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The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:
“Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”
Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl.
Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ‘sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”
Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.
The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:
Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to.
I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?
Let me clarify that I was talking about the “Asperger’s” thing. I’m not talking about actual autism. I’ve known people with autism and it’s very real.
Give me a break. How’s labeling everything autistic supposed to be edifying to people? There may be a few legitimate cases, but about 90 percent of the time it’s an excuse to pathologize being different. “I always knew there was something different about me.” Gee, that must mean that part of your brain doesn’t work as well as everyone else’s and of course society knows what it’s doing and sets the proper standard. There are adults using the “Asperger’s” thing to explain why they couldn’t get a date to prom and sat alone at the lunch table. I can’t find it anymore, but Liane Willey admitted that she was trying to recruit people for the label.
Some people don’t want to waste their time pathologizing the stupid mistakes they’ve made. They’d just rather chalk it up to experience and move on. Some people don’t care to pathologize their quirks or differences. People don’t all tell sob stories after encountering a few rude people, either.
As I said, some cases might be legitimate, but this whole witch hunt is out of hand.
Julie, maybe the first guy you saw was uninformed, but I thought love of horses was one of the stereotypical obsession of AS girls. (And I am assuming you are not my relation who bought a horse farm for her family– including a horse loving daughter and a son with a diagnosis and services, but what he has was never shared with me).
I think the starting point for under-diagnosis is the relatively recent understanding of this disorder in the english speaking world. As with most diseases, medicine deals first with the men, then with the women (heart disease has seen the same history of under-diagnosis in women, but that trend has started to be corrected).
My sister and my mom both have AS so I am well aware of what it seems like in women and girls (They are from the undiagnosed generations, I think both have heard about the syndrome. I told my sister I though she had it– there was context and it seemed like a very appropriate moment to tell her because her challenges were impacting her career and had created a couple of life threatening situations– and she seemed relieved to have a name for the challenges in her life and to hear exactly what the challenges were… I think it was big aha moment for he. I can tell she has been trying to learn facial expressions and trying to diversify her conversation away from her interests. My mom is less agreeable with the idea that she might have AS, but I am sure of her too. Growing up I learned not to express through my face because it created problematic interaction with both my sister and my mother. When I went away to college I began to express again and now whenever I am with my sister or my mom they become confused by my facial expressions). The obsessive interests can run a range and while they sometimes fit with our concept of girls’ interests, they can also tend toward the geeky.
I think AS can be very hard to diagnose and differentiate from other problems. The diagnosis seems to involve both quantitative and qualitative questions. When is a deep interest in something an obsessive interest? When do poor social skills become a clinical issue? Which metaphors are obvious to an NT child that are challenging for one with AS? Combine the vagueries of diagnostic criteria with the normal range of development expected at any age and diagnosis becomes very challenging. Personally, I think the diagnostic criteria are in need of some revision and that too few professionals have had enough experience of the syndrome to understand what Asperger’s really looks like. On the other hand, I think I can spot an adult woman with Asperger’s from about fifty yards away because I know it intimately. In kids I think it is much harder to be sure and a professional would need to spend a lot of time with a child to rule out other problems.
@Joseph,
I think you’re describing more than a few individuals I’ve known…………….
That reminds me of this:
http://elvenjedi.livejournal.com/251258.html
“Because I’m sick of seeing that ‘Tribute to the Nice Guys’ thing. Retort:
“This is my tribute to the nice girls. To the nice girls who are overlooked, who become friends and nothing more, who spend hours fixating upon their looks and their personalities and their actions because it must be they that are doing something wrong. This is for the girls who don’t give it up on the first date, who don’t want to play mind games, who provide a comforting hug and a supportive audience for a story they’ve heard a thousand times…”
You know how some self-proclaimed “nice guys” throw themselves at women who throw themselves at male jerks and claim “we’re finishing last, all women want jerks instead of us!” as if the other women, their female counterparts, don’t even exist?
I wonder how much of the denial of women and girls having ASD/AS is the same kind of thing. You know, people claiming that guys with ASD/AS finish last because the cheerleaders pick the Big Men On Campus instead and “women can get sex whenever they want.”
1259 days ago
[...] “rich and dark mezzo soprano voice,” today’s Charlotte Observer notes. Sawyer was not diagnosed with autism until she was 17 years old. She started piano lessons and performing with school choirs at the age [...]
Emily:
Sounds like you might have a Sensory Processing Disfunciton (SPD).
see yourtube on research ongoing: http://www.facebook.com/ext/share.php?sid=98788985626&h=Y6xow
We think our 10-year old has SPD and are having a he\\ of a time avoiding a knee-jerk ADHD diagnosis, so it is off to the city of brotherly love to meet with Dr. Schaaf.
As a psychologist / Clinical Director at the Fay J. Lindner Center for Autism and author of the newly published book “Girls Growing Up on the Autism Spectrum”, I am pleased by the recent media attention to understanding females with autism spectrum conditions. Many of the girls in our Girls Programming come to our center having had very little interaction and experiences in connecting with other girls who are like them. One of our teen group participants stated emphatically “this is the only place I have felt accepted, understood, and that I belong”. At our center we are working on developing clinical and research programs to meet the learning needs of females with ASDs across all ages. It’s an exciting endeavor for all of us, including our clients.
Website for our book on girls with ASDs: http://www.jkp.com/catalogue/book.php/isbn/9781843108559
I had some traits of Aspergers as a child (less so as an adult). As a child I was obsessed with ballet and cats, and I refused to wear anything but stretch leggings for several years (sensory issues I’m sure). I don’t think I would have ever qualified for a diagnosis though.
I did have diagnosed issues with auditory processing, anxiety, speech, and dyslexia though. I think autism spectrum disorder have a great deal of crossover with childhood onset anxiety/OCD issues and learning disabilities. Perhaps everything exists on a spectrum.
You know, the bullying I went through was not exactly “normal” – at least it was not the garden variety bullying that my son (and many other boys) unfortunately went through.
Noone ever hit me. It was much more subtle, and for the good part was morphing into exploitation. For instance, there was a girl who used to phone me every afternoon and ask me to give her answers to math homework. Day in, day out, for months. If I did that, she would be my friend. If I refused to do that, she would give me the guilt trip of my life. Was this bullying? Yes, it was. It was as impossible for me to stand up to her based on emotional/social blackmail as it was for my son when he was faced with physical threats.
Comment:
Wait, hold it… bullying is not “normal”?
wow, I kind of thought it must be as well.
I mean, was I really such a freak? Everywhere I went, they found something about me that just didn’t belong. But the things they hated me for were things I wouldn’t or couldn’t change.
life is so much better after 40. ;o)
Wait, hold it… bullying is not “normal”?
Tara, that sounds like my life!
Fortunately my company never sent me a “conference” like that (they were too cheap!). But I do remember getting the female only questions at initial program evaluation, realizing that the other engineers were not being asked those questions (over twenty years ago, so I forgot what they were), I blacked them out and refused to answer them.
I am old enough to remember that majoring in engineering was being able to be comfortable as the only female in a class of 40, but uncomfortable in a class discussing “Women in the Workplace”… which I dropped (because I had actually worked in a factory, versus those had who just read about it!).
Last year when I attended a Tony Attwood conference, thankfully with my son’s brilliant speech therapist who had become a close acquaintance, I completely broke down when he started talking about the bullying that Aspies have been subjected to. All the memories I had suppressed for over 30 years came flooding back. They are still much too painful to face. I am afraid I will not be functional if I let them out.
Do I see my own quirks now from an autism perspective? You betcha. Both my husband and I can see ourselves in our kids – he says specifically of my stepsons that they’re him taken to an extreme and I can say the same for our girls – they’re a combo of both of us. I don’t think either of us are autistic by any stretch of the imagination but we definitely have traits. I guess we were just the right cocktail.
thanks to Shannon for mentioning Can I Sit With You—–also brings to mind the (unfortunate) “Mean Girls” situation and of psychological bullying.
Tara…sounds like a freaking nightmare. I can’t even travel with other people if there’s a plan to share rooms, etc. I have to have my own room, and they have to be people who understand that some folks can’t hang 24-7 with other people. I always travel alone if I can, and at conferences, I usually stand around alone–or end up talking to men, and not in a flirty way or even on purpose, but in a sciency way, by accident. It’s just how I communicate.
Last Crazy Horn’s piece is like reading my life story. The bullying was simply merciless. And the teachers/counselors/principals? In that day and age, just as likely to blame the bullied (for somehow “attracting” it) as to do one damned thing about the bully. For me, it was daily–extending to phone calls after school and visits to my home to attack me–it was daily, it was systematic, it was everywhere I went, and it lasted for years. I thought incessantly about killing myself and cried all the time “for no reason.” I laid awake at nights with indescribable anxieties covering everything from burglars invading to the house burning down to who was going to try to kick my ass at school the next day.
Boy, am I glad that’s over.
@Emily,
I could have written most of this, including specific episodes in spite of being born and raised on different continent. Librarian refusing to give me “age-inappropriate book” – check. Bullied between ages 6-14 – check. Missing clue when it comes to communication with women – check.
Last year my company sent me to what was supposed to be “professional women” conference. As I bluntly told my manager the next day, it was one big, fat sensory overload and IMHO quite a waste of time and registration fee. Lunch table was prepopulated by several already seated ladies from the same company. They were, however, mostly engaged in lady-like endeavours such as marketing and HR management whereas I am that elusive animal even at this day and age – staff engineer. I had to take one of available places and two of them talked literally over my head for the whole hour, barely acknowledging my presence. Granted, I was probably giving off non-verbal signals of “unless you shut up for a minute I just might lose it” kind. For a moment, I was transfered back in time to my middle school years where I always had the distinct feeling of not being quite the same species as most people around me. That feeling was pretty much gone once I got myself into science and engineering oriented high school, university and workspace but from time to time I do get reminded that it is possible to stray out of the Aspie nature reserve which I ordinarily inhabit.
Shannon is absolutely right about Last Crazy Horn.
“Has having an autistic child made you more aware of your own “quirks”?
Most definitely so. I see things in myself that I would have never questioned until my son’s diagnosis. The light and sound issue is a biggie. But that may be just the fact that my mother was profoundly hard of hearing growing up (she had cerebral palsy) and I almost never had noise to deal with in the house. It’s certainly been on my mind.
“Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?”
Very much so. Many in my family line. Most interesting is that both my dh and i have traits, but neither are dx-able. It helps me see that the whole population is a range/spectrum.