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Beng:  My daughter does not talk in school (since preschool). My daughter exited her IEP (Developmental Delay) as soon as she entered kindergarten. According to the team, she’s performing on grade level although she’s not talking or just whispers. Few months in kindergarten, I was referred by the guidance counselor to contact UNLV school re: selective mutism. To make the story short, she’s diagnosed with selective mutism and social phobia. She has presently has 504 plans with a “”FEW”” accommodations only and I am not sure if accommodations are being done as I am not in school all day (no way for me to know). I read a lot about IEP for children with selective mutism. I wonder if it’s a good idea to contact the school psychologist, speech pathologist again to re-evaluate her and give her IEP. The reason she EXITED according to them is she is perfoming on grade level but basically my daughter’s teacher cannot assess her (all her skills are DOES NOT MEET.). Question is, can they give my child IEP again? I am worried that they will retain my child since they cannot assess her.

  1. Totally agree with all comments made by the school-based SLP. Selective mutism is NOT SLI. I’m not sure why people don’t understand this. Any SLPs who disagree are welcome to support this area in private practice. School-Based therapists ONLY should be treating SLI disorders NOT selective mutism.

    If your child can play soccer in the backyard, can kick, score goals etc. But can’t try out for the soccer team because they fear the other kids or pressure of it on a real field. You don’t get them soccer lessons. They don’t need soccer lessons, they already can kick and play. You figure out what is going on with them socially and mentally and you fix and address that problem. Does it make any sense to hire a soccer coach when the child already can play amazing and has all the skills? No, it doesn’t they can’t teach the child anything they don’t already know how to do.

    I don’t understand why people are so fixated on this being a Speech pathologist’s job. That 2004 article is very out of date and does not take into account the skyrocketing rates of social anxiety in children these days. More mental health awareness is out there and we need to stop trying to fix it with a bandaide.

    If you get therapy for the child they can make progress in less than a year with a truly gifted and appropriate therapist. If you think speech is going to fix it, you’re in for a rude surprise when they’re on their caseload 8 years later with zero progress. If you want an IEP aim for OHI, you’re not going to help your child with an SLI label. It won’t fix the issue and having an IEP that is not correct in identifying the root cause will not help your child succeed academically. Therapy is not bad, I’m not sure why people are so quick to try to pretend it’s a speech issue when it is not.

    • Hi SMisnotSLI,

      Yes, Selective Mutism is an anxiety disorder. Some experts think it’s an extreme form of social phobia. However, some children with SM also have articulation disorders that compound the anxiety of interacting with others. In one study, roughly half of children with SM also had a phonological disorder so it isn’t surprising that SLPs are called upon to evaluate, train teachers, and function as a consultant to the IEP team.

      Kids and teens with SM often seem extremely shy or withdrawn, avoid eye contact, remain motionless and expressionless. Before school or social events, their anxiety gets worse. These kids get headaches, stomachaches, throw up, and/or have diarrhea. When they are at home, their symptoms are often minimal or non-existent. The need to go to school where they are around hundreds of other kids makes their condition worse. It can be painful to watch.

      I recommend a couple of articles about selective mutism from the American Speech and Language Hearing Association. These articles describe SM, screening, a comprehensive assessment, speech and language assessment, educational eligibility, treatment options, and techniques.

      (short) https://www.asha.org/public/speech/disorders/selective-mutism/

      (long) https://www.asha.org/practice-portal/clinical-topics/selective-mutism/#collapse_6

      The Selective Mutism Association is another source of info:

  2. I feel for everyone here. I have had to advocate for every one of my 5 children in 1 way or another ADD ADHD ODD and now my only baby girl. 11 now and i can hardly get her out of the resource room and back to her classroom. We were doing great until last year and we had a teacher who was a drill seargent. Omg we lost her. What i can say is that you as a parent have all the rights. the schools can try to tell you that your child does not fit the bill for an IEP or 504 and they are on task with all testing and grade level, blah blah blah. These children are not like others. They need time to get in their comfort zone . I have found that i just politly tell the School what she will have and they accomidate. They kind of have to now. We have been blessed with an amazing resource teacher.

  3. I’m new to SM. However, I do think your daughter would benefit from speech therapy, as articulation is probably difficult for her. Also, I think she would benefit from having measurable social goals and benefit from being taught skills not in a group setting, at least not until her level of anxiety decreased. She would need an IEP in order to get speech and language, so I’m pretty sure she would benefit more from having an IEP than a 504. Depending on her age, you might consider an anti anxiety medication since SM is due to having high anxiety levels. Unfortunately, when SM children become teenagers, teachers perceive them not speaking as defiant behavior. By her having an IEP she will be better protected in regards to manifestation. Hope this helps

      • Children need to learn to communicate. Communication is a basic skill. If she doesn’t receive services from a speech language pathologist, who is going to teach her to communicate? Curious about how we will resolve her problem.

        • I agree children need to learn to communicate and many behavioral issues are due to weaknesses in communication. However, in GA, the regs specifically state that a language impairment does not include: D) Children who have anxiety disorders (e.g. selective mutism). I guess we need to focus on the anxiety piece of SM to help her child.

          • There seems to be a lot of confusion about what a speech language pathologist is responsible for, especially in the school setting. Speech Language Pathologists are not trained to work with social anxiety, selective mutism is rarely an articulation or lang disorder despite what you may have read online. A licensed SLP will make no progress with your child, we are trained to support children who physically cannot talk communicate.

          • This is false! A licensed SLP is usually the point of origin in helping a student. Please check out the following websites for more information on how to help students with SM:

            1. Asha.org/public/speech/disorders/selective-mutism/
            2. https://selectivemutismcenter.org/
            3. https://selectivemutismresearchinstitute.org/
            4. https://www.asha.org/practice-portal/clinical-topics/selective-mutism/

            From ASHA: Collaboration between the speech-language pathologist (SLP) and behavioral health professionals (such as a school or clinical psychologist, psychiatrist, or school social worker), as well as the classroom teacher and the child’s family, is particularly important for appropriate assessment and treatment planning as well as implementation because selective mutism is categorized as an anxiety-based disorder. SLPs are in an excellent position to coordinate intervention for children who have selective mutism because of their knowledge and skills in effective communication treatments (Schum, 2002).

            Roles and ResponsibilitiesAppropriate roles for SLPs include but are not limited to:

            • educating other professionals on the needs of persons with selective mutism and the role of the SLP in diagnosing and managing selective mutism;
            • screening individuals who present with language and communication difficulties to determine the need for further assessment and/or referral for other services;
            • conducting a comprehensive, culturally and linguistically appropriate assessment of speech, language, and communication;
            • aiding in diagnosing the presence or absence of selective mutism with an interdisciplinary team;
            • referring to other professionals to rule out other conditions, determine etiology, and facilitate access to comprehensive services;
            • making decisions about the management of selective mutism;
            • developing treatment plans, providing treatment, documenting progress, and determining appropriate dismissal criteria;
            • counseling persons with selective mutism and their immediate and extended families regarding communication-related issues and providing education aimed at preventing further complications relating to selective mutism;
            • consulting and collaborating with other professionals, family members, caregivers, and others to facilitate program development and to provide supervision, evaluation, and/or expert testimony, as appropriate;
            • remaining informed of research in the area of selective mutism and helping advance the knowledge base related to the nature and treatment of selective mutism;
            • advocating for individuals with selective mutism and their families/caregivers at the local, state, and national levels; and
            • serving as an integral member of an interdisciplinary team working with individuals with selective mutism and their families/caregivers.
          • Children with selective mutism on the other hand can talk but are not talking due to psychological/anxiety reasons. Pleasr understand SLPs do NOT treat social anxiety or provide counseling. I cannot fix or treat your child’s anxiety. To be blunt, it is not even remotely within our scope of practice. You need to seek out a specialist outside of the school a psychologist or social worker

          • This is outdated information. SM is not strictly an anxiety disorder. It is a “social communication disorder”. The fact that the child is not speaking says it alone — they are not accessing their full curriculum and therefore should have an IEP to address this deficit. My child has an IEP and receives speech-language services among others to address it. Please reach out if you’d like more information.

          • I completely agree with you! Unfortunately, the regs in my state still use the outdated language.

  4. My daughter is in the high school (11th grade) and have SM. I’ve fought for her to get the IEP and was not successful even with an outside evaluation as well as taking the psychologist with me as she’s performing at grade level. She will not advocate for herself and the school staff (because of lack of knowledge) does not understand that it’s not by choice. She’s just not able to. They do not want to talk to me and want to keep pushing her to advocated for herself. Because of that, she missed out on lots of stuff and also suffered. For example, she never talked to her advisor about the classes for next year and now she’s in the waiting list to take a classs that she wanted to take. The advisor never sought her out knowing that my daughter will not initiate a conversation.

  5. My son has Selective Mutism as well as many other diagnoses. (Other diagnoses came after 1st grade.) He was found to be no longer be eligible for special education during 1st grade so I know what you are going through. In my son’s case we had all sorts of issues since he was transferred to a mainstream class. At the time, he was talking in school but when put into a mainstream class the size of the class was overwhelming for him and he went mute in the school setting. He also began to refuse going to school. That was 6 years ago. I have since learned a lot about Selective Mutism and could give you some strategies to consider as you move forward.

  6. Also an accommodation for you daughter on her 504 plan should be “alternative methods of assessment” allowing you to assess her at home. I would suggest that to your team. If you don’t feel like the school is following the 504 you have the right to call a meeting to discuss it. Work with the teachers and school to figure out a plan that serves your daughter. Not against them. I’ve had doctors pit the school against the parents because the doctor says the school is not doing enough. It’s willful misunderstanding to place such high expectations on public schools that are often strapped for resources and underfunded. A team approach is best, with an SM expert, and parent support. In my work that has been the most successful for the student.

  7. As school psychologist whose worked with SM and found the work very rewarding would not recommend an IEP. A student with an IEP needs different instruction than what they would receive in the classroom. Most students with SM are bright and capable. They most likely will not qualify for an IEP because they will not show a need for one. They need accommodations around their disability (504 plan). A team approach between a SM expert, the school and parents is recommended. An IEP will not solve SM. Mental health services and working with the school will. That is why a team approach is best. Public schools are to provide a free and appropriate education (case law) not free and optimal. But, you can request an evaluation, that is your right. I also do not think retention is okay for SM.

    • I strongly disagree. I was a school social worker for 15 years and fully support social work services for SM. Anxiety is extremely debilitating for these students and although they do need accommodations in the classroom to make progress, they also need tools and strategies that cannot explicitly be taught by a ged ed teacher. I am also an outpatient behavioral therapist and while our work can be rewarding outside of school, we are not at school to ensure strategies are also taught and implemented there. That is where a school social worker comes in as well as a supportive, informed team that understands SM. An IEP does not mean different instruction. It is made up of supports and services to ensure success overall (academically as well as social and emotional).

      • I have to agree with the Psychologist colleague. SPED services are granted on the basis of the existence of disability that has been identified though a comprehensive and robost psycholgical evaluation. and is negatively impacting learning. IEP’s are not a silver bullet. Also, school based Clinical Social Workers can provide therapy to students without an IEP. A 504 can help provide much needed accomodations to address the needs of a SM student. As a Social Worker you can administer an FBA and, pending of results, prepare a BIP. Let’s not forget that SM is not listed in IDEA as a qualifying disorder for SPED, not even under OHI. The DSM – V categorizes SM within the Anxiety Disorders family. Thus a therapetic approach is needed with much more urgency than any educational goals on an IEP.

        • I agree with your first sentence: that to be eligible for special ed services, the child must have a disability that negatively affects learning.

          We parted company when you made this assertion: “Let’s not forget that SM is not listed in IDEA as a qualifying disability for SPED, not even under OHI.”

          Whether selective mutism is or is not listed as a “qualifying disability” in IDEA is irrelevant. The law does not say a child must have one of the 13 disabilities listed. Imagine how long the list of “qualifying disabilities” would be if Congress listed all of them. The law was reauthorized in 2004. How many disabilities have been discovered or described since 2004?

          Look at the legal definition of “child with a disability” – two questions must be answered to determine if the child is eligible:

          Does the child have a disability?

          Does the child “by reason thereof need special education and related services? 20 USC 1401(3) (see pages 49-50 in Wrightslaw: Special Education Law, 2nd Ed.)

          • Because Selective Mutism is not a Health Impairment. You’re right; imagine how long the list would be. It is absolutely relevant that SM is not listed as a qualifying disability.

            Extremely easy for you to make a statement on a forum that it doesn’t matter, but school psychologists are held to the letter of the law to maintain their professional integrity as well as their licensure.

      • How can I get this help for my granddaughter who goes to secondary school next year. . The school she is in says she doesn’t qualify for IEP but my granddaughter has meltdowns through SM

    • This is just not great advice, sorry. An IEP is more than just different instruction, but more, this disability most definitely requires special instruction. At the very least a student would need instruction that does not require spoken participation. Unless the entire class never requires any students to speak, this factor alone would necessitate special instruction for this child. “Bright and Capable” has nothing to do with special instruction. This advice sounds like a typical way to reduce and deny services dogma. Parents should always seek an IEP for such a complex set of needs and NEVER, EVER, listen to any notion that good grades, ability, etc., is a reason to deny an IEP.

        • SLI is absolutely not the correct diagnosis. SLI is for disfluency disorders, physical voice disorders (atenoids, harsh vocal quality all with doctor input), articulation (an inability to correctly pronounce a sound, not an inability to speak), language (receptive, expressive or pragnatic). Expressive is about grammar and sentence formation not again a choice to not speak or inability to do so attributed to anxiety. If you look at ed code it very clearly lists what areas of language qualify (morphology, semantics, syntax) 2 areas must be found below the 7th percentile. My guess would be OHI is the only category that would match the needs of this student.

          • I agree with you that SLI is not the appropriate category but neither is OHI. SM is an anxiety based disorder which falls under EBD.

          • EBD is a difficult category to put a child in. It can effect the rest of their lives in terms of ability to join the military or work in a civil services job. It’s my opinion that OHI is a much better category to give to a student, unless they are showing additional signs of emotional or behavioral difficulties.
            It can be difficult to establish eligibility for SM because school psychologists and slps don’t get much training on SM. It’s not very common (I’ve only had maybe 4 or 5 cases in 25 years of being a school psychologist). I have one case right now that the student study team and I are working through, heading toward an evaluation. We were discussing which categories to consider testing for this morning, and now I’m here, looking for more information on assessment of SM. 😀

          • How does SM affect strength, vitality or alertness? When considering OHI, the medical disorder (which in my state must have a diagnosis from a MD- with the exception of ADHD which can have a diagnosis from a licensed psychologist in private practice) must impact in one of these areas. I just don’t see how SM has an impact there. Based on your comments it sounds like you don’t consider SM to be emotionally based.

          • The EBD label can have lasting impact on the child as an adult. It needs to be be used cautiously. I’d use it for SM if there were any behaviors in addition to SM, but it’s a very heavy label.
            Anxiety can definitely cause difficulties in strength, vitality, or alertness. If you’re busy trying to control your anxiety, you’re not getting as much from classroom instruction.
            We need to provide services while considering the consequences to that child’s future. EBD can limit the future options. It’s awful when a kid wants to join the military, but can’t because of the EBD label. Part of our job is to minimize the negative consequences of our decisions on the child’s life, now and in the future.

  8. Hello,

    My daughter is going to Kindergarten this September and she has select mutism. I would keep the IEP for her. My daughter does NOT even talk to my own father who she sees at least 2 times a week. NOT one word. Just make sure that your kid is not being tested with verbally. If they do have to have an oral test, maybe you can do it yourself on a camera phone and send it to the teacher electronically. I just thought about that the other day.

    I am a teacher and have seen this in the past. Don’t force your daughter to talk. This only makes it worse. Best of luck!

  9. Beng –

    You CAN ask that your daughter be reevaluated for special education eligibility. Unfortunately, it sounds like the school doesn’t really know how to meet your child’s needs.

    Your best bet may be to have your child independently evaluated by someone who is familiar with her condition and how to service kids like her in a school environment, and then providing those results to the school. I suggest that you network with selective mutism organizations in your area to find such an evaluator.

    If you cannot arrange for such an evaluation (it may be costly), you may have a right to an independent evaluation at public expense.

    Here are some organizations that I suggest you connect with:

    #1 your local parent center (http://www.parentcenterhub.org/find-your-center/) for help understanding your special education rights, including independent evaluations

    #2 your local parent to parent program (http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx) for help finding selective mutism support

    #3 your local P2P health info center (http://www.fv-ncfpp.org/f) for help understanding how to access medical and therapeutic options for your daughter

  10. It appears you are in Las Vegas. I suggest you contact the Legal Aid Center of Southern Nevada. The number is 702~386~1070. They are located on E. Charleston.

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