29 March 2014

Uptown Radio Interview: Autistic People Demand Support As Diagnoses Rise

Live from Amman on Uptown Radio at the Columbia University School of Journalism! (Thanks to s.e. smith for passing my name along!)

This week, I had the pleasure of speaking with Katie Toth from Uptown Radio about the CDC's new report on the rate of autism diagnoses in the United States. You can check out the interview on Uptown Radio's website or the my transcript below! 

KATIE TOTH: A new report from the Centers for Disease Control and Prevention found that diagnoses of autism in children have gone up one-third in the last two years alone but that does -- that is not necessarily a rise in the number of cases. Some experts believe the higher rates reflect a heightened focus on autism by parents, doctors, and teachers that may be resulting in more children getting diagnosed. But the report also highlighted disparities in the number of white children diagnosed as autistic compared with people of color. And while 1 in 42 boys are diagnosed, the number is way lower for girls, 1 in 189. Lydia Brown is a disability advocate and student at Georgetown University who was diagnosed with autism herself at age 13. She points to our society's stereotypes as a possible reason for the disparity.

LYDIA BROWN: There are a lot of prevailing stereotypes about gender to begin with, even when you take autism or disability out of the equation. There are stereotypes about what it means to be a normal boy versus what it means to be a normal girl. If you're a girl or you're a woman, you're more expected to assimilate, to be quieter, to be in the background, and if you don't speak up much, if you're very quiet, that's just considered, oh, you're just being a shy girl. And because of that, a lot of times, characteristics that might stand out in an autistic boy compared to neurotypical boys might be overlooked in autistic girls.

KATIE TOTH: Looking forward, in terms of seeing this rise in diagnoses, what's this going to mean for people in the autistic community?

LYDIA BROWN: Well, moving forward, the study does show that there continue to be a lot of disparities in terms of who is able to access a diagnosis, and while I personally do not believe in using or structuring the medical establishment as the gateway for who can be considered autistic, the reality is that access to services such as the educational system, such as  vocational services, and other developmental disability related services require documentation--meaning a diagnosis on paper. And because of that, it is critically important that we increase access to diagnosis and diagnostic services for communities, particular those that are already underrepresented, as women, those who might be sexual minorities, people of color. Even the most recent numbers that just came out, the 1 in 68 number, white children were 30% more likely to be diagnosed ahead of Black children and the numbers are also fairly low for Hispanic children. For example, we already know that in the United States if you are a person of color, you automatically face enormous societal barriers in the form of structural racism and how it plays out in public policy, and because of that it is critically important to expand access to diagnoses and the availability of diagnostic services because the same communities that are already being hurt in other areas are further harmed when you happen to be autistic as well as a person of color and you're unable to access services because you are not in a position to access a diagnosis in the first place.

KATIE TOTH: You've sort of found a very tight-knit community online. You've been very much an online presence and an advocate. I'm wondering sort of how that support and how that community changed your life?

LYDIA BROWN: Had it not been for the very vibrant presence of the autistic and disabled communities online, I never would have been able to connect not only with people who were like me and shared experiences with me, but also with ideas that were able to politicize my understanding of my identity as an autistic and disabled person.

KATIE TOTH: Thank you so much Lydia.

LYDIA BROWN: You too, thank you very much, have a wonderful day.

KATIE TOTH: Lydia Brown is an autistic disability rights activist. She was named a Champion of Change by the White House in 2013.


  1. I wanted to ask if you thought the Light It Up Blue campaign had transcended its connections with Autism Speaks and can be used to support Autism Awareness without promoting Autism Speaks?


