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Deafness with Autism: A School Age Communication Perspective

Deafness with Autism: A School Age Communication Perspective
Michelle Leach, MS, CCC-SLP, Valeri LeBeau, MS, CCC-SLP
November 17, 2014

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This article is sponsored by Advanced Bionics.

Editor’s Note: This text course is an edited transcript of a live webinar. Download supplemental course materials.

Valeri Le Beau:  My name is Valeri Le Beau, and I will be your host today. We hope that our webinar series, Perspectives on Deafness with Autism: Changing How We Think, will help shine some light on deafness when it coexists with autism. This special online series, sponsored by Advanced Bionics, explores multidisciplinary perspectives in an effort to help change and add to how we think.  Michelle Leach and I will discuss some of the unique communication challenges that come with a dual diagnosis of deafness and autism.  We will discuss strategies for assessment and intervention. 

Now I would like to ask you all a question and you can respond by clicking "true" or "false" in the poll window.  Children who are deaf with autism spectrum disorder do not benefit from cochlear implantation.  The correct answer is False.  Research has shown that these children may benefit from cochlear implantation. 

Learning Objectives

Michelle Leach:  Today we will discuss communication assessments including obtaining a thorough case history review and identifying unique assessment strategies to use during evaluations in order to write appropriate intervention goals.  We will discuss intervention strategies that can be used to meet success during therapy sessions, and we will describe the importance of a multidisciplinary team approach to meet the needs of children with deafness and autism spectrum disorders (ASD). 

Autism Spectrum Disorder

I would like to begin by providing an overview of the core characteristics of ASD from the revised Diagnostic and Statistical Manual (DSM-5) criteria.  ASD is marked by extreme unresponsiveness to other people, deficits in social-emotional skills and reciprocity, severe communication deficits, and highly rigid and repetitive behaviors, interests and activities.  These symptoms must be present in multiple settings and appear early in life before the age of three.  Symptoms must cause clinically significant impairment in social, occupational, or other areas of functioning.  According to the Centers for Disease Control and Prevention (CDC), approximately 1 out 68 children in the United States has ASD with males having a greater likelihood of developing this disorder by a ratio as high as five to one.  The CDC estimates that over 2 million people in the United States are affected by this (Maenner et al., 2014). 

When we begin looking at the dual diagnosis of hearing loss and ASD, it is important to note that approximately 40% of children with hearing loss have an additional disability.  A study that looked at the dual diagnosis of hearing loss with ASD found that children who exhibited profound hearing loss had a disproportionately higher percentage of a dual diagnosis than a child with less severe degrees of hearing loss (Szymanski, Brice, Lam, & Hotto, 2012).  There are a limited number of studies that are looking at the incidence rate, but the range in the existing literature of a dual diagnosis was exhibited by approximately 1% to 6% of children who are deaf or hard of hearing.  I have listed some studies summarizing the incidence rates of hearing loss with ASD, and as you can see, there is a wide range.

  • Rosenhall and colleagues (1999)
  • 1.6% unilateral
  • 7.9% mild to moderate
  • 3.5% profound
  • Gallaudet Research Institute (2010)
  • 1 in 59 children with hearing loss receive services for ASD
  • Jure, Rapin & Tuchman (1991), 5.3 %
  • Levy et al., (2010), 1.7%

Hearing Loss and ASD Comorbidity

With implementation of newborn hearing screening in the United States, the age of diagnosis for hearing loss in children has decreased over the years.  With up to 40% of children with hearing loss having an additional disability, the early identification of autism in this population is crucial as language development can be significantly impacted (Jareen Meinzen-Derr  et al., 2014).  Making this diagnosis can be challenging because of the complexities of determining whether the language delay or delay in communication is a result of the hearing loss or the co-morbid diagnosis of autism. 

Even though there is a lack of literature regarding this population, we have begun to identify children with a dual diagnosis.  We have seen that this delayed diagnosis is often occurring and that children are being missed.  Children who have severe hearing loss and children who have more severe ASD symptoms are typically diagnosed earlier.  A 2014 study (Meinzen-Derr, et al.) reviewed that the CDC in 2008 reported that the average age of diagnosis of ASD in children with normal hearing was 48 months, while the average age of diagnosis of autism in children who had hearing loss was significantly delayed at 66.5 months.  Children with more profound hearing loss and children who have cochlear implants were diagnosed sooner than children with lesser degrees of hearing loss.  As providers who are working with children with hearing loss, we may be on the front lines of identifying red flags from delays that are signs of a co-existing diagnosis on the autism spectrum scale. 

When we are evaluating the communication and listening skills of children with hearing loss, identifying factors and signs that this co-morbid diagnosis exists allows us to give the family appropriate prognosis, make appropriate referrals, and provide appropriate interventions for the child.

Communication Assessment

Where do we start?  For the school-age population, we are considering ages three and up.  It is ideal to start with a thorough review of the child’s medical and educational history prior to their evaluation.  The ability to review this information before seeing them for the first time allows us to identify any areas of concern or red flags that may require additional probing or additional information from the family.  When reviewing this information, we can begin to identify areas of concern that may be used to differentiate typical behaviors for a child with hearing loss from identifiers that are more on the spectrum of autism.  We are going to take a comprehensive medical history review inclusive of pregnancy and birth history.  We are also going to look at hearing history and amplification and pay special attention to some indicators that may be red flags for us.  Some questions we may want to ask are: 

  • Does the child have consistent use of their hearing technology? 
  • Do they have extreme difficulty with sensations associated with making ear molds? 
  • Does the child have any aversions to a particular wearing style, either with their cochlear implant or with their hearing aids?

I worked with a child who was unable to tolerate the light sensation of a longer cochlear implant cable with a Neptune speech processor when it was attached to his shirt, but when the cord was made to be shorter and he was allowed to clip it to a baseball cap, it allowed him to develop full-time use of his cochlear implant.  That tactile defensiveness regarding his hearing technology was a bit of a red flag for us.  Other questions to ask are regarding the child’s perception of loudness include:

  • Does the child have an increased perception of loudness that is different than another child who has a cochlear implant may experience? 
  • Are there sounds that are particularly aversive which the child will actively avoid?
  • Are there sounds that may cause the child to become upset when exposed to them? 

Another consideration for children with cochlear implants is if they have increased difficulty compared to other children of accepting changes and increasing implant stimulation levels. 

We also want to consider history of vision testing with these children.  There have been research studies showing that parents of children who have been later diagnosed with autism spectrum disorders indicated that they had concerns regarding their child’s hearing and vision, even prior to the first birthday. 

It is important to consider any previous evaluations, including any additional diagnoses that may be present and affecting the child’s overall development.  Be sure to conduct a thorough review of the child’s educational history. 

Developmental Milestones

Paying special attention to the social and emotional development milestones of the child can provide us additional areas of exploration.  We would expect a child who is deaf to exhibit appropriate eye contact; they may even be more visually aware than a child with normal hearing to compensate for their decreased listening skills.  We would expect a child who is deaf to enjoy physical contact such as hugs and kisses, tickling games, and enjoy playing with other children, even taking turns and sharing their toys.  For a child on the autism spectrum, we do not expect them to have typical eye contact.  They may pull away from signs of affection.  Children on the spectrum may appear to be disconnected and uninterested in other children.  They may seldom initiate play with other children and struggle with turn-taking during play.  Children on the autism spectrum may have difficulty developing the symbolic use of objects, and they may exhibit delayed or absence of the development of pretend play skills. 

We also want to give special attention to communication developmental milestones.  A child with hearing loss may have language delays, but we would expect them to display the use of nonverbal communication strategies, such as gestures and pointing.  We would expect them to exhibit joint attention.  Children who are deaf will initiate communication, and they will communicate their feelings through the use of facial expressions.  We also expect them to show the use of social language and to initiate conversations appropriately, including taking turns in the conversation, maintaining topics of conversation, and ending conversations.  Children on the autism spectrum have difficulty with many of these skills.  They have difficulty with prelinguistic communication, such as pointing and joint attention.  They may not communicate their feelings through the use of words, facial expressions, or with the use of sign language.  We would expect them to have difficulty initiating and maintaining a conversation appropriately. 

Children on the autism spectrum may also demonstrate atypical use of language.  This may include stereotypical or repetitive phrases that they use in a nontypical way.  They may exhibit echolalia.  They may also demonstrate the use of scripted language.  They may speak or replay language that are scripts in their head from commercials, TV shows, or other scripts that they have previously learned.  They may demonstrate talking in the third person about themselves and pronoun reversal.  Children with ASD typically have difficulty interpreting nonliteral communication.  They have difficulty with jokes, figurative language, and figures of speech.  One hallmark characteristic of children on the autism spectrum is not being able to see from someone else’s point of view. 

Behavioral Characteristics

In our case history review, it is also important to pay special attention to any behavior characteristics that may indicate something else going on.  Children who are deaf may have preferences, but may not be rigid about them.   They accept changes in routines.  They may have behaviors such as tantrums regarding their difficulties in communication, while children on the autism spectrum may exhibit strong reactions to changes in routine.  For example, if you change the room for your hearing testing or you change to a different booth, you may see an extreme reaction that a typical child who is deaf would not necessarily exhibit. 

A child on the autism spectrum may exhibit interests or be fixated on certain objects and toys.  For example, they may only want to play with toys that have wheels, only read or talk about topics such as trains.  Children on the autism spectrum may exhibit tantrums that include self-injuring behavior, such as biting themselves, banging their heads or pulling their hair.  Some children with ASD will experience self-stimulating behavior including rocking, humming, or singing, but these do not necessarily serve a communicative purpose; rather, these are behaviors that they use to stimulate their own sensory system.  Children on the spectrum may exhibit a higher avoidance or preference to certain textures, lights, or sensations compared to children who are not on the autism spectrum. 

Additional Considerations

Carefully consider the information provided by other professionals who may have evaluated the child and acknowledge the child’s functioning across multiple environments and settings.  The role of observation during the assessment is ongoing and is crucial for planning an effective intervention program for a child with a hearing loss who may also exhibit characteristics or a diagnosis of ASD.  You may obtain more information about the child’s communication abilities from your observations and from criterion-referenced assessments than from standardized testing.  Criterion-referenced evaluation measures can provide information regarding gaps that may exist in language development, as well as communication and social skills that may need to be addressed in intervention. 

When conducting your assessment, flexibility is important.  With standardized testing, you may have to consider alternative administration procedures to obtain the information that you need.  You may also have to utilize tests designed for younger children to obtain planning intervention materials. 

It is also important to take into consideration the listening age of the child versus the chronological age.  If a child has a listening age of two years, they may be able to assess and use the test designed for a child at the language level of two years, or you may have to go down to a lower language level assessment. 

Areas of Assessment

Multiple areas of communication language and listening are assessed in a typical evaluation.  Traditional standardized testing can be given, if appropriate.  These tests are the Preschool Language Scales (PLS-5), Clinical Evaluation of Language Fundamentals (CELF-5), Expressive One-Word Picture Vocabulary Test (EOWPVT), and Receptive One-Word Picture Vocabulary Test (ROWPVT).  These are tests that evaluate the use and the structure and function of language. 

We want to look at the child’s listening skills as well.  A few possible intakes include the Infant-Toddler Meaningful Auditory Integration Scale (IT-MAIS), Cottage Acquisition Scales, and Functional Auditory Performance Indicators (FAPI).  Measures designed for younger listeners can provide a hierarchy of skills to address if you find gaps in school-age children who may need to go back and develop skills at earlier listening levels. 

When evaluating listening skills, observations are key.  If a child does not respond to an auditory stimulus, such as their name by turning their head to maintain eye contact upon hearing it, there may be another way to evaluate that.  Do they respond in other ways?  Do they change their facial expression or make an eye shift when they hear their name?  Do they turn away?  Do they respond verbally? 

I worked with 6-year-old child who had cochlear implants and a diagnosis of autism.  He exhibited limited eye contact.  He was verbal.  Every time you would ask him to respond to his name, he would ignore the first two attempts and then disgustedly respond, “What?” as, “What do you want?  You are calling my name.”  That was considered a response for him.  The goal was to shape that into a more appropriate response. 

Every time I sang the clean-up song with a different child, as a cue that it was time to pick up the toys, he responded, “Unh unh.”  We knew he understood the song because he gave the same response every time.  We knew he had the auditory skills to identify what the song meant, and this response was his way of communicating that he was not through with a task and he did not wish to conform to what we were asking him to do. 

Another consideration when evaluating the listening skills of children is if the child needs additional or extra time to respond to the auditory information that you are presenting.  Children who are on the autism spectrum often also have associated processing difficulties.  If you have a child who is deaf, they may also require additional wait time while processing information they are receiving.  Think about whether the child responds with auditory only cues the first time, or if they need multiple presentations before giving a response.  Keep moving up the hierarchy from there.  Does the child only respond when given a visual or gestural cue?  This helps you determine their current level of functional listening skills whereby you can plan your intervention to move them up the scale.  We could continue an entire conversation regarding the assessment of language and listening skills. 

Social Language

I also wanted to provide you with some tools that can be used to assess social language, which is a marked characteristic of children who have a dual diagnosis.  These tools are helpful for both diagnostic purposes and intervention planning for children who are preverbal or nonverbal.  One tool that could be helpful is the Do, Watch, Listen, Say tool by Kathleen Quill (2000).  This assessment is broken down into social skills, play, group skills, and community skills.  It looks at general play and behavior, and the level of current functioning and what skills are needed for further development.  Solitary play evaluates how the children use objects and toys.  Are they able to develop symbolic relationships?  Does a child play cooperatively with another child or do they play in isolation?  The Social Play Record is another tool that can identify social play stages and provides which processes or skills currently exist.  It also includes an ongoing curriculum for the development of play skills. 

Nonverbal Children

For nonverbal children, it is very important to assess the level of communicative intent.  Does the child have the desire to communicate, and do they initiate this communication?  Communicative intent/desire is the foundation for everything you are going to do in therapy.  One informal way to look at this is by using Weatherby and Prizant’s Communication Temptations.  These are strategies that can used to informally assess and initiate a desire to communicate.  Some of the temptations include eating a desired food in front of the child without offering them any.  You will weigh that by how much of a fit the child throws.  You can open a jar of bubbles, putting the lid on tightly and seeing if they initiate opening of the bubbles.  Those types of activities are to stimulate communication. 

It is also important to see if the child understands cause and effect.  In terms of initiation, what form does a child’s communication take?  Do they use verbal communication?  Do they use proximity cues by moving their body closer to a desired object?  Do they use gestures?  Do they use eye contact?  Figure out the function of the child’s communication.  Are they using communication to request?  Are they protesting?  Are they greeting?  Are they gaining attention?  All of these informal cues will help you form your guidelines for the next phases.

Verbal Children

There are some standardized measures that can be used to help assess social language in the verbal child.  The Children’s Communication Checklist-2 is designed for ages 4 to 16 and can be used to identify pragmatic language deficits.  It may also identify children who need further comprehensive evaluation for ASD.  The Comprehensive Assessment of Spoken Language (CASL) is a standardized test that has a pragmatic judgment subtest and also has a supralinguistic subtest to look at abstract language.  The Test of Problem Solving (TOPS) can be used to get an overall view of the child’s pragmatic language abilities.  It also looks at reasoning skills and has a version for children and adolescents.  Last is the Social Language Development Test, which is for children ages 6 through 18.

Some informal rating scales for the child who is verbal include The Social Play Record and the Social Thinking Dynamics Assessment Protocol.  These are assessments are not normed on children who have hearing loss and autism, but they provide a good view of where the current functioning level is and what the next level of development should be.  This assesses higher level social thinking skills and analyzes each area and gives tools for remediation developing further skills. 

As a hearing health professional, our role is to speak up and to trust our instincts when we think that the child may have any type of developmental delay or may be exhibiting signs on the autism spectrum.  Discussing the concerns from the evaluation with the child’s parents and documenting them will assist in obtaining the appropriate services and interventions for the child.  When discussing the results of the evaluation, it is important to address the areas of strengths for the child and give the family positive feedback, as well of areas of need.  We can say to the family that we are concerned about language skills and we feel like it is not typical for a child with hearing loss.  We can say that we feel that there may be something additional going on.  We can then suggest referrals to other professionals, such as occupational therapists or developmental psychologists to see how we can address these issues and close the gap in language and listening development. 

It is also important to acknowledge to the family that these skills can be targeted proactively through treatment, even during the waiting time while we are obtaining the additional referral appointments, regardless of an additional diagnosis for this child.  The direction of treatment is going to be the same, because the child is giving us the starting point, and then we progress to the next level. 

Therapy and Interventions

Valeri Le Beau:  When we are thinking about interventions, it is important to remember the three core symptoms of ASD, which includes the deficits in social interactions, communications impairments, and restricted or repetitive behaviors.  Today we are focusing on communication, which includes social communication.  There is a wide range of abilities within this population of children with deafness and ASD.  Today, my objective is to provide you with a broad overview of unique communication considerations and interventions as we work with school-age children with this dual diagnosis. 

What is Communication?

Communication focuses on how people use messages to understand each other.  A communication partner or a communicator puts thoughts into words or gestures, and then we transmit that message using a communication channel which might be speaking, signing, e-mail, text messaging, et cetera.  That communication channel then goes to a communication partner.  The communication partner then has to decode the message and apply meaning to them.  For children with deafness and autism, this is where the breakdown occurs.  There is difficulty initiating and sending a thought into an effective communication channel that can be decoded and understood easily by a communication partner.  Our role as professionals working with these children is to identify where this breakdown occurs in communication and then teach effective communication channels that can be used to make thoughts understood by a communication partner. 

Setting the Stage for Therapy

Each therapy session can be thought of as a dynamic assessment.  We are constantly assessing skills, and our goal is to determine the rate of growth in auditory and communication skills.  First and foremost, consider the logistics of setting up your session.  Can you establish a therapy routine that is supported by visuals?  Remember that many children who have an additional ASD diagnosis are very driven by routines and rituals.  If they know what to expect and can predict what will happen during therapy, it can help decrease some of those behaviors associated with the stress of not having control or understanding what is happening. 

You could also consider where your therapy should take place.  I would recommend choosing places where communication and learning naturally happen.  That might mean taking it outside of the therapy room into other naturalistic environments.  We should also consider who should be involved in therapy.  When working with children with complex needs, including children who are deaf and have ASD, co-treatment really often makes sense.  It requires the consideration based on the individual needs of the child.  For example, are we managing sensory behaviors?  We might consider co-treating with an occupational therapist or behavioral therapist.  Would it be beneficial to co-treat with music therapy or art therapy because a lot of communication naturally occurs in these setting?  If social skills training is needed, maybe we should co-treat in a mainstream classroom with trained peer models and partners. 

Prognosis for Language Development

When defining therapy and intervention goals, it is helpful to understand the prognosis for a given child.  When making a prognosis for language development, here are a couple of points to consider.  Many parents of children with autism have been told that if their child is not speaking or communicating by four or five, then they are not likely ever to do so.  There was a study published in Pediatrics (Wodka, Mathy, & Kalb, 2013) showing that children with ASD who present with severe language delays at four years can be expected to make notable language gains.  Why is this important?  Most children with hearing loss are identified with ASD after four years of age. 

It is important for us to understand the prognosis for children with little language who have deafness with ASD that come to us at four years or later.  The Wodka et al. (2013) article highlights the important predictors of language acquisition, nonverbal intelligent quotients, and social skills.  This suggests that treating these areas, especially beginning in early intervention, will help promote language.  We should also consider a child’s hearing age.  This is a term we use to give perspective to progress by comparing hearing experience with language learning.  Hearing age begins at the time that a child begins wearing their device.  For example, a child receives a hearing aid or cochlear implant at one year of age.  Now they are two years of age.  We might say that they have hearing age of one year.  If a child wears their hearing aid or cochlear implant only half a day, we can expect half a day of listening and language growth.  Consideration of hearing age will also contribute to our prognosis for language development. 

In summary, we can use nonverbal intelligence scores, social engagement, and hearing age to guide and predict outcomes for language development in this population.  Research has shown that children with a higher nonverbal intelligence with higher incidences and observed social engagement are more likely to have a positive prognosis for spoken language development (Wodka, et al., 2013).  When we look and consider repetitive or stereotypical behaviors, interestingly, these are not predictors for language development. 

Intervention Implications

We should be considering nonverbal intelligence and social communication when developing our therapy goals.  The development of social cognition strategies and theory of mind, or what we call perspective taking, should be part of the treatment goals.  Furthermore, we should expect progress at slower pace for children who have lower nonverbal scores or more impaired social functioning.  Always use developmental language progress as your guide.  Our goal is to close the gap between their hearing age and their language age. 

There is not a lot of research on ASD and deafness.  Meinsen-Derr and colleague (2014) performed a study with children with ASD who were deaf and hard of hearing, and they found there was a 40 month gap between their ASD and hearing loss diagnoses.  They found that 67% had severe to profound hearing loss, 58% received a cochlear implant, 38% used speech as their mode of communication, and 33% of the children who had cochlear implants used some form of augmentative communication.  In summary, the research shows that there is a higher incidence of severe to profound hearing loss with ASD.  The number of children with cochlear implants has been increasing.  The potential outcomes for auditory development will be variable.  Spoken language may not always be the outcome, even if a child has a cochlear implant or well-aided hearing.  We should consider the use of augmentative communication as complementary to auditory skill development.  I think the research also points to the fact that as professionals, we need to make sure that we increase our understanding of cochlear implants and auditory development to help the children who do have cochlear implants achieve their best communication potential. 

We need many tools in our toolbox as well as a flexible approach to auditory skill development.  Children with cochlear implants and other disabilities need more frequent monitoring of language, hearing, and communication progress.  We need to implement adaptive strategies including augmentative communication.  These should be considered when oral or sign language skills are not progressing.  They might augment whether it is an oral approach or a sign language approach, but we should always be monitoring this very carefully to note if we need to bring another tool into our box. 

We also need to consider outcomes beyond speech and language, such as quality of life.  The research tells us that language development was slower for children with developmental disabilities compared to typically developing deaf children with cochlear implants, which is not surprising to many of us.  However, additional research was done that said children with pervasive developmental disorder (PDD) and autism who were using cochlear implants progressed at half the rate as typically developing children with cochlear implants.  I think that is something to keep in mind when working with these children and making a prognosis.

You have likely already gathered from the basic research and implications that auditory and communication skills will take longer with this dual population then with children who have one of the disorders alone.   However, these skills can be developed successfully with more careful assessment and monitoring over time to track small changes in their skill development. 

Goals should be planned collaboratively with other professionals involved in their interventions, such as occupational therapists, music therapists, art therapists, and/or physical therapists.  For example, if a child has difficulty attending to a task, and we know that inattention to a task it makes communication learning difficult, we might involve an occupational therapist.  An OT might be teaching a child self-regulation by working on a swing.  Maybe we collaborate while the child is on the swing to intersperse communication skills like asking for more swinging or going faster or slower in the context of the sensory regulation activity that the occupational therapist is doing.  Overall when we are considering communication goals, they may include the following, again dependent on the assessment and what we have identified as the needs for this child:

  • Non-verbal communication skills
  • Joint attention
  • Emotions
  • Body language, gestures, posture
  • Point of view
  • Social communication skills
  • Initiation of communication
  • Topical conversational skills
  • Maintaining conversations
  • Pragmatics
  • Grammar & Syntax
  • Academic language based concepts
  • Understanding of abstract ideas, as they relate to communication
  • Vocabulary
  • Auditory skill development

Here are few resources.  Teach Me Language is an excellent curriculum for school-age children who are four years and older and have what they consider table-ready skills.  More Than Words is a Hanen curriculum.  That is an excellent resource for the younger school-age or toddler population.  Both books are helpful for parents as well.  Then there is Frost and Bondy’s PECS manual (Picture Exchange Communication System) is a must-have if you are working on developing initiation skills using picture exchange.  Speech goals are also appropriate for some students to develop clear articulation, but be aware that some children with autism also have an apraxia, which can impact their speech development.

Let’s discuss intervention strategies for children who are deaf and have ASD.  I am going to share a framework for interventions to guide you as you implement different methodologies.  Unfortunately we do not have time to discuss the different methodologies that are out there like ABA or Teach Floor Time.  In earlier webinars in this series, many of these have been discussed and described.  If you did miss these, they are recorded and can be viewed for free here on Audiology Online. 

When we look at intervention strategies, both deaf and hard of hearing children and ASD children have communication impairments.  Language interventions must go beyond amplification and speech language therapy.  Language interactions require adaptations to make communication and socialization accessible for these children.  The problem is that evidence-based practices for children with deafness and ASD do not exist.  However, we can borrow from those evidence-based practices from the field of autism.  That is what we are going to look at now.

Here are some intervention strategies that are unique and different from those that we might use with a child who is deaf and hard of hearing alone.  These are strategies for children with the dual diagnosis.  Stacy Jones Bock and Christy Borders have done some nice research in this area.  They identify four core strategies for a child with dual diagnosis.  This is what we will go over as the framework for intervention. 

The first step is to conduct a functional behavior assessment to identify the communication intent behind a child’s behavior.  The idea is that many behaviors are communication.  With that said, we should also consider that there are some behaviors that are just behaviors.  The next step is to teach functional communication.  We want communication to be socially acceptable and the emphasis of communication is on the function, not the form.  Not oral versus sign language, but what is the function of that communication.  Then we are going to identify effective reinforcers, use visual strategies and environmental supports, which have been proven in the research to be effective for children with deafness and ASD.  We know that they do understand their world through their eyes.  We also want to provide choice-making opportunities.  These practices are borrowed from ASD evidence-based practice literature and should be always considered when planning intervention. 

The first step again is functional behavior assessment.  This is where we start in order to develop effective communication interventions.  The goal is to discover what the child is trying to tell you through their communicative behaviors.  This will be your foundation for a functional communication program.  When we think about functional communication, what is functional communication?  Functional communication are forms of behavior that are used to express wants, needs, feelings, and preferences that others can understand.  Think about any typical developing toddler that you have worked with, maybe your own child.  Oftentimes, the “terrible twos” are called the terrible twos because children express a lot of behaviors to express their wants and needs.  Thinking about it in that light, behaviors can be used as communication when you do not have that communication methodology to use to communicate effectively and be understood by others.  Functional communication allows a child to express themselves without resorting to a problem behavior or a communication breakdown.  

When we think about functional communication, we teach functional communication to help a child communicate their needs in a more socially acceptable way which can decrease behaviors and increase meaningful communication.  Three components of functional communication must be understandable.  It has to be directed towards a person and it needs to be appropriate to situation and context.  Our task is to observe an identify communicative behaviors that a child is already using and then evaluate them within this framework.  Are they talking, gesturing, and signing?  Are they pulling, pointing or showing?  Are they touching an object?  Are they giving an object or picture?  Are they demonstrating hitting, kicking, crying or screaming?  Are they escaping or leaving?  Are they looking or demonstrating self-injurious behaviors?  Then we determine if they are understandable, if they are directed towards a person, and if they are appropriate to situation and context. 

When we are thinking about examining the functionality of communication, this is where we develop and teach functional communication, often referred to as functional communication training.  What functional communication training does is it focuses on understanding the function behind a behavior and teaching a socially acceptable and appropriate communication strategy.  The SETT framework was developed for augmentative communication systems, but after I looked at this, I feel that this framework can provide a guide for examining communication behaviors of a student and using those observations to guide and help us develop our communication interventions.  The SETT framework focuses on four distinct areas of observation to determine your starting point for communication interventions.  It looks at the student, the environment, the task, and the tools. 

When we look at the student, that requires us to know the child.  We need to focus on understanding how a child communicates.  Do others recognize the attempts the child makes to communicate?  Are other responding to the communication attempts?  When we look at the abilities assessment of the student, this requires interdisciplinary input and parent input.  We need to watch for communication behaviors or skills like joint attention, shared attention, gestural and verbal communication or pictures used to communicate.  We need to also look at the student’s individual motor and visual processing skills which will help us evaluate a type of communication system to use with the child.  We need to know why a student communicates, why they initiate a communicative interaction, or why they do not initiate at all.  Then we need to identify motivating opportunities to teach the value and power of communication.

When we evaluate the environment, we are identifying communication opportunities in natural environments and we note the who, the what, and the where.  Communication in an isolated setting does not generalize, and also if it is not motivating, why should we communicate?  We can make communication meaningful by teaching communication in natural functional, in the moment environments.  We should identify intervention targets that teach skills to build independence, skills that can be taught across multiple environments, which makes it more generalizable, and we should also use motivating reinforcers to teach communication.  The environment will also determine opportunities for social skills training as well. 

When evaluating a task, some of the things that we might look at are is there a language or is there vocabulary that goes with the communication opportunity?  Who are the potential communication partners?  What supports might be needed for success?  We should consider if there is enough vocabulary for interaction.  What is the communication function?  What are the requirements of the communication exchange or conversation, and is communication accessible to both communication partners?  Vocabulary interventions might be needed if there is not enough vocabulary to support and intervention.  In that case, we should have a range of meaning and function when we develop vocabulary that can be useful across environments and throughout the day.  We do not want just content specific to maybe an art class alone, but looking at what are other opportunities throughout the day for that child to discuss what happened in art class with other communication partners.  We want to have that vocabulary really generalize and be useful across environments.  Also when we are developing our goals, we want to work at the student’s present communication level, but always provide some teaching to the skills at the next level. 

Finally, we look at identifying the tools.  This is matching the right communication tool to the student based on the environment, based on what the requirements are for the environment.  Using a variety of communication modalities can be successful and is dependent on the needs of a specific environment.  We might be using a combination of voice, signs, pictures, gestures, voice output systems.  As an example, if a child is in a swimming class or going on a swimming outing, a low tech communication board for a child who uses that type of communication system might, or sign language, might be more effective than the use of a high tech expensive AAC device that cannot get wet.  That is just an example of how we need to be flexible in what tools we use in the box and that we might need to combine different modalities.  The research has shown that children with ASD are very successful using a variety of modalities. 

Whatever choices are made for communication tools, always remember to create opportunities for modeling use of the system within your session.  It might be beneficial to co-treat with an occupational therapist to help teach the skills needed to use communication tools.  That might be the ability to scan.  It might be specific motor skills, like using a finger to point to a picture or pulling a PECS picture off of a Velcro board, and then putting that into the hand of another person.  In my experience, working with an occupational therapist has been very helpful when we are modeling the use of these systems in training the child to use the system.  It is important to expand the therapy room to functional environments as well.  Consider community field trips or lunch time, music therapy, identify tasks that are functional.  When I did work with children who had hearing loss and autism, we were in a therapeutic day school.  We did have a lot of opportunities to get out into the community, but sometimes the children would earn money as part of their behavior program, and then they would go on campus to a local store to buy treats for snacks.  Oftentimes we would build the communication session around this trip to go spend their money to communicate.  That is just an example of how you can take therapy into functional environments. 

Research is also showing that teaching generalization from the beginning is a preferred method when a child also has ASD.  This is in order to support generalization across communication partners and settings.  Rather than teaching a skill in mastering in isolation and then generalizing to other environments, we begin at the top of that generalization and teach within the context of a natural environment and within a natural communication exchange.  Again, success is dependent on planning, collaboration, and ongoing support from all team members. 

Another important step is to assess reinforcers.  Reinforcers can provide the first communication opportunity or may be used to reinforce communication skills.  Evidence-based practices for children who have ASD have identified the positive effects that reinforcers have for teaching and changing behavior.  Tangible reinforcers can be thought of as a paycheck.  Most of us would not work for free and our paycheck is our reinforcer.  Reinforcers should be used more frequently when learning a new skill and given within half a second when the behavior is demonstrated.  In order to assess reinforcers, first, choose a small grouping of reinforcers.  Next, chart those items and responses. Place them on the table and record which one is chosen by the child.  We record the response to that, we remove it, and we replace it.  There is a worksheet for this that is helpful in Frost and Bondy’s Picture Exchange Communication System manual.  By assessing and recording reinforcers systematically, you can determine what is motivating for a student.  Ask what is motivating to the child.  You might need to do research and ask parents or teachers, or observe the child.  These are going to be very child-specific motivators.  Think outside the box.  They should be tangible, they might be edible, and they might be activities.  You should reassess these frequently to ensure the reinforcers are motivating the child.

We should provide and use visual strategies to support communication during our interventions.  Communication can sometimes be very transient.  It disappears quickly.  If I say or sign a word for a child with processing difficulty, this could disappear very quickly.  Imagine if you have an auditory processing disorder, verbal language may not be salient enough for you to understand and you may need an additional augmentation like sign language or other visual systems.  These may include creating calendars, First-Then boards, choice-making boards, vocabulary topic boards, multilevel communication books, and visual schedules to show there is a schedule change. 

This brings up to symbol systems.  When we are thinking about symbol systems, I love this book, Visual Strategies for Improving Communication.  It is important to determine a symbol that is appropriate for the child’s developmental level.  This is kind of a hierarchy of moving from 3D objects all the way up to black and white line drawings.  Then we also have to consider, if we are using a symbol system on communication boards or in a PECS system, the size, number, and arrangement as well.  Board maker symbols are convenient and great, but they are not a great choice for every child.  Some children need more than a line drawing and they do not have the cognitive skills to understand abstract line drawings.   They will need a more concrete symbol system.

True communication includes the ability to go beyond just expressing wants and needs to achieve social communication and social closeness.  We need to establish communication exchanges, back and forth, to establish that social closeness.  No matter what the cognitive level, social closeness is always our goal.  It is difficult to get this level because it is difficult to teach abstract thought or expressing opinions.  We should include strategies to make abstract vocabulary more concrete. 

When we think about learning to listen and auditory skill development, the same developmental progression of auditory learning applies.  We have to think about if speaking is a goal for the child if a hearing loss was not present.  When we look at that child with autism, we can isolate those characteristics for a moment and ask if this child did not have a hearing loss, do we think what we know about the child based on assessment that speaking might be a goal.  We should also consider the research that many children develop their speaking much later in life after four years of age and continue on through eight years of age to develop their ability to speak in sentences or phrase speech.  We also can use this developmental model for listening to guide our goals when developing a child’s auditory skills.  The auditory sandwich is also a great way to support this population because you begin with auditory, then we include a visual support, and then we go back to the auditory.  Remember that getting to that auditory only may not be a realistic goal.  Do not give up!  Give children the chance to develop this skill.  The research tells us that the potential is there; it just takes longer.  You might need to work closely with the audiologist and the OT to establish bonding and consistent wearing of the amplification or cochlear implant.  Be sensitive to the acceptance of wearing amplification or CIs.  Some of these children exhibit sensory difficulties with accepting the feel and tolerating the louder sounds in speech.  Progression through programs might be much slower in the beginning, but do not give up.  The developmental model will help guides us on where this child is to decide where we need to build their strengths and where their weaknesses are so that we can develop goals. 

What does therapy look like?  For therapy, we need to think outside the box.  We may require supports with visual, tactile, or augmentative communication.  Again, we should work in naturalistic environments and involve the family.  Development of auditory skills requires a flexible approach.  We might require the use of visual strategies for success.  A tip is that you should increase your wait time and response time, which means no talking or else that child has to begin their processing over.  Children with ASD frequently have processing problems and need increased processing time to respond, which is not different from children with hearing loss, but it might be more pronounced in a child who has hearing loss and ASF.  Provide those frequent breaks as needed to build your communication goals.  Provide cues for transitioning between activities using First-Then boards or schedules of activities, maybe an egg timer or a traditional timer.  Whatever works depending on the severity of the child’s disabilities and then refer back to parental goals and expectations.  Always begin with listening and speaking as the goal and then evaluate progress when we are developing auditory skills.  Then monitor that progress frequently and alter the approach when necessary. 

When we think in terms of IEP goals an collaboration, all professionals that are involved with child are part of the educational team.  These are both the school and clinic-based professionals.  Collaboration provides all professionals an opportunity to share information and strengthen those relationships and to ask questions. 

Communication among all team members is important for success of the child.  Parents should share the goals that they envision for their child with the team so that we can meet the child’s need appropriately and expectations are addressed realistically.  Again, it is important to talk about communication mode, classroom setting, and support services if the child is wearing cochlear implants and hearing aids.  These expectations should be documented clearly within the IEP.  Remember that support services may be needed and intensified as the child learns to adjust and bond with their new sound.  That should also be well documented in their IEP. 

Questions and Answers

What would make you ever decide to not pursue implant use?

I think that there is a variety of reasons that you might not pursue implant use.  Let’s take it from the very beginning.  First, if the child was not a candidate for cochlear implantation would be a reason.  If they did not have functional auditory nerve, if their hearing severity level is not profound and they are getting benefit from hearing aids, they may not yet be a candidate for a cochlear implant.  Also looking at the additional pieces through candidacy.  If you have a question about whether a child would benefit from cochlear implant use, a referral can be made through their audiologist for cochlear implant evaluation.  A series of evaluations are done by a multidisciplinary team to decide on candidacy.  That candidacy would then determine whether or not you should pursue use or if the child would be a candidate for cochlear implant. 

What if the child has already been implanted and is clearly distressed by the implant use and all strategies have been tried? 

I think if there is concern that the child is not tolerating their implant, that will require very close collaboration with the cochlear implant center and working with that audiologist to determine if there is any changes that can be made.  Ultimately, that decision would be the decision of the parents and the cochlear implant team to determine whether or not there are any adjustments to the child’s programs or working with the occupational therapist to determine if there is any type of sensory needs, and to determine the underlying reason that the child is really distressed by that implant use.  Communication will be key among all team members so that it can be very carefully evaluated.  Ultimately, that decision also needs to be made in conjunction with the cochlear implant center.   

References

 

Gallaudet Research Institute. (2010). Regional and national summary report of data from the 2009-2010 Annual Survey of Deaf and Hard of Hearing Children and Youth. Washington, DC: Author, Gallaudet University.

Jure, R., Rapin, I. & Tuchman, R. F. (1991). Hearing-impaired autistic children. Developmental Medicine & Child Neurology, 33,1062–1072. 

Levy, S.E., Giarelli, E., Lee, L-C., Schieve, L.A., Kirby, R.S., Cunniff, C.,…Rice, C.E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental & Behavioral Pediatrics, 31(4), 267-275.

Maenner, M.J., Rice, C.E., Arneson, C.L., Cunniff, C., Schieve,L.A., Carpenter, L.A.,…Durkin, M.S. (2014). Potential impact of DSM-5 criteria on autism spectrum disorder prevalence estimates. JAMA Psychiatry, 71(3), 292-300.

Meinzen-Derr, J., Wiley, S., Bishop, S., Manning-Courtney, P., Choo, D.I., & Murrary, D. (2014). Autism spectrum disorders in 24 children who are deaf or hard of hearing. International Journal of Pediatric Otorhinolaryngology, 78(1), 112-118.

Rosenhall, U., Nordin, V., Sandstrom, M., Ahlsen, G., & Gillberg, C. (1999).  Autism and hearing loss.  Journal of Autism and Developmental Disorders, 29(5), 349-357.

Szymanski, C.A., Brice, P.J., Lam, K.H., & Hotto, S.A. (2012). Journal of Autism and Developmental Disorders, 42(10), 2027-2037.

Wodka, E., Mathy, P., & Kalb, L. (2013). Predictors of phrase and fluent speech in children with autism and severe language delay. Pediatrics, 131, 1128-1134.

Cite this content as:

Leach, M., & LeBeau, V. (2014, November). Deafness with autism: A school age communication perspective. AudiologyOnline, Article 13001. Retrieved from: https://www.audiologyonline.com

 

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michelle leach

Michelle Leach, MS, CCC-SLP

Cochlear Implant Consumer Specialist, Advanced Bionics

Michelle Leach, MS, CCC-SLP, LSLS. Cert. AVT is an AVT  on staff with Advanced Bionics as a Cochlear Implant Consumer Specialist who has served families with hearing loss for many years.  She was previously a member of a comprehensive cochlear implant team and provided evaluations and auditory based therapy to both children and adults who utilized a variety of communication methodologies and hearing technology, including recipients of cochlear implant technology with additional special needs.


valeri lebeau

Valeri LeBeau, MS, CCC-SLP

Consumer Education & Rehab Manager, Advanced Bionics

Valeri Le Beau, MS-CCC-SLP,  is the Senior Rehabilitation Program Manager at Advanced Bionics.  Valeri brings a lifetime of personal and professional expertise to the field of hearing impairments.  Valeri received her undergraduate degree in Education for the Deaf and Hard of Hearing from Illinois State University.  She taught in a variety of educational settings serving children with hearing impairments and later received her graduate degree in Speech Language Pathology from Rush University, Chicago.  She practiced across the country in educational, private, and hospital-based settings, with an intense focus on providing services to children with hearing impairments.  Throughout her career, she has lectured, trained, and mentored on cochlear implantation and rehabilitation following implantation locally and internationally.  

 

 



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