Interview with Steph

Participant (00:01)

to Parenting While Autistic. I'm your host, Dr. Lana Ferris. I started this podcast to provide support, community, and valuable information to autistic parents. Please consider subscribing to the podcast to stay updated on our newest episodes.

Participant (00:21)

today we have Steph

us for another interview episode. Can you start by introducing yourself and maybe a little bit about your history with autism and your diagnosis story?

Steph (00:35)

Sure. I am a

which I've learned now that research is a pretty common career for autistic folks for many reasons, like one because we get to kind of go deep on something we're really interested in and another because we can work alone or like just with a couple people, which is definitely the case for me.

very much in my own universe when I'm doing my work. And I have two kids, both of whom are autistic too. And my husband has ADHD. So we're an entirely neurodivergent house. My older son was diagnosed as autistic, I think in late 2021. And

It was a light bulb moment for me, mostly because it gave me some language to understand my parenting journey up to that point. He was pretty young, he was three.

At pickup, I would talk to the other moms and one mom specifically was telling me, you know, that her son's diagnosis made her think about autism for herself and did I ever think about that for me. And I remember like exactly where we were, like at the playground after school talking about this. And I was like, no, I never thought about that for me. Like, definitely not. Like I'm not like him at all. And I had really thought about autism in this classic way, like.

especially of young boys.

And then I went home later and Googled and it was like, let me just see what's out there. And I found all these descriptions about autism in women and girls. And a lot of it sounded exactly like what I experienced in childhood. And I all of a sudden was like, again, was this moment for me where I was like, this is not at all what I thought it was about. So I went on this kind of like winding.

journey and eventually, you know, I think I did what a lot of, you know, later diagnosed adults do. I like took every quiz, I took every diagnostic test like a million times and I was like, is this autistic enough? Is this, like, can someone just tell me, like, can I take a blood test? Like, can I, you know, I just want some proof. Meanwhile, you know, like every diagnostic test I took was like, yep, autistic.

I was like, is it true? I don't know. I've got to find more data. I've got to more evidence. And eventually I went through a medical professional and like did all the tests again. And she confirmed the diagnosis for me and it still feels kind of weird.

So yeah, that's how it came to

Participant (03:21)

How old were you when you got diagnosed?

Steph (03:24)

Uh, 36, just last

Participant (03:27)

Okay. Yeah, I had a similar experience in thinking about autism and going, no, that couldn't possibly be me. I'm not a seven year old boy who lines up trains in alphabetical order and I don't rock or flap my hands in public. I don't have any difficulty with verbal communication. I had that same preconceived stereotype and then reading more and doing more quizzes. I was like,

Steph (03:57)

Right. Yes. Yes. Yes. Yeah. I think that it's funny how common that

Participant (03:57)

Interesting. That could be.

What are some of the strengths that you bring to parenting due to being autistic?

Steph (04:13)

I think what has helped for me is to connect with my kids about some of their deep, deep, deep passions and interests, even if they're not the same passions and interests that I might have, but to understand what it feels like for one thing to be like your entire universe, or like the prism through which you understand everything. So for my older son, when he was three, that

cars. Like he knew every type of car, every make of car, every model of car. He taught himself to read at three by like reading the bottom of Hot Wheels. And like that was not my, I had no interest in that. I had like less than no interest in that. But then I realized like this is how he's making sense of the world. Like this is how he's finding order and control in a world that feels very much out of control for adults too, not just for kids.

Participant (04:52)

Yep.

Steph (05:06)

For me, was like, this is how he's regulating himself. This is how he's like learning about colors and groups and themes and all kinds of stuff. So really just like getting on that level and fully immersing myself and really like giving him space to talk about it as much as he wants and to play with those toys as much as he wants. Like just having that kind of sense like, this is your

this is your world, this is what you love. And then another piece I think is like understanding the, how uncomfortable it is to have those kinds of meltdowns or like to feel

so out of control and stressed by your environment. And I think it's very hard as a parent to kind of help your kid weather a tantrum or a meltdown. I think for me, it helps me have empathy for him knowing what that feels like for me in my own body

It's not like a behavioral thing. It's a brain thing. Like There's no hack around this. Like just the way his brain works, like similar with me. Like it's just the way my brain is and I need to move through it and then I will be okay on the other side. And like he will too.

Participant (06:15)

Yeah, that's really helpful to realize and stop searching for the right parenting book and the right tip and trick to prevent the meltdowns. Because yeah, I can't prevent my meltdowns. So it's reasonable to assume that your autistic child probably can't prevent their meltdowns any more than you can prevent yours.

Steph (06:24)

Right, right.

Yes, right, And we can do everything possible. We can have as many accommodations as possible, but it's still going to happen sometimes.

Participant (06:44)

Yeah, I think that's one of the strengths I see as an autistic parent is that we get a chance to model advocating for ourselves and making accommodations and modeling, figuring out how to survive in a world that's not entirely structured for us. And I imagine that's valuable, especially when your children are autistic, they're going to face a lot of the same challenges that you do, and they get to have you as a model and watch how

you take care of yourself and you advocate for yourself and you make accommodations for yourself and you get to normalize that for them.

Steph (07:21)

Yes, and I feel very cognizant that both my kids are really watching me and how I do things, how I react to things and how we talk about autism too. So it also feels like the stakes are very high and I also have no idea what I'm doing,

Participant (07:36)

Mm

What are some of the things that you have found challenging as a

Lana Ferris (07:46)

I think the hardest is when your sensory needs or accommodation needs or regulation needs conflict with your kids needs. So there are times when, for example, one thing that I need to feel calm is to go take a walk outside. But what my son needs to feel calm is to lay down on the couch and watch TV.

as a parent having to kind of suppress your own needs in favor of your kids can be, I think, extra challenging when you're autistic. That's a pretty, you know, simple example, but there are others, you know,

when I really need him to go to camp so I can work. And working really helps me feel this sense of purpose and routine and obviously need to work to survive. But the camp may not be what he needs, right? It may be too loud or too unfamiliar and he gets totally dysregulated and needs me by his side. And then I have to cancel everything that I was going to do to attend to him, which is upsetting for me on many levels.

and having to deal with my own emotions that come up as a result of that, you know, feeling stressed and frustrated and sad and disappointed, having to kind of shovel that down to be there for him and then give myself space later to process all of that. I think really the subnegotiation of the self that happens in parenting in general is really hard and is maybe

doubly hard when you're autistic and something that seems small to someone else, can upset your whole day and can take a while to recover from that.

Lana Ferris (09:28)

I think you're spot on that having to suppress your own needs in order to attend to your child's needs can be really challenging, especially when you're autistic and it's harder to stay regulated in general.

Are there other things that you have also noticed are challenges for you as an autistic parent?

Steph (09:47)

the executive function necessary for managing every piece of

just like keeping a child alive, you know, like making sure you have the food, making sure you have the plates, making sure you have the silverware, making all the doctor's appointments, all the school supplies, getting them to school on time. like a, it takes, it's a big mental load of stuff. Having all the clothes that are in the right sizes, if they're not, like then putting them in storage for the next kid, making sure you have the next.

Participant (10:11)

Yep.

Steph (10:19)

set of clothes and like that's just that's not even dealing with the person in front of you. It's just like the logistical management of parenting. I find that part very overwhelming. And then I think what another kind of layered on top of that, why I find overwhelming is trying to piece apart what

appropriate expectations I should have for my kids

based on like where they're at and what they can tolerate and what, you know, when is it good to kind of push them a little bit? When am I trying to push them too much? Like just thinking about something that seems so non -threatening, like after school activities. Like both my kids come home and are exhausted. Like they've been masking all day at school and they just want to come home and watch TV and play with their preferred toys.

I'm like starting to feel like, okay, their peers are doing swimming or doing piano or doing dance. Like, is that too much for them? Are they supposed to be doing those things? And for some reason for me, it like makes me very anxious.

And I find I have to treat it, treat each piece like a research project to like, feel a little, like feel a sense of control, like make some spreadsheets, enter in all the information, look at it as objectively as possible.

And then remember that I can do one little piece at a time and that's okay. So there's that part. And then I think there's the interacting with other parents school events or play dates or even on the playground. All of it feels fraught. And I feel like I have to

I have to like zip up a different suit of myself to like go out and pretend to be, this like outgoing, confident person who knows how to function in society, you know what mean? And then I can come home and like, relax, you know, like just totally unwind. So that part feels like it just takes a lot of effort and it doesn't seem like it's that hard for everybody else.

what I've learned is like this autistic coping mechanism of like, before I'll kind of like prepare some things to say, or I'll be like, okay.

Participant (12:28)

Mm

Steph (12:29)

If I see another parent, I can talk about where my kids go to school. I can talk about where we live in our neighborhood and the community garden that just opened up. Like, okay, those are a couple of things I can bring up.

Participant (12:41)

How do you manage autistic burnout as a parent?

Steph (12:44)

the patriarchy makes it impossible, actually, for me to prioritize self care. And self care is not just like going to get a manicure, but would be like having

really good health insurance and paid family leave and having access to good reproductive health care. It feels really hard to individually address these kinds of problems that are so much created by these oppressive systems. So think it's really hard. And putting the onus on individuals to have to spearhead their own healing sucks.

If you're feeling burned out, it's really hard to figure out how to get yourself out of there. I think part of what's helpful for me is just having a partner who can really see me. Like he can tell by my facial expression and my tone and my body language if I'm crashing or if I'm like about to

And he will just kind of tap me out and say like, go take a break. Go upstairs for 10 minutes and scroll on your phone or read or zone out or whatever. Like I've got

Obviously, it's not like a lie in bed for six months solution. But that's something that's helped me in the moment. Another is

Just accepting that our family life and the way that we approach everything from schools to vacations to mealtime to family events and get togethers is like wholly different than.

every neurotypical family member or friend. Like it's just going to be different for us. And it's not a value statement. Like, it make what we do better or worse? It's just different for our family based on the accommodations we all need and especially our kids need. So it's been helpful for me at least to take away some of the shame and stigma that I think kind of contribute to burnout.

things are different for us and like a lot of the times they're harder because the world makes it hard if you're not neurotypical.

And also I've, for the first time in a support group with other neurodivergent parents, and that's been really awesome. Like it's just really interesting to hear other parents' perspectives about how they navigate conflict, how their neurodivergence shows

in their parenting. So that's been like just being in that community has been great. And then I think my last big one is like just allowing myself the time to be fully absorbed in my interests that really makes me feel good. That make me feel like a whole person that make me feel, you know, like my brain is

a flame with like excitement, you know what I mean?

Participant (15:40)

Absolutely, I've been working on that too, trying to replace some of the time that I would spend, you know, watching TV or scrolling on my phone with...

an interest that's really rejuvenating to me, like going out and working in my garden or working on creating the podcast or whatever my pet project is at the time.

Steph (15:56)

Totally.

Participant (16:00)

Did you breastfeed your children and what did you find kind of around that stage of parenting with chestfeeding and weaning? I know that's a topic that I've heard people talk about being really difficult and I'm still chestfeeding so yes it is really difficult.

Steph (16:19)

Yeah, I breastfed them both. My older one for two and a half years and the younger one for a little over three years. So he just stopped breastfeeding a few months ago. And I think part of what was hardest for me was the touched out feeling that a lot of moms in particular, but parents generally talk about like just having someone always on my body, always touching my body, always pulling on me.

And I think part of the sensory overload for me would be like breastfeeding one kid while another kid is climbing you and just wanting to kind of like hulk out, just like release them from my body, push them off, like get off me, like leave me alone. And it's really hard to try to retain your calm.

when you feel like you need to crawl out of your skin

Participant (17:12)

Did you find any strategies that helped you manage that?

Steph (17:16)

Honestly, the best thing that I would try to do is like try to nurse with only one kid in the room, like try to take the little one somewhere else to nurse while the big one was busy.

just so there wouldn't be two kids on me at the same time.

Participant (17:29)

read that I tried that I think has been helpful is trying to minimize other sensory input. So like I'll go in a dark room or like I'll wear my loop earplugs while I'm breastfeeding. So at least I don't have as much of the noise sensitivity or the light. And so even though I can't really reduce her touching me, I can at least reduce the other senses that are being stimulated.

The other thing I've been trying to do is giving her like a little toy to fiddle with with her free hands because otherwise she's like tweedling my other nipple while she's nursing and man it drives me nuts.

Steph (18:01)

Yeah.

my god, yeah, the worst. Yeah. Yeah, I hated

Participant (18:11)

Yeah, she's not always distracted by the toy and she's at the stage where she likes to say that everything's hers. So I'll like try and distract her and she'll grab my boob and be like, no, mine. Like it is not yours. It's actually my body. Thank you very much.

Steph (18:22)

Yes. Yes. That was also very triggering for me, the constant assumption of my body as public property. I had to keep reminding myself, they are not meaning it in this kind of male chauvinistic way that it's coming out. They're meaning it. What they really mean is, I love you. I want to spend time with you. I love being near you.

Participant (18:47)

how did you wean and did you have any difficulty with weaning or it sounds like maybe you breastfed long enough that they weaned themselves? No.

Steph (18:56)

No, there was no, I think they both would still be nursing if I let it go on forever, you know. For my older one, I was really, really concerned about post weaning depression. So I think that's part of why I nurse for so long is I was so nervous about what would happen after I stopped breastfeeding. And that definitely happened to me after

we went through leaning with my older one, like I definitely felt this like hormone shift and I was really depressed for a couple of days. But I did, drop one feed every couple of days and he was two and a half, so we talked about it. That it was time to stop nursing and we had kind of

we would cuddle instead and it was hard for both of us. But eventually, you know, it was okay. And actually, as soon as I stopped breastfeeding, I found out I was pregnant. So I feel like I had no time to have my body back to just myself. So that was pretty rough. And then with my second one,

I didn't have any post -weaning depression, but I think because I went much slower. Instead of over a week or two, I think it was over a month or two that I gradually stopped nursing or like nurse

smaller and smaller amount of time, talked about it with him and then eventually stopped and had my husband be the one to put him to bed for a couple of days.

couldn't nurse before bed.

Participant (20:22)

Do you have any advice that you would share around managing the challenges that come with pregnancy or some of the challenges that you experienced with being pregnant?

Steph (20:35)

I had really challenging pregnancies. I think mostly because I found pregnancy to be really miserable.

I found it really hard to manage everyone else's expectations that I perform this kind of like joyful pregnant person facade, which now I see is kind of masking, right? It's like they want, people want you to express how joyful you feel and also to just kind of like be yourself, but pregnant when actually it's like very hard to function in the world when you're feeling nauseous or dizzy or

your body just feels so out of whack. part of what helped me was thinking about pregnancy as like another puberty. Like a body is completely changing again and it's so different for every person. There's nothing you can read that will prepare you for exactly how it's gonna be for you. So to me as a researcher, I like tried to read.

every account that I could about pregnancy and about motherhood and found that I was like just searching for someone to tell me that my experience was okay. And once I realized that I was like, there is, there isn't like a me of the future writing something that I can read now. know, like it's helpful for sure to read many accounts to understand how diverse the experience of pregnancy and matressence like

coming into motherhood as an identity and parenting is.

But I think it's also, there aren't a lot of accounts of autistic pregnancy and parenting experiences,

Participant (22:15)

one challenge I've heard people talk about with pregnancy is that everybody wants to touch you. Like strangers assume that they should just walk up and touch your stomach because you're pregnant and now you're public property. Did you have any particular way that you managed that piece?

Steph (22:31)

I think part of what helped for me is being a very staunch feminist. kind of went into pregnancy being like, having this thought like people will want to touch me. I live in New York City. It's a very crowded place on the subway. People will be bumping into me. And I just had this very strong sense of like, my body is not for anyone to touch, pregnant or not, you know? So I think going into that.

going into that experience, having that sensibility already helped. I think what was harder for me was that no one wanted to hear how I really felt about pregnancy or the experience of being pregnant. Like when someone would ask, you how are you feeling? Like, first of all, the autistic part of my brain was like, do they really want to know? Or are they just asking, they just want me to say like, I'm fine, I'm doing great, how are you? Like never knowing how

much information people are really asking for. And then could they actually tolerate me saying like, I really don't like it. I wish it was over. I can't wait for it to be over. I hate it some days. And not you know, and then people really don't know how to respond. When you have that kind of, you know, reaction instead of like performing this joy.

Participant (23:47)

I did feel the same thing. You sometimes it was joyous. There are moments that you're feeling good and you're looking forward to having a kid and you're excited. But there are also times that are not joyous at all. And there were also times that I wasn't looking forward to having a kid. There are times that you're excited about that part and there are times that you're feeling afraid or unsure.

And people don't want to hear that either when you're getting close to your due date and they're like, you must be so excited to meet the baby. Yeah, kind of. And also everything is going to change and I'm going to have to go through labor and I don't know that I'm actually excited. I might just feel a sense of dread and nobody wants to hear about that.

Steph (24:30)

No, exactly. And I also had this deep sense of dread, like you said, about labor. And also this, it felt like a big black hole to me. I had no idea when it was gonna happen, how it was gonna happen, if I would come out alive on the other side, if the baby would be alive on the other side. And people would just say, of course, it's gonna be fine. It's gonna be hard, but it'll be fine. But in my brain, I was like, you don't know.

No one knows. This is like completely uncontrollable. And I think that the lack of ability to know those things for certain was really hard when I'm somebody who I need to know the plan.

Participant (24:59)

No one knows.

So many of the autistic people I've talked to are planners and like to be prepared. And you just really can't be that prepared. And also for the early postpartum period, like I wasn't prepared for that either. The amount of recovery and just the physical recovery part I wasn't prepared for. And they send you home from the hospital, you know, a day or two later with this baby.

Steph (25:19)

Yeah, for birth and then also for parenthood.

Participant (25:36)

They had me watch a video about not shaking the baby. And then they made sure we had a car seat. And then it was like, good luck, off you go. And I just remember getting home and looking at each other and being like, my gosh, it's just us and this tiny baby. What do we do? I guess we need to eat dinner. Okay, now I guess it's bedtime. I guess we put her in her crib. Yep, that's what we got that for, okay.

Steph (25:44)

Right, right, right,

Now what?

Right, right, Totally. And then it doesn't get better in terms of instructions or manual as they get older. Like it actually gets much more complicated.

Participant (26:05)

This is like bumbling along.

No!

Yeah, I remember feeling like we were gonna figure it out and now each time I feel like I've kind of figured it out, she changes. You figure out one stage and then suddenly they've grown bigger and they're in a whole different stage and what worked a week ago no longer works.

Steph (26:24)

things change.

Right, right, or what everybody says works actually doesn't work for your kids, so you have to figure something else out.

Participant (26:39)

Yeah, and then everyone has their own opinion and advice to give you about why you should do it their way. Well, I want to be respectful of your time. Is there anything else that you wanted to add?

Steph (26:52)

I don't think so, but I'm just so grateful for you doing this podcast and bringing people together to talk about all these different pieces of autistic parenting and parenting autistic kids. I think it's really important. So thank you for having me to chat about it. And I'm, I'm excited to, hear all the episodes.

Participant (27:07)

Yeah, thanks for being a guest.

Participant (27:11)

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