The Gender Gap in Asperger : Where are the Girls?

Lee A. Wilkinson

A Case Study Published in

TEACHING Exceptional Children Plus

Volume 4, Issue 4, March 2008

Copyright © 2008 by the author. This work is licensed to the public under the Creative Commons Attri- bution License The Gender Gap in : Where are the Girls?

Lee A. Wilkinson

Abstract

Although there has been a dramatic increase in the recognition of spectrum disorders over the past decade, a significant gender gap has emerged in the diagnosis of milder forms, such as high functioning autism and Asperger syndrome. Statistics indicate that while boys are being re- ferred and identified in greater numbers, this is not the case for girls. Girls are also diagnosed at later ages compared to boys. In this article, the author discusses possible explanations for the un- deridentification of girls with high functioning autism and Asperger syndrome. A case vignette is used to illustrate the gender differences relevant to the understanding and timely diagnosis of girls with this condition.

Keywords Asperger syndrome, autism spectrum, diagnosis, gender differences,

SUGGESTED CITATION: Wilkinson, L. A. (2008). The gender gap in Asperger Syndrome: Where are the girls?. TEACH- ING Exceptional Children Plus, 4(4) Article 3. Retrieved [date] from http://escholarship.bc.edu/education/tecplus/vol4/iss4/art3

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2! Asperger syndrome is an autism spec- Why are fewer girls being identified? trum disorder characterized by problems in Why do parents of girls experience a delay in social relatedness, empathic receiving a diagnosis? Are there gender dif- and understanding, and circumscribed inter- ferences in the expression of the disorder? ests in the presence of generally age- Answers to these questions have practical im- appropriate and cogni- plications in that gender specific variations tive functioning (Volkmar & Klin, 2000). may have a significant impact on identifica- Students with Asperger syndrome often expe- tion practices and the provision of educational rience problems related to their social deficits services for children with autism spectrum and are at risk for academic underachieve- disorders (Thompson, Caruso, & Ellerbeck, ment, school drop-out, peer rejection and in- 2003). Although few studies have examined ternalizing problems such as anxiety and de- gender differences in the expression of pression (Safran, 2002; Wilkinson, 2005). Al- autism, we do have several tentative explana- though there has been a dramatic increase in tions for the underidentification and late di- the number of children diagnosed with autism agnosis of girls with Asperger syndrome. This spectrum disorders over the past article discusses these possibili- decade, a significant gender ties and provides a case vi- gap has emerged in the identi- When I think of my ear- gnette to illustrate the gender fication of milder forms, such liest years, I recall an differences relevant to the un- as high functioning autism and overwhelming desire to derstanding and timely diagno- Asperger syndrome. Statistics be away from my peers. I sis of girls with Asperger syn- indicate that while boys are much preferred the com- drome. being referred and identified in pany of my imaginary greater numbers, this is not the friends- Gender Roles case for girls (Attwood, 2006; Gender role socializa- Ehlers & Gillberg, 1993; -Liane Holliday Willey tion is critical to understanding Wagner, 2006). For example, (1999) why girls with Asperger syn- referrals for evaluation of boys drome are being underidenti- are ten times higher than for girls fied (Faherty, 2006). Since fe- (Attwood, 2006). Girls are also diagnosed males are socialized differently, autism spec- with autism spectrum disorders at later ages trum disorders may not manifest in the same relative to boys (Goin-Kochel, Mackintosh, & way as typical male behavioral patterns Meyers, 2006). This gender gap raises serious (Bashe & Kirby, 2005). For example, girls questions because many female students with might not come to the attention of parents and Asperger syndrome are being overlooked and teachers because of better coping mechanisms may not receive the appropriate educational and the ability to “disappear” in large groups supports and services. The consequences of a (Attwood, 2007). Girls on the higher end of missed or late diagnosis include social isola- the spectrum also have fewer special interests, tion, peer rejection, lowered grades, and a better superficial social skills, better language greater risk for and behavioral and communication skills, and less hyperac- distress such as anxiety and during tivity and than boys (Gillberg & adolescence and adulthood. Coleman, 2000). Likewise, girls are more likely than boys to be guided and protected by !

3! same gender peers and to have special inter- Gillberg, 2000). ests that appear to be more gender appropriate Although each case is unique, the fol- (Attwood, 2006). These characteristics lessen lowing vignette provides an example of how the probability of a girl being identified as gender specific differences contribute to the having the core symptom of autism spectrum diagnostic gender gap in Asperger syndrome. disorder: an impairment in social skills. In The case of Heather is based on the author’s fact, it may be a qualitative difference in so- own clinical experience with students with cial connectedness and reciprocity that differ- autism spectrum disorders. Identifying infor- entiates the genders (Attwood, 2007; Kopp & mation has been removed or altered to ensure Gillberg, 1992). As a result, parents, teachers, confidentiality. Bulleted comments have been and clinicians may not observe the obvious inserted throughout the case presentation to characteristics associated with the male proto- illustrate links between constructs, diagnostic type of higher functioning autism spectrum criteria, and differences in phenotypic expres- conditions such as Asperger syndrome (Kopp sion between boys and girls. & Gillberg, 1992; Nyden, Hjelmquist, & Table 1: Weblinks for Additional Information

Autism Research Centre (http://www.autismresearchcentre.com/arc/default.asp)

Autism Society of America (http://www.autism-society.org/)

National Autistic Society (http://www.nas.org.uk/)

Online Asperger Syndrome Information and Support (OASIS) (www.aspergersyndrome.org)

Organization for Autism Research (OAR) (www.researchautism.org)

The Council for Exceptional Children (CEC) (www.cec.sped.org)

Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) (www.teacch.com)

Yale Child Study Center (http://www.med.yale.edu/chldstdy/autism/)

Case Example: Heather cation and related services. Developmental Heather is currently a fourth grade history indicates that Heather spoke her first student who was diagnosed with Asperger words by 12-18 months and used sentences syndrome and found eligible for special edu- and communicative phrases by approximately

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4! 24 months. She sat unsupported at six usually stayed on the periphery of the group. months, crawled at nine months, and walked She was also described as a shy, undemand- by 14 months. Although no obvious social ing, and even-tempered student who was un- problems were reported, Heather’s parents assuming and soft spoken. While Heather ap- recalled their daughter’s temperament as be- peared to enjoy a special friendship with an- ing inhibited and “slow to warm up.” She other girl at school, she preferred solitary ac- was also a “fussy” eater and had difficulty tivities such as creating small, imaginary transitioning to different food textures. De- worlds with blocks and figures and playing spite some parental apprehension regarding games involving puppies or kittens for ex- early development, they were advised by their tended periods of time. Her teacher voiced pediatrician that Heather’s social and com- some concern over Heather’s reluctance to municative functioning did not seem typical engage in reciprocal conversation and diffi- of a specific or delay culty maintaining focus in the classroom. At and did not warrant an evaluation. home, Heather was viewed as a “sweet” and amicable child who was compliant and well- • Although social and communication liked by friends and relatives. Yet, Heather’s symptoms are the most reliable indica- parents were also troubled about their daugh- tors of autism spectrum disorders in ter’s periods of aloofness, inattentiveness, and young children, they are very difficult lack of initiative and social responsiveness. to identify. For example, we have no precise •Social communication and definitions of mile- The most salient pragmatic deficits may not be stones for social skills feature appeared to be readily discernible because of development com- a significant a non-externalizing behav- pared to motor and qualitative impairment ioral profile, passivity, and language skills (Stone, in reciprocal social lack of initiative. Girls who 2006). There are also behavior and have difficulty making sus- some pediatricians tained and appear responsiveness. who prefer to take a socially withdrawn may also “wait-and-watch” ap- be perceived as “shy,” “na- proach, hoping children will catch up. ive,” or “sweet” rather than hav- Unfortunately, this can delay early ing the social impairment associ- identification and intervention. ated with an autism spectrum dis- order (Wagner, 2006). Heather was enrolled in a preschool program three days per week where she was Heather was evaluated by the school observed to marginally participate in most and found to have age-appropriate skills. The activities and was considered a happy and school psychologist concluded that Heather placid child. Following an unremarkable pre- was a shy, immature, and fearful student school experience, Heather attended a com- whose ability to perform academically was bined kindergarten-first grade class in an most likely affected by an early-onset anxiety early childhood center. In class, she was ob- disorder, word retrieval problems, and/or a served to be a quiet and reserved student who !

5! central auditory processing deficit. Several out Disney videos, playing with her Barbie academic recommendations were offered. dolls, and talking to an imaginary friend. • The diagnosis of another disorder of- • The perseverative and circumscribed ten diverts attention from autism- interests of girls with autism spectrum related symptomatology. In many disorders may appear to be age- cases, girls tend to receive unspecified typical. Girls who are not successful in diagnoses such as a learning disabil- social relationships and developing ity, processing problem, or internaliz- friendships might create imaginary ing disorder. A recent survey of friends and elaborate doll play that women with Asperger syndrome indi- superficially resembles the neurotypi- cated that most received a diagnosis cal girl (Attwood, 2006). of anxiety or disorder prior to being identified with an autism spec- Although Heather did not present with trum disorder (Bashe & Kirby, 2005). behavioral challenges such as temper tan- Unfortunately, a misdiagnosis can de- trums or “meltdowns,” she often refused to lay or prevent implementation of the respond to teacher requests and failed to par- appropriate interventions and treat- ticipate in classroom activities. She was also ment. As a result, many girls may not perceived as “odd” by her peers and seemed receive the assistance and understand- to be in her own little world. It was increas- ing that could make an importance ingly evident from parent and teacher reports, difference in their lives (Wagner, clinical observations across settings, and cog- 2006). nitive and adaptive behavior assessments that Heather might be exhibiting Heather ’s second symptoms characteristic of an grade experience was charac- Social communication autism . terized by continuing difficul- The most salient feature ap- and pragmatic deficits ties in relating and communi- peared to be a significant may not be readily dis- cating with peers and adults, qualitative impairment in re- transitioning problems, poor cernible because of a ciprocal social behavior and task completion, and occa- non-externalizing responsiveness. An adaptive sional oddities in behavior. behavioral profile. behavior assessment con- Teacher reports described ducted across settings indi- Heather as an anxious student cated a moderate deficit in so- with a limited affect, mild eye gaze avoid- cialization relative to same age peers; further ance, and a tendency to withdraw when pre- reflecting Heather’s ongoing difficulty in sented with complex or over stimulating so- mastering the personal and social demands of cial situations. Heather’s parents were also both her home and school environments. concerned with Heather’s lack of social con- Even though Heather demonstrated no spe- tacts and marginal school progress. They re- cific deficit on norm-referenced measures of ported that she had few neighborhood friends, cognitive, language, and academic function- seemed socially detached, and typically en- ing, significant problems were evident with joyed activities such as dressing up, acting pragmatic and qualitative social communica- tion. Heather’s pattern of behavior was con- !

6! sidered consistent with many of the features may be inappropriate. As a result, girls may displayed by children with mild or “high receive less than optimal academic and be- functioning” autism spectrum conditions. A havioral interventions and not realize their formal diagnosis of Asperger syndrome was potential. Further research is urgently needed offered more than two years after Heather to examine the similarities and differences was initially enrolled in school. between males and females to determine • Although girls may appear less symp- whether the diagnostic definition of Asperger tomatic than boys, both genders share syndrome is valid for both boys and girls similar profiles. Research suggests (Attwood, 2007). If gender specific variations that when IQ is controlled, the main do exist, then the predictive validity of the gender difference is a higher fre- diagnosis and developmental course may well quency of idiosyncratic and unusual differ between the sexes. In the meantime, visual interests and lower levels of educators and school personnel should ques- appropriate play in males compared tion the presence of an autism spectrum dis- to females (Lord, Schopler, & Nevicki, order in female students who may be referred 1982). As a result, the behavior and for internalizing problems such as anxiety or educational needs of boys are much depression. Additionally, when a girl presents more difficult to ignore and are fre- with a combination of social immaturity, per- quently seen by teachers and parents severative or circumscribed interests, limited as being more urgent, further contrib- eye gaze, repetitive, , high lev- uting to a referral bias (Kopp & Gill- els of anxiety and attention problems, and is berg, 1992). viewed as “passive” or “odd” by parents, • Over reliance on the male model with teachers or peers, the likelihood of an autism regard to diagnostic criteria contrib- spectrum disorder should be considered utes to a gender “bias” and underdi- (Wagner, 2006). agnosis of girls (Kopp & Gillberg, 1992; Nyden et al., 2000). Clinical instruments also tend to exclude symp- toms and behaviors that may be more typical of females with autism spec- trum disorders.

Conclusion and Recommendations Heather’s case vignette illustrates how girls with Asperger syndrome may have a dif- ferent profile than boys, which in turn, might not be recognized as an autism spectrum dis- order (Thompson et al., 2003). While the gender gap in Asperger syndrome has yet to be empirically investigated, if girls do process language and social information differently than boys, then clinical and educational inter- ventions based largely on research with boys !

7! References Lord, C., Schopler, E., Revicki, D. (1982). Attwood, T. (2007). The complete guide to Sex differences in autism. Journal of Asperger’s syndrome. Philadelphia, Autism and Developmental Disorders, PA: Jessica Kingsley Publishers. 12, 317-330.

Attwood, T. (2006). The pattern of abilities Nyden, A., Hjelmquist, E., & Gillberg, C. and development of girls with As- (2000). Autism spectrum and perger’s syndrome. In Asperger’s and attention-deficit disorders in girls. girls (pp. 1-7). Arlington, TX: Future Some neuropsychological aspects. Horizons. European Child and Adolescent Psy- chiatry, 9, 180-185. Bashe, P. M., & Kirby, B. L. (2005). The OA- SIS Guide to Asperger syndrome. New Safran, J. S. (2002). Supporting students with York: Crown Publishers. Asperger’s syndrome in general edu- cation. Teaching Exceptional Chil- Ehlers, S., & Gillberg, C. (1993). The epide- dren, 34, 60-66. miology of Asperger syndrome: A to- tal population study. Journal of Child Stone, W. L. (2006). Does my child have Psychology and , 34, 1327- autism? A parent’s guide to early de- 1350. tection and intervention in autism spectrum disorders. San Francisco, Faherty, C. (2006). Asperger’s syndrome in CA: Jossey-Bass. women: A different set of challenges? In Asperger’s and girls. (pp. 9-14). Thompson, T., Caruso, M., & Ellerbeck, K. Arlington, TX: Future Horizons. (2003). Sex matters in autism and other developmental disabilities. Gillberg, C., & Coleman, M. (2000). The bi- Journal of Learning Disabilities, 7, ology of autistic (3rd ed.). 345-362. London: Cambridge University Press. Volkmar, F., & Klin, A. (2000). Diagnostic Goin-Kochel, R., Mackintosh, V. H., & Mey- issues in Asperger syndrome. In A. ers, B. J. (2006). How many doctors Klin, F. Volkmar, & S. Sparrow (Eds.). does it take to make an autism spec- Asperger syndrome (pp. 25-71). New trum diagnosis? Autism, 10, 439-451. York: Guilford.

Kopp, S., & Gillberg, C. (1992). Girls with Wagner, S. (2006). Educating the female stu- social deficits and learning problems: dent with Asperger’s. In Asperger’s Autism, atypical Asperger syndrome and girls. (pp. 15-32). Arlington, TX: or a variant of these conditions. Euro- Future Horizons. pean Child and Adolescent Psychiatry, 1, 89-99.

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8! Wilkinson, L. A. (2005). Supporting the in- Willey, L. H. (1999). Pretending to be nor- clusion of a student with Asperger mal: Living with Asperger’s syndrome. syndrome: A case study using conjoint Philadelphia, PA: Jessica Kingsley behavioral consultation and self- Publishers. management. Educational Psychology in Practice, 21, 307-326.

About the Author: Lee A. Wilkinson, PhD is a nationally certified school psychologist and adjunct fac- ulty member at Nova Southeastern University with a practice and research interest in the identification and assessment of children with autism spectrum conditions.

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