April 2, 2025 • 58 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
Welcome to the College Parent Central podcast.
Whether your child is justbeginning the college admission
process or is already in college, this podcast is for you.
You'll find food for thoughtand information about college
and about navigating thatdelicate balance of guidance,
involvement and knowing when toget out of the way.
(00:31):
Join your hosts as they sharesupport and a celebration of the
amazing experience of having achild in college.
Speaker 2 (00:44):
Welcome everybody.
We are here for a liverecording of the College Parents
Central podcast, and today I amdelighted to have my friends
and colleagues Lori Wolf andJane Thierfield-Brown Now.
Part of the reason we'retalking to them today is that
(01:05):
very soon their new book iscoming out.
You guys know I'm terrible atthis, but Neurodiversity in
College, a Parent's Guide forAutistic Students, a long
awaited new edition with so manyupdates 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.
(01:30):
I'm sorry, folks.
My co-host Vicki Nelson, who isthe founder of College Parent
Central.
So, ladies, can we just startfirst by having you introduce
yourself and give folks a senseof who you are and why this is
your life's work.
Jane, go for it.
I'm an alphabetical order kindof gal.
Speaker 3 (01:50):
Oh, okay, and I'm saying, Laurie, go ahead and
start.
Hi everyone, I'm JaneThierfeld-Brown and I'm honored
to be here with Vicki andElizabeth today.
Thanks so much for inviting us.
My career has been indisability services for 45 years
, a really long time.
Since we were still trying toget people with physical
(02:13):
disabilities onto collegecampuses In the late 90s, I
became more interested in well,actually, in the early 90s I
became very interested incollege 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
(02:39):
with autism, which just madethat even more of a passion
project for me.
Though, Though I was, as I liketo say, I was working in
college with people on one endof the spectrum, and at home my
son is very severe at levelthree, nonverbal, very
symptomatic and alsointellectually disabled.
So it was a differentexperience than college students
(03:01):
, but it really fueled a lot ofmy work in many ways, and I sent
out a query to our disabilityservice professionals about
wondering if anyone was seeingthe same thing.
I was on campuses with collegestudents with autism.
Were they interested inpresenting at our national
conference?
And Lori was one of two orthree people who responded and
(03:27):
having the connection of notonly our disability services
careers, but also Lori, had ason with autism, a much more
mild form, and gosh.
That was now.
When is our anniversary, Lori?
It was more than 25 years ago.
Speaker 4 (03:41):
It was more than 25 years ago.
Speaker 3 (03:44):
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 Ihave stopped working.
For 23 years I was at UConn LawSchool as the Director of
(04:07):
Student Services, which includeddisability services, and I left
there a number of years ago andmoved on to Yale Child Study
where I was an assistantclinical professor.
Now I just run a group calledCollege Autism Spectrum, and I
am of a certain age, shall I say.
So I'm moving out towardsretiring, as Lori and I both are
(04:30):
looking at that.
And we have a third colleague,amy Rutherford Moody, who can't
be with us today.
She's doing a transitionworkshop for the state of
Tennessee and she is taking overa lot of the work for College
Autism Spectrum.
So that's it in a nutshell,lori.
Speaker 4 (04:49):
Hi, I am Lori Wolf.
Thank you, echoing what Janesaid, for inviting us to be part
of this.
We really feel that talking toparents is so important in this
work that any opportunity we getto go to parents we jump at.
So thank you and thank all ofyour parents.
As Jane said, we've beenworking together for 25 years.
(05:13):
I am originally trained as aneuropsychologist and my
specialty was neurodevelopmentaldisorders, what we would now
call neurodivergent disorders,autism, adhd, learning
disabilities, childhoodpsychiatric conditions and at
the time that I trained, autismwas still considered very rare
and fairly severe.
(05:34):
So when I made the transitionfrom being a clinician
researcher to being a disabilityservices professional and I was
at Boston University for 27years I noticed that there were
students who looked a lot likemy patients and research
subjects and I thought thiscan't be this.
You know, this is not what Iwas trained to recognize.
(05:57):
And the real kicker is when agentleman who's now very well
known in the autism community,steve Shore, was my very first
openly autistic graduate studentin a PhD program.
And again it kind of blew mymind because this isn't supposed
to happen.
And so when Jane put out herquery on the Professional
Listserv, I jumped at it,because I was also starting to
(06:20):
see those signs and clues in myown toddler, and so, you know,
we kind of made the full circleof clinicians Jane, you forgot
to mention that you're trainedas a counselor clinicians,
disability service professionalsand parents and sort of started
this little study group wherewe read together, worked
(06:41):
together, did a lot ofpresentations, were booed out of
some ballrooms and itculminated in a number of
publications that we're happy tobe updating now.
I'm recently retired from BostonUniversity where I served as
the director of disability andaccess services and the ADA 504
(07:01):
compliance officer.
I held some facultyappointments in rehabilitation
sciences and psychiatry and inmy newly retired life I am
co-teaching in the landmarkcollege professional
certification program, which Istrongly recommend professionals
(07:22):
who may be on this podcast lookat, which I strongly recommend
professionals who may be on thispodcast.
Look at I'm.
You know not, they didn't askme to do that plug, but it's a
wonderful certificate thatteaches professionals how to
work with students who areneurodivergent, particularly who
have issues in executivefunctioning and academic
functioning.
So that's that's who I am, andthank you again.
Speaker 2 (07:45):
You have given us, you know, given us your sort of
origin story, and it's beengoing.
Your work has gone on for along time, so can you talk about
changes that you've seen in thecollege environment since this
time?
You know, one of the thingsthat you asked me about, too,
when you were working on thebook was, you know, titles,
(08:06):
because the previous title wasgosh the Parents' Guide to
College Autism.
Yes, I get it.
Speaker 3 (08:13):
On the autism spectrum.
Yes, the students with autism,oh let's see, I have it here.
Speaker 4 (08:18):
Parents' Guide for College for Students on the
Autism Spectrum.
Speaker 2 (08:21):
Yeah, so talk about that, the puzzle piece.
Speaker 3 (08:30):
I'm sorry.
No, lori was mentioning thepuzzle piece.
So yeah, right, lori, do youwant to talk about the changes
in the environment since the?
Speaker 4 (08:36):
19th century.
Yeah, we really did think longand hard about this and we had a
lot of discussions with this,about this, with our colleagues,
with members of the autismcommunity, to just sort of take
the pulse of.
You know, becauserepresentation and what you, how
you refer to somebody, isreally important.
And you know there were changesin the professional
(08:58):
nomenclature.
We lost the word Asperger's, wereplaced it with autism
spectrum.
That's been altered morerecently to autism and then
that's evolved within thecommunity as neurodivergent and
so we wanted to honor that.
We wanted to be a little moremodern but we wanted to be
inclusive.
So we decided to use the wordneurodivergent, but this book
(09:21):
really is about autism.
So that's how we came up withNeurodivergent Students Parents
Guide for Autistic Students.
I really thought that that wasthe most encompassing and
respectful way to do it andhopefully has some legs so that
this title may last a while,unlike Asperger's, which didn't
(09:44):
last a while.
Speaker 5 (09:48):
So I'd like to ask a question too, and before I jump
in and ask that, because it hasto right with the beginning of
the book, I love the title ofyour first chapter, which is
when have you Been and when Areyou going.
And before I ask my question, Ijust want to throw out there and
I hope that parents have beenstaying with us this far at
(10:12):
least into the podcast that thisis a very specific episode
about parents and autism incollege.
But as I read your book, somuch of what I read in your book
applied to all studentseverywhere.
So I hope people will stickwith us and I know that families
(10:32):
who are getting an autisticstudent ready for college are
really hungry for thisinformation.
But it's really useful foreverybody and I think that first
chapter of where have you beenand where are you going really
kind of says it for everybody.
And you said in that chapter webelieve if everyone understands
the process of what comesbefore and what comes after, the
(10:56):
transition for college will besmoother.
And boy, that's true foreverybody.
But I'm wondering a little bitabout what the inspiration was
for that and why you are sayingthat and how looking at the
bigger picture really can make adifference in the moment.
Speaker 3 (11:17):
I'm so glad you asked that question, Vicki.
I'm sorry.
Speaker 4 (11:20):
Actually when you're done.
I want to just give a littlecolor commentary, because that
phrase was mine, and very earlyon.
Speaker 3 (11:27):
Yes, and I was going to say that Okay.
So I'll start.
I'm so glad you asked thatquestion, vicki, and thank you,
lori, for reminding me.
I didn't in my bio say I dohave a counseling background and
my doctorate's in education andpsychology.
So Lori and I complement eachother well with our backgrounds
(11:48):
and our clinical backgrounds.
So, as you mentioned that, Iremember long ago us saying when
we titled that first chapter,where have you Been and when Are
you Going?
We always said when we write thenext book, that should be the
chapter, that should be thetitle.
And I think that's true.
And I'm thinking back all theway to yesterday where I did a
(12:12):
training for a school districtwith elementary school
paraprofessionals, which I wasthrilled with the opportunity to
do because I usually work withmaybe middle school and high
school paraprofessionals,because I do a lot of transition
work and work as a transitionconsultant in the Farmington
School District here inConnecticut, and I always quote
(12:37):
our friend and colleague, peterGerhart who, when asked when
does transition start, withoutmissing a beat, he always says
in preschool.
And that's for everyone.
And I try and remind peoplethat in preschool, especially
when you look at the specialeducation preschools, you are
taught so much independence Okay, push your chair in, you can do
(12:59):
it.
You can use the bathroom byyourself.
Okay, you know how to wash yourhands.
And we encourage thatindependence all the way through
elementary school.
And somewhere along the wayparents feel like they have to
help their kids so much thatthey really push the schools and
the schools sometimes do itnaturally to do things for the
(13:22):
students that they could doindependently.
And they take away a lot ofthat independence by the time
they're through with high schooland so our kids end up coming
to college with less independentskills than they might have had
at the end of elementary school.
And it happens to a lot ofpeople because we're so
concerned about grades, we'reconcerned about failure.
(13:43):
So we have to really look atwhere have you been and where
are you going.
And when I work individuallywith families doing college
counseling, my first question iswhat's the goal?
And often that question isreally hard to answer and it's
also very different for theparents and the student.
(14:03):
And then I have to really setthe question of so who's going
to college here?
Are the parents going tocollege or is the student going
to college?
And how are we?
Who's driving this train, andwe really have to ask those
questions, and that's where theinspiration for that title comes
from, because you really haveto look at where you've been to
(14:26):
figure out where you're going.
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 oraccess services world, this is
all called universal design,meaning that things that are
taught in specific ways thatmight help students who have
(14:48):
learning differences ordifficulties or disabilities,
those teaching methods helpeveryone.
They help all students and forall the years that I was working
at Yale, when I would do thetalk to parents that were in
transition, I would usually talkwith the Dean of Admissions at
Yale.
The two of us would presenttogether and after my portion he
(15:11):
would always say we really needto go on the road together
because everybody needs to hearthis.
So I do hope people will hangin through this podcast, because
it's not just students thathave any learning differences.
Go ahead, laurie.
Speaker 4 (15:26):
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 thevery beginning.
I think this was one of the veryfirst slides that I wrote when
we first started to do thisbecause, remember, jane and I
were in the thick of goingthrough this with our own kids
and we felt that elucidatingthat for disability services
(15:47):
professionals was important, sothat they would understand the
steps that parents are goingthrough, in the hopes that that
would help them understand whyparents might be, you know,
helicopters I don't think wewere using that phrase yet why
parents might approach thecollege transition the way that
we do, and so to give them alittle bit of a window into what
(16:07):
the parents are experiencingand I think it was where have
they been and where are theygoing.
And then we switched it to wherehave you been and where are you
going, as we began to realizehow important it was to talk to
parents and to really say thisis a process and, gee, remember
Jane, it goes so far back that Ithink step one was grieving yes
(16:28):
, which we no longer talk aboutin the parents of children with
disabilities world that that issuch an old concept of you.
Know you have to grieve beforeyou can move forward.
We don't look at that anymore.
We look at you have to honorand then you can move forward.
Speaker 5 (16:48):
So you know it is a really old mantra that you know
it should be the title of ournext book.
We'll wait for that one to come.
Wait a long time, if you guysare retiring.
We're retiring so that they canspend more time writing.
Well, I want to follow that upbecause I have another question,
and I think it's very muchrelated to what you're talking
about, and that is you use theterm in the book about parents
(17:12):
when students are younger,parents being the CEO.
Students need to become theirown CEO, and I'd like you to
kind of help us understand whatyou mean by that.
But also that you talk aboutfor parents to relinquish that
(17:36):
role and to give it up to yourstudent can be really scary for
all parents as their students goaway, 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 talka little bit about the CEO
(17:57):
concept, but then also whetheryou have any success stories,
that sort of counteract thatscariness.
That's a lot, but go where youwant with that.
Speaker 4 (18:09):
That's okay.
Well, let me start and thenI'll pass it on to Jane.
And this is what we do.
We've been doing this togetherfor so long.
We finish each other'ssentences and thoughts.
You know parents of youngsterswith disabilities have to work
really hard to make that happen.
That.
You know.
The laws as they're written arebeautiful laws and they, you
(18:29):
know, promise a lot of things.
But in order to access thosethings, parents have to work
hard and really have to drivethat bus, make sure that the
meetings are held, make surethat the documents are filed,
make sure that the services areprovided and followed up on, and
really the youngster takes abackseat to all of this.
(18:50):
So, you know, we always referto helicopter parents, but
parents of students withdisabilities are Blackhawk
parents and really you know verymuch in the life of their
students' education.
When they get to college, thelaws shift in a major way so
that it is now the student'sresponsibility to be in the
(19:10):
driver's seat.
And that's really terrifyingfor someone who has been in
charge of everything fromdoctor's appointments to
physical therapy, tooccupational therapy, to making
sure that the teachers are doingwhat they're supposed to do
when the students are eating athome, to actually be told by
policy, practice and statutethat they have to take a back
(19:31):
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 beinvolved in this?
So we really want that processto happen in high school so that
everybody is accustomed towhat's going to happen and why
is it going to happen and how topartner with their student and
(19:52):
their college disability officeso that it goes smoothly.
And you know people stay intheir lanes.
So you know it is terrifyingbecause you know many of our
students are vulnerable.
They haven't lived away fromhome, they haven't taken care of
themselves, they haven't oftenbeen given the opportunity to do
that.
So it is very scary and I cansay firsthand that you know I
(20:15):
still wait for the 3 am phonecalls and when you know when
Facebook, you know, or FaceTimerings 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 youwant a good outcome, which is a
happy, independent, successfulyoung adult, this is a necessary
(20:36):
part of it.
I have a great success story.
Jane, you want to talk firstbefore I?
Speaker 3 (20:41):
No, no, no.
But before you tell yourstudent's success story, would
you please tell your own son'ssuccess story.
Could you say the airport-, theairport story.
Yeah, would you please tellthat, because that's a perfect
example of all this
Speaker 4 (20:56):
Yeah, I have twins.
They're now Gasp, if you canbelieve it 27.
And we had them traveling a lotwhen they were independently,
when they were younger.
We said you know, go to safeplaces, but you know, be
travelers.
So one of them I don't evenremember which one, and they're
both neurodivergent was in anairport and texted me I'm going
(21:17):
to miss my plane.
And my first thought asBlackhawk mom was I'm going to
call the airline, I'm going tocall the pilot, I'm going to say
stop the plane, he's coming,he's going to get there.
And then I, I my trainingkicked in, my, my lecturing, you
know, to other people kicked in, and I responded back to him
run faster.
And he ran faster.
(21:39):
I think he made the flight.
I don't remember it was, it wasa while ago.
But you know, that kind ofshift from what comes
automatically, as you know, mamabear, to what's in the best
interest of my young adult howare they going to learn coping
strategies?
And that I'm not going to bethere to fix every road bump
(22:00):
that they come across.
Speaker 2 (22:02):
And what I think is important about that story too
is, you know, and my motheralways raised me with this, it's
not really a game, but likewhat's the worst thing can
happen game, which is you missyour flight, you get on the next
flight, and those are thingsthat you can tolerate and that
they'll be okay.
Yeah.
Speaker 4 (22:19):
But you don't know, you can tolerate it until you've
had that experience.
Speaker 3 (22:22):
Exactly, jane, jane.
Well, how many people are notallowed to have that experience?
Because before they are allowedto 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'reworried their kid might not know
(22:45):
how to do it.
I'm going back for a minute tothe CEO.
That's what we explained, thatfor all those years you're
advocate and CEO of thatstudent's education and suddenly
the student is becomingadvocate and CEO of their life.
And have you given them anytraining?
And would we ever put someonein a CEO position without any
(23:10):
training?
And yet we feel like it's okayto take over the making the
appointments and refilling themeds 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 thoselearning opportunities and we
still expect the student to beable to launch.
(23:30):
So if we don't start handingsome of that back slowly over
time, especially with ourstudents with difficulties, it
takes time and we have to do onething at a time.
So, parents, if you'relistening and you have juniors
or seniors and you're saying, ohmy gosh, I haven't done this
yet.
There's time, do one thing amonth.
If you have to do one thing aweek, that's kind of fast in my
(23:52):
opinion.
If you have a few years, startit slowly and do it reasonably.
But you have to start pullingback on what we do for and teach
to, because when the parentsare responding to emails in
college, we're going to sayplease have your student contact
me, thank you very much, andthat's it.
(24:14):
You know we're not going tocommunicate with the parents.
Rather than the student, laurie, go ahead.
You were going to tell a asuccess story and I have lots of
them.
Speaker 4 (24:23):
But I think I'd also like to say that we very often
open in our presentations toparents with how many of you
woke your son or daughter upthis morning.
Speaker 3 (24:39):
Usually three quarters of the people raise
their hands.
Speaker 4 (24:42):
Yeah, and we say stop and it's followed by well,
they'll miss class.
To your next question about youknow how does that impact
grades, so put that one on holdfor a minute.
One of my favorite successstories was a youngster who was
in our business school at theinsistence of their parent who
wanted them to take over thefamily company.
(25:04):
And the student was struggling,was not clicking, was not doing
well, was avoiding class, wasemotionally a wreck, and we were
able to sit down with thestudent and their parent and
over a number of sessions theparent relinquished that
insistence that they follow intheir footsteps.
Let the student choose theirown major, which was
(25:25):
communication and marketing.
Vicky, the student did reallywell I still get emails from
them that just finished agraduate program in Italy and
you know, really was able tobreak free from that.
I'm not doing where my passionsare, and not only that, but I'm
in such a bad match that it'staking a toll on my health and
(25:46):
mental health to a position ofbeing able to live abroad and be
successful abroad.
So you know it really requiredmassaging the parents'
perspective so that they wereable to see this is not right
for my student and you know Ineed to let them make decisions
here.
Speaker 5 (26:05):
It would strike me that it's hard, for as a parent
it's hard to see really far downthe road and believe you can
accomplish it, and for studentsas well say that can happen, and
(26:30):
then those small steps add upto the goal down.
So sometimes looking moreimmediate and what can we do
today or next week or next monthmight lead us there.
Speaker 3 (26:39):
It's so interesting that you say that, vicki,
because I talked about my sonand I have three kids, three
adult kids.
One of my daughters also hasfragile X syndrome, but much
more mild than my son, becauseshe has the other X genetically
and she has ADD and somelearning disabilities and she
(27:01):
definitely struggled throughcollege and didn't want to
access services throughdisability services.
She was tired of being that kid.
She just wanted to be likeeverybody else.
She really struggled through it.
Now come further down the linewhere she is 12 or 13 years out
(27:24):
of college, having graduated,she wrote the foreword to our
book.
Having graduated, she wrote theforeword to our book and one of
the things that she rememberedwhich I remember saying to her,
but I didn't think she everheard and I actually didn't know
it till I read the draft ofwhat she wrote as a foreword.
But I was always saying to herbe where your feet are.
(27:45):
She would get so ahead ofherself and I was always trying
to keep her in the moment andwhat Elizabeth was talking about
what can we do now?
What's one thing we can do now?
And I was trying to get her tothink 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 todo.
Can you get the assignment done?
(28:08):
I'm going to do you know.
Can you get the assignment done?
Can you you know?
Is there somebody who can helpyou?
Is there those kinds of things?
And I think we tend to meet thelevel of our kids catastrophe
and we catastrophize.
And again, that's one of thosethings that it might be more
(28:28):
intense with someone who'sneurodivergent, but it goes for
all students and I think that'sreally true.
Speaker 2 (28:36):
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-DrivenChild, which which is one of my
favorites.
So what Jane is talking aboutis the consultant model of
parenting, right, asking thequestions and getting your
student to think about you knowwhat happens next and what
(28:59):
supports they can get.
And just as a reminder, take apause, we are here with Jane
Thierfield Brown and Lori Wolfe,who are the authors of
Neurodiversity and College AParent's Guide for Autistic
Students.
So let's talk a little bitabout all of these wonderful
supportive parents who want todo everything they can for
students and who sometimesadvocate for accommodations and
(29:25):
services and supports at thehigh school level to sort of
maximize their students' successright and get them the highest
possible grades and, you know,kind of ease their anxiety about
certain things.
And then what's happening atthe college level and what those
supports look like and what maynot be present.
And you know this, and so Irealized I haven't even
(29:48):
introduced myself today.
I am Elizabeth Hamlet and I am,and intensity of supports that
your students receive in highschool may not be matched by
(30:12):
what's available at college.
So, jane, do you want to kickus off starting about IDEA, the
ADA in Section 504?
And you know, the difference isnot just in the academic
supports but, you know,especially for the autism
community, socials andbehavioral expectations.
There's a lot going on here.
Speaker 3 (30:32):
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.
Yeah, you should read the book.
It's interesting now because Icome at it from a different
perspective, since I'm workingin high school as the transition
person.
For some parents.
They are so thankful to hear,while they still have time, what
(30:56):
they need to do before the nextstep, because for a lot of
people the student that we'retalking about is their oldest,
so they haven't been throughthis college transition with it
and having them think back totheir college transition helps a
little.
But the world has changed,college has changed.
They've changed, so for someparents it's welcome information
(31:19):
.
Other parents meet with me onceand then ban me from ever
talking to their student again,and there's several parents who
have done that and not allowedme in any other meetings and
said number one, I don't want tohear any of this.
She doesn't know what she'stalking about and I think that
(31:44):
that's a defense mechanism and Iunderstand that and I just say
that's fine and kind of feed theinformation through other
people who will be meeting withthe parent.
(32:14):
Entitlement based on studentsuccess, where once a student
graduates, they move to Section504 of the Rehab Act and the ADA
, the Americans withDisabilities Act and the
Amendments Acts, and that is nota federal law.
Number one, it's civil rightsstatute of eligibility you have
to be otherwise qualified toreceive accommodations.
And number two, it's an equalaccess model.
(32:35):
Our jobs as disability serviceprofessionals are to look at the
barriers students might befacing and then provide
reasonable accommodations basedon level of functional
impairment in a major lifeactivity.
These are totally differentlaws and people are expecting
(32:55):
the special education servicesto continue through college.
Now, as a parent who wasadvocating very hard, especially
for both my kids who neededservices, I knew I had to start
scaling back and that mydaughter had to take over to
(33:17):
prep for college.
And what I encourage parents todo 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 thatlarge transition After ninth
grade.
Once you've got a good, solidfooting, you need to start
(33:37):
scaling back to a morereasonable level of
accommodations in high school.
Because I look at some of theaccommodations the list that
some students have on their IEPis longer than what my severely
disabled son, who was not goingto college, have.
Wow, you're expecting yourstudent to be considered
(33:58):
otherwise qualified.
It's difficult to look at thatlevel of accommodation and think
they're ever going to becapable of college.
So that's the term I usuallyuse with families and say are
you considering your studentcollege capable?
Oh yes, of course they're goingto college.
Well then we need to look atwhether these are reasonable and
(34:20):
really I have to ask thestudents sometimes let's go one
by one Do you use theseaccommodations that are on your
IEP?
And many times they're not beingused.
Families and I get this becauseI was the same you're afraid to
take them off because you'reafraid you might get them back.
But if they're not being used,you often have to really start
(34:42):
pulling back in preparation.
Sometimes I don't even say foradulthood, I'm sorry for college
, it's for adulthood, becausereally the goal is not just a
college degree, the goal is asuccessful adult.
Earlier this morning I thinkthat one thing that is important
(35:03):
to mention is that particularlyIDEA is a federal law.
Speaker 4 (35:19):
It is administered at the state and school district
level in public schools.
So this is something thataccrues to public schools at the
moment.
We don't know what that mightlook like in the future.
So much is you know up in theair and out in social media and
in the news cycles.
We don't know, but IDEA is apublic school statute.
(35:43):
Ada, americans withDisabilities Act and Section 504
are federal statutes and theyare regulated and overseen by
federal agencies.
Again, we don't know whatthat's going to look like, so a
lot of what we say today mightbe different tomorrow.
I urge parents to look at theirstates, to look at what things
(36:06):
look like, what may or may notbe on the table, and to educate
yourself.
If this is part of youryoungster's journey, it's
important to know.
You know where this is comingfrom and understanding that you
know, with IDEA, the funds areadministered at the state and
district level.
The federal government doesn'tput a whole lot of money into
(36:27):
the special ed education pool.
So you know, look at your state, look at your statutes, look at
your district and figure out isthis going to impact your
family.
You know, regardless of whichchanges we wind up seeing.
Speaker 2 (36:42):
And, importantly, folks, idea only applies at the
high school level.
It doesn't apply to colleges.
So one of the things thatpeople are always asking, and to
Jane's point about these longlists of accommodations and IEPs
, I have seen parents adviseeach other oh, senior year, you
got to make sure you pile allthese accommodations in so that
(37:03):
when your student goes tocollege, hands in the IEP, they
say, okay, we're going to do allthese things.
But IEPs are not legally validdocuments that colleges have to
follow.
As soon as your student eithergraduates from high school or
exits out because they've agedout of the system, idea no
longer applies.
And so, therefore, while acollege might ask to see the IEP
(37:26):
as a form of documentation ofdisability meaning you know
paperwork that shows the collegethat they had a disability and
what services they previouslyreceived Colleges are not bound
by anything that's written intoan IEP.
And if your student is on a 504plan under Section 504 of the
Rehabilitation Act of 1973, thatis federal law, as Lori pointed
(37:49):
out, and most of the guidancefor colleges comes out of
Section 504, actually not theADA, because 504 was written
first, but colleges are undersubpart E and K-12 schools are
under subpart D.
So, as Jane already pointed out, we have very different
mandates.
Our mandate is to provideaccess, but not work at success
(38:13):
the way IDEA requires K-12schools.
So these are important things.
Don't expect that your studentjust needs to secure this plan
and you guys, you know, workwith somebody to put lots of
accommodations in it, and thenwe provide those accommodations
and Jane so just I really itcircles back to what we were
talking about a few you knowmoments ago that this is part of
(38:35):
understanding the process.
Speaker 4 (38:36):
Yeah, so that the family doesn't berate the
disability services officer whois doing their job and the
disability service officerdoesn't go back and say, oh,
where did these parents comefrom?
So you know, really everybodyunderstands the process where
people have been and what lanethey need to stay in.
Speaker 2 (38:53):
And Lori, when I interviewed you two for my book,
you said something that reallystuck with me about the
importance of families learningthe realities of the college
environment, which is you don'twant us, as disability services
professionals, to have to haveour first conversation with
students, and sometimes withtheir parents present.
You know that the first thingthat they hear from us is no,
(39:15):
and that will be unavoidable incertain circumstances, but that
is why understanding the changesis so important, so that
families know what to ask forand know what we'll, you know,
to expect from us.
So, speaking of which, you knowwe talked a little bit about
academics and grades, but, youknow, for the autism community,
(39:37):
are there other things that youthink, specifically, family
should be aware of as we movefrom that K-12 environment to
college?
Speaker 3 (39:44):
One of the things we haven't had time to talk about,
but was brought up right at thebeginning, is that, especially
for neurodivergent studentsoften they have not had the same
social opportunities- thatneurotypical students have had,
and so going to college affordsa lot more independence, but it
also puts students in somesocial situations that they may
(40:07):
or may not be prepared for.
Students in some socialsituations that they may or may
not be prepared for, I don'tmean just social skills classes,
because most of our collegestudents will say I could teach
the social skills classes.
I've had so much social skillstraining.
It's putting it into practicethat I'm not good at, and so
it's really more important thatwe find a way to have students
(40:29):
have those social opportunities,whether you have the option to
bring your kids to events thatare tailored around
neurodivergent individuals orsomething where students can
interact with other peopleno-transcript.
(41:09):
Sometimes you're on a groupproject and it's rare or almost
non-existent in college to getgroup work just all accommodated
and do it on your own, which Isee much in the high schools.
So those kinds of things arereally important and just having
some social experiences arereally important.
(41:31):
And just having some socialexperiences.
There aren't those safeguardsat college like there might be
in high school with anindividual or adult support or
paraprofessionals.
That doesn't happen in college,it's not paid for and that's
considered personal service fromthe ADA.
So those social opportunitiesare important because students
are going to be independent andneed to be able to know how to
(41:54):
handle themselves.
Laurie, do you want to add tothe social piece?
Speaker 4 (41:59):
Yeah, I do, because students spend a larger
proportion of their time in whatwe call in higher education,
because we have lots of termsfor 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 thatare generally set up by a
(42:21):
college or university.
But then there's also what goeson in a residence hall and you
know how do you structure yourtime.
How do you deal with roommateswho are partying?
How do students who've beenperhaps sheltered by you know
that Blackhawk parent deal with?
You know with sexuality, withdating with you know with sexual
violence, with health issuesaround sex.
(42:43):
So you know, all of thosethings are wrapped into
something that parents don'toften think about.
They don't think that throughas much as they think through
the academic piece and sort ofhow do I prepare my student to,
you know, manage their free time?
How do I help them make goodchoices about the activities and
the people that they're goingto be interacting with?
(43:03):
And that is actually harderthan the academic piece.
It's harder because we don'thave unless we're also an
autistic parent the same frameof reference that you know.
I thought I knew what myyoungsters would encounter in
college, based on my ownexperiences and my profession,
but I had no clue until they gotthere.
(43:25):
And you know they shared orthey didn't share what their
experiences were.
So it really is.
I think the scarier piece ofsending a neurodivergent
youngster off to college is I nolonger have control.
I no longer know who theirfriends are and I don't know
what they're doing.
And why would you set yourchild up for that without having
frank conversations as a familyabout this is what college is
(43:50):
all about.
You know, here's how you find amentor.
Here's how you find, you know,a student who can help guide you
through it, because they youknow parents if you haven't
heard this before, hear it now.
They're not going to listen toyou when you tell them about how
to manage their social life.
Speaker 2 (44:05):
Well put Laurie, I mean that's a universal.
I don't think that's whatyou're talking about.
Speaker 3 (44:13):
I do want to add, just to make sure as I know
we're going over time and wecould do an hour on each of
these topics but we won't thereare specific programs that offer
some of the assistance thatwe're talking about today.
There's about 100 across thecountry at different colleges
and universities, and we have alist of those with links and
(44:36):
contact on our website,collegeautismspectrumcom.
That give you an idea of wherethese programs are and what they
offer.
But for parents who arepanicked hearing a lot of the
information we're talking abouttoday, you may want to think
about one of the more specificprograms for autistic students,
(44:57):
and those will help support yourstudent if they need it, and
you can taper off those servicestoo, once your student has
adjusted to college and may notneed the services anymore.
Speaker 5 (45:10):
So you're right, we are running a little bit over
time, but there's so many thingswe want to ask you about,
there's so many things we wantto.
We may have to say, you know,this is just part one and there
will be a part two, but giveneverything that that we've
talked about, one of myquestions and again I'm coming
(45:32):
to this world from outside thethree of you live in this world.
I don't but absolutely agreewith everything you're saying
about students need to be theirown CEO.
They need to drive the bus.
You know all students do.
Is there?
(45:53):
Given all of that, is there anyplace for parents at the
college level in terms ofworking with disability services
?
We know, you know, disabilityservices want to meet with the
student, want to work with thestudent.
Parents need to step back.
Is there any reasonable,productive way for parents to be
involved at all?
Speaker 4 (46:16):
Absolutely.
I'm so glad you asked that,that you know we've been
drilling parents for ages on howto create a partnership between
disability services, the campus, the student and sometimes the
support services from home, tounderstand that we all share a
common goal, which is that thestudent be a successful,
(46:37):
independent, gainfully employedyoung person.
That they don't live in anapartment, you know, over the
garage, if you know if there'sany way to have them, you know,
successful and independentoutside of that.
So you know we really, when weare all on the same page, it
becomes easier to work withparents and to remind parents
(46:59):
when they, you know, step out oflane.
You know how is this going tofurther our mutual goal and you
know our goal is to collectivelysupport your student but not to
do for them what they need tobe doing for themselves.
So communication with a parentis fine, encouraging parents to
contact Disability Services orDean of Students if they notice
(47:22):
something that is different orawry or concerned that we're not
cutting off you know, contactand conversation, or awry or
concerned that we're not cuttingoff.
You know, contact andconversation.
We're saying that this is thegoal and this is how we are
going to achieve it.
But certainly, if you have aconcern, bring it to my
attention.
I can't necessarily include youin the resolution of that
concern, but I want to hear so,letting parents know, because
(47:45):
really, what they're asking whenparents 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 ofthem the way I do?
Are you going to make sure theyget up, they take their meds,
they have friends, they go on adate and so you know, resonating
with that and saying I getwhere you're coming from and
that's really and the answer isno, I'm not.
(48:08):
I understand why you're askingthat and I can facilitate your
student making those thingshappen in their life.
And you know that bond, thatrelationship with the parent,
can be very productive and veryuseful.
As my business into marketingstudent discovered that we
weren't adversaries, his dad andI.
We understood that we're goingto work together on this.
Speaker 3 (48:33):
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 kickingparents to the curb, it's more a
matter of you know if somebodyis going to write and say I have
some real concerns.
He or she has lost 15 poundssince they left home.
(48:55):
Their mental health doesn'tseem good.
They were here for a weekendand wouldn't talk those kinds of
things.
Of course the college wouldwant to know so that we can
provide some appropriateresources, so that we can
provide some appropriateresources.
But the parent needs to knowthat we have to say to the
student your parent's reallyconcerned about you and reached
out to me.
(49:15):
That makes me concerned.
Let's get you to the healthservices, something like that.
Let's get you to a counselingappointment.
We can't be thebehind-the-scenes person, even
if the student doesn't want tolisten to the parent.
If the parent's going to reachout and say, gee, my kid wasn't
(49:36):
feeling good, can you just checkon them today?
No, that's not something.
There's time to do.
It's important for parents tounderstand the differences in
caseloads.
The majority of parents aresending their kids to schools
where the special ed casemanager or teacher has a
caseload around 20 to 25.
Some school districts it's aslow as 15.
(49:57):
The average disability serviceprovider in this country works
with between 150 and 700students.
One disability service providercalled me last week to talk
about how to work with severalstudents that they were working
with who were neurodivergent,and I asked what their caseload
(50:19):
was and they said 807.
Yeah, that's a real high.
I don't think parents understandthe limitations we have.
Let's say you're working.
Let's scale way back from thatand say 400 students.
If you have 400 students andthey're each taking four classes
, oh wow, 1,600 courses for thepeople you're responsible for.
(50:45):
Each of those probably have twoor three exams per semester, at
least I'm trying to do the mathquickly that's 48.
I got it.
Speaker 2 (50:56):
It's a lot 4,800 exams.
Speaker 3 (51:00):
So when a parent calls and says my student was so
upset, can you make sure theydidn't flunk their organic
chemistry tests?
Mm-hmm.
I think that's where parentsthink we're more along the line
of that special ed case managerand it's a totally different
system.
We have so many more students.
(51:21):
That's why they need to tellthe student, needs to tell us if
they're struggling.
There's no way we would knowand the parents seem to blame us
if there's a problem where wedon't know there's a problem
unless the student tells us, theparent calling us and saying my
kid is flunking three of theirclasses.
(51:43):
Really the response has to becan you see if they'll make an
appointment to come see me?
And the hook in there is canthey make the appointment?
Where a lot of people are likethe parent will say I'm getting
online now to make anappointment for the student.
And if we're at that level, howare we going to get the student
(52:08):
to engage?
And we try so we're not kickingthe parent to the curb.
They need to understand this isdifferent, just like it's going
to be different when they go towork.
Would the parent call the bossto say can you check that he's
okay today?
You know that's sometimes whenyou think about it at that level
, because really we're thebridge between high school and
(52:30):
employment.
We're the bridge between highschool and employment.
Speaker 5 (52:34):
I think this conversation about the
partnership, while we'd love tokeep going, is really a good
place.
That maybe where we have to endfor today anyway and really
(52:55):
leaving parents with that senseof the partnership that has to
happen.
One of the ways that we'veoften described it in workshops
that I do is, if you think of athree-legged stool, that you've
got the three legs, you've gotthe college, you've got the
student, you've got the familyand you need all three to hold
the stool up, and if one islonger than the other it's kind
(53:17):
of cockeyed.
So I think essentially that'swhat you're saying and then
keeping that goal in mind.
So that's.
So I want to just ask a lastthought.
Do you have a last thought?
And then will you share with usagain the book?
And if parents want to knowmore, is there a way that they
(53:39):
can reach out to you?
Speaker 3 (53:41):
Laurie, please you start with last thoughts.
Speaker 4 (53:44):
Well, you know my last thoughts.
And again, it's working withthousands and thousands of
students.
I actually calculated before Ileft BU how many students I'd
worked with and it was somethingin the order of 25,000.
Ridiculous amount.
And my own kids is that youknow it's a beautiful thing when
it happens and when it goesright and even when it's going
(54:06):
wrong it's still a beautifulthing.
And you know to celebrate yourstudents' successes, to be there
for you know support whenthey're not meeting with success
, but understanding that youknow this is a marathon, not a
sprint.
And if there's a hiccup alongthe way, if there's a rough
(54:27):
patch, if there's a roadblock,then you know that's temporary
and you know in most cases, youknow those things have a way of
working out.
Everybody works hard.
It's not magic but you know, inthe long run, for the vast
majority of students it is ajoyful and successful
(54:49):
progression.
And the progression piece isimportant, that you know,
particularly with neurodivergentyoungsters.
These are students who haveneurodevelopmental conditions
that you know have unfolded overtime and you know the successes
have unfolded over time.
So you know to just take thatperspective and not panic.
(55:10):
It really is my take home forparents is you know, don't panic
.
You know, in the vast majorityof cases is the outcome that
everyone desires.
Speaker 5 (55:25):
Don't panic, but read your book.
Speaker 2 (55:27):
Yes, thank you Read the book so you don't panic.
Speaker 3 (55:32):
I'll say as a closing thought, very briefly, that
enjoy and accept your kids forwhoever they are.
And if they're going to college,wow, good for you, that's great
.
And if they're not, good foryou for accepting that, that's
great.
(55:53):
We've said this for 25 years weneed electricians, we need
plumbers, we need contractors,we need carpenters.
If you're lucky enough to havea young person who wants to
explore a trade, oh my gosh,let's encourage that.
That's just so important andalways will be so.
(56:16):
I think there's some things thatwe need to think about and be
accepting of and just reallyenjoy our kids for who they are
and accept who they are, and Iknow that's not always easy.
So I'll say that that's aclosing thought for now, but
there's an awful lot more to besaid and thought about.
So you can reach Lori and Ithrough collegeautismspectrumcom
(56:41):
.
I know it's a lot to spell, butcollegeautismspectrumcom and
our book Neurodiversity inCollege is being published by
Future Horizons.
It's not yet on their websitefor pre-order, but it is on
Amazon.
So if you go to Amazon and putin the title or either of Lori's
(57:03):
and my names, it will come upon Amazon for pre-order and I
believe the publication date isMay 5th.
And we so appreciate you havingus with you today and thank you
for the opportunity and parents.
We appreciate all that you do.
We know it's not easy and Iguess my last word would be as
(57:25):
much as you can, find support,find other people that are in
your similar situation, likeLori and I had years ago, and
that can be the biggest help,not only to you but to your
student that you have supporthelps your student.
Speaker 5 (57:45):
Perfect note to end it on.
Thank you so much for givingyour time and sharing everything
.
I hope everyone will head outand pre-order the book, and
thank you to everyone who hasstayed with this conversation to
the end, because it's soimportant.
Thank you to everybody.
Speaker 2 (58:07):
Thanks, ladies.
Welcome to the College Parent Central podcast.
Whether your child is justbeginning the college admission
process or is already in college, this podcast is for you.
You'll find food for thoughtand information about college
and about navigating thatdelicate balance of guidance,
involvement and knowing when toget out of the way.
(00:31):
Join your hosts as they sharesupport and a celebration of the
amazing experience of having achild in college.
Speaker 2 (00:44):
Welcome everybody.
We are here for a liverecording of the College Parents
Central podcast, and today I amdelighted to have my friends
and colleagues Lori Wolf andJane Thierfield-Brown Now.
Part of the reason we'retalking to them today is that
(01:05):
very soon their new book iscoming out.
You guys know I'm terrible atthis, but Neurodiversity in
College, a Parent's Guide forAutistic Students, a long
awaited new edition with so manyupdates 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.
(01:30):
I'm sorry, folks.
My co-host Vicki Nelson, who isthe founder of College Parent
Central.
So, ladies, can we just startfirst by having you introduce
yourself and give folks a senseof who you are and why this is
your life's work.
Jane, go for it.
I'm an alphabetical order kindof gal.
Speaker 3 (01:50):
Oh, okay, and I'm saying, Laurie, go ahead and
start.
Hi everyone, I'm JaneThierfeld-Brown and I'm honored
to be here with Vicki andElizabeth today.
Thanks so much for inviting us.
My career has been indisability services for 45 years
, a really long time.
Since we were still trying toget people with physical
(02:13):
disabilities onto collegecampuses In the late 90s, I
became more interested in well,actually, in the early 90s I
became very interested incollege 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
(02:39):
with autism, which just madethat even more of a passion
project for me.
Though, Though I was, as I liketo say, I was working in
college with people on one endof the spectrum, and at home my
son is very severe at levelthree, nonverbal, very
symptomatic and alsointellectually disabled.
So it was a differentexperience than college students
(03:01):
, but it really fueled a lot ofmy work in many ways, and I sent
out a query to our disabilityservice professionals about
wondering if anyone was seeingthe same thing.
I was on campuses with collegestudents with autism.
Were they interested inpresenting at our national
conference?
And Lori was one of two orthree people who responded and
(03:27):
having the connection of notonly our disability services
careers, but also Lori, had ason with autism, a much more
mild form, and gosh.
That was now.
When is our anniversary, Lori?
It was more than 25 years ago.
Speaker 4 (03:41):
It was more than 25 years ago.
Speaker 3 (03:44):
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 Ihave stopped working.
For 23 years I was at UConn LawSchool as the Director of
(04:07):
Student Services, which includeddisability services, and I left
there a number of years ago andmoved on to Yale Child Study
where I was an assistantclinical professor.
Now I just run a group calledCollege Autism Spectrum, and I
am of a certain age, shall I say.
So I'm moving out towardsretiring, as Lori and I both are
(04:30):
looking at that.
And we have a third colleague,amy Rutherford Moody, who can't
be with us today.
She's doing a transitionworkshop for the state of
Tennessee and she is taking overa lot of the work for College
Autism Spectrum.
So that's it in a nutshell,lori.
Speaker 4 (04:49):
Hi, I am Lori Wolf.
Thank you, echoing what Janesaid, for inviting us to be part
of this.
We really feel that talking toparents is so important in this
work that any opportunity we getto go to parents we jump at.
So thank you and thank all ofyour parents.
As Jane said, we've beenworking together for 25 years.
(05:13):
I am originally trained as aneuropsychologist and my
specialty was neurodevelopmentaldisorders, what we would now
call neurodivergent disorders,autism, adhd, learning
disabilities, childhoodpsychiatric conditions and at
the time that I trained, autismwas still considered very rare
and fairly severe.
(05:34):
So when I made the transitionfrom being a clinician
researcher to being a disabilityservices professional and I was
at Boston University for 27years I noticed that there were
students who looked a lot likemy patients and research
subjects and I thought thiscan't be this.
You know, this is not what Iwas trained to recognize.
(05:57):
And the real kicker is when agentleman who's now very well
known in the autism community,steve Shore, was my very first
openly autistic graduate studentin a PhD program.
And again it kind of blew mymind because this isn't supposed
to happen.
And so when Jane put out herquery on the Professional
Listserv, I jumped at it,because I was also starting to
(06:20):
see those signs and clues in myown toddler, and so, you know,
we kind of made the full circleof clinicians Jane, you forgot
to mention that you're trainedas a counselor clinicians,
disability service professionalsand parents and sort of started
this little study group wherewe read together, worked
(06:41):
together, did a lot ofpresentations, were booed out of
some ballrooms and itculminated in a number of
publications that we're happy tobe updating now.
I'm recently retired from BostonUniversity where I served as
the director of disability andaccess services and the ADA 504
(07:01):
compliance officer.
I held some facultyappointments in rehabilitation
sciences and psychiatry and inmy newly retired life I am
co-teaching in the landmarkcollege professional
certification program, which Istrongly recommend professionals
(07:22):
who may be on this podcast lookat, which I strongly recommend
professionals who may be on thispodcast.
Look at I'm.
You know not, they didn't askme to do that plug, but it's a
wonderful certificate thatteaches professionals how to
work with students who areneurodivergent, particularly who
have issues in executivefunctioning and academic
functioning.
So that's that's who I am, andthank you again.
Speaker 2 (07:45):
You have given us, you know, given us your sort of
origin story, and it's beengoing.
Your work has gone on for along time, so can you talk about
changes that you've seen in thecollege environment since this
time?
You know, one of the thingsthat you asked me about, too,
when you were working on thebook was, you know, titles,
(08:06):
because the previous title wasgosh the Parents' Guide to
College Autism.
Yes, I get it.
Speaker 3 (08:13):
On the autism spectrum.
Yes, the students with autism,oh let's see, I have it here.
Speaker 4 (08:18):
Parents' Guide for College for Students on the
Autism Spectrum.
Speaker 2 (08:21):
Yeah, so talk about that, the puzzle piece.
Speaker 3 (08:30):
I'm sorry.
No, lori was mentioning thepuzzle piece.
So yeah, right, lori, do youwant to talk about the changes
in the environment since the?
Speaker 4 (08:36):
19th century.
Yeah, we really did think longand hard about this and we had a
lot of discussions with this,about this, with our colleagues,
with members of the autismcommunity, to just sort of take
the pulse of.
You know, becauserepresentation and what you, how
you refer to somebody, isreally important.
And you know there were changesin the professional
(08:58):
nomenclature.
We lost the word Asperger's, wereplaced it with autism
spectrum.
That's been altered morerecently to autism and then
that's evolved within thecommunity as neurodivergent and
so we wanted to honor that.
We wanted to be a little moremodern but we wanted to be
inclusive.
So we decided to use the wordneurodivergent, but this book
(09:21):
really is about autism.
So that's how we came up withNeurodivergent Students Parents
Guide for Autistic Students.
I really thought that that wasthe most encompassing and
respectful way to do it andhopefully has some legs so that
this title may last a while,unlike Asperger's, which didn't
(09:44):
last a while.
Speaker 5 (09:48):
So I'd like to ask a question too, and before I jump
in and ask that, because it hasto right with the beginning of
the book, I love the title ofyour first chapter, which is
when have you Been and when Areyou going.
And before I ask my question, Ijust want to throw out there and
I hope that parents have beenstaying with us this far at
(10:12):
least into the podcast that thisis a very specific episode
about parents and autism incollege.
But as I read your book, somuch of what I read in your book
applied to all studentseverywhere.
So I hope people will stickwith us and I know that families
(10:32):
who are getting an autisticstudent ready for college are
really hungry for thisinformation.
But it's really useful foreverybody and I think that first
chapter of where have you beenand where are you going really
kind of says it for everybody.
And you said in that chapter webelieve if everyone understands
the process of what comesbefore and what comes after, the
(10:56):
transition for college will besmoother.
And boy, that's true foreverybody.
But I'm wondering a little bitabout what the inspiration was
for that and why you are sayingthat and how looking at the
bigger picture really can make adifference in the moment.
Speaker 3 (11:17):
I'm so glad you asked that question, Vicki.
I'm sorry.
Speaker 4 (11:20):
Actually when you're done.
I want to just give a littlecolor commentary, because that
phrase was mine, and very earlyon.
Speaker 3 (11:27):
Yes, and I was going to say that Okay.
So I'll start.
I'm so glad you asked thatquestion, vicki, and thank you,
lori, for reminding me.
I didn't in my bio say I dohave a counseling background and
my doctorate's in education andpsychology.
So Lori and I complement eachother well with our backgrounds
(11:48):
and our clinical backgrounds.
So, as you mentioned that, Iremember long ago us saying when
we titled that first chapter,where have you Been and when Are
you Going?
We always said when we write thenext book, that should be the
chapter, that should be thetitle.
And I think that's true.
And I'm thinking back all theway to yesterday where I did a
(12:12):
training for a school districtwith elementary school
paraprofessionals, which I wasthrilled with the opportunity to
do because I usually work withmaybe middle school and high
school paraprofessionals,because I do a lot of transition
work and work as a transitionconsultant in the Farmington
School District here inConnecticut, and I always quote
(12:37):
our friend and colleague, peterGerhart who, when asked when
does transition start, withoutmissing a beat, he always says
in preschool.
And that's for everyone.
And I try and remind peoplethat in preschool, especially
when you look at the specialeducation preschools, you are
taught so much independence Okay, push your chair in, you can do
(12:59):
it.
You can use the bathroom byyourself.
Okay, you know how to wash yourhands.
And we encourage thatindependence all the way through
elementary school.
And somewhere along the wayparents feel like they have to
help their kids so much thatthey really push the schools and
the schools sometimes do itnaturally to do things for the
(13:22):
students that they could doindependently.
And they take away a lot ofthat independence by the time
they're through with high schooland so our kids end up coming
to college with less independentskills than they might have had
at the end of elementary school.
And it happens to a lot ofpeople because we're so
concerned about grades, we'reconcerned about failure.
(13:43):
So we have to really look atwhere have you been and where
are you going.
And when I work individuallywith families doing college
counseling, my first question iswhat's the goal?
And often that question isreally hard to answer and it's
also very different for theparents and the student.
(14:03):
And then I have to really setthe question of so who's going
to college here?
Are the parents going tocollege or is the student going
to college?
And how are we?
Who's driving this train, andwe really have to ask those
questions, and that's where theinspiration for that title comes
from, because you really haveto look at where you've been to
(14:26):
figure out where you're going.
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 oraccess services world, this is
all called universal design,meaning that things that are
taught in specific ways thatmight help students who have
(14:48):
learning differences ordifficulties or disabilities,
those teaching methods helpeveryone.
They help all students and forall the years that I was working
at Yale, when I would do thetalk to parents that were in
transition, I would usually talkwith the Dean of Admissions at
Yale.
The two of us would presenttogether and after my portion he
(15:11):
would always say we really needto go on the road together
because everybody needs to hearthis.
So I do hope people will hangin through this podcast, because
it's not just students thathave any learning differences.
Go ahead, laurie.
Speaker 4 (15:26):
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 thevery beginning.
I think this was one of the veryfirst slides that I wrote when
we first started to do thisbecause, remember, jane and I
were in the thick of goingthrough this with our own kids
and we felt that elucidatingthat for disability services
(15:47):
professionals was important, sothat they would understand the
steps that parents are goingthrough, in the hopes that that
would help them understand whyparents might be, you know,
helicopters I don't think wewere using that phrase yet why
parents might approach thecollege transition the way that
we do, and so to give them alittle bit of a window into what
(16:07):
the parents are experiencingand I think it was where have
they been and where are theygoing.
And then we switched it to wherehave you been and where are you
going, as we began to realizehow important it was to talk to
parents and to really say thisis a process and, gee, remember
Jane, it goes so far back that Ithink step one was grieving yes
(16:28):
, which we no longer talk aboutin the parents of children with
disabilities world that that issuch an old concept of you.
Know you have to grieve beforeyou can move forward.
We don't look at that anymore.
We look at you have to honorand then you can move forward.
Speaker 5 (16:48):
So you know it is a really old mantra that you know
it should be the title of ournext book.
We'll wait for that one to come.
Wait a long time, if you guysare retiring.
We're retiring so that they canspend more time writing.
Well, I want to follow that upbecause I have another question,
and I think it's very muchrelated to what you're talking
about, and that is you use theterm in the book about parents
(17:12):
when students are younger,parents being the CEO.
Students need to become theirown CEO, and I'd like you to
kind of help us understand whatyou mean by that.
But also that you talk aboutfor parents to relinquish that
(17:36):
role and to give it up to yourstudent can be really scary for
all parents as their students goaway, 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 talka little bit about the CEO
(17:57):
concept, but then also whetheryou have any success stories,
that sort of counteract thatscariness.
That's a lot, but go where youwant with that.
Speaker 4 (18:09):
That's okay.
Well, let me start and thenI'll pass it on to Jane.
And this is what we do.
We've been doing this togetherfor so long.
We finish each other'ssentences and thoughts.
You know parents of youngsterswith disabilities have to work
really hard to make that happen.
That.
You know.
The laws as they're written arebeautiful laws and they, you
(18:29):
know, promise a lot of things.
But in order to access thosethings, parents have to work
hard and really have to drivethat bus, make sure that the
meetings are held, make surethat the documents are filed,
make sure that the services areprovided and followed up on, and
really the youngster takes abackseat to all of this.
(18:50):
So, you know, we always referto helicopter parents, but
parents of students withdisabilities are Blackhawk
parents and really you know verymuch in the life of their
students' education.
When they get to college, thelaws shift in a major way so
that it is now the student'sresponsibility to be in the
(19:10):
driver's seat.
And that's really terrifyingfor someone who has been in
charge of everything fromdoctor's appointments to
physical therapy, tooccupational therapy, to making
sure that the teachers are doingwhat they're supposed to do
when the students are eating athome, to actually be told by
policy, practice and statutethat they have to take a back
(19:31):
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 beinvolved in this?
So we really want that processto happen in high school so that
everybody is accustomed towhat's going to happen and why
is it going to happen and how topartner with their student and
(19:52):
their college disability officeso that it goes smoothly.
And you know people stay intheir lanes.
So you know it is terrifyingbecause you know many of our
students are vulnerable.
They haven't lived away fromhome, they haven't taken care of
themselves, they haven't oftenbeen given the opportunity to do
that.
So it is very scary and I cansay firsthand that you know I
(20:15):
still wait for the 3 am phonecalls and when you know when
Facebook, you know, or FaceTimerings 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 youwant a good outcome, which is a
happy, independent, successfulyoung adult, this is a necessary
(20:36):
part of it.
I have a great success story.
Jane, you want to talk firstbefore I?
Speaker 3 (20:41):
No, no, no.
But before you tell yourstudent's success story, would
you please tell your own son'ssuccess story.
Could you say the airport-, theairport story.
Yeah, would you please tellthat, because that's a perfect
example of all this
Speaker 4 (20:56):
Yeah, I have twins.
They're now Gasp, if you canbelieve it 27.
And we had them traveling a lotwhen they were independently,
when they were younger.
We said you know, go to safeplaces, but you know, be
travelers.
So one of them I don't evenremember which one, and they're
both neurodivergent was in anairport and texted me I'm going
(21:17):
to miss my plane.
And my first thought asBlackhawk mom was I'm going to
call the airline, I'm going tocall the pilot, I'm going to say
stop the plane, he's coming,he's going to get there.
And then I, I my trainingkicked in, my, my lecturing, you
know, to other people kicked in, and I responded back to him
run faster.
And he ran faster.
(21:39):
I think he made the flight.
I don't remember it was, it wasa while ago.
But you know, that kind ofshift from what comes
automatically, as you know, mamabear, to what's in the best
interest of my young adult howare they going to learn coping
strategies?
And that I'm not going to bethere to fix every road bump
(22:00):
that they come across.
Speaker 2 (22:02):
And what I think is important about that story too
is, you know, and my motheralways raised me with this, it's
not really a game, but likewhat's the worst thing can
happen game, which is you missyour flight, you get on the next
flight, and those are thingsthat you can tolerate and that
they'll be okay.
Yeah.
Speaker 4 (22:19):
But you don't know, you can tolerate it until you've
had that experience.
Speaker 3 (22:22):
Exactly, jane, jane.
Well, how many people are notallowed to have that experience?
Because before they are allowedto 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'reworried their kid might not know
(22:45):
how to do it.
I'm going back for a minute tothe CEO.
That's what we explained, thatfor all those years you're
advocate and CEO of thatstudent's education and suddenly
the student is becomingadvocate and CEO of their life.
And have you given them anytraining?
And would we ever put someonein a CEO position without any
(23:10):
training?
And yet we feel like it's okayto take over the making the
appointments and refilling themeds 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 thoselearning opportunities and we
still expect the student to beable to launch.
(23:30):
So if we don't start handingsome of that back slowly over
time, especially with ourstudents with difficulties, it
takes time and we have to do onething at a time.
So, parents, if you'relistening and you have juniors
or seniors and you're saying, ohmy gosh, I haven't done this
yet.
There's time, do one thing amonth.
If you have to do one thing aweek, that's kind of fast in my
(23:52):
opinion.
If you have a few years, startit slowly and do it reasonably.
But you have to start pullingback on what we do for and teach
to, because when the parentsare responding to emails in
college, we're going to sayplease have your student contact
me, thank you very much, andthat's it.
(24:14):
You know we're not going tocommunicate with the parents.
Rather than the student, laurie, go ahead.
You were going to tell a asuccess story and I have lots of
them.
Speaker 4 (24:23):
But I think I'd also like to say that we very often
open in our presentations toparents with how many of you
woke your son or daughter upthis morning.
Speaker 3 (24:39):
Usually three quarters of the people raise
their hands.
Speaker 4 (24:42):
Yeah, and we say stop and it's followed by well,
they'll miss class.
To your next question about youknow how does that impact
grades, so put that one on holdfor a minute.
One of my favorite successstories was a youngster who was
in our business school at theinsistence of their parent who
wanted them to take over thefamily company.
(25:04):
And the student was struggling,was not clicking, was not doing
well, was avoiding class, wasemotionally a wreck, and we were
able to sit down with thestudent and their parent and
over a number of sessions theparent relinquished that
insistence that they follow intheir footsteps.
Let the student choose theirown major, which was
(25:25):
communication and marketing.
Vicky, the student did reallywell I still get emails from
them that just finished agraduate program in Italy and
you know, really was able tobreak free from that.
I'm not doing where my passionsare, and not only that, but I'm
in such a bad match that it'staking a toll on my health and
(25:46):
mental health to a position ofbeing able to live abroad and be
successful abroad.
So you know it really requiredmassaging the parents'
perspective so that they wereable to see this is not right
for my student and you know Ineed to let them make decisions
here.
Speaker 5 (26:05):
It would strike me that it's hard, for as a parent
it's hard to see really far downthe road and believe you can
accomplish it, and for studentsas well say that can happen, and
(26:30):
then those small steps add upto the goal down.
So sometimes looking moreimmediate and what can we do
today or next week or next monthmight lead us there.
Speaker 3 (26:39):
It's so interesting that you say that, vicki,
because I talked about my sonand I have three kids, three
adult kids.
One of my daughters also hasfragile X syndrome, but much
more mild than my son, becauseshe has the other X genetically
and she has ADD and somelearning disabilities and she
(27:01):
definitely struggled throughcollege and didn't want to
access services throughdisability services.
She was tired of being that kid.
She just wanted to be likeeverybody else.
She really struggled through it.
Now come further down the linewhere she is 12 or 13 years out
(27:24):
of college, having graduated,she wrote the foreword to our
book.
Having graduated, she wrote theforeword to our book and one of
the things that she rememberedwhich I remember saying to her,
but I didn't think she everheard and I actually didn't know
it till I read the draft ofwhat she wrote as a foreword.
But I was always saying to herbe where your feet are.
(27:45):
She would get so ahead ofherself and I was always trying
to keep her in the moment andwhat Elizabeth was talking about
what can we do now?
What's one thing we can do now?
And I was trying to get her tothink 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 todo.
Can you get the assignment done?
(28:08):
I'm going to do you know.
Can you get the assignment done?
Can you you know?
Is there somebody who can helpyou?
Is there those kinds of things?
And I think we tend to meet thelevel of our kids catastrophe
and we catastrophize.
And again, that's one of thosethings that it might be more
(28:28):
intense with someone who'sneurodivergent, but it goes for
all students and I think that'sreally true.
Speaker 2 (28:36):
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-DrivenChild, which which is one of my
favorites.
So what Jane is talking aboutis the consultant model of
parenting, right, asking thequestions and getting your
student to think about you knowwhat happens next and what
(28:59):
supports they can get.
And just as a reminder, take apause, we are here with Jane
Thierfield Brown and Lori Wolfe,who are the authors of
Neurodiversity and College AParent's Guide for Autistic
Students.
So let's talk a little bitabout all of these wonderful
supportive parents who want todo everything they can for
students and who sometimesadvocate for accommodations and
(29:25):
services and supports at thehigh school level to sort of
maximize their students' successright and get them the highest
possible grades and, you know,kind of ease their anxiety about
certain things.
And then what's happening atthe college level and what those
supports look like and what maynot be present.
And you know this, and so Irealized I haven't even
(29:48):
introduced myself today.
I am Elizabeth Hamlet and I am,and intensity of supports that
your students receive in highschool may not be matched by
(30:12):
what's available at college.
So, jane, do you want to kickus off starting about IDEA, the
ADA in Section 504?
And you know, the difference isnot just in the academic
supports but, you know,especially for the autism
community, socials andbehavioral expectations.
There's a lot going on here.
Speaker 3 (30:32):
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.
Yeah, you should read the book.
It's interesting now because Icome at it from a different
perspective, since I'm workingin high school as the transition
person.
For some parents.
They are so thankful to hear,while they still have time, what
(30:56):
they need to do before the nextstep, because for a lot of
people the student that we'retalking about is their oldest,
so they haven't been throughthis college transition with it
and having them think back totheir college transition helps a
little.
But the world has changed,college has changed.
They've changed, so for someparents it's welcome information
(31:19):
.
Other parents meet with me onceand then ban me from ever
talking to their student again,and there's several parents who
have done that and not allowedme in any other meetings and
said number one, I don't want tohear any of this.
She doesn't know what she'stalking about and I think that
(31:44):
that's a defense mechanism and Iunderstand that and I just say
that's fine and kind of feed theinformation through other
people who will be meeting withthe parent.
(32:14):
Entitlement based on studentsuccess, where once a student
graduates, they move to Section504 of the Rehab Act and the ADA
, the Americans withDisabilities Act and the
Amendments Acts, and that is nota federal law.
Number one, it's civil rightsstatute of eligibility you have
to be otherwise qualified toreceive accommodations.
And number two, it's an equalaccess model.
(32:35):
Our jobs as disability serviceprofessionals are to look at the
barriers students might befacing and then provide
reasonable accommodations basedon level of functional
impairment in a major lifeactivity.
These are totally differentlaws and people are expecting
(32:55):
the special education servicesto continue through college.
Now, as a parent who wasadvocating very hard, especially
for both my kids who neededservices, I knew I had to start
scaling back and that mydaughter had to take over to
(33:17):
prep for college.
And what I encourage parents todo 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 thatlarge transition After ninth
grade.
Once you've got a good, solidfooting, you need to start
(33:37):
scaling back to a morereasonable level of
accommodations in high school.
Because I look at some of theaccommodations the list that
some students have on their IEPis longer than what my severely
disabled son, who was not goingto college, have.
Wow, you're expecting yourstudent to be considered
(33:58):
otherwise qualified.
It's difficult to look at thatlevel of accommodation and think
they're ever going to becapable of college.
So that's the term I usuallyuse with families and say are
you considering your studentcollege capable?
Oh yes, of course they're goingto college.
Well then we need to look atwhether these are reasonable and
(34:20):
really I have to ask thestudents sometimes let's go one
by one Do you use theseaccommodations that are on your
IEP?
And many times they're not beingused.
Families and I get this becauseI was the same you're afraid to
take them off because you'reafraid you might get them back.
But if they're not being used,you often have to really start
(34:42):
pulling back in preparation.
Sometimes I don't even say foradulthood, I'm sorry for college
, it's for adulthood, becausereally the goal is not just a
college degree, the goal is asuccessful adult.
Earlier this morning I thinkthat one thing that is important
(35:03):
to mention is that particularlyIDEA is a federal law.
Speaker 4 (35:19):
It is administered at the state and school district
level in public schools.
So this is something thataccrues to public schools at the
moment.
We don't know what that mightlook like in the future.
So much is you know up in theair and out in social media and
in the news cycles.
We don't know, but IDEA is apublic school statute.
(35:43):
Ada, americans withDisabilities Act and Section 504
are federal statutes and theyare regulated and overseen by
federal agencies.
Again, we don't know whatthat's going to look like, so a
lot of what we say today mightbe different tomorrow.
I urge parents to look at theirstates, to look at what things
(36:06):
look like, what may or may notbe on the table, and to educate
yourself.
If this is part of youryoungster's journey, it's
important to know.
You know where this is comingfrom and understanding that you
know, with IDEA, the funds areadministered at the state and
district level.
The federal government doesn'tput a whole lot of money into
(36:27):
the special ed education pool.
So you know, look at your state, look at your statutes, look at
your district and figure out isthis going to impact your
family.
You know, regardless of whichchanges we wind up seeing.
Speaker 2 (36:42):
And, importantly, folks, idea only applies at the
high school level.
It doesn't apply to colleges.
So one of the things thatpeople are always asking, and to
Jane's point about these longlists of accommodations and IEPs
, I have seen parents adviseeach other oh, senior year, you
got to make sure you pile allthese accommodations in so that
(37:03):
when your student goes tocollege, hands in the IEP, they
say, okay, we're going to do allthese things.
But IEPs are not legally validdocuments that colleges have to
follow.
As soon as your student eithergraduates from high school or
exits out because they've agedout of the system, idea no
longer applies.
And so, therefore, while acollege might ask to see the IEP
(37:26):
as a form of documentation ofdisability meaning you know
paperwork that shows the collegethat they had a disability and
what services they previouslyreceived Colleges are not bound
by anything that's written intoan IEP.
And if your student is on a 504plan under Section 504 of the
Rehabilitation Act of 1973, thatis federal law, as Lori pointed
(37:49):
out, and most of the guidancefor colleges comes out of
Section 504, actually not theADA, because 504 was written
first, but colleges are undersubpart E and K-12 schools are
under subpart D.
So, as Jane already pointed out, we have very different
mandates.
Our mandate is to provideaccess, but not work at success
(38:13):
the way IDEA requires K-12schools.
So these are important things.
Don't expect that your studentjust needs to secure this plan
and you guys, you know, workwith somebody to put lots of
accommodations in it, and thenwe provide those accommodations
and Jane so just I really itcircles back to what we were
talking about a few you knowmoments ago that this is part of
(38:35):
understanding the process.
Speaker 4 (38:36):
Yeah, so that the family doesn't berate the
disability services officer whois doing their job and the
disability service officerdoesn't go back and say, oh,
where did these parents comefrom?
So you know, really everybodyunderstands the process where
people have been and what lanethey need to stay in.
Speaker 2 (38:53):
And Lori, when I interviewed you two for my book,
you said something that reallystuck with me about the
importance of families learningthe realities of the college
environment, which is you don'twant us, as disability services
professionals, to have to haveour first conversation with
students, and sometimes withtheir parents present.
You know that the first thingthat they hear from us is no,
(39:15):
and that will be unavoidable incertain circumstances, but that
is why understanding the changesis so important, so that
families know what to ask forand know what we'll, you know,
to expect from us.
So, speaking of which, you knowwe talked a little bit about
academics and grades, but, youknow, for the autism community,
(39:37):
are there other things that youthink, specifically, family
should be aware of as we movefrom that K-12 environment to
college?
Speaker 3 (39:44):
One of the things we haven't had time to talk about,
but was brought up right at thebeginning, is that, especially
for neurodivergent studentsoften they have not had the same
social opportunities- thatneurotypical students have had,
and so going to college affordsa lot more independence, but it
also puts students in somesocial situations that they may
(40:07):
or may not be prepared for.
Students in some socialsituations that they may or may
not be prepared for, I don'tmean just social skills classes,
because most of our collegestudents will say I could teach
the social skills classes.
I've had so much social skillstraining.
It's putting it into practicethat I'm not good at, and so
it's really more important thatwe find a way to have students
(40:29):
have those social opportunities,whether you have the option to
bring your kids to events thatare tailored around
neurodivergent individuals orsomething where students can
interact with other peopleno-transcript.
(41:09):
Sometimes you're on a groupproject and it's rare or almost
non-existent in college to getgroup work just all accommodated
and do it on your own, which Isee much in the high schools.
So those kinds of things arereally important and just having
some social experiences arereally important.
(41:31):
And just having some socialexperiences.
There aren't those safeguardsat college like there might be
in high school with anindividual or adult support or
paraprofessionals.
That doesn't happen in college,it's not paid for and that's
considered personal service fromthe ADA.
So those social opportunitiesare important because students
are going to be independent andneed to be able to know how to
(41:54):
handle themselves.
Laurie, do you want to add tothe social piece?
Speaker 4 (41:59):
Yeah, I do, because students spend a larger
proportion of their time in whatwe call in higher education,
because we have lots of termsfor 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 thatare generally set up by a
(42:21):
college or university.
But then there's also what goeson in a residence hall and you
know how do you structure yourtime.
How do you deal with roommateswho are partying?
How do students who've beenperhaps sheltered by you know
that Blackhawk parent deal with?
You know with sexuality, withdating with you know with sexual
violence, with health issuesaround sex.
(42:43):
So you know, all of thosethings are wrapped into
something that parents don'toften think about.
They don't think that throughas much as they think through
the academic piece and sort ofhow do I prepare my student to,
you know, manage their free time?
How do I help them make goodchoices about the activities and
the people that they're goingto be interacting with?
(43:03):
And that is actually harderthan the academic piece.
It's harder because we don'thave unless we're also an
autistic parent the same frameof reference that you know.
I thought I knew what myyoungsters would encounter in
college, based on my ownexperiences and my profession,
but I had no clue until they gotthere.
(43:25):
And you know they shared orthey didn't share what their
experiences were.
So it really is.
I think the scarier piece ofsending a neurodivergent
youngster off to college is I nolonger have control.
I no longer know who theirfriends are and I don't know
what they're doing.
And why would you set yourchild up for that without having
frank conversations as a familyabout this is what college is
(43:50):
all about.
You know, here's how you find amentor.
Here's how you find, you know,a student who can help guide you
through it, because they youknow parents if you haven't
heard this before, hear it now.
They're not going to listen toyou when you tell them about how
to manage their social life.
Speaker 2 (44:05):
Well put Laurie, I mean that's a universal.
I don't think that's whatyou're talking about.
Speaker 3 (44:13):
I do want to add, just to make sure as I know
we're going over time and wecould do an hour on each of
these topics but we won't thereare specific programs that offer
some of the assistance thatwe're talking about today.
There's about 100 across thecountry at different colleges
and universities, and we have alist of those with links and
(44:36):
contact on our website,collegeautismspectrumcom.
That give you an idea of wherethese programs are and what they
offer.
But for parents who arepanicked hearing a lot of the
information we're talking abouttoday, you may want to think
about one of the more specificprograms for autistic students,
(44:57):
and those will help support yourstudent if they need it, and
you can taper off those servicestoo, once your student has
adjusted to college and may notneed the services anymore.
Speaker 5 (45:10):
So you're right, we are running a little bit over
time, but there's so many thingswe want to ask you about,
there's so many things we wantto.
We may have to say, you know,this is just part one and there
will be a part two, but giveneverything that that we've
talked about, one of myquestions and again I'm coming
(45:32):
to this world from outside thethree of you live in this world.
I don't but absolutely agreewith everything you're saying
about students need to be theirown CEO.
They need to drive the bus.
You know all students do.
Is there?
(45:53):
Given all of that, is there anyplace for parents at the
college level in terms ofworking with disability services
?
We know, you know, disabilityservices want to meet with the
student, want to work with thestudent.
Parents need to step back.
Is there any reasonable,productive way for parents to be
involved at all?
Speaker 4 (46:16):
Absolutely.
I'm so glad you asked that,that you know we've been
drilling parents for ages on howto create a partnership between
disability services, the campus, the student and sometimes the
support services from home, tounderstand that we all share a
common goal, which is that thestudent be a successful,
(46:37):
independent, gainfully employedyoung person.
That they don't live in anapartment, you know, over the
garage, if you know if there'sany way to have them, you know,
successful and independentoutside of that.
So you know we really, when weare all on the same page, it
becomes easier to work withparents and to remind parents
(46:59):
when they, you know, step out oflane.
You know how is this going tofurther our mutual goal and you
know our goal is to collectivelysupport your student but not to
do for them what they need tobe doing for themselves.
So communication with a parentis fine, encouraging parents to
contact Disability Services orDean of Students if they notice
(47:22):
something that is different orawry or concerned that we're not
cutting off you know, contactand conversation, or awry or
concerned that we're not cuttingoff.
You know, contact andconversation.
We're saying that this is thegoal and this is how we are
going to achieve it.
But certainly, if you have aconcern, bring it to my
attention.
I can't necessarily include youin the resolution of that
concern, but I want to hear so,letting parents know, because
(47:45):
really, what they're asking whenparents 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 ofthem the way I do?
Are you going to make sure theyget up, they take their meds,
they have friends, they go on adate and so you know, resonating
with that and saying I getwhere you're coming from and
that's really and the answer isno, I'm not.
(48:08):
I understand why you're askingthat and I can facilitate your
student making those thingshappen in their life.
And you know that bond, thatrelationship with the parent,
can be very productive and veryuseful.
As my business into marketingstudent discovered that we
weren't adversaries, his dad andI.
We understood that we're goingto work together on this.
Speaker 3 (48:33):
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 kickingparents to the curb, it's more a
matter of you know if somebodyis going to write and say I have
some real concerns.
He or she has lost 15 poundssince they left home.
(48:55):
Their mental health doesn'tseem good.
They were here for a weekendand wouldn't talk those kinds of
things.
Of course the college wouldwant to know so that we can
provide some appropriateresources, so that we can
provide some appropriateresources.
But the parent needs to knowthat we have to say to the
student your parent's reallyconcerned about you and reached
out to me.
(49:15):
That makes me concerned.
Let's get you to the healthservices, something like that.
Let's get you to a counselingappointment.
We can't be thebehind-the-scenes person, even
if the student doesn't want tolisten to the parent.
If the parent's going to reachout and say, gee, my kid wasn't
(49:36):
feeling good, can you just checkon them today?
No, that's not something.
There's time to do.
It's important for parents tounderstand the differences in
caseloads.
The majority of parents aresending their kids to schools
where the special ed casemanager or teacher has a
caseload around 20 to 25.
Some school districts it's aslow as 15.
(49:57):
The average disability serviceprovider in this country works
with between 150 and 700students.
One disability service providercalled me last week to talk
about how to work with severalstudents that they were working
with who were neurodivergent,and I asked what their caseload
(50:19):
was and they said 807.
Yeah, that's a real high.
I don't think parents understandthe limitations we have.
Let's say you're working.
Let's scale way back from thatand say 400 students.
If you have 400 students andthey're each taking four classes
, oh wow, 1,600 courses for thepeople you're responsible for.
(50:45):
Each of those probably have twoor three exams per semester, at
least I'm trying to do the mathquickly that's 48.
I got it.
Speaker 2 (50:56):
It's a lot 4,800 exams.
Speaker 3 (51:00):
So when a parent calls and says my student was so
upset, can you make sure theydidn't flunk their organic
chemistry tests?
Mm-hmm.
I think that's where parentsthink we're more along the line
of that special ed case managerand it's a totally different
system.
We have so many more students.
(51:21):
That's why they need to tellthe student, needs to tell us if
they're struggling.
There's no way we would knowand the parents seem to blame us
if there's a problem where wedon't know there's a problem
unless the student tells us, theparent calling us and saying my
kid is flunking three of theirclasses.
(51:43):
Really the response has to becan you see if they'll make an
appointment to come see me?
And the hook in there is canthey make the appointment?
Where a lot of people are likethe parent will say I'm getting
online now to make anappointment for the student.
And if we're at that level, howare we going to get the student
(52:08):
to engage?
And we try so we're not kickingthe parent to the curb.
They need to understand this isdifferent, just like it's going
to be different when they go towork.
Would the parent call the bossto say can you check that he's
okay today?
You know that's sometimes whenyou think about it at that level
, because really we're thebridge between high school and
(52:30):
employment.
We're the bridge between highschool and employment.
Speaker 5 (52:34):
I think this conversation about the
partnership, while we'd love tokeep going, is really a good
place.
That maybe where we have to endfor today anyway and really
(52:55):
leaving parents with that senseof the partnership that has to
happen.
One of the ways that we'veoften described it in workshops
that I do is, if you think of athree-legged stool, that you've
got the three legs, you've gotthe college, you've got the
student, you've got the familyand you need all three to hold
the stool up, and if one islonger than the other it's kind
(53:17):
of cockeyed.
So I think essentially that'swhat you're saying and then
keeping that goal in mind.
So that's.
So I want to just ask a lastthought.
Do you have a last thought?
And then will you share with usagain the book?
And if parents want to knowmore, is there a way that they
(53:39):
can reach out to you?
Speaker 3 (53:41):
Laurie, please you start with last thoughts.
Speaker 4 (53:44):
Well, you know my last thoughts.
And again, it's working withthousands and thousands of
students.
I actually calculated before Ileft BU how many students I'd
worked with and it was somethingin the order of 25,000.
Ridiculous amount.
And my own kids is that youknow it's a beautiful thing when
it happens and when it goesright and even when it's going
(54:06):
wrong it's still a beautifulthing.
And you know to celebrate yourstudents' successes, to be there
for you know support whenthey're not meeting with success
, but understanding that youknow this is a marathon, not a
sprint.
And if there's a hiccup alongthe way, if there's a rough
(54:27):
patch, if there's a roadblock,then you know that's temporary
and you know in most cases, youknow those things have a way of
working out.
Everybody works hard.
It's not magic but you know, inthe long run, for the vast
majority of students it is ajoyful and successful
(54:49):
progression.
And the progression piece isimportant, that you know,
particularly with neurodivergentyoungsters.
These are students who haveneurodevelopmental conditions
that you know have unfolded overtime and you know the successes
have unfolded over time.
So you know to just take thatperspective and not panic.
(55:10):
It really is my take home forparents is you know, don't panic
.
You know, in the vast majorityof cases is the outcome that
everyone desires.
Speaker 5 (55:25):
Don't panic, but read your book.
Speaker 2 (55:27):
Yes, thank you Read the book so you don't panic.
Speaker 3 (55:32):
I'll say as a closing thought, very briefly, that
enjoy and accept your kids forwhoever they are.
And if they're going to college,wow, good for you, that's great
.
And if they're not, good foryou for accepting that, that's
great.
(55:53):
We've said this for 25 years weneed electricians, we need
plumbers, we need contractors,we need carpenters.
If you're lucky enough to havea young person who wants to
explore a trade, oh my gosh,let's encourage that.
That's just so important andalways will be so.
(56:16):
I think there's some things thatwe need to think about and be
accepting of and just reallyenjoy our kids for who they are
and accept who they are, and Iknow that's not always easy.
So I'll say that that's aclosing thought for now, but
there's an awful lot more to besaid and thought about.
So you can reach Lori and Ithrough collegeautismspectrumcom
(56:41):
.
I know it's a lot to spell, butcollegeautismspectrumcom and
our book Neurodiversity inCollege is being published by
Future Horizons.
It's not yet on their websitefor pre-order, but it is on
Amazon.
So if you go to Amazon and putin the title or either of Lori's
(57:03):
and my names, it will come upon Amazon for pre-order and I
believe the publication date isMay 5th.
And we so appreciate you havingus with you today and thank you
for the opportunity and parents.
We appreciate all that you do.
We know it's not easy and Iguess my last word would be as
(57:25):
much as you can, find support,find other people that are in
your similar situation, likeLori and I had years ago, and
that can be the biggest help,not only to you but to your
student that you have supporthelps your student.
Speaker 5 (57:45):
Perfect note to end it on.
Thank you so much for givingyour time and sharing everything
.
I hope everyone will head outand pre-order the book, and
thank you to everyone who hasstayed with this conversation to
the end, because it's soimportant.
Thank you to everybody.
Speaker 2 (58:07):
Thanks, ladies.
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