Read an Excerpt
Chapter 1
WHAT IS ASPERGER SYNDROME?
Asperger syndrome is an autism spectrum disorder characterized by the symptoms, behaviors, and deficits that constitute one of several sets of diagnostic criteria. But it’s almost impossible to extrapolate from that information what it means to have AS. For that reason, this chapter focuses on what Asperger syndrome is (or, depending on which version of the DSM you’re using, isn’t) from a clinical diagnostic viewpoint and how it often manifests in terms of symptoms and behaviors.
Asperger syndrome was named for Dr. Hans Asperger, a Viennese pediatrician whose paper describing four boys he treated in a hospital during World War II, “‘Autistic Psychopathy’ in Childhood,” was published in 1944 in German.1 By then, Asperger had been working with children whom he described using the word autistic since the early 1930s and, in the opinion of one colleague, had treated perhaps hundreds.2
Asperger’s paper did not become widely known until the British psychologist Dr. Uta Frith translated it into English in 1991, but it would be a mistake to say that Asperger’s work was completely unknown. In fact, Dr. Bernard Rimland referred to “Asperger’s syndrome” in his Infantile Autism, the 1964 book that challenged the then--prevailing notion that autism was caused by poor parenting, a failure in bonding, and so--called refrigerator mothers.
Where It All Started
In 1932, Dr. Asperger began running a department of Vienna University’s children’s clinic. At the time, Asperger’s patients lived at the clinic, or hospital. There treatment consisted of education and a range of therapies, including speech, play, and music. As Dr. Frith points out in the classic Autism and Asperger Syndrome (which contains her translation of Asperger’s 1944 paper), Asperger’s approach was not “special education” as we understand the term today. We need to step back in time, to when many professionals working with children whom we would today recognize as having ASD sought in Freudian psychotherapy both the causes for and the solutions to their patients’ problems. Asperger took a different approach: what Frith terms “a synthesis of medical and educational practice, applied by inspired doctors, nurses, teachers, and therapists in a team effort.”3 The German term that Dr. Asperger used to describe his work--Heilpadagogik--captured the integration of several types of interventions encompassing education, the arts, and daily living skills. The children lived in a specially designed and decorated ward where the daily routine included physical education, music, drama, singing, and speech therapy, in addition to school. A bombing in 1944 destroyed the ward and killed the woman whom Asperger credited with running the program, Sister Viktorine Zak.
Postwar anti-German sentiment in many Western countries might explain why Asperger’s ideas and his work remained so little known in the United States. Another possibility is that, even if his work had been translated and made accessible to English-speaking professionals, the prevalence of Freudian thinking about psychological and psychiatric issues might have made it difficult for Asperger’s ideas to take hold. Asperger’s work coincided with the Nazi occupation of Austria, and though the occupiers targeted his clinic because he housed and treated “abnormal” children--a population Hitler targeted for extermination, due to their “inferiority”--some might have presumed Asperger a Nazi sympathizer. In fact, he was not, and on several occasions, he took great risks to protect his charges.4
Reading Dr. Asperger’s work makes it clear that he cared about these children. He recognized their strengths and talents as well as their struggles. It was Asperger who coined the term “little professor” to describe children with precocious knowledge and willingness to share it. It was also Asperger who first pointed out their vulnerability to being bullied and their need for special, explicit instruction in social and adaptive skills. Asperger’s observation that parents and other family members might share traits has been supported by recent discoveries in genetics. His tone is compassionate, and his quest to understand these children and to help them is evident. Though many disorders bear their discoverer’s name, knowing something about Asperger the man and how he understood these children sets a fine starting point for anyone who cares about these children today.
ASPERGER SYNDROME “ON THE SPECTRUM”
People have been referring to an autism “spectrum” for about twenty years now, and in 2013 DSM‑5 made it “official” by herding all autism diagnoses under autism spectrum disorder, or ASD. When Asperger syndrome first appeared in DSM‑IV in 1994, the diagnostic criteria were neatly captured by what British psychiatrist Dr. Lorna Wing terms a “triad of impairments affecting: social interaction, communication, and imagination, accompanied by a narrow, rigid, repetitive pattern of activities.”5 Among the characteristics that are thought to distinguish Asperger syndrome from other forms of ASD are the presence of normal to above-average intelligence (although even by DSM‑IV criteria, mild mental retardation could occur); apparently normal language development; and one or more special interests that may dominate attention, conversation, and social interactions.
Originally, the word spectrum nicely captured the sense that the presence or absence or degree of impairment resulting from specific symptoms could range from nonexistent to mild to severe, and that in each individual, every symptom or behavior could conceivably fall on a different point. So, for example, one could be brilliant at calculus yet unable to organize the backpack for school, or have prodigious skills in spelling and grammar and yet be unable to write a simple three-paragraph essay about summer vacation.
You may hear of AS described as a “high-functioning” form of autism. While that is an easily understood description, we agree with Dr. Ivar Lovaas and find the terms high functioning and low functioning discriminatory. This is not simply a matter of semantics or a desire to be politically correct. The fact is, individuals with ASDs each have within themselves a spectrum of abilities and challenges. We have seen young children with serious deficits in language and speech who are more independent in self-care than some older adolescents with AS who have IQs over 130. The term high functioning is often applied to AS because people with this diagnosis typically have a normal or above-normal IQ and many, though not all, exhibit exceptional skill or talent in a particular area, often their area of special interest. (This should not be confused with the autistic savant phenomenon, depicted in the film Rain Man, where a person with autism demonstrates incredible feats of calculation or memory, or a creative talent.6)
Another distinguishing feature of Asperger syndrome is the absence of a “clinically significant delay in language.” In other words, young children with AS typically have early (before age three) language development that ranges from normal to precocious, but not always. This is typically not the case with children on other points of the autism spectrum. While early language development might appear to be normal in children with AS, there is growing evidence that the deeper language deficits are always present. This becomes most apparent when the curriculum shifts focus in upper elementary grades from a concrete to a more abstract, conceptual understanding of material. Further, some people who had severe language delays as children do receive the AS diagnosis later on, as did, for example, Dr. Temple Grandin.
THE CURIOUS INCIDENT OF THE DIAGNOSIS THAT “DISAPPEARED” (FOR NOW)
Although there are now--and will continue to be--people whose presentation suggests a diagnosis of Asperger disorder, “officially,” as of spring 2013 in the United States, there is no longer an official diagnosis called Asperger syndrome or Asperger disorder. The decision of the American Psychiatric Association (APA) to “merge” Asperger’s disorder (the official name of the diagnosis), childhood disintegrative disorder, autistic disorder, and pervasive developmental disorder--not otherwise specified (PDD-NOS) all together under “ASD” has not been without its critics (among them Dr. Fred Volkmar of the Yale Child Study Center, primary author of the DSM‑IV’s autism and pervasive developmental disorders section7). One of the problems with the earlier criteria, according to the APA’s 2013 statement, was that “these separate diagnoses were not consistently applied across different clinics and treatment centers,”8 and anyone working in the field can attest to that. As I spoke to medical professionals in the field in many contexts over the years, several issues of diagnosis became clear. One was that PDD-NOS did indeed become the “catchall” diagnosis. It included children who met criteria for autistic disorder (a diagnosis that might have made some professionals and parents alike uncomfortable). A second was that any individual on the spectrum who had verbal skills or a normal IQ was “promoted” to Asperger disorder, regardless of the presence of speech delay before three, lower-than-average IQ, and the absence of the telltale special interest.
Research discovered that in many ways, individuals with Asperger disorder and those some describe as having atypical or high-functioning autism really were not that different in important ways, though they were in some.9 Further--and this is something we should all keep in mind--there has yet to emerge a scientifically based, proven intervention for any form of pervasive developmental disorder under DSM‑IV that could not be modified to work for someone with Asperger syndrome and, conversely, no treatment that is “only good for” one particular ASD profile.
The important take-home message: Each individual with ASD is truly an individual, in every way. Not every individual comes with behaviors and symptoms that make a “perfect” match with any diagnostic criteria. Those who receive any type of ASD diagnosis have enough in common in terms of presentation of symptoms or behaviors outside the norm in the three key areas (social, language, repetitive behaviors or interests) that, yes, ASD is “real.” And despite the word’s being eliminated from the DSM‑5’s diagnoses, these differences, deficits, challenges--whatever you decide to call them--are pervasive in that they touch most aspects of daily living. And they are developmental, meaning that they were not “acquired,” but were present in some form at birth, whether anyone detected their presence or not.
Medical professionals are advised by the American Psychiatric Association not to use the old DSM‑IV diagnoses any longer.10 However, it seems to be both understood and accepted that those who received the earlier diagnoses will “keep” them. Because while “autistic disorder” might have been too “scary,” and “PDD-NOS” might have been too “vague” and “catchall,” when applied correctly, “Asperger disorder” did signal to those familiar with the criteria some important differences and characteristics.
My son has “had” Asperger syndrome since he was five years old and, realistically, since the day he was born and probably before. Not only is “replacing” AS with the DSM‑5 criteria awkward--because he would now be diagnosed with “Autism Spectrum Disorder without accompanying intellectual impairment but requiring level 1 support, without accompanying language impairment but requiring, associated with other disorders--specifically learning disabilities, dyslexia, etc.--and without catatonia”--but for most listeners, this information would be useless.
Further, in the past twenty years, despite the diagnostic confusion DSM‑5 was designed to address, countless people found something useful, valuable, even sacred in having a name for the differences and the way they understood and interacted with the world. Individuals enthusiastically embraced a diagnosis that may have “corrected” previous diagnoses or negative attributes or attitudes used to describe their behaviors and thoughts. Some even assumed the “Aspie” label with pride and a sense of community that is reflected in both online and real-world support groups and advocacy organizations. Does anyone truly expect that an organization such as GRASP (Global and Regional Asperger Syndrome Partnership, which was founded and largely run by people with ASD) will change its name or change its focus simply because Asperger syndrome or disorder no longer “exists”? I hope not.
WHO HAS ASPERGER SYNDROME?
We have yet to have an actual “head count” on the prevalence of AS. Currently, the Centers for Disease Control and Prevention (CDC) state that 1 in 68 children have ASD. Autism spectrum disorder is more common than childhood cancer, Down syndrome, muscular dystrophy, or cerebral palsy.11 Authorities who focus on AS estimate that perhaps 1 in 250 present with that profile. AS is still much more common among boys than girls. Four out of every five people diagnosed with ASD are male, though new studies suggest that nine times as many boys than girls are diagnosed with AS.12 The picture gets a little muddier when other research finds that many girls and women go misdiagnosed or undiagnosed altogether.1
Since 1997, when the prevalence of all ASDs was estimated at 1 in 1,000, the rates have clearly risen.13 Are the statistics rising because of an actual increase in autism in general, or is it because more children are being identified? There is evidence to support either position. One can safely assume it’s a combination of the two.
1. Uta Frith, “Asperger and His Syndrome,” in Uta Frith, ed., Autism and Asperger Syndrome (Cambridge, UK: Cambridge University Press, 1991), pp. 1–36. Also: Hans Asperger, “‘Autistic Psychopathy’ in Childhood,” Uta Frith, trans. and annot., in Autism and Asperger Syndrome, pp. 37–92.
2. Adam Feinstein, A History of Autism: Conversations with the Pioneers (Chichester, UK: Wiley-Blackwell, 2010), especially chapter 1, “Two Great Pioneers,” pp. 9–36.
3. Frith, “Asperger and His Syndrome,” p. 7. Descriptions of Dr. Asperger’s treatments and biography from various sources, including: Feinstein, “Two Great Pioneers”; Tony Attwood, The Complete Guide to Asperger Syndrome (London and Philadelphia: Jessica Kingsley Publishers, 2007), especially chapter 1, “What Is Asperger Syndrome?,” pp. 11–34; Maria Asperger Felder, “Foreword,” in Ami Klin, Fred R. Volkmar, and Sara S. Sparrow, eds., Asperger Syndrome (New York: Guilford Press, 2000), pp. xi–xiii.
4. Attwood, The Complete Guide to Asperger Syndrome, “Preface,” pp. 9–10. Also: Frith, p. 10; Feinstein, pp. 14–18.
5. Lorna Wing, “The History of Asperger Syndrome,” in Eric Shopler, Gary B. Mesibov, Linda J. Kunce, eds., Asperger Syndrome or High-Functioning Autism? Current Issues in Autism series (New York: Plenum, 1998), pp. 11–27.
6. For more information on savantism and savantism in autism, visit Dr. Darold A. Treffert’s website: www.wisconsin/medicalsociety.org/savant/default.cfm.
7. James C. McPartland, Brian Reichow, and Fred R. Volkmar, “Sensitivity and Specificity of Proposed DSM‑5 Diagnostic Criteria for Autism Spectrum Disorder,” Journal of the American Academy of Child and Adolescent Psychiatry 51, no. 4 (2012): 368–383.
8. American Psychiatric Association (APA), “DSM‑5 Autism Spectrum Disorder Fact Sheet,” 2013.
9. McPartland, Reichow, and Volkmar (2012). See also: Claudia Wallas, “A Powerful Identity, A Vanishing Diagnosis,” New York Times, November 3, 2009; Benedict Carey, “A Tense Compromise on Defining Disorders,” New York Times, December 10, 2012; Benedict Carey, “New Definition of Autism Will Exclude Many, Study Suggests,” New York Times, January 19, 2012; Amy S. F. Lutz, “You Do Not Have Asperger’s: What Psychiatry’s New Diagnostic Manual Means for People on the Autism Spectrum,” Slate, May 22, 2013, at slate.com.
10. American Psychiatric Association, “Frequently Asked Questions About DSM‑5 Implementation--For Clinicians UPDATED 9/20/13” at http://www.dsm5.org/Documents/FAQ%20for%20Clinicians%209-20-13.pdf; accessed February 3, 2014.
11. National Institute of Mental Health, “Autism Spectrum Disorder,” at http://www.nimh.nih.gov/statistics/1AUT_CHILD.shtml; accessed December 15, 2013.
12. Emily Singer, “Late Arrival,” SFARI: Simons Foundation Autism Research Initiative, November 2, 2012, at http://sfari.org/news-and-opinion/blog/2012/late--arrival; accessed March 2013.
13. An early analysis of prevalence studies conducted between 1966 and 1984 found autism at a rate of 0.4 cases per 1,000. Between 1986 and 1997, that figure more than doubled to 1 per 1,000. In 2003, a CDC study of 987 children in Atlanta, Georgia, demonstrated that 4 per 1,000, or 1 in 250, was most likely to reflect then-current prevalence rates. In early 2004, the rate was believed to be between 1 in 166 and 1 in 250 children. In 2012, the widely accepted prevalence rate was 1 in 88. In March 2014, the prevalence rate was revised to 1 in 68. Sources: Eric Frombonne, “The Prevalence of Autism,” Journal of the American Medical Association, 289, no. 1 (January 1, 2003): 87–89. See also: “Autism Prevalence on the Rise,” a PDF chart from Autism Speaks, available at http://www.autismspeaks.org/docs/Prevalence_Graph_12_18_2009.pdf. Centers for Disease Control and Prevention, “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years--Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” Morbidity and Mortality Weekly Report, March 28, 2014.
1 One possible reason why the 4:1 ratio of boys to girls for ASDs generally does not carry over to the 9:1 for Asperger syndrome is that even though girls make up a smaller percentage of all ASD diagnoses, girls with ASD are more likely to also suffer cognitive, or intellectual, disability than boys are.
