I have been meaning to tackle this topic for awhile now. I am sensitive to it because it is very much one of those, "you have no idea what it's like until you've been through it" kind of topics and I generally shy away from statements like that because they turn people off and they can be insulting to well-meaning individuals who try to 'help.' So, in my experience, here is how the whole food sensitivity/aversion thing can go down for families dealing with autism.
If you are just getting your feet under you in terms of the whole autism thing, here is a quick refresher on what is it and what it can mean: Autism is a neuro-developmental disorder (not a mental illness) causing impairments in three main areas: Communication, behavior and social interaction. Many autistic individuals experience hypo or hyper-sensitive reactions to sensory stimuli. For more on the details of autism click here.
We can all agree that eating is a sensory experience, so by definition, this will be an issue for many autistic individuals. Textures, smells, tastes, visuals and environments can all add up to an extremely unpleasant experience for all involved. Kate is no exception. She has many food sensitivities and they go far beyond the taste of the food.
Here is what I need you to understand. As parents we want our children to eat well rounded meals. We want mealtime to be a pleasant experience. For Kate, we work very hard to make these two things happen. Here is a list of the foods that Kate will eat, and believe me this list has grown in recent months thanks to the efforts of her team:
Gluten Free - Bread and Peanut butter (Alex and I take turns making bread every other day)
Gluten Free- Waffles or pancakes
Are you noticing a pattern yet? Everything in this section is beige. Yes, that is extremely common for kids with ASD. They can reject foods solely based on colour. If you think that is ridiculous you can click here. If you are still with me, here is the next list of foods that Kate will eat:
Bananas (usually 4 a day)
We also feed Kate pureed squash and sweet potatoes each day because we sneak in essential vitamins, probiotics, omega-3's and a form of folinic acid we call 5M.
We are thankful that she has expanded her food preferences to include fruit.
Pomodori's Chicken Pesto Pizza (we have tried to duplicate it but she knows!)
*this is one area where we allow Kate to cheat on her GF/CF diet. Kate looks like she is having a religious experience when she eats this pizza. She adores it. We all do. Thank goodness for local businesses! Click here to learn more about them.
Because we have chosen a partly biomedical approach in Kate's treatment she is on a gluten-free/casein-free diet and this does further complicate her diet issues. Having said that, I want you to know, we feel that a nutritionally sound diet is paramount and we make changes if necessary.
Many times, and this will ring true with so many of you autism parents out there, people try to 'help' get Kate to eat something. They put it in front of her or break it into small pieces and sneak it on her plate. They ask her to eat it before she can receive a preferred food. They ask her to take just one bite. She never obliges. She usually gets worked up and she often refuses to eat altogether. Now, her grandparents, who feed her regularly are fully aware of Kate's issues and feed her accordingly. They know to introduce a new food by placing it near her but not asking her to eat it. They know the next step is asking her to touch it. Many weeks later she may allow this food to sit on her plate. Someday she might take a bite. The process is long and tedious and it is called a 'food expansion' program. Any OT could tell you all about it.
In the photos below you can see a progression of events that I set up to show you how easily Kate can be disturbed at meal time. We placed three of her favorite foods on a plate. Bananas top that list of favorite foods and she struggled to even look at her plate. She repeatedly asked to get down from her stool and was very upset. I removed two of the foods and Kate was able to focus in and enjoy her meal. She later ate both the banana and the strawberries but at different times. If you think a little 'discipline' would straighten her out then feel free to click here. If you understand that sensory issues can be painful and cause a great deal of anxiety for these children you can keep reading.
Below is the meal her five year old sister ate that evening: Chicken, potatoes and asparagus. Kate would find this plate offensive to smell, touch, taste or even look at. I promise, the parents of children with autism, understand there are 'picky-eaters' out there. This goes well beyond that. Some of you are nodding your heads. If you are shaking your head then please feel free to click here.
OK, that last one hopefully got rid of the last of the skeptics/haters (whatever you want to call them.) Below is a photo of Kate at a restaurant. I wrote about that experience here. It went well but as you'll read we take the win for very different reasons than other parents might.
More recently, we took Kate out for her sister Grace's birthday supper and we were thrilled when we got her to handle a piece of broccoli. We didn't mind that she kept repeating 'ewwww' as she squished it between her fingers. We were pleased that she didn't protest that is was anywhere near her. We certainly would not expect her to eat it at this stage. And, for your information, she would just as reluctant to try yogurt or spaghetti or skittles for that matter!
If you think these issues of rigidity and extreme preference are related to food issues only then you would be wrong. We also struggle to make changes in other areas of daily life. The amazing people at her daycare and her therapists are helping her with these issues of rigidity and they are making great progress.
I don't want to leave you thinking that we constantly battle with Kate to get through a day because that is the furthest from the truth. We maneuver a little, we finesse a lot and we make it work. All parents do this to some extent. We might just have to do it with activities that many of you might think are mundane like the seasonal change in clothes that is about to happen. How do I convince her to switch her winter coat for a raincoat and her winter boots for rubber boots? Thankfully, Kate has a team working on those tasks.
There are so many situations and issues related to sensory sensitivities that I could not possibly cover them in one post. I just wanted to make some of you more aware of the issues facing our kids. So, teachers, please don't judge mom and dad when a child brings the same lunch every single day and the entire lunch is beige. We are just asking for a little more understanding until we can figure all these things out.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)