A Strange Story from a Strange World: My Life & the William and Mary Neurodiversity Student Group


Joel Carver>>Hi, I’m Joel Carver here at
VCU’s Autism Center for Excellence. My presentation today is:
A Strange Story from a Strange World: My Life & the William and Mary Neurodiversity Student
Group. First of all, I’d like to say thank you
to the wonderful people here at VCU Autism Center for
Excellence for having me. It’s a huge opportunity. I
really appreciate it and without further ado, let’s get
started. So I apologize for this slide. You can see
me. I didn’t realize that when I was remaining the
presentation. I have facial hair now, but that’s not crucially
important. And as every professor or guest lecturer at
a university will do, I’ll discuss who I am,
why I’m here, why you should be listening to me. I’m a junior
at the college of William and Mary. I’m currently
majoring in biology. Class of 2017. We’ll talk more about
the creative group at university of Mary. I can’t
say that I founded it but I can say that I made it what
it is today but got to keep a little bit of secrecy.
I’m an eagle scout. I am an autistic self advocate.
Before anybody goes wait a minute, what, I am autistic.
And now we know. And I’m a public speaker. A little bit
of a public speaker hoping to build that up as we go along.
And let’s see here. Okay. I was born at Fairfax Hospital. Now,
I put this on here because it’s a little bit more
of a story than it sounds like. You were born, okay, whatever.
I was actually born ten weeks early after some serious
medical complications. So
I
was seven when I was diagnosed with
Asperger’s and I didn’t know this until later but my
parents, and this is an important piece of how I ended up
where I am today. My parents, they really dedicated
themselves to learning because their goal was to improve
my quality of life. Every parent of an autistic child
wants the best for their child. It was specifically with
the goal not of improving my ability to do one thing or make
me normal but to make the life that I was going to live as
good as it possibly could be. I lived in — well, okay. So after being born
in Fairfax, I was moved around a while. Lived
in Washington, D.C. Lived in Leesburg immediately after I
was born. Eventually settled in Washington for a while.
It’s pretty much a suburb of D.C. but kind of growing
on its own right now. Eventually I moved out to Remington,
Virginia. If you’ve ever heard of this, I’m sorry. Between
second and third grade. A little bit out of order here
because I was tested for the GT program in kindergarten.
It was a rough process and I feel this is applicable to the
parents of autistic children who are hopefully listen
to this and to psychological professionals because when I
was tested originally I was slated for the bottom third
of ability and after being tested again separately outside
of my school they decided that was not the case and I was
eligible for the G testimony program. After moving to Remington
I was kind of tested again because there was a struggle
of not an ability to keep up with the material but
a lack of interest in the material and I think a lot
of autistic people have a struggle with people perceiving
they can’t when really it’s that they don’t in terms
of doing schoolwork. I struggled immensely with staying
on task, not for a lack of ability but for a lack of
interest. So it was decided that I would take a fourth
grade science class during third grade to be partially accelerated.
That went very well. My grades notably improved. So
after an arduous process, which involved numerous paperwork, numerous types of paperwork, a
test, the whole school, you know, having to sign a piece of
paper in blood it seemed like at the time, I was whole grade
accelerated. I was the first person in the school to be
whole grade accelerated from third grade straight to fifth.
And I mention this because it was a significant
decision to do so because my already existing social deficits
were complicated by the fact that I was emotionally
mentally a year behind in terms of development.
My ability may have been at a fifth grade level, but
my social skills were not. And it was an interesting year.
I transitioned from a — the smart kid. It was fun. For
a couple glorious weeks children would approach me and talk
about, oh, you’re the smart kid. Say something smart. It
was children being children and that did not last long. So
don’t think that I had a relaxing elementary or middle
school experience because people very quickly realized it
was more fun to make fun of me than to praise me. I don’t
know why they did that but they did. And because of my
autism, I didn’t have the social skills to circumvent that.
I rapidly became a target for bullying and this is something
that I’ve heard a lot of autistic people and a lot of parents
of autistic people talk about. I wish that I had in my
experience a way, an easy solution, something that I can
say to fix that problem entirely, but I don’t. What I can
say is it’s crucially important if an autistic child is
being bullied to address with this child by the parents by
the people at school that it is not a lack of their rights
as a person that leads to this, it’s not a lack of value,
significance; it’s the other child feeling a need to push
themselves up. This can I will warn lead to other social
difficulties. Autistic people tend to verbalize what they
believe to be the truth. They may tell their pierce that
you’re just looking for a rise out of me. That is not a
useful tactic for handling bullying, but I believe with all
of my heart it is the best thing to tell an autistic child
that they have value and to reinforce the notion it is not
them but the people bullying them that is leading them to
their treatment. On the subject of bullying, I
transferred to tailor middle school. I don’t like the use
of graduation when referring to elementary to middle school
and from middle school to high school. Transitioned, that’s the word I decided to use. I transitioned
to tailor middle school, which was not the exciting
introduction to the adult world that I thought it would be
as a fifth grader. It was more of the same. It was — the bullying
really started in middle school in full intensity.
A couple of kids singled me out as an easy target and
I was very quickly put on the bottom of the social pile. I say
pile because it is a pile. All of the children are unsure
of exactly where they are. They are in a mass of social
complexity that no one really understands and they’re
all pushing anyone down they can to be on top. This is
an incredibly difficult time for autistic people because
neurotypicals have no idea what they’re doing. With autistics
there’s no defined social strata. It’s all hormones
and transitions and adjustment from childhood
and adolescence. It could be entirely where I grew up, but
there was a large focus on growing up in middle school and even
in fifth grade there was a lot of pressure to drop all of
the childhood interests in favor of more adult interests.
This is a struggle for a lot of autistic people because
it’s a time when people haven’t really come to terms with
you do you and my story was Pokeman. I loved Pokeman.
I still do. Transitioning to middle school not a lot of
people did. And certainly not with the incomplete intensity
I did. It was okay if I liked it but it was not okay
for them that I liked it. I hope anyone ten dough doesn’t
get upset since it’s trademarked but we’re going to find out.
Because of the intensity with which I liked Pokeman,
it was easy to target that and get me upset. I became an
easy target for bullying in fifth grade and that shipped
right off into middle school. Also in middle school I believe it was seventh
grade, but I have no memory of this conversation.
I was informed for the first time that I was diagnosed with
something on the spectrum. At the time I was diagnosed
in — well, when I was seven I was diagnosed with Asperger’s
syndrome. They have since done away with that and it is now
technically Asperger’s spectrum disorder. I identify as
autistic person rather than a person with Asperger’s
disorder. Understand through this talk I may use them
interchangeably. That’s my preference. The technically
correct thing is autism spectrum disorder. I know that’s
an issue of contention among autistic advocates, psychological professional and parents.
Also in middle school I joined the Boy Scouts of
America. This is something that I highly recommend for
any — situationally recommend for any parents of autistic
people. Cub Scouts was something that I was in much
earlier and was not a pleasant experience but I can say that
Boy Scouts with parental support was a fantastic place for
me growing up. It was an opportunity not just to
experience the world, gain valuable skills, learn how to
interact with my pierce. I did a lot of social learning
in Boy Scouts, and it was a place that was free from a lot
of the more complex social behaviors. It’s a very simple
place. The big kids want to be big kids, the little kids
want to be big kids too and therefore the little kids end
up getting pushed away from the big kids by the big kids
and it’s just very archetypal when you have the different
age groups but at the same time it was easier to comprehend.
It was by no means a perfect organization, nor a perfect
group but it was a wonderful experience because I got to
feel confidence in myself, I got to be proud of who I am
and what I could do rather than be ashamed of it like I was
going to middle school. Eventually I transitioned to
liberty high school. Now, I talk a little bit about middle school
and I have one more point to make before I jump fully
into high school, and that is that it is crucially important
during middle school for the parents of ant autistic child
to support not only the parent child relationship but also
the child’s relationship with their friends. As anyone
can tell you except maybe a couple extreme extroverts,
it is difficult to make new friends. It is even more difficult
to make new friends in middle school. I was actually sent
to a more distant middle school because it was a lot
of my friends were going from elementary school. And this
was tremendously significant because it meant
that I could hold onto that group of friends rather than struggling
to find anyone at all to connect with. And outside
of school I was given a lot of opportunities to connect with
my pierce to hang out with friends and further those relationships.
Obviously friendships are a huge part of social interactions with other people. And learning
with a couple people meant that I had much better
odds of success when I was engaging at school in general.
So I highly recommend fostering not just parent child
relationships but also child relationships with their pierce.
Situationally. Observe your child’s friends. Make sure
they are a good fit for your children because it is
important they have friends and it is important those
friends are good friends to them. Now, high school, one of the — up until this
point it was the biggest transition period of my
life, it was the biggest time of personal growth. And a lot
of things on high school put me on the path that I am today,
as ab autistic self advocate, as a bio major and
as a William and Mary student.
The first point that I’ll talk about is joining the
swim team. I was sports avoidant for most of my life. I
dabbled in soccer in second grade, but it’s not a good fit
for a lot of autistic people. You ever seen like child
sports, early children sports? It’s not a fun place. The
kids all want to win. They all want to be the best. It
is cut throat and the parents want to win more than they
care about their kids doing okay. They want their kid to
be the best and it’s a lot of social pressure from the kids
to each other, from the parents to the kids, and in addition
to having asthma it was especially a place that I did not
want to be. I did not enjoy team sports. But it was
decided that I would join the swim team because something
that’s fairly common is clumsiness on land, lack of
coordination on land leaks to grace in water among autistic
people. I was a December sent natural swimmer and joined
the swim team because I wanted to be in shape. I wanted
to broaden my horizons and of course because my parents
wanted me to do a sport so I could get into college. And
it really was a novel experience because a lot of the
friends that I’d had in middle school had gone their
separate ways. They all wanted to be their own people,
socially significant, and had left me in the dust as soon
as they possibly could. But with the swim team, it was
friendship based in mutual suffering, because we all
trained hard. Never did well, but it was a good
experience. And it was unique because it was an individual
sport. My performance, while it did affect the team in a
general sense, I was not competing with my team. I was
competing with myself for a better time. And there
was — the swim team was great because they didn’t place
pressure on me. There was no if you don’t do better we
won’t be your friend or we’ll beet you up in the locker room.
It was do as well as you can. We’re here to support you
and if you can find an environment like that for an autistic
child it will do wonders for their sense of belonging and
self-esteem. I decided to take a psychology class my senior
year of class, partially because it’s interesting
and partially because it had a record for the easiest class
and I wanted to get an A. I was taking this class and was
assigned a book report on a developmental disorder. It
was not Asperger’s syndrome. So naturally when I was
assigned it I said, hey, I don’t want to do this. Teacher,
can I present something on Asperger’s syndrome in
they said, yeah, sure, whatever, that’s totally fine.
So I read Tony at wood’s book on Asperger’s’ syndrome, the
complete guide. And it was a profound and life changing experience
but more on
that later.
I chose to speak to my psychology about autism and the
fact that I was autistic. It was really the defining
experience that set me on the path that I am on now. I’ve
had many of these. Without one I wouldn’t be where I am
now. I’ve had many, but speaking and being accepted was
huge. I was able to talk about who I was and instead of
people saying, oh, he’s that weird kid; it was, oh, he makes
sense now. We’ll accept you. So to everyone in that
class, thank you. It made a big difference in my life.
Ironically enough, that was on Friday the 13th of 2012 in
December. December 15th of 2012, I was accepted into
William and Mary. And so two huge life changing events
happened within a span of two days and the only thing that
happened in between was shooting a bunch of people with
plastic beebees. It was a very significant weekend, and
William and Mary, I believe, is truly a great school for
autistic people. But enough of that pitch. I reached eagle scout while I was in high
school, and I am very glad that I did that. I don’t have
too much to say on that. It’s not a complicated thing.
I will give a piece of advice to any parents who have
autistic children or psychologists who have nonautistic children,
anyone who has children who are in Boy Scouts, don’t
think that the eagle scout is limited to making benches.
Some of you out there won’t think too highly of this
because it was made using a video game, but I actually
recorded a public service announcement and played it to my
high school about drunk driving, and it was — I believe
that it had more of an impact than a bench in park. So don’t
limit yourself if you can do more than just beverages.
Because there’s a lot out there and you’ll never know how
far you’ll go until you try. William and Mary, orientation was something
all right. I know a lot — I had a lot more belief in
my social abilities. I really reinvented myself which
I think is a huge benefit of the freshman year experience
in college. Eventually right before the deadline I declared
my major to be a — they didn’t have an advocacy major
at William and Mary yet and created the neuro diversity
student group. I said I’d mention this later during the first
couple slides and I will mention more later but I will say
the neuro diversity student group is a group for students
and by students supported by the faculty for neuro
diverse people. Originally it was one member who had been
recruited by campus faculty because she was on the autism
spectrum with the goal of improving the campus for autistic
people. Shy did a great job. Danielle Thomas. Shout out.
And it was because of her and a presentation on autism
that I gave to my freshman hall during orientation that I
joined the university student group and said, man, this
is great. We should get more people in this, which led
to what it is today. And here I am a junior at William and
Mary, an autistic self advocate, a public speaker and
looking forward. I’d like to do more public speaking
and spread the good word so to speak, but let’s talk
about some stuff that isn’t my life. Just kidding. It’s more
of my life. I remember several of the conversations I
had about coming to terms with my diagnosis. When I
was first told that I had — well, what if I have this, I do this thing,
I do this thing, I don’t know but I’d never taken the time
to look up the symptoms and look at myself objectively to
see if I had them. I had just heard syndrome and shut down
and eventually I got around this because I said, you know,
if I have this thing, I’ve had it my entire life. I am still
the same person whether I say I don’t have it, whether I
say that I do have it. If I wake up tomorrow and say I am
an autistic person, the only thing that’s changed is that
I have said that. I am the same person regardless. For
any parents trying to help their kids understand their
diagnosis and come to terms with who they are, I think it’s
a very powerful tool. It’s not like being diagnosed with
the flu. It’s not something you got last week and will be
gone in a couple weeks. Nor is it something that you’ve
acquired through the course of your life and that’s
crucially important for parents to understand. This is a
genetic lifelong condition. And I’m not saying this
because there’s no hope. That’s not at all true.
I’m saying this because for autistic people to be
successful and happy, they and the people supporting them
need to understand that they will be autistic their entire
lives. That’s not a bad thing. Just means they’re
different. So a big part with coming to terms with my
diagnosis was despite the fact that I’ve got the William
and Mary logo here, because it’s not quite applicable yet
was this psychology class. I had a great experience
in high school with this one class and this presentation
was huge, but what I think was even more huge was reading Tony
at wood’s book and seeing list of symptoms and having it
all laid out and looking in the pages of a book describing
a medical condition seeing a mirror. Seeing almost every
single facet of my personality affected in some way
by the list of symptoms that I saw, that all of the things
that I’d been trying to understand my entire life, why I
was so fixated on X, Y, or Z, why I loved Pokeman or whatever
so much was not that I was a freak, which was what I believed
until then, I was not a monster or a misfit or a reject.
I was an autistic person. It was a part of what I was.
I was not alone. And that realization profoundly changed
my outlook on life. It’s why I decided I needed to talk
about it and why I’m still on that path today, because
I don’t know if I broke down in tears while I was reading
this I know that I have since because of its implications and
I know that it was and is the most significant and life
changing event that I’ve ever gone through, because it redefined
myself image and was tremendous in making me the
person I am today. Now, this is president Heavily. He’s the president
of Mary. The next step was during orientation. I really
struggled with making myself as socially open as possible,
because I wanted more friends. I wanted more people to
have a positive perception of me. And it was really that
goal that pushed me into the realm of someone who was not
just socially competent but socially successful. And I
think it’s that goal that separates a lot of autistic people
who have — I will in no way define success by the number
of friends that you have. However, it is hard to be happy
as a child or as a teenager when you feel that you only have
three or four friends. It was the goal I want these people
to like me, not be my friends, be my bestfriend because I
wanted that my entire life. It was that transition to I
want to be the kind of person that people appreciate and
that led me to a new outlook to develop social skills
through attempted mimicry. We’ll talk more about that
later. I decided to give a talk about autism to my freshman
hall. After my high school experience with giving this
presentation, after being accepted for who I was rather
than seen as a strange outlier in high school, I really knew
that if I was going to be successful, happy in college, I
needed the people around me to understand how autism
affected me. That I wasn’t like everyone else. And why?
Because that understanding meant that people could be more
patient. They could be more understanding. For the same
reason that you wouldn’t expect someone with a broken leg
to walk up a flight of stairs, I might not be able to do
something that one or the other people in my hall could.
Having that understanding, that connection I thought and
did make my life substantially better. And during this
presentation I affected two people. Haley, the current
leader of the neuro diversity group, and my RA Kendra
Jackson who said I know someone who would really appreciate
this and went to Danielle who was the first member of the
neuro diversity student group and said I have an autistic
student in my hall. You guys should get to know each other.
That led to the neuro diversity student group. In I
tell current incarceration. This is a picture I’m very
proud of. On the left, you have Steve, author of the
tremendously influential and significant book neuro
tribes. A world changing history of autism. On the right
we have John Alder Robinson, New York times best selling
author, my mentor. In the middle you have me grinning from
ear to ear like a fool to be around such awesome people.
And I have the exercise ball up there because I remember
a very funny story from my freshman hall that has absolutely
no significance. But one of the people on my hall, we were
playing soccer with a yoga ball and he ended up kicking it.
It bounced across the hall into a door, across the hall into
the wall, across the hall into the exit sign that was
hanging from the ceiling and it just went. I have a lot
of fun memories in my freshman year. It was a hard time
but I want any autistic people to know it is a huge challenge
but can lead to huge success. It can lead to a different
life. Now, this is the neuro diversity student group.
What a motley crew we are. This is an outdated
picture. Some of the members have graduated, some have gone
on their merry ways, but in the middle with no sleeves in
December is me and two people to my left. The shortest one
is Haley. The current leader of the neuro diversity student
group and a fantastic advocate.
For those of you who’ve heard me use this word and have
never heard it before, neurodiversity is a rising self
advocacy movement started by but by no means limited to
autistic people. There was a movement a little while back
among the autistic population to appreciate the strengths
and differences of autistic people rather than just the
detriments of being autistic, but the core tenets are that
all people have value. That personhood is a granted right
to all humans and that should not be taken away for any
reason, whether disability, difference, or anything else
that’s covered in any other diversity or civil rights
thing. And secondly that brain differences have value
to society. In a very pragmatic way, neuro diversity
is useful because for example, this is an example
used a lot among neuro diverse advocates, modern classrooms
are where they are because of autistic people. And will
it be improved because of a combination for autistic
people. The example frequently used is lighting. Some
lighting is very harsh and does not lead to effective
learning. It leads to headaches and lack of attention.
Now, this has been demonstrated, but if you ask young children
which lighting do you prefer, they may not be able
to tell you. They may not notice a difference. But autistic
people will. An autistic student may notice there’s
a smell in the room that ends up making all the kids
drool and ready for lunch before anyone else does. They may
not even process it but an autistic person will. It’s
that universal search for accessibility, accommodation
that leads to positive social change.
Another great example is elevators. Elevators were
made for people in wheelchairs with polio because of the
Americans with Disabilities Act almost every building in
America that has multiple floors is required to have an
elevator. Now, I’m going to ask a question. How many
people out there have never ridden an elevator in their
life? I’m waiting. I’ll wait. That’s right. You guys
can’t hear me. Just kidding.
But because elevators were created for people with
disabilities, now people who want to move heavy things up
several floors don’t have to use construction equipment.
They don’t have to hire a bunch of people and try to cram
someone into a staircase. Elevators are a huge boon to
many groups of people, from as I’ve just said, people trying
to move heavy equipment or desks up office buildings,
people who have 67 floors to go up before they can get to
their floor. People trying to pitch to the boss but only
can trap them in an elevator for 15 seconds a day.
Elevators have had a huge positive success on corporate
America and all of America, but wouldn’t exist if it were
not for the Americans — well, not exist, but not be as
prevalent as they are without the Americans for
disabilities act. And this is just one example. There
are others, but I won’t bore you with droning on about that.
I’ll stick to the exciting story of my life and how awesome
I am: Move on. So the objectives of the neuro diversity
group at William and Mary are advocacy, support and
education. I bet you’d never guess. Advocacy is focused
on making changes for any given person who is struggling
to make changes on their own. With ten or 20 or 30 voices,
all saying, hey, we’re struggling, we need help. It is
received a lot better and more quickly than a single person
that’s saying I need help with this. They can easily be
ignored or just told no but when you have a bunch of us
reading a stink about it you can’t ignore it. While we
haven’t had troubles like that in my memory at William and
Mary, I think it’s important for things like this to exist
because it means that if for no other reason than so that
voices can be heard, and not just heard but welcomed. That
promotes thought on subject. Now, second goal is support. It’s really important
for an autistic person to feel welcome in a large group of
people in a college when you don’t have a small group that
you know well. It’s the same effect that toddlers have
when they’re growing up. This is for all people going to
college but more so for autistics. When in a new
environment a toddler will find attachment, security with
their mother and then explore. Once they feel safe and
comfortable and protected they’ll go off and be
adventurous. It’s because of that base they’re able to do
so. When people go to college it’s because of their
roommates or their freshman hall or their frat that they’re
able to branch out and try new things. And the
neurodiversity group aims to provide a similar support
group for neuro diverse people or anyone who’s looking for
it and just happens to stumble to us before they find any
other group. Because it’s a challenge. And especially if
you have a perspective that isn’t shared, if you are
2 percent of the population and are struggling to deal with
the fact that you can hear in one of your lecture halls going
the entire class over the professor and aren’t able to sort
out the noise or that you can’t eat at most of the dining
halls because the food is mixed and tastes really intense
and unpalatable or because you’re just really struggling
socially and don’t have anyone to turn to, that’s what we’re
there for. And finally education. This is one of my
favorite things for in terms of neurodiversity student
actions because to me the most important change in my life
regarding Asperger’s and autism is understanding. When I understood that I had Asperger’s I
came to terms with who I was as a person in a way I hadn’t
before. I could understand myself. I could start at that point
and work outward to find out who I was. It was because
my friends knew that they were more tolerant. That if
I said something unintentionally hurtful they could
come to me and say, hey, I know you have Asperger’s, have
you — what did you mean by this and I can promptly apologize
rather than losing a friend over it.
Spreading information, especially with the lack of
information present in a good chunk of the American public
makes education hugely important for autistic people and
for any neuro diverse condition. At past we’ve — well, past tense, not terribly
complicated. We’ve had a discussion panel with health
outreach peer education, a program at William and Mary
designed around mental and physical health where we talked
to educator in that group about neuro diversity about what
anxiety, depression, ADD, and autism can mean for college
students and how these bright young people could help
others deal with it with their peers. We’ve been reaching
out with corpus, which is an up-and-coming disability — I’m not sure if it’s a support
group on Mary campus but they are a great group and I look
forward to working with them in the future. Most recently
we’ve had the disability day of mourning supported by
the autistic self advocacy network and run by Haley, the
current leader of the neuro diversity student group. It was
a heartbreaking but very well done event and
I haven’t told her this and need to send out a message, but
Haley did a fantastic job with this. It was very well
orchestrated and everyone involved has my utmost respect for
participating. Neuro diversity at large. Neuro diversity
is growing very rapidly. It’s supported by large groups
such as SAP, an international software firm, William and
Mary and hopefully soon VCU. Thanks for having me.
And I’m really hopeful for where it’s going because
it is, I believe, the next step in the universal civil
rights movement, which of course the civil rights movements
of the 1960s are by no means over and I’m just leaving that
can of worms unopened. But I think it’s the next direction
for America and the world to take, because it’s had a sordid
history with institutionalization and all sorts of nasty
things and we’re at a really good place right now and more
importantly making really good progress. So I have hope
for neuro diversity. Now I’ve got a little bit of time left or
maybe a lot of time. I have no sense of time. I’d like
to discuss a couple of symptoms of autism and Asperger’s
because as I said earlier understanding is huge.
Now, parents, psychological, professionals, teachers, you’ve probably heard these symptoms
described, hyper fixation or hyper focusing. A couple
other names for it. But these are symptoms that I feel I can
provide a little insight to that maybe your kid just
hasn’t gotten to a point where they realize they’re different.
Maybe you’re child is nonverbal and you’re struggling
to find a way to communicate with them. Or maybe you’ve
just never heard this side of the story because you’ve
never been around an adult autistic person. Look at me.
I’m an adult. And in addition hyper fixation, sensory
stuff because that’s complicated and hard to describe
unless you are dedicated to learning about it and social
skills. The most frequently referenced symptom of autism.
Now, Nintendo, please don’t sue me. This is Pikmin.
This is a game cube and now Wii you game. One of my favorite
games of all time. I was lovely in mad with it in middle
school and had so much fun with it. But it’s more than
that. Because I probably spent more energy thinking about
this than I did about my middle school education. Now, to
clarify, it’s not that I spent more time playing Pokemon.
I had limited time when I was a kid to play and I did not
like that. But when I was not playing, I was thinking about
it. I was creating ideas. I was thinking about new and
exciting creatures that I could suggest to Nintendo to
include in the game. I’m proud of this, I’ve looked at
Pokemon three and some of the things they matched is what
I came up with in middle school. I know it’s because of
the numbers and they had to include one of my 15,000 ideas,
but I’m still happy that one of them showed up. So that’s
another thing. But hyper fixation is more than just being
really into something. It is feeding off of an interest
in a way that I only see a neuro typical do when they are
in puppy love. When you are completely fixated, completely absorbed in something and you want
to spend all of your time on that one topic, on that one
person, with that person, that is the kind of intensity
that hyperfixation involves.
You feed off of it. You get energy from thinking about
it. You’re excited by it. And anything else that you do
requires constant energy to just pry yourself away from it.
It not something that you can just drop. You can’t say I’ll
just stop being interested in this because it’s not so much
that you’re interested in it as that you need to learn about
it, you need to think about it, and it is a beautiful and
wonderful experience and good Lord is it hard to deal with
when you’re trying to do something that isn’t think about
Pokemon, like do well in middle school. Something I’d like
to mention on this is how crucially important it is for
parents not just to tolerate but to support their
children’s fixations. Now, of course, you can suggest new
things and you always should because autistic people,
myself included, have a tendency to do what’s comfortable
rather than try new things. Always be gently opening ways
for them to expand themselves than their interests. Be
careful with when you push it, because I definitely grew
as a child when I was pushed, but there are also some
situations where I would say it would have been better if
I hadn’t been. And it’s all guesswork. So do the best you
can as a parent because you won’t know until you try.
However, please, please, please, please, from an
autistic person to you, support your child’s fixations.
Because they will not let go of them because they’re not
supported. They will only let go of them when they are done
with it. And that happens. Sometimes it will be a couple
weeks, sometimes it will be a couple months, and sometimes
it will be a couple decades. You don’t know when it’s going
to last. You don’t know, maybe their interest in trains,
as stereotypical as that is, will lead them to be a train
engineer, will lead them to be an electrical engineer when
they start working on computers. It’s hard to know when
that will matter and when you’ll be backing a horse that
will get all the way to the finish line of their life and
when it’s something that they’ll just be interested in for
a couple of days or weeks. But it is exhausting as an
autistic person to try and regulate your interests for the
sake of being friends with people, trying to rein in this
intensity, because other people just don’t want to hear
about it because they’re lame and they don’t like Pokemon.
But to have a parent support a special interest is huge,
because it means not just oh, my parent supports me having
fun with this, but they have someone to share it with and
they will go on. I mean, I have seen myself do this and
good God, it will be hours before they run out of stuff to
talk about. Then they’ll get right back into it and come
out 15 minutes later with another small lecture series that
could be hosted at Harvard. The intensity is beautiful to
experience and exhausting when it’s not your fixation and
I get that, but, please, support your child’s fixations
because the emotional feed of being able to share that with
someone is huge, and that’s why a lot of students, a lot
of autistic students have good relationships with their
teachers, because they can go talk about history or trains
or science with one of their teachers or professors. It
will make a huge difference. Don’t just say, okay, that’s
good, son. Get involved. Learn about it. You might just
find it interesting. The next symptom is not nearly as fun to talk
about. Overstimulation is something that a lot of
autistic people have to deal with on a regular basis and can
be absolutely crushing. Now, I have a couple of ways of
trying to explain what it’s like to be overstimulated, to be
autistic in an environment that’s not autistic friendly.
I think the best way that you can explain it is I want
you to imagine being in a room full of people, all of who
are talking to each other, and to you directly. You also
have two earbuds in and it’s not that you’re listening to one
thing; it’s that you’re listening to two different things.
You’re listening to God save the queen played by
five finger death punch at max volume and you can’t hear your
own thoughts over it and in the other ear you have an extremely
complex technical instruction, maybe a lecture on
thermonuclear astrophysics and there will be a test at the
end. If you don’t listen to that, you’re screwed. You’re
not going to do well in the class. You’re not going to
listen to your friends when they’re talking in the lunchroom,
you’re not going to be able to follow the conversation
and you’re going to get a headache from the noise in why you
are other ear, as well as the constant bombarding of input
from all the other people in the room and it can be something
that intense or it can be something as simple as
you’re in a room with a bunch of people talking to one person
and you can hear every single conversation all the way
around the room as well as you can hear that person, which
is to say not very because you can’t filter any of them
out. On the flip side of this, you have extreme
tolerance. I don’t normally wear sleeves. It’s just not
a thing I do. I don’t get cold until it’s below freezing
most of the time. And frequently this happens with autistic
people. They will have a sense or a perception of a sense,
maybe it’s not so much temperature as it is cold. I do
not do well when it gets warm, but I do really well when
it’s cold. I don’t do well when there’s a lot of different
noises, but I also don’t do well when there’s a single
noise that’s really loud most of the time. So it can be
all kinds of things, but understand that your child will
likely struggle with where exactly the line is and you will
probably struggle as a parent or psychological professional
trying to get a kid to put on a coat when they are,
in fact, sweating. Understand that, yes, they may have
some weird looks thrown their way, but find a balance
between what does them harm because of the social repercussions
and what does them harm because they’re sweating like crazy
in a light sweater when it’s below freezing.
And the last subject here is meltdowns, which is
something I’m sure parents of autistic children are very
familiar with. A full meltdown is something that I
wouldn’t wish on even the bullies that I had in middle
school who were formative, shall we say, in my life
perspective. A full meltdown is a horrible experience because
it’s not just being overwhelmed to the point of
exhaustion, it is losing that sense of ending it. I won’t say I have the
cure to that because I don’t. I will ask as caregivers or
friends or psychological professionals, please, for the
love of God avoid your child or any autistic child having
a meltdown if at all possible because as bad as it is for
you having to pick them up in the middle of a grocery store
it is worse for them. I can promise you that. And I can’t
give you a this will always work solution, but I can give
you two things that have helped me. I can’t claim credit
for the second one. The first is remove the stimuli. This is something
that will probably work in almost all cases. If you can
separate them from what is causing the meltdown at all, it
will help. The second, much more specific, is ask them
about a special interest. This is something that I
wouldn’t have thought of unless someone very close to me
had done it when I was having a meltdown and I have had only
— I can count the number of melt downs I’ve had in memory
on my hands, but they are not something that you forget.
And anyone who is able to help you get out of that is someone
that is very significant, because that’s not something
that’s easy to find.
Any way, the topic that did not — not topic. The idea
that was used was they asked me about my special interest.
Because it is very difficult to stay upset, to stay — not
even upset. It’s difficult to do anything but follow that
path, even if that means shutting off — it’s a
distraction, and it’s such a good distraction, even when
you don’t want it to be that even in such an intense
situation as a meltdown, if you can break in and get them
to hear that — you know, tell me about this thing. One
of the ones that I hear a lot from parents nowadays is mine
craft. Tell me about mine craft. How does this work.
Keep asking questions. Stay involved. Make it clear that
you are trying to engage them on this because it is not
something that happens a lot. And it’s one of the reasons
it’s so important, because it is a pull, the likes of which
neurotypicals will likely never experience. And it can
work. It may not. I’m not saying that anyone should
believe 100 percent that this will work, but give it a shot
once or twice and best of luck to you and to whatever poor
child is having to go through a meltdown that you would be
trying that, because it is not a fun time. And my last little bit here is social skills,
something that’s very important to autistic people,
something that’s very important to teach autistic people. As
I said earlier, one of the — the two biggest breakthroughs
for me socially were when I realized first of
all that other people responded more like me than they didn’t.
And second of all, that people are completely self focused
95 percent of the time. It is easier to explain to an
autistic person, at least in my experience, that if they want
to have more friends, do nice things for those people.
I’m not saying prescribe them with food or anything like
that, but make a connection. Because it’s as simple as everyone
wants to be heard. And whether you really care whether
this person had a great day or not is irrelevant. Because
you want this person to be happy. Because if they’re happy
and you made them happy, then they may be your friend.
They may like you. It’s a bit utilitarian but it comes from
a good place. It comes from wanting that person to be happier.
And from that angle it’s actually from my experience
very easy to change the perspective of someone who doesn’t
have autism from this person is weird and I don’t like
them to, you know, they’re different but it’s very clear that
they’re trying to improve my day. And I really appreciate
that. Give it a shot.
Modeling is super important. If you can say, well,
how would it make you feel in a comparable situation. It’s
a lot easier to understand with the assumption that other
people work like you do. Of course this is not entirely
true and I in no way mean to say that, but for all our
difference, autistic people are people and function in a
lot of ways similarly to neurotypicals. It may be a
different trigger. It may be instead of, oh, I’m
frustrated because this person said they didn’t like my
shirt, maybe it’s this person didn’t talk about my special
interest. Maybe they were talking about something else.
Maybe they were — those selfish SOBs, whatever it happens
to be those same frustrations, same feelings, the joy, the
sadness, the anger, the love all are expressed under
different circumstances. Find what makes your children
happy or sad. Say maybe they felt like you did with this.
Autistic people don’t lack empathy; they lack automatic
empathy. If they understand the situation, they’re going
to feel bad if you feel bad. But because you are crying,
they may walk in say and why are you crying instead of, oh,
what’s wrong, because they may be thinking, well, maybe you
heard great news or it may just be that they are thinking
about a logic puzzle or trains instead of focusing on you
because that’s not how we’re programmed. It takes effort
in a way that neuro typical people don’t realize. It takes
a conscious decision to go down that road. And if it’s
worth it to the autistic person, they can manage it. I
believe in all of you. It’s not easy, but it’s very
possible. And it does take effort. So if you are the
parent of an autistic child and they seem to be rude or crass
or anything like that, just take it with a grain of salt.
Understand they may be trying. And if they’re not, it may
just be that you aren’t either and the levels are naturally
different. Now, social inadequacy is a big thing and
it’s crucially important for autistic people to
have self-esteem. So I recognize to any parents
out there — I think I’m running a little bit close on time
here — to support your child self-esteem however you
can. Because it will have huge ripples throughout their
life. And deficit mitigation. When I say this, I mean
let’s talk about one of the more obvious social deficits.
Saying something unintentionally rude. If you don’t
know this other person is going to react poorly to being
told their ideas are bad and they should feel bad, not
much you can do about that because you didn’t know it would
be hurtful. If you do know that it’s hurtful, however,
you might not do it again. Something that I found to be
tremendously successful and highly recommend trying both
as an autistic person and for autistic people if you are
a caregiver, parent, or psychological professional or even
a teacher is have them tell their friends and the people
they interact with regularly if I say something that’s hurtful
let me know, because frequently I won’t realize and
I will apologize if I said something hurtful, but
I won’t if I don’t know. There are a lot of other ways
that these deficits can be mitigated and a lot of complex
efforts that people have gone through to do so. But there’s
a lot of books out there for people to read. There’s
a lot of material written by autistic people for autistic
people. Look me in the eye by John elder Robinson.
Fantastic book. I also recommend neuro tribes because it’s
useful to know. Fantastic read. And thanks for listening.
It’s really huge to me that I got to come out today and
tell my story, talk about this, share a little bit of information
and hopefully reach some people. If you want to
get in touch with me, my e-mail is [email protected]
Say, hey, I saw your talk. Just get in touch with me
if you have any questions or any opportunities for public
speaking. This is what I want to do with my life and I hope
that I’ve helped a couple people with
what they can do for their people, for
their autistic people. Thank you for having me and hope you have
a wonderful day.

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