I’ve no doubt that a lot of females probably go undiagnosed, or are diagnosed later in life. But I also think from what I’ve read that in general it is legitimately more common in males. I wonder why they’ve decided to put Autism under an umbrella, catch-all diagnosis, maybe it makes it easier for children to get services and treatments. Because everything I’ve read say there are different causes of autism, not one general cause, so it makes me wonder if it is appropriate to have a singular diagnosis to describe them. Maybe “low-functioning” and “high-functioning” are really two different disorders caused by two different things or a difference genetic penetrance or something.
Two different issues that are being discussed here can easily get conflated.
-
Does gender bias lead to girls with the same presentation, for example, the same lack of early shared attention, lack of prototypical pointing by 15 months, lack of pretend play by 18 months, or the same atypical socialization, the same atypical language development, the same degree of sensory defensiveness/seeking, the same narrow focus of interests, so on, being diagnosed less frequently than boys get diagnosed?
-
Do girls with Autism and spectrum disorders (however we are defining it) present differently, with less obvious social and/or language dysfunction for example? And connected to that thought, if true then should a more liberal or at least modified diagnostic standard be used for girls than for boys?
Both are possible. But each would present different responses in order to correct. If true the first would require clinicians (from general pediatricians like myself to various specialists) be aware of their implicit biases and use standardized instruments more frequently and more consistently. The second gets more difficult as it gets at defining what does and does not fall under the umbrella. It can create a circumstance in which a boy with the same presentation as a girl is not labelled, does not meet the male label definition, while a girl with that presentation does get the label. Not sure that is a better or more desired outcome. Yet if the development of autistic characteristics does commonly follow different trajectories in girls and boys, achieving early diagnosis globally would require the use if different standards …
Some other posts are discussing the challenges of being on the spectrum and functioning in neurotypical settings. A question for the men and women with ASD here: do you believe there are gender biased expectations and accepted standards of behavior? It seems reasonable to me to suspect that a man with ASD will have his characteristics accepted by others around him more easily than a woman with the exact same characteristics would because of our implicit assumptions regarding gender associated characteristics. Do you find that to be true or not?
What’s the difference between saying that boys and girls have the same condition, but that it presents differently, and saying that boys and girls have different conditions? We can’t relate them based on causes, because we don’t know what the causes are. We can’t relate them based on what treatments work, because different treatments work for every patient.
As an aside, I’ve never been a fan of the concept of “the autism spectrum”. First of all, if it exists, then everyone is on it, just like X-rays and gamma rays are part of the same spectrum as radio waves. And second, it’s not at all clear that it is a spectrum: There are hints that what we lump together as “autism” is actually a set of completely unrelated conditions which all just lead to similar symptoms.
The biggest difference is getting services and getting the services that have good odds of potentially being helpful (e.g. ABA) considered earlier.
As for “spectrum” … maybe this analogy will help you understand -
Imagine a world in which we all had no choice but to live in caves with low ceilings of varying heights and with narrow passageways. Being large and tall, whatever the genetic cause, was a disadvantage to functioning easily and well. Everyone has some degree of height but the more one gets over some bit more than the mean the more difficulty with function one would have. There is not however one specific height beyond which dysfunction occurs and below which it does not. Still being tall in that world would be a disorder and one could consider a tallness spectrum disorder. Of course the analogy would only hold if in that world there was an advantage to identifying those who would end up tall enough to have problems early with some potential interventions that, if administered early, could prevent being tall enough to have dysfunction, or alternative train early on how to adapt to living as a tall person in that world without always bumping your head and the skills of how to squeeze through spaces that are hard for you to fit.
Make sense?
As far as everyone being on the spectrum to some degree or another, let me share the metaphor for it that works best for me.
Autism is the ocean and we’re all on the beach. We’re born standing in one particular spot, and we can’t move away from it. Some of us are so far up the beach that even the biggest wave at the highest tide won’t do any more than get our toes wet. Most of us, at some time in our lives, will get a little bit wetter than that. Some of us are born in over our heads and even at the lowest tide we can’t get enough air. Some of us who are about knee deep–which is where I put myself–can stand just fine most of the time, but every so often a really monster wave will destabilize us.
I think it’s a good analogy for a *lot *of neurodivergence, including depression and anxiety. It allows for the possibility that what’s lumped together as ASD right now is actually lots of different conditions.
As DSeid said, getting services to the people who are really wet is the goal, not to make a false dichotomy between wet people and dry people. Once we have dispatched help to the drowning ones, providing lifesavers or just towels to the rest according to their need would be a pleasant, humanist thing to do.
Any analogy that uses only one variable, like a spectrum, is inadequate. Two related variables, such as tallness and height of ceiling, or distance from the sea and variable waves, is a little better, but still too simple to reflect the reality.
I think there are a number of different factors, connected in complex ways that we don’t understand, and probably never will. A yes-or-no diagnosis may be necessary for practical medical purposes, but it doesn’t reflect the real world.
It’s like saying that a person who is good at drawing or painting is ‘on the artistic spectrum’. But what is art? What do we mean by good? There are many different kinds of artistic skills, and many different kinds of art. How do you compare a landscape painter with a sculptor or a performance artist? You can’t do it with a single variable along a spectrum. Or with two, or three, or four variables. And the values of the variables would be subjective anyway, and changing with time.
Yet… we still have some intuitive idea about whether a person is ‘artistic’ or not. If a person had to be formally declared to have artistic skills before being allowed to attend art school, we could make up some criteria and give a yes-or-no answer. But it wouldn’t reflect the far more complex reality.
I took that ASQ and scored 29, which labeled me as possible Asperger’s, but I really don’t think I’m on the spectrum. But I’m certain that were I ever to pursue a formal diagnosis, I would easily get a label of Social Anxiety Disorder, and that is what the scale is picking up on. I’ve done the Liebowitz Social Anxiety Scale a few times over the years and score in the severe range every time. The ASQ touches on some of the same behaviors but doesn’t touch on why.
At first I thought “yeah, it’s the same problem as with AD(H)D”. Then I realized “heck, it’s a problem with medicine in general, there’s starting to be pushback against that from all kinds of medical professionals”.
Men are the default, women are treated like some sort of variant state; boys’ unusual behaviors are more visible but also when detected get more attention than girls’. A girl who sits by herself with a book is quiet, a boy who sits by himself with a book is worrisome; the teacher does not hop over to the girl, but does check on the boy. We do have inborn differences, but even our study of those is biased by centuries of sexist culture(s).
These kids don’t have prejudices based on their sex, but their caretakers do; we call those prejudices gender. And those prejudices affect, among other things, which medical diagnoses and treatment those children will get throughout their lives.
That’s a lovely analogy.