If you think of ASD only in the terms a weird loner with no friends, no values and no cares, or of the stereotypical portrayals like “Rain Man” or “Arnie Grape” (not that it sometimes isn’t very similar to those particular portrayals) then please
—-> erase <—-
everything you think you know about Autism, PDD-NOS, and Asperger’s.
One of the biggest
issues dangers with AS being so invisible in women is that is the high possibility of the ‘undiagnosed girl’ becoming depressed, and even (often) misdiagnosed with one or multiple of the following: ADHD and General Anxiety Disorder or more potentially damaging if given the wrong medications – schizophrenia, bipolar disorder, multiple personality disorder, BPD…and the list goes on.
The actuality of it is that the autism spectrum is vast, spanning from the general population’s idea of what they think all autism looks like, all the way to people who are very much like Bean.
ASD isn’t based on a certain template for who you are or who you’ll be. To every expert on or any individual with Asperger’s/ASD they can easily see it in Bean. If I didn’t know so much about the spectrum of Autism and Asperger’s and the very prominent and distinguishing differences between girls on the spectrum versus boys with ASD (after MUCH research) I would never have considered Bean a candidate for this condition.
In the case of girls with AS, unfortunately too little research has been done on women with AS and how they present the disorder (I hate the word disorder) to know for sure how exactly women present this condition differently than their male counterparts. The list of criteria available in the DSM IV for Asperger’s is based on a male AS type only. Therefore most girls and women fall just short of qualifications to be diagnosed as AS. Most are considered “borderline Asperger’s” until or unless they are seen by an expert who can properly diagnose them after a series of visits. I’m willing to bet that most of these girls are then diagnosed with “High Functioning Asperger’s”.
You know, it’s like “you got it – but it ain’t bad”.
But yes, “girls don’t present the same way as boys do”.
This is true, and it is disadvantageous to young women and girls everywhere with ASD that this is the case. Not only because the truth is that beyond the differences between male and females with ASD there isn’t one template that encapsulates ASD in all the individuals who have it. The DSM-V offers a very different perspective and teachings to its young psycology students. It discreetly but obviously disagrees that the ASD spectrum is vast, and as mentioned, it sets a male template as the standard for the criteria to be diagnosed with ASD. A million times it can be said “girls present autism differently than their male counterparts” and yet people don’t get it. And they don’t get it because the psycology “industry” has told them that ASD can only be one way. “But she’s so social!”, “but she is so well behaved!”, “but she’s so chatty!”… On and on they attempt to disprove it, to me? To themselves? They question it, they doubt it. And that’s hard. It is. It’s hard because we finally know what it is that we’ve been dealing with all this time, we finally are starting to “get her”- and they question her, and they question us. And what happens next, in our case and the cases of many other girls on the spectrum, is that we begin to question ourselves and to doubt, and to become confused and out of place.
When Bean was originally diagnosed at age 5 with *just* ADHD I had no clue about Asperger’s. I knew about Classic Autism, having babysat two boys with classic Autism, but Asperger’s was just a term I had heard used on “America’s Next Top Model” one time and the show certainly didn’t go into detail about the condition.
In fact, the only reason we had her seen again by some psychiatrists was to get better care and resources for what we thought was solely a diagnosis of ADHD. The process in which she was diagnosed though was much more explicit than mine with Dr JJJ. Bean was observed, interviewed multiple times. We were interviewed multiple times. Then, after Bean was diagnosed with Asperger’s she had ADOS, psychological and cognitive testing done to confirm the diagnosis. It was an extremely thorough process and, maybe because we had never gone in there thinking anything about Asperger’s, it was honest. From all perspectives.
Of some of the symptoms that my daughter portrays that qualifies her for the criteria of ASD whether she does have “high Functioning AS” or not > “easy”, “better” or “mild” wouldn’t be words I would use to describe what she goes through daily.
Nor should we have to.
At the very least more research should be done specifically with girls and women who have or present Asperger’s. As well it should be studied more often and more thoroughly. Especially as they are now changing the criteria of ASD’s in the new DSM V and removing Asperger’s from the manual entirely (with some confusion as to whether those with a previous diagnosis get to keep their diagnosis or not).
In a great article on Tony Attwood’s site, written by Liane Holliday Willey (author of Pretending To Be Normal), she explains some of the basic differences between girls with AS and boys with AS. Girls are more socially inclined compared to boys with AS. They also have a tendency to mimic other people in order to better fit in. They have less of a fixation on specific subjects than they do on reading fiction and they are often creative and very good at pretend play. They also have an easier time with eye contact, or at least appearing to give eye contact (in my daughter’s case she looks down and slightly to the left which makes it hard to tell she isn’t looking at you. Or she looks straight at your nose – which fools any one).
In the book “Girls Growing Up On The Autism Spectrum” a section on the differences between girls on the spectrum and boys on the spectrum read (I’m paraphrasing here): “We shouldn’t be comparing girls with ASD’s with boys of the same diagnosis, what we should be doing is comparing these girls with neurotypical girls.”
I think that not only tells a lot about how different the condition presents in girls versus boys, but also how potentially harmful it is to remove the Asperger disorder from the DSM V and have a whole new criteria created to encompass an umbrella diagnosis of ASD. Young girls present the condition so differently from their male counterparts that they are often overlooked as just “quirky” or “over emotional” characters. That is until they hit adolescence, when the shift into a social World occurs and it’s eat or be eaten. Where the pressures of social interactions can cause these girls to be ostracized and/or depressed. When sometimes (or often) the way to fit in is through easy social interactions, like hanging with the “wrong crowd” who seem easy to mimic and always at the ready to include another pawn for their dirty work. When doing drugs or having sex seem to be the easiest ways to appear socially involved. Easier than the alternative.
With all this in mind, what worries me about the changes to the DSM V in regards to AS is that they are already leaving out a large percentage of people with the disorder (girls) because of their lack of knowledge and research on the difference between the genders in this capacity. Where will the girls on the Autism Spectrum be when the criteria becomes even more specific, and still largely (if not all) based on a male autistic type?
Food for thought.
Most importantly, in the aftermath of the tragedy at the Newtown elementary school in Connecticut where the media seized in on and exasperated the notion that Adam Lanza’s (possible) ASD was perhaps the cause of his violent nature and lack of empathy, it’s so vital to remember, to know, that Asperger’s is not a violent condition. It isn’t a condition that disables empathy. It is a condition that affects individuals all over the World, and those individuals are just that – individuals. Living different lives that influence their natures and their capabilities. I implore you to check out the facebook page Autism Shines for a better grasp of what the ASD community looks like.
Yes, the actuality is that the autism spectrum is vast, spanning from the general population’s idea of what they think all autism looks like, all the way to people who are very much like Bean.