Food Issues
Forty years ago when we adopted our first baby at 4 months old, weighting 10 lbs, there was a note attached to him that said, “He does not like to eat!” I was lucky to get 2 oz of milk in him at a feeding. He’s fought eating most his life. At 40 he’s chunky because he’s obsessive/compulsive with the foods he likes. I tried all his life to get him to try all kinds of foods, to eat a balanced diet and regular meals, three times a day but it just didn’t work. He had a few foods that he liked and would pig out! Among his favorite were frozen hot dogs, frozen peas, peanut butter, eggs.
Medicine plays a big role in appetite. Some of the medicine that helps them focus and concentrate, also has the side effect of taking away their appetite. I give my Asperger girls their medicine a half hr before they have to get up for school so they will be able to focus enough to get dressed for school. By the time the meds kick in (about a half hour) their appetite is gone. It’s next to impossible to get them to eat breakfast in the morning. When my 16 yr old was much younger she had a wonderful teacher who was aware of all the Asperger issues and would ask her students to bring nutritious snacks to eat mid morning. Little boxes of raisins, little packages of fruit snacks, breakfast bars, carrot sticks, apples, a banana etc. It did seem to make the day go better.
Other medicines can cause carb cravings. My 16 yr old gained 50 lbs on Abilify. When she was younger she gained 26 lbs in 3 months, on Remron. On Topmax she would hardly eat and started to lose what she gained on Abilify. Topmax made her meltdowns worse so we discontinued that and put her on Geodon which has been the best so far. Vyvanse and different forms of Ritalin also causes loss of appetite.
My first husband was killed in 1994. I remarried 7 years ago to a friend who’s wife was killed in 1997. He knew nothing of Aspergers until we married. It’s taken some adjustment! Mealtimes can be crazy with Aspergers sitting at the table. So many things to make issues of, and so many meals ending up in meltdowns upsetting the whole family. So It creates less stress in our home to cook healthy foods, have it available and let them eat when they get hungry. My husband has had a hard time with our irregular eating habits, but he’s growing more accustomed to fixing a sandwich when he’s hungry. I miss the family time around the table, so I still often fix a meal for all of us and my 16 yr old can join us or not. There isn’t much quality family time around the dinner table when one family member is usually out of sorts with the rest.
Most kids like sugar. My Aspies seem to really crave it, almost like an addiction. I try not to buy or make many deserts, candy, sugared cereals etc. But when I have it around I keep it hidden back in our bedroom. If they know it’s in the house they will find a way to get it. Sugar does seem to make them less focused and more hyper.
Fingers verses utensils is another issue with many Aspergers. Even at 16 yr. she would prefer to eat everything with her fingers. We continually remind her to use her folk or spoon. I think it’s another sensory thing, needing to “feel” the food. Spaghetti, pudding, mashed potatoes etc. get a little messy with fingers. Also small motor coordination issues make holding the spoon difficult at times.
Other Asperger mothers have shared about their children wanting to use their fingers to eat with instead of silverware. The fact that it’s not socially correct is not a factor for the child. It’s kind of in the same category with not wanting to wear clothes.
Over the years I’ve learned to go with the flow, stress less, and pray a lot! Living only one day at a time, helps too!
How do you deal with food issues and your children?
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I am not on the spectrum nor do I have a child or even a family member who is, but autism has been a part of my life, often a major part of my life by choice, for 26 years! I met my first child with autism 26 years ago when I decided to do some volunteer work in a residential center for children with autism – I would go there some Saturdays to bake mostly cookies and muffins. Sometimes I would even have a young helper! And 26 years later I am still passionate about autism and again the focus is food but I am not baking!
For 20 years I was a special education teacher and probably always had at least one student who was on the spectrum. I treasured the time I was able to spend with them as a teacher – they taught me so much too! One young man I welcomed on his first day in school, I will be taking to his graduation from High School in two weeks! When I retired from teaching I then worked for 2 years as an autism consultant in our local schools – an awesome time it was! I met 37 students on the spectrum in 23 schools from Kindergarten to Grade 12; 37 very unique special people. Then I did retire for 6 months but was not thrilled with retirement so found a part time job as an early interventionist working with preschoolers with special needs and their families. I loved it and again was blessed with the opportunity to meet kids with ASD, help them and their families with developmental skills and transition to school. I was now also supporting some adults on the spectrum, who had been former students (and still do). This took me to a new environment – the institutions & group homes! yet another world!
I had to give up my job as an early interventionist to have the time I needed for my invention – a program to help children with autism who have issues with eating!
It was a friend’s cry for “HELP!” 27 months ago that led me to this invention. Her six year old son,who is autistic, had major issues with eating. She was frustrated and so was he! She and dad had tried everything to help him to expand his diet to include healthier choices but at the time he would much prefer hot dogs and rice! She knew I had a degree in nutrition and had been a collegue so knew my passion for autism and my ability to find creative solutions- she hoped I could help and I did! In fact what I created for her son Ethan was so successful I kept creating! I will come back here to do another post to talk more about how autism has now again become a major focus in my life………….
Short Stack has his favorite foods, and is not always open to different food types.
Wow, you totally nailed me! Eating with fingers, gagging at food textures, skipping meals because I don’t realize I’m hungry, and then craving carbs. I actually have to (even at 47) plan my meals out for the day every morning just to make sure I don’t tailspin into a blood sugar drop. I grew up on donnatal because my digestive response to internal change was miserating. One of my reasons for liking to touch my food (even though I have developed impeccable manners, ha) is that it feels like part of the eating process to me, to feel the texture and temperature, to be one with the food. Food is almost a spiritual experience since there is so much sensory involved with it (I’m not a continual eater or binger, don’t misunderstand), and I think a lot about human history when I’m in private and can take my time with my food. I love eating roast chicken right off the bones with my fingers, and think about all the people in the world who have eaten meat right off the fire over the millenia. I love feeling my bread, and the smell of it, spreading the honey around with my finger, and think about all the different ways bread is made around the world. I love picking through fish. I think it’s a very connected sort of feeling, a very human thing to really enjoy food in a tactile way. I’ve even eaten ice cream with my fingers. It feels much more indulgent. I actually eat less that way, too, because it takes more time and they say you feel full after so many minutes regardless of how much you’ve eaten. =) On the other hand, I would starve to death before I’d be able to get a slice of peach down, or any other fruit. Can’t explain it. Love the scent of fruit, can’t bear it in my mouth. Once in awhile my husband will give me a nudge in a restaurant if he thinks I’m using my hands too much with my food, but mostly I’m ok with it. One thing that helps me NOT use my fingers too much is that I’m also a germ phobe, so if I haven’t washed my hands, I won’t touch my food with my hands at all, I HAVE to have utensils or I’ll starve. That also goes for popcorn and nachos at the movies, I have to feel like my hands are washed free of doorknobs, and I can’t eat with the scent of lotion on my hands, etc. My mom thought I was a difficult child at mealtimes, and was always on my case to ‘eat right’.
When Josh was little, the age where most toddlers are happily picking every kind of food up with their fingers, he wouldn’t touch certain things. He would eat them if I fed them to him, but he would not touch them with his fingers. Even when he was about three, I was still having to feed him at most meals. He did not like to eat meat, other than the occasional bit of chicken. (Worked out fine for me, since I’m pretty much vegetarian myself…) At his first birthday, I made him his own little cake, figuring that like most kids, he’d dig right in… Nope. He sat there VERY carefully picking off the M&Ms one by one, avoiding getting any icing on his fingers. I have never been able to give him liquid medicine of any sort. He gags so hard it makes him throw up.