By Lucy Wetherall
What do ARFID and Autism have in common?
Long before a connection between Avoidant Restrictive Food Intake Disorder (ARFID) and Autism Spectrum Disorder (ASD) was ever made, researchers and parents had noticed that many children with ASD also had “feeding problems” (Ledford & Gast, 2006). One meta-analysis even noted that children with ASD were 5 times as likely as children without ASD to have feeding problems (Sharp, 2013). Yet it would take until 2013 for the DSM-5 to categorize and label these feeding problems as an official psychological condition, ARFID. And now, with a recognized name for these “feeding problems”, researchers in both the eating disorder and autism field, as well as caregivers, and individuals, are further exploring this connection.
Many caregivers of individuals with autism, or those individuals themselves, may not be familiar with ARFID. Likewise, many parents of children with ARFID may not be familiar with how autism presents.
Autism is a neurodevelopmental condition characterized by difficulties with communication skills, restricted interests, and repetitive behaviors. Autism is a “spectrum” condition, meaning that one person with autism could be non verbal, and have a very narrow set of interests, and the other could be highly talkative and feel the need to repeat certain behaviors (e.g., tapping their fingers) (Durand, 2017).
ARFID is an eating disorder where certain food and intake is avoided or restricted. It is an eating disorder without distorted body image or shape/weight concerns. That is, a person with ARFID does not restrict their eating/avoid foods to lose weight, or to “look a certain way”. Instead, someone with ARFID struggles with maintaining their nutrition to the point where it can affect their weight/growth and/or social and psychological functioning, sometimes to the point where they must rely on supplements or tube feeding (Ornstein, 2017). As the psychological community’s understanding of ARFID has grown, so has knowledge of how its symptoms may appear. Current models conceptualize ARFID presentations as three overlapping categories:
-
Sensory sensitivity towards food
-
A lack of interest in food or eating
-
Fear of aversive consequences when eating (e.g. gagging or choking)
These presentations can occur simultaneously, so someone with ARFID may have sensory issues with, for example, soggy foods, and be afraid of choking when eating such kinds of foods (Thomas et al., 2017).
So then, how much of an overlap does autism have with ARFID?
Current research recognizes that autism is seen in those with ARFID at higher rates than the general population rate of 1.5%. Estimates of co-occurring ARFID and ASD range from 12.5% all the way up to 33.3% (Harris et al., 2019; Inouye 2021). Furthermore, it is more common for autism to be diagnosed in males than in females, and ARFID is diagnosed more often in males as well (Durand, 2017; Nicely et al., 2014). However, it is important to remember that these rates are coming from small and specific samples—the true rate of co-occurrence between ASD and ARFID in the general population is not yet known.
But what do these overlaps look like in practice?
One area in which there is an outwardly observable connection between ASD and ARFID presentations is sensory experiences. The sensory difficulties often experienced by individuals with autism and the sensory sensitivities found in many individuals with ARFID have strong parallels. Recent research has shown that children with autism display higher oral sensitivity, especially oral over-sensitivity, than children without autism (Chistol, 2018). This oral over sensitivity is also often seen in ARFID, where certain types and textures of food may feel disgusting, anxiety producing, or frightening to eat, due to their oral sensation (Harris et. al, 2019). Furthermore, some researchers hypothesize that ARFID patients with sensory sensitivity are not just “over-sensitive” to certain tastes, but that their taste perception is actually more intense—a mild tasting drink to you could taste very strong to someone with ARFID, not just “unfamiliar”. (Thomas et al., 2017).
Another connection between the presentations of ARFID and autism is the pattern of sameness and rigidity. As previously mentioned, individuals with autism tend to have narrow interests and use repetitive behaviors. In many ways, this can be viewed by a person with autism as a benefit—how incredible that they can focus so strongly on a specific subject or task! When it comes to other areas of life however, the same tendency of rigidly restricted interests and repetitive behaviors may cause distress. For example, in regards to food, many individuals with autism show a preference for sameness. This could look like eating only the same brand of peanut butter, and only eating breakfast at 9:00am, never earlier. (Zickgraf et. al., 2020). Changing from one food brand to another could be hugely distressing and overwhelming. Difficulties with the ability to set shift, or to change from one task or mental set of concepts to another (for example, changing from Brand 1 of peanut butter to Brand 2), have been seen in individuals with autism. What this increased cognitive inflexibility and rigidity means is that while someone with autism could cognitively recognize the new “task” (i.e., it’s time to switch brands and try something new), they may have difficulties actually doing the switching (Miller et al., 2015; Zickgraf et. al, 2020). The concept of difficulties in set shifting and rigidity has also been implicated in ARFID and even other eating disorders such as anorexia nervosa (Huke et al., 2013). So, for a person with autism and ARFID, both of these conditions may play a role in their ability to increase the types and brands of foods they eat.
What do current treatments look like for ARFID, and how can we take autism into account?
Before being able to receive help with co-occurring ARFID and autism, one has to be aware that they co-occur in the first place. That is why some researchers who have noticed the link between ARFID and autism are calling for increased screening for autism when conducting eating disorder screens (Harris et. al., 2019). After diagnoses are made, treatment teams and supporting providers can then work to take into account the ways ARFID affects autism presentations, and vice versa. If as a caregiver, or a patient yourself, you suspect your ARFID symptoms may be affected by autism, it is perfectly acceptable to ask or advocate for your medical or psychological providers to assess you.
Current and developing treatments for ARFID have begun to take into account the way characteristics often seen in autism (e.g. cognitive rigidity and sensory sensitivity) can be addressed. One treatment in particular, CBT-AR, or Cognitive Behavioral Therapy for ARFID, lasts around 20 sessions, and addresses sensory sensitivity through a mix of cognitive interventions, carefully and slowly planned exposure therapy—“first look, then touch, then smell, then taste, then chew” (Thomas, 2017 )—and parent support when possible. Other researchers also recognize that helping individuals with both autism and ARFID develop flexibility is important (Zickgraf, 2020).
The most important thing to know about ARFID and autism is that support and research on this connection is growing, and that your experiences do not exist in isolation. Just because current research did not previously know about or recognize your experiences does not mean that they were not deeply impactful to you or to your loved one. While one type of treatment (ex, CBT-AR) may be helpful for some, for others another intervention may be most effective. Ultimately, key to treating ARFID with co-occurring autism is recognizing that one may affect the other, and to find fulfilling recovery goals that fit with the person, their ability to access support, and their diagnoses.
References:
Chistol, L. T., Bandini, L. G., Must, A., Phillips, S., Cermak, S. A., & Curtin, C. (2018). Sensory Sensitivity and Food Selectivity in Children with Autism Spectrum Disorder. Journal of Autism & Developmental Disorders, 48(2), 583–591. https://doi.org/10.1007/
Durand, V. M. (2017). Autism Spectrum Disorder. In The SAGE Encyclopedia of Abnormal and Clinical Psychology (Vol. 1–7, pp. 373–376). SAGE Publications, Inc. https://doi.org/10.4135/
Harris, A. A., Katzman, D. K., Norris, M. L., & Zucker, N. L. (2019). 1.50 AVOIDANT/RESTRICTIVE FOOD INTAKE DISORDER (ARFID) AND ASD. Journal of the American Academy of Child & Adolescent Psychiatry, 58(10, Supplement), S162–S163. https://doi.org/10.1016/j.
Harris, A. A., Romer, A. L., Hanna, E. K., Keeling, L. A., LaBar, K. S., Sinnott-Armstrong, W., Strauman, T. J., Wagner, H. R., Marcus, M. D., & Zucker, N. L. (2019). The central role of disgust in disorders of food avoidance. International Journal of Eating Disorders, 52(5), 543–553. https://doi.org/10.1002/eat.
Huke, V., Turk, J., Saeidi, S., Kent, A., & Morgan, J. F. (2013). Autism Spectrum Disorders in Eating Disorder Populations: A Systematic Review. European Eating Disorders Review, 21(5), 345–351. https://doi.org/10.1002/erv.
Inoue, T., Otani, R., Iguchi, T., Ishii, R., Uchida, S., Okada, A., Kitayama, S., Koyanagi, K., Suzuki, Y., Suzuki, Y., Sumi, Y., Takamiya, S., Tsurumaru, Y., Nagamitsu, S., Fukai, Y., Fujii, C., Matsuoka, M., Iwanami, J., Wakabayashi, A., & Sakuta, R. (2021). Prevalence of autism spectrum disorder and autistic traits in children with anorexia nervosa and avoidant/restrictive food intake disorder. BioPsychoSocial Medicine, 15. https://doi.org/10.1186/
Miller, H. L., Ragozzino, M. E., Cook, E. H., Sweeney, J. A., & Mosconi, M. W. (2015). Cognitive Set Shifting Deficits and Their Relationship to Repetitive Behaviors in Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 45(3), 805–815. https://doi.org/10.1007/
Nicely, T. A., Lane-Loney, S., Masciulli, E., Hollenbeak, C. S., & Ornstein, R. M. (2014). Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorders. Journal of Eating Disorders, 2(1), 21. https://doi.org/10.1186/
Ornstein, R. M. (2017). Avoidant/Restrictive Food Intake Disorder. In The SAGE Encyclopedia of Abnormal and Clinical Psychology (Vol. 1–7, pp. 408–410). SAGE Publications, Inc. https://doi.org/10.4135/
Sharp, W. G., Berry, R. C., McCracken, C., Nuhu, N. N., Marvel, E., Saulnier, C. A., Klin, A., Jones, W., & Jaquess, D. L. (2013). Feeding problems and nutrient intake in children with autism spectrum disorders: A meta-analysis and comprehensive review of the literature. Journal of Autism and Developmental Disorders, 43(9), 2159–2173. https://doi.org/10.1007/
Thomas, J. J., Lawson, E. A., Micali, N., Misra, M., Deckersbach, T., & Eddy, K. T. (2017). Avoidant/Restrictive Food Intake Disorder: A Three-Dimensional Model of Neurobiology with Implications for Etiology and Treatment. Current Psychiatry Reports, 19(8), 54. https://doi.org/10.1007/
Zickgraf, H. F., Richard, E., Zucker, N. L., & Wallace, G. L. (2020). Rigidity and Sensory Sensitivity: Independent Contributions to Selective Eating in Children, Adolescents, and Young Adults. Journal of Clinical Child & Adolescent Psychology, 0(0), 1–13. https://doi.org/10.1080/
I am wondering if this apparent link would also apply to related disorders such as Asperger’s syndrome?
Hi Heather,
Thank you for your comment! You are correct that there is a link; and you make a great point about diagnostic labels that I could have clarified in my original post!
Up until 2013, the the 4th edition of the Diagnostic and Statistical Manual (DSM) thought of autism as a set of separate conditions. Asperger’s was one of these, along with other conditions such as Rett’s disorder, childhood disintegrative disorder, and persistent developmental disorder not otherwise specified (PDD-NOS).
When the 5th edition of the DSM was released in 2013, these separate labels for diagnoses were removed. Now, they are all a part of what the DSM terms “Autism Spectrum Disorder”. This was for a variety of reasons, and today, an individual who would be diagnosed with Asperger’s in 2010, or a different conditions such as PDD-NOS, would be diagnosed with ASD today. Some people who were diagnosed before this revision still use the labels of their original diagnoses, like, as you mention, Asperger’s.
The current research I cite in the blog post, as well as apparent connections, is about autistic individuals, and includes those who were diagnosed before 2013 under older labels such as Asperger’s.
This is very useful, and very objectively put together, thank you. Integration of both conditions and appropriate treatment seem difficult to find – depending on whether one looks in the autism or ED communities, one condition is often considered ‘primary’ over the other, and conflicting advice is given (e.g. the ED must be treated no matter the cost vs. the sensory perception of the ASD person must be respected and accommodated). I’d love to see more links to evidence based treatment approaches if you have them – thank you so much.
Hi Julia,
I’m so glad you find this post useful! You make an excellent point about conflicting advice and integrating treatment goals–I imagine you or your loved one must feel stuck between a rock and a hard place! When providing interventions or trying to modify eating behaviors, I think it can be useful to return to some questions around the goal of behavior/symptom change:
Is this behavior negatively impacting the person’s quality of life? (i.e. being too distressed to attend social situations like birthday parties where there is unknown food may be a target to change, whereas not liking chewing gum may not be an issue, and the person could be comfortable saying “no thanks” or not negatively impacted by that dislike)
Does this symptom cause distress/cause harm to the person or those around them? (ex, sad they can’t eat fruit, nutritional deficiencies, throwing food/plates)
Is the behavior sudden/distinct in onset? (ex, if a new fear of choking developed suddenly after a choking incident, it may be due to ARFID and not autism)
How can I treat this symptom in the best and most “realistic/reasonable” way for me/my loved one? (is it helpful to choose the new food/food group I’m going to try a week in advance (not a year!) versus being surprised with it?)
I am not aware of any evidence based treatment methods that directly support autistic individuals with ARFID. However, I am happy to link some more resources on CBT-AR, as well some links to other places that are using or developing evidence based ARFID treatment! Because there is no “gold standard treatment” for ARFID, I am also linking some clinical trials for patients and their families.
CBT-AR:
Mass General Hospital has an ARFID program that uses CBT-AR
https://www.massgeneral.org/psychiatry/treatments-and-services/eating-disorders-clinical-and-research-program
In fact, the researchers (Dr. Jennifer Thomas and Dr. Kamryn Eddy) that developed CBT AR are directly affiliated with MGH. They have written guided ARFID treatment guides and workbooks for patients, that can be used in conjunction with a therapist trained in CBT AR, but may also be helpful outside of formal treatment settings:
https://keltyeatingdisorders.ca/wp-content/uploads/2019/04/CBT-AR_workbook_12.4.18.pdf
https://www.amazon.com/Cognitive-Behavioral-Therapy-Avoidant-Restrictive-Disorder/dp/1108401155
Duke Eating Disorders center also directly treat ARFID, and has a few studies currently recruiting patients.
https://eatingdisorders.dukehealth.org/events/Avoidant-Restrictive-Food-Intake-Disorder-%28ARFID%29
https://eatingdisorders.dukehealth.org/available-services
Stanford Eating Disorders program is currently conducting a clinical trial on family based treatment for ARFID:
https://clinicaltrials.stanford.edu/browse-all-trials.html?ctid=NCT04450771
Lastly, Marcus Autism Center, along with other autism focused programs, has a feeding clinic. While ARFID is an eating disorder, many aspects of feeding and eating disorders can overlap. For some individuals with autism and ARFID, receiving treatment from a feeding clinic vs eating disorder program may be helpful.
https://www.marcus.org/care-and-services/feeding-program
Wherever treatment is sought, it is always acceptable to ask for either a referral to other providers or resources that can better meet the patient’s needs, or to directly ask how they would approach ARFID treatment in an autistic person. It is also always alright to provide feedback during the treatment process!
I hope this information has been helpful!
I was profoundly moved by your insightful article on the link between ARFID and Autism, which mirrors our family’s lived experience closely. We value the evidence-based resources and perspectives you provide. Our daughter, 22, whom we suspect is on the autism spectrum at Level 1, has faced considerable hurdles in securing accurate diagnoses and appropriate care. These challenges stem from a lack of current understanding about ASD presentations in women, the scarcity of diagnostic resources for adults with ASD in the Midwest, and her intricate comorbidities. Her medical history is further complicated by childhood leukemia treatment. Coupled with her adeptness at masking symptoms, this has led to numerous misdiagnoses by well-intentioned health professionals, a situation we now recognize as diagnostic overshadowing. Currently, we are witnessing signs of autistic burnout, characterized by a marked decline in her abilities and skills.
The past year has been particularly challenging following emergency surgery for a dermoid cyst causing torsion. Following this experience, she has had substantial and unintentional weight loss, and the condition remains unexplained despite multiple consultations with various specialists, including gastroenterologists, oncologists, and psychiatrists. This has propelled our concern for her well-being to new heights as she struggles to maintain a healthy weight and is dangerously close to emergency care. After researching peer-reviewed journals, I presented this option to her primary care physician, who agreed but didn’t know where to send her.
Amid these challenges, we turn to this community for guidance. Despite exhaustive efforts to seek help through our health insurance and consultations with medical professionals versed in these issues, we find ourselves at a crossroads, compelled to spearhead the search for the care our daughter desperately needs.
Our goal is to find a supportive environment that understands the unique challenges faced by individuals at the intersection of ARFID and autism and recognizes the need for specialized, compassionate care. Any recommendations or insights this community shares would be invaluable as we seek a path forward for our daughter.
Thank you for taking the time to read and respond to our plea. Your expertise and shared experiences are a beacon of hope for families like ours navigating these complex waters.