If Jen Msumba of Rebranding Autism isn’t a staple on your social media feed, then take our advice and get her good vibes on your radar. Jen lives on the autism spectrum, and has been through hell and back in her journey to comprehensive care and self-realization. Much of her success has been in facing personal challenges, and seeking the joy in all things to live a full and varied life. An accomplished musician, she has risen to prominence in the patient leadership community through her YouTube channel, where she posts videos of herself playing piano versions of pop music. As her confidence has grown, she has become more outspoken about her daily struggles, and works to inspire others to increase their confidence, get out of their comfort zones, and try new things — something that can be a real challenge for many on the spectrum. Living in residential schools and state hospitals from the age of 15, she survived abusive situations (she readily advocates against electric skin shock, a therapy used to punish adverse behaviors, which she endured daily for 7+ years), and has worked to successfully curb her own self-harming, impulsive, and aggressive behaviors in a healthy way. She now lives in a caring, largely independent-living facility, where she is happy, healthy, and in control of her own destiny. It has been hard won, but worth the fight…and she’s here to serve not only the autism community, but also those looking in from the outside. Team UP: meet Jen. She’s as bright a light as there is, and she deserves our attention.
Key links mentioned in this episode:
Tune in as Jen shares…
- that she’s been in hospital and residential school care since she was 15, and wasn’t aware when she was first diagnosed with autism spectrum disorder (ASD)
- that for a long time, doctors and caregivers didn’t inform her about her diagnosis and treatment because they incorrectly assumed she wouldn’t understand
- that she didn’t become aware of her diagnosis until she was a young adult, and this realization was a relief because it validated her, explaining so many of her own behaviors and allowing her to release judgment and self-criticism
- what her early emotional reactions looked like — including self-harming reactionary behaviors
- that she originally thought all people on the autism spectrum were nonverbal
- how awareness (via diagnosis and proper care) has improved her confidence and self-esteem — and allowed her to be herself
- that she responds well to routine, and works to challenge herself to change things up (and share with others how she feels, and that her feelings are valid and relatable!)
- prejudice she’s experienced in the medical system: doctors often addressing her carers and not her directly — without first consulting on address
- that her YouTube channel started with her posting piano videos — and grew from there
- a description of some of the darker moments in her treatment — in state hospitals and psychiatric facilities, where electric skin shock was used for behavior modification
- that until recently, she continued to have nightmares about her violent past
- the role her faith plays in her healing
- the sage advice her mom gave her that changed her life
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Lauren: Okay, guys, thank you so much for joining us. I am here today with an awesome patient advocate, Jen Msumba. Jen is here to talk about living with autism spectrum disorder. And we’re going to get into everything. So Jen, thank you so much for being on the show today.
Jen: You’re welcome, Lauren.
Lauren: It’s so nice to meet you. And one of the things I mentioned to you when I reached out to you at first, was that you bring so much joy to my social media feed. So it’s especially nice to have you on the show, to bring some joy to everyone who’s listening, to their lives today.
Jen: Thank you, I appreciate it.
Lauren: So let’s start from the very beginning. Can you tell us when and how you got diagnosed, and what you’ve done to manage the way that you feel and move through the world every day?
Jen: I’ve been in placements like hospitals and residential schools since I was 15.
So I don’t even know at what point I was diagnosed, because a lot of times they wouldn’t talk to me about my own stuff.
Lauren: Do you think that’s because they presumed that you wouldn’t get it? Which is ridiculous, really.
Jen: Yeah. They never would tell me in detail about my own stuff. So I really wasn’t aware till, I think it might have been my family or something, told me.
Lauren: It sounds like you were a teenager, though, when you became aware.
Jen: No, I was older. I was even older. I was an adult for sure. But I guess once I did find out, it got easier — because I didn’t hate myself so much. I thought it was just me being ridiculous. I was constantly misunderstanding people and misinterpreting people, and I’d get really upset. People would say something and I’d take it the wrong way. I didn’t understand their meaning, and I’d get upset and then everyone around me was, like, “What’s your problem??” I wasn’t very well received. And so, I didn’t like myself because I felt like … why am I like this? Why are you so stupid? Why are you so ridiculous?
Lauren: So it sounds like you felt you were really isolated and you didn’t have people around you that you could honestly communicate with … it felt like there was a disconnect in communication with a lot of the people around you?
Jen: With people I didn’t know. All my family I was fine with, because I was always with them. And they understood my quirks and things.
But I didn’t really have friends or people I could make connections with at that time.
And I had a lot of behavioral issues, too, from that, I believe.
Lauren: Well, I bet, because that’s the kind of thing, when you’re socially isolated as well and when you’re struggling to find people to understand you, of course, there are going to be emotional and physical reactions to that kind of reality.
Jen: Yeah, like I didn’t know how to get attention properly. And I didn’t know, when I was upset, how to talk about it. And I would just do other things to cope with everything.
Lauren: So you felt better because you felt like when you got diagnosed, you were able to actually understand yourself more, and understand the world around you in a more clear way. Is that right?
Jen: Definitely. Well, when I was made aware of my diagnosis!
Lauren: I should say … when you were made aware!
Jen: I knew what autism was, but I didn’t know a lot. I thought when you had autism, you couldn’t talk, and stuff. I wasn’t really aware that it was a spectrum so much. I started to realize, oh, that’s why everything is so confusing. And that’s why everything is too loud! It’s not me being picky or needing all this accommodation … it really is loud to me — and that’s valid. I started to realize that I wasn’t just being that way, or I wasn’t just being a picky or hard-to-be-around person.
Lauren: And do you think that once you were made aware of how your life was going to be affected, you were actually able to start finding community and finding others like you, and understanding the entire spectrum in a whole new way, too?
Jen: Yeah, I started to understand myself, but I really didn’t know a lot of people that had a similar diagnosis to me. I’m making more friends now that I’ve been doing what I’m doing, but I mostly was around your typical people — or whatever you would call it.
Lauren: You’re very good. You mentioned to me before we started the interview that you’re not picky about language, but it’s kind of hard to find the right words. So many of the words that we use around chronic illness and diagnoses have a negative connotation.
Jen: Yeah. So I just started to make more connections, I think, and people understood me more, too, when they kind of knew what was going on.
They were a little more patient, I think, a little more understanding of why I was having the problems I was having.
Lauren: And do you know where you are on the spectrum? Can you share that with us?
Jen: I don’t know. I know they have numbers, but I don’t know. I mean, I’m very high functioning. I know a lot of people don’t like that term either. I get along quite well, but I still have someone with me 24 hours a day where I live, because some things can get really hard. And then other things I’m really good and really fine at and I’m doing better than most people!
Lauren: What are some of those things? Can you talk to us about some of the things that you struggle with sometimes?
Jen: Definitely when I’m out in the world, in the community, I need to be with somebody — either my staff person or a family member or friend. If there’s a lot of people, I need to … for example, I went to Disney a few days ago.
Lauren: And that was a trip that was designed for a group of people with autism spectrum disorders.
Jen: Yes. My staff was with me; her name is Lindsay. And the way I navigated through Disney was to keep my hands on her shoulder. Because there’s just so many people, I felt so lost. And then I would just look down at my feet while we were walking through the sea of people.
I probably would have just frozen up if I didn’t have somebody to help me through that.
Lauren: But isn’t it great that you have someone to be with you in those situations, and to feel comfortable?
Jen: Yes, very.
Lauren: Especially at Disney, because it’s super fun! It’s really interesting, because, you know, I don’t love crowds either! Honestly, a lot of the time I don’t want to be alone in those situations, too. And how we react to stimulus in that way, it can be such a fine line, I guess, between this understanding of what autism is and how to exist in the world. It sounds like, though, pretty much as soon as you were aware of everything you really felt validated and gained self-acceptance pretty quickly. It doesn’t sound like it was as much of a struggle at that point for you, was it?
Jen: My behavior problems didn’t just go away. I still had to work really hard to control myself when I would have a feeling … because I would get these feelings to just run into the wall. I didn’t know where I was in space. And I would hit my head all the time. Or, if I felt energy inside, I didn’t know what to do. I would literally just run into stuff. It was really bad. It’s very much night and day between the way things worked for me and the way things are now.
Lauren: And have you talked to your doctors and come to understand why it was you were reacting in ways like that before? Or is it just really about behavior modification and understanding healthier ways, so that you don’t hurt yourself when you’re reacting to situations?
Jen: I think it was more like the staff I work with would help me. The one person I was with for years and years, she knew me so well that she would know before it would happen. She’d say, “Jen, I think it’s kind of loud and we should go outside, what do you think?”
She showed me how to figure it out for myself.
She would realize it before, and then tell me, and then I would be, like, oh, that’s how it feels before the bad thing happens. And I would start recognizing that feeling myself and not need her to tell me, do you know what I mean?
Lauren: Yeah, it’s really wonderful that you’ve been able to bridge the gap in your own understanding with the help of the people who’ve been with you throughout this journey. So it sounds like you had people who acted as advocates for you, who’ve enabled you to become your own advocate. How has that changed your relationship with yourself, as you’ve grown to not just acceptance, but being able to live in the world in your own way more comfortably?
Jen: My confidence is so much better. My self-esteem always was really bad. And now it’s much better. And I’m more sure of myself, I will take more chances now. Before, I would not go outside my routine. I would not eat at a restaurant where I didn’t know the menu; I would not go to a place where I wasn’t sure exactly what it would be like. I really restricted myself. And so once my confidence went up and my self-assurance that I could handle myself in a situation better, then I started to try more things. And then I started to really become my full potential self.
Lauren: It’s cool, because I find that having gotten to know you through social media, one of the things that you always do is, you’re always up for trying new things — and you find a lot of joy in that. Which is what makes it so nice to to follow your energy. And it’s exciting to watch you experience new things, because it’s a really great reminder to find that much joy in these different experiences, isn’t it.
Jen: Yeah, it used to be anxiety before an experience. I still get anxiety, but I also get excitement.
Lauren: They’re very closely related!
Jen: Yes. And I think one of the things I love to do on my channel on YouTube is to do a new thing — and then be honest about how I’m feeling. Before, during and after. I don’t just do the thing and say: “Oh, I did it.” I like to record my feelings about it so people can see, oh, she was nervous and anxious about it, so that’s okay to feel that way. And if they want to try something new, maybe they can see by my example … when I talk through It, you know.
Lauren: Yeah, absolutely. And especially because you have a more specific way of understanding the situation, from the perspective of someone who can be triggered by different stimuli. When those stimuli are too loud or too big. And I’m sure it’s really helpful for people especially, not only to understand what you’re going through, but also if they’re going through things like that themselves.
Lauren: So what does a typical day look like for you? How do you go through the day as you’re managing not getting yourself in situations that are too uncomfortable, and yet trying to challenge yourself?
Jen: Well, I always plan my week coming up. Right now, where I live, we have vocational time during the day where we’ll get paid for that time. So right now, I’m working outside of the facility. I actually work in the community. I’ve been helping my church do different things in their office. They will tell me, “Oh, we need your help with this on Wednesday.” So I’ll make my schedule. And then I’ll schedule my other things — acting classes coming up, and everything. And then I’ll schedule it out so I know every day what I’ve got the next day, and I just kind of go for whatever it is that day.
But sometimes there’s a wrench thrown in the plan. And that’s really hard.
Lauren: You addressed that when you were going to Disney World, didn’t you … about how you guys nearly didn’t make it out of the parking lot? So how do you manage your reaction to those situations?
Jen: It used to be really bad, and a lot of times I would lose out on the opportunity, because there was a wrench thrown and I would lose control of myself before I even got to do the thing. I kind of learned … maybe sometimes there’s a wrench in the plan. But it doesn’t mean the plan is canceled, it’s just changed. I had to learn that. My mom says I think black and white — either it’s all or nothing. Either it’s a yes or no; it’s not like, well, we could modify this. That’s never in my mind. I used to just go all the way, with “It’s ruined! It’s over! We can’t do it!” When really there might be another way around … if I just breathe for a minute, maybe we can think of a way to solve it.
Lauren: So how have you learned those coping strategies? Are you in an assisted living facility right now, where you’re getting help, as you’re learning to manage your own reactions?
Jen: Yes. I don’t get formal class or anything. But when I’m with my staff, they know me well, so they’ll know when I’m getting upset about something that got changed. And they’ll say, “Hey, Jen, we’ll figure it out. We’ll do this, or we’ll call so-and-so.” So they help me through it and they remind me to just be calm. They really help me. And then the more I do it with their help, the more I can kind of do it on my own.
Lauren: Absolutely. Well, you’ve become so independent, which is so exciting. You’re really living such a full life, and always finding joy. I mean, you’re like the happiest person on my feed! So have you been in situations where maybe someone didn’t understand what was going on with you, and you had to justify to them that you needed special treatment for something … or that you had a specific reaction to stimulus … where someone just really didn’t get what was going on?
Jen: I’m sure I have, but I don’t know if I really realized it.
I’m sure there are people that get annoyed with me, or lose patience.
But I think sometimes I don’t realize it. So I just kind of go on my merry way! Honestly, I don’t feel like I’ve ever had to be, like, “Well this is why …” and explain something to them. Some things have happened sometimes in the community, and my staff will go up to the desk and say, “Hey, you know, it’s really loud. Can you maybe turn that down?” They kind of advocate for me in a situation. I’ve never really had to do it myself, I guess. Because someone’s always with me. So that would probably be my take on that.
Lauren: What about your engagement with the community? What have you learned about living with autism from the other people who you’ve met who are like you?
Jen: I’ve learned that everybody’s really different from each other. One person with autism might love loud music, another one might hate it. So I learned that everybody’s really different, but that sometimes you kind of have this connection — because you just know, you just kind of know what the other one’s going through.
Lauren: Well, and it’s even as you mentioned earlier on … some people are nonverbal, some people are highly functioning, which is certainly controversial! You might be able to have conversations with words, but sometimes you have conversations in other ways. And it sounds like you’ve definitely made friends within the community, too.
Jen: Yes. Some of my friends … I don’t know if I can say the name of the channels, but …
Lauren: Yes, please … let’s give everyone a plug!
Jen: FatheringAutism … I’ve been hanging out with him for a while.
Lauren: Asa’s great.
Jen: Yeah, Asa’s awesome. I met him last year and we became good friends. Lauren Brazee I’m very close with. And so I met Abby and even though Abby is not verbal, we kinda touch hands and I just felt like a connection … I just kind of understood. We were both at Playlist Live and there were people everywhere, and I was, like, “I know, Abby, I know.” We know each other, and Lauren says that I remind her so much of her daughter — just some of the things I do in person, and stuff. We actually have a lot in common; we like things that light up. She had never told me any of this, but she was, like, “Oh my goodness, so does Ellen! So does Ellen!” That’s like my Mini-Me friend! (laughs)
Lauren: That’s so nice. It’s so great that you’ve been able to connect not just with other people who are living with autism, but also with their caregivers. And be able to take part in the community in that way.
Jen: Somebody had mentioned on one of my comments sections when I went to Disney with them, that I kind of completed the circle of the group. Because there were the kids with autism. There were parents and caregivers. But I’m an adult, so I’m on the level with the parents because I’m an adult. But then also I have autism like the kids.
It’s kind of like connecting to the circle, our group. Which I thought was a good observation.
Lauren: Yeah, it’s really great. And I think that’s one of the things that makes you so unique, too, is that you really are bridging the gap in that way. And you’re also willing to engage with lots of different kinds of people. And that’s really huge, especially when you’re coming from being triggered by things like that in the past. I know you said that you haven’t really been in situations where you’ve been forced to explain to people what was going on with you mentally. But do you feel like you’ve ever experienced undue prejudice or even privilege in the system — where people, because of your circumstances, have thought, ‘Well, gee, she’s getting taken care of.’ Or, that people are looking at you differently because of the way that you move through the world. Do you think that you’ve ever had an experience like that?
Jen: I don’t know, I think, definitely not to my face! But I’m sure behind my back. And I don’t care, Lauren! I used to care. But now I’m, like … as long as you don’t say it to me, I don’t care what your prejudices are. I don’t care. As long as you’re treating me right, and respectfully, and not harming me. Honestly, everybody has prejudices; it’s kind of human nature. It’s the way we survive, because we have to make a judgment sometimes … and sometimes people will make the wrong judgments about a group. The only thing I would say I’ve experienced prejudice with, is when I go to the doctor.
Jen: Almost all of them. If my staff comes in with me, they will speak to my staff … not even look at me, not even attempt to talk to me! Ask them what’s going on, or once we’re done with the exam or whatever it was, tell them what the next step is or what they think is going on. The staff I was telling you about that I had for years … she used to get so mad.
This is what she literally said to one doctor, “Talk to her. She’s probably smarter than you!”
Lauren: That’s awesome! (laughs)
Jen: But it was very warranted because he was really patronizing me, just trying to talk over me and not even talking to me. And I thought that was really funny. So I kind of circumvent that by telling my staff, “Look, just wait outside and that way they’re forced to talk to me.” And once we talk for a little bit, they’re, like, “Okay, this will work.” But I definitely feel bad for people that maybe aren’t as verbal as me, and are being ignored at appointments; are not taken seriously because they think that that person doesn’t understand their illness or their symptoms. It’s super frustrating. And still to this day, it’s one of the things I fight. Where I live, sometimes this hurts or I’ve had broken fingers and they’re, like, “Oh, you’re fine.” And my family has to call and say, “Look, Jennifer’s really in pain.” So I’ve experienced a lot of medical issues.
Lauren: So that’s something where doctors could definitely be more aware in general, right? Talk to your patients!
Jen: Talk to your patients, no matter what you think their level is. And take them seriously. Just because they have a disability doesn’t mean that their complaint is not valid, or they’re not really in pain, or they’re not really there. A lot of times they think you’re just having a behavior issue, that maybe you’re just having some sort of tension, or you just don’t understand what pain really is. I’m telling you, I’ve been to some doctors, and it’s been bad. And I really would like to express that.
Lauren: I think that’s a really fair thing to talk about. I want to ask you about the healthcare system, and your experience in it. It sounds like, for sure, you’ve had those adverse experiences where doctors haven’t taken you seriously. Have there been experiences that have been positive in the system, that have worked — in your opinion and in your experience?
Jen: Well, yeah, I’ve had doctors who totally listen to me. Actually just a few months ago, I went to the doctor for stomach issues. And she must have asked me questions for 30 minutes! And really, really took everything I said seriously. She sent me for tests, and sure enough, my gallbladder was not functioning.
And if she hadn’t listened to me, I would still be suffering with that.
And I’ve also found that the younger doctors seem to be listening more. When I go to an older doctor, I think they’re just in a different mindset sometimes. I’m not being age-ist or anything! Just sayin’!
Lauren: (laughs) There may be differences in the way they were trained?
Jen: The way they’re trained, that’s exactly what I was going to say. I think the training is getting better, because I’ve noticed some of the doctors I’ve gone to that are younger or maybe interns or something … they kind of listen more. And I think they’re starting to maybe train better for that.
Lauren: Yeah, maybe younger doctors are more curious and more willing to engage with patients, right? So tell us about your advocacy work. Tell us about your YouTube channels and everything that you’ve been doing. We want to hear all about it.
Jen: Okay, so, Rebranding Autism is my channel. It just started actually because I used to just make piano videos all the time –because I’m a musician. And then one day, I reached 1000 subscribers or something, and I made a video telling my viewers thank you. And they were, like, “We like it when you talk! We like your voice and we like it when you talk! Talk more!” Because I never used to talk; just set up the camera, play the song, and turn it off.
So I was like this mystery girl.
Lauren: Yeah, they were missing the best part of you!
Jen: So I thought, oh, maybe I will make a video. So I started just doing little skits and things. And that kind of led to me talking about my life. And then I got more organized and I said, maybe I will talk about what I’ve been through. Because I have a really unique story and, I think, perspective. Because I’m on the other side of it now. It’s not like I’ve just been living with my family this whole time and had autism. I have been through it — state hospitals, residential schools, horrible treatments for behavior, and strong medications. I have just been through it all. So I felt like I could help people, because I really understand all the parts of it now that I’m on the other side. So that’s really what I’m doing.
Lauren: I think it’s so exciting. So you’ve got your YouTube channel. You’ve got your Instagram, which is how I found you. What other social media channels?
Jen: Facebook, Rebranding Autism. Actually I really like it, because I can interact a lot on a daily basis, do polls. I’ve been doing this ‘Choose My Adventure’ thing now. I’ll let people make a choice if I can’t decide. Or, I’ll just throw two choices up there and I’ll do the thing. I played a song today that you told me you liked, Sweet Caroline. That was a poll on my Facebook this morning. I was, like, “Do you want me to play Sweet Caroline or Sweet Home Alabama?” And they voted for Sweet Caroline. So I literally sat down and learned it, and then posted it. It was really fun. People were, like, “Whoa!” They got what they wanted. So it’s really fun to engage with people on Facebook.
Lauren: That’s something where social media is really connecting you to an even bigger community. You must feel pretty great about being on social media and living in a world where we have access to that, right?
Jen: When I first started doing my videos, I was terrible at talking on camera and coming up with things to say. And YouTube has been therapeutic for me, because I think I’ve become much more well spoken and fluent in the way I say things. It’s actually helped me, and the fact that I can reach the world — even though I’m in this little town, in a facility — but I can reach literally reach around the world is just amazing.
So I’m not limited because of my situation anymore.
Lauren: Yeah, or because of location. So when you do the ‘Choose My Adventure’, is it always music that people are choosing, or are they also sending you new places?
Jen: Well, I actually just started it. I came up with the idea. I was at the Sugar Factory, and I couldn’t decide between two shakes. So, I thought, we’ll just let the people decide! And I did it, and they picked my shake. So, I was, like, this is really fun because I’m always talking about trying new things. So why don’t I let my viewers be part of me trying new things and let them feel like they can be a part of the decisions? And it’s a little more challenging for me, because I have to think, all right, they’re gonna pick and maybe it’s not gonna be the one I was leaning towards, and I’ll have to try that thing anyway. So I think I’m going to keep doing it with music. And definitely when I’m out in the world … like, make a decision for me, “Should I do this, or this?” I’ll start even doing, “Should I go here, or there? Should I visit this theme park, or this theme park next?” I’ll keep doing it with all those things.
Lauren: That’s so great. And it’s a great way to keep you developing your own skills as you’re being confronted by the world. So, you mentioned that you’re on the other side of it. Can you tell us a little more about the backstory, and about some of these perhaps darker experiences leading up to the wonderful place that you are in now?
Jen: It was really bad. I have to say, it was really dark for years. When I was growing up … I was living at home till I was 15. But I remember back when I was in second grade when my tic started and when the OCD started; I was just severely depressed and anxious all the time. And my mom was always trying to figure out what was going on with me. I did not know how to say it at all. So it was just all a secret inside of me.
Lauren: Now you have the words to be able to say, that’s depression, and that’s anxiety.
Jen: Right. I didn’t know. And I thought I was the only person in the whole world …
Lauren: I don’t think anyone knows what it is until someone tells them.
Jen: Yeah, and I thought I was crazy and that I was the only one, so I didn’t want to tell anybody because it was just ridiculous.
I had these obsessions and I would just try and hide them.
I didn’t know anybody else that did those things. And then at the age of 15, I had really been deteriorating. Middle School was okay. But in high school, it just got really bad. And that’s when I was first placed in hospitals. I was in psychiatric hospitals, and when you go into a psychiatric hospital, they’ll just medicate you right away, not really trying to figure things out. So I was on heavy medications . I mean, you name it, I was on it. It was a mess. I had gained so much weight, I was just sleeping all the time. It was bad. But the epitome of the dark time was when I went to … I don’t want to say the name of the facility … but it’s the only place in the United States that uses electric skin shock to modify your behavior.
Lauren: That’s a therapy that’s considered very outdated at this point.
Jen: Yeah. And it’s not like the ECT (Electroconvulsive Therapy) they do on the brain; it’s not that at all. It’s actually a completely different thing, where they put electrodes on your arms and legs and other places, and it’ll shock you to purposely hurt you to modify your behavior. So you’ll have a list of things and the staff will just sit there and watch for those things.
Lauren: It’s pretty barbaric.
Jen: Yeah, it could be tensing your body, waving my hands in front of my face … any little thing, they would put on there. And it was shocking me for seven years.
Lauren: Seven years?
Jen: Seven years, I went through that treatment. I was so terrified all the time, sick to my stomach all the time. I was really, really skinny. You could see my ribs. I wasn’t eating. It was terrible. And so finally, long story short, because they had taken guardianship of me and everything, my family was able to get guardianship back and they got me out of here. That’s why I was there. Everyone says, “Why didn’t your family do something??” Because they legally couldn’t; I was under guardianship. So It’s really important, I want to just say … if you are having medical or mental issues and you need a guardian or you want a guardian … make sure you pick someone you trust before the courts pick someone for you. That’s something I really would like people to know, if you are in that situation. Really, make sure that’s taken care of — because that’s what happened to me, and that’s why I couldn’t escape where I was.
Lauren: And did you go undergo any trauma therapy after this experience, to process everything?
Yeah, when I left and came to my new place, I started having nightmares … terrible nightmares where I relived it, every single night, every single night.
And that’s been going on … I’ve been here for 10 years. So literally for 10 years, every night. My staff tell me, “Jen, you were yelling in your sleep; you were crying.” I did go to therapy — but it didn’t help. I didn’t find it helpful. I don’t really like “talk talking” … it just doesn’t help me. I’d rather just talk to my friends and make jokes. I don’t really like to just sit there and talk about everything that’s bothering me! Actually, I know a lot of people would probably … I don’t know what they believe … but I actually have been praying to God to heal me of these nightmares. And actually I was healed, and my nightmares stopped on the way, and I’ve done so much better. That’s just recently, in the past couple of months — but I was suffering for a long time.
Lauren: But what’s amazing is that it sounds like you found what worked for you, and you made the adjustments you needed to do that. Prayer worked for you. Maybe talk therapy would work for someone else and that’s a service that’s available where you are. But you found the thing that works for you, and that’s wonderful. And look at this joy that you’re able to share with other people! I just think you’re so exceptional — because for one person to contain so much happiness and to be able to share it with other people … that’s already amazing. But you’re also doing it while spreading awareness of autism and mental health disorders and all different kinds of experiences. And it’s so important for people to know that, and to know what rights they have. It’s really great. You’re very lucky to be where you are. But also it sounds like you’re really well taken care of and like things have worked out the way they were meant to.
Jen: Yes, definitely blessed. I’m a happy person. Everybody’s different, and some people are just more mellow and don’t show their excitement as much. But my mom said … and I remember doing this ever since I was little, once I could talk … she would wake me up in the morning and I would say, “Mom, today’s gonna be a good day.” She said I always said that that in the morning; she says I was just always a really happy person.
Lauren: A positive person.
Jen: Yeah, that’s just been the way I was programmed.
Lauren: It’s a good default!
Jen: It’s my natural self. I’m not trying to be this joyful person or portray this joyful person.
Lauren: No, it’s how you are.
Jen: I’ve got joy in my heart, I’ve got God in my heart — that’s really just the way I am now.
Of course I have bad days; I get sad, I get mad. You know, like everybody else.
And I’ll get depressed sometimes. But I think that by default, I’m a joyful person.
Lauren: Well, you’ve also found ways to cope when you’re having a low day or when you’re having an angry day. You have a lot of activities, I presume, that you turn to that you’re, like … this makes me feel better.
Jen: Yeah, definitely.
Lauren: So I like to wrap up my interviews with a couple of Top Three lists. I’m wondering if you could give us your top three tips for someone … maybe they’ve already been diagnosed with autism. Maybe they think something’s going on and they haven’t been diagnosed. Or they’re feeling confused or afraid. Maybe they’re in a bad living situation. What would you recommend for people in that kind of situation? What would your top three tips be?
Jen: Hmm, you asked me a tough question, Lauren! (laughs)
Lauren: I know! That’s my job! (laughs) You’ve given us some great tips already.
Jen: I think the first thing is … whether you’ve been diagnosed or you haven’t been diagnosed, if you’re having symptoms of something or you have something that’s ongoing that you really have issue with … to not hate yourself for it. Whether you have autism or not, or you’re just sensitive.
Whatever the reason is, don’t beat yourself up and hate yourself for your quirks and your intricacies.
I think that’s the first thing I would say — to just accept your flaws and things. Everyone has flaws. So don’t hate yourself for that.
Lauren: That you’re not alone in having …
Jen: Yeah, no matter what craziness you think you’re going through, someone else feels like that, too. You’re not the only one who’s probably having those thoughts or doing that weird action or ritual, or whatever you’re doing. And people do understand. Even if your family doesn’t understand, or your friends. There are definitely people out there that understand. So now with the terrible and wonderful Internet, you can find your corner of the world; you can find a group of people that you can probably relate to.
Lauren: Yeah, definitely. That is an awesome tip. Do you have more? I feel like that answers every question possible!
Jen: One more tip, I would say … find ways to enjoy life, even in your situation. Find something you can do — you have permission to have fun. You don’t always have to be miserable, or thinking, oh this is what’s wrong with me. Just find time to be a human and to do nice things. Every morning I make my coffee like it’s Starbucks; I treat myself. I put whipped cream and cinnamon, I make it look pretty.
Lauren: Will you come and make my coffee??
Jen: It’s just an experience that I give to myself every day. Little things like that. Treat yourself well.
Lauren: Yeah, treat yourself! You started touching on this … but, Top Three things that give you unbridled joy, that you’re totally unwilling to compromise on — whether it’s your Starbucks in the morning, it could be comfort activities, it could even be guilty pleasures. Anything that just gives you super amounts of joy that you want to share with everyone.
Jen: Hmm. Well, definitely my first one would be my faith in God —because it’s very important to me. It’s very much a part of me. Second, would have to be music. Because I’m a musician; I just want to play music all the time on the piano, sing, play guitar. So I couldn’t lose that; I couldn’t compromise on music. And I’ll have to say my third thing would be … just spending quiet time in my house with my dog!
Because when everything’s going crazy, I’m, like, ‘I just want to hug Lemonade and sit on my couch.’
Yeah, that would be my third thing, just that quiet time when I’m home and I’ll just hug my dog.
Lauren: That’s so great. I love that. And is there anything else that you’d like to add that you haven’t shared with us yet today?
Jen: I just wanted to share something my mom told me once, that kind of changed my whole way of thinking. And that is, we were in the grocery store and it was busy. And every time I got in front of somebody, I would say, “Oh, I’m sorry, I’m sorry, I’m sorry.” I was just dodging and apologizing. My mom got so sick of it. She said, “Jennifer, you have a right to be in this world as much as anyone else. You don’t need to apologize for taking up your own space.” And that hit me, right then and there. And I would like to pass that on to other people, because that was one of the most wise and awesome things she ever said to me — and she’s a wise lady. That was way up there. I just want other people to know that you have a right to be in this world as much as anyone else; you have a place in this world. So don’t apologize and don’t think you’re less than, or ‘That’s not for me.’ It’s just as much as anyone else. It doesn’t matter if it’s Kim Kardashian and you … you are just as important and just as valuable!
Lauren: I think that’s so beautiful. And last but not least, tell us where everyone can find you so they can follow you.
Jen: You can find me at Rebranding Autism on YouTube and Facebook and Instagram. I have two Instagrams, but it’s just easier to say Rebranding Autism on all of them. And also my music is Jen Msumba Music, and you can find that on Facebook and YouTube as well.
Lauren: Jen, it has been such an honor to talk to you. You’re such a light. Not just in your community, but in this whole world, in all the communities. It’s just so wonderful to soak up some of your wisdom today, and your mom did right! You’re just a really wonderful person. Thank you so much for being on the show.
Jen: Thank you, and you’re welcome, Lauren.