An Introduction to Autism and the Autism Spectrum

– So I’m gonna be talking
this morning about an introduction to Autism. This is only an introduction, we’re gonna hit it very lightly. But I am delighted to be here to talk and we’ll have a chance, as I mentioned, for this group to ask questions later. I should just mention my
conflicts of interest, which are a grant of which Kasia is the principle investigator
long with a number of books and I also edit the Journal of Autism. This book in particular I would mention, whoops, and I lost that book ’cause I did something to the page. Oh my gosh, oh, please don’t start on me. Slideshow, back to this current slide. That’s what I get for
messing with the thing I’m not gonna touch anymore. The book at the top corner of the right is a third edition of
a book that originally got started for my undergraduate class from Cambridge University
Press and it’s just come out in the third edition, and
it’s relatively inexpensive. So I wanna talk a little bit about autism in terms of as a diagnostic concept, a little bit of an overview as a field, and something about
diagnosis, and then moving on to key findings from research, and then talk about
outcomes and treatment, and then finally, our current needs and some social policy issues,
which is a fascinating area. So development of the field. The origins of this really antedate both Kanner and Asperger. If you look starting with
the the work of Itard In France at the end of the 17th century, early 18th century, there’s
reports of Victor the Wild Boy, interest in so-called feral children, children who presumably were
being reared by animals, most of those children
probably had autism. If you read the reports of Victor, he had no language, had a
lot of unusual behaviors, he probably either eloped from his parents or was abandoned and
then showed up at Itard, that people assume this romantic notion of animals taking care of children if they were found in the wild. Which I can tell you did not happen, they would be food. And point of fact, with the
possible exception of dogs, animals are not gonna treat
children like animals. But it’s interesting
that we probably can see the first reports of children
with autism at that point. Then if in the 1800s, and the
book on the top corner here, In a Different Key, is a
wonderful history of autism. These people tracked down
Kanner’s first patient, Donald, who was still alive at that point and may still be, he’s in his 80s if so. And they tracked him
down and talked to him, but they also pointed out that the 1800s, some of the institutions in Massachusetts that took children with
what we now would think of as intellectual disability,
mental retardation, many of the cases describe
the cases where it sounds like the child had autism. From the point of who,
however. were actually defining autism, first describing it, the credit goes to Leo Kanner, the First American Child Psychiatrist, a refugee from Germany. He was at Hopkins and
he talked about 11 cases of children who had two things, one was autism, living in their own world, not being socially connected. And the other thing was what
he called resistance to change, and we’ll talk more about that. Resistance to change actually
meant several things. It meant literal trouble with change. Having trouble, having to
take the same route everyday to go to the big Y or stop and shop, and deviation the kid fell apart. Same thing with changing around
the furniture in the room. Kanner mentioned some of his patients, as they would come back
would be upset with him because he had changed how
his office was arranged. But this insistence on sameness also meant a tendency for the child to use routines, and Kanner actually as part
of that same package included some of the unusual
behaviors and mannerisms, the stereotype body
movements, the hand flapping. He saw that as an attempt
on the child’s part to maintain sameness in the environment. So the interesting thing here is he’s talking about this
interesting paradox. On the one hand these are children who are not socially clued in, but they’re hyper clued in to
the non-social environment. And we’re gonna try to
understand more about that as we talk today. A year later, Han Asperger
who is a medical student in Vienna and during the
war he was in Austria, in Nazi-occupied Austria, and he talked about a group
of boys who had something he called autistic personality disorder. Again, it’s been translated
various ways from German, that’s probably the best
way to translate it. But these were boys who had
self-centered qualities, but they didn’t show up until
the kids entered preschool when they would hug
inappropriately other kids who didn’t know who they were. These were boys who had unusual interests, they often pursued their
interest with great intensity to the point where it interfered with their learning of other things, which is a key point, ’cause
it’s that interference with learning that moves
it to being a disorder. And he also pointed out that the families had revolved, their family life revolved around the child’s special interests. If the kid was interested in trains, they have to go to the train station to see the 6:15 from
Lexington get in on time. And so he talked about these kids, again, as having autistic
personality problems. He did not see this as a
developmental disorder. Effectively, these two
descriptions set the stage for what’s a continuing debate, the tension between the broad
view and the narrow view. The broad view as we’ll talk about is supported somewhat by the genetics, which has identified many genes, which can mean many gene variance, which means there’s probably a lot of other combination of genes out there where people are maybe a little strange or a little hyperfocused,
but they don’t have autism. On the contrast, the narrow
view, the Kanner view is a classic childhood autism, and this is the tension
that continues today. We’ll talk a little bit about it with DSM. So the big accomplishments,
1950s and ’60s, quite frankly, not much happened. Things started to happen in the ’70s as children with autism were followed. In the ’50s and ’60s, as we’ll talk about with the DSM, these were
children who were regarded as having childhood schizophrenia. And that was because that word autism, people are, ah, autism, we know that word. It’s one of the four A’s that Bleuler used to describe schizophrenia. He talked about self-centered thinking. That’s not what was
being talked about here. These were children
who came into the world without a predisposition
to connect with people. But, that was a term that was used. It was very much impossible
to sort all this out because it of children with
childhood schizophrenia, which turns out to be extremely rare. But people really had no good ideas when the sad thing is, unfortunately, people in the ’50s and
’60s, as we’ll talk about, started blaming the parents
for the child’s problem. And we’ll talk about the history of this, which is very interesting. In the 1970s, however,
several things happened. One was an awareness as children
were followed over time, they had a very high risk for seizures. About 20% of children with classic autism will develop seizures of various kinds, usually major motor grand mal seizures, at various point in development, early childhood and also in adolescence. Otherwise, this is an extremely rare time for people to first develop seizures. The other thing was in the late ’70s, the first twin study came out. There had been a paper a few months before by two prominent geneticists that said there’s no genetics to autism. And then the first twin study came out which said there’s tremendous genetics. The first twin study was
done in the United Kingdom, Susan Folstein and Michael Rutter, they looked at same sex
fraternal twin pairs. And the reason they looked at same sex is there’s a gender
issue of bias in autism, and then identical twin pairs, and they discovered
among the identical twins was an amazing highly concordant. So if you had an identical
twin with autism, you were very, very likely to have autism. Not so among fraternal twins and in their first study,
which was pretty small, the risk was about the
same as in the population. We actually know that it’s
actually somewhat higher. There is increased risk
for fraternal twins, but not nearly as much as identical twins. And finally, in the 1970s,
the first studies came out that showed structured
education behavioral approaches were more effective than
unstructured psychotherapy, which until that time, had
been the only treatment. Let me say a word or two about DSM. DSM I and II are largely
of historical interest. They are very theoretically based, they have their own biases. Part of the problem with
having a theoretically based diagnostic system is, if you
don’t buy into the theory, you’re kind of screwed,
and that’s a problem. And so the big change in DSM III, which I give Bob Spitzer, whose
picture is here on the side, great credit for. Bob Spitzer was part of the
Washington University School in St. Louis who moved to Columbia, and they were really very
focused on developing what they called research
diagnostic criteria. This was a real change in psychiatry. When DSM III came out, it really revolutionized the field. In DSM III, autism was
included for the first time. It was called infantile autism, it was grouped under a class of disorders called Pervasive Developmental Disorders. They came up with this term out of nowhere ’cause it had no history. And in retrospect, they could
have used a better term, autism-related conditions,
but they didn’t. They used this funny term,
Pervasive Developmental Disorder, but autism was included. The trouble with the first definition was it very much was a definition
of Infantile Autism. It was monothetic, which
means you had to meet all the criteria, pervasive
lack of responsiveness. We know as children get older with autism, they do respond, they do
develop some social skills, especially if they have an intervention. Now often those are odd, blah blah blah, but it’s not pervasive. So there was a funny
category in DSM III called Residual Infantile Autism,
which was very problematic because the residual
problems weren’t so residual when you met these kids
in adolescence and adults. So many major changes were
made in the next iteration, DSM-III-R, which came out fairly quickly. We moved from Infantile
Autism to Autistic Disorder, and now all of a sudden we
have the polythetic description of the diagnostic criteria. Some from A, some from B, some from C. Social, communication,
and resistance to change. And this was again a big change ’cause all of a sudden you can
have different combinations that gets you a diagnosis
of autistic disorder. It was much better in terms of
approaching the whole range. The syndrome probably overdiagnosed among the more intellectually disabled. Then we had DSM-IV, this was done in conjunction with ICD-10. ICD-10 is the world system of diagnosis, technically speaking, DSM is
regarded as a regional variant, I believe, and of course
DSM has captured the field and did back in 1980, so around the world that’s what people used, but ICD, the International
Classification of Diseases, which is based in Geneva as part of the World Health Organization, by treaty we’re obligated to have a connection with the ICD. And that means those funny codes when you go to the hospital
and you have pneumonia, there’s a code, that’s an ICD code. And so DSM is related to
ICD around these codes, but if we’re doing the DSM and the ICD, at the time we were involved in doing it and I was in charge of the DSM part of it and Mike Rutter was the ICD-10 part of it. And we agreed, this is crazy. We don’t need to have
two diagnostic systems, one for America, one for
the rest of the world, we need one system if
we can possibly do it. This had all kinds of complications and other issues which I won’t get into, but anyway in the end, we did
a lot of bells and whistles and we did a big field trial. Over 100 rated, nearly 1,000 cases, 20 some sites around the world over year, and we came up with a new definition that was essentially the
same for DSM-IV and ICD-10. This was around for almost 20 years, and it worked extremely well,
as we’ll see when we have, I’ll show you some research
data in terms of research papers that was just an explosion of research. Now let me say a word about DSM-V. And you can sort of get my
take on it up at the top. Unfortunately, I’m sorry to
say, DSM-V is well motivated. Early on I was part of the process and I, along with some
other people, resigned because we didn’t like
the way it was going. They included a new category,
Autism Spectrum Disorder, great in terms of the name change. Another new disorder, called
Social Communication Disorder, which has basically no or
very little rational basis, but it was sort of thrown in there I think because they were rightly worried about not including some children. They were no longer a
subthreshold category. It’s what we called in the past, PPDNOS, or atypical autism, that’s all gone. So the criteria, we had two
rather than three categories, social communication and
Resistance to change. This was done on the basis of
looking at a big body of data from the ADOS, the ADI
doing factor analysis and other kinds of things. The trouble with factor analysis, I can tell you this from
looking at the DSM-IV data, you can come up, I can tell
you with the DSM-IV data, you can have a two-factor
solution, a three-factor solution, or a five-factor solution, take your pick depending on which you thought works best. Again, I don’t wanna over simplify it, but it is kind of you take your pick. And we went with the
three-factor in DSM-IV because we thought it
gave us more flexibility. And they went with two
factors basically in DSM-V, social communication and
resistance to change. We reduced our number of criteria, we had a number of criteria in DSM-IV that I think over 2,000
combinations and permutations could get you a diagnosis of
autistic disorder in DSM-IV. So whatever else was true, there were a lot of ways to get in. All of a sudden we went from 2,000 to 12. And in some funny way,
that’s all you need to know in terms of what the
issues are with DSM-V. So there’s some good news. The good news is the recognition
of disorder, that’s great. The bad and unexpected news, perhaps, is that despite the name change
to Autism Spectrum Disorder, the concept is more narrowly defined and there’s been a series of papers. I’m gonna show you one, but there have been a
couple of meta-analysis that now show this. My colleague, Jamie McPartland her, and I and Brian Reichow Who was in here, is now an associate
professor down in Florida, looked at the old DSM-IV
data, what we could find. About 30 cases have been lost in a flood. Let me warn you about winter around here. But we were able to recall these data and we went back and did, looked at them, and then we programmed it in for DSM-V, and we discovered a
very interesting thing. It was very specific, but the trouble was who it left out. And here is what happened to the cases. And what you can see here is among the high-functioning
people with autism, by the clinical diagnosis, a fair number, almost
50% lost their label. But look at Asperger’s and PDD NOS, most of them lose their label. This was not happy news. This came out, this literally was featured in the front page of the New York Times. And of course, what’s the
problem in this country? You lose your label, what do you lose? Services, and so this was not happy news. So but this time, the DSM folks had more or less wrapped it up and they
had to add a new criteria. Which was, if you already have
a well established diagnosis of Autism, Asperger’s,
PDD NOS, you can keep it. So that was the solution, which is back to my train wreck business. It’s like you’ve got two trains running on the same track. And it’s problematic, and I’m sure this will
be addressed in DSM 5.1, whenever it shows up. Let me say a little bit about
research and what we know. Genetics, we know there’s
tremendous genetic factors in autism, I’m gonna say something about social brain interventions, and a little bit to show you that we think actually our interventions are producing better outcomes. Research has increased in
terms of just literally the number of papers and
the number of journals. I think there are over 20 journals now that have autism in the title. I’m the editor of the Journal of Autism and Developmental Disorders, which is the first one. When I first took over,
now about 10 years ago, we had about 300 papers come
in every year for review. I think last year we had
close to 1,500 papers, which is just a tremendous number. And you can imagine,
I’ve gone from having me and two associate editors to me and about a zillion associate editors. But let me say a little bit about, this shows you the research early on, and this is grouped by five year blocks, except for that first block. So we can see that by 1990 to ’95, we had over five years about 1,200 papers. So that’s a little over
1,200 divided by five, not so bad, you can keep up with that. But with what’s happened more recently, I don’t have the ’18 data yet. It takes a little while to get them, but you can see there are
close to 4,000 papers a year. So how are you gonna keep up? I mean it’s good news and it’s bad news, ’cause it’s a problem in
terms of just being able to master the literature. Why has research increased? Well, there’s several reasons. First of all, there’s a lot
of basic fundamental interest in Autism ’cause it’s a protypical example of a disorder involving the social brain. There’s a whole body of work on this. I’m gonna show you a little bit. Borthers as the first one to
talk about this social brain and really talked a lot about autism and you’re gonna hear a lot
here at the Child Study Center about Social Neuroscience. And it seems also to be very interesting because we can potentially bring the brain and genes and behavior together and understand more about fundamentally what makes us as people social. What makes us so social? There’s also so social political reasons, parent groups and foundations
have just tremendously increased in terms of number and their levels of support for research, which is fantastic. Autism Speaks, the Autism
Science Foundation, the Simons Foundation
which is probably funding more research than the federal
government is at the moment. But it’s just really a tribute to the fact that parents who used
to be afraid of talking about having a child with autism, they say no, no, no,
we’re gonna work on this, we’re gonna fix it, we’re gonna tackle it. Which is fantastic. Finally there’s financial reasons, and people know Willie Sutton, people know who Willie Sutton was. He’s a famous law in
medicine called Sutton’s Law, Sutton’s rule, Willie
Sutton was a bank robber. And Willie Sutton, whose picture is here, they once asked Willie
why he robbed banks, he said, “‘Cause that’s
where the money is.” Well so the interesting thing here is, as money has increased in
terms of research, of course, people are on it. People that had previously no interest, all of a sudden, they have
an interest in autism. And I’ll talk a little
bit about the internet, it’s got good news and bad news, but there’s no question, there’s more media tension. I just saw something on Good
Morning America last week, which was a great ad for some lovely place that also talked about some
slightly unusual treatments. But for good news and bad news, we’ve got the interest in this and the internet will talk about it. So understanding autism. What is autism? And this movie did a lot to get people in this country aware of autism, Rain Man. Autism is first and foremost a disorder of social interaction,
including unusual patterns of learning and over engagement
with the non-social world. So, what happens if you
have a social frame. If you come into the
world and you’re ready to play the social game, right? What happens? You pay attention to people, you pay attention to
their faces, especially. You pay attention to
what they’re looking at. You learn from just watching
what they’re looking at. If something is dangerous or safe, you look to your mom or dad,
is it dangerous or safe? You pay attention to their language. We were just talking
about language learning. Language becomes very interesting early on ’cause all kids produce a range of sounds, some of which are not gonna be in their language that they speak. But they lose those sounds
’cause they don’t hear them. Kids with autism
sometimes have persisting, very unusual sounds that
never would otherwise be used in the English language. They develop prosody. Before nine, 12 months their
sing songs back and forth, it’s English prosody. They would prefer English
prosody if they’re growing up in an English speaking household. So it’s a whole, very
interesting package of stuff, and we don’t send children
to language school. That’s one of the major proofs, as I was talking with some
of my colleagues earlier of the existence of God, that children really do
learn language on their own and they’re very, very good at it. So even before the child is
saying their first words, they’re having this
protoconversations with their parents, they are having about
the same turn lengths, they’re going back and forth, there’s an expectation of this is my turn, this is your turn. This doesn’t happen in autism, but this happens if
you had a social frame. I can remember my first child, who just had our first grandchild, when she was born she was two weeks late, it was a long labor and delivery. And my wife ended up having a C-section and she spiked a temperature and, because she was a pediatrician, there’s a zillion docs in the room, and so she has her C-section,
I check that she’s okay and then go off to newborn special care to see my new daughter who
has just been delivered. And I walk in and I say,
can I hold my daughter? And of course there’s
this big baby surrounded by all the these tiny babies, and I hold her and she’s looking at me and I’m looking at her,
and we’re off an running and still are, and it’s really
amazing to see this happen. So let me ask you a couple questions. What’s more interesting this or this? I would argue that you
can’t pull yourself away from looking at the faces. And part of the reason for that is we have a tendency as
humans to seek the face. So look at all these pictures. I would think you see a
face in all of them, right? And none of these are human people. These are houses, these are bowling balls, eggplants, but isn’t it interesting? And so I say in some funny way that for people with autism,
children with autism, it’s sort of like looking at this picture. How many Nave Seals are
hidden in this picture? Take a look and then then make a guess and then I’ll show ya. A ton, but think of what
if you came into the world and you couldn’t make out
people from the surroundings? That’s gonna cause some troubles. So to put it another way, if you come into the
world with a social frame, people are the center of your world. You’re learning from them all the time, you’re focused on them all the time. You have something called Joint Attention. Your mom looks at something,
you look at something. You follow what they’re looking at. You have incidental learning,
you have the development of affect and emotion and this will help to regulate how you
interact with your parents and back and forth. You also have a strong
desire to communicate because it’s so efficient in
getting your message across. And people are the most
important things in the world. So again, in autism it’s different, and we wanna know a little bit about what we can understand about
social development early on, especially in relation to the brain, and how this affects children with autism and their interaction. So let me show you very quickly, again in typical development, there’s a very strong
attraction to face from birth, we are able to see very,
very clearly markers of this. Jamie McPartland, who
is on the faculty here, his first seminal work
was on looking at faces and discovering a very
characteristic EEG phenomenon in looking at faces, which
I’ll show you in one second. And here we go, here’s Jamie and a baby and here’s someone doing the EEG, which these are much
easier to do these days than when I first got into the field. You just wet their hair and
put on this little funny cap and you’re off and running. But the interesting thing
Jamie has pointed out is this, when you average many of these things for looking at faces, kids with autism, kids without autism, you find this, and this is called the
N170 because it’s negative and it’s 170 milliseconds out. For people looking at faces, there’s a very characteristic response. And it’s specific to faces. But look at the people with autism, it’s slower and it’s not the same. So how can we understand this? This is a study Bob
Shultz and a group of us did some years ago looking
at faces versus objects. Happily this has been
replicated many, many times now. We showed people lying
in the MRI machines, it’s magnetic, no radiation,
one button for same, one button for different. Same or different, same or
different, same or different, faces and objects. And the idea is we’re
gonna compare and contrast where does the blood flow
go for objects versus faces? And again, what we see
is for the typical folks, there’s an area called the Fusiform Gyrus, which is right about here for most of us, right under the ears on
the bottom side of the face that is a specialized
facial recognition area. For people who are
typical, that lights up, we get more blood flowing there. But not so for the people
with autism and Asperger’s. Again, these were high functioning people. Interestingly enough, we
had one of our students, one of our trainees, we had one child who had a very strong interest
in something called Pokemon. For Pokemon, that area would light up. And the Pokemon was in contrast to faces, including family member faces. So again, it’s not that
that area didn’t work, it didn’t work with faces, which tells us there’s something
different about the wiring. Which is another very interesting thing, this is a Yale undergraduate project from one of my students
in one of my classes who came to me and said he wanted to do this study on eye tracking and I said, well I don’t know. I’d seen an eye tracking
set up in the Netherlands and you had to put the
person’s head in a vice, and you had to paste things around them, and I’m like this is never gonna work for a person with autism. He said, no no, the technology
has gotten much better and Ami Klin who was then here and I managed to raise a little money to help him build this
$20,000 baseball cap. And at that point eye
tracking had not been done in autism at all, it had been
done a little bit in children for looking at eye movements in reading problems and dyslexia. It had been done in schizophrenia, looking again at eye movements, nystagmus, not so much in looking at what the person was looking at. And so we looked at
this for the first time, we took little five second
clips, very short clips from a very intense movie. It involved really only four people. It was black and white
because we, at that point, didn’t know what color was gonna do to it, and this is a nice movie
about a pleasant dinner party among four, two couples,
faculty at a New England college called Who is Afraid of Virginia Wolf? And for those of you
who have not seen this, this is a very intense
movie and these people just tear each other up, right? It’s like a Greek tragedy, but the interesting thing is we show little clips from this movie, and here you can see the lovely
Emily Volkmar Demonstrating for $10, which she
negotiated up from five. And she’s watching this, she’s got a very tiny
little camera on her hat. One camera is pointing that way, one camera is pointing this way. It’s infrared so she can’t see it, but we can actually track based on what her retina is looking at, the most sensitive part of the retina, what’s she really
focusing on in this scene. And I’m gonna show you data
from our first two people, a man with autism who is
independent and self sufficient, but who very much has autism, and a typical viewer
who’s not quite as bright. And here we go, this is about
five seconds of the movie condensed onto a single frame, okay? At the top you see a typical viewer, back and forth to the eyes, and the bottom you see
a person with autism, back and forth to the mouth. Now the interesting thing, very quickly, as a total aside, when my
daughter is doing this, we were doing this for a
German television crew, and the guys, so she did it, ’cause they showed up
and said we want a child, I was like okay I’ll get you a child, we’ll see if my daughter will do it. And they said oh fine, this is wonderful, wonderful, wonderful! Now show us you had autism, and she said, Dad what
am I supposed to do? And at this point we were
very early on in this, and I said sweetie, look at the objects. And so she immediately looks, and at this point, keep in mind, I have seen this movie 100
times to pick out the clips. What does she find in this
movie that I had never seen? See in the top corner, there’s a map of Martha’s vineyard, which I’m going to tomorrow. She had been going there all her life, I had been going since 1980, I had never seen that map. Because of course, I’m
looking at these people who are tearing each other up. And the interesting thing,
here is a scene in the movie, something scary has happened. It looks like the husband is
coming out to shoot his wife. He’s got a gun, pops
an umbrella, ha ha ha. Big joke in the room, but the
couple doesn’t know that yet. But you see where the typical viewer goes, straight to the eyes? And the person with autism
goes straight to the mouth. The trouble with this is, if your an eye person
versus a mouth person, the eye folks get about 90% of the social affective information, the mouth is much less. This actually has held up
pretty well in meta analysis. The eye business especially,
the mouth business, there’s a little more variability, but I think that’s probably more methodological than anything. But in our first series of cases, this is now a larger series of cases, you can see here, there’s no overlap in terms of looking at the eyes. There’s something Cohen’s
D, which is an estimate of the effect size, the Cohen’s D here is three point something,
it’s a whopping effect! You know usually in treatment studies, we get a 0.7, 0.8, we
think oh this was great. But this is what we’re against
in terms of the treatment. It’s the severity of the social problem. So what does all of this
mean in terms of outcome? Well the interesting thing is, as we’ve gotten more aware
of what the needs are and the special intervention challenges, but also needs to structured teaching, we have gotten more effective programs. Increased awareness has also
led to earlier diagnosis. You’re gonna hear from Kasia,
we’re are very interested in autism in very young children, and we think there is
probably now a better outcome as children have gotten earlier
and earlier interventions. I’m gonna show you some data on that. And we’re interested, because
we think here especially, we wanna integrate clinical
work with research. Now let me point out
that there’s some issues in terms of outcome. The early studies, people would
confuse with schizophrenia, that was a problem. More recently there have been
some changes in the criteria. One of the big things that
happened in this country was Public Law 94-142,
back in 1974, ’75 I think. IDEA, law said any
child with special needs who walks through the
door is entitled to a free and appropriate education. This was a big game changer. Autism was specifically mentioned, all of a sudden schools
had to provide services. Before this time, parents
could be told by the school, we can’t educate this child. Go put them in one of
those nice trading schools, which is what happened. And so kids went to institutions, they learned in institutions, but they didn’t get interventions, the kind that we know are effective. And so this all started to
change with Public Law 94-142. There’s all kinds of issues
in terms of the methodology, outcome, and if anybody’s interested we can talk about this if
we have time for questions. But I’m gonna sample some data, and I warn you, anytime somebody
warns you pay attention, I’m cherry picking data. I’m cherry picking for a good reason, I’ll tell you why in a second. But these are data from Pat Howlin and Iliana Magiati’s
review in 2019 in that book I mentioned to you from
Cambridge University Press. Good outcome means you’re out there, you’re on your own, your self sufficient. Fair outcome means you have
some reliance on other people, usually your parents, but
you’re checking in with people. So it’s semi-independent. And poor outcome is
you’re totally dependent, and we’ll have chance to talk about the really good outcomes, because we do have some kids who have amazingly good outcomes. And these are the first outcome studies, and the reason I cherry picked these, this is going from ’56 to ’74. Why do I stop at ’74? Because Public Law 94-142 kicks in. So this is the first set of
studies, there’s no mandates, people are doing the best job they can, blah blah blah, but nobody
really knows what they’re doing. But look at the number of good
outcomes, maybe averaging 5%. Okay, and poor outcome is
probably about 2/3 of cases. Now we’re gonna skip ahead, and we’re skipping ahead,
we’re jumping 15 years to let Public Law 94-142 kick in. I am going from ’89 to 2003. I stop at 2003 because 2004 we got DSM-IV, we include Asperger’s, that’s gonna make things
look better anyway. So that’s the reason for
this sort of cherry picking. But look at what’s happened with the data, the number of good outcome,
we’re talking, 20, 25%. And that’s because we’re getting more and better interventions, and
there’s good reason to think that as we continue to do this, as we provide interventions earlier, we’ll see even more of this. And I’ll talk about this again at the end. So we think several factors are involved in this change in outcome. First of all, the early
diagnosis and intervention, we know have a number of
evidence based interventions. There have been some changes
in diagnostic practice, that might account for some of this. As I showed ya, these data
were really before DSM-IV, so that wouldn’t account for most of it. Clearly, not every child gets better. We have some children,
we can’t predict who, and it frustrates the heck out of parents because a parent of a two
or three year old will say, how’s he gonna do, doc? And you have to say, I can’t tell ya. I can tell ya for groups of things, I can tell you these are
the things to look for. You will some children at
two, three, four years of age all of a sudden get it and
(imitates acceleration whoosh) take off like a rocket. And it’s amazing to
see, but you do see it. On the other hand, you see
some children in good programs who just stay there, they are like a rock. And we can’t predict really who. It’s possible as now we’re
starting to use things like EEGs and other things
to look at treatment effects, that we may get better at seeing who does and doesn’t respond to treatments. It’s a very interesting issue. We have more and better supports. I mentioned, unfortunately, there’s issues of matching children to treatments. You have some children who might
be great candidates for ABA but they’re in TEACCH program. So you’ve got a lovely
program, but it’s not ABA. And you might have some
kids who’d do better in TEACCH program, but
they’re in ABA program. So again, this issue of
matching kids and treatments is very complicated. There’s a very good book by Peter Doehring called Autism Across America, where he talks about
some of these paradoxes. The interventions from ’56 to 1980 were basically unstructured treatments. We had some drug treatments, not so many. After Public Law 94-142, there’s all of a sudden great interest. There was a report from the
National Research Council called Educating Children
with Autism that came out. We’re actually just redoing this, revisiting Educating Children with Autism. This book from the
National Research Council came out and said,
basically, educating children with autism is important,
we see important changes, it recommended 25 hours of treatment before kids went to preschool,
before kids went to school. So it was a big game changer, there 10 programs around the country that had at least one published study that showed that their program worked. But again, after that, there’s been really an explosion of evidence based treatments and the programs have gotten much better as well as the evaluation of them. So we have more and
more books on evaluating evidence based treatments, there are practice guidelines out there. There’s more stuff, we know that there are all kinds of approaches to teaching, there are some programs like
TEACCH that are more eclectic, and we have ABA, Applied
Behavior Analysis, we have some developmental programs, like Sally Rogers, Connie Kasari, that are more focused on fostering certain developmental areas and skills. And then finally we have pivotal response, which is an interesting combination of behavioral and developmental,
and they pick certain areas that they see are pivotal
for enhancing development and they focus very much on those, but in kind of a more
naturalistic, ecological way. So the gaps, intervention research, and especially for older individuals, there’s almost no work. There was a paper some years ago, Joe Pivot and some colleagues
that basically said there’s no papers on aging in autism. And if you read that paper,
you mastered the literature. That’s no longer the case. We now have for the first time
some work going on on this. It’s a very interesting area, but there’s very limited data. We’re generalizing a lot from our work with children and adolescents to our work with adults
and older individuals. There’s no data looking at really older, very little data looking at
older individuals and autism. For example, seizures. We assume they may be at
increased risk for seizure. I have a client who I took
care of in a group home who is in her 60s and she
had her first seizure, and I got a call from
the ER up in Dartmouth Where she was at the summer
place that they go to. And they said that she had the seizure and we agreed that she
didn’t need to be treated. She had only one seizure,
she wasn’t driving equipment, blah blah blah, and he said okay, as soon as she starts to talk
I’ll release her form the ER. I said, well you know I’ve
known the lady for 25 years and she’s never said a word to me, so. (audience laughing) Get ready for the long haul. But it’s interesting we have no data to show what the rates of seizures are. If you look at something
like Downs Syndrome, it’s very different. There’s a lot of interest
in Down Syndrome aging because of leukemia,
because of Alzheimer’s. And again, we just don’t
know in autism, sadly. Particularly better metrics, things like looking at more
neurobiological things, EEG, eye tracking things,
even to could have something like turning response to prosody or voice that are much better than
our current approaches. Our current approaches to screening, I’m sorry to say, are
not horribly effective. There was some data from Norway that shows that the most commonly used instrument works about as well as flipping a coin. And the trouble is it over picks
up developmentally disabled and it under picks up for
more abled kids with autism. Also just to highlight this, if you look, the gray bars are papers being published in autism, the black bars are papers
on intervention in autism. Intervention studies
are the hardest to do, they’re the hardest to get funded, the hardest to get published. If you’ve ever been a reviewer or will be a reviewer in the future and you see an intervention
study come through, people are out, they are gunning for it. Somebody in the review panel will say, oh they didn’t use my instrument. Oh, they used Joe’s instrument. And it all goes to heck after that because people are involved
and they’ll find some flaw, it’s like an oriental rug. It always has to have
some problem with it, and that usually kills it. The effects have been most effective when they’ve mandated,
forced people really to do a single study,
and that has actually been more effective than other things. Social policy issues, I
mentioned it’s very interesting. We have essentially experiments going on in all 50 states looking at
how autism is provided services starting in young childhood and schools. But nobody’s really
considering what that is. It varies tremendously. I’ll sometimes be in the
position of advising people in this state to move
from one town to another because they can get better services. Other places I will say,
move out of such and such and move across the river,
in a different state, you get much better services. And it’s a paradox and
nobody’s looked at it, and I really can’t say,
there’s no good reason why. As I mentioned, there’s a
good book by Peter Doehring called Autism America that
kind of takes up this problem. It’s also been to some extent a problem translating research into practice. As you know, anytime you
take a research intervention out into the field, every single step you’re gonna get attrition
in terms of how effective the practitioners are or
how well trained they are, how faithful they are to the
protocol, blah blah blah. But I think the other problem is, that as researchers we
need to do a better job of taking what we know from research, explaining it to people
in teachers in ways that they can find
helpful and approachable. If you look at the worldwide web, I checked last night, there
were over 125 million hits if you type autism into Google. If you can imagine if
you’re a parent doing that, what you’re gonna be hit with. It’s a lot, even among
the top 100 websites, and there are several
published papers on this, about 1/3 of them are
gonna promise you a cure, ask for money. Again, it’s a problem that
parents really need help with finding good resources. Oh and I mentioned the online course, this course, as you heard, this
lecture is gonna be online. It’s gotten a very substantial viewing, which is great, we update it periodically. But having good resources like that available for free is an important thing. Let me just mention very quickly some general principles of the interaction of research with clinical work. I had as a patient a fairly
high functioning young man with several interests
who came to me saying he wanted a girlfriend. We got him two and a half years, we got him a girlfriend, we got
them to go on a double date, we did a whole package of
stuff with them, it was great. And he came into my office
every day and he sat there, didn’t look at me usually,
and we would talk. And about six months into it, I said you know, Joe, I want you
to pretend I’m a girl. And he looked at me, which was unusual. He looked at me and said, Dr. Volkmar, I can’t pretend you’re a girl. You’ve got a mustache, you’ve got white hair for christ’s sake. (audience laughing) And he said, why would I do that? I said, Joe, if you can do it, I will tell you what the girl is thinking. And he looked at me with big eyes, you can do that?
(audience laughing) I said, yes. Anyway, after every
session he was going down and writing down rules. Well, rule 157, Volkmar
says don’t pick your nose, girls don’t like it.
(audience laughing) And but he, we got him a girlfriend, we got him to start a
chess club at school, he got some friends, he
went on a double date with one of the guys from the chess club. And I said Joe, we’re
gonna take you to Macy’s to get you some new clothes
’cause you look like a geek. And the kid looks at me
and he says, Dr. Volkmar, do I look like a geek? And I said, yeah you look like a geek. And doing psychotherapy in this populace is very interesting. And he said, well how
can I look different? And I said Joe, I’m
gonna tell you something that’s gonna really freak you out. And he said, what’s that? And I said see my scissors over there? We’re gonna cut that top
button off of your shirt. Joe came in every time, no tie, but all the buttons are buttoned, right? So, you’ll forgive my saying, he looks like a Trailing Missionary. And he looks very different
from his classmates. And he said, oh I can’t do that. I’ll deface my shirt, my mom will kill me. And I said, Joe I’m
willing to bet $10, right? $10 that your mom’s gonna like it. Kids are gonna comment
that you look different. And so we did it, he came back
in the next time with $10. He says, I don’t know how you knew that. But things like that, but
again he’s very successfully enrolled so far, knock on wood,
in a college up in Boston. But the interesting
reason for telling this is while I was working with him,
he had my cell phone number, he also had an interest
among other things in the interchanges on interstate 95, you know South Carolina,
exit 63 is having problems at blah blah blah, and subways. He was interested in subways. And I had to cancel one meeting because I had to be in Washington
for working on something for the National Research Council, and it was horrible weather and the train stopped a couple times. And I checked and called that the meeting was actually gonna happen
’cause they were predicting a blizzard in Washington, which
just means it’s impossible. So I get there, there’s
six inches of snow, the city is shut down, you have to pay $50 just to get into a cab, and I
slip and slide to the hotel. The next morning there’s no cabs, I have to go to the subway. I am getting on the
redline at DuPont Circle, having fought my way through the snow, fought my way through all the people, it’s like the Tokyo
subways, pawing my way in, I get in the subway door, the door closes. I get a text from my patient, Doctor Volkmar, don’t take the redline. (audience laughing) And he was absolutely right,
10 minutes later is stopped. And there was some debris
on the track or something. But anyway, it’s interesting,
every now and then you see these funny things that happen. And lastly, quickly to
end with a happy note, Jamie McPartland has joined
me in teaching this class, we have done it now for over 30 years, and these Yale students who have a seminar and they have lectures, but
then they go out and work, and the schools, Chapel
Haven and Benhaven, with people with Autism Spectrum Disorder. And it’s an unusual course for Yale, and as I mention, it’s online. But to get into the course, ’cause it’s limited to about 20 kids, they have to write me a little essay and the essay is where they are at Yale, why they’re taking the
course, et cetera, et cetera, and they send it in. And I have a teaching fellow, and I say to teaching fellow,
okay this is the deal, first take the Seniors,
then take the Juniors, then take the Sophmores,
then take the Freshmen. But, if anybody says they’re
a sibling, take them. And very year I’ll have a couple
of people who are siblings. And I say, whatever else is true, they should get something
of being a sibling. And so I always take them, and a couple years ago now,
my teaching fellow said, you know what, Dr. Volkmar, this is not quite what you said. But I want you to read
this student’s essay, and I wanna take this because I wanna be a better advocate for people with autism, because I have autism and I’ve never told anybody at Yale that. And so I said, okay, the kid’s in. And I got to know him and yeah, sure enough, I mean I’m dealing
with him as a professor, not as a clinician, but I can tell ya, he sure had autism. But it’s very interesting, we
have more and more students. Last I heard, we have
five students at Yale at Southern where I
also work part time now, we have over I think 45
students who have identified, which means we probably have double that. So more and more kids
are going to college, it’s creating some interesting challenges, but that’s a whole different topic, and we’re having a conference,
as you hear, this Fall to address these transitional issues. But the good news is more and more people are doing better and better, and we have to now be able
to gear up to service them. So that being said, the take home lesson, if you’ve met one person with autism, you’ve met one person with autism. And so keep that in mind, and since this is Yale, I’d hope as a bulldog I
haven’t put you to sleep. (audience laughing) And finally, here’s some references. I’ll put number I up just for a minute and then I’ll go to number II, and then we’ll be all done
and we can stop the filming. And we have a few minutes for questions? Whoops, okay all done. Thank you very much.
(audience applauding) (chiming music)

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