This is Board of Inquiry for Monday, June 20th, 2016.
Hello and welcome to a point of inquiry. Production of the Center for Inquiry. I’m your host, Lindsay Beyerstein.
And my guest today is Michelle Vine’s, the author of Asperger’s on the Inside, a memoir about growing up on the autism spectrum and receiving the life changing diagnosis as an adult. Michelle was born and raised in Australia, where she worked as a chemical engineer before immigrating to Houston, where she’s currently raising her two sons. Michelle, can you start by telling us what Asperger’s syndrome is?
That’s always a really hard question to explain.
Sorry to answer because it’s sort of complicated, but I like to explain it by saying it’s sort of when the brain grows a bit differently to normal, like it has slightly more developed areas and less develops other areas. And so we become better at some things and worse at other things. Some of the areas people with Asperger’s can be good at or things like hyper focusing and, you know, getting really, really involved in the things we love and sometimes being logical, little technical. But it often comes with difficulties with communication, reading, body language, reading between the lines. Similar difficulties to those on the autism spectrum, like, you know, classical autism. But it’s at a much higher functioning level usually.
How did you come to be diagnosed with Asperger’s?
Oh, that’s a long story. I think growing up, I was always a bit different and maybe other people were more aware of it than I was. But as I got older, I was talking to a friend one day who became a psychologist. I was talking about difficulties I’ve had with people. And she suggested it to me.
And then I just sort of dismissed it because it seemed too, too serious a thing to be me. And I felt pretty normal.
But over time, I heard more about it and I looked into it again. And when I really started looking at it, I started to understand, actually, yes, this is me.
In fact, everything about it is me.
And it’s interesting cause Asperger’s was taken out of the DSM five. Did that affect your care or how your doctors deal with you once you had the Asperger’s diagnosis?
Yeah, that’s complicated. It’s still supposed to be under the autism umbrella. So as far as I know, people who are getting help is supposed to get the same help. But I wasn’t. I have a diagnosis, but I don’t really receive any support. So it didn’t affect me specifically. I’m not quite sure how that’s affected other people.
How did you decide to write a memoir about. About what life is like with Asperger’s?
Another tough one, I think, for a long, long, long time.
I felt like when I communicate with people and just in life, that people misinterpret me and misunderstand me sometimes.
And there’s just so much I want to explain to people like when I think someone’s upset with me and I’m trying to figure out why and I figure out why it might be. And. And I have all these thoughts and I think people misunderstood and misunderstand me a lot. So I wanted to sit down and write it all down, write down what’s going on and just do it in an interesting way. Like, tell my story from start to finish. Not just like go on about each point. So I decided that I wanted to write a book that would communicate to everybody in a way that people will want to read like a really interesting story. So I decided to sit down and write. Yeah, I just started writing and then it sort of became more structured, it became my journey from about a year after diagnosis, talking about all the things I’d go through or went through. And as I slowly start to understand myself better and become more confident, that journey is in the book, because that was the time I was writing it all down. And then I also look back through my life and slowly explain to people what I went through the story and told everyone all the things that had gone on for me.
And yet when you decided to write the memoir, were you already out to everybody in your life as to your diagnosis, or was that kind of part of the process of writing? It was realizing other people were then going to know about it?
No, actually, when I started writing the book, I was I’d had a few people I’d told who I didn’t know very well, like I was in a new country so I could only tell people I’d only just met. And that hadn’t gone so well. And I was feeling very unsure about it and afraid to tell more people. So within the start of the book, I talk about that how, you know, telling people isn’t working and I’m afraid to tell people. And as you go through the book, that is sort of my story of coming out. I become more and more confident by the end of the book. I’ve told everyone and I’m happy and I’m confident and it’s going a lot better for me because I’m actually telling people with confidence, not with this fear of oh, no, what if they think something bad is really interesting?
I mean, I just identify with so many of the things that that you cover in the book about, you know, what what life with Asperger’s. It’s like it sort of made me wonder whether I mean, I think I probably neurotypical hanging on to that by the skin of my teeth, like you’re on the spectrum of just a just Asperger’s adjacent. Maybe, but I blew my mind what you were saying about dilated pupils, because that might have been something that I’ve had all my life as my eyes constantly wide open, like barn door. As long as I didn’t ask and Aspy think, wow, I, I’m not certain it is.
I just sort of note that a lot of escapee’s have light sensitivity. And I have a few Espey friends and I’ve noticed it was a pattern. I noticed I don’t know if it’s a fact or not.
I just know that I have dilated which has been neurologist’s out there. If you’re. Yeah. Just please write in and answer this. This important question, because it’s interesting to it goes with, you know, all that kind of sympathetic nervous system arousal stuff. So, you know, both the anxiety component of it and the light sensitivity component. Yeah. When you’re when you’re nervous systems cranked up, you open up your pupils. Not much more to let in more light just because of the arousal.
Oh, that’s interesting. That would make sense. I’ve certainly read a few articles where they’re doing studies and they’ve linked autism. An iceberg is to like overactive neurons in the brain, like too much sensory flow information. And yeah, I guess I guess they’re still trying to find out exactly what’s what’s causing it, what’s going on. But it could be something in that area.
What was the impetus for you to get tested finally? I mean, you didn’t find out until you were in your late 20s, right?
Yes, very late 20s. Probably early 30s. Oh, no. I guess I was diagnosed at 30. So, yes, you’re right. I once I started to think I have asparagus and talked to people online and the things they were saying resonated with me so much. I think I just really wanted to know one way or another. So I found a doctor and I submitted myself to be tested and went through that whole process and got diagnosed.
Then how does the testing process work for me?
She had a primary interview where she just screened me and talked to me, asked me a lot of questions. And that was actually a really, really fascinating and amazing thing for me, because she dug right down into the really s.b things and made me learn a lot about as big as I was able to tell me.
Oh, yes, all the people have those experiences to actually that’s really common at the time.
That was a bit profound, like, wow, I’m not the only one.
Then after that first interview, she brought me back for a lot of testing, white paper testing, answering questions, writing answers to questions, getting people who knew me when I was younger to fill in answers to questions. I was a little short on those because I was in another country, but we did what we could. And yes, she paced all the information together and, you know, ticked boxes in the criteria and came out with the conclusion that it’s very highly likely. I have asked Bagus.
I don’t think they have a state ID like you do. Yes, it’s bogus, but. Yes.
Yeah. So how does that affect how you process sensory information?
How does my asparagus. Yeah. Yeah. Well I, I don’t have all the sensitivities.
Like some people have difficulty with touch and taste and I’ve been okay with those ones, but I’ve definitely always been very light sensitive and like until I knew I had as big as I didn’t even really know that other people weren’t bothered as much by thing.
Like I was just trying to put up with it. Because if you keep saying it’s too broad, this is annoying. You just say I’m fussy.
So but I’ve always known that I don’t like.
Being too much in the direct sunlight, I feel a lot more relaxed when it comes into evening or when I can come in the house and turn the lights down a bit.
I just feel less stress, so much calmer because that’s part of overstimulation. Like, even if it’s just bright lights all day, I can find myself tired, cranky, sort of out of that energy to deal with everything else in my life.
And sand can be the same. A lot of loud sounds, screaming noises, a lot of people talking over each other. It just sort of it takes away energy tokens. So by you know, as the day goes on, you just become less and less able to have the energy to do things and have the energy to deal with people.
A lot of people know about stimming is kind of a stereotypical thing, that intersexual feeling, jism spectrum. What is it and how does it does it play any part in your life?
I don’t know exactly what causes stimming, but I understand it’s sort of a either a self soothing or self stimulate can be different for different people, but it’s either one or the two.
Sorry, one of the two.
And it’s usually repetitive motions of some type. And some of them are really obvious and some of them are very, very subtle, like someone might just like rub their nose in a way that looks normal and you won’t realize this stimming for me.
I’ve never had a lot of stimming. I think I just like if I’m a lion, I might do little things like rock a tiny beetle, bounce my leg. I tend to do a lot when I’m sort of spaced out daydreaming.
Right. Yeah, but I don’t notice I’m doing well. I was, you know, sort of singing to myself. I never noticed I’m doing these things. But at some point I guess I realized then socially strange because I don’t do them in public.
I only do it like I’ve learned to only do them when no one’s around.
But it’s kind of continuum, right, that everybody does sort of self soothing behavior. Yes. To what extent or another just depends on, you know, what it is and how dramatic they are.
And that’s what made it so hard for me to sort of understand and accept I had as big as in the first place because so many of the symptoms of things that people some people will have and to some degree and people will have one and not others. And the the only difference really is when you’re on the spectrum, they are a lot more frequent and a lot more intense. And when you add it all up, there’s a difference. But at first I did a lot of oh, well, everyone does. Dismissing symptoms, dismissing differences. I thought I was quirky, centric, a bit unusual. But, you know, I just.
Yeah, that’s me. Yeah. I took a long time to put it all together.
It made it difficult. You have a really interesting discussion about how even though you have a really high IQ and you’re really good at your job, how aspect is it difficult for you to function in a regular office environment? Can you talk a little bit about that?
Like that. That was a very difficult situation because I couldn’t even put my finger on why it was difficult. But every time I’ve worked in an office or a public place, I’ve found myself very quickly just feeling like I needed to get out of there, like I just couldn’t stand being there anymore. And it’s not because the work’s bad or that, you know, half the time at least it’s not because the people are behests. We’ve got some stories about that.
But it I think when I talk to the castle, if a diagnosis, she explained to me that it’s common that you just sort of get overstimulated, tired, frustrated people communicate differently to use a lot of Aspies like to do things their own way and have their own way of seeing things or having to do things other people’s ways that don’t sort of compute with you can be frustrating. And it’s just the combination of all that stuff can be very tiring. And having to sit in an office 9:00 to 5:00 with is lots of noise, lots of light, lots of people talking at once. Where you are expected to work on the computer and do your stuff while people are talking in the background can be hard because often the autistic or S.P. brain is very wired for single focus at a time and shifting channels back and forth or trying to do things at once is a big challenge for me and I can find it extremely exhausting. So that idea of trying to work while people talk and interact and expect you to sort of tune into what’s going on there as well as your work was just it it sort of takes away all your energy very quickly and you just want to run away like I can’t stand it here.
Everyone go away and leave me. But you can’t do that in the workplace only if you are a chemical engineer. Yes. Yes. And I’m at university.
I did really, really well because that environment worked for me. And I, I, I could study in my own time. I could socialize in my own time. So yes, I had no trouble getting a degree.
I was wondering, you mentioned in the book you talk a lot about how women are often downplayed or miscategorized when they have Asperger’s like symptoms. How did that work for you?
I think for me and a lot of other S.P. women, we put a lot of energy and focus into fitting in and getting along and seeming normal because we’re I guess we’re just tuned to be a little more socially concerned and interested in getting along socially. So it can be a little less obvious in women that the struggles become more internal as opposed to obvious outward behaviors. I think that answers the question. It just means we might be a little harder for people to pick because we’ve got a lot of coping mechanisms and ways to hide. Espinosa.
Asperger’s manifests itself differently in women offshore.
I think like but everyone’s different, obviously, every individual. So I can’t say women this menace, but in general, men tend to have more unusual obsessions and be very into it like some particular technical thing, for example, or some particular, you know, there their differences can be more obvious and they spend less time trying to hide it. And men respect men who are strange or we had a bit more as long as they are competent, whereas women are more respected. You know, if you act too smart or too focused on women, don’t think that’s a wonderful try it on the women.
So it’s more important for women to find ways to socially fit in and become a little less focused on being competent at the things that competent hatch happens making sense. That definitely makes it remains. It it comes out differently because we deal with it differently.
You talk a lot about how much, how much, how strange it is, sort of navigate female social cues because you’re so much more indirect than man a lot of the time.
Yes. Yeah. And I think the challenge I’ve had, like if I was a guy and I offended other guys, I’d probably tell me very nicely or not nicely, whatever, but I might.
No, it’s OK. You too bad. Yeah, I might.
I guess I’m glad that men don’t suck me generally. Yeah.
But if I offend women, if I say the wrong thing, they might not tell me directly. I might just find that suddenly I thought someone was a friend. But they are too busy to hang out with me now or they cancel things or instead of being very chatty, they get down to business more and don’t talk. You know, there are little ways women like, you know, they’re mad at them. Yeah. And if I don’t know what I’ve done, if I have no idea what I’ve said, it’s just very confusing.
When you started coming out to people when you were living in Houston, the. The moms of your kids, friends and so on, were they generally accepting or do people have our time? Wrap my head around your diagnosis?
Well, at first in Houston, I only knew expatriate moms and I actually had some bad experiences that I didn’t know many of them well enough. So I didn’t really divulge to that group just to one or two. And I guess those one or two. I mean, I was I was a bit depressed because I was isolated. I was having trouble making friends. So I guess I was a bit negative to those one or two. And they decided they didn’t want to keep dealing with someone who was so troubled at that point in time. That sounds like it really hard. I know it was at the time and I understand both sides of that story. Like I understand that typical people feel very emotionally drained when they’re with someone who’s having a really hard time. And if it’s someone new, you may not want to put the energy into supporting that friend. And on the other foot, of course, I only had one or two friends and they sort of walked away from me and that was so hard and it felt like hurtful at the time. So, yeah, I can see it was just a hard time because I was new. I didn’t know anyone. I didn’t know how to cope with this difficulty fitting in.
You make your husband before you were diagnosed. What was it like? He is neurotypical, right?
You mean he’s my ex? How? Your husband was separated? Yes. I met him in Australia at university. He is neurotypical, but I have to say he’s not typical.
I would put him somewhere in the category of near diversity, though I don’t know exactly what. But he’s he’s got his own quirks and differences. And we we got along pretty well. And yeah, I came over to Houston with him.
If you were to be dating again, now that you know that you have Asperger’s where you approach it differently.
Yes, I am. I can gossip to you. I actually am dating again and have been for a few years. Great. I think it was three or four years ago that Michael and I separated just. People might be curious. So I’ll point out that we just had very different work goals. He wanted to travel all over the world and and I had a lot of trouble with this chopping and changing. So we parted on good terms. But, yeah, I’ve been seeing my current boyfriend Josh for some years now and is an S.B as well. So at first we had a very turbulent relationship and we had trouble communicating and learning to cope with each other and some bad patterns. And we we actually went through a bit of counseling for communication. And like I think for the last two or three, maybe two years at least, things have been really, really good. So I think great to us these we actually clicked really well. We just needed a bit of assistance that’s getting those patterns of communication right.
What’s it like being pregnant? Being asked Aspy, when you have all kinds of sort of energy costs and, you know, anxieties and your body’s trying to, you know, be really difficult.
Gosh, I don’t know what it’s like being pregnant for other people. So to me, I was really depressed and suicidal. I coped with pregnant.
I think at first in my first trimester, it felt a bit foreign to me like I had this idea the baby the concept was a bit weird to me. It felt unnatural, my body being different. And I don’t like change so much. So there was this sense of, yeah, I was uncomfortable with it at first, but I got over that and I think I just had the same sort of pregnancy issues everyone else did. I was tired a lot. I slipped a lot of the day. But fortunately at that time I’d paused my work.
So I had time to just be alone and sleep until it wasn’t so bad that I phoned to get the sense that your kids are neurotypical or divergent or all. Oh.
My oldest son, Isaac, has as big as he was dying. He’s six now. He was diagnosed at three. It was very textbook, very we could see a little aspy sorted out. You had an IV like he’s done so well. Well, I’ve known how to deal with him. I’ve understood him the whole way. And, you know, he’s been doing brilliantly at school. He’s actually in special ed and in gifted and talented.
I’m really proud of him. And my youngest one, Trent.
He I don’t think he’s on the spectrum, although he’s got some overlapping traits. But I just personally, I think he has something like ADHD going on. He’s distracted and crazy and hyperactive.
I have two very different and sort of special children, but they’re they’re both lovely, too. And when you when your firstborn started showing signs of being on the spectrum, how did that feel? Was that exciting in a way, just to have a kid or was it scarier?
Neither nor like I know the advantages to being on the spectrum and I know the downsides. And I saw him having as big as traits. And I thought, oh, yeah, he’s he’s like me. And I was happy about some things. He seems to be very intellectual and very smart, and I’m very proud of him for that. There’s also a little bit of Horia like. OK. He’s probably going to have some social challenges. I’m gonna have to work really hard on this one to make sure his self-esteem is very high so that when he encounters people who want to pick on him for being different, he’s just going to be able to brush it off and know that he is awesome as he is. He’s different. He’s quirky. I tell him, you know, sometimes crazy and funny and all of that. And I want him to, like, embody that as his personality and not feel bad if people point out is different. And so we’re just going to have to, you know, help him form his identity is different.
But I’m also it’s really interesting theme in the book about emotions and logic. And it’s something I didn’t really I hadn’t really thought about before, which is that Asperger’s syndrome is characterized both by being hyper logical and rational and also by having this really emotionally intense world that it’s not like people with Asperger’s are like Mr. Spock or just sort of y’know.
No, I was there’s a lot of rumors out there that Aspies have no emotions. But from articles I’ve read online that are coming out from all the people I’ve talked to, all my Aspy friends, I think most of us have like crazy emotions. We get very upset when we’re upset and it takes a long time for it to calm down. And we get we can be very happy, too. But, you know, we we certainly have trouble, as I put it, in the text, with emotional regulation, which means just the emotion comes and it goes again quickly for other people, for us. It seems to stay up. Yes, I down. And we have a lot of emotions we have to work through. So we if anything, it might be a more a case of that.
We get overwhelmed with emotions and we get a bit like a deer in the headlights.
People pick up that way, look on emotional, but we might be just stuck. We might be having so much emotion, we don’t know how to process it or we don’t know what that emotion is or we don’t know the correct way to express it and communicate it. Or on the other hand, when it’s other people’s having emotional experiences, we might just not be picking up how the other person is feeling at the time to show the right emotional response. I’d like sometimes I talk to a person and something’s going on with them. And an hour later I’m in my bedroom and I’m like, oh my God, they must’ve been really upset about that.
Like, yeah, they should have shown concern. But it took me an hour to realize that I should have been showing the surface.
They were talking about parking or.
Yeah, I got and it turns out they really meant cancer. Yeah. And I have to go home and compute that.
Oh, all that’s what was going on. That wasn’t about parking. Yes.
Sometimes it’s just a delay. It’s sometimes it’s logically figuring it out first.
So is Asperger’s kind of a problem with theory of mind of kind of representing other people’s mental states and understanding what’s going on in their minds?
Yes. Yes, that’s one of the big things they say is different about people with as big as we may have a lot of difficulty with theory of mind, which means knowing what another person might be thinking or feeling from listening to them and watching them, it’s more like I have to logically deduce it. And I’ve been in this world so many years now that I’m actually quite good at that. And I do fit in and I do come across normally. But it’s sort of an intellectual effort. It’s not just intuitively I know what people are thinking or feeling.
It’s that I’ve learned how to figure it out and figure it out quickly, that you approach it more like a detective with multiple variables.
Well, I try not to make it all logical and analytical, but that’s sort of the brain is crunching the data as I’m trying to figure people out to navigate my way through the world. But I’m not a robot, I promise.
And what would you say is the most difficult misconception that people have about autism and Asperger’s that harms people on the spectrum the most that you really wish you could dispel one? What would it be?
Oh, gosh, that’s such a hard question.
But I think I think there’s a lot of if you appear normal on the surface, people can just interpret your differences as being rude or inconsiderate, or they might think you’ll find you don’t need any. Like if you’re saying you’re struggling with stuff, it comes across as whining or is wanting to be lazy or wanting extra.
You know, especially if you’re a woman, people will say, if they won’t, they want you for. Oh, well, this person is a very intense internal world. Valentine Day in for oh, she’s a primadonna because we wanted to complain about things, especially if they seem like they might be my age to other people.
So we might seem melodramatic or to be complaining a lot or we might just say nothing and have led to be quiet about that. But, you know, one to people to understand that underneath there’s a lot going on and it’s that can be a lot of challenges. So sometimes we do need we need little accommodations and the more confident we become becomings and we start saying things like, actually, that’s too much for me. No, I don’t want to go into that restaurant. It’s too crowded. I’d rather go there. You know, we just sort of do need those. We we we know what we need. And it’s not fussiness. And we sometimes we’re just trying to manage our energy.
And yeah, I’d like people to not misunderstand, that is there’s anything other than what it is you, right, that all your life you’ve been kind of putting people into a taxonomy of safe and unsafe people.
What does that mean for you?
Oh, yeah, I talked about that in a chapter of my book. It’s just that when you go into the world very quickly, sometimes you say things and there are people who can take it the wrong way. And you have to be very careful what you say and watch yourself. And there are other people who just sort of will try and understand and laugh about it and understand. If you say funny stuff, it’s your purse. They’ll try and figure out what you mean by it, to not just interpret it as what they would mean. So some people I feel safe to say whatever I like around because I know they’re not going to misunderstand me and other people I know I have to be careful around in that. That requires a lot more energy. So I just sort of in my mind, this is a person who’s safe to talk freely around, and this is a person who I have to sort of put a lot of energy into conversing with. I guess that’s the crux of what I mean by that.
Do you like the sort of high functioning, low functioning dichotomy or do you have problems with it? I know different advocates have different views on that.
I know some people have a lot of problems with those terms. It’s never bothered me. I just might. Maybe that’s because I call my so high functioning. I might be on the end of people who don’t find that annoying.
Yeah, I’m not sure.
I think I think from people who are people who have children on them. We don’t want to call low functioning. I don’t know what the current term is, but people who have children with more obvious challenges might find it frustrating that there are some people on the other end who appear to be doing fine and having it easy and want funds and want help. And I guess ultimately there’s a pool of money for autism. And I hope people are fighting over it. But it might be hard to see why people on this end of the spectrum need anything or want anything or speaking up so loudly when there are people with so much more obvious difficulty. And I don’t want to for a second say that if you have a low functioning child, that that’s not very, very hard over. Like, I imagine parents with people on that end of the spectrum need to do a lot of work and need a lot of support and assistance. I can’t even imagine how hard that would be.
I mean, it’s expensive to sphere’s, though. There’s the autism is simply being different where it’s not a disability at all. It’s just a different way of being in the world. And then there’s also disabilities that are correlated with that or in some people.
I, I, I really darton or the right thing to say on I’ll offend someone. But I guess on the classical autism end, it’s, it’s a lot of work for the people and in the persons lives. And up this end it’s not really that we’re doing fine and seeming fine. It’s more like the problems come out as depression, anxiety, isolation, loneliness, draining of energy, like inability to just keep getting up and doing things that require that they’re right. This is not a problem.
It’s inherent in as people with Asperger’s, though, right? It’s a problem. They’re not sick. They’re just the world does not accept people as they are.
I think the thing is on this and we’re fine, but it’s very hard to function in this world. So very often we have these problems, the side effects of trying to cope in a society that’s just not that that requires more energy than than the way we’ve set it off.
It doesn’t anticipate that people who are different.
And I think actually like depression and isolation is a huge problem in the high functioning end. And there are difficulties. They’re just not very visible to. It’s an invisible disability. Then that’s how I’d summarize it.
You’ve become you became involved with with humanist groups. Can you talk a bit about how you became involved with secular and humanistic groups? OK.
I grew up in Australia and I was just always non-religious. I don’t like I’m not atheist, anti religious. I’m not anything specific. I just don’t happen to believe in anything religious. And I came to America where it sort of is more divided into religious or atheist, and they it’s to be a bit more of a serious. Like, people think atheist means something terrible and bad here. But at that, actually, I think there’s a lot of us who just don’t believe. But we sort of humanist and and the humanist groups are just about people look after for each other. People look after each other. People still need community. They need each other. They need people to help each other and support each other through life. So I became in involved in Houston wasis because it’s one of those communities where we it’s a community for people who don’t have a church or that sort of community to support each other, work together, do charity work for those who want to get involved and help the world. And, you know, one of their mottos is meaning comes from making a difference and people are more important than beliefs. And I wanted a social outlet. I was looking for places where I could meet people where I could have community because, you know, coming to a new country, I didn’t have close friends, family, all those things. You’re isolated without them. So I found Houston as ISIS and found it to be a group that really makes what I believe in and the group where I could socialize with a whole lot of people and enjoy that community.
Michelle, that’s all the time we have today. Thanks so much for coming on the show. You’re welcome. Thank you very much for inviting me.