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African-Americans With Autism Face Additional Challenges

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African-Americans With Autism Face Additional Challenges

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African-Americans With Autism Face Additional Challenges

African-Americans With Autism Face Additional Challenges

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Black people on the autism spectrum can have less access to help than others. NPR's Michel Martin speaks with Jackie Pilgrim, who has an autistic son and was diagnosed with Asperger's herself.

MICHEL MARTIN, HOST:

Now we want to spend a few minutes talking about autism spectrum disorder. That's a condition that can make it difficult to communicate and to create social connections. It's a different experience for different people, which is why people often describe themselves as being on the spectrum. For Black History Month, we've got a series called BlackAnd. That's where we're asking people to talk with us about navigating more than one identity. And today, we want to focus on some of the unique challenges faced by black people with autism. Those challenges can include a later diagnosis than others, unexpected responses to authorities and even skepticism within the black community, or so says Jackie Pilgrim, who was diagnosed Asperger's when she was in her 40s. Her 16-year-old son Hunter is also autistic. We reached Jackie Pilgrim at her home in Durham, N.C., and I asked her how she found out she was autistic.

JACKIE PILGRIM: I was in the process of seeking therapy for some childhood trauma and in the process mentioned that I had a lot of questions about some things I experienced as a child, a lot of why are you so different? And you act so odd. And so when I brought those things up, it was suggested that I actually meet with a behavioral specialist.

MARTIN: Was it something that kind of put the pieces together for you? And the reason I ask is that I have spoken to other people who say that they always felt different but they didn't have a language for it, and this kind of helped them put the pieces together. Would you be comfortable telling me some of the things that it explains?

PILGRIM: As a child, I was quite precocious. I was a self-taught reader, and I had a difficult time even relating to peers. I much preferred adults. But of course, at that time children were meant to be seen and not heard. So I wasn't - my presence around adults wasn't welcome. And I was always correcting grammar.

MARTIN: Oh, and I can see where that would not be appreciated...

PILGRIM: Right, right.

MARTIN: ...Especially by adults...

PILGRIM: Exactly.

MARTIN: ...In that era - and even not now, so...

(LAUGHTER)

MARTIN: Did you feel that there are other challenges that perhaps don't affect you specifically or your son specifically that are important to be mindful of? Like, for example, I have heard other people worry about the interactions with authority figures and how differently they might be perceived if it comes from an African-American, particularly an African-American male...

PILGRIM: Right.

MARTIN: ...Then from, you know, somebody else. Can you talk a little bit about that and how autism might play into that?

PILGRIM: Certainly, because sometimes - one of the things that's common, especially with males, is there tends to be a little bit more aggression. And not saying that it's an aggressive nature but maybe aggressive behavior or taken as aggression - maybe one would speak louder than normal. So if an officer stops a young man who is on the spectrum and he asks the man - asks the young man a question and the young man doesn't answer right away - and so of course, the police officer asks again, maybe two or three times. He's getting agitated. The young man gets a little agitated, and then he yells an answer. Immediately, that could, you know, prove to be something detrimental. And I worry about that with my son as he gets older because he - takes time for him to answer questions. And sometimes when he answers, he answers kind of in a loud roar. And he's not angry, but that's what he does. And I just prompt him, you know, speak in your normal voice. And then he calms down and he talks in a more normal tone.

MARTIN: But you can see where somebody else might see that as being challenging....

PILGRIM: Absolutely.

MARTIN: ...In a way that they might not if he looked different.

PILGRIM: Absolutely.

MARTIN: Right. On the other side of it though, I understand that you feel that there's also some skepticism in the African-American community...

PILGRIM: Absolutely.

MARTIN: ...About the existence of autism. Can you tell me about that?

PILGRIM: I think there's not enough representation. You know, most of the time when you see something on autism, you see mostly white people. So I mean, I've actually heard people say that they thought, quote, unquote, "autism was a white person disease."

MARTIN: Well, Jackie, thank you again so much - really, really, really appreciate your speaking with us and being so candid about all of this and helping to educate us. That's Jackie Pilgrim. She's black and has Asperger's. She spoke with us as part of our Black History Month series. It's our BlackAnd series where we discuss people who have multiple identities or balancing different aspects of their identity along with their being black. Jackie Pilgrim, thanks once again.

PILGRIM: Thank you so much for having me.

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