College Parent Central Podcast
You don’t stop parenting the day you drop your student off to college on Move-in Day. Your role simply changes. (Actually, it’s not simple at all, but it changes.) You’re a parent for life. Join Lynn Abrahams and Vicki Nelson, higher education professionals and former college parents, as they explore the topics that can help you be a more effective and supportive parent to your college bound student. Whether you already have a child in college, college is still a year or more away, or your student is about to step out, start now to gather the information that empowers you to be an effective college success coach to your student.
College Parent Central Podcast
#131 The Bigger Picture: Neurodiversity and College
Elizabeth and Vicki were joined in this episode by Jane Thierfeld-Brown and Lorraine Wolf, important experts in disability services in higher education. Jane and Lorre shared their insights into the complexities that autistic students face as they transition from high school to college. They shared their personal journeys as well as the work they’ve done together, including their new book, Neurodiversity in College: A Parent’s Guide for Autistic Students. Our conversation will help parents tackle the challenge of shifting from a parental “CEO” role to empowering students to manage their own educational journeys. We discussed how legal and practical responsibilities change from high school to college and why understanding these differences is crucial for a successful transition. In addition to talking about academic guidance, Jane and Lorre highlight the importance of social interaction and co-curricular activities and how building a supportive community around neurodivergent students can empower both students and families.
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Welcome to the College Parent Central podcast. Whether your child is just beginning the college admission process or is already in college, this podcast is for you. You'll find food for thought and information about college and about navigating that delicate balance of guidance, involvement and knowing when to get out of the way. Join your hosts as they share support and a celebration of the amazing experience of having a child in college.
Speaker 2:Welcome everybody. We are here for a live recording of the College Parents Central podcast, and today I am delighted to have my friends and colleagues Lori Wolf and Jane Thierfield-Brown Now. Part of the reason we're talking to them today is that very soon their new book is coming out. You guys know I'm terrible at this, but Neurodiversity in College, a Parent's Guide for Autistic Students, a long awaited new edition with so many updates and new things to talk about and some positive stories, so I am so excited to have them here today. So, vicki, I'm here too, I know, and my co-host Vicki. I'm sorry, folks.
Speaker 2:My co-host Vicki Nelson, who is the founder of College Parent Central. So, ladies, can we just start first by having you introduce yourself and give folks a sense of who you are and why this is your life's work. Jane, go for it. I'm an alphabetical order kind of gal.
Speaker 3:Oh, okay, and I'm saying, Laurie, go ahead and start. Hi everyone, I'm Jane Thierfeld-Brown and I'm honored to be here with Vicki and Elizabeth today. Thanks so much for inviting us. My career has been in disability services for 45 years, a really long time.
Speaker 3:Since we were still trying to get people with physical disabilities onto college campuses In the late 90s, I became more interested in well, actually, in the early 90s I became very interested in college students with autism and started doing lots of research, and I was working with several college students with autism, and in 95, my son was diagnosed with autism, which just made that even more of a passion project for me. Though, Though I was, as I like to say, I was working in college with people on one end of the spectrum, and at home my son is very severe at level three, nonverbal, very symptomatic and also intellectually disabled. So it was a different experience than college students, but it really fueled a lot of my work in many ways, and I sent out a query to our disability service professionals about wondering if anyone was seeing the same thing. I was on campuses with college students with autism. Were they interested in presenting at our national conference? And Lori was one of two or three people who responded and having the connection of not only our disability services careers, but also Lori, had a son with autism, a much more mild form, and gosh.
Speaker 3:That was now. When is our anniversary, Lori? It was more than 25 years ago.
Speaker 4:It was more than 25 years ago.
Speaker 3:We've been together a long time and a number of books later. So we are a fragile X family, which, that is, a genetic inherited form of autism, and I have stopped working. For 23 years I was at UConn Law School as the Director of Student Services, which included disability services, and I left there a number of years ago and moved on to Yale Child Study where I was an assistant clinical professor. Now I just run a group called College Autism Spectrum, and I am of a certain age, shall I say. So I'm moving out towards retiring, as Lori and I both are looking at that. And we have a third colleague, amy Rutherford Moody, who can't be with us today. She's doing a transition workshop for the state of Tennessee and she is taking over a lot of the work for College Autism Spectrum. So that's it in a nutshell, lori.
Speaker 4:Hi, I am Lori Wolf. Thank you, echoing what Jane said, for inviting us to be part of this. We really feel that talking to parents is so important in this work that any opportunity we get to go to parents we jump at. So thank you and thank all of your parents. As Jane said, we've been working together for 25 years.
Speaker 4:I am originally trained as a neuropsychologist and my specialty was neurodevelopmental disorders, what we would now call neurodivergent disorders, autism, adhd, learning disabilities, childhood psychiatric conditions and at the time that I trained, autism was still considered very rare and fairly severe. So when I made the transition from being a clinician researcher to being a disability services professional and I was at Boston University for 27 years I noticed that there were students who looked a lot like my patients and research subjects and I thought this can't be this. You know, this is not what I was trained to recognize. And the real kicker is when a gentleman who's now very well known in the autism community, steve Shore, was my very first openly autistic graduate student in a PhD program. And again it kind of blew my mind because this isn't supposed to happen. And so when Jane put out her query on the Professional Listserv, I jumped at it, because I was also starting to see those signs and clues in my own toddler, and so, you know, we kind of made the full circle of clinicians Jane, you forgot to mention that you're trained as a counselor clinicians, disability service professionals and parents and sort of started this little study group where we read together, worked together, did a lot of presentations, were booed out of some ballrooms and it culminated in a number of publications that we're happy to be updating now.
Speaker 4:I'm recently retired from Boston University where I served as the director of disability and access services and the ADA 504 compliance officer. I held some faculty appointments in rehabilitation sciences and psychiatry and in my newly retired life I am co-teaching in the landmark college professional certification program, which I strongly recommend professionals who may be on this podcast look at, which I strongly recommend professionals who may be on this podcast. Look at I'm. You know not, they didn't ask me to do that plug, but it's a wonderful certificate that teaches professionals how to work with students who are neurodivergent, particularly who have issues in executive functioning and academic functioning. So that's that's who I am, and thank you again.
Speaker 2:You have given us, you know, given us your sort of origin story, and it's been going. Your work has gone on for a long time, so can you talk about changes that you've seen in the college environment since this time? You know, one of the things that you asked me about, too, when you were working on the book was, you know, titles, because the previous title was gosh the Parents' Guide to College Autism. Yes, I get it.
Speaker 3:On the autism spectrum. Yes, the students with autism, oh let's see, I have it here.
Speaker 4:Parents' Guide for College for Students on the Autism Spectrum.
Speaker 2:Yeah, so talk about that, the puzzle piece.
Speaker 3:I'm sorry. No, lori was mentioning the puzzle piece. So yeah, right, lori, do you want to talk about the changes in the environment since the?
Speaker 4:19th century. Yeah, we really did think long and hard about this and we had a lot of discussions with this, about this, with our colleagues, with members of the autism community, to just sort of take the pulse of. You know, because representation and what you, how you refer to somebody, is really important. And you know there were changes in the professional nomenclature. We lost the word Asperger's, we replaced it with autism spectrum. That's been altered more recently to autism and then that's evolved within the community as neurodivergent and so we wanted to honor that. We wanted to be a little more modern but we wanted to be inclusive. So we decided to use the word neurodivergent, but this book really is about autism. So that's how we came up with Neurodivergent Students Parents Guide for Autistic Students. I really thought that that was the most encompassing and respectful way to do it and hopefully has some legs so that this title may last a while, unlike Asperger's, which didn't last a while.
Speaker 5:So I'd like to ask a question too, and before I jump in and ask that, because it has to right with the beginning of the book, I love the title of your first chapter, which is when have you Been and when Are you going.
Speaker 5:And before I ask my question, I just want to throw out there and I hope that parents have been staying with us this far at least into the podcast that this is a very specific episode about parents and autism in college. But as I read your book, so much of what I read in your book applied to all students everywhere. So I hope people will stick with us and I know that families who are getting an autistic student ready for college are really hungry for this information. But it's really useful for everybody and I think that first chapter of where have you been and where are you going really kind of says it for everybody. And you said in that chapter we believe if everyone understands the process of what comes before and what comes after, the transition for college will be smoother. And boy, that's true for everybody. But I'm wondering a little bit about what the inspiration was for that and why you are saying that and how looking at the bigger picture really can make a difference in the moment.
Speaker 3:I'm so glad you asked that question, Vicki. I'm sorry.
Speaker 4:Actually when you're done. I want to just give a little color commentary, because that phrase was mine, and very early on.
Speaker 3:Yes, and I was going to say that Okay. So I'll start. I'm so glad you asked that question, vicki, and thank you, lori, for reminding me. I didn't in my bio say I do have a counseling background and my doctorate's in education and psychology. So Lori and I complement each other well with our backgrounds and our clinical backgrounds. So, as you mentioned that, I remember long ago us saying when we titled that first chapter, where have you Been and when Are you Going?
Speaker 3:We always said when we write the next book, that should be the chapter, that should be the title. And I think that's true. And I'm thinking back all the way to yesterday where I did a training for a school district with elementary school paraprofessionals, which I was thrilled with the opportunity to do because I usually work with maybe middle school and high school paraprofessionals, because I do a lot of transition work and work as a transition consultant in the Farmington School District here in Connecticut, and I always quote our friend and colleague, peter Gerhart who, when asked when does transition start, without missing a beat, he always says in preschool. And that's for everyone. And I try and remind people that in preschool, especially when you look at the special education preschools, you are taught so much independence Okay, push your chair in, you can do it. You can use the bathroom by yourself. Okay, you know how to wash your hands. And we encourage that independence all the way through elementary school. And somewhere along the way parents feel like they have to help their kids so much that they really push the schools and the schools sometimes do it naturally to do things for the students that they could do independently. And they take away a lot of that independence by the time they're through with high school and so our kids end up coming to college with less independent skills than they might have had at the end of elementary school.
Speaker 3:And it happens to a lot of people because we're so concerned about grades, we're concerned about failure. So we have to really look at where have you been and where are you going. And when I work individually with families doing college counseling, my first question is what's the goal? And often that question is really hard to answer and it's also very different for the parents and the student. And then I have to really set the question of so who's going to college here? Are the parents going to college or is the student going to college? And how are we? Who's driving this train, and we really have to ask those questions, and that's where the inspiration for that title comes from, because you really have to look at where you've been to figure out where you're going.
Speaker 3:I want to pass this on to Lori, but the one thing I want to say in the world that we live in, lori and Elizabeth and I, in our disability services world or access services world, this is all called universal design, meaning that things that are taught in specific ways that might help students who have learning differences or difficulties or disabilities, those teaching methods help everyone. They help all students and for all the years that I was working at Yale, when I would do the talk to parents that were in transition, I would usually talk with the Dean of Admissions at Yale. The two of us would present together and after my portion he would always say we really need to go on the road together because everybody needs to hear this. So I do hope people will hang in through this podcast, because it's not just students that have any learning differences. Go ahead, laurie.
Speaker 4:You know really where have you been and where are you going, as this, as Jane said, the mantra of everything that we've, we've done, and from the very beginning.
Speaker 4:I think this was one of the very first slides that I wrote when we first started to do this because, remember, jane and I were in the thick of going through this with our own kids and we felt that elucidating that for disability services professionals was important, so that they would understand the steps that parents are going through, in the hopes that that would help them understand why parents might be, you know, helicopters I don't think we were using that phrase yet why parents might approach the college transition the way that we do, and so to give them a little bit of a window into what the parents are experiencing and I think it was where have they been and where are they going.
Speaker 4:And then we switched it to where have you been and where are you going, as we began to realize how important it was to talk to parents and to really say this is a process and, gee, remember Jane, it goes so far back that I think step one was grieving yes, which we no longer talk about in the parents of children with disabilities world that that is such an old concept of you. Know you have to grieve before you can move forward. We don't look at that anymore. We look at you have to honor and then you can move forward.
Speaker 5:So you know it is a really old mantra that you know it should be the title of our next book. We'll wait for that one to come. Wait a long time, if you guys are retiring.
Speaker 5:We're retiring so that they can spend more time writing. Well, I want to follow that up because I have another question, and I think it's very much related to what you're talking about, and that is you use the term in the book about parents when students are younger, parents being the CEO. Students need to become their own CEO, and I'd like you to kind of help us understand what you mean by that. But also that you talk about for parents to relinquish that role and to give it up to your student can be really scary for all parents as their students go away, and you talk about this early on in the book. But in addition to being scary, it's also very exciting, and so I'm wondering if you could talk a little bit about the CEO concept, but then also whether you have any success stories, that sort of counteract that scariness. That's a lot, but go where you want with that.
Speaker 4:That's okay. Well, let me start and then I'll pass it on to Jane. And this is what we do. We've been doing this together for so long. We finish each other's sentences and thoughts.
Speaker 4:You know parents of youngsters with disabilities have to work really hard to make that happen. That. You know. The laws as they're written are beautiful laws and they, you know, promise a lot of things. But in order to access those things, parents have to work hard and really have to drive that bus, make sure that the meetings are held, make sure that the documents are filed, make sure that the services are provided and followed up on, and really the youngster takes a backseat to all of this. So, you know, we always refer to helicopter parents, but parents of students with disabilities are Blackhawk parents and really you know very much in the life of their students' education.
Speaker 4:When they get to college, the laws shift in a major way so that it is now the student's responsibility to be in the driver's seat. And that's really terrifying for someone who has been in charge of everything from doctor's appointments to physical therapy, to occupational therapy, to making sure that the teachers are doing what they're supposed to do when the students are eating at home, to actually be told by policy, practice and statute that they have to take a back seat comes as a major shock. Parents react in various ways, anger being number one. What do you mean? I'm paying tuition? What do you mean I can't be involved in this? So we really want that process to happen in high school so that everybody is accustomed to what's going to happen and why is it going to happen and how to partner with their student and their college disability office so that it goes smoothly.
Speaker 4:And you know people stay in their lanes. So you know it is terrifying because you know many of our students are vulnerable. They haven't lived away from home, they haven't taken care of themselves, they haven't often been given the opportunity to do that. So it is very scary and I can say firsthand that you know I still wait for the 3 am phone calls and when you know when Facebook, you know, or FaceTime rings at 3 am, I'm up. What's wrong? How can I help? So it kind of never goes away. But you understand that if you want a good outcome, which is a happy, independent, successful young adult, this is a necessary part of it. I have a great success story. Jane, you want to talk first before I?
Speaker 3:No, no, no. But before you tell your student's success story, would you please tell your own son's success story. Could you say the airport-, the airport story. Yeah, would you please tell that, because that's a perfect example of all this
Speaker 4:Yeah, I have twins. They're now Gasp, if you can believe it 27. And we had them traveling a lot when they were independently, when they were younger. We said you know, go to safe places, but you know, be travelers. So one of them I don't even remember which one, and they're both neurodivergent was in an airport and texted me I'm going to miss my plane. And my first thought as Blackhawk mom was I'm going to call the airline, I'm going to call the pilot, I'm going to say stop the plane, he's coming, he's going to get there. And then I, I my training kicked in, my, my lecturing, you know, to other people kicked in, and I responded back to him run faster. And he ran faster. I think he made the flight. I don't remember it was, it was a while ago. But you know, that kind of shift from what comes automatically, as you know, mama bear, to what's in the best interest of my young adult how are they going to learn coping strategies? And that I'm not going to be there to fix every road bump that they come across.
Speaker 2:And what I think is important about that story too is, you know, and my mother always raised me with this, it's not really a game, but like what's the worst thing can happen game, which is you miss your flight, you get on the next flight, and those are things that you can tolerate and that they'll be okay. Yeah.
Speaker 4:But you don't know, you can tolerate it until you've had that experience.
Speaker 3:Exactly, jane, jane. Well, how many people are not allowed to have that experience? Because before they are allowed to try it themselves, somebody is making a phone call for them. And if it's a school issue, before they allow the student to attempt to solve a problem, they're solving the problem for the student because they're worried their kid might not know how to do it.
Speaker 3:I'm going back for a minute to the CEO. That's what we explained, that for all those years you're advocate and CEO of that student's education and suddenly the student is becoming advocate and CEO of their life. And have you given them any training? And would we ever put someone in a CEO position without any training? And yet we feel like it's okay to take over the making the appointments and refilling the meds and calling to order the pizza and making the play dates, because at some point it's easier for us to do. But we've taken away all those learning opportunities and we still expect the student to be able to launch.
Speaker 3:So if we don't start handing some of that back slowly over time, especially with our students with difficulties, it takes time and we have to do one thing at a time. So, parents, if you're listening and you have juniors or seniors and you're saying, oh my gosh, I haven't done this yet. There's time, do one thing a month. If you have to do one thing a week, that's kind of fast in my opinion. If you have a few years, start it slowly and do it reasonably. But you have to start pulling back on what we do for and teach to, because when the parents are responding to emails in college, we're going to say please have your student contact me, thank you very much, and that's it. You know we're not going to communicate with the parents. Rather than the student, laurie, go ahead. You were going to tell a a success story and I have lots of them.
Speaker 4:But I think I'd also like to say that we very often open in our presentations to parents with how many of you woke your son or daughter up this morning.
Speaker 3:Usually three quarters of the people raise their hands.
Speaker 4:Yeah, and we say stop and it's followed by well, they'll miss class. To your next question about you know how does that impact grades, so put that one on hold for a minute. One of my favorite success stories was a youngster who was in our business school at the insistence of their parent who wanted them to take over the family company. And the student was struggling, was not clicking, was not doing well, was avoiding class, was emotionally a wreck, and we were able to sit down with the student and their parent and over a number of sessions the parent relinquished that insistence that they follow in their footsteps. Let the student choose their own major, which was communication and marketing.
Speaker 4:Vicky, the student did really well I still get emails from them that just finished a graduate program in Italy and you know, really was able to break free from that. I'm not doing where my passions are, and not only that, but I'm in such a bad match that it's taking a toll on my health and mental health to a position of being able to live abroad and be successful abroad. So you know it really required massaging the parents' perspective so that they were able to see this is not right for my student and you know I need to let them make decisions here.
Speaker 5:It would strike me that it's hard, for as a parent it's hard to see really far down the road and believe you can accomplish it, and for students as well say that can happen, and then those small steps add up to the goal down. So sometimes looking more immediate and what can we do today or next week or next month might lead us there.
Speaker 3:It's so interesting that you say that, vicki, because I talked about my son and I have three kids, three adult kids. One of my daughters also has fragile X syndrome, but much more mild than my son, because she has the other X genetically and she has ADD and some learning disabilities and she definitely struggled through college and didn't want to access services through disability services. She was tired of being that kid. She just wanted to be like everybody else. She really struggled through it. Now come further down the line where she is 12 or 13 years out of college, having graduated, she wrote the foreword to our book. Having graduated, she wrote the foreword to our book and one of the things that she remembered which I remember saying to her, but I didn't think she ever heard and I actually didn't know it till I read the draft of what she wrote as a foreword.
Speaker 3:But I was always saying to her be where your feet are. She would get so ahead of herself and I was always trying to keep her in the moment and what Elizabeth was talking about what can we do now? What's one thing we can do now? And I was trying to get her to think like that so that she wouldn't get so far ahead. I'm going to flunk. I can't stay here. I don't know what I'm going to do. Can you get the assignment done? I'm going to do you know. Can you get the assignment done? Can you you know? Is there somebody who can help you? Is there those kinds of things? And I think we tend to meet the level of our kids catastrophe and we catastrophize. And again, that's one of those things that it might be more intense with someone who's neurodivergent, but it goes for all students and I think that's really true.
Speaker 2:So go ahead and, as you say and I think it is, and we're going to interview soon, uh, ned Johnson and Bill Stixrud, the authors of the Self-Driven Child, which which is one of my favorites. So what Jane is talking about is the consultant model of parenting, right, asking the questions and getting your student to think about you know what happens next and what supports they can get. And just as a reminder, take a pause, we are here with Jane Thierfield Brown and Lori Wolfe, who are the authors of Neurodiversity and College A Parent's Guide for Autistic Students. So let's talk a little bit about all of these wonderful supportive parents who want to do everything they can for students and who sometimes advocate for accommodations and services and supports at the high school level to sort of maximize their students' success right and get them the highest possible grades and, you know, kind of ease their anxiety about certain things. And then what's happening at the college level and what those supports look like and what may not be present.
Speaker 2:And you know this, and so I realized I haven't even introduced myself today. I am Elizabeth Hamlet and I am, and intensity of supports that your students receive in high school may not be matched by what's available at college. So, jane, do you want to kick us off starting about IDEA, the ADA in Section 504? And you know, the difference is not just in the academic supports but, you know, especially for the autism community, socials and behavioral expectations. There's a lot going on here.
Speaker 3:I'll answer as briefly as possible, because we can take the next two hours. It's a whole book. It's a whole book on it.
Speaker 3:Yeah, you should read the book. It's interesting now because I come at it from a different perspective, since I'm working in high school as the transition person. For some parents. They are so thankful to hear, while they still have time, what they need to do before the next step, because for a lot of people the student that we're talking about is their oldest, so they haven't been through this college transition with it and having them think back to their college transition helps a little. But the world has changed, college has changed. They've changed, so for some parents it's welcome information. Other parents meet with me once and then ban me from ever talking to their student again, and there's several parents who have done that and not allowed me in any other meetings and said number one, I don't want to hear any of this. She doesn't know what she's talking about and I think that that's a defense mechanism and I understand that and I just say that's fine and kind of feed the information through other people who will be meeting with the parent.
Speaker 3:Entitlement based on student success, where once a student graduates, they move to Section 504 of the Rehab Act and the ADA, the Americans with Disabilities Act and the Amendments Acts, and that is not a federal law. Number one, it's civil rights statute of eligibility you have to be otherwise qualified to receive accommodations. And number two, it's an equal access model. Our jobs as disability service professionals are to look at the barriers students might be facing and then provide reasonable accommodations based on level of functional impairment in a major life activity. These are totally different laws and people are expecting the special education services to continue through college. Now, as a parent who was advocating very hard, especially for both my kids who needed services, I knew I had to start scaling back and that my daughter had to take over to prep for college. And what I encourage parents to do is usually students are transitioning during ninth grade. They need some of that support, a lot of that support, in order to learn the new system in that large transition After ninth grade. Once you've got a good, solid footing, you need to start scaling back to a more reasonable level of accommodations in high school.
Speaker 3:Because I look at some of the accommodations the list that some students have on their IEP is longer than what my severely disabled son, who was not going to college, have. Wow, you're expecting your student to be considered otherwise qualified. It's difficult to look at that level of accommodation and think they're ever going to be capable of college. So that's the term I usually use with families and say are you considering your student college capable? Oh yes, of course they're going to college. Well then we need to look at whether these are reasonable and really I have to ask the students sometimes let's go one by one Do you use these accommodations that are on your IEP?
Speaker 3:And many times they're not being used. Families and I get this because I was the same you're afraid to take them off because you're afraid you might get them back. But if they're not being used, you often have to really start pulling back in preparation. Sometimes I don't even say for adulthood, I'm sorry for college, it's for adulthood, because really the goal is not just a college degree, the goal is a successful adult. Earlier this morning I think that one thing that is important to mention is that particularly IDEA is a federal law.
Speaker 4:It is administered at the state and school district level in public schools. So this is something that accrues to public schools at the moment. We don't know what that might look like in the future. So much is you know up in the air and out in social media and in the news cycles. We don't know, but IDEA is a public school statute. Ada, americans with Disabilities Act and Section 504 are federal statutes and they are regulated and overseen by federal agencies. Again, we don't know what that's going to look like, so a lot of what we say today might be different tomorrow.
Speaker 4:I urge parents to look at their states, to look at what things look like, what may or may not be on the table, and to educate yourself. If this is part of your youngster's journey, it's important to know. You know where this is coming from and understanding that you know, with IDEA, the funds are administered at the state and district level. The federal government doesn't put a whole lot of money into the special ed education pool. So you know, look at your state, look at your statutes, look at your district and figure out is this going to impact your family. You know, regardless of which changes we wind up seeing.
Speaker 2:And, importantly, folks, idea only applies at the high school level. It doesn't apply to colleges. So one of the things that people are always asking, and to Jane's point about these long lists of accommodations and IEPs, I have seen parents advise each other oh, senior year, you got to make sure you pile all these accommodations in so that when your student goes to college, hands in the IEP, they say, okay, we're going to do all these things. But IEPs are not legally valid documents that colleges have to follow. As soon as your student either graduates from high school or exits out because they've aged out of the system, idea no longer applies. And so, therefore, while a college might ask to see the IEP as a form of documentation of disability meaning you know paperwork that shows the college that they had a disability and what services they previously received Colleges are not bound by anything that's written into an IEP.
Speaker 2:And if your student is on a 504 plan under Section 504 of the Rehabilitation Act of 1973, that is federal law, as Lori pointed out, and most of the guidance for colleges comes out of Section 504, actually not the ADA, because 504 was written first, but colleges are under subpart E and K-12 schools are under subpart D. So, as Jane already pointed out, we have very different mandates. Our mandate is to provide access, but not work at success the way IDEA requires K-12 schools. So these are important things. Don't expect that your student just needs to secure this plan and you guys, you know, work with somebody to put lots of accommodations in it, and then we provide those accommodations and Jane so just I really it circles back to what we were talking about a few you know moments ago that this is part of understanding the process.
Speaker 4:Yeah, so that the family doesn't berate the disability services officer who is doing their job and the disability service officer doesn't go back and say, oh, where did these parents come from? So you know, really everybody understands the process where people have been and what lane they need to stay in.
Speaker 2:And Lori, when I interviewed you two for my book, you said something that really stuck with me about the importance of families learning the realities of the college environment, which is you don't want us, as disability services professionals, to have to have our first conversation with students, and sometimes with their parents present. You know that the first thing that they hear from us is no, and that will be unavoidable in certain circumstances, but that is why understanding the changes is so important, so that families know what to ask for and know what we'll, you know, to expect from us. So, speaking of which, you know we talked a little bit about academics and grades, but, you know, for the autism community, are there other things that you think, specifically, family should be aware of as we move from that K-12 environment to college?
Speaker 3:One of the things we haven't had time to talk about, but was brought up right at the beginning, is that, especially for neurodivergent students often they have not had the same social opportunities- that neurotypical students have had, and so going to college affords a lot more independence, but it also puts students in some social situations that they may or may not be prepared for.
Speaker 3:Students in some social situations that they may or may not be prepared for, I don't mean just social skills classes, because most of our college students will say I could teach the social skills classes. I've had so much social skills training. It's putting it into practice that I'm not good at, and so it's really more important that we find a way to have students have those social opportunities, whether you have the option to bring your kids to events that are tailored around neurodivergent individuals or something where students can interact with other people no-transcript. Sometimes you're on a group project and it's rare or almost non-existent in college to get group work just all accommodated and do it on your own, which I see much in the high schools. So those kinds of things are really important and just having some social experiences are really important.
Speaker 3:And just having some social experiences. There aren't those safeguards at college like there might be in high school with an individual or adult support or paraprofessionals. That doesn't happen in college, it's not paid for and that's considered personal service from the ADA. So those social opportunities are important because students are going to be independent and need to be able to know how to handle themselves. Laurie, do you want to add to the social piece?
Speaker 4:Yeah, I do, because students spend a larger proportion of their time in what we call in higher education, because we have lots of terms for things we call co-curricular. We call in higher education, because we have lots of terms for things we call co-curricular, things that go along with the academic program. So clubs, organizations, sports, volunteer opportunities are co-curricular activities that are generally set up by a college or university. But then there's also what goes on in a residence hall and you know how do you structure your time. How do you deal with roommates who are partying? How do students who've been perhaps sheltered by you know that Blackhawk parent deal with? You know with sexuality, with dating with you know with sexual violence, with health issues around sex. So you know, all of those things are wrapped into something that parents don't often think about. They don't think that through as much as they think through the academic piece and sort of how do I prepare my student to, you know, manage their free time? How do I help them make good choices about the activities and the people that they're going to be interacting with? And that is actually harder than the academic piece. It's harder because we don't have unless we're also an autistic parent the same frame of reference that you know.
Speaker 4:I thought I knew what my youngsters would encounter in college, based on my own experiences and my profession, but I had no clue until they got there. And you know they shared or they didn't share what their experiences were. So it really is. I think the scarier piece of sending a neurodivergent youngster off to college is I no longer have control. I no longer know who their friends are and I don't know what they're doing. And why would you set your child up for that without having frank conversations as a family about this is what college is all about. You know, here's how you find a mentor. Here's how you find, you know, a student who can help guide you through it, because they you know parents if you haven't heard this before, hear it now. They're not going to listen to you when you tell them about how to manage their social life.
Speaker 2:Well put Laurie, I mean that's a universal. I don't think that's what you're talking about.
Speaker 3:I do want to add, just to make sure as I know we're going over time and we could do an hour on each of these topics but we won't there are specific programs that offer some of the assistance that we're talking about today. There's about 100 across the country at different colleges and universities, and we have a list of those with links and contact on our website, collegeautismspectrumcom. That give you an idea of where these programs are and what they offer. But for parents who are panicked hearing a lot of the information we're talking about today, you may want to think about one of the more specific programs for autistic students, and those will help support your student if they need it, and you can taper off those services too, once your student has adjusted to college and may not need the services anymore.
Speaker 5:So you're right, we are running a little bit over time, but there's so many things we want to ask you about, there's so many things we want to. We may have to say, you know, this is just part one and there will be a part two, but given everything that that we've talked about, one of my questions and again I'm coming to this world from outside the three of you live in this world. I don't but absolutely agree with everything you're saying about students need to be their own CEO. They need to drive the bus. You know all students do. Is there? Given all of that, is there any place for parents at the college level in terms of working with disability services? We know, you know, disability services want to meet with the student, want to work with the student. Parents need to step back. Is there any reasonable, productive way for parents to be involved at all?
Speaker 4:Absolutely. I'm so glad you asked that, that you know we've been drilling parents for ages on how to create a partnership between disability services, the campus, the student and sometimes the support services from home, to understand that we all share a common goal, which is that the student be a successful, independent, gainfully employed young person. That they don't live in an apartment, you know, over the garage, if you know if there's any way to have them, you know, successful and independent outside of that. So you know we really, when we are all on the same page, it becomes easier to work with parents and to remind parents when they, you know, step out of lane. You know how is this going to further our mutual goal and you know our goal is to collectively support your student but not to do for them what they need to be doing for themselves. So communication with a parent is fine, encouraging parents to contact Disability Services or Dean of Students if they notice something that is different or awry or concerned that we're not cutting off you know, contact and conversation, or awry or concerned that we're not cutting off. You know, contact and conversation. We're saying that this is the goal and this is how we are going to achieve it.
Speaker 4:But certainly, if you have a concern, bring it to my attention. I can't necessarily include you in the resolution of that concern, but I want to hear so, letting parents know, because really, what they're asking when parents are intrusive in the process, they want to know, frankly are you going to love my student the way I do? Are you going to take care of them the way I do? Are you going to make sure they get up, they take their meds, they have friends, they go on a date and so you know, resonating with that and saying I get where you're coming from and that's really and the answer is no, I'm not. I understand why you're asking that and I can facilitate your student making those things happen in their life. And you know that bond, that relationship with the parent, can be very productive and very useful. As my business into marketing student discovered that we weren't adversaries, his dad and I. We understood that we're going to work together on this.
Speaker 3:I think that's a great way to put it, laurie, and I think that it's really true. It's not that we're kicking parents to the curb, it's more a matter of you know if somebody is going to write and say I have some real concerns. He or she has lost 15 pounds since they left home. Their mental health doesn't seem good. They were here for a weekend and wouldn't talk those kinds of things. Of course the college would want to know so that we can provide some appropriate resources, so that we can provide some appropriate resources. But the parent needs to know that we have to say to the student your parent's really concerned about you and reached out to me. That makes me concerned. Let's get you to the health services, something like that. Let's get you to a counseling appointment. We can't be the behind-the-scenes person, even if the student doesn't want to listen to the parent. If the parent's going to reach out and say, gee, my kid wasn't feeling good, can you just check on them today? No, that's not something. There's time to do.
Speaker 3:It's important for parents to understand the differences in caseloads. The majority of parents are sending their kids to schools where the special ed case manager or teacher has a caseload around 20 to 25. Some school districts it's as low as 15. The average disability service provider in this country works with between 150 and 700 students. One disability service provider called me last week to talk about how to work with several students that they were working with who were neurodivergent, and I asked what their caseload was and they said 807. Yeah, that's a real high.
Speaker 3:I don't think parents understand the limitations we have. Let's say you're working. Let's scale way back from that and say 400 students. If you have 400 students and they're each taking four classes, oh wow, 1,600 courses for the people you're responsible for. Each of those probably have two or three exams per semester, at least I'm trying to do the math quickly that's 48. I got it.
Speaker 2:It's a lot 4,800 exams.
Speaker 3:So when a parent calls and says my student was so upset, can you make sure they didn't flunk their organic chemistry tests? Mm-hmm.
Speaker 3:I think that's where parents think we're more along the line of that special ed case manager and it's a totally different system. We have so many more students. That's why they need to tell the student, needs to tell us if they're struggling. There's no way we would know and the parents seem to blame us if there's a problem where we don't know there's a problem unless the student tells us, the parent calling us and saying my kid is flunking three of their classes. Really the response has to be can you see if they'll make an appointment to come see me? And the hook in there is can they make the appointment?
Speaker 3:Where a lot of people are like the parent will say I'm getting online now to make an appointment for the student. And if we're at that level, how are we going to get the student to engage? And we try so we're not kicking the parent to the curb. They need to understand this is different, just like it's going to be different when they go to work. Would the parent call the boss to say can you check that he's okay today? You know that's sometimes when you think about it at that level, because really we're the bridge between high school and employment. We're the bridge between high school and employment.
Speaker 5:I think this conversation about the partnership, while we'd love to keep going, is really a good place. That maybe where we have to end for today anyway and really leaving parents with that sense of the partnership that has to happen. One of the ways that we've often described it in workshops that I do is, if you think of a three-legged stool, that you've got the three legs, you've got the college, you've got the student, you've got the family and you need all three to hold the stool up, and if one is longer than the other it's kind of cockeyed. So I think essentially that's what you're saying and then keeping that goal in mind. So that's.
Speaker 5:So I want to just ask a last thought. Do you have a last thought? And then will you share with us again the book? And if parents want to know more, is there a way that they can reach out to you?
Speaker 3:Laurie, please you start with last thoughts.
Speaker 4:Well, you know my last thoughts. And again, it's working with thousands and thousands of students. I actually calculated before I left BU how many students I'd worked with and it was something in the order of 25,000. Ridiculous amount. And my own kids is that you know it's a beautiful thing when it happens and when it goes right and even when it's going wrong it's still a beautiful thing.
Speaker 4:And you know to celebrate your students' successes, to be there for you know support when they're not meeting with success, but understanding that you know this is a marathon, not a sprint. And if there's a hiccup along the way, if there's a rough patch, if there's a roadblock, then you know that's temporary and you know in most cases, you know those things have a way of working out. Everybody works hard. It's not magic but you know, in the long run, for the vast majority of students it is a joyful and successful progression. And the progression piece is important, that you know, particularly with neurodivergent youngsters. These are students who have neurodevelopmental conditions that you know have unfolded over time and you know the successes have unfolded over time. So you know to just take that perspective and not panic. It really is my take home for parents is you know, don't panic. You know, in the vast majority of cases is the outcome that everyone desires.
Speaker 5:Don't panic, but read your book.
Speaker 2:Yes, thank you Read the book so you don't panic.
Speaker 3:I'll say as a closing thought, very briefly, that enjoy and accept your kids for whoever they are.
Speaker 3:And if they're going to college, wow, good for you, that's great. And if they're not, good for you for accepting that, that's great. We've said this for 25 years we need electricians, we need plumbers, we need contractors, we need carpenters. If you're lucky enough to have a young person who wants to explore a trade, oh my gosh, let's encourage that. That's just so important and always will be so.
Speaker 3:I think there's some things that we need to think about and be accepting of and just really enjoy our kids for who they are and accept who they are, and I know that's not always easy.
Speaker 3:So I'll say that that's a closing thought for now, but there's an awful lot more to be said and thought about. So you can reach Lori and I through collegeautismspectrumcom. I know it's a lot to spell, but collegeautismspectrumcom and our book Neurodiversity in College is being published by Future Horizons. It's not yet on their website for pre-order, but it is on Amazon. So if you go to Amazon and put in the title or either of Lori's and my names, it will come up on Amazon for pre-order and I believe the publication date is May 5th. And we so appreciate you having us with you today and thank you for the opportunity and parents. We appreciate all that you do. We know it's not easy and I guess my last word would be as much as you can, find support, find other people that are in your similar situation, like Lori and I had years ago, and that can be the biggest help, not only to you but to your student that you have support helps your student.
Speaker 5:Perfect note to end it on. Thank you so much for giving your time and sharing everything. I hope everyone will head out and pre-order the book, and thank you to everyone who has stayed with this conversation to the end, because it's so important. Thank you to everybody.
Speaker 2:Thanks, ladies.