Autism studies tend to exclude women and girls

Diagnosing autism spectrum disorders cannot be done with a blood test, so doctors rely on developmental history and behaviors like language difficulties and repetitive behaviors to make a diagnosis. But autism can look very different depending on the person, and can present differently in girls and women than it does in boys and men. According to research at MIT, studies surrounding autism tend to exclude women, and that can prevent women and girls from receiving a proper diagnosis and proper treatment. John Gabrieli, the Grover Hermann professor of health sciences and technology and a professor of brain and cognitive sciences at MIT, joined GBH’s Morning Edition co-host Jeremy Siegel to discuss his research. This transcript has been lightly edited.

Jeremy Siegel: You're an author of a recent study that sheds some light on these disparities in autism research. What exactly did you find?

Prof. John Gabrieli: When autistic people participate in research, they tell us they've received a diagnosis from a physician, or a psychologist, perhaps, and then they go to a second stage of inclusion or exclusion, where they get a standardized behavioral test of their behaviors. And that's used widely in research to include or exclude individuals to be certain they have autism. And the way we understand it historically — it turns out that test, which is a good scientific test, has good motivations — excludes women twice as often as excludes men from participating in research. So we think that's because the way in which we've administered autism tests has been overly influenced by the way it's expressed in males.

And it's only in recent years that we've understood that autism can be expressed quite differently in females. And we need to know that so they get the right kind of help. It's also important for self-understanding. I've spoken with females with autism and they said, 'I never understood why things were difficult for me in certain social communication ways. And now that I understand that I have autism, or I am autistic, you know, all of a sudden that makes sense.' And so we worry about labels leading to biases or prejudices. But labels are also very powerful to help people understand their own lives. And I think we historically have not done a good job in understanding that in girls and women and things are getting better now. But, slowly.

Siegel: I wanted to ask a little bit about that, because in your research, you found that the lack of representation of women and girls in some of these studies can lead to underdiagnosis, can lead to young girls not receiving an autism spectrum disorder diagnosis. What effect can that have on a person if they do have autism spectrum disorders but they aren't receiving a diagnosis from their doctor? What does that mean for them personally?

Gabrieli: So that means they might not get, for example, if they're school age, the kind of support they should get in school. If they're employed as adults somewhere, the kinds of supports that can be offered to individuals with autism to excel at their job and be well-supported. So as much as we worry about labels in certain ways, those diagnostic categories help people understand themselves and help the institutions and places that want to help everybody be comfortable and do their best.

Siegel: Let's go a little bit beyond gender disparities here, considering that it is Autism Awareness Month right now. What else catches your attention surrounding autism spectrum disorders, that you think people who are not experts in the field might not know, but should be aware of?

Gabrieli: Well, one area that we're very interested in, as are others, is appropriate supports on the job, for employment. Because individuals with autism, autistic individuals, can really excel at many jobs, but they might need a little bit of a different support around them to be comfortable and do their best. And the unemployment rate of young adults with autism is really high, and we think that's partly because we just haven't understood what to do to identify those individuals and to give them the kind of support they can so they can flourish in the workplace.

Siegel: How much of that is due to also a lack of health care opportunities for people with autism spectrum disorders as adults? Because I know that the pediatric resources available for kids with autism, they have increased substantially over the years. Have we seen that similar increase for adults with autism spectrum disorders?

Gabrieli: That's an excellent question. The support for individuals with autism once they leave schools often is very uncertain. Because schools give an environment where there's some rules and supports. And then they go off and are independent in the world. And still, some source of support is often very helpful in their lives.