Education & Healthcare Disparities for Black Autistic Adults

Segment 1

Transcript

Education & Healthcare Disparities for Black Autistic Adults

February 18^th, 2024

Welcome everyone to Today’s Autistic Moment: A Podcast for Autistic Adults by an Autistic Adult.  My name is Philip King-Lowe. I am the owner, producer, and host; and I am an Autistic Adult. Thank you so very much for listening.

Today’s Autistic Moment is a member of The Autistic Podcasters Network.

Explore, Engage, Empower: Today’s Autistic Moment-The Podcast for Intersectional Autistic Adult Communities

This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota, known as AuSM throughout Minnesota’s Autism community. As Minnesota’s First Autism Resource for more than 50 years, AuSM serves the whole state, the whole spectrum, for the whole life. Visit AuSM online at ausm.org. 

Thank you for joining me for Education & Healthcare Disparities for Black Autistic Adults. Precious Lesley is my guest. 

Please visit todaysautisticmoment.com where you can listen to the podcast, get transcripts, program updates, and read the guest bios pages.  Please visit the Future Shows Page to read the titles, guests, and descriptions of all shows coming up through March.  The transcripts are sponsored by Minnesota Independence College & Community. The transcripts can be read and followed from the website.  There is a link provided to get access to a document form of the transcript so that you can print it, so it won’t use up the ink on your printer.  The written document has a font that is accessible for dyslexics.  While visiting the website, please consider supporting the work of Today’s Autistic Moment with a financial donation or purchase a 16oz drinking cup and/or a lapel pin with Today’s Autistic Moment’s logo on them at the Logo Shop.

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The first episode of Autistic Voices Roundtable Discussions: Celebrating Intersectional Autistic Lives in 2024 will be on Wednesday, February 21^st at 2:00pm Central Standard Time.  The roundtable discussion topic will be Respect for Autistic Autonomy.  Exploring the importance of autonomy for Autistic individuals, our diverse panel will discuss how decisions affecting health care, careers, clothing, food, living conditions and social interactions often neglect our preferences. Join us for a meaningful discussion on why respecting Autistic autonomy is crucial, the role neurotypical people should be playing in fostering understanding and support. Join us on Wednesday, February 21^st at 2:00pm on the YouTube channel @todaysautisticmoment. The show will be recorded and made available for viewers to see whenever they want to watch it.

During this second installment in recognition of Black History Month, Precious Lesley and I are going to talk about Education & Healthcare Disparities for Black Autistic Adults. 

Access to education and healthcare are dominated by politics and arguments about what is important vs. what costs the rest of us too much money.  Conversations about education and healthcare for disabled individuals are set aside because education and healthcare for those who can afford it and will add the most capital to private businesses and corporations always goes first.  Access to education and healthcare is just as complicated for Autistics.  Add the issue of racial inequality, socio-economic status, and Autism to those layers and we see even less attention to detail. 

Precious Lesley, an AuDHD Adult, is dedicated to providing education and establishing authentic relationships with job seekers and employers.  Precious is the Founder and Principal Consultant at Loud Nerd and helps Neurodivergent individuals navigate the complex job search process, while also assisting employers in diverse and inclusive teams and workplace cultures that promote Diversity, Equity, Inclusion, and Accessibility (DEIA).  As a Black, autistic woman, Precious has personal experience with the compound effects of racism, sexism, and ableism and incorporates an intersectional perspective in her work, encouraging other disability advocates to do the same.

After this first commercial break Precious Lesley and I will begin our discussion about Education & Healthcare Disparities for Black Autistic Adults.

Commercial Break I

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Segment 2

Philip King-Lowe 

Precious Leslie, welcome back to Today's Autistic Moment. We haven't seen you since last year. It's great to have you back. So welcome.

Precious Lesley 

Yeah, absolutely. Thanks for having me back. Philip. It's always a pleasure to chat with you. And I'm extremely excited about today's very important topic of conversation.

Philip King-Lowe 

All right, well, um, let's get started here. Because as part of Black History Month, we're wanting to talk about Education & Healthcare Disparities for Black Autistic Adults. And, you know, I've learned over the past few years that the best way for us to learn is to listen to the experiences of Black Autistic Adults, so that we can better understand where a lot of these divisions have come from. So, with that in mind, where can we begin to explore Education & Healthcare Disparities for Black Autistic Adults and how this affects our intersectional communities?

Precious Lesley 

Yeah, so when having a discussion about disparities in the education and healthcare systems, I think it's very important to start the conversation with discussing intersectionality. And short that is essentially how intersection are intersecting identities like race, gender, sexual orientation, socioeconomic status, all come together to form the individual's entire personality and experience as they move through the world. Black Autistic Adults often navigate a complex web of intersecting identities. Their experiences are often shaped not only by being Autistic, but also the other integral parts of their identity, including, like I said, race, gender, sexual orientation, and socio-economic status. So, for example, a Black Autistic Woman would face very unique challenges that would differ even from a Black Autistic Man. And those differences can often lead to compounding disadvantages. Where the intersecting identities for instance, of Black Autistic individual may face discrimination not only on the bias of them being disabled and Autistic, but also have to navigate racial bias as well.

Philip King-Lowe 

Where do you see these education and healthcare disparities happening? Give us an idea of what we're talking about. And you know, what's going on there? And what why do you think these things are happening?

Precious Lesley 

Yeah, so it's, it's very multipronged. I guess we could start with talking about educational disparities. And I think that starts with discussing the issue with access to quality education. More specifically, talking about education in the K through 12 sense. As I'm sure you're aware, here in the US, our education or public education system, is funded by property taxes. And, you know, for many reasons, both, you know, modern and historical, a larger percentage of the black community lives in areas where there's often times less property taxes and therefore less funding for public schools. And so that in itself access to quality education issue for those living within that community, including the Autistic individuals in that community. And then also another part of that issue is when we get into the discussion of racial bias and stereotyping. So, I currently live here in Nebraska, where 95% of our public education, teachers are from white middle class to affluent backgrounds. Which is, you know, which is fine. And well, however, when those individuals are not receiving culturally competent training to work with a diverse range of students that they are going to work with in the public education setting, it can lead to issues with, you know, racial bias and stereotyping, getting in the way of not only the student's education, but you know, the teachers themselves are not often not properly equipped, and experienced a lot of frustrations and being able to perform in their roles.

Philip King-Lowe 

Yeah, especially since over the last few years, we have seen a rise in racial rhetoric, that is obviously impacting how people think about other races. You know, we have seen a rise in white supremacy over these past few years, because of how our political and social landscape has been being shaped by racial, racially motivated violence. And that sort of thing. What do you think about that?

Precious Lesley 

Yeah, I mean, I don't know how much we're seeing a rise versus how much it's become socially acceptable to have those conversations. Um, you know, who knows, it might be a little bit of both in those, those conversations, and those issues are definitely coming up more and more in the education setting. So, ensuring that we are equipping our educators with the tools they need to navigate that, and to, to work with a wide, diverse population of students is going to be key, especially since educators plays such an important role in individuals getting an early diagnosis. You know, as a teacher, as an educator, you're spending sometimes more time with that student than even their own family, and educator in a unique position to you know, identify Autistic traits early on, and to refer that student for assessment so that they can get the proper supports and accommodations that they need to thrive in an education settings.

Philip King-Lowe 

Yeah. And we also have an education setting that is resisting inclusive education. Yeah. You know, and so, we're, we are seeing that affecting racial relationships, and of course, relationship issues for Neurodivergents, because we have this insistence on separating, you know, students with "special needs" and let it be known. I hate those two words. But, you know, they must be separated from the rest of the students, which, for those who don't know, but one of my contacts happens to be Sue Swenson, and she is the Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services with the Biden administration right now. And she is somebody that does advocate for inclusive education. For the purposes of that students get to know how to be in the same classroom with people who learn differently than they do. To learn to allow themselves to, for lack of a better word, become better socially informed about being in an inclusive environment, where you know, diversity is an accepted thing, not a rejected thing. Let's switch this over to the healthcare disparities. And I know the one thing we have to talk about here, of course, with both the education and healthcare disparities, is a lack of economic stability. So, let's go ahead and let's talk about that one.

Precious Lesley 

Yeah, so, when it comes to disparities in healthcare, just like with education, access to health care can unfortunately be an issue for a lot of individuals, especially, you know, when we're talking about Black Autistic Adults. Barriers, like lack of insurance, transportation, challenges, really limits an individual's access to healthcare providers that are knowledgeable about Autism, and who can provide not only the competent care when it comes to Autism, but also culturally competent care. Yeah. Which further leads to other issues like diagnosis disparities. A huge one, especially for black individuals, and even more so for black women and girls. And that that kind of goes back to the DSM-V diagnosis criteria for Autism itself. The research that that diagnosis criteria is based on was done 100% with white male children, the way that those individual present their Autistic traits. It didn't take into account, all the other, you know, intersectional identities that are really going to impact an individual, especially when you're talking about something like Autism, where we're looking at communication differences and things of that nature that are going to be heavily influenced by culture. And so, you know, if you're, if you're female, if you're an adult, if you're from a different cultural background, all of those things are gonna shape the way that your Autistic traits are going to present a little differently than how they're defined in the DSM-V.

Philip King-Lowe 

Yeah. Can we talk a little bit give some examples of how that criteria in the DSM-V is problematic for Black Autistic Adults? And that sort of thing? Because I think, you know, coming from the white population, I think, I don't think I would understand if I don't hear from someone within the black communities as to how it is, you know, not racially diverse.

Precious Lesley 

Yes. So, let's take some of the common communication things that are looked at to assess an individual or even in like a school setting, refer an individual for assessment. If there's an individual who is very blunt and direct in their communication style. If it were a white student, they may, you know, the educator may look at that student and recognize that this may be a trait of Autism, perhaps I should refer this individual for assessment. Unfortunately, there are many stereotypes and biases that kind of muddy that when we're talking about a black student, you know, there are stereotypes that black people are very direct, even rude, blunt. And so, it's oftentimes looked at more of a defiant individual or behavior that needs to be corrected, rather than recognizing this could be a trait of Autism. We need to look further into this. Perhaps this individual needs accommodations and supports in the setting.

After this next commercial break, Precious Lesley will talk about the importance of listening to Black Autistic Adults and their concerns about education and healthcare disparities to help them discover resources to assist them.

Commercial Break II

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Segment 3

Philip King-Lowe 

How can we engage the intersectional Autistic Adult communities, to do our part to help eliminate education and healthcare disparities for Black Autistic Adults?

Precious Lesley 

Yeah, I think it all starts with educating and supporting those who are providing the services and supports in those settings. You know, ensuring that our teachers and our health care providers have the tools they need and are properly trained and support it and how to, you know, for starters, you know, recognize that individuals may need support and then how to follow up brow engaging those individuals and just making sure that we have that safe and open door policy where, you know, those receiving services feel comfortable opening up and feel as if they're going to be heard and supported

Philip King-Lowe 

Yeah. And I like to save this as a place where I have to say that one of the things that I do not see happening or do I do not hear about happening is for. For white Caucasians listening to Black Autistic people tell their stories about what they're experiencing. I've heard this said many times that among the problems that it that is there, that has to do with race, and, and also Autism itself, is that the need to discuss it is either shut down by the white majority, or that a lot of the black communities find these things difficult to, to discuss because of how, how angry they are, because of the level of discrimination they have experienced. So, to discuss these things, comes from that place of having experienced things like being arrested simply because, they're having been profiled just because. And so having those discussions is very difficult. But somehow, we need to break through some of those barriers to be able to talk and listen to each other. Do you agree?

Precious Lesley

Yeah, absolutely. And it, it can be difficult at times when we're having these intersectional conversations. You know, as a, you know, as a black Autistic woman, you know, some of my experience isn't shared with the greater black community. Some of my experience isn't shared with the greater Autistic community. Some of my experience isn't shared with the greater female community. And it, it all comes together, you know, as a unique black female Autistic experience. However, it's very important to have those nuanced conversations. And each of those various communities and, and really showing how these identities overlap. And as part of the human experience, you know, it all of our experiences as we move through the world shape our worldview, and our values and beliefs and are uniquely human. And so having those intersectional conversations is going to lead to a more nuanced and robust conversations as we're advocating. Yeah. the right direction together.

Philip King-Lowe 

What was some of those conversations look like? What do you how do you see those conversations actually happening? And what do you do you have any idea that you might like to share about? If those conversations were to take place? What would that look like that tells you that we're making some progress? Because again, I feel like there's a lot of these just like, it's difficult to explain to a person who is not Autistic, to understand the Autistic experience. Because, as I said, I can't think like, think, or speak or behave like a neurotypical person because I'm no., You know, and, and just like, so. I'm not a black Autistic, so I can't understand that experience compared to mine. I can understand the Autistic experience. But to understand that from the person that is just, you know, a lot of us who are privileged to be white, we may not like to talk about this, but there is the tendency to minimize or dismiss the black Autistic experience as if it's not relevant. It's not important. And that's exactly one of those things that creates a lot of these disparities. Because we're minimizing or dismissing the other's experience. So, to change that, I mean, what does that what might that change look like? And, again, getting us engaged, it's part of understanding what's missing? And what needs to be included.

Precious Lesley

Yeah, so it starts by, you know, recognizing that you're correct, you know, you can't fully know something that you'll never be able to personally experience. I am not a man as you are, I am not white, I can never fully know and experience those things and walk through the world and engage in that way. However we do, all of us we have the ability to empathize on a cognitive level. We can listen with an open mind. And, and really take in what people with that lived experience or are sharing with us. And there, there's oftentimes ways to have those conversations where I can explain things to you in a way that connects it to something that you have experience. I find that that often helps people with the empathy piece and kind of helps it to click on a moral level. I really liked my similes and metaphors for that reason.

Philip King-Lowe 

Would you please explain to us what code-switching means? You use that term last year? I've heard some others use it. What does that word code switching mean? Please talk about that, to help us understand how that works, and also, how that might be related to masking.

Precious Lesley 

Yes. Yes. I'm sure you are familiar, and many Autistic Adults are familiar with the term masking. Um, code-switching is very similar to masking in the sense that here, at least in the US, our dominant culture is very much Eurocentric. It's based on you know, white American social norms and standards. And therefore, any individual who is not of that culture is in a way forced to code switch, or you could call it mask to adhere to those cultural norms. So, in the workplace, and in educational settings, we are we're held to the dominant cultures, social norms, and switching can involve things like changing up a person's dialect and the way that they speak to be more like the dominant culture. Using different vocabulary. Straightening your hair to appear to be more Eurocentric. And it's just like masking. It's a survival tactic that many people develop in order to survive to get by in the world, you know, to get ahead in school to get ahead in jobs. We learned to mask in a way or code switch to I guess, adhere to standards that aren't necessarily our own.

Philip King-Lowe 

One of those healthcare disparities, and please feel free to talk more about this, I constantly hear whenever we hear the media talk about a particular physical medical condition or, or something like that. They almost always close that discussion would say this affects black people more than white people. I mean, that's, that's really a probably more of a blatant example of racism. Do you agree?

Precious Lesley  

Yeah. And I think a lot of that really, sadly breaks down to a lot of the diagnostic disparities and medical bias and discrimination issues that we see within healthcare, and I mean, when we're, we're talking about Autism, in particular, black individuals and like I was saying, especially black female individuals. Are a lot less likely to a get diagnosed. If they are diagnosed, we tend to get diagnosed much later in life. I personally wasn't diagnosed until my early 30s. We also, a lot of us will experience misdiagnosis. A lot of times, especially, you know, black female individuals will be diagnosed with things like bipolar disorder, personality disorder, and then placed on antipsychotic medications and other extreme pharmaceuticals that are not at all needed or helpful with devastating side effects before we reach the point where we finally if we're lucky, receive an Autism diagnosis. And, I mean, I I'm sure you can imagine the damage that does to a person's life, their health. And so yeah, it's this is this is a huge issue within the healthcare community that has to be addressed. So yeah, it's, you know, it's I think a lot of it is just, we're really missing the mark and allowing bias and stereotypes to really cloud our judgment.

Philip King-Lowe 

Now that we have explored the education and healthcare disparities for black Autistic Adults, and talked about how we can get Autistic Adults engaged, how can we empower them to become proactive to changing this landscape? It's one thing to talk about, you know, taking an action, but then there's the need to be proactive, whether it's within ourselves, or, you know, with a greater Autistic community.

Precious Lesley 

Yeah, so there definitely is a lot that we can do on the individual level, especially when it comes to education. I, it's so important for, especially when we're talking K through 12 education for students and families to know their rights. To educate themselves on I'm going to use this "special education services" that are available to them, and that are their right to access. And so really doing the research to understand that, you know, looking at other things like 504 plans and IEP plans that can be put in place for students to have more individualized educational access is super key, and then just, you know, advocating for your student and helping your student learn to grow to advocate for themselves. You know, and same thing goes for health care, understanding your patient rights. Seeking a second opinion. You know, the doctors don't know everything. And so, you know, if you're running into issues and concerns with one, you know, health care provider, just really diving in and perhaps seeking an opinion from others and using online tools that are available for us today to really vet those health care providers and ensuring that you're gonna connect with a provider that is able to meet your needs.

Philip King-Lowe 

One of the ways to be proactive is to become your own best self-advocate. You know, we can have the doctors, you know, do all the research, and read all the manuals and everything. But when they hear it direct from our own mouths, it helps them. And I know sometimes it's like, are they really listening? And sometimes we have every reason to question that. But the thing is, is that there is no substitute for hearing from us that something they've said, is not working or something they've said is or decided does not feel right. And you might you know why. And I know that communication. Communicating our needs to our healthcare professionals, is part of one of our greatest challenges as Autistic Adults. But you know, when we become our own best self-advocate, and really, if we don't become our own best self-advocate, nobody will. And so, as part of, you know, Black Autistic Adults, I think one of the ways that I encourage other Autistic Adults to become, to empower yourself is to, you know, include some of our intersectional communities in your conversation. And when I say include them, I don't mean conditional inclusion. I mean, talk with them, listen to them become someone they can trust, even if, and you can, please correct me if I'm being insensitive here, Precious, but even though you may become engaged, by using terms or languages, and you don't see how they may be affecting another person, take that step forward to listen to how that experience affects them, and become proactive in unlearning what you've learned. What do you think about that Precious?

Precious Lesley

Yeah, absolutely. Um, we, we all have to, at some point in our lives, really examine the, the beliefs and values that were instilled in us and check in to ensure that they are aligned with who we are as adults. And so, I think that's key.

Philip King-Lowe 

You know, a lot of us again, in the white majority, we have been affected by a lot of the things our parents may have said and done. I know that I am myself. I heard a lot of racial rhetoric when I was growing up, and I've had to unlearn for myself, how that rhetoric has affected the way I think. And so that is by becoming aware of what it does with how you think. And then I also think it comes from questioning, was that right? Or was that not good? And then allow yourself to, again, hear the experience of black Autistic individuals, and give yourself permission to change what you thought or always thought was true. One of my goals with having black history month with Autistic Adults, is because, you know, we need to hear your experiences, we need to hear what sort of how certain things are impacting you. And, and, and I feel that having conversations like this is part of being proactive to change the landscape. What are your thoughts on that?

Precious Lesley 

Yeah, absolutely. I mean, having these conversations out in the open, and, you know, keeping an open mind to learning from one another is key to getting the change that is going to benefit us all as a society. And yeah, this is absolutely how it starts.

Philip King-Lowe

Yeah, absolutely.

After this final commercial break, Precious will update us as to what is happening at Loud Nerd and that she has joined the board of Umbrella Alliance US along with one of my more recent guests Angela (AJ) Locashio.  Immediately following that Today’s Autistic Community Bulletin Board.

Commercial Break III

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Future Shows

Today’s Autistic Moment begins Women’s History Month on March 3rd with guest Karen Timm, Education for Autistic Women.  Due to the misinformation about Autistic women, they are often at a terrible disadvantage when it comes to education.  Karen Timm is an educator who will talk about education for Autistic women, and what is needed to advocate for their learning needs.

On March 17^th, Michelle Markman returns to Today’s Autistic Moment for Autistic Pioneers: Unearthing the Female Architects of Discovery.  The history of Autism is blurred due to the lack of recognition of the many Autistic women who are part of the Autism story.  Michelle Markman will name and talk about many Autistic women and their contributions to where we are now.

Autism Acceptance Month will begin with a show about Autistic Culture and Language with Rachel Cullin.

Check out the Future Shows page on todaysautisticmoment.com for all upcoming shows and guests. 

If you would like to offer to be a guest, go to the Be My Guest page on todaysautisticmoment.com to fill out the Guest Intake Form.

If you have any topic suggestions, please go to the Contact Us page and submit your ideas.

Thank you for listening to Today’s Autistic Moment.

Segment 4

Philip King-Lowe

What's happening with Loud Nerd? Tell us about anything that's happening there. You've got some good job opportunities up there. So, got any news of things that are happening there?

Precious Lesley

Yeah, so let's see. For the most part, things are pretty much the same with Loud Nerd. I personally have recently join the board of Umbrella Alliance US. I'm excited about that. I'm really working on a grander scale with Autistic individuals. You know, at Loud Nerd we really focus on the work piece, you know, navigating the workplace, gaining employment, maintaining employment, and so working with Umbrella Alliance US, I'll be able to branch out more and into other areas. And my work with Loud Nerd, especially in some of the conversations I have, you know, parents reach out a lot and are just really frustrated with some of their experiences with the education system. And so, partnering with Umbrella Alliance US is really going to allow for me to do more in that area. And so, I'm super excited about that.

Philip King-Lowe 

Yeah. Angela (AJ) Locashio was on in December. And after that show was done. They mentioned that they were going to be doing some networking with you and they were extremely excited about that. Very good. Well, Precious. Thank you very much for coming back to Today's Autistic Moment. This has been a fantastic conversation. And I know my audience is going to benefit from it immensely. So, thank you for being here and by all means we look forward to talking with you again in the future.

Precious Lesley 

Awesome. Thanks for having me again, Philip.

Transcribed by https://otter.ai

Today’s Autistic Community Bulletin Board

All of these events with their links can be found at todaysautisticmoment.com/bulletinboard.

Join The Autism Society of Minnesota for their Adult Coffee Club.  The next Coffee Clubs will be on Tuesday nights from 5pm to 7pm at Dogwood Coffee in St. Paul on March 5^th, April 2^nd, May 7^th, and June 4^th.  Please RSVP at ausm.org.

Understanding Autism virtual classes will be offered by The Autism Society of Minnesota. These classes are perfect for Autistic individuals, caregivers, those who want to understand the basics of Autism and support Autistic people. The next class will be on April 8^th from 10am to 12pm.  Classes are free of charge, but you must register to attend.

On Tuesday, February 20^th beginning at 7-8:30pm there will be a work shop at The Autism Society of Minnesota called Learning to Drive While Autistic, presented by Kathy Woods.

Register for part 2 of Language Development in Neurodivergent and other Gestalt Language Processors with Marge Blanc on March 7^th, 2024, beginning at 9am to 12pm.  This is the second part of the workshop that was held on December 7^th of last year.

Registration is now open to attend the Minnesota Autism Conference to be held on April 17^th – 19^th at the Hilton Doubletree Hotel located at 2020 American Blvd. E. in Bloomington, Minnesota.  Keynote speakers include Dr. Paula Kluth and Dr. Devon Price.

Go to ausm.org to get more information about these and other social and educational events, including your opportunity to enter the lottery for AuSM’s Summer Camps at The Autism Society of Minnesota.

MNeurodivergent is a social club rooted in a vision of bringing Neurodivergent Minnesotans together to build meaningful connections.  Its core principle is to foster an environment where all are treated with dignity and respect regardless of ability or preferences. Go to the bulletin board at todaysautisticmoment.com and click on the Meet Up link to become a member and attend their events.

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