One of my favorite subjects! It will be challenging to keep this under 1500 words, which Melissa has informed me is apparently the maximum number readers will tolerate. Yet here I am, wasting valuable words!
In my experience, girls with Autism Spectrum Disorders (ASD) are missed a bunch by diagnosticians. (A bunch is a highly technical number!) Autism is by definition a male-centered construct. Because males have a tendency to show social and attentional challenges more overtly, they are generally easier to pick out during assessments.
Girls, on the other hand, defy our (restricted) expectations of what constitutes ASD:
- They are often quite imaginative and engage in such play more frequently than their peers. I often have the passing thought that fantasy writers are probably over-represented by females with ASD.
- They are often very capable artists. Art is associated with emotions and therefore falls outside of what we think they are capable of. Plus, by necessity art is often quite social (“Look at this!”), which pulls others into their social orbit.
- They make eye contact. It might seem a tad different – maybe they hold your gaze longer than would be expected – but for the most part, the differences are not strong enough to catch the eye of a pediatrician, educator or parent.
- They are much less likely to show restricted interests. Or at least the interests they have sometimes seem more socially viable – animals, drawing, anime, movies – and thus fall outside of what we often see in boys (often intense, unyielding video game obsessions). These interests probably appear more like “passions” in that they don’t interfere with social interactions; rather, they appear to be fascinating aspects of their personalities.
- They make friends. They can be super friendly and chatty, and often exhibit a strong desire to approach others and engage socially.
So in many ways the above traits paint a picture of a quirky, imaginative, charming girl. How could this possibly be considered a disorder? (Note: I really, really don’t like that word, especially in reference to the girls with whom I work.) Well, despite all of the above positive characteristics, girls with ASD often struggle with the core challenge – one that defines ASD (in my humble opinion): Social emotional reciprocity.
Well, what the heck is social emotional reciprocity? It’s the ability of a person to understand fluid social cues and social environments intuitively and respond accordingly. In other words, social intuition is blunted, which makes complex social interactions (and frankly, even simple ones) challenging. A vast majority of what we consider language is actually nonverbal.
This means that for the girls I work with, their lives are many times more complex and mentally exhausting. If you don’t intuitively understand how to do something, it means that you must rely on logical and causal mechanisms to comprehend interactions and situations that others intuit subconsciously. This is effortful and laborious. Many of the gals I see in my practice complain that they struggle with understanding how engage with more than one person at a time. Parties are often quite stressful for them. They complain frequently of social exhaustion.
What are some challenges that I see in clinical practice?
- While they seek out peers for friendships, they often struggle at maintaining and nourishing friendships. Keeping friends is actually quite complicated, and logic does not always adequately replace intuitive understanding.
- Emotional dysregulation is a common and often overwhelming complaint. Their brains are more systematic and rigid, and the fluid give and take of social situations often defies logic and sequential steps. Emotional dysregulation frequently derails relationships or opportunities to succeed at activities, thus having a broad impact on their lives.
- Anxiety. Hoo boy. The girls I work with often don’t do a great job of perceiving their internal state, but they show a lot of behaviors that tell us they are anxious (e.g., picking at skin, rocking, sleep challenges, avoidance, biting nails). Research suggests that 80% of persons with ASD experience clinical levels of anxiety. My clinical experience suggests it’s pretty much 100%.
- They have a tendency to “talk over” others. While they are often charming and creative, they frequently use speech to inform, rather than build relationships. They blow through social cues that others might recognize as boredom in order to tell us about their favorite subject.
- Black and white thinking is prominent. We hear the words “never” and “always” a lot, as in, “I never get to go to the park!” They are often stubborn. Very, very stubborn.
- Sensory challenges often interfere with daily activities. They often struggle with textures, tastes, loud sounds, and other quirky sensations in a way that cause minor and more substantial difficulties.
The above difficulties might exist in a low hum that don’t really interfere with life. If so, there might not be any urgency in formal diagnosis. However, some girls benefit from clarity. As do their parents. I work with a number of parents who describe their experience parenting as a gradual erosion of confidence. They can’t quite put their finger on when they felt incompetent, but they often do feel as if they can’t match their daughter’s needs.
Statistics suggest that, while the ratio of girls to boys with impacted ASD is roughly 1:4, in the case of persons with well-developed cognition and speech, the ratio is closer to 1:10. Yikes. Why is this? Frankly, I think that the measures used to capture ASD are often inadequate.
The “gold standard” assessment for ASD is the ADOS-2. The ADOS is a series of activities designed to place a child in situations that tease out behaviors that might reflect ASD. Here’s the problem. Most of the girls I work with know how to converse, make typical eye contact and understand how to engage in normative play (even if they don’t do it). They’ve learned to do this because they pay attention and they’re often very, very clever.
Something to consider about the ADOS when testing girls with ASD. The fourth module is the only one that would be remotely adequate to gauge functioning. Would you like to know how many girls they used to validate module 4 of the ADOS? Two. You are not reading that wrong. Two girls. What’s more troubling to me is that the average IQ of the two girls used was 100. Right at the mean. The girls I see and assess fall over a full standard deviation and a half above this. They’re often gifted.
So what do I do? I rely heavily on parent and teacher report. I carefully consider history. Often the kids I see show challenging behaviors in infancy – troubles feeding, sleeping – they’re often colicky. Preschool is often a rough slog. Lots of confusion as to why such a sweet kid might wander off during circle time, or smack another kid over a toy. Then a long stream of random, hard to classify challenges with socialization. Birthday parties gone awry, play dates that fall apart after 30 minutes, inconsistent reactions to relatives.
So, if I don’ rely heavily on the ADOS for diagnosis, what do I use? I mean, I need data, right? I rely on the Autism Diagnostic Interview – Revised (ADI-R), a terrific structured interview that covers a broad range of challenges seen in persons with ASD. It not only provides a score that tells us where someone might be at on the spectrum, but it also provides parents with understanding of what it is that we’re looking for. I also use the Behavior Assessment for Children – Third Edition (BASC-3), that provides a behavioral profile of children. Kids with ASD often exhibit high levels of anxiety, inattention, withdrawal, atypicality, and diminished adaptability (essentially emotional flexibility) and social skills.
So, after considering all of the above, I have a diagnosis – how is that useful? I can think of two. One, I think that girls with ASD often view themselves as being defective. With a diagnosis, they can understand their challenges as an external thing – ASD. It’s not them; it’s this interesting neurological construct.
Two, it can provide clarity for supports. One way to consider persons with ASD, whether male or female, is that their left hemisphere is dominant, to the point that right hemispheric functioning is diminished. And no, this doesn’t mean that you’re not artistic, as had been reported back in the 70’s. It merely means that one’s capacity to comprehend life intuitively is diminished. And therefore requires support. Or clarity, if you like.
From a treatment standpoint, this is precisely how I envision supports for persons with ASD. Whatever intuitive latticework that binds neurotypicals together (kind of like the Force!) lies outside their grasp. Therefore, it is our job to clarify these nonverbal, intuitive demands. Someone with a verbal IQ in the 95th percentile might not understand that it’s not okay to wander off from school. Or how to share. Or more frustratingly, why they have to share.
It’s precisely these differences that make them such a challenging and wonderful group to work with. I hope this has been helpful. I’d keep blabbing, but I’ve just passed my word count, so you’re probably not reading this far!
Dr. Lionel Enns Phd, BCBA-D