Thank you so much for sharing the story of your daughter. I would guess that selective mutism, like TS, is among the class of rare (aka, “orphan”) disorders in this country. Remarkably, those diseases each affect 200,000 or fewer people, but collectively affect some 25 million, according to stats from the National Organization for Rare Diseases (NORD). That is another group in which I’ve started to invest some energy, and hope to soon publish an article on their work. Thanks again for sharing.

There are still so many conditions not readily understood by the medical community. To finally get a definitive diagnosis and treatment that works is like discovering paradise. What a relief to just get a name for what ails you and stop the suspicions of malingering or hypochondria.

Very, very true, domajot. Sometimes anecdotal evidence is helpful but doctors don’t put much stock in it (and rightfully so- their professional mandate is to base their treatments on well supported evidence). When the traditional avenues fail you though, you have to look for hope wherever you can find it. If you analyze information carefully and try things that “can do no harm”, sometimes you can find answers that traditional medicine hasn’t yet found or acknowledged. The internet is certainly a blessing in this kind of search, and without it my family’s story would have had a much less happy ending.

Without recounting the medical histories of family and friends, I would just like to say a word for those whose conditions are still not easily diagnosable. It can be a life of going from doctor to doctor, collecting a pocketful of diagnoses which the next doctor discounts in favor of his own pet disease. There are still so many conditions not readily understood by the medical community. To finally get a definitive diagnosis and treatment that works is like discovering paradise. What a relief to just get a name for what ails you and stop the suspicions of malingering or hypochondria.

She suffered from an anxiety disorder which is also quite debilitating and horribly misunderstood. It’s called selective mutism, and it’s a severe form of anxiety that affects individuals, almost always beginning in childhood, causing them to be unable to speak in certain social situations even though they speak normally when in comfortable settings and they typically have normal cognitive abilities.

It’s hard to even describe the hell we went through; trying to figure out what was “wrong” because no one (even most health professionals) understands this disorder. Unfortunately popular literature and movies have dramatized cases of traumatic mutism (cases where individuals become mute after a traumatic event), so that out of ignorance some people assume that kids with selective mutism have been abused. Another common false assumption is that kids with this disorder are only seeking attention (which is actually the last thing they want as they are almost always shy and inhibited). So, many kids are punished by well-meaning parents and teachers for “refusing to speak”. This is not only cruel, but highly counterproductive because punishment only worsens the anxiety that is the root cause of the disorder. Still other kids are misdiagnosed with autism because their behavior in social settings sometimes resembles the behavior of autistic kids.

It’s incredibly heart wrenching to see your child struggling like that (my daughter was completely mute except with close family members, and beginning school was a nightmare; she froze up and couldn’t even participate nonverbally in the activities.) The medical literature at the time held out little hope for improvement, so we thought we would be faced with a child who would never be able to develop to her potential or lead a normal life.

Fortunately I was finally able to find enough information to help my daughter, and I became motivated to help other parents. That led to my involvement in a nonprofit advocacy group, the Selective Mutism Group/Childhood Anxiety Network. Just as Pete points out the important work that TSA has done to raise awareness and funds for research for Tourette’s, my group is working to do the same for selective mutism.

On a note of pure, unapologetic maternal pride, I’ll close with this: my daughter came home from school yesterday (7th grade) and informed me that her language arts teacher chose her to compete in the school’s upcoming oratorical contest (one of two students chosen from her class based on their speeches to the class). She’s also planning to audition for a solo part in her school chorus. Did I mention how proud I am of her in overcoming this?