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.
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