Helping Underserved Communities, with Camille Proctor | Spectrumly Speaking ep. 106
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IN THIS WEEK’S EPISODE:
(AUDIO – 47 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts welcome to the show Camille Proctor. She is the Founder and Executive Director of The Color of Autism. Camille’s son was diagnosed with autism in 2008, after which she discovered how difficult services were to find and receive. She also found few organizations that supported African American families with children on the autism spectrum, and very little support. This led her to found The Color of Autism in 2009.
For Camille’s work, visit: thecolorofautism.org
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com
Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com
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EPISODE TRANSCRIPTION:
HALEY MOSS (HM):
Hello and welcome to spectrally speaking. I’m Hayley Moss and attorney, author, artists, and I’m autistic. Today I’m joined here by…
DR LORI BUTTS (LB):
Hi, I’m Dr. Lori Butts. I’m an attorney and a psychologist.
HM:
How are you doing?
LB:
Good, how are you?
HM:
I’m good. I feel like I’m just very tired all the time, though.
LB:
Oh no, what’s going on?
HM:
I feel like I just haven’t figured I feel like we have to revisit those episodes where we talk about sleep and self care, because I feel like I just haven’t been sleeping as much. And I feel like I’ve just been really busy trying to do certain things tie up other projects, just zoom fatigue.
LB:
Right.
HM:
I think it happens after a couple months.
LB:
It sure does. It sure. Does. I have a good cheat sheet about sleeping, I can email you.
HM:
That would be great.
LB:
Okay. Okay. Obviously, meditation, mindfulness and a thing called progressive muscle relaxation really helps to kind of wind things down and get your body relaxed.
HM:
That sounds so nice. I’ve been finally getting back to exercise though. So that’s been a welcome change.
LB:
Good.
HM:
Trying to get outside for some more walks, trying to you know, use the peloton that’s been sitting in my apartment.
LB:
Yeah, I’m a big fan of the peloton. And the weather’s getting nicer and outside is starting to get beautiful, less hot.
HM:
I mean, other than the rain, but all good. Anything new going on in your world?
LB:
No, no status quo. Trudging along.
HM:
That’s such a mood. But we’re all getting there one day at a time.
LB:
Exactly. one foot in front of the other.
HM:
But of course, one of the best parts of our week. I know that we’ve talked about this before is getting to spend time together here at Spectrumly Speaking.
LB:
Exactly.
HM:
And today is no different. So we have a guest Are you ready?
LB:
I’m very excited.
HM:
So today, our guest is Camille Proctor, who is the founder and executive director of the color of autism. Camille son was diagnosed with autism in 2008, after which she discovered how difficult services work to find and receive. She also found few organizations that supported African American families with children on the autism spectrum and very little support. This led her to found the Color of Autism in 2009. Welcome to the show, Camille.
CAMILLE PROCTOR (CP):
Well, thanks for having me. I’m happy to be here.
HM:
Thank you for taking the time to join us today. And as we usually like to start, can you tell us a little bit about your journey to being involved within the autism community?
CP:
Absolutely. As you stated, my journey really started. It really started before 2008 because I noticed that my son, right before he was two, I noticed that he wasn’t making some developmental milestones. And it was just weird to me that it wasn’t pointing. And I know that something that most people wouldn’t acknowledge. But that was just the thing that got me he wouldn’t point it stuff. And sometimes you would talk to him and he would just smile. So I realized that he wasn’t really processing, the things that were being said to him as a infant. And I know for most people that would just be unremarkable. But for me, that was just the thing. And he walked really, really late. And I remember taking him to the doctor, the pediatrician, and they said, Well, you know, boys are slow. And so I get that a lot from pediatricians. Boys are sometimes low boys are lazy. So men, I mean, to the men out there in a world. Yeah, that’s what you’re called. you’re lazy, just so you know. So you’re lazy. So I didn’t accept those as answers. So I just went on this journey to find how I could help my son. And so I found someone, a genetic doctor who tested my son Ari. And she found out he had 47 chromosomes instead of 46. And it was her opinion and I have to preface this It was her opinion that most of her patients who have that one chromosome over who fall in that gray area, had autism. And she said, You know, that’s what I think. But that’s just my opinion. And she referred me to a developmental pediatrician who said he had PDD Nos. and which is, for, in my opinion, it’s like putting lipstick on a pig, which just meant he had autism. So I was happy at that time, because at least it had a name. It being because at the time, as a parent of a child, who’s autistic, you don’t know how to really process that. And I say this, because parents are just a hot mess we are. We don’t know how to deal with most things. And we don’t know how to deal with our children, whether it be autism cancer, whenever we’re just broken individuals. And so I like to say that to people, but and so when I went out into the world, and I sought out support groups, I will go to support groups that were mostly white, and you wouldn’t think that would be a big, big problem, right. But the problem that I kept running across is that they couldn’t relate to some of the nuances that I had, in my own bubble of my own society, like my own ethnicity, they didn’t understand that for someone who was a person of color, and me a person of multiple ethnicities, like I’m from the West Indies. As well as being an African American, that it’s very difficult explaining to people of color, what autism is, because we don’t understand or deal with, or embrace what we see as mental illness. And I preface that what we see as mental illness, that’s not something that we deal with very well. So they also didn’t understand the fact that when my son became a 14 year old, like he is now. And he’s like six feet tall, which he is, and he weighs 240 pounds, which he does not. He’s this tall and lanky. But they didn’t understand and if he was out in the world, and couldn’t articulate himself, and the police stopped him, if he didn’t know how to yield, he would get killed. And they’re like, that’s never gonna happen. And so where are we at? African American people are being killed. So that’s, that’s pretty much where I’m at with all of this right now.
LB:
How is how’s your son doing now?
CP:
Um, he’s just as annoying as any other 14 year old. Do you have any more questions for me? (Laughs) No, he’s great. He’s great. I mean, I love them. I love him to death. And there’s absolutely nothing that I would ever change about him. And he’s what I call a middle of the rotor, meaning for him, he’s kind of lucky. In a sense that so his communication is sort of staggered. So he speaks fluent Spanish, but English, not very well. Meaning he he doesn’t articulate himself, sometimes very well, his processing is delayed. So we work on that a lot. So when you approach him, oftentimes, you in you talk to him, you may know immediately, there’s a delay, and there is an issue with him understanding you. So for him, sometimes. That’s a lucky thing. And I say that, because for it, I know people don’t like these terms, but for a higher functioning person. I feel like that’s sometimes a problem because people expect more. And I don’t mean to be crass, or be mean. But the thing is, is that I have a lot of empathy for what society calls higher functioning people, because they expect so much and they don’t understand there’s so much more that you need. They don’t understand that part of it isn’t like that is very true, though. You’re high functioning. And I always like what the hell does that mean? Like do
HM:
Exactly, people use that word I feel like as a way to say, “Oh, you don’t really need anything”.
CP:
Right? They don’t need it.
HM:
Talking about the language- That’s why I’m like, yep, that’s why I’m one of those people who’s kind of against it. Because every time I would get labeled as high functioning people be like, Oh, you’re fine. You don’t need anything.
CP:
Who said that?
HM:
People would be like, you’re not disabled enough to like, get any accommodations? Or you don’t need anything or you’re fine. I would never know if he didn’t tell me. It’s like, that doesn’t help me at all.
CP:
It does not. And that’s why I feel like my son is by him being a middle of the rotor. That’s just my language. And I know, people don’t like that. But he is, I mean, people, people have a lot of empathy for him and say, oh, what do you need? Either? You’re cute. Oh, you know? And, um, yeah. And that’s kind of like his reality. And it’s gonna be his reality for a little while, at least. But um, you know, I guess I’m just one of those. I’m one of those people where I had to reach, you know, you reach a fork in the road, right? where it comes less about you and more about your kid. Mm hmm. So I’m an interesting type of kid. So, I know I kind of veered off the road, because Okay,
HM:
Hey that’s totally fine. And I think that’s a great segue into our next question to know more about what kind of advocate you are is, we mentioned earlier that you founded a organization and we’d love to know more about the work that Color of Autism is doing.
CP:
So the color of autism focuses on efficacy. Because what I’ve noticed, across the country, especially in communities of color, there are service deserts. There’s places like the state of New York, which has lots of services. Now, there may be issues with people understanding what their rights are, and how to obtain those services. But trust and believe there’s lots of services, if you live in the state of New York, if you live in the state of New Jersey, there are services in the state of Illinois, there’s their services in Pennsylvania, but then you get into the Midwest, where I am, Detroit, I mean, the city of Detroit, well, the state of Michigan, me, you know, and so you’re gonna start to be, you’re gonna start to find pockets of places that you can’t get anything. If you’re in the Carolina, South north, you should just lay down and cry if you’re in Florida. So what we do is we are in Florida. So if I say that, for people who have small children, what I tell them is that if you’re in an underserved community, and you don’t have the resources, we teach parents how to build efficacy in their home, meaning you build a strong foundation in your home, for that child to go out into the world, meaning, the first thing that you have to teach that child is how much you love them, and how much you’re going to support them, period, they need to know that they are loved. That’s first and foremost. And I tell parents, you can’t be walking around here. And I talk to them just like this because I have a lot of different dialects that I use. But I say you can’t be walking around here like, oh, autism is the worst thing that ever happened to me. Because if you keep doing that, that child is going to believe that they are the worst thing that ever happened to you. So we’re not doing this. And I tell people just like that. So that’s number one. Okay? So if you need help with just dealing with some of the anxiety that you feel, because your child is having a difficult time with some of the behaviors because let’s let’s be honest, some of the behaviors are very difficult when a child is small. We we do parent training, teaching, teaching the parent how to deal with some of the behaviors is a six week training program where we start from early intervention, and we go all the way up to transition, meaning transitioning into adulthood. So that we give all of our services are free to parents. And we do support groups. We do sibling support groups, because the focus is supporting the family. So that family can be supportive of that individual or individuals in their family, if that makes sense. Because what I’ve noticed with a lot of advocacy groups is that they people talk about advocacy. But I think that they’ve kind of forgotten that efficacy. And building that strong foundation within a homeless was really important. And I think that for self advocates, such as yourself, not having. And I’m not saying that you didn’t have this, but I noticed that a lot of people don’t have people behind them saying, we love them. And you know what I mean, they don’t have a team of people behind them, whether it be their family or just people. It’s so great. We got their back. You know.
HM:
it’s even more true, I think, for folks who are late diagnosed.
CP:
Absolutely. Absolutely. So we, we teach parents and whoever want to come to our training, we teach all of that stuff, because it’s really important. I mean, I went through a period where I just went through this morning, because I just, I don’t know, it’s hard. It’s hard to tell a parent who’s changing a 28 year old diaper. Oh, you shouldn’t feel sad. I mean, and so I also tell us up advocates, I’m like, you can’t really beat up on a parent who’s depressed because it’s just hard. You know, it is hard. But for me, I had to make the conscious decision that I want to continue to walk around being sad. For something my son that I perceive to be this terrible. Or did I want? Or did I want to embrace who my son was? so that he could be happy? I had to pick one. Right? Did I want to continue to Well, I never was one of these people, right? So I was never the person to be like, I’m gonna throw a birthday party, invite 30 kids and have nobody show up. Because I wanted to throw him a birthday party. I never did that. Although I did throw a birthday party and too many people showed up, because people genuinely liked him. So I never really had that problem. But I never did things. For me. I’ve always done stuff that he wanted to do. So I learned, I learned that it’s all if it had to be about him. And once I learned it had to be about him. My life became a lot easier.
HM:
Mm hmm.
CP:
I don’t know. That’s pretty much all I got. No. But no, we that’s those are the focuses, we try to, we learn that focusing on underserved communities on how to access services is important. Find, for instance, a lot of times in underserved communities, you have school districts that are lacking services. So you have the IEP process, and oftentimes families will go in with an IEP, they’ll pay someone to go in, and they can barely afford it someone to go in and argue for an IEP that they want speech four times a week, right? So I’ll give you a perfect example, you have the Detroit Public School System. Now, we’ll say 1200 Kids qualify for speech and language services, but they only have force for slps. What is the likelihood of your child getting speech four times a week, right? So what I tell parents is that you have the absolute right to take your child to private speech. Your child will not be Mark trolling, you can get outside speech. You know, these are things that parents don’t know. So we make them aware of their rights. We make them aware of what these therapeutic processes are, what they mean. You know, we introduce them to what they are, so they fully understand. Don’t just say you want to do it because you read it on the internet. Don’t put your child on a gluten free casein free diet. If your child does not have celiac disease. Don’t start pumping your kid full of magnesium because you read it on the internet. Like don’t do these things. Why are you doing these things? Just we really try to get to the nitty gritty of why are you doing these there and what’s beneficial to your child?
LB:
Can you talk a little bit about the importance of having diverse voices and autism advocacy as well as you know all these issues that you’re bringing up?
CP:
Absolutely. Now is very important to have diverse voices because there hasn’t been any. And it kind of this is one it kind of chaps, my behind that was I had to take a one You didn’t have to bleep out. Because for so long, you’ve had these large advocacy agencies that have use images of African Americans, Latin x people, and you can’t come into these communities. You can’t use this imagery, and then come into these communities. And you don’t have any connection, right? It’s so important, because I’m not gonna follow your lead, because you’re not part of my community. You don’t know how many emails I get from people. Hi, my name is I’m making this up. I’m going to apologize to a person named Andrea, whoever you are, my apologies. You’re just fictional in this. In this scenario, Hi, my name is Andrea. And I’m a researcher from blah, blah, blah. we’re researching the connection between African Americans and access to services? Well, first of all, Andrea, you didn’t reach out to the color of autism, when you were writing that huge grant, for $5 million to get this money to do this research. You didn’t say let’s partner on this. So I don’t have anything to say to you. Because it seems like an afterthought. These, these people are getting these huge chunks of money to research people, and then the only thing they have to offer me is nothing. And then the offer my families is a $5 Target gift card for spilling their guts. And then they come out with a research study that effectively tells you that the pope is Catholic, like, how many more times are we gonna hear there’s a delay in access to service for African Americans. Next, children, how many times?
HM:
Exactly, you’re gonna hear this – there’s a disparity. And without, I feel like what they do you bring up a really great point that I think is so important, they don’t actually partner with the organizations like yours that are actually doing the work. And I think that’s absolutely ridiculous of them not to. And I’m, I just get angry at hearing that too. Like, wow, like, at least if you’re going to try to understand a community that isn’t necessarily yours. I think it’s really important that you at least talk to the stakeholders who know a lot more than you do. So that’s also why when we have conversations about when we talk about race, or we talk about any of these things, it’s not just Lori and I having a conversation, because it just seems just counterproductive.
LB:
Right, exactly.
CP:
It’s absolutely ridiculous. And then, you know, they try to, I don’t know, they, when I tell them now I’m like, No, I’m not helping you. Because you’ve been doing this for a long time. And your conclusions are always the same. And I don’t understand why it is so difficult to engage. There’s not a lot of color of autism foundations out there. I’ve been doing this for almost 12 years, it’ll be 12 years in February. And I don’t understand the notion of just partnering with an organization who by the way, provides their services to their constituents for free. No one pays for anything that we offer. parents come to our six week, parent training for free, siblings, come to our support groups for free, our social groups, free, everything’s free. Honestly, everything is free, if you want to come to any arbury. Like if you ladies want a great cooking class, and we have one of our cooking classes on free, follow us on social media, you can come for free because we don’t charge for anything. We do take donations. And we’ve been fortunate because we’ve had a group of people that have been awesome, who really led some great online campaigns so we can continue serving our constituents and families across the United States for free and I’m very happy about that. But I’m not very happy about as you said, like organizations just trampling on, you know, families of color and acting like, you know, they exist, but they don’t exist if that makes sense. You only exist when it matters for imagery. And for our panelists, then we’re not really doing anything. But we’ll deal with you when we need To get a big grant for something…
HM:
Its the like, “we only want you when it helps our cause” or further someone else’s narrative.
CP:
Right. Like, I’ll give you an example. I had a meeting. I had a meeting. And, um, so the big thing is diversity and inclusion, right? And large corporations that have, um, you know, they have, they have job, jobs for inclusion. And I’ve had some really great meetings. And I can throw people under the bus by saying their names and their companies. So I’ve had some, but I’ve had some really good meetings with people, right. And I talked about how my population, we don’t have any inroads to the jobs they have. And they were like, Huh, hmm. And I go, Yeah, you do realize that in underserved communities, there are any programs that actually prepares those individuals to get to those jobs. And they were like, they had no idea. And it’s like, it’s great. Did you doing all this talk about diversity and inclusion and all this other stuff, but you, you realize you can’t include them if they don’t have the skills to get to the jobs. And they’re like, oh, awkward silence.
HM:
But you do a lot of amazing work. And you’re doing this work with the families. And I remember, you worked with Netflix, and you had that really great black autistic lives panel, like all sorts of stuff. And I’m like, and you’re telling me about how these companies are telling you to have like a job program, it’s like, do you not do enough?!
CP:
I mean, I love the take on I mean, that’s an animal that I’d love to take on. And we can do it because we we written programs, you know, in this field, I’ve written all types of programs and whatnot, as I like to call them. But the thing is, is that when you’re a company, and somebody is telling you that you’re program, or your grant doesn’t address an issue, you should actually listen to that. Because effectively if you’re trying to be a better company, right, and you’re trying to address the problem with diversity, if someone’s telling you, well, that’s not really addressing the issue that the issue is, is that there’s no inroad for that kid, you know what I mean? Like, if you’re, if you’re offering, well, you know, a large computer company, now I will, I’m not throwing them under the bus because they actually get it. A large computer company has a job fair all the time they have you’re constantly recruiting, right? Mm hmm. They kind of understand that. Yeah. All right. So maybe, maybe there should be a shift, you know what I mean, like, there, there could be a shift in the way that things are done. Because if you’re constantly looking for diverse populations, and someone’s telling you that, in underserved communities, the school system isn’t really set up to train those kids like a lot of STEM programs, a lot of STEM programs, or steam programs can’t really accommodate that diverse learner. I don’t care how high quote unquote, you can’t see me air quote, functioning that person is. Because every time a high functioning person, lets out their function. That’s what I’m calling it. What do they get mad at you? Every time you become yourself, they get mad at you and you kiss us. Mm hmm. True or false?
HM:
I feel that, like be yourself, but not like that.
CP:
Yeah like that. Right? So you need a program specifically to help to allow you be yourself. But try anyway at the same time. That’s all I’m saying. So there needs to be programs developed to keep you on track. You know, how many of you went to law school, right?
HM:
Yes, ma’am.
CP:
And that’s a lot of reading, right. reading a lot of reading. Mm hmm. I’ll just leave that there. So, yeah, this these are things I deal with that and the fact that we all three have something Come on We all love peloton. That’s what kind of gifts me for. Oh, nice. Yeah, I’m dealing with you know, that that that do Cody who cracks me up? One of my favorites is because just for giggles I’ll clip in his laugh at him. But um, yeah, it’s, um, it’s interesting, but I do it is a labor of love because I feel that if I don’t do it, who’s gonna do it? Right, right. And then sometimes people say, well, you’re you’re bringing, you’re bringing? Well, it’s not about race, you know, it’s not necessarily about race. But the thing of it is, is that, um, I’ve had people say to me, like, when we did the Netflix thing I had someone sent me a message and they say, Well, is it going to be from an artistic perspective? Or is it going to be once again, from a non artistic perspective? Mm hmm. And I didn’t know how to take that. So well, this closure, I can be what rhymes with glass. So you don’t have to bleep that out. You can just — imagery.
CP:
So this is kind of like what I said. And it’s not to be rude or mean. But I think it is very important. For autistics to have a voice, I think that you should have a voice. And it’s not it. And even when I was invited to do this interview, I was a little reluctant. Because I think that this is you all’s realm and I think that you all should have a voice. But I also think that it’s very important, for autistics of color, to have a voice and I see. And this is just my opinion, I don’t see their voices being as strong as I’d like for it to be 100% with you on that. Yeah. And so when I get a message like that, I get irritated. Right? Because people who say crap like that they don’t understand that when someone an African American, for that particular subject matter, that young man who we were talking about, who’s in jail right now, Matthew, Roshan, Matthew, when he was born. When he came into this world, the doctor said, Oh, what a beautiful African American boy, they did not say, Oh, what a lovely autistic child. He was labeled black that day. He was labeled black that day. He was not labeled autistic that day, he was labeled black. So from that moment on, he was a black child. And what that person didn’t understand was he’s gonna die black too. And that wasn’t the focus. Kind of hard for me to articulate this. But people of color have a totally different experience period. Because the police saw color first. They they didn’t see autism, they saw color. Mm hmm. Exactly. So and then it says further marginalization by autism to Absolutely. But absolutely, autism was a huge part of that. But color was the first thing they saw. And one thing that’s really hard to tell if you haven’t noticed, it’s hard to tell an African American family. They can’t speak out about anything. Like to go lose it further. Listen, African American families are just like the Irish clans. That’s one of the thing that we did learn you ever watched a movie like all those movies? We run in wolf packs (laughs) you that’s the best way I don’t wanna say clans but we run in wolf packs. Like you do something to one of us. We will break our grandmother’s out of the nursing home. I will wake her up to the mic. We don’t care so don’t tell us…
HM:
Oh my god, I want to hang out with you forever, Camille. Like the more you talk like I want to be your new best friend.
CP:
Like, stop it. Like I told her I was like girl, don’t tell her to get out of here with that. Like he has gone die black. Don’t tell a black mother who she could what she can talk about that was that woman son. She can talk about whatever she wants to talk about if she wants to talk about her son being release, and she wants her son out. She could talk about it.
HM:
And I think it’s such an interesting point. And I think that kind of segues into how I was gonna ask you as well about how you think that the autism community can achieve. This goal of being truly diverse, because as you’ve mentioned, and as a lot of us are also very cognizant of is that autism and disability generally are overwhelmingly white with who has the mic, it’s not something that I agree with. And I know that here at spectrum, Lee, when you mentioned that you were originally thinking a little bit reluctant to take the interview, I know something we’ve been really pushing for, and I know that I’ve pushed a lot for is that we make sure to have more autistic voices here. So most of the interviewees that we’ve had, at least, since I’ve been co hosting the show with Lori have been autistic people. So that’s something I’m really proud of. And I’m also making sure especially with everything going on that we are including more autistics of color, so not that everyone has a voice, but everyone has the mic, because everyone has a voice is something that I know that I truly believe in. And it’s just that which voices are going silenced or on heard because they’re either historically oppressed or being pushed to the margins by society. So that’s something that I’ve kind of been a lot more cognizant of, and trying to be more intentional about with what we do, especially here at spectrally. Speaking. So, I guess I’m really curious how you think that we can keep achieving this true diversity within our community and actually, you know, not be terrible about being inclusive about it.
CP:
You know, the fact that you’re open, right? That’s the biggest, that’s the biggest plus, um, when COVID first hit, and the whole situation with George Floyd happened, I was interviewed by a young autistic man, who was white. And he, he asked me, Well, actually, this is what he said to me. And I had so much respect for him. He said, the best way I could be an ally is just listen, he said, because I can’t be an ally by telling people what they need to be doing. That’s how. So that’s how the self advocate, see, the self advocates have failed. He says, because we come off as hostile and mean, and we don’t want to listen, we just want to tell people what they need to do for us. We don’t want to listen, we don’t understand anybody’s experience, but our own. And I was like, You must be in my head dude cuz…
HM:
That’s true, though.
CP:
And he goes, and he goes, Yeah, we can’t do that. He goes, I don’t know what it’s like to be black. He goes, so if you tell me, these are the things that I need to do to help you, then that’s what I’m gonna do to help you. And so the thing that I would say is that, I don’t know. And it’s funny, I’m slowly and gradually becoming more aware of autistics, and the community, black autistics in the community, because, you know, I have people that follow me now. And I would say to you just keep in your authentic selves. I mean, you will find people, they’ll you’ll find people in the strangest places. But I have to commend you for that. I mean, a lot of people wouldn’t invite someone like myself, who’s crazy. And now you all are my new friends.
HM:
Definitely friends.
LB:
And definitely not crazy.
CP:
Well, you know, hey, listen, there’s people like me who won’t take money from people who sell chicken, who don’t like LGBTQ people and people like Why won’t you apply for that? grant? I’m like, they hate all of the people that like me, so I can’t.
HM:
Exactly it’s you still have to have some sense of morality, you know who you are to?
CP:
I mean, if you don’t like the people that like me, I can’t take money from you. It’s just not right, right. So there’s nothing. That’s how I operate. This is how I roll. So I can’t really answer your question. I don’t know where they are. But I know that they will find you. If you’re genuine and your, your mission is genuine, they will find you. And that’s the only thing that you can do. You know, I commend you for being genuine. And I commend you for wanting to make a difference, because they need to have their voices heard. You know, I think that they’ve been silenced. And I think that they’ve been shushed. And I also think that too many of them have been corralled into a movement. That’s not really about them, if that makes sense. like they’ve kind of had their arms twisted behind their back and kind of made to feel like they need to be part of something that they’re not really a part of point in case I remember when I had a black advocate say to me, Well, I mean, my black self advocates say to me well, ABA is like teaching a dog And I said, well, African American kids need ABA. So let me tell you why. They can’t go out into the streets and be falling out and having meltdowns. That’s we call it, we call it falling out, but the world calls them meltdowns. So they can’t have a meltdown. Right. But I have to explain it to my parents like this, they can’t have meltdowns out in public. Because what happens is, you got a giant kid having a meltdown, the police gets called. So they need a way of self regulating themselves. Because if they don’t self regulate themselves, the police is going to get called. Now a couple of things happen, depending on the severity of the meltdown, and where they are, and what neighborhood they’re in. Because the parent could a, get into some trouble and get the child taken away from them. Because the parent, you know, trying to, to handle the child or whatever could be perceived as trying to rough the kid up, because the kid is having a really bad meltdown. So the child could get taken away, or that depending on the age of that child, if they’re an adult, they could get harmed by the beliefs. So ABA is good at self regulation. Now, I’m not saying that all ABA, because I think that ABA is questionable, you know, so they’re so so I always talk to parents about therapy and how they need to, to interview talk about the therapeutic process and what they want to get out of it, right. But at the end of the day, everything that we do, pretty much in life is ABA, we self regulate ourselves. All day long. We get up, we brush our teeth, we wash our face, we take a shower, we eat, that’s all ABA,
HM:
We don’t get tokens for doing all those things every day– got to give you that.
CP:
No we don’t
LB:
Well, we get rewarded — but we get rewarded, because…
HM:
To some extent I guess
LB:
People like to talk to us because we don’t have bad breath and stuff like
HM:
Well, I mean…
CP:
But see in an African American kids live out there like that, and having a meltdown in that situation and token is not getting killed, harassed. That’s the token not getting killed. And that’s the grim part of ABA there has, because that’s the only thing. And when I say this, and I know people hate this, but you have to look at it. These are the things these are the these are the therapeutic things that are covered by Medicaid in places that have these insurance pockets. So I have to advise parents to take the things that are being offered to them, and how to modify them, so their children can win. So I can’t tell them. If it makes sense to you guys, you can’t keep listening to these random voices on the internet, when you got somebody you got to protect you don’t. It doesn’t have to be the experience that they’re talking about, where they’re talking about a robot and all this other crap, you can fix all of that stuff. But you need to protect this girl, you need to protect that boy.
HM:
How can people find out more about you and the Color of Autism?
CP:
Well, you can go to the color of autism webpage, which is thecolorofautism.org, I’m on Instagram, @thecolorofautism, and on Facebook, @thecolorofautism. Those are my places.
HM:
And thank you so much for that, because I will certainly be following and I’m really excited to get to support your work. And if you have a little bit of time left, we’d love to talk more about building efficacy and families and how we can empower self advocates. And I know you have a lot more to say about this than some of us do. And like you mentioned earlier as far as ally ship, even though I am an autistic self advocate too. I think it’s also really important that we know when to shut up and listen. And I feel like I am not a parent. I know nothing about having a family of my own. I don’t have a living plant in my house, let alone a dog or a cat or a child. So that’s always how I like to start these conversations when we have parents and I know that a lot of self advocates sometimes think that they know better than parents are like, Well, I’m not. Unless I was also a parent of an autistic child or a parent period. I don’t really have much to add to the discourse on this. So I’m happy to pass the mic about empowering self advocates as a family member.
CP:
I know you know at this point says we’re now new friends you know, I got like a zillion thoughts but you know. So I’m like down for whatever. But…
HM:
Let’s give folks the most important points because I don’t Don’t want to like, really mess with everybody’s attention span.
CP:
Now the most important point that I think in regards to everything we talked about here is for your child to know how important they are. Yeah, that’s the most important. Well, yeah, you have to build their self esteem. Because the thing is, is that they have to know that they are loved. That’s the most important thing. If your energy is bad, they will have bad energy, and they won’t feel loved, and not feeling loved is is is depressing. And you want your children to succeed in life, and they can’t succeed without a good cheer team, they need a squad, you got to be that squad. And if you’re not up to it, you go seek out help, so that you can be that strong foundation to build that house for them. So that’s really all I have.
HM:
I think that’s really a great thing to keep in mind and to end on as well. So thank you. So, so much for everything you are amazing. Camille, we are so grateful to have you and to all of you who are following along, be sure to check out the work that Camille Proctor is up to and follow along at the Color of Autism at their website and on social media. I know I will be following and I think that you should be as well because again, this is a really important conversation. And I know I learned a lot today and I know that we could be here with Camille all day long. So be sure to check out differentbrains.org and check out their Twitter and Instagram @DiffBrains. And don’t forget to look for them on Facebook. If you’re looking for me, I can be found at Haleymoss.net or on all major social media. So Facebook, Twitter and Instagram @Haleymossart.
LB:
Thank you so much Camille. I can be found at CSIexperts.com please be sure to subscribe and rate us on iTunes. And don’t hesitate to send questions to spectrumlyspeaking.com. Let’s keep this important conversation going.
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
