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ARFID

Adults with ARFID

Adults with ARFID
Dall.e

Avoidant Restrictive Food Intake Disorder (ARFID) was only recognized as a disorder affecting those older than age 6 as recently as 2013. Treatment and recognition of this disorder are in their infancy. Thus, many people with ARFID have lived with it for years without any treatment. Many adults with ARFID have simply had to learn to cope with it on their own.

I have been facilitating a free support group for adults with ARFID in California for the past two years.  During this time over 80 people have come through the group. This has given me a window into what life is like for adults with ARFID.

What is ARFID?

ARFID is an eating disorder in which difficulty in eating enough food negatively impacts either the patient’s health or their ability to manage school or career and social life. Unlike anorexia nervosa, bulimia nervosa, or binge eating disorder, insufficient eating in ARFID is not primarily driven by the desire to modify one’s shape and size.

It is important to recognize that ARFID is a heterogeneous disorder. There are three main types.

  • Sensory sensitivity. People who have sensory sensitivity have often been picky eaters since childhood. They may be very sensitive to differences in taste and texture and cling to a narrow range of foods, most often struggling the most with vegetables, fruit, and meats—the foods most likely to have been poisonous to our ancestors.
  • Low interest. Also often developing in early childhood, people with low interest tend to have less interest in eating, experience less hunger and find food less rewarding. It is theorized that these people may be born with relatively low hunger hormone levels
  • Aversive consequences. This type tends to develop later in life in those who have a predisposition to be anxious. In response to a triggering event—such as having the stomach flu or watching someone choke—people may fear potential negative events such as vomiting, choking, or gastrointestinal distress that can occur after eating. As a result, they may start to phobically avoid eating certain foods or eating altogether.

People with ARFID often have more than one type, and they may also have another eating disorder such as anorexia or bulimia, or a history of one.

There is one promising treatment for adults with ARFID and that is CBT-AR. While this can help many, my group illustrates that this treatment is hard to access and may not adequately address all the impacts of living with this disorder for many years. In fact, the creators of CBT-AR acknowledge that successful treatment will not likely make a person “a foodie” and there may be residual features.

Impact of Living with ARFID

While there is a multitude of differences among the people with ARFID, here are some common themes.

Being misunderstood. Many adults with ARFID report a long history of not knowing what was wrong with them, families not understanding how to feed them, and even professionals providing misdiagnoses (e.g., anorexia). Those who did receive treatment almost always report that they were treated as if they had anorexia—treatment providers refused to believe they did not have body image concerns that were driving their restriction. Most reported not fitting into traditional eating disorder spaces and many report never having met another person with ARFID.

Shame. Many adults with ARFID report shame about their limited diet or about their preferred foods. They feel embarrassed when they order off the kids’ menu or modify meals at restaurants or are unable to eat with peers. Some have been teased about their narrow palate. They report feeling very self-conscious when others ask about their eating struggles.

Overwhelmed by having to provide meals for themselves. When I assess people with ARFID, one of the questions most universally endorsed (from the PARDI, an assessment measure) is “I find eating to be a chore.” People with ARFID don’t typically look forward to eating; even so, they have to ensure they eat, usually 5 to 6 times a day to maintain a minimum healthy weight for their bodies. When eating is a chore, unrewarding, perhaps even terrifying, this can be a heavy burden.

Many have trouble preparing their own meals.  These people can benefit from support and structure. A participant who did fine as long as meals were provided by their workplace, started to struggle only during the pandemic when they started to work from home.  Many adults with ARFID have trouble identifying any foods that appeal to them and find choosing foods overwhelming.

Social consequences. The problems with eating have reverberations much beyond eating. It often significantly impacts social interactions because so many social interactions involve meals.  Many adults report their ARFID limits their ability to socialize. They may dread eating with others or socializing at all, feel left out when others are sharing food, and be so repelled by the food eaten by others that it is hard to even sit with them. One group member reported that whenever someone tried to comment on their food choice they would deflect to change the conversation. Others feel guilt for placing limits on where their friends can eat with them.

Sensory overwhelm. Many have sensory “superpowers” which can be more of a curse than a blessing. Many in the group report such a sensitivity to smells that they cannot be around others eating certain smelly foods, a disinterest in eating if something has been prepared in the kitchen or microwave before them. Several adults report problems with doing the dishes after meals because of disgust around the smells and residue on the dishes. People with ARFID report having to use various strategies to manage dirty dishes.

Difficulty with flexibility. Similarly, many adults with ARFID report strong allegiance to particular brands or restaurants and have great difficulty if any aspect of a preferred food is varied. Many can report that others have often tried to pass off a different product as “the same” and they can always detect a difference. This makes eating in different locations and especially travel, particularly hard.

Anxiety. Anxiety is a common experience for adults living with ARFID, especially in those with a fear of aversive consequences presentation. Research indicates that people with ARFID often have other anxiety disorders, including OCD. Many individuals with ARFID experience anxiety in areas besides eating.

Gastrointestinal distress. Overlap with disorders of gut-brain interaction (DGBI) are common. Many with a history of gastrointestinal (GI) symptoms may restrict eating in order to avoid further symptoms. An individual with ARFID may be more sensitive to sensations in their body and digestive tract.  They may also have a predisposition to anxiety which can contribute to GI symptoms. Nausea is a common sensation and several group members report assistance from medications that help with nausea.

Neurodiversity. Many group attendees self-identify as neurodivergent. Although research is limited, many researchers and providers have noted the overlap between ARFID and autism or attention deficit hyperactivity disorder (ADHD). Individuals with autism often have greater sensory sensitivity and rigidity, features that overlap with symptoms of ARFID. People with ARFID and neurodivergence may also struggle with issues of attention, information processing, and social interactions.

 

We need more resources for adults with ARFID as demonstrated by the participants in my group and their desire to learn more about their condition and to educate others. We are collaborating with other professionals to share and develop more resources for people with ARFID.

ARFID Groups

We have a FREE weekly Adult ARFID support group for adults in California with ARFID.

We also have a monthly support group for parents of people 10 to 20 with ARFID, open to people in any location.

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ARFID

How Diet Culture Can Harm Your Recovery from ARFID

by Carolyn Comas, LCSW, CEDS-S

People diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID) struggle with consuming adequate nutritional intake due to either 1) fear of aversive consequences (i.e choking), 2) low interest in food altogether, or 3) sensory sensitivity to food textures, smells, or appearance. Usually, people with ARFID do not report refraining from eating due to fears of weight gain or efforts to lose weight. In fact, many people with ARFID welcome weight gain and want to expand their food variety.   

The Impact of Diet Culture

The current Diagnostic and Statistical Manual (DSM-5) excludes those whose eating is restrictive due to shape and weight concerns from receiving a diagnosis of ARFID. However, this does not mean that people with ARFID are immune to the societal messages around food and bodies. Sadly, we all live in a world that is very much driven by diet culture. Most of us, with or without eating disorders, can be impacted by diet culture. We are constantly bombarded by many sources, ranging from the media to doctors’ messages about the danger of fatness and categorizing foods as healthy or unhealthy. 

Dieting is one of the leading causes of eating disorders. According to a study by the National Eating Disorder Association, 35 percent of people who diet progress into pathological dieters. Of this 35 percent, up to 25 percent will develop a full-blown eating disorder. People with ARFID could develop another eating disorder, such as bulimia nervosa or anorexia nervosa at some point in their life.

People with ARFID already face the challenge of limited food choices and heightened anxiety around eating. They can be very vulnerable to messages that their preferred foods  “aren’t healthy” or “junk food.”  This can lead to even more anxiety and shame around their food choices. People with ARFID thus have to battle their disorder as well as the concerns that diet culture imposes around food and body size.

Dieting encourages us to ignore our bodies’ needs. Diet culture emphasizes that our worth is based on the size of our bodies. In Christy Harrison’s book, Anti-Diet, she calls it “the life thief.” And that’s what it does- it steals the joy out of fun events or the everyday activity because it convinces us we need to carefully balance everything we put in our body. And if we go off the diet or “cheat” we are made to feel bad and unworthy causing a vicious cycle of yo-yo dieting. 

People with ARFID with whom we have worked report confusion around some of these messages, which clearly come from diet culture, and affected their ability to eat their preferred foods:

  • “Water is the only hydrating beverage and I should only be consuming water.”
  • “I was only offered wheat bread which I didn’t like so I didn’t eat bread.”
  • “I must eat vegetables in order to be healthy.”
  • “Fried foods are bad so I should limit my chicken nuggets and french fries.”

Standing up to Diet Culture

If you have a loved one struggling with ARFID it is recommended to check your own relationship with food and body image. Explore your own internalized fat phobia. Great books include The Body is Not an Apology by Sonja Renee Taylor and What We Don’t Talk About When We Talk About Fat by Aubrey Gordon. If you are worried about the types of food you or your child is eating because it is “unhealthy” check in on what you are really worried about. Is it truly about the nutritional value of the food or is there a belief that these particular foods can lead to being in a larger body? If the fear is being in a larger body then you have work to do. Learn about Health at Every Size® and recognize that the size of our bodies does not correlate to how healthy or unhealthy we are.

Remember, it is better to be fed than to be dead. If all you or your child can eat is chicken nuggets or french fries or potato chips or white bread (or all 4), then that’s what needs to show up at each meal and snack. You or they should have permission to eat preferred foods at every meal and snack without shame. With therapy, the goal is to incorporate more food groups and decrease fear and anxiety around novel foods. Realistically people who struggle with ARFID might never have the most expansive palette and that’s okay. If protein has to come from a package or be fried then that’s where the protein has to come from. Insisting that one food is better than another can make a person with ARFID feel ashamed, embarrassed, or more anxious about their food choices and further limit their eating. We never want to limit the food choices of people with ARFID beyond those limitations that the disorder causes. Choosing to feed yourself foods our culture considers “less healthy” rather than not eating is the best and dare I say–-healthiest choice there is.

When it comes to expanding variety and trying new foods we always have to start with what feels safe for the person with ARFID. While the goal might be to eat blueberries the first step might be eating blueberry muffins or chocolate-covered blueberries. The goals of treatment are to make meals less intimidating and have the patient feel like they can master trying new things. We don’t want to increase shame by disparaging their food choices.

We need to create peace, joy, and relaxation around meals. Labeling food “good” or “bad” or “healthy” or “unhealthy” can increase anxiety and discomfort.  Patients may second guess their food choices or end up becoming even more limited in what they eat. A fat-phobic mindset can be intimidating. Taking a Health at Every Size ® approach will be as important as it is in the treatment of anorexia and bulimia. It is the safest approach to navigating the world of diet culture. 

Let’s push back on diet culture and spread the message that all bodies are good bodies regardless of their size. We need to make the world safe for people in fat bodies and for those in thin bodies who are fearful of becoming fat. Ultimately, diet culture is not only harmful to people with other eating disorders but is also harmful to those with ARFID.

Groups at EDTLA

We have groups for adults with ARFID as well as parents of teens with ARFID. For more information, check our Groups page.

Categories
ARFID

ARFID Parent Support Group

We welcome parents of youth 10 to 20 with Avoidant Restrictive Food Intake Disorder (ARFID) to our virtual support group.

Parenting a young person with ARFID is challenging. Feeding a young person with ARFID is extremely challenging. Meals may feel like a constant struggle. You have likely been given conflicting advice about whether to cater to their food preferences or not. You may feel like you’re running ragged searching for their preferred brand of yogurt or chicken nuggets or having to bring home the exact right fast food every night. You may have run out of ideas for what to serve them. They may be eating the same eight foods over and over again and the list of foods they are willing to eat only seems to get smaller over time. You feel worried about their health and you know they are not getting enough nutrition.

We have been supporting parents in supporting their teens with ARFID. Our work is rooted in Family-Based Treatment for adolescent eating disorders and Cognitive-Behavioral Therapy for ARFID. In our work with families of teens with ARFID, we see how hard it is to parent and feed and support recovery. This is why we have created a monthly support group for parents of teens with ARFID.

This monthly group is alternately led by Lauren Muhlheim, Psy.D., CEDS-S and Carolyn Comas, LCSW, CEDS-S over zoom. We will provide psychoeducation about ARFID, the different types of ARFID, how it may develop, maintaining factors, and recovery strategies. Parents will be able to share struggles and successes.

To Register

For more information about the group, please contact Hello@EatingDisorderTherapyLA.com or you may register for the monthly group (priced at $30) on our group page. (Please be sure you are registering for our monthly ARFID Parent group and NOT our free weekly Adult ARFID group.

 

Below are some strategies for supporting your teen with ARFID:

 

Categories
ARFID

Supporting Your Loved One with ARFID

by Carolyn Comas, LCSW, CEDS-S

There’s an eating disorder that often gets overlooked amongst the better-known eating disorders like Anorexia Nervosa, Bulimia Nervosa, and Binge Eating Disorder. Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder that can involve difficulty tolerating certain foods due to textures, tastes, or smells. It can also manifest as avoidant behaviors stemming from a trauma around food such as choking or getting sick from eating a particular food. Some people worry about whether they are going to be able to swallow food or they have an aversion to throwing up. ARFID can present as a lack of interest in food altogether.

This eating disorder can result in very limited food selections which in turn can lead to medical complications such as low weight, failure to gain weight during childhood, developmental delays, malnutrition, and vitamin and mineral deficiencies. Many people who struggle with this disorder share how uncomfortable it is to eat out socially and feel isolated from peers and family. It can be a very frustrating disorder for the individual who has it and certainly can be difficult for the caregiver or loved ones supporting a person struggling with ARFID. Many people who have ARFID do want to eat. Unlike people with anorexia nervosa and bulimia nervosa, people with ARFID usually do not have fears of weight gain or their body changing.

It can be hard to sit across the table from someone you love and see them unable to feed themselves even when they are hungry. It can be hard to understand and relate to a person with ARFID’s lack of interest in eating or fears that arise around certain foods. Many times caregivers find themselves accommodating meal times by cooking specifically for their person with ARFID or having to plan out exactly what foods will be available to eat when away from the home. 

How do you support the person you love as they are trying to recover from this eating disorder?

First off, validation. The recovery process can be really hard. For many people with ARFID doing food exposures is an important element of treatment.  This means they are trying foods that they have been terrified of eating or practicing eating to prove their fears are not coming to fruition. It is a scary process to face these fears. They may feel anxious and overwhelmed. Let them know that what they are feeling is real. Validate their feelings. Acknowledge how tough this must be for them, and share that you believe they can do it. 

Second, have patience. ARFID is often seen in children but can last well into adulthood. Many of my own clients have been restrictive eaters since they were babies and toddlers. For years families have found ways to feed them and that often involved negotiating with what they would eat and sticking to these safe foods. You may have found yourself making separate meals for your family member and not going to certain restaurants because you knew there were no food options for them to eat. As your loved one begins to do exposure work with foods it will take time for them to become more comfortable. You may want to say, “Just eat” or get frustrated by their continued refusal. Remember that expanding their food variety is a slow process. Pressure and anger are not helpful. In fact, they may be shaming. Encourage your loved one to practice trying new foods every day. Remind them the more they practice the easier this will become.

The third thing that is helpful is allowing them to have agency when it comes to their food choices. People are more likely to try foods that they are interested in versus feeling compelled to eat a food when they do not want to or are not willing to try it. The process can feel less intimidating. As a parent, you may find yourself in less of a power struggle with your child if in the past they have held up strong resistance to tasting new foods.

Fourth is education and support. It can be very powerful to learn about ARFID and its symptoms. It may also be helpful to reach out to other caregivers who have gone through this process. Many parents feel helpless when their child refuses to eat. Having support from a therapist, support group, and medical providers can feel empowering and also help relieve some of the burdens you may be placing on yourself.

If your loved one has a phobia of vomiting, you can learn more about supporting them with that phobia.

Fifth is learning about diet culture and not making judgments about the preferred food choices of your person with ARFID.

If you or someone you know is struggling to eat due to aversions or fears there is help available. Checking in with your medical professional first can be a good place to find out if your loved one is under-weight, has deficiencies from lack of nutrition, or is experiencing any other health complications. At Eating Disorder Therapy LA, I  and other therapists have been trained in helping ARFID patients recover. There is hope–and recovery from this diagnosis is very possible.

We provide individual treatment for teens and adults with ARFID and also have a FREE virtual adult ARFID support group for people in California.

Categories
Eating Disorders Los Angeles

ARFID talk for LACPA Professionals in Los Angeles

Harvard Health Publications, Jennifer Thomas
Date:  Thursday, January 18 at 7:30 PM

Presenter:  Jennifer Thomas, Ph.D.

Title: Avoidant/restrictive food intake disorder: Assessment, neurobiology, and treatment

NOTE: This talk has already occurred. If you are looking for treatment for ARFID in Los Angeles, we encourage you to visit our ARFID page.

Description: Avoidant/Restrictive Food Intake Disorder (ARFID) was recently added to the Feeding and Eating Disorders section of DSM-5 to describe children, adolescents, and adults who cannot meet their nutritional needs, typically because of sensory sensitivity, fear of aversive consequences, and/or apparent lack of interest in eating or food. ARFID is so new that there is currently no evidence-based treatment.  This presentation will discuss how to recognize and diagnose ARFID, share preliminary findings from an ongoing NIMH-funded study of its neurobiological underpinnings, and describe a new cognitive-behavioral treatment currently being evaluated in an open trial.  

Bio:  Dr. Jennifer Thomas is the Co-director of the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, and an Associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School. Dr. Thomas’s research focuses on atypical eating disorders, as described in her books Almost Anorexic: Is My (or My Loved One’s) Relationship with Food a Problem? and Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder: Children, Adolescents, and Adults. She is currently principal investigator on several studies investigating the neurobiology and treatment of avoidant/restrictive food intake disorder, funded by the U.S. National Institute of Mental Health and private foundations.  She is also the Director of Annual Meetings for the Academy for Eating Disorders and an Associate Editor for the International Journal of Eating Disorders.

Location:  The office of Dr. Lauren Muhlheim (4929 Wilshire Boulevard, Suite 1000, Los Angeles) – free parking in the lot (enter on Highland)

RSVP to:  drmuhlheim@gmail.com

SIG meetings are open to all LACPA members.  Nonmembers wishing to attend may join LACPA by visiting our website www.lapsych.org

We are now treating ARFID at our office in Los Angeles. Please see more here.

 

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