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SEPTEMBER 10, 2013 VCU
MUCH ADO ABOUT DSM-V
Services Provided By: Caption First, Inc.
>> Hello. My name is Dr. Carol Schall. I'm the Director of Technical Assistance for the
Virginia Commonwealth University Autism Center for
Excellence. Today, I'm going to be talking about the changes
in the diagnostic criteria for autism spectrum disorder from the Diagnostic and Statistical
Manual on Mental Disorders Fifth Edition. We refer to
this as DSM-V. This particular edition has had much controversy surrounding it regarding
these changes.
Today, we hope to provide you with information so you can learn more about the changes
related to the definition of autism in this Diagnostic and Statistical Manual.
First I'd like to review why autism is such a big deal. In fact, so often, when kids go
to school and they have an autism spectrum disorder, they
frequently appear at the door and look like they are
carrying this lunch with the tag autism on the front of it.
In fact, it is difficult frequently to figure out how best to support an individual with
autism in a public school setting.
Our goal is to figure out what that child needs regardless of what the label is and
to provide them with the best educational services we can.
In order to do that though, we need to understand a little
more about the child and their needs. To that end, the diagnosis of autism can be
helpful to the school teams who are trying to meet
those child's needs. Autism is such a big deal also because it has increased greatly
over the last 20 or so years. In fact, in 1990 the reported incidence
of autism was at about 1 in 4 to 5,000 children. Today, that statistic is significantly higher
and represents slightly over 1 percent of the childhood
population of children going to school today. As we look at the incidence of autism, we
have to ask the question: Why is that increase occurring? There are some factors that have
influenced the increase in autism. In fact, there is no
doubt that there is an increased awareness of the disorder.
15, 20 years ago when I started working with individuals with autism, and I described my
job to others, they would frequently say, as I said
I'm working with autistic children, they would think I was
leading a VR, maybe that I came from New York and asked me if I like to paint or draw, thinking
I meant to say artistic children. In fact, what
happened since that time is that we see that almost
everyone knows about autism. Almost everyone that we interact with is aware
of the disorder. When I meet people now and say that I work with children with autism,
if they happen to be parents of young children, that
frequently means that they ask me questions about whether or not their child has autism.
Everyone is worried about this disorder. They are even more worried about possible causes.
That would be a discussion for another webcast. Returning to our slides, the other issue that
has occurred during this time is what we refer to as
diagnostic substitution. That is, that children who might have 20 or 30 years ago been diagnosed
as having an intellectual disability are today
more rightfully diagnosed as having a autism spectrum
disorder. That could account for some of the increase.
Finally, when the DSM, the Diagnostic and Statistical Manual of Mental Disorder Fourth
Edition came out, they added the idea of Asperger's
disorder. Asperger's disorder refers to a different end of
the spectrum of autism. Prior to DSM-IV, we only understood more classic forms of autism,
whereas today, we talk about autism in the context
of a spectrum. The question though is there an epidemic of
autism remains unanswered. Scientists believe that
the majority of the increase can be attributed to the first three factors that we just discussed,
that is, increased awareness so we are recognizing
more mild forms of the disorder, diagnostic substitution,
and widening the spectrum. However, it is possible that there is more
autism when we look at the children that we are
serving today compared to the children that we might have served 20 or 30 years ago.
This question, however, is very difficult to answer, using a research methodology, because
we don't have time machines. We can't go back
to 1980 and use today's criteria to diagnose children
who might have qualified for services then. Nevertheless autism because of its increased
frequency is in fact a public health concern, from
the perspective of meeting the needs of individuals with disabilities.
I don't mean that this is an epidemic in the sense that someone can catch autism. You cannot
catch autism like you might catch a cold or the flu.
But, we as individuals who serve children have to be aware of this increased incidence
of autism, and we have to develop school programs that
will meet the needs of this very specialized group.
In fact, the whole point of dissecting a label or diagnosis for a child is to ensure that
they receive appropriate educational services.
When we are talking about autism, that really means that we understand the child and their
unique needs very well, so that when we make educational decisions, and plan for their
educational programs, we are making those decisions and
developing those plans with the child in mind. The DSM-V is here. The DSM-V was published
and released in May of 2013. You can look at the website, DSM-V.org, to
see more information about the Diagnostic and
Statistical Manual. In fact, as you go to the website you will see that they have a
.pdf describing their changes to the autism spectrum disorder
label and how that might impact individuals. At this point we frankly don't know. The actual
impact of the changes in the DSM-V have yet to
be realized, because we don't have enough practice in using it in a clinical setting
and in and educational setting.
At this point, we don't know frankly what the changes will be. We can speculate, but
for right now, what we do know is understanding those
changes will help us meet the needs of children. To further describe the differences between
the Diagnostic and Statistical Manual fourth edition
text revision, which is on the left-hand side of your screen, and the Diagnostic and Statistical
Manual of mental disorders fifth edition, which is
on the right side of the screen, we need to first recognize
that there was a change in the way symptoms were described.
In the DSM-IV text revision or TR on the left side of your screen, you can see there were
three key symptom patterns. Children, in order to
qualify for the diagnosis of autism under this Diagnostic
and Statistical Manual system, had to meet characteristics in each of those three symptom
categories or symptom patterns.
In the DSM-V, the committee decided to combine communication and social interaction into
one category, specifically social communication.
So the first major change that we see is the move from three symptom categories to two.
In addition, there was an expansion of the behavior
category in the DSM-V to include sensory disorders. The changes in the total DSM system are summarized
on this slide. Most specifically, the disorder known as Rett's disorder which is
a genetic disorder that can be diagnosed with a blood test
has been removed from the Diagnostic and Statistical Manual system.
The reason for that is that the Diagnostic and Statistical Manual identifies psychological
behavioral and emotional problems. It does not list medical diagnoses.
Given the fact that Rett's disorder can be identified with a blood test, it is not considered
a mental disorder per se.
It is in fact a genetic disorder. There is no doubt that there are genetic syndromes
in the DSM-V. But the DSM-V is seeking to describe the behavioral
patterns of disorders and syndromes that might impact people.
Secondly, there has been a major change in the diagnoses under autism spectrum disorder.
In the DSM-IV, the category under which someone
might be diagnosed with autism was termed pervasive developmental disorder.
And that category included five disorders. Among those were Rett's disorder which we
just discussed, then we saw pervasive developmental
disorder not otherwise specified, Asperger's disorder and childhood disintegrative disorder.
All of these now are simply termed autism spectrum
disorder. In a few moments, we will review how we might
characterize the different types of autism within
the DSM system as it's now presented in DSM-V. However, what we do see is that instead of
having five distinct disorders, we now have one
disorder called autism spectrum disorder, with an array of categories of symptoms, an
array of potential impacts of those symptoms on the
individual who is being diagnosed. As I mentioned earlier, three symptom categories
become two, when social interaction and communication are merged to become social
communication. In fact, there is some logic behind this change.
When someone says hello to another individual, they are clearly using both communication
and social interaction. In many cases, it's very difficult to
separate those two and make them individual. Certainly, if I was sitting in a room by myself,
talking to myself, I would be communicating without socially interacting. But then again
I might need services myself. Finally, the DSM-V and I think a very positive
move added unusual sensory behavior to the criteria for autism. We will review that in
just a moment. On this slide what you see are the specific
criteria under each of the two symptom categories. Let's first discuss social communication.
In order for a child with autism to qualify for the autism
diagnosis, they have to meet all three criteria under the social communication symptom category.
In social reciprocity characteristic area, this symptom pattern ranges from a total lack
of initiation of social interaction where an individual
might show those very classic signs of autism, where they
refuse to even acknowledge or interact with someone else, all the way to individuals who
have extreme difficulty engaging in normal back
and forth conversation. So when you look at this, this category of
symptoms really captures what we mean when we talk
about spectrum. Autism is a spectrum meaning that individuals with autism might not be
like each other. We might have an individual with autism
who talks an awful lot, but has difficulty listening or
engaging in meaningful conversation. Likewise, we might meet an individual with
autism who doesn't engage in much conversation or
even seek to interact with others all together. In fact, recently I was in a meeting with
a young man who kept simply walking out of the
meeting, because he didn't want to interact with the people in the meeting. So we see
this idea of a spectrum meaning that some individuals have
very significant impacts as a result of autism, and
refuse social interaction all together, while others might seek social interaction but have
extreme difficulty engaging in that smoothly.
The next category of symptoms in this social communication category is nonverbal
communication. Again, we see a range from those who use no nonverbal communication or
lack facial expression, all the way to those who
have difficulty integrating eye contact, communication, and gaze, to indicate what the meaning of
what they are talking about. So this again represents the spectrum, where
we see individuals who have extreme difficulty with nonverbal communication, and fail to
use facial expression whatsoever, to those who have
poorly integrated nonverbal communication and might smile long after a joke is told,
or might look sad long after they hear disappointing news.
Finally, we see that individuals with autism have difficulty in and deficits when developing
and maintaining relationships, specifically relationships
with their age reference peers. We again see the difficulties ranging from
those who appear to have no interest in interacting with people whatsoever, or making friendships,
to those who have difficulty adjusting their behavior
to suit the situation. Some individuals appear younger than they
actually are by age just by virtue of not knowing
what is expected in certain social characteristics, and in social, certain social settings.
Under the second category of characteristics, restricted repetitive behavior, individuals
with autism must meet two of the four criteria.
In this area, the very first criteria is repetitive speech. This also includes motor movement
or repetitive or stereo typed use of objects.
This could be simple motor movement, such as flapping
hands or pacing, to stereotypies that might include consistently locking and unlocking
doors or touching a chair three times, or trolling
where I walk. This could also include echolalia or repetitive
use of objects. It also finally includes idiosyncratic phrases.
One of the young men that I worked with years and
years ago would frequently sing Sesame Street songs, but interestingly he would sing them
at just the right moment.
He picked up a blue bird once that he was playing with in a group of toys, he was a
young man below the age of 7, and he put the blue bird
on his shoulders and sang, here is Mr. Blue bird on my
shoulder. (singing).
Well, he was trying to play with the bird, didn't understand how to play, and so he used
this idiosyncratic phrase to characterize what
was happening. We also see in the second set of characteristics
an excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior,
or an excessive resistance to change. These routines really frequently act as a
barrier to the person being fully included and fully able
to be successful in their every day activities. Next we see highly restricted and fixated
interests that are abnormal in intensity or focus. For
example, some individuals with autism have an inordinate affection for, for example,
information about trains. I once met a first grader who
could tell me all about the train system in Italy, although
he had never been to Italy. His interests meant that everything he talked
about, everything he dreamed about, every time he
had free time in school, he was drawing Italian trains, he was drawing maps of Italian train
lines. He was listing the names of the lines. It was
such a restricted interest that he knew everything there was
to know about the Italian train system. Given the fact that he lived in Virginia,
that was not very functional knowledge. He would never
in Virginia take an Italian train anywhere. So this interest was really restricted, and
did not translate into any real functional activity or any real
vocational activity. Finally as I mentioned earlier, this is a
symptom pattern where we see the hypo or hyper reactivity to sensory input. This includes
an apparent indifference to pain, heat or cold. Some
parents will talk about their children with autism and how they will walk out on a zero
degree day without a jacket and not appear to show any
pain whatsoever, or even notice that it's a little chilly.
We also see an adverse response to certain sounds, textures, excessive smelling of objects
or items, excessive touching of objects or items,
and fascination with lights. This is the first time that we have seen this
set of symptoms included in the autism spectrum diagnostic array. I think it's important to
note that it has been long known that individuals with
autism do have differences as it relates to their sensory interaction and their sensory
input that they receive, and so now including this as a symptom
category, it doesn't mean that every child with
autism has to display this. Remember in this B category, individuals with
autism only have to meet two of the four criteria. It is an important point to note that the
history of the child's diagnosis plays a very important
role in any current diagnostic findings. As we understand autism right now, the majority
of people have this disorder for their lifetime. So if a child demonstrated the most salient
characteristics of autism at the age of 4, but now is a
12-year-old, are not demonstrating those characteristics as much, clinicians can feel comfortable in
saying that the child still has autism. Autism doesn't go away.
The symptoms and patterns of symptoms may ebb and flow and in fact, children do frequently
show that they are able to cope with changes over time.
And they may have learned behaviors. For example, an individual who may be as late to talk may
in fact learn to use words very effectively, but it is almost like they are using the words
as if they are fill in the blank.
One young man that I met whenever he was asking a question, would always start it with the
phrase, may I please? And then he would ask for the thing by saying, may I please have
blank, please. So for example, he would say something like
may I please have lights off, please. Instead of saying,
would you please turn off the lights? Every single question that he had was always phrased
that way. May I please have blank, please.
May I please have quiet, please. May I please have hug, please. May I please have -- you
can fill in the blank forever. That is how he asked
every question. He had learned to ask questions, so he
might not have showed the degree of severity that he did previously. But there was no doubt
that he still had autism.
Again, clinicians can rest assured that if there is a history of autism in the child's
diagnoses, that they can continue to use that history as a
current diagnostic finding. The final criteria that must be met in order
for an individual to qualify for an autism spectrum
disorder are on the slide before you right now.
The first criteria here under letter C is important to note. That is, symptoms must
be present in the early developmental period. In previous
editions of the DSM system, that usually had an age,
prior to age 3. Well, there is no longer an age noted.
However, it is important to note that an individual may demonstrate those symptoms early on
but those symptoms may not be fully manifest until the social requirements or social demands
exceed their capacity to display them. For example, consider the preschooler who
is having difficulty in preschool and everyone thinks,
that is just him. He is just a little lagging in terms of his social skills.
By the time he gets to third grade, if he is still showing those difficulties and if
he is showing all other symptom categories in the autism spectrum
disorder category, he may in fact have an autism
spectrum disorder. The diagnosis may not occur until third grade,
but the symptoms were present when he was much younger in the toddler age.
It is important to note that the symptoms cause a clinically significant impairment
in the person's life. This means that although you are listening
to this today, you may be thinking to yourself, I have
those characteristics. I think I may have autism. Unless there is a clinical significant
challenge that you face in relationship to maintaining relationships
with others, maintaining a job or going to school
successfully, or organizing your life so that you can cope with changes in your life, you
probably don't have autism.
Some people have asked me, do I think Bill Gates has autism. Frankly, I don't know. I
don't know Bill Gates. I don't have an opinion one way
or the other. I do know, however, that he is doing pretty
well. He's got a lot of money, certainly a lot more
money than I do. If he does have autism, he clearly has learned to cope quite effectively
with it. In fact, you might argue that that may not
be a clinically significant impact. Finally, it's important to say that a child
has autism if the symptoms that they are displaying are
not better explained by intellectual disability or global developmental delay.
The one exception here is when there is a comorbidity of intellectual disability. Comorbidity
simply means having two co-occurring diagnoses at the same time. In fact, it is frequently
the case that individuals with autism have co-occurring
diagnoses. If a individual who has an intellectual disability,
but is actually communicating or interacting with
others at a lower rate than as indicated by their abilities, with their intellectual disability,
in fact, they may also have autism as well.
I think where this is most difficult to sort is when we have individuals who have very
very significant intellectual developmental and
multiple disabilities. It may be difficult to sort out what is
autism and what is the significant disabilities that the individual is facing.
There is one more, I think, most important change to be DSM-V system that did not exist
in any prior DSMs. That is that now, instead of identifying
someone as having Asperger's disorder or pervasive developmental disorder not otherwise
specified, you as a clinician or you as a parent may
hear about children referred to as requiring support or level 1, requiring substantial
support, level 2, or requiring very substantial support, level
3. In each of these areas, individuals could,
for example, require support when it comes to social
communication, but require very substantial support when it comes to restrictive and repetitive
behaviors. There is a lot of detail in the DSM-V that
describes each of these categories, and they range from
at level 1 as it relates to social communication, individuals who have a social communication
deficit when supports are not in place, all the way
to individuals who have severe impairments related to
social communication. So by being able to note the level of support
required clinicians and families can begin to talk
meaningfully about the types of programming and the types of supports that an individual
might need in their educational and future programming.
As it relates to restricted repetitive behavior, we see that same range. Individuals who might
be at level 1 and require some support might
have some inflexibility of behavior. That inflexibility might
cause significant interference with functioning in one or more contexts. The range goes all
the way to the level 3, where there are extreme difficulties
coping with change, coping with demands to restrict
the repetitive behavior, and marked interfering in all spheres.
Again, we see the range from these symptoms interfering with the person's life in a couple
settings to all settings causing significant disruption.
Again by being able to note the types of support that the individual requires, the team can
begin to decide how best to support that individual
in educational programming. There is also a new diagnosis in the DSM-V,
that was not there prior. This diagnosis is referred to
as social pragmatic communication disorder. Not much is known about this. But this would
be a diagnosis that might account for those individuals who have significant impacts in
social communication, but do not evidence repetitive and
restricted behaviors. I mention it because it may have an impact on the number of children
who might in the future be identified with an
ASD, particularly those individuals who have a more mild
pattern of interactions with others. I think it is important in the context of
this lecture to take a moment to talk about medical
diagnosis versus educational eligibility. In fact, these two frequently are serving
different purposes. When a doctor, a psychiatrist or psychologist
evaluates the child for autism spectrum disorder, their question is, what is the disorder that
is present that best explains the trouble that the child is
having in all contexts in their life. That medical diagnosis then becomes a label.
The educational world, however, school psychologists, educational diagnosticians
and educational teams don't diagnose children. Instead,
the role of the educational team is to determine whether or not a child has a disability that
interferes with their ability to learn.
So the question is not one of diagnosis, but one of eligibility criteria.
Does the child meet the criteria to be considered a person with a disability under the Individuals
With Disabilities Education Act. Those are two different processes, and yet
they are often confused. Families often think that when they are sitting
down with the school team, that the school team
is in charge of diagnosing the child in school. That is not the case.
Likewise, doctors often think that by virtue of giving a child a diagnosis, that means
that child should now receive services from the educational
system. Again, that is not necessarily the case.
In order for a child to receive services under the individuals with disabilities education
act, they must be found eligible by meeting the requirements
of 13 different categories or labels. As we look at how does the DSM-V impact educational
eligibility, the first area we might look to
is alignment. In the previous edition of the DSM-IV, what
we saw was that the category was pervasive developmental disorder -- excuse me, pervasive
developmental disorder, and so the educational category in the Individuals With Disabilities
Education Act was termed autism. Some school divisions
interpreted that term autism very very strictly, saying that only a person who actually has
the diagnosis, the actual diagnosis of autism
could be served under that category under IDEA.
And yet, many individuals have other forms of the disorder under the DSM-IV system, they
might have had the label of Asperger's disorder
or pervasive developmental disorder not otherwise specified. They could also be served under
the category of autism in the educational system.
By having one category now, autism spectrum disorder in the DSM-V and one category, autism,
in the Individuals With Disabilities Education Act, we may see an alignment of those two
different ways of viewing the needs of a child.
It is also to note that historical diagnoses plays a role in the DSM-V system. If the child
was found to be a child with autism at the age of 3
and they continue to have autism or display the symptoms of
autism at the age of 6, 9 and 12, because of that history, there is no reason at the
age of 15 at one of the triennial eligibility determination hearings
to revise that diagnoses. The question is not what label does the child
have, but what services would give that child the
free and appropriate public education that they have the right to.
Finally, the DSM-V is meant to increase the specificity of the autism diagnosis. Eventually,
that increased specificity will assist educational
teams in meeting the needs of individuals with autism.
Currently, however, the DSM-V really is not going to have much impact on the educational
system. The reason for this is that the definition of autism in the Individuals With Disabilities
Education Act is set in the law itself. The DSM-V has not changed the law. Only a
literal act of congress would change the law to
reflect a new definition for autism. So at this point the DSM-V does not really
play a role in determining eligibility in terms of a child's
needs in the school system. The Individuals With Disabilities Education Act does that.
At the same time, it is important to note that for those educational and psychological
diagnosticians that there are no tools currently calibrated to the DSM-V criteria.
The tools that we currently have that we use to screen or identify children with autism
were all developed under the auspices and the requirements
of the DSM-IV system. So again, as we look at how do we best serve
children with autism in our current context, DSM-V
is not really going to have that much of an impact at this point.
Here are a number of different tools that individuals have frequently used to identify
autism. As I mentioned, all of these are based on the DSM-IV
system. There are other critical areas that need assessment
when serving a child with autism. If a child with autism has a functional behavior problem,
then we need a Functional Behavior Assessment or an
FBA. Person-centered planning is critical, particularly as that child moves from childhood
to adolescence to adulthood. We need to teach
individuals with autism how to make choices about
their futures and their careers. We also need to keep an eye on functional
program planning. That is, can individuals with
autism as they graduate from high school communicate, cross the street, drive a car, use an ATM
machine, access services in the community? Can they take advantage of recreation in the
community? Those every day functional skills are significantly
impacted in this disorder. It's important not to
just understand a child's reading level, but how that child uses reading in their every
day lives in their community to access information.
Finally, it is absolutely critical to consider academic assessment and curriculum planning.
As we think about assessment and eligibility, we
should not think that our job is done once we know what a
child has, because no child with autism is alike.
No individual can have the same program as any other individual. This is a symptom pattern
of behaviors. This is not like an infection,
where if you just get the right antibiotic you will be cured.
Instead, these are patterns of behaviors that we tend to shape over time to be more functional
in the context in which the child lives, goes to
school, and interacts with others. What I'm really saying is that when we consider
a child or an adolescent in our current school system, we have to remember that that child's
life is comprised of their academic needs. They have intense social needs. In fact, as
the parent of a 15-year-old without a disability, I can
attest that the social needs are sometimes more important than their academic needs.
They have their families and their families' needs to meet that child and to help that
child grow and become the productive citizen that they
dream. They have their own behavioral needs as it
relates to how to cope with the world and how to get
along with others. There is no doubt that every human has physical needs including children
with autism. As we think about that child, we must
remember their physical needs. Finally, we are doing all of this work in
school, so that children leave us with a happy and hopeful
future. So we have to consider their future needs. When you think about the child in terms
of their needs and in terms of the supports that will
help them advance in school, the label is the smallest
thing that we would be talking about in a meeting.
The most important things to be talking about are the rest of the circles on the slide right
now. More important than the tools or the diagnosis
or the labels are the questions that we attempt to
answer as we come together as team members to meet a child's educational, social and
future needs. So I have a number of questions on the slides
that follow, such as: What should the teacher supporting the student do to ensure that student's
academic success? In fact, that is a much more critical question
than what label should we put on a student. When
we know that a student has a label, that is really all we know. We don't know what to
do. But if we understand what teachers should
do to help this child learn, that is a much more
valuable use of our precious time as we are meeting to discuss how best to help a child.
We also have to think about classroom supports. Accommodations and modifications that may
assist that student in learning, the curriculum needs that the student demonstrates, related
services, related to physical therapy, speech therapy
or occupational therapy, long-term projects in terms of
the child's academic career, especially as it relates to post-secondary education and
career planning. And then supports and services that will result
in the greatest independence and achievement. When you consider those questions, again diagnostic
labels are the smallest part of that discussion. If you are trying to figure out
how best to guide a child toward a future where they work,
live and play in their home community, knowing that a child has autism doesn't really help
you figure out what to do.
But, because of the way the Individuals With Disabilities Education Act is written, labels
are the gateway. It is almost like the snakes and
ladders game where some years you move up and some
years you fall down. In order to even get in the door, you frequently need that ASD
label so that you qualify for services, so that you hit more
of the ladders than you do the snakes. There are some complications related to autism
spectrum disorder and educational eligibility. Specifically it is the educational category
versus the DSM. The DSM really is a psychological mental health or medical diagnostic manual.
And so when we look at that DSM category, we will still
see individuals who have those older diagnoses. We will still see individuals who have a diagnoses
of PDD and OS or a individual who has a diagnosis
of Asperger's. We have to be aware of that and
understand that today we would use the term autism spectrum disorder.
We have to be aware of comorbidity, that while a child has autism, they may also have other
disabilities, that impact their ability to be fully included and access the general education
curriculum. For example, an individual who has autism
and an intellectual disability has dual needs that need
to be met. Another individual who has autism and is also gifted has a number of needs that
need to be met.
We have to consider the family's history and their ability to advocate for their child
and meet their child's needs at home. Then finally
we have to consider the secondary characteristics which
include interfering behaviors and mental health diagnoses that may complicate the life of
the individual with autism.
I have a number of points on this slide that I want to make by noting that these are true
or false. Previously, I had these animated to show whether
they were true or false. But we ran into some technical glitches.
Forgive me while I read through these and note which ones are true and which ones are
false. The first one, only a medical doctor can identify
a child with a ASD, this is false. If a school team
comes together and says that a child regardless of what their medical diagnosis is, qualifies
for the individuals with disabilities education act
for an individualized education plan as a child with autism,
they are fully empowered to do that. Autism is included in the IDEA array of possible
disabilities, and school psychologists are trained
and empowered to identify children as eligible under that category.
The next statement, the only way to identify a child with ASD is to give an ADOS or autism
diagnostic observation schedule, this is also false. Sometimes children already come in
when being identified as a child with autism. Other times
it is very clear to the team that this is what the child
has, and so there is no need to use an ADOS. The ADOS does not necessarily point you toward
educational supports or what to do to assist a child to learn to read. It can clarify the
important aspects of the diagnosis that might help you
understand the child, but it may not help you
understand how best to educate a child. All students with ASD need an ADOS, that is
an autism diagnostic observation schedule, at every
eligibility to maintain the label. This is also false.
The requirements were repeated triennial eligibility meetings and eligibility assessments are
contained in the individuals with disabilities education act and are not determined by disabilities.
Instead they are determined by the eligibility team, that would frequently start with questions
and then use assessments to assist them to answer
those questions. The ADOS or the autism diagnostic observation
schedule is a gold standard in autism diagnosis. This is true. At this point in our history,
this is the best tool to identify a child with autism.
It is better to wait until a young child is 8 or 9 before talking about autism. This is
false. The best time for us to identify and then intervene
for a child with autism is before the age of 2, if we can.
Certainly by the age of 3. We actually have tools that assist us in making
those diagnoses and determinations early on. We
are most effective when we can provide early intervention between the ages of 3 and 6.
In fact, this gets to the final point on this slide, that some have said to me that autism
is too stigmatizing a label for a child under the
age of 5. This is false. What is stigmatizing is when a 4-year-old
is playing in the sandbox repeatedly letting the sand fall
through their fingers and another child comes over to play with them and that 4-year-old
runs screaming from the other child for fear of
social interaction. That is far more stigmatizing than any report
any psychologist would ever make. We empower parents, educational teams, and
care providers and support providers when we
identify children with disabilities and develop plans to meet their needs.
The next point on the next slide Asperger's disorder is really an emotional disturbance,
again this is false. If you still have children who are
being identified as having Asperger's disorder or if you
currently have children who were previously identified with Asperger's disorder they qualify
under autism spectrum disorder, better than they
do under any other disability. It doesn't matter, the next point, what label
a child has, as long as the child gets appropriate services. This one is basically true. No doubt
the label can help a family become empowered and
connect with support. There is no doubt that the label can help
the team understand the child. So to that end, a label
may be helpful. But what is more helpful is understanding the child themselves. I've frequently
said to parents, you don't want an expert in autism.
You want an expert in your child. And that is worth
far more than knowledge in autism. Final point on this slide, there are too many
children with autism in our school system so we
should stop identifying them as such. This is controversial, because in fact, if a child
has autism, whether you identify them or not doesn't change
the circumstances of their needs or the characteristics that they display in school.
If you call them something else, they are still there. They still have the needs that
they came to school with that morning.
Parents just want the label for the benefits that they get. While I will acknowledge that
there are some parents who see labels as an opportunity
to access public benefits, by and large this is a false
statement. Most families would be far happier to have
children who are able to fully participate in life and
become independent, contributing members to society. In fact, that is what all parents
of children with autism want for their children, to have
the most independent life where they can contribute and
find their own corner of the sky. Parents don't typically want a diagnosis.
Instead, frequently what parents want is help, helping
their child to become more independent. The next two statements on this slide are
counterbalanced. One says autism is over diagnosed, one says autism is underdiagnosed. One or
the other of those is true. I will tell you that it is not over
diagnosis at this point according to science. That is not to say that there may be places
where there are doctors who might influence the
diagnosis of autism in a particular rural area. That is to say, however, that by far
when we look at the epidemiological data that is available to
us, autism is frequently underdiagnosed. That is, we frequently find more children
who have the diagnosis that were not diagnosed, than
we do find children who were diagnosed with the diagnosis but don't have it.
It is true also that the current incidence of ASD is still one in 88. There have been
other studies that have used other methodologies and have
suggested that autism may be as frequent as 1 in 50.
But those studies were based on parent telephone surveys. They were not epidemiologically
designed. The current best estimate of the incidence of autism in the United States today
is 1 in every 88 children.
That is why I say it is slightly more than 1 percent. It is about 1.18 percent of children
right now. The next statement is, all students with ASD
need 40 hours a week of intensive applied behavior
analysis. This is false. In fact, there was a study
recently completed by the researchers at the university of
Chapel Hill in North Carolina, at the University of North Carolina Chapel Hill, excuse me,
who found that using ABA or structured well designed
classroom made no difference in the outcomes for
children with autism. The final statement says we don't provide
ABA in schools, specifically public schools. This is also
false. ABA is not autism specific. ABA is not limited to one or two practices.
ABA is used every day in every single environment. The room I'm sitting in now has a big red
exit sign at the back. If that exit sign began
to flash and if I heard an alarm, that is using ABA to indicate to
me that I need to change my behavior. The alarm has been conditioned so that I associate
that with exiting the building. The exit sign with the alarms attached to
them are actually a form of ABA. ABA is used everywhere in every environment. Even public
school teachers can implement ABA and use it very
effectively to meet the needs of children with autism.
While we are talking about these final myths, I think it's important for us to note what
is it that children with autism need, because as I've
been pointing out throughout this discussion, the real key
to diagnose this is understanding a child's needs.
So, let's talk about intensive family training and support for that child. When I meet with
families after their child has been diagnosed with
an autism spectrum disorder, I tell them that it's not 40
hours. It is not hiring very expensive therapists to come to their house. It boils down to three
things that happen every hour for a child with autism.
And they are interact with that child regularly to elicit
communication. And usually the way this looks for very young children is to start a pattern
of play. Maybe you're pushing the child on the swing,
but every time you push them, you say the word
"swing," "swing," "swing." And then one time, you catch that child, and once they've gotten
used to that pattern, that routine of you pushing
them, you hold them and you wait.
A lot of times, that child with autism will make a sound usually kind of as close as they
can get the word swing. They might say, "eee" or "ing"
or "ee-ee-ee." As long as that sound is not a whine or
a cry, then say, "swing." That's how I teach parents to interact with their children, especially
they're very young children to elicit communication.
If an older child who has some words, maybe an older child is using one-word phrases,
and they walk over and they say, "raisin," I might
say, yes, it is a raisin and it's tasty. Would you like on? And
then, I might model, raisin, please, or I want two raisins, please. So I always teach
parents to interact so that they're always eliciting new communication
and more communication from their children.
I want, then, parents to teach and reinforce new skills at home. This might be naming things.
And so I ask parents to sit with their children with books, with toys, or even sitting at
the dinner table and naming the fork and the knife and the
spoon, or identifying the chicken and the peas and the
carrots or sitting with a book on the lap and pointing to the various characters. I
want parents to sit with their children and help them gain new
communication, new names for things, and most importantly, learn how to do things for themselves.
This gets to the last one which is increase independence. I want parents to always be
working with their children so that they learn to
do the things that they need to do. And so for very young
children, that might be putting on their coat when it's time to go outside, taking their
coat off when they come back inside, putting their shoes
on, getting dressed in the morning, using the restroom,
washing their hands, setting the table, clearing off the dishes from the table, throwing things
in the garbage can, cleaning up after playing. These
kinds of everyday independent activities really help that
child learn to cope with the environment. If parents of children with autism and teachers
of children with autism focused on these three things,
especially for the very young children, every hour,
children with autism would surely get 40 hours of intervention and more.
As we look at eligibility issues though, we want to delve a little further into this whole
diagnostic picture. And so, as you see on this slide, there are arrows that help you
move through the various ways that you might encounter children
with autism. The first one has a medical diagnosis. If
a child comes to school and they already have a medical diagnosis, then the eligibility
team should be asking themselves what's the impact of that
diagnosis in the educational environment. What supports
does the child need, and what program would best meet that child's needs? So the questions
that that child study team asks and attempts to
answer about that child should be geared around those
and not necessarily around diagnoses.
If a child enters school and they have not been diagnosed but they present a clear,
uncomplicated presentation of autism spectrum disorder, and everybody on the team looks
at the child and says, yep, that's an autism spectrum
disorder, then you need to assure that there's agreement between team members and that that
autism spectrum disorder impacts that child in the
school system. Yet again, you're looking at the supports that the child needs and the
program that would meet that child's needs.
Sometimes, children enter school, and there's more than one disability. There might be two
disabilities or more. You might have a child who's presenting who has a hearing impairment
but also is having extreme difficulty acquiring language
and interacting with others. That child might have an
autism spectrum disorder. And so when you see two or more disabilities, you have to
ask yourself, as an educational and eligibility team, which
of these disorders has the greatest impact in the life of that
child, and then how do we formulate supports to meet that child's entire needs and what
program would best meet their needs.
Finally, some children come to school and it is a complicated picture. They might have
an autism spectrum disorder, or there might be
a number of other disorders that are impacting them.
That's when you need a full, multidisciplinary team, and you might even require outside consultation
to assist you in best understanding the needs of that child and matching supports and programming
to meet that child’s needs.
The state of Missouri has developed a 3-tiered approach which I think is very helpful. And
so there is a Web site at the bottom of this
slide that you could review. The information on this slide was
taken from page 12 of this portable document on-line. And this identifies how do we match
standardized tools and potential tools that a clinician might use when they see a child
that might have an autism spectrum disorder. And so they
divided this into three tiers.
The first tier refers to a child who has unambiguous autism spectrum disorder. Well, the
clinician, at their discretion, would choose standardized tools and identify the tools
that would best meet their needs and the team's needs as it
relates to understanding that child.
And the second tier, a child might have mild symptoms or more complex symptoms and so that
there might be difficulty figuring out is there a differential diagnosis. Does the child
have an intellectual disability? That clinician should
use standardized tools to help them measure the degree
to which that child is different from other children. They want to consult with the team
and select instruments that really help them answer the
pertinent questions. Those instruments could include
some of the checklists that we looked at earlier in this lecture.
Finally, the Missouri approach talks about tier 3. And that is there are very subtle
or complex symptoms, or there's a very complex history,
and the team has multiple concerns. At that point, yes,
the team should use standardized instruments, and the ADOS is usually needed, as well as
other tools to best understand that child.
In closing, what we talked about today is the impact of the changes in the Diagnostic
and Statistical Manual, Fifth Edition, to the
diagnosis of autism and more specifically to the educational
team members who are attempting to meet the educational needs of those children in their
public school systems.
I have some closing points. Diagnosis is least important when we consider how do we best
serve a child so it doesn't make sense to argue about diagnosis. It makes a lot of sense
to argue about what we should do to best support a child,
what we should do to best meet the educational and
functional needs of that child, and how we go about helping that child achieve the greatest
independence that they can. And so our focus really should be on the support needs of the
child, and any tools that we've used to diagnose or understand
a child's needs should help us answer the questions we have about that child, rather
than focusing exclusively on the diagnosis.
Thank you again for tuning in to this Web cast, and I hope you've found it helpful.