What do you think of when you hear the words obsessive compulsive disorder – more commonly referred to as OCD? Most people do not think that OCD and CHARGE Syndrome go hand in hand, but many individuals living with CHARGE syndrome live with from OCD-like behaviors every day.
If you spend any time with Jacob, you will quickly learn that he has several things he is passionate about. These are things he wants to learn, do or talk about frequently. These are things like legos, trash, iPhones and stickers. These are the things that make Jacob… Jacob. However, these are also things that are common in people who lived with OCD.
Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5 defines OCD as
A. Presence of obsessions, compulsions, or both: Obsessions are defined by (1) and (2): 1. Recurrent and persistent thoughts, urges, or impulses that are experienced, at some time during the disturbance, as intrusive and unwanted, and that in most individuals cause marked anxiety or distress.
OCD Behaviors in CHARGE
While scholars do not believe that individuals with CHARGE syndrome all have OCD, there are similar behaviors that can be seen in both OCD and CHARGE individuals. These behaviors can be seen as repetitive question asking, stuffing items into slots (many times difficult to retrieve), repetitive tic behaviors, inability to switch tasks and consuming focus on one item or idea.
Jacob, for instance, we have noticed does many of these things. We recently had to clean out behind his oven after he dropped his iphone behind it- which is not the first time we has stuffed his iPhone somewhere. His first phone -the infamous red iPhone- was lost forever after being sent to the dump. Here we are years later still talking about that red cell phone because he is fixated on where it is. This fixation has been what has inspired our quest to learn everything we can about trash, compost and the landfill.
David Brown, who is known for his research in CHARGE syndrome, states that “a lot of what looks like OCD in CHARGE is really jus the reaction to having multi-sensory impairments.” This idea is that CHARGE individuals do not have OCD but instead of reactions to being unable to fully understand and process their environments- which causes them stress and leads to behaviors.
What causes this anxiety?
- From procedures or daily living
- Gastrointestinal Pain
- Pain from accoutrement byproducts like a tracheostomy, gastrostomies or implants
- Sensory Overload
- CHARGE individuals have multi-sensory impairments- sight, sound, sell, vestibular & proprioceptive deficiencies
- Having sensory issues make it more difficult to experience the environment like those around you and effects communication and relationships
- Not having all the information about your environment can lead to arising behaviors
How can we help?
While every person with CHARGE is different, there are many things that families have found that work across the board. Since anxiety and OCD-like behaviors influence mood, sleep, attention and interaction- it is important to work with each other to develop ideas that help to lessen these behaviors. Having open lines of communication (verbal, ASL, written, etc.) means that the individual is able to let you know what is going on- this helps the caregiver remove or lessen the stressor.
One tool we have found that helps Jacob with his stress and anxiety is a calendar system. In Jacob’s room we have a write board and a calendar that has his monthly, weekly and daily schedules on it. For Jacob, not knowing what is going on or when is stressful and causes him to have more OCD-like behaviors- we ease this by giving him a predictable tool that is scheduled in advance. This is a way for us to communicate with him and among his caregivers what is going on. The calendar system provides stable and effective communication as well as a foundation to help Jacob feel more secure in his day to day life. We also use this tool as a way to skill build! When we first started the calendar system, we used to to tell Jacob what was going on. However, as the months go by we are encouraging Jacob to help his caregivers develop his monthly schedule. This is helping him develop time management skills, working on the ability to choose tasks/activities and his use of technology by looking up times and dates of events.
When it comes to CHARGE, nothing is a simple fix. If you would like to learn more- follow the links below to resources.