he took my hand and walked me outside. He said, “Mom, close your eyes and feel that breeze. I took the long way home from school. I was just enjoying the breeze!!!”
Both my husband and I were baffled by Ryan’s widely varying behaviors and always uncertain whether to push him harder, make excuses for him or just “kill” him. Ryan’s behavioral strengths and weaknesses had us vacillating between “he’ll eventually be fine” denial and the feeling that he would never be able to function adequately in this world. He is such a good person and tried so hard that many of his teachers just kept giving him extra consideration to help him get by. (He recently admitted to us that in the army they help him out as well.)
In contrast to Ryan, sister Mindy in pre-adolescence began her life-long role as the classic over-achiever, driven to succeed academically, athletically and socially. As Ryan, and then Mindy, entered their peer-pressured early teenage years, their especially close relationship began to deteriorate. The sparkling sister, honor award winner in just about everything, became highly resentful of her brother, who barely was getting through school, lying to his parents about meeting his responsibilities, and generally seemed spaced-out, but yet getting the lions-share of her parents attention. Mindy also was embarrassed when friends met her brother and told her he was strange and weird. At worst, Mindy began to feel unloved by us and at best, felt her strange brother was loved much more. As the years passed, Mindy’s resentment hardened into anger and, after she left for college, largely avoided speaking to, or even about, her brother. Ryan would reach out to her many times through the years but she would not let him in. Mindy also was very, very angry with my husband and me, and our relationship with her was extremely difficult for about 10 years. Reality was that many years of stresses and strains of three high achieving neurotypicals living with one Aspie shattered our vision of the perfect family.
Chapter 3: What AANE Has Done for Our Family
Meeting with Dania Jekel and learning the specifics of Asperger’s Syndrome gave explanation to years of mystery, confusion, and doubt about Ryan’s struggles to cope with the neurotypical world. These revelations, only a few months old now, have already profoundly affected our family dynamic.
Ryan, for many years, has felt different from most people. AANE has helped Ryan understand these feelings, and has given him confidence in his continued struggle as a member of the Aspie minority attempting to cope with the overwhelming neurotypical majority on our planet. This confidence has helped erase his self-doubt that he might just simply be lazy or stupid. Dania’s reassurance to Ryan that Aspies can live happy productive lives with the right guidance has made Ryan feel so much more comfortable in his own skin. The difference in his personality since he internalized his Asperger’s diagnosis has been significant. Ryan now knows that after completing his Army duty, the support services offered by AANE will help smooth his transition to the civilian world and his progression toward a satisfying and rewarding personal life and career.
Mindy, for many years, felt unloved because her parents heaped attention on her much more needy brother. For the first time, with our understanding of Asperger’s derived from AANE, my husband and I have been able to clearly understand our family dynamic and to explain it to Mindy. We have now fully acknowledged her perception of being “under-loved” and our limitations as confused parents coping with gnawing frustration and uncertainty. These frank discussions already have led to great improvement in Mindy’s relationships both with Ryan and with my husband and me.
I, for many years, felt failure in my relationship with my daughter. Because of my special relationship with my mother, and my mother’s special relationship with my grandmother, a similar special relationship with my daughter was one of my lifelong aspirations. I was certain I loved Mindy every bit as much as I loved Ryan, and felt terrible guilt about giving her less attention than him. The recent revelation of Ryan’s Asperger’s Syndrome and the knowledge that AANE is a key resource to our family has provided support and confidence in my own family-related emotional struggles. Recently, for the first time in 10 years, my daughter and I have begun to develop the close emotional bond I have dreamt about for so long.
And that is the end of my story……….. for now.
Dania’s invitation for me to speak tonight enabled me to compose thoughts and verbalize feelings that for so many years were shared only with my husband and parents in a much less organized and often emotionally-charged manner. As parents of children with Asperger’s Syndrome, you can surely understand my embarrassment in discussing my child’s problems in casual conversation. In providing knowledge that there are many others like my son and that there are strategies to help us all, AANE has given me hope and a new direction. I recently met with 5 other Aspie mothers at AANE. We shared stories and cried and hugged. When I left and got into my car, I sat there a moment before driving off and cried just knowing that my child was not the only one who didn’t know to take his heavy jacket off when he was sweating.
Aspies have struggles all through their lives but the struggles of young adults with Asperger’s is very “real world”. This goes beyond the bullies on the playground and reading comic books instead of textbooks. We are dealing now with getting a job and supporting themselves, driving a car, getting married, having children. We, as Aspie parents, need the support of AANE so we can feel sure we are doing all we can to guide our adult children in the right direction. And our adult Aspie children need the comfort of knowing they are not alone in their struggles as they grow and go out into a very neurotypical world.
Physically, Ryan looks great. He is handsome, well-built, and, from the outside, there is no evidence of his difficulties and so people expect him to act as a neurotypical. Mentally, however, dealing with each day is so draining for him as he continues “pretending to be normal.” Now that he is aware of Asperger’s, he pays very close attention to the Aspie things he does. Ryan tells me he tries to think like a neurotypical but it is too much work. He wants to learn to drive, he wants to retire from the army next year and get a job in the civilian world, he wants his own apartment, to be independent and have a girlfriend. Naturally, I want all that for him. However, his transition to civilian life will require special support, what I will call “Phase 2 Parenting,” and guidance from AANE.
It’s like Ryan is on a sailboat without a compass OR a rudder; he will have difficulty staying on course, but somehow he will manage to stay afloat. I feel AANE is his compass and his parents are his rudder, and with the three of us working together, Ryan will sail away into life. And if his sister continues to open up her heart, and support Ryan as well, Ryan will win the Regatta!
This is my dream for him. And my dream for the rest of us here tonight is that we all spend more time “enjoying the breeze.”
Karen Lewis is a business woman living in Newton, MA.