Friday, February 22, 2019

Julia Bascom's Social Justice War against reported autism gender ratios

As people who've kept up with my most recent blog posts know, lately I've been writing about reported male to female ratios of autism and have given my somewhat limited take (due to lack of scientific training) on some of the reported studies on the matter.  Those interested can check out a recent article I wrote on the subject published by Autism Parenting Magazine.  Reported ratios were usually an average of four males for every female with some newer research suggesting the actual ratio might be closer to 3:1.  In milder cases, the reported ratios have averaged about 6:1 or higher.  In the more severe cases, reported ratios averaged about 2:1.

One explanation given for the discrepancies in ratios is that autism has been underestimated in higher-functioning females due to discrimination, the fact that autism presents differently in females than in males, social training girls receive as children that boys don't, and an interesting phenomenon called social camouflage, where women on the milder end of the spectrum are either more adept at disguising their autism than their male counterparts or more motivated for some reason that eludes me, or a combination of both.  Before Autism Parenting published my article, I wrote a blog post about the subject.

This explanation is given by multiple neurodiversity proponents who are often extremely high-functioning females.

Among the largest body of scientific evidence showing boys are more susceptible to autism than girls is something called the female protective effect.  This means that in order to become autistic, a girl must take a wider genetic hit to become autistic.  Also differences in brain structure may account for a protective effect.  Also mothers carry genes that make someone susceptible to autism and not become autistic themselves due to the protective effect.  However, they often pass these genes onto their sons who become autistic.  I reviewed some of the science behind this in the above-linked articles the interested reader can check out, so I won't do it again here.  The evidence of a female protective effect has been widely replicated in a variety of studies and there is no question it exists.

One limitation of this science may be that it does not translate into what a precise ratio of autistic males to females would be.  Theoretically the actual M:F ratio could be 2:1 or possibly lower even with a female protective effect.  So the question is still open whether or not the 6:1 ratio in milder cases represents an underestimation of females.

One would think that female neurodiversity proponents who are so certain that social camouflage and other phenomena that keep women from getting a diagnosis would want to investigate the science behind it, write blog posts and essays explaining the protective effect and other scientific evidence that might dispute, but until recently (which I'll get to in a bit) there did not seem to be any interest in discussing the scientific evidence or lack of it.  Instead, most female neurodiversity proponents state that autism is underestimated in women as fact.  Apparently some of them don't even care about science or data.

The most prominent of these is Autistic Self Advocacy Network President Julia Bascom.  She's written a rather interesting take on the subject.

Ms Bascom states:

Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels

It would appear she's discounting the possibility that it's not inequitable, but rather there really are more boys who present with diagnostic symptoms of autism than girls and some of the other labels may have actually been more accurate in the first place.

According to Bascom, racism plays a role in this and fosters an argument for social justice:

We still see significant underdiagnosis in communities of color, and we still have yet to truthfully confront the role racism plays in that.

Ms Bascom goes on to state:

and the end result is that all across the globe, autistic women and girls are missed, overlooked, and ignored.

She neglects to provide any evidence for this hypothesis.  Science aside, what of all the high profile autistic women such as Temple Grandin, Donna Williams, Carly Fleischman, and most recently newly minted lawyer Haley Moss, and all the media exposure they've received?  if even a 3:1 M:F ratio is true, female spectrumites, if anything, have received disproportionately high amounts of attention.

Bascom goes even further in her apparent social justice war against reported gender ratios:

Instead of resting easily on statistics which claim only one autistic woman exists for every 2, 4, or 9 autistic men, we should be working relentlessly to close those gaps and make sure that everyone who needs a diagnosis is connected to equitable support. Then we can have a count, I suppose, if we still think we need one. My concern here isn’t really about data. It’s about justice.

So here we have a tacit admission on Bascom's part that scientific data does not matter.  Girls are often undiagnosed, so we must start a social justice war so these individuals can get the diagnosis they covet.

One possible flaw in Bascom's argument can be summed up in what she concedes is a frequent characteristic of many diagnosed females:

One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. 

Even though the DSM specifies that difficulties in reciprocal social relationships are part of the diagnostic criteria, women high functioning enough to have significant others and have children who are autistic, whom they've brought for assessment are among the most commonly diagnosed females on the spectrum.  Why they would have been diagnosed with other labels, why their parents would not have brought them to the attention of a clinician in the first place are points to ponder.

Clearly, Bascom is more interested in social justice, having women "doctor shop" for a diagnosis, and possibly forcing clinicians to diagnose females who may not be on the spectrum than in actual data,  It does not matter what the science says  It does not matter what the established criteria of an autism dx is.  It must be changed for women in order to promote social justice for women who need a diagnosis.  Why would these women who can care for children need a diagnosis in the first place?  Could it be this is the only way they can legitimize their crusade in favor of neurodiversity?

Only recently have Bascom and other female NDs shown a remote interest in establishing a scientific basis for their theories.  Bascom was one of the co-authors of researcher Allison Ratto who did a study involving male and female autistics and a possible camouflage effect.  They also appeared together on a recent Cspan show discussing these issues.

On watching this video, I was intrigued when I got to around the 22 minute 48 second part, where Julia Bascom is asked when she was diagnosed as autistic and was quite reticent, responding, "I don't talk about my life history on TV."  This makes me wonder about Bascom's diagnosis.  Was she self-diagnosed?  Did she go to multiple clinicians before she got a diagnosis?  Apparently, according to her own social justice theories, she would certainly do this to get an autism diagnosis.  Did she bully some clinicians into diagnosing her somehow?  Based on what she's written before, these are all interesting points to ponder.

A social justice crusade may result in more females being diagnosed under questionable circumstances, but it won't change the science of the female protective effect and other evidence that an at least 3:1 ratio of autistic males to females may be real.  I feel that if neurodiversity proponents are going to allege that autism is definitely overlooked and underestimated in females they should provide scientific evidence of that fact rather than starting a social justice war to promote their position. 

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