Rudy Simone, a San Francisco singer, writer and stand-up comic, didn’t learn that she was on the autism spectrum until her mid-40s. Simone has Asperger syndrome — a high-functioning form of autism that leads to social problems but no intellectual disabilities — which, like all forms of autism, appear much more commonly in boys than in girls. Ten times more men are believed to reside on the spectrum than women.
But some experts think the real prevalence of Asperger’s in girls may be much higher than believed, because girls tend to be far better than boys at concealing its symptoms, masking social problems and hiding the repetitive behaviors often associated with autism. So, many women go undiagnosed until middle age, along the way given other labels and therapies that do not address their real issues.
To help make up for the lack of resources available to girls with Asperger’s and their families, Simone wrote Aspergirls: Empowering Females with Asperger Syndrome. Healthland spoke with her recently.
How did you come to write this book?
I’m 47-and-a-half and I didn’t hear the word ‘Asperger’s’ until three-and-a-half years ago. I couldn’t find enough information on females on the spectrum and the word ‘Aspergirls’ just popped into my head, the way good ideas sometimes do. I thought it was a fabulous title and there was a gap in the literature on females on the spectrum and so …
Do you think Asperger syndrome is less common in girls or do you think it’s just that more girls go undiagnosed?
I don’t think they are rarer. There really is a very burgeoning awareness that women on the spectrum are better actors. There is more pressure on us from childhood to be social and to behave in a way that is not shocking or strange. We are good actors, and for most of us that’s why we go undiagnosed or misdiagnosed.
I had to diagnose myself. I contacted several psychiatrists within a 500-mile radius and I couldn’t find a single doctor willing to believe me. [For the book], I made sure to interview only [formally] diagnosed women because I didn’t want a backlash afterwards saying, She’s just interviewing quirky women. I wanted to avoid criticism like that, to compile a composite picture of what women on the spectrum are like, how our traits manifest and the different experiences we have, [often] because we’ve gone undiagnosed all our life.
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What are some of the key differences you see in girls with Asperger’s, compared with typical girls?
A lot of challenges don’t appear [until] puberty. We don’t progress to so-called age-appropriate behavior and act like neurotypical women. We tend to have the same obsessive interests throughout our lives. We don’t change in the way people often change at puberty, and that makes us stand out. We tend to lose friends and be bullied. We all share that experience. …
We’re frightened of people. Our primary emotion is fear. [The concept of] other people stimulates the amygdala in our brains, which causes adrenaline overload: this causes the fight-or-flight [response], or freezing. Some will shut down when adrenaline overload happens. Some shut down so much that they don’t speak, and suffer from selective mutism. Other clues include stomach issues. These can all go unwitnessed. They can be seen as piecemeal things that have nothing to do with one another, but they’re all clues.
Sensory issues are [also] now recognized as part of the autism spectrum package and they are universal. What the particular issues are may differ from person to person, but they’re intense and completely color our experience of life.
I understand that a lot of girls with autism spectrum disorders show difficulty going from high school to college.
Yeah, that’s one of many difficult transitions for lots of reasons. Many of us had a hard time getting through high school because of social and sensory overload. If it were just the learning and schoolwork, it would be O.K., but if you are bullied and having sensory issues — well, college is more of the same. The expectations to [make friends and to be social] are higher, and the workload is heavier. Even though we may be intellectually more than capable, emotionally and sensorily, we may have a hard time. There really should be autistic training and support at every single learning institution.
What are some advantages that girls on the spectrum have?
We have incredible focus. I’ve written six books in three-and-a-half years. It frees you up to be that focused on what you want to do. [The key is] to encourage that focus and guide it if necessary so that it expands to be useful and marketable. Temple Grandin [the autistic professor, author and artist] only wanted to paint horses, and her mom said she should paint something beyond just horses.
We’re also very to the point and direct, which is often seen as rude, but you know where you stand with us. We’re guileless. Even though men sometimes say we play social games, we don’t know how to do that little dance that neurotypical men and women do socially. What you see is what you get with us.
The most interesting I thing found is that not only do we have higher IQs, we have higher fluid intelligence: the ability to be visionary and to connect seemingly disparate concepts, to see patterns. [We also have] the ability to self-teach. Temple Grandin is an excellent example. She taught herself draftsman’s drawing and it took her two weeks.
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Some researchers have theorized that anorexia may be a female-biased manifestation of Asperger’s, in which the obsessive focus is turned on eating.
I don’t have statistics on that, but it does seem to be a very common part of autism. We very much like control and when kids are forced to eat what the school and parents want them to, it [backfires]. We also have food aversions and also want to be liked, and we might think if we look more like the girls on TV or in magazines, people will like us. We can get self-destructive and, because of bullying, [seek] ways of making ourselves very small. It does seem to be very prevalent.
Do you think girls self-medicate in other ways too?
I have been asked that. I’ve interviewed many people and asked if they drink recreationally or smoke pot, and what I’m finding is we like to use drugs in small doses. But because our bodies are so intolerant, it almost seems like we can’t abuse [drugs too much] because we get so sick. We are so sensitive even to vitamins or prescription drugs. We tend to need one-third of what other people need.
Do you have advice for girls on the spectrum in dealing with sensory issues?
Lots of it! I encourage them to list their sensory issues and have a sensory ‘tool kit’ to take with them wherever they go. I show how to create a compact one, including earplugs or noise canceling headphones; something they can stroke or squeeze for comfort; something that smells good because of smell aversions; and a hat and sunglasses because lots of the time, light and eye contact are difficult; also, gloves for touch and layers of clothing for temperature and security issues. Those are called specific strategies.
In addition to specific strategies, I also encourage total load strategies. Many Aspergirls have post-traumatic stress from bullying, so we can be extremely jumpy. Things like yoga, martial arts, meditation and good nutrition are essential to taming the sensory beast. We’ll always have heightened perceptions, but we can strengthen ourselves and not react quite as debilitatingly.
What about strategies for socializing?
I think that’s the hardest — it’s definitely the hardest part for me. When in school, it’s very helpful to have two neurotypical mentors: one boy and one girl who will sort of look out for you and help you in social situations, be a buffer and translator and someone who can help tell us when we are being bullied, because we often don’t know when we are being bullied till it gets [really bad].
That continues throughout life. We never get more adept. Scripts are helpful. The little niceties that Aspies don’t like, because they seem shallow and insincere, are actually very helpful — like saying, ‘Hi, how are you?’
I think education is also important. There’s too much pressure to learn to be normal. It’s far more important for the world to learn about us: ‘That person’s on the spectrum, that’s why they are the way they are, and that’s why we love them the way they are.’
In your book, you talk about how friends and family should give Aspergirls what you humorously label ‘B.A.L.L.S.’
That stands for belief, acceptance, like, love and support. Belief is believing the diagnosis. First of all, a lot of us spend a lot of time trying to convince people. Believe that the child is an extraordinary person and capable of anything they set their mind to. This applies to autistic people as well, who are often grossly underestimated.
Acceptance is just accepting us for who we are, not trying to normalize us, because that will never happen. Like is because love is really important, but it’s just as important to like your child. We’re often bullied and have few friends. It’s really important that someone tells us that we are likable and are O.K. We hear a lot of ‘I love you, but I don’t like your behavior,’ that’s the message we get from parents.
Love, which goes without saying, is that spiritual quality that is hard to define but you know when you don’t have it.
And support — that sometimes means we’re not quite ready to fly the nest as early as you might like. This can be hard on parents. They want their kid out there in the world and sometimes we need a little more time. A four-year degree might take six years. Sometimes, we need financial and emotional support longer than neurotypical children do.
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What about the question of labeling and stigma? Do you think having the diagnosis helps or hurts children?
The trouble is the way the diagnosis is viewed and the way it is handed down. I have girls write to me who have just received the diagnosis and they are told, ‘You will never be able to have a job or a relationship.’
I say, first, fire that doctor and second, it shouldn’t be a diagnosis, it should be a proclamation: ‘You will have intense focus and interests. The likelihood that you will develop incredible skills or talents is much higher.’ There’s a lot of beauty to being on the spectrum.
Even severe autism contains within it the same kind of repetitive nature and focus. Very autistic people can develop incredible skills — it’s simply a different way of neurologically processing input.
[Psychologist and Asperger’s expert] Tony Attwood says, ‘You don’t suffer from Asperger’s, you suffer from other people.’ [Suffering is] only in the mirror of other people who see our uniqueness as a flaw. That’s because they’re the majority.
Maybe someday being neurotypical will be a diagnosis: ‘Oh, poor thing,s they have less focus and no special interests and a pathological need to socialize — maybe they need a support group.’