Kids with Autism and Autism Spectrum Disorders and Sugar

Suzy Mac asks from Pittsburgh, PA
19 answers

I need some back up, ladies.

I'm glad I wasn't writing this last night, as I was so upset I would have used a lot of choice words for my in-laws. Looong story short, they all think I am a neurotic Maunchasen-Mommy who wants to "deprive" her daughter of "part of a regular childhood" by not allowing her to have sugar. My dd wasn't even ASKING for cake, and my MIL (right in front of me, more than once) kept saying (loudly) "Eat your dinner and you get dessert as a treat!" "Can't she have SOME CAKE, Mommy?" "WHY can't she have CAKE?".

My 4 year old ds who has ASD acts possessed if she even has ONE bite of something with refined sugar. ALL of her Autie comes out, she will zone, script, stim, have consecutive outbursts for 2 days following (this is why I said, "No offense, Mom, but YOU don't have to deal with her for the next few days, now, do you?!" )

I now see the same thing starting to happen with my 2 year old (he's been a mess all morning thanks to cake last night). I was in the bathroom when they brought out the pinata and heard everyone snorting and giggling bc I had my kids stay in the other room, "Seriously?? She won't even let them do THIS??" hushed whispers. I was so pissed I took the kids and left.

I am SICK of this. I need support and reinforcement. I would love links, resources, stories, to back me up (and before you say your child, your choice and forget it, you don't know my in-laws..they are worse than the freakin' KGB). My hubby is *somewhat* on board with this no-suagr thing, but he has been known to sneak it to her over and the in-laws. All they see is them going to town on the sugary carp, then I have to deal with the poor things needing a straight jacket fof the next few days.

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19 Answers

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DJ M.

answers from Harrisonburg on

I am the dad of an autistic 3yo and have autism myself. I know this is an old post, but it's still an issue, and I want to weigh in. As a child, my autism symptoms were moderate--I was a social outcast because I always said the wrong thing, couldn't read body language, and couldn't navigate basic social interactions. Eye contact was impossible. My parents will confirm that I was (politely) a difficult child. This was before there was a diagnosis for autism, so they had no idea why.

I was also raised on a diet heavy in Tang, Frosted Flakes, and Milky Way bars. Of course I didn't complain about that--I ate candy bars as often as I could get them. In my 20s, I started to notice the correlation between eating sugar and reduced ability to function socially, so I cut out sugar. I also began to "compensate" for my autism better with a lot of coaching from patient people. Today I still have social challenges, but most people don't realize that I'm on the spectrum.

A few weeks ago, in a grad school class, I ate a muffin that had reduced sugar--about a third of what the recipe called for. I thought I could "get away with it." Within minutes, I was stuttering and struggling for words. I don't get hyperactive from sugar, I get "brain-bound," like my brain just won't process. From the outside, it looks like I've been sedated, but on the inside I am churning, trying unsuccessfully to cope with and respond to the stimulus coming in. Visible hyperactivity is not the only possible effect of sugar.

It affects my autistic son, too, just in different visible ways. He's higher on the spectrum than I am, speaking in scripts, unable to interact at all with other children, and performing more obvious and frequent repetitive behaviors. (Though I have been able to teach him to make eye contact!) When he eats sugar (which my wife allows him to have fairly regularly), he communicates less effectively.and has more meltdowns. I would NOT describe his reaction as hyperactive-- just increases in existing behaviors.

I recognize that everyone with ASD is different. Maybe some are not sensitive to sugar. Clearly not all of us react to sugar with hyperactivity. But I look back on my childhood and wonder, if my parents had known how much sugar increases my symptoms and had eliminated it from my diet, if I might have had a very different life. On the other hand, from their perspective, sugar appeared to calm me down and make me more manageable--and they had no idea what was going on inside me.

amyinwi

answers from Milwaukee on

Okay... Well first of all I think most of the comments made here are relating to your mothering or your choices and the idea of why you are doing this... I think your actual question is how to educate and get your in laws to accept your way of living and choices for your children.

As cheesy as it sounds I think you should get together printed articles, websites, even a video of your child if she were to have sugar and the result of that happening.

Although I don't necessarily agree with this article and my kids are on the spectrum and do get sugar, I think this link could be the start of a list of references for your in laws.. http://www.relatetoautism.com/index.php?subform=article&a...

We all need to respect each others choices in parenting. <3

Amy

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Cheryl B.

answers from San Pablo on

I agree completely with Dawn. Let them have her overnight after they've given her cake or some other sugary dessert. I'm sure they just don't realize the consequences but more than that, they don't understand that your daughter is suffering from the after-effects of the sugar. No grandparent wants to be the cause of their grandchild suffering. You have to bring it home to them.

If they can't/won't take the kids overnight after giving them sugar, then make a video for them. Somehow they are going to have to "see" it to believe it.

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Doris Day ..

answers from Miami on

Suzy, have your inlaws had to take care of the kids after eating the cake? Or do you run home as soon as they start acting up so that the inlaws don't have to deal with it?

I suggest that you sit down and have a talk with them and tell them why you don't give refined sugar to your daughter. Start with HER. Tell them that you would like them to at least listen to what you are saying her and try to at least SEE what you want them to look at. Spend a day with them in which they agree to no refined sugar at all so they can see THAT behavior. Then spend a day when they give her cake and then let them see how she reacts. Then leave her with them the next day and let them live with the results.

It's the only way you are going to convince them, I have to say. Otherwise, this is going to be a losing battle everytime you see them.

Dawn

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Melissa L.

answers from Vail on

My son has Spectrum Disorder and ADHD. Sugar has no effect on him whatsoever. In fact, the pediatrician told me to give him a coke in the mornings before school because it has the opposite effect on him. That being said, my child is not your child. You know what affects her. My other son, can't have a cookie within 3 hours of bedtime or he is a complete maniac!!! This is a power struggle issue.

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Je§§!¢aWe§§!¢a

answers from Hartford on

You know your children best. It can be:

High fructose corn syrup
Red 40 (worst in severity of the food dyes)
Blue (2nd in severity)
Yellow
Green
Refined Sugar

For some children, they have gastric issues in addition to being sensitive to artificial food dyes and HFCS. My autistic daughter has lactose intolerance, so before we knew she has ASD or lactose intolerance, her symptoms were much, much worse. She never felt good. She would go back and forth between constipation and diarrhea. When we took her off of dairy she felt so much better and knew the difference between good digestive and sick digestive system.

Then since we had success eliminating dairy, we tried other culprits: gluten, HFCS, food coloring, refined sugar, natural sugars. We saw no changes with gluten or natural sugars. Now, I can tell when she (and my eldest daughter that has ADHD and ODD) has anything she shouldn't when I don't know about it. She feels sick, nauseated, emotionally upset and disturbed, has anger issues, runs the gamut of the worst severe autistic symptoms and behaviors... they're some pretty bad triggers.

YOU KNOW when your children feel best and behave the best. Don't let what they say bother you. They're not as educated as you are, and right now they feel that by rejecting the less healthy food items, you're somehow criticizing them. After all, all of those things were perfectly fine for their own children and for the cousins and "everyone else." If you stick up your nose at that stuff, you're rejecting and criticizing how THEY parented and are parenting the cousins right to their faces, don't you know!

Even though you're not.

So. If there's an event where there will be popsicles or ice cream or cake, be the one to provide it. That way you can control it by making it yourself with alternative ingredients that are safe for your children and you don't have to point out to the family the differences. There are even special bakeries that cater to people with special needs diets. If you buy from vegan bakeries, NONE OF THAT CRAP will be in the baked goods. IF you buy from vegan chocolate shops, none of that crap will be in the chocolates. You just have to know where to look. And luckily, everyone can eat those delicious treats from the vegan shops. Just don't tell the extended families.

Let them hiss all they want. If there's a party or gathering where you can't provide the treats then you can still bring an alternative just for your own children so that your children don't miss out and can have something delicious while everyone else has a treat too.

Yes, I've had many years of practice handling this sort of thing. I got my start having to deal with in-laws who don't understand my own restricted diet due to some severe food allergies (nuts, oranges, etc).

4 moms found this helpful

Wild Woman

answers from Reston on

Sorry - but sugar isn't the problem...it's YOU and it's NOT the sugar...it's the OTHER stuff...your son isn't a mess because of a piece of cake...he's a mess because his body doesn't know how to process the chemicals like:

Red-dye #2 or #3...
Blue-dye
Orange dye #40

they are synthetic and some bodies do not process them well.

I too would give you the "stink eye" if you refused to let your children participate in fun and games...they don't need to EAT THE CANDY but they can participate...

Your marriage sounds like it needs some communication skills as well...your husband is ONLY SOMEWHAT on the same page with you? Sorry - but he's either on the same page with you or the discussion needs to be continued until you BOTH agree on a position....

My son has ADD and it all depends upon what he eats. I don't have him on any stimulants like many moms....and since your kids know that you do NOT like sugar - they act off YOU.

Have you had your children diagnosed on the spectrum or is this just your labeling of them? If no diagnosis? Get one. If you haven't - this is where the Munchhausen-By-Proxy comes in to play...

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Jamie M.

answers from Harrisburg on

I just want to say sorry about some of the ignorant responses on here. Some people need therapy. I have an ADHD child and totaly see where you are coming from. Is there anyway you can leave the children with them for a day or two after they sugar them up?

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ReverendRuby

answers from Menasha on

Think Aretha Franklin it's called R -- E --S-- P-- E -- C --T.
They do not have to agree with you but you are the Mom and they need to respect you and your decisions. I think you need to have a sit down with them and explain that when they defy your way of raising your children they are disrespecting you. Thye are also setting you up for kids who will start to disrespect you and your ideas because they have be taught that Mommy is wrong.

What gets me about this kind of behavior is that if you told them the child had a peanut allergy and would stop breathing if they got any peanuts they would stop feeding them peanuts. But when you decide to research diets for special needs kids and then use those diets people refuse to listen. Yep, been there done that.

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Marda P.

answers from Portland on

Sounds to me that you're in a power struggle with your inlaws. It's more about control than it is about sugar. I suggest that your kids are reacting more to the intense emotions surrounding sugar than to the sugar it's self.

I urge you to find a way to be more relaxed and less confrontational. Find a way to compromise and to let go of your anger. You and your MIL don't agree about the sugar. There has been no scientific studies that show either of you are correct.

I suggest that your husband is being more reasonable about this situation. Follow his lead. Back off and let your children have occasional treats. Being so adamant is not helping you or your children. You may see them as better behaved but you're wound tight with anger. How does that help?

I have an ASD grandson and so sympathize with the out of control behavior. He does not get worse after eating sugar. He has his episodes caused by a variety of things. An angry atmosphere always sets him off. I suggest that sugar is the least of your problems.

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Angela S.

answers from Boca Raton on

I honestly think it's something most people don't "get" unless they have lived it themselves.

Today's grandparents do not understand that the world, and our food supply, has changed drastically since we were kids.

If I hadn't seen my own kid do dramatically better with a drastic dietary change (and I mean HARD-CORE) I'd probably feel the way your in-laws do.

I guess I would try to cut them some slack and chalk it up to lack of knowledge (I wish they could be more sensitive and work with you more). And until I could heal my child's gut I'd just do my best to limit activities with them which involve lots of candy/cake/sugar.

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B

answers from Chesapeake on

Whether the kids can take sugar or not, I'd have issues with the folks equating love and (sugary) food all the time.
You are NOT going to be able to educate them about this.
They will not believe anything you have to show them.
You are not a counselor and they need therapy, but they don't see anything wrong with their point of view and so they will pick pick pick at YOU to try to force a change in YOUR beliefs.
You are going to have to distance yourself from the sugar pushing folks a bit if you want any control over this.

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Angeles T.

answers from Astoria on

I have a godson with Aspbergers and his mom chose to not medicate, but work with his diet. I know to some moms, Jenny McCarthy is controversial, but her book on her son Evan, was an eyeopener for my friend and the help she was able to bring him. Its "LOUDER THAN WORDS". Jenny explains it very clearly and very logically. Most autism children, have an issue with their gut and processing food. Sugar, is a HUGE no-no. As is dairy and gluten. Jenny's ex husband did not believe there was anything wrong with their son and would feed him whatever. Jenny would get him back a mess. Autism kids cannot process the above mentioned foods and it turns to yeast in their bellies. This yeast is what causes, what Jenny called the "Tazmanian Devil" in her son. It would take about 2-3 days for the yeast to pass with her clean diet. In the interim, she'd have an extremely hyper, full blown autism symptomed child on her hands. My girlfriend had the same problem with her MIL, unfortunately, that had to get ugly for her MIL to understand. She also knew food was key and made sure my godson's meals were clean. Nothing dairy, nothing process or refined, no gluten!! We tested it and it was true. One week eating like a regular child and one week eating with a clean diet and the difference was night and day!!! My godson was more responsive to his therapies, more alert, spoke more, showed patience...everything! On regular food he lost focus, he didn't speak as much, there would be outbursts etc. In autism, the head and the gut are very much connected. Perhaps you should give your MIL Jenny's Book and write a note expressing your feelings and just educate her on Autism. Most old school parents really don't get it. They are ignorant to the reality of the disorder. Like my mom, she had diabetis and never got it....you know? Good Luck.

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TF Plano/Allen

answers from Plano on

WOW,
FIRST... you and your husband should be on the same page.

2nd.. Why on earth would you deny your children the fun, laughter and challenge of a pinata? All you have to do if you don't want them to have sugar is to teach them to say no, thank you. What will happen if you are not there to get them out of sight and put them in a bubble until the fun is over? You bet if you keep that up they will rebel.

3rd. It sounds like you are wound a little tight. Relax...do you not think your children pick up on your emotions, etc. Children are fantastic about being intuitive.

Let them be children, have fun. They can learn about limiting sugar. You willl not be able to be there controlling them 24/7. YOUR behavior about storming out because of the pinata was overboard.

Look within yourself and figure out why you need so much control over your children. I agree with your relatives.. "SERIOUSLY, she wont even let them do this". Someone has some major control issues.

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Veronica P.

answers from Columbus on

For us, we are doing an gluten, casein free diet and limiting sugar, and it makes a big difference for our daughter who has mild add. There are tons of articles on line that if you google for 10 minutes or ask your ped, you'll have tons of ammunition. But I think the lack of respect (joking or not) from your MIL and the partial support from your husband is a bigger problem, no matter what the issue is. Good luck.

ETA: I somehow missed the part about the pinata -- I wanted to add that even though my daughter can't have all the treats at parties, I just take things she can -- she avoids gluten primarily, so this weekend, I gave her gluten free cookies to eat while the others had cake. Or if it was a pinata, I would let her participate, but then give her little trinkety toys she could enjoy or treats she likes in place of the candy. I don't think you need to completely isolate your child (and I hate pinatas, too, by the way and hated diving for candy as a kid -- I was too embarrassed by how greedy it made you seem to do it). A kid with allergies or restrictions already feels isolated -- I do my best to make sure she's still included as much as possible.

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Patricia G.

answers from San Antonio on

Your hubby is the issue. If he is on board, he will get his parents on board. As long as he is only "somewhat", you're not going to get anywhere.

But somewhere there has to be a balance. I don't know if there is some way to balance the sugar intake. I know if you have diabetes, that you need to eat protein/fat WITH sugar to keep the insulin from spiking. Perhaps that kind of approach might keep the sugar blast from affecting the kiddos so hard?

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Karen M.

answers from Overland Park on

I agree with Jo- this isn't an autism thing. It sounds you need to get on the same page with your husband. There's nothing wrong with not wanting your kids to eat sugar, but if he is sneaking it as well, then your kids are receiving mixed messages and that isn't fair to them.

But I have to say... you should have let them do the pinata. I think that is more of a control issue and you are opening the door to bigger issues. What happens when they are in school and treats show up for a birthday? When they go to a friends house?

Start teaching your kids now that sugar is not good for them and they need to be careful about how much of it they eat. Teach them how to gracefully say no when they are presented with an opportunity to eat it. They are not too young to start learning to advocate for themselves.

In the meantime, start picking your battles. Being so mad that you have to take your kids and go home isn't helping anyone here- it's just make you look like an uptight mom and it only gives your in-laws more ammunition against you. Don't fight that battle.

Good luck. You are in a tough situation.

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luckymama

answers from Fargo on

My 13 year old is Asperger and we are on a Gluten Free/Casein Free diet vs medication. We've seen huge differences in her behavior . . .but she eats way to much sugar in my opinion and no effect on her behavior (I wish it did so I'd have reason to try to restict :).

My 7 year old is very sensitive to sugar and I limit but won't say she's on a no sugar diet. She gets very hyper and just not herself and doesn't know what to do with herself, so we restrict as much as possible. And it doesn't feel good to her so she's even restricting herself.

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Jo W.

answers from Saint Louis on

It may be an issue with your children but it isn't an Autism spectrum issue at all. My son can eat all the sugar he wants and it doesn't change him at all.

Sugar in itself shouldn't be an issue even for your kids, it just isn't something that makes a difference. They did studies and found the only reason people make the connection of sugar and hyper is you tend to get more sugary foods at parties, like birthday parties but it is actually the stimulation of all the people and the change in structure that causes the kids to lose it, not the sugar.

The other thing you may want to look at is what other than the sugar is in the foods that set your kids off. My oldest reacts to a specific red dye. Looking back it was kind of funny but at the time not even. He could drink this Kool Aid drink an you could count down to 20 and watch him spin out of control. Even that only lasted a couple hours till the dye left his system.

Sorry if I can't back you up with the sugar. Thing is even if it was the sugar it wouldn't make them out of control for days. I feel like I would be doing you a disservice to say you are right and you continue to not find the real culprit. More than likely it was the party and you pulled them out of their comfort zone. I know nothing throws my son off more than changing his schedule and that does take days to get back.

Oh, my younger son is 13 and has PDD if you want a point of reference.

I just want to add because this has been bothering me, these kids react off of our emotions a lot more than a normal child. If you are expecting bad behavior, you will get bad behavior regardless of what you feed them. I can't even imagine why you wouldn't let them take part in hitting the pinata. It can't be the candy because all you had to do is say no, you cannot eat it. Depriving them of the fun of whacking at it with their family, tearing out of there, there is a very good chance your behavior and not sugar is what is causing these problems.

Here is the problem with Jenny McCarthy what her son has is not Autism but Autistic symptoms. Yes, diet works with that though it is more about Gluten and milk rather than sugar. It is the same thing as diet with ADHD, if it works then you didn't have ADHD.

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