According to Dr. Catherine Lord, the DSM-5 committee responded to concerns that the new diagnostic standards adopted last Saturday would strip many people of an autism diagnosis they need for services by clarifying that people who currently have diagnoses should not lose them because of the changes:

The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in.”

Dr. Catherine Lord was written a defense of the new DSM-5 criteria for autism diagnosis that is striking for her complete lack of interest in the feelings and opinions of autistic people.

She mentions the emotions of families and caregivers many times:

As a clinician who has seen families and people with ASD almost every day of my life for more than 30 years, and as a member of the Neurodevelopmental Disorders Work Group for the upcoming revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), it has been heartbreaking to hear how frightened families were by the proposed changes.

And:

Families arrive at our center afraid that we will not listen to them or "see" their child as he or she is, yet at the same time hoping that we won't see or hear evidence of autism. One of the problems with the DSM-IV system was that families were often given PDD-NOS diagnoses because clinicians did not want to upset caregivers. Parents were relieved by the term PDD-NOS, which avoided the stigma of "autism," and consequently they sometimes did not pursue appropriate treatments, only to discover later that their child had had autism all along.

And:

It is not surprising that parents might be frightened to learn that the name of their child's diagnosis will be changed.

And:

The fear of losing services for children is also understandable because many parents have had to fight so hard to get this help. Health care and insurance systems often exclude autism from reasonable coverage, and families with a child or adult with ASD live in a complicated world of conflicting information about what treatments are effective.

And:

Providing more accurate data about these changes may seem like a small gain, but I hope our study will help us take a larger step in improving diagnosis and decreasing the fears of families who already have to fight for what their children need, often across a lifetime.

 

But no mention-- nothing-- about the fears expressed by autistic people.  This is in keeping with the fact that Dr. Lord and her colleague have been contentsimply not to study how the new criteria will affect adults.  It is in keeping with the attitude of total indifference shown by committee members who met with GRASP.

The feelings of autistic people matter.  How these criteria affect adults matter.  We are too often portrayed as pets or objects who do not have a legitimate interest in what happens to us.

If Dr. Lord cannot grasp these things, she is in the wrong line of work.

And, no, her defense does not address any of the concerns  Emily Willingham expressed here.

Another chapter began in the continuing drama over proposed changes to the way autism is diagnosed.  A study published yesterday by The American Journal of Psychiatry indicates that 90% of the people who the current standards identify as autistic would retain that diagnosis with the new DSM-5 criteria.

I was much less worried than many others by previous research that suggested only 45% of the people currently diagnosed would still be labeled autistic by doctors using the new standards, in part because the methodology of that study was so poor and in part because I think doctors will tend to use the standards to help their patients and their families, not to hurt them. 

However, comments made by the people who did this new study have me worried in a different way:

“What I would say to families worried about the new criteria is that they’re more open-ended than the old ones,” said Catherine Lord, the senior researcher on the study. “So it’s very important to find a clinician who understands them, and who is not rushed when making a diagnosis.”

More open-ended means more subjective.

The worst problem with the current standards is how subjective they are.

Is Dr. Lord suggesting that the new standards will make the worst thing about the current state of autism diagnosis worse?

And there is a push to diagnose autism more quickly and cheaply, not more slowly and carefully.

Video version of this post at the end.

The big surprise for me in the new autism statistics that just came out from the United States Centers for Disease control is that the discrepancy between boys and girls has actually increased.  Now, boys are 4.6 times more likely than girls to have an identified autism spectrum disorder, instead of four times. And then I remembered that these numbers are actually from 2008.  I think that awareness that there are autistic women who are not named Temple Grandin has increased tremendously in the last four years, and I think that we will probably see a change in the other direction with the next set of data.

Why are do there appear to be so many more autistic boys than there are autistic girls?

The one factor that definitely plays a role is sexism.  You see some hint at this in the CDC report itself:

In all seven sites reporting data on intellectual ability, a higher proportion of females with ASDs had intellectual disability compared with males, although the proportions differed significantly (52% for females and 35% for males; p<0.01) in only one site (North Carolina). When data from these seven sites were combined, 150 (46%) of 328 females with ASDs had IQ scores or examiners' statements indicating intellectual disability compared with 608 (37%) of 1,653 males.

In other words, girls are less likely to be diagnosed with autism unless they also have intellectual disability.

Girls are less likely to be diagnosed with autism, even when they display the same degree of severity:

Ginny Russell explained: "Boys were more likely to suffer from severe autistic traits, whether diagnosed with an ASD or not. However, even with the severity of autistic traits held constant, boys were still significantly more likely to receive an ASD diagnosis than girls.

"Boys are more than four times more likely to have ASD and are clearly more likely to suffer from these types of symptoms. More interesting is our finding that even with symptom severity held constant, there is still a gender bias towards diagnosing boys. Our analysis suggests that girls are less likely to be identified with ASD even when their symptoms are equally severe." The researchers suggested that the popular conception of autism as a 'male' disorder may contribute to this bias. 

I tend to believe that the popularity of Simon Baron-Cohen's theory that autism represents an "extreme male brain" probably has something with the movement toward even more bias in favor of boys in diagnosis than was previously the case.  In England, where his work is about twice as influential as it is the United States, researchers  found men were nine times more likely to be autistic than women.

Also, testing seems to be biased to be favor of showing the kind of autistic traits boys are more likely to have, according to research done by Somer Bishop, Marisela Huerta, and Catherine Lord:

In focus groups, Huerta says, parents of girls often note that the questions don’t capture what is unusual or abnormal about their daughters’ play habits.

Unlike the stereotype of the boys with autism, girls with the disorder are often interested in imaginative play — obsessively so, in some cases. “You don’t expect to see a kid with autism being obsessed with a baby doll,” says Bishop.

Similarly, a girl with the disorder may be socially interested and motivated, but unsuccessful in forming relationships with her peers. “We get referrals from families who are frustrated because they know in their gut that something is not going well in terms of their child’s overall development, but can’t quite figure out why things are so hard for their girls,” Huerta says.

There do seem to be significant differences in the way that autism tends to manifest itself in men and women, although it's always to important not to take generalizations based on gender too seriously. 

But these differences do mean that is very important to have both male and female autistic representation.

I decided to focus on the good part about the new appointments to Interagency Autism Coordinating Committee, which is that there are three autistic members, and they are all brilliant and compassionate guys.  But they are all male, and that's a problem.

It's also a problem when autism projects include only autistic women and no autistic men, which they too often do.  These new numbers underscore for me the need to do more to involve more autistic men in our discussions, in our organizations and in our planning. 

In the video, I get into these sensitive issue in some more detail, and am probably somewhat more controversial. 

Click here to watch.

Alan Zarembo, whose series on autism appeared in The Los Angeles Times last week, appeared on National Public Radio's Talk of the Nation today. 

As he did in The Times, Zarembo emphasizes the disparity in diagnosis and in services provided in California.  He talks to three mothers who describes the struggles they had to get their children diagnosed and to get appropriate services.  Clinical psychologist Catherine Lord discusses the importance of early intervention.  They also explore the controversial topic of "recovery" and the likely changes coming in the next diagnostic manual and the issues regarding Applied Behavior Analysis.  No discussion of autistic adults, other than pointing us elsewhere.