ROUGH EDITED COPY
EHDI Conference-SUPPORTING FAMILIES
WITHOUT BIAS: A PANEL DISCUSSION
Considerations in Assessment of Autism
Spectrum Disorder with Children
3/9/15
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>> Okay. I think we are going to get
started. I'm Katie, the moderator. Please
just make sure you fill out the evaluation.
We are in the considerations and assessment
for autism spectrum disorder for children who
are deaf and hard-of-hearing.
>> Thank you. How lucky am I in that I have
the privilege of presenting with Susan Wiley
and Chris Yoshinaga-Itano, in fact. Making
me do much of the presentation. So very
lucky, indeed. The person who is also on our
panel or contributed significantly to this is
Deborah Mood, and she was not able to join us
here today, but certainly gets kudos on this
presentation.
We are going to talk with you today about
autism in children who are deaf and
hard-of-hearing and some of the complications
around that, a little bit of research about
what we are learning with the population as
well as what we know about diagnostic
considerations and we will end with some
intervention. So we hope it is of interest
to you.
We are from these places. Colorado and
Cincinnati and Boston and we are collectively
bringing together some of our minds and our
experience clinically and wanting to help
inform you. I will say that the work that we
are presenting is based largely on a paper
that was published recently.
It is making too much noise. I think I'm too
close. How is that? Better?
Okay. We published a paper in seminars in
speech and language and it came out in
November of 2014. So a large part of this is
sort of based on that and we do have that
resource to be able to share with you. So
access that if you are interested for more
information.
Disclosure, we are not getting paid for this,
sadly. That's all.
(Laughter).
Christi is associated with the LINA (sp)
project. But doesn't have a financial
interest that we are presenting today. We
are hoping to talk about rates of autism in
deaf and hard-of-hearing population and as
well as describing some of the developmental
trajectories. We are going to talk a little
bit about red flags, some tables to present
to you that is sort of looking at when
somebody presents with issues, how do you
kind of figure out if it might be under ASD
or just reduced hearing. And then we will
talk also about assessments.
Based on our experience and on the literature
we are going to address these things. We
will talk about that etiology, the red flags,
assessment, implications for dual diagnosis
and what that might mean in terms of
intervention, resources for family and then
also thoughts for professionals interested in
this field and what might we need to know
going forward.
So why is this topic important? If you went
to the plenary this morning then you are
aware that within the deaf and
hard-of-hearing population, the incidence of
autism is increased relative to those who
don't have reduced hearing. So studies are
coming out, we are looking at that around
4 percent of children who are deaf and
hard-of-hearing fall within the continuum of
autism spectrum disorder. That's a rough
number, though, because as we will show you
the diagnostic process and the availability
of how we figure that out, there is still
some gaps in what we know. We will share
what we do know and then we will point our
where those gaps are and what we need to sort
of think about going forward.
Misdiagnosis can be significant. So if a
child has autism spectrum disorder and they
are deaf and the autism spectrum disorder is
missed or misdiagnosed, there are big
implications because they won't get the right
kinds of interventions and supports and
perhaps get less supports. We also know from
the literature that historically the
diagnosis hasn't happened efficiently or
quickly and we will show you some of that in
the slides, so that we are hoping that
currently if we take kids who are newly
diagnosed and they are young now and now we
have better knowledge about how autism can
present in this population, that going
forward we can produce better outcomes and
results for these kids and their families.
All right. So rates of autism spectrum
disorder for those who are deaf as well as
those who are not. Taking research from the
CDC, and this just shows some information
about prevalence rates, we will say also
going back to the plenary this morning rates
of other conditions in the deaf and
hard-of-hearing tend to be increasing -- more
awareness, lots of those things. Regardless
of what is contributing to that, we see more
kids who appear to have autism and deaf and
hard-of-hearing. If you are in the Early
Intervention field, you are likely to
encounter some of those kids and know how -need to know how to deal with and support
them better.
Prevalence of autism based on severity of
hearing loss. So the tricky thing here, we
want to make sure that we don't put out the
idea that hearing, reduced hearing causes
autism or -- you know, that's not the
message. The idea that there is a
correlation here. We also know that children
who have mild or moderate hearing loss, that
that might influence how the diagnosis comes
to be assessed or determined. So there are
different ways in which that can influence
what this picture looks like.
But you will see that in the profound range,
the number of students who are diagnosed with
autism is significantly higher than in the
less severe hearing loss ranges.
So this fancy slide, Susan and her group get
credit for this, but what it shows with the
circles, it shows us the age at the hearing
loss diagnosis. And then the triangles that
are in red show us when autism spectrum
disorder was diagnosed. So we see that
across these categories, that the hearing
loss was diagnosed earlier, the autism
spectrum disorder diagnosed later, and not
very often at the same time. Sort of
figuring that out.
In this seminar, special edition, we also had
another publication that looked at prevalence
rates and found that on average, diagnosis of
autism spectrum disorder is like 2 years
later than in children who have typical
hearing. So there is evidence building that
suggests that this is the case.
Part of the reason for that is people being
uncomfortable with it. If a person
specializes in autism and then they are faced
with a child who has reduced hearing they
don't know how to account for that. So part
of our mission is to help educate people in
both and say that it is important to know
about both because I think that by doing
that, it might be one good way to help bring
those numbers down and make the diagnosis
earlier.
So in understanding this dual diagnosis, it
is important to recognize the rates are
higher within the deaf and hard-of-hearing
population. And if we go back to that
severity of results, it is not a clear link.
It is not that if you have profound hearing
loss you will have more profound autism.
There is a mixed bag and there is different
research that indicates different things in
this, particularly with the mild hearing loss
we see later delays.
Importantly, the delayed diagnosis means
delayed intervention which leads to delayed
outcomes or reduced outcomes and we sort of
see that. So part of why, probably the most
significant reason that this is an issue is
that it complicates language development,
both being deaf and hard-of-hearing and/or
having autism spectrum disorder has language
implications. As you know, if you have
worked in this field, reduced language is one
of the criteria. So if we have reduced
language for different multiple reasons, it
could lead to a more significant issue in
that area.
All right. So what's the dilemma here? In
studies that have worked at the dual
diagnosis, in the process of that we are
seeing that you can both underdiagnose, miss
it, or overdiagnose, and there are
implications listed for both of those. If we
don't catch it we are missing the opportunity
for interventions, or the interventions that
are provided may be less. So a child may
have reduced hearing, they may receive Early
Intervention services only for
speech-language therapy, for example, whereas
they might need additional things.
If we overdiagnose, the supports might not be
appropriate. Sometimes certainly in parents,
the more the better, bring it on, help us,
anything we can get, and sometimes that's
good and sometimes if it is not the right or
appropriate intervention, then we are not
likely to see necessarily good outcomes. So
we want to make sure that we are trying to
get as close as possible to finding what is
an accurate diagnosis for that.
Real-life implications also include the fact
that there are places like schools for the
deaf and other programs where if a child is
deaf or hard-of-hearing and has other
complications they may not be accepted or
might not have the program support to manage
what those children need. So there are
real-life implications and, you know,
certainly some people say it is not that many
people. If we look at the overall numbers,
we are talking about an increase in numbers
and talking about really complicated kids who
have particular needs that we want to try to
support.
So what are those diagnostic challenges? Why
is it so difficult? Certainly in looking at
our clinical population we could say who
diagnoses. In the regular medical facility,
perhaps they might have a developmental
pediatrician, audiologist, psychologist.
They make up the team that makes the
diagnosis. But if you have a child who is
deaf or hard-of-hearing they may not fit into
the services, may be in deaf services and
might be completely separate. We lack
standardized assessments to make this
diagnosis at this point in time. Providers
really tend to be trained in autism or
trained in deaf. And so finding the people
who are interested in generating and growing
their skills across those 2 areas is going to
be an important thing.
Further, some of the people who are working
with autism, solely autism may not understand
the implications of the language part in
working with deaf and hard-of-hearing
children. Lots of you folks know this really
well, so you are in a good position to help
inform that piece, but finding, again,
providers who are fluent and proficient in
providing both kinds of services can be
challenging.
We also know that kids act differently in
different settings so getting the clear
picture. With autism diagnosis, as I
mentioned, there is often several providers
that are involved in making that diagnostic
decision. So when a child presents
differently in one setting and then you might
think, well, is that because of the reduced
communication, if the deaf person who is the
professional was working with them and says
they seem to communicate in one way and then
the person who is on the developmental side
who may know less about the hearing loss sees
them in a different way, how do they
reconcile is it because of hearing loss,
autism. And, you know, of course it is a
very complicated intermix of those different
factors and others. What's going on at that
time for the child.
If interpreters are involved in the process
it can add an additional layer of
complication. They may or may not recognize
what is a typical language. Interpreters are
amazing people who are sometimes really good
at taking language that's provided to them in
a less cohesive way and making it look really
fluent. So it is a challenge because we
really need to know what is coming from the
child. And so if there isn't a direct path
for communication, then that needs to be sort
of -- needs to be considered.
There is the possibility, if an interpreter
is present that it can have (audio skipping),
the parents and the providers and how all of
that dynamic works, certainly, there is a lot
of literature with interpreters and
translators and that has an impact when
somebody else is in the room. So if there
are programs out there that are autism
speciality programs and they are looking to
grow and expand their services to deaf and
hard-of-hearing, that consideration really
needs to be about those language things, what
role can the interpreter have and how might
we support them in understanding how autism
presents.
So certainly conversations with interpreters
in advance if at all possible around, you
know, I really want to know exactly what the
child is saying or if there are nuances with
the sign language perhaps of the child, we
need to know about those so that we are
getting the full picture of the child.
But given the importance of the language
being produced by the child and how that
relates to the diagnosis, when possible, to
have direct communication, it seems like a
really good idea.
We need to talk about screening, and I'm
going to hand it over to Christi.
>>CHRISTINE YOSHINAGA-ITANO: So one of the
biggest issues is that we are diagnosing
these children from the newborn hearing
screening with hearing loss, and then they
are getting treatment. And you saw that
there are more kids in the profound hearing
loss category who are getting diagnosed with
autism, and they are also getting cochlear
implants anywhere between 12 to 15, 18 months
of age, right? So this is before anybody
would ever -- most people would not be
suspecting autism in these newborn babies in
the first couple of months of life when all
of these decisions are being made about
technology.
So we have this group of kids now who have
been implanted, we have kids who have been
fit with hearing aids, and people are
beginning to think there is something not
quite right about their learning trajectory.
They just aren't learning the way we would
anticipate. Everything seems to be right.
Now, part of the problem is that the
screening devices that are out there, most of
them are questionnaires, and they have not
been done with deaf and hard-of-hearing
children. This fact, I think there is only
one and it is the -- it is not really deaf or
hard-of-hearing, it is hard-of-hearing
shall -- it is really kids with otitis media.
So they use the baby and infant screen for
babies with autism traits and they administer
them to children with conductive hearing loss
and PE tubes. And they found that if you
have just a conductive hearing loss you don't
overlap. Now, the problem with this is that
we have a lot of kids with profound hearing
loss, and they are completely different than
our conductive hearing loss population.
So it has been frustrating because we don't
have an aid for Early Intervention
specialists to say, okay, I have a feeling
that something is not going right or the
parents are saying, is there something else
going on. And then we don't have something
to help them with this. So we have been
trying to figure this out in the state of
Colorado, and we have been using a number of
different instruments that are available to
us. I'm going to talk about the LENA, which
has an autism screen designed for hearing
children. And it has amazing specificity and
sensitivity with hearing children who are
later diagnosed as autistic. It is somewhere
around the 96, 97 percent right. And I'm
going to explain to you what this is.
But we have also been using the child
development inventory, which we didn't
actually know is as sensitive as it is, and I
explained that it is a questionnaire. It has
7 developmental areas. It is the social
subscale that actually seems to be the most
powerful in conjunction with all of the other
information that we have.
So what we are looking at is who is at risk,
right? So we have been doing, for any Early
Intervention providers that requested or any
parent who request it, we will do a LENA
evaluation. And it stands for language
environment analysis. It is this new
technology, this little thing here. It is
about a half of the weight of a cell phone.
There are special clothing designed. I don't
actually use the overalls, I like the little
vests on kids. And it has got a little
Velcro pocket so the parents turn it on, they
stick it in, it runs for 10 to 16 hours, we
tell them to run it all day long and don't
stop it because if you stop it, it has to
start all over again. So they kind of forget
about it. The only time they might take it
out is naptime. If they don't want it on the
baby they can take it out, keep it running
and just lay it by the side of the crib and
then put it back when the child is awake.
So after they do a day of recording, we
either pick it up, they mail it in, we plug
it into our computer with software, it dumps
in about one to three minutes, and then it
starts processing. It takes about, on
average, about a 3-hour processing of this 16
hours of audio file. And then it starts
spitting out reports. Now, the autism screen
is not an automatic screen so you have to
additionally request the autism screening.
It is not in the basic software.
This is basically what it does. It does an
automatic processing of the vocal stream. It
identifies different sounds within the vocal
stream and matches it to the acoustic
envelope of an adult production of individual
phonemes, consonant vowels, VCs, so it is a
fairly complicated paradigm. If the child's
vocalization is in the acoustic envelope of
one of these things that it is pairing with,
it will accept it. Your ear might not accept
it, but we are finding that if it has got a
good enough use of the frequencies of that
particular group, that eventually even if
that child is not producing it exactly right,
that they are going to go on to have a pretty
good production of that phoneme.
So it does -- it can separate out the key
child, the child who is wearing it, other
children, the adult conversational partner,
and it separates it into male versus female.
So if you have more than one male, it is
going to have a hard time. It will think
that it is the same conversational partner.
If you have -- we have run into a little bit
of difficulty with twins because twins sound
so much alike and they are sitting -- they
can to each other and they talk with the same
volume, so twins are a little bit of a
difficulty. Even listening to it, sometimes
I can't tell which child is the one who is
talking. So there are some times when it
doesn't work perfectly.
It measures the environmental sound, it
measures, and this is a key thing for autism,
it measures overlapping sounds of what we
call colliding sounds. So that is when a
child is using vocal production for
conversational turn-taking, deaf children,
language disordered children, typical
developing children, they make a vocal
utterance and they wait for their partner to
make one, they make one. People with autism
are using vocal production not for
communication purposes so when they talk they
actually collide all the time with their
conversational partner. And they have a much
higher incidence of this particular aspect of
this.
So this is kind of what it looks like. It
can tell consonant like, vowel type sounds,
separates out the nonspeech sounds, sounds
that are not moving in the direction of any
phoneme in the native language. And pauses
and silence.
So this is a dataset. The original dataset
for the specificity and sensitivity of the
LENA for autism of hearing children, they had
106 typically developing, 49 language delayed
and 71 children with autism. And I'm just
going to show you this -- there are -- I have
like 26 -- I think right now there is over 26
variables that are run on the autism screen.
This is one of them. And I like to show this
because it clearly differentiates these 3
groups.
The green is typically hearing, typically
developing. And you can see that there is no
overlap with the blue group, who are kids
with language disorders. All right? So they
have speech differences from the typically
developing, but their speech with consonant
production is significantly different than
the red, and the red are the autistic
children. So you can see what's really good
about some of these features that we are
doing is that it is separating out in a very
nice way these 3 groups, and on many of the
variables that we are testing like colliding
speech there is no overlap. All right?
I don't know if you can see this as well, but
this is throwing in children who are
hard-of-hearing. We have not yet thrown in
children with cochlear implants. And the
purple bars, let's see if I can just -- is
this -- no. It is not going to do it. The
purple bars and the green bars are almost
completely overlapping, which is really good
news for us because it says hard-of-hearing
kids and their vocal production with their
frequency uses, when they are paired to an
adult production of phonemes of English
language, they look really like hearing
children when we are early identifying them
and getting them amplification. They are
completely different from language disordered
children on this, consonants per their
utterance. And this is not like
speech-language pathologists, this is meant
length of utterance, pause that the computer
counts as an utterance. And if you see the
blue for language disorders that is
completely different, and the red for autism,
they are completely different.
Now, one of the things you should see is this
is with autism, is the bar doesn't start
until 2, and we think that it actually will
be sensitive below 2, but the problem is that
most autistic children are not diagnosed
until 2. And so since they are not diagnosed
until 2 we don't have -- we don't have enough
of a control group to be able to say that.
So we have now thrown in some kids with
profound hearing loss and cochlear implants
and I'm going to show you some of this.
But this is the child development inventory,
a parent questionnaire on social development,
and these are 3 cases which we have now
replicated about 16 times. It is exactly the
same profile. And then that is that the kids
are starting out looking not too bad at 14
months, and then 6 months later their
quotient you think is dropping by
developmental quotient point. And 6 months
later, it is dropping by another 10 to 15
quotient points.
Why is it happening? Children with autism
have different patterns, and one of the
patterns is sometimes they regress. They
have skills and they lose those skills,
right? But a lot of the children in this
group didn't lose skills, they failed to gain
the new skills which were parent reaction
skills. So they were okay when they were
just with themselves and with their parents
or relatively okay on those things because it
is not greatly sensitive for slight
differences in parent-child interaction, but
once it got to their interaction with peers,
the kids were not developing those skills.
So if you ever see approval like with a
developmental quotient, so this is the social
age over the chronological age or cognitive
age, whatever you are using as the base, if
it starts going down every 6 months, those
kids are at extremely high risk for an autism
diagnosis, and you should immediately get a
referral.
So our EI providers weren't comfortable with
one indicator because autism and deafness at
2 to 3 years of age and referring, that's
really kind of scary. So we also looked at
the MacArthur Bates (sp), there are a lot of
things, the gestures go down, but you have
to -- have gotten them at 9 months, 16 months
and 22 months, symbolic gestures, they can't
keep up with the symbolic gesture growth of
other children. So if you see a decrease in
their quotient, that's another indicator.
Symbolic play can go down. The problem is
none of these instruments in and of
themselves are 100 percent with every child
no matter where they are in the spectrum. So
you need a variety of different tools.
Now, this probably is not -- I can say this
better. What we are doing is we are
combining the Early Intervention, speech
pathologist, audiologist input, the
professionals working with the kids say, hmm,
something is not right. We are looking at
the social quotient and whether that's going
down, we are looking at symbolic play,
symbolic gesture, and then we are doing the
LENA. When all of those 3 things combined
together are all saying the same thing, we
are referring.
And what's happened, is that it has been an
incredibly effective screen and we are being
able to identify our babies somewhere between
2 and a half and 3 and a half years of age
and get them into the appropriate Early
Intervention. And that's incredibly early
for us, but I can tell you that when we have
been able to do that, when we have the Early
Intervention combined with our autism team
and doing some really nice interventions,
which we will talk about later, I'm going way
over -- but that it is incredibly effective.
So we have mainstreamed now the first 2 early
diagnosed deaf-autistic kids into a regular
kindergarten. And they are doing really
amazingly well. If you had asked me if that
would have ever happened, I don't know if we
can ever do this, but there is all kinds of
possibilities.
This is written up in this article and you
might want to see it in the seminars -- do we
have 8 or 9 articles? Something like that.
There is a lot. The whole edition is all on
autism and deafness. So there is 2 different
articles on what I just said. Seminars in
speech and language. And then November of
2014 -- yeah. The whole edition is on autism
and deafness.
>> Christi was a special guest editor and
all of the articles are related to this topic
and of interest. So you should certainly
check it out. And we can make our own
available to you if you contact us. So you
can certainly send emails and we can make
sure you have access to those.
We are going to talk about the red flags,
which I think are really key and I think
are -- that's a lot of information. So we
are going to talk about them sort of cursory
and encourage you to seek out further
information from the article, if you can. So
red flags. How do we know if there is an
atypical behavior that we see, how do we know
if that's pointing toward autism or pointing
toward deaf or hard-of-hearing
characteristics, perhaps. So we are going to
look in these areas. Atypical preverbal
communication, things like eye contact, poor
orientation, poor (off mic). This is ASD.
Delays in language that are beyond what might
be expected by reduced access to language,
ineffective or inappropriate supports for
auditory access, those kinds of things. If
you are in the field and you know this stuff,
you know that there are some kids who present
at 2 years of age and you sort of say, well,
they got diagnosed a little late, here is
what happened, it was unclear, so some of
these delays might really be attributed to
that process of their hearing status.
And there are other times you say, even given
all that we know about hearing loss, that
can't be it. There is something else.
The next category is atypical language
features. Things like echolalia. Talks
about palm rotation, individualized instead
of saying bye. And then they self-effect.
Kids who are on the spectrum and who have
(off mic) don't correct. So there are things
like that that we can look for as sort of an
indication to see which path they might be
on, or if it is both.
So social difficulties. Things like having
difficulty initiating with peers, even when
we take into consideration communication
challenges. So you have a child who is deaf
or hard-of-hearing, hasn't been around a lot
of hearing peers, you put them in a novel
situation, we would expect that that might be
a situation and we wouldn't attribute to it
something else. But given our understanding
of all those other things, if social
interactions continue to be challenging and
you continue to see difficulties or shying
away, the prevalence rates that -- I don't
mean shying away, avoiding those kinds of
social interactional skills or when placed in
them, a child is very in tune to what it is
that he or she is doing, those could be
indicators as well. Restrictive behaviors
and interests that you see, which are
typically associated with kids on the
spectrum.
So in terms of deficits in social and
communication and social interactional
skills, part of this is going to rely on your
reading abilities. And because I can't go
through all of them, but we have highlighted,
if it is typical, typical autism spectrum,
here is what we see. Difficulties with
back-and-forth conversations, limited
enjoyment or willingness to engage in social
interactions. In typically developing deaf
and hard-of-hearing children we see wanting
to engage. There might be difficulties in
engaging, might have been less role modeling
and skills, facilitation in how to make that
happen, but the desire is different.
Eye contact, too, in kids who are deaf and
hard-of-hearing tends to be good. They tend
to be seeking out information visually,
whether they are talking about modality, I'm
not talking about signers, but any child with
reduced hearing, their visual hearing,
increased scanning, for example, is
increased. That could be an indication that
it is this way.
And we should note that there is a whole
bunch of these, so it is not like if you are
thinking of a particular child and you say,
they do that, they must be autistic or that
must be just because of their
it really is a combination of
Christi alluded to, there are
that go into determining this
diagnosis.
hearing status,
things. And as
many factors
autistic
But in the social realm, here is what we have
highlighted. Here is a little bit more
deficits, reciprocity. So the first 2
columns say autism spectrum, and then the
final one says in kids who have both. In the
kids who are deaf and hard-of-hearing and on
the spectrum, this is what we think it looks
like. This table is both on research as well
as clinical experience. People who have
worked in the population, here is what we
see, this is what leads to that.
This is a summary paper as opposed to the
whole thing doesn't say this is what the
research says, but it is also formed by
clinical impressions and emerging and
developing sort of gut feelings about how to
sort these things out.
Because before I set, you know, we are
thinking is it autism or is it deaf or
hard-of-hearing and the reason you are here
is to talk about when kids have both, what
does that look like, you will see that for
each of the categories sort of going forward.
Things like difficulties with direct
attention, not responding to one's name, even
making sure that we are getting everybody's
attention and that they have access to that.
This might look like that. Those kids who
have both.
Difficulties understanding other's needs and
feelings as well as processing facial
expressions and gestures and those motions.
So that's an important piece, that's an
overlay that people who are in either
disciplines may be less familiar with.
The next category of communicative behavior,
this is what we see in typical autism, things
like reduced eye contact, differences in body
language, difficulties processing nonverbal
information, whereas kids who are deaf or
hard-of-hearing and only deaf or
hard-of-hearing we see a lot more of that
lighter use of facial expression and access
to those things. So it is so much more
engaged, more integrated, more use of eye
contact and social exchange than in kids who
have both.
We see a little bit more limited gestures.
Even those kids who rely on gestures and
signed communication, we see limited use of
them in exploration, expression of their
thoughts. Reduced pointing for things,
abnormal prosody. Poor understanding of the
integrated ASL facial and grammatical
features. That's one of the things we wrote
about. So if you are relying on that as your
means of communication, we would expect you
to sort of pick up those things and so kids
who are on the spectrum have more difficulty
with that. So when we talk about prosody,
those are the social rules that govern social
exchanges. Many people have an inkling of
what that looks like in kids who are on
the -- kids who are deaf and hard-of-hearing,
and on autism spectrum it might look a little
bit different. We may have those responses
to particular questions, but the way in which
it is produced and understanding of how you
are asking those questions using facial
grammatical features would be different, too.
All right. So some of the features of autism
spectrum that we see in ASL. Palm reversals.
So that's the bye-bye. Pronoun avoidance or
pronoun reversal. Instead of I, some will
refer to themselves as their own name. If
you are engaging with them, what about you?
Yes, you. Referring to themselves. And
holding on to the "you," meaning me. And we
have some -- there is some research that has
been done by Erin Shield (sp), and we had
some evidence of that. It is an interesting
thing to watch if you have the opportunity.
Continued use of one's own gestures despite
being taught how to do something differently.
One of the examples is continuing to sign red
instead of ketchup. Even if this is how you
do, here the context for red, it means
something else, yes, ketchup is red, but -and you will see kids who are on the spectrum
and deaf who use sign, continue to use those
things over and over again. It is
difficulties in correcting.
The last one, the mixed results regarding
facial expressions, there is a researcher who
is doing some work on that, and it seems to
be sort of inconsistent. There are ways in
which kids who have both, autism and are deaf
or hard-of-hearing, seem to follow social
norms in the expression of their ASL, and yet
not understand the social implications of
that, if that makes sense. Does that make
sense?
Okay. All right. For the next category,
difficulties in developing and maintaining
appropriate relationships. So difficulties
adjusting, being really rigid, difficulties
making friends, all right? And kids who are
typically developing deaf and
hard-of-hearing, we see lots more
flexibility, interest in making friends,
desire to do that, interested in people who
are of the same age. In the population that
includes both, here is a little bit of what
we see. Play continues to be really rigid,
less imaginative. Unusual social overtones.
Grunting at peers, hitting them, not engaging
despite any natural consequences we might
place on them. Lots of kids who are in the
early preschool years really want to be liked
by their teachers, and in situations like
this they may care less about that or be less
aware of that.
How are we doing?
Okay. With restrictive patterns, I think
walking and (off mic). Those are often
associated with ASD. In typically deaf
hard-of-hearing kids we don't see that. If
there are reduced cognitive ability, those
kids who have reduced IQ you might see
behaviors that can be more repetitive.
Echolalia in typically developing, but that's
like practicing it out, you know. Little
kids do that, too, they copy you, and they
are looking to see how you are responding.
And if you start to say yes, that's right,
baa, that means bottle and you make -- so
typically developing deaf and hard-of-hearing
might be copying what you are saying in order
to try to understand.
It can also be a sign of reduced
comprehension. When I'm engaging with the
deaf/hard-of-hearing, I may say is that what
often gets them the head nod. That's all we
are demanding, copying as opposed to clear
understanding of what they know. Similar to
what has been mentioned before with the palm
rotation and echolalia and rocking and
twisting and -- children (off mic) children
have both.
Strict routines. Typically developing kids
generally are more flexible with that,
although they may struggle with things like
transitions. What we have seen in the school
situation very often teachers will say these
kids really have difficulties when we are
trying to transition and that might be
because of us not doing a good enough job
telling us this is what's happening next. So
that's an example of where you might see some
rigidity. You might think, is that spectrumy
behavior. But we have to think about the
context, the level of understanding, the
clarity we are providing to children who are
deaf or hard of hearing that result in the
behaviors that they are showing us.
In the population that is actually diagnosed
we might see the -- (off mic) done in the
same way, at the same schedule, lots of
resistance to change. Particularly if the
communication -- there are communication gaps
or communication is not smooth between child
or providers, might see incidence of that
increased or amplified.
Typically developing deaf kids don't have
necessarily -- they don't get stuck on being
fixated or highly ritualistic. We can see
sensitivities in autistic, highly sensitive
to touch or certain textures or things that
are too hot or too cold. Some kids who have
reduced hearing have sensitivities, too, and
might be related to other conditions they
have. So they may be deaf and have a reason,
an etiology for that that causes sensitivity.
But in the combined population, we see more
of that.
Okay. Other diagnostic considerations. I'm
going to hand it over at this point to Dr.
Dr. Susan Wiley.
>>SUE WILEY: Mine should be titled clear as
mud, right? In hearing kids this isn't
always as easy, and so there are a number of
things that overlap. And when we think about
it, it is a behavioral checklist, so where
these behaviors are coming from or stemming
from can vary from kid to kid.
So I have seen a number of kids 2 to 3, I'm
very worried about an autism spectrum and at
5 or 6 I go, wow, that was just language and
OCD or something, you know. Or there was
something driving that phenotype or what you
are seeing in the environment, but it is
really driven by something different
qualitatively than autism spectrum. Because
it is really pervasive, i.t is across
settings and, you know, we see life-long
impacts of that. So it can be challenging
when kids have an intellectual disability or
communication disorder because you have
delayed communication, but it shouldn't be
atypical or asymmetric.
So I talk a lot about asymmetry in language
and it kind of lines up with Christi's
screening stuff of social communication or
our play, is that markedly different than our
language is, a lot more worried about that
kid. But children with intellectual
disabilities have a slower rate of progress,
so if I have a child who is functioning
across the board at 9 months I'm not going to
see pretend play yet because that's just not
developmentally there yet. So we have to
take into that whole framework around where a
child's functioning.
There is a lot of behavioral things that can
really mimic autism spectrum. ADHD might be
impulsive, may not recognize personal space,
they may act before they think, and/or they
may not attend very well because my brain is
going 20 places so I'm not attending to the
language. And there are a number of kids who
are hearing with ADD who have a little bit of
language lag and then kind of catch up
because they just weren't paying attention.
But that ADHD in kids who are deaf and
hard-of-hearing can be tricky, too, to sort
that out.
Anxiety and obsessive-compulsive disorders
are really challenging to tease out, and this
is where if you have an anxiety issue or more
obsessive-compulsive traits and language
impairment, you can really look a lot like
autism. Because I may be socially anxious, I
may not want to engage because I'm nervous
how that might look. There are kids with
childhood OCD, it is not easy to figure out,
but extremely rigid and I have have to have
the blue -- juice in my blue cup and my milk
in the orange cup. If it doesn't, it just
bothers me. And you can talk to adults who
say if I don't tap 3 times I feel really
anxious inside. A little kid can't tell you
that. So there is a lot of overlap at that
point.
There are some other medical conditions that
can kind of mimic and imitate kids with
autism spectrum. So a lot of people with
Tourette's syndrome, with tic disorders, so
that's a disorder where you have both a motor
and develop tic, so motor tic, anything from
a blinking, an eye raise, a little bit of
shoulder shrug. And a vocal tic is usually
you have got to have something that phonates,
so it might be a throat clearing or a sniff,
even a sniff can be a tic, so people often
think, do you have allergies. But what comes
along with Tourette's can be ADHD,
obsessive-compulsive disorder. So again,
these folks with Tourette's can look a little
different in how they present.
There is a specific EEG abnormality, it is
very rare called Randall Clevinger. And they
seem to be doing okay and have a period of
regression. So you may have kids with
regressive form, these kids will tend to be a
little bit older, but they really have a more
aphasic quality to them. So they want to
engage and communicate but really struggle
with formulating and processing our
information.
I bring up peripheral vision cues because
sometimes kids with Usher syndrome are
stand-offish to their peers because they are
not seeing the cues of people trying to get
their attention from the side. So I said hi
to you and you blew me off, and how rude is
that. If we are looking at joint attention,
what is the kid's visual field, is vision
actually an aspect of something we need to
realize, that they may not be seeing what we
are talking about and, therefore, you are not
going to look toward that information.
And then benign stereopodies. The flapping
and the excitement. So one of my -- (off
mic). One of my favorite pictures of my
nephew is at like 3 years old going down the
slide like this. All that flaps is not
autism. And so he doesn't have autism. I
mean, we might question other things, but not
that.
And then sensory integration difficulty, I
bring that up because a lot of kids have
sensory issues and my framework is a little
bit different than an OT. I see that
overlapping most frequently with 3
conditions, one being autism, so I'm
tactically defensive, sensory seeking,
whatever, you know, the numerous ways we can
have sensory processing challenges. So
autism is clearly one, but kids with ADHD can
also have sensory issues in -- not knowing
how their motor runs, kind of revved up, and
then kids with anxieties and OCD, don't want
you to touch them, these are the things where
I see overlap more frequently and so just,
you know, it is not always autism. So good
luck.
(Laughter).
But we are going to talk, the next section we
are going to talk more about interventions
and hopefully that will give some guidance if
you think you have somebody who has it.
>> What we know about interventions is that
we don't know that much. What we do know
that has been published is based on case
studies. If you refer back to the plenary
this morning, we can take what we think
works, try it with the deaf and hard of
hearing population, and you can't just start
from stratch, we do need to take what we know
is out there now.
All right. So we definitely need to consider
multifaceted approaches to language. One of
the issues in kids who are dually diagnosed
is language and we need to make sure that we
are making the information and the
intervention appropriate for them and
accessible to them. We need to understand
that the way that they both express
themselves and the way they understand
receptively can be different and so we need
to make sure we are making adjustments for
those things and that we are targeting those
core symptoms, sort of have been addressed in
the red flags side, we are making sure we are
addressing those and doing it in a way that
is culturally and appropriately sensitive to
children who have reduced hearing levels.
So features of autism that might impact both
language acquisition. Joint attention,
reduced eye contact, also that motor
imitation piece, we need to sort of be aware
of those when we are thinking about how do we
adjust communication for dually diagnosed
kids. It might be important to try to see
what is that a symptom of. Perhaps the child
has cochlear implants and they are not
working right now and part of the reason they
are not responding on this particular day, it
is not functioning like it should. So we
might take a child who is deaf or
hard-of-hearing, put them in an autism
related program and unless they are sort of
at least attune to those possibilities, they
might not notice that.
Sensitivities, as discussed by Dr. Wiley,
might lead to a child not wanting to use
their gear. They might want to -- they might
refuse it, might be uncomfortable to them.
So that's another way we might have to adjust
communication for this population.
>> We should have organized these a little
bit better. I actually want to give credit
to (off mic), who helped co-author one of the
articles. This sounds like an infomercial.
She participated in the focus group we did,
and also helped co-author the article on how
to support families. And I think, you know,
I have been really struck by how families say
thank you for helping me get in the right
direction. I knew things weren't working,
know, did I want to hear my kid might have
autism spectrum, absolutely not, but got me
on the right path.
But we don't want to delay raising concerns,
and it is easy to kind of want to hold off
and try different things, but that really
just slows us down. And a lot of the role of
the deaf supports and EHDI programs are
really to help families understand what is
different or what, you know, what we usually
see in kids and what we are seeing
differently in this particular child, but I
think also it is really important whenever we
are working with families to start with
strengths, you know. That's kind of a
no-brainer. And then move into those areas
of concern.
But with a kindness, and I think when you
work with families a while who trust you,
they are more ready to hear that. And, you
know, I think the other really important
piece is there is lots and lots of
investigation out there on the web, and you
can screen things and you can get pretty
scared. So helping families sort through all
of that this was and what fits their child
and what doesn't.
So one of my very common conversations with
families is you are going to read a lot and
some of it is going to fit and some of it is
not. Don't even accept, don't go where it
doesn't fit. It is okay to not have to think
in that direction. But they can use
professionals to kind of be that thermometer
of what's going to fit.
And then try to find resources. And this is
really challenging. There is just a lot of
resources out there. But families seek
information and we should help them in that
regard and also try to get that family to
family support through -- that we know is
helpful for all families. I will put a
little plug in for Hands & Voices, has a deaf
plus area on their website, and one of the
challenges is that even though you can
connect families, they are pretty busy with
children's needs, particularly deaf plus. So
that can make it a little bit more
challenging just to even have the mental
energy and strength to, you know, connect and
reach out.
One other statement on that is sometimes we
can give families information and say call
them or reach out to them, but not every
family is comfortable doing that. So, you
know, just because we give information, that
may not be the personal approach that one
family may have.
>> I'm going to actually -- we are running
out of time, but let me just say, Christine
covered this. One of the really great things
about the interventions with children who are
deaf and autistic is the interdisciplinary
nature, and there are some things that have
really, really good efficacy. And I want to
actually point to this early start Denver
model, which was designed by Sally Rogers, I
don't know how many of you are in the -- have
covered Early Interventions for children with
autism, but I was fortunate enough to be
starting in Denver when -- with the Early
Intervention program back in the 1970s, and
Sally Rogers was starting the early start
Denver model, model techniques that she is
now sadly no longer this Colorado, but she
has just gone on to do wonderful things with.
And one of the things that has been really
helpful is that when we had a child who was
autistic, she would consult with us and help
us design Early Intervention therapies for
these children, and we had this -- actually,
the first child she consulted on was a
hard-of-hearing child who was on the spectrum
and we could not -- the child could hear
everything, but we could not get spoken
language going. No matter what kind of
auditory skills we were doing. The mom
decided that maybe she should try sign
language and maybe she could get some
communication going with sign language. We
could not get him to imitate a sign. He
would not look at our faces, he would not
look at the imitation. We were just
completely stuck. The auditory was going
nowhere. We were trying visual to visual, it
was going nowhere.
I'm sure you have kids like this that you
work with. Sally helped us develop a plan
where we started out with the sign language,
we started out actually behind, sitting him
on our lap and we only chose signs for which
he didn't have to look at our face. Right?
And so they were from the neck down,
basically. So more, ball, milk, those kinds
of signs. And then we were behind him moving
his hands with the things in front of him.
So there was a ball in front and we would
move his hands for ball, there was milk, and
we would move his hands for milk, we would do
want every time and then his parent would
give him -- and we would basically be giving
him tactile support for doing the signs.
And he immediately started signing. So we
were able to move him from going behind him
to moving to the side so he would look to the
side when we started doing the signs for the
imitation to gradually being able to actually
have a communication. He wasn't looking at
our face, he was looking at the sign. And
the exciting thing was we were able to move
him up with every game that he made in
communication so that he became a spoken
language communicator. So we used the sign
as a facilitator to get the spoken language
going.
And it turned out that he in addition also
had oral apraxia, so part of the reason we
were not getting the speech going is
because -- but you know what? At 2 you don't
have really good tests for oral apraxia and
then a child who doesn't have any speech or
language plan and won't imitate anything at
all. Right? You can't get any spontaneous
vocal production.
So he was really a success story for us, but
it took this kind of collaboration. Sally
didn't know anything about deafness, we
didn't know anything about autism, and there
were a lot of videotapes and observations,
but this is the kind of thing that you want
to develop. You want an interdisciplinary
team. We are now using her early start
Denver model. Because if you are fortunate
enough to diagnose kids very early, this
model is really a wonderful model. It
basically gets everybody who is doing
intervention, no more than 3 well-defined
goals. And those 3 well-defined goals are
for at least a 6-week treatment with about 15
to 16 hours of treatment a day -- a week.
And so what's nice about this, the early
start model, it is based on home intervention
with the parent as the driver. So the parent
actually manages the program with the
autistic specialist and in our case with our
EI provider.
And what they do is they come up with what
their most pressing need is, and so then
whatever the number one thing is, that's
where the team sits and works out what do we
need to do to get the child to not do
whatever he is doing, biting, kicking or, I
mean, it can be really at a very low level in
the beginning.
Every therapist working with the child, so
the EI therapist, the audiologist who, if
they are doing any follow-through with
hearing, the physical therapists, a lot of
times these kids have multiple people, but
they all work on the same goal. And they
all -- so the physical therapist does it with
the physical therapy, speech therapist does
with speech therapy. If they are fortunate
to have other things, the mom then
supplements whatever the professionals are
doing for the extra hours. So she would be
able to develop the lesson plan for how she
is going to carry it on, and she does it
intensively for 6 days a week, at least 3
hours a day.
But it is doable. She can figure out, you
know, I can't do 3 hours all day long, but I
can do morning an hour, afternoon an hour,
and I can do an evening an hour, if it is not
the witching hour, right? And I don't have
to worry about Tuesdays because Tuesdays, at
least an hour and a half of it is with the
Early Intervention provider and they are
going to supplement whatever the goals are.
We have actually had some really positive
improvement with the kids using this. It is
a highly structured ABA intervention, but at
the beginning actually with a lot of these
children because they have no communication
at all, that's exactly what you need and
things get -- as they progress, they learn
faster.
We have a group of autism specialists who are
learning more about deafness. We have Debbie
Mood, who unfortunately couldn't come,
psychologist trained at Gallaudet, she does
all the ADOS (sp) diagnoses. In the seminars
article, if you have a psychologist that
doesn't know very much about deafness or has
some knowledge, I would have no knowledge.
But ADOS, adapt it for deaf and
hard-of-hearing children, and you need
trained psychologists to work with you.
Otherwise, we can't get the diagnosis, right?
There are more people who are early start
Denver model, there is one for parents, one
for professionals, and there is a training
program for professionals to get trained in
the early start Denver model. There are also
many other autism techniques, and I
completely went over.
So we are at time. Just wanted to leave you
with at least some things on intervention
that you could take home. Sorry.
>>AMY SZARKOWSKI: I have some copies of the
summary article. We can also go down to
the -AUDIENCE MEMBER: (off mic).
>>AMY SZARKOWSKI: The first one is Seminars
in Speech and Language, special edition, and
there is the website information. This is
posted for -- on the EHDI website so you can
access it there. And I have some paper
copies. I have 20 paper copies of that
article. First come, first serve on those,
and these are other options for resources for
you. We are happy to stay and answer a few
questions. Thank you so much for coming.
(Applause)
(Session concluded)