Feeding therapy? Please don’t!

There is an Autism Charity in my town that I had avoided contact with for a long time. Mainly because I just don’t trust charities. But recently they started doing things, like reaching out to adult autistics, embracing the Neurodiversity infinity symbol (instead of the Puzzle Piece) and Identity First Language (instead of Person First Language) and having an autistic board member, that convinced me to buy an annual membership with them. I even enrolled my kids in some of their activities, something I’m usually very reluctant to do as I don’t trust most places to “get things right”. Like I say, they seemed to be going in a direction I am happy with.

But then, they did something which has upset me a lot. I know their intentions were good, and they did it out of a desire to help autistic children. But I do wish they had put more thought into what it actually meant. Even the best intentions can have bad consequences.

What they did was this: They promoted a workshop being given in the local University by an ABA therapist specialising in “eating problems” in autistic children. My views on ABA can be found here, here, and here. But as I didn’t know too much about the person giving the workshop other than his ABA training, I decided to dig deeper. What I uncovered is very disturbing.

Dr. Keith Williams sees himself as an expert on ” Treating Eating Problems of Children with Autism and Developmental Disabilities”. In fact he has written a book with that title, as well as one with the horrendous title of “Broccoli Bootcamp”. Not wanting to subject myself to reading either of those, I looked up the sorts of things he endorses at his workshops. And this is what I found:

So many red flags.

Let me go through the points one by one.

1) “Small tastes” can be overwhelming. Even crumb sized amounts can be too much. Would you try a crumb sized taste of poo? Yes, that’s what some foods are like to us.

“Similar taste and texture” to foods we already like? You want to put us off eating those foods we like too?

Foods we used to eat but no longer do? Maybe we are sick to death of those foods or had a bad experience while eating them? I used to like Sambuca but then drank too much and it nearly killed me. I gag even at the mention of it now.

Foods that don’t require chewing so we don’t hold them in our mouths or spit them out? Seriously? You want to remove that one bit of control we have? We’ll try our best to spit it out anyway.

“Preferred beverage”? So, you want to risk dehydration by putting us off our favourite drinks too?

And he recommends several weeks of this…

2) Increasing the size of the poo you give us. Once you have ground us down so we no longer cry or scream. Seriously.

3) “Positive reinforcement”. Take away our favourite foods or toys, until we eat what you want us to eat. And take away your praise as well. Also what the hell is “appropriate mealtime behaviour” anyway? None of this respects autistic ways of being.

4) “Planned ignoring”. No. Don’t do that ever. Please. I’m begging. Our behaviours are communication. Ignoring them is so dangerous.

5) “Escape prevention”. Another huge red flag. And another violation of our human rights. Please don’t.

6) Meal schedule. Doesn’t that sounds nice? We like schedules, right? Nope. Not if it’s not something we had part in making. Imposed meal schedules are wrong. If we get hungry between meals, let us eat. Also, many of us have digestive issues and it’s actually really bad for us not to eat when we are hungry. I’m under strict doctors orders to eat many many small snacks through the day, whenever I feel hungry.

And the biggest red flag of all: no mention of WHY we are refusing those foods. No mention of sensory issues at all. Or digestive issues. Maybe the food tastes like literal poo, like I mentioned before. Maybe the sound of it being chewed sets off our misophonia. Maybe we have noticed our tummy hurts after eating it but we can’t tell you that. Or that something just “feels off” but we can’t describe it. There is always a reason. We are not refusing to eat the foods you want us to eat just for attention or to make you feel bad or to manipulate you. Please don’t make us eat it.

If you are worried about vitamin deficiencies etc, you can get prescribed a supplement. But you should only do so after getting medical testing. Just having a “hunch” that we have a nutritional deficiency is not enough. Many of us get plenty of nutrients from the few foods we eat. Pizza, for example, is an excellent source of nutrients. Please don’t let your fear of nutritional deficiency lead to you torturing us.

And it really is torture. My parents used so many of the techniques described above to get me to eat. They all backfired. There are foods that to this day I cannot even think of without gagging. Like turnips. And none of what they did actually led me to expanding the number of foods I ate.

What did help, was time. Being left in peace to explore when I myself was ready. Nowadays I’m quite an adventurous eater. I have tried so many foods that most people wouldn’t dream of trying. But all under my own steam, and of my own free will. These days I will eat, or at least try, most foods.

Just don’t ask me to eat turnips!

4 comments

  1. Thanks for presenting that and going through all the problems with it so clearly!

    I’m really interested in this topic, and it made me think about a talk I heard a few years ago on an approach recommended for children with ARFID by the University of North Carolina (UNC) Center of Excellence for Eating Disorders. Interestingly it wasn’t geared to autistic children specifically, but framed as being “for ARFID.” But it sounded like it contained many of the aspects you said worked for you, and avoided the problems here. It involved exposure to new food, as in, having it on the plate, but not making the child eat it or any of these punishments/’escape prevention’ for not eating it. And having a discussion with the child to help them be a ‘food scientist’ and talk about what sensory aspects (sight, sound, texture, etc) they like and dislike about their food. And accepting that there are some foods that they will just never like, and the parent needs to accept this and move on and not bring on all this stress. The speaker also made the exact same metaphor you did, that some foods can be perceived as not merely unfamiliar and anxiety-provoking, but disgusting, and like eating poo. Overall it sounded like it could potentially be a much less distressing approach than this one. I wonder if the director would recommend it for autistic kids or suggest any modifications to it. Fortunately my parents were pretty accepting toward my various food aversions when I was young, because supper would have been far more stressful if I had ever been told I *had* to eat something, or if my parents had gotten upset, or ignored me (!), for not eating what they wanted me to.

    Liked by 3 people

  2. Thank you for posting about this from a “professional” who thinks he knows autism. I did a blog post on “food choices” and another one on “mealtime.” For example, I recommend putting food on the plate for several days and let the child explore it (with his fingers or in his mouth–WITHOUT swallowing–IF he chooses). The idea is to introduce new foods without pressure. I have a big issue with “small tastes” because that reminds me vividly of my childhood of “just try it, how can you not like something you haven’t tried?” Notice the stress this puts on the child. (See # 5 on the list). No, you will NOT insist the child takes one bite. Is it any wonder between the media with skinny models and this stressful behavior towards food, that I had an eating disorder by high school? As I continued reading, the horror started to sink in. What’s wrong with “holding the food in ones mouth (to get used to it)? The mention of positive feedback was good in theory (as opposed to negative feedback) until he says “restrict access to these enforcers…” Excuse me? Then I really saw red with “planned ignoring of unacceptable mealtime behavior” now IF and it’s a big IF that meant say eating salad with your fingers that would be okay BUT that is not what he means. Apparently, screaming or throwing food is fair game. Um, no, it isn’t. And the last one about “not grazing” and trying to “increase the motivation to eat at meals” made me want to start yelling AND is the exact OPPOSITE of what I put in my mealtime article. Another so-called professional who thinks he knows best by coercing autistic people to conform to what neurotypical people want.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s