M E R I D I A N M A G A Z I N E
The Canary in the Crystal Cage: Living with Asperger's SyndromeBy Terry Foraker
Editor's note: This article is being published in recognition of Autism Awareness Month.
One day, while window shopping, a man saw an item that caught his eye with its exquisite beauty. Upon further examination, he saw that it was a case made out of perfectly smooth crystal. He strode into the shop and asked the shopkeeper what the gorgeous object was.
The shopkeeper proudly proclaimed, “It is a crystal birdcage, and you can't beat the price.”
Already enchanted by its beauty, the man purchased the cage and eagerly took it home to display for all to see.
The next day he bought a yellow canary and was charmed by its delightful song. At first his attention was divided between the bird itself and the delicate case housing it. However, his focus eventually shifted from the birdcage, which he soon forgot was even there, to the sweet music emanating from the canary.
The bird, however, came to realize that while it had everything it needed — food, water, air — the cage prevented it from contacting the world outside. Was anybody even listening to its song? After numerous fruitless attempts to move beyond the confines of the cage and to reach out to its surroundings, it learned to accept its limitations. In time, it tired of listening to its own voice and the song died away.
In many ways, the experiences of individuals with the enigmatic condition called Asperger's Syndrome are not so different from that of the canary. While possessing our own unique strengths and attributes, we sometimes seem isolated from the world around us in ways that we, and those with whom we come in contact, cannot quite identify. The key is to work with those strengths within the bounds of our limitations and to learn how to sing again.
My Personal Odyssey
From a relatively early age I had suspected that I was different from my peers in very substantial ways. They seemed to be in on a secret that I had been excluded from. I cannot count the number of times parents, teachers, and people at church would tell me that I seemed to be “in a world of my own.”
The truth, however, was that I knew no other. The disconnect between myself and the rest of humanity seemed as impenetrable as the walls of Babylon. This disconnect led to numerous conflicts with peers and adults alike.
When I was nine years old, I found myself meeting with the school counselor due to an incident between another student and myself in the lunchroom. My various eccentricities, such as “babyish” speech and behavior, difficulty with the most simple motor functions, and a seemingly chronic inability to stand up for my rights, let to constant bullying and scapegoating.
After putting me through a series of tests and spending several sessions with me, the counselor wrote up a report detailing my social difficulties, behavior more consistent with that of a six-year-old, and an extreme lack of coordination. The report also stated that I showed signs of chronic anxiety, due in large part to the incessant bullying that I had been enduring.
As I progressed through high school, the social challenges became far more pronounced and intense. By the time I was fifteen, I was developing a full-blown depression. Within a year I began withdrawing completely from peers and family as the bullying and rejection reached a fever pitch. They finally eased up during my senior year in high school, but by that time the emotional damage had been done and I found myself unable to trust anybody, including my closest friends.
The Discovery
Apart from discovering the fourth-grade report when I was seventeen, the most significant discovery came one morning nine years ago when I heard a radio program on Asperger's Syndrome. I had no idea what it was, or even that such a thing existed, yet as the woman being interviewed described the symptoms, I felt like she was describing me. Every point she mentioned perfectly matched what was on the report. The difficulties with fitting in, emotional difficulties, lack of motor skills — everything was there! Excited, I shook my wife awake and exclaimed, “I finally know what's been going on all these years!”
Over the next several days, I scoured the Internet for information. Miraculously, I was able to locate the name of the condition, which I hadn't caught on the radio program, and before long became very conversant with all of the primary symptoms. (See the end of this article for the history and symptoms of Asperger's Syndrome.) The relief at knowing that I was not insane, stupid, or lacking in character lifted a tremendous burden. But my journey of discovery was only beginning.
I located a psychologist whom I thought could help me come to terms with what I now knew. What I didn't know was that Asperger's Syndrome was still largely unknown in the psychiatric community. The doctor talked to me for fifteen minutes, told me that I was bipolar, and prescribed a couple of medications. Over the course of the next several years, the (mis)diagnoses continued and the medications multiplied.
However, I could not completely ignore the growing suspicions of AS. They intensified four years later when my son was diagnosed with AS. As my wife and parents researched the available literature, they not only saw my son, they saw me as well. I began looking into the possibility of AS once again. Over the next couple of years I became ever more certain that Asperger's Syndrome was indeed at the root of much of my experience. However, the doctors still refused to entertain the possibility.
It was not until March 2007, nine months after moving from Seattle to St. Louis, that my suspicions were confirmed. Having been diagnosed first with a bipolar disorder and then with ADHD, and an emotional and mental wreck from the variety of medications I had been on, I found myself seeking a clinical counselor who could provide a non-pharmaceutical approach to dealing with my challenges.
Much to my surprise, she stated that she only saw mild signs of ADHD. She did, however, see what she called “classic Asperger's.” I had by this time given up on being believed, much less diagnosed, and had resigned myself to whatever my fate might be. Only when I stopped seeking a diagnosis did it come.
I resumed my researches with renewed vigor and came up for air only when I was fully convinced that I was indeed Asperger. Since that time I have neither doubted the diagnosis nor looked back. I fully embraced what I now knew to be the truth about myself, though I still do not completely understand why the Lord has willed that I be AS.
The Mission Experience
While serving a mission had not been a matter of particular emphasis in my family, I found myself interested in doing so during my teenage years. When I was nineteen, I approached my college bishop about a mission. He expressed his appreciation at my desire but told me that he could not recommend me due to my emotional difficulties.
Although emphasizing that worthiness was not a concern, my ability to handle the rigors of full-time missionary service was. Upon returning home for the summer, I spoke with my home bishop — whom I didn't know — and he gave me the clearance I needed.
As soon as I entered the mission field, my college bishop's concerns were realized. My mission was a surrealistic challenge, ranging from the occasionally exhilarating to the frequently traumatic. Although I was a fast learner, my depression and anxiety, coupled with my difficulties in relating to other people (my companions most of all) got in the way of serving the kind of mission that I ought to have. I found myself unable to talk to people, whether other missionaries, members, or nonmembers.
Due in part to my personal difficulties, I ended up in three different missions presided over by a total of five mission presidents. My companions and mission presidents spent inordinate amounts of time “babysitting” me and dealing with my frequent crises. As a result, most of the companionships I was in were far from unified. I was unable to take any sort of initiative in the work, and the work itself suffered.
In recent years, “alternative” missions, such as service missions, have become available for people with Asperger's and similar challenges who desire to serve but whose difficulties would make full-time missionary service inadvisable. Church leaders have been very candid about the difficulties which a full-time mission would present to people like myself, and prospective missionaries are screened thoroughly to ensure that they are able to handle the challenges. (The papers which prospective missionaries complete prior to receiving a call now contain a question about Asperger's Syndrome.)
Although I regret that my mission was not what it could have been and realize that I probably would not be recommended for a full-time mission today, I am grateful that other opportunities are available for those who wish to serve the Lord according to their abilities.
Marriage and Family
It has been said that one of the most important things a person with AS can do is to find the right partner. If I have been blessed in any aspect of my life, this is surely it. I have no doubt whatsoever that the Lord brought my wife and me together. Although I do not believe in the notion of a “one and only,” I do believe that Heavenly Father is immensely interested in guiding people together who can enjoy optimum compatibility. There have been (and continue to be) bumps in our marriage, but we have managed to come to understand each other over 16 years of marriage and have developed a genuine closeness that exceeds anything we could have hoped for.
A common challenge in marriages where one partner has AS and the other does not is that the marriage relationship tends to become “vertical” (parent-child) rather than horizontal (equal partnership of husband and wife). We experienced that for some time, but as we both learned to understand and accept my condition, we have developed a greater sense of equality.
A further wrinkle in our relationship occurred as we realized that our twins are also on the autism spectrum. Our daughter is low-functioning autistic, and our son is Asperger. Needless to say, this adds additional dimensions to the already challenging nature of our family life. However, this has not been without its benefits. Learning about my son has helped my wife better understand me and has also helped me better understand myself. Likewise, my own challenges have helped me develop greater empathy toward my son.
Career
Due to their social difficulties and obsessions with frequently obscure and esoteric subjects of interest, people with Asperger's Syndrome are often unemployed or underemployed. Although many books and other resources are currently available to help us navigate the working world,8 the challenges remain.
Although some of our interests may not translate very well to the workplace (such as my interest in tracking the changes in the Quorum of the Twelve Apostles since 1960, for example), there are many that do (such as my passion for writing). I continue to experience difficulty in earning the sort of income that will allow me to support a family comfortably, but I have been extremely blessed in having been continuously employed for most of the time that I have been married.
Furthermore, I have recently been able to find work where I am able to use my writing and computer-based talents in a way that is satisfying to me and helpful to my employer.
The Church Crucible
I am grateful that I have seem to have been blessed with a strong understanding of the doctrines of the gospel and a firm testimony of their truthfulness. On the other hand, I am also constantly confronted with the reality of my challenges at church.
Being part of a ward family requires me to interact with other church members, and this presents its own set of difficulties. It is perhaps at church that I am most keenly aware of my social challenges and of my seeming inability to “fit in.” Somewhere I seem to have picked up the message that being different equals being inferior, and that I need to everything I can to be “normal” and to be “like everybody else” in order to feel that I am of worth.
Many people with AS are conscientious and perfectionistic to a fault, and so emphasizing the need to “do more,” “do better,” or “be better” only heightens the already intense feelings of inadequacy. The awareness of my differences has led to a tendency to continually compare myself with others and to compete with them in a futile effort to “measure up.” This constant focus on myself, coupled with a perversely competitive focus on others, negates every effort I make to help build up Zion.
I have learned that as I come to Christ through scripture study, sincere prayer, and temple worship, I am better able to focus on Him and to keep my relationships with other people in their proper perspective. Although I seek to love and serve others as I am able, I also realize that in the end I am accountable to my Heavenly Father and to Him alone.
The loneliness I feel at church may never completely disappear, but as I reach out to others and try to help them understand my struggles, I find that they generally respond kindly. In the rare instances where people react insensitively or even rudely, I have learned to remind myself that they have their agency and therefore are responsible for how they treat their brothers and sisters.
The more I focus on my relationship to my Heavenly Father, the less I am disturbed by the very real differences that are constantly before me.
Despite this awareness, church continues to be a challenge, especially with my son who is also AS. Because AS is a disability that is largely “invisible,” ward members who are unfamiliar with AS are sometimes impatient and unable to understand or accept the very real limitations that we experience on a daily basis. It is a constant effort to remain in the meeting or the class where I know I ought to be and to avoid pacing the halls, as is my inclination.
Some days are far better than others; in general, I have found that when I pray for help prior to attending a meeting or activity, I am better able to handle the pressures of being in a crowd (any more than two or three people).
The Blessings
Asperger's Syndrome may not be curable, but neither is it a death sentence. I have since learned that AS is not without its compensatory blessings. For all of the frustrations of trying to understand and communicate with others, and for the loneliness that comes from not fitting in as I would like, the benefits cannot be denied.
Although I struggle with short-term memory functions, my long-term memory has served me well. I have also learned that I have been blessed with considerable insight into human behavior and things of the spirit. There is still the frustrating tendency to overlook the obvious, but my perspective probes and penetrates more deeply than it might have otherwise. In addition, I have seen the benefit of formulating a broader philosophy of life.
The extent to which these blessings can be attributed to AS is debatable, but my studies have shown that individuals with Asperger's Syndrome (and autism in general) have a tendency to see more deeply than their more “typical” peers; perhaps this is because our social isolation allows us more opportunity for reflection and introspection. The challenge is to organize these insights into a cohesive, unified whole.
Learning from Asperger's Syndrome
If I have learned anything of value — apart from our eternal relationship with our Divine Father and the redeeming mission of our Savior, Jesus Christ — it is that the Lord, in His infinite wisdom and mercy, has given us precisely the situations that will enable us to best fulfill our mission in mortality as we seek to learn and implement His principles throughout our journey.
However, many of the blessings that are designed for our benefit come disguised as afflictions. It is only through faith in our Heavenly Father and in His love for us that we can find the gems buried beneath layers of pain and confusion. Paradoxically, it is the voyage of discovery itself, unpleasant as it may seem, that brings the priceless jewel — our refined soul — into existence.
The gifts of adversity come in many forms. For some it may be an obvious physical handicap; for others, a severely dysfunctional family. It may even be a convergence of several factors, which provides its own unique set of challenges. However, if we can maintain faith in our Heavenly Father's providential purposes for our lives, remembering that “ all things work together for good to them that love God,” 9 then we can observe the miracle of perfection working in us as we become what the Lord means for us to be.
One of my favorite passages of scripture is from the Book of Mormon:
And if men come unto me I will show unto them their weakness . I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.10
Is there a grander, more comforting promise anywhere? I have adopted the above as my own personal motto and as a reminder that when pain has accomplished its purpose in teaching us humility and in bringing us closer to Christ, then we may be released (in the Lord's good time) into an abundance of greater joy than we could ever hope for.
Though my Asperger condition certainly has a tremendous influence, it is not my complete identity.
I have been made very much aware of what I am not — I am not athletically inclined, I am not socially confident, I am not a leader. However, the Lord is the Great I AM, not the Great I Am Not! It is important for us all to forge our own identities, but doubly so for those of us with AS.
People seem to delight in focusing on our differences (and we may even take a measure of pride in doing this ourselves), but this is largely a negative perception. When we focus on what we are not at the expense of what we are, than we are left with a big nothing. This only reinforces the already strong tendency to compare ourselves with others.
Taking an honest inventory of my interests, gifts, and competencies has helped me to realize who I am. A variety of personality tests and profiles has helped me understand both my strengths and my limitations, while immersing myself in the doctrines of the gospel has helped me understand my eternal nature.
I have gained a deeper appreciation of what President Boyd K. Packer meant when he said, “T rue doctrine, understood, changes attitudes and behavior. The study of the doctrines of the gospel will improve behavior quicker than a study of behavior will improve behavior.”11
The delicious paradox is that as I have increased my study of both the scriptures and of human behavior, my understanding of each is informed, reinforced, and enhanced by the other. This spiraling understanding has enabled me to live with my condition with a sense of wonder and grace.
Asperger's Syndrome presents its own challenges, particularly with regard to social interaction and the striking differences that we perceive between us and our associates. The combination of social isolation and feelings of inferiority can be tremendous burdens, yet I have found solace in the following gem from Elder Henry D. Moyle:
I have a conviction deep down in my heart that we are exactly what we should be, each one of us, except as we may have altered that pattern by deviating from the laws of God here in mortality. I have convinced myself that we all have those peculiar attributes, characteristics, and abilities which are essential for us to possess in order that we may fulfil the full purpose of our creation here upon this earth…
[T]hat allotment which has come to us from God is a sacred allotment. It is something of which we should be proud, each one of us in our own right, and not wish that we had somebody else's allotment. Our greatest success comes from being ourselves.
I think that we can console ourselves best by believing that whatever is our allotment in life ... the Lord has been wise and just, and I might add, merciful, in giving to us that which we need to accomplish the particular purpose of our call.12
The complex interplay between an eternal spirit with unlimited potential and a mortal body with physical limitations is far beyond my ability to comprehend (although it is an intriguing field of study which I hope to understand better in the future). It is enough to say, as did Nephi, that while I do not know all things, “I know that [the Lord] loveth his children.”13
Although much remains unknown about Asperger's Syndrome and its origins, and even though I have been pained by some careless words and actions of well-meaning friends, teachers, and church associates, I realize that at times I don't understand my own condition much more than they do and therefore forebear with them even as I hope they will have patience with my own idiosyncracies.
In the words of Hugh Nibley, “The church is a training school in which everyone is there for the training.”14 This means that there is much that I can learn from you in terms of relating with my fellow beings and gospel family members, and there may even be a thing or two that you can learn from me about facing life's challenges and embracing one's own individuality.
Let us learn together about appreciating each other's strengths, even — or rather, especially — when they come disguised as what are commonly regarded as weaknesses.
***
A Brief Diagnostic History
Due to the increased attention which Asperger's Syndrome 1 has been receiving over the past ten years in an ever-increasing volume of books, magazine and newspaper articles, radio and television interviews, and even a feature film, one may suspect that it is a fairly recent development — the “disability du jour.”2
As a matter of fact, it was “discovered” in 1944 by Hans Asperger, a Viennese pediatrician who noticed a series of unusual traits and behavior patterns in a group of children whom he was observing. He referred to this syndrome as “Autistic Personality Disorder” and little was said about it outside of pediatric and academic circles until 1981.3
That year British psychiatrist Lorna Wing, recognizing that some of the autistic children with traits similar to those observed by Dr. Asperger had higher language capabilities and higher functional capacity in general, renamed the condition Asperger's Syndrome (AS) to distinguish these children from those with “low-functioning” autism. She published her findings in a groundbreaking paper that attracted the attention of neurologists, pediatricians, and behavioral scientists. The first diagnostic criteria were published in 1989, and by 1994 Asperger's Syndrome was officially recognized by both the World Health Organization and the American Psychiatric Association, both of which published information on the disorder in their textbooks.
By 2000 Asperger's Syndrome, had been featured in an ever-growing stream of books, articles, media interviews, and websites.4
Asperger's Syndrome Explained
Although AS is a multifaceted condition and far from being “one size fits all,” several traits are likely to be found in those with AS. They may not appear significant when considered individually; taken together, however, the effect is striking and an indication that Asperger's Syndrome may well be present. The following characteristics are taken from the 1991 Gillberg Diagnostic Criteria, which were the first “official” criteria published and are still the guidelines of choice for a great many clinicians.5
- Social difficulties: This sense of isolation is perhaps the most common, prominent feature of AS. Much like the cage that enclosed the canary, there is some sort of barrier that stands between those with AS and their peers. Though nearly invisible, it is very real.
As the baseball player who reaches out to catch the ball but never quite manages to, Asperger individuals are reaching out to connect with people but are forever missing that connection. Much of this difficulty is a result of being unable to “read” people and to pick up on the subtle social cues that are such an important element of interpersonal relationships.
The important thing to remember is that unlike individuals with “classic” autism, who are often socially indifferent, those with Asperger's want to connect with others and experience significant frustration due to their inability to do so. In addition, a lack of understanding of appropriate social conduct combined with a tendency to impulsive behavior is a common source of conflict with non-AS people who do not understand these challenges.
- A limited range of interests with intense focus : An Asperger individual will often display what seems like an excessive fascination, bordering on obsession, with memorizing (and reciting) facts such as local bus schedules or the comings and goings of Halley's Comet over the past five hundred years, to the exclusion of almost all else.
The resulting paradox is that although the AS person is an object of wonder and admiration for this encyclopedic knowledge in the area of expertise, he or she is also considered “odd,” “eccentric,” and “unbalanced.” Associates frequently become bored with repeated airings of information that they find uninteresting and will avoid the AS individual, contributing to further isolation.
- Underdeveloped fine and gross motor skills: Many children are physically awkward, particularly as they approach adolescence. This is normal, but most outgrow it and find their bearings. On the other hand, people with AS frequently experience chronic difficulty with basic motor skills — such as catching a ball or walking in a straight line. This has significant social consequences for children, especially boys, who are often judged based on their physical prowess and may be labeled as “gay” or “sissy” if they show a lack of aptitude in sports and games.
- Cognitive challenges: Although individuals with AS are frequently quite intelligent, as evidenced by their ability to memorize facts, there is often difficulty in applying their knowledge and seeing the “big picture.” Their verbal and grammatical skills often range from the normal to the superior, but again may be expressed without a larger context.
Poor organizational skills may also be a factor. Adults and peers without a proper understanding of the condition may conclude that the AS person is either “stupid” or “lazy” and may even tell the person so. As a result, the affected party frequently comes to accept the labels and begins applying them to himself or herself.
- Poor sensory integration: One of the more enigmatic aspects of AS (along *with autism, ADHD, and other neurological disorders) is difficulty with sensory integration. In brief, this means that the individual with the disorder experiences “overload” with regard to one or more of the senses. Some are overly sensitive to loud noises, others to textures, and still others to the sensation of being in a large group of people. This can also have an effect when one or more senses are combined.
For example, some people with AS can either listen to somebody who is talking to them or look at them, but cannot do both at the same time; the combined effect is too overwhelming.6 This may be a key factor in the lack of eye contact that is notorious among people with Asperger's Syndrome.
- Emotional problems: The continued sense of social isolation, coupled with teasing and bullying, often leads to feelings of depression and anxiety. Navigating the interpersonal dynamics of school, church, or even home can be a social and emotional minefield. The fear of saying or doing the wrong thing, and of the possible repercussions, is often so great that a full-blown anxiety disorder develops at a young age. As the anxiety continues and increases, the overtaxed brain is at risk of collapsing under the weight of the stress, resulting in depression.7
Because of the various “side issues” associated with Asperger's Syndrome, it is frequently misdiagnosed as clinical depression, bipolar disorder, ADHD, and other conditions. Although treatments for these may be of help, they do not address AS as a whole. Since there is no magic cure — no pill, no surgery, no therapy — it is essential for the AS person to find a counselor who is familiar with Asperger's Syndrome as well as the other disorders and who is willing to take the time to sort through the symptoms so as to make an accurate diagnosis.
***
Notes
1 A helpful overview of Asperger's Syndrome (abbreviated AS), including the common symptoms and their effects, can be found at http://www.tonyattwood.com.au/ad.html. Dr. Attwood is one of the world's leading authorities on AS. For a comprehensive treatment on AS, the interested reader is referred to his book The Complete Guide to Asperger's Syndrome.
2 http://abcnews.go.com/Health/story?id=3802533&page=1
3 Tony Attwood, The Complete Guide to Asperger's Syndrome , p. 12-13
4 Attwood, p. 35-36
5 The more controversial and restrictive DSM-IV criteria of the American Psychiatric Association are currently under revision and are expected to match more closely the Gillberg criteria. The latter are believed to resemble more accurately the characteristics originally observed by Hans Asperger. The DSM-V is scheduled for publication in 2011, according to the timeline at http://www.dsm5.org/timeline.cfm . On the possibility of revising the criteria for DSM-V, see page 4 of “Asperger Syndrome Grows Up” at http://www.aspires-relationships.com/Asperger_Syndrome_Grows_Up.pdf .)
6 Juanita P.Lovett, Solutions for Adults with Aspeger's Syndrome , p. 81
7 See Dr. W. Dean Belnap's article “How the Brain/Body Reacts to Anxiety and Stress” at http://www.meridianmagazine.com/ideas/060127brain.html )
8 For example, see Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism and http://www.coachingasperger.com/ .
9 Romans 8:28
10 Ether 12:27
11 “Do Not Fear,” Ensign , May 2004, 79.
12 Conference Report, October 1952
13 1 Ne. 11:17
14 Hugh Nibley, ed. John W. Welch, The Prophetic Book of Mormon. The Collected Works of Hugh Nibley, vol. 8. 1989: Salt Lake City, Deseret Book, p. 564.
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