AANE staff have learned about the talents and struggles of adults with AS—and some successful strategies for addressing their challenges—through over a decade of working closely and talking extensively with over 400 adults with AS, ranging in age from 18-79, and with their parents, relatives, and spouses. We have developed a comprehensive array of services and programs to meet adults’ needs, including an Asperger’s information packet with our own 50 page guide book, telephone and face to face interviews with adults and/or family members, monthly social activities in three locations, a parents of adults support group, adult discussion/support groups, book readings, and internships in the AANE office.
This information is a review of some of the general thoughts about living with Asperger Syndrome and we hope these will be helpful.
Many adults with AS appear to have a very high level of functioning—but what does that actually mean? It can mean that one functions very well in some arenas and not well in others. Maybe someone does quite well at work because s/he is extremely bright and well suited to the job. For example, an employee with AS may be successful because the work environment does not overload the person’s senses or require multi-tasking, or because the social contact on the job is minimal or highly structured, with clear expectations, or because the people at work are supportive, accommodating, or have similar/compatible personalities. This same person may not have or know how to create or maintain a satisfying life outside of work. Success for adults in our society usually means success at work; success in that arena may mask the fact that they also struggle in some fundamental ways that could be explained by Asperger Syndrome. There are others who cannot function in a work environment, but can maintain one or a few friendships or acquaintances, be a successful public speaker, and live independently. Maybe someone can neither maintain employment nor sustain friendships, but can produce beautiful art (visual, written, musical). There are infinite combinations and all could be considered Asperger Syndrome, depending on the lens through which you look. At AANE, we suggest that the lens be broad enough to accommodate adults with AS who may not “look the part.”
How is it that some adults can present so well? Adults with Asperger Syndrome grew up before the diagnosis existed in the United States; it appeared in the DSM-IV in 1994. The diagnosis may not have existed but the adults did—and they needed to find ways to survive. The adults that I have met are survivors. (See Mark Goodman article I Am A Survivor). Without the neurology that supported an intuitive understanding of social behavior, many adults with AS learned to spend their time observing their environment and the people around them. They tried to make sense of the confounding behavior of their peers and tried to understand why people were always telling them, “You’re so smart, why can’t you just…(fill in the blank): go to a family function and behave (sensory, social and anxiety), complete this work assignment (executive function, processing speed), just do what’s asked of you (illogical, theory of mind), tell a therapist how you’re feeling (reliance on thinking more than feeling). Through observation and trial and error (after error), many managed to survive into adulthood. Some adults with AS develop an understanding of the world around them, a framework of how and where they fit or don’t, learn and apply skills and strategies to use in particular situations, anticipate and manage disturbing sensory input. Imagine how absolutely exhausting it is to do all of those things relying on cognition, not intuition. Nevertheless, after years of applying these skills and strategies, an adult with AS can look pretty good, maybe even “passing”—or almost passing—for NT (neurotypical).
So after years of practice and trying to fit or find a comfortable place in the world, some adults with AS have put together a life and many live with the worry that it could all come apart because of how precariously it is crafted. Working so hard to fit in, to understand or hide your neurology comes with a very high price tag. In addition to the exhaustion, mentioned before, there is often a huge overlay of depression and anxiety on top of the basic neurological condition of AS. It is depressing when there is no obvious place in the world where one belongs; when everyone else seems to know the rules by heart and you’ve never been given the manual. The repeated trial and failures to make friends, work, live independently, manage your own affairs and even succeed in therapy are constant reminders of being “less than;” it should be no surprise that these experiences so often lead to depression. Why not be anxious when “the world outside [your] door is scary”. It is unknown, unpredictable, full of people walking down the same sidewalk that you are, crowded MBTA trains, store clerks who may want to talk to you, sensory assaults and a myriad of things that are not within your control. With a lack of intuitive ability to generalize, every time you go out the front door is a new challenge. More or less neurotypical people do not have to think just to function somewhat comfortably in the world. Many adults with AS operate from a baseline of anxiety. Faced with the additional anxieties that come from living in an unpredictable world, an adult with AS who can look pretty good in one setting can fall apart in another.
And yet with all of these challenges, many adults have learned to approximate neurotypical behavior. Many adults have learned independently what today is currently being explicitly taught to our children with AS. Adults who have learned how to compensate, learned tricks and strategies, crafted some sort of life for themselves, may be denied the diagnosis because they do not quite fit the criteria. They may look too good or, because of the overlays on the Asperger neurology, they look like something else is going on. AANE board member Gyasi Burks-Abbott refers to the “Aspergers pedigree” i.e., the number of diagnoses someone has received before stumbling upon Asperger Syndrome. These incorrect or incomplete diagnoses may include: ADHD, Bipolar Disorder, Schizophrenia, Borderline Personality Disorder, Obsessive Compulsive Disorder, Intermittent Explosive Disorder, Major Depression, Generalized Anxiety Disorder, Social Phobia, Narcissistic Personality Disorder, Oppositional Defiant Disorder, Sensory Integration Dysfunction, or Autism: Residual State. There can be genuine co-morbidity (dual or multiple diagnoses simultaneously) but many symptoms can be explained by AS. For many, with the discovery of Asperger Syndrome the myriad of diagnoses fall away, frequently leaving behind the depression and anxiety, often bi-products of Asperger Syndrome.
When people begin to learn the skills, learn what’s expected in the NT world plus have an increased understanding of themselves, they can actually change their behaviors, become more outwardly focused, aware of and interested in other people. Does that change the underlying neurology? Should a high functioning adult lose or never receive the diagnosis that could prove to be so helpful?
Considering the diagnostic criteria for AS, many of the adults that I meet would not necessarily fit the diagnosis. Most adults maintain pretty good eye contact. Virtually all of them have a sense of humor—and a quite sophisticated one at that! Some have had successful careers, even careers that demand multitasking—although the ability to juggle multiple tasks may not carry over to their home life. (Multitasking at work was often driven by an intense interest and a clear road map—a highly structured work environment.) Many adults can take part in the give and take of conversation, taking turns speaking and listening. They demonstrate theory of mind in a number of ways (an ability to put oneself in someone else’s shoes and even empathize). Some have had intense personal connections (positive and lasting or not). Some have good gross motor skills. Not all are good at math and computers! Some are capable of lying (though generally because it is the “logical” thing to do in the situation). Some avoid certain loud noises but gravitate to others. It is especially difficult to diagnose based on presentation in a therapist’s office since that is a setting that would be comfortable to many adults with AS: one on one, talking about oneself, with low environmental stimulation. With anxiety in check, traits may not be evident.
It seems that no one is looking to be in this “club” but many people seek answers to explain the outsider status that has defined their lives. When one welcomes it, it is usually because it fits where other diagnoses have not and because they have endured a lifetime of not understanding why their lives don’t seem like others, why they feel they are “from another planet.” So when someone receives the diagnosis of AS as an adult, s/he can begin to look back at his or her life and understand it in a new light. It may explain some of the successes as well as the many challenges. It is often, but not always, a relief. The self-blame (“How can I be so smart and so stupid at the same time?”) can subside; adults can often forgive themselves for some things that went wrong. They can sometimes forgive their caregivers, parents and teachers, who were also operating without full information. Going forward, they can apply the new knowledge to help avoid previous pitfalls. People don’t embrace the diagnosis because they want to belong—they embrace it because it fits. The difference it makes in someone's life to have this understanding is profound. It provides a community, a place where Asperger neurology is typical and being NT is in the minority.
Where will we be in our understanding of AS in the next 10-20 years? It’s likely this diagnostic area will be further refined, maybe there will be AS subtypes since the challenges that account for the AS diagnosis show up to different degrees in different people. Let us be open to learning from the adults who’ve lived undiagnosed or misdiagnosed and learn from them and their stories of survival. Let’s encourage adults with Asperger’s to understand themselves to the best of their abilities so that they can self advocate, asking for what they need and offering solutions that may alleviate their challenges and leverage their many strengths. AANE will be here as a resource, a support, and a community along the way.