Dr. Mark Yeager (1of5)

Well I see a lot of familiar 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 & 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 yr. or so & 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 & that is from I have been blessed & 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 & so their feelings about they're dealing with. And so; a good friend of mine,
is a PHD. Student at Penn. State; Scott Robertson & 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
& 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 & 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 & his own personality & on his set of frustrations & 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 altry. Is anyone familar with
altry? Altry 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 & I are hoping to be able to present a lot of the
information that he and I are continued to develop are an altry. I think that especially
for the family members & 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 & 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 & 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 & resolutions for behaviors & things like this & myself & 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 & 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
& needs to be understood & 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 & dislikes, and we've see
that we need to be treated with respect & 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 & 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 yr. when Scott came down last summer
and spent an extended period of time with me & 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 & figures of
speach & references & he was very confused by some of the ways that we just interact
with each other. And you & 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 & how they need to be
sort of coach along at the same time not necessarily fixed & 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 & he's
gonna then to find a job & 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 & language
delivery & 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 yrs. 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 & the turnelization of these new things. It's that we are beginning
to actually close on the conversation & 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 & put him
in this program or this person has more Classic Autism & 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 & movies some of the terminalogy completely about 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 & I have text about it. It's have been provenly intense discussion
because if you get into the folks that are in the diagnosticors;