Episode #30 is here: Trissa, An Autistic Parent Raising Neurodivergent Children.
Today, I’m speaking with Trissa, an autistic parent with ADHD based in Washington State. Trissa talks about ways to regulate yourself as a neurodivergent parent and give your neurodivergent children ways to self-regulate.
Trissa’s helpful tips and suggestions are particularly useful for autistic, ADHDer, and otherwise neurodivergent parents of children who are both dealing with sensory and cognitive overload.
Find out some of the best strategies for neurodivergent parents and kids who are dealing with the ongoing possibility of burnout and meltdown at the same time.
“She would melt down and then it would send me into a meltdown, and because I wasn’t thinking about how to regulate myself and what I needed to remain calm, we would cycle together frequently.” —Trissa
Watch this episode on YouTube.
Check out Trissa’s TikTok
And the Embrace Autism website mentioned in this episode
Transcript
Kristen Hovet: 1:06
Hey everyone and welcome back to The Other Autism podcast. I’m really excited to show you, or to play for you, this conversation. So a few days ago I spoke with Trissa, an autistic parent with ADHD based in Washington state.
But before I share our conversation, I’d like to apologize for the long break you may have noticed if you’re a listener or a watcher of this podcast. So a lot’s been going on for me. My last semester of my master’s program started up in September. I’m working on my final manuscript and I’d say it’s taking up most of my spare time these days. So if you’re wondering where I’ve been, that’s the main thing. I only have a few weeks left in my program. Then I’ll have my master’s degree, so it’s all worth it. But you know it’s been a lot and I started this degree in early 2021. So I’m ready for it to be over. I’m ready to just chill, which by chill means working and podcasting and everything else.
So, anyway, other things that have been happening: Toby the cat was in the animal hospital for four nights. He had a bowel obstruction that appeared to be caused by inflammation. They looked and looked and they couldn’t find any actual object, so it looked like he just had some kind of viral or bacterial infection that caused inflammation and then it just kind of made things stop up. He was in a lot of pain. It was really hard, it was really sad to watch him go through that. He’s never been sick. I’ve had him for five years and since he was a rescue kitten he’s never been that sick. He’s never been really even sick other than under the weather, a couple of days here or there. So it was really really hard to watch him go through that. It was hard to have him away from me. Like, apart from going on some vacations here and there throughout the years, I really he’s been by my side this whole time. So I had trouble sleeping, I had trouble just adjusting to life on my own for the most part without little meow meow running around for four days. So it was really hard. It was also sad because he didn’t get the chance to wear his Halloween costume that he picked out. So I guess we’ll have to save that for next year. I was even hoping to post some pictures. Speaking of the devil. Hello, Mr. Minew! Really? That’s so cute, that’s a cute meow.
Anyway, also work. In other words, you know my full-time job has been, I would say next level busy. I was sick for a while and just all kinds of things going on, some really really good, some not so good. Other than that, you know, I can’t believe it’s already November, and then I keep seeing Toby whenever I glance over Hi Toby.
So the next announcement that’s super important. I need to thank four listeners Jen, Pepa, Nate, and Anonymous for your generous one-time shows of support to The Other Autism podcast. Jen, Pepa, Nate, and Anonymous used the Buy Me a Coffee link to send in one-time donations. If you find this podcast interesting or helpful in any way and would like to do the same, please check out the link in the show notes that says Buy Me a Coffee. For the price of a coffee, or two or three, you can help keep this podcast going and growing. I’d also like to thank the newest sponsor of The Other Autism podcast, Carolyne. Carolyne, I really appreciate your support, my friend. So a sponsor puts forward an amount, basically that they’re charged every month, usually three or five dollars, and that goes directly into supporting the podcast. For anyone else interested in becoming a sponsor, if you find this podcast meaningful to you and you want to help out, please check out the show notes for links that say Support the Show or Become a Supporter of the Show for as little as $3 a month.
I’d also like to announce that I’m changing the way the episodes are numbered. So until today, you’ve probably noticed, I’ve used the season and episode format, but I’d like to try just counting episodes the way I’ve seen some other podcasts do, and of course for most podcasts the seasons really are arbitrary. We just pick a season start and end that makes sense, but it doesn’t really follow any specific days or calendar whatever. So I just thought you know this is cool and then we can also see the counting of the episodes. So that means this episode is number 30. So hello and welcome to episode number 30. And with that, please say hello to my guest for today, Trissa.
Trissa: 6:31
My name is Trissa and I am a almost 43 year old late diagnosed autistic woman who also has ADHD. I am the mother of two children, one of whom I believe also has autism, although because we live in the state of Washington, it’s very hard to get a diagnosis and we’re working on that. And then I believe that my other child is not autistic, but I believe he likely has ADHD. I have been in the field of social work, although I will preface that by saying that in this field usually you’re only considered as having the title of social worker if you have an MSW, and I do not. I have a bachelor’s degree. However, I have worked on the ground in social work-ish type positions for the last 24 years of my life, and that experience has included work with CPS in a state that I don’t currently live in, but I was there for 12 years doing case management, investigations management, and then I currently run an early learning program for parents of young children. The personal experience I have as a late diagnosed neurodivergent person kind of rethinking their whole life as well as trying to parent a neurodivergent child, which is actually what got me down this road to believe that I might be neurodivergent in the first place, and then all the social work background that I have.
Kristen Hovet: 7:51
I know that you realized that you’re neurodivergent after your daughter was diagnosed. This was confirmed when you were diagnosed this past summer. So could you share a bit about when you first realized that and also like what was your first aha moment?
Seeking an Autism Diagnosis in a “Mental Health Desert” and My “Aha” Moments
Trissa: 8:04
My daughter actually hasn’t officially been diagnosed with autism. I want to give that caveat because we live in what I would call a very medical and mental health desert and Washington state has specific diagnostic criteria and only certain people can diagnose it. So she has been officially diagnosed with sensory processing disorder, selective mutism and anxiety, which, in my opinion, is essentially autism, and we are working with a psychiatrist who can’t give her an official diagnosis under Washington law, but believe she has an autism diagnosis.
But what was my aha moment for myself? So we spent two years during the pandemic, her behavior had really, my daughter’s behavior had really gotten pretty bad, and there was a moment where, quite literally, she almost died while having a meltdown. We were out hiking. This was about two and a half years ago, April of 2021. She had a meltdown and was literally 24 inches from the edge of a cliff that was over a raging river that had all the winter runoff and it was the scariest moment of my entire life. And she’d had some meltdowns before that, although I coded them at the time as fits, like that children are having fits, so she was six, almost seven, at the time. That was a real wake up call and so we started getting her into services and the next two years of trying to get her services was quite horrible, quite frankly. Some might say, well, you live near Seattle, but Seattle is almost three hours away from where I’m at. Spokane is also almost three hours away from where I’m at. I am in central Washington in a community of about 100,000 people, so it definitely does not have the resources that a lot of other areas do, which is why we are now seeking services outside of our area.
As I was exploring and trying to understand her needs, as I was doing research, as I was reading books, as I was watching or listening to podcasts, as I was watching TikTok videos, as I was watching YouTube videos, I don’t remember an exact aha moment, but I know that slowly I started thinking like I really think I might have autism. What I had to do, first and foremost, and I think this is true for a lot of people, is you have to come to understand, you have to get over the stereotypes that we have of people with autism. You have to sort of get past this image that you have in your mind of, like you know, a middle class white boy from the 90s who has outbursts and stuff like that. You have to, and I use that specific stereotype because I’ve worked with children like that, like that’s not just my, you know, that’s not just what I’ve been exposed to in media.
Again, I’ve worked in social work for 24 years. Both my mother and my sister are special education teachers. My sister actually was the primary teacher for a special education preschool at our local district for about three years, working with children with autism diagnoses. Additionally, there is ABA in the agency at which I work. You have this idea of what somebody with autism or someone who is neurodivergent is in your head, and the way I thought about myself did not in any way fit that stereotype. A lot of what that research was was informing myself, but also trying to understand, basically, this wasn’t conscious. It makes it sound like it was conscious, but it wasn’t conscious. Like I realize now, I was slowly overcoming and recognizing the stereotypes that I had of somebody with autism.
I will say, though, however, that my family has sort of unofficially diagnosed my dad with autism a long time ago, my mom, my sister and I, but I am a woman and I look very different than my dad does. There are some behaviors that overlap and I’m able to recognize them now. So what I thought for my entire life was really chronic depression and anxiety, very serious chronic depression and anxiety that I had to get treatment for on and off my entire life. I’ve actually been on a high level of, although my psychiatrist recently told me it wasn’t that high of a level, but I thought it was a high level of sertraline which is Zoloft for the last nine years.
So in the spring I really started to come to like, hey, I think, maybe. And I was watching a TikTok video of a woman who is a therapist in Canada and she’s neurodivergent and she actually provides a lot of counseling services for counselors. So that’s her primary work base. She has autistic children, but she mentioned Embrace Autism. It’s a very kind of fun and interactive website. They built that for neurodivergent people, I love it so much, where you could go and just test, and so her thing was you know, if you’re curious, go see. So one day at work I was like, let’s just see. I went on to their website and I believe they have four or five I don’t remember exactly, but four or five different autism tests that are like the standardized tests like the RAADS-R and I don’t remember what they all are off the top of my head, but you can go there and you can get a lot of those standardized tests. And so I took all of them and all of them put me on the scale as having autism, so much so that there are two main providers on that website because, like, they don’t just do the testing, but they will also do screenings where you send them information and they’ll kind of let you know what their thoughts are but also you can do a full evaluation. So the two doctors who run that website had their scores up for each of those tests and I scored higher than both of them, or maybe not higher, I scored, you know, in a more autistic range.
You know my background. I’ve been in social work but my degree was in psychology and I actually did a research method study while I was in school. So standardized tests sort of appeal to me in some ways. I don’t think that they’re the end all be all, but like they often sort of help me get over that skeptical piece that I have, you know, like where I believe what my gut is saying, but like this has been researched and it sort of just gives me that extra, you know that extra piece.
Telling My Family I Might Be Autistic
That was really where I had the aha moment and then I started talking with my family about it and my sister and my mom, like I mentioned, are special education teachers and they have worked with children who are diagnosed with autism their entire careers. You know, my mom currently works in a self-contained classroom for children who will not get regular high school diplomas. They, you know, for whatever reason, have usually it’s intellectual disabilities, but other disabilities as well. And so her association, again, her association with autism, my sister’s association with autism, is usually around people who also have intellectual disorders, because those are the easy ones to catch. So everybody in my family I kind of let everybody know, like I was, we were at dinner one day and it was my mom and my sister, and my partner was on board because he has sort of self diagnosed himself with autism and ADHD as well. My ex husband was there, the father of my two children, his wife, and I think again, like their response was really around those stereotypes that people have. But nobody was like, oh, no, no, no, no, no. Everybody was like, Well, you know, do what you need to do.
I actually ended up again because I am ever the skeptic, not necessarily of other people but of myself. I ended up doing a screening through Embrace Autism, and so what a screening looks like for them is that they have you do several more tests and then they send you out a questionnaire that’s pretty long, with I don’t know, I don’t recall how many questions, but you know 30, and I ended up writing back 25 pages of what I could remember going back into my early childhood. They can’t diagnose you with just that. Obviously you have to have a meeting, which they could do, but I wasn’t prepared to pay that extra amount, like I just wanted them to review based on kind of the testing and then what I had to say about myself. It wasn’t a diagnosis, but it came back saying that I fit all the criteria for, in their opinion, I would likely fit all the criteria for autism, and that they would strongly recommend that I seek out a full diagnosis.
Autism Confirmed! Now What About ADHD?
So I then went forward and found a psychiatrist in my state who accepts my insurance and who is pretty knowledgeable in autism, met with her a couple times and after the second meeting she was like, and I gave her that final report that I got from Embrace Autism, I gave her my 25 pages of writing. She was like, I don’t have any doubt that you have autism.
And she was like the only thing that I wonder is, if, do you have ADHD? And I was like, oh, I don’t, I really hadn’t thought about ADHD the way that I thought about autism. And so she had me do the I think it’s the Vanderbilt or one of the screenings for autism and she was like I want you to, when you do this, it was interesting how she sort of primed me for it, because she said I want you to, when you’re doing this, I want you to think about not just like what you DO, but what you WANT to do and what you STOP yourself from doing. And I was like, oh, that makes so much more sense. And so because when she primed me for that, I did it and I came out as having ADHD combined type, and I don’t think I would have had maybe either type if I had not been primed with a thinking about what you want to do and you stop yourself from doing. And I think that that’s so relevant and important because one of the questions on the Vanderbilt is like do you have a hard time sitting still in like meetings or in classrooms, or something like that. Not primed with that I would have said no, I don’t have any problem right, but primed with what I want to do?
Hell yeah, I have a hard time sitting in meetings and I have to force myself and I’m constantly doing something and I’m stimming in some way during every single meeting, you know what I’m saying, like whether it’s not visible, like nobody necessarily sees it, but I cannot sit still. I am always doing something unless I’m asleep. So that’s how I got to the point. I actually don’t have what Washington State would call a full diagnosis, meaning, like I, like under their DDA criteria, like I don’t have their disability criteria, I don’t have a full diagnosis. It would require going to a psychologist, but I don’t feel the need to do that. The diagnosis was really a lot more for me than it was for, you know, any sort of accommodations, although my workplace is lovely, I have a fantastic boss, I have a fantastic agency that I work for and they were perfectly okay taking the word of a nurse, a psychiatric nurse practitioner with a lot of experience. So I don’t really feel the need, you know, for a full diagnosis. I don’t need it for, you know, disability or accommodations. I’m privileged in that way.
So that’s kind of where I’m at. That’s how I got my diagnosis. That was my process. A lot of TikTok videos, a lot of YouTube videos, just listening to people talk about their lived experience and going, oh my God, that is exactly me, you know, laughing, like laughing almost crying, because you’re like, oh my God, like, that is absolutely me, like that is my experience.
Kristen Hovet: 19:13
It’s so validating.
Trissa: 19:15
And I thought I was crazy. Yes, exactly.
Kristen Hovet: 19:17
Yeah.
Trissa: 19:18
Like I thought I was a one off. No, turns out there’s a lot of us, but we just have learned not to talk about it because of judgment.
Kristen Hovet: 19:25
Exactly, yeah, so I have a question. I’ve just been writing notes here. This wasn’t in my list of questions, but I thought of it as you were speaking. How has your self concept changed since realizing that you’re autistic and that you have ADHD?
How My Self-Concept Has Changed After Recognizing I’m Autistic and Have ADHD
Trissa: 19:41
Yeah, I think the biggest way that my self concept has changed is giving myself so much more compassion and empathy. You know one of the things I joked about when the psychiatrist told me, yeah, I feel comfortable saying you fit the diagnostic criteria for autism and you fit the diagnostic criteria for ADHD. And actually she said she felt I met the diagnostic criteria for generalized anxiety on top of that. She was like, autistic people and people with ADHD also already have anxiety. She was like, but she asked me a lot of questions, like parsing out the anxiety and felt like, on top of what any sort of normal autistic person would have, like I have additional anxiety.
I think that through a lot of my life I haven’t given myself much compassion or empathy or space to be who I am. I think I have a lot of really negative tapes about you know, why can’t you do this? Why can’t you do that? Why is your house messy? Why can’t you get this done at work? Why can’t you do this? Why aren’t you a better mom? Why aren’t you this, why aren’t you that? And I always gave grace for other people. I always gave compassion and empathy for other people, because I see how hard it has been for me but that didn’t always translate back to myself. And so over the last you know it’s pushing about six months that I’ve been in this full discovery process. I mean really radically giving myself compassion and empathy and space to just be who I am, as I’m sure lots of late diagnosed people have, like just going back and thinking through so many memories and going, like you know, just even giving my younger self grace, but also trying to give myself, my younger self, the love that I wish I had given myself at the time, you know, like the care that I wish I’d given myself at the time.
I actually had a really interesting realization this past weekend, so you can see behind me, I love to craft and most of it is paper crafts, so I love scrapbooking. But one of the things that I do is I will get magazines, I’ll get art books, I’ll get gardening books and all sorts of other stuff, and stickers like this, you know, right here, this is the whole bin of stickers, you know, and I will cut stuff out of books like art, and then what I do is I collage it back into books. Feeling the glue on my hands and seeing and essentially like I believe it’s art, like it comes back together and makes something beautiful that I love, and I actually journal at the same time into the books. As I was cutting this weekend.
So my kids are with me 5050. Their dad and I split about two years ago this month actually but we have a good working co-parenting relationship, so we have the kids 5050. My kids are 9 and 11. I didn’t say that earlier, but they’re 9 and 11, and so last weekend wasn’t my weekend. The kids were with their dad and then my partner, he has a son and a stepson down in Tri-Cities, which is about an hour and a half away from where we’re at, and his ex was going downtown and was like, hey, why don’t you just come stay at the house? So I was partner-, kid-free for three days and it was, it was lovely. Just the animals like you’ve seen probably my dogs walking around in the back. So Saturday morning I’d planned on doing all sorts of stuff and instead I ended up going to, I was like, well, I’m just gonna stop in at JOANN’s and get something for my paper stuff, and they ended up having a whole bunch of new papercraft stuff that they haven’t had in the past, and so I was like, oh, this just derailed my entire day because I will be, I will be working with this stuff, and then, Yeah, JOANN’s Fabrics is its name.
Kristen Hovet: 23:11
Oh, okay.
My Newfound Self-Acceptance
Trissa: 23:12
Kind of like Michaels or Hobby Lobby. So then I went to, there’s a Goodwill two doors down and that is where I buy the books that I cut out, like I buy old art books or old craft books and they had a stack of magazines and I sat down on the ground and I, because they were five for a dollar and I pulled out 50 magazines like cooking magazines and other magazines that had great pictures in them, and then I went home and I spent like the next 12 hours just cutting out. Normally I would have hated myself for that, like if I had done that I would have hated, like, HATED myself. It would have sent me into this like depressive episode where I would have just been spiraling, you know, like why would you do that? You could have been doing x, y and z. You could have cleaned the house, you could have done this, you could have done that, like you could have gone out, you could have like. But because I’ve given myself that grace, like I was really happy, like I had a really great time just being with myself and listening to podcasts and watching some TV and just cutting things out of magazines and just being safe and comfortable in my space.
And I had this realization that when I was in my early 20s, so when I was probably like 21, 22 ish I must have been 20. I graduated with my bachelor’s degree when I was 21. I was working three quarters time and I was going to school full-time and I had actually gotten married, I was already married. I’d got married at 19 because I was raised in a very evangelical household and like that’s what you did. Yeah, so I’ve actually been divorced twice. So it was my high school sweetheart and I eventually had, like you know, sort of the normal like got married in the normal range.
So there was a time where I did something very similar where I was cutting stuff out of various things and gluing them in, and I would do that whenever I wasn’t doing homework or working and I didn’t really have much of a social life. So I ended up, after my divorce and I moved away and I started doing more of the traditional things that people my age did it, like going out and drinking and hanging out with friends, and I coded that time, I was like, oh, I must have been really depressed, like I might as well just, why does? Who cuts stuff out of paper? You know, who cuts out paper? Like who does that? Who does that? Like what is that? You know? And so for the whole of my 20s and 30s just coded that as you know, aberrant behavior, like I absolutely pathologized it.
And so the realization I had as I was like working with the paper this weekend is like, oh my god, this is, this is who I am. This is who I am, and I didn’t have the strength or the knowledge or the ability to provide compassion for myself enough to go, at the time, 20 years ago, 22, 23 years ago, to say, no, this is really okay and this is what I enjoy doing and this is my safe space. And it makes me just realize, like, how hard I pushed myself and how highly I masked through the whole of the rest of my 20s and 30s. You know, just masked through my 20s and 30s. It’s a really long way to answer your question of how I’ve gone back. I’ve gone back on so many of those things to rethink them.
Recognizing That I’m an Artist
Kristen Hovet: 26:15
I was thinking too while you were saying that, like, Who cuts out paper? Well, artists do. Creative people do.
Trissa: 26:24
Exactly and I think I didn’t code myself in that way. In the same way I didn’t code myself as autistic, you know what I’m saying? Like they’re kind of because I think that we discount artists in our culture. And it’s interesting, I actually made a TikTok recently, at the same time I was doing this I made a TikTok and was like so a lot of the books that I’m cutting out are quilting books, because I love having the patterns to then glue back into my books and the work that some of these people who crochet and quilt, I mean, they’re just, they are, they are art pieces. And at the same time I’m cutting out art books, like you know from the Louvre and from you know the Metropolitan Museum. And I had this realization, I was like we code what women do as crafts and we code what men do as art, but it’s still beautiful regardless. I think you’re right, that’s what artists do, yeah.
Kristen Hovet: 27:11
Definitely, and it takes an artist’s brain to put things together in a certain way, like not everyone can think of those things. So that’s to me, that’s an artist.
Trissa: 27:21
And that’s one of the things I’ve also come to realize is that, you know, my daughter’s psychiatrist had really compared my daughter to Temple Grandin, because my daughter has been inventing and the things she’s invented, the things that she creates. She has created the artworks, the structures she’s built, so she has, for example, magnet tiles and even at age four she could build these like insanely high structures that went up to your waist, could stay, were sturdy for days on end, you know. So her psychiatrist compared her and was like, hey, you need to go read some of the stuff that Temple Grandin has been doing lately around learning and how, like some people learn in words and some people learn in pictures.
Learning in Pictures in a World That Teaches Through Words
And I also had another aha moment, realized like, oh, I learn in pictures, I learn in pictures and I have been living in a world that teaches through words and I have had to translate that in my head and actually, interestingly, that’s leading to some work. So I manage a program where I have 15 staff and I’m onboarding new leadership staff right now and so it’s actually changed the way that I onboard my staff. I have created a lot more visuals for people who need to learn in visuals. It was really an aha moment for me around that. I’ve been talking with some people who are like technical assistants at the state level around the work that I do and saying like, hey, maybe we should really create an onboarding manual for new supervisors, but let’s really get some visual stuff in there, because I think I could have saved myself so much time in this learning process in doing this work if I’d had visuals.
Kristen Hovet: 28:48
When you reached out to me, you were talking about some challenges that neurodivergent parents have when parenting neurodivergent children. What have you found personally to be the most challenging in parenting?
The Biggest Challenges Being a Neurodivergent Parent of Neurodivergent Children
Trissa: 29:02
So I want to preface what I’m about to say is that I am saying it from my perspective. These are not things that I expose my daughter to, and I say that because I see a lot of parents of neurodivergent children or just parents who are raising children with mental health issues, really get beat up a lot online like, why aren’t you doing this, why aren’t you doing that? I’m gonna center myself as I answer my questions but know that it’s not how I parent, like these are not things that my daughter knows, these are things that I have internally processed, if that makes sense. So I just want to give that caveat.
So one of the biggest things is when she was having, so I mentioned the incident where she almost fell off the cliff and she ended up having many, many, many meltdowns. So I had enrolled her in some behavioral therapy and their recommendation to us was to ignore her behaviors when she was having fits and I honestly think that that was probably the worst advice that we had ever gotten. It was just, it was terrible, terrible advice and it went against what I knew as somebody who has experience working in the field of infant mental health.
So the concept of infant mental health is this idea that, you know, you can’t use talk therapy with small children, with children under the age of five, under the age of three. When they talk about infant mental health they’re talking about attachment, they’re talking about shoring up the relationship between the primary caregiver, or primary caregivers, and the child. My program works with 240 people in my community who are children. In my community they do home visiting, my staff do home visiting. We’ve done a lot of training around infant mental health because that’s their whole job is to shore up that relationship between the parent and the child so that the child’s success will go forward with that lens in mind.
As my daughter entered into behavioral therapy, it went against everything that I knew to be true about parenting and what I felt in my body and in my spirit and in my mind to ignore her when she was having a meltdown. And when I tried to challenge the therapist on that, he just pushed back and he was like, well, this is what the evidence-based practice says, and so we gave up on that pretty quickly, but the damage was already done. We went from having like a couple of meltdowns a week to having five or six a day.
So what I know now is that her meltdowns almost always very quickly sent my central nervous system over the edge and sent me into meltdowns. I didn’t know it at the time. She would melt down and then it would send me into a meltdown, and because I wasn’t thinking about how to regulate myself and what I needed to remain calm, we would cycle together frequently, and I was in pretty intensive therapy at the time, and so the therapist gave me some good ideas about like sometimes you do just have to walk away, or going and putting my hands in cold water, splashing cold water on my face, like something to get the parasympathetic nervous system to kick in.
As I have come to understand myself as a neurodivergent person, I have come to realize that basically through the whole of my parenting I was not taking care of myself at all, not even a little bit. And so basically, I think about the early years of my children’s childhood where I was actually working still in CPS at the time, I was a manager and I had two young children. I barely remember those years because I’m pretty sure I was dissociated. I was in dissociation for the whole of their early childhood because of it, and I absolutely know that that contributed to a lot of damage in my marriage. That eventually led to my marriage ending, but also I held it together pretty well for my kids.
I have some abuse history in my childhood and what I can now reflect was my parents being neurodivergent as well and also not taking care of their nervous system needs and their self-regulation. I knew I didn’t wanna do that with my kids, but the problem was is that I never got myself back into a regulated place. I just dissociated. I just ran and I didn’t feel anything and anything I had to give went to them and work and that was about it. So my marriage really suffered because of it, my mental health really suffered because of it, and so, in coming to realize that I am also neurodivergent, I am now giving myself language for how to recognize when I am heading into potentially a meltdown, but I’m also giving her language to understand when she might be heading into a meltdown.
And also I’ve been teaching my children to be a lot more, have compassion for me when I’m saying, hey guys, I can’t right now, like I need space right now, and I’ll say things like, in an ideal world, our house would be clean all the time and you would have these nice meals on the table and I would be the perfect mom. And I said, but this isn’t an ideal world, like I don’t have that capacity and so like I’ve chosen that sometimes, yeah, we’re gonna eat a lot of hot dogs, because really that’s their safe food anyways, we’re gonna eat a lot of hot dogs and we’re gonna eat a lot of mac and cheese and we’re gonna have a house that’s pretty messy sometimes, but that’s how you have a regulated mom who is gonna be emotionally present with you.
The Importance of Self-Regulation as a Parent
So I think the biggest thing I would say in my discovery, and I would say to parents who are neurodivergent, is it is absolutely, like that metaphor that we use of you’re on the airplane and the oxygen masks come down and they say put your mask on first and then put their mask on. I know that we overuse that. We overuse that in my field quite a bit, but it is 100% true. If you are not taking care of yourself, if you are not managing yourself, self-regulating, if you’re not finding the things that you need to remain regulated, it is going to harm your children, it is going to harm the way that you parent them.
I have so much compassion, so much compassion for people who are no contact with their parents, but also the parents who have had their adult children go no contact with them, because I think again, I’ve worked in this field, in social work for 24 years and I have always been working with parents and children and I see where parents have really screwed up. I see where parents have caused harm. When I worked for CPS, I removed hundreds of children from their homes. I see these things and I know these things. But also I can recognize, as somebody who is a parent, who has my own mental health issues, who’s neurodivergent myself, that, like some days, it’s everything you can do not to just, quite frankly, end your life, and so I have so much empathy for parents.
What I want parents to hear is you don’t get to determine how your children perceive their childhood, and a lot of children who have gone no contact with their parents will say, well, they did this or they didn’t do that or they didn’t care. And parents will say I did, I was doing the best that I could. That’s not a good enough answer. You need to sit with what it is that you weren’t able to do, more than likely because you were neurodivergent or you had your own mental health issues or you had your own trauma, and all of those things went together so that they incapacitated you as you parented.
And so that’s the thing is that if you want to be as good a parent as you can be, because there’s no such thing as a perfect parent by any way, shape, form, anything, is you have to regulate yourself first. You have to figure out how to find ways to do that. I’m speaking from a point of privilege. My children are a little bit older, 9 and 11, they don’t need the day-to-day care, but I’ve been there. I’ve been in those days where they need you for everything. They need every single moment of your attention, and those are almost impossible. Like I said, I don’t remember a lot of their early childhoods because I was just dissociated the whole time.
I know you said on here tips for late diagnosed parents. I think some of the tips are I talked about a 14 hour day or a whole weekend where I didn’t have kids and I got to my own thing, and that is a huge privilege. Parents who are single parents don’t have that option, or who have partners who maybe don’t support them in the way that they need don’t necessarily have that option. But before that happened, I had found little things that got me through. As I said before, when my daughter was melting down, one of the things that my counselor had recommended was to go splash some cold water on my hands and on my face. I have locked myself in my bedroom before when she’s throwing a fit and banging on the door and screaming for my attention. But I knew in that moment that, like we were going nowhere good, things were gonna get worse and I needed those moments to regulate myself. And so I’ve locked myself in my room and crawled underneath my bed and covered my ears and just did what I need to like, even for 10 minutes regulate myself in the moment, so that I could come back and take care of her needs as she was having meltdowns.
Talk Openly With Older Kids About Nervous System Dysregulation
Another thing that I’m doing, and this is harder with younger kids, but as your kids get older, one of the things that I’ve been doing is really giving them words to understand when they’re having nervous system dysregulation, and that has been amazing. I have seen my daughter, she’ll now say, we were at Walmart I wanna say about two months ago, getting back to school clothes, and she got out of the cart and she said mom, I feel dizzy, I feel lightheaded, my stomach hurts and I feel like I’m gonna pass out. And she had never talked in terms of what her body felt like that ever before. And I was like, okay, I think you’re having some sort of like physical reaction, maybe an anxiety attack. Let’s get you, like I put her back in the cart, like I had her sit, like she likes to sit in the main part. You know, I got her out to the car, we turned on the air conditioning, full blast, like we got her calmed down, regulated, to get her what she needed.
So, giving them words, helping them to try and understand, so, at the same time that you are figuring out what your body needs, helping them understand what their body needs, giving your children recommendations, like not when they’re in the middle of a meltdown, that doesn’t work. You cannot tell them to calm down or say, hey, I think this is really, I’ve done that before where I’ve like, this is insane, like you just ripped the couch over socks, like you just had a massive meltdown because I couldn’t find you matching socks that felt right. And she’s literally like ripping up parts of the couch and I’m like you can’t say in that moment, you know what I’m saying.
But we’ve seen a huge reduction in those escalations and in those meltdowns because one, I’ve regulated myself more. I give her the words to help her understand what’s happening in her body as she’s escalating, and I circle back around with her to sort of give her techniques, when she’s calm and not in the middle of a meltdown, to say like, hey, let’s try this next time, let’s do this.
Another thing that I don’t do, I don’t ever, ever shame her. I don’t believe she has a choice in any of it. I know she doesn’t have a choice because I don’t have a choice. I would also just say don’t take anything personally that your children say and do. You just cannot and you need to validate their experiences. I think if I see any pattern, or if I’ve seen any pattern in my social work career about children who eventually go no contact with their parents, it’s almost always in situations where their parents never validated their experience, never were present with them or listened to them with what they were feeling. And so for me and my children, I try very hard to, even if what they’re saying causes me anxiety or sadness or just kicks in my own thinking of like oh, you’re a terrible mom, like you’re a bad person, like those tapes that play in your head, even if they say or do something that kicks that in, I don’t expose them to that, I process it through myself, I regulate myself and I validate their experiences, first and foremost.
Kristen Hovet: 40:18
Thank you so much. I think you covered a few of my questions there, so that’s awesome.
Trissa: 40:22
Yeah.
The Biggest Rewards That Come From Being a Parent to Neurodivergent Children
Kristen Hovet: 40:24
In terms of things that are rewarding about parenting a neurodivergent child as someone who’s also neurodivergent, are there any other you know rewarding, you’ve mentioned some.
Trissa: 40:34
Yeah, absolutely. They are so smart. They’re just so smart and they say the funniest, craziest things and they have, you know, my daughter is the most creative person I know. I think she’s not just an artist, she’s an inventor, and to see the things that she makes, that she comes up with in the moment, are just. She made herself a pair of ballet slippers out of paper and duct tape two weekends ago that were actually laceable and I mean obviously they’re not an actual serviceable pair of ballet shoes. They look like ballet shoes. The art that I have up in my bedroom is art that she made and that she placed sort of perfectly above my bed. I mean, she’s an artist through and through, and to see the beauty that she makes just is mind blowing.
They’re both exceptionally kind. They’re just very kind children. I do think that that is directly related to being neurodivergent. I’m not saying that all neurodivergent people are necessarily kind, but I do think there’s something about the way that neurodivergent people see patterns, the way that we feel empathy. I think there’s a deep well of empathy that I don’t always see in people who aren’t neurodivergent and I see that deep, deep empathy that I really have had my entire life and what led me into social work. They have it as well and it’s a beautiful thing and they’re just funny and silly and we laugh about things all the time. I could go on and on about the joys, but there are many, so, so, so many. They’re just fantastic kiddos to be with and I feel very fortunate to have them in my life and feel very honored to be their parent.
Kristen Hovet: 42:12
Awesome. And also I have another question. I’m going to slightly reword this one from what I sent you, but thinking about now and also thinking back, because I know you mentioned now that you are aware of autism and ADHD, you can kind of go back and reimagine almost like memories or like re-, I don’t know what the word is, like reprocess parts of yourself with this new knowledge. So, with that in mind, what are some autistic traits about yourself that you love the most?
My Autistic Traits I Love the Most
Trissa: 42:43
I love seeing patterns. I’m very good at seeing patterns, and one of the things that I have been told throughout my entire life is oh, you’re so smart, you’re so smart, how did you see that? How did you picture that? And I realize now that it really has, I don’t know that it has a whole lot to do with intelligence and I think it has a lot more to do with how, you know, my synaptic pathways put together patterns and I see them. And so I have a lived experience or I’ve experienced something, and then I’m able to intuit it or kind of imagine into the future what would happen. And because of that I’ve been very successful in my career. I’ve been able to be in positions where people will come to me for advice or for mentorship because I’m able to see those patterns.
I think one of the things that also is a pattern seeking, but also, just like I deconstruct everything, I always ask why, why, why, why, why, you know what I’m saying, like what, why, how, like I’m not going to just accept what you put in front of me. I do have a fair amount of privilege in my life. I grew up in the middle class, I’m white, I am smart, like I have a lot of privilege in my life, like we never had food insecurity, we never had housing insecur-, you know like I have a lot of privilege. So there were systems of oppression that I was not exposed to when I was a young, younger child, but as I become an adult and I’ve been exposed to them and I understand them, I’ve been able to thoroughly deconstruct them and I understand now how, you know, white supremacy culture interacts with patriarchy, interacts with ableism, interacts with paternalism, interacts with capitalism, and how all of those systems of oppression come together to cause harm to those of us who do have those privileges, but also people who don’t have those privileges, both. They harm everybody, you know, and so I’ve been able to see that and I’ve done a lot of work supporting my staff.
My community is 55% Hispanic Latino. I am in the poorest community in my state, because we are a largely agricultural community, to be able to like see those patterns and call out those systems. I love that. I love that about myself. I love that I can, I love that I don’t just take an answer and go with it, like I love that I am going to spend time and I can spend time, I am able to look at something from a million different angles before I make a decision.
I love my creativity. I think I’m very creative. I love that I do have a lot of empathy for people. You know, my life has been, quite frankly and I think some people think I’m being hyperbolic when I say this, but it is not true, like I never, ever, would have spent my life working in a corporation or working for private entities. Never would have done it. And I’m not saying that anybody who does is in the wrong. I’m not saying that at all. Like we wouldn’t, have an economy if that was true, you know, but I have always been in a helping profession and I love that. I know I have made a difference and I think that that deep empathy that I have felt since I was a young child absolutely sent me down that path. You know, I remember being five. One of the memories I have is when I was five and they were talking about children who were, it was a Christian radio station that my parents were listening to and they were talking about children, you know, starving in various places around the world and I just, my dad tells us about how he looked back and I was just like crying, like just tears running down my face, and one of the things that I think is different about me as a neurodivergent person is that I didn’t just hear that and go, oh, that sucks. Like I heard that and I felt it in my body and I wondered to myself, like why, why them and not me? Or why me and not them? You know why, why? There’s literally nothing that makes me any more special than any other human being on this planet other than just the luck of my birth. I feel that through my entire body. I think that deep well of empathy absolutely is tied to being autistic.
Kristen Hovet: 46:30
Yeah, definitely. And the last question I have, is there anything I haven’t asked you about that you’d like to mention?
Trissa: 46:36
I want to emphasize to just have empathy for yourself just as you’re going through this journey, and also don’t let people talk you out of it. Know what’s in your gut, listen to your body, listen to your feelings, do what’s right for you. Don’t cause harm, but do what’s right for you.
My social circle has become very small. It was already shrinking pre COVID, but it is very small. It’s interesting because in the past I’ve had therapists that have coded that as unhealthy, and recently I went back into therapy and I found a neurodivergent affirming therapist and she asked two questions, what’s your social life like? And so I filled that in, and then the second question is how do you feel about your social life? And that’s the second question, I’ve never gotten that question before and I said I feel great about it! I like where my life is at right now. I’m the happiest, the calmest, the freest I’ve ever felt in my entire life. Does that mean that I don’t have moments? Of course I still have moments. Of course I still have meltdowns, but by giving myself compassion and empathy to be who I am, I am feeling so much more whole and better than I ever have. It’s wonderful that that’s happening at 42, but also a little bit heartbreaking that that’s happening at 42, almost 43.
Kristen Hovet: 47:52
A huge thank you to Trissa for being my guest on The Other Autism podcast.
The Other Autism 