Autism Goes To College
Autism Goes To College
EPISODE 40: What happens after high school? Start that conversation early - documentation, campus contacts, and simple routines to practice now
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Expectations may vary. Some students on the spectrum find that community college is a good next step. Many want to take a gap year, get some work experience or travel. Others are eager to head off to a four year college. Neurodivergent neurodiversity education advocate Amanda Morin says the time to start talking about post- high school transition planning is early. Because what a student wants and expects to do after high school may not be aligned with parents' expectations, and that means talking it through. Morin also says it's important to remember there are no IEPs in college, and after turning 18, the student legally becomes their own advocate. Insights and strategies for setting off on the road ahead.
Now that I'm genuinely enjoying my social life at Hamilton, I'm more incentivized to actually be social.
SPEAKER_07Having autism isn't something that should prevent people from having a successful college experience. It takes work.
SPEAKER_01Join clubs, find groups, find your people, find ways to fit in, see a peer mentor, see somebody who can help you get involved on campus.
SPEAKER_04There were a lot of black children on the spectrum who were also deaf. She's not the first one.
SPEAKER_03I researched all of the majors and then eliminated the ones that sounded not interesting to me. So then I changed it to chemical engineering, to work with chemistry. Then I took an environmental science class and I'm like, I think environmental issues are really important, and I'm really passionate about state sustainability and stuff. So then I changed it to finally environmental engineering.
SPEAKER_02Especially in a college town like Outdoor Dash. Like, just go out and get the food. That's good exercise.
SPEAKER_08Hey everyone! Thanks for joining us on this episode of Autism Goes to College, the podcast for students on the spectrum and for everyone who supports us. Navigating college is always a challenge, so here are the hacks, insights, and great ideas you've been looking for to make college work for you. We're a small group of self-advocates. We're all in college or recently graduated, and you can do this too.
SPEAKER_06At the end of this episode, I'll give you some details about where you can see the film today. And it's all at our website, autismgoes to college.org. Every month we drop a new episode. Here's what's also new: there's a resource center on our website with dozens of outtakes of important stuff that didn't quite make it into the film, all of the podcast episodes, and blogs from experts and from student advisors from the film. Thanks for listening. We do hope to hear from you. This is the 40th episode of our podcasts. And also, I've been hosting these conversations for two whole years now. This podcast grew out of the documentary film, which is streaming, and we'll have more details about that at the end of the show. It feels like this episode is a perfect way to wrap up this year. There's a brand new report out right now called The Neurodiverse Campus, which love the title, great start. But curiously, it is all of 42 pages long, short, and it makes it clear why podcasts like this are here for you to fill in those gaps. My guest on this episode is Amanda Morin, a neurodivergent neurodiversity consultant, author, and educator with a practice devoted to building accessible, empathetic learning spaces, and someone who was consulted in the creation of the report, The Neurodiverse Campus. Thanks so much for joining me, Amanda.
SPEAKER_05Thanks so much for inviting me. Yeah.
SPEAKER_06So first I want to talk a little bit more about the report and about your contributions. And then we have so many more questions as well. So this new report, The Neurodiverse Campus, is published by the Chronicle of Higher Ed. Do you know how they decided to take on that issue or why they took it on right now?
SPEAKER_05Sure. You know, Kelly Field, who is the reporter, she does a lot of work for the Chronicle of Higher Education around disability and disability issues and took a specific interest in neurodiversity and neurodivergence. And I actually use the terms differently. So I'm I'm doing that very specifically. And I think it's an evolution of language, right? I think we're all we're all kind of getting there. And so Kelly reached out to me because I had been a source for a number of different sort of either on background or talking to reporters before, knowing that I myself am neurodivergent. I self-ID as autistic, and I have neurodivergent children, some of whom have gone to college already, and also work with K through 12 students as well as their parents. And so thought I might have a really interesting lens on what it should look like to have a campus that is neurodiversity affirming, right? That includes all kinds of minds in the way that they look at students. And um, and when we first started speaking, I think that she was looking at what does it mean for professors, right? What does it mean for schools to really start thinking about what it is to include the entire population? And what my contribution ended up being was a really frank discussion about the importance of really making sure that all staff and specifically professors and adjunct professors and teaching assistants had the knowledge and have, right? Because we're getting there, have the knowledge they need in order to support neurodivergent students in their in their in their classes and in their college experience. And I think the the report just evolved from there.
SPEAKER_06You know, it's interesting when you said professors and like pushing past that, I envisioned like getting into something that a lot of the research reports, which is residential life and uh social and dining, the aspects of campus that are really integral to the college experience, but often completely not talked about in accommodations. Did that end up being a piece of the report?
SPEAKER_05It is. I mean, it's part of the conversation that that I had, it's part of the conversation some of the other people who she spoke with had as well. It was something that I was really passionate about saying it's not just professors, it's all staff, it's all faculty.
SPEAKER_06Absolutely. And I think that working towards a place where that knowledge is provided and seen as mandatory uh is is a really good step. But it will probably take time because I've certainly seen pushback on that in my own work.
SPEAKER_05Absolutely. I mean, education moves sort of glacially in and change comes with difficulty. And I think that it's a novelty at the moment to start talking about neurodiversity and neurodivergence on campuses. But I do think my utopian world with included space, where all staff, all faculty actually just had a baseline understanding, not even about like how to accommodate specific students, but a baseline understanding of what it means to have different kinds of minds represented in a classroom and what what you can do in a classroom, what you can do in a syllabus, what you can do in a program to really not retrofit, right? But proactively support all the students in your classroom without them having to come in and actually specifically say to you, this is the accommodation I need, but to be able to provide options. And, you know, I would love to say that we're there, but we're not there yet.
SPEAKER_06Yeah, we're absolutely not there, unfortunately. Um, universal design for learning is is better integrated in K-12 than it is in the university space. Um, I have colleagues that are working uh on pushing out uh universal design style approaches to instruction. Universal design is just the idea of preparing in advance the way you teach to suit learners with a wide variety of brains, bodies, and life experiences.
SPEAKER_05You know, and I think the universal design approach works really well in K through 12. I think it could it could work extraordinarily well on campuses, university colleges, community colleges, any of those kinds of programs, because it's just it's looking at how do you engage and motivate students based on what met what like works for them? How do you ask them to show what they know in ways that are appropriate? And and I just think like when we're thinking about preparing people for what comes next in their lives, that's the perfect time to say, and how does this work for you? And how can you show us what you know? And how can we support you in being your most productive self?
SPEAKER_06Yeah, absolutely. And you mentioned that ideally the burden of asking for help and disclosing needs isn't on the individual. But at the same time, we're in a state currently where the question of disclosure is often kind of the crux of entering a new environment. So as an individual who's counseled a lot of neurodivergent kids and families and who has gone through this maybe with your own children, what are your thoughts about getting and sharing and disclosing a formal diagnosis?
SPEAKER_05Um Yeah, and I think those are like very, I would break them down, right? So the getting of the diagnosis is the first part. And I think there are a lot of people, you know, fear plays a lot into all of this, right? And I think there are a lot of people who, whether it's parents or students themselves, who are afraid to pursue that diagnosis because we think of diagnosis as label, which is not the same thing, right? A diagnosis is a way of providing more information about yourself, right? Learning more about how your brain works, learning more about who you are and what your needs are. I actually think diagnosis is a really important piece of this journey. And not because I think everybody should have a label, but because I think everybody should always learn how their brain works so that they're not working against it, they're working with it. And so that they feel like, aha, I get who I am, right? And that diagnosis, I mean, from a really practical standpoint, the diagnosis is part of how you access those services. And I think that's important to know as well, right? Because you can go and disclose this is what I know about myself, but unfortunately, the system that we work in, you need to have that documentation to request the accommodation. So I think the diagnosis is an important piece. I think how you deal with that diagnosis and how you talk about it is a very personal kind of thing. I know a lot of students who are like, I want to go into college fresh and I don't want to talk about this and I don't want anybody to know. And those are the students who I think have a really much more difficult time getting into things because after the fact, once they have a hard time, it's like they have to sort of backtrack and say, actually, here's something you need to know about me, right?
SPEAKER_06Yeah. We've had guests on the podcast who spoke of that experience. So uh if you're curious to hear how that's worked out for some other students, I recommend going back and listening maybe to last year's episode with a UCLA student who tried to go in with without disclosing and had some hiccups. It's an understandable impulse though. And I I'm not gonna say that it's never worked for anybody.
SPEAKER_05Oh no, and it does. It works for some people, right? I think that's a really good point. I'm glad you said that. Like it does work for some people, and I think um, I think that there's a push-pull sometimes with parents and and children. And you know, I say children, but they're actually young adults, but there's sort of a push-pull because parents, some parents don't want students to disclose because they're worried about how it might affect their their future. And some parents really want students to disclose because they're worried about how their future will go if they don't have the supports they need. So I've heard the conversations on the podcast, and I think that there are pros and cons in all of those directions. My own 22-year-old, who is now out of college, chose to disclose in his college essay. And and I mean, he's just very loudly and proudly autistic, which is fantastic. I'm very happy for him. He chose to disclose in his college essay, and I wasn't sure what to think about that. I wasn't sure whether it was, you know, but it was his choice, and and he he made that choice. So I think that disclosing is something that you can do as you feel comfortable. And I think the thing that's really important to know is you don't have to disclose to everybody. And that's that's the thing that I think we kind of miss sometimes is you can start rolling out disclosure one person at a time, right? You can start having those conversations with people who you trust and feel comfortable with, or who all of a sudden, you know, like that moment where you where you sort of like recognize alike, and you're like, oh, this is somebody who I think will come up completely understand this because they're a lot like me. And I think that disclosure over time helps. One of the things I think is really important is for parents to have conversations early with students about how do you have those conversations? How do you talk about who you are? How do you disclose? What does it mean to disclose? Does it mean you tell somebody everything about yourself, or does it mean you explain sort of this is what I need? What does that look like for each individual? What is disclosure is an important conversation to have.
SPEAKER_06And speaking of parents and the really important role that they have in guiding young adults, what should parents know about the supports that are available? Like what should they expect as they're coaching their young adult to, or maybe a younger child even to just to disclose and to ask like from school or from regional center, even.
SPEAKER_05Sure. And I mean, I think the first thing is that question of like how young do you start having those conversations? I would advocate you have start having them in middle school, if not younger. I really do. I think the more we prepare our children. Right. Right. The more we prepare our children to understand who they are, the more we can help them let go of the other labels that they're holding on to themselves, right? Like we don't want kids to think I'm lazy, I'm unmotivated, I'm not trying hard enough. We want them to think like, oh, here's what's going to work for me. This is my brain, takes in information in a different way. You know, I need the lights down or I need some quiet space or whatever it is that they need to be comfortable, right? So I think starting to have those conversations young is important. I think setting students up to start having those conversations on their own, whether that means coaching on the sidelines and having like scripts that you practice at home that you can then try at school. I would say if you're doing it with a younger child, it's really important to also have the conversation with the teachers so that they know how to receive that advocacy. It's we don't want to set kids up to fail, right?
SPEAKER_06Yeah. And we we do have research from autistic people on self-advocacy that says the barrier isn't that we don't know how to self-advocate, it's that people don't know how to receive our needs and do not honor the things we advocate for. Um, so parents really should be aware that teaching your child to advocate is also teaching the world how to listen to your child.
SPEAKER_05Absolutely. And and I think one of the important pieces that I've learned over time coaching both parents and students is to be able to have them learn how to say, in some way or another, you know, you don't have to understand this, but you have to believe me. Right. And I think that's so important because I think understanding lags behind, but the belief in somebody's in somebody's needs is really important. And I think to some degree, uh it's okay to say you don't have to understand what you have to believe, because this is hard for me. I'm it's hard for me to have this conversation. I wouldn't do it if I didn't need to. But as students get to high school, they're required not only to, by federal law, to to be invited to their IEP meetings by the time they're in some states it's 14 and in some states it's 15. Um, but there's also like a transition component. There's a transition planning thing. So this that support is something that parents should expect to see at 16. At 16 is transition planning. And I think it's super important for parents to know if that transition planning is not part of your child's education or IEP by 16. You need to speak up and you ask that question.
SPEAKER_06Yes. And I want to be very clear as a special educator that every child who is on an IEP has a right to that under IDEA. So parents and students be very aware that centering the young adult and having transition planning is essential.
SPEAKER_05Absolutely. And we're on the same page there, you know, as as a for as a former special educator myself, I and a special education advocate. That is like a hundred percent. I absolutely agree. And I think it's important for the young adult to have a say in that transition process. I firmly believe we should not be talking about students, we should be talking with students, right? They have they should have a say in what that transition planning looks like, they should have a say in what their future looks like. And sometimes it's not going to be the same as what their parents expect it to be. And those are tough conversations, but the support is still important, right? It's important to know it's there. It's also important to know that there are various names for support systems in colleges and on community colleges and in apprenticeships, right? Sometimes it's disability services, sometimes it's access services, sometimes it's student support. So knowing the different names, so you can ask about that as you start thinking about what's next in your future. You know, is it a job coach that you're looking for? Is it a student support system that you're looking for? But also to know there are no IEPs in college. And that's important to know too, right? The accommodations and supports that come in colleges are very different and than that they are in high school. So being prepared for the fact that it's not going to be the same kind of services and support, and that there's going to need to be documentation. So, you know, this is very nitty-gritty, but I think it's important too, is that in an IEP process, every, you know, there's a triennial component of things, which means every three years, there's an opportunity for a student to be re-evaluated. The IEP team can decide not to do that if they think there's enough information. If your student is in high school and their triennial comes up, do not waive that right because they will need that evaluation information when they go to college and bring it to the disability services.
SPEAKER_06And particularly if there are assessment results and um concrete data points that the disability services office can use, that's very helpful because they're looking for clear documentation. And while the IEP process looks at educational eligibility and not a medical diagnosis, a lot of those psychological measurement tools are still really helpful.
SPEAKER_05Yeah. So I so I'm always encouraging people to say, you know, I know that people, parents and students alike, worry that it means that they may not be eligible for services anymore, um, which to some degree could be a celebration, right? You know, right? But also I think it's important to know that like you don't want your child on top of going to college to have to pursue testing to prove that they need support if they have the opportunity to do it before they they're there. The other thing is to know that when your child's 18, they have to do this on their own. And I think I think every I think this is a common knowledge piece that I just want to reiterate, right? So preparing for the fact that you may have to start, you know, scaffolding to back away a little bit as a parent is really important to know too, because it's hard. And I speak as a parent when I say that. It is hard to let go for some parents. It's hard to let go because you've spent your entire you may have spent, you may have spent your entire student's lifetime of K through 12 being the person who really advocates for them, but you have to pass the torch at some point. Um, and and it's okay. It's okay to do that.
SPEAKER_06Yeah, and it it it is emotionally fraught. Um, I think preparing yourself and your child for the fact that there will be times when you make a mistake navigating the system, and there will be times when you do every single thing right, and the system will not have a good response, regardless. Like those things are challenging. So, what do you advise uh parents and students to do to prepare for those lumps and bumps?
SPEAKER_05Oh my goodness, that's that's a tough question, right? Because there are always gonna be lumps and bumps, right? I live in Maine, I call them the potholes. We bump into them and we come back. So, you know, your journey is always gonna have potholes. Um, we really hope systems will support students, but systems are systems, right? They're not built specifically to look at individual students, they're built to look at the success of the system as a whole, right? So that's one thing I advise both parents and and young adults is to recognize that the system is set up in a specific kind of way. Let's talk about how that system is set up and let's talk about where you might get stuck. And so, what's the workaround for that, right? Is it okay, I have to figure out what it is that I say to make sure that my needs are heard. And if they're not heard, what's my next step kind of thing? Or is it maybe this isn't the right system for me to be entering into? And I think that's an important conversation to have as well, right? Because maybe a four year college isn't the right system at this time. Maybe it's a community college, maybe it's not even college, maybe. It's you know an apprenticeship. Maybe it's so looking at the different systems and saying, like, which is the system that I feel like I can be most successful in is a really important piece of that as well. And sometimes it's a matter of having really tough conversations where you say, You're gonna try and you're gonna try, and you're gonna try, and you might fall down. And as a parent, my job is to make sure I'm here if you fall down to help you bounce back as much as I can, right?
SPEAKER_06Absolutely. And I also think that imagining how success could feel is really powerful in terms of overcoming some performance anxiety that at least at least for me, um, giving myself permission to imagine that I could do well is very important. Um Yeah.
SPEAKER_05And I think I think our young adults surprise us because I think as parents, we don't always imagine their a future the same way our students do. And so when they tell us what success looks like, we're like, I never even thought of that. That's amazing. Or we're like, oh, I never even thought of that. I'm not sure what I think of that, right? So those those conversations are important too.
SPEAKER_06Yeah. I mean, most of the time when I come up with something I've when I'm confronted with something I've never thought about before, my reaction is like silent terror. Um, so just like letting the first reaction marinate a little bit. So speaking of those varied pathways and the like guidance and discernment of figuring out what is gonna work for you, are there strategies that you've seen work for kids and families or things that have kind of backfired and not work so well?
SPEAKER_05Um, yes, and to both, I think is the the answer to that. The first strategy that I think works really well is like motivational interviewing, right? Which is the the process of sitting down with a with a young adult and just talking to them about what are their interests, what do they like, what do they do well, what would they like to try, you know, those kinds of things. When I work with parents and and kids, I often will do it separate, I do it separately, right? So I have, you know, I work with kids and I'm really um invested in letting them know that I'm there for them. I'm their advocate, I'm there to have conversations with them, that it's not always going to get like dictated back to their parents. So it's a safer space. I want to make sure that they understand that like I'm there to work out things with them. When I have conversations with parents, I'm there to work out things with them too, right? To talk through. And so like motivational interviewing is something you can do with both parents and students, like, but the conversation with parents is different. It's kind of like, what do you envision for your child? What do you envision for them? What are your expectations? And then I will have often have a time where I'll bring them together into the room together and say, okay, this is what I've heard from you, and this is what I've heard from you, and try and like facilitate a conversation about where there are similarities and where there are differences. And sometimes it's tougher, right? Sometimes it's tougher because the expectations completely don't align. And sometimes that's about a parent's expectations are very different than a student's, either because they're lower or they're higher. And I think that's important to note, right? What they're what they expect of or think that their student is going to be able to do may be very different than what the the child is or young adult thinks that they're going to be able to do. And those can be really fraught, those can be really difficult conversations. Uh, but the one thing that I think is really really poignant in those kinds of situations is to be able to say, look at how amazing it is that your child has an idea of who they want to be. And sometimes that's the thing that that the parents have to marinate in is this like, they're a fully fledged person on their own. I've done my job well in helping them become a fully fledged person with their own ideas, right? And sometimes it's not that easy. Sometimes it becomes really tricky. And I think that's that's the place where where people get caught is the letting go of what they expect and being able to accept that it's not going to go down a path that they thought it was, and letting their child try different things. So, you know, I think the first thing that has worked well is to be able to have those conversations separately and then together. The second thing that has worked works well is to be able to celebrate the child that you have cre, you know, like helped create this personality and that they have taken it and become their own person. And I one thing that has been most extraordinary, and for me too, and I actually talk about this when I talked with the person who wrote the report, I talked about the ability to sort of let go of my need to sort of navigate all of the systems for my own child, right? And I have three children, 28, 22, and 14. So I've navigated the systems in various ways. They're all neurodivergent, right? And to be able to let go and pass some of that on has allowed me to step back and just be a parent who develops a relationship with my child based on our shared interests, our mutual dislikes, our mutual ability to make puns, whatever it is, right? This experience is no longer based around their disability. It's based around who we are as people. And when I see that happen, it's really such a mutual relief. It's such a mutual relief to be able to say, like, we are forming a relationship based on who we are as humans instead of based on what we're fighting against as people. And that's just so rewarding to see and so hard to do at the same time.
SPEAKER_06Yeah. Um, and parenting is often very isolating. You know, we parents don't get a ton of systemic support here these days. So, you know, parents, if this is, if if you're listening to this and being like, oh my God, I don't have the bandwidth to be that good all the time. Felt, yes. Um, so speaking of that, like what kinds of support are most helpful for the young adult looking past high school?
SPEAKER_05I think the first thing I would say is the first support is um, you know, I think in schools right now, like K through 12 schools, public schools in particular, finding somebody who can be a support in terms of mentoring you in thinking through what your future looks like, whether it's a teacher or whether it's a career counselor or whether it's a guidance counselor, I think that support's really important. I think having peer-to-peer mentors is also important. So, like somebody who's a little bit older than you, who may be further along on the journey, whether it's a sibling or whether it's somebody you, you know, when you were a freshman in high school, they were a senior in high school and they're that much further along, is really important too. Um, you know, I like to say a peer group, but there's not always a peer group. And that's really like that's tough.
SPEAKER_06Yeah. You know, some schools have a a team or a hobby that clusters a lot of like minded neurodivergent kids, whether it might be, you know, the fencing team or debate or model UN or theater. But some students don't find that comfortable peer group home in high school, unfortunately.
SPEAKER_05Yeah. And and I think so, so I think like identifying what you like to do and what you're comfortable with is important for students, right? Because I don't think we should push students to be people who they aren't, right? And you know, that's like authenticity is so, so, so important to let them be who they are. So finding that space isn't a matter of saying, like, you have to try a sport, you have to try an art, you have to try a it's it's a matter of like letting them sort of figure that out on their own. But I also think like it it's hard because thinking through what those supports could be are so individualized for each person. You know, I have this wonderful young adult that I work with right now, and we've had such great conversations about the difference between being alone and being lonely. And that's a conversation that we've had both together and with parents because a lot of parents see students spending time by themselves and they think they're lonely.
SPEAKER_06No, people project loneliness onto autistics who are in fact experiencing the greatest contentment they've had all week.
SPEAKER_05Yeah, and you know what, and that's like I like being alone. I actually am, you know, I'm very good at being social, and then I have no social battery left.
SPEAKER_06Yeah. There's a real distinction between empowering somebody to know what the neuronormative social expectation is and forcing conformity to that expectation. Letting somebody to choose choose whether to camouflage in certain situations could potentially even empower them.
SPEAKER_05Absolutely. And I think that goes back to the idea of disclosure, right? And I think that's that's probably I'm I'm glad that you said that because it goes back to the idea of disclosure, is camouflaging and masking when they are necessary, can be very overwhelming. But you can choose, and that choice is it's like that autonomy is just such an important piece of really helping young adults figure out who they want to be in their next iteration of life.
SPEAKER_06So when should parents like start working on those conversations and that stepping back and kind of letting the young person lead? What is the age at which you want to start dial, like letting them take the reins? Or is it really variable?
SPEAKER_05I think it's really variable, right? You have to look at the developmental appropriacy of that and and remember that your autistic child is going to have varying skills in varying ways, right? So they might be ready to do all of their laundry and all of that kind of stuff, but not ready to take on social situations without your support, or vice versa, right? They may not be ready to do some of those functional skills, but they might be ready to do some of the social situations. I do think the younger the better, to be really honest about it. I think, and it doesn't have to be everything all at once. You know, I'm I'm a big proponent of the what I, you know, what's known as the the I do, we do, you do, right? Gradual release of control. Exactly exactly. It's exactly. And and it can be like, I show you how to do this for a month and a half, or I show you how to do this for a year. It doesn't have to be the same timetable. And then it's like as long as it takes us to do it together is fine. And then you try it. And if it doesn't work, we step back and we try a different way. But I do think the earlier the better, because then you're introducing sort of those skills and not uh not all of a sudden saying we have one year, we have one year to get all of this done, because that's so overwhelming for everybody, right? That's and it's not practical. Um, you know, I wrote a book called Adulting Made Easy. And I didn't realize how much adulting was not easy for me until I started writing this book and and was, you know, telling stories of like what I was like in my 20s because I didn't actually know how to do it well, and realized like there are things that we don't even think about that we need to teach our kids. Like, what do you need in a first aid kit? Right.
SPEAKER_06What is in your vehicle emergency kit? Like, okay, one driving and driving from state to state and jurisdiction to jurisdiction is a huge issue.
SPEAKER_05Right, right. And so if you start like those little things early, right? And I, you know, and I and I think a lot of us as parents, sometimes we do it because it's easier to do it, right? So, like those kinds of things are important to start teaching, like really practical skills. Like I remember when my my oldest started thinking about college, she didn't realize that you needed to bring your own linens and towels and things like that. And I realized, oops, I probably should have mentioned that to her. So I mean, I think as soon as you can start having those conversations and do them in little doses. Like that's that's the piece that I think is important. Like you don't want to overwhelm your child with doing it all at once, right? Like that's an info dump. That's an info dump of like, here's all the things that I know you need to do by the time you turn 18. Um, that's a sure way to have somebody say, I don't want to turn 18. I'm not, you know, and take your cues from the the person you're talking to, your young adult. Car conversations are great. I don't, I don't, you know, if you have the opportunity to have a car conversation when you're not looking at each other and you're just talking, those five-minute conversations are fantastic. They can, you know, and leaving it open to say, like, come back and let me know if you have questions. This this conversation can keep going. That's totally fine. And also, I think the last thing I would say is is being comfortable with having to let go is the hardest thing. That's so hard, is is to know at some point you have to take a deep breath and say, I've done the things that I know I need to do to help prepare my child, and I need to trust that they're going to try it, they're going to do as well as they can, and they know they can come back to me if they have questions.
SPEAKER_06Yeah. And I mean, in terms of like letting your child try it, how do you how how do you coach parents around accepting when the thing the child tries isn't what the parent expects? You know, the child tries community college and lives at home, and the parent always expected that their young adult would go to a four-year residential school.
SPEAKER_05Yeah, I think I think that's that's that's a tough thing, right? What I do coach parents around is is trying to let go of their being atypical or a normal, right? And I think that that's that's particularly hard. But that's the point that I really try to have a conversation around is like, this isn't about the expectations of society. This isn't about what your niece or nephew is doing. This isn't about what your neighbor's child is doing. This is about what your child needs and what your child is going to do. And the fact that it may take a different timeline or a different look doesn't mean they're not going to have a successful life, right? And to remind parents, and it's not necessarily reminding them as much as having conversations about like what's your end, what's your end goal? What is your end goal for your child? And most parents will say, I want them to be happy and I want them to have a productive life, right? And you know, oftentimes what I will say is define happy, right? Because happy doesn't mean cheerful, right? So what I want them to be able to say is like, what is happy look like for my child? Um, and what is productive look like, right? And so we have those kinds of conversations about what is happy and productive look like, and can it look different from what you expect it to? And is that okay? Right. And the is that okay is where we keep coming back to. And I drill deep and say, you know, why is why is that not okay? Or can you explain to me what you're feeling? Because a lot of times that's the feeling behind it is the part is like, is it disappointment? Is it sadness? Is it fear? Is it what is it, right? Like, what is it that's driving this need for it to be something different? And a lot of times it's comparison. And I and I'm not surprised by that, but I think it's important to say it out loud. A lot of times it's because parents feel the need to show other people that their child is going to be okay, also. But what they need to know is okay doesn't have to look the same as the other kids around them.
SPEAKER_06Yeah. And and we do live in a society that feels comfortable judging parents, particularly moms, by what their child does. And so parents feeling guilt or shame about perceived judgments from other people is grounded in a certain amount of real stigma. And so I think it's, you know, I just have so much compassion for parents who are on the receiving end of ableist judgments from busybodies because that's happening and it's just the bits.
SPEAKER_05Oh, absolutely, absolutely. And I am always just like cheering on the inside when I hear a parent say, I'm glad your kid's on the honor roll. My child made it to school every day this year, right? And like those are the parents I'm like, you did it, you did it. You said the hard part out loud, and I'm so proud of you for it. And there's absolutely nothing but sincerity behind that for me, because I'm proud of them for saying success might look different.
SPEAKER_06Or like my child survived a health crisis. They, their academics were not the focus for our family this year, and we're just all so glad we're still here, you know. And I think that there is a lack of a brave supportive space for some of those more complicated, nuanced narratives.
SPEAKER_05Yeah. And that's the space I try to be, right? Is I I want, and one of the things is I do it by example, you know, my own children. My my my daughter would say she's my first pancake, to be honest, right?
SPEAKER_03It's always a little lonky.
SPEAKER_05She's she's the first pancake, right? Yeah, they got better over time. So, and and I, you know, I appreciate that and I I love the way she puts that. And, you know, now I have a 14-year-old who's a freshman in high school, and we had some really big conversations about it's okay if you don't take the same classes as your as your peers. You do what makes you feel most comfortable and happy, and know that I believe in you and I trust you to make the decisions that feel most comfortable for you. He's saying to me, I'm exhausted. There's so many people, it's too much noise, it's too much. And I'm just like, so that's your focus. Your focus is on making sure that you are uh psychologically okay, right? We're not going to worry about whether you're in the highest level classes or getting the highest grades. We're going to worry about whether you come home and you're okay. And okay is an amazing goal for so many of our autistic students because okay is hard. It's hard for anyone. But you add all of the extra like masking and social pressures and sensory input and and all of those things, and it's an exhausting life to live sometimes. And we want, and I just want parents to know okay is an exceptional goal.
SPEAKER_06Yeah. Um, I mean, if I could be okay enough that I stayed regulated and had no more meltdowns, I think that like, wow, what a life I would be living.
SPEAKER_05You and me both. You and me both, and I I mean that sincerely. Like I am, and I don't, I don't, I'm 50 years old, and I still have that. I still have meltdowns, I still have shutdowns, I still have moments, and okay is sometimes my goal too.
SPEAKER_06Yeah. Um, I mean, it is between the last recording of this podcast and this current recording, like I have been in the fetal position saying I hate being autistic, I hate having meltdowns. And so, you know, I think it's important to talk about how it is hard, even for those of us that are that have gotten to the point where we can both do it and talk to others about how to follow in our footsteps, it doesn't stop being challenging.
SPEAKER_05Well, you know, and I mentioned I was at a conference last this week. I don't know. I can't talk about it. It's in time. Time time in conferences is totally different. But you know, I presented and then I was walking down the hallway and I realized I was stimming. And I didn't realize how, and I'm doing it with my fingers, you can't see it right now because but I and I didn't realize how overwhelmed my system had been until I realized I'm walking down the hallway and I'm stimming. I actually don't, you know, and and that was fine, but I didn't realize how tough that was for me until I was like, I'm stimming and I'm gonna go find my hotel room because I can't people anymore.
SPEAKER_06Yeah. So there's some supports as a college student that can help with that, but that are like a little more obscure to ask for.
SPEAKER_05Well, I think, you know, one of the things that is, you know, when you think about lecture halls, for example, right? I think oh well huge. Yeah, right. Echoey, loud, bright, that kind of thing. I think one of like a support you wouldn't even think to ask for is can we dim the lights on this side of the room?
SPEAKER_06Can we go half on, half off with the fluorescence? That's a great adjustment.
SPEAKER_05Yeah. I think one of the other things you can do if you are somebody who needs to be alone, one of the other obscure accommodations is to talk to residential services about what medical documentation might you need for a single, right? So that you're not in a space with lots and lots of, you know, or you have four roommates or three roommates, that can be very stressful. So is there a way that you can have a single or be put in uh, you know, like a quiet dorm? Um, finding like spaces, like spaces and times where like a dining hall might be quieter is important too. Or You know, some of the things I've seen some colleges do that are really cool is like having a social night where literally your social night is to like go into the room and do your own hobby around other people. So like advocating for that would be so amazing. Like it doesn't have to be any kind of club. It can just be like, I'm gonna knit, you're gonna read, we're gonna be around other people at the same time. And I think that's a powerful thing too.
unknownYeah.
SPEAKER_05Those are reasonable for functionality.
SPEAKER_06Being able to prepare your own food because you have something that affects your ability to eat, totally reasonable. Yep. Um, just like you know, having an access to an elevator or a ground floor room would be for a student with a mobility disability.
unknownYep.
SPEAKER_05Yeah. And so, I mean, and I think just being able to have the opportunity to um understand what are the processes, and that's that's something to be able to ask ahead of time. Like if I have a disagreement or a, you know, a misunderstanding with somebody that I am in class with, with somebody I live with, with somebody, what what do I do? Right. So asking that up front can be an actual like proactive accommodation. Because once you're in the midst of it, if you don't know and you're overwhelmed, and you're, you know, there are a lot of people who autistic people when they're overwhelmed, like they cannot communicate as clearly as they would like to, right? Sometimes we get stuck in our own heads. Um, so I mean, I think there are simple things like that. Asking about where is there a place that if I need support with executive functioning skills like planning, organization, and management, is there a study center? Is there peer tutoring available? You know, those kind of accommodations I think are a little less known.
SPEAKER_06Yeah. But we, you know, knowing where to turn for social issues, for academic issues, before things get to that boiling point, um, and it's hard to even problem solve, and you're worried about controlling impulses that might end up being more destructive than constructive.
SPEAKER_05Absolutely. Absolutely. And I think those are questions that you can ask ahead of time. You can just say, because this is something I want to know. I want to understand about this campus, right? This, or I want to understand about this job. And I think the last thing I would say too is having a plan with your trusted adults, right? It might be your parents, it may be somebody else. And I think that's important to know. You have to know who your trusted adults are in your life. And for some people, it may not be their parents, and that's okay.
SPEAKER_06Yeah, that's totally understandable. Fine.
SPEAKER_05But having a plan as to like, here's when you should worry, right? And I and I that's kind of a funny way to say it, but like, what's your worry plan, right? So, for example, with my son, not a texter, didn't like to, you know, to call. He does now as he's older, but we had a plan where it's like, if I texted him to check in, all you had to do was send me an emoji. That was it. Like, just so I knew he was okay or not okay, right? And I think having those kinds of plans of like, when do you get support and how do you get support is important to know too. And if it's sending a thumbs down emoji to somebody who knows that that means that you need help in some way, that's your plan. Or if it's we're gonna check in every couple of days. And as parents, to be able to, or trusted adults, whoever you are, is to be able to say, like, when I text you, if you don't want to talk, that's totally fine. I just need to know you're okay. Um, how do we do that? Or, you know, when do you want me to get involved? Those kinds of things I think are super important too. Yeah. Yeah. Yeah. And I want to be really clear in saying that probably will I don't know. I was gonna say I was gonna say that probably will never happen. That's not true. It may not always happen. So, like planning for it doesn't mean it's going to happen.
SPEAKER_06Yeah. Planning for it can prevent it from happening. Yeah.
SPEAKER_05Yeah. Because then you're not obsessively worrying about what if it happens and I don't know what to do, right? Yes. Yes. Yeah.
SPEAKER_06Frees up the mental energy for productive growth. Right. Right. Yeah. Absolutely.
SPEAKER_05And I I think the last thing on this that I'd like to say is we spend so much time as a society saying to kids who struggle throughout high school or elementary school, saying, like, don't worry about it. Once you get to college, you'll be fine. Everything's gonna, and I'm like, we need to stop saying that because we don't know that. We don't know that they're gonna flourish and blossom and all those things. So set like being careful not to set people up for the expectation that everything's gonna change and they're gonna be totally different and the world's gonna be different, and people are gonna see them differently once they get to college. I would like to say, like, let's just stop doing that. Let's stop saying that to people. Let's be more realistic in saying there's different opportunity here.
SPEAKER_06Yeah, I haven't heard high school's the best four years of your life in a while. It was certainly not the best four years of mine. So if the next thing we say to kids can be everything's gonna be like stop saying to kids is everything's gonna be great in college, I would like that. Because the reset fantasy, it's a seductive fantasy, but it's not reality. Um, college is a contrived environment, but you're still yourself and there are still normal other people there from all walks of life and experience.
unknownYep.
SPEAKER_05So that's I think that that's that's my I don't know if it's my words of wisdom, but it's my words of wish, right? My words of wish, or I wish that we would stop saying, you know, college is gonna be great, or whatever happens after high school is gonna be when you start fitting in because meh, I don't know Yeah.
SPEAKER_06I mean, the thing with people who are 19 is that they were just 18 and in high school, they don't like magically become accepting because they graduate. It's a process, and yes, as an autistic adult, I have a lot more flexibility in terms of self-accommodating, but I also have an overwhelming amount of responsibility in order to maintain that independence.
SPEAKER_05Um and that that's important for people to to prepare young adults for too, is that becoming an adult is tough. But becoming an autistic adult when you're an autistic young adult may be tougher, yeah, right?
SPEAKER_06Independence and responsibility is incredibly hard for any teenager, but it's extra hard when you've got a disability in the mix.
SPEAKER_05Yeah, absolutely. And the nice thing is there are people like you out there who are honest and open about that and willing to talk about what's hard and also how you're handling it. And I I love that. I love that for all of the all of the students with autism who are going to college. I love that they have a Catherine who they can listen to and realize they're not alone in this process. I really do.
SPEAKER_06Thank you. Yeah, I try. You try to keep up the good work, and too as well. Thank you. All right, thank you for all the great advice. It was so good to talk to you, Amanda.
SPEAKER_05Thanks so much for having me.
SPEAKER_06And now, as promised, here are ways to see the documentary. The documentary film Autism Goes to College is currently available through many channels, but the easiest way to see it today is to rent it on Vimeo On Demand, which you can access from your Apple TV or most smart TVs by going on the Vimeo on Demand app. You can also find a direct link on our website at www.autismgoes to college.org. The film is also available for educational use and live and hybrid screening events. All the relevant info and links can be found on our website. Thank you so much for listening, following us on Instagram, Facebook, and TikTok, and especially for adding your reviews on Apple Podcasts. Our show is specifically for students on the spectrum navigating college, and we really appreciate your support for Autism Goes to College.