We are excited to announce the following study on Selective Mutism:
Assessing Speech and Language skills in Children with Selective Mutism
Co-investigators: Evelyn Klein Ph.D, CCC/SLP and Elisa Shipon-Blum DO
**This study will take place at the Selective Mutism Anxiety Research and Treatment Center in Jenkintown, Pennsylvania  (NE of Philadelphia). 
**Frequently Asked 'Study' Questions 


This study has crucial implications for treatment of children suffering from selective mutism and for development of appropriate school-based accommodations and intervention.    

Children with selective mutism become mute and have great difficulty communicating when anxiety is high and comfort level is low. 
Social anxiety causes children to lack initiative in speaking. Some children are sent to speech-language therapy with a diagnosis of an expressive language disorder when in reality it is the child’s anxiety that is causing the communication impairment symptoms. 
Differential diagnosis is needed. More accurate information is essential to determine if a child with selective mutism has an accompanying speech-language disorder that is impacting effective communication.  Proper diagnosis is necessary so that the child can receive proper school accommodations and interventions. A false or missed diagnosis often leads to inappropriate school placement and misdirected treatment

"Based on clinical data at the SMart Center, children with SM who have a S/L disorder, tend to have either an expressive language disorder or a 
mixed receptive/expressive language disorder.   Symptoms tend to be exacerbated when anxious, such as a social setting where the child feels an expectation for speech or communication. However, the KEY is if a child has symptoms, when comfortable, such as at home, in their 'safe' environment as well as in social settings, then the child most likely does have a S/L difficulty. Since anxiety can mask many disorders, such as S/L disorder, if the symptoms exist solely in anxious settings and NOT in the home or safe environment, then the child's S/L symptoms (of hesitating with responding, saying 1-2 words in response to a question, having difficulty with open-ended questions, etc is most likely ANXIETY-induced and NOT an innate S/L disorder."  Dr. Elisa Shipon-Blum 

Aims of Study  (More detailed objectives)
---To determine the incidence of communication disorders among sample of children with SM.
---To determine if the child’s speech-language difficulty is anxiety-based or an actual receptive / expressive speech-Lang. disorder.
---To determine if parents can effectively administer selected speech-language tests to their children suspected of having SM

Study Methodology

View Parent Consent Form for study details

Eligibility:  
Children must be between 5-12 years of age
Child must have formal diagnosis of Selective Mutism 
A child with a past diagnosis of SM, but the child no longer meets criteria for SM are ineligible. 
Child must present with parent to the SMart Center in Philadelphia, Pennsylvania. 

 ***Interested in signing up for the study? 
FLYER for study

 

 

 

 

 

 

 

 

 

 


 

 

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La Salle University

School of Nursing and Health Sciences

Speech-Language-Hearing Science Program

 

 

STATEMENT OF VOLUNTARY INFORMED CONSENT

 

Assessing Speech-Language Skills in Children with Selective Mutism

 

By signing this paper, I am acknowledging my interest to take part in a study about selective mutism in children. This study is supported by the Selective Mutism Anxiety Research Treatment Center in cooperation with La Salle University Speech-Language-Hearing Science Program.

 

I, _____________________________ understand and willingly agree to participate in the Assessing Speech-Language Skills in Children with Selective Mutism Study. This study is intended to evaluate children suspected of selective mutism and will be conducted at the Selective Mutism Anxiety Research and Treatment Center ( Smart Center ) in Jenkintown , PA. The aims of this study are to determine if parents can be trained to effectively administer selected speech-language tests to their children and to help investigators determine if children’s speech-language difficulties are anxiety-based or an actual receptive / expressive speech-language disorder. Children and their parents will be randomly assigned to one of two groups based upon order of assessment: parent testing first followed by professional testing or professional testing first followed by parent testing. The testing materials and tasks will be the same in both situations.

 

All information will be kept strictly confidential. Names of participants or any identifying information will not appear in any published reports or in any documentation. Participation is completely voluntary. Parent and children will not be placed at any risk and are free to leave the study at any time. There is no penalty if you choose to withdraw from the study.

 

This study has crucial implications for treatment of children suffering from selective mutism and for development of appropriate school-based accommodations and intervention. Children with selective mutism become mute and have great difficulty communicating when anxiety is high and comfort level is low. Social anxiety causes children to lack initiative in speaking. Some children are sent to speech-language therapy with a diagnosis of an expressive language disorder when in reality it is the child’s anxiety that is causing the communication impairment symptoms. Differential diagnosis is needed. More accurate information is essential to determine if a child with selective mutism has an accompanying speech-language disorder that is impacting effective communication.  Proper diagnosis is necessary so that the child can receive proper school accommodations and interventions. A false or missed diagnosis often leads to inappropriate school placement and misdirected treatment.

 

At the beginning of this study, parents will be trained by a certified and licensed speech-language pathologist or supervised graduate student to administer speech-language tests. At the same time the parent is administering these tests, the evaluator will view the testing through a one-way mirror for later comparison and scoring. For children who cannot comply with the testing on site, parents may attempt to complete the assessments at home, videotaping the session for later analysis. Parents in this study will also complete questionnaires about their child’s development and behavior in addition to providing a social communication history.

 

After the session is complete, parents may schedule a brief follow-up session (free of charge) to review and discuss their child’s assessment results, provided both verbally and in writing. The information will provide suggestions for enhancing communication and follow-up recommendations.

 

Participation in this study does not imply that the child will be undergoing specific treatment at the Smart Center . Communication with parents will take place after the
study during the study follow-up visit.


If you have any questions, feel free to contact:

 

Evelyn R. Klein, Ph.D., CCC-SLP

Certified & Licensed Speech-Language Pathologist & Psychologist

Associate Professor

klein@lasalle.edu (email address)

215-951-1433 (office)

 

“I agree to participate in this study with my child and any questions I have about the study will be answered prior to participating. I may direct additional questions regarding study specifics to the evaluators at the follow-up visit.  I agree to participate in the selective mutism study described above and may withdraw at any time.”

 

___________________________     _________________  

Signature of Parent Participant                                  Today’s Date

__________________________    __________________

Child’s Full Name                                         Child’s Date of Birth

_________________________________     ________________________

Phone Number (best time to call)                  E-mail address

 

Please sign & return the entire document to: Dr. Evelyn Klein, La Salle University , 1900 West Olney Ave. , Wister Hall, Philadelphia , PA 19141

Please keep a copy for yourself!

 

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The following three points highlight the objectives of this research.

(1) To determine if parents can effectively administer selected speech-language tests to their children suspected of having SM, parents
will be trained by a certified and licensed speech-language pathologist or supervised graduate student to administer and score three tests (TNL,PPVT-4, EVT-2) and a brief measure of auditory memory. At the same time the parent is administering the tests, the speech-language pathologist (SLP) will be viewing the testing through a one-way mirror and also video-recording it for later comparison and analysis. For those children who do not comply with this on-site testing, parents may attempt to complete the assessments at home, videotaping the sessions for later appraisal. It is noted that children with SM will likely feel less anxious when tested by parents at home than at the clinical center. It is hypothesized that parents can be trained to be effective evaluators of their children with SM if given direction and training.

 

(2) To determine the incidence of communication disorders within this clinical sample, a certified and licensed speech-language pathologist will interpret the findings from the assessment to identify children with an actual speech and/or language disorder. It is hypothesized that a number of children with SM will have an actual communication disorder.

 

(3) To determine if the child’s speech-language difficulty is anxiety-based or an actual receptive / expressive speech-language disorder, two matched and randomly assigned groups of children will be compared using analysis of variance. Group 1 receiving parent testing followed by professional testing and group 2 receiving professional testing followed by parent testing will be compared regarding speech-language testing results. It is hypothesized that this type of randomized group assessment will more accurately determine the impact of anxiety on communication. It may be that a number of children with SM actually score as ‘false positive’ for speech-language disorders when the results may be due to anxiety. A false diagnosis often causes inaccurate school placement and/or implementation of improper services as well as misdirected treatment.

 

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STUDY METHODOLOGY:

This study takes place at the Selective Mutism Anxiety Research Treatment (SMart) Center specializing in the diagnosis and treatment of children with selective mutism, located in Jenkintown , PA. Parents with children suspected of having selective mutism who are interested in obtaining information about their child’s speech-language skills (involving speech production, vocabulary, narrative, and pragmatic language) may decide to participate in this study. Informed consent is required for participation in this study and all information is kept confidential and anonymous. This study requires Institutional Review Board (IRB) approval from La Salle University .

 

At the start of the study, each parent receives a brief training session to learn how to administer and score the Test of Narrative Language (TNL) (Gillam & Pearson, 2004), the Peabody Picture Vocabulary Test (PPVT-4) (Dunn & Dunn, 2007), and the Expressive Vocabulary Test (EVT-2) (Williams, 2007), prior to testing their child. During this time, each child will have an opportunity to view videos, play with games at the SMart Center , or sit with an accompanying family member or friend.

 

Completion of the assessments takes approximately 1½ hours. Intermittent breaks are planned. In addition, questionnaires from the Behavior Assessment System for Children (BASC-2) (Reynolds & Kamphaus, 2006) and the pragmatic protocol from the Clinical Evaluation of Language Fundamentals (CELF-4) (Wiig, Secord, & Semel, 2003) are also completed by parents and teachers prior to the formal testing time. Additional case history information, secured during prior formal testing (SM-CDQ), will be available, as agreed upon by parents. The total testing time may run up to 3 hours given both parent and professional administration.

 

             Parents and their children will be randomly assigned to one of two counterbalanced groups designated by order of the first evaluator. Group 1 receives testing by the parent first and then the same measures are administered by the professional who is previously unknown to the child (a certified and licensed speech-language pathologist or supervised graduate student). Group 2 receives testing by the professional first and then the same measures are administered by the parent. All testing is audio and videotaped for later analysis.

             At a brief follow-up session, parents will receive a brief interpretation of the assessment in writing, and have an opportunity to discuss the results if they choose.  Suggestions will be provided for enhanced communication.

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If interested in signing up for the study, 
please read over and understand the following Frequently Asked Questions and information below. 

  • YOUR child must have Selective Mutism.  (Speak in at least one setting, mute in at least one other setting).  * Children who have past diagnosis of SM but no longer meet the criteria for SM are not eligible for the study. 

  • Having a prior diagnosis of SM is mandatory.  (Children who do not have a formal diagnosis are ineligible for participation. 
    For those previously diagnosed, a  brief screening assessment will be done to confirm diagnosis.  If there is a doubt in diagnosis, the child will not be able to participate in the study)

  • Your child must be between the ages of 5-12 years of age. NO exceptions can be made.

  • You must be able to present to the SMart Center in Jenkintown, PA (outside of Phila.).

  • There is no reimbursement of travel expenses.

  • Be willing to spend 2 1/2 -3 hours to participate in this study.  (This includes: -  Warm up time in the office setting, Brief parent training,  Parent administering of testing to child,  Evaluator administering of testing to child, Parent filling out assessment forms (while child is evaluated) 

  • Acceptance and participation into this study does not IMPLY treatment at the SMart Center.

  • Following the testing the parent will receive a brief report providing information about their child's expressive and receptive language skills based upon performance on narrative abilities and
    vocabulary.

  • Signing of Parent consent form

    TO sign up, Please contact us via email at: smartcenter@selectivemutism.org  Attn: S/L Study.
    Our staff will contact you back, via email, with dates/times for study participation.

    For study QUESTIONS, read over our     Frequently Asked Questions 
    If you have other questions not addressed in our FAQ section, contact Dr. Klein directly at: klein@lasalle.edu

 

 

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