Thoughts and ideas as a woman with ASD

Ruth Elaine Hane

The needs of girls and women with autism, different from those of neurotypicals, have recently caught the attention of the autism community and the public, in general. Girls with autism are a minority population frequently exhibiting dissimilar behaviors than boys who are diagnosed five to one with autism spectrum disorder (ASD). Girls in our culture are encouraged to “act like ladies” and blend in, whereas “boys will be boys” is often given as the reason for males who may have behavioral issues. Teachers, care givers, professionals and parents allow more latitude and tolerance for boys and men who are disruptive and act out. Since the media and toy makers offer mostly scripted play for girls, girls who have other more active interests may be denied an opportunity to pursue these and may turn inward, often becoming depressed. If we include these compliant girls who withdraw, figuratively speaking, by reading in a corner and do not openly express their preferences, the ratio of boys to girls diagnosed with ASD might change considerably.

As a young girl, I was both quiet and active, dividing my play time between a girlfriend and a group of boys my age and older. The girl-type play I engaged in was more about organizing, making rules, designing the doll house, rather than playing dolls and pretending to be a mommy. I preferred to build forts, climb trees, and collect river frogs with the boys. The neighbors disapproved of my “tom girl” ways, but fortunately did not prevent me from being athletic.

Developing social skills in the hierarchal world of boys is beneficial for executive function, and building relationships through cooperation, frequently a style of play that girls prefer, prepares us to navigate the often confusing social world.

For decades most girls in our culture have been falsely told that they can follow their bliss by defining their identity as wives, mothers, wage earners, or, if preferred, remaining single, being mothers and having careers. The reality is that most women are still expected to fulfill conventional roles. They can attempt to have it all, provided they continue to nurture and care for the significant people in their lives. In Mother-Daughter Wisdom, Christiane Northrup, M.D., wrote: “Many aspects of my career have been a laboratory for experiencing the difference between conventional (rule bound) morality and postconventional morality (the combined wisdom of the intellect and the heart)”

Through personal experience and observation, I have noted that girls and women with ASD are expected to blend in and succeed without significant help and within the paradoxical standards set for all women. There is a bias, an unfair expectation for girls and women diagnosed with ASD, who often appear to be ”normal” but have many bioneurological differences, such as weak executive function, sensitivity to bright lights, loud noises and confusing environments. If a girl or woman has an emotional outburst as the result of her ASD issues, she is not excused, and is in addition given an uncomplimentary label. Boys and men who have meltdowns, on the other hand, are often considered to be normal boys, or, typical guys. This is not to discount the many challenges males face, but to point out that females are often held to a different standard of behavior and achievement. A double standard is evident when a boy who swears in class is reminded of the rule for no swearing, and a girl is sent to the principal’s office, or home, for the same behavior.

Since autism is a spectrum disorder, there is great diversity among girls and women. Some, like me, are self-taught anthropologists, fascinated by social rules, and body language and complex relationships. Others find relationships uninteresting. Temple Grandin, a famous woman with ASD, stated during an interview with the BBC recently that she believes women’s magazines are boring. When asked what she does like to read, Grandin replied, Scientific American. It contains facts – science.

Grandin talks about having an uneven development, estimating her emotional interests are that of a ten-year-old; whereas, her intellectual development and job-related interests are genius, well above at the adult range. In my own case, my psychotherapist suggested that my emotional development was that of an eighteen-month-old--a toddler! With the help of group therapy and through meditation, I raised my emotional and social processing to function as an adult. Lopsided mental and emotional developmental is not uncommon for individuals who are anxious and fearful. Anxiety and fear of social situations are two of the several core characteristics of autism.

Ask and Tell, Self-Advocacy and Disclosure for People on the Autism Spectrum (Shore, 2004) presents many suggestions and ideas for setting boundaries and navigating the complexities of the social world. One of the greatest challenges is in understanding the mental states of others. Children with ASD are stymied when a person’s words do not match her actual intent. A classmate may say one thing, but mean another. For example, a bully may say, “Cool haircut!” accompanied with a sly smirk meaning that the haircut was anything but cool. Not being able to read subtle differences in facial expression between a smirk and a smile, may determine acceptance, or, ridicule, in school and society.

While peer approval of a haircut is important, especially for a teenager, the greater danger is in not effectively reading sexual messages. Most women and girls with ASD lack the skills needed to avoid sexual exploitation, often ending up choosing bad relationships. Zosia Zaks, an adult with autism, writes about relationships in Life and Love: Positive Strategies for Autistic Adults (2006), in her chapter Keeping Ourselves Safe.

Many people frequent the numerous ASD chat rooms and websites; I believe that while most of the sites are helpful, they are not a substitute for face-to-face friendships in group settings. When we meet someone in person, we are presenting ourselves in an authentic way. We are not able to easily fabricate an ideal image of ourselves. Everyone with ASD deserves to have safe places to meet others in person and to develop healthy friendships and relationships.

Several years ago, I formed an adult social group in the Twin Cities, the Aspie Get-Together (AGT). Because of uneven emotional development in the group, we agreed at our founding meeting to include a rule for no dating between the group members, so the AGT would become a positive place to make friends. Now in our ninth year, the AGT developed guidelines and rules, voting this past fall to allow dating.

Autism interventions and services are largely based on observations of boys, not girls. Just as the medical community is discovering that male and female health needs are different, for instance, that heart attacks in men and women present with uniquely varied symptoms, the autism community must not disregard the needs of ASD girls and women. We are obligated to adjust our thinking and allow for a greater diversity for girls and women, raising the potential for leadership, creativity and individuation.

Northrup, C. (2005). Mother-daughter wisdom. New York: Bantam Dell.

Shore, S. (Ed.). (2004). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company.

Zaks, Z. (2006). Life and love: Positive strategies for autistic adults. Shawnee Mission, KS: Autism Asperger Publishing Company.

Ruth Elaine Hane is an adult diagnosed with high-functioning autism, member of the Autism Society of America Board of Directors, contributor to Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum.

Courtesy of AAPC

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