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.

7 thoughts on “OCD and Misdiagnosis

  1. Excellent post, Angie, and as you might know, I’ve written about my son Dan’s misdiagnosis of ADD as well….educating school personnel is so important, and I don’t know the size of Blake’s high school, but if it’s an average American school than he is likely not the only student with OCD. I think in-service training on OCD and other disorders should be conducted regularly. Thanks for bringing up this important topic.

    1. Hi Janet. Thanks for your comment. While it is a smaller school, I know for certain that there a number of other students there with OCD. Maybe it’s time to talk with the administration about a revolving mental health in-service schedule.

  2. I just found your blog. I have someone in my family with OCD. And the worrying about being morally right is the issue for them. I am so grateful to have more stories of people dealing with this so I can be better in relating to them. Thanks for sharing.

    1. You are so welcome! And welcome to my blog. I know it’s not so common to hear about the morality issue. When I tell people about it, they have a hard time understanding it’s OCD. And then people wonder what’s so bad about having a child who demonstrates such concern for others and general politeness. So glad you’re here!

  3. Pingback: Giving Thanks for Teachers Who Make a Difference | OCD In The Family

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