E128: How Do You Advocate if Your Child Masks at School? with Tara Marshall
Does this sound familiar? Your child "keeps it together" during school hours...and then when arriving home for the day they fall apart emotionally and energetically. This isn't them being manipulitive, or tricky at all...they are what's termed "masking" at school, something that has been described in the autistic community as a very stressful experience. On this episode, we have guest Tara Marshall, an autistic adult and speech language assistant.
Does this sound familiar? Your child “keeps it together” during school hours…and then when arriving home for the day they fall apart emotionally and energetically.
This isn’t them being manipulitive, or tricky at all…they are what’s termed “masking” at school, something that has been described in the autistic community as a very stressful experience.
On this episode, we have guest Tara Marshall, an autistic adult and speech language assistant. She shares her experiences with masking and how to advocate for their support within school walls as well as when they come home.
TRIGGER WARNING Tara describes a traumatic event about a special object to her and what was done to it. It may be triggering to some people. [Around ______]
Tara’s email: [email protected]
IEP Process Step By Step Guide: www.TheIEPLab.com/IEP
Shownotes: www.TheIEPLab.com/episode128
Tara’s Resources She Mentions in the Podcast:
Dr. Damian Milton’s Double Empathy Problem
Mona Delahooke’s BrainBody Parenting
Lisa Barrett: How Emotions are Made
Sedgewick , Hull, and Ellis Autism and Masking: How and Why People Do It, and the Impact it Can Have
E128: How Do You Advocate if Your Child Masks at School?
Samson Q2U Microphone: [00:00:00] If your child either keeps it together during school and then comes home and all of a sudden emotionally falls apart and is non-functional when they get home, or the reverse is true that they really are not okay at school and have a very hard time there, but when they get home, they’re nice and relaxed.
And if that is such a conundrum to you, then this is the episode that will bring understanding practical strategies and a lot of empathy for what our kids are going through, and autistic individuals in general. I’m so excited to bring you this episode about masking.
It’s been a long time until I could find a guest that was just perfect to bring this topic to you, and so I’m really excited to bring this to you. So stick with me because today we are talking about masking and we’re also talking about practical strategies for parents in what to advocate [00:01:00] for, and how to educate your team about exactly what masking is and how to support it at school.
Stay tuned.
Samson Q2U Microphone-1: You were listening to the Parent I e P lab, the podcast that helps you get an effective i e P for your child so that you can get them supported and learning in school. I’m Bethany zk, occupational therapist who started to notice trends in parents who got effective IEPs for their kids without having to fight the school.
My mission is to help you learn the pillars of knowledge that I saw these effective parents using their advocacy, and also to provide insider knowledge from the school side so that you have context. To turn that into informed intelligent questions. Then actually get you somewhere with the school i e p team.
So let’s dive into today’s topic about masking and think about what we can change and tweak to get the right formula for success. For your child to learn and grow at school. Welcome to the lab.
Samson Q2U Microphone-2: Before we get started into the interview, I do wanna give you a topic warning and a trigger warning. So Tara talks authentically about [00:02:00] her autistic experience, and that means that she’s talking about some really sensitive topics, especially when we’re talking about mental health of autistic individuals.
So around minute 20, she tells a pretty traumatic story for her. So I don’t know if you have kids around you if you wanna listen with headphones or maybe skip over that part for now, but definitely come back because it’s so important and there’s a reason why I kept it in the episode and I didn’t skip it.
Right. And then the other thing that she mentions is she mentions a lot about mental health and then how masking has actually led to some really big mental health issues later, including suicide. So just know that this is one of our more sensitive topics, but it is so important that we leave those in so that we know what we’re looking for and we can be prepared with how serious this really is.
So without further ado, Tara and I jump straight into being on topic. So just know that you’re gonna hit the ground running, and thank you so much for listening. Also, if you are new to the IEP lab, make sure that [00:03:00] you grab your I eep process step-by-step guide, and you can snag that at the link below this podcast and your podcast player.
Or you can go to the iep lab.com/iep for your copy to get prepared for next school year. Thanks so much. Let’s dive right in.
Beth: Tara, I would just love to have you start with introducing yourself and your experience. And yeah, then we’ll dive into masking cuz I’m super excited to talk to you about it.
Tara: Okay, so my name is Tara Marshall.
I’m an autistic adult. I’m working as a speech language pathology assistant. Um, I learned masking as a child because it’s basically forced on us. Um, There was an excellent quote by a woman that basically society has ABA’d us and that we have had enforced masking for as long as we’ve been exposed to other people, pretty much, um, [00:04:00] especially other peers our age.
Because If you have anything that resembles age appropriate language or any sort of age appropriate quote unquote skills, then your peers will force you to learn how to mask at least some of your symptoms of autism. Because if we want any scrap of social acceptance, we cannot act like ourselves. Um, the other thing, of course, is that when we express emotions, there’s two things that I need to explain here. Either it will be an extreme of the emotion that we express or we have what everyone knows is rbf, which a lot of times is because we have low tone.
I have Elmo syndrome, which is a common comorbid with autism and nobody can see this, hyper stretchy, everything. () And because we don’t have a [00:05:00] lot of tone in our face, it can be very difficult for us to show a reaction.
So we might just look like nothing’s happening and inside we’re melting down. Mm-hmm. Oh,
Beth: that’s so important. I’m so glad that you said that because I think, yeah, I think people just think that there’s no emotion in there, but that’s not true. Yeah.
Tara: Sometimes the face is almost a perfect mask to use that term because we just don’t have the muscle tone to express anything.
Beth: So can you explain just at the very basic definition, like what is masking?
I mean is it, is it, and how does it feel
Tara: when you are masking? Well, there’s a couple of terms. People use masking and camouflaging interchangeably, and the easiest explanation is if you look back at old [00:06:00] Hollywood, um, They had a form of acting, they called method acting, in which the person was given a part and the person stayed in that part.
No matter how different it was from their own personality, no matter how different it was from their own experience, 24 7 all the way through the end of filming. Mm-hmm. Um, unfortunately for us, there’s no into filming. Um, also unfortunately for us, as they found out in Hollywood, and the reason that method acting is no longer really used very much is because there was a high rate of, uh, mental illness afterwards, um, and during the process, and it led to several suicides.
Oh, so it’s very much a pressure cooker. We need to have a place and a time where we can let down the [00:07:00] mask. It preferably needs to be something consistent because otherwise the pressure just keeps building and that leads to a lot of problems with mental health. it can sometimes lead to autistic burnout.
Um, And I have seen cases where it has led to suicide. Mm-hmm. That’s so
Beth: terrible. So when we, when we talk about masking to maybe somebody who hasn’t heard about it before, is it basically, I mean, kind of like you’re saying, it’s, it like you acting like not yourself in order to
Tara: fit in, right? Yeah, pretty much.
Okay. Um, because for example, if you flap. Mm-hmm. Kids are not accepting of that, which is different to how they act. Mm-hmm. If whatever the movement is, you learn to squash down, you learn to not do it, whatever the action is. If it’s talking about dinosaurs too much, I’m getting that as an [00:08:00] example because I was a little dinosaur expert when I was a kid.
Mm-hmm. Um, you learn to stop. Even if it means you don’t talk at all, you learn to stop because the other kids will make fun of you about it. As soon as there is no typical adult in sight, they will beat you up for it.
Beth: Did you go to a public school?
Tara: Yes, I did. Did you
Beth: feel like the teachers reinforced that or the school system reinforced
Tara: that? Absolutely. Absolutely. Um, I. And one of the things that we also get in trouble for is because autistic people are less likely to notice when the teacher is watching or the other adults is watching. We’re not necessarily paying attention to that.
We don’t necessarily notice. The people who are bullying us, however, They know. So of course when we lash out in response, we get in [00:09:00] trouble because we were ones were seen overreacting and that’s what quotes about it, um, because they didn’t notice the other kid who punched us on the side of the head, for example.
Yeah.
Beth: So do you think this is, uh, a specifically autistic experience or is this all neuro divergent people or who experiences
Tara: this? I would say that the extent of it is probably the largest in the autistic community. That doesn’t mean that other groups of people don’t mask. Mm-hmm. I think that especially people who are A D H D have to calm down the fidgets and try not to look like they’re being as hyper I really don’t know how to say how it applies to people who have an intellectual disability, for example. [00:10:00] Mm-hmm. Yeah, that makes sense. A little different from my own experience. I have learning disorders, but I do not have an intellectual disability. Mm-hmm.
Beth: And a lot of the parents that seek out coaching for me, are experiencing a really hard time with advocating with the schools because a lot of the children are, are able to quote unquote, hold it together during school hours and then they come home and they’re like falling apart.
Can you explain Yes to a parent that might not know what’s happening? What’s what’s
Tara: happening? Okay, so I see two major reactions to masking. One is that the child feels like they have to mask when they’re extremely dysregulated and they hold it together and as soon as they’re in a safe place like home, hopefully is a safe space for them.
They fall apart and it all comes out there. Or the child is [00:11:00] unable to mask while they’re dysregulated. And so at school they are. I don’t wanna use bad language on here, but they are an absolute terror, Tasmanian devil at school. Mm-hmm. And then they get home and they’re little angels at home. So it’s one or the other in most cases.
I’ve never seen a case where it was mixed. Mm-hmm. Um, and I’m not sure which causes that reaction. There is a lot of trauma in autistic people, so it’s entirely possible that trauma leans you toward one or the other. Okay. Okay,
Beth: that makes sense. Um, is there anything that you can think of off the top of your head where, You know, how would you suggest a parent explain masking to the school?
If the school is like, well, we’re not [00:12:00] seeing it. It must not be a school
Tara: behavior. Right. And this is when I would refer them, there is an excellent book by Dr. Devon Price called Unmasking Autism. That is, um, Dr. Devon Price is an autistic professional, so, He wrote a really good one about it. Um, and it does have some professional references, which might be of use to some of your parents. There’s, uh, one by a couple of profess professionals. It’s by Sedwick and Ellis. Called, autism Masking, how and Why People do It, and the impact it can have, and that’s probably the one they refer professionals to because it has a lot of professional opinions on things.
I,
Beth: I think you started to say in the beginning, maybe before I hit record, that. There are supports that we can advocate for that help with the [00:13:00] masking. Can you dive into a little bit about that? And I know everybody’s not gonna be the same, but I’m wondering if you have su suggestions
Tara: of where to start.
Well, one of the things that I would start with is giving your child a safe place. A place where they can either melt down is when they need to. Or a place that has the sensory supports, and this is one of the things I say is that sensory rooms prevent meltdowns. If the child has access to sensory equipment and it’s equipment or lighting or whatever it is, that helps them feel relaxed.
You’re less likely to see that anxiety response and you know, unfortunately, that’s very individual. It might be a room with a swing. It might be your child responds to movement too much, and any feeling of movement is unsafe. So it might be there [00:14:00] in a. Beanbag chair and they’re completely supported and there’s no movement.
Uh, it might be a dark room, it might be a room with. Some light levels, it really depends on the child. And hopefully you know your child better than anyone else. Yeah,
Beth: exactly. And, and there’s been some confusion too about do we, and you know, OT wise, we had this huge fad of doing like a sensory diet where it was like a scheduled thing that we had mapped out during the day.
Um, You know, should parents be advocating for like a certain schedule of breaks or should that be somebody who knows the child well
Tara: calling that shot? Or how do we do that? I say it would have to be somebody who knows the child well, calling the shots, because sometimes we’ll need breaks and sometimes we won’t, and some days we’ll need them more than others.
I mean, especially when [00:15:00] somebody’s pre-verbal or irregularly verbal if there’s some. Mm-hmm. Say elected, mu selective mutism or anything going on, and there’s not good communication between the home. There’s times, for example, I finally hear three months later, oh, his grandmother died. Yes. Oh, no wonder the child’s behavior has been off.
That was one of the child’s primary caregivers. And now three months later, somebody is telling to me and it explains what happened. Um, so it’s like, oh, no wonder the child needed more swinging. The child needed more co-regulation. Um, so that’s one of the things, and I think that. Best explanations have seen on co on regulation and co-regulation outside of ot.
That’s something that’s going to be [00:16:00] accessible to parents, would be by Mona Hook, um, especially in brain body parenting. Um, and basically everyone cos with a baby or a toddler. That’s how children learn to regulate themselves. Mm-hmm. Is by the parent or the other primary caregiver regulating with the child first.
And it can look like hugging. It can look like using a softing voice. It can look like a lot of different things, but. One of the things is that if there are delays in those regulation skills, um, you can’t expect somebody to self-regulate before they can co-regulate. And so the child needs somebody who they can co-regulate with in their environment, A safe person, and it doesn’t have to be parent.
It can be [00:17:00] the dedicated teacher’s aid ideally one who’s dedicated to that child. Um, and hopefully that’s somebody who’s caring. It doesn’t have to be somebody with a lot of education or anything. It just has to be somebody who’s empathetic and who’s willing to try to put themselves in the child’s shoes and willing to learn about the child.
Mm-hmm.
Beth: Oh, I love that. I love that. And I, and I think too, over the years of being in schools, I’ve found that it’s like, oh, this kid connects with the PE teacher, or this kid connects with this certain person. And that’s why I, I struggle with having like one, one-on-ones because sometimes that matches a bad
Tara: match.
Sometimes bad match, and sometimes if the child finds somebody who’s their safe person, maybe teaching them to ask for that person mm-hmm. Is a good [00:18:00] skill. That might be, it can be done with a picture, it can be done verbally, it can be done in sign language. I don’t care how they ask for that person. I just want them to be able to ask for some time with that person that they feel most safe.
Mm-hmm. Absolutely.
Beth: Um, is there anything else that you can think of that would be helpful to think of as strategies to ask for or to trial to somebody who is masking? Right.
Tara: Um, I would say that unfortunately society, for a lot of us older people, we don’t have much of a choice but to mask, um, Devon Price’s book is about unmasking and that is something that, um, I tend to view as something that if you appear white, um, and if you [00:19:00] are able to.
Act in ways that typical people think are appropriate in public more, then you’re going to be able to unmask more. But it’s mostly going to be in private. For example, I’ve worked with several kids, I’ve been extremely worried about, because they’re of African American descent or Latino descent or something else.
Native American, doesn’t matter. Mm-hmm. And generally society tends to be less forgiving if they act out in public or if they act unusually in public. Mm-hmm. Was a case of the police, um, tackling a young man in his teens at one of the local parks, uh, thinking that he was on drugs and he was an autistic young man.
Um, and that does seem to happen more commonly with people from non-white [00:20:00] backgrounds, unfortunately. It’s, it’s an unfortunate reality, but masking is especially going to be enforced upon people who cannot appear like your stereotypical white person.
Beth: Okay. And then is there anything that parents can do to support their kid if they are masking during school hours and then they come home and they’re falling apart?
Tara: Right. If they come home and they’re falling apart, you might need to allow them the space to fall apart. You might designate a specific room. They can fall apart in a room that. A room which has some of the sensory activities that help your child calm. Uh, it doesn’t matter if it’s a specific kind of music you have to listen to your child on.
What helps them, uh, when it comes to music for me. A lot of the music I listen to that I find calming, and I guess it’s the A D H D in my makeup or something is stuff that [00:21:00] sounds extremely calming for my husband, for example. Um, it’s not necessarily metal, but I do listen to a lot of industrial music, uhhuh, and it’s not something my husband finds it all calming, but there are some people who also respond really well to chances and various other things.
Okay.
Beth: Amazing. So having, having a space and just allowing them to do that, and then I, yeah, I’m, I’m guessing too, to just, if they’re not completely falling apart, but you know that they’re anxious when they come home, maybe decreasing those demands, like instead of going into homework Yeah. And then doing this and this and this.
Maybe we back off from some of that.
Tara: Maybe we back off. We have snack time first. A lot of kids are hungry when they get home from school, especially if they won’t week at school or they won’t use the bathroom at school, for example. Mm-hmm. I’ve seen both of those, quite commonly, un autistic people, maybe a little bit of special time with [00:22:00] the pet.
Um, personally, I, I find cats to be very regulating. Other people are gonna find dogs very regulating our horses or, you know, whatever. Or even a stuffed animal. Oh, and that’s something I have to say that’s really important is that if the child has an attachment item, blanket, stuffed animal, whatever, do not separate that child from it.
The child will put it down when they’re ready. Uh, the child will put it down as soon as they feel socially included. And that’s going to happen at different ages and different stages. Okay. And, um, it can be extremely traumatic if you force that before the child is ready. that’s something I’m speaking to from personal experience. Um, cause I had a little, uh, stuffed black cat once upon a year. [00:23:00] Um, and I called it Bagheera and, um, Bagheera was my primary interface with the world because I was bullied so much, um, and the teachers wrote home sometime around third grade that I was interacting with my cat and not my peers.
They didn’t seem to at all realize it was because my peers had already rejected me. Um, and my mother’s response was pretty much the opposite of the response that you should have. She took Bagheera from me and threw him into the wood stove in front of me. Well, I tried to rescue him.
so it was extremely painful and it was extremely traumatizing and it probably took me a couple weeks before I was able to talk at all again after that. Mm. I’m so sorry. Yeah. [00:24:00] So, You know, if your child has an attachment item, they will put it down when they’re ready. My nephew actually a client, but you know, I worked with him for a very long time and I was with him a good, probably 20 plus hours a week.
Um, so you know, I was his auntie. I forget if it was before or after speech and occupational therapy, but we were at one of like those outlet stores where they, you know, the toys are five bucks. When they’re usually 20 some or something. Uh, when they, one of those, um, and while we were at the store, he picked up a baby Jaguar.
And you’ve gotta understand, this kid was like three and a half at the time. He had almost no interest in typical toys. He carried baby Jaguar throughout the store and I’d never told him anything about [00:25:00] my experience with Bag. Mm-hmm. So, of course I could baby Jaguar and he brought baby work with him everywhere and gave Chad work, tried all the new foods first, and he got all the stains on him and everything else.
And then, and that was perfectly great. During preschool, he carried day by Jaguar around with him and nobody minded. His one-on-one aid knew that he was much calmer with baby Jaguar there. Um, and then he went to kindergarten and there started being a little social pressure and stuff. So he started leaving baby Jaguar in his backpack.
Mm-hmm. We also told him that baby Jagger would be safer in his backpack, quite frankly. But he would go and he would check on baby Jagger a couple of times during the day, just when he needed to. Mm-hmm. And that was perfectly fine. And then I forget if it was first grade or second grade, he started [00:26:00] saying that he didn’t need to have his baby check work with him.
So after a couple of days of being told that he was no longer checking on baby Jaguar, we let him go to school without baby Jaguar for the first time, and he was okay after that. In fact, a few years later, he told us he was fine with us throwing away the we’re like, Nope. Stay here on the shelf, you can look on him whenever you wanna, this is something that’s going to possibly be really important to you when you’re a grownup.
Mm-hmm. Cause you like to look back on that sort of memory sometimes.
Beth: I love that story.
Tara: Oh, how cool. So he, you know, we let him have his attachment item. Mm-hmm. And he eventually got over it. Mm-hmm. Yeah. And, That was around the time he started playing with people. Yeah. So I’m pretty sure it [00:27:00] was that social attachment.
Mm-hmm. Yeah.
Beth: That absolutely makes sense. Amazing. Oh, I love your stories. They, they mean so much, especially to parents. I know, listening, um, to have the actual stories and examples are, are so, so good. So thank you so much. Um. Just thank you so much for your time and your help. And I just wanna say thank you for coming on and sharing your story.
Um, if people have questions, do you want them to contact me to contact you? Do you want to share how they can contact you in line? How do you feel about that?
Tara: I’m perfectly fine with being contacted. The best email address for me is AZ, as in Arizona. Mm-hmm. If you can spell, this’ll be okay. AZ autistic advocate hotmail.com.
If you can’t spell, um, sorry. I’ll,
Beth: I’ll put it in the show notes. Yes. It’ll be in the show notes. [00:28:00] Yes. So just go to the show notes
Tara: and it’ll be there. Mm-hmm. How’s that? Yes. And that’s probably the best way to contact me. Sometimes it does take me a couple of days to respond to things. Um, I am working full-time plus.
So sometimes it will take me a little while to get back to you mention something about autism in the subject matter. Okay. That catches my eye.
Beth: Okay, perfect. Well, thank you so much for your time again, I, I just so appreciate your perspective.
Thank you. Okay.
Tara: Thank you Beth. And I wish best success to the parents listening for their children.
Samson Q2U Microphone-3: A huge thank you so much Forter to coming on the show and sharing her experience and also a lot of context, about what is happening, how we can support what the school should be able to do, and also how to support your child in the home environment as well.
And I think it’s so important to think about this as an entire [00:29:00] person, right, that we’re trying to support across environments. So thank you so much, Tara, for coming on again. She mentioned so many resources. You can find all of those resources linked up on the show notes and the address is linked below this podcast in your podcast player, but it’s [email protected] slash episode 1 28, and you can find all of the links there at the top before the transcription of the episode as well.
Um, just in case you are thinking, oh my gosh, I really need to talk this out with somebody. This is a little bit premature to mention it this week, but it really pertains to this topic that next week
we are launching our one-on-one advocacy power hours, and this is so that you can get a clear outcome. Get me to look at something, whether that’s an I E P evaluation, talk through something like masking that’s happening in your situation and then we can really come up with what are your next steps and what are your options for your next steps.
Um, and that comes with the recording of the hour long session,[00:30:00] as well as a little recap in a PDF guide, that I do for you afterwards
and so I’m so excited. So many people have asked me if I do one-on-one work, and I haven’t really done a ton of it up until now. I’ve always done group coaching, but it, there is a need, especially for things like this where we need to take a deep dive and we really need to have 60 minutes to really figure out what is the best action for you and get all your questions answered, and then have the recording to look back on as well.
That pertains just to you so you can find out more information on the power hours by going to the iep lab.com/power hour. Right now it is really, really simple and it’s not the full landing page. Um, but you can also email me at [email protected] if you have any questions or if you wanna schedule before it is officially ready for next week.
So thank you so much again for listening. I’m so excited for you to take this information and apply it to help the kids in your life really blossom into the best human beings that they possibly [00:31:00] can and feel supported. Thank you so much for listening. We’ll see you same time, same place next week.
Thanks so much. Bye.