My daughter was diagnosed with autism in May 2008. For several months after getting the diagnosis I had a very hard time believing it. Many people told me it can be very difficult to accept your child is autistic but the quicker you accept it, the better off your daughter will be. I decided to go ahead and start the therapy path suggested to me but I continued to feel my daughter’s diagnosis may be wrong.
When given the diagnosis, I was told there was nothing I can do for her but to get her help through the state with therapy sessions. It took a very long time to get the therapy set up for my daughter. In the meantime, I started on my own crusade. While researching and talking to people, I learned a lot from so many other parents and teachers who deal with autism every day.
The first mom I ran into told me to try the Gluten Free / Casein Free diet. This diet helped alleviate her obsessive-compulsive behaviors, cut out her 2 hour tantrums, she began interacting with her siblings more, she no longer pulled her hair out and started sleeping through the night.
Another mom told me to take red dye out of her diet. I did this and it helped lessen the tantrums even more: It seemed to help calm her down. I met a dad who told me about a supplement called “TMG” (Trimethylglycine with Folic Acid & B12). This supplement helped level her tantrums as well. When I tested her and took her off this supplement she was less social and more emotional. When I say emotional, she was just not very happy or as happy while on the supplement.
All of the above treatments I mentioned helped tremendously but then I met some people that changed her and my life forever; her special education preschool teachers. They questioned if she was “really” autistic from when they first met her and seemed to think she was a Selective Mute (SM).
SM is considered a rare psychological disorder. It causes high social anxiety in the people who have it. Children and adults who have typical speech in comfortable settings may not say one word or act extremely “shy” in social settings. For instance, some kids will talk freely at home but once they arrive to school they clam up and don’t say one word. Or, like in my daughter’s case, they only whisper.
Some of these kids get diagnosed with autism because they appear to have autistic characteristics while being evaluated. My daughter would hardly say one word to the psychologist. She would not want to participate in answering their questions because her social anxiety would basically paralyze her. She would not exchange any eye contact. She would pinch her fingers in situations of high anxiety (which we used to think was stimming). When a psychologist would ask question after question, she did not say one word. If we were at home, she would have answered them all without hesitation.
Kids that are autistic can also have high social anxiety. This is where it may become confusing if the person diagnosing your child is not familiar with SM or if they are not thinking outside of the “autism box.” You can most likely tell an autistic child from a SM child because most autistic children experience stimming, poor eye contact, sensory issues and repetitive behaviors in any situation. However, as I mentioned above regarding my daughter, she experienced many of these characteristics ONLY in social settings. If this behavior sounds familiar to you then you may want to have your child reevaluated and bring up your concerns of SM. Remember to video tape you child at home so the psychologist can see how they act in a comfortable setting.
The more research I do, the more I believe my daughter had the “perfect storm” and that is what led her to the autism diagnosis. I haven’t mentioned a major point in my daughter’s story yet. She has a food allergy (Celiac disease) that gave her certain characteristics of autism. The combination of those characteristics and having high social anxiety looks just like autism.
I never bought into her autism diagnosis because she never had the hand flapping or body rocking, none of the physical sensory treatments were working for her (actually had opposite effects), she was always very affectionate (loved to get hugs and being held) and she was very compliant. So many things just didn’t fit for me. I always questioned it. I never knew if I was questioning it because I didn’t want to believe it or if it was just a wrong diagnosis.
When the teachers first suggested SM I started my research and the more I learned, the more it seemed to fit my daughter like a glove. I finally had a diagnosis that made sense. I could finally get my daughter the correct treatment she needed.
I set off to research treatment plans for SM and found it very difficult to find any information. Over a week’s time, I sadly learned there is just not a lot of information available for SM. I posted many posts on this disorder on my blog and received a tremendous amount of feedback from other parents looking for more information as well.
I was very excited when I met a woman online who is a psychologist with a SM daughter. Her name is Shannon Morgan-Gillard, Psy.D. She runs a clinic for SM children; The Brave Center.I asked her what she thought of Cognitive Behavioral Therapy (CBT); since this is the treatment I read was the most widely accepted in treating SM. Below are some thoughts and suggestions she gave me:
1. CBT is the right treatment for SM. Sometimes a psychiatrist is needed to find out if medication is recommended. However, Dr. Morgan-Gillard suggests you try CBT for one year before considering medication.
2. Focus on the anxiety. You need to treat the anxiety that lies underneath the verbal issues. Do not try to make your child talk (this may only lead to further anxiety). This is why ABA therapy is one of the worst types of therapies for an SM child. ABA tries to bring the language out. Once ABA therapy sessions began for my daughter, they caused a tremendous amount of stress for her. The therapists did not know it then, but they were making her anxiety worse. This is why it is very important to discover if you child has SM and autism or just SM. I believe in ABA therapy for autistic children but please make sure your child has the correct diagnosis before implementing any type of therapy.
3. Build confidence. Dr. Morgan-Gillard said, For young children, the behavioral part of CBT treatment is what is effective at first, because they do not have the capacity to identify their thoughts or reason with themselves to change their thoughts (that’s the cognitive part of the CBT) until about age 7. CBT therapy can be implemented by helping your child complete tasks that cause a lot of anxiety for them. Approach these tasks by pulling them apart into workable phases. For instance, take your child to the grocery store and ask them to place an item on the conveyor belt. Overtime, once they are comfortable with that ask them to hand the money to the clerk. Once they are okay with that, ask them if they want to say “Hello” to the clerk. And so on. It may take a long time before your child will want to talk to a stranger so you never want to push that. The goal to this form of therapy is to make the child gain confidence and a level of comfort in normally high anxiety situations.
Children and adults that have SM are afraid of being judged in a negative manner when they are put into a high anxiety situation. For instance, kids may not talk because they do not want the attention to focus on them. Maybe they are afraid they will say something incorrectly or give the wrong answer. By encouraging your child to talk to people at a young age and ensuring they receive a positive response, you are helping to build their confidence and self-assurance. This is the basis of CBT.
4. Play dates are very important for small children with SM. Dr. Morgan-Gillard suggest you have as many play dates as humanly possible. With SM, the more frequent a repetition of something, the better. If you could have a play date every day, it would speed progress. When the child is in his/her comfortable setting, they can more quickly move to feeling socially comfortable with a peer, and toward talking with that peer. It’s best to repeat play dates with the same peer for a while; then add another peer or switch play dates to another peer and repeat with that one, then add two together after a while, said Dr. Morgan-Gillard.
5. Act silly. If you can act silly around your child and be physically active with them, it may help reduce their anxiety level. I actually tried this at a birthday party. All of the kids were playing with the clown and running around acting like farm animals. My daughter ran over to stand by my side and held onto my leg as tight as possible. I took her hand and walked into the middle of the crowd of kids. I started acting like a farm animal too. She looked up at me with complete surprise. The other parents gave me the same look but it didn’t faze me. I wanted my daughter to know it is okay to act silly. She jumped right in with me. We played farm animals for quite some time.
6. Don’t say they are shy. A tip I learned from my sister was to never call my daughter, “Shy.” Previously, this response was second nature for me. I always felt uncomfortable when a stranger would approach us and tell me how cute my child was and then try to ask my daughter a question and she would not respond. When my daughter would hide behind my leg and not say one word I used to come back and say, “Oh. She is shy.” My sister brought up a good point and told me not to label her. If my daughter hears me say this over and over, then maybe she will believe she is shy. Now, I just give the stranger and smile and say, “Have a nice day.”
These are the tips and therapy suggestions I have found helpful to date. I am always researching and looking for ways to help my daughter. My next target of research is art and music therapy. Although I am still in my learning phase of SM, I felt compelled to share what I have learned because any parent of a child who has been recently diagnosed with SM knows there is not a lot of information available.
I am happy to announce my daughter was re-diagnosed in May of 2009. After one year of questioning her autism diagnosis we finally received a diagnosis that made sense: She is no longer considered autistic and has SM. I stopped the ABA therapy instantly. The state dropped her because she is no longer considered disabled which was bitter sweet. I am now on my own trying to help my daughter with the CBT approach. I feel incredibly hopeful and have seen tremendous improvements in my daughter; so much so that I now consider her to be a “typical” child.
I hope my daughter’s story will help educate the public on Selective Mutism. I can’t help but wonder how many kids are currently diagnosed with autism that actually have the same “perfect storm” as my daughter had. I believe trying the Gluten Free / Casein Free diet is always a smart thing to do once your child receives any behavioral disorder diagnosis. I know it does not help all children but if it does help your child, it may give them their “typical” life back.