Ep. 35 – Kim Zeglinski – Autism: Now Playing In A Person Near You
- An engaging story of an adult’s diagnosis onto the autism spectrum.
- The cost of “pretending to be normal in a world where you don’t feel you fit.”
- Explanation of neurodiversity, neurodivergence and how these fit on the normative bell curve.
Kim Zeglinski grew up “pretending to be normal”. Her young son’s diagnosis of autism offered Kim insight, not only for her son but also for herself. At 43 years of age, Kim too was diagnosed on the spectrum.
In this episode, Kim shares her story, one that is common to many adults who remain undiagnosed throughout childhood and adolescence.
Kim ZeglinskiKim Zeglinski is a mother, spoken word artist, actor and school counsellor. She’s also on the autism spectrum, a diagnosis she discovered in her forties. Her story is filled with the delightful interplay of her diagnosis, her family, her counselling work and her artful plays on juggling life's challenges with humor and aplomb.
Transcript: Ep. 35 – Kim Zeglinski – Autism: Now Playing In A Person Near You
Rachel Cram – Kim Zeglinski, thank you so much for meeting with us today you’re in your studio, I’m in mine and it’s fun to have a conversation like this.
Kim Zeglinski – Zoom zoom zoom.
Rachel Cram – Exactly. We’re used to that at this point in our lives.
So, the mission of family360 is exploring life together and we host guests from a wide range of backgrounds; specialists, artists and storytellers. You Kim, could come at today’s conversation from any of those angles because you do have specialization in today’s topic and you are also an artist, but I’d love to explore your story first.
So, just before we totally jump in, still around terminology, I just don’t want to be offensive in how I use terminology.
Kim Zeglinski – Let that go because someone listening will be offended no matter what we use.
Rachel Cram – OK. That’s the way of it is it? So when you refer to yourself like do you say…
Kim Zeglinski – I’ll say I’m on the spectrum or I’ll say I’m autistic.
Rachel Cram – Ok, I will go with that then. Thank you. Let’s jump in with a question that I typically use at the beginning of interviews. It’s a question that goes back into who you’ve been as a child. And I think that’s just a great way of getting to know you better.
Kim Zeglinski – Sure.
Rachel Cram – OK. Aristotle stated. Show me a child at seven and I will show you the adult. Kim, is there a story from your childhood that reflects the adult that you are today?
Kim Zeglinski – My mom says I was born an adult so there’s that. I mean I think in terms of the adult that I am today, I’ve always been kind of eccentric and quirky and a lot of my best friends were older adults. So in school my best friends were my teachers and at home my very best friend was next door and she was a card reading, palmistry, fortune telling woman in her 70s, who I think Hungarian. And I remember my mom let me go off with her. She would take me on the bus and we would just spend the afternoon downtown and it was bizarre because I had to be under 7. So I was pretty little. I was pretty little.
Rachel Cram – But you were safe. You were safe with her?
Kim Zeglinski – I was safe. Yeah she was awesome but she was my best friend. She was a 70 year old woman next door. Yeah. I also spent a lot of time with newcomers and there was an immigrant couple who were the caretakers of the apartment block behind my back lane and so I would spend a lot of time on their front stoop. And then later in high school a lot of my good friends were the kids that were in the English additional language program at school.
Rachel Cram – Now you used the adjective quirky. Did you see yourself as quirky?
Kim Zeglinski – At the time?
Rachel Cram – Or was that in retrospect?
Kim Zeglinski – Probably in retrospect. I mean, no as a child I was just me.
I was a drama kid in high school so those were the quirky people in my high school peer group. We were the nerdy kids that we’re always in a rehearsal of some kind every lunch hour, every after school often on weekends. In those days the teachers could just you know make a deal with the custodian and get a key to the building so we would spend so much time in the theater.
And so that was kind of my world in high school. So definitely a bit of a quirky existence there.
Rachel Cram – How did that work out?
Kim Zeglinski – I was a bit of a chameleon I think. I kind of bounced around a little bit. But sports came because I really wanted a school jacket.
Rachel Cram – Fair enough
Kim Zeglinski – I didn’t have a lot of athletic abilities so I became the team manager in grade 7 or 8 something like that.
Rachel Cram – So that was your athletic side.
Kim Zeglinski – That was my athletic side. And then I joined the track team and I was injured all the time. So I spent all of my track practices on the exercise bike watching everyone else run.
Rachel Cram – Well, my first introduction to you Kim was as a spoken word actor in a piece you did for the fringe festival, your monologue about self discovery. And one of your adult discoveries is that you’re on the autism spectrum. Would autism, would that diagnosis have been available when you were a child?
Kim Zeglinski – I think it made it into the Diagnostic Statistical Manual as its own diagnosis in 1980 under the DSM 3. So I would have been 10.
Rachel Cram – And you weren’t actually diagnosed with autism until you were in your forties.
Kim Zeglinski – I was 43.
Rachel Cram – Right. So can you describe your journey because there’s a lot of people, who have wrestled with life feeling almost like they’re pretending to be somebody that they’re not. And then in older life find out that they are on the autism spectrum and everything kind of lands for them. I’m wondering if you can share how that’s played out for you? Can you even start with the time period of settling into adult life? How were you finding your place in the world at that point in time?
Kim Zeglinski – So in high school it didn’t seem to be an issue. It didn’t feel like I was that much of an oddball in the high school setting. I came from a fairly traditional approach to schooling.
Rachel Cram – Which means what?
Kim Zeglinski – I had my own desk, I had very concrete tasks that I had to complete and I completed them. And they were either right or they were wrong. There wasn’t a lot of open endedness.
In university, I went into the Bachelor of Education Program straight from high school so I was young and super excited about teaching and learning and already kind of in my element in that way. I had babysat and I mentioned that I was always friends with seniors but my other best friends were little kids. So I was always immersed in the world of young children. I took a practicum course in high school where I was placed in a kindergarten classroom and that was a really natural role for me so going into the faculty of education seemed flawless. Right. Until I hit a bit of a social wall where I realized I didn’t have a lot of friends and my boyfriend at the time I had been with for three years and that relationship ended and I just went into this crisis of what do I do now? It felt like the whole world had been ripped out from under me. I didn’t feel like I had an identity. I failed courses. It took me an extra year to finish my four year degree because I had this non year. Everything just fell apart for me.
Rachel Cram – A non year Kim. Can you describe that a little further?
Kim Zeglinski – I stopped being able to multitask. I stopped being able to keep so many balls in the air. I just felt like maybe I had taken on too much or maybe I was depressed because of the boyfriend thing. But I think in hindsight it was more than that, it was me not actually knowing my own identity yet. It was me pouring so much of myself into the identity of this guy’s girlfriend or the identity of the high achieving student. And maybe that was an example of autistic shut down, in hindsight maybe that’s what it was.
Rachel Cram – You’re talking about not knowing your own identity. I think, especially as we go through our teen years, and even our 20s, we’re really trying to figure out that question of ‘who am I’? We’re all trying to figure that out. I realize this is subjective but how much more difficult is that for someone who is undiagnosed with autism to address that question?
Kim Zeglinski – Well, in my case and I’ve heard this from others there is this phenomenon of the social chameleon and you are being like the people you are with more than you are being yourself.
Rachel Cram – Why is that?
Kim Zeglinski – It’s part of the concept of masking and trying to fit in and trying to figure out your social world. It’s almost like a sociological study. It’s like Jane Goodall sitting with her chimps.
Rachel Cram – You’re studying the people?
Kim Zeglinsky – You’re trying to figure out what is this? What is facial expression? What is body language? What is tone of voice? What is this world of social communication and all of the nuances that go with social communication?
Rachel Cram – You said Jane Goodall, is it almost like you’re studying a different species?
Kim Zeglinski – It’s kind of like studying a species. Yeah, it’s interesting. It also helps you, in my case, the social chameleonism helped me not to go to the same well too often to drink.
Rachel Cram – Because you’d shift to a new setting to try on new personas?
Kim Zeglinski – Yes.
Rachel Cram – How did that shifting help you?
Kim Zeglinski – I didn’t tire anybody out. I didn’t overwhelm as many people. I stayed people’s friends because I didn’t spend too long in any one place. I was really trying on roles.
Rachel Cram – That is hard.
Kim Zeglinski – It is. It’s about normalizing.
Rachel Cram – Well, and what does that kind of pressure to normalize do to a child, or an adult’s identity and mental health?
Kim Zeglinski – I think it just takes its toll over time. It’s hard to pretend to be normal and to be in a world that you don’t fit well into.
Rachel Cram – That’s a heavy weight to carry.
Musical Interlude #1
Rachel Cram – So what started to be an indicator to you that there was maybe something more that you could explore with who you were?
Kim Zeglinski – Well I mean, definitely early career was a big one.
I graduated and there weren’t really a lot of jobs in the city. Some of my cohort managed to get jobs in places where they student taught. I was quite surprised I didn’t. And I ended up going up north and teaching in a small community in northern Manitoba and the principal there had a history with my family. He had been a resource teacher in the elementary school where my mom was an educational assistant, serving his resource caseload. And
Rachel Cram – So it felt like he was going to be a really good fit.
Kim Zeglinski – It felt like it was gonna be a really good fit. And in hindsight this is something my mother orchestrated. So yes mothers do a lot of work for kids on the spectrum whether or not they know they’re on the spectrum.
Rachel Cram – Trying to support
Kim Zeglinski – Trying to support. Trying to support and trying to orchestrate that success and working in the background to make sure these pieces are in place. And so she did that and I ended up going up north and teaching in this small community and I felt comfortable with my administrator because he ‘knew me when’ and he knew my mother. And I think because there was a history there he was willing to invest in me.
And so things really came to a head after that very first term position was coming to a close in December and a new position was coming up in a different classroom but the same school. And he called me into his office and I thought it was to sign on the dotted line and offer me the next position. And he said, “What the heck are you trying to prove?”
And I went, “What?”
And he said, “You have alienated yourself on this stuff. You have made a very terrible first impression with all of your colleagues. And we need to fix this or you can’t keep working here.”
Rachel Cram – Did you have any idea what he was talking about?
Kim Zeglinski – No! I was 23 years old. I thought I was this great teacher. I was super excited about what I had come out of university learning. I was a product of the whole language thrust in early years education at the time and I was very excited about child centered learning and I didn’t realize my colleagues were seeing that as a criticism of their teaching styles when I would share things that I was excited about. Or when my bulletin boards were bare and an educational assistant came in and said, “How come you haven’t covered your bulletin boards yet?”
I looked around, I realized oh every single bulletin board in this building is all covered with colored paper and beautiful borders that I had neglected to order for myself and here I am in my first classroom and it looked like a dog’s breakfast because I hadn’t had any artwork to put up yet.
Rachel Cram – So looking back with the value of hindsight, what do you think your administrator was trying to tell you? What was he seeing?
Kim Zeglinski – Well I spoke to him years later after my diagnosis and I said, “Thank you for putting me through charm school. You set me up for success with colleagues in a workplace.”
And he said, “Well don’t mention it.”
But it was the hardest lens I had ever turned on myself. We looked at things like, well first of all the big blanket question, ‘How do I see myself versus how do others see me’. So he helped me with perspective taking and its perspective taking that I use all the time in my position as a school counselor and as a teacher and as a parent. I’m always helping kids who are narrowly focused on their point of view to see other points of view. That’s the irony is, through my own teaching, through my parenting, through my further studies, I’m growing as a person myself and I’m learning about all of these social skills that I was lacking.
Rachel Cram – So he laid these out for you.
Kim Zeglinski – He laid these out. I had to look at tone of voice. That’s still hard. Volume, tone, vocal modulation is a big issue with people on the spectrum and it certainly is with me. I had to look at my facial expressions and trying to read my own face. And the reaction I was putting on my face. I would react to the person in my space or the person interrupting my class flow before I actually gave the person a chance to speak and tell me why they were there. He taught me about having a neutral, non reactive pause and showing that in my body language and on my face before listening and then reacting.
Rachel Cram – So he really took the time to break it down into categories and share it back with you. You used the term ‘charm school’ which, when you mentioned that, I thought you were using that sarcastically but you actually, it sounds like, appreciated that he took the time to explain to you what was not working. And did that come as a surprise to you?
Kim Zeglinski – It did. It did. I don’t know why it did. If I really think about it I probably had those kinds of issues all the way through school and especially with peers. But I always had teachers who, like especially my drama teacher, for example, he would know when something was derailing. Maybe anxiety levels were really high. We were getting to show time, we were taking tone with each other and he would just say, “OK, what the heck’s going on here?” And get things back on track.
So I don’t know if that was him seeing my autistic traits when under stress, needing to be toned down. Maybe that’s what he was seeing?
Rachel Cram – Was there any mention of the word autism at that point?
Kim Zeglinski – No not at all. No. Not at all.
Rachel Cram – So your principal gave you this feedback. And as you were giving me that list, it seemed like a lot of feedback. Were you able to incorporate that?
Kim Zeglinski – I was. I was. However it’s not enough to undo a first impression in a lot of settings. You need a lot of grace from a lot of people to undo a poor first impression. And so I have gone from job to job to job. I have done so many things since I first graduated. I had never before this present position where I am an elementary school counselor, I had never been anywhere longer than two years.
Rachel Cram – What was the big eye opener for you that there was something more you needed to look into?
Kim Zeglinski – That came through my journey of parenting Aiden.
Rachel Cram – Is Aiden your first child?
Kim Zeglinski – Aiden’s our first.
Musical Interlude #2
Rachel Cram – So what was there in Aiden that you saw in yourself. What was he like as a child?
Kim Zeglinsky – Aiden is 19 now, and all parents think their kids are special but as a baby, he was pretty remarkable. He was three weeks old and he was tuning into things in books and making little vocalizations and zeroing in on stuff. I remember we had this little book and we would stand the book beside him when we were changing him or whatever. And he would go whoo hoo. And he was like three weeks old.
Rachel Cram – So at three weeks old did you feel like you were really rocking it as a mom? Did you feel like you had it?
Kim Zeglinski – Totally, at three weeks. Yeah we had it. No, I was not rocking it as a mom at all. From the very first moment he was born I felt disconnected from him. Maybe I was just completely sensory overwhelmed and recovering from the sensory experience of giving birth. This is all in hindsight. Again I don’t have a framework at the time that this is autism and I was in shutdown mode. I was completely turned off and trying to recover from whatever that was. And it was more than how my body felt. It was like being out of my body and watching myself on the bed try to regroup and be ready to face any kind of sensory input.
So from day one my husband had to come and get me and say, “It’s time to go see our baby,” and then I was able to go, “OK, let’s do this next thing.” right.
Rachel Cram – Which must have come as a surprise to you because you described at the beginning how much you loved being around little kids.
Kim Zeglinski – I thought I was going to be like this easy, automatic mom. It felt like the only thing I ever wanted was to be a wife and mom you know. And once I was one it was the weirdest disconnect. It was hard and it was this assault on my sensory system. I was a very shut down individual.
I was extremely volatile, angry, angry, angry, yelling, crying, really not in charge of my emotions. So in hindsight was that an autistic meltdown? Probably lots of them over and over and over again. It was tough and Aiden was remarkable. And Dave was remarkable with Aiden. And so between Dave and my mother, they took care of Aiden a lot of that time. My mom would come in every day and bathe him and rock him and feed him.
Rachel Cram – Well one of the difficulties of masked autism or being undiagnosed or overlooked as somebody with autism is that it makes it hard to know how to move forward if you’re interpreting a situation like you’re just describing now as postpartum, when actually it could be social shut down.
Kim Zeglinski – Yeah. I just want to clarify like masking, masking is a coping skill; it’s a coping mechanism. Many people on the spectrum, both diagnosed or undiagnosed, mask well.
Rachel Cram – What does masking mean?
Kim Zeglinski – Masking is faking it. Masking is passing as neurotypical, what society deems to be normal functioning. And in the autism community we use NT or neurotypical to describe non autistic individuals. And so I was really good at masking. But where do you unmask? You unmasked at home where it’s safe to have your little hissy fit or your meltdown or whatever or you’re shut down. And so when that mask that you worked so hard at keeping on in your day to day comes off, unfortunately that also means very often that you’re bringing your worst self home to the people you love.
Rachel Cram – Well I would imagine it’s an exhausted self.
Kim Zeglinski – Yeah, yeah, yeah. It’s an exhausted self. It’s pretty overwhelming. Yeah.
Rachel Cram – So you had this amazing three week old child in Aiden. He was stunning you even though you did not feel you were measuring up as a mom you thought you were going to be. So where did things go from there with Aiden?
Kim Zeglinski – He was a really amazing little kid. I mean aside from the fact that he hardly ever slept and needed to be held and rocked constantly, he was incredible. Like by age 1, oh my goodness.
He had this little wooden alphabet puzzle and he could name every letter. He could recite stories. He read really young. But there was something off about his sensory overwhelm and his hypersensitivity to things like he was really almost like a superpower. He was really able to sense things like thunderstorms were coming. Or he would scream and scream in the backseat and we didn’t realize that what he was screaming about was the sun in his eyes. It was really painful for him.
Rachel Cram – Did you attribute that to a sensory issue for him?
Kim Zeglinski – Not yet. I mean we made accommodations naturally because nobody wants their kid to scream. So we figured out, oh maybe if we put sunglasses on him when he’s in the back seat this will help him, and it did. It did help him.
But socially, he would melt down like crazy if anyone was in his space. I would bring him to a party and he couldn’t be in the loud area where all the adults were. He wanted that one on one adult attention all the time and he was insatiable.
Rachel Cram – So what would he be doing that made you feel that you could not override a two year old.
Kim Zeglinski – Oh, his tantrums were unlike any two year olds I had ever dealt with.
Rachel Cram – Describe them.
Kim Zeglinski – They were the biggest, loudest, oh, screaming blue, unable to catch his breath and they would last a really really long time. And he was so inconsolable if anything happened that would derail his expectation of whatever was going to happen.
Rachel Cram – And how often did that happen?
Kim Zeglinski – I don’t know. I don’t how often. It’s all a blur when you’re in it. Definitely weekly.
Rachel Cram – Well, and that’s stressful, for any parent. What did you wonder about at that point in time?
Kim Zeglinski – Well, he had started some kinder music stuff. We belong to a church, and anytime there was music, it was quite acceptable for kids to go up and dance in this particular church community. And he would just spin in circles and spin in circles as long as music was playing. So that was one of the traits that I was reading about that could be a spectrum trait. And my mom was an educational assistant in a behavior support program at the time and she said to me,“I think Aiden might be on the spectrum.”
And I said, “Oh my goodness, I’m so glad you think so too.”
Instead of having this conversation of denial it was just, Oh I’m so glad someone else is seeing this.
Rachel Cram – Describe that for me. What’s the relief in that? Because I think some people can listen to that and feel very insulted that somebody would think their child was on a spectrum. Why was that a relief to you?
Kim Zeglinski – It was a relief to me because I was thinking this way and I knew that going forward he was going to probably need supports in a larger group setting if he needed the kind of one on one support I was providing him in small group settings. He was in his own world. You could tell even then that he was different from the other kids.
Rachel Cram – So Aiden was diagnosed with autism.
Kim Zeglinski – Eventually
Rachel Cram – As your mom had suspected. What did that prompt in you? In who you started to see yourself to be? How was that a little bit of an eye opening experience for you?
Kim Zelinski – Well in the readings that I was doing and in the conferences I was attending, I thought I was just gathering information about students I would be teaching or about raising Aiden who I suspected was on the autism spectrum. And so I went to a few conferences.
Rachel Cram – Looking to get help for Aiden.
Kim Zeglinski – Looking to get help for Aiden. Just hungry for the information. In hindsight it was my autistic special interest to be interested in autism.
Rachel Cram – Well, is that a characteristic of autism? That you tend to have a special interest?
Kim Zeglinski – Yeah. I mean, stereotypically people you know used to call it savantism or they used to use that archaic term idiot savant years and years ago right. So it’s kind of that same thing though, you have a special interest. And that special interest may be a healthy one and it may be an unhealthy perseveration where it’s a loop and you just can’t get off of that loop right.
Rachel Cram – For you it’s gathering information.
Kim Zeglinski – For me it was gathering information about autism at the time anyway, that’s what I was into. And I’m still pretty into that. I would say that’s pretty common for people on the spectrum to want to learn more about other people on the spectrum because you’re excited. You’ve got a framework finally right.
Rachel Cram – So you did decide to pursue going for a diagnosis
Kim Zeglinski – Yes and part of why is because I had never been anywhere longer than two years, So I moved around a lot. Term position, never offered a permanent, that kind of thing.
And when I had Aiden and Jude I went back to work as a reading recovery specialist and I really thrived in that one on one environment. That was insight into myself and my functioning. So I wanted to pursue other areas where I could continue to specialize. So I knew that I wanted to go back to university. I suspected I was autistic myself and I decided to pursue the process of diagnosis because I had heard about this cool thing called academic accommodations and I knew that there was no way unless I stopped everything else that I was going to be able to be a student.
Rachel Cram – So you had a practical reason for it.
Kim Zeglinski – I had a practical reason for it.
Rachel Cram – It’s very complicated isn’t it
Kim Zeglinsky – It’s very complex
Rachel Cram – Because there’s no blood test for autism.
Kim Zeglinsky – No, there’s no blood tests for autism but you know, I went to two conferences that were specific to women on the spectrum. I also attended one by the author of Pretending To Be Normal, Liane Holliday Willey, and she was diagnosed late in life too after her daughter was diagnosed. And I went up to LeAnn, that’s another thing that happens at conferences when you are on the spectrum you’re the first one in line to talk to the speaker because you just think you’re out for coffee and they’re talking to you. Doesn’t matter that there’s a room of 500 people.
Rachel Cram – Well, it got you up to talk to her.
Kim Zeglinsky – So, I went up to talk to Liane Holliday Willey and she greeted me with, “Hey Aspy,” which is short for Aspergers and that was one of the ways she identified herself at the time. And she saw me. She saw me.
Rachel Cram – She saw it in you.
Kim Zeglinsky – She saw it in me. It’s like, when you know what you’re looking for, it’s like having that brand new car and everyone’s got the same make and model on the road, you just kind of know what you’re looking for and you see it in people. And some of it is bias but a lot of it is insight.
And just that, “Hey you. I know you, I see you. I recognize you.”
And I was motivated to pursue a diagnosis. I had luckily, a medical plan and was able to fly to Toronto. And by the end of this thorough assessment,
Rachel Cram – You had a diagnosis.
Kim Zeglinsky – Yeah. Yeah.
Musical Interlude #3
Thanks for listening to family360. Today we’re with Kim Zeglinsky as she shares the story of discovering her place on the autism spectrum.
Our next episode is with Australian Music Therapist Allison Davies, whose decades of study and work offer wonderful insight and instruction for a powerful practice she calls “Brain Care”.
And now, back to our conversation with Kim as she describes discoveries that unveil after a diagnosis.
Rachel Cram – What does having a diagnosis do for you Kim? How does that change the relationships that you have with people, like your husband for example, like with Dave?
Kim Zeglinski – I think, I think it just gives a framework. So if I’m having what seems to be an unreasonably angry reaction to something, I can say, “It’s not personal. This is just me melting down. I need a break you know or I need some recharge time.”
I don’t like to think of myself as needing support but I mean I do. I have a lot of support.
Rachel Cram – So for Dave, when you’re getting upset and angry, what has it changed in Dave? Like do you see a change in how you relate to each other with having the diagnosis? Does it give him a greater understanding? More patience, more grace?
Kim Zeglinski – He’s kind of like having an in-house educational assistant. He’s an outside lens that can feed back to me. He steps up and just takes care of a lot of that executive functioning stuff.
Rachel Cram – Because the executive functioning is tricky for you?
Kim Zeglinski – Especially in the morning, like I can’t even see my way to get off my phone and make my morning coffee and then suddenly I’m not dressed and I’m late for work and I haven’t eaten yet. All of that stuff Dave just takes care of first thing in the day for me when he’s home.
Rachel Cram – Because for you it’s not a matter of just pull up your socks and do it?
Kim Zeglinski – No, I’m in slow motion. I can’t do it by myself. But looking back, I was like that when I lived alone in my own apartment and didn’t have anybody taking care of me. That’s how I looked. That’s how I functioned and then finally it’d be 2 o’clock and I’d go, “I haven’t eaten yet today. I should eat something. Oh, I need to go to the grocery store.” Everything happened between 2:00 p.m. and 8 p.m.. That was my day.
Rachel Cram – So when you’re in a relationship with somebody and when you’re parenting together and raising children, obviously autism can create some extra levels of complication in that. Have you and Dave taken ongoing education in how to support one another?
Kim Zeglinski – I’ve noticed a book on his shelf about autism in the spouse or something or marriage and autism. I don’t know the book title but he’s definitely done his own research.
Rachel Cram – Our listeners may want that title.
Kim Zeglinski – Yeah. I’ll have to ask him the title. He’s definitely done his own research and there’s so much information online and reading material particular to women on the spectrum and it just gives such a framework for how to support people.
Rachel Cram – You talked about the administrator that you had when you went up north and how he put you through what you called charm school.
When you started with a new administrator, did you tell that new administrator about your diagnosis right from the beginning?
Kim Zeglinski – I do and I have done and that’s a very
Rachel Cram – And how does that help?
Kim Zeglinski – Well it’s a very personal choice I want to say. Some people choose to disclose and some people don’t. People say it’s an invisible disability. I don’t know how invisible it is really, because when things are under stress, as they often are in a school setting, you know, you might not behave at your best in the staff room for example. You might choose to eat your lunch in your office. You might choose to not participate in the social life of your school and that’s self-preservation. That’s your way of recharging right. And all of that stuff might be seen as, “Oh they don’t want to be here. Oh they don’t want to be part of our staff. Oh they’re not a team player.”
And so in my case, I chose to disclose right from the get go, especially I think because I was going into the role of school counselor, when I was interviewing I chose to disclose that I am on the spectrum and I see part of the role of the school counselor in the elementary setting to help kids with their social world. And the social emotional wellness of elementary kids, oh my goodness, talk about a plethora of undiagnosed quirky children all coming through the counselor’s door or the resource teacher’s door or having meltdowns over things over and over again with their peer group at recess time and the heartbreak that comes with that.
Every elementary school needs an elementary school counselor who knows about the spectrum because kids don’t come with a diagnosis anymore, necessarily at all. But you still have to deal with making their world OK and making them feel OK in their world.
Rachel Cram – Well and now we know that about one in 80 children are on the autism spectrum.
Kim Zeglinski – Is that the number now?
Rachel Cram – Yeah. What do you think it is?
Kim Zeglinski – Oh I don’t know.
Rachel Cram – What do you think it is?
Kim Zeglinski – I think it’s more than that.
Rachel Cram – Ok. And that would be diagnosed right. So of course in a school you’re going to have children that are really struggling.
But can I just back up to say, with your administrator, when you’ve told your administrator that you have autism or do you say I have autism or you say I’m autistic?
Kim Zeglinski – I think I say I’m on the spectrum.
Rachel Cram – On the spectrum. You were mentioning what Charm School put you through,that you were being told about your facial expressions, your eye contact, your body language. My guess would be that that still is who you are. So does that give your administrators now the ability to understand you differently and your co-workers to realize that they should not interpret that as your disinterest or can they see past that to the compassion, the warmth, the care that you have, the joy that you have in your job?
Kim Zeglinski – I think my current administrator sure can but it really depends on the administrator right. I have found a good fit and this person is able to support me and honor the psychological accommodations that I come with that say, ‘nature of work and scheduling need to be considered’.
My principal also honors the accommodations I have on paper and understands that I might not do well on certain committees or I might not do well in a staff meeting. But she will pull me into her office and it’s more of a need to know basis and she will dispense to me the information I need in order to function optimally in my role. If I know the inner workings of the entire machine, I’m down a rabbit hole and I’m anxious and I’m trying to solve problems that aren’t mine to solve.
Rachel Cram – And you need people to catch you when that starts to happen.
Kim Zeglinski – Yes very much so.
Rachel Cram – Kim, you began our conversation talking about ND, which is neurodiversity. There is an understanding now that we are all neuro-diverse but that some people are neuro divergent and I think that’s an even broader category than autism. Is that correct?
Kim Zeglinski – Yeah, you can think of it as an umbrella term that catches a whole plethora of diagnoses. There’s a lot of intersectionality no matter what your label is if you are neuro divergent. If you are seen as other than neurotypical.
Rachel Cram – Kim, what would be categories or definitions that fall under neuro divergent and then, how do they play out in schools or in society?
Kim Zeglinski – Well, the way I see it and the way I make sense of it is we’re all neuro diverse. We all perceive our worlds differently. There is a chunk in the middle, if you think of it as a bell curve, there’s a chunk in the middle of the bell curve because this is how our society and our systems are set up and they seem to be just fine and they’re what some people will call ‘the norm’.
Rachel Cram – Because that’s where most people lie, in that section of the bell curve.
Kim Zeglinski – Yes. So you’ve got your middle section of the bell curve and then you have your exceptionalities on the outer edges of the bell curve and that’s where neuro divergence comes in.
So you might see ND and it could stand for neuro diverse, neurodiversity, or neuro divergent and autism is an example of neuro divergence, different from the norm. But there is a whole group of, I call them our neuro cousins. So kids, in my counseling practice, some are diagnosed, some are not, and maybe this is my bias but what I see as autism traits, kids often have on paper ADHD as their official diagnosis. But they share traits. And the strategies are the same. And they’re not getting an educational assistant in most situations anyways so, let’s just learn to deal with these beautiful human beings and help them to feel connected and have role and purpose and friends and help them to thrive in their school settings.
So, there’s definitely intersectionality between autism and ADHD. I have both diagnoses actually, I have ADHD and autism spectrum disorder and sometimes I’ve tried ADHD meds and they have helped me get through those very very busy times.
I’ve heard of a lot of people who say they’ve been misdiagnosed in their teens or young adults as having bipolar disorder. That makes sense because when you’re in an autistic crisis you might come to your psych services and you’re not optimally functioning, you’re having a mental health crisis. So it doesn’t surprise me that some people might first come away with a diagnosis of a mood disorder and then tease out through therapy and a psychologist/psychiatrist who knows what they’re looking at in adults and goes, “Oh this is autism,” right. It’s pretty common.
Rachel Cram – And is that because they just haven’t had the support they need in place.
Kim Zeglinski – It could be that they’ve been very unsupported. Yes.
Rachel Cram – And so this is part of why diagnosis is important.
Kim Zeglinski – It helps with the supports and it helps with a framework so that you can cultivate a life and a life’s rhythm that embeds the supports into your lifestyle.
Musical Interlude #4
Rachel Cram – Kim, you’re talking about the bell curve, the norm and the outer edges of the norm. And on those outer edges terms like ‘disorder’ and ‘disability’ are often applied. Those terms suggest a need for a recovery or cure. How does that play out in your head?
Kim Zeglinski – Under the social model you’re not looking for recovery or cure, you’re looking for acceptance. Too many people frame autism as something that needs to be cured. And I am not negating the various expressions of autism that can be better supported. I’m not negating the real struggle that some families and individuals are experiencing. Please don’t get me wrong there.
But I think this isn’t about curative or therapeutic approaches so much as it is about accepting diversity, accepting divergence and under the social model of disability, disability is an identity to be proud of.
This is autistic pride coming from me. There’s a lot of intersectionality and parallels coming out of what’s collectively known as gay pride, in disability pride movements. And I really recommend that people look at disability not as something to be fixed but just as human variation, human expression. These are all the beautiful colors of our human existence.
Rachel Cram – Well said Kim. Thank you. Can I ask, from your perspective, do you see progress with acceptance and inclusion?
Kim Zeglinski – Well you’re talking to a theater artist right now and there’s not a lot of representation yet. There are roles created or written for disabled characters for sure but those characters aren’t necessarily played by disabled actors. So there’s a ways to go. There’s definitely some efforts, there’s disability casting statements for example. There’s disability and diversity hiring practices, at least on paper. I don’t know what it’s like in action yet but, OK let’s use this as an example; why would someone who uses a wheelchair only have to play a character who uses a wheelchair? Why can’t that person play a lawyer, or a teacher? The fact that they happen to be using a wheelchair is completely insignificant. It’s just a matter of upping the visibility that these are all people in our society. This is about inclusion.
Rachel Cram – Well, and it really would help if it was reflected like that in the media. And we’re such a long way from that point. That kind of inclusion. Which is isolating. So maybe I can ask this as a last question Kim. If someone is listening to this and they’re thinking, “I feel like I might fall onto the spectrum because I have so often felt in life that I don’t fit, I see people around me as a different species. I sense that I don’t belong.” What would be a suggestion that you’d offer? What would be a hope that you’d offer?
Kim Zeglinski – There’s a lot of community out there first of all. So seek out your community based on your hunches. Don’t wait for official confirmation. Don’t wait for official diagnoses. We live in this world of labels and the medicalized model of disability. And the autism community is trying so hard to shift that to what’s called the social model of disability.
And if everyone were supported and lived in a society where everyone just got where they needed it wouldn’t necessarily be a disability right. And you can accept that from the point of view of physical disabilities. We all know that architecture needs modifications to design in order for it to be accessible.
Rachel Cram – Wheelchair ramps
Kim Zeglinski – Right. Like we don’t think of that necessarily in terms of supporting this huge plethora of other disabilities that may be less visible. We can’t wait for the system to have enough money or have enough supports or whatever it is to slap a label on a kid before we do something for that kid. If you are a teacher, if you are a parent and you see that your kid has some support needs, support those needs.
You have to be a bit of a detective to figure out how to support those needs. But there’s community everywhere, like tell your stories, go on some online forums, read some books, attend conferences, pick up some podcasts such as this one. Learn your story, tell your story, and go at it from the level of kindness and humanity and we all need a little bit of support sometimes.
And under this social model of disability, we don’t have to wait for someone medical to slap a label on us in order to have our needs met. We just have to know what those needs are, express them and have them respected.
Rachel Cram – Ok, I think we’ll close with that. Kim I thank you so much for your time today. For the thought that you have poured into this conversation and for your heart to really help other people move into the freedom that I think you’re experiencing now in your life.