My daughter with autism is 14 and non-verbal. Over the past few years, her obsessive-compulsive behaviors have become more of a problem— particularly around issues of food, hoarding, over-eating, etc. We have tried locking the food in cabinets and in the refrigerator. Unfortunately, it has been hard for us to be consistent in locking up all of the food, all of the time, and this inconsistency, in combination with her determination to hoard food has us frustrated! It is rapidly becoming a health issue because we are worried about her gaining weight. What strategies would you recommend in dealing with her food obsessions?
This is a very difficult problem and will probably require lots of brainstorming, creativity, and persistence. We now know a lot more about associated mental health issues and autism than we used to. Here are some general issues to keep in mind:
1) “Obsessions” are defined as persistent thoughts and preoccupations that take up a lot of a person’s time and interfere with their day-to-day functioning. In your daughter’s case, she may be spending a lot of time thinking about food, focusing on it and fixating on it. We now know that a substantial number of people with ASD have clinically significant problems with obsessional thoughts. The actual numbers range from 15-68%.
2) “Compulsions” are defined as frequent, persistent behaviors that are performed to reduce anxiety; however, these repetitive routines and rituals cause a lot of distress and interfere with a person’s day-to-day functioning. A common example is a person who is fearful of germs and thinks a lot about them (obsessions), then washes their hands constantly (compulsions) to reduce the worrying. In your daughter’s case, she may be thinking a lot about food and then performing behaviors – hoarding and eating uncontrollably, to feel better.
3) It is very important to remember that obsessive and compulsive behaviors are very biologically based. There are chemicals and structures in the brain of some people that encourage the development of these overly-focused thoughts and repetitive behaviors. Research on persons with autism suggests that there is probably a genetic link between anxiety (of which obsessive and compulsive behaviors are a part) and autism. Anxiety and autism tend to run in the same families. People with autism are at increased risk for anxiety problems. The neurobiology underlying both conditions may actually be related – it’s an important topic of research.
4) Similarly, obsessive and compulsive behaviors are also influenced by experience. The more practice someone has linking a compulsive behavior to the experience of reducing the anxiety generated by their obsessions, the stronger the connection becomes. For example, consider the child who is fearful of germs. The more time she spends washing her hands to rid herself of the germ worry, the more she will believe that she must wash her hands in order to be safe. Practicing the ritual continues it and strengthens it.
5) Psychologists have developed treatments for helping children with obsessive and compulsive behaviors. A lot of research has been done on this topic and the following recommendations are considered as best practice for a child/adolescent who is anxious:
a) Identify the specific anxiety symptoms that are interfering with your daughter’s adjustment and quality of life. Seek an assessment with a child psychologist or psychiatrist who can conduct a thorough evaluation and try to understand which symptoms to target for treatment.
b) Treatment usually needs to be family-focused, such that you and your daughter have identified strategies and supports for helping her to cope more effectively.
c) Consider lifestyle changes that may contribute to less anxiety for your daughter. Finding ways to reduce physical feelings of agitation and anxiety may be extremely helpful. Are there ways your daughter could have more exercise? Are there diet and sleep issues we can address? Are there significant stressors we can reduce? Does she have a wide range of fun and distracting activities that can make life more fun and enjoyable? Sometimes anxiety and obsessions and compulsions grow in a vacuum – so keeping children/teens busy and actively engaged in pleasant activities can be quite helpful.
d) Consider medication to reduce the anxiety and/or obsessive and compulsive symptoms. Medicines are usually used to reduce the physical distress many individuals can experience and may provide the support needed so that children and teens can make good use of other interventions.
e) The most effective treatments involve cognitive-behavioral therapy, which is a set of strategies aimed towards teaching people how to think differently, in order to behave differently. However, these techniques require language and may be a good fit for a child with ASD who is verbal, but not a good fit for a child who is less verbal (see below). These strategies (known as “CBT”) include techniques such as: thought-stopping, distraction, re-labeling, relaxation, and exposure/response prevention. This last technique (E/RP) literally involves breaking the chain between the obsessive thoughts and the compulsive behaviors by purposefully exposing an individual to distressing situations and then preventing the compulsive behavior from happening. With practice and support, the power of the connection decreases over time. This is not easy to do and requires professional guidance. Many child psychologists who are skilled at CBT will be familiar with E/RP. We are trying to take what is known about CBT for typical kids and modifying it for children on the autism spectrum – it’s a very interesting process and we are still trying to find the right ways to present these important techniques to children/teens with a different learning style.
f) For children who are less verbal, these therapeutic techniques are harder to design and to implement. We do not know as much about how to support less verbal children with anxious behaviors. The thought is that you would intervene on a more physical, immediate manner such as: increasing exercise opportunities, having free access to healthy snacks but continuing to restrict non-healthy foods, redirecting the child to relaxation exercises or other activities when she seems particularly driven by food, and providing lots of visual cues to clarify what she can have and when she can have it. In addition, trying to channel the food behaviors to another outlet can be quite helpful – is there an interest or skill that the child could explore, which, over time, might become a good leisure activity and replace some of the food-focused behaviors? For children who are less verbal, it seems particularly important for the parents to seek some professional consultation from a psychologist who can help brainstorm the best ways to help a particular child.
At JFK, we are trying to build a clinic around services for families dealing with anxiety issues in addition to autism. If you’d like to know more about those projects, please contact JFK Partners at 303-724-7643.
For this particular issue, consultation with a nutritionist may also be helpful for determining how to regulate food intake. In addition, families can locate a child psychologist with experience in CBT by looking through the Colorado Psychological Association website, under the “Find a psychologist” button. Enter the words “Child anxiety, cognitive-behavioral” to find practitioners who understand childhood anxiety. You may be breaking ground with the autism piece, but there are many skilled clinicians out there who do not think of themselves as “autism people” who could be quite helpful.
Information can be helpful to parents. Resources that may be useful for parents to read include:
Keys to Parenting Your Anxious Child by Karen Manassis
Brain Lock by Jeffrey Schwartz
Good luck to you as you try to help your daughter with this important issue.