Take Note: Autism Speaks' Janet Williams On Autism In The Black Community

Sep 11, 2020

Autism Speaks' Director of Community Outreach for the mid and South Atlantic regions, Janet Williams.

Janet Williams is the Director of Community Outreach for the mid and South Atlantic regions at Autism Speaks. In her latest article, "Making Progress Toward the Dream: Autism in the Black Community," Williams shares her thoughts about the barriers to autism diagnosis in the Black community. She recently started Autism Speaks' newest interfaith initiative called "Blue Blessings" to help faith-based communities create more inclusive spaces for people with autism.  






Kirsten Tekavec: Welcome to Take Note on WPSU, I'm Kirsten Tekavec. Autism affects an estimated one in 54 children and one in 45 adults in the United States. Minority groups tend to be diagnosed later and less often. Autism influences how a person communicates and relates to the people around them. Here today to speak about autism is Janet Williams. Williams is the Director of Community Outreach for the mid and South Atlantic regions at Autism Speaks. In her latest article, "Making Progress Toward the Dream: Autism in the Black Community," Williams shares her thoughts about the barriers to autism diagnosis in the Black community. She recently started Autism Speaks' newest interfaith initiative called "Blue Blessings" to help faith-based communities create more inclusive spaces for people with autism. Janet Williams, thank you for joining us.

Janet Williams: Thank you, Kirsten, for having me today.

Kirsten Tekavec: Yeah, so I kind of just want to jump right in, and you know, I know you have a son who was diagnosed with autism in 2015. Can you describe how he has influenced your work and advocacy?

Janet Williams: My son, his name is Jeremiah. Jeremiah is 11 years old now, and he was diagnosed in 2015 with autism. You know, when, before his diagnosis, like so many other families who get that initial diagnosis, a lot of times you don't know much about the topic, you don't know much about the diagnosis. And so in an effort of just trying to gain a greater understanding and find ways in which I could support him better, I started my research, and I came across Autism Speaks' website. And through that website, I was able to gain a lot of knowledge, a lot of resources that, you know, help support my son, but then I also realized that there was more that I could do to help support him. And that was by getting involved, and so my involvement with Autism Speaks started around that same time at that same year. And I started as a volunteer, you know, just trying to help the community and share resources and information, help get the word out about who Autism Speaks is and what they do. And I eventually became the Autism Speaks Walk Chair for the Atlanta Walk for two years in a row. And then in 2017, I was hired full time as an Outreach Manager for Autism Speaks and later promoted to Director of Community Outreach.

Kirsten Tekavec: So how would you describe your purpose?

Janet Williams: Well my purpose is, is not just about helping, you know, having these resources available to me and my family, but also about helping the broader community, you know, especially those that are in the underserved communities, making sure you know, as a Black woman, you know, there are a lot of disparities that are present and prevalent within those socioeconomic groups. And my goal is to make sure that there is equity and equality for the services and resources that are available for those who are on the spectrum.

Kirsten Tekavec: And how does your role at Autism Speaks relate to that?

Janet Williams: Well my role as Outreach Director, part of what I do is that I actually go out I, you know, do these type of interviews, I actually have, you know, I've been a speaker at conferences, I go into faith communities and, you know, specifically share resources and help and support. I sometimes will go in directly into those underserved communities and meet them where they are to make sure that they have all the resources that Autism Speaks has, and also just resources in general about autism. I also partner with our advocacy team, I'm part of the services and support team. So a lot of what we do is, Autism Speaks is not a direct service provider, but we, you know, provide resources, support, help, you know, just making sure that we and even in the research, you know, of Autism Speaks and what they do, you know, that information kind of trickles down into all of the objectives that we have for all of the different departments, increasing awareness and understanding and acceptance of people with autism.

Kirsten Tekavec: Yeah. So, for those of us who don't know a lot about autism, could you explain what it is?

Janet Williams: Well, Autism, or Autism Spectrum Disorder, it basically refers to a broad range of conditions. You know, those conditions are characterized by challenges with social skills, repetitive behaviors, speech, nonverbal communication. And we also know through research that there are not one autism but there are many, and most are influenced by a combination of genetic and environmental factors, you know, because it's a disorder, sometimes people with autism, they have distinct sets of strengths as well as challenges. And so there needs to be ways in which, you know, we need to learn more, and how to help support those who are on the spectrum by providing those personalized treatments and care information and research to best support those families.

Kirsten Tekavec: So, I wanted to talk about the article that you wrote. It's called "Making Progress Toward the Dream: Autism in the Black Community." The article specifically addresses barriers to diagnosis that Black and Brown Americans face. Could you describe some of these?

Janet Williams: Well, some of the barriers that are often faced within the Black community is that poverty levels can sometimes be higher in Black communities than in White or non-Hispanic communities. Children of a lower socioeconomic status are less likely to be evaluated and diagnosed with autism than those in higher socioeconomic statuses. Sometimes there's just delays there, and a lot of those delays sometimes have to do with not having the appropriate services in their area, or quality services, I should say, within their area to be able to get that diagnosis. And then you deal with things such as transportation, you know, a lot of times you have areas within a certain city, where, you know, I call them "service rich areas" where they have like just a cluster of, you know, high quality services, but then in those socioeconomic areas and those underserved communities, there's a lot less and so the waiting lists are often greater for those families trying to seek out the support and the resources that they need and sometimes it's just not there, even within the school system sometimes, you know, children are labeled as having behavior issues before they even get to an autism diagnosis. And so individuals with ASD and their caregivers, they face higher costs for things like mental health care services, for the different therapies and supports that are needed to help support and take care of a child, even respite care, and respite care is when you can actually have a resource that comes into your home or, you know, provide you with some support, because families sometimes need relief, they just sometimes need a break. And so those respite care services allow, you know, families to continue with their ongoing day-to-day lives, while someone is there caring for their loved one. And also education, you know, they also face a greater risk of not having, you know, proper education in those, you know, socioeconomic areas, and not all the time, but just in some of the areas. So it's not the case for every Black community, but it's certainly the case in a lot of Black communities. There's also a lack of, of the equality of resources, and inclusive community activities. A lot of them don't have resources available, because they don't know that they need to. And so, for that reason, you know, sometimes people feel like they're, they've either done something wrong or that, you know, they're not doing enough. But, you know, I'm just, you know, here to support families and help them understand and know that from somebody who's come from, you know, an underserved community, and, you know, and also being a parent of a son on the spectrum, you know, I want to help to navigate that and help to, you know, provide resources and services, but, you know, even though challenges exist, there's always hope. And so we want to hang on to that hope we keep moving forward.

Kirsten Tekavec: Yeah. Well, you mentioned in your article that there was hope, and I was hoping that, I was hoping that you could describe what this hope is.

Janet Williams: Yes. So, you know, my role at Autism Speaks, it allows me to connect, you know, with families from different socioeconomic backgrounds. You know, as an outreach professional, you know, I can offer opportunities for different resources that are available. You know, also families can see and connect with someone, especially in the Black community that looks like them, you know, there are oftentimes trust issues and barriers that they face, you know, and having someone who can come in and share in some of the challenges or even, you know, the successes that they have in their families, be able to talk to them about that. So, you know, I'm never afraid to share what my personal experiences are, you know, as a single parent and a parent of a child on the spectrum, I was raised in an impoverished community. And so my experience, oftentimes, it's not much different than theirs. So, you know, I constantly encourage communities, you know, to just reach out and know that we're there and do what you need to do. And when it comes to hope, the first thing that you can do is learn the signs of autism. I often say that knowledge is power, you know, and early intervention is definitely key. So if you're concerned about your child's behavior or development, you know, seek out help, you know, we have a lot of resources that are available. And so that hope lies in just making sure that you educate yourself, making sure that you have the resources that you need to be successful; no matter what your situation look like, there's always hope.

Kirsten Tekavec: So, I kind of want to backtrack just a little bit. And you mentioned that some of the barriers were related to socioeconomic status, a lack of services, transportation, people just labeling other people with autism and not really understanding quite what it is. And then you mentioned education. And you also talked about knowledge being power. So I'm just wondering, what is Autism Speaks doing to address the racial disparities in the treatment of autism?

Janet Williams: Well, let me kind of highlight some of the work that Autism Speaks has done and what we continue to do. You know, since 2007, we have worked with the Ad Council to lower the age of diagnosis, especially in those underserved populations. You know, we're starting to see those results. And, you know, that gap in the age of diagnosis between Black and White children, the CDC has indicated that it's closed, but we still know that there's so much work that needs to be done in that area. Now, we believe one of the most powerful ways to, you know, foster understanding is to highlight the diversity of experiences within the autism community, so we have platforms available for authentic stories of autistic people. And that includes all races, ethnicities, abilities, socioeconomic statuses, belief systems, and identities. And so for people who want to share their story, you know, we invite them to reach out to us through our social media. You know, we inform and engage congress on equities in autism health care for minority and other underserved groups throughout the year. And so, there are a lot of resources that are now legislation that is now being proposed that specifically highlights, you know, police reform for those who are in, you know, those underserved communities that have to deal with, you know, just encounters with law enforcement and making sure that they're, you know, properly equipped for that. So, you know, we prioritize evidence-based strategies for improving the lives of all people, you know, with autism no matter what their backgrounds are, and we regularly engage with the autism research community to shape those research priorities, you know, so we had in 2019, a thought leadership summit on health equity. And it featured, you know, keynote remarks by one of the co-chairs and co-founders of the Congressional Caucus on Black Women and Girls, which was representative Bonnie Watson Coleman, you know, we advocated for the expansion of federal autism research investment in projects, you know, serving the needs of underserved groups and in minority communities. And so we will continue all of the work that we do, you know, we partner with other autism organizations as well, who will work directly within their communities, you know, and, you know, these are groups that, you know, they have a level of trust already built within those areas. And so we continually work with them and help provide funding, you know, to support their initiatives as well.

Kirsten Tekavec: Whenever you go in there, into these communities for the first time, and then people hear this information for the first time, how do they respond?

Janet Williams: A lot of them are surprised. I often hear after a presentation, they'll come up to me and say, "Oh my gosh, I learned so much. I didn't know." I've even had people come up to me and say, "You know what, I think I may have autism." I've even had people to come up and say, you know, "For years, I thought that my child just had some behavior issues, and because of the information that you've shared, I need to go back and look at that differently; I think I need to take my child to get a diagnosis or my loved one to get a diagnosis." And so, again, as many people that know that autism exists and know what it is, there are so many more people that don't know what autism is, and especially in a lot of the underserved communities. You know, again, before my son was diagnosed, I can't tell you that I knew anything about autism, and that was in 2015 so it wasn't that long ago. So there's a lot of work still that needs to be done.

Kirsten Tekavec: If you're just joining us this is Take Note on WPSU. We're talking with Janet Williams, the Director of Community Outreach for the mid and South Atlantic regions at Autism Speaks. She recently started Autism Speaks' newest faith-based initiative called "Blue Blessings" to help faith-based communities create more inclusive spaces for people with autism. Janet, can you tell us about that initiative and why you started it?

Janet Williams: Thank you, Kirsten. Yes, I can. So with one in 54 children on the autism spectrum, it is likely that communities are impacted. So in many ways, you know, a faith community can be an extended family that embraces and nourishes its members with that compassion, support, and hope. And so autism, I'm sorry, Autism Speaks' Blue Blessings, it was created to help, you know, with work in the communities to create more accepting and understanding support systems that include schools and employers, places of worship, you know, and so this is why this was created. Just from my own personal story of having a son on the spectrum, you know, and serving in ministry for many years. For about three years, I was unable to go because there were no accommodations in my faith-based organization that could accommodate my son's needs. You know, he wasn't going to sit still during services, he needed to get up and move around. He needed some, you know, to be walked out more and so I found that when I did take him into faith-based organizations that didn't have appropriate supports for him I would often be asked to leave or have to leave, you know, or didn't feel welcome, because those accommodations were not present. And so Blue Blessings was created as a result of that, you know, to help faith communities embrace people with autism and those who love them. So, you know, Blue Blessings, first of all, it's not a singular, you know, activity. It's an approach to take a fresh look at ways in which faith communities can commit to becoming even more inclusive, even for those that already are, you know, so, you know, we encourage them that, you know, sometimes it may mean small changes like providing headphones for those who may have more sensitive issues to noise or, you know, providing some additional supports such as a quiet room, or a place where families can just kind of go and take a break, or even an autism or disability ministry, you know, that people can take their loved ones to while they can go into our services. But it also, in addition to that, you know, just being able to have autistic people and their loved ones, be part of those services, maybe they can serve as greeters or serve as a buddy or, you know, there are employment opportunities within faith-based organizations. So we want to identify, and we have identified all of those areas in which the faith community can help support, you know, those needs, not just on one day of the week, but you know, most faith-based organizations, they operate us businesses, so even during the times that they're open, provide mental health resources and services for those families, because they need it. So, you know, we just want to help increase that awareness within the faith communities and that's why Blue Blessings was created.

Kirsten Tekavec: So, in addition to headphones, quiet room, a break room, maybe perhaps a separate disability ministry, or, you know, they could, you mentioned that they could serve as greeters or something like this. Is there anything else that faith-based communities could do to be more inclusive towards people with autism?

Janet Williams: Well, you know, one of the things that I encourage people to do is, you know, this is a term that, you know, we came up with like a "Blue Blessings Day" where they can set aside a day, you know, that they have services or come together-- even a month, you know, during World Autism Month is the perfect time to do it, which is the month of April, you know, to highlight maybe even if a family doesn't choose to disclose or a loved one doesn't choose to disclose but even just highlight autism resources that are available, you know, maybe put some information in their bulletins and share information, you know, with families or even having sensory rooms, there are just a lot of things that they can do, you know, to help educate the community, and during World Autism Month is the perfect opportunity and time to do that.

Kirsten Tekavec: Yeah. And you mentioned that you were a religious person. And so I'm wondering how have you seen this initiative, Blue Blessings, play out in your own faith community?

Janet Williams: Well, in my own faith community, I now am part of a faith community in which they implemented Blue Blessings. They implemented the program not just for my son, but so now everyone who comes, who has a need, and they don't just serve, you know, those with autism, but all disabilities. They actually have rooms that are set up, you know, they have sensory areas, they have quiet rooms, they have places of, you know, rooms that almost look like a track on the inside where they could just walk around if they have extra energy that they need to get out. So there are a lot of resources that are provided, you know, by my faith community that didn't exist before that I'm very, very proud of. So, I'm very excited about them, and they will continue to expand and continue to support that as well.

Kirsten Tekavec: That's awesome. And I have a two part question now. So have you seen Blue Blessings implemented in other faith-based communities? And if so, are there any similarities or differences across the different faith-based communities in the way that they approach inclusion?

Janet Williams: There are, again, Blue Blessings is an interfaith initiative. So it encompasses all faiths. And so I think that you know, there are certain communities that have had long-time inclusion programs, such as the Jewish community and even the Latino community. So there are a lot of-- and even you know, I had a conversation recently with Shannon Royce, who's the Director of the Center for Faith Opportunity Initiatives at the US Department of Health and Human Services, the HHS, they have a faith initiative department. And so, you know, they work with several faith-based nonprofits. And so, you know, that group, you know, they focus on issues, such as sex trafficking, you know, global hunger, and protecting religious liberty. So, you know, they just have a lot of resources and help that is available, that people don't even know exists. But, you know, they have also a lot of connections, you know, with influential faith-based leaders across the country, and so we continue to connect with them and provide resources where we can. So it's exciting to see faith organizations-- I was informed by our public health department that one of our African groups over in Africa, they've actually adopted the Blue Blessings initiative. And, and are providing, you know, and making accommodations and providing support, you know, over in Africa. So, you know, I see this as being a global initiative that can definitely reach all faiths, all organizations, and we will continue to move forward with that.

Kirsten Tekavec: Wow, I didn't realize that it was international. So, what are some practical steps people can take to support people with autism and the initiatives you've described here today?

Janet Williams: Well, one of the things that, you know, people could certainly do, again, I'll go back to identifying, you know, what supports are needed. Go and get a diagnosis, you know, that's one of the first steps. Learn what the signs of autism are. We have a two minute screening questionnaire, you know, on our website, that you can actually access and it just kind of, it's not a diagnostic tool, but it is a resource tool that just kind of helps you identify and answer questions and, and then it will recommend if you need to, you know, go see a developmental pediatrician or a health care provider, you know, learn what to do after you receive an autism diagnosis. We have two kits and resources that are available for that, we have our 100 day toolkit it's for families of young children or school-aged children. And these kits offer guidance and helpful resources for families. You know, find out about what treatments are available. You know, there is no one-size-fits-all approach to anyone who is on the spectrum. You know, we have a lot of school-based resources, like our guide to individualized educational programs, which is the IEP. So as you think about your child's long-term goals, if they're children, you know, those transition to kids. We have information that talks about schooling, employment, housing, and then learn how to properly advocate, you know, for yourself and for your loved one, and then get involved. There are a lot of ways in which, you know, you can get involved. Again, like I stated, I served as a volunteer with Autism Speaks. We even have advocacy ambassador opportunities where you get to have meetings with our advocacy team, as they, you know, help fight for legislation, the passage of legislation in Washington, DC. And so, and then in your faith community, you know, get your faith community involved, you know, start with your leader in providing resources-- go to autismspeaks.org to get resources for your faith community to share with your leaders.

Kirsten Tekavec: Well, I'm familiar with your work and it sounds like what you're doing is very meaningful to you, and you've made a huge impact. And so, I just kind of want to bring this back to the beginning, and I want to know, what advice would you give to someone who wants to fulfill a personally meaningful purpose through their work?

Janet Williams: Well, I think that when you're passionate about something, it's not work. You know, when you're passionate about something, it drives you. Even when you're tired and you're exhausted, it drives you to be creative, it drives you to seek out ways in which you can best support those causes that you truly care about. So whatever that cause is, you know, don't give up. It's not an easy road. Sometimes I get more "no's" than I get "yes'," but you can't let that deter you. You know, for every "no" that I get, you know, I know that a "yes" will eventually come if I keep fighting for it. So, you know, know that you're not alone, you know, get some, people in your corner, you know, some allies in your corner to help walk with you and support you. But more than anything, you know, take care of yourself, take care of your mental health. You know, just because you can't save anyone else until you save yourself, you know. So there's a reason why when you're on an airplane and they say put your mask on first in case of emergency before you put it on anyone else, because if you can't provide the help and get the help and the resources that you need for yourself, you know, it'll be very, very difficult for you to be able to help someone else. So I just encourage you to keep moving, no matter what just keep moving.

Kirsten Tekavec: Janet Williams, everyone, thank you for speaking with us.

Janet Williams: Thank you so much. I appreciate that. This was great. So, yeah, thank you for allowing me this opportunity, I appreciate it.

Kirsten Tekavec: Janet Williams is the Director of Community Outreach for the mid and South Atlantic regions at Autism Speaks. She recently started Autism Speaks' newest interfaith initiative called "Blue Blessings" to help faith-based communities create more inclusive spaces for people with autism. In her latest article, “Making Progress Toward the Dream: Autism in the Black Community,” Williams shares her thoughts about the barriers to autism diagnosis in the Black community. You can hear more take note interviews at wpsu.org/takenote. I'm Kirsten Tekavec, WPSU.