The Autism in Black Podcast is hosted by Maria Davis-Pierre, LMHC and focuses on all things autism and the black parent experience. Our goal is to educate, support, and empower black parents to advocate not only for their children but themselves as well.
Today we are joined by Joy Johnson who is a behavior specialist, inclusion specialist, autism advocate, and is actually autistic. Joy shares her experience of growing up autistic and how she got into the ABA field. She talks about having those hard conversations with your child and how there are certain considerations that should be thought about when having these conversations. Joy also talks about how parents can avoid ableism and treating their adult children their age. She talks about the importance of ABA, especially from a cultural standpoint. She also talks about how the white narrative of autism impacts the black autistic community. And how important it is to help your child navigate adulthood.
Resources mentioned
Instagram: @joyfjohnson
Website: www.joyfjohnson.com
Hashtags you can follow to interact with the black actually autistic community:
#blackandautisitic
#autisiticblackpride
#autisticadult
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The official hashtag for the podcast is #aibpod
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Join the Autism in Black Podcast Community – here
For more information and other valuable resources, make sure to visit the website at www.autisminblack.org
Introduction
Maria Davis-Pierre:
Hello, and welcome to the Autism and Black Podcasts. I’m Maria Davis-Pierre. A Licensed Mental Health Counselor in the State of Florida. And America’s number one, autism advocate for black parents. I am the founder and CEO of Autism in Black Inc., where we aim to include the excluded. Today, we have Joy Johnson on the show. Joy is a behavior specialist, inclusion specialist and autism advocate, who partners with organizations, individuals, and families to improve the lives of those impacted by autism. After spending years working in clinical settings, nonprofits and schools, Joy knows how to truly serve and represent the ASD community members in various contexts. In addition to her extensive professional experiences, Joy is also diagnosed with autism herself. Joy holds a Master in Education and Master in Psychology and is currently a PhD candidate. I’m really excited about having Joy on the show. Not only to talk about her experiences as a black autistic female, but to talk about the importance of ABA from a cultural standpoint and why we as black community members need to think about ABA as options for our children. Enjoy today’s show.
Episode
Maria Davis-Pierre:
Hi, and welcome to another episode of the Autism in Black Podcast. We have a very special guest today. We have Joy with us, Joy Johnson. She is amazing, and I’m so happy we connected and I’m happy she’s here on the podcast today. So I’ve already read your bio Joy. Can you tell us a bit more about who you are and what you do?
Joy Johnson:
First, thanks for having me. Second of all, I’m a behavior specialist and inclusion specialist and an autism advocate, but I’m also autistic as well.
Maria Davis-Pierre:
As a person who is autistic, you identify as autistic or a person with autism. So as autistic individual, who now is a BCPA. Tell us more about that. How did you get into the field of ABA?
Joy Johnson:
I was out of the country for a while and when I came back, I knew that I wanted to serve my population. I just didn’t know how at that point. So I started working with a place here that serves individuals with autism and they implemented ABA programs. And that was how I discovered ABA. And I immediately enrolled in a master course, specializing in ABA, as soon as I got back. And then I just started discovering more and more, and I implemented some strategies for myself and I was like, okay, I really liked this. And that’s how I got started.
Maria Davis-Pierre:
I love that. And as some of us know, there is a bit of a struggle with accepting ABA in the actually autistic community. Have you yourself dealt with any backlash from the autistic community about your career?
Joy Johnson:
I have, it’s always, well, it was ongoing debates. I just don’t participate in it anymore because it’s just having a conversation with something that’s just not an argument is not going to be one because it’s a lack of education on their behalf. Its terms of what ABA truly is and how it should be implemented ethically. If it’s implemented ethically, then we’re always okay. But some of them are under the impression that is abusive because ABA is trying to teach us to be typical, which is not the goal of ABA. So it’s just the lack of information within our community. And I’m also, that’s another reason why I wanted to get involved to disseminate more information. So parents are aware that, you know, it’s not of use when done ethically and to be somebody on the spectrum that represents us. As practicing ABA helps regulate from hand. So that was another reason why I wanted to get involved.
Maria Davis-Pierre:
I have to say, when we got connected and you stated that you were a behavior specialist, I myself was shocked. I was like, oh my gosh, especially knowing about how the autistic community feels about ABA. So for parents who are struggling with that struggle of seeing what is said in the actually autistic community, but then you, yourself being actually autistic and a person who is involved with ABA therapy. What advice you have for parents to look for when they’re going to enroll their children in ABA therapy?
Joy Johnson:
Just make sure your therapist or the organization you’re dealing with aligns with your values as a parent, and do a lot of research as to what truly is socially significant. A lot of times parents want to target behaviors that look odd, and that is conforming to like neuro-typical standards. If the behavior simply looks up, but doesn’t truly impact the individual’s quality of life, then it’s not something that should be necessarily targeted in therapy. We’re really trying to focus on improving that person’s quality of life. So when you’re thinking about targeting and goals for your kid, if they’ve simply flat which is a form of self-stimulatory behavior stimming but it doesn’t disrupt anybody. It doesn’t hurt them and themselves. This is not something that you want to exhaust your resources and time in terms of a therapy. You want to target goals, such as functional communication, social goals, executive functioning, those types of things, things that truly impact how your quality of life is going to be.
Because truth be told the biggest thing with them, the actually autistic community is neuro-typical standard stimming. Stimming for us, since we input that we need. if you do have to target that because it is harmful or disruptive or, self-injurious, you still want to find a replacement behavior that provides us with a sensory input. It’s all about replacement behaviors and ABA. So, it was just look for somebody who is truly interested in improving your child’s quality of life and not just trying to make them look as though they’re the norm of what society the mold that society has a structured.
Maria Davis-Pierre:
Yes. I love that. And I want to backtrack a little bit to talk about you and your journey and being an autistic individual. What age were you diagnosed with autism?
Joy Johnson:
I was diagnosed at six and I was always aware, but it was something that I was told not to really talk about or really disclose, you know, I’m 43 years old. So back in my time, it was something that might’ve put a negative stigma on me. I really started having issues though related to it when I was around 12 and it was in my behaviors. I had a lot of maladaptive, so to speak behaviors and a lot of problems socializing with my peers. So when I was 12 is when really started impacting my life.
Maria Davis-Pierre:
You said that you were aware of it at six. Did your parents have that conversation with you that you are autistic?
Joy Johnson:
I don’t think that a conversation really occurred at six. Because I don’t really grasp the concept, but around 12 is when we really started talking about it. And then I started seeing more therapists and getting treatment. So my mother had no choice, but to really talk to me about it, my mother is a psychologist, but again, she’s old school. So it was kind of like we know, you know, and I knew, but you don’t need to tell your friends, you don’t need to tell your friends’ kids. I went to a very fluent school. I went to University of Chicago laboratory school. So it’s there was a lot of people that were asking there, but none of us really talked about it, but it’s kind of like known now for having that type of kid there.
Maria Davis-Pierre:
That’s interesting. And as a therapist myself, I know one of the things that I do think about is having that conversation with my seven year old daughter. When the time is right, when she can grasp and understand. What advice do you have for parents who are trying to have that conversation with their kids that you are autistic and everybody’s different, but your differences include this?
Joy Johnson:
The thing that I really appreciate about nowadays, my parents they did the best that they could as far as they thought they were protecting me from not really telling me to talk about it, but now I think the younger as your child can understand, you need to start having that conversation. And I think it’s good that they talk about it with their peers, because the more people know the easier it is to keep promoting acceptance in neuro diversity. Because the fact that’s no big deal. That’s just Joy. She has autism. She explained why she flaps. So the more you’re armed with self-awareness the easier it is for you to navigate through disclosing it to your employees and stuff in the future because it’s like, hey, you know, I have autism, but it’s no big deal. Might have impact me in this way. And I think having constant conversations with your children and checking in with them. You feel like anything is impacting you right now or would you like to discuss anything about it because we were very like, you know, why do I do this? I always would look at myself like why can’t I do you know, what the rest of my friends are doing? And I think if my mother would have had more conversations with me. It’s not that you can’t do it maybe you’re perceiving as differently. I would have had more self-realization and been able to realize my potentials a lot earlier than I did.
Maria Davis-Pierre:
I love that especially around the conversation of you thinking about why you can’t do certain things. And I think as parents we do try to shield our children as a mother from certain things. We think that we are protecting them, but sometimes it does cause hurt and pain rather than just having the upfront conversation about this is what it is. And even though it looks like this we can turn it around and reframe it to be best for you. You said that at 12 you started having maladaptive behaviors. Can you explain that for the audience who may not know what maladaptive behaviors are?
Joy Johnson:
In my case it was a lot of attention seeking behavior. I did not know how to elicit attention from my peers. So I realized really quickly what looked like deviance probably to society, like rebellious behavior how I would receive attention from my peers. Because I really didn’t know how to fit in socially with them. But doing that, I was like, oh, she’s like a bad ass. And so I got negative attention, but I was just seeking attention. I also was very self-interest. I do have sensory processing disorder, in addition to autism, but I also I think a lot of my frustrations, what kind of just build up, I would do a lot of headbanging, just a lot of self-injurious like inflicting harm upon myself. I just didn’t know why was I doing this? My peers weren’t doing this. So, that just lid and then actually later on, because I think it’s really important that parents think about this too. When I was around, I want to say like 17, I became sexually active earlier in life. And I think that was also a way that I was like masking because it allowed me to feel accepted, like by my peers and be popular.
Maria Davis-Pierre:
I actually never thought of that. Even having a girl myself, it makes sense that sex is a way to get the attention seeking for yourself, even though your partner may not be feeling the same thing as you. Your feeling wanted in that moment and feeling this is what I need in that moment.
Joy Johnson:
Right. And it was the only way that I felt like I could truly engage. I really felt like I had a connection to my peers and I didn’t even really enjoy sex because of my sensory processing disorder, but it was something that I felt like I could gain acceptance, particularly of course from boys, even from girls though, because it was like something I could talk about to make it seem like I was this girl that was doing all of this stuff, but it, it really wasn’t something that I enjoyed. So I think again, if I had more awareness of what was going on with myself, I would have known this is not the way to get attention. There are other ways that I can get attention. And those are the types of conversations that you have to have with your children as well. If you realize that they’re trying to fit in, it’s like, okay, let’s find people that enjoy doing the same special interests as you, and I could have engaged with those people and found special groups or something instead of doing the things that I was doing.
Maria Davis-Pierre:
But you know that brings up a good point of having that conversation about sex with your child. I think for a lot of parents that I have engaged with, they have said that they don’t know how to have the conversation with their child. And a lot of them don’t even want to think about their child having sex because they are autistic as if they just are not going to have sex. And I’m like that doesn’t make sense.
Joy Johnson:
And I mean, that’s something that I also think that we need to talk to our children about too, as they’re becoming adults, like when they get around 17, 18 and going to college, it’s a reality of something that may happen. And with me, I engaged, I said, I started early and I continue to engage in sex during adulthood and did not enjoy it because I was not really aware of my sensory processing issues. So I have some things that are really aversive to me. So in order to have a healthy sex life, like moving forward into marriage, you need to be comfortable enough with yourself and have already engaged in these conversations. You find certain types of sensory aversive. So you need to have that conversation with your partner going into serious relationships in marriage and you need to be comfortable doing that. So you need to discuss those things. Like it’s something that you have to talk about a healthy relationship when it comes to everything including sex has given and taken, it’s only fair that you have to discuss certain sensory needs that you may have that may be different from your neuro-typical peers that are engaged in it.
Maria Davis-Pierre:
That is really helpful to me. And I’m writing this down. As a mother who tries to have a shame-free sex environment for my children and have open conversations with them. I never thought about having me sensory conversation with them.
Joy Johnson:
Because it can be traumatic. For me, it was actually very traumatic and I did not enjoy it until I got married. And then we sat down and we had conversations and he’s like, Oh, okay. So we, I mean, it took some experimentation without getting explicit. You’re not going to discover different things that meet my sensory needs while accommodating his as well. And 20 years later, it’s fine. You know, like what may be considered weird or whatever. It’s not weird when it’s, when it’s an intimacy between you and your partner if you’re going to be mature enough to engage in sex, which is what I tell my children, you have to be mature enough to have these conversations.
Maria Davis-Pierre:
Yeah. I love that. And I’m glad you’re being so open on this show because as parents and as a neurotypical parent, that’s not something that I have even fathom that I would have to talk to her about the sensory aspect of sex. Because that, for me, that’s not something that I deal with. So that thank you for that.
Joy Johnson:
Well, during adolescence and puberty, you have to think about that. Because your child may begin to masturbate. That’s like a real, a lot of my clients and I’m talking about girls too. They start to do that. And what it is another secret, a sensory seeking thing. So they discovered this feeling that they can touch themselves and they become hyper sexual conduct. So when you have a kid, especially a kid that’s not vocal or verbal, it may have problems, communicating when they hit puberty, you want to discuss with them when is it appropriate to masturbate.
Make sure they’re not doing it inappropriately and proper materials because I’ve seen kids try to put things, places that can’t go places, you know? So you have to have. I’ve even made social stories for children about in your room. And I always tell my kids, because I have some kids that engage in those behaviors or have in public. And I’m like, okay, there’s private hands and there’s public hands. So that’s my thing. I always tell private hands are in your room behind closed doors, public hands, you don’t do that in public. Without denying them that because that’s a natural thing for adolescents. It just may look different for your child with autism. And you have to understand that, but just telling them they can’t do it at all. I wouldn’t recommend that.
Maria Davis-Pierre:
As a therapist I wouldn’t recommend that either. That is just not going to help. And I think parents think by saying, no, no, no, we’re not going to discuss it that it’s not going to happen, but it’s not happening for them as parents when their children are out here getting misinformation and then engaging in things that they don’t even want to do because they weren’t given the proper information at home.
Joy Johnson:
Right.
Maria Davis-Pierre:
And then, what about explaining consent to your child for themselves and for others?
Joy Johnson:
It’s how people always talking about the personal space and it’s forming it in the same type of context, depending on how they can comprehend it, but it’s like you have to ask permission. You can’t just touch people without their permission. Because your body is your body, their body is their body. And you have to really be careful with explaining to them, consent and all these other things, but also for the people that may have children that they may retain guardianship of over adulthood. You also have to think about giving your child the opportunity to engage in relationships as well, because they are adults and a lot of times people think, oh, they’re autistic. You know they just sit in the house. No, they need to find some social groups and find some, there’s a way to regulate everything and allow them to have the most fruitful lab they can within their limits. But even if your child is like non vocal that doesn’t mean they don’t want to have a companion or be in a relationship.
Maria Davis-Pierre:
I love that. It is actually a form of ableism that parents don’t realize that they’re doing. Because they think that their child doesn’t want it, but they haven’t even asked their child if that’s something that they want.
Joy Johnson:
Yeah. I mean, it’s gone very deep for me. I’ve also heard people like, oh, he said he’s gay, but he don’t know if he’s gay. It’s just like, you can’t deny a person’s sexual orientation or whatever they choose, you going to allow them to have that same freedom to experiment as you would any other child. But not saying I let them go run wild. You explain to them and try to do it in a way that safe of course, but you have to listen to your child just because we have autism, it doesn’t mean we don’t know what we like and dislike.
Maria Davis-Pierre:
Yes. I agree. Being a black autistic you had to deal with any struggles being a black autistic woman?
Joy Johnson:
Yeah. I feel like that right now that narrative is all white women. And the weird thing is, well, statistically, mostly males that are diagnosed with autism, but that’s like controlled by white women. And it’s like white, angry women.
Maria Davis-Pierre:
I’m here for the honesty. I love it.
Joy Johnson:
I mean, that’s just my perspective, And, I know it’s a sensitive subject, but it’s also white people who have the privilege engaging in maladaptive behaviors. Like I described publicly. And I feel like in America, because I live in America, black people don’t have that privilege. You can’t have your 15 year old son hitting people or hitting himself in public because the police can see that, you know, as, Oh, he’s doing some type of weird antisocial behavior and the next thing you know, he’s arrested.
Maria Davis-Pierre:
Yeah.
Joy Johnson:
So part of my problem with these white women that are disseminated information about not getting therapy is… I’m praying that my black parents think closely about how that impacts us socially. We need therapy and a lot of these white women are not impacted to the point of like my clients. I wouldn’t say that I’m impacted severely. But I do have clients that are… and it’s not fair to try to control the narrative from somebody who only needs a little bit of support. One is those of us out there that need a lot. I think that it actually makes me sad because I feel like it makes it seem that’s perpetuating the stereotype that we only care about ourselves. And so the people with autism level one, or Asperger’s are only thinking about, oh, let me, you know, be wild and free, but what about the people who meet there. For you therapy might be an option, but that’s not always the case. And especially in the black community and especially for a black male, like you cannot have a black male out in public just doing whatever he pleases. And it’s not about conformance and typical norms. It’s about living in healthy and productive life and being productive citizen. You can’t just walk around doing whatever you want. You have to learn how to conform. I don’t care who you want. No, we just have rules as a society period.
Maria Davis-Pierre:
Especially for those of us in the black community. And I hope my black parents are really taking in what joyous saying. How we operate as black individuals in society is always been different. And listening to the actual autistic community, you have to still take that into consideration for your child being in society and how people are going to view them, especially the police, because these are times in a society that’s very dangerous for us as black.
Joy Johnson:
And that brings me to diagnosis because I meet a lot of black parents who sometimes feel like it’ll be a hindrance to be black and having, you know, disability, but that opens up resources. And then it lets you know, that you can get assessments and find out what you need to treat. If you just ignore it, it’s not going to go away. If you just ignore it, it could be a deficit that is confused as a deviance and they can end up in legal trouble. If they do get in some type of trouble like at school and stuff, you have the autism diagnosis as a consideration that authorities have to take into account like, okay, this person has autism. They may not have perceived this, but without all of that, you just unfortunately just another black man is out there wilding out.
Maria Davis-Pierre:
Well, I had never been given diagnosis such as oppositional defiant or emotionally disturbed behavior, diagnosis that then set them up for the school to prison pipeline.
Joy Johnson:
Yup. And I see that a lot. I’m in Baltimore and I see that a lot out here and it’s very unfortunate, and it’s very sad, but with the resources that’ll help your child, you realize their full potential. All you gotta do is get some therapist, stay consistent, and make sure your child knows how to advocate for themselves. You know how to advocate and you can work through it, but don’t do it as a hindrance. And it can be a blessing in many ways. It’s a lot of strengths that come along with having autism as well. But people just don’t understand. We can be some of the best employees that you’ve ever had. You know, we have focus and concentration on things that people consider menial sometimes. So you gotta think about that.
Maria Davis-Pierre:
Thank you for that. With you being actually autistic and then being in the ABA field. Do you think that has helped you with your career and working with individuals who are also autistic?
Joy Johnson:
It can, it depends on the parent. I have had parents that are like, oh my gosh, you have autism. How can you help my autistic child? And then I have some parents that are like, that’s great because you can see it from the perspective, as they see it and they appreciate it a whole lot more because they’re like, okay, you relate to my child, which I do. It’s truly a passion and almost an obligation that I feel like I have a voice. I was blessed enough to be able to pursue the education that I want and I want to help my people in every way that I can.
Maria Davis-Pierre:
I love that. And how did you deal with those who do give you the negative backlash when trying to do your job?
Joy Johnson:
Well, so far my experiences I wasn’t ever fired immediately, it was kind of like, oh, we’ll see. And they quickly realized that, okay. You know, like, just because she has autism, that doesn’t impact her ability to give therapy, but then I also feel like that lets them see, maybe you’re not realizing your child’s full potential because you thought that because I had autism, I couldn’t do this. So maybe you have some preconceived biases that you don’t even realize with your own. I put these limitations on them and don’t ever limit us. It just takes some time, sometimes delayed doesn’t mean that it will never happen. It’s just slower.
Maria Davis-Pierre:
Yeah. I love that because even for those of us who are neurotypical things don’t happen just right then. So why can’t we give the same grace to individuals who do have disabilities. Boggles my mind that as a society, we give all the grace to people who don’t have disabilities, but then those who have disabilities, especially ones that are not seeing, we don’t give the grace to.
Joy Johnson:
Right. I mean, I would say never give up. I love working with adults. I dropped out of high school. I was having a lot of problems, just really confused, so I didn’t graduate. I didn’t get a GED until I was 26. And it took a lot for me to do it. But then after that, I got two graduate degrees. I’m in the PhD program now. It was a slow progression but I was able to do it just because I had the support system, like my husband was always like, you can do this. So, you just have to be consistent and you keep trying it.
Maria Davis-Pierre:
And that brings up a good point for me about your support system. How important is it to have a support system?
Joy Johnson:
I think it’s detrimental. And for me, I just really, really fortunate to have a husband. He’s neuro-typical, but he’s very understanding and patient, which is another thing that I want to bring up to parents. Opportunity to engage in relationships. Having a girl, typical peer that I live with is like the best resource ever for me. And I really I’ve been married since I was 20. And I feel I developed so much being married more than I did in my teenage years because he was able to model behavior and helped me. So family members and society period, a lot of times when we turned 21, a lot of the support just dropped. And so, especially in the black community, I would love if I saw more of us like rally around, like we have black agencies, that it kind of uplift us.
Joy Johnson:
I see some other communities doing it and I’m like, this is what I want for us. I want us to have that type of resource to where from zero to 80, we have support. Because it’s really like after 21, if you have a severe, if you don’t have like autism level two or three, like if you’re not a severely impacted, you really don’t have a whole lot of resources and you still need support. So just remember parents, when they’re 21, that doesn’t mean it’s over. That could be mean it’s just beginning.
Maria Davis-Pierre:
So that’s a good, real point though. Because I mean, especially in the black community when you turn 18, you on your own, you’ve got to go figure out life where a lot of other cultures rally around until they get married and go on and then start their own family. And I think it’s so important, especially for children who have disabilities, especially ones that may not seem as extreme as others. You still have to rally around them and help them navigate through this because being turning 21 and navigating adulthood, that’s a tricky situation. Even for me as a, that was a very hard thing. I was like, oh, this is real pain. Real. This is real out here. They will cut my lights off. So we had to make sure that portion of life is, is taken care of as well as, as navigating and helping them through because it is very real when you turn 21 and you’re like, okay, you’re an adult and you’re black and you are a black woman or a black male in society as an adult, it’s different for us. And you have to make sure that you are preparing and navigating your child through that phase.
Joy Johnson:
I feel like the expectation for me was she’s probably not going to accomplish much. And that’s it. And I didn’t really start really getting into myself until I said, like 26. But I felt it was like, oh, she’ll just probably end up poor, because what else am I going to do without a high school diploma? And I had a child by the time I was 17. So it was like, life is over, she’s disabled. She got the kid. It’s over.
Maria Davis-Pierre:
Yeah. How did we navigate parenthood at a young age? And then, being actually autistic?
Joy Johnson:
Well, that’s why I say you really need to talk to your kids about today. It was really, really, really difficult. You know, like I just didn’t know what was going on. And my 25 year old, which is my oldest child is autistic as well. And I didn’t recognize it because I was autistic. So it looked normal to me. It was like a lot, a lot once. I got married and my husband’s family is like the black Chicago, really close family, really started helping me with stuff. And I will say, that’s what I love about the black community. They might not always acknowledge your disability, but it’s kind of like, we don’t care. What’s wrong with you, you to learn how to do this. Once I’m married to his family and he never really cared, but he was really, really, people always call him the baby mama.
Because I don’t have the innate maternal instincts. They just don’t come like naturally. And I had to train myself. And that’s another topic that I am very concerned about in the black community, especially because a lot of us will lose custody of our kids if we don’t have support, just because we have a diagnosis like quicker than a drug addict. Because they feel you have an intellectual disability or disability, you can’t raise your child. So when…
Maria Davis-Pierre:
You are teaching me today, look, mom having autistic daughter. I’m needing all this stuff.
Joy Johnson:
It happens way more than people think. They find out you have a diagnosis, they put you on a neuro-typical learning environment. The parents in class expects you to learn from six weeks. You don’t learn your child is going to get taken away.
And it happens quicker. Like they give a drug addict more opportunity and chance than they do somebody with a disability. And it happens a lot. Think about how many people in lower social economic situations that are living in public housing and some guy gets them pregnant so they can get a part of their disability check. I saw a lot living in New York, one by one, I watched one person’s, children just get taken away child after child, you because a lot of times we have kids with disabilities too. So, it’s the sad thing. So again, support, getting treatment and diagnosis. Because a lot of these people, I’m not sure if they even have formal diagnosis but they were able to assess that they have some type of cognitive disability.
Maria Davis-Pierre:
I love that. So what is next for you?
Joy Johnson:
I am working on my PhD and I want to get involved in research that impacts clinical decisions. So I want to involve at main the autistic population in more clinical decisions. As far as what I talked about earlier, targeting things that are not socially significant. So I plan on design, some survey model type research methods that will survey us. So we can have our input within clinical decisions because socially significant means what society deems appropriate. And we’re a part of society, but currently we’re not reflected in data. And so I want us to be reflected in data so people can see like, okay, this really doesn’t impact their quality of life. Matter of fact, they might benefit, or vice versa. So we’re more involved in treatment decisions and we’ll have more buy in for receiving ABA in therapy. People are not so like, oh, don’t do therapy. They try to make us neuro-typical if we’re more involved and we have more of a voice in treatment decisions, I think that will, that’ll help us in the long run as far as receiving treatment.
Maria Davis-Pierre:
Do you have any resources that you recommend for parents, caregivers or healthcare professionals that could be listening today?
Joy Johnson:
Other autistic people. I really think a lot of these agencies and organizations, I’m not saying they’re not good, because some of them have been really good, but it’s just like a really case by case, depending on your region, depending on how much exposure they’ve had to other people with autism. So, try to develop relationships with other people and other adults who have been impacted, but have overcome some of these challenges. And so listen to them for like advice on what they can think in your area, because I’m only in one particular area of the world. So there’s always like small organizations of us put together that maybe you can reach out to and learn from them.
Maria Davis-Pierre:
And parents I really can’t stress enough how important that is especially if you’re a neurotypical parent, because there’s things that we don’t think about just as Joy has enlightened me to so much that I actually do need to teach Malia. It’s so good to have somebody who understands what your child is going through or will be going through. So, make sure you take up that opportunity. If you have the chance to find somebody who is actually autistic, that you can go and have them, mentor your child or talk to your child about things that you wouldn’t even think that you needed to talk to your child about.
Joy Johnson:
I agree.
Maria Davis-Pierre:
Now, where can those listening find you?
Joy Johnson:
I’m on Instagram as Joy F. Johnson. I have a website joyfjohnson.com and you can reach out to me on either one of those. I can be in contact with. I can do a lot of virtual work too. So if you want to reach out to another autistic person, I’m always going to be that person, just find me on either of those places.
Maria Davis-Pierre:
And we will have all of Joy’s information and the resources that she talks about in the show notes. I cannot thank you enough for being on this episode. And I do want you back on another episode and I hope that you will bless us and grace us with your wisdom and inspiring us as parents to do something different with our children. So thank you for being here.
Joy Johnson:
Thank you. I appreciate it.
Maria Davis-Pierre:
And thank you all for listening and we’ll catch you on another episode of the Autism in Black podcast.