A DIFFERENT VOICE TEEN GIRLS ON THE SPECTRUM

A DIFFERENT VOICE: TEEN GIRLS ON THE SPECTRUM Mary R Cohen, Ph. D Autism Spectrum Diagnostics & Consulting

MY INSPIRATION

WHY GIRLS ARE MISDIAGNOSED, MISUNDERSTOOD OR MISSED v Myths that girls can’t have autism v Thoughts that girls with autism had only severe presentations with intellectual disability v Diagnostic criteria was developed specifically around males (4 to 1 ratio) * v ASD females are more socially aware than ASD males however…. . . v Less obvious “restricted interests”(not necessarily dinosaurs or trains) v Many ASD girls engage in pretend play with dolls or stuffed animals v Likely to be diagnosed with ADD, OCD or anorexia rather than ASD

TALE OF TWO BRAINS • Brain scans show that girls with ASD process social information differently from boys with ASD • Girls with ASD are more similar to typical boys, they process faces and nonverbal cues to a greater degree • They process social information more than ASD boys but less than typical girls. This causes challenges in social situations with their female peers. • Pelphrey 2016

SOCIAL BRAIN ACTIVITY 12 10 8 6 4 2 0 ASD Boys Typical Boys ASD Girls Typical Girls

GIRLS WITH ASD ARE WORKING TWICE AS HARD TO BE SOCIAL

STUDIES OF GENDER DIFFERENCES IN ASD • Girls with ASD scored significantly higher on the Friendship Questionnaire than boys with ASD however they were lower than typically developing girls • Typical boys scored similarly to ASD girls (Head, Mc. Gillivray & Stokes, 2014) • Teachers are less likely to report social communication difficulties for females compared to males with similar issues. • Girls have less severe Repetitive Stereotyped Behaviors (RSB) and therefore at greater risk for not meeting diagnostic criteria (Mandy et al. 2011) • Should the ADOS and ADI-R be revised?

IS THERE A “PROTECTIVE FACTOR” FOR GIRLS • Baron-Cohen’s “extreme male brain” theory: autism caused by fetal exposure to higher than normal levels of testosterone • ASD minds are more focused on “systemizing” (understanding objects & ideas) than “empathizing” (understanding social interactions and other’s perspectives) • Female hormones are thought to protect individuals from ASD unless a number of genetic mutations along with environmental factors is present (Jacquemont et al. , 2014) • While boys are more prone to develop ASD there is still strong evidence that ASD is under diagnosed in girls • Possible 2: 1 ratio instead of 4: 1

GIRLS ARE DIAGNOSED ON AVERAGE 2 YEARS LATER THAN BOYS • Researchers frequently include only boys in their studies*** • Milder symptoms (relatively speaking) girls mask their deficits • Many ASD girls are verbal and outwardly social but are struggling on the inside • Girls are acculturated differently and don’t always present noticeable behaviors • In childhood girls are perceived to be more social (whether or not they are) • Clinicians are unable to recognize the subtle presentation of ASD and the compensatory skills girls with ASD develop *** this is changing!! (Pelphrey et al. , Dworzynski et al. , Mc. Gillivray et al. )

GIRLS LEARN DIFFERENT COPING SKILLS • Girls learn to imitate others to “fit in” • Girls journal behaviors and create “scripts” • Girls are encouraged to be more social by parents, teachers • Girls with ASD are often chameleon-like, adapting to social situations without fully understanding female social rules

BEING A TEENAGE GIRL IS HARD ENOUGH WITHOUT BEING ON THE SPECTRUM!!! • Female social rules and friendships are complex and confusing • Girls with ASD are aware of gossip and know they’re being talked about (not paranoid as sometimes diagnosed by male clinicians) • Girls internalize their pain and may develop anxiety, depression and eating disorders as a result of ASD • Hormonal changes are critical (girls have a self-esteem drop after puberty) • Mean girls, Queen Bees and Wannabees (female social rituals are bewildering) • Often in Special Ed classes which are predominately male • Clothes, fashion, hair and make-up (when will it end!!)

“I GET DEPRESSED ANXIOUS BECAUSE LIFE IS DIFFICULT. IT’S ALL SECONDARY TO THE ASPERGER’S. ” Maya, 24 years of age who was diagnosed with depression at the age of 11 years, had crippling social anxiety in her teens and wrestled with anorexia. Apoorva Mandavilli, The Lost Girls, The Atlantic 2015

ISSUES FOR TEEN GIRLS WITH ASD • 34% experience depression (rates also rising for typical teen girls) • 36 % experience anxiety (rates also rising for typical teen girls) • At risk for anorexia: compulsions around calorie counting/perfectionism, possible sensory issues with food • Gender social issues : girls lose the early “social advantage” over ASD boys • Loneliness and social isolation from girl’s cliques • For girls socialization is about communication and social-emotional relationships • Often treatments that work with ASD boys are inappropriate for girls

GENDER IDENTIFICATION ISSUES • Lack of experience socializing with girls • Boys are easier to understand socialize with • Confused by complexity of female “rules” • Lack of identification with female gender stereotype • Don’t want to fit into the gender binary

HEALTHY SEXUALITY FOR TEEN GIRLS WITH ASD • Importance of understanding bodily changes and puberty • Importance of hygiene regarding menstruation, hair washing, skin, deodorant • Importance of understanding sexual attraction/ romantic feelings and how to handle these • Understanding sexual orientation : Friendship vs crushes • Obsessive crushes • Learning how to use the internet safely and what to avoid!! • Understanding how to safeguard oneself, learn safety skills (how to say no)

BOOKS FOR TEEN GIRLS WITH ASD

BOOKS FOR WOMEN WITH ASD

POSITIVES & NEGATIVES TO BEING A GIRL WITH ASD + - • Fiercely Independent • Creative thinker • Perfectionistic • Nonconforming • Self-critical • Artistic • Masks confusion • Kind-hearted • Internalizes feelings • Caring • Misunderstood

“THE MORE I UNDERSTAND MYSELF THE MORE I CAN EXPLAIN TO OTHER PEOPLE WHAT I FIND DIFFICULT, AND THE MORE THEY CAN HELP ME. ” Maya, 24 years old Apoorva Mandavilli, The Lost Girls, The Atlantic 2015