I have not been blogging very long so I was (and still am) delighted to learn that someone had decided to “follow” my blogging efforts. Her name is Amy and she is the primary author of the blog Amy’s Amazing Aspie World. Her co-author is Ethan, Amy’s school-aged son. Ethan is also the principle focus of Amy’s blog posts, although in the bigger picture, her blog is about her family’s challenges helping Ethan navigate life with Asperger’s Syndrome. (There is a Mr/hubby, in Amy’s Amazing Aspie World, but I have not been able to find his name.)
I have experience with asperger’s, not as a parent, rather, as the treating therapist of an adult male. For data privacy reasons I’ll refer to my patient as Arthur although that is not his real name. Arthur was one those patients that I always looked forward to meeting with, which is not true of every patient I’ve met with over the years. I met Arthur during my final academic year of doctoral training when I was working at the Neighborhood Involvement Program (NIP) in the Uptown area of Minneapolis.
Uptown is a unique area of Minneapolis as it tends to draw tons of artists, college students, and individuals who meet a full-range of alternative life styles. Of all the clinics I have worked at which include clinics in upper middle class suburbs to a level four Department of Corrections prison for adult male offenders, NIP still remains my all time favorite place to work; because of the range of enclitic patients that came to NIP. NIP provides a sliding scale fee for services based on the individual’s income level. Most people who came to NIP are more accurately described as underemployed than unemployed. Making enough money to get by on, but usually not enough to afford individual health insurance.
Some of NIP’s services include a full service medical clinic, a rape crisis clinic (hot line/1:1 counseling), a mental health clinic (1:1 or groups, relationship counseling), along with programs for seniors, at risk youth, school programs, and more. NIP is able to provide these services, in part, because all the therapists except supervisors are volunteers (licensed professionals) and students completing a practica (master’s level) or internship (doctorate level). I was part of the latter group. The NIP mental health clinic had 19 students (17 master’s level; 2 doctorate level) during the year I worked there; plus five full-time paid supervisors.
When I met Arthur his primary diagnoses was depressive disorder with a secondary diagnoses of anxiety. His case file included about five years worth of case notes written by no less than five therapist who had passed through the clinic as part of their academic training. (Just like me.)
Arthur never missed his weekly scheduled session, nor did he fail to pay his $2.00 session fee. Just as Amy described Ethan as having a [significantly] higher IQ score than his age cohort or academic peers, so too did Arthur. He had a BFA from Penn State, two or three lessor degrees from various art oriented schools where he attended on academic scholarships, and was pursuing an associate degree in architecture. This degree would allow him to work, more or less, as an architect’s assistant. Arthur was an only child; both of his parents held a doctorate degree and professorships.
Arthur was polite, insightful on abstract or technical information, well dressed, and easy-going; except when around people he did not know well, such as at a social event. He longed to be in a romantic relationship with a woman, which was difficult because talking to women terrified him.
After five or six sessions meeting with Arthur I told my clinic supervisor and my academic supervisor that Arthur’s diagnoses were incorrect. He did experience depression and he did experience anxiety, but they were byproducts of something else. Ethan at 10-years-old has two advantages that Arthur (in his early 30s) didn’t have. First, and most importantly, Ethan’s Parents recognized that something a bit out of the norm was going on with Ethan, so they set a course to find out what it was and how to best address it. (Follow the link to Amy’s blog attached to IQ above.) Arthur’s parents didn’t begin connecting those dots until Arthur was well into his twentys. Second, socially there is less stigma attached to most developmental issues today than there were when Arthur was a young boy Ethan’s current age.
In addition to my supervisors I shared with Arthur my impression that he was incorrectly diagnosed. I did this because he had a right to know my professional opinion about his diagnoses. I also wanted his help to [re-]gather familial history, medical history, and so on. And I wanted him to understand that the reason he had not realized significant symptom reduction was because he had been receiving treatment for the byproducts of his problem, not the problem itself.
During the next several sessions Arthur and I revisited his major life event markers, including his academic experiences for grades K-12, and lots of information about his parents (which they willing gave him between our sessions). In addition I reviewed every case note or other form of documentation in Arthur’s file dating back to his first session with an NIP therapist. I also administered an MMPI-2 and wrote a report describing the findings.
The most important discovery I found tucked away in Arthur’s clinic file were the results of a research project Arthur had participated in at one of the Big Ten university’s two years earlier. I cannot remember the name of the assessment instruments given to Arthur as part of the research study. The purpose of the research focussed on Autism, which is a developmental disorder. I read the psychological report concerning the scores Arthur had received on each of the assessment instruments as well as the narrative of the clinician’s notes (also a doctorate level student at the Big Ten university).
I learned two important factors by finding Arthur’s participation in the autism research study. First, someone had placed the psychological report including individual assessment results into Arthur’s file and forgot about them; or, he or she didn’t understand them and didn’t seek out help. Second, for reasons I will never know or understand, the research team did not explain to Arthur that he fit squarely on the autism continuum.
Based on all the data I had available to me, and after consultations with both my clinic and academic supervisors, I re-diagnosed Arthur as having Asperger’s Syndrome (an axis I diagnoses) as his primary presentation. When I shared this information and my rationale for the diagnoses he let it sink in then developed this huge smile. The smile was really an expression of relief that the “problem” had now been identified.
Many people, if not most, have similar responses as Arthur’s huge smile. Knowing what the “problem” is, giving it a name, means that (a) it’s not something worse, and (b) now we can deal with it head-on.
Please don’t misunderstand my point here, we identified the correct DSM-IV-TR diagnosis, which allowed us to focus our efforts to helping Arthur better manage his asperger’s characteristics and symptoms. There is no cure for aspergers – – it’s life-long. Although there is evidence that with age symptoms and characteristics lessen.
Ethan has two advantages over Arthur, First his parents have been proactive, to identify that he has aspergers syndrome; and second, he has between 15 -20 years head start (over Arthur) on learning how to manage his asperger’s characteristics and symptoms. It also means that he will learn, while still young, how to highlight his numerous strengths rather than be engulfed by any difficulties the aspergers causes for him.
Yikes!!!!!!!!!!!!!!!! This has become a tomb rather than a post. I’ll strive to wrap this up. Broadly speaking, not all individuals diagnosed with aspergers syndrome are as intellectually gifted as Ethan and Arthur.
Generally speaking there are two defining characteristics of aspergers syndrome including, significant difficulties with the “ability to socialize and communicate.” Second, an “all-absorbing interest in specific topics” (per, DSM-IV-TR). Two examples from my work with Arthur. I took three weeks time off from NIP to go to Sophia, Bulgari as a guest professor at a religious college. (My church asked me to go and sponsored me.) Four weeks before my departure I began telling my patients that I would be out of the office for three weeks and what they should do in the event of an emergency. Arthur was my only patient that I told exactly where I was going.
When I told Arthur that I was going to Bulgari he spontaneously recited to me Bulgari’s entire political history and the names and period of rule for Bulgaria’s entire royal line. I was beyond impressed, I was amazed. He could provide this information for several European Monarchy’s. Arthur worked hard to push his asperger’s boundaries. Despite his fears of social interactions he sought out and began attending two local asperger’s support groups. These interactions took weeks of in-session preparations and practice and encouragement.
Ethan has so many advantages over Arthur. From my experience his number one advantages are his parents. So KUDOS to Amy’s Amazing Aspie World!
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