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Asperger’s Syndrome:An Enigma for Social Work

Ernst O. VanBergeijkOren Shtayermman

ABSTRACT. Asperger’s Syndrome (AS), a Pervasive DevelopmentalDisorder on the Autism Spectrum, is a burgeoning mental health con-cern faced by children, their families, schools, and mental health practi-tioners. Although it is a relatively new phenomenon, prevalence rateshave increased 10 fold in the past decade. Whether this increase is a trueincrease in the prevalence of the syndrome has been the subject of greatdebate. The assessment and treatment of AS is a complicated process re-quiring social workers to partner with families and other helping profes-sionals. Given the growing size of the AS population, it is critical thatsocial workers understand the disorder, its co-morbidity, and treatment.The authors review the prevalence and history of the syndrome, currentdefinitions, and discuss implications for social work practice, policy,and research. [Article copies available for a fee from The Haworth Document De-livery Service: 1-800-HAWORTH. E-mail address: <[email protected]> Website: <http://www.HaworthPress.com> © 2005 by The Haworth Press,Inc. All rights reserved.]

KEYWORDS. Asperger’s syndrome, autism, assessment, diagnosis,autism social work

Ernst O. VanBergeijk, PhD, MSW (E-mail: [email protected]) and OrenShtayermman, CSW (E-mail: Shtayermman@ fordham.edu) are affiliated with theFordham University, Graduate School of Social Service, 113 West 60th Street, NewYork, NY 10023..

The authors would like to thank Dr. Marianne Yoshioka from Columbia UniversitySchool of Social Work for her comments on earlier drafts of this article.

Journal of Human Behavior in the Social Environment, Vol. 12(1) 2005Available online at http://www.haworthpress.com/web/JHBSE

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INTRODUCTION

Asperger’s Syndrome (AS) is an autism spectrum disorder that ischaracterized by highly impaired social skills, difficulty relating to oth-ers, a lack of flexible imaginative play, and often a preoccupation with afinite and highly specific topic. AS, which typically presents less severesymptoms than classic autism, has seen a dramatic increase in its preva-lence within the last 10 years. Current estimates of the prevalence ofAsperger’s Syndrome range between 0.3 to 67 per 10,000 children(Bertrand, Mars, Boyle, Bove, Yeargin-Allsop, & Decoufle, 2001; Fom-bonne, 2001). The numbers of children affected by this syndrome are al-most double the number of children who exhibit classic autism. Recentestimates of the autism prevalence rate are in the range of 3.4-26 per10,000 children (Yeargin-Allsopp, Rice, Karapurkar, & Doemberg,2003; Kadesjo, Gillberg, & Hagberg, 1999). Both the popular press andscholarly researchers have documented an “explosion” in the incidenceof cases of autism and autism spectrum disorders within the past decade,labeling it as an “epidemic” (Cowley, Underwood, Murr, Springen, &Sennott, 2003; Ehlers & Gillberg, 1993; Bryson & Smith, 1998;Fombonne, 2001; Fording, 2003; Nash, 2002; Ozonoff, Rogers, & Pen-nington, 1991). Before the 1990s, the prevalence of autism was thoughtto be 1 in 10,000 (Klin, Volkmar, & Sparrow, 2000; Brasic, 2001) mak-ing this spectrum of disorders relatively rare.

Children with AS are considered to be relatively high functioning inmany areas of their lives which creates confusion for parents, teachers,and helping professionals in understanding the many socially difficultbehaviors that a child with AS may exhibit. Because children with ASare commonly the target of negative peer interactions and have speciallearning needs, it is essential that an accurate diagnosis is made early inthe child’s life. Social workers working with children and families,schools, or health settings may play an important role in early screeningfor AS, helping parents through the diagnostic process and developingand/or linking children with AS to services.

What Is Asperger’s Syndrome and How Does It Differfrom Other Autism Spectrum Disorders?

Part of the complexity in answering these questions lies in the historyof the disorder, the definitions of autism spectrum disorders, other disci-plines’ labels for the syndrome, and the strengths of these exceptional

24 JOURNAL OF HUMAN BEHAVIOR IN THE SOCIAL ENVIRONMENT



children. The social work profession’s lack of familiarity with the syn-drome further obfuscates the answers.

In the 1940s Leo Kanner (1943) a Baltimore child psychiatrist andHans Asperger (1944) a Viennese pediatrician, in two separate publica-tions, describe the behavioral profiles of two similar, yet potentially dis-tinct disorders. In these independent samples, both groups of childrenshowed a non-purposeful disregard for social rules, a difficulty in under-standing other’s emotional experience, stereotypy (e.g., hand flapping),and for those children who did possess verbal skills, an excellent memoryin a finite topic. Kanner (1943) referred to the condition afflicting thechildren as “Autistic disturbances of affective contact.” Asperger, un-aware of Kanner’s publication, labeled the children’s disorder as “Autis-tic Psychopathy.” It was not until 1991 when Lorna Wing documented 10similarities between Asperger’s description and Kanner’s earlier writingon autism. Today, the disorder that Kanner described is known as “classicautism.” Asperger’s “autistic psychopathy” is simply referred to as Asp-erger’s Syndrome (AS).

Although the features of the clinical syndromes in both groups ofchildren were similar, there were some distinct differences between thetwo groups of children. Namely, the children Asperger wrote aboutwere higher functioning than those Kanner observed. Asperger ob-served fine and gross motor problems with his population. Also, the ageof onset was not before three years of age. The children in Asperger’ssample had acquired language normally. In contrast, the children work-ing with Kanner either did not develop verbal language or there was asignificant speech delay. No motor problems were noted in Kanner’swritings. Asperger believed these children “possessed normal intelli-gence and were capable of gainful employment” (Miller & Ozonoff,2000, p. 227). Later research on children fitting Kanner’s diagnostic cri-teria revealed impaired cognitive abilities and a marked inability to at-tain gainful employment (Miller & Ozonoff, 2000). Furthermore,Kanner’s autism is associated with mental retardation in about 65-90%of the cases (Wing, 1993; as cited in Gilberg, Nordin, & Ehlers, 1996).

The fact that both Kanner’s and Asperger’s diagnostic features oftheir syndromes overlap and they used similar nomenclature obfuscatesthe differences between the two syndromes. What further clouds thedistinction between the two disorders is that in 1990 Asperger’s Syn-drome was added to the International Classification of Diseases (ICD-10) as a pervasive developmental disorder. According to Wing (1991)alternative labels for the syndrome included “Schizoid Disorder ofChildhood” and “Autistic Psychopathy” (p.105) in this publication. The

Ernst O. VanBergeijk and Oren Shtayermman 25



American Psychiatric Association finally added Asperger’s Syndrometo the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition(DSM-IV) using the umbrella rubric of pervasive developmental disorders(Barnhill, Tapscott Cook, Tebbenkamp, & Smith Myles, 2002), which isalternatively known as “Autism Spectrum Disorders” (Wing, 1991).

Autism spectrum disorders are conceptualized as a continuum ofsyndromes ranging from Autistic Disorder to Pervasive DevelopmentalDisorder Not Otherwise Specified (PDD-NOS). The continuum in-cludes Rett’s Disorder, Childhood Disintegrative Disorder, AtypicalAutism, and Asperger’s Disorder (DSM-IV-TR, 2000). Among the au-tism community High Functioning Autism (HFA) is used to distinguishbetween individuals with classic autism symptoms (i.e., those with littleor no speech) and those with speech that had a late onset.

The current diagnostic features of AS include a qualitative impair-ment in social relationships. The diagnosis of AS typically occurs muchlater than autism. Children with autism are diagnosed in early childhoodbecause of their profound inability to interact with others. The diagnosisof autism can be made as early as 18 months and can be made reliablyby 30 months of age (Gillberg, Nordin, & Ehlers, 1996). Children withAS are diagnosed on average between 6-10 years old, only after havingyears of difficulties learning and relating to peers (Gillberg, Nordin, &Ehlers, 1996). AS children are socially isolated and this isolation cannotbe explained by other personality features such as shyness or aggres-siveness (Barnhill, Taspscott Cook, Tebbenkamp, & Smith Myles,2002; McLaughlin-Cheng, 1998; Klin, Volkmar, & Sparrow, 2000).What limited social interaction they do engage in revolves around theirown obsessive interests. Their impairment not only lies in a social skillsrealm, but also in speech. Although children with AS acquire speech,they have impairments in pragmatics and semantics of speech. Theyhave difficulty providing a listener with relevant contextual informa-tion. They do not know how to begin a conversation or maintain a topicin a reciprocal exchange between themselves and another child. Conse-quently AS children tend to dominate a conversation on a potentially es-oteric topic. This perseveration on obscure topics compounds theirisolation. AS children’s speech pattern can also be distinct. They possesa pedantic style of speech (Miller & Ozonoff, 2000; Frith, 1991). Thisformal way of speaking often earns the child a moniker of “the little pro-fessor” (Volkmar & Klin, 2000). Another distinguishing feature of theirspeech is prosody. Their voice inflection and tone can be “odd,” mono-tone, or robotic like.




Some individuals with AS have marked abnormalities of facial ex-pression and gestures and yet they are able to convey feeling and havesome degree of empathy for others (Tantam, 1991). Not only do indi-viduals with AS have difficulty expressing themselves, but they alsohave impairments in understanding verbal and non-verbal communica-tion (Miller & Ozonof, 2000; Barnhill, Tapscott Cook, Tebbenkamp, &Smith Myles, 2002; McLaughlin-Cheng, 1998). They understand spo-ken words quite literally, often do not recognize non-verbal language,and so may have difficulty comprehending jokes or sarcasm. This is notto say that individuals with AS do not have a sense of humor. However,much of the verbal humor that other individuals share will be relativelyinaccessible to an individual with AS.

Asperger’s Syndrome lies between Autistic Disorder and PDD-NOSon the continuum. It is considered highly controversial as to whether ornot Asperger’s Syndrome is a distinct clinical entity from High Func-tioning Autism (HFA) (Baron-Cohen, 2000; Miller & Ozonoff, 2000;Perrintgo, 1991; Szatmari, 1991; Szatmari, 1989; Marriage, Gordon, &Brand, 1995; Bishop 1989; Bruer, 1996; Ozonoff, Rogers, & Penning-ton, 1991; Prior, Eisenmajer, Leekam, Wing, Gould, Ong, & Dowe,1998; Elder, 2001; Louiselle, 2001; Fine, 1991; Fidler, 2000). Childrenwith high functioning autism unlike children with Asperger’s Syn-drome acquire language later than neurotypical children or AS childrendo, and have an impairment in symbolic play (McLaughlin-Cheng,1998; Philbin Bowman, 1988; Szatmari, Bremner, & Nagy 1989; Baron-Cohen, 2000). In addition, children with HFA do not appear to have ei-ther fine or gross motor impairments that are associated with AS bysome researchers (Rhea, 2003; Prior, Eisenmajer, Leekam, Wing,Gould, Ong, & Dowe, 1998; Klin, 2000).

In terms of intellectual functioning, both HFA and AS populationsrange from normal to superior on standardized I.Q. tests. It should benoted that a red flag of HFA and AS is a large discrepancy between ver-bal and performance I.Q. This discrepancy can be well over 13 I.Q.points on the WISC-R (Ehlers, Nyden, Gillberg, Dahlgren Sandberg,Dalhgren, Hjelmquist, & Oden, 1997; Klin, Volkmar, & Sparrow,2000; Klin, 2000). Interestingly, there is evidence to suggest that theprofiles of people with AS differ from those with HFA. Individuals withAS score significantly higher on the verbal section of the WISC-R thanthe performance section of the test. The scores for individuals with HFAare the opposite. Their strengths lie in the performance section of theWISC-R. Individuals with HFA score more poorly on the verbal sec-tions of the test (Prior, Eisenmajer, Leekam, Wing, Gould, Ong, &




Dowe, 1998). Within the last few years, this distinction has been con-tested across studies (Schriberg, McSweeney, Klin, Cohen, & Volk-mar, 2001; Jolliffe & Baron-Cohen, 1999; Klin, 2000).

You Say “P t�t�.” I Say “P t�t ?”

Adding to the complexity of AS is the fact that the behavioral andcognitive profile of AS has been given a range of different labels byother professions. Just like the pronunciation of words such as “potato”or “tomato,” is influenced by the environment in which one lives, theprofessional environment influences the pronunciation of the symp-toms we describe as Asperger’s Syndrome.

Occupational therapists often conceptualize AS “Sensory IntegrationDysfunction” given the focus of this profession on how a child moves inhis or her world, children who have sensory integration dysfunction arecharacterized as having gravitational insecurity, poor proprio- ceptivesense, and either under or over sensitivity to olfactory, tactile, auditory,and visual stimuli (Ayers, 1979; Kranowitz, 1998). They have difficultylearning and dealing with peers. Psychiatrists may use the term “Schiz-oid Personality Disorder” to refer to individuals who have AS. Underthe Schizoid Personality Disorder label, these persons have social isola-tion, bizarre pre-occupations, and odd speech. They are perceived asstrange, eccentric, cold, or aloof (DSM-IV-TR, 2000). Neuro- psychol-ogists use the term Non-Verbal Learning Disability (NLD). Personswith NLD have “significant deficits in social perceptions, social judg-ment, and social interaction skills, marked deficits in nonverbal prob-lem solving and outstanding relative deficiencies in mechanical arith-metic and compared to proficiencies in reading and spelling” (Rourke &Tsatsanis, 2000; pp. 235-236). Speech pathologists use the term Seman-tic Pragmatic Disorder (SPD). Individuals with SPD exhibit similar so-cial interaction deficits as an individual with Asperger’s Syndrome(Adams, Green, Gilchrist, & Cox, 2002).

The Co-Morbidity of AS

It is highly likely that a diagnosis of AS will be accompanied by asecond mental health diagnosis. Ghaziuddin, Weimer-Mikhail, andGhaziuddin (1998) found that among 35 AS patients, 65% had an addi-tional psychiatric diagnosis. The etiology of the co-morbid psychiatricdisorder can be either endogenous or environmental in nature.




The environmental stressors for individuals with AS likely exacer-bate their vulnerability to mood and anxiety disorders. Due to their so-cial isolation, and higher levels of frustration associated with socialinteractions, there is high co-morbidity with both unipolar and bi-polardepression (Barnhill, 2001; Kim, Szatmari, Bryson, Streiner, & Wilson,2000; Ghaziuddin, Weldmer-Mikhall, & Ghaziuddin, 1998; Kim,Szatmari, Bryson, Streiner, & Wilson, 2000; Rubenstein, 2001; Barn-hill, 2001; Rourke, Young, & Leenaars, 1989).

Age of the patient may influence the type of secondary diagnosis theyreceive. Ghaziuddin et al. (1998) found that adolescents and adults weremore likely to be diagnosed with depression than any other co-morbiddisorder. Twenty-five percent of the children in Ghaziuddin et al.’s(1998) report had a diagnosis of depression. Fifty-three percent of teensand adults in that sample were diagnosed as depressed. These numbersare considerably higher than those of Klin and Volkmar (1997) (as citedin Martin, Patzer, & Volkmar, 2000). They found only 15% of theirsample was diagnosed with depression. In a different study that wasdone by Tantam (2003) it was suggested that 22.2% of a sample of 234adolescents with AS also received a previous diagnosis of anxiety andanxiety related disorders. About 19.7% of the sample was diagnosedwith depression.

The unpredictability of the social environment can cause some indi-viduals with AS to develop anxiety disorders. Compulsive ritualsamong individuals with AS lead psychiatrists to think that this may be adisplay of obsessive-compulsive disorder (OCD) (Tantam, 2000) andthey may in fact have co-morbid OCD. Klin and Volkmar (1997) identi-fied 19% of their sample of 99 AS patients as having OCD (as cited inMartin, Patzer, & Volkmar, 2000). Social phobia is a sub category ofanxiety disorders where the individual displays a persistent fear of so-cial interactions or public performance. The resultant behavior can be apanic attack when thinking about or confronted with a social situation,with which they are unfamiliar. Tantam (2000) noted that adolescentswith social phobia may, in fact, have undiagnosed cases of AS, espe-cially when there is an absence of a complete developmental history.

Children with AS are more likely to be diagnosed with AttentionDeficit Hyperactivity Disorder (ADHD) as a secondary diagnosis oreven as an initial diagnosis than either teens or adults. This is not sur-prising given the fact that AS and ADHD share similar features andADHD is a diagnosis of early childhood. Klin and Volkmar’s (1997)study of 99 individuals with AS found that 28% of their sample exhib-ited ADHD (as cited in Martin, Patzer, & Volkmar, 2000). A survey of




the Online Asperger Syndrome Information and Support Website(OASIS) found that “. . . 65% [of parents] indicated that their child hadbeen initially described as one or another type of ADHD, while 44%stated that their child had a dual diagnosis of AS and a form of ADHD”(Romanowski-Bashe & Kirby, 2001, p. 69). Another survey of 514 par-ents of children with AS found that 42.8% had ADHD. An additional30% of the AS children had a diagnosis of Attention Deficit Disorder(ADD) (Romanowski-Bashe & Kirby, 2001).

Tourette’s Syndrome (TS) in the general population is thought to beapproximately 1 per 169 people (Ringman & Jankovich, 2001). Theco-occurrence of both Tourette’s and AS would be 5 per 100 million ifthe two disorders were to occur randomly (Baron-Cohen, Mortimore, &Moriarty, 1999). In actuality, the prevalence of Tourette’s among theAS population is significantly higher. Volkmar, Klin, Schultz, Pauls,and Cohen (1996) recognized 2% of their AS study participants as alsohaving Tourette’s (as cited in Klin, Sparrow, Marans, Carter, & Volk-mar, 2000). This is almost four times higher than the prevalence in thegeneral population. Ehlers and Gillberg (1993) identified 20% ofschool-aged children with co-morbid AS and Tourette’s in their Swed-ish general population study (as cited in Gillberg & Billstedt, 2000). Asecond Swedish population study only revealed 10% of the childrenwho had Tourette’s also had a diagnosis of AS (Kadesjö & Gilberg,2000). Baron-Cohen et al. (1999) contends that the co-morbidity ofTourette’s Syndrome and AS far exceeds the rate of TS and autism.They estimate that 50% of individuals with AS also have TS, whereasonly between 2.6-20.3% of individuals with autism have Tourette’sSyndrome.

Implications for Social Work

The convolution of co-morbidity emphasizes the importance of amultidisciplinary approach for diagnosis, evaluation, and treatment ofindividuals with AS. There is a need for collaboration between socialworkers and pediatricians, psychiatrists, physical therapists, psycholo-gists, teachers, speech therapists, neurologists, occupational therapists,and other service providers. Since no two individuals with AS are alike,clinicians should take special consideration to the implication the syn-drome has on the individual’s day-to-day living (Klin, Volkmar, &Sparrow, 2000).

A viable and extremely important source of information in assess-ment is the parents. The family members are the ones that spend most of




the time with the individual, therefore, they will be able to participateand make a meaningful contribution to the evaluation process. Familymembers will be more likely to recall key developmental milestonessuch as when the child first spoke, or when they first walked, which canassist in the differential diagnosis between HFA and AS.

An area that has not been given much attention in the literature is therelationship of individuals with AS with their siblings. The sibling in-teractions are an important window into the level of social functioningof an individual with AS. Basic social interactions and communicationpatterns at home can and should be incorporated to the evaluation pro-cess as strengths of the individual.

Teachers should be included as key participants in the assessment,planning, and implementation of educational and social goals for indi-viduals with AS. Observations that are made by schoolteachers andparaprofessionals are extremely valuable as they could specify particu-lar areas of struggle for the individual. The day-to-day interaction inclass setting with peers can serve as a mirror to the challenges individ-ual’s with Asperger’s encounter and the strengths they may possess. In-class and after-school activities are significantly important part of a com-prehensive assessment and treatment plan for an individual with AS.

An emphasis on the unique needs of the individual should be the or-ganizing principle of a professional’s approach to working this popula-tion. Professionals working with individuals with AS not only need tokeep the idiosyncratic expression of this disorder in mind, but also needto adopt a long-term case management perspective to assessment andtreatment. As the individual with Asperger’s ages, the social workerwill be presented with a series of challenges depending on the client’sdevelopmental stage, level of family support, social isolation, and per-sonal strengths. Treatment should focus on negotiating the social envi-ronment and learning situation specific social skills. Insight orientedtherapies are not recommended with this population. Cognitive and be-havioral therapies are more appropriate. Collaborating with speechtherapists, social workers can address the client’s issues with semanticand pragmatic speech. To more effectively collaborate with school per-sonnel and potential employers, the social worker providing treatmentought to be fluent in the workings of two Federal laws: The IndividualsWith Disabilities Education Act (IDEA) and Americans With Disabili-ties Act (ADA). As a young adult the person with Asperger’s will needwork with vocational and guidance counselors to plan their post highschool endeavors. Many of the individuals with AS are highly intelli-gent, articulate people who will need a social worker to help them match




their strengths and capabilities to appropriate post-secondary educa-tional or vocational opportunities. These individuals go to universityand hold professional positions. It is crucial that practitioners not under-estimate the potential of a client with AS. Early intervention is critical totheir success.

Social workers may be tempted to focus solely on the needs of the in-dividual with AS. However, other members of the individual’s ecosys-tem are also in need of assistance. Once the parents of a child with ASlearn of the diagnosis, they will need education and support. To helpdeal with a new diagnosis, social workers should create psychoeduca-tional support groups for parents. Parenting support groups for parentsof children with AS are helpful because often parents have begun avoid-ing social situations because of their child’s difficult behavior. Thesepsycho-educational support groups can also be instrumental in helpingthe families understand the unique learning needs of children with ASand how to advocate effectively for those needs. The groups can supportparents in working with schools to meet their child’s needs or help themdecide when alternative school placements are necessary. There are fewservices specific to AS, therefore, social workers will need to link fami-lies to services and develop services in areas where there are none.Again, a case management approach is recommended, here emphasiz-ing a need for effective communication between service providers andfamily members.

The siblings of children with AS may need support in understandingwhat it means to have a brother or a sister with this developmental dis-ability. Because children with AS may not look like something is differ-ent about them, this can be very confusing for the siblings and peers.There may be a unique stigma attached to having a sibling who looks“normal,” but may behave oddly.

The classroom teachers and administrators are key people in the eco-system of a child with AS. More than likely, these professionals are un-familiar with AS. The social worker’s role is to educate principals andteachers as to the needs of children with AS, as well as the legal pro-tections afforded to them under IDEA and the ADA. Social workersshould act as a source of support for the teachers and help them managein-class behavior of children with AS. Part of that management wouldinvolve the identification of the child’s interests and strengths and usingthose as a positive basis for social interaction with peers. School-basedsocial workers should consider using small group formats with thesechildren to reduce their sense of social isolation and to create natural op-portunities to practice social skills.




Within the realm of policy, social workers should be advocating forfull funding for the Individuals with Disabilities Education Act (IDEA) tohelp children and their families to receive special education services. Re-sources through IDEA should be allocated for early assessment and inter-vention. This would require professionals to receive training on thecomplexity of identifying and treating AS clients. A second policychange that social workers should advocate for is a restructuring of SocialSecurity Disability to include monies for the treatment of AS. The moniescould be directly spent on related services such as speech or occupationaltherapy, or Applied Behavior Analysis (ABA). Moreover, the income eli-gibility criterion prevents many families from receiving these costly ser-vices. Private insurance often excludes the treatment of developmentaldisabilities or deem the services as education related and therefore notcovered by the families’ health insurance policies.

Funding for research has begun to increase. Currently, funded researchfocuses upon identifying genetic and neurological structures and causes ofthe syndrome. Some funded research has attempted to estimate the preva-lence of AS. However, funding is needed to develop rapid assessment in-struments with high discriminant validity. These instruments and protocolsneed to be able to detect early indicators of AS, thereby allowing early in-tervention. Funding is also needed for studies that will explore the impactthe syndrome has on the individuals and their families. Furthermore, spe-cific funding should be allocated for the evaluation of effective treatmentsfor the syndrome. These treatments will need to incorporate a multi-disci-plinary approach since the syndrome is so enigmatic.

No single profession currently possesses the knowledge and skills to ef-fectively assess and treat a syndrome as complex as Asperger’s. The socialwork profession using an ecological approach can coordinate and collabo-rate with a team of professionals in the diagnosis and treatment of AS. Witha broad perspective, the social work profession can assist the Asperger’sclient and his or her family in tailoring a unique intervention plan that ad-dresses the idiosyncrasies of the manifestation of his or her Asperger’s.Only through such collaboration can social work solve the riddle of AS.

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