Masking in Autism: A Pro and Con Perspective EP 9

Autistic POV

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3M ago 22:39

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How masking can be helpful at times. How it can hurt. My experience with autistic masking and unmasking. My new unmasking autism workbook. I am planning future episodes on the topic.

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Post quoted in the article: "Why classic therapies don't work for autistic people?" by Pascale Larivierre
Workbook mentioned in the article "The Unmasking Workbook for Autistic Adults" by Jessica Penot, LPC-S
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Episode 9 Transcript: If your podcast provider cuts off the transcript, you can see the full transcript for this episode at AutisticPOV.com 0:06 Welcome to Autistic POV. My name is Barbara Graver and I started this podcast to share a bit of my journey as a late diagnosed autistic. Hey everybody, this is Barbara Graver. Thank you for joining me today on Autistic POV. Today I wanted to talk about masking. I'm just actually making a few observations on masking. 0:32 I do want to return to this topic at some point. But I just wanted to take kind of a pro and con approach to it today because this is something that's come up for me recently. So I have been using a workbook called the Unmasking Workbook for Autistic Adults. 0:50 It's written by Jessica Pinot, who is a licensed counselor and autistic person. And it's a great workbook. I love it. I like the way it's set up. I like the way it builds. It builds to this point kind of in the center where there are two charts that the author calls a template for change. 1:12 And I like the way the book is structured because the way it works is if you work through each section, by the time you get to this very important part of the book, you know what you want to say, which is great. So I think it's very well constructed. 1:27 And this part of the book, it basically has two sections to it. what what do you consider a gift of autism and what do you need help with and i like that i like that approach i filled it in but i found it necessary to create a 1:43 third category of things that i considered adaptive measures so they're not they're not necessarily things i want to change some some things around it i may want to change But they are adaptive measures. And one of the things I listed in this, along with some other things we'll talk about at some other time, was masking. 2:05 And I was kind of surprised. I kind of surprised myself that I put it there because unmasking has been a huge thing for me. I've suffered a lot. through masking but I did put it there and the reason I did is because masking can 2:23 have a benefit I mean masking can be a layer kind of a layer between you and the world and while it is a soul-crushing thing certainly not being able to mask is highly highly debilitating And it was interesting because I came across an article on Substack, and I'll link to it below. 2:47 The article was about two sisters, two women with autism. One was highly masking and the other couldn't mask at all. And I was surprised by my reaction to it because to me, it wasn't really an either or. To me, I could identify the experience of both of these people. 3:06 And that's because sometimes I can mask and sometimes I can't. I have had epic, epic meltdowns in public when unable to mask. And at other times I've endured difficult things without any kind of incident because of my ability to basically pretend I was okay. So, I mean, that's not good. Enduring things is not good usually, 3:30 but sometimes there isn't another choice and it is useful to be able to to step behind masking, like kind of seeing it as a shield where you can step behind it and you can interact. And, and I do this in my everyday life. I don't have a lot of contact with other people in my everyday life. 3:52 I basically spend time with my family and my pets and do media online and have a few online friends. and see an autism therapist. And that's pretty much the extent of my social involvement. But I do leave the house. I leave the house and I interact with people on a limited, kind of superficial basis. 4:14 And I have stock phrases that I can use when I'm walking my dog and someone says hello. I have certain things I'll say about the weather or certain responses I'll make. And they're not necessarily memorized, but they're things I use over and over again. And it's kind of my way of interacting. And that's masking. 4:34 And it doesn't hurt me to do that. It's not satisfying, but it doesn't hurt me. And I kind of feel proud of myself when I have like one of those little kind of ordinary exchanges with someone. And I feel like I handle it well. And it doesn't matter that nothing important is being communicated. 4:54 What matters is that I'm kind of proud of myself after I do this. And it allows me to present an aspect of myself that people can accept. So it can be good. And masking in particular could be good when it keeps you from... It keeps you from having a meltdown, say. 5:15 That's what this article on Substack was about. I am kind of all over the place, but this article on Substack, the girl said how her sister who could not mask would have meltdowns at work and how it was so debilitating. And I agree with that 100% it is. And I have done that. I identified with both. 5:36 And I think a lot of people probably can. certainly there are people who can't mask at all and that's very debilitating I'm not trying to minimize that but I think that a lot of us have had that experience of being able to mask and then not being able to mask and I think that too is worth 5:52 looking at so that's kind of how I look at masking it's not a hundred percent hundred percent bad but it could lead to some pretty dark places and I wouldn't want to pretend otherwise and unmasking is a good thing. To me, unmasking is a good thing. At this point in my life, 6:15 I am looking at it in a little bit different way than I think a lot of people do, because I have kind of a limited involvement in the world. To me, masking is not Trying to blend in or trying to fool people or trying to seem normal. I did that. I've done that in my life. 6:31 I did it in school. And interestingly, I felt like I accomplished it, like particularly in high school. I felt like I accomplished it and at great personal cost. But now I look back and I think, I don't really think I fooled anyone. I think in most situations, 6:48 people always perceived me as awkward and unusual and a little strange. And I was sometimes just kind of oblivious to that. But so I don't think I was ever really, really super successful with blending in. But That's not the kind of unmasking I'm really worried about now because it's not only that I can't really do it, 7:10 it's that I don't really want to do it. I just don't want to and I don't have to and I feel really, really lucky that I don't have to. And the way I look at unmasking now is like simple, simple things. So one way I've tried to unmask is by recognizing when something's too much for me 7:30 and to not push myself to endure situations that are overwhelming for me. And another way I've done it is by not allowing myself to be unduly influenced by other people's ideas about my personal preferences. And just a couple examples, like one way, recognizing when something's too much for me, I did the taxes this week. 7:56 And when I did my taxes, I knew if I tried to, we have a rental unit, so there's a lot to that. I knew if I tried to do it all in one day, it would be overwhelming. So I collected all the little pieces of information I needed, 8:10 and there are a lot of them over the course of a week. And then I sat down to do it on tax day, which was a mistake, but I got through it. I got through it okay because I had everything there and my son had helped me with some of it. 8:24 But I was just washed out after I did that. And even though I don't consider doing taxes hard, I don't consider it confusing or difficult, I still find it super stressful. Like any paperwork, I find stressful. So I chose to not cook that day. I didn't even make lunch. 8:44 I ordered lunch and I ordered dinner, which I never do. I don't do that routinely. But I could have pushed myself to make the meal I had planned for that night, but I chose not to because I knew it would be too much. 8:58 And I think that's a form of unmasking because it's a mask to pretend you could handle something when you can't. That's masking to me. And another thing, when I mentioned not being influenced by other people's perceptions, there are things that bother me, like ceiling lights shining in my eyes and various noise things 9:19 different kinds of noises going on and I used to kind of internalize people's reaction to that when they would say that's ridiculous there's no reason why you that should bother you I would think you're right shouldn't bother me I'll just white knuckle it and sometimes they could and sometimes they couldn't but I don't 9:38 I'm trying not to do that anymore I'm trying to tell myself that they don't understand and that that isn't my problem. So that's another way. And kind of hand in hand with that, like honoring limits, like not attributing my reactions to bad behavior or subjective labels, 10:04 like thinking I'm picky or I'm fussy or I'm selfish or I'm immature. Like I try to just think that this is something that's overwhelming me. And I try to kind of honor that, that this is a limit for me. Example is I was making dinner and everybody in our house, we don't eat at the table. 10:25 We hate to, we just, I make the food and they grab it and take it. So somebody was getting food off the stove and a pan of corn fell off. So the pan of corn fell off and the person who was there when it fell started talking about how 10:42 this teapot's always in the way and on and on. And another person in the kitchen started talking about, don't worry about it. It's no big deal. And meanwhile, the dog's trying to eat it. And somebody else is saying it won't hurt him. It's good for him. It's just like all this pandemonium was going on. 11:01 And it was so overwhelming to me. And a lot of times I'll overreact, quote, overreact to a situation like that. And I'll kind of get shamed a little like it's just corn how could you overreact like that but it's not about the corn it's about the chaos and I'm beginning to kind of see things like 11:20 that a little more clearly and to honor my reaction to it to not to not demonize my reaction to it to not mislabel it so I just said everything has to stop I have to clean this up and it worked it kind of worked 11:39 And I had a similar situation with not having been given enough time to do something where should I be able to do these tasks in an hour and get to an appointment on time? Should I? Should the average person? Probably. But it's triggering for me and I felt it myself getting triggered and I had no choice. 12:03 I had to do it, but I was extremely, extremely pressured and triggered and I didn't quite have a meltdown, but I could have. I was getting close. Like if things had started to go wrong, I probably would have. And I don't let myself blame myself for that. 12:23 I don't make myself try to pretend I'm good with this because that's masking. I mean, it may be a basic form of masking. It's not masking like going into a board meeting and making everyone think you're competent. But it's still, for me, it's masking. And doing it is detrimental. 12:43 And there are times, I think, when it's good to mask. But there are times when it's better not to. And I think the times it's better not to far outweigh the times when it's a good thing. And the last thing I've been kind of trying to do with unmasking is to reject normalizing behavior. 13:04 And even though my sphere of socializing is very very small I do run into this and I read an interesting article also on Substack it was by Pascal LaRiviere and she talked about autistic psychotherapy and I thought it was really interesting and she talked a bit about 13:31 the autistic brain and she said in the article the autistic brain is hyper hyper everything, hyper connected, hyper plastic, and hyper reactive. This leads to hypersensitivity, hyper perception, hypertension, hyper fear, hyper memory, hyper learning, hyper emotionality. And she goes on to say higher perception and hypersensitivity mean that the brain 13:56 of autistic person has to process a lot more information than that of an holistic person. And that's just another word for neurotypical And she goes on to say that the cortex, autistic cortex, causes the brain to perceive stimuli in an intense manner, but also in a somewhat fragmented way. And I found that really interesting. 14:20 And she says that the perception of environment by such a brain slightly varies and is therefore slightly unstable, which I think is accurate. And she quotes an article, which I'm going to read by Markram and Markram, that says, as a consequence, the autistic person would remain with a fragmented and amplified perception of bits 14:40 and pieces of the world. And I think that that is a good description of hyperconnectivity and how it works. And it can be a strength. I mean, it definitely can be a strength. Like when you're researching or learning or doing creative work, hyperconnectivity can be a strength. It can also be a problem. 14:57 It's been a problem for me I think in my writing, the fragmented worldview has been a problem for me in my writing. So I think that to reject normalizing behavior, we have to be aware that this is not a subjective difference. We're not subjectively different. 15:16 Like when I'm standing in the center of chaos and my processing is shutting down and I'm unable to think or talk, annoyed because a family member is playing the radio too loud. But when you talk to some people, holistic people, neurotypical people, and you 15:41 If you allude to a situation like that, they'll say, oh, I know just what you mean. The other day, my husband had the radio up so loud and I turned around and snapped at him and I felt so bad. And I'm not trying to minimize situations like that. 15:54 I think certainly irritability and fighting and trying to maintain a relationship, those are all difficult things and they're all worth talking about. But it's not the same as shutting down. It's not the same as having a meltdown. It's not the same as being completely overwhelmed to the point where you're not processing. 16:15 You've reached your saturation point for processing. It's very different. The thing is, it doesn't necessarily look that different from the outside. Sometimes it does. But if we're in that endurance mode of masking, it might look the same. And so people don't see it. And that's a big problem with autism just in general, that the whole entire, 16:35 which I hate the DSM-5 and what it represents, because the whole entire paradigm of autism is based on what people outside us observe. Like nothing is based on our inner experience. And that's a huge, huge problem. luckily people are beginning to address it but it's still a problem but I think 16:53 it's very very important to reject normalizing behavior and I think one way one way I am going to do that do that because I'm struggling with that actually right now doing something better with some things than others what the way I'm going to do it 17:08 I think is by trying to learn more about the actual architecture of the autistic brain because there are objective differences between the autistic brain and the neurotypical brain. It's not subjective. It's like you could hang labels like immature and impulsive and fussy and difficult. You could hang those labels on somebody. They're subjective labels based on outside observation. 17:36 But they don't account for the structural differences between an autistic and a holistic brain. And I don't think you could reduce it all to science. I think experience is huge. And I think talking about our inner experience and doing workbooks and validating it and journaling and Understanding ourselves is just as important as understanding science. 17:58 But I think the science is good, too, because I think it's one way you could reject normalization. Like when people say to me, everybody's autistic, I can say, no, actually only three percent of the population is autistic because. You know, that's just a factoid. It's just a statistic, but it helps. It helps to know those things. 18:20 So I'm going to try a little bit to learn a bit of the neurobiology. And I actually, my degree, my undergraduate degree is actually a science degree, but I'm not a science person, so it does not come easy for me. But I am going to focus on that because I think that, could help. 18:41 So I just wanted to share that, you know, and just as kind of a recap, masking isn't always bad. And people who do not have the ability to mask suffer greatly in the world, very greatly. And we, I think it's important to remember that, that for some people, masking is a choice. 19:00 I mean, that was kind of the point of the article I read. For some people, it's a choice sometimes. And for some people, it's not a choice at all. And there's all kinds of shades in between that. But the bottom line is, for me, I put masking down as an adaptive mechanism because I think it is. 19:17 And I think sometimes it's helpful. I think sometimes it's a shield against the world and that it's good to have. So I don't completely, as much as I hate masking, as much damage as it has caused me, I don't completely... demonize it because I think it does have a function like a lot of kind of adaptive 19:40 maladaptive things have a function so secondly unmasking is a good thing and unmasking isn't necessarily always about hyper performance it could be about recognizing limits honoring our own limitations, honoring our own sensitivities, rejecting normalizing behavior. It could be subtle things. It doesn't have to be performance related. It could be subtle things based on interstates. 20:09 And that's pretty much it. I think that working to unmask at our own level, like I feel like my level of unmasking is lower than the level some people talk about. But I think working to unmask at our own level is Highly beneficial, and I think that it's something we need to keep dialoguing about. 20:31 I think we need to keep making people aware of our interstates to the best of our abilities. I find it really hard, but I think it's worth doing. So that's it. This is my podcast, my first podcast totally dedicated to masking. I am going to have a few more. I'm honestly not sure what I'm doing next time. 20:50 I forgot to look, but so it'll be a surprise. Sorry about that. I'm doing the podcast on the first and third Friday of the month. So you'll see me next month on the first Friday. And if you have any questions, please feel free to contact me, leave a comment, or you could contact me on Substack. 21:09 My Substack is barbaragraver.substack.com. The name of the Substack is Writing on the Spectrum. I'll include a link. That's a good way to connect with me if you sign up for my publication. It's free. You'll get all the, all the podcasts. You'll get all of my blog posts. Some are on autism, some are on writing, 21:32 some are on metaphysics because that's my special interest, but you'll get the blog posts and the media and everything if you sign up for that. And you can also follow this podcast on all, pretty much all the major podcast apps. If you need closed captioned, You might want to look at it either on my podcast site, 21:52 which is autisticpov.com, or look at it on the Podbean app because I don't have closed caption on any other platforms that I'm aware of. I've only been able to set it up for Podbean. So I think that's it. Best way to stay in touch is the newsletter, the sub stack. 22:13 And I will see you guys again in May. Can't believe I'm saying that. And thank you so much for listening.

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