I think I'll start by answering that question, based on anecdotal evidence from my non-statistically significant sample of one, who's been chronicled here for nearly two years:
- curiosity
- more curiosity
- and even more curiosity
- loyalty
- surprises and more surprises
- thoughtful concern
- frustration
- rage (see also, anxiety)
- potential
- joy
- talents
- anxiety
- loathing
- desire and longing
- shame
- generosity
- shyness
- spirit
In short, little (autistic) girls are so much like the rest of us as to be very certainly human. [Read uncharacteristic sarcasm here.]
Don't get me wrong. I'm thrilled that the paper of record has devoted a feature article to the problems of girls on the spectrum. I am. I really am.
But I loathe the use of a single study of outcomes for autistic women where the sample is so tiny (not much bigger than my sample of one) to make dire predictions regarding the outcomes for autistic girls. I was especially amused at the really dire terrifying outcome — autistic girls are unlikely to marry! Wow, maybe autistic women are onto something that neurotypicals tend to overlook – that marriage isn't usually such a great deal for women.
The article's strong point: demonstrating why diagnostic ambiguity so frequently plagues family's with girls on the spectrum and showing just how heterogeneous the autism spectrum has become.
More on this article in the days to come . . .
Technorati Tags: autism • Asperger's Syndrome • ADHD • learning disabilities • speech-language disorders • parenting • family life • special education • autistic girls • Emily Bazelon
28 comments:
Maybe you should contact them directly and give them your take!
Best wishes
If outcome is defined by NT standards (things NTs do more often, seek and enjoy more) then the outcome of autistics will never be good.
An autistic adult could be in principle completely happy and accomplished, and still be considered to have a terrible outcome.
There's a paper that explores other ways to look at outcome in the case of autistics. (I don't recall where to find it).
One thing that was truly at the front of my mind throughout the article was that it focused on gender differences solely though autism diagnostic criteria - there is a lot of research showing that NT girls have difficulty with the social aspect of school, simply because well - young girls can be really, really cruel. Would this exacerbate non-NT girls' problems with communication and social interaction? I would be curious to know what both parents and autistic adults think about that aspect of the article.
Re. marriage: Not being married doesn't necessarily mean a person doesn't (or can't) have a close relationship with a partner. I have lived with my SO for about six years now, but he and I aren't married -- neither of us likes the idea of planning a wedding, being fussed over, etc.
While I was glad that the NYT had an article on how AS may present in girls with AS, what kind of numbers are those? Seven girls? That merely opens up possible avenues for study, not any kind of possible set of criteria to dx girls.
Katherine said,"there is a lot of research showing that NT girls have difficulty with the social aspect of school," and that brings up a crucial point: until there are studies working solely with girls, any study is either going to be tainted by comparisons with boys' issues, or by criteria developed for boys. Until society treats boys and girls exactly the same, and I doubt that's going to happen, the AS presentations of each gender should be considered separately in order to develop useful parameters for diagnosis. Otherwise, we end up with "AS has these symptoms, and in girls it may appear as..." It might as well be a separate entity, from the little I've read in the literature, and in meeting (and being AS myself) other AS females.
Thank you for your blog, and your reaction to this article. I hate using such clinical terms in talking about human beings, and you brought it back to the person.
And the little people in our lives.
I was glad to see this article, too, but it might not have been the best timing as Meg is starting middle school in 2 weeks! Her anxiety (and probably Mom's too!) is increasing. Megan (like Sweet M)is definitely loyal, and the preteen social maneuverings are totally confusing to her, as they were to me at her age! She also now is starting to identify herself as "autistic" but is tending to see that as only a negative. The small number of girls in sped classes with her doesn't help either. I think there is difficulty in realizing ASD girls' potential; the stereotypical AS boy may be gifted in math, computers, video games, science, etc and find his niche there. But the social expectations really interfere for girls.
It may be that some parents are overprotective with their daughters and prefer to keep them at home, whereas sons are more often encouraged to go out in the world and take care of themselves.
BTW, next year will be my 20th wedding anniversary. Don't believe the doomsayers...
I agree,generalizations are misguided. I have commented that my knowledge of many autistic girls and boys that we have met over the years, defy the descriptions in the NYT article. Every situation remains unique, autistic people are truly snowflakes, so remarkably different.
My son craves friendship, it is heartbreaking to see him rejected time after time. Autism interferes with his efforts. Nevetheless, it is the typical world of human beings that have made the difference.
x
resilientmom
New to your blog, love it. Have an 8 yr old GIRL with residual PDD NOS.
Still reeling over the article.
We were not represented there.
Drama Mama,
I join you in your comment that not all autistic individuals were represented in the article.
Young adults are plagued with social differences, even those that are not autistic.
The added complication of autism clouds analysis even further.
PDD NOS remains an enigma in the sea of autism controversy.
I often feel that my son is not represented in cookie-cutter articles.
resilientmom
Well, I have an autistic son and I also disagreed with the article. Many of the characteristics they're atributing to girls can be found in boys and vice-versa - autistic or not.
It's okay to investigate the gender differences, but at this point it doesn't look like they had a good sample of subjects to determine any definite results.
hi,
i stumbled upon on your blog while checking up what "splinter skill" meant.
As a student studying to be in the healthcare sector, when i see a child with ASD together with his/her parents, i often ponder what ran and runs through the parents' mind.
It was insightful and interesting to read your entires. Thank you very much for letting me understand things better from another viewpoint - a mother.
I think the article by NYT should go get a better title. Also, i believe that we should be aware of the possible problems people may face, but focus on their strengths and abilities to reach functional flexibility and enjoyment of life!
As another autism mom says "When you have met one person with Autism, you've met one person with Autism." I am constantly presented with the latest media reports on Autism from friends, family and acquaintances. Most of the time, I've already seen them. And most of the time they have so over simplified the message as to render their descriptions only vaguely familiar of the autistic people I know. But, like trying to explain the meltdown and your response to a concerned, bewildered or judgmental stranger at the grocery store, how much of the real story would the semi-interested bystander stick around to hear.
I love the format of your post. Some of the linked posts I'd read before, others I had missed. I feel like I know Sweet M just a little better now. And it captures a better example of the complexities and struggles and strengths that ASD together with a unique personality and life experience create.
oy. i couldn't agree with you more.
and i love your list.
and i await your 'more to come'
I have three girls with full blown autism - and they each present quite differently. I found the article glib and depressing. The Times is rarely a friend to autism in any way, shape or form.
(PS) HELLO!!
You should look into reading the book Asperger's and Girls by Tony Attwood. It has perspectives from alot of different professionals who understand the Autistic Spectrum. I found it was great, alot of it was like "Oh other people feel that way too, it's not just me!"
I am about to go read the original article, as I somehow missed it when a few months ago. I love your take on it though, and also share your concerns/opinions on such studies & their outcomes, especially as the mom of an autistic daughter.
Same kind of thing happens to girls who have ADHD, especially if it's the Inattentive type. (Like me.)
Definitely ridiculous!
I think that generally people on the spectrum develop at a slower pace than those who aren't. In my experience girls on the spectrum do form meaningful and generally permanent relationships, it just happens at a later age than for the majority of people who are not on the spectrum.
I've been with my husband for over 20 years and we are still very happy. I'm not officially diagnosed but as my Doctor says, my son's diagnosis explained a lot about me, if ever I feel the need for an official diagnosis there will be no problem getting it.
I cannot believe I found this place. My adolescent daughter is presenting behaviors that lead me to believe she is functioning somewhere on the autism spectrum. It would certainly explain past behaviors as well. She has really struggled with regulating her emotions since puberty began. she seems to have transformed into a child I must get to know all over again. Doctors we have seen keep thinking it's bipolar disorder, or shizoaffective disorder, extreme anxiety, or brain damage from being a preemie. I reluctantly put her on many different medications, and all made her behavior worse. I know kids with autism spectrum disorder can have mood disorders on top of that, but "the experts" don't seem to want to spend the time to figure out what's really going on with my child. All they seem to want to do is medicate her. I am not returning to the psychiatrist and am trying other avenues, but I feel like I'm walking out on a limb with nothing but a "gut feeling" about what my daughter needs. Anyway if anyone out there has any experience with how adolescence affects girls with autism spectrum disorder please post. Thanks to all.
writingmom
Hi, Mothersvox!
I just found this blog, and it looks interesting. My own perspective (and that from which most of the autism blogs I read are written) is that of an adult autistic, so seeing what a parent of an autistic child thinks is definitely illuminating.
I actually kind of liked the Times article (I wrote about it here)because it highlighted an aspect of these girls' experiences of being autistic that is usually assumed not to exist: their imagination.
Look at the diagnostic criteria for autism or Asperger syndrome, and you'll see that a poverty of imagination or pretend play is one of the requisites. Since my own childhood was very much colored by my hyperactive imagination, I was interested to see these other girls and women also being drawn to fiction and art and having rich inner lives.
(I still definitely agree with you, though, that with a sample size of seven, the most they can hope for in terms of generalization is to spur other researchers on to consider these questions in a bigger sample of people.)
Welcome writing mom and Lindsay! I've been blog silent for a while, but am coming back slowly, and wanted to welcome you to Autism's Edges. It's a strange world, but what a wild and wonderful ride it can be!
rI am a 39 year old with Aspberger's and I have hit another crossroads in my life just as all these revelatory articles are starting to surface. I think if my parents and I knew then what we knew now, it would have affected my choices and behaviors differently. I believe that a lot of special ed classrooms, because of the small female presence, do a great disservice to high functioning girls. Without exposure to "regular" girls, they do not develop a lot of the social skills they need to mix with the outside. It also makes them vulnerable to making friends with seemingly "cool" females (those who seem popular and able to make friends quickly and effortlessly) who ultimately take advantage of and abuse them.
I have in many ways had more problematic relationships with women/girls than males--from my own mother to bosses down to business colleagues and co-workers to "friends." I have always gotten along with teachers, and my closest friends are teachers. That said, though I have gotten better at filtering out the baddies, I have just discarded a toxic friend who seemed like a great writing partner and then proceeded me to upstage me with common peers in business situations, dominate conversations and try to "steal" jobs and contacts from me behind my back after I did all these favors for her (especially as she was always on the brink of getting evicted every other week). Other friends like her behaved similarly, and when I put my foot down, they dumped me or I had to remove them from my life.
I think if we are going to properly study the minds of women like us/me, we need to also study "regular" women so we are not operating at such a disadvantage. As Katherine said, little girls can be cruel--this gets worse as they grow into women and the pecking order gets more sophisticated.
Also, I think the proliferation of these reports--that men with the affliction grow up to be rich and married and women grow up to be poor, abandoned and rejected by society needs to be rethought. In our society, women are at a disadvantage already, and the experts need to be more responsible about how they conduct the study and getting a larger sample.
In my case, growing up, teachers and even my parents did everything in their power to discourage me and my dreams (including keeping me out of things like The National Honors Society). They never recognized me because they were afraid about how people would react to a "special" needs person in the spotlight. I became successful during my college years, had a loyal boyfriend throughout the entire time (I got straight As and worked as a music journalist, though women I befriended turned on me and tried to discredit me). When I got my Master's in 1992, I took the few bad jobs that were out there, and got bullied and emotionally raped by my co-workers in Chicago. I moved to California and had more success, and even a couple of long term relationships...but I found that situations created by the corporate environment and the men I was with (who were trying to change me constantly) were not healthy.
Since 2001, I have worked as a freelance writer with great success, and my work is published around the world. I once hoped a loving husband or mate would love me, support me and take me to great places. However, through my writing and editing work, I have been able to do all that for myself...and I am darn proud of that. I have been told by a lot of well meaning people that desirable men don't marry girls like me, and that I should perhaps settle for "a fixer upper." However, if I listened to them or settled for less, I wouldn't have lived my life as well as I have.
I even wrote a novel purely for fun--semi-autobiographical--with a positive role model with Asperger's....girls need to focus on the positive and people they can relate to, so they can say, "If she can do it, I can do it, too."
Now that the economy has slowed down, I would like to move into an educational field where I can be a part of the solution instead of the problem that represses people like me. It's good that we've got a dialogue going, but more needs to be done, and with more care and attention. If not, it may hurt the people it is intended to help.
I know this is long winded, but thanks for reading this.
Elyseg, Thanks so much for your story of dealing with Asperger's as a woman. I think we mom's who are parenting girls on the spectrum need to learn from your experiences so we can help pave the way(s) for our girls. Many, many thanks.
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