Aha, I’m an Asp

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by Stuart Spence

Preamble

This paper is substantially in the form in which it was presented on November 7^th, 2009 at the 20^th Annual Interdisciplinary Conference of the International Forum for Psychoanalytic Education (IFPE) in Seattle, Washington, titled Daring to Speak: Languages Spoken and Unspoken.  The talk was introduced with my comment that when presenting papers on subjects in my comfort zone, originally research physics, I had spoken from bullet points on a single 3 x 5 inch card: but I was reading this because it was such new territory for me.  However, one third of the way through, I was invited to expand on the detailed diagnostic criteria which had been only in footnotes, and this took so long that I was forced to put down the paper for the rest of the talk.  This was apparently well received, and I won’t try again to read a paper.

Introduction

This presentation: “Aha – I’m an Asp” relates to an “aha” moment late last year when I heard myself precisely described in an NPR program on Asperger’s Syndrome.

I had experienced a life-long difficulty recognizing faces – not so unusual in itself.  But my case was so severe that if I spent an hour talking with someone that I expected to meet the following day, I would put a sincere effort during the hour into studying their face, and quite likely still would not recognize them when we met again.   I had learned to brush it off with “I’m sorry, I can’t remember faces and I always forget names”; and I also have a quite tolerant wife with an excellent memory, so managed quite reasonably.  It wasn’t a consuming interest, but I was aware of it as a difficulty and wondered how it came about.  In 70 years, I’d gotten as far as realizing that as a child I’d always had difficulty looking at people’s faces; maybe that was related?

And then, listening to NPR, I heard a talk which described how a significant number of scientists and engineers and mathematicians could be very good indeed at their chosen fields, but not good at all at recognizing or relating to people.  As the radio program went on outlining the characteristics of Asperger Syndrome, I heard myself described with surprising clarity.  “Aha!” I said “I’m an Asp”.  (Since I wrote the abstract in June, I’ve learned that we’re generally called “Aspies”, and that the condition is often called AS or Asperger Syndrome rather than Asperger’s).  As soon as I got home, I asked Google for help, and found the AQ test which was online in Wired Magazine.  This Autism-Spectrum Quotient test was prepared at Cambridge University’s Autism Research Center under the direction of Simon Baron-Cohen (a cousin of Sacha Baron Cohen of Borat fame).  But, it’s really easier to ask Google for “Wired Asperger Cohen”

http://www.wired.com/wired/archive/9.12/aqtest.html

The test scores for neurotypicals (the name we Aspies use for everyone else) averaged 16.4, and Baron-Cohen found 80% of those diagnosed with autism or a related disorder scored 32 or higher.  By now I wasn’t surprised that I scored higher than 32.

So, I started buying books and researching Southern California support networks.  The Autism Research Institute in San Diego gave me a referral to a psychologist, Dr. Kyle Pontius, who specializes in Autism Spectrum Disorders, and whose office was within driving distance (for Californians, that’s 65 miles, easy if it’s not rush hour).  In less than a week I was in that office.   The appointment had to be set up quickly, because a week after that my wife and I were taking off for two weeks in Ireland and England, and I really wanted something to chew on during the trip.  And it was also at this time that I finally shared my six months of investigation with my wife, having hesitated because it was important to me to have a better idea of what was involved before beginning to work on it with her.

It had also become clear to me that my difficulty in speaking up for myself – those of you who know me may not all recognize this, because it’s sometimes overcompensated – was related to AS; and that I would never have a better opportunity to break free from this difficulty than by presenting at IFPE’s conference “Daring to Speak”.  It was from an internet café in Donegal that I submitted my abstract.  In the rest of this paper I’ll review the known characteristics of AS; my personal background and how the diagnosis was made; and then review the continuing work with Dr. Pontius.  I’ve also, thanks to a tip from Katherine Schwarzenbach, just made initial contact with an extensive research program at CalTech.

Characteristics of AS

Most readers of  this journal have some familiarity with Asperger Syndrome; but I’ll give a brief summary so we can be sure we’re all on the same page.  I had only superficial familiarity with it before I was swept into this research, now find that it has been one of the hotter topics of the last decade, and has even spawned a number of films and TV shows.

In the late 1930s Hans Asperger began writing about a particular kind of Autistic Personality Disorder which he observed in several children at his clinic in Vienna.  They were not intellectually retarded, instead had significant deficits in social interaction – and he may have had an early recognition of this condition because he shared many of the same symptoms.  Interestingly, another Austrian, Leo Kanner, was in the United States writing about similar observations at about the same time, and a Russian, Ewa Ssucharewa, some twenty years earlier had published similar work which fell into obscurity.

In the 1980s, after Asperger’s death, Lorna Wing in England reported on 34 cases of what she named Asperger’s Syndrome.  At the First International Conference on Asperger’s Syndrome in London in 1988 Gillberg & Gillberg presented the first operational diagnostic criteria:  Out of many books, Christopher Gillberg’s A Guide to Asperger Syndrome (Cambridge, 2002) is for me the most precise presentation of AS.  More easily available in the US, and useful in many ways is Tony Attwood’s The Complete Guide to Asperger’s Syndrome (Jessica Kingsley 2007)

General characteristics of AS include:

• Impairment in social interaction
• Repetitive patterns of behavior
• Clinically significant impairment in functioning (social or occupational)
• No clinically significant general delay in language
• No clinically significant delay in self-help skills
• Criteria are not met for another specific developmental disorder
• (one author’s set mentions clumsiness)

The broad criteria for diagnosis are based on meeting a number of the above.  As I checked off each of my diagnostic matches, I was surprised at the emphasis on repetitive movement patterns, and said “but, I don’t have any”.  After several weeks of puzzling over this, I realized: “Oh goodness, of course I do” – I’m doing it all the time, but do it without vocalizing or moving.  In the background, I’m continually thinking a series of patterns or counts  up – down – down – up or 1-2-3 1-2-3 or equivalents.

I would like to provide the complete diagnostics: ? ^{[1], [2]}

By the 1990s Asperger’s papers had been annotated & translated and in 1994 the condition was included in the fourth edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) – where it was referred to as Asperger’s Disorder.  More recently, there has been a strong trend to remove AS from being classified as a Deficit or Disorder – it’s a difference, with value as well as difficulty.  Gillberg writes that, in view of all the remarkable people, from Einstein to Wittgenstein, who almost certainly had AS:

“Maybe one could even speculate that historic progress has quite often been made by people with autism spectrum conditions. The perseverance, drive for perfection, good concrete intelligence, ability to disregard social conventions, and not worry too much about other people’s opinions or critiques, could all be seen as advantageous, maybe even a prerequisite for certain forms of new thinking and creativity.”

And many with AS function quite well in society – I did – but Attwood warns that the Asperger kids are working twice as hard as anyone else at school and afterwards, because of having to use their intellects for learning the social curriculum as well as the academic.

Prevalence:

Prevalence: Because of the imprecision of the diagnostics, there’s great variability in estimates of prevalence of AS.  DSM-IV finds less than 1 per 1000; according to the more generous Gillberg criteria, there are between 3 and 5 per 1000, with several times more males than females – although this ratio could be due to greater difficulty in identifying AS in girls.  And then, on just before my presentation of this paper, the New York Times reported that DSM-V plans to drop the term Asperger’s altogether, and simply group it within the range of Autistic Spectrum Disorder – which may or may not prove useful.  In 2002 Gillberg had written:

“Currently, its seems to me that Asperger Syndrome is often preferred over autism in cases meeting both sets of diagnostic criteria.  Autism still has a ‘pessimistic’ ring to it, whereas Asperger Syndrome, to many, does not carry equally negative connotations.  This may change in the future, once it becomes generally accepted that autism spectrum disorders are not extremely rare, and that high-functioning cases, contrary to earlier beliefs, by far outnumber those that are very severely affected and low functioning”…

I’ll continue to use the term.

Studies have suggested that AS may be related to a different wiring in the brain, and it definitely shows a genetic component.  For example, Baron-Cohen et al. in 1998 looked at the following six conditions in the families of students: Language Delay, Schizophrenia, Anorexia, Downs Syndrome, Manic-Depression and Autism Spectrum.  The study compared about 600 Math, Engineer, Physics with a similar number of English or French Literature students and with their relatives out to first cousins, almost 10,000 in each group.  The numbers adjusted to be per 10,000 were

• (sciences vs. language)
• Language Delay: 34 vs. 44
• Schizophrenia: 18 vs. 20
• Anorexia: 25 vs. 21
• Downs Syndrome: 6 vs. 4
• All these numbers are essentially equal; but
• Manic-Depression: 50 vs. 100 in families of sciences vs. literature, and
• Autism Spectrum: 6 vs. 1 in sciences vs. literature specialties.

My greatest interest in entering the CalTech study is to find out if I process my sympathy, empathy, affection, etc. in different parts of my brain from those regions used by NeuroTypicals.  It is worth noting that most Aspies definitely experience strong emotions – it’s just that we have more difficulty communicating them.  In fact, it’s been noticed that many with AS have exquisite sensitivity to the emotional state of those around them – but, again, may have difficulty understanding or using that knowledge.   My introductory interview at CalTech is set for Nov. 16.  The other continuing work is to use this new information to try to understand and overcome the interpersonal difficulties that I’ve experienced throughout my life.

My Story

I was born in the North of Ireland, to an aggressively self-assured father, and an American mother who, I believe, may not have walked or talked until she was four – but who then caught up to earn the highest academic honors in college.  Mine was an easy delivery, a month premature, but over six pounds,  At the outbreak of the war in Europe, I was eighteen months old, and was evacuated to the US with my mother and older brother, while my father – too old for service in that war – stayed in Belfast.  I’ve heard that my early language was extremely precise, but otherwise I seemed a normal kid, bright but somewhat reserved.  My mother told the story that as a child I would not join in others’ activities, but rather, start my own play with such intensity that pretty soon all the others had come over to join me.  Fiercely independent, I was called.  For various reasons we moved many, many times, and I blamed our moves for the fact that I didn’t have any friends outside of the family.  And I had as many battles as good times with my brother.  California was the only place we stayed long enough for me to grow attached – that’s probably why I’m living here now.  At the end of the Second World War, we went back to be with my father, and I started elementary and high school and college in the United Kingdom.

Already in grade school I was given the nickname ‘Dormouse’, because I slept – or, rather, hid – in the back of the class, and did not dare speak up even though I knew the correct answer.  I felt as if I were getting on adequately at school, academically, despite having difficulty doing things the way the teachers wanted, and with the other kids.  But, it’s interesting to remember an occasion when my parents asked me if I’d like to have a friend join us at a touring opera performance, and I invited my headmaster! (who accepted).  Then I went on to high school at Winchester, a boarding school in England that attracted academically gifted students from throughout the United Kingdom.  For a time, there, I was identified as a dummy (their term was ‘thick’).  And in the unforgiving atmosphere of an English Public School, my interpersonal difficulties were even more apparent, but here were explained by my “American-ness”.   And, now, Irish-ness.

I can now look back and recognize several AS traits.  Clumsiness such that in ROTC drill the commands were always “Quii..ck March – Late Spence” and “Lee..ft Turn – Late Spence”; and single-mindedness (no multi-tasking here) so that when called on to umpire I could never maintain the counts if I so much as looked at anything else, or even watched the play.  And I was constitutionally unable to dissemble, to tell a ‘white lie’.  I even have difficulty saying “I’ll see you tomorrow” – I have to use a provable statement “I’m looking forward to seeing you tomorrow”.  Hardly guaranteed to endear me to my peers, especially when combined with my awkward social responses.  It was expected in the vicious boarding school atmosphere that there would be kids identified as ‘the most unpopular’ for a term or two: but I was ostracized for three years.  I wasn’t skilled at sports, but I was strong and an uncomplaining hard-worker, so that finally brought me out onto the fringes of the accepted.

When it came time to compete for an academic scholarship to university, I was terrified that I would be ‘found out’ by failing the exams.  Instead, on the basis of an interview, I was awarded a scholarship to Balliol College, Oxford, to read physics.  The fear of being unmasked by an exam was not, in fact, so far-fetched.  I have always had a terrible memory for facts and figures, and didn’t develop work-habits to compensate.  In an exam I was painfully slow: since I could never remember a formula, I had to go back and derive it from first principles.

After high school I had a few months training at a family business, and then university where I had a wonderful time, albeit with continuing poor organization of my studies – fortunately, just good enough to get me into graduate school in the US.  I had only applied to two graduate schools, Berkeley and Stanford: again I chickened out by selecting Stanford – I’d heard that a lot of grad students were thrown out of Berkeley, but at Stanford, once you were in you stayed in.  And in: half my class still had not completed their doctorates when I finished after 6½ years.  At age 11 I had decided I was going to be a scientist, and didn’t even question that until I had a PhD twenty years later.

Possibly as a way of compensating for not reading people intuitively, I had found myself consciously looking for their psychological motivations, rather than objective ones.  I would often explain people’s actions as based on unconscious processes, much to the consternation of those around me, particularly in the North of Ireland.  It had become clear to me that I needed to get away from that country, a land that doesn’t have a great deal of sympathy for people with differences, let alone an interest in psychology.  My father exemplified this when he’d say “you don’t really feel that”.  His other favorite phrase was “Don’t bother me with facts, I know” , hardly an invitation to try to work out interpersonal difficulties.  Now I know these motivations I’d identified were called unconscious processes: at the time I was merely relying on my scientific discipline by offering the simplest explanation I could find for an observation. and, of course, reviewing and revising it if the hypothesis didn’t fit.^[3] I didn’t have any formal background in the field of psychology, but was definitely interested and ready to learn when I met a young M.D. named Judy Vida.

When we met, she was in a psychiatry residency at Los Angeles County USC medical center (a program still valuing dynamic psychiatry in those days) and I had a physics post-doc at Stanford.   We immediately found a tremendous overlap in interests – and in values – and still do. But, we had lots of differences, too – she could remember and organize effortlessly, while, at school I used to take four hours effort to memorize a sonnet; she was definitely a morning person, and I could only get down to something when everything had quieted at night.  Attwood tells us that

“sometimes the person with Asperger’s syndrome appears to have created a mental ‘job description’ for a prospective partner, searching for a suitable ‘applicant’ that can compensate for recognized difficulties in life. Once a candidate has been found, that person is pursued with determination that can be hard to resist. One of the ‘job requirements’ is having advanced social and maternal abilities. Thus, an attractive partner will be someone who is at the opposite end of the empathy and social understanding continuum.”

I need hardly tell you that Judy scored significantly on the other side of the average from my AQ test results.

Over the first few years of our marriage, when we were starting a family, Judy was starting psychoanalytic training, and I started a high-tech business to take advantage of the newly-invented microprocessor.  Looking back, that company made some great technical advances, and some not-so-great management decisions, including my taking on a partner who didn’t respect my contributions.  The company’s eventual bankruptcy proved that starting in your garage doesn’t guarantee your becoming Hewlett-Packard or Apple.  Judy couldn’t understand our technical problems, and I had a hard time explaining my much greater difficulties with personnel relationships, my tendency to micro-manage, inability to work within a group.  Instead we talked about everyday stuff, or Judy’s work.  Unlike the high-tech field, I understood the words Judy and her colleagues used (or at least I thought I did!) so it was much easier for me to talk with her and her friends.  But, even here I found an awkwardness, despite ample goodwill, where I often realized that I couldn’t find the right moment to join a conversation, too many times having to say “I’m sorry, I thought you’d finished”.  Listening for a logical completion of a presentation is the Aspie’s way, but I’ve learned it doesn’t work in the nuanced give-and-take of the NeuroTypical marketplace.  And our kids?  They seem to have avoided most of the classic Asperger symptoms, and are doing quite well, although they had plenty of difficulty with mine.  I’m hoping that this new understanding will help us resolve some of the outstanding difficulties with them.

So, Judy and I muddled on – both working pretty hard at it – and we spent much of what little spare time we had in exploring a shared passion for contemporary art.  It was a talk by Judy subtitled “What One Psychoanalyst Learned From Contemporary Art” that brought her to IFPE in 1999, and I took advantage of IFPE’s generous membership criteria and have been a member since 2000.   My participation in IFPE was welcomed, and I slowly began to take part in discussions, even though it was obvious to me that having a non-analyst participate made a few of the members acutely uncomfortable.  This is the first time I have Dared to Speak on my own account – but this recent investigation has given something essential to me for me to speak about.  Now that I – we – have this understanding, we are beginning to make sense of so much that was unexplained in the past.  We’re avoiding the resentment that might come because of the delay in diagnosis – the wasted opportunities – but we’re also making sure we do not lump any and all difficulties into a blanket “Oh, that’s because of AS!”  We’re just beginning to work on it.  And the work is turning up unexpected treasures.  Gillberg compares four primary diagnostic tests for AS, and warns “don’t ignore co-morbidity”.  A few pages later, he lists the DSM-IV criteria for Obsessive-Compulsive Personality Disorder:^[4] requiring a match of four out of the eight.  I scored at least seven out of eight on that one.

Conclusion

One of the things Tony Atwood has written:

“The reader will be interested to know that I have discovered a means of removing almost all of the characteristics that define Asperger’s syndrome in any child or adult. This simple procedure does not require expensive and prolonged therapy, surgery or medica­tion, and has already been secretly discovered by those who have Asperger’s syndrome. The procedure is actually rather simple. If you are a parent, take your child with Asperger’s syndrome to his or her bedroom. Leave the child alone in the bedroom and close the door behind you as you walk out of the room. The signs of Asperger’s syndrome in your son or daughter have now disappeared.”

This is a valid observation – I teared up when I read it – but, I began to think more and more that it misses an important element.  The Aspie intellectually recognizes the social isolation, and doesn’t regard it as optimal, but doesn’t know intuitively how to correct it.  At least, this is true for me, and, I believe, for others.  I was struck by the difference in my response to two books related to AS that I read. One is Look Me in the Eye, an autobiography by John Elder Robison, who became the staging creator for the rock group KISS’s pyrotechnic extravaganzas, and then was too scared to follow up an invitation to LucasFilm – where he clearly belonged; and the other is the curious incident of the dog in the night-time, a novel by Mark Haddon about an AS kid’s voyage of discovery.  In that first book I have an underline or post-it on almost every page noting similar experiences, resonances, even though Robison and I are not very much alike.  The second left me cold, even though it’s a finely observed portrait of an Asperger’s kid.  The difference is that the dog incident kid knows how he is, and doesn’t show any interest in being any other way.   The KISS kid was and is all the time struggling to find a better way to get on in the world.   Probably, that’s why I can’t seem to get interested in reading anything other than autobiography.  And, that’s why I’m starting on this journey of exploration.  At IFPE presentations interactive dialogue following presentations is typical and in fact essential, and I stated that I hope that in our discussion you can help me with further insights into the AS-NT interface.

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[1] Table 2.1 Diagnostic criteria for Asperger syndrome    (according to G&G1989, Gillberg 1991)

Social impairment (extreme egocentricity) (at least two of the following):
(a) difficulties interacting with peers
(b) indifference to peer contacts
(c) difficulties interpreting social cues
(d) socially and emotionally inappropriate behaviour

2.  Narrow interest (at least one of the following):
(a) exclusion of other activities
(b) repetitive adherence
(c) more rote than meaning

3.  Compulsive need for introducing routines and interests (at least one of the following):
(a) which affect the individual’s every aspect of everyday life
(b) which affect others

4.  Speech and language peculiarities (at least three of the following):
(a) delayed speech development
(b) superficially perfect expressive language
(c) formal pedantic language
(d) odd prosody, peculiar voice characteristics
(e) impairment of comprehension including misinterpretations of literal/implied meanings

5.  Non-verbal communication problems (at least one of the following):
(a) limited use of gestures
(b) clumsy/gauche body language
(c) limited facial expression
(d) inappropriate facial expression
(e) peculiar, stiff gaze

6. Motor clumsiness
poor performance in neurodevelopmental test

[2] Table 2.4 Diagnostic criteria for Asperger syndrome   (according to DSM-IV = APA 1994)

1. Qualitative impairment in social interaction (as manifested by at least two of the following):

1. marked impairment in the use of multiple non-verbal behaviours such as eye-to-eye gaze, facial expression, body postures and gesture to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity

2. Restricted or repetitive and stereotyped patterns of behaviour, interests and activities (as manifested by at least one of the following):

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, non-functional routines or rituals
3. stereotyped and- repetitive motor mannerisms (e.g. hand- or finger-flapping or twisting, or complex whole-body movements
4. persistent preoccupation with parts of objects

3. The disturbance causes clinically significant impairment in social, occupational or other important areas of functioning

4. There is no clinically significant general delay in language (e.g. single words used by age 2 years, communicative phrases used by age 3 years)

5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than in social interaction), and curiosity about the environment in childhood

6. Criteria are not met for another specific developmental disorder or schizophrena

[3] After the presentation, Patrick Nalbone, an analyst who has studied Theory of Mind from a systems point of view, made the very helpful comment: “you had created a model of the person you were observing, and used the model to predict their actions”.  That was exactly what I’d been doing.  I further noted that I had always been most interested in exploring any discrepancies that I observed from the predicted behavior: that was how I learned.  I have often been disturbed that neurotypicals have a tendency to accept only the data that agree with their hypotheses.]

[4] Table 2.6 Diagnostic criteria for obsessive-compulsive personality disorder (DSM-IV)

A pervasive pattern of preoccupation with orderliness, perfectionism and mental and interpersonal control, at the expense of flexibility, openness and efficiency, beginning by early adulthood and present in a variety of contexts (as indicated by at least four of the following):

1. is preoccupied with details, rules, lists, order, organisation or schedules to the extent that the major point of the activity is lost
2. shows perfectionism that interferes with task completion (e.g. is unable to complete a project because his or- her own overly strict standards are not met)
3. is excessively devoted to work and productivity to the exclusion of leisure activities and friendships (not accounted for by obvious economic necessity)
4. is overconscientious, scrupulous and inflexible about matters of morality, ethics or values (not accounted for by cultural or religious identification)
5. is unable-to discard worn-out or worthless objects even when they have no sentimental value
6. is reluctant to delegate tasks or to work with others unless they submit to exactly his or her way of doing things
7. adopts a miserly spending style towards both self and others; money is viewed as something to be hoarded for future catastrophes
8. shows rigidity and stubbornness

Stuart Spence has a PhD in physics, and has a long-term interest in psychoanalysis: he has been an active IFPE member since 2000.