Autism and Higher Education: Autistic Culture, Pedagogy, Autistic Student Voices

Autism and Higher Education: Autistic Culture, Pedagogy, Autistic Student Voices


Jessica: Hi everybody and welcome.
I’m Jessica Murray, I’m the Managing Editor for Stairway to STEM.
After more than a year in development we launched STS August 2018. And so we
support autistic students as they transition from high school
to college particularly in STEM fields. So how do we do this and what are some
some of our guiding principles? For students to achieve STEM success we have
to address the challenges that the autistic population and their advocates
indicate are the most pressing. So our research and outreach tell us that
things like time management, dealing with sensory issues, and even say interacting
with professors and other students all contribute and play a role in STEM
success. So while we have resources about how to prepare for your first biology
class in college we also have resources dedicated to skills that all students
need for productive and healthy college experience. There’s a saying in autistic
communities nothing about us without us and the bulk of our materials come from
autistic contributors and this includes students, parents, and educators. Those who
aren’t autistic are longtime advocates for autistic communities or have
personal relationships as well. Our resources are our contributors, four
of whom have joined me here today. I’m going to introduce you to them in a
moment but I wanted to let you know we use a collaborative approach where
Content Creators are paired with Editorial Board Members and together
they collaborate on the resources that address the challenges and concerns of
autistic students. We can create a more diverse and inclusive student body
through fostering acceptance and also highlighting role models for autistic
students who benefit from hearing and seeing that others have been there and
succeeded before them. Finally we believe in interdependence for artistic students
and their families but more broadly for autistic students and their communities.
We have materials for parents and educators specific to the challenges of
their autistic students but often as in the case of say Universal Design for
Learning principles these resources and materials are beneficial to all students.
Since mid-august of this year we have produced over more than 65 blogs,
interviews, videos, and other resources on STS that instill confidence and support
the potential of all autistic students. So I’m going to introduce you to our
contributors but I also wanted to invite you at any time we’re going to take
questions at the end but please feel free to post questions on our Facebook
or to Tweet questions at us as well. So first is Elinore Alms, hi Elinore. She’s a
registered behavior tech in Fresno California. She works part-time as an
in-home positive behavior supports provider and she’s a biology major at
Fresno City College. In her spare time she watches anime and she cares for
her many pets. Justin Robin… Elinore: Hi Jessica: Oh thanks Elinore I’m
sorry [laughter] thank you. And Justin Robbins who’s here with me he’s a recent graduate of
Tufts University who double majored in biology and history in addition to being
an advocate for other autistic people he enjoys board games, great world building,
and truly terrible puns. [Laughter] Hi Justin. Justin: Yup. [Laughter] Jessica: Next is Sara Sanders Gardner, hi Sarah. Sara: Hi everyone. Jessica: She’s a autistic professional living in Redmond Washington near Seattle she’s
the designer and program director of Bellevue College’s autism spectrum
Navigators program which is now in its eighth year and serving more than 200
students. She also consults with Microsoft’s U.S.
Autism Inclusive Hiring Program and she leads training sessions with prospective
managers and team peers of individuals hired through the program. They discuss
areas such as social justice, autism as a culture and a disability, and
communication styles. And then lastly Susan Woods,
hi Susan. Susan: Hi. Jessica: She’s a recently retired Associate… sorry she recently retired
as Associate Dean of student support services at Middlesex Community College
after 27 years. She managed the school’s Disability Support Services supporting
more than a thousand students with documented disabilities as well as
alternative and grant funded programs. She has regularly provided training and
workshops to faculty and staff on creating welcoming and inclusive
environments and also on UDL. Now she focuses on professional development and
training for high school personnel as well as families to help support the
successful transition to college for students with disabilities. So thank you
everybody Justin and everybody for joining us. I’m gonna turn this over now
to our contributors and we’ll hear first from Sara who’s gonna talk a little bit
about autism 101, Susan will talk about some issues and ideas about pedagogy,
Justin and Elinore will then talk about college experiences as well. So thank you
and Sara I’ll turn it over to you. Sara: Thank you so much Jessica. To have truly
productive interactions between autistic and neurotypical people it’s important
to work towards understanding instead of attempting to manage or fit autistic
people into culturally expected communication and behavioral patterns.
Understanding the true disabling features of autism while thinking about
autism as a cultural difference will support these efforts. Many autistic and
otherwise disabled individuals prefer identity first language which
incorporates disability as part of their identity. So much as we might refer to a
person as tall, thoughtful, or kind, so too do we refer to them as an autistic
person placing their autism as part of their identity. This is a matter of
personal choice and the best thing to do is to ask the person what they prefer,
person first or identity first language if you need to discuss their
disability. I’m autistic myself and I prefer identity first language. Autistic
culture has a history dating back to the 1990s and has developed its own customs
traditions and approaches to expression and social interaction. Autistic culture is created for and by autistic people and is built
around the ways of speaking, thinking, and acting that come naturally to us. It’s been studied by cultural anthropologists and continues to grow and evolve. You can
learn more at the Autistic Self Advocacy Network at www.autisticadvocacy.org. When
you’re thinking about communication styles that are direct and indirect
communicators, concrete and abstract thinkers, and people who lead with logic
or people who lead with emotion. Think Spock versus Kirk. And a range of
communication styles in between. With exceptions of course, autistic people
tend to lead towards direct, concrete, and logical. Also many of us don’t recognize
nonverbal communication or implied meanings in certain situations. This can
leave us confused or misinterpreting. This is a two-way street though because
neurotypical people frequently misinterpret our meaning and are
confused or even feel insulted by our more direct communication or our tone of
voice. The best cure for this is advocacy on both sides. Ask for clarification. If
we seem upset or angry because of our tone or what we’re saying, ask us. If you
sense that someone autistic or not is confused by abstract or implied
communication try adding a sentence or two that’s more direct and see if that’s
helpful. My most useful phrase is, “could you please say that again
another way?” There are a lot of myths around autism and one of the biggest
myths is that autism is a purely social communication disorder and that with
proper social skills, instruction, or mentoring students can fit in. If it
were that simple then education and employment rates would be much higher.
What’s true is that autism can affect a person across many areas. Autistic people
can have many co-occurring neurological conditions that affect our daily
well-being. The most debilitating of these is likely sensory processing
disorder but there are many more. The Autism 101 article on Stairway to STEM
expands on this and if you read the blogs of autistic authors you will learn
quite a bit about how autism actually affects us. Another myth is that autism
is over diagnosed. If anything the reverse is true particularly in certain
populations including adults, women, and marginalized populations. Bellevue
College’s Autism Spectrum Navigators Program recently moved
out from under the Disability Center and under the Center for Career Connections
in part so that we can include those who for a myriad of reasons could not get a
formal autism diagnosis and still identified as autistic. There are other
myths around autism including that we’re unfeeling, we lack theory of mind, we’re
all intellectually disabled or geniuses or savants, and that we’re violent. None
of these are true and they are all damaging to the autistic community. And
much as racism is part of the daily life for people of color, ableism is part of
the daily life for disabled people including autistic people. This includes
internalized ableism or feeling as if we should be doing better at fitting in, not
needing accommodations or support, not being disabled. Ableism can take the form
of microaggressions as in complements such as, “you don’t seem autistic to me”
or “you must be high-functioning” or even “you’re so inspiring” or “so articulate.”
Ableism is also experienced as over helping or even passing a student who hasn’t met
the outcomes for a course. The good news is that you can make a big difference by
learning about autism cultural responsiveness. You can learn even more
by reading the posts on Stairway to STEM and elsewhere written by autistic
advocates and activists. Jessica: Terrific, thank you Sara. And now we’ll hear a little bit from
Susan. Susan: Thank You Jessica, delighted to be here. So I’ve been asked to talk a bit
about pedagogy and I’m going to do so in the context of Universal Design for
Instruction or Learning as Jessica mentioned. And my view on this that I’d
like to share is that Universal Design is essentially good teaching and it’s
approaches that are going to be beneficial for the few but also
beneficial for all. I view it as part of an institution or university or college’s
diversity mission. So there are some approaches that are effective and I’m
going to talk a little bit about strategies as well as ways that faculty
and institutions can support autistic students. So one of the ways some of the
strategies that are effective would be things like using scaffolding techniques,
reviewing content before moving forward, linking concepts to previously learn
material, cuing to allow for adequate processing,
modeling good note-taking and organizational skills, and presenting
information in organized fashion, providing things like guided notes and
posting notes online. I also recommend reinforcing written
material verbally and reinforcing verbal material in writing. The other
recommendation that faculty often embrace is bringing closure to each session
by summing up important points and concepts as well as using multiple
measures for students to demonstrate competency. This can be done through a
faculty syllabus and their rubric of standards for demonstrating competency,
things like e-portfolios, student presentations, video or web-based reports,
and multiple format tests. Ways that faculty and institutions can support
students on the autism spectrum in their institutions are becoming aware of
accommodations, helping students in their self-awareness, self confidence, and
metacognition, learning how you learn knowing how you know, practicing
communication, email, and verbal communication, and practicing ways to
participate as part of a group. So I often encourage faculty to help our
students seek the support that is available through the institution.
Thanks so much. Jessica: Thank You Susan. And I’m sorry I can’t remember if I mentioned
this but Sara and Susan are two of our Editorial Board Members and Justin and
Elinore or two of our Content Creators. So we’re going to hear from Justin now. Justin: So in college I founded the Coalition for Autism Support at Tufts, otherwise known
as CAST. CAST was a confidential, weekly meetup for autistic people in the Tufts
community. Every week we would email out a discussion idea in advance and then we
would talk about anything from current events, socializing tips, romance, how we’re
portrayed in the media, and countless other topics. That was my vision as I
crawled my way through the final leg of high school. I was isolated, rejected by
most of the people I thought of his friends, in an untenable
home situation, and suicidal. But then on the first day of college I met a guy and
he was autistic too. We were the first confirmed other autistic person we had
ever met. [Laughter] 18 years of being the weird one, the broken one, the thing nobody cared
for unless they were volunteering or being paid, and now we had each other.
Suddenly that desperate vision didn’t seem so strange anymore. And with some
signal boosting from the LGBT Center we had some initial members and we held our
first meetings. Fellow autistics saw opportunities they never thought they’d
see. We looked after each other, made space where we didn’t have to worry
about neurotypical rituals or beliefs or whether we really counted as autistic or
not. We forged a community where had once only been isolation and fear. That was
all I could have hoped for but we grew so far beyond that,
as did I. When we started for example, there was an Autism Speaks chapter on
campus, within two years there wasn’t. We started holding annual Q&A panels about
autism for the general public and they were enormously successful. After
establishing a solid foundation in our first year, year and a half or so, we
opened up the group for neurotypicals and greatly benefited from their
experience and insights into strange and mysterious corners of human existence,
like dating. [Laughter] We had visits from high schools helping spread the ideas of neurodiversity to a new generation. Generation here being used extremely relatively.
Outside groups even came to us and our members for advice, such as Mass General’s
Aspire program and the fine folks here. And when push came to shove like against our
own Child Development Department we fought for the dignity and worth of
autistic people in the court of public opinion. I really think it’s fair to say
that we changed the way the Tufts community thinks about autism. We forced
the world to see autism with human faces and as a part of our identities as real
human beings. That we have our own thoughts and desires and emotions
independent of our parents or the other neurotypicals around us and that we
overall kind of like who we are and accept our autism as a rightful part
of our existence and all that entails, the good the bad and the, by the way
have I told you guys how much I love the musical Hamilton? [Laughter] Thank you Jessica: Thanks, Justin. [Applause] Thanks. And then lastly we’re gonna hear from
Elinore. Elinore? Elinore: Hi everyone! Earlier Sara mentioned that many students lack access to official diagnoses, I’m one of those students and I’m really interested
in making programs accessible to students with and without DSO services. So when I was younger I was a gifted student and I had a lot of social problems. I mean I couldn’t
find a single friend until high school when I met one friend who was with me
until very recently. I had a rough time in high school and a couples years after graduating I was homeless. Fast forward about a year and a half and I had moved to Central California and found a job working with
autistic children. You should have seen me when I met these children, I bet my entire body lit up like a lightbulb. I could see
every one of my quirks in these children. Eureka! My obsessive research shifted from
the mental disorders I was interested in after my parents were both diagnosed with bipolar disorder to autism and neurodiversity in
general. I know my dad has actually received an ADHD diagnosis since I began working as a
behavior tech so my family’s clearly more neurodiverse than we first
understood. All of these developments really affected my desire to study autism and neurology, I’m currently a biology student at my local community college.
Along this ride I’ve come to accept my stims and other more visible traits but there are some issues I wish I had more help with, particularly co-occurring conditions, which of course, are more common with individuals on the spectrum. My wrists and other joints have been painful my entire life And I develop wrist ganglion cysts about every year or two. Unfortunately I don’t have access to healthcare so I lack both an autism diagnosis and management for my wrist problems. Additionally, since I have no documented need for DSO services I cannot use DSO
services to help me get access to the documentations of my needs. Due to
inadequate information processing it’s been incredibly difficult to get through
paperwork, confusing goose chases around different departments and the
frustration that quickly builds up while I’m attempting to complete these tasks.
As a matter of fact I attempted to go to college three times before succeeding
last semester. Each time it was always something like the FAFSA application, the
assessments, or simply trying to navigate the school’s online process. To succeed this time around I
had to simply continue picking it up getting one or two items filled out and
setting it back down over the course of about a year. When it came to assessment
time I pretty much just cried for two days straight waiting for people to help
me from step to step, building to building, and then bam! I was enrolled in college for the first time. Dear lord, I never want another hidden autistic student to go through that again. So, I want to make some changes at my college and see where it goes. Sara mentioned that her school’s autism program is no longer under Disability Services but instead under the Office for Career Opportunities and Justin’s program at
Tufts made incredible changes for their artistic population. I want to combine
these two qualities and make Community College truly accessible to people
with autism and/or information processing disabilities. My initial idea is to begin
a club for neurodiverse students. I want to know if it’s possible for us to set up a one-stop
accessible application workshop featuring peer to peer assistance.
I will actually be meeting with our DSO director tomorrow to learn more about accommodations and
where we might begin to branch autism supports away from disability services.
When we talk about for folding autistic and differently abled students into
community college and STEM majors what we’re really talking about is best
practices for everyone. It follows that when our most disadvantaged students’ needs are met, we’re leveling the playing field for all, with or without a documented need. Thank you for believing in students like
me. Jessica: Thanks Elinore. [Applause] Jessica: Great, thank you everybody and for
Justin and our long-distance contributors. So I want to, you know, turn
this presentation over to you to see if you have any questions, comments, any
anything you want to ask any of our contributors. Audience Member: The STS website Jessica: Yeah Audience Member: Jessica would you tell that to people? Jessica: Oh yes, absolutely. So yes if you came in late sorry, it’s been in development for over
more than a year we launched October of sorry August of this year 2018 and we
have more than 65 resources on STS to support students as they transition from
high school to college particularly in the STEM fields. So a lot of our
contributors are students. Justin maybe Justin and Elinor could even give
the titles or talk a tiny bit about some of the resources they’ve created. Justin: Sure
I think the first piece I wrote for them was a letter to my past like me five
years ago when I’m just going through the first part of my story there, the
not good part. I also have written about what to expect for intro STEM classes,
how the and how science curricula is different in colleges than in high
school. Jessica: Thanks Justin. And Elinore? Elinore: Yes? Sorry, can you, what, can you share some of the STS
blogs that you’ve been working on? Elinore: Oh yeah I, well as you know right now I’m working on prepping for kind of scenarios that we’re not really excited about like maybe police encounters and things like that. But I’ve also covered topics such as getting ready for the first day of school. You know, it’s really
helpful to go to school at least a couple times before you actually start your semester. And I’ve also worked on one for your schedule. I know that that’s not quite up yet but it’ll be coming soon and I’m actually really excited about that one. Jessica: Terrific. Thank you. Yes? Audience Member: Oh hi. I had a really good, quick question. Are you working with any potential employers that are actively recruiting for autistic students and in particular I know of a few that are looking at actively recruiting around [Inaudible] testing because repetitive systems [Inaudible] works really well. And I can speak, I have two kids who are autistic So I’m a I’m a I’m a mamma bear. So I really understand it from that perspective but I’d love to hear what your views are with employers taking an active role and seeing it as a value for some of the work that needs to be done especially if it’s repetitive and requires certain types of problem solving. Jessica: Yeah and that’s a great question we I
mean right now we don’t necessarily have any collaborators but we have featured
articles on people, on companies like Microsoft, SAP, Aspiritech so we do try
to raise everybody’s awareness that there that there are companies out there who
do value neurodivergency and who see the value not and in part maybe
because of a match for skills but also just thinking about what a diverse
workforce means for the success of your company too. Justin: And to normalize the practice
of hiring people who don’t on the surface seem normal. Jessica: And we’re also really
focused sort of initially on this original transition from high school to
college but you know Justin can maybe talk about those too, but you know we
know that’s that’s the next transition you make it you succeed and then what
supports do you need from that point? Yeah. Yeah? Audience Member: First and foremost just congratulations to both of your students Justin: Thank you. I had a tear coming down my eyes just thinking about what you guys must have gone through. In your high school days. So kudos to both of you. Is there any pipelines set up for
students to let’s say with with with these characteristics to start working
for a public agency let’s say for the city or the county? Cause’ we just got awarded an NSF grant to start piping those students into a city
position and and they have volunteer programs already set up for for students. I’m just
wondering what type of procedures if any are available or intact for for city
employees to hire? Justin: I’m aware of a lot of I don’t know all like the super deals
but I know a lot of like at least federal policy is kind of geared towards
the assumption that autistic people kind of we just stop at age 18 and so you
have you have this narrative like, I, I guess they’re trying to like make us
officially normal, so you know the the kids 13, 14 you’re trying to make them normal, 15
you’re trying to make them normal 16 you know college is coming graduation year
is coming up you’re trying to make them normal 17, 18 they’re not normal because
that’s not going to work and oh look you haven’t spent any time or resources
preparing for the future. Like I know in the like the federal
autism research budget less than four percent of it actually goes towards
adults and the rest of it goes to like genetics and child affairs. It’s really
skewed and it shows like how when we think of autism we think of like someone
half my size and like not staying still. This is hard by the way, staying this
still is not easy [Laughter] Jessica: Yeah and so we don’t necessarily like
STS as an entity but I did want to check with Sarah and Susan to see if they know
of any place in their their areas where maybe they have some connections to that
kind of pipeline. Sarah or Susan does that sound? Susan: I’ll pipe in I’m coming in
here from the Boston area so there is a wonderful organization that I know STS
is interfaced with which is called the Asperger’s Association of New England
AANE and they’ve been doing a number of things it’s a it’s a grassroots
organization that’s been doing both training with with school systems which
is very very important as well as life mapping with individuals to sort of help
in that transition first from high school to college and then from college
to employment. So they’ve had a very very profound impact and advocacy in the in
the Boston area so that’s one of the resources that I’m aware of. Again
they’re aane.org. Sara: And this is Sara I would just say that the Autistic Self
Advocacy Network that I mentioned earlier is a an international really
network that focuses on all the rights of autistic adults and of course
children as well but they’re really that is really where an autistic adult can go
to get support in all different areas so they they really cover the gamut. Audience Member: One of the things that we’ve done with one of the populations we’re working with is first-generation students and we’ve done
summer camps or we’ve called it lots of different things but we get them to
campus a month early and you know try to work through some of this. Would that have
been valuable to the two of you? Justin: Maybe not me personally, but I’ve seen some
stuff like that done, in fact one of the programs Aspire does is what they
call a college boot camp where they, you know, go to a campus and they you get
a, you get a tour, you see some of the major sites, and you learn about the
kinds of expectations. So yeah I’ve seen that work pretty well for autistic
people. Elinore: Yeah, I’m pretty sure we do have like boot-camp style things at my school. A lot of them require the paperwork that I was talking about. [Laughs] And so if we could simplify that process I do think that it could be helpful. I really do. As I said I wrote about the first day of school, and so you really can incorporate all of that into, you know, small groups
of autistic students getting really familiar with the college grounds. Susan: And if
I could make a comment one of the programs that I oversaw at a community
college in Massachusetts was a Trio program and it’s a federally funded
support which originated in first-generation low-income but has
expanded to offer additional support to individuals documented as having a
disability and so one of the initiatives was an early orientation, some early
advising, some previewing, which again was was can be generalized to a number of
populations that might find that transition challenging and embrace some
of the principles of universal design around access, so it was very very useful
and it was federal money that supported that. Jessica: Thank you, Susan. Audience Member: So I have a question perhaps Susan could help with this, this is a some
advice for us, we have an intern working in our lab right now who is autistic.
And the question was we’re dealing with some oppositional opinions from the
student who doesn’t want to follow protocol because they think that they
have a better idea of how this could be done. How can and then that works
for a career so can you give some tips on that? I’d be happy to, so one of the
blogs actually I I authored that’s up on the site sort of sort of looked at
some of some challenges in a classroom environment and it was through the
persona of a college faculty and some of the work that was done with the the
student as well as with the student support services and it really sort of
carved out a conversation and the conversations really were very
transparent and varying that you know I think one of the first and foremost
steps is to talk about it, to name it. And perhaps have some support as an employer
versus you know as a student employee or whether it’s an individual employee by
the institution to come out with some strategies to come out with some support.
Some individuals you know respond very well to some previewing, some scripting,
some practice, some orientation, as well as having a very very direct
conversation about interactions and I think that that’s where the staff
perhaps in an institutions disability or student support, I oversaw student
support, were able to be very valuable in sort of framing that conversation and
really coming up with some strategies that are going to work for it the work
environment. It’s not easy necessarily there’s no
one-size-fits-all approach, but I think you have to start with an initial
conversation. Jessica: Thank you, Susan. Susan: I hope that helps. Jessica: Thank you. And I know we have to wrap up in one second I just wanted to see, Sara, if you had anything
to add in terms of strategies because I know you do a lot of that work as well
and then we’ll say thank you to all of you for stopping by. Sara: I do that’s actually
the training that I provide for Microsoft for their autism hires. I would
definitely say take a look at the autism 101 article as well there and look at
the information about autistic culture and communication. Another resource that I
have to recommend is called collaborative problem solving through
Massachusetts General Department of Psychiatry,
you can find it on thinkkids.org. Those and it starts that conversation that Susan
mentioned so those are all additional resources for you. Jessica: Terrific, thank you. Well thank you very
much everybody we really appreciate you coming. We’ll be around after if you
have any further questions or comments. Thank you so much to Justin, Elinore,
Sara, and Susan. It was really great [Applause]

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