What an Autistic Adult Wants Parents to Know About the Growing Up Years

Episode Transcript

Dr. Nicole Beurkens: 

Hi everyone, welcome to the show, I am Dr. Nicole, and on today’s episode, I’m going to have a conversation with an autistic adult about the experience of growing up autistic, but not knowing it until adulthood, experiences in adulthood thus far and what it might be helpful for parents and professionals to know about how to best support people with brain-based differences throughout the lifespan. I have had the pleasure of knowing Sarah now for many years, and I’ve learned so much from the things we have discussed over time. I think you’re really going to enjoy listening in on this conversation, and hopefully taking away some things that you can apply in your parenting and/or work right now. Let me tell you a bit about Sarah.

Sarah Frisch is an independent, agender, autistic adult. Since their diagnosis in adulthood, they have earned a BA in Psychology and pursued a career in autism consulting. They work with parents and other autistic people, as well as organizations like Autism Support of Kent County, and the Department of Defense’s Autism Research Program. When not expanding their understanding of the many and varied experiences in the autism spectrum, they enjoy gardening and foraging for wild food, as well as spending time with their spouse. Sarah, welcome to the show, so great to have you here.

Sarah Frisch:

Thanks Dr. Nicole, it’s great to be here. 

Dr. Nicole Beurkens: 

There are so many different directions we could take this conversation. You and I have had many amazing conversations over the years, so I’m going to try to keep this contained to our 45 minute episode format here. We’ll see if we can do it, because each time you and I talk about these things, it’s just like — All of the amazing things that come up. So I would love to start by actually having you talk about your experience as a child because as I mentioned, kind of leading up to the episode, we’re going to get into your experiences as an autistic adult, but you weren’t diagnosed until adulthood. And so I’m curious to have you do some reflection now about your experiences growing up, going through school and not yet having a diagnosis.

Sarah Frisch: 

So there’s a meme on the internet. It’s an older one. It’s sort of this sort of rocky looking person, just the face, and it’s got just tears falling down and it says “Forever Alone”. That was me up until the middle of middle school. I wasn’t crying all the time, I was mostly angry, actually because no one understood me, and I didn’t really understand them. It didn’t go well. So I understand that a lot of people get bullied in middle school. I got started early. I got started being bullied, I want to say kindergarten or first grade, and that continued until I moved away. So yeah, it was not exactly a fun childhood. I don’t mean to throw shade on my parents. They did their best, but not knowing what’s going on means that you no one understands you, you have nothing to hold on to, you just kind of put your head down and thrust forward. That is the story of my childhood, pretty much. 

Dr. Nicole Beurkens: 

And I have to imagine there’s a particular challenge around being in typical classrooms, being viewed as — okay, you’re someone who is doing the school work, you’re in the mix of “the normal school experience”, and yet, as you’re saying, you really didn’t understand or connect to, or weren’t brought into all the other things that were going on. I mean you did school, you got through school, right? You got your high school diploma, like the school part of it, the academic part of it doesn’t sound like it was the issue. It was all the other stuff, right?

Sarah Frisch: 

Yeah. And to be honest, I was fortunate. My parents are relatively intelligent, so I got some of that from them. That doesn’t necessarily win you any friends, but at least gets you through the academics. But yeah, I didn’t really start having friends until I got tossed into a — they call it a “friendship room”. And it was supposed to be to help people that were, I guess ostracized or new to the school district find friends. And as it turns out, a couple of those people — so fraternal twins, would later be diagnosed with autism, we got along okay. It wasn’t perfect.

One of them had a temper and I didn’t get along with her so well, but the other was a lot more withdrawn, I guess. And I got along with her pretty well. So yeah, we spent some time getting to know each other, which wasn’t a friendship that really clicks in the way that autistic people can sometimes — like they share the same hobby or interest, they can really have this powerful friendship where they really understand each other. It wasn’t really like that. But they did eventually, in my freshman year of high school, bodily shove me across the gymnasium floor to sign up for the anime club, or anime as we westerners tend to say. And that went pretty well. The people there were far more accepting of strange people, shall we say, than most of the rest of the school so that was nice. It was nice having then a sort of a place that I kind of belonged. 

Dr. Nicole Beurkens: 

Finding a niche, finding a fit there with other people was key, and unfortunately, it took quite a lot of years of going through school for that opportunity to happen for you. 

Sarah Frisch: 

Right, and that actually only was able to be a thing because we stayed in one area for six years. A lot of my life, especially post — I’ve had two elementary schools, two middle schools and two high schools. Only one college. I put my foot down, you know, I’m done. But yeah. We moved around too much for me to really be able to get past the translation barriers that are from both sides. Autistic people tend to communicate in ways that are different than expected, and neurotypical people, likewise, communicate differently, but the communication barrier is on both ends. Both sides have to try to meet in the middle. And usually, neurotypical people aren’t willing to do that because either they don’t know how to or they don’t know that they need to. They’re so used to expecting a certain set of standards that having to face a different set of standards is just too challenging. 

Dr. Nicole Beurkens: 

Well, it’s really the centering of the neurotypical experience, right? That the assumption is that everything should operate the way that neurotypical people operate and communicate, so it’s anyone outside of that that needs to change how they’re operating. It’s not that we on the neurotypical side need to do anything, right? That’s really unfortunately how it works. 

Sarah Frisch: 

Right, the majority rules, even if that’s not necessarily ideal for everyone in the majority. Something I’ve noticed when we make changes to help people with disabilities or people that are on the margins, often a chunk of the majority is also helped by those things. The cuts in the curbs, for example. That makes it easier for people with wheelchairs, but it also makes it easier for people with walkers and bikes.

Dr. Nicole Beurkens: 

Yeah. What we consider the “norm“ is really such a tiny slice of the population, right? Yeah. I think that that’s so true. I want to go back for a minute. First of all, all the moves that you made and all the having to start over with understanding the norms and the people involved and all of that, but you talked about just this being disconnected, like not getting what was going on, not being a part of that. Can you talk a little more specifically about your experience of that? For example, were there sensory components of that? Were there perspective-taking or relational components of that? Communication components? What were some of the things, if you can recall, that made it so challenging to just be part of the mix of what was going on or to really understand all the things going on around you? 

Sarah Frisch: 

That’s an interesting question. So part of it, I think, is that people communicate on a spectrum. So there is someone into the spectrum, there are people that expect you to listen to every word that they’ve said because they’ve chosen their words very carefully. That’s where I was, I was in the far end of that. Then on the other end, there are people for whom the words aren’t really that relevant, they’re just there to shape the overall understanding, and then what’s important is the emotion that they’re expressing. And it’s rare to find people on either end of that spectrum. Most people feel in the middle somewhere, but I was very much on the “listen to what I say, not how I say it” end of things, and that made communicating with anyone that did the emotion side of things very difficult, because I was missing it. I was missing all of it. I don’t think I was completely oblivious to emotion. I think I could tell if people were angry, but that’s got to be at least one of the major components to it. Another thing is that I don’t think I had a good understanding of how to do light talk. Talking about the weather or talking about a test which wasn’t crucially important.

Dr. Nicole Beurkens: 

Like chit-chat.

Sarah Frisch:

Yeah. The sort of gentle — the thing that you start with to build a relationship, I wasn’t interested in or very good at.

And I think I eventually had to ask my mother how to do that, which thankfully she did teach me, but I feel it was a bit too late for most of the places I’ve lived. So that got in the way. It was a lot of things all at once. It’s kind of hard to pick it apart. I spent most of — I gave up on making friends for the most part in my second high school where I just sort of spent my time watching people instead of trying to interact with them, which taught me some things that made it easier when I went to college, and it made it easier with the very few people that I bothered to talk to. But yeah, I can’t pick it apart further than that. At least not off-hand, it was a lot of things all at once.

 Dr. Nicole Beurkens: 

Well, I think just that, it was a lot of things all at once to take in and try to make sense of, and probably felt pretty overwhelming a good amount of the time. 

Sarah Frisch: 

Yeah, that would be fair to say. It was very much hunch, keep walking forward and this day will be over at some point, and then tomorrow will come, but not until you have time to yourself at least. 

Dr. Nicole Beurkens: 

I’m so glad you said that because I think that moment of insight, that you just shared there, I hope that parents and professionals, everybody listening really hones in on that because I think there is such a misunderstanding of that for so many kids. It’s like why are they always keeping to themselves or head down or that they get home and they just want to spend time by themselves? And you’re like “This is literally what I needed to do to get through each day”. 

Sarah Frisch:

Yes. I was exhausted and typically angry and just tired. The academics still cost me some effort. Not as much as other kids, but they did. If it was just the academics, I probably would have been happy. But it was not. It was dealing with kids that made fun of my backpack, which I had stopped caring about them, honestly. They were just foolish little human beings that I hope have grown up to something that doesn’t spend their time doing that. But just getting through random comments, people making up gossip about me, just whatever they could do to find something to amuse themselves with because I guess everyone was miserable. Including me, but at least I didn’t take it out on others.

Dr. Nicole Beurkens: 

Yeah. And that feeling of just real tiredness, I think all the way around: Mentally tired, emotionally tired, physically tired. That is tiring to have that experience day in and day out. 

Sarah Frisch:

I mostly didn’t have an active childhood, so I want to say I was mostly just emotionally completely exhausted and mentally tired out. So yeah, instead of going home and talking to my parents or whatever, or trying to play with my brother — he didn’t know anything anyway, but I could have tried. I basically just went to my room and did my homework, and when I was done with my homework, I put my nose in a book. I was always carrying a book with me. I was a very antisocial child in some very important ways. That was as healthy for me as I could get. I found a lot of comfort in my books.

And if my parents had been yelling at me to go hang out with other people, I don’t know, I may have even gone to Boy Scouts or Girl Scouts, I guess I went to Girl Scouts, I can’t imagine it would have gone well. They were thankfully more hands-off than that, and just allowed me to exist as I chose, but I can’t have imagined. Some parents would probably just look at that and go “My child is not getting sufficient socializing/my child is not going to grow up right or whatever”. I really needed that time. I really needed that time to just decompress, and it took the entire rest of the day. I still got my work done, but it took all of the day after school to get back to a state thatI can still go to school tomorrow. 

Dr. Nicole Beurkens:

Thank you for sharing that. I think that’s so profoundly important for people to understand. You said “I was very antisocial with my nose in a book”. I look at it, and you and I have talked about this before, that you were having to figure out how to protect yourself, how to cope. You didn’t have anybody helping to guide you with things. You did the best you could to problem solve and to figure out how to regulate myself and keep myself okay. Really, that’s the story of your life, it’s that you had to try to figure things out and solve your own problems as they came up, right?

Sarah Frisch:

Yeah, that was pretty much it. My parents did their best, bless them. But they also had their own issues. It was my dad’s job that was bringing us from this state to that state, at this point I had lived in 5 states and most of them in the middle school to high school range of things. They were busy. They had their own stuff going on. In some cases, I wish they had taken better care of themselves because I guess maybe they were just kind of doing the same thing I was doing with the hunching and the moving, [ph “channeling’ 0:17:21.2] they didn’t really understand, I guess, in some important ways. And I barely had friends, so yeah, it was just me. 

Dr. Nicole Beurkens:

Very alone.

Sarah Frisch:

Yeah. So I had a journal. This will date me a little bit in the future. I had a LiVEJOURNAL, which I was introduced to by some friends in the one high school that I had friends in. So I spent a lot of time crying at that, which is a pretty safe place to have feeling at because you can set the entries to private or you could set the entries to private or you could [inaudible 0:18:34.7], so I did a lot of thinking and parsing that way I feel like that was pretty beneficial. I am positive that if I went back and read those entries, I would be deeply annoyed with myself. But that’s what being a teenager is for. 

Dr. Nicole Beurkens:

That’s right. I think we all have many of those experiences of looking back on our preteen and teen years and being deeply frustrated and disappointed with ourselves, but I love that you channeled that. You found an outlet and a tool, and really that did become a tool for you to start to dissect and understand other people and some of the things of how you were being perceived and how you could do things differently. You’ve really spent a lot of time over the years analyzing people and their behaviors and interactions to see: How can I do some things differently or connect with people differently? 

Sarah Frisch:

Yeah, the autism pattern recognition trace is one that I have, and as it turns out, you can turn that on how people expect you to communicate. It took me the better part of a decade, maybe even a decade and a half, really. And I’m still learning, I’m just not as focused on it now as I was then to figure out what was expected and what didn’t, and how to connect with people emotionally as well as with the words that you say. So it’s an ongoing process. Language itself is changing. I didn’t spend a lot of time on the internet when I was younger, but that was where I found some of my first friends. The way I would communicate to start with was this very perfected English, stilted — like no one talks like that. No one communicates like that in such informal letters. So it’s been sort of a process to learn to not correct people when they use the wrong there/their/they’re and various homophones and things like that.

Dr. Nicole Beurkens:

Yeah. All of the hidden, not directly taught aspects of human communication and interaction, that when you are on the spectrum, do not intuitively occur to you. You don’t notice them, your brain is processing that input in different ways and so, you really do need to more explicitly go through and figure that out. And you had to do that on your own, which you — you have always, in the conversations that you and I have had, and even today, you’re saying your parents did the best that they could. And one of the things I think to point out is you are in your 30’s now, and you were not diagnosed until you were in your 20’s, correct?

Sarah Frisch:

Yeah. 20 and three quarters, I think is what the thing said. 

Dr. Nicole Beurkens:

Yeah. So that was an additional piece too. Now, children tend to be diagnosed much younger, which we can have a whole episodes just about the pros and cons of that and the downfalls of diagnosis and the benefits, and that’s a whole conversation in and off of itself, but one of the things that it does is puts it on the radar for parents and for teachers and other people that this is a person who may benefit from some supports or some different ways of understanding them, and you didn’t have the benefit of that even for yourself, for having a way of understanding what was going on for you until you were 20. 

Sarah Frisch:

Right, and by that point, it was much, much too late for almost everything that’s typically offered to an autistic kid. So I can’t speak from personal experience to what it’s like to have the diagnosis from a younger age because I just didn’t, but I would tend to encourage people to seek the diagnosis, unless you don’t think it will be helpful in any way. And tell your kids as early as you can in ways that they will understand. Like “Sarah is different. They prefer to read books in their room when they get home from school.” Or just maybe “Sarah doesn’t always communicate clearly in words”, or “Sarah is a little tone-deaf to whatever is appropriate for kids’ development.” It’s complicated. I’m not a parent, I can’t give great parenting advice, that’s what you are here for, Dr. Nicole. But not knowing — I knew that I was different, but I always assumed that it was a bad different, and it’s not. It’s just a different different. But because you’re never fitting in, because people are never understanding you and they don’t really have any way to do so, it’s just bad. You’re just being snapped at, you’re struggling forward and your efforts aren’t being met or understood with any level of care, I guess. 

 Dr. Nicole Beurkens:

I’m curious: What was the experience of that like for you at 20, getting diagnosed. Was that a relief? Was that a shock? Was that distressing? Do you mind sharing what that was like for you?

Sarah Frisch:

That’s a good question, and it varies by the person, actually. For me, it was really distressing, at least to begin with because I had spent probably 15 years at that point — it’s debatable when I started noticing that I was different, but I had spent 15 or so years trying to be what people wanted me to be and the diagnosis was sort of like “That’s it. You are irrevocably different. There is nothing you can do about it.” So after the initial disbelief, like look at the DSM-IV4R and go “This doesn’t describe me. What is this talking about? This is ridiculous.” It was ridiculous. The DSM is a very strange piece of work. But meeting other autistic people and going, “Yeah, we have some things in common here. The DSM doesn’t really touch on any of this, but we have some things in common here.” So yeah, as soon as I got past the “This is not me, what are you talking about?” phase of things, then I was able to move on to the “Okay, well if this is me, what does this even mean?” And that’s kind of where I still am because the autism spectrum is a very, very broad thing. I’ve met people that don’t communicate as fluently as I do and they are just as valid of people as I am. They just don’t get to communicate in a way that most neurotypical people find appropriate. Their communication, however they do it, is still valid. It’s just harder to understand. So there’s dealing with that aspect of things, there is dealing with the various complications, medical or otherwise. I have, as things go, relatively mild symptoms for digestive issues and depression. I have a low grade depression. It’s not major depression, it’s not bi-polar. It gets more complicated, as these things do. There’s a lot of that throughout the spectrum.

There are people that have horrible reactions if they eat dairy and gluten, and I mostly just kind of get more depressed and withdrawn. It’s very mild and completely avoidable. I’ve never noticed, none of us really noticed. So the spectrum is this very, very broad thing. So trying to speak for everyone at once is impossible, but learning as much as I can about the problems of people that have my diagnosis, I think is very important because if I have to speak for all of us, I should at least try to speak for all of us, not just me. 

Dr. Nicole Beurkens:

I think that’s such a valid point, and I want to get into some things around the neurodiversity movement as it relates to that in a moment, but I want to touch on — you said the autism spectrum is so broad and so varied, and I think that’s so true. And you and I have had some really good lively conversations around our opinions on the diagnosis of autism sort of becoming a dumping ground of sorts for people with all kinds of issues, and it does. I loved what you said about how you opened the DSM, you read the diagnostic criteria and you were like, “Well this isn’t me, but maybe this is sort of me”, and then you met other people with the diagnosis and you were like, “Oh, I’m like them, but we have this hugely wide range”, and I think that’s one of the things that are so challenging for parents, especially when a child gets diagnosed, or even for individuals themselves or for teachers or whatever, if you find out “I’m going to have a child diagnosed with autism in my classroom”, you don’t even know what that means until you meet the child, right? So I’m just curious if you’re willing to share any of your thoughts around that.

Sarah Frisch: 

Well the common phrase comes to mind that if you’ve met one person with autism, you’ve met one person with autism. It really is a question of just meeting the person that you’re needing to deal with. There are a few people that I know of that can’t really hold a conversation, but it’s all the same diagnosis code. So on paper, you have no idea that I married my spouse and I drive a car regularly, it’s my car. My spouse and I have seperate cars, this one’s mine. You have no idea that I can hold a fluent conversation with you, unless I’m very, very upset. There is a bundle of things that have been thrown in with the definition of autism that I don’t personally feel a part of.

So my digestive issues for example, the gluten and dairy things, those are not mentioned in the DSM, and I would argue that even if you took them out of me, I would still be autistic. I feel that the definition of that is more that this is the way my brain works, and it’s the way my brain developed. And no amount of medication can fix that, and it shouldn’t be fixed. There is a difference between trying to change who a person is, and trying to make it so they don’t suffer so much. And for me, eating better or getting more exercise, avoiding dairy, getting all of my vitamins — that’s very different than say in ABA Clinic where they would literally try to make me [inaudible 0:30:27.1] or I don’t know, some kind of social training where my natural impulse to — I used to flap my hand when I was little, for example, I guess, and that was a stress thing. Some people flap their hands because they’re joyful, which makes it, in my opinion, doubly more important that you let them do that, because you shouldn’t be suppressing joy, even if it looks really strange. But also, you shouldn’t be suppressing stress response because if you do so, that just makes it worse on the person. 

Dr. Nicole Beurkens:

I love what you said about there being a difference between trying to change who a person is and making sure that they don’t suffer or suffer as much. And I think that’s such an interesting and important thing to hone in on, because the neurodiversity movement has really helped us understand this idea that all humans exist on a spectrum, in terms of all different characteristics and qualities and that different doesn’t equal bad. I think you said that earlier in the conversation. Different is different. Different doesn’t mean bad. And so this idea of neurodiversity within the population doesn’t just apply to people on the autism spectrum. It applies to a wide range of diagnoses and even people who don’t have a diagnosis or don’t care to associate with a label. So there sometimes though is confusion and I know a lot of parents in the therapy world who feel conflicted about that because there’s a message from some people within the neurodiversity movement that anything that you might do, treatment-wise or to support a child on the spectrum, a person with brain-based differences that that’s not okay. That’s changing them. And what you’re really talking about is this middle ground that I think is lovely and important and valuable around: No, we can support a person or we can address medical needs, we can address issues that are creating unnecessary struggle and suffering without fundamentally trying to change who they are and how their brain works. Am I articulating that position well?

Sarah Frisch:

Yeah. That’s about right. So the exact definition of what constitutes meddling with who a person is, I imagine probably varies, but things like improving a person’s diet or building more movement into our lives or things like that, things that make it so we suffer less, medically speaking, I feel are very — or things like ABA that typically focus on trying to train us to not be ourselves and fit us to some kind of standardized neurotypical mold are more harmful, I feel.

There’s a certain element of any group you can name: christianity or democrats or republicans or any group you can name that is going to be very loud and very obnoxious, and should not, generally speaking, be listened to. Neurodiversity has its own form of that with the “Just leave us alone to suffer by ourselves because this is the way we want to be”, and I can’t get behind that. If you’re miserable, you are yourself miserable and then you’re making everyone else around you miserable. And that does not help anyone. That’s a waste. If resources are there to help make you less miserable, you should be taking them. I can’t get behind any kind of mentality that says “No, my suffering is beautiful.” In one of C.S Lewis’s books, I can’t remember which one off hand, there was that the soul of a person in hell, that he sought redemption and there was this spiny snake or something coiled around him that was whispering lies and terrible things in his ear, and he had to be convinced to let go of it. Once he did, he became more himself, with this thing taken away. He became more himself, more able to be himself. A happier, healthier person who would then go on to heaven whatever it was, I stopped paying attention at that point. But he was less himself when he was suffering. 

And I guess I feel that’s accurate for my medical journey as well.

My journey into better health, because when I came to this clinic, I came fairly withdrawn and fairly depressed, I would say, and not really able to express parts of myself as a result. So it’s been a few years at this point and my nutrition has improved exponentially. It’s been a long journey, but suffice to say a lot of moving pieces and a lot of things had to get ironed out, but I can now smile for a camera, and that is not something I was ever able to do after probably age four, I want to say. I don’t like cameras, but you still need to smile. So now I can do that. I can engage in small talk in a way that’s more meaningful, and not stilted-sounding. I can make connections with people that I might have been completely unable to do before. And I’m able to experience more happiness and joy, which I couldn’t prior to getting help. The capacity was not there. It was really kind of a static system. It’s better now. 

Dr. Nicole Beurkens:

That’s so well-said. I think what you’re articulating there is a really appropriate, healthy and helpful middle ground that I think is really beneficial for parents, especially, to hear, who may feel conflicted around this issue of “I don’t want to fundamentally change who my child is, but I see them struggling. I see some things either medically or health-wise that are going on” or “I see the pain and suffering that’s coming from some of the isolation or being ostracized. So where is that line of how much to pursue therapeutically or in different realms?” And I think you really talked about that in a lovely and helpful way. And certainly, there is no one size fits all. That’s part of the thing of having a child who is neurodiverse. They are an N of 1, right? Label or no label or whatever, they are themselves. And it’s really getting in touch with who they are, what their needs are, and what’s important to them.

What actually is creating struggle or suffering for them, because when you were talking about the things that have improved for you or the progress you’ve made in certain areas. I think it’s important to point out, those were things that were important to you. You wanted to be able to experience more joy. You wanted to be able to smile for a camera or engage in small talk, not because somebody else told you that that was necessarily important, but because it was important to you at that point in your life. And I think that’s an important component, right? To identify what’s of value to the individual. 

Sarah Frisch:

Right, and it will vary on the person, like you said. 

Dr. Nicole Beurkens:

Absolutely. So we’ve talked a little bit about struggles that you’ve had and things that you, in hindsight, would have been nice to have been different for you, maybe brought less struggle or less suffering for you growing up. I’m curious, I’m going to put you on the spot a little bit and ask this question as we start to wrap up, but do you think there are one or two things that come to mind that you think fundamentally, we, collectively — parents, professionals, that we don’t do very well or understand very well when it comes to people on the autism spectrum, people within the neurodiversity community? Are there things that you think we just get wrong that would be really helpful for autistic people or anyone who considers themselves neurodiverse for us to do better with?

Sarah Frisch:

From personal experience, listening to your kid is really important. You get into this mentality where “I’m the parent, I know best”, and if you’re also autistic, maybe you do have a full understanding of that, but if you’re not, your kid knows what’s going on with them best. And maybe they don’t have all of the adult experience that you do, but you should still listen to them when they say “I’m miserable” or “I just want to be left alone”, or whatever they can tell you about their experience. In the neurodiversity movement, we call this presuming competence. Presuming that your kid knows what they’re talking about, even if they don’t necessarily have the 30+ years of experiencing living on the earth that you might.

Just because they’re inexperienced with the world doesn’t mean they’re inexperienced with themselves. So I tend to recommend strongly: Your kid knows what’s going on best. If you aren’t listening to them, you’re missing a very important flow of information that would let you make better decisions. And I guess the other thing that I tend to mention when asked is that parents should really make sure to make time for themselves too, because if my parents had been more healthy, I guess, they would have been able to listen to me better, and they would have been able to be of more help and perhaps I could have gotten my diagnosis at age 9 or 10 when my mother’s social worker friend was mentioning, “Hey, she’s kind of like my son, and my son as Asperger’s Syndrome”. Maybe your child is autistic? And my mom was just too buried in her own things to follow up on that. But it could have made a lot of difference. So getting help for yourself if you need it — therapy or 5 minutes with a cup of tea where someone else watches the kids. Just something for keeping yourself healthy as well as running this way and that trying to keep up with your kids’ services and advocating and fiddling with laws and figuring out healthcare: It never ends. It never ends for regular parents, it certainly never ends for parents of autistic people, but you need to make time for you too, because if you don’t, you suffer for it. When you suffer for it, everyone around you suffers for it, we suffer for it. It matters. I was pretty dense growing up, and I could still tell mom was not happy. And my dad was not happy. 

Dr. Nicole Beurkens:

So powerful for parents to hear that coming from an autistic adult, saying “Look, let me tell you how important it is for you as parents to take care of yourselves.” That’s really powerful. And I want to touch on what you said before about listening to kids, lest anyone think that that just applies to kids who are actively verbally clearly communicating, you’re talking about listening in the broad sense of listening. You’re talking about listening as in our power of observation. A child doesn’t need to verbally tell us “Hey, I’m feeling really miserable” or “This isn’t working for me” or “I’m really stressed out” for us to be able to observe what’s going on with them. And that’s a form of active listening, too, right?

Sarah Frisch:

Right. So all behavior is communication. That’s true of whether there are words with it or not. If your kid is throwing things, they’re probably upset and you want to find out why. If a kid is refusing to go do something that they would normally like, there is probably a reason, and you should probably try to find out why. It isn’t limited to words. The words are just the easiest thing that we have available, and they’re not all that accurate sometimes. I spent a lot of my childhood finding that out. People will say one thing and mean something else entirely, and I was fluent in sarcasm, so that wasn’t the problem. It was a different mode of communication entirely that was the problem. So yeah, it’s not just listening to what they have to say. I guess sometimes it’s listening to how they say it or how they act, and becoming curious about why that is, because it’s not necessarily as simple as “Well, they’re just going out of their way to make my life miserable.” I don’t think I’ve ever met a kid that does that for just that reason. If you’re throwing things, it’s not because of you. It’s because something in their life is not good. 

Dr. Nicole Beurkens:

And we need to figure that out, and that’s the thing. So the behavior is communication, then it’s on us to investigate that and to figure out what needs to be done to meet the need here. So I appreciate you touching on that. You’re going to talk in just a minute, I mean we’ll talk about the resources that you have available, but I do want to touch on for those of you listening who maybe have an older child or maybe a child now who is either in that transition period away from school, formal K-12 schooling or college into life. Would you just touch on what that has been like for you? Because certainly these things don’t just go away once graduation happens. We spent a lot of time talking about your younger years and up until diagnosis, but certainly adulthood, even for someone like you who has put in so much effort to sort of figure out how the world works and where you fit, and how to be what other people want you to be — there are still a lot of challenges that being autistic brings into life as an adult. So I’d love for you to touch on that and then we’ll connect that to the blogging that you do and sort of the advocacy that you do.

Sarah Frisch:

Yeah. In some ways, my childhood was the easy part, and getting into adulthood — there’s so much that they don’t teach you in school, that no one teaches you who — at least in my school, the nicer ones, how to file taxes, repair your car, how to find a car repair person that won’t rip you off. Still working on that one. How to find friends when you don’t have all of that socialization from school. It’s a mess. When the school supports cut out, there is often not anything to fall back on for a lot of people. So we’re pretty much just left to mostly sink but try to swim on our own. In some cases, we’re forced into poverty to qualify for Medicare so we can have the support services that we need or try our best with entry level jobs to pay for our own, and it doesn’t usually go well. So no, transition is very, very difficult. I was fortunate enough because of the whole academics thing, I was able to go to college, and they did sort of this start out in the dorm room and go to the buffet for every meal of the day, to living in an apartment where you’re sort of responsible for some of your own meals unless you want to make your own. So I’ve learned to cook a little bit and to deal with more people at once, and then eventually you move out into hopefully an apartment of your own. But I had kind of a tiered sort of transition in that way, but there was a lot to learn that wasn’t covered, that my parents didn’t teach me, that wasn’t covered in school anywhere, and that was for someone just trying to do the whole normal person “Go from college to job to marriage” or whatever. There are a lot of different paths in life and they don’t have to look like that. You don’t have to try to do the neurotypical dream life of going to school, going to college, getting married, having some kind of job that pays well enough for you to have a house. There are a lot of ways to live that are healthy and happy that don’t look like that, especially for those of us that don’t necessarily speak or don’t speak clearly or quickly enough to hold regular conversations, you’ve got to start looking for stuff like that. Presuming competence, trying to let us have as much control as possible in our lives, but also be open to life just not looking like the idealized neurotypical life. And it can still be healthy and happy and joyful, even. 

Dr. Nicole Beurkens:

It goes back to that different isn’t bad. Different is just different and there’s a ton of different ways that adulthood and life beyond school and all of that can look if we’re open to exploring options and to really designing it around what’s going to be best for each individual and letting go of this idea that this prescribed path is the only good or right way to do that.

Sarah Frisch:

I think that’s becoming easier to do with the unusual circumstances we all find ourselves in. It’s not really feasible for a lot of people from millennials and Gen Z to get a house, for example, unless they all bundle in like 8 people in a house. I’ve seen a few of those, they’re very successful, it’s very cool. But it’s just not feasible for most part for a millennial or a gen x family to be like “Alright, we’re going to buy a house.” We just don’t have the money. So it’s becoming more reasonable for doing these big household type things or for kids to live with their parents for longer while they save up, or any number of less traditional sorts of lifestyles. 

Dr. Nicole Beurkens:

Yeah. I think that that’s great. And you have, really, one of the things that you’ve explored in recent years as you sort of navigated the world of traditional work and were like “Yeah, not so sure that that’s a great fit for me”, but you’ve explored some out of the box ways to use your knowledge, your gifts, your abilities, your connections to really be able to contribute to the world in some positive ways, so I’d love for you to talk about your blog and some of the advocacy work that you do. 

Sarah Frisch:

Right, so I have a two day a week blog. On Mondays, I look into — there’s a stream of research that universities and such are constantly publishing, so their work goes out. It’s kind of hard to find it all, but there are a few websites that sort of channel all of it into RSS feeds, so I look through those and try to find ones that are relevant either to mental illness, or to autism, or to any number of things that go wrong with autism like digestive issues. So I look at one in particular every Monday and sort of discuss it and try to show why this is going to be helpful in the future, and then on Fridays, I look for interesting articles around the internet. I review books. There are thousands of books about autism at this point, and I’m starting to put category systems on them, even, but I’ve read at least a hundred at this point, and there are reviews for those. Some of them are better than others, but I don’t review them if they have nothing useful to offer. So there’s a catalogue of those. Sometimes on Fridays, I will also do sort of a series of educational type things.

When my spouse and I were house hunting, we put together a spreadsheet that had all of the things we were looking for just very clearly laid out. So I discussed a couple of things that we were looking for, and I included the sheet. I also went through the local grocery store and looked for all the things that a sensory aware person might pick up on. There was a freezer that was malfunctioning and making this horrible screeching sound, for example. They have all these flashy lights and little TV screens. It was an interesting trip. It’s a very long series in that case, but there are all sorts of things that you wouldn’t expect to see and you would generally just walk right by. So I point those out. I did a series on the various types of stigma around mental illness. There’s like 8 of them. It was a lot more than I expected. 

Dr. Nicole Beurkens:

I think you really cover such a wide range of issues, and what I think is great is you don’t claim to be speaking for every autistic or neurodiverse person. You’re saying “This is from my perspective”, but I think that can be so helpful. When you told me you were doing the grocery store series, I was like that’s great! Because so many parents wonder why their kids struggle so much in the grocery store, and it’s because they’re looking at it through their own sensory lens and their own perspective and not realizing all of the things that are very real in that environment that are creating challenges for their child. So I love that your writings, and the things that you talk about on your blog really give people some important windows of insight into taking a different perspective or understanding what might be going on for another person, and I think that’s so valuable. So let’s make sure to share where people can find your blog. 

Sarah Frisch:

So I’ve got a blog on WordPress. The Realistic Autistic. It should just be www.realisticautistic.com. Then I have a twitter as well because Twitter has character limits, it’s @realautistic. That gets a lot of the research that I don’t necessarily make a whole post about from the Mondays. The research reviews. There’s a lot of them that I go through that I just can’t get 5 or 6 paragraphs out of them. They’re interesting, they’re useful, they’re good to know about, but they’re just not blog material. So they go there along with a brief comment.

Dr. Nicole Beurkens:

Great. So @realautistic on Twitter, and then the website is realisticautistic.com, and we will of course have those in the show notes as well. I just really encourage everybody listening to go and check out the blog. It’s updated as Sarah said, a couple of times a week, and just has a vast amount of really helpful insights and commentary at this point, so I think it’s great and a very valuable resource. Sarah, I really want to thank you for spending the time with us today. I was really honored when you agreed to my request to have this conversation publicly like this and record it, and I just think that your experiences, your insights are so valuable to people. So thank you for being willing to come on and share them. 

Sarah Frisch:

Yeah, thanks for having me, I really appreciate the invitation. 

Dr. Nicole Beurkens:

And thank you, as always,  to all of you for being here and listening. We will catch you back here next week for our next episode of The Better Behavior show.