We posted a piece last week from Apoorva Mandavilli on the subject:
Because autism is at least three times as common in boys as in girls, scientists routinely include only boys in their research. The result is that we know shockingly little about whether and how autism might be different in girls and boys. What we do know is grim: On average, girls who have mild symptoms of autism are diagnosed two years later than boys. There’s some debate about why this might be so. From the start, girls’ restricted interests seem more socially acceptable—dolls or books, perhaps, rather than train schedules—and may go unnoticed. But the fact that diagnostic tests are based on observations of boys with autism almost certainly contributes to errors and delays.
A male reader “who likely has Asperger’s” is put off by the piece:
It seems sexist in that it tries to paint women with autism as worse off than men with autism:
Social isolation, bullying and depression are not exclusive to girls with autism—boys experience them too. But for older girls with autism, the intricacies of their social world add layers of complexity.
This article reads like: “Men are 9x more likely to get autism, and have worse forms of autism, but women are the real victims of autism since theirs is mild enough to go undiagnosed.” Women do not have to deal with things like, for example, having their sexuality questioned because they like books.
Another reader engages that one:
The article is not necessarily trying to paint women as worse off than men; women just need different forms of support, perhaps. I’m saying this as someone who’s married to a man with Asperger’s and who has a five-year-old daughter who’s mildly autistic.
Having your sexuality questioned because you like books is more of a cultural thing than anything else. My husband never had this experience (trust me, he likes books), but he struggled with other social issues, particularly in school. Maybe what’s needed is some sort of guidance for autistic teens/young adults that would help them navigate sexual relationships and complicated social dynamics. (Because that’s really what you’re talking about when someone questions your sexuality because of reading books. You might have benefited from some advice on how to shut them down/get them to back off.)
My husband's diagnosis came a year before my daughter’s, so I knew what we might be dealing with when she first started having obvious language difficulties. If I hadn’t been informed, I might not have asked the right questions.
She’s very social; she just doesn’t know how to get a positive response from her peers. And living with her isn't that difficult. (It’s kind of like living with Ed from Cowboy Be Bop [seen in the embedded video above]. In fact, her current mode of speech is almost exactly like Ed’s.) So far, the autism-related interventions she’s undergone have helped her immensely. I just worry about her future.
To the article’s point: I struggle to get appropriate services for my daughter because of this lack of understanding. She isn’t disruptive in class, is fairly outgoing, and is extremely orderly compared to other kindergartners. She’s meeting her reading and mathematics milestones without much difficulty. In other words, she’s basically an ideal student (or so says her teacher).
The flip side of that is she comes home crying because she “doesn't have any friends” or “a girl hit me.” See, her spoken language capabilities and social awareness are compromised. When asked who hit her, I get an unintelligible sentence about a girl and a boy ... no names. When I met with her teacher and the IEP coordination team, they didn’t see a point in doing anything to help her with the autism because she’s meeting scholastic standards.
But I’m wondering for how long? Once it’s not a matter of pattern recognition and the work requires some knowledge of social context, she’ll fall further and further behind, particularly in courses like social studies, etc. If she were more disruptive to the classroom peace, like some of the little boys I’ve seen, maybe I would be taken more seriously when I talk to her teachers.
If you have any personal experiences along these lines, drop me an email. Update from Jim Elliott, one of our best reader contributors:
Autism testing actually falls under my professional context, and I’d say that with the change in diagnostic criteria under the DSM-V to autism spectrum disorder, roughly half to three-quarters of our eligibility work is now under requests for service under autism. There are two “gold standard” tests that clinical psychologists are trained to use: the various modules of the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview, Revised (ADI-R).
The ADOS is what clinical psychologists call a “sensitive” tool—that is, if you demonstrate even the minutest of autism-like symptoms, it is likely to capture them. However, as a highly-sensitive tool, it suffers from being not terribly “specific”—that is, it will catch the smallest of symptoms, but it’s really quite terrible at differential diagnosis. That is to say, just because you score highly on the ADOS, it really is impossible—for a good clinician (and many who are diagnosing autism today are not)—to just use an ADOS to determine if a child has autism. The ADI-R is a parental interview that manages to be both fairly sensitive and decently specific, so using it in conjunction with an ADOS actually gives you a pretty good picture.
Both of these tests are highly reliable across gender, ethnicity, and age. Another good test for determining if a diagnosis of autism should be explored further (e.g. with the ADOS and ADI-R) is the Gilliam Autism Rating Scale (GARS).
Of course, this brings us to other problems with autism diagnosis. Two of the principal sources of autism diagnoses are school psychologists (through the individual education plan assessment process) and pediatricians. The educational diagnosis of autism is actually quite distinct from DSM-V, so much so that they generally use different tests. Medical doctors are not required to have any education at all in how to deliver standardized psychological testing like the ADOS or ADI-R. Standardized tests require certification and training in how to deliver and score them, usually costing the psychologist (if in private practice) or their employer hundreds or even thousands of dollars to obtain and maintain certification. As a result, such testing is expensive.
Even then, clinical judgment—which is where the controversy comes in—is crucial. I could go on for hours about the mess that is the transition to DSM-V and how utterly ridiculous some of its new criteria is and has been applied. However, you can’t escape the fact that collateral information, like good developmental histories, good clinical interviewing skills, and observation in multiple settings on multiple occasions remains crucial to a good, valid diagnosis of autism.
I can say, unequivocally as a professional, that this is not happening for families that are not prepared to spend several thousand dollars on an assessment unless they can qualify for a state-sponsored assessment such as through my employer or if their insurer, such as Kaiser Permanente, covers them under state law. Even then, you have problems—I call it the “hammer and nail effect”—where if all you are looking for is autism, then that’s all you find.
I think there are a lot of reasons for this, including a pathologization of typical young boy behavior; clinical “forgetting” of the fact that childhood development is itself a “spectrum,” not a truly defined progression; and the fact that autism is the “still-potentially-curable,” socially-acceptable diagnosis for your child to have that has all the hot service dollars attached to it (there's a reason why children's likelihood of diagnosis increases if they are in an urban area and the better-off the family is financially).
Aside: If any of your correspondents mention that they need help getting services in California, I’m happy to proffer some professional advice.
You can get in touch with Jim through the hello@ address.