Neurodiversity

I’m Right Here: Rudy Simone on Life as an “Aspergirl”

Rudy Simone is a writer, jazz singer, and stand-up comedian in San Francisco. She’s also a proud member of an often-misunderstood minority-within-a-minority: a woman on the autism spectrum — or as she prefers to call herself, an “Aspergirl.”

Unlike autistic author and animal-behavior expert Temple Grandin — whose life was the subject of an acclaimed HBO biopic starring Clare Danes — Simone wasn’t diagnosed until she was in her 40s. Diagnosis in mid-life is common for women with Asperger Syndrome. Often highly intelligent and articulate, they’re able to mask their social deficits while leveraging their ability to focus intensely into achievements in school and the workplace.

Simone had a relatively happy — if eccentric — childhood, but when she hit adolescence, the social tide seemed to turn against her, washing away most of her friends. Suddenly, her trusting exuberance and hyper-focus made her weird in the eyes of her peers, and a convenient target for bullying and abuse. One day, Simone’s chief tormentor at school brutally beat her in front of a cheering crowd of older kids. Humiliated, the 12-year-old Simone stopped singing and laughing in public.

These problems intensified as Simone got older. She abruptly walked out on jobs, apartments, friendships, and relationships when things didn’t work as planned. Sometimes the people that Simone left behind when she burned a bridge would tell her there was something “wrong” with her, but she could never put her finger on it. She didn’t feel wrong. Instead, she felt like the world was wrong — a place designed to make other people comfortable, but not her. (Spectrumites sometimes call this feeling “Wrong Planet syndrome.”)

“We don’t know what our burden is until we’re diagnosed,” Simone writes in a moving and provocative new book, Aspergirls: Empowering Females with Asperger Syndrome, “but we can tell other people don’t seem to be carrying it.”

Aspergirls is partly a personal memoir and partly a book of advice and support for women on the spectrum and their parents and friends. Simone has asked a chorus of Aspie women to speak through its pages, and this personal testimony is deeply moving. Instead of the bulleted lists of traits and diagnostic criteria that fill many books on the subject, Aspergirls offers snapshots of autistic lives from the inside.

I am eccentric and well loved, I have a good sense of humor and am a good mimic. But I cannot feel connection with others that lasts over space and time. Many mistake my one-on-one “intensity” for some kind of special friendship “intimacy.” I operate at a depth most people do not. — Camilla

I nearly failed my nursing placement as people thought I was arrogant, argumentative, and egotistical. I was devastated to find I had offended them. — Kylli

I do remember the moment I realized I was no longer attractive. It gave me some relief, actually. — Widders

The taxi driver pulled into my street and asked “Where are you?” I answered from the back seat, “I’m right here.” — Hope

One of the reasons many women on the spectrum have to survive on the wrong planet for decades before getting a diagnosis is because all women are taught to minimize their eccentricities by mimicking and echoing their peers. (For similar reasons, many lesbians only realize that they’re gay in middle age.) Aspie guys can also be more confrontational than Aspergirls, and quicker to erupt in rage when their senses get overloaded, which brings their condition to the attention of parents and teachers. This may have as much to do with traditional gender roles as it does with the distinctive traits of men and women with autism.

Even after diagnosis, life as an Aspergirl can be particularly tough. Frequently stereotyped as “high-functioning,” Aspie women have to endure people telling them that their autism isn’t “that bad” — while inwardly, they’re melting down in the face of hyper-stimulation and social cues they find difficult to parse. In general, women are taught to suffer their tribulations in silence; the extra effort of maintaining a high-functioning facade is exhausting for Aspergirls and can get worse as they grow older, says Simone.

Another problem Aspergirls face as they age is that nearly all of the support services available for autistic people are targeted to children and their families. While millions of dollars are raised every year for research into the causes of autism and therapeutic interventions for kids, very little money is available for employment counseling and other services for autistic adults.

The catchy title of Aspergirls seems to refer only to young women, but the book also addresses love, marriage, and childbearing for mature people on the spectrum. Aspies are frequently portrayed in the media as loners who are incapable of real intimacy, but many of the women in Simone’s book (as well as Simone herself) have been able to forge satisfying relationships, sometimes with partners who are also autistic.

Simone makes the observation that Aspie women tend to be less strictly defined and limited by gender than either their autistic male counterparts or their non-autistic (“neurotypical”) peers. In many autistic women, “anima and animus seem to be of equal influence and power,” she writes. This may even be helpful to Aspie women working in the sciences, where the distinctive strengths of many autistic minds — precision, intense focus, a propensity for visual thinking, and database-like recall — can contribute to success, as they did in Grandin’s case.

Though most of the Aspergirls who speak out in the book consider themselves primarily heterosexual, a surprising number told Simone that their partner’s gender doesn’t matter. “As usual,” she says, “We march to a different drummer.”

In Simone’s life in San Francisco, marching to her own drummer includes undertaking tasks that some experts would assume that an autistic person could barely perform at all — like doing hip stand-up routines that depend on subtle shadings of irony.

Psychologist Tony Attwood describes people with Asperger Syndrome as being less aware of “hidden, implied, or multiple meanings” in speech, which leaves them particularly vulnerable to bullying and pranks. (The anecdote in the book about Hope telling the cab driver “I’m right here,” when he had really asked her about the location of her house, is an example of the autistic tendency toward literal interpretations of speech.) Simone, however, is able to exaggerate some of her Aspie traits — including a seemingly guileless monotone delivery — as part of her wry comic persona.

Starting today [10/27/10], and for the next two weeks, I’ll be hosting a group interview with Simone on the Well, one of the longest-lasting online communities. Most of the Well’s discussions are only open to paying members, but as part of a series of author interviews called Inkwell, my conversation with Simone about Aspergirls is readable by anyone on the Web. Interested readers can send their own questions for Simone to [email protected]. When I get your questions, I’ll post them into the topic so Simone can respond. Indicate clearly if you want to remain anonymous.

Please join us on the Well.

More information about women on the autism spectrum and related subjects:

1. The Autism Women’s Network.

2. The Geek Syndrome, my 2001 article for Wired magazine on autism in Silicon Valley. Not about Aspie women in particular, and a bit dated by now, but helpful as a general introduction to Autism Spectrum Disorders.

3. An Aspie in the City by Carlin Flora.

4. The Good and the Bad, a response to An Aspie in the City, by Lynne Soraya, who writes a superb column called “Asperger’s Diary” in Psychology Today.

5. Communication and Emotional Expression (Part 1): The Female Factor by Lynne Soraya.

6. At the Wedding: How the “ungirliest” girl discovered she was girly after all by Lynne Soraya.

7. Asperger’s Syndrome in Women: A Different Set of Challenges? by Catherine Faherty.

8. Help4Aspergers.com, Simone’s autism website.

9.  Interview with Simone on the Autism Women’s Network. (Note: Audio starts automatically.)

10. The Autistic Self-Advocacy Network.

11. Am I More Than My Autism? by Rachel Cohen-Rottenberg.

12. Reflections on Mature Autism, by Rory Patton.

Steve Silberman is the author of the still-reverberating Wired magazine article on autism in Silicon Valley, The Geek Syndrome.  Steve blogs at NeuroTribes, where I’m Right Here: Rudy Simone on Life as an “Aspergirl” first appeared (under a Creative Commons license), and is currently at work on a book about autism and neurodiversity.

Rudy Simone on 10/29/10 in Art/Play/Myth, featured | 2 Comments | Read More