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Are Doctors Missing Asperger’s?

college student photoMost clinicians don’t think of autism when they diagnose “normal” looking people. They think of Sheldon in The Big Bang Theory or of the stereotype of the nerdy boy memorizing dates of WWII battles. Many high functioning people on the autistic spectrum (Asperger’s) and NLD (which is a neuropsychological profile with many Asperger’s traits) don’t look like Sheldon or the stereotype and are still neurodiverse. This is especially true of girls, whose interests can seem gender appropriate and who seem to function well socially, at least to outsiders, because they are seen together with other girls. This does not mean they sustain fulfilling relationships with school peers. All genders with Asperger’s are often bright and may be accomplished, but struggle with depression and anxiety because they don’t fit in, think differently and feel misunderstood. They may feel overwhelmed by things that don’t bother others. Researchers have referred to a “lost generation” of adults who are not understood or diagnosed, who struggle with making sense of themselves and their lives.

Mary is 22. She is a college student, majoring in English. She’s depressed and anxious.  She doesn’t fit in. Dorm life too noisy and lacking in privacy. She’s having blowups with her roommate who is loud and whom she experiences as intrusive. She’s feeling stressed academically. She’s always been anxious and has a few valued friends from her creative writing group, who predominantly stay in touch online. She’s been a writer since elementary school and is seen as talented. Her self-esteem is low because she feels rejected, inadequate and overwhelmed. Her therapist may think of anxiety, depression, and even borderline personality disorder (the blowups) but not of Asperger’s, which is clinically termed high functioning autism spectrum disorder level 1.

Symptoms of autism spectrum disorder (ASD) level 1  can be subtle and often unrecognized.  If her therapist had asked, Mary would probably have sensory issues and be a literal, detail-oriented thinker with enormous integrity. She has no interest in small talk or gossip; she experiences college life as constant social pressure. In fact, she often found that she accidentally offended others and was perceived as aloof or uninterested. She wanted friends and felt rejected when others weren’t interested. She would struggle with the lack of structure in college life. Her detailed way of thinking served her well in creative writing but she was struggling with work assigned in her English classes that called for inferences about literary characters.

The lack of severity of autistic symptoms does not necessarily correlate with the severity of stress experienced by those with Asperger’s, since many have been struggling with unrecognized social and emotional problems their entire lives. Often bright people with Asperger’s learn to “pass,” to have a social mask that gets by but that is maintained with enormous effort. They still struggle with close personal, school or work social relationships. They have high levels of social anxiety, although many want friends. With their intelligence and skills they may have strong academic backgrounds and even high level jobs, but they  miss social cues and struggle to understand certain ways of thinking, to handle the social and sensory environment others consider normal.

Autism Spectrum Disorder (ASD) is estimated to occur in 1% of adults and estimates are that 50% of those with ASD would be called high functioning.  The label “high functioning” is misleading, since it confuses intellectual level and life/social functioning. Many high functioning ASD individuals have significant executive function and social challenges resulting in more stress and struggle than would be expected.        

There are  contrasting views of the diagnosis of high functioning ASD level 1 itself.  The biomedical model of ICD-10 identifies ASD as a disability, a biologically based neurodevelopmental disorder.  The psychosocial model that holds that the ASD is not a disorder but a differing cognitive style and developmental pathway.  Impairments exist – social, cognitive, executive functioning, and sensory – but the social model also recognizes the areas in which Asperger’s and NLD  individuals excel – creative insights, attention to detail, depth of knowledge, caring, honesty and integrity. They value friendships, usually with those who share their interests. These very strengths are often misunderstood to rule out an Asperger’s diagnosis.

Many adults with Asperger’s describe feeling relief at the diagnosis, since it helps them make sense of many of the struggles they’d experienced. After years of being told they “shouldn’t” be bothered by what bothered them, to stop being stubborn, that they were manipulative if something bothered them and they resisted doing it, of feeling “weird” and not fitting in without knowing why, they have an understanding of themselves and actually a community of people like themselves. Their anxiety and challenges make sense. It gives them an understanding of what help or support they need, and encouragement to value their strengths and accept their differences without so many negative judgments.

It’s critically important that professionals in mental health and health care generally be aware that Asperger’s (or Asperger’s traits) are a frequently missed diagnosis. Seven percent to 16% of patients in psychiatric facilities are finally diagnosed with ASD.  Many of those  with Asperger’s have co-occurring issues such as major depressive disorder, ADHD, anxiety disorders or bipolar disorder and the ASD diagnosis was missed.  Many are diagnosed as borderline (for being resistant, having emotional meltdowns), OCD or ODD (cognitive rigidity, repetitive behaviors or refusals/not following rule.)

The Asperger’s diagnosis can help those with Asperger’s (and those with Asperger’s traits associated with NLD) realize that being neurodiverse is a difference, not a failing.  They can understand what support they need and help those around them better understand their behavior and needs and to accept neurodiversity. They can better realize differences of those who are “neurotypical.” They can improve relationships. They can seek out environments that are the best fit for their strengths, and the least taxing on areas of difficulty. It helps them make sense of their lives. 

 

Photo by CollegeDegrees360

Photo by CollegeDegrees360

Photo by CollegeDegrees360

Are Doctors Missing Asperger’s?


Marcia Eckerd, Ph.D.

Psychologist since 1985, serving on CT ASD Advisory Council, Professional Board SmartkidswithLD


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APA Reference
Eckerd, M. (2019). Are Doctors Missing Asperger’s?. Psych Central. Retrieved on November 17, 2019, from https://blogs.psychcentral.com/aspergers-nld/2019/02/are-doctors-missing-aspergers/

 

Last updated: 4 Feb 2019
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