by Jonathan Hoffman, PhD, Fred Penzel, PhD, & Robert Hudak, MD
What does “sensory dysregulation” mean? Do you have a child who chews on his or her shirt; constantly adjusts their clothing; is extra cranky about tags, seams, or loose threads; dislikes certain colors; has difficulty dealing with specific noises like chewing sounds (also known as misophonia) or loud noises (also known as hyperacusis); has aversions to odors that others barely notice; feels urges to touch other people or avoid touching certain textures; is a picky eater; or feels a strong urge to sniff certain objects, foods, or clothes? If so, here are some answers to questions you might have.
Children with obsessive-compulsive and related disorders, especially those with both a diagnosis of OCD and autism spectrum disorder (ASD), tend to have one or many of these types of sensory symptoms. This presents a unique set of challenges for parents and clinicians, who often seek guidance from the International OCD Foundation (IOCDF). While most questions about this topic concern children, the information provided in this article also applies to adults experiencing sensory problems.
IDENTIFYING SENSORY PROBLEMS
Defining a sensory problem is not easy, and while the term “sensory dysregulation” has been increasingly used, no one has clearly defined it. Does a child covering their ears in a park when other children are making noise have an issue with hypersensitive hearing? Do they have a neurology that makes it difficult to filter noises? Are they being perfectionistic and rigidly following an unhelpful “rule” in their own thinking that other kids should not be screaming? Or is it some combination of these issues? It’s difficult to say. It seems safe to state, however, that all sensory problems must have at least some psychological or behavioral components.
Sometimes children are very aware of having sensory problems, but many are not and may appear as if they are engaging in them automatically. Children who can recognize their symptoms and want help are, of course, better initial candidates for treatment. However, awareness training (described in more detail below) can help children who initially have trouble recognizing their symptoms learn to do so.
Keep in mind that sensory problems often defy logic. For instance, a child who says he or she cannot bear the sound of a parent’s pants rubbing together may have no problem at all tolerating the perhaps more objectively annoying sound effects of a favorite video game. Of course, this can be quite frustrating for their parents!
Like most developmental or behavioral conditions, sensory problems are more often found among boys. Although sensory problems can occur in isolation, they more typically present in the context of another condition or multiple diagnoses, e.g., the triad of OCD, ADHD, and Tourette or tic disorders. When ASD is also part of the diagnostic mix, sensory problems are prevalent and can be very severe.
WHEN TO SEEK HELP
A common question is whether a child experiencing sensory problems needs treatment. Treatment is indicated if symptoms are severe or are negatively impacting the child’s emotional state, self-image, or areas of daily functioning — such as the ability to do homework, get along with other children, or participate in fun activities. Sensory problems are also regarded as more significant if they interfere with a child’s overall treatment plan. For instance, imagine a child who is so busy pulling loose threads off his or her socks that they cannot truly engage in an OCD treatment exposure exercise. If a child has severe sensory problems, early intervention is preferred, as opposed to adopting a “wait and see” approach.
Children with mild sensory problems that minimally affect their lives or psychological state generally do not require treatment. In some cases, mild sensory symptoms may be much more of an issue for parents than for the child, and the onus is on the parents to learn to manage their own feelings and reactions. In some instances, mild sensory symptoms may improve on their own given time and maturity.
DOES MY CHILD HAVE SENSORY PROCESSING DISORDER (SPD)?
Another question parents often ask is whether a child experiencing sensory problems has sensory processing disorder (SPD), a diagnosis first proposed in the field of occupational therapy (OT) many years ago. “The Out-Of-Sync Child,” published in the 1990s, practically made SPD a household name. In fact, the Sensory Processing Disorder Foundation says that one in 20 people have this condition.
Many children with the sort of problems noted at the start of this article might be diagnosed with SPD by an OT, but so might be children who are highly sensitive emotionally, clumsy, or behaviorally dysregulated. Proponents of the SPD model might even suggest that a child who has been diagnosed with OCD (or other diagnoses such as ADHD, Tourette and tic disorders, or intermittent explosive disorder) “actually” has SPD.
Parents and clinicians should be aware that SPD evokes controversy even among some OTs, and currently is not recognized as either a medical or psychiatric diagnosis. The SPD model assumes that the various sensory, emotional, and behavioral problems present among children are due to a brain disorder impacting “sensory integration.” However, data supporting this theory is lacking. At present, there is not enough scientific rationale for the idea that addressing these behaviors will “fix” this alleged brain disorder. Nor is there a scientifically convincing reason for rethinking any other medical or psychiatric diagnosis as SPD, as sensory problems are better accounted for in the well-established models of OCD, body-focused repetitive behaviors (BFRBs), Tourette and tics, stereotypies, perseverations, and bad habits.
WHAT TREATMENT LOOKS LIKE
Although certainly not a cure all, many cognitive behavior therapy (CBT) techniques can be applied to sensory problems. A form of CBT called habit reversal training (HRT) includes awareness training. In awareness training, for example, a child that chews on their shirt might be asked to watch and describe each detail of this symptom in a mirror with the goal of increasing the odds that they will be able to identify and refrain from this behavior when it occurs naturally. HRT also teaches the child how to engage in more desirable behaviors that can compete with a sensory symptom (e.g., holding their arms straight down rather than covering their ears if they experience an annoying sound). Cognitive restructuring can help an emotionally sensitive child learn how to not take criticism or setbacks personally, as well as identify other unhelpful ways of thinking that contribute to sensory symptoms. Exposure exercises in which children are gradually asked to engage with sensory “triggers” can increase a child’s ability to tolerate uncomfortable clothing seams, tags, odors, sounds, or textures.
From our perspective, many recommendations made by occupational therapists using the SPD model overlap with recognized exposure-based interventions. We would consider it to be an exposure-based intervention, for example, for a child to be asked by an OT to engage with a texture or sound they would strongly prefer to avoid in order to benefit “sensory integration.”
Another concern about the SPD treatment model is that some of its methods seem to be promoting avoidance behaviors. While immediate relief resulting from avoidance behaviors may offer an illusion of improvement, many studies have found that avoidance behaviors increase the long-term symptomatology of conditions such as OCD and anxiety disorders. An example of prescribed avoidance behaviors in the SPD model is asking a child to retreat to a pre-designated clutter-free or quiet zone when feeling overwhelmed. Using popular sensory toys such as fidgets to reduce distress levels is a second example.
We recommend that clinicians who are asked about SPD and its treatment, especially in the context of an OT or pediatrician’s referral, have a straightforward discussion regarding concerns about this theory and modality. You could consider sharing a resource like this article with both the parent and the referring professional. In the absence of data supporting the SPD model and its associated treatments, we continue to recommend scientifically supported treatments such as exposure therapy and other CBT treatments.
Parenting skills training is also integral to the successful treatment of serious sensory problems, even for older children and teens. Some parents might reinforce sensory problems by paying too much attention to their occurrence without realizing it. It is not unusual for some parents to be overly sympathetic to their child’s symptoms by, for instance, searching high and low to find the “perfect” socks, taking painstaking care to serve food at exactly the right temperature, cutting out clothing tags, or avoiding making noises that distress their child. On the other end of the spectrum, telling a child that they could stop reacting to sensory triggers if they “really wanted to” or getting frustrated when this expectation proves to be unrealistic is counterproductive. Some helpful actions parents can take are to decrease the attention they pay to symptomatic behavior and to provide encouragement, praise, or even tangible rewards (for example, stickers) when their child resists an urge to engage in sensory-related symptoms or tries a different behavior.
SENSORY ISSUES IN THE CONTEXT OF AUTISM SPECTRUM DISORDERS: A CASE STUDY
Another form of behavioral treatment, applied behavioral analysis (ABA), might have particular utility for children who experience sensory problems within the context of Autism Spectrum Disorder (ASD). Here is a case example to illustrate how we might conceptualize and treat sensory issues in a child with OCD and high-functioning ASD:
Patient B. D. was a 10-year-old male with diagnoses of obsessive-compulsive disorder (OCD) and autism spectrum disorder (ASD) (high functioning). The patient was diagnosed at an early age with ASD, and displayed many sensory aversions. His diet was extremely limited, and he could only tolerate chicken nuggets, milk, French fries, pizza with the cheese removed, iced tea, chocolate chip cookies, and brownies (all foods that were either brown or beige in color). He could not stand the sight or smell of most other foods, and displayed gagging behavior if he was exposed to these foods or witnessed anyone else eating them. He had also been known to vomit on occasion in reaction to these situations. He showed particular disgust with, and avoidance of, pink or orange foods, and also appeared to be extremely phobic of eggs – in the shell, raw, or cooked. He was unable to even touch the outside of an egg carton, and could not be in the kitchen if an egg was being broken. In addition, he could not wear shirts with collars or buttons, gloves, or socks with seams in the toes. B.D. also had a strong aversion to the noise made by the family’s vacuum cleaner and would cover his ears and run and hide when it was turned on. He did not like the sound of certain words, and would correct anyone using them, trying to get them to use other terms for the same things that he preferred.
It was decided in this particular case to begin with exposure-based interventions in an attempt to increase the child’s ability to tolerate this long list of problematic situations. Fortunately, he had already received applied behavioral analysis (ABA) treatment which had taught him about earning rewards for learning and practicing desirable behaviors such as using language and behaving appropriately in social situations. We began working with his ability to tolerate different types of clothing that he had previously avoided. This was also helped by his joining a special Little League team and having to wear a uniform – something he was very motivated to do. This all proved to be successful, and we were able to then use this success to move on to dealing with disliked noises and words. This, too, was successful, using a combination of real-life and recorded exposures for increasing periods of time. He continued to work for preferred rewards which he was able to select from a menu he had helped create. Food aversions proved to be a bit more challenging, as his reactions to avoided foods were very visceral, and he was likely to gag and/or vomit. We were able to overcome problems associated in seeing eggs and touching egg cartons, but we were unable to help him overcome his fear of breaking eggs or seeing them being broken (in large part due to his refusal to work on these issues).
Again, using contingency management-aided exposure, we were able to add a few healthier items to his diet (such as fruit), and increased his ability to tolerate being around others who were eating foods he disliked. In an effort to get him to broaden his diet to even more foods, we tried to gradually introduce items that had some similarities to foods he was already tolerating. This, too, had its limits, and it was decided to hold off on further work as we had seemed to have reached the limits of B.D.’s adaptability at that time. We made it clear that after a break, we would plan to resume treatment and see if developmentally, he might be ready to make further improvements. Our goal was to leave him with a favorable impression of therapy, and with a willingness to commit to further work in the future.
DOES MEDICATION HELP?
Unfortunately, there are virtually no studies on the use of medications or medically based interventions in the treatment of sensory dysregulation in children or adults. Therefore, a clinically reasonable approach would be to try a highly recognized psychological therapy like CBT first. In the case of B.D., he was able to make significant progress in therapy without medication; patients who can make this type of progress with therapy alone would not be recommended for a medication trial for their sensory problems. If the patient with sensory problems is experiencing clinically significant anxiety that interferes with treatment or that causes significant behavioral issues, it would then be reasonable to consider medication therapy. Medications that are used to treat OCD and anxiety (e.g., serotonin selective reuptake inhibitors or SSRIs) should be considered as first-line pharmacotherapy.
As the case of B.D. illustrates, serious sensory problems can no doubt be quite daunting, but when properly understood and treated it can often be greatly improved. Based upon clinical experiences and the limited available studies, the main recommendation that can be offered at this time is to strongly consider CBT or CBT + medication as the first option for severe levels of sensory problems. Parent training is also highly recommended. Clearly, more research is needed in this important area.
Jonathan Hoffman, PhD, works at the Neurobehavioral Institute (NBI), which he co-founded with Dr. E. Katia Moritz. They specialize in services for individuals with obsessive-compulsive disorders and related conditions, anxiety disorders, neurobiologically-based conditions, and autism spectrum disorders. Dr. Hoffman is on the IOCDF Scientific and Clinical Advisory Board and the co-chair of the OCD and Autism Spectrum Disorder Special Interest Group.
Fred Penzel, PhD, founded Western Suffolk Psychological Services in Huntington, New York, where he is the Executive Director, as well as a practicing psychologist. Dr. Penzel specializes in the treatment of OCD, BDD, Trichotillomania (TTM), and other body-focused behaviors. He is on the IOCDF Scientific and Clinical Advisory Board and the co-chair of the OCD and Autism Spectrum Disorder Special Interest Group.
Robert Hudak, MD, is an associate professor of psychiatry, at the University of Pittsburg, and he is the medical director of the OCD Clinic at Western Psychiatric Institute and Clinic. He is the co-chair of the OCD and Autism Spectrum Disorder Special Interest Group.