cc >> We have a nice variety
of panelists for you. We have two people on the
spectrum, we have two siblings and then we have a parent and
grandparent. So we have a nice variety here
that will hopefully address some of your questions.
We're going to get through probably about 10 to 12
questions that we have here, and at the very end of that, if we
finish, then we'll start taking questions from you in case you
didn't get a chance to turn this in or it's a follow up of
something, and all that I ask is that you'll ask the question,
I'll repeat the question for those watching on webcast and
watching online, and then we'll get the answers here.
Just to give you an idea on the panelists we have, and your
program has complete biographical information for
these people, but a Brad Wing is a student at Madison college,
graduated Verona High School last year.
He's representing someone on the spectrum.
We have Taylor Weber. She's representing a sibling
perspective. She has two brothers that are at
home, and she is away from home so it kind of gives you that
idea. We have Brian Pagel who is a
parent of those two boys. So he has a lot of information
on that, and each son is on a different end of the spectrum.
We have Al Kutil who is on the spectrum.
He is older than Brad so it gives us a variety here of young
men on the spectrum. Brad is married and so he has
that aspect to share. We have Jody Glynn Patrick with
In Business magazine, and she has the grandparent perspective,
the extended family, the relationship that goes in with
some of that. And then Adam Hunt who's joining
us, and he's representing a sibling perspective as well.
He has a brother that's 15 and at home.
So the first question that we have from the audience, we're
going to address this to Taylor, it's what's the hardest part of
having a sibling, and obviously that's a pretty broad question
here. The hardest part could take
several different avenues, but how would you answer that
question? >> The hardest part for me would
be more on a personal level. I have two other siblings who
are not on the spectrum, and I'm able to have a relationship with
them, hold conversations, but my two younger brothers who are
five who are on the spectrum, I'm not able to hold
conversations. So if I ask them how was school
or how was your day, they can't really answer that question.
It's more of my mom telling them, tell them you met someone
at school, and they'll be like JT met someone at school.
They speak in third person not understanding saying my day was
well, how was yours? It's kind of sad in a way
because you can't really have a relationship with them, but you
try your hardest at the same time.
And, Adam, we're going to direct that to you as well.
The hardest part that you deal with.
The hardest part probably is that he sometimes embarrasses us
in front of a big crowd because he makes a bunch of noises.
How do you deal with that? How do you cope with his
actions? >> I just pretend like it's
nothing. I just brush it off my back.
Do you wish other people were more accepting of that?
Yes. [LAUGHTER]
Thank you. We're going to go to a question
and direct this toward Jody. It states that when your child
or grandchild was first diagnosed, what was your largest
fear and how has that fear changed over time?
Well, I'm going to use fear and I'm also going to use relief
because when my grandson was two, I told my daughter he was
autistic and she stopped talking to me for a week.
And there were hard times. And she was almost like, mom,
you've worked with autistic kids, that's why you think this.
You're seeing things. I laid out photographs and said
he's not looking at anyone in any one of these and he's still
not talking and he's doing head banging and I gave her a lot of
different scenarios and she said I'm not going to discuss this
with you. And she wasn't available the
next weekend when I wanted to see her.
So I learned very early that the greatest fear I had was
separation from the rest of my family because I would be
someone who I thought would deal with it.
And my daughter didn't want someone dealing with it, she
wanted someone denying it. So what I've learned going
forward is that my grandson, who has Asperger's, is an incredible
child with incredible talents. And I know that my daughter
would still cure him if she could, and I would not because I
don't think he needs to be cured.
I think he's an incredible person in his own right.
So what I want going forward and what we have managed to do is
find a way where we're both involved in his care, in making
as many bridges for him as we can without the use of the
labels and without discussing it a lot in between us.
But now she's starting to say with his Asperger's he can't.
That's a huge step for her. So my fears going forward are
that he would be limited in any way in his education or by
external people not understanding all of the
wonderful gifts that brings to bear in his light and the world
would be dimmer than it should be.
Thank you very much. And, Brian, your fear on
diagnosis and if that has changed and what that might be.
When the boys were about three, I have twin five year old
boys who are both on the spectrum, we learned that they
were autistic because we had concerns about their speech.
At their three-year check up their pediatrician asked us how
many words they had, and we lied and said 20 or 30.
They both had about three or four maybe.
And then kind of allowed as to how we had some concerns about
that, and the doctor said if you want him checked out, he didn't
think there was anything to worry about speech wise, he said
if you want him checked out, have a speech therapist from
your school district, we live in Middleton, come out.
And the speech therapist said, and after about a half hour said
the boys were autistic. And my wife told me what they
said, and we were driving in the car, she said both of the boys
are autistic, and I said no they're not.
And she said yes they are, and they need special ed.
And I said no they're not, and I don't want them labeled as
autistic. And my biggest fear is that
people would always see them as a condition as opposed to a
person. I wanted people to know Dylan
and Jude, and then learn that Dylan and Jude had autistium as
opposed to saying those are those autistic boys.
And so I accepted early on that they would need therapy and
special ed after my wife said whether you think they're
autistic or not, they are. And so we started getting them
the help and what I've been working through all that time
then is making sure that people learn about them and all aspects
of them. So I want people to know who
they are and, again, not view them as a condition.
And everyone in our life has been very accepting of that.
People really kind of get to know them, and then just view
this as one aspect of it. Much like you might have a kid
that really likes fire engines or you might have a kid that is
very active, we have kids that are autistic.
And so that's just one aspect of that.
And that's really been something that's been a struggle all along
to make sure that we don't view them or pigeonhole them as that
and that nobody else does as well.
Thank you very much. Our next question we'll address
to Brad. It says, what are the best ways
for you to learn and to understand things?
Visually. I learn visually best.
Like I see pictures of things in my head in class.
Like when I am in class, I make flash cards so I can remember
things better. And sometimes I get help from my
teacher. My strongest subject is math,
but when I'm taking the humanities courses, like
biology, psychology or sociology, I need to make those
flash cards with online. I learn best by learning,
visualize like what are the two, questions that ask for, notes
that ask for a list, for example, the four ways of
something like racial classification, force of
technology, force of imperialism, force of symbolic
meaning. Those are the four symbolic
interactions, I think. I put them on a note card and I
put the definition on the back of one and I put the term on the
front or a person on the front and the explanations on the
back. I know there's one person I know
in this room has helped me so well with the organization
skills and study strategies, I just wouldn't be where I was
today. I visualize, yep.
[LAUGHTER] >> Just as a quick follow up,
Brad, while you have the microphone, my question to you
would be if you memorize things so well, and we talked
backstage about your abilities of doing that, why is it so hard
for you to memorize just some simple phrases or simple
terminology or a definition for an exam?
When, basically, you can look at things and remember it forever,
why are certain things harder to remember than others?
It's more important material you need to know.
It's more like I struggle with comprehension in the past real
much. When I was in middle school, we
weren't even sure if I could go to college, but now I am going
to college and I'm hoping to pursue a degree in...
[APPLAUSE] My plan right now, as of right
now, is to take some courses at MATC for a couple years and
then go to a UW school for engineering.
Fantastic. Thank you, Brad.
[APPLAUSE] A question from the audience.
On this one we'll go to Al, and it says, aggressive behaviors,
sometimes they're out of the blue, what do you think causes
that and what have you done in your life to handle anything
that's aggressive or stressful? >> Back when I was growing up,
anger was a tremendous issue, and I've learned to deal with it
as I've gotten older by reaching out to other people.
Doing physical exercise is important to me.
It tends to relieve my stress and that.
Anger is definitely an issue and not understanding people, their
body language can be a problem. It's difficult for me to get a
feel for whether their body language is really difficult for
me to understand. I still have trouble reading
people on a subjective level. >> And you mentioned that
physical activity seems to help you deal with that, in what ways
are you incorporating that into your life?
I'm an avid bicyclist. I like biking a lot when the
weather's good. Other physical activity, like
going on daily walks or I'm also a scuba diver.
Met my wife that way. All of these are good stress
relievers. So exercise is, in my
estimation, is a really good stress reliever.
So it's important not to, sure it's important to go ahead and
think your way through as a parent, to go ahead and sync the
problem, but physical activity is important to their
development as well. So don't neglect one for the
other. >> Thank you, Al.
That was a common theme that we had backstage.
[APPLAUSE] Was that there's so much focus
put on the mental aspect of somebody on the spectrum and
ignoring the physical activity because they may not have good
motor skills and be good at anyway, so let's not focus
on that. And really was the overall
agreement was that the more I do physically, the better I handle
situations. So that's a very important piece
that we got out of this. Next question to Adam, what's
the biggest challenge of having a sibling, now we talked about
the outbursts and things that may embarrass you from time to
time, but you talked a little bit with us about the challenges
of attention. Talk to us about that some.
Well, my brother, it feels like to me that he gets all the
attention, and I think that's because that he gets to do stuff
more often, and it turns out that I get to actually do more
stuff than him because I'm more independent and he is more of
the attention. >> Thank you for that
perspective. It was a case where he thought
that the brother gets to have treatments and go to places.
It dictates the family schedule. It dictates everything that
seems to go on, and yet when he sort of internalized it and
thought about it more, he thought, gosh, I have freedom
and independence. I get to go play with people.
I get to go places by myself. I get to left somewhere and not
have people hover over me all the time.
So those were really good things that came out of Adam's
discussion with us. Let's go to Jody.
How do you mediate as a grandparent and handle
situations like that, knowing when to be involved, when not to
be? >> Well, first I have to be
inside my daughter's schemata for her child, and that doesn't
have to agree with my philosophy.
We can take our own philosophies and have them as much as we want
and privately fuel them and believe that we're right, but in
the end, this is her child. And if I've going to have access
to that child and be helpful to her, then I need to do that in
the way understanding she is like a fragile egg where he is.
She is the egg around this child.
And I can't break the egg to get to him or I've lost my daughter
and maybe him. So I get involved in my own way
of figuring out how I can be useful.
An example: my grandson was terrified of bugs.
He has many phobias; bugs was one of them.
She kept trying to rationalize with him about bugs.
She told me don't get a bug around him, don't do this, don't
do that. So I took her for a ride and him
and my husband, I took them out to the country and I stopped the
car in the middle of cornfield and I told my grandson, come on,
we're going to run and hide. Things that we do.
We have adventures. I took him into a cornfield, and
he was so excited about hiding from his mother he didn't
realize that there were bugs all around us.
And pretty soon I said, oh, look at that.
Oh, what's that, and he started looking at them without that
framework of being afraid of a bug.
He walked back to the car with a worm on his hand to show his
mother and she just looked at me.
[LAUGHTER] He's no longer afraid of bugs.
I got him on a horse, he's now taking horseback riding lessons.
I think the grandparent's role, hers is day-to-day making all of
the decisions. Mine is working inside those
decisions as much as I can but enriching him and bringing him a
different way. I'm not the rule maker, and I
can't too much be the rule breaker.
I call that having adventures. [LAUGHTER]
Trying to get around it. But I think that you have to
always be cognizant that you're the one who can push him a
little farther as long as you're willing to be there for the
meltdowns and support her as well and be very cognizant of
how you don't want to be interfering.
You want to be supportive, and your way doesn't have to be
right it just has to be from your heart.
Thank you for that. [APPLAUSE]
We do to Brian. Brian, this one mentions the
benefits of early childhood education through public schools
versus private therapies, and you also mentioned that you've
dealt with both of those, so we'll let you address that.
Right, again, we're in the Middleton School District, and
that's an excellent school district for the interventions.
At the start of age three when they began intervening, this is
before we had insurance coverage for therapy, and so their
special ed people would actually come to our house.
Several hours a week we had occupational therapists and
speech therapists and other teachers coming into our house
and working with the boys. And when they began that, it was
about December of the year that they turned three, so both the
boys really had no real speech capabilities.
They could say one or two words here and there with no real
patterns, and they were very hard to regulate and control.
And within about 60 days of working with the school
district, Jude, the younger much the two, began to be able to say
his alphabet and he could say milk and things like that.
He had a little bit of a hitch where when he learned to ask for
milk then they began teaching him to ask for more.
And so he switched more with milk and for a while milk was
called more. [LAUGHTER]
But they worked with that. And so we got to see, with the
school district moving them along, they were very quickly
getting able to talk and we were able to understand them and
regulate them a little more, and then once the insurance coverage
kicked in we now have in-home therapy 20 hours a week.
Every morning for about four hours there's people coming for
two hour shifts, and then the boys go to school from 11 to 3.
The difference between the two is the in-home therapy is
play-based therapy. They do turn taking and they do
alphabets and they do regulation.
And the school is then much more academic and social because the
in-home therapy, each one has a therapist one on one working
with them. There's no real interaction
between them. At school, there's several
teachers in the room and they're only autistic boy in their
classroom. They're not in the same
classroom. They're separated for that.
But there are some other special education children in the
classroom and then some neurologically normal kids and
they're all integrated. And what the school does is
encourages, they asked us for permission to tell the other
children about autistic and we, of course, gave that.
The school encourages the other children to learn what autistic
children are like. And the other children get very
invested in helping them out. There was, Dylan at circle time
in his class, he didn't like to take part in circle time.
He would kind of sit back with his therapist, and after about
two months he finally came up and he joined the circle and the
other kids all started applauding him.
So now he likes to be in the circle.
Jude, at him classroom, they started teaching him to play
games. So they'll teach him to play
tag, and he's finally learned hide and seek.
We were never able to teach him that.
Now we play hide and seek together.
The other kids will say come hide with me.
And they go and hide with him and then they help him run and
play tag. So he's come home and he's
taught us hide and seek now. So he's learning a lot of social
interactions that were very hard to teach before.
We used to take him to playgrounds and he would want to
play with other kids and we would say go ask them to play.
And I can remember saying Jude, JT, go ask that boy if he wants
to play with you, and he would stand about 20 feet away and
say, do you want to play with me?
[LAUGHTER] And so now he knows to go up
and ask him. So that's a big aspect of the
school. And then the other kids are
learning too that Dylan and Jude don't always do things the way
they do. So they're very receptive to
different areas and they're willing to help them and say
things like, Jude, you can't sing during reading time.
You don't do that. And so they teach them those
things. And then the academic aspect of
school is really coming along in that they send homework home
with them, and so we're learning to do homework assignments and
take things too and from school. So the two differences between
them, the school helps them with more social learning and kind of
adapt to society, whereas the individual therapy I would say
helps them learn to regulate their own behavior, and it's
building one on the other. It's hard to say which would be
better or worse, but I think the two of them integrated together
help them take these skills that they learn, like turn taking,
and go to school and apply that. And then just things like paying
attention. The therapists work with them.
They get 15 minutes of therapist time and 15 minutes where they
get to choose what we do, so that helps them in school
because they're being more attentive and able to do things.
They can do stuff, like we went with Jude and we built a
gingerbread houses for Christmas, and he was able to
sit at the table and pick out his things for the gingerbread
house and glue them all together.
Just to see him for 20 minutes focus on an activity and
interact with the other kids, that was something we almost
rarely see. At home we call him a firefly.
We say he flits from one activity to another.
When he goes to school, he sits and he attends to things because
that's what expected at school. So now you can get him at home,
you can say you need to sit still and pay attention to this
and he'll do that. So I think that's all a big part
of the learning is just teaching him, it seems like there's so
much to focus on at once that just things like turn taking and
talking and academics, but they really manage to integrate it
together. And what's nice is the school
will invite us in, and they help with a lot of assistive
technology. Middleton bought some iPads to
use for special needs kids, and we met with the school to go
over what they do with that, and then we were able to use that
with our computer at home. We got our family to pitch in so
we could buy the boys an iPad to use, and then we've got the
school teachers who come and they show the therapists what
they're doing with the iPads at school, and the therapists will
meet with the school teachers and say this is what we're
working on at home and the more they integrate it together, you
can just see it's an almost, the expansion is phenomenal.
You go from not speaking to now they're five years old and Jude
can interact with you and have conversation, not as many as
maybe Taylor would like, but he will.
[LAUGHTER] And Dylan, who's further along
on the spectrum and much less verbal, he's able to walk along,
and he can listen to you and you can say things
like go up stairs and take a bath and he'll do that.
He knows how to ask you when he wants to play with the computer.
He's not real verbal, but he'll bring you over and he'll show
you the mouse. And all of these things are
things that he's learning to do and to regulate.
And then they pick up things, like Dylan really likes books
and books are something we've always had a lot of, but the
school works with him with books a lot.
And then we can work with those same books at home, and he has
that kind of facility. And then also one of our big
resources, just to finish up, is Dylan's special ed teacher, her
name is Jo Ellen, and Jo Ellen meets with us, meets with the
therapists, meets with the parents, and her uniform rule
with all the parents and therapists is you're not
anywhere near tough enough for Dylan.
So she takes no guff from him, and he's really good.
And she finally said we're going to take a videotape of him at
school when you're not around. And we all watched this
videotape, and she would say something like time to sit down,
Dylan, sit down. And he would start to kind of
wander away and she would say, Dylan, and he went right back.
And if he didn't, she was really good at monitoring him and so
she told us what he really wants from you is he wants you to push
him and he wants that discipline.
And we were sort of, we have to accommodate him.
We have to be nicer to him. We'll go do these things.
And once we saw that it really opened a door.
So using those school resources where they don't have the time
to take guff from him, they want him to behave in the class, we
started saying we don't have the time to take guff from you too.
[LAUGHTER] >> There you go.
That was a big part of our discussion before coming in as
well is that you're so concerned, you hover, you
protect, you guide, and at some point in time it's like they
have to learn on their own. They have to handle this on
their own. Their going to be on their own
in some situations. My wife does a better job of
that than I do because I'm trying to make everything
perfect and easy and that's not necessarily the best.
And so additional freedoms, additional learning, additional
consequences, additional independence can go a long way.
Brad, we address this to you. It talks about friendships.
You're a pretty popular individual, but the question
says, he is in his schools and his town, how have you gone
about creating friendships and interacting with others the way
you do? >> Well, when I was younger I
had this thing at my house, it was called Camp Wing.
[LAUGHTER] It was like where we'd have
a group of friends get together. There would be a babysitter that
day. We'd have a therapist as well.
We'd all get together. We'd go swimming, go to the
park, do some other outdoor activities.
Basically, we'd create our friendships.
A lot of friends I've known since elementary school and
middle and high school. In middle school we started
experiencing some bullying. Especially there was one summer
I was bullied real bad, and that guy hasn't been very friendly
ever since, but I do have a lot of friends that look out for me.
And I've done autism talks at school.
Many people come to that. The biggest crowd at an autism
talk I had was my freshman year in the library.
Like 80 kids came that year. I was very lucky and blessed.
I talked about my talents, my struggles.
I also had a big graduation party.
A lot of people showed up there. The struggle with friendships
having autism is not getting invited to too many events.
I get invited to plenty of grad parties but just, like, when
people have small get-togethers at their houses, that's the
struggle, and engaging in conversations, that's the main
struggle. My talents get to the
friendships and my outgoing personality, yep.
Thank you, thank you. That's tremendous.
[APPLAUSE] Al, here's a question.
It talks about employment and what you would like to see in
the way of employment opportunities and what you think
people on the spectrum have to offer that some may not notice.
Well, this is still a concern even though I've been in the
workforce for probably over 30 years now.
There's still, especially in this economy, there's a huge
underemployment. I'm glad that I'm not unemployed
anymore, but just realizing that underemployment is still a
concern for a lot of people. Just similar circumstances to
what everyone in the economy is doing.
What was the... >> The talents and the things
that you would want to make available that you know how to
do, you just don't have people knowing that you can do that?
Okay, I seem to be really good at doing math in my head,
and I'm a little bit involved in music.
That's important for integration for kids coming up through
school, that's important too. Finding employment opportunities
is knowing how the system works. And you can give them that
perspective, but let them explore on their own.
A balance is important to finding where their career is,
where their likes and dislikes are and really intuiting exactly
what their strengths really are and seeing where their strengths
are. Am I making any sense?
[LAUGHTER] >> Mm-hmm.
[INAUDIBLE] >> Oh, yeah.
Not really able to understand how the dynamic works in
interviews because, again, it's a social contact situation that
I have difficulty reading body language.
That can be a pretty big barrier.
It's still a big barrier for me at this point.
You get so little opportunity to really practice your strengths,
and, again, I'm still really not practicing my bachelor's degree
in computer science. I'm in the IT field in the
periphery but still I'm underemployed because financial
things are a concern. I can't really go back to
school. I have obligations as an adult
to take care of. So underemployment is a pretty
big situation, and knowing that I'm somewhat socially
challenged, I understand where people are coming from to a
point. I have gotten better as I've
gotten older. Realizing their strengths and
weaknesses is pretty important and realizing that even the
smallest littlest things can really make a big difference
like what his sons have mentioned.
Getting the intervention and understanding their strengths
and intuiting are they interested in music, that can be
a great motivator to integrate different kinds of thoughts and
giving them social context. That was important in my
upbringing because it was pretty important for me because I was
there with my dad because my family was segmented because my
brother had an accident, and I was alone at that point except
for my dad. Music played a tremendous role
in my getting through high school and learning the ins and
outs. And even though I was alone and
a little bit picked on, I just brushed it off, I guess.
It really didn't seem to bother me that much.
So just knowing their strengths and weaknesses and learning what
their likes and dislikes are and letting them explore a little
bit. Let them get out and explore
things so that they can learn in their head.
A lot of the spectrum can be in the head, but letting them do
things, the activities are important as well.
Just like his sons are important, getting them to
bridge the gap so that they can sync, so that they can think
about the things they're doing and how they can relate to other
people better. That's important to provide a
balance for them. >> Thank you, Al.
Our last question that we have here, and then we'll start
taking some from the audience, goes to Taylor and it concerns
the dynamic of the family. So there's the sibling
relationship that we've touched on already, but she has some
insight on how the interaction of autism in the immediate
family impacts her relationship with others.
Go ahead and address that. >> Well, I am 20, almost 21, so
there's about a 15, 16 year difference between my brothers
and I. So since I'm living in the house
anymore, I don't really get to talk to my mom all that often or
talk to my step-dad Brian all that often, and it's really hard
to try and maintain a relationship with my parents in
that sense because there's not really a good time to call and
chat with my mom about my day or her day.
Between 8:00 in the morning and noon she has five or six
teachers coming and trying to help the boys, so she's busy
helping out with that. At 12:30, sorry, excuse me,
11:30, the boys get on the bus, so she has about a two-hour
break there, but I'm at work so it's not really good for me or
her. And then when they get back at
2:30, she gets one off the bus and then 10 minutes later gets
the other boy off the bus. And then she has to drive them
to camp for three hours. So it's really hard to try and
have a relationship in that sense, and it's hard to get mad
or jealous. Those are not two words that I
would use in this. It's more of I'm trying to be
understanding of I have two siblings that are on the
spectrum and they need extra attention and it's just
something that I just need to understand.
I have to work a little harder at it, just like my mom has to
work a little harder at it. It's just something that makes
me sad, but you got to work through it.
Our motto or slogan with the Autism Society is trying to
improve the lives of all affected by autism.
And a lot of times we take it as the person on the spectrum,
that's who we're trying to help and that's certainly the main
goal of what we do is helping the life journey for that
person, but then it impacts everybody that you know,
everybody that lives with you or lives outside of the home, your
friends, your relationships, your extended family.
And that's a huge thing that will be tackled in the near
future is how to make that better.
We try to get understanding from society to our situation, but we
even have a hard time getting extended family members to
understand our own situation and how to make all of that work and
how to allow times for parents to be parents to others and
children to be children of parents and things like that
where it's all encompassing versus just the immediate impact
because it's far reaching. If you have a question, you can
just raise your hand, and we'll take a couple real quick.
Anybody have a question to address?
And I just need the name of the person that you might want to
ask it of. Yes?
This is to Brad. >> Okay.
[INAUDIBLE] I was just wondering if there
was struggles with understanding that his perspective on things
aren't the reality maybe? Was there a time when you
understood that you could realize that maybe you had to
look at it a different way. >> Let me address that too for
the webcast people so they can hear the question.
This is going to Brad and it deals with the question of a
14-year-old Asperger trying to kind of make things click or
make things work and what time in your life did you kind of
come to a better understanding either as to your situation or
what was going on? >> About like eighth grade or so
or ninth grade. That's when I, like ninth grade
or like late middle school/early high school, is when I started
doing more things on my own, like doing more things
independently like homework. In middle school I needed so
much help. I worked, we worked like hours
and hours a night when I was in middle school.
Brad, was there a time, I think the question may have
related to this as well, that things went from sort of make
believe and stuff to like real life important situations where
things seemed to come into focus more clearly and there was more
of a purpose to school and work or all that?
Things came in more clearly as I went to school work, like
11th grade. Things came in more clearly when
things were explained. Especially with my reading
comprehension skills. When I took academic reading,
that didn't come until, the really good skills, come until
once I took the academic reading class in college.
That really helped me with comprehension.
Also making things more clearly came in to like sixth grade too
when I started to think work needed to be taken, I needed to
take work even more seriously than I did in elementary school.
Yep. >> When were made aware of your
diagnosis or situation? Or when did you become
internally aware that you were different in some ways?
Probably like second grade because I saw I was in special
ed a lot. I was diagnosed when I was four,
but I know when I was three or four my words, my speech was so
out of control. I couldn't verbally speak well.
And I know that I can speak better now.
That is good. >> Can I jump in on this one,
too? >> Sure.
Would that be all right, David?
My grandson was describing his riding school recently.
He's 10, almost 11. And he was telling people about
Horsefeathers, someone that had never heard of it before.
And he said it's a really great school because everybody that
goes there has a disability and they let them ride.
He said everybody but me. And then he looked at me, and he
said wait a minute. [LAUGHTER]
And he looked at me like, answer that question.
And I knew I better not answer it given his mother.
And I said, Patrick, everybody has different abilities and
disabilities, everybody that you meet.
Some are more outside, like some of the children that are riding,
laying over the horse so that they can get their balance.
And some are more inside with just how we see the world, and
everybody's riding that horse for a different reason.
You can go out in the world and pick anybody and put them on
that horse, and they probably belong on that horse.
And he said, okay. But I'm wondering when, I think
it would be easier to have a platform to talk to him to help
explain why he feels different. So I would be a proponent of
talking to him about Asperger's and my daughter is of the thing
that he would feel badly or he would label himself and stop
trying. And so I'm honoring her
perspective now but trying to support him in that.
This is one of the most important and difficult
decisions I think a parent or a grandparent can make is in
helping a child realize they're different without being
different. Something so negative.
Being different is cool for a lot of people, so how can we do
that and still make society look at them and appreciate that
that's cool too? So I'm with you on that.
That's a hard talk. >> It goes to the whole
typical/atypical. It goes to, but at the same time
you don't want ordinary. We would all wish our children
to be typical, but then certain fantastic properties would
disappear with that. They've been given a gift in a
way and it's how to put that to its best use and how to make
people see that, latch on to that and make that really
prosper. Any other question?
You have them, this is your chance.
Yes? >> This is for Al.
[INAUDIBLE] >> Okay, this is for Al and it
talks about the timing of his diagnosis, which was
later in life, what made him actually seek that out or what
made the diagnosis come so late. >> As I mentioned earlier, anger
was still an issue even though I was diagnosed in 1992.
Why I sought the diagnosis, I saw that it was, looking at
myself, I said why do I have so few friends?
I was beginning to think, am I different?
And my wife, my first wife understood we need to approach
this so that we can figure out and try to get some kind of
resolution as to why you're so angry.
And when she finally got me down to Ann Arbor, Michigan, I was
diagnosed as that point because I really cared about my
relationship with my first wife. And it was detrimental to me
that I'm so alone. I'm trying to figure out, how am
I different? Why am I different?
Then a light went off and it said, oh, this is what's
happening. That's why I have my anger.
And when I finally got my family involved, and it took a little
while for them to understand I was Asperger's, that I was
mildly challenged. I still was high functioning
autism, certainly, and that I needed certain things in order
for me to control the anger and reach out to other people more
effectively. That's the biggest thing because
I like helping people. I want them to understand I have
certain strengths, and it's important to reach out to other
people and understand that just because I'm on the spectrum,
yeah I think have certain quirks, but as long as you
understand that I am on the spectrum that I can appreciate
my differences and the strengths that I have.
It's part of my joy that I like helping people.
I always have. Music was important.
Getting involved in the camaraderie that was part of my
drum and bugle corps, reaching out to students that I grew up
with in my college years. It's been liberating, to a
point, to really get a better handle on understanding where I
came from and the dynamic of how I may be different than the
neurotypical person. I still have wonder, he know
there's 15 classical symptoms for autism, and I'm not even
sure how many I exhibit, but it was obviously more prevalent
when I was really younger. So just learning the differences
and understanding myself better and trying to gain friendships,
which are important to me, and trying to reach out and make
connections to people is important to me.
Thank you, Al. Anything else?
Yes? >> I was wondering, you said
that earlier, this is to Al, sorry, you were talking about
how exercise helped you manage some of those feelings of anger,
and I was wondering what other strategies you found that helped
you? >> So this is directed to Al as
well, and it pertains to physical activity and if there
are other strategies for coping. >> Certainly physical activity
has been a mainstay of how I do this sort of thing.
At this point, I've developed the necessary mental acuity to
understand where my emotions are coming from and think to myself,
well, yes I'm being affected by this but the wheel of life keeps
changing and it's going to rotate around and things are
going to get better. Just having that realization is
important. Again, knowing how I can release
the stress because people on the spectrum are, again it affects
the whole family dynamic and affects the person that's on the
spectrum dramatically. If you can develop good coping
mechanisms to lower their stress and understand where they're
coming from, that's a critical skill because stress, it's a
constant thing. You have to be cognizant of
where your child is and how their adjusting to things.
Thank you, Al. We're going to wrap up.
I do want a round of applause, though, for our panelists and
for sharing their experiences today.
[APPLAUSE] Thank you all very much.
And one last note here before Marsha comes out to say just a
few closing words is that we'll try to have a few panelists out
front. We'll sneak out the back and get
around front in case you have just a really quick question
that you didn't ask or a comment that you'd like to share with
one of them. We'll get them out front as
everybody's leaving. But for now, I've got to get it
to Marsha. Thank you.
Well, I just want to say a few final words of thanks.
It's been a real privilege to be with all of you today, those of
you who are here and those of you who are online.
It's just been a wonderful partnership.
I want to thank the panel. You are amazing and you're so
gracious and generous to share your words with us, and we've
really, really learned so much from each and every one of you.
You have insights and you're willing to share those insights,
and that mean a huge amount. I want to thank our speakers
today who each provided such important information to all of
us. I want to thank Teresa Palumbo
and Molly Walsh and Clark Kellogg, who made this event
work so smoothly. [APPLAUSE]