Like most, if not virtually all autistics, I lived with a variety of sensory sensitivities my entire life. As a child, I was extremely averse to certain visual stimuli (particularly camera flashes), specific kinds of sounds, and the motion of an elevator. Luckily, these subsided as I got older. Two sensory issues that never went away, and that I live with to this day as a senior citizen on the autism spectrum, involve clothing sensitivities and selective eating. While the former, along with the others mentioned above, do not have any health implications or consequences to speak of, the latter involves some of the principal health concerns facing any individual, namely those of diet.
Although this issue affects a minority of autistics, it is far more common than many people realize and, as such, needs to receive much more attention than it currently does. I learned this years ago when, after giving a talk at an autism conference or workshop in which I mentioned this issue, I would regularly be chased by a desperate parent who wanted to talk to me because their kid had the same problem! More recently, I spoke with an acquaintance involved in autism advocacy, who answers questions for parents and caregivers of autistics; he informed me that this is the fourth most common issue about which he is asked. Clearly, this is a well-known and widespread problem that needs to be addressed, particularly where health issues are concerned. Unfortunately, given that I was never able to resolve it for myself entirely, I am not in much of a position to give advice about such. What I can do, however, is discuss some specific matters concerning the problem of picky eating among autistics of various ages and its effects on their overall health.
A Lifetime of Selective Eating
I usually describe my eating habits by saying that they are like those of a twelve-year-old and that I mainly eat foods that are typically found on a “children’s menu.” When I became involved in the autism community, I attended some workshops and presentations on issues like these. I soon discovered that not only was this known to happen among some autistics but also that their food preferences were uncannily similar; in other words, not only did the same food items tend to appear in the diets of different autistics, but these tended to be the same kinds of plain, bland children’s foods that I regularly ate (e.g., chicken tenders, burgers, French fries, grilled cheese sandwiches, plain pizzas, goldfish crackers, and similar fare). I referred to these as the “basic autistic food groups.”
Over the years, I learned about a variety of conditions that are now considered eating disorders. One of these was food neophobia, which is the fear of eating or even trying different or unfamiliar foods (check one box). Another is food aversion, in which a person is repulsed by some or even many kinds of foods (check a second box). Yet another is a selective eating disorder, in which only certain foods are eaten and which sometimes gets progressively worse (check a third box). More recently, a condition called ARFID (Avoidant / Restrictive Food Intake Disorder) has been recognized, and it encompasses all three of these (definitely check this box!). In every case, I immediately saw that it clearly and unambiguously applied to me. It is important to note that all of these are completely different from better-known eating disorders, such as anorexia and bulimia, in that they do not involve concerns about body image (dysmorphia) – strictly a relationship with the food itself. In autistics, it is probably best seen as a sensory integration disorder, which the vast majority of autistics live with some form of.
How Not to Dissuade a Picky Eater
As a young adult, those acquainted with my eating habits would sometimes advise me about how unhealthy they were and could adversely affect me as I got older. As with most people at that age, this was hardly a priority for me, and their words pretty much fell on deaf ears. At least, though, I could appreciate that this was done out of concern for my well-being, even if I did not share their preoccupation. Much more annoying, however, were people who wanted me to “broaden my culinary horizons” – their words fell on even deafer ears. Of course, many saw this as one of my many personal peculiarities, which often were mercilessly pointed out during much of my life. Clearly, none of this ever persuaded me to even consider changing my habits; if anything, just the opposite.
Once, in my early 20s, I met with an old college friend who had studied history and anthropology and who got into a conversation with me about the use, in some cultures, of dietary restrictions as a means of restricting members from interacting with those of other tribes. Coincidentally, around that same time, I shared an office with a religious Jewish co-worker who observed a very strict Kosher diet and would talk to me about meals during business meetings and trips at which there was nothing for him to eat, even when the hosts attempted to accommodate him. He also told me about how awkward and embarrassing this could be. I remember how strongly this resonated with me, which is very interesting, considering that I am neither Jewish nor religious.
It was shortly after this when it first dawned on me that eating issues affected my social life to a far greater degree than I ever imagined. The revelation hit me like a bombshell, and I was depressed for weeks afterward; unlike other issues involving health and (so-called) personal growth, socialization was of great importance to me because, as with so many autistics, it was an area of such great difficulty. This drove me to try to address the problem, which I was able to do with only minor and very limited success. Even at that age, it was very difficult to change my habits; as we get older, it becomes even harder.
The main insight to be gained from this is that, as with many other things, the only effective way to motivate an autistic person with selective eating issues to address such is to impress upon them that these are adversely affecting them in ways they actually care about, such as socialization or inclusion. Also, the earlier this is done, the greater the likelihood of a successful outcome.
Ways of Addressing and Treating These Problems
As with many autistic issues, the most effective way to address selective eating problems is to employ some form of early intervention. I have attended presentations given by clinics that specialize in these issues and provide therapies and interventions to treat them. While such places may not be accessible, let alone affordable, to many autistics, it is important that these problems be addressed, the sooner, the better, using whichever techniques are available and appropriate. Perhaps methods that have been used successfully in these clinics can be adapted for use by other professionals who work with autistic picky eaters or even in their homes by family or caregivers. What will almost certainly not work are traditional practices such as attempted force-feeding, threats, punishment, etc. (you could just ask my mother if she was still alive!). There is a need for effective techniques, especially for use at early ages, to deal with what is finally recognized as a widespread problem in the autism community.
As to health concerns, autistics suffer from many of the same issues as much of contemporary society, with obesity, diabetes, and other related concerns becoming alarmingly commonplace. Those with selective eating problems can also develop conditions that result from insufficiency of some nutrients and excess of other unhealthy chemicals. All of this, however, needs to be addressed in different ways than is done for the typical population.
First of all, healthier food choices are always preferable. Unfortunately, an autistic picky eater will not be easily persuaded of such (if at all), as this involves the above-discussed sensory issues and also requires changes in personal routines and habits (very difficult for many autistics). Once again, early intervention probably offers the best hope of success here. As people get older, personal preferences and routines become ever more difficult to change, and this can be even more so for autistics; as a senior citizen on the spectrum, I can definitely attest to this. In some cases, however, one may be able to give up an unhealthy food in favor of a similar but less unhealthy item, which is not so objectionable – believe me, even this is easier said than done, but at least it may be viable.
Barring the above, the use of nutritional supplements or medications may be of help. In my own case, I informed my primary doctor of my ASD and that I have selective eating issues. Every year, he performs a comprehensive blood panel, which will immediately detect any serious deficiencies that need to be addressed. I strongly recommend this for anybody with selective eating issues who has access to good medical care. Consultation with a dietician or nutritionist who is qualified to work with autistics (at least, with selective eaters) may also be a good idea. Such a specialist can determine what is missing from their diet and recommend either nutritional supplements or, better still, help to find tolerated foods that can remedy their deficiencies.
In the meantime, I take a daily multivitamin, fish oil, and a fiber supplement; having a strong scientific background, I am very skeptical about vitamins, supplements, and other “health-food” items in general, but regard these specific items as an “insurance policy” against deficiencies that might result from my less-than-healthy diet. In fact, one friend always tells me how amazed she is that I am still even alive, considering my eating habits! I also take a daily statin to control my high cholesterol (another result of my bad diet). Although a good, healthy diet is well known to be preferable to any of these means, they are nevertheless preferable to doing nothing.
In all, the number of autistics with picky eating problems is substantially greater than had previously been assumed, and their issues will need to be addressed to a much greater degree in the future.
Karl may be contacted at kwittig@earthlink.net.
