Terra Incognita Autism spectrum disorder has dominated headlines for the past 15 years, with most of the emphasis on children and early identification. But what about the children, now adults, born before this new awareness? How do adults on the spectrum navigate the unknown landscape of the neurotypical world, and how can SLPs help them? Features
Features  |   April 01, 2014
Terra Incognita
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Special Populations / Autism Spectrum / Early Identification & Intervention / Features
Features   |   April 01, 2014
Terra Incognita
The ASHA Leader, April 2014, Vol. 19, 48-54. doi:10.1044/leader.FTR2.19042014.48
The ASHA Leader, April 2014, Vol. 19, 48-54. doi:10.1044/leader.FTR2.19042014.48

“… A reminder of darkness: the girl in the Queen’s Bar. I met her weeping across Leicester Square when the leaves had dropped and made the pavements slippery; she went into the vestibule of the Empire Cinema and veered violently away again (that wouldn’t do), settled at last on a high chair in the Queen’s Bar, made up her face, had a gin and tonic; I hadn’t the nerve to say anything and find out the details. Besides, it’s always happening all the time everywhere. You don’t weep unless you’ve been happy first; tears always mean something enviable …”

—Graham Greene, “Journey Without Maps” (1936)

In 1935, British novelist Graham Greene embarked on a terrifying four-week journey through the uncharted, cannibal-infested interior of Liberia without a map, a guide or a clue. He had only his intellect and instinct to keep him alive. The result was a detailed, nuanced account of every scene and encounter through the eyes of someone experiencing a sensory and anxiety overload. Greene ultimately returned to a more civilized and predictable environment where he could reflect, but such is not the case for millions of people diagnosed with autism spectrum disorder.
For them, the world can continue to be a source of confusion and sometimes fear as they attempt to interpret missed social cues and unexplained etiquette rules. One person with ASD described the experience as “having to constantly go through a cultural immersion program every day.”
Over the past decade the rate of ASD diagnosis has climbed steadily, with the latest Centers for Disease Control and Prevention numbers indicating that 1 in 68 children has the diagnosis. Much of the increase has been attributed to earlier and better identification, which begs the question: What about children born before these diagnostic and early intervention breakthroughs?
These children, now adults, have been here all along, many of them navigating a seemingly unknown neurotypical world—a senseless terra incognita—unaware of their disorder. But some of them, whether propelled by their own suspicions or those of others, have pursued testing and received an ASD diagnosis as adults. Once diagnosed, these adults often look for ways to better understand their world and learn more about the way their brains work. Speech-language pathologist Lisa Geary, Towson University assistant professor and director of the Adult Language Pragmatics Skills Group at the Hussman Center for Adults with Autism, says that many times, depending on the adult’s self-awareness, these clients are very self-motivated.
“They’re all interested in becoming successful with their relationships because they want what we all want—to be accepted,” Geary says. “There is this mindset that adults have reached their potential and that’s not true. We all continue to grow with experience, and what they need is a safe place to come to practice their skills and get support.”
This population is the new frontier in treatment because they can still benefit from intervention, agrees Kim Murza, an assistant professor of communication sciences and disorders at the University of Northern Colorado (see “In the Limelight,”). In her own (albeit early) research on properties of successful social language intervention with adults on the spectrum, she sees the crucial link between mastering these skills and successful professional and personal outcomes.
“I’ve heard from them that they had to deal with this on their own for so long and had to become independent without much help,” she says. “And much of the time they know what they are supposed to do, but it’s doing it and doing it successfully that cause problems.”
Here are four of these adults’ stories. On being diagnosed with ASD, some were sad, some were relieved, and all were surprised to learn the root of their struggles. But they have moved on and, like Graham Greene in Liberia, continue to traverse a sometimes uncomfortable world—without the benefit of a map.
Tabula rasa no more
What “Michael” wants more than anything—to make his fledgling consulting business work and to find a life partner—rest largely on his ability to read social cues. Both are within his grasp: He is bright, engaging and definitely motivated. But his social difficulties can throw a wrench into things, he says.
“The ability of people with autism to mind-read is a bit damaged and that can have so many consequences,” he says. “I have a really hard time putting myself in other people’s shoes.”
Michael is 43 and lives in Colorado. He was diagnosed with Asperger syndrome at 36 and has been reading books on autism ever since. His current reading is “Mindblindness: An Essay on Autism and Theory of Mind” by Simon Baron-Cohen—he’s finding it useful and will find a way to incorporate some of the ideas within the pages. (“It’s good to know why something does or doesn’t work.”)
And that is how it has been going for him for the past seven years—he has learned about mindblindness from Baron-Cohen and social skills and vulnerability from Brene Brown—and has basically become his own advocate, counselor and therapist through self-education. His thirst for information comes from a desire to “do things right,” and to avoid reliving his past.
And he appears to come by this desire somewhat naturally. Michael recalls that his parents “were not very feeling or emotional.” He also can see that his father showed tendencies toward being a perfectionist—something he struggles with, too.
“I am definitely a perfectionist and it’s horrible,” he says. “I beat myself up all the time when things go wrong, and analyze and re-analyze how to do them better next time. It causes a lot of anxiety.”
And it’s the things that have “gone wrong” in the past that led to his diagnosis. Michael’s marriage ultimately dissolved, partially as a result of his disorder. Married young (“so very young,” he says), Michael recounts that he and his ex-wife struggled for years with miscommunication and unmet emotional needs. He now knows his ex was an “indirect communicator” who never said directly what she wanted or needed. For someone like Michael, who needs much more concrete communication, this difficulty was insurmountable.
“I remember times when I’d see her crying and I didn’t react because I honestly didn’t know what I was supposed to do,” he says. “I didn’t know that I needed to go ask her what was wrong or hug her. I was a complete blank slate—and that made things worse.”
It was his ex-wife’s sister, an educator who worked with a colleague on the spectrum, who first mentioned that Michael might have ASD. She had found a list of traits characteristic of a person on the spectrum and asked her sister if it reminded her of anyone. Michael’s ex-wife immediately identified him. Although not an official diagnosis by any means, the incident started the dialogue.
“I thought there was credibility to it,” he says. “My wife and I were struggling with our marriage and I was open to trying anything to save it. I would have done whatever it took.”
And he definitely tried. He found a local psychologist and completed a test battery, which confirmed everyone’s suspicion—even his own. Although he thought he was prepared, hearing the diagnosis was still a shock, and it made him take a harder look at his past behavior patterns. He began reading about social cues and autism research and became hyperaware of how his behavior was different from what his neurotypical wife expected. It was too late, however—the marriage ended, and Michael was left to navigate this new image of himself on his own.
“I went through the stages of grief in a way, and I reflected back on incidents and I put two and two together and figured out why what I did—or didn’t do—wasn’t right,” he says.
“Now, of course, I know there are expectations in certain situations—I know what to do if someone is crying in bed, for example—but the problem is that I know what to do in those specific situations. It doesn’t mean I’ll know what to do if there is some variation,” he says.
“I think having a diagnosis when I was younger would have been better, as it would have given me a lot of powerful knowledge to work with, and allowed me to start on this path to improving myself—my behaviors, my actions—much earlier in life.”
And that’s where Michael says he is looking for help. He is looking for a place to meet others with the same diagnosis and with similar problems. He wants a group where he can bounce ideas off others and get some feedback. Although he’s attended a few local group meetings, he hasn’t found the right one. In the meantime, he is concentrating on making his new business work and trying to keep checks on his behavior—all of which can be a lot of work.
“I get really passionate about what I do and I know that when I’m looking for information I can come across really strong and I don’t mean to,” he says. “I need to be careful because I don’t want this to affect my business or any of my contracts.”
And the same goes for his personal life, too. On the rebound, he is in a relationship with someone who is “much more logic-minded.” Although the relationship is still new, this girlfriend seems to have a more suitable communication style for Michael. “She can quantify seven layers deep what she wants and then tells me. It’s unbelievable.”
In a leap of faith, Michael disclosed his diagnosis to his new girlfriend after they had an argument, worried that some familiar misunderstandings were beginning to resurface. He said it was scary to tell her, but she took it well and understood his concerns.
“I don’t usually disclose having Asperger’s to people, because you never know what their perception of it is,” he says. “Luckily, I think I’ve found someone who doesn’t care.”
Finally … a Diagnosis
Sam Bushnick always struggled. Growing up in a military family, he spent his school years in various states (California, Hawaii and Arizona), flailing in academics and labeled with learning disabilities. It wasn’t until his late 40s—when he was diagnosed with high-functioning ASD—that he understood the origin of his difficulties. During his transition from childhood to adolescence, he faced teasing and bullying at each of his new schools, which resulted in isolation and frustration.
Today at age 55, Bushnick and his father live in a Pittsburgh townhome next door to his sister, SLP Janice Nathan. Nathan, who has worked with clients on the autism spectrum for the past 14 years, says she had always wondered if there was something deeper than learning disabilities when it came to her brother, especially because their mother also had what Nathan suspects was ASD. “Let’s just say I grew up in a very unusual family,” she says.
Several years ago, when she suggested to her brother that he get screened at a nearby clinic, they both remember that his first reaction was that she was wrong. She recalls talking to Bushnick about adults on the spectrum being very bright, and how many of the kids she worked with had learning difficulties similar to those Bushnick had in school.
“I mentioned on multiple occasions that I had a ‘feeling’ that if he had been a child in today’s world, he might have been given an autism label,” she says. The Center for Excellence in Autism Research at the University of Pittsburgh was conducting a study on adults with autism—and there was an opportunity to finally uncover the truth. After much convincing, Bushnick agreed to be screened. “He said he was interested in speaking with the researchers, but I don’t think he was expecting a diagnosis,” Nathan said. “It was quite a surprise for him to hear the diagnosis, but I think also for both of us it also was a huge relief. It gave me a lot of insight into my mom and myself.”
Bushnick confirms his reluctance to get tested. “She kept telling me that she thought I had autism and I told her I didn’t, but I finally told her I’d go get tested,” he says. “And now it turns out I do.”
Although the initial shock has worn off and he says he has learned to view himself under that new definition, he recalls feeling surprised at the news. Like many people, Bushnick says his knowledge of people with autism was limited to people who were nonverbal and relatively severe. This wasn’t how he saw himself at all, he says.
“I had learning disabilities, sure, but I always thought I was pretty much normal, you know? I always thought autistic people were like ‘Rain Man’ and that’s not how I am.”
Although unemployment for people with autism spectrum disorders is notoriously high, Bushnick is fortunate to have a full-time job at a local T-shirt printing factory. He has worked there for more than 10 years and, according to Nathan, has a good relationship with his foreman.
“They absolutely love Sam!” she says. “After he’d been there several weeks, his foreman walked up to him and told him that they would never let him go. I’ve worked in many different places and have never been told that by anyone!”
But still, the diagnosis has changed some of the ways Bushnick engages in his surroundings, he says. For example, now that he understands his diagnosis and how it can be perceived by other people, he says he tries to avoid interactions.
“Now that I realize I’m different, I try not to bother people,” he says. “I try to talk less at work and I try not to point out when people are doing something wrong—I get that people don’t like that.”
He has, however, also become more aware of other people’s actions and says he can “somewhat tell” if someone he meets is also on the spectrum. (“They usually need a lot of structure,” he points out). And this newfound awareness of himself and others may be OK. Through the efforts of Nathan, who has helped organize social groups and opportunities for local adults with similar diagnoses (look for her April 8 ASHAsphere post, where she discusses the benefits of social groups), Bushnick meets with a group sometimes regularly, sometimes not, depending on the activity.
Although he believes that these groups don’t always work because “if you get a bunch of people like this together we tend to reinforce our own negative behavior,” his sister has seen some breakthroughs for her brother. For example, when he sees people from the group, she reports that he will go up and say hello and chat with them independently for a little while—and “anyone with autism in their lives knows how huge that is.”
But the bottom line is that Bushnick says he is fine with who he is and is at peace with his diagnosis. Instead of seeing it as a challenge he needs to overcome, he sees it more as a matter of fact. He has a few friends with whom he is comfortable, has the occasional breakfast with his foreman from work, claims not to like “lowlifes,” and aside from the social group members, hangs out mostly with his father and sister.
He also doesn’t feel that his relationship with his family has altered very much since his diagnosis. They are still a family with all their ups and downs and really, he says, any awkward traits in the family can’t all be him—can they?
“You should check out my sister,” he says, chuckling. “She’s got something going on, too, I’m pretty sure.”
Cultural Immersion, Every Day
A successful businesswoman and an involved community member, Sara Gardner throws herself at her passions, often turning them into successful ventures. When she wanted to sell Pampered Chef products, she worked her way up to a regional manager position and oversaw five managers and 125 sales representatives. When she read Ross Greene’s book “The Explosive Child,” she not only implemented what she learned with her young son, but also developed a curriculum to teach the book to others—and was hired by the United Cerebral Palsy Foundation of Orange County to teach it as a class.
Not one to be content to be mildly interested in a subject, Gardner has a pattern of taking her interests to the next level. But despite this tendency toward success, she also has some struggles. She flaps her hands when she is excited, struggles with household planning and has a low tolerance for certain background sounds. For years she passed these off as possible anxiety or depression. It wasn’t until her son, M.J., was diagnosed with pervasive developmental disorder–not otherwise specified at age 11, and she began “obsessively” learning about autism spectrum disorders (“as I’m prone to do,” she notes, laughing) that she started to see a familiar story—her own.
“I felt like my life was unfolding in front of me,” Gardner says. “I asked my therapist, who I had been seeing for years for what I thought was depression, if he thought I might have Asperger’s. At first he said no, but when I went back the next week he had done some reading and suggested that I take a battery.”
Her diagnosis was confirmed at age 41 and the pieces of her life’s story began to fall into place. Looking back at her childhood photos, she says now she can see little things—how she always held her hands awkwardly, for example—and it is clear to her that she had always been on the spectrum.
Her reaction was mixed. “I was relieved at first—I finally had a name for what was going on with me—but then I became depressed,” she says. “I saw myself as disabled, which was hard. I’d always been so very capable, more capable than many, even. How could it be that I was disabled?”
She ultimately came out of her depression and embraced a new view of herself. Once again, falling into her pattern of following passions, she became involved in the autism community to help herself and her son, serving as the president of the Orange County Asperger’s Support Program and helping families looking for resources and networks in Southern California.
Now 52, Gardner lives in Redmond, Wash., and is the program manager for Autism Spectrum Navigators at Bellevue College. The college support program for students with ASD has grown from 18 students three years ago to 70. The goal of the program, she says, is not to “cure” the students, but to make the college experience more adaptable to their specific needs. She is proud of the program and is even more proud of her previously diagnosed son, who is 23 and graduating from college this spring with a bachelor’s degree in computer science in real-time interactive simulation. “He is so very hardworking and so very talented,” she says.
And although she says she is happy she went through the journey of being diagnosed and learning to embrace her new identity, she says she still has struggles. Much like one would learn to navigate a foreign culture, for example, Gardner has learned how to recognize when she is being “too direct” and to recognize social cues when she is making others uncomfortable. Also, to accommodate her low tolerance for office noises, she works from home during part of the week, going in to her office either later in the day or on the weekends. Still, she says, knowing what she is supposed to do and doing it are two different matters.
“Not everyone understands. Having a disorder like autism is really hard work,” she says. “Despite all the social skills training and knowledge, fitting in and acting neurotypical will never come naturally for me. It’s almost like a cultural immersion program.
“I think if I had been diagnosed earlier in life, there could have been good and bad repercussions. Instead of growing up feeling that I was capable of doing anything I chose to do, I may very well have grown up feeling ‘broken’ like so many of the young people I work with seem to feel. However, if I had been aware of my specific difficulties, I may have been better able to navigate college and career, and perhaps a steadier path in those areas would have brought me greater financial success. Who knows? I feel as if it’s a toss-up.”
The long and confusing road
At age 49, Xenia Grant says she has a fulfilling life. She works part-time at the Goodwill warehouse in Denver fulfilling book orders, goes to church regularly, visits with friends, keeps up with her 30 nieces and nephews on Facebook, and has her own apartment that she shares with her cat, Quiero.
“He’s my buddy,” she says, laughing. “He’s always on me somehow.”
But Grant’s state of contentedness has come after a long and sometimes confusing road for this Missouri native. Grant was officially diagnosed with high-functioning autism with anxiety and depression at age 36 (“A few months before 9/11 and I’ll never forget it,” she says). Although the push for a diagnosis at the time was to qualify for Social Security Disability Income, the result was greater: The label pulled a lot of facets of her life together and, in a way, gave her some closure.
“I have known I am autistic since 1986 when I was a junior in college,” Grant says. “It took many years to accept this fact, partially because at the time there were not as many of us who were college-educated and on the autism spectrum. It was my depression that had brought me to that point where I just couldn’t work full-time, but then to hear the diagnosis of autism again … well, yeah … it was surprising and not surprising.”
Grant had always known she was “different.” Born in St. Louis, Missouri, she was the seventh of eight children and grew up in a house where the action never seemed to stop. From the age of 8, she remembers becoming fixated on certain topics: collecting rocks, South America, communism and the Soviet Union, and an intense crush on singer Donny Osmond. And even though those interests could have been typical of children her age, she knew even then that she was pursuing them differently from her peers.
“I talked about it all constantly and my family used to get so angry with me because I was always repeating myself,” she recalls. “They were just sick of it and kind of sick of me.”
And that was the biggest problem—having to navigate her relationships with her parents and siblings. Although she feels like her parents did the “best they could in the time period we were in,” Grant says that she never felt like her parents fully “got her,” and that they viewed her differences as deficits.
“My dad had a lot of anxiety and anger, but kids need to be accepted by family—I wish I had felt like that,” she says.
“It’s better today than it was 25 years ago, but we still live in a society where differences aren’t always OK.”
Whatever her struggles were socially, she was academically poised enough to go to college and study political science at what was then Maryville College in Missouri (now Maryville University). She was feeling that her troubles were over, thinking, “Whatever I had when I was a kid must be gone because I was in college, right?” But then in 1986, during her junior year, a professional that her mother had introduced her to told her that she had autism.
“I can’t remember who the person was and it wasn’t an official diagnosis, but that was the first time I had heard that term applied to me,” she says. “My mom seemed to think it was right, but I really didn’t know much about autism. I read Temple Grandin’s book, “Emergence: Labeled Autistic,” and it was the first book that understood me and my fixations.”
The idea of having autism interested her and a year later she secured a summer internship at the Autism Society of America. She lived in the Georgetown area of Washington, D.C.—she can recite the exact way she got to and from work—and loved learning about how the politics of Washington, D.C., worked, but she still wasn’t officially diagnosed. It wasn’t until her mid-30s, when her depression hindered her ability to work full-time, that she was tested and received her official diagnosis. Even though she thought she would have (should have?) been prepared, it was still difficult to accept.
“It’s hard to believe you have something wrong with you,” Grant said. “In time I accepted it, sure, but I didn’t really have true self-confidence that I was OK until my 30s or 40s.”
Today she has fully accepted herself and is not only enjoying her life, but has also become closer to her siblings. She has become a vocal resource within the local autism community, serving as the Denver facilitator for the Global and Regional Asperger’s Syndrome Partnership. Her mission, she says, is to make new members feel welcome and know there are others like them. In fact, she wants to make sure that society is much more accepting of people with differences and to see more understanding employers and communities. Because, she says, people with ASD are too often overlooked.
“We are feeling people, we want to work, and we have a lot to contribute to society,” Grant says. “American society is too invested in popularity. Especially in today’s economy, if you’re not an alpha dog, they don’t want you. I’m lucky I have a job, but I know a lot of ASD people who don’t. Differences are OK—not everyone can be a hand, not everyone can be an eye, but we all have to work together.”
1 Comment
April 18, 2014
Janet Coe Hammond
Autonomus Autists
Clinicians mean well, but all of the resources in this article are clinician controlled. Hopefully, the goal for all of our clients is self-determination. I would like to add supports that are created for Autists by Autists. They are also places where family, friends, and professionals can go to ask questions; learn more from the true experts. The Autistic Self Advocacy Network (ASAN) http://autisticadvocacy.org/ Autism Friends Network ( AFN ) http://www.autismfriendsnetwork.biz/portal.php Wrong Planet http://www.wrongplanet.net/ Just about any sizable city has an autistic adult support group, run by Autists for Autists.
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April 2014
Volume 19, Issue 4