IF I KNEW THEN WHAT I
KNOW NOW
WHAT I HAVE LEARNED ABOUT LIFE WITH ASPERGER’S SYNDROME--
AND WHAT STILL ELUDES ME
By Lars Perner: presented at the annual meeting
of the Autism Society of America
Indianapolis, Indiana, July 17-21, 2002
Stories of the lives of individuals on the autism spectrum abound (e.g., Holliday Willey, 1998, 2000; Newport, 2001;
Shore, 2000; Williams, 1994). There are frequently remarkable similarities
between those accounts but also significant differences. Those of
us on the autism spectrum — and those who care about us — usually
learn a great deal from the insights of each writer. In this account,
I describe what I have learned about coping effectively in my life.
I further illustrate the significance of the context (or environment)
of autism on outcomes and opportunities.
My case of Asperger's Syndrome is borderline and,
in many ways, quite mild. I have also had the fortune to live a
rather privileged life--it may even be said that, as an academic,
I have come into an environment where eccentric people, at least
within reason, are tolerated and sometimes even admired! Seriously,
however, that is not to say that I haven’t had problems. Given the
importance of first impressions in interviews, I still have not
secured a tenure-track position after having my Ph.D. completed
for three and a half years. Some of the observations I make below
are a bit “tongue-in-cheek,” but my impressions were real when they
took place!
One of the things about Asperger's, at least when
it is confined to a severity no greater than mine, is that many
of the symptoms are not ones that "normal," or neurotypical,
people do not experience to some extent now and then. Most people
at some point experience the frustration of being misunderstood,
experiencing frustration in traffic, and having difficulty recognizing
faces. And, of course, we are not the only ones to be naïve. Therefore,
it is not surprising that many of us have had our symptoms dismissed
as normal or things to be conquered. There are times when even I
have tended to buy into that reasoning. I am open to the possibility
that being a “spoiled brat” may have been the root of some of my
problems but I like to think not many!
When I eventually told some of my close friends
and colleagues about Asperger's, many of them said that they had
initially attributed my somewhat unusual behaviors to cultural influences
resulting from my Danish birth and immigration to the United States
at age 14 (one also attributed his perception to extensive stuttering
problems that I experienced throughout most of my high school and
college years). Ironically, I almost certainly would have had even
more problems "fitting in" to a culture that demands so
much more conformity than that expected in the U.S.--as was amply
evidenced in my elementary and middle school years.
At the risk of resorting to a cliché, I have always
known that I was "different" (but as I always perceived
it, unquestionably superior) in some sense. Ever since I learned
the meaning of the word, I must confess to have taken pride in the
label of being "eccentric." (And, having a vested interest,
I am also a fervent believer in the theory that absent-mindedness
is a sign of genius!) The facts that I am a bit on the clumsy side,
do not like confronting people, have difficulty recognizing faces,
and have problems with non-verbal communication were not news to
me. And, although I still don't quite understand what maintaining
effective eye contact with others entails, I was well aware of feedback
in that area before.
Nevertheless, my diagnosis with Asperger's, a
condition I had never of heard when it was revealed to me at age
32, came as quite a surprise. When a psychiatrist that I had consulted
about the possibility of Attention Deficit Disorder got out the
DSM IV, the symptoms matched perfectly, but the autism spectrum
classification threw me off. Asperger's does explain a great deal
of things. For one thing, the diagnosis greatly reduced my embarrassment
of not being able to shake the habit of talking to myself! And,
I must say that once I read more about the subject, I started to
feel quite a camaraderie with others sharing that classification.
One of the things I have learned is that I am
best at activities that do not require getting things "right"
on the first try--I can do great things when I get the opportunity
to do revisions and enhancements, but activities such as flying
aircraft and doing “live” cross-examinations in court are not for
me. (I changed my career plans my freshman year in college to become
an academic rather than an attorney.)
While I eventually learned to navigate the Los
Angeles freeway system, I have learned by now that I should not
force myself to drive in new locations or with noisy passengers
unless it is absolutely essential--although driving in a heavily
congested downtown of a strange city was a surprisingly delightful
experience when I had a very pleasant feminine navigator give me
ample advance notice on when I needed to turn or change lanes! I
have learned that when I do have brave this kind of driving, I need
to budget plenty of time for getting lost.
I have learned not to force myself to go to cocktail
parties and receptions despite the value of networking. Ironically,
it's not so much the social experience I can't handle, but rather,
the problem is that the words of my conversant simply drown in the
sea of background talk. Other people seem to be able to be able
to effortlessly isolate the words of their partner from those in
the periphery, but I constantly have to have him or her repeat;
at other times, I have to lean uncomfortably close and concentrate
intensely on the other person's words to get anything. At professional
conventions, I am much better off getting an early night's sleep,
to recover from the numerous impressions and interactions of the
day, so that I can get a fresh start the next morning.
I have learned painfully from experience, in areas
ranging from learning to play golf to speech therapy, that no matter
how hard I try, attempting to learn by imitating others is just
not going to cut it. When trying to pronounce new sounds, I must
be shown explicitly how to produce them--just hearing them from
others will frequently not enable me to say them. Merely watching
someone else's continuous movements will not allow me to mimic them--I
have to have the steps broken down sequentially, much like how I
must have explicit directions on how to get to a new place rather
than trying to follow a continuous map. I have learned that there
are some physical things that are just not rewarding enough to put
the effort into learning--but only long after I persisted for a
while in my M.B.A. program's recreational volley-ball team!
It's taken numerous embarrassing situations for
me to realize that I am often a bit slow to get other people's subtle,
non-verbal messages—particularly when it is time to end a certain
train of conversation or when I am innocently encroaching into impertinent
territory. I can't say that I have ever become really adept at,
or comfortable in, picking up such signals, but at least I now know
that it is crucial to look for them.
I have learned that, for some inexplicable reason,
my students and acquaintances do not appear to share my enthusiasm
for lengthy discussions of antitrust law, market segmentation, and
the lyrics of the late Jim Croce's songs.
One of the areas where I continue to experience
difficulty is in spontaneity and social coordination. Although I
am flexible enough to change plans that affect me alone when that
is advantageous, it is much more uncomfortable for me to change
plans that involve others. It is sad an ironic that I often actually
resent a new option being offered to me. For example, when I have
planned with someone to go to dinner at a particular restaurant,
a sudden question of whether I would prefer another one will generally
not be welcomed. I have always been gracious about it, but the truth
is that the offer would, in most cases, at best be a nuisance. It
took me a long time to realize what was going on as I was feeling
guilty for being so irritated over something for which I should
arguably be grateful. Let me say, by the way, that making a change
to accommodate the other person would not necessarily be so bad
if the person actually requested it because the other person’s request
is a very good reason to change. What is problematic is having to
both decide if I would have liked the change and if the other person
is making a sacrifice that I should not accept.
Many writers (e.g., Frith 1992) have recognized
the paradoxical nature of autism. One aspect that strikes me in
particular is what I will portray through the metaphor of El Niño,
the name given to the erratic weather patterns that were experienced
in the late 1990s. Autism, ironically, that may “trip” behavior
or performance into one of two diametrically opposed sides. That’s
not to say that I can honestly pretend to quite understand such
dynamics even theoretically. For example, while individuals with
Asperger's are often said to have difficulty in abstract things
(see Perner, 2001 for a discussion), we are said to intellectualize
our feelings excessively. What is a greater manifestation of abstraction?
(And how else could one hope to understand such things anyway!?)
As an academic, I actually relish in abstraction and often become
frustrated precisely when I'm aware that others just don't get my
insight!
As another illustration, consider temperament.
It will well known that some individuals on the autism spectrum
have great difficulty controlling emotional outbursts (e.g., Myles
and Southwick 1999) and tend to be highly confrontational. In my
life, I have actually seen an evolution, starting out much with
such inclinations, but swinging to the other, highly restrained,
extreme later in my life. By now, I am generally a very gentle soul,
and it took quite a provocation a few years ago to get me to tell
a student to “get [her] act together!”
Ironically, while some clinicians characterize
the majority of people with Asperger's as lacking in a sense of
humor, this sense is one of my great assets--but also one that has
repeatedly gotten me deeply into trouble with people who lacked
the intellectual firepower to understand it. How I wish others could
see things from a perspective closer to mine! Others have consistently
categorized my sense of humor as "dry," which seems as
good a label as any. How disillusioning it is that many people just
don't get my gift!
It's been intensely frustrating that many people
have reported that they simply could not tell when I was serious
and when I was not. I understand that most people seem to have something
comparable in their tone and mannerisms to the “winks” we use in
e-mail, but I have never quite caught onto what those equivalents
are and how to implement them.
There are plenty of testimonials to the fact that
love is a difficult mission even for "ordinary" people,
but this is definitely an area in which I lag behind. Not surprisingly,
one of my favorite songs is the Atlanta Rhythm section's "Imaginary
Lover." Like Joan Wilder in Romancing the Stone, I can accurately
be described as a “world class hopeless romantic,” and I have deeply
admired, and longed for, several women from a "safe" distance
throughout much of my life. But I never had an "official"
girlfriend. I had my first real date at age 35.
One thing I have learned is that while Internet
romances have the dangerous potential to seduce one away from finding
real relationships, this may be the most realistic point of initial
contact with the soul mate I still hope to find. The trouble here,
of course, is that unless one is judicious in using geographic “filters,”
distance may veto even great matches—as I have learned from humbling
experience. Another problem is that these romances may never move
into "genuine" (as opposed to "virtual") reality.
But the bottom line is that the Internet is an emotionally "safe"
place to gather initial information on the other person, and a domain
in which one does not have to face the possibility of rejection
face to face. Some would criticize this approach as lacking somewhat
in spontaneity, but to me this is a modest price to pay for the
ability to be able to think the situation over before committing
to the next step. There is, of course, also the question of realism
for someone who has harbored years of very specific dreams about
a soul mate, but spent little time actively pursuing one in the
"real" world.
I have learned that most people simply do not
share my commitment to "the rules," and I have realized
that they amazingly do not partake in my astonishment and indignation
when these are blatantly flaunted. Some people even have this idea
about some "spirit" of the law! Similarly, I must say
that I never quite was able to intuit predominant opinions of what
is realistic and reasonable.
Requests from others — and having to make requests
— are a source of continuing discomfort to me. To me, a request
is not something that can easily be made and easily rejected. If
I were to turn down a request from others, there would be too much
“loss of face” for both of us. Therefore, I greatly agonize about
making requests, and turning down requests is difficult for me.
In particular, one cannot genuinely withdraw a request without a
feeling of discomfort being left, and a disclaimer to the effect
that I “should not feel obligated” has little calming effect. I
have probably been the victim of many unreasonable student requests
in the past, although I have “cracked down” harder in recent years.
This is an area where I am still struggling, and I do not envision
much progress on the immediate horizon.
One question that faces those of us with Asperger's,
parents of such individuals, and policy makers, is that of how to
balance our comfort against the need to learn from experience. My
mother (who did not explicitly know about Asperger's as I was growing
up) always insisted that I should learn to concentrate in noisy
and distracting circumstances--and I reluctantly have to admit that,
if growth is genuinely achievable, there may be something to be
said for that view (but note that I did not that this "something"
was much!) I was miserable when group assignments were required
in school, and to this day I am grateful that I graduated from college
before such occasions of terror became as common as they now are
in my colleagues' classes. Ugh! Unfortunately, this is not an area
in which we are likely to get much sympathy, so all I can say is
that I am relieved that I have "escaped" into the academic
profession. In a different domain, while I have never had occasion
in real life to find roots of silly quadratic equations, multiply
ugly matrices, or integrate messy functions, these are probably
not experiences that could have been avoided if I were to go as
far as I have in my academic pursuits.
As Elton John remarks in his song, “I’m still
standing, better than I ever did….” Many of us progress a great
deal as journey through adulthood. At the very least, we tend to
get more insight into our feelings and experiences. There are some
things I have learned from my life with Asperger's, but the things
I have learned with any degree of certainty are, unfortunately,
by far outweighed by those that persist in eluding me. I am still
very much a work in progress!
This personal story is under the copyright of
the original author, Lars Perne, and is reproduced with permission.
You can visit his blog at:www.aspergerssyndrome.org
or his site at: www.LarsPerner.com
Click here for the full range of Asperger's and autism fact sheets and personal stories
at www.autism-help.org
Click here to
read more personal stories from parents of children on the autism spectrum, and from adults living with Autism, Asperger's syndrome
and other Autism Spectrum Disorders
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