Nobody Nowhere

There are many symptoms, traits, or characteristics of Autism that still leave me confused.  One is that the traits that lead to a child’s diagnosis of Autism are not necessarily the traits they will always have.  Over time, some may diminish or disappear and others may pop up.  Junior was once tactile defensive to the point where he didn’t want to be hugged or even touched.  Now he loves hugs and kisses (as long as he has a bond with the person) and he will even ask to be tickled.  He still doesn’t like to get a hair cut or touch slimy things but that is all that is left of his tactile issues.  He would once eat anything I put in front of him, although he never ate much meat.  Now he is one of the pickiest eaters around (a common enough trait of Autism).

The eating thing really fascinates me.  Sometime during his early elementary school years, Junior developed this diet that outwardly appeared to be junk food based.  I thought it was one of those typical kid things consisting of an aversion to anything remotely healthy.  It wasn’t until I read Nobody Nowhere by Donna Williams that I figured out Junior’s mysterious diet.  He only eats foods in a certain color range.  Junior only likes foods in the white to gold color spectrum.  He likes popcorn, bananas, pineapple, cantaloupe, bread (not anything dark in color), plain vanilla ice cream, kraft mac and cheese, McDonald’s style french fries, and so on.  I also learned that some foods have textures that make him gag.  He used to love mandarin oranges but he can’t seem to tolerate them now.  We tried peaches, but the same thing happened.  He tried it only to have to spit it out.

When trying to explain his eating habits to the inexperienced, I get that look or comment that says…I bet if all he was offered were healthier foods then he would eat them.  I have also been told that Junior will try anything if he gets hungry enough.  I know that most people handing out their wisdom and advice are trying to be helpful.  At the same time, it gets frustrating to hear the same stuff over and over.  I know it isn’t usually one’s first instinct to stop and think that maybe things work differently with autists and maybe parents of children with Autism actually know what they are doing.  I even understand that is just human nature to spout out advice.  I don’t judge and I don’t fault.  It just gets frustrating.  It doesn’t help that when I try to explain the situation, some people insist that I must be making stuff up to make excuses for my son’s weight or behaviors.  I don’t like the idea that people insist either to themselves or directly to me that my child is merely spoiled rotten.  I wish that was the case because there is a cure for spoiled. My family is the minority and as the minority, we must suffer the opinions and ways of the majority.  I must use the same patience with others that I use with my son.  It just struck me that it is funny how I must deal with the public the same way I deal with my developmentally disabled child.  If people only knew how much they had in common with my son.  Maybe we are all a little autistic.

We have actually tried most of the advice given to us.  As a part of his treatment for eczema, we tried an elimination diet which excluded almost all of Junior’s foods.  I stood very strong and refused to give in because I knew we had to find out if any foods were making his skin condition worse.  At the end of two weeks, Junior had lost 14 pounds (this was before the Risperdal when Junior didn’t have the weight to spare).  He became lethargic.  He would not eat the permitted foods.  His allergist (the best in the area) admitted that even if the food was causing the allergies, the autism was interfering with a healthier diet.  He said he would support me should I want to stick with the diet but that I would have to prepare to admit Junior to the hospital for monitoring.  He said he would make sure that social services didn’t charge us with starving our child.  He said that he would wait as long as we wanted to, to see if Junior would come around to eating other foods.  I asked him what he would do if Junior was his own child.  He said he would not continue with the diet and would seek out other ways to manage eczema.

We continue to offer up other foods, in other color ranges in the hopes that this too shall pass with time.  He has developed a liking of green seedless grapes and he will eat a few cucumber slices at a time.  We haven’t given up, we have just adjusted our strategy.

Autism is mysterious indeed.

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0 thoughts on “Nobody Nowhere

  • May 20, 2009 at 2:24 pm
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    @bluejacky@xanga – Thanks for explaining. In the end is doesn’t really matter why something makes you sick if it makes you sick then it just does. I was just curious My friend doesn’t seem to have any problems with foods except bread. He can eat the bread I make from freshly ground organic wheat but not any other bread.

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  • May 20, 2009 at 1:55 pm
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    @echois23@xanga – Red foods like anything with tomato and grape juice give me severe heartburn when I have too much of them, was told once by a nurse I’m “hyper responsive to chemical change in my internal environment”.  Green foods tend to have a lot of insoluble fiber, and since I have digestive difficulties, too many veggies make me miserable without Librax and enzymes.  I’ve noticed eggs, potatoes, bread, squash, sweet potatoes, fish, chicken, cheese– the foods in this color range tend to be bland and friendlier to digest.  I never realized there is a color association until my husband pointed it out.  I LOVE yummy tasty colorful food, but I have been so miserable in the past that I guess I instinctively avoid those colors.  I can eat blueberries if they are mashed up enough in something that I can’t feel the fruit texture in my mouth, and I love the smell of peach, but for some reason fruits of ~any~ color get a gag reflex going.  I also don’t tolerate citrus, even though I love the taste.  I’ve written about my stomach problems and the diet I’ve had to figure out to survive without extreme misery, and it seems to get a lot of hits from search engine referrals looking for Asperger’s + stomach aches, so I wonder if the whole sensory overload thing with autism is also on the inside.  Consciously, I never noticed the color thing, I don’t feel I have a revulsion to colored food, and I would love to be able to eat more foods.  I also have odd revulsions to combinations like nuts in chocolate, even though I eat both separately just fine.  All these revulsions seem to go way back to being a very young child, and I don’t remember associating any foods with being ill and throwing up, except for coconut on cake.  I still can’t bear to feel coconut on my tongue, but that’s the only one I can remember a real connection to a reason.  I imagine, since many children tend to stick to peanut butter and mac and cheese at young ages, that bland foods are naturally instinctive for those ages since bland foods are probably less likely to ‘go bad’ and give the kids food poisoning.  That might be hard wired into the human brain.  I remember suddenly liking all kinds of food as I reached adulthood, watched my own kids do the same thing.  I think we crave more nutrients from a bigger variety of sources once we hit our 20’s because that’s about when our bodies start turning the corner and age as opposed to grow.  I think the color thing is worth investigating, but I don’t think color alone is responsible for unconscious choice, possibly that color happens to correspond with content that the body handles easier…?  Hard to say without scientific study.

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  • May 20, 2009 at 8:43 am
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    @bluejacky@xanga – Do you think it’s the actual color in the food that makes you sick … like the chemicals that make up the actual color. I’ve heard of people who had allergies to coloring itself. Or do you think it’s a mental thing in that it makes you sick because the color upsets you?

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  • May 20, 2009 at 7:44 am
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    I ate fruit until I turned 3, haven’t been able to get fruit down since because the texture gags me so badly.  I prefer pale, orange and yellow foods myself, which includes fish and chicken, and yellow vegetables.  I didn’t notice this until my husband pointed it out, and my obvious answer to that is it’s easier on my aspie stomach than other colors of foods, which give me terrible stomach cramps (this might be a somewhat common aspie affliction, I’ve run into it with other aspies).  The confusion is just as bad from the inside.  I’m aspie, I’ve been trying to figure myself out all my life.  The best I can boil it down to overall is neurological sensory overload is constantly just around the corner, and that includes feeling too much inside my body as much as too much coming in from the outside, and once I’m in overload, NO ONE understands that I need to be left alone until it blows over.  I think the children go through behavioral changes as their brains try to progress through what should be normal childhood stages, the same way normal kids do, but since nonnormal kids are so over focused on, no one seems to notice that itself is normal…  I can’t stand feeling water on my skin, but I loved swimming when I used to swim.  I know, weird.  I could go on for miles on what it’s like to be autistic.

    @echois23@xanga – I love your honesty.  =)  I raised a full time step child with fetal alcohol disorder, and I have higher functioning autism, so I’ve had a really different approach to raising kids.  My first thought when I see or hear a bratty kid is what is the discomfort level, and why is it being ignored.  Too tired, stomach ache, overstimulation when the parent drags the kid everywhere, many parents expect smiles and hugs and punish bad behaviors they themselves succomb to when they are also tired and hungry and PMSy.  I was a screamer and LOVED being sent to the blissful quiet of my room, and it irritated my mother that it wasn’t good enough punishment.  ???  I don’t understand adults who pamper cats and dogs and go to great lengths to try to understand them, but somehow gloss over the kid who doesn’t behave right.  Being patient with the ‘bad’ kid is very time consuming and takes a lot of effort, and robs other kids of the adult’s time, which makes it seem like bad behavior is being rewarded with attention.  It’s tough having a special needs kid around, and I’m saying this having been one myself.  I look back and feel bad for my poor mother.  =P  Back then they said everything was bad parenting, so she took a real psychological beating over me from her parents and peers.

    @xjadersx@xanga – I don’t mean to sound harsh, but if you have a child SO you will be loved with hugs and kisses, maybe a dog might be a better choice.  I was incapable of showing affection for many years as a child, and my mom got pretty hateful with me over it.  We had a pretty sad relationship.  I think a doll would have been better for her, pull the string, it says “I love you.”

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  • May 18, 2009 at 12:40 pm
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    I think I commented on this before suggesting colored glasses to see if that would change how he felt about foods in other color ranges… If you did try it, did it work?

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  • May 17, 2009 at 6:15 pm
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    I didn’t know that autism was so.. complicated. It seems to involve all parts of a child’s life. You must be so happy that he likes hugs and kisses now. I would be devastated if I had a child and then (s)he did not want to be hugged by me.

    I would suggest using “protopic” for the eczema. That’s what I use, but at first it makes you even more itchy so that might not work for him if he is not old enough to stop himself from itching. Good luck. Eczema is such an annoying thing. I used to cry from being so itchy.  

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  • May 17, 2009 at 4:42 pm
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    I think it is hard for those of us who don’t have autistic children in our lives to understand those who do because we are only seeing through our own side of the glass. The three children I have cusody of are all well behaved not by accident but because of the way they were raised. I very seldom stop to consider that maybe them being “normal” might have made my job easier(please don’t kill me I don’t know all the politically correct words). It’s easy for me to quickly judge parents who don’t appear to be exercising any control over their “bratty” children at all. It’s harder for me to take the time to sit down with you and ask you to explain your situation to me. It’s easier for me to say that girl is uncontrollable and not let her come to camp again than it is for me to learn the skills to help her maintain control. On your side just ignoring my discomfort with your “unruly” child. Or telling me she has autism without any further explanation is probably easier for you than to take the time to explain everything to me, maybe repeatedly,, since I work with children a lot and can’t always remember 200 childrens different individual likes and dislikes. I guess my point is that with all our lives going 100 miles an hours most people I have met on both sides would rather take the easier route.

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