Childhood Obsessive–Compulsive Disorder (OCD) was once considered a rare disorder and has an estimated lifetime prevalence rate of 2–3% (Zohar, 1999). In the latest edition of the Diagnostic and Statistical Manuel of Mental Disorders (DSM-5), OCD is no longer classed as an anxiety disorder and has been separated into a chapter called OCD and related disorders. The impetus for the re-classification was based on research showing a number of commonalities across the OCSD’s (e.g brain circuitry abnormalities, familial/genetic factors, neurotransmitter/peptide abnormalities and treatment response profiles, specifically to pharmacological interventions). This category includes obsessive compulsive spectrum disorders (OCSD) such as: body dysmorphic disorder, trichotillomania (hair-pulling disorder), hoarding disorder and skin-picking disorder.
The re-classification of OCD has been a controversial shift (e.g., Mataix-Cols et al., 2007) as there was strong support for OCD to remain in the anxiety disorders category (Storch, Abramowitz and Goodman, 2008) consistent with harm avoidance models rather than the impulsive/compulsive information processing models (Hollander, Braun and Simeon, 2008). The APA (2013) has stated that while OCSD’s are distinct disorders, they have enough similarities to be grouped together. One of the similarities across the OCSD’s is “not just right experiences” (NJRE’s) which refer to the repetition of certain actions or behaviours until the child feels “just right” or gains a sense of “completeness” (Coles, Frost, Heimberg, & Rhéaume, 2003). NJRE’s have provided some challenges for clinicians as the compulsions are driven by sensory discomfort and some studies show NJREs are associated to high symptoms severity (Ferrão et al., 2012) and poorer response to treatment (Foa, Abramowitz, Franklin, & Kozak, 1999). The focus of this article is a qualitative clinical overview of NJRE’s. Firstly childhood OCD is reviewed followed by a discussion of NJRE’s and the current status of research. Lastly we will make some comment about the treatment implications of children with OCD and NJRE’s.
The diagnostic criteria for OCD in children are identical to that of adults, with the exception that children do not have to recognise the senselessness of their obsessions or compulsions. There appears to be bimodal distribution of OCD in terms of age of onset with childhood-onset OCD developing between 8 and 11 years (Geller, Biederman, Jones, Park et al., 1998; Geller, Biederman, Jones, Shapiro et al., 1998; Rosario-Campos et al., 2001), compared to adult-onset which typically develops between 19 to 25 years (Steketee, 1993). In terms of continuity, it is estimated that 50-70% of children with OCD continue to experience the disorder in adulthood (Bolton, Luckie, & Steinberg, 1995).Like adults, the presentation of OCD in children is highly heterogeneous. The majority of children with OCD manifest both obsessions and compulsions, with the content of the child’s obsessive and/or compulsive behaviour varying over time (Farrell and Barrett, 2006). The most common obsessions in childhood OCD includes the following:
|Fear of contamination (dirt, germs)||Certain grooming rituals, hand washing, teeth brushing, toilet, dressing|
|Wanting things to be in certain spots/places||Repeating rituals, including going in and out of doorways|
|Worry about “bad luck”||Needing to move through spaces in a special way, or rereading, erasing, and rewriting|
|Lucky and unlucky numbers||Checking rituals to make sure house is locked, homework in bag, mum going to pick me up, books not in rubbish|
|Angry thoughts about loved ones being hurt/violent images||Avoiding certain things or people being they are “dirty” (relates to germs and bad luck)|
|Fear of dying or getting a disease||Touching, tapping and rubbing rituals|
|Intrusive sounds or words||Rituals to prevent harming self or others|
|Not ‘just right’ experiences||Ordering or arranging objects|
|Becoming convinced that he or she hasn’t done something he or she is supposed to do.||Counting and blinking rituals|
In the last decade, there has been increasing interest in NJREs, as many children with OCD describe feeling “things are wrong” or as one of my clients describes a “heavy head” rather than “bad thoughts”. In my clinic, examples of NJRE’s have included:
- A young child exhaling deliberately onto her mother otherwise she felt she would “not feel right”.
- Another child has to use her left foot to exit rooms while another performs tapping behaviours to gain a sense of “completeness”.
- An adolescent boy described that everything had to be in even numbers so that if he was about to go through a door he would check his watch. If it was 12.47 he would wait until 12.48. At the supermarket, if the total was $37.30, he would need to buy something to increase the cost to $38.00 so it would be even. Nothing “bad” would happen if he did not engage in this compulsion, more he would feel “uncomfortable” and “not right”. This would escalate and the inevitable consequence would be frustration and behavioural outbursts until he could alleviate the urge.
- A young boy avoids lunch times because if he bumps into someone in the playground he would need to “rub off” their touch until he felt just right.
- Children with hoarding concerns often report NJRE’s. Typical responses when asking children with this particular issue what they would think/feel if we threw out a “treasured item” which may either be a lolly paper, bus tickets etc. are “I might need it”, “it is my friend” or a NJRE “it feels like I am missing part of me, it does not feel right”. Frost and Steketee (20011) discuss this concept in greater detail in their book “Stuff:Compulsive Hoarding and the Meaning of Things”.
As seen the common features of NJREs are a felt sense of incompleteness coupled with physiological shifts and behavioural urges to “make it right”. Some studies have documented prevalence of NJREs ranged from 70% to 80% in OCD patients (Ferrão et al., 2012, Leckman et al., 1994, Miguel et al., 2000). As mentioned earlier, NJRE’s are transdiagnostic and commonly occur in a range of OCSD’s like Tourette’s syndrome (TS).Worbe et al. (2010) found as many as 65% of patients with TS showed repetitive behaviours that could be classified as ‘tic-like’ or ‘OCD-like’ symptoms. Recently Neal et al (in press) showed that patients diagnosed with TS and co-morbid OCD/obsessive compulsive symptoms (OCS) reported significantly higher number of NJREs compared to TS patients without OCD/OCS. These authors concluded that NJREs appear to be intrinsic to the clinical phenomenology of patients with TS and can present with higher frequency in the context of co-morbid OCD/OCS, suggesting they are more related to compulsions than tics. Research investigating NJRE’s in OCD in non-clinical samples found (a) significant association between severity of NJREs and obsessive compulsive symptoms after controlling for anxiety, depression, and perfectionism (Ghisi et al. 2010); and (b) number and intensity of NJREs predicted compulsive hand-washing duration (Cougle, Goetz, Fitch, and Hawkins, 2011). A later study confirmed these findings by showing that NJRE’s predicted compulsive checking (Cougle, Fitch, Jacobson, and Lee, in press)
NJRE’s have also been linked with perfectionism, a belief often seen in childhood cases of OCD. Rasmussen and Eisen (1992) commented that many patients with OCD described a desire to have things perfect, and until this sense of perfection is achieved, patients reported feeling “not right”. Coles, Frost, Heimberg and Rheaume (2003) examined NJREs in large undergraduate samples. In the first study, NJREs were examined in relation to OCD and perfectionism. A large group of undergraduate students were given a range of psychometric tests including the NJRE-Questionnaire (NJRE-Q). Typical examples on the NJRE included:
- Feeling that you might have forgotten something
- A strange physiological feeling that you don’t recognize
- The feeling that you get when you think you haven’t done something perfectly enough, feeling unsafe or vulnerable for no recognizable reason
- Feeling that objects aren’t arranged in just the right way
The results showed NJREs were related to both features of OCD and perfectionism. A follow-up study using a larger non-clinical sample assessed: (a) the relationship of NJREs to OCD symptomology; and (b) whether NJREs is specific to OCD when compared to other anxiety and mood disorders. The results supported the first hypothesis being that NJREs were signiﬁcantly related to speciﬁc OCD symptom clusters (e.g., checking, ordering). Finally, NJREs were signiﬁcantly more strongly correlated with features of OCD compared to social anxiety, trait anxiety, worry, or depression. Collectively these two studies strengthened the link between NJRE’s, perfectionism and OCD.
So what does all of this mean in terms of treatment? Currently, if a child presents with OCD with predominantly NJRE’s, Cognitive-Behavioural Therapy (CBT), with Exposure and Response Prevention (ERP) should be offered as first-line therapy with combination therapy (CBT and selective serotonin re-uptake inhibitors) offered to patients with more severe OCD. However, when dealing with NJRE’s in treatment there should be a number of additional considerations:
- NJRE’s present in a number of OCSD’s (e.g ASD or TS) so there may be a number of co-morbid conditions and difficulties ascertaining the boundaries between OCD/ASD and TS. Psychometrics testing (e.g. NJRE-Q), delaying the diagnosis and monitoring the child over time may be the best approach to clarify the diagnoses. Additionally, setting up a number of behavioural exercises (e.g going in and out of doorways on an uneven number) may provide information about the motivation for the urges and assist in diagnosis.
- While NJREs can occur across all OCD symptoms there has been some evidence suggesting that NJREs are more common in ordering and checking behaviours (Kupfer and Gonner, 2013). Therefore, if this is the presenting issue, it may be beneficial to ask several “feeling” questions in addition to the “what is making you feel so worried?” question. If, in the session, the child is at a cognitive age where they could answer your questions, seems at ease and acknowledges active compulsions, it may be the case that the child is doing these repetitive actions because it is “not right until he/she does”. In the clinic I often find that I specifically need to ask them “do you have to keep doing this behaviour until it feels right?”, then “do you stop at a certain number, or when it feels right?”, “what determines when it is right?” the answer is eventually “just a feeling”. Then instead of the thought, the feeling is given a nickname and that is externalized.
- NJRE’s can present as disruptive behaviours. For example a child will refuse to wear a certain T-shirt because it does not feel right or a classmate will sit in the child’s “lunch spot” causing great distress, as to sit anywhere else would cause him to “not feel right”.
- While many children with OCD may exhibit mental inflexibility, children with NJRE’s have “rules” that may mask as “normal behaviours” (e.g having to sit on the left in the car) in order to feel in control. This is in contrast to other forms of OCD which often look unusual (e.g blowing on people). Due to this the NJRE’s can be seen as “naughty behaviour” more frequently. Psychoeducation for the family outlining that for the child this is a “have to” not “like to” can be beneficial.
- Treatment may be more difficult because young people with NJREs can be affected by virtually every part of the day whereas more typical OCD symptoms are triggered by specific things (Reid, Storch and Lewin, 2009). This may have implications for length of treatment and parental expectations.
- Traditional CBT techniques like thought challenging (e.g. is there any proof?) may be problematic as there is not thought just a felt sense. There may need to be an increased focus of diaphragmatic breathing, urge surfing and habituation through session and between-session exposures so the child can build tolerate to the physiological discomfort.
- As mentioned earlier there is a link between perfectionism, NJRE and OCD. Incompleteness is linked with feelings of tension/discomfort and a desire to perform tasks perfectly which is in contrast to obsession related to harm avoidance (e.g. “contamination fears). The varying motivation of the behavioural urges needs to be considered when designing behavioural experiments.
Our understanding of NJRE’s is still in infancy, however available research is providing interesting findings that may have far reaching etiological implications (e.g as reflected in the DSM-5). Treatment outcome data suggests that NJRE dominated OCD may have a poorer response (Summerfeldt, 2004; Tallis, 1996) and may benefit most from behavioural exercises encouraging tolerance to the emotional state of “incompleteness” rather than dysfunctional cognitions (Pietrefesa and Coles, 2009). Further research is required to more clearly understand NJREs in OCD and enhance treatment efficacy.
Emily O’Leary, PhD
OCD Clinic Brisbane
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