Post to Parents Group - April 4
Has anyone benefited from Exposure Therapy? I am concerned at the lack of progress & the direction therapy has gone with my son. The therapist comes to my sister's house and sits in a room with my son. The 1st part of the session is to have my son speak to her about his day. This is not happening because my son will sit with his hands over his ears and tune her out. The 2nd half is where the therapist will play a recording of a trigger. If my son sits in the room for 10 minutes, he gets 1 hour of X-Box time.
While my son has not yet had a rage, I am concerned we are going in a bad direction. Once again I voiced my concern with our Psychologist who is driving the process.
This weekend I will be going out to my sister's house and visit with her for 30 minutes. Our psychologist was going to have me follow my son and spend 10 minutes in a room with him. I am following the advice of a Misophone-friend and told the Dr. that I will not try to make contact and let my son stay in his room. My son will be made aware of my pending visit and be allowed to avoid me. Our psychologist was surprised by my cautious approach and is fine with it.
The area we are in disagreement about is Exposure Therapy. I am afraid what they are doing may reinforce my son's triggers, not diminish them.
Kristie: Exposure therapy made my son worse. He didn't develop more triggers, but it strengthened his determination to avoid his triggers and his rage and overall irritability/stress increased. It was not done with cbt, it was just him being forced to sit through someone eating a meal. He got to pick what meal and who. He always picked breakfast and his brother, who would eat his cereal very quietly. No clinking chomping or slurping. It lasted for a couple of months. When we stopped it, his stress level immediately dropped and his anger improved, as did his relationship with all of us.
Bev: I've read that exposure therapy can make triggers worse. This makes sense to me because over the last 20 years my triggers have caused increasingly negative responses. Most people also say things get worse over time and this might be due to the exposure itself.
Sharon: I remember reading somewhere that exposure to the trigger probably strengthens the negative reaction/association but I don't know this with any certainty. I have a feeling a lot of psychotherapists would recommend this method based on current thinking but whether it works with this condition is debatable.
Linda: As a parent of a 37 year old son,and one who has been dealing with this for many years.......to me this therapy sounds like a punishment for something he did not ask for.It makes no sense to me.
Chris: My son had exposure therapy done as part of CBT for anxiety, and it worked well. However, what you describe sounds like way too much too fast. I would definitely get a second opinion. I think as a parent you should certainly trust your intuition on this. I am intrigued by the exposure-type therapy used by Tom Dozier's Trigger Tamer app. Have any of your kids tried that?
Me: No, I have not tried Tom's Trigger Tamer. This would not work in our case. I have a son who is in denial and pretty sure this would not work for us for several reasons. I am reading a book by a Neuropsychologist that I find interesting. I think it is important to have science back up treatment and I like not only the concepts in this book but the thorough explanations on how the brain works. http://www.rickhanson.net/books/hardwiring-happiness
shows you how to tap the hidden power of everyday experiences to change your brain and your life for the better.
Chris, I am also concerned that Misophonia can not be treated like anxiety. I have heard that exposure therapy is great for anxiety and phobias but for some reason can be detrimental for Miso.
Linda: My son explains his feeling of what a trigger feels like to HIM.......it is PAINFUL ,feels like an ice pic being stuck in his ear, I will never believe this is a "physiological" issue.He believes there are wires that are crossed and its like reacting to a cut.......PAIN signals are sent to the wrong place.How can making a child feel pain HELP!!!!Just saying?
Laura: Exposure therapy did not work for my son and makes it much worse.
Ruth: Yes I keep hearing exposure therapy makes triggers worse. Re Tom's treatment, I believe it's different (very very brief) because Tom also says that exposure makes triggers worse.
Kit: True, Ruth. Tom is all about "Happy Miso Time"...does not want patients to use his application if it is causing distress. And if it does, you gots to shut 'er down!
Tasha: Bonnie, it just sounds torturous to me! Sorry to put it so bluntly, but I think you need to act on your own motherly intuition, and step in to make this stop. It would be bad enough if you had a kid who was "all in" and willing to try to help himself, but he isn't even on board yet. I feel like forcing not only the counseling sessions, but the exposure therapy in particular, will just end up making matters worse... much worse. You said that the psychologist is "driving the process." But it's my belief that a really good psychologist let's the patient do the driving. This little fellow is gonna end up with even MORE rage and resentment if forced to endure ongoing painful exposure. I'm so glad to see that you are beginning to rethink this.
Me: The reason I have allowed this so far is that 1. My son is allowed to leave the room at any time 2. We need to try some type of therapy to get my son ready to come back home. (he "hates" us and doesn't want to have anything to do with us) I'm in a position of "Damned if I do and Damned if I don't". My concern and reason for posing the question is that I am fearful of this process being stepped up further to where my son can not escape (like being followed to his room with the trigger sound.) The rational for this is that he has to learn to tolerate these kinds of noises to be able to function in the "real world". I was asked in our last session if I wanted to "fire" the therapy team (our CBT Psychologist and his PhD candidate intern). I indicated that I want to take it week by week and will stop at the 1st sign of a rage. We've been lucky so far that my son has not had a full-on rage since going to my sister's home.
It was explained early on that part of this therapy is due to my son denying that he has a problem with certain noises. His therapist started the challenges as "O.K., you say you don't have a problem so you should be able to sit in the room with the ceiling fan on. " I don't have a PhD in psychology and I base my concerns on speaking with parents and Misophonia sufferers. This goes against the training of our CBT PhD. I am trying to be cautious but allowing trained professionals to try their hand at this. We've already unknowingly made mistakes that got us to this point. We have a matter of weeks until school is over and our son must come home, ready or not.
Tasha: I guess I just don't see the point, even in "making him admit he has a problem with certain noises." Why? I mean he is 13 years old. Do you know how many grown adults are in denial about all kinds of ailments, issues, and behaviors? It's like forcing a 13 year old overweight child to "just admit you have an issue with food..." before they are mature enough and ready all on their own to own it and change it. They have to acknowledge it, believe it, embrace it, and THEN want to help themselves because we can't, even with a doctor's help, do it for them. I promise I'm not scolding or criticizing you. Sorry if it sounds that way. I am just trying to support what I think you already suspect, and to empower you to follow your heart. Strength and love to you, Bonnie
Linda: Agree to some point......food is a choice, Miso is not.
Me: Thanks, Tasha. There are so many things that I know now, that we didn't know at the beginning of our journey. We are in this mess from trying to force doctor visits on our son. We had no idea of what we were dealing with and were sick with worry at some of his scary reactions to certain noises. ( for example: on rainy days he was ready to jump out of the car and walk home from the Y to avoid the car's windshield wipers) I don't see how we could have done anything differently given our circumstances.
Tasha: Hind sight is 20/20, for sure. BTW, we just had to spend $100 to replace a worn-out part on our son's wiper blade mechanism, because it had gotten so sluggish it would just "clunck" down each time, and he couldn't stand it... turned around one rainy day and drove back home instead of the 40 minute drive to college. Thank goodness that fixed the problem!
Ann: Bonnie, that is child abuse.
Laura: Ann, what are you referring to??????
Ann: referring to main post, everything before "while my son has not yet had a rage..."
Laura: Ann, It sounds like you are referring to exposure therapy. I agree it is awful for someone with Miso to be forced to hear triggers.
Marsha: Not good sorry
Gail: Based on everything I have read and experienced with my own child, exposure therapy does not work. It increases stress. I think at the core, it's all about offering unconditional emotional support, validating their feelings and giving then the lead on problem solving. I'm sure I'm sounding like I am over-simplifying and I don't mean to as this is such a complicated and confounding disorder. But exposure therapy is almost like dismissing their feelings. My daughter fares so much better when we make sure she knows we understand and support her. Heart goes on to every single person who suffers from this!
Melanie: I think your instincts are right here, Bonnie. It's not helping and at this point there is nothing to be gained by trying to force a "confession" of sorts out of him. Whether he is willing to talk about it or not, he obviously has these strong reactions to sounds and I think you know it's misophonia. I know how much you want your son home and you want to repair your relationship with him. You may have to set that aside for a bit and try to figure out what it is going to take on a basic level to make his life tolerable so he can get some enjoyment out of it as he moves towards adulthood. I think if he sees you making his comfort your number 1 priority, that will go a long way toward changing his relationship with you. Sending you high hopes.