55: How to Parent Like an Autistic | Kelly Bron Johnson

Mothers of Misfits Podcast Episode 55

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Summary:

Kelly Bron Johnson is an Autistic and Hard of Hearing self-advocate, speaker, author, and founder of Completely Inclusive and the Autistic Entrepreneurs Network. She and Emily hold nothing back as they talk about miscarriages, adoption, autism, inclusion, mental health, and schooling.

Quotes:
  • “My biggest advice for anybody who wants to foster or adopt is the advice that I received from another adoptive mom is patience, persistence, and politeness.” – Kelly Bron Johnson
  • “Well, I’m not really fine. It gave me answers and it gave me an identity and it helped me understand myself. But I wasn’t fine. I was still very anxious and still didn’t really know how to deal with a lot of it.” – Kelly Bron Johnson
  • “I think everybody needs breaks. I think everybody needs an accommodation to some extent in terms of how they’re going to learn and where they’re going to learn.” – Kelly Bron Johnson
  • “Mothers of Misfits is all about really busting the myth that there’s a one size fits all solution and with our kids and how they learn and how they operate in environments in which they thrive. It’s not one size fits all.” – Emily Melious
  • “It turned out I actually have a very high IQ. I’ve got a borderline genius IQ which my eldest son shares. And I’m realizing the impacts of that now on my work in the sense that I had to hide my intelligence as well, because when I was to intelligent I got made fun of being too intelligent.” – Kelly Bron Johnson
Highlights:
  • 1:38 – Kelly’s story
  • 4:36 – Being diagnosed with autism
  • 9:34 – Dealing with Autism in schools
  • 11:53 – Long-term consequences of seclusion and restraint practices in school
  • 18:35 – The child protective system in Canada
  • 21:32 – Get in touch with Kelly
View Full Transcript

[00:00:00] Mothers of Misfits: Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.

[00:00:17] Emily Melious: Hey everyone. Welcome back to the Mothers of Misfits podcast. We are in store for another great conversation with Kelly Bron Johnson. But really quick before we get into the interview today, I want to share with you some exciting news. I’ve got two things to talk about. First, we just celebrated our first birthday as a podcast! And in the podcasting world, that’s a pretty big deal.

[00:00:41] So we’re so excited and I know we can’t do it without you. Just so excited we reached that milestone. And second, I just found out that Mothers of Misfits ranks in the top 10% of all podcasts in the world. Again, this is because of you. Because you are faithful, loyal listeners, and I can’t tell you how much we just appreciate you coming back every week and supporting the Mothers and Misfits community.

[00:01:10] So with that said, we do have another great conversation today with Kelly Bron Johnson. She is an autistic and hard of hearing self advocate, speaker, and author of How to Parent Like an Autistic. She also founded Completely Inclusive and the Autistic Entrepreneurs Network. I just found out she too is a boy mom, and her kiddos are 11 and five. Kelly, thank you for coming on.

[00:01:36] Kelly Johnson: Thanks so much for having me.

[00:01:38] Emily Melious: So let’s start out with your family. Tell us the story of your family and how your family came together.

[00:01:44] Kelly Johnson: So yeah, having a family was not an easy path or easy journey, I guess, for us. I had three miscarriages before we had our first son.  I very much strongly relate to the infertility community and I try to support other moms or other parents to be on this journey.

[00:02:02] I just relate to that community a lot. I find there’s a lot of support there and a lot of love and a lot of hope at the same time. So yeah, I had three miscarriages and then we had our miracle baby, and yeah, very lucky to have him. And so after that pregnancy, I was like, I don’t want to be pregnant again. I had such a high chance of having repeated miscarriages that I’m like, I can’t do this again. I got lucky, I got this one, and I can’t do it again. I just can’t emotionally deal with that loss. So we put ourselves on the wait list for adoption. And I called, and she goes, whenever we’re going to call you. That’s what she said. She’s like, we’re never going to call you, it’s not going to happen, nobody gets to adopt babies, blah, blah, blah, blah, blah.  I insisted basically on being put on the wait list, even though they said they weren’t going to call. And it’s interesting because, after we did actually get placed and were able to adopt. I had other friends who would say, well I tried and I had done the same thing, but they just accepted it.

[00:02:55] Like they accepted the no, kind of thing. Or as, I think social services puts a lot of barriers, like tests almost. And my biggest advice for anybody who wants to foster or adopt is, the advice that I received from another adoptive mom, is patience, persistence, and politeness. And you need those three things.

[00:03:16] I’m not going to say it’s going to happen, but I just remember my three P’s, always remember my three P’s. That they’re going to put barriers in the way, there’s going to be all sorts of challenges in the way, but if you can remember patience, persistence, and politeness, there’s hope. So yeah, we adopted our second son, and we believe it’s possible that he has fetal alcohol syndrome, but we’re not a hundred percent sure.

[00:03:36] He’s still too young, really to be tested officially. He does have Apraxia and a morphosyntax disorder. But that’s kind of a par for the course in our home. My oldest son is autistic with ADHD and also has Apraxia. So, I feel that I should have an honorary speech therapy degree right now.

[00:03:57] Emily Melious:  I bet.

[00:03:58] Kelly Johnson: But I also have a degree in linguistics, my BA is in linguistics. So, I could go and get my master’s in speech therapy. I just feel they should just give it to me though, I don’t feel like I should have to go through the schooling for it.

[00:04:08] Emily Melious: You’ve put in the hours.

[00:04:09] Kelly Johnson: Certainly yes, I’ve done a complete practicum with two cases. 

[00:04:13] Emily Melious: Well, for all of those colleges who are listening today, award Kelly her honorary degree. Yeah, wow, what an amazing story. And I can’t wait to see this continue to unfold for your family and how lucky are they to have you as their mom because, you’re experiencing it too and actually I’d like to turn to your personal story.

[00:04:36] You were late diagnosed with autism. You are a black woman, and I’d like to hear from you what factors you believe caused your diagnosis to be missed.

[00:04:47] Kelly Johnson:  I don’t think my case is unique. I think women in general, girls and women, are really overlooked or missed her diagnosis on a regular basis still to this day. And that’s because most of the research, the studies on testing are all done on boys, it’s done mostly on white boys.

[00:05:02] So there are definitely class issues, there are race issues, there are access issues, to why people are missing diagnosis. And it wasn’t vogue in by time. You know, I grew up in the eighties and they were able to kind of, not diagnose me, but peg me with every other possible label, like a picky eater, and fussy, and bossy, and introverted, and repress. I had all sorts of things that people, you know, said I was. But,  it wasn’t until after my son got diagnosed that I went for diagnosis. It’s interesting because I think I had a pretty open understanding of what autism was, but I hadn’t ,up until that point, started to really consider that that could be me.

[00:05:38] And it wasn’t until I read a book by Rudy Simone, I think it’s called something like everything your autistic partner wants you to know or something like that. And I picked up that book and I started reading it and I was like, oh my gosh, this is me. Like she wrote this book for me, it’s like 99% of this book is me.

[00:05:53] And I passed it over to my husband I’m like, oh my gosh, look at the scene. I was totally shocked.  I went for my diagnosis, and the unfortunate thing about going for diagnosis though is the fact that she was like yeah, you have these traits and you probably also have sensory processing disorder,  but you did good for yourself.

[00:06:09] You’re fine. You’ve got a husband, you’ve got kids, you’re fine, you’re fine. I was like, well, I’m not really fine. It gave me answers and it gave me an identity and it helped me understand myself, but I wasn’t fine. I was still very anxious and still didn’t really know how to deal with a lot of it.

[00:06:26] It didn’t give me tools basically to, deal with the challenges I was having.  

[00:06:30] Emily Melious: And the fact that you were successful in life in the doctor’s eyes meant that you’re good enough, right? We don’t need to mess with a good thing, but I mean how were you feeling in that moment? Somewhat helpless, or you said anxious about your future or what to do from here. And you had just gotten the diagnosis for your son not long before, right?

[00:06:48] So those are two big things to deal with at the same time.

[00:06:52] Kelly Johnson: I was also diagnosed with dysthymia, which is a chronic low level depression. Which I knew, I had gotten diagnosed with that when I was in my twenties and I kind of I forgot about it.  I’ve learned many ways to live my life in a way that I can work around.

[00:07:05] The depression, I guess, or the challenges. But I was still having anxiety attacks and things at work. And I didn’t realize until after my diagnosis, the anxiety attacks were caused by sensory overload and not being able to filter the information that was coming in. And also not really having a really deep body awareness of what was happening.

[00:07:25] So for example, I would be in the office and the office would be hot. And I’d be wearing like an extra sweater or something. But my body was not registering it as hot. It was, oh, we’re going to have an anxiety attack right now. I would have to sit and I’d be like, why am I freaking out at my desk? And then it’d be like, you know, my armpits, like I’m sweating.

[00:07:44] I’m just like, oh my gosh, and then I’m like, oh, it’s cause I’m hot. So most reasonable people will take off their sweater, or go take a walk. But I didn’t didn’t really clue in, I guess, so it was about kind of learning for me to be present. I had to remember to breathe, I had to remember to do these body scans, have some body awareness of, am I  cold, am I hot?

[00:08:03] What is it I’m feeling? So I can then emotionally regulate properly. So that was the skill to learn, that was something I had to learn with time.

[00:08:11] Yeah, that sounds likeEmily Melious:  a great takeaway for parents too, because no matter what unique challenges our kids might have, fostering that self-awareness is always a good thing. Particularly when, you know, they’re processing a lot of intense emotions all at once, giving them words and language and a process to calm down and breathe and reflect on what’s happening to them so that they can more productively, handle that situation. I mean, I know with my kids, my oldest in particular, he can just get totally overtaken. I mean, can’t we all, by emotions in a situation. And it’s so hard to see him go through that, but I love the process that you just outlined for yourself because it is a skill. You know, it’s not necessarily something that comes naturally, but it is something that we can learn to do and we can help our kids do the same.

[00:08:59] And I’m sure by you modeling that, you’re helping your boys to learn that behavior as well.  

[00:09:06] Kelly Johnson: Oh, yeah, it’s fantastic. I’ve learned a lot from him too, because eldest ended up going to a specialized school for autistic kids and they had these zones of regulation. I’m like, oh woah, I love the zones of regulation. Let’s do this check-in. And that’s it, you check in a few times a day, say, where am I at? Which zone am I in? There’s ways that we can learn from each other. It’s not the child’s responsibility to teach an adult emotional regulation, it’s the adult that needs to learn that. But there’s ways that we can learn from each other sometimes, we can borrow techniques that work.

[00:09:33] Emily Melious: Yeah. So since you mentioned that your son goes to a particular school, I’d really like to get your perspective on inclusion in schools. What are some of the issues particular to racialize disabled children that we should all be aware of?

[00:09:50] Kelly Johnson: So yeah, he has transitioned out of the specialized school, and now we’re homeschooling. We did try public school for some time and he was not happy. He was really not happy. And he was asking to be homeschooled even before the pandemic hit. So when it hit, then it was like, well here’s my excuse, let’s do it. But, you know, when it comes to access, I can say like this school is, one of the only schools in all of Canada that is specialized in working with autistic children.  It is the second only in our province in Quebec. There’s one that’s primarily French. Quebec is very French, so this school is bilingual luckily, but there is one that is French. But they have been accused of abuse  for secluding children in a closet.  Yeah, sorry, dark topic. Maybe we should have a trigger warning, but yeah, dark topic there. So there’s an issue of access, there’s an issue when it comes to inclusion, but there’s also issues with how the children are treated in schools in general. And seclusion and restraint are things that are legal still in Canada.

[00:10:48] It’s legal in many states in the U S. You know, in this prone restraint, we know is very dangerous. It’s dangerous in terms of life-threatening, but also just in the long-term trauma that people experience. And we know that children with, I’m going to say, behaviors in quotes, because that’s how it’s seen.

[00:11:05] So children with behaviors, and racialized children are usually the targets of seclusion and restraint in the schools.

[00:11:13] Emily Melious: I know that’s a hard topic, but it’s one we need to talk about, and this is the place to do it. I don’t know if you caught this episode, Kelly, but we had a previous guest, Jordyn Zimmerman. And she’s autistic, non-speaking, and she didn’t get a device to help her speak until she was, I believe, 18 years old.

[00:11:33] So she was regularly restrained in school. And listening to her story is so hard, but again, so necessary that we hear these stories so that we can, be the best advocates for our kids.  I would like to think there’s not, you know, malice going into those situations, but maybe just a misunderstanding. But what are some of the long-term consequences of seclusion and restraint practices in schools?

[00:11:59] Kelly Johnson: So we know that it causes trauma. So if it doesn’t cause death outright, because unfortunately the prolonged restraint is very dangerous and can cause death in students, and anybody actually in adults as well, we’ve seen that.   But, it does cause trauma in the child, and it causes trauma in the people who are actually doing the practice of the restraints.

[00:12:18] So it’s not something I think that we should be taking lightly or even the bystanders, even other children who witness this, it’s not a good environment, it’s not a healthy or safe environment. And then, you know, it causes, especially when we have certain school systems where police are allowed in, and we’re policing our children going to school who are just trying to get an education.

[00:12:37] And then there’s the school to prison pipeline, which would often encourages because the fact is, seclusion and restraint are not therapeutic approaches. They do not solve the problem. They do not get down to the underlying issue of why they were put in that situation in the first place. And so it just makes it worse, the same way that our prison systems often make people worse than when they came in.

[00:12:57] And so we’re setting up our children to fail. We’re not setting up our children with the skills that they need to succeed at all. And again, we know that because of biases, often racialized children are perceived to be bigger and stronger or more mature or older than they actually are, and this causes issues when it comes to authority figures. Punishing them more harshly than they would somebody who was not racialized.

[00:13:21] Is full inclusion always theEmily Melious:  goal, or are there children that have such troubling behaviors that they cannot be fully integrated?

[00:13:28] Kelly Johnson: I really believe that everybody can be integrated. I really do believe in this. That said, I do believe there are instances where it might be appropriate to have a more specialized class or a smaller class, or even sometimes, you know, I’ve seen cases where they work outside the class.

[00:13:47] I think everybody needs breaks. I think everybody needs an accommodation to some extent in terms of how they’re going to learn and where they’re going to learn. There might be some that are more kinesthetic. So they might learn better by running around the playground and yelling multiplication tables, right?

[00:13:59] That still might work. Or I’ve known some case, there was one mom, she was concerned her autistic child wasn’t learning to read. She was reading to him, but he was bouncing around the room. And I said, he’s still listening. He’s still listening to the story. He’s just bouncing around the room, but he still hears you,  believe me.   So yeah, I think there’s opportunities in the way that we’re going to structure our school day and what school might look like, but I do believe that we can have full inclusion for everybody.

[00:14:24] Emily Melious: And Mothers of Misfits is all about really busting the myth that there’s a one size fits all solution. And with our kids and how they learn and how they operate in the environments in which they thrive, it’s not one size fits all. And I love that you talk about, let’s figure out what works for each kid and it doesn’t always look the same.

[00:14:42] And then we can, develop these children into much more confident and self-aware and capable adults, because I can only imagine, I mean, I’m hearing you talk about the labels, and the negative descriptors that were used for you. Those were not positive descriptors, those were negative labels prior to your diagnosis. How did that impact your sense of self-worth and your confidence? There’s already some pretty sobering statistics for young women, adolescent girls, and what happens to their confidence in that middle school, high school time period. And it sounds like you had those extra challenges that were met with some unfair, or really negative, harsh explanations. How did that impact you?

[00:15:24] Kelly Johnson: Yeah, I’m still working on that right now. I still go to therapy. I’ve had a lot of self-confidence issues, because it didn’t just come from the school, it came from my family life. There were ways that my parents were accommodating and accepting of how I was, and there are ways that they were definitely not.   So, when I got my autism diagnosis, a few years after that, like I said I was still struggling, I was still having anxiety. I went to a different psychologist and he put me through a whole barrage of tests.

[00:15:51] And like he tested me for like personality disorders for, you know, everything. And it turned out I actually have a very high IQ. I’ve got a borderline genius IQ, which my eldest son shares And I’m realizing the impacts of that now on my work, in the sense that I had to hide my intelligence as well, because when I was too intelligent, I got made fun of being too intelligent.

[00:16:13] And I was just thinking about, I was in CEGEP. So CEGEP is kind of our pre college system here Quebec. I loved chemistry. I had a fantastic time in chemistry and I was there and the teacher’s asking questions and I’m raising my hand, I’m in the front of the class. And I’m like, oh pick me, you know? And nobody else was answering the questions. And my professor said, okay, give somebody else to turn now. Like you can stop. Like you know too much, so like, just stop. And I’m like, can you believe this? Like a man, is telling me to stop answering the questions correctly, in a class, in front of everybody, right? I’m too enthusiastic. I’m too knowledgeable. And so I internalize that and I kind of like, well, I’m going to shut down and I’m going to be quiet. And I’m not going to tell anybody that I’m smart because, obviously there’s repercussions if I do. And when I look back at it now, I’m like, you know, I should have just kept raising my hand.

[00:17:00] I should’ve just like, freaking just started yelling out the answers because it wasn’t the fact that I’m answering the questions right, that’s not a problem. If he’s asking questions and only one person in the class can answer, maybe there’s something with his teaching and maybe he might want to do something to help the rest of the class. 

[00:17:17] Emily Melious: Well you were an engaged learner. And by shutting you down, that caused you to, again, internalize that and also become disengaged. I mean, the complete opposite effect of what should be happening in that classroom.

[00:17:29] Kelly Johnson: So yeah, it’s affected me in my work in the sense where there are times when, you know, they’ll say, hey Kelly, can you do this? I’ll give you a five day deadline or something. And then I do it in like half a day. And I’m like, well, how could I have done it that fast? Maybe I missed something, maybe it’s wrong.

[00:17:44] Maybe I didn’t understand the, how could it be okay? And I started to realize, you know what, no. I’m actually efficient and I’m intelligent, so I just do things really super quickly, not everything, but some things, if I’m good at it, I will do it. And I don’t need to measure myself or doubt myself or don’t my abilities.

[00:17:59] I don’t need to measure by what other people might think, or how long it will take me to do something. So that’s been a work in progress. It’s still a lot of work. 

[00:18:07] Emily Melious: I’m sure, but I commend you. I mean, that’s incredible to come to that place where you say, I’m not going to doubt myself. I’m not going to second guess what works for me. And, I’m sure that took a long time and a lot of effort to get there. I want to circle back to where we started in this conversation, which is talking about your boys and particularly the adoption process with your younger son. As an adoptive parent to an indigenous child, can you speak a bit about the child protective system, and the number of indigenous children in care?

[00:18:39] Kelly Johnson: So we have a big problem in Canada. I don’t know the stats in the U.S., but I know that in Canada, I think our indigenous population only makes up I think about 4% of the population, but they make up something like 65% of the population in care.

[00:18:53] Emily Melious: Whoa, Whoa.

[00:18:56] Kelly Johnson: I hope that we’re moving on the right path in terms of reconciliation, and that the social services are starting to move towards a path where they are going to make systemic reform, and to allow for some healing to happen. But I keep seeing a lot of the same issues over and over again. So I mean, for us, like we’re an interracial couple, my husband is white.

[00:19:18] And when we put ourselves on the list to adopt for local adoption, they said, well, oh, you’re a mixed couple, so you’ll get a mixed kid. And I’m like, well that makes sense cause, sure. We’re a mixed family,  makes sense. And they called us finally and they said, oh, well we’ve got a mom and she’s pregnant, but she’s a Inuk. And I was like, oh, well that’s a surprise, but okay. And I’m like, okay, we got to go on YouTube, we got to like Google everything. I mean, not that I had to learn everything about the Inuit but, you know, my father  luckily had worked up north for a period of time when I was a child, so I did have some personal experience with the north. So I wasn’t going into this completely blind. But yeah, I mean, transracial adoption is an issue. We have to really respect cultures, but the system. I had a lot of soul searching to do too, because I said, am I part of this system? Am I part of the problem?

[00:20:04] These children need to be going to other indigenous homes, if there’s nobody in their community care for them. I feel that I’ve kind of reconciled his story for ourselves. I am in contact with his biological mom and his dad. So that’s been healing for me. And so, I hope to build a relationship with that, that I hope can become healing for both parts of our family. But, I’ve always said that adoption is a bandaid solution.

[00:20:27] It’s not fixing all of society’s problems. The fact that his mom did not have access to adequate medical care, probably did not have access to things like birth control that would be easily access down here in the south, there’s a lot of things that failed her, for her to have to make that decision. She was not protected. She was not cared for in terms of society, in terms of the medical system. I’m not talking about her family, I’m talking about systemically, society has failed her. And so that’s the feminist issue for me, it’s something that’s very important as well.

[00:20:56] And I want to be part of the healing process. I want to do something that can turn this around. Because we do know that it’s a lot of the children who are apprehended, it’s racially motivated. It’s not really good reasons. And a lot of the times when they are taken, let’s say, if they’re taken from a home that they say is not sanitation wise, it’s not adequate or whatever.

[00:21:17] That’s the cause of the government not providing adequate things like running water or proper housing, and things like that. So big issue. 

[00:21:25] Emily Melious: Well I admire you because you are doing your part. Kelly, if folks want to get in touch with you, learn more about you and your story, how can they best do that?.

[00:21:34] Kelly Johnson: So I am very active on LinkedIn, it is one of my favorite places to be. I have a whole bunch of different websites for all the different projects I’m doing. What I actually started doing is I made one big landing page, and it’s Kbronjohn.club  And that’s from Clubhouse. I put some freebies there, some resources for people that they can download. Things about accommodations in the workplace, things about talking to your child about their diagnosis. So that’s all there at Kbronjohn.club.

[00:22:01] Emily Melious: Awesome. And we will make sure to include that on your episode page. And if you haven’t already, make sure to sign up for the episode insiders where you get inside information about all the guests. And my favorite thing is, you also get family photos and you get a little deeper dive into their family story, which is so cool.

[00:22:19] Kelly, thank you so very much for coming on today. I just appreciate your openness and your honesty about all parts of your story and your family’s story. Thanks again.

[00:22:28] Thank you so much.

[00:22:30] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.

Resources:

Speakers:

Emily Melious

Emily Melious

Talent Management Consultant | Career Coach | Podcast Host

HOST
Kelly Bron Johnson

Kelly Bron Johnson

Autistic & Hard of Hearing Advocate | Speaker | Author, How to Parent Like an Autistic | Mom

GUEST

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