OCD and Misdiagnosis

Image courtesy of Carlos Porto at FreeDigitalPhotos.net
Image courtesy of Carlos Porto at FreeDigitalPhotos.net

The history teacher is sitting across the table, kitty-corner from me.  He has a look on his face I’ve seen before.  He has something trying to push its way out of his mouth, but he’s biting his tongue, trying to keep it from reaching my ears.  I take the reins.

“Go ahead,” I tell him.  “There’s something you want to say to me.  I can take it.”

We are sitting in Blake’s annual IEP meeting (that’s an Individual Education Plan for those who don’t know the special education lingo).  It’s a matter of formality this year; just a re-setting of goals.  Blake has had special education services since he was in first grade, but it’s not because of his OCD.  It’s actually because of some other issues he has.  Really the only remaining issues have to do with sensory issues that make it a little tough for him to write and to organize.  Of course, the OCD usually comes up because it affects school.

Right now, though, we’re waiting for Blake to arrive at the meeting.  While the reviews of Blake as a student and citizen are stellar, he is struggling socially.  I know this.  I’m the one who brought it up.  The history teacher seems to really adore Blake, but something about his social interactions with the other students is bothering him.  He’s trying to tell me what’s been itching at him about my son, and he is afraid to say it.  Even though I’ve invited him to tell me what it is, I can still see he’s struggling.  I’m pretty sure I know what he’s holding back.

“There have been teachers who have thought Blake was autistic,” I say.

“That’s it!” he jumps in.  “He feels like he might be autistic.  Like he doesn’t understand some of the social conventions.  He does great with me, but with the other kids…”

“I know it’s in the records, but I’m guessing that the information hasn’t gotten to this year’s teachers yet.  Blake has OCD.  He’s not autistic.”

We are 2 months into this school year and Blake has a whole new group of teachers.  His last group followed him for a while and knew his history.  Somehow, the information hasn’t been passed on.

“OCD?  I didn’t know he had OCD.”

The principal nods.  He didn’t know either.  Blake has just made the move from middle school to high school.  Same campus, but everyone except the resource specialist is new to him.  They haven’t read his file.   They have lots of students to think about.  This is my chance to educate.

“Do you know much about OCD?”  I try to ask this gently because I don’t want to offend the teacher and principal.  I want to bring them to Blake’s team.  They let me know that they know very little.

Children and teens with OCD are often misdiagnosed.  Anxiety and OCD, in particular, can mimic many things.  A child who is distracted by intrusive thoughts and mental rituals can look like they have an Attention Deficit Hyperactivity Disorder.  A teen who does not follow directions because they interfere with a ritual looks like they are Oppositional Defiant.  A young man who is distracted because he is wondering if he said his prayers right  and misses social opportunities because he’s off performing a ritual has a tough time socializing with other kids.

“When a child has OCD, they are bothered by thoughts in their own heads.  They miss out on social cues and opportunities to interact.  Blake is struggling a lot with intrusive thoughts about whether he is a good person.  He’s constantly evaluating himself and having to perform rituals to ensure he is not morally wrong.  I know you all don’t remember when he first started at this school, but he was afraid that all the other kids were contaminated and that being near them would contaminate him.  He couldn’t get near anybody and he could barely complete any work.”

The teacher and principal look shocked.  They had no idea.

“Blake’s made a lot of progress.  From what you’re saying, he is on top of all his work now – and doing it really well.  But it also sounds like he still needs help to join the group.  I know he missed out on some of that social learning.”

The teacher promises to help Blake with the social issues.  I silently wonder if it’s time for an in-service training on OCD and anxiety like the teachers received when Blake first began at this school several years ago.  It has been nearly eight years since a teacher last told me they thought Blake was autistic.  But I know that this happens with children with OCD every day in schools all over the United States and the world.  OCD hides – and many of its sufferers, whether child or adult, are reluctant to share what they believe are their strange ways of thinking and behaving.  So they are misunderstood, mislabeled and they go without treatment.

I am sad that my boy is having a hard time socially and I hope that we can find a way to help him with this.  At the same time, I am grateful that we understand that he has OCD.  It is infinitely better than working with a label that just doesn’t fit.

Brothers Clash

Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

As the title of this blog (OCD In The Family) would suggest, OCD affects the whole family.  Siblings can be hard hit in the whole mix of things.  In our family, Blake’s big brother, who is two-and-a-half years older has often felt trapped in the middle of a storm with little he could do about it.  From the time he was nine-years-old, he was pulled out of school to attend therapy appointments, has had to watch his brother’s major meltdowns and has felt the loss of mom and dad when we have been pulled to deal with one of Blake’s OCD moments.

While our lives have been much calmer in recent years, there are still conflicts that occur and many situations are touched by OCD’s handiwork.  The calm times have allowed for big brother to vent his own frustrations and share his perspective on the situation.  The truth is he still harbors a lot of resentments towards Blake and toward his dad and I for some of the ways we have handled things.  While he has little trouble telling his dad and I how we fall short (he is, after all, 16), it has been a little tougher for him to clear the air with Blake without me intervening in the process.  This past week, though, he found a way to assert himself with his brother.

Big Brother Takes a Stand

Dinner time – ah, yes, the perfect time to start an “OCD is messing up our lives” discussion.  Why does  it always seem to happen around dinner time?  At any rate, as I was preparing for the family meal, Blake and big brother were setting the table.  During the process, Blake switched out his placemat and replaced it with a different one.  He continued to set the table, but big brother saw this as the perfect time to confront Blake about his OCD.

“What was that about?”

“What?” Blake asked innocently.

“Come on.  I saw that.  You switched out your placemat.  Put the other one back.”

“No.  I can’t.”  Apparently some food had been eaten using the placemats that are on Blake’s “No Eat” list.

“This isn’t right.  This is OCD.  It’s not going to affect my dinner.  Put it back.”


I tried to interject at this point.

“You know what?  If Blake decides that he is going to do something, then that is his business.  If he’s not asking for help to defeat OCD, then it’s his thing…”

“Mom – for once take a stand!” big brother implored.  “It’s not okay for him to do this.”

Mom Backs Off

I closed my mouth and took a step back.  I’ve been more reflective lately and have been trying to allow myself a little measure of peace.  For sure, I’ve intervened in Blake’s interactions with his big brother many, many times.  I’ve tried to protect him and tried to prevent blow ups.  It occurred to me that it was time to step back and let them work this out themselves – as long as no one was taking too bad a beating.

So they continued with their argument – Blake standing up for himself and insisting that this was not OCD, and big brother insisting that it was and that Blake must not give in to it.  For certain, it got heated at moments, but no one got way out of line.  I’m not sure the situation was ever resolved.  What was apparent to me is that my boys need to have the space to sort this out, even if it means it gets heated sometimes.  Big brother needs to have a voice in light of his brother’s OCD and Blake needs to hear how his brother feels affected – and he also needs to learn how to stand up for himself in situations like this.  Stepping out of it is a big step for me.  We will see how I do.

*Note:  I am doing much better than I was the last time I posted.  The depression has nearly completely lifted.  It did give me the ability to step back and look at things from a distance.  Blake, on his part, has started relaxing some of his eating rules and is eating a greater variety of foods.  I hope it is a trend that continues.