OCD From the Outside Looking In

Anonymous, Parent of an Autistic Adult

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Refusal to go to school, inability to go out of certain doorways, the need to wipe down surfaces with Windex or a wipe, an unwillingness to wear shoes that may have touched something the dog touched. The list went on, and all of these things were maddening and irrational to me.  My son’s insistence on these behaviors, his anger with me, and inability to articulate the cause was particularly difficult. This was life with my middle of three children while he was in his last year of high school in 1999.

My son, Alex*, is Autistic, and has ADHD, anxiety, and also later diagnosed bi-polar. He was out placed for 8th grade after a traumatic 6th and 7th grade public school experience where he was severely bullied and became suicidal. Fortunately, through much work and expense, he was placed in a small private school for disabled kids that he loved. After 12th grade, we succeeded in getting him an additional year of school to help him figure out his next step when school ended. But during this last year of school, he became more terrified of what would come after school, which I believe manifested in his OCD (Obsessive Compulsive Disorder) behaviors.

Our First Experience With OCD and Failed CBT Therapy

But his last year of school wasn’t the first time we had witnessed Alex’s OCD behaviors. In the 9th grade Alex became obsessed with the question of his own sexuality (in spite of us repeatedly reassuring him that any version of his sexuality would be fine). During this period, Alex was not sleeping and was obsessed with looking up sexuality information online, taking sexuality quizzes, watching porn to test his sexuality, repeatedly asking for validation, and texting his therapist.

That same year, the social workers at Alex’s school told us he had OCD, which was confirmed by his psychiatrist. Alex had been seeing a long-term therapist since he was seven, but she didn’t feel qualified to work with this diagnosis. The school social workers recommended Cognitive Behavioral Therapy to treat his OCD. We got referrals for a therapist and proceeded to have two therapy visits per week: one with the long-term therapist and one with the new CBT therapist. Every week Alex was given an exercise and every week he’d tell me he couldn’t complete the task because he couldn’t focus, which I believe was because of his anxiety and ADHD. After about a year, we gave up with CBT therapy. Alex’s OCD related to his sexuality eventually lessened, but has been ongoing.

Our Second Experience With OCD and Outpatient ERP Therapy

When OCD reared its head again for Alex in his last year of school, we were in the middle of a complicated time. I was looking for a new job, my dad’s health was declining, and we didn’t know what Alex would do after graduation. I was reluctant to try OCD therapy again because the first attempt did nothing but cost a lot of time and money.

Alex’s school social worker recommended inpatient ERP (Exposure and Response Prevention) Therapy. The International OCD Foundation describes the therapy this way: “The exposure component of ERP refers to practicing confronting the thoughts, images, objects, and situations that make you anxious and/or provoke your obsessions. The response prevention part of ERP refers to making a choice not to do a compulsive behavior once the anxiety or obsessions have been ‘triggered.’ All of this is done under the guidance of a therapist at the beginning — though you will eventually learn to do your own ERP exercises to help manage your symptoms. Over time, the treatment will ‘retrain your brain’ to no longer see the object of the obsession as a threat.”

This time my reluctance to the recommended inpatient treatment was because it would remove Alex from the environment he loved – his school – even though he was not attending regularly.  My thought was to try ERP therapy as an outpatient before going to the more extreme, inpatient approach. I found a very engaging, experienced ERP therapist that Alex related to and he proceeded to have one to three ERP sessions a week at her office. Unfortunately, he couldn’t find a way to do the ERP exercises on his own because they involved exposure to the thing that was most uncomfortable for him.

The outpatient ERP therapy continued after his June graduation, Alex’s OCD worsened over the summer with no defined path, a lack of routine, and his beloved grandfather’s death. Alex and I were in agreement that it was time to try inpatient therapy. I submitted an application for Alex for the inpatient OCD program at a hospital in Massachusetts. I was told Alex was a good candidate and was put on the waiting list.  He was accepted in mid-November, but because patients can’t leave the program, he would miss our family Thanksgiving and Christmas, so I opted for an early January placement.  

Ongoing OCD and Inpatient ERP Therapy

Early January 2020, my very worried and scared husband and I brought Alex to the hospital to drop him off for an unknown period of time. (We were told it would be as long as it took, really this meant as long as our health insurance covered it.) Alex had never been away from home except for staying with his grandparents alone the summer prior, which did not go well due to his obsessive behaviors and thoughts. We left him after our half-day orientation with him, and I cried leaving. It was worse than leaving our older son at college because Alex was much more fragile, and I wasn’t sure the staff would understand his autism and ADHD.  I’d been to many lectures and read many articles on the combination of autism and mental health and knew that these individuals are more complex to treat and rarely understood.

During Alex’s eight weeks there, he texted or called often and was very proud that he had meal tasks daily and that he did his own laundry. We attended weekly family therapy and then took Alex out to lunch every Saturday. He also took Ubers out to eat often in the evenings and saw friends who were not in the hospital. He made many friends and felt a community with the other people in the OCD program. Over time it was good for us to see and hear from Alex of the wide variety of people in the program and the sense of pride he felt at facing his fears. 

We did encounter difficulties with the therapy team understanding the complex nature of the interplay of OCD and autism and ADHD. Their expectations were often unrealistic for his executive functioning abilities, like managing his materials and journaling. Because the program is focussed on OCD and the expertise of the therapists is primarily OCD, it made it more difficult for them to navigate his multiple challenges and frustrating for us, his parents, in dealing with the therapists and staff. But ultimately, the experience did help Alex learn to manage his OCD.  

Ironically Alex was discharged from the hospital program March of 2020, right before COVID was deemed a pandemic. Alex came back out into the world that was shutting down and with the expectation that he routinely wash his hands and not touch surfaces — the very behaviors he had spent eight weeks unlearning. We were relieved that the nature of the world at the time didn’t set Alex back. He was extremely proud of living on his own, making friends, and learning to manage his OCD behaviors. He still struggles with OCD to this day, especially when his routine is interrupted or when his mental health suffers in other ways, but the inpatient ERP program did give Alex his life back.

I remind my son that he has gotten through these experiences through his strength and his willingness to seek help.  I am proud that he is now doing well, working, and following his passion in music.  I also know that there are resources available and that it is so important to keep trying to help your loved ones in need.

Learnings From Our OCD Odyssey

  • Inpatient treatment was scary to me and my husband, but the facility was high quality and it really worked for our son.  
  • It was very important for us to have regular contact with our son and his team while he was inpatient.  If this is not allowed, we would not have used the program.
  • I learned that OCD can become entrenched in our son’s mind the longer it goes untreated, and so the more intense inpatient ERP therapy was the best approach for his relief.
  • Good inpatient OCD ERP therapy is extremely rare in the U.S. It is expensive and has long wait-lists for admittance. Getting on the wait-list as soon as we were comfortable with the approach was critical.
  • Adults or children with OCD can often get state-supported health care funding, which can give access to the inpatient OCD ERP therapy if private health insurance won’t cover the treatment.

*Name changed to protect privacy

OCD Resources

International OCD Foundation

Clinical Treatment for Obsessive Compulsive Disorder

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