OCD and selective mutism (long)

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Hello!

I post to a selective mutism group for my son (almost 15, attends a small

learning center with an IEP where I work with his tutor on site) but used to

post here alot too (hello to all the " oldsters " here!) since I have two older

daughters with OCD, plus social anxiety is difficult for my kids as well.

The group might remember my older girls, who were homeschooled and one of whom

(now 20) dealt with a sudden-onset life threatening eating disorder (PANDAS?) at

age 12, and an aspergers type profile, and with hindsight-selective mutism as a

young child. She lives at home and attends community college with plans to

transfer. She is very smart and dedicated to her classes, but recently after

illness she had a bad flare of ocd and depression so increased medication

(cymbalta) dosage and trying an antibiotic. She is not one to give up. Another

(23 now) went to Menninger at age 19 with variations of OCD, BDD, and something

medical in realm of CFS or JRA or fibromyalgia; it helped her alot to be with

peers and to see treatment approaches, but she has not been able to complete

college courses and is at home. She discontinued meds due to discouragment with

side effects and/or no progress.

Among my kids without diagnoses (we have 6 kids)are shadow syndromes of OCD and

social anxiety. My 18 yr old also attends community college (the 20 yr old and

18 yr old help each other by being together) with plans to transfer; she has no

OCD but her shyness is pretty severe. My other no-diagnosis kid (now 13)

experienced school rerfusal and panic entering middle school, but we got him

though it OK with help of his staff at our small parish school. My youngest now

is 9 and she is somewhat shy in school (not at home) with no signs of OCD. My

working in her classroom 1 day a week has helped her with raising her hand more

and asking questions of her teacher.

Anyway I posted to the SM list today and thought I would copy it here, wonder if

any others deal with SM in their OCD kids?

nancy grace

(cross posted):

I thought the below article might interest some parents. My son is almost 15 and

I think of OCD as his primary diagnosis. It was present(along with verbal and

motor tics) before he stopped speaking in school in 5th grade; plus two other of

my kids have OCD, as well as my husband somewhat. I think I contributed the

social anxiety (genetically) and my husband the OCD. My son's OCD is of

contamination kind and is pretty severe, he can barely touch anything(we tried

therapy with 2 different OCD specialists but neither could get beyond the SM).

At one time his brother was " contaminated " as well, now it is his little sister.

OCD also limits his ability to write due perfectionism (so he cannot use writing

as an alternative to speaking). Additionally his ability to express himself is

limited in writing similarly to how SM limits his speaking, so keyboarding to

accommodate his inability to handwrite does not go much farther than a very

brief objective sentence if an assignment calls for writing. He cannot do high

school level work due to this. He cannot do any testing b/c it is too

" evaluative " for him.

I have always wondered if SM in my son was a manifestation of a sort of OCD

perfectionism, or needing to get speaking " just right " or extreme doubt as in he

can't speak unless he knows he is saying just the perfectly right thing-so the

doubt surrounding that requirement effectively blocks him, in addition to the

more typical social anxiety of SM. He obviously deals with the social anxiety

and self consciousness of SM too, and the sensory defensiveness, and the

heightened sensitivity to others' tones of voice or facial expression, and the

discomfort/fear that he is being negatively evaluated.

Since his SM started in 5th grade (or that is when he became silent-resulting in

poor treatment and leaving school- he had milder manifestations earlier that

could have been viewed as typical shyness) it has been very hard to accommodate

him b/c older kids are more adverse to what may seem juvenile in the efforts to

help, like having mom present, or fading/sliding-in (although fading has been

the only thing allowing my son to work with someone other than me, but it does

not result in much speaking at all-just enough to get by).

I feel like the contamination OCD with pervasive avoidance (as opposed to

rituals, although he requests to have disinfectant wipes or even latex

gloves-which I don't accommodate, in which case he covers his hands with his

sleeves) along with SM, and the sensory defensive avoidance, make my son's case

very difficult. He tends to have " overvalued " ideas about contamination, meaning

he is not willing to do exposures for therapy. He much prefers being alone and

being at home. Due to SM he cannot really communicate with a therapist, although

an SM speciaaist helped us get his IEP placement(the district wanted to send him

40 miles away to a more delinquency type setting). On the other hand he does not

" impose " his OCD on the family, as we have experienced with one of my other

kids-since he does not really do rituals-mostly avoidances.

Anyway, I have not seen many (or any at all?) articles that link OCD and SM as

sort of integral counterparts to each other-so found this interesting. If anyone

has found other articles to help with understanding my son's difficulties, it

would help me because I keep a file for anyone who works with him.

(I hope it is OK to link to other articles here)

http://www.netplaces.com/ocd/ocd-in-kids-and-seniors/childhood-ocd-versus-adult-\

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ocd.htm

This article about older kids also helpful:

http://www.selectivemutism.org/resources/library/SM%20General%20Information/Olde\

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r%20Children%20and%20Teens.pdf

nancy grace