For more than two decades, AANE staff have learned about the talents and struggles of adults with Asperger profiles. Working closely and talking extensively with adults with Asperger’s, ranging in age from 18 to 83, along with their parents, relatives, and spouses, we have together explored successful strategies for addressing the challenges of Autism Spectrum differences. We have developed a comprehensive array of services and programs to meet the needs of adults and their families, including—but not limited to—telephone and face-to-face supports for adults and their families, social activities in multiple locations, discussion/support groups for adults, in-person and online support groups for parents of adults, book readings, and internships in the AANE office. Below is a review of some of the recurrent themes that have arisen out of our collective years of experience.
A Range of Successes and Struggles
Many adults with Asperger profiles appear to have very high levels 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 on the Autism Spectrum 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 could mask the fact that an adult also struggles in some fundamental ways that could be explained by an Autism Spectrum difference. There may be others who cannot function in a work environment, but can maintain one or a few friendships or acquaintances, be successful public speakers, 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.”
It’s Hard Work Fitting In!
How is it that some adults can present so well? Older adults with Asperger Syndrome grew up before the diagnosis existed in the United States; it first 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 we meet at AANE are survivors. Without the neurology that supported an intuitive understanding of social behavior, many adults with Asperger profiles learned to spend their time observing their environments 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, anxiety), complete this work assignment (executive functioning, processing speed), 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), they managed to survive into adulthood. Some adults with Asperger profiles develop an understanding of the world around them, a framework of how and where they do or don’t fit in; they learn and apply skills and strategies to use in particular situations, anticipate and manage upsetting sensory input. Imagine how absolutely exhausting it would be to do all of those things relying on cognition, not intuition. Nevertheless, after years of applying these skills and strategies, an adult with an Asperger profile can look pretty good, maybe even “passing”—or almost passing—for NT (neurotypical).
Anxiety and Depression are Common
So after years of practice and trying to fit in or find a comfortable place in the world, some adults with Asperger profiles 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. It is depressing when there is no obvious place in the world where you belong; when everyone else seems to know the rules by heart and you were never given the manual. The repeated trials 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 come as no surprise that these experiences so often lead to depression. And why not be anxious when “the world outside [your] door is scary”? It is unknown, unpredictable, full of people walking down the same sidewalk 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. When you lack the 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 be thinking constantly just to function somewhat comfortably in the world. Many adults with Asperger profiles operate from a baseline of anxiety. Faced with the additional anxieties that come from living in an unpredictable world, an adult with this profile can look pretty good in one setting and fall apart in another.
Misdiagnoses are Prevalent
And yet with all of these challenges, many adults have learned to approximate neurotypical behavior. Many adults have learned independently what today is 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 may look like something else is going on. AANE board member Gyasi Burks-Abbott refers to the “Asperger’s pedigree,” i.e., the number of diagnoses someone has received before stumbling upon Asperger Syndrome/Autism Spectrum difference. 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 an Autism Spectrum difference, the myriad diagnoses fall away, frequently leaving behind the depression and anxiety.
Diagnostic Criteria are Imperfect
When people begin to learn what’s expected in the NT world, develop new skills, and gain increased understandings of themselves, they can actually change their behaviors, becoming more outwardly focused, aware of and interested in other people. Does that change their 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 ASD, many of the adults that we meet at AANE would not necessarily fit the diagnosis. Most adults maintain pretty good eye contact. Virtually all of them have a sense of humor—and quite a 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 lives. (Successful multitasking at work may be 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 (the ability to put oneself in someone else’s shoes and even empathize). Some have had intense interpersonal relationships (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 for many adults with an Asperger profile: one-on-one, talking about oneself, with little environmental stimulation. With anxiety in check, AS traits may not be evident.
The Benefits of Identifying with an Asperger Profile
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 they welcome 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 Asperger Syndrome or ASD as an adult, s/he can begin to look back on 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 often, but not always, comes as 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 their 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.
The Future of Asperger Syndrome
Where will we be in our understanding of AS in the next 10-20 years? It is likely this diagnostic area will be further refined; maybe there will be Asperger subtypes, since the challenges that account for the Autism Spectrum diagnosis show up to different degrees in different people. Let us be open to learning from the adults who’ve lived undiagnosed or misdiagnosed, from their stories of survival. Let us encourage adults with Asperger profiles 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.