Reprinted with thanks to Jamie Freed MSW and the AANE

“I downloaded a questionnaire, gave it to my landlady and friend Joan who then administered it to me: Lay diagnosis: Mark has Asperger’s. What a feeling of excitement that gave me: maybe what had plagued me all my life had a name, and having a name might be something that could be treated, ameliorated, perhaps even fixed pray tell. It was a seminal moment… Upshot was a diagnosis of both Asperger’s and high-functioning autism, giving me a solid foot in each camp. Dr. Rosenn said two things that stuck: one, he wished he could’ve knocked the zero off my age of 70, and two, that I was in the 99th percentile in intelligence in some areas. Me, that intelligent? Oh, my… I’ve begun to gather the shards of my long-ago shattered self-esteem, seeing if I can fit them back together. It’s been slow going, but going nevertheless… My emerging transformation this past year could not have taken place were it not for AANE and Dr. Rosenn. It was like coming ashore after a life of bobbing up and down in a sea that seemed to stretch to infinity in all directions, a vast repository of hopelessness and despair. Unaccountably I never went under, never abandoned the struggle despite persistent and overwhelming odds.”

Excerpts from I Am a Survivor by Mark Morris Goodman

Adults with AS at AANE

AANE staff have learned about the struggles and talents of adults with AS—and some successful strategies for addressing their problems—through a decade of working closely with them. We have spoken in depth with over 300 adults with AS, ranging in age from 18-79, with many of their parents, relatives, and spouses, and with other professionals who know them.

During these ten years we have also developed a wide array of services and programs to meet adults’ needs, including:

• A free Asperger’s information packet with our own 50-page guide book.
• Free telephone and face-to-face interviews with AANE staff.
• Monthly social activities in Greater Boston, the North Shore, Western Massachusetts, and Maine.
• Support groups for parents of adults in Eastern and Western Massachusetts, and in Rhode Island.
• Adult discussion/support groups in Greater Boston and in Rhode Island.
• Book readings, book discussion group, and film discussion series.
• Internships in the AANE office.
• Classes in social skills, personal organization, and workplace survival.

AANE staff are committed to working in close, respectful partnership with everyone we serve. AANE was founded by the parents of young children with AS, acting in concert with professionals such as Dania Jekel, MSW, and Daniel Rosenn, M.D. However, adults with AS quickly became an integral part of our community. Over the past decade, adults with AS have become increasingly active partners in educating our community about AS, growing our organization, and setting AANE’s agenda.

Today, adults with AS serve in many roles at AANE: as members of our Board of Directors, including board President and Vice President; as members of our Adult Advisory Committee; as powerful self-advocates at Massachusetts Autism Spectrum Awareness Day, at our annual conference (Asperger Connections), and at Portraits of Inspiration, our annual awards dinner and auction. They recommend keynote speakers and workshop leaders for our conferences (including presenters with AS), and for book readings. They staff our events, write for our newsletter, contribute to our information packets, lead our book group, writing group and movie group, volunteer in our office, fix our computers, maintain our web site, and provide artwork, articles, and poetry for our newsletter.

Adults with AS can be eloquent and compelling teachers. They offer AANE’s parents and professionals a unique window into the minds of children with AS. They have opened our minds to other ways of looking at the world. Parents of children with AS take heart from knowing what adults with AS have accomplished even without the benefits of early diagnosis and intervention.

Characteristics of Adults with AS

Over the past three years, first as a volunteer and then in my capacity as AANE’s Director of Adult Services, I have had the privilege of really getting to know over 100 adults with AS. Typically, they come to AANE asking: “Why have I always felt so different from other people, and so cut off from them?” Usually (although not always) the answer is Asperger Syndrome.

In general, the adults I meet have survived years of being misunderstood and misdiagnosed. Many have experienced multiple failures in the arenas of work, independent living, and relationships. Nevertheless, the surprising thing is that—especially compared to a group of young children with AS—they can look pretty good. Many of the adults that we encounter at AANE do not conform to the AS stereotype. They fail to show certain Asperger traits, and/or they demonstrate abilities one might not expect. For example:

• Many maintain appropriate eye contact and have expressive faces.
• Virtually everyone has a sense of humor—and a quite a sophisticated one at that!
• Some have had successful careers—even careers that demand multitasking.
• Many can engage in conversation, taking turns speaking and listening.
• Many modulate their volume and tone of voice just as neurotypical people do, or closely enough.
• In a number of ways they demonstrate an interest in others and theory of mind (an ability to put oneself in someone else’s shoes). For example, I have heard adults with AS ask questions like: How has your health been? How is your learning disabled daughter doing? How did your reunion with your estranged adult daughter go? I wonder why X hasn’t come today—did he get that job, or was he just feeling too depressed?
• Some have developed positive, long-term interpersonal relationships.
• Some have good gross motor skills.
• Not all are good at math and computers!
• While some retain lifelong intense special interests, others have switched to new interests or broadened their repertoire; some have no readily identifiable or unusual intense special interests. (Some special interests have flowered into socially acceptable hobbies or careers.)
• Some are capable of lying, though generally because it is the “logical” thing to do in the situation.
• Sensory issues have generally moderated since childhood, so that adults can now tolerate or even enjoy some of the noises, textures, tastes, or visual stimuli that used to drive them over the edge.

All in all, adults at AANE comprise a widely varied group of bright, funny, articulate, caring, logical, honest, persistent and hard-working individuals—who just happen to think and perhaps behave a bit differently. How is it that many adults with AS can present so well—especially considering that they grew up before the diagnosis existed in the United States? (AS only appeared in the DSM-IV—the fourth edition of the Diagnostic and Statistical Manual, published 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 indeed survivors, as Mark Goodman so eloquently illustrates in his article I Am a Survivor. Some have survived primarily by finding niches, support systems, community that value them for their gifts, share their interests, and/or accept them with their limitations. Some have found a supportive, accepting home in contra dancing or animé or vacuum cleaner conventions, or structured religious communities. Others have adapted to the broader society’s expectations to a greater extent.

While one might think that neurotypical society would accommodate the needs of people with AS, the expectation is instead that people with AS adjust to the majority’s way of doing things. To an extent of course this is necessary, however the ideal would be to meet somewhere in the middle. It is generally believed that adults with AS do a poor job of adjusting, or worse, that they are not even trying. In fact, many ASPIES (as some people with AS call themselves) spend their lives trying valiantly to meet others’ expectations and adapt to the world around them. It is exhausting!

Many adults have learned independently what today is being explicitly taught to our children with AS. Without the neurology to support an “intuitive” understanding of social behavior, many adult ASPIES learned to spend their time carefully observing their environment and the people around them. In the immortal words of Temple Grandin, made famous by Dr. Oliver Sacks, each of them became an “anthropologist on Mars,” trying to make sense of the confounding behavior of their neurotypical peers. They struggled to understand why people were always telling them, “You’re so smart, why can’t you just:

• Go to a family function and behave? (Answer: The sensory and social stimuli overwhelm me!)
• Meet the deadline for completing this work assignment? (Answer: I have executive function difficulties—I can’t figure out what steps to take.)
• Just do what’s asked of you? (Answer: What you are asking seems illogical to me—that does not compute! Or: I am confused by the complexity of this multi-part task. Or: I just can’t figure out how to get started.)
• Tell me (spouse, friend, therapist) how you’re feeling? (Answer: I rely on thinking more than feeling—I have to think to know how I feel).

Through trial and error (after error after error), they managed to survive into adulthood, constructing more or less successful lives in the world where neurotypicals make all the rules. Relying upon cognition in place of intuition, they developed a working understanding of the world around them. They taught themselves some skills and strategies to use in particular situations. They learned to avoid, or to anticipate and manage, disturbing levels of sensory input. Over the years, they learned enough to almost “pass” for NT (neurotypical). In other words, ASPIES can look pretty good because they have learned strategies, tricks and skills to navigate through environments that are difficult or toxic for them, or to avoid these environments and to gravitate toward places that are more comfortable or manageable for them. They use their strengths to compensate for their blind spots or areas of disability.

Who Needs a Diagnosis?

AS is an “invisible” disability: no wheelchair or white cane alerts people to the fact that someone with AS has a real neurological difference, and is therefore legally entitled to receive appropriate supports and accommodations. Moreover, it is precisely the highest functioning adults with AS—those who have compensated so successfully that they are “passing” as NT, quirky, or “just a little eccentric”—who are even more likely than average to have their actions misinterpreted, and their needs ignored or dismissed. They can look good on the surface, but still face daily struggles.

It seems as though there may be a backlash building against giving the AS diagnosis—especially to adults. Some people express the opinion that AS is becoming the “diagnosis du jour,” the latest psychological or neurological fad, a diagnosis given too readily, indiscriminately. People seem to be asking: What purpose does the diagnosis serve? And if many ASPIES are functioning so well, why would they want a cumbersome, pathologizing label like “Asperger Syndrome”? Do they really have AS? Maybe they once had it—but if they look so good now, haven’t they outgrown it?

When an adult contacts AANE saying, “I’ve been reading about AS and I think I have it—what do I do now?” AANE staff members do not assume that these people are overly eager to get the diagnosis just so they can jump on the bandwagon and join the Asperger’s “club.” As we see it, people don’t embrace the diagnosis just because they want to belong somewhere—they embrace it because it fits. Rather than explaining individual symptoms, the AS diagnosis speaks to the person’s total life experience: a whole cluster of perceptions and behaviors, a way of being in the world.

We have seen that, after someone has endured a lifetime of feeling as if they come “from another planet,” receiving the Asperger’s diagnosis frequently brings profound relief, offering a plausible explanation for the root cause of one’s struggles and lighting the way forward. (The relief may be mixed with sadness; one must surrender the dream of one day becoming “normal”—whatever that may be.)

An AS diagnosis can be a useful tool for self-under-standing and self-advocacy. Once diagnosed, one can begin to look back at his or her life with new understanding. Self-blame can subside—less of “How can I be so smart and so stupid at the same time?” AS may also explain some of the person’s successes. Family members may become more accepting when they understand that there is a neurological basis for their loved ones’ behavior, struggles, and mistakes. One gains a tool for selectively explaining oneself to employers, community members, mental health professionals. One can apply the new self-knowledge to make smarter choices, and to avoid repeating past mistakes.

Consequences When Adults are Denied an AS Diagnosis

Far from seeing AS being over-diagnosed, AANE staff have encountered several instances where adults (and some children) are being denied a diagnosis because they do not meet one or more of the criteria that a clinician considers definitive, or because the person just seems to be too high functioning in general. For example:

1. was a successful salesperson and ran his own business, exhibiting a single-minded focus on his work. After ten years he fell apart, became depressed and anxious; he has not been able to return to work. He’s always had trouble reading non-verbal cues, is extremely disorganized, and easily sidetracked. He’s known he was different his whole life. In therapy groups he saw that others were connecting emotionally and had a shared understanding of the group experience that he did not. He has a close relative with an autism spectrum disorder. He can’t make simple, necessary repairs on his house or car because of his executive function challenges and depression. Yet he is told he “can’t have AS”—because he was in sales, a career generally considered impossible for a person with AS.

As a child, E. was homeschooled. Her parents were quite devoted and attuned to her needs. Due to their care, she did not experience many of the struggles and failures other children with AS encounter, and was never diagnosed. However, when she attempted to attend college, she learned from repeated failures that she cannot handle more than two courses in a semester. She now needs to get the diagnosis in order to qualify for accommodations in college—but with her atypical childhood history, she presents as having somewhat better social skills than one might expect. Therefore the psychologist seems hesitant to confirm that she has AS, even though she does have many traits consistent with the diagnosis.

We are concerned about this trend. When, with tremendous effort, a person with AS has adapted to the NT world, should the person be punished for that success by losing his or her diagnosis? Just because the person’s behavior and self-presentation have changed, does that change the underlying neurology? Should mental health professionals say that a high functioning adult does not have AS, or no longer has AS? Should society say that a high functioning adult with AS is not entitled to understanding, supports, and services, in the same way that someone with a more visible disability might be considered eligible?

It is especially difficult to get a balanced picture of an ASPIE’s functioning based on an interview in a therapist’s office. Meeting one on one with a sensitive professional, in a room with minimal sensory stimulation, and given permission to talk about him or herself, the person is likely to perform well, and Asperger traits may be masked. The same person might present very differently in a supermarket, at a cocktail party, or on a crowded bus!

Spending significant amounts of time with our adults, we see that ASPIES’ heroic efforts to adapt to the demands of the neurotypical world come with a high price tag—that even high functioning adults may be carrying a heavy burden of stress and anxiety—and that their adaptations may be only partially or intermittently successful.

Let me explain. When AANE board president Stephen M. Shore teaches neurotypical people about AS, he asks them to tell a story without using any words containing the letter “a.” This exercise lets workshop participants experience how exhausting and stressful daily interactions are for adults with AS: having to think through every utterance, worrying about whether that they will be misunderstood.

Given this baseline of anxiety, and the necessity of working overtime to understand and communicate, it’s no surprise that adults who are subjected to additional stressors may suddenly look significantly less neurotypical. The person’s somewhat artificial NT persona can be rather fragile. The mask can slip, and ASPIE traits can resurface as the person becomes less able to deploy those hard-won social skills and coping strategies. Dr. Tony Attwood even says that IQ drops significantly when the person becomes anxious.

So what does that actually mean to say that an ASPIE is high functioning? It can mean that the person functions very well in some arenas or environments–and not so well in others. Maybe someone does quite well at work because s/he has a specific skill set, interest, or talent (e.g. in computer science, bookkeeping, writing, visual arts). The employee with AS may also be successful because:

• The work environment does not overload the person’s senses or require multi-tasking.
• The job has clearly defined, explicit, predictable rules and routines.
• The job requires minimal social contact, or only highly structured contact with clearly defined expectations.
• The supervisor and co-workers are supportive, or have similar/compatible personalities.

Professional success, however, may mask the fact that these adults continue to struggle in some fundamental ways that could be well explained by a diagnosis of Asperger Syndrome. The same person who performs so well in a favorable work environment may not know how to create and maintain a satisfying life at home and out in the community. Then there are other adults with AS who can not function in a work environment, but can maintain a few friendships, be a successful public speaker, and live independently. Others can neither maintain employment nor sustain friendships, but can produce beautiful art (visual, written, musical). There are infinite permutations, 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” or conform to the stereotypes. When denied a diagnosis of Asperger’s, many adults will continue searching because they still know that something—they can’t figure out what—makes them different from most people and causes problems in their lives. Denying them a diagnosis robs them of self-understanding, and the understanding of others. They will continue to feel that they are living behind a glass wall: able to see what’s going on, but unable to make sense of it, unable to connect.

An adult whose AS is not recognized still runs significant risks of having others misinterpret his or her behaviors, sometimes with serious consequences. For example: During a stay in a hospital mental health ward, a young woman covered her body with a heavy mattress. Hospital staff interpreted this action as manipulative, provocative, and attention seeking behavior. They treated and medicated this young woman as an uncooperative, stubborn “borderline” patient. Seen through the lens of Asperger Syndrome and Sensory Integration, however, other interpretations become possible. Perhaps the patient is seeking the comfort of deep pressure exerted by the weight of the mattress; perhaps she is trying to get a break from social interactions. The patient would be perceived and treated very differently if her behavior were viewed through the Asperger lens.

Denying people a diagnosis also robs ASPIES of a community—yes, a community! Many ASPIES laugh at the irony that AANE offers so many social opportunities. Believe it or not, many adults with AS really do want to socialize—in their own ways, and up to their own personal limits. The opportunity to connect with peers provides a level of social comfort that most adults have never experienced before, and still do not find elsewhere in their lives. There is comfort in being with others who relate to the world similarly, and who have had analogous struggles. Adults feel that they fit in at AANE events, or in an on-line ASPIE community, or at Autreat, the annual retreat for people on the autism spectrum. In these settings, for the first time in their lives, they find that being an ASPIE is “normal”—it is the neurotypical people who are in the minority!—and adults find that connections run deep and acceptance is in the air they breathe. (For an eye-opening perspective, see http://isnt.autistics.org.)

After years of trying find a niche and make a life in the world, some ASPIES worry that it could all come apart because of how precariously it is crafted. Working so hard to fit in, all the while trying to understand or hide your neurology, comes at a very high price. In addition to the exhaustion, mentioned before, there is often a huge overlay of depression and anxiety on top of the Asperger’s. 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 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 be no surprise that these experiences so often lead to depression. As for anxiety, why not be anxious when, as one young woman says, “the world outside your door is scary”: illogical, unpredictable, full of crowded sidewalks and MBTA trains, store clerks who may want to talk to you, sensory assaults, and a myriad of things that are not within your control. If you are unable to generalize from past experience, every time you go out the front door is a new challenge.

Adults who have learned how to compensate may be denied the diagnosis because they look too good or do not quite fit the AS criteria. Or, because of their high anxiety and depression, they may look like something else is going on. AANE board member and book group facilitator Gyasi Burks-Abbott refers to the “Asperger’s pedigree” i.e., the number of diagnoses someone has received before stumbling upon Asperger Syndrome. These often 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. A person tries these on for size, but when the fit is poor, the diagnosis is not very useful in understanding oneself, connecting to others, or choosing a suitable life path, and one can waste a lot of time and psychological energy. As one young woman comments, “I was going to be the best schizophrenic there ever was. I learned all about it, and participated in a support group. The only problem was—I wasn’t schizophrenic!”

There can be genuine co-morbidity (dual or multiple valid diagnoses for the same person) but some symptoms can be adequately explained by AS alone. For many people, with the discovery of Asperger Syndrome, a whole collection of other diagnoses falls away.

Asperger Syndrome: A “Good Enough” Diagnosis

Science is only beginning to penetrate the great mysteries of brain structure and chemistry, neurology, hormones and genetics—and Asperger Syndrome is still a very young diagnosis. Right now the “syndrome” can present confusing, sometimes contradictory pictures. We may be looking at the results of using the same recipe with differing amounts of the same (or some of the same) ingredients! That is, adults with AS may have some or all of a list of traits, and they may have them in different degrees. In addition, some traits of AS overlap with traits of different conditions—we certainly recognize that not every person has Asperger Syndrome!

Where will we be in our understanding of AS in the next 10-20 years? It’s likely this diagnostic area will be further clarified and refined. Maybe in the future there will be a set of clearly defined AS subtypes, each with its own more precise criteria.

Imperfect and provisional as the current definition of AS is, we at AANE nevertheless find that the diagnosis is a useful and powerful tool. We take seriously the feedback from adults about the benefits of receiving and embracing the diagnosis. The difference it makes in their lives can indeed be dramatic, as you can see in the stories of Mark Goodman (above) and Elizabeth Avery (see page 18). Until additional clinical experience and research provide us all with better answers, does it matter exactly how correct or precise the diagnosis is for every adult? At AANE, we take a rather pragmatic approach and embrace diversity. We are okay with people not fitting neatly into all the AS criteria if it appears that the fit is “close enough” for the diagnosis to be useful. So often, AS seems like the best available explanation for the shape an adult’s life has taken.

Some people self-diagnose; unless there is an obvious mismatch, we welcome them into our community. Some people really need a professional stamp of approval; when that is denied, they will cut themselves off from the community and resume their lonely, unsupported journeys, vainly seeking answers to the conundrum of their lives.

We encourage other professionals to adopt a more flexible and inclusive set of criteria for giving or affirming the Asperger’s diagnosis—even for high functioning and high achieving adults. Adults with AS would benefit from more agreement among mental health professionals about the AS diagnosis; having one practitioner contradict another’s diagnosis can throw an ASPIE’s life into chaos.

Practitioners must attend to the details, but it is also important to see the big picture. In diagnosing adults, we feel that one should not apply the same criteria as when diagnosing children who have not yet learned compensatory skills. While we all wait for the Asperger Syndrome diagnosis to be refined, adults will benefit from professionals agreeing to evaluate them according to a broader, more flexible definition—one that takes into account adults who have compensated, accommodated, learned, and survived.

Let us be open to learning from the adults who have lived among us undiagnosed or misdiagnosed; let us learn from them and their stories of survival. Let us respect their conviction that they do in fact have AS. Unless or until there is something that provides a better explanation, why not consider Asperger Syndrome?