High-Functioning Autism & Asperger Syndrome in Girls. Prevalence of ASD. Gender Gap. Late Diagnosis

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1 Interdisciplinary Evaluation and Identification of Asperger Syndrome in Females Prevalence of ASD 1 in 150 (US estimate) Boys are identified more often than girls The typical ratio of males to females is 4 or 5:1 Susan Jamieson, M.Ed., Penny Woods, M.Ed., Sarah Welbourne, M.Ed., Nicole Brin, M.A., CCC-SLP, Debra Gomez, Ph.D., Ruth Aspy, Ph.D., and Barry G. Grossman, Ph.D. The Ziggurat Group Workshop presented for the NATTAP Conference November 20, 2008 Gender Gap For higher functioning forms of autism, the dramatic increase in identification in recent years applies only to boys. Girls are not being identified at a higher rate. (Attwood 2006, Wagner 2006) Late Diagnosis Girls are diagnosed at later ages than are boys The consequences of a missed or late diagnosis include social isolation, peer rejection, lowered grades, and a greater risk for mental health and behavioral distress such as anxiety and depression during adolescence and adulthood. High-Functioning Autism & Asperger Syndrome in Girls (Wilkinson, 2008, p.3) 1

2 The Triad- Symptoms are similar between boys and girls Reciprocal social interaction skills Communication skills Presence of stereotyped behavior, interests, and activities Quality of Social Relationships Among typically developing four year olds significant gender differences were found in the areas of quality of social relationships using the Social Responsiveness Scale (SRS), Social Cognitive Skills Questionnaire (SCSQ) The higher the fetal testosterone level the poorer the quality of social relationships Knickmeyer, Baron-Cohen, Raggatt, Taylor, (2005) Girl Talk - Social Differences Better superficial social skills Less hyperactivity Less aggression Friendship questionnaire General population - females score higher than males ASD group both males and females score significantly lower than the general population with no difference between genders Baron-Cohen and Wheelwright, 2004 Empathy Quotient General population women score significantly higher than men Adults with HFA (male and female) score significantly lower than matched controls Baron-Cohen and Wheelwright, 2004 Empathy Using the EQ and Reading the Mind in the Eyes Test with 6 to 9 year olds from the general population IQ did not correlate with performance on the tasks Girls scored significantly higher than boys Chapman, E., Baron-Cohen, S., Auyeung, B., Knickmeyer, R.,Taylor, K., & Hackett, G. (2006). Fetal testosterone and empathy: Evidence from the empathy quotient (EQ) and the reading the mind in the eyes test. Social Neuroscience, 1,

3 Girl Talk Communication Differences Girls with ASD exhibit better language and communication skills than do boys with ASD Girls make more eye contact by age 1 (Lutchmaya et al. 2002) Restricted Interests Among typically developing four year olds significant gender differences were found in the area of restricted interests using the AQ The higher the fetal testosterone level the more restricted interests especially in boys Knickmeyer, Baron-Cohen, Raggatt, Taylor, (2005) Behaviors Vs. Core Features The behavioral phenotype may be different, although the core features may be as common in girls as boys, making girls less obvious to identify. circumscribed interests may be more social in nature in girls animals, dolls pop-groups Girl Talk Circumscribed Interests Fewer special interests. When special interests are present, they tend to be more social. Animals Princesses Fantasy kingdoms Unicorns Doll play Classic literature Imaginary friends Girl Talk- Recent Findings - HFA 18-23% of Adolescent girls with Anorexia also have signs of AS (Gillberg & Billstedt, 2000) The Extreme Male Brain Autism has been described as an extreme manifestation of some sexually dimorphic traits or an extreme male brain Baron-Cohen (2002) 3

4 Fetal Testosterone Levels Gender differences are partially accounted for by differences in fetal testosterone levels (Chapman et al. 2006; Auyeung et al. 2006; Knickmeyer et al. 2005). The number of autistic traits typically developing individuals exhibit is directly correlated with FT. (Auyeung, Baron- Cohen, and Wheelwright) Sex differences in the general population Typical males score higher than females on measures of autistic traits Autism Spectrum Quotient (AQ), - child and adolescent versions (Auyeung et al. in press; Baron-Cohen et al. 2006) QCHAT gender differences confirmed in children as young as 18 months (Allison et al. in press; Baron-Cohen et al. 1992; Baron-Cohen et al. 1996) Assessment of ASD in Females Girl Talk Fewer referrals Referral bias: Fewer females referred for assessment because display better expression of emotions and exhibit less anger and physical aggression Camouflage: females are more passive and skilled at using modeling and imitation. They can hide their difficulties better Peer mentors: Girls with AS are more likely to be mothered by their female peers Attwood & Grandin (2006). Asperger s and Girls. Test Error There are no objective measures that can be used for accurate diagnosis (Freeman & Cronin, 2002 p.1). Tests are tools. Girl Talk- Instrument Bias Instruments tend to exclude symptoms and behaviors that are more typical of females (Wilkinson, 2008) Freeman & Cronin (2002). Diagnosing autism spectrum disorder in young children: An Update. Infants and Young Children, 14(3),

5 When you have seen one person with ASD, you have seen one person with ASD Stephen Shore an adult on the spectrum and author of Ask and Tell Clinical Judgment It is important to remember that ASD is first of all a clinical diagnosis. Therefore, it is mandatory to have a trained and experienced provider coordinate the results of the complex diagnostic process (Freeman & Cronin, 2002, p. 4) Freeman & Cronin (2002). Diagnosing autism spectrum disorder in young children: An Update. Infants and Young Children, 14(3), Not a Cookbook The specific diagnostic criteria included in the DSM are meant to serve as guidelines to be informed by clinical judgment and are not meant to be used in a cookbook fashion (APA, p. xxxii) Baseline Sex Differences Baseline sex differences must be taken into account when measuring social and communication skills Williams, Allison, Scott, Bolton, Baron-Cohen, Matthews, & Brayne (2008). The Childhood Autism Spectrum Test (CAST): Sex Differences. Journal of Autism and Developmental Disorders, 38, Cognitive Patterns in ASD In comparison to those without autism, individuals with ASD (male and female) perform more poorly on tests where females are usually superior to males (faux pas test or reading the mind in the eyes task), but perform better on tests where males usually outperform females (systemizing, pattern recognition- embedded figures, intuitive physics test) Knickmeyer, Baron-Cohen, Raggatt, and Taylor, (2005) Williams, Allison, Scott, Bolton, Baron-Cohen, Matthews, and Brayne, (2008) Team Approach 5

6 Multidisciplinary vs. Interdisciplinary Interdisciplinary vs. Multidisciplinary Summary Multidisciplinary Members represent different disciplines Members provide information towards decision making Decisions made in isolation Parallel play Source: GRECC Education Program Interdisciplinary Members represent different disciplines Members provide information and combine input into a common decision making process Decisions are made by a group Cooperative play The multidisciplinary approach involves the compilation of work from professionals in various fields The interdisciplinary approach involves professionals from various fields collaboratively working together The interdisciplinary approach results in the strongest diagnostic and programming decisions Team Members Team Members Expertise in the area of autism spectrum disorders is much more important to a thorough, accurate diagnosis than particular credentials. (Ozonoff, Dawson, & McPartland, 2002, p.46) [emphasis added] A job title or position is not a strong indicator of who is appropriately qualified... Evaluation professionals must have prior education, training, and supervised experience that includes extensive exposure to autism-spectrum disorders. (Monteiro, 2006, p.4) Contact Information Ruth Aspy, Ph.D. aspy@texasautism.com Penny Woods, M.Ed. woods@texasautism.com Barry G. Grossman, Ph.D. grossman@texasautism.com Nicole Brin, M.A., CCC-SLP brin@texasautism.com Susan Jamieson, M.Ed. jamieson@texasautism.com Sarah Welbourne, M.Ed. welbourne@texasautism.com Debra Gomez, Ph.D. gomez@texasautism.com 6