Dr. Mark Yeager on Autism


Uploaded by usmids on 17.08.2011

Transcript:
Well I see a lot of familar faces. That's always good! And I want to do this pretty
informal; if you have a question as I am going through this please, ask and I will probably
need to repeat the questions so we can get it on tape so it is going to be share with
other families as we go forward. Thanks for inviting; that's always a welcome any opportunity
that I can talk about Autism and to help families out and So I'm hoping what I will share with
you is going to be very helpful. What I want to talk about tonight when Julie ask me about
some of the things that might be an interest is one of the things that I really have been
working very hard on; especially last year. or so and that is the internal or the unseen
things about Autism. And you know; the information I am going to share with you, I want to tell
you is the source is and that is from I have been blessed and I'm concerned myself that
I'm very fortunate that I have a number of friends who are adults that are on the Autism
Spectrum. And these adults who like I've said that are certainly my friends but they're
an amazing resource for me to talk to and for them to tell me pieces of information
about what they were dealing with that they can reflect on as they were growing up. What
they continue to deal with and so their feelings about they're dealing with. And so; a good
friend of mine, is a PHD. Student at Penn. State; Scott Robertson and I. We talked all
the times whenever in fact; I had spoked to him in a parking lot just before I had came
in here. He and I started begining to develop this whole conversation the notion about as
issues that are about a little bit more obvious prevelant at a younger age as some of those
behaviors being to fade a little bit that we've set have a tendency to think because
of behavior fades then so does some of the things that were motivating that behavior
out of a young age. And so; he and I began to talk about some the things that he was
dealing with as an individual on the spectrum and I have found it to be very fascinating
to find out as he got older and he was better able regulate some of his on behaviors because
of he recognizes them more. He begin to realize that people around him has support him were
begin to actually to think that everything was ok. That everything had kind of gone away
and what he was doing was dealing with it more internally now and it created a lot of
stress for him in which it turn created new behaviors that he had to deal with. And so;
Scott is pretty insightful about his on condition and his own personality and on his set of
frustrations and his on set of successes! One of the fascinating things that provides
for somebody like myself as a clinician is that it sort of is giving me permission to
have in depth conversations about things. Now; Scott is very open with things. He really
doesn't mind talking about any aspect of his life. That's not true with some of my other
friends even though we are as developing this conversation. They are beginning to open a
little bit more with it as well too. Scott, I hope to be able to talk about this at Autry.
Is anyone familar with Autry? Autry is a conference held in Upstate New York. It is a conference
that is developed, organized, put-on, and conducted by people who have Autism. And tippies,
like myself to be able to go pretty much have to be invited. We have to be invited by one
of the leadership on the coordinators. And so; Scott and I are hoping to be able to present
a lot of the information that he and I are continued to develop are an Autry. I think
that especially for the family members and individuals that will find it relevent to
the circumstance that they have now. You know; one of the things that can become that becomes
very frustrating to a person that is on the Spectrum; it is the recognition of;well let’s
back up, what becomes significant is that they first of all want to be recognize for
who they are and not necessary for what they are. This is a driving spect of dialogue that
is among a group of persons who are on the spectrum and not I'm only talking about persons
that are verbal that can express this. It seems to be one of the things where people
have other ways of communicating. Communitcating very clearly that they have concerned themseleves
about people identitfying what they are as they are opposed to who they are. And so;
one of my other friends have told me as she was growing up; she have said that she's always
sort of, sort of identified and she had a sibling but she's always identified after
their names were given, this is my child who is Autistic. And of course; we don't really
know, we don't really do that really but we have a tendency to identify because it give
us an explanation for certain behaviors sometimes. And so; we've feel about we've to give an
excuse for the behaviors and so that names that sorts of why the behavior is there. And
so; she have said as she grew older, she actually begin to resent the fact that was an unidentifier.
She have said; you've really have to know Georiga really appreciates that she have said;
she've said, it's like somebody telling me that I'm a flaming ball-headed redhead and
that makes no sense. And so; it may makes no sense to me that I have to be identify
by that way. You kow so one of the things that I've think as we've begin to see some
of the trense happening in Autism; we've really a strong focus on the idea that we need to
find things like cures and resolutions for behaviors and things like this and myself
and Advocacy Community is very concerned the fact that people viewed them as somebody needs
to be cured and fixed as opposed to someone that needs to be understood and supported.
And so; as we worked through this with as self-advocates, we are beginning to have a
different dialogue now with people that are on the spectrum because they see themselves
as simply as somebody that is unique and needs to be understood and needs to be supported.
That's not like any of us that we've see ourselves as a unique person with our own personality,
with our own likes and dislikes, and we've see that we need to be treated with respect
and supported. And so, I don't have to tell you as family members that's the way you see
your child but one of the things that I'm, we're all going constantly working with other
people on the community that sees them as we do and to support them the same way we
do not to see them as a description but yet as a child for or for a adult who they actually
are. When last year. when Scott came down last summer and spent an extended period of
time with me and my family. And one of the things that was very interesting about Scott's
by the way; he only ventured into the South one time will before that he is a home-growned
Northerner. He has very rarely adventured South of the Virginia lines so to speak so
when he came to the Deep South, it was somewhat of a Culture Shock not to mention the fact
that we in the South uses all types of idioms and figures of speach and references and he
was very confused by some of the ways that we just interact with each other. And you
and I don't see it as being incredibly different even if when traveled outside of the South.
He begin to be very interested that we as Southerners interact with each other. And
what makes it fascinating to me is that he have turned around and said; is you know that
your Southerners need to be understood and supported because we've don't really understand
what you are saying sometimes. And for example; he asks me in the South, you are always preparing
to do things. And I've said; everybody prepares to do things. And he saids; but you find it
a responsibility that to tell people that you are about to do something. And I've said;
what do you mean? He've said; you are always say we’re fixin to go to the store,we're
fixin to do this, and have said; I've finally figured it out fixin doesn't do nothing with
fixing anything. It's preparing; it's your substitute word for preparing and I don't
understand why you find the need to tell somebody that you are about to do something that makes
no sense to me. And as I begin to think about it; I have really no explanation for that
either but it is little things like that someone that has the observation skills of my friend,
Scott that we take for granted that becomes part of the complication issue about how they
need to be supported and how they need to be sort of coach along at the same time not
necessarily fixed and you know Scott certainly sees himself as a student of Southern Language,
a cinema, a Southeren dictionary, a Southern speaking language and he have said that he
got commited to a memory that he will be coming back next month to spend about two wks. with
me and my family. So I think that some of the things that we sometimes don't think about
Autism is that if we begin to look around other things like in this case, A Cultural
differences that's not similar in many ways than the individual who has Autism. And there's
a culture within that group within individuals. A culture that is if you've spent much time
around adults with Autism you've begin to find out that they are very culturally aware
of the fact they are like but different but like and different from other people that
are around them. And so; it's something that this self-advocacy group has begun to celebrate
is differences and their even as Scott said; even my eccentricities; those parts makes
it who I am. Like I've said; he is a phd. Student, he just depend his approsal; it wasn't
easy, we've finally got to that point got through that but he've defended that approsal
where to begin to collect data and worked for finishing that phd. up and he's gonna
then to find a job and research; he wants to be a Research Design person. I think he
will do exactly that. One of the other things to that I think is that they are certain public
pressures in the Autism Community to follow certain trans is the right word to say. We
know we think about treatment; we have always have an outcome of cure so to speak. We think
of treatment that hasn't have an outcome of something with some other type of resolution
of status so to speak. And that certainly; we should always to shoot for but I think
one of the things that some of the treatments that are out there now begining to do is that
they begin to be a little too harsh into trying to program the individual to become something
the treatment program saids; the outcome should be as opposed what the individual should be.
As so; there is a lot of discussion about that across the country right now about how
certain kids go through certain types of programs are very, very similar in behavior and language
delivery and all kinds of things that's becoming concerning now to a certain group of to a
large group of professionals out there. So it's going to be very interesting to see as
we move forward because Autism is as a profession is still in its infancy as you think about
it because even though we have certain individuals who have been on the spectrum for a long time.
We are only really considered a field of study for a short period of time how long it is
on the not real sure. I have said; I got two decades plus 20 something years. ago that
I will say that my field of interest is Autism. I will have colleagues that say why like 3
of those people, I mean; while you spend your life studying three or four people. Well;
it's more of a case people with all sort of based about the Autism was becoming how is
it often and defined itself. One of the other issues that has to do through with the how
the Autism updated; is this still part of this conversation that I already had mentioned
about the self-advocacy movement and the turnelization of these new things. It's that we are beginning
to actually close on the conversation and you probably have seen some of those conversation
with the APA is that it looks like that diagnostically we're gonna to go away from terms such as
PDD-NOS, Aspergers Syndrome, and as opposed it is going to be more of an Autism Spectrum
Disorder as a diagnosis and beginning to identifying the specific areas of focus that needs to
happened from an individual. Other words; it tends to some of the areas that programs
that needs to focus on as opposed saying here's a person who has Aspergers program and put
him in this program or this person has more Classic Autism and this is the one in this
program. That seems to be more based on that diagnostic category as opposed as a true picture
of what areas that the most challenging in. That Conversation in the APA has been drug
out after a long time that the newest draft that was put out actually does folds some
of the other things into Autism and movies some of the terminalogy completely out Aspergers
for instance as one of them so it's going to be interesting that have you seen some
of that conversation? Yes; I have! Fred and I have text about it. It's have been provenly
intense discussion because if you get into the folks that are in the diagnosticors;
...many folks that see it as it tries to steal to have those category to identifiers. When
you get into the Global issues in the self-advocates, they actually see some of those terms are
creating and I'm going to used this as a cast-system and upon a person's who has Autism and because
it's not really fair. I know that this has been said many, many times to many, many,
profession systems with many, many people that it's not really fair to say the person
who has Aspergers Syndrome as a High-functional form of Autism. That's not a fair Assessment
for the individual. I mean give me a example why? If we say that High-Functioning; if we
describe it as high-functioning, we have a tendency as a society to clump the whole of
steel to say this is high-functioning meaning that they have good language, that they can
read, and they can do a variety of different things that we assumed that they are part
of a high-functioning set of criteria. The problem of that is that I used Scott Amwood
as mine as an example: Scott has wonderful skills; he can read, he can comprehend , he
can organize certain thoughts, he can organize certain processes but his executive functioning
skills which means that he can invereably organize that information which includes simple
things like organizing suit-case to pack and go somewhere. Organizing his onset of schedule
to make sure that he's actually needed; he's very compulsive about certain things but other
things get lost in the schedules so things that he needs to be doing as an adult gets
lost in the things that he wants to be doing because it is part of his compulsive routine.
So his executive-functioning skills really fails him. Part of that is that is very problematic
for him because what that means some of the things that he really needs to be able to
do to function more and a more critical for certain things; he really doesn't get and
so he doesn't. He nevers describe himself as a High-functioning person with Autism even
though Scott's IQ has been as someone about 145. He's got any means to think about IQ;
that's a whole different set of categories or whole different discussions. So it's not
really fair for their eyes to say it's high-functioning or low-functioning; what it's saying is this
is a person that is on the spectrum and these are the challenges is this person is mostly
facing that they need support in order for them to move forward. I do know that the conversation
especially with family members; there's been a lot of frustrations even some anxiety about
the term Aspergers Syndrome going away because it there is a tendency onto hold onto that
as a diagnosis because it seems to for many people have read into that implies of better
outcome. Well; that's not fair neither because we have instances where many people that all
types of Autism actually have good outcomes. We also have a large number of folks that
are in all of those different categories that don't have such strong outcomes but what we
do know is that one of the things that's affect that is the types, mouth and tensity of the
supporters that person gets and moving forward in their life as opposed to what the diagnoses
to say what it is. As so it's gonna be it's a very curious time right now in the Autism
Community when it comes to the terminalogy and classification as opposed to the attitudes
and opinions of self-advocates, and families. So it is really kind of an interesting balance.
It's a mind diagnose as high-functioning when I looked up to find that it's not an official
diagnosis. Never has been; it uses various uses of high-functioning. It's only the lady
over the year.; it sqewted him over to the high-functioning. Right! It got lots of his
skins free and I was reading the book Vacee that those gave me reason that is gonna be
on the Spectrum. That's right! So that's what is very confusing in which is another word
to that category. Yeah; usually traditionally the way that term has been used not necessarily
universely but globally HFADA; not a true diagnosis. It's been to say that the individual
typically to fall somewhere into what the crteria: Asperger's says but don't need all
of the criteria to Classic Autism. There's right somewhere in the middle that's not a
fair representation of it neither. So it's get to be extrmely confusing and there is
Sensory Integration Dysfunctions that any person can have that they can be acquired,
they can be onset to birth so that's not a fair to say we have eccentric problems that
puts them on the Spectrum or a child that has some other nurological involvement such
a different: Epilepsy or something like that it may by itself stimmed to say that Epilepsy
and Autism; those stimming maybe simply because of the neurological involevement not neccessarily
because it's Autim so it's very confusing. It's very complicated when you get into the
reads of how diagnosises as heard. As so we see often; we'll see a diagnosis to keep one
so I know you see all of those things too. We see a diagnosis quite often that it looks
like they it actually looks like a chart of diagnosises that are compare to the behavior
but not necessarily representive of a true diagnosis. So we will see a kid sometimes;
I see kids all of the time having diagnosises of 7 and 8 different diagnosises.Well; That's
not fractor! When you get into the weeds of the whole thing, you are beginning to find
out that a diagnosis was given because there was a certain behavior that was documented
and that behaviors described that diagnosises when a truth globbilng the diagnosis really
is Autism Spectrum Disorder. So that's part it's trying to form itself at. Yeah! Right!
It is really helful that some of the kids to know a little about this. Ok! Some of those
kids about this; lots of times about they will say you have Autism, ADD, ADHD, or OCD.
And the OCD and the ADD is part of the Autism. It's a descriptor, a behavioral descriptor
by will see kids that have; I think about, think about your child as I go through this
and your child may either fit this or not. But in times; it will fit. OK! We'll see that
a child who have a diagnosis of Autism or Asperger's Syndrome because it is a true diagnosis
category right now. They will all say about a diagnosis is ADHD, most kids on the spectrum
does have attention-defecient issues that's a feautre of Autism. Obsessive-compuslive
behaviors; that's pretty much a feauture of the most of the kids and the adults even on
the oppositional defiant dissorder. Well; kids on the spectrum are very deffiant not
because they are choosing to be defiant; they're directly defiant because behavioraly they're
defiant sometimes they get this way as well too. They are getting other diagnosises as
personality disorders types of 1's are used thinking well don't a person making eye contact
and not connected to other people. They have a Personality disconnected because there is
a Social component to it. I have saw a diagnosis not too long ago that a child; this is a kid
about 12 years. old have diagnosis of Narcisttic Peronality Disorder and he's a very ostrich,
very semingly arrogant kid. You really didn't get to talk to him a lot because he knew a
lot of stuff. he knew a lot of stuff. And if you didn't know what he knew; he really
wanted you to know it. And if you knew that something wasn't necessarily his sister wanted
to do, he would correct you about it. And somebody with a Narcissistic Personality Disorder;
well that's not accurate! It's simply part of the feature again. So we're seeing this
as part of it. Part of the complicating involvement is this is a system issue is that those diagnosises
quiete often are reienversable through Insurance schedule. Aspergers and Autism are completely
denied through reinverse throughout your insurance. So that's complicated issues but too describe
you will see those kinds of descriptions, the Insurrance company picks on those things
up. So that's part of this difficult and so, now I've miss the thing that always fascinates
me about my friends is that you said that it very wonderfully. It's just really confusing!
Well; my friends that on the spectrum are really confusing too because sudden they're
trying to identify about all of this language when they all really want is to be understood
and support. So you can understand now how it is complicating for families, part of that
family member is that individual so it's equally maybe it's confusing to them trying to sort
that out. And so, you know the question often is then about this complicating issues, do
I tell my child that they have Autism? Do I tell my child they have Aspergers Syndrome?
And my response to that typically is this; this is again shared to me to lots of adults
that I have asked the same exact question. When you were told? and do you wish you were
told early? And w/out any hesitation the ones that were told later in life say you know
what I've always knew I was different. I always felt certain ways other people around me,
how they reacted to me, and when I realized the way it was happening, why is was happening
actually had a name and I wasn't the only person like that. That helped me so to beginning
to move forward and learn about myself. So I think that we don't just try to share the
individual by not telling them, we need to work through those differences to make sure
that they appreciate their own differences. We also hear people to say; don't slap the
label. Yeah! And because people have to play with that label. Yeah! Other people playing
that label! Yeah! Well;the doctor that refused to diagnose his son as Autistic for a long
time yeah recently! Yes! so; it's not the label. Well; it sounds like 2 years. ago.
those are my concern that they're so young and it's hard to create well that a 3 year.
old not interested right now in certain activities so it makes them not social. Right! I tell
you what our goal as professionals in the field is that and in this seems to be counted
to them; so I say is I want you to realize that I know I'm fixing to say sounds counted
to you. Ok! Our hopes are to identify a child absolute as early as possible because if we
can identfiy those sets of traits, those sets of behaviors, those sets of challenges as
early as we can and get the right types of interventions in place. Our goal, our ultimate
goal is that as they move forward; at some point, they are undistinguishable from their
typical peers. So even we may identify a child very young; Dr. Ron Mailved in Arizona and
I have those conversations. He is a wonderful, he is a Physicican. He gets it. And he; we've
met his conversations that there maybe a diagnose at a very young age, the real proof is whenever
if you can kick that kid out among other kids ultimately as you move forward. And so; I
have a tendency to agree with him on that because if we wait and wait also includes
waiting to start an aggressive types of intervention treatments that we are wasting a lot of time
because we are waiting on a name. If a name is given, it starts the intervention treatment
then let's get it going and then let's make it undisguinishable as much as we can but
not in the fact that it is still there. As you know; many of ya'll are familar with our
camp lifestole program. Your son; he is a programmer. By the way; I saw Seesaw the other
day, he said; if I saw ya'll, I will tell ya'll, hello! So her son is now a Radio saliver
so we're doing a team, we're doing a number of remotes that are super tall going across
the state. Tyler was up there, he wanted to be on the radio on top of the radio. So Salter
is one of his personalities, let him come out there and talk to him. It was great. It
was just really good and Tyler up there and they did a great job but it count a lot of
stone you know other things that I hear over and over among this is children's segments,
this is Children's sharing ideas. It's I'm not the only person like this. I made a new
friend. His name is Matthew. He is just like me. We like the same stuff. We like to talk
to each other. We stayed up late last night. I never had stayed up late like that before.
I mean the fact how you and I identify with people who as you and I identify with it is
on a common ground. So that common ground for a person with Autism is very important
to them. As so, we hear kids that camp all the time and say wow; he's like me, he's just
like me; that's really cool! And so, that tells me a strong piece of information about
how and these children on campus 7-17. They're looking, not only they're identity...
...but identity that they relate to someone else that means something. That's actually
a meanful connection with someone and this as we see the kids as Non-Verbal don't verbalize
that we see those bonds beggining to build because they are very connected. And even
though they may not be connected eye-to-eye doing things we think are traditional in our
actions with kids. They're no doubt, their connection becomes very strong. Just of course;
within 3 days. And so, you know that's one of those reasons why Jude talking about my
work of ideas and most of ya'll are familar with Work and team. That's one of the reasons
why my team are made board directors firm commitment and firmed to the point where they're
already have started but we're going to build our own retreasments for persons who are on
the Spectrum and their typical peers for all ages not just 7-17. This retreat center will
be involved having weakends being focused on socialization skills mixed in there with
fun. Actually, it's fun mixed within socialization skills quiete honestly we're seeing within
our programs is that interaction strong connection that ability to express yourself who you are,
where you are, when you are is very therapeutic even though it doesn't look like it. It is
very therapeutic. At the end of camp last year., I got a call from a parent, it didn't
start out the way that want to call they start. She said, I want to know what you did to my
son. And I thought, oh; ok. maybe you ought to tell me what's going on and I see if I
can walk you through it. She said, for the first time ever; I went to the grocery store
and I didn't have to drag him screaming out of the van. He went into the grocery store,
got the shopping list and said; momma, what I can help you get? And talking to people
in the grocery store and said; my name is Matthew. Saying Matthew; we're having carrots
for supper. What are you having for supper tonight? What did you hear? She said; he never
had done that before. He never had approached people in the grocery store. He's never interacted.
He's never being a part of what was going on and I have a different kid. So what you
did to him? What all we did to him is even the confidence you know to be out there and
not be so stayful and so intimidating by the world out there because he for the first time
in his life has spent three nights, the bigger part of four days away from his family and
suddents his life oh, I can do this. This is not so big, It's not so bad. And he's engaging,
he's still engaging. And so, again because it doesn't like therapy; it's doesn't meant
it's not therapeutic. That is very strong in knowing self-esteem and so that's why the
team board have made commitment build this retreat center and it is called the Sourize
Outpost. Our first project will be have treehouses where the kids can come and that is what I
want to see the treehouses look good and they all build within trees within their own steels
and share a common deck and a thing but you know we have those kinds of programs; we eventually
have the whole thing out there so we can also do things all summer long. Most weakends different
things going on. My kids goes to Church Campus for instance after Christmas before New Year's.
Well, I won't! You know our camp kids has been with us for a long time. Kids never been,
I want them to have the same opportunity. So that's one of the reasons why we committed
building this outpost. Then, we will also make sure that our Neurotypical peers are
out there and part of this as well too. That's an important part how it works thing. It's
a fascinating process when you see a child like that among so many different children
with Autism. There're so many different types of Autism. Not all have different names but
actually they have different names in general. You know Khali, Matthew, and you know Tyler
and they do have different names but it has nothing to do with their Autism. It has to
do who they are and the thing that bonds them together is this thing called Autism. It's
really fascinating to figure out how that's a productive part who they are and not a tendency
for people to see it's a problem. That's not to say; some of the challenges is that you
as parents faced as your children are facing right now. That doesn't meant that they are
not insermoutable this time too. I mean it takes a lot sort of alternative understanding
about how perceive some of the things that are going on. It doesn't mean that you can
accept everything, doesn't mean you should accept all of the behaviors. Obviously; but
it does mean that they have a different thing that motivates them. My friend; Scott for
instance when he was the younger adult he begin to realize he was suffering from very
Acute Depression and that Depression was because as he moved further along his life the support
systems that had begun that developed around him as he was growing up; his parents and
friends that were close by other family members as he moved away from them, the whole support
network just suddenly vanished. As so; he really had deep vows of Depression and still
does. Interesting enough as he goes back home; The Support Network as it was is not the same
anymore. Some people had moved on, the relationship is different, they don't see him on a daily
basis. As he says; many of them say Scott is working on his P.H.D. There's nothing we
really mean; he's just a ph.d student but he's still challenged by a variety of things;
some of them not much different and it was a few years. ago when he was needed their
support, he still needs a support and they have a tendency now to switch gears and they
are not thinking about him saying needing area, and certainly not adjusting some of
his newer things that had develop specially like the Depression stuff. So it's exactly;
it's one of those things that is internal and invisible part of Autism because like
I said; even some of those behaviors have a tendency to disfavor. They have a tendency
to shift or disappear doesn't mean that some of the internal mechanisms that were motivating
those behaviors that each gone as well too. The behavior manifests itself in a different
way. A good example; this is a very global type of an example is a kid that covers his
ears as they get older, the developed all types of defense mechanisms that doesn't iculmate;
they begin to realize that makes them stand-out. You may see them do different things like
just simply turning their head or moving away or reprositioning themselves or if you never
done this and one of the things sometimes my wife thinks I'm in some kind of Clinical
Assessment too because I will see a kid doing something and when I get you know by myself;
a lot of other times okay now what does that feel like? What they're doing? and I'll try
to replicating because I want to see what it does. It's amazing that if someone is talking
to you; if you simply step behind somebody else how much different that makes, that simple
act in a modulation of the voice that is coming at you.That's a very subtle, a very mild but
a very functional behavior that doesn't make somebody stand out if they are covering their
ears as much if they just repositioning themselves to the side and you'll see kids move their
ear their specially their high acute ear away from them and keep their ear the taller it
sounds; they do some interesting things so what we have a tendency to think is that is
gone now and so his ears must be adjusted or her ears must be adjusted not neccessarily
so. What's happening is that the mechanisms that are using the module way had become more
sophisicated they are becoming a little more aware of how they are making themselves stand-out
and they will modulate their behavior to modulate with that's being sort of stressing to them.
As so; sounds is one of those things that you will say the behavior will mature but
at the same time the functional of what they're doing still is accomplishing the same thing.
So we will have a tendency to say thank goodness his ears are doing much better that may not
be the case. You know one of the things we watch the kids at camp, of course; you know you can't being
in the profession that I have been in as long as I have been in. I just that my secondary
nature become a student of human behavior. I'm just, I literally become consumed with
human behavior. Sometimes; I guess it's my OCD because I really get really consumed with
watching behavior and never more so than at camp. When I'm at camp; I watched kids and
how they interacting, how they're behaving, how they're modulating, how they're doing
certain things. And one of the things that we is very interesting is that, of course;
we have kids in an environment that are not very often in. They're hot! They're sweaty!
They're around people that are hot and sweaty and many times they're new to them. So hot
and sweaty people also have developed that sometimes stinking people and then you add
the swimming pool smells in there and the sounds of a swimming pool. We also are so
fold to have a fireworks show and you know a lot of families are like I can't believe
they shoot fireworks. Absolutely! We're trying to send that kid on where somebody says there's
a fireworks show at the baseball game, you can stay and watch the Fireworks show because
we introduced that now. That's one of the things; we've tried to do with those programs.
As so; we watched that behavior. As I'm watching behavior does very so things that these kids
do to modulate their environment is absolutely some of the most sophisicating behaviors that
you will ever see. And the reason that it's so sophisicating is because it is done not
necessarily because it's an intentional behavior; it is a behavior that is done in order to
modulate something that's bigger than you and I can manage a certain behavior bigger
than what we can teach a person because they're doing a response to something that's very
pregret as oppose to you and I are actually trying to teach something which means we're
introducing a secondary where they're reacting primarily to it. Their behavior modulate is
almost like saying that they developed about themselves. So you watched the behaviors.
It's very sophisicated about some of the things that they will do. Here's a good example:
do any of your kids like to have their head rub? A lot of kids on the Spectrum they will
grab somebody's hand and will want you to rub their head. They are grabing your hand
and want you to rub your head. And so that's a behavior the we see very, very often at
camp. As so as we watched this and so we're beginning to realize a few things. For many
kids; it's a sign of saying I'm tired. That's something believe it or not; we think and
the kids we observe at camp is almost a behavior where somebody rub my head I'm going asleep.
This is a behavior that they're trying to engage not going asleep. They don't want to
disengage from everything so you will see them trying to make that interaction and they
will have their head rub. With some other kids like that, it's a sure sign of something
is going on like a headache, sunburn, something like that even though they have words sometimes
these behaviors are the more solid, reliable pieces of information because they may not
be able to to connect with what is absolutely trying to say to that behavior because it's
very strong. And so, that's kind of one example; this head rubing. We see lots of kids that
do that. It is sentry but at the same time it is functional in one of interesting, unique
ways. We have kids for instance; many kids on the spectrum don't like to wear caps. On
the packing list for camp; a lot of stuff that always says cap.We always have a whole
list of families that have come and say; my won't wear a cap and they come back to pick
up their kid who's sporting their cap and they're like how did that happened? He never
wears a cap; the reason it happened is because the entire discesity and the supporter you
need to wear that cap was persistent because we don't want them being sunburn and we have
parents says my child won't drink water. Yeah; he will drink water and they do because they
keep that water. We got to keep them hydrated. They are not going to flush sodas down so
they are going to drink water and they all do. And we have families that say all the
time; you know we thought they will carry a common and won't drink water.When he comes
to camp; he drinks water, drinks a lot of water. So they are certain unseen things to
that are motivating about by the environment that means the behavior is either acceptable
in an environment and not acceptable in another environment. So they modulate behavior that
says my child won't do this but you put them in this environment over here and they abolutely
will do it but doesn't carry it back home, no; not necessarily! And so, that begins to
still show us this unseen part of Autism is not always saying solid, rock solid is going
to be this way. It's very conditional between the environments and different things that
are fataled in the environment, things that are beginning to have this sophisicated, modulating
behavior that they engage in and they're adaptable. We have kids that come to camp a lot of times
and they will say, We only eat this, this, and this. And then we report back and you
know if not on the special by something; he ate ravioli and you know ate broccoli. What?
No! He haven't eating broccoli.Oh we got it on film; Yes sir! We got it; he ate Broccoli.
That's not the same thing the home is not for doing what it's suppose to do is the environment
persists a different set of circumstances and they actually more reseated than we quietly
often think. I think one of the things that Scott and I are hoping with message the internal
courses of Autism is trying to make people realize that you know the stigma that comes
along on a child with Autism it says that's a child misbehaving, needs a good spanking,
that needs more discipline, all of this stuff is just wrong! And what we really need to
do is beginning to make people realize that their behavior is simply an hour of expression
of something that you and I can't see. It's something that you and I maybe fortuanate
enough to realize but it's not what the behavior says it is. It's something else that the behavior
simply the display of something else that this puzzle that we got to put together back
here. This is just what we can see. These are the real issues. And the behavior world;
we called these andacities to that behavior. And many times; in a traditional behavior
a scheme-weader that most cases there's an a-andacity to a behavior. And what we are
beginning to realize that the Autism world; there's a common nation of andacity that merge
together in this bizarre set of instenses to create a certain behavior that makes it
more difficult to draw apart because it is not just connected to the dots. It's quite
explanational when you looks at some of the things that the affect is. And that makes
it much more complicating which means that for you as parents when you go to a promition
and you are trying to explain this to a doctor, a psychiatrist, or a psychologist, or a teacher
or somebody like that. That's why you sound to them kind of cracky because you know what
you are saying. You understand the complexity of what bold up to make your child to behave
in a certain way.You get that! They don't get it because in most cases those professionals
are absolutely training to become more leanier in thought. And this whole notion about these
things coming together and it's kind of like a reverse, anime explosion is like everything
comes together shapes forward as opposed coming out there to this person and you get that.
They're thinking leanier where you collectively thinking about all of the things that is your
child and what that affects. You get that and it's hard to make people understand that
which is always said; it's a lot of times professionals would just sit down, push and
listen to the families. They can begin to help that family to put their picture together
because to think they may not know is all of those things that Autism is or isn't. It's
confusing! For what they do know is that they know their child. They get their child and
know what's make their child tick, know what makes their child shutdown,they know all of
the things about their child and if you listen to those pieces that's the anacithes to where
it is that this observable behavior brings that child too. And so, it is unfortuanate
that we have many professions that do think real leanier. This has to cause this, this
has to cause this. It's not that simple in the world of Autism. We really have to change
this perodime for professionals to think in a different way about kids with Autism. There's
no other disability like Autism when it comes to the complex of how those clusters can occur.
I'm convinced of that. I have worked in the Psychiatric field for a long time when I had
worked for the Department of Health. You know and I can tell you there's nothing more complicating
than this processing we're trying to sort out. The benefit of having people like my
friend scott, and George, and Temple Grandin, and I'm sure that most of ya'll had heard
of and having conversations with people like Temple and Scott give people the benefits
of getting inside of Autism and trying to sell this is how those clusters were and this
is how this is what you were dealing with that the problem with that is when you talked
with Temple you get one set of ins that has nothing to do with anything that is revelant
with Scott's sometimes. So, there is not a global transference of understanding between
each person but it does give a brawl understanding of how those things actually may work and
how they not work in some things. So as you are talking to people about your child that's
one of the things I'm beginning to tell families is sure they are beginning to do this. Try
to make the people out there don't give it; get it by understanding that what you're seeing
is not where the issue. It's all of the younger pieces that make that happen that really are
the issue. Those are the pieces we're trying to help put together so that this can be either
to a accepted level or it can be to a taller level not only just for families but for the
indiviual for themselves. And so; we really need to get folks to think differently about
how those clusters create something that we have a tendency to spend too much time on
the absolute behavior as oppose to all of that other stuff is going on. All Right; Questions!
let me shut up and listen to questions
and comments. That's a good example to see how many of the testing tools that we used
are not will affected in helping us identify some of the components to a person who has
Autism. For Instance, the example that you gave really is less about connecting in a
compassionate way as oppose as his inability to regulate role-playing because that's a
role-playing. So if you look at the criteria for Autism; you see the part of it down here
there's says you know the inability to role-playing. So it's more about that as opposed but when
a lot of folks that as we look at the traditional application of many assessments because they
have been normal groups that have nothing to do with Autism. You know we're getting
better. The A-doughs; I'm trying to think which one that they use that I'm getting into
that. Was it the A-doughs? Ables; A-doughs, it's probably the a-doughs! Yeah; so the A-doughs
is really truly, they are trying to see how he can role-playing and so if we; (Someone
else is talking) exactly! That's what I'm going to say but;(Woman is talking again)
exactly, that's what I'm going to say is kids with Autism, they're tone vision when it comes
to experiences with that they generalize and so if it's that they never been exposed to
the fact that he is not going to react to in a appropriate way and that's like a Turbo
way but if it's slimming on because it's so specific that it's going to be slimming under
that it's going to occur. As so; those assessments, they're getting better as we're beginning
to understand more, more and more about Autism. Even the A-doughs which is an Autism Specific
one; there's lots of things that are being exposed to even about that seeing Miss Q's
and stuff for people that are being out there. So it's a developing field as we're beginning
to understand. What's more important that you as a mom recognize that he did react in
that way because well; he's never in situation, never encountered that or never been in this
facility. (Woman Talking) That's exactly right! That's right! That's exactly right! As so;
we got to do better at that. We really do! We've got to understand that as we're talking
about one of these individuals that share so much information. We really need to use
that well of information and apply to these testing instruments as well, too. So they
are less, well; they have more input for persons that really get it from the inside out as
opposed to us observing from the outside in and how that bounce strucked. We got a long
way to go though yet; being honest with you but we're getting there. It's a whole lot
better. The A-doughs that's probably that ya'll what's ya'll had went through. That's
a lot better than the cars that has been used for how long? Cars were first ridden in the
70's I guess; like in 74 or in 75. This, the last question on that is do you think this
child has Autism? That's the whole purpose of the whole thing was trying to get point.
Now; last question is you ask the parent, do you think your child has Autism? Well,
No! We're just here trying to find what his that's not the point. We're getting better
at that but we still have long, a pretty learner for a while. But, then again; I.Q. tests,
we still learning in with those. In matter of fact; I.Q. tests are beginning kind of
fade significance what they are certainly are in the 80's or in the early 90's. People
don't look at I.Q. tests and saying this is the be-all that used to in the 80's. If you
have an average I.Q.; you know college probably ask a question; do you have an average I.Q.?
You know that's not the case anymore. (Woman talking) Well; but well if you go inside of
that comment and you can trace it all the way back there. There is a beginning to that
comment. He at some point as have pieces of information across as step forward or either
he has heard it specifically in carrying forward because the kids with Autsim are often accusing
because of not doing is being able having sympathy or empathy and they really are. They
kind of do stink it up but I'm beginning to find out by working with my friends is that
it's maybe an ammplify issue about what you and I go through in greating. For instance;
if let's say, for instance; we have a common friend that passed away that was very dear
for both of us but we knew that person in a different relationship in some way. The
way that I agree maybe different than the way that she agree and maybe that she will
find may brief unacceptable. I may decide that I'm going to hang out. We are going to
get out on a boat that's what he always like to do we are going to get out on the boat
and going to fish to have a big time. She may think that's an insult; you should be
sallowed and you are out here celebrating. So brief processes is a weird thing anyway
and so we're stacking on top of that Social disconnect of understanding sympathy and empathy.
You can get some very mechanical responses to it. That's what we see it most of the time
out of kids with Autism. Does that mean they don't have sympathy like you said with dog?
No; they have to be taught through those behavioral responses even though they actually have gotten
it that they shouldn't have done that or they should express a certain thing. They don't
necessarily do it very effectively. It's sort of delivery not necessarily always lack of
understanding that. But; I'll share I have a really good friend of mine in Hattiesburg;
and her father is very ill right now. In matter of fact; it has gotten worse and worse. Now
he is on a ventilator, he's on a dialysis system. It doesn't really look good. Her teenage
daughter who has Aspergers Syndrome; her comment to me was I can't deal with it right now,
I got too much homework. I just can't deal with all of that. That's how she's reacting
to it; this is her grandfather. And so; that seems to be that's she's very empathetic.
You know she has no empath at all. The reality is that's part of her mechanisms to deal with
something that she sort of not equipped to deal with as well too. So it doesn't mean
it's inappropriate; it just come across it being inappropriate she's tranfering some
energy that she maybe seeing it as being sort of non-productive by reading this set of circumstances
into something else. So it's really; it's really kind of complicating when you get into
something else especially the sympathy and empathy questions about religion and I mean
I have kids all the time that say you know. I have been asked this by a number of kids;
if God made us, who made God? And somebody had to just couldn't had started it. Somebody
else may be responsible for that. I am not into that. I even had ask a lot of theologians
help me with that question. They'll say; you know I got nothing. That's I don't know how
to tell you about that right here. I got nothing for you. So it's a very complicating process.
So if you can trace that back; it will be fascinating to know where it comes from. (Woman
talking) Bits of pieces; it could be! It could be an instant he heard it at one point.
That he heard it at one point, that's all; you didn't think it's he ever never heard
of it and think he never saw it. It's really pretty fascinating they're a sponge. These
kids are sponges. Everything that they encountered becomes part of them you may not see it but
these weird opportunities at times it presents itself you're going; where in the world they
had come from? It came from some other connections somewhere that just had its surface at some
point. If you seen it some! Yeah! Sure! (People talking) Yeah, yeah, yeah! It's really fascinating
the way that these kids begin to sort of from how they begin to put pieces together in the
world and what you already have out I'm sure. I know that ya'll have and I know your son
is so well. They'll take bits of pieces of what it is that they know and they know a
lot but they begin to put those pieces together because it benefits their calls so to speak.
That sound familar! So they draw it from here to here and they're like, no. It's because
of this and it's because he's trying to or she's trying to support what it is or he and
she wants to do. That's not because they're lying! Even though; they maybe a very few
white lies ditch in there. They honestly believe to be the truth but it's bits and pieces that
they put together. And so; one of the kids when we took a group of kids hiking at camp.
We had twenty kids. Twelve kids were on the Spectrum. Eight kids were Typical peers that
would just ride along with us and we hiked about 5 miles. At the end of the hike; they
already had a trailer there that we sat up tents, and we did everything that we supposed
to do; Cook in at campfire, had marshmallows. Yep; we had campfire. One Mother said; ya'll
want to have a fire? Of course; we'll have a fire. Oh; I'm growing upset; I'm a little
concern about it. It"ll be fine. Just a fire! It's not a fire's fire, it's a campfire. So
anyway; I was telling before we start the hike, I was telling the parents; one of the
parents were saying, this is just great. We never thought that he would go on hike at
camping. This is just; we just can't how this turns out. And I was telling, that I was talked
to some teachers; I was telling that we're fixing to do this. And one of the teachers
said; you know what I got two kids with Autism in my class. It's all what we make it through
a day; what in the world that makes you think you could take twenty kids camping. What we do is go
to NASA in Florida. I was like it will be kind of fascinating but that will be an expensive
trip. That will be kind of hard to put together. He said; well, I think watching a rocket or
seeing a rocket that will just be fascinating something like that he's really into that
space stuff. I said; I don't know that will be really expensive. I don't if we could pull
it off. He said; I never thought we could. I was like; Oh, that came back to bite me.
And so; I think he wasn't neither even listening when I said that. When he said that; I was
like I know where that came from and so, we need to talk a little bit more about we can
but here's our obstacle: money, travel, you know just riding different things like that.
So it's just really amazing it's sponge to the environment about how those things required
and stuff. So; we've done a lot of things. We have taken kids on camping trips, hiking
trips, stramping trips, and we are committed doing those things and quiet honestly; it's
things a lot of professionals and families like I don't know about that. We took a groups
of kids to the coast and we tour the Pascagoula River place. On that trip; we have 30 kids.
Out of those 30 kids; about 19 of those kids had Autism and they are couple of parents
like these were families that their kids never come to camp close to them where you see you
know 60 kids with Autism all at the same place. They never seen more than 3 or 4 at the same
place. They were standing there as they dropping them off like; Oh my goodness! And you are
really up for this; I said, fine. It will be fine. As so; we got in the boat. We toured
about 2.5 hrs. in a boat all up and down in the Pascagoula River Base not 1 min. behavioral
problems. Now when we hit through our ground; we had a few that we had to sort of decompressed
after the trip but it is one of those things where I'm committed to the notion that we
got to make sure that everything in every other kids can do that we provide those chances
on. I mean; I'm just committed to that because I think that to do otherwise is not fair and
it's simply not fair. That's why we've started camp High School. I grew up as a boy going
to Boy Scout Camp. Every kid I went go to camp or at least have the opportunity to go
to camp. If they don't want to go to camp; I tell parents all the time, yeah; he may
not want to go to camp but I promise you if you see him at camp, he want to come back
to camp. And so; you know I just think that's part of that and it is part of the committment
that we as team had made. And as I started working with IDS; we asked being Jerry Alliston
are going to do similar types of things for older kids now. I mean we are talking about
transitional age kids that are High School age kid and young adults. We are going to
start doing singular type of things for older kids as well too to IDS. So that committments
there; we just got to make sure that we begin to get the resources to make those things
happen and Dennis have been great. He sent me e-mails all the time about the family have
found this and that have been very helpful so we have worked toward that. (Audience talking)
My response to folks that do that of course silently know make words work a lot of times
because I have been doing this long enough as that I have a teacher not too long ago;
over in Alabama that says, I've been teaching kids with Autism for 4 years. and I've said;
you really should be getting better at it because it's really not the right thing to
be doing. I mean, you really got some instinct issues in this classroom. So 4 years.; we
really got a lot of unlearning to do right now. And she; didn't know how to react to
that but it was really the truth because some of the things she thought was a good practice
in a classroom was the exact things that was causing someone to very troublesome behaviors
out of the 2 kids they were 4 kids in a classroom but they were 2 kids all of the 4 kids have
Aspergers syndrome. They were two of them that were handfuls for her and she was their
worst enemy because of her own practices so to speak. And so; just because, a person says
I worked with these kids that don't mean you have worked with them right. I mean it's something
that can't be ignored. (Audiences speaking) You know the thing about , the thing that
is part of this misunderstanding is that many professions and teachers are certain probably
some of the most I guess the most strict to this belief is that I am the teacher, the
agenda I've said in this classroom in this classroom is the agenda that everybody in
this classroom. What they don't understand is that a kid with Aspergers Syndrome you
know like Tyler he has his own agenda and it doesn't mean that he isn't going to learn;
it's just that agenda is very driving. It's a very strong force in who he is and if you
think that you campletely defined this force, you are just going to be gross involved. And
so; your agenda and that person's agenda at some point as to realize that those two things
about to come together but I see teachers all the time that really stumbled all over.
I have been following their own sword with a kid because they're saying I'm doing this
for 20 years. and every kid have done this to this point. This one is too. My response
is usually you know you're coming 2 wks. and you really want some help for us. It's a matter
of lack of understanding of this internal lechansim that is so much of Autism. And maybe;
I'll probably agree with you Michelle; kids with Aspergers Syndrome they are like kids
with Classical Autism, they have their strong internal drives about certain things, certain
agendas and stuff but classically Autistic child has a more acceptable set of understanding
people around them because they clearly have a significant challenge where a kid with Aspergers
Syndrome seems to be only a child that's being covert; being overly covert, very oppositional because they're trying to carry
out their agenda and they realize the troublesome to get a little sneakier about it but at the
same time that's not becaue they're simply misbehaving it's simply because you're ignoring
a set of circumstances and you really want it to be yours; your own agenda. And so; we
see the bad thing for instance for several years. actually; that a lot of years. ago
went down to Florida a kid have been failed and it really gotten ugly down there so a
mutal friend of mine said can you come and help this family? We went down there and what
happened was this is a 11th grader who was taking Calculus who had Autism and Calculus
I mean; just do that math to start part of fun but I mean doing Calculus really not doing
accademically challenge kid we are talking about a kid but he went showing all of his
work and the teacher was just said it; he was getting F's, F's, F's and so the line
of questioning went sort of like when I was talking to teachers, a male teacher; I've
said what about his answers? He always gets the right answers. I said; so! He said; I
need to see that he knows what he's doing. I said; Okay! There's only two ways that a
person can come up with the right answer on a math problem: you either know how to do
it or you're cheating, maybe you're guessing but you can't guess consently right all the
time not on Calculus. And I've said; so we're going to say it's one of those 2 things so
which one it is? You know he doesn't cheat. He said; I doubt that he can come up with
the right answers but he refuses to show his work. He said; I need to know how he's doing
it. That's when I was getting a little frustrating and I was said, trust me; you wouldn't understand
how he's doing this if he was even writing down but it's probably his little magneticism
so he will start showing his work at a certain point. This thing had went all the way to
schoolboard up hill them a failing grade for this kid and the parents got so frustrating,
and the kid got so frustrated because he failed. Kids with Aspergers Syndrome do not like to
fail. Failure is not an option. If they see themselves failing; they went and start sometimes
like I'm not going to do that because I might fail so they're very resistance about that.
Anyways; this kid they got all the way, they have pulled him out of school. He took his
G.E.D. went on to a Community College got a degree in Computers and the last time I
talked to him which was probably have been 10 or 11 years. ago so I talk to the family.
He was in South Florida and he designs these programs when you go to hospital you know
they ask you all of your information you have to typed it in and you go what is a Data Base.
He designs programs that collects that information so it goes into the Data Base correctly and
make sure it is reinverse in lots of things. That's what he does as a profession makes
6 figures, and so I often wanted to get him and this teacher back together, and say you
know it's all of that Water or the Bridge but I just wanted to do one thing I like to
compare checkbooks let's just do that. Okay! And so, that's just a really frustrating set
of circumstances because it doesn't have to be that way. Really don't have to be that
way! (Audiences talking) We're about out of time. I know this well; I will be like I said;
because my work with I D S I will be available or around and so if you have questions something
call up the ideas. If ya'll know how to get me in my office with team that's cool too.
I'm here to help you out and so you know you feel free to contact me, and see what we can
do. And I'll be looking forward to be involved more with this group because of my work with
Julie as well too. Put them resources!