Autism and Eating Disorders: A Problematic Connection


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In a previous article, I discussed how girls with undiagnosed Asperger’s Syndrome (AS) often manifest eating disorders. Researchers at the Maudsley Hospital in London compared and contrasted autism and anorexia for several years and found that while patients with autism struggle to connect with people in the outside world and anorexics are obsessed with other people’s perceptions of them, there are still some compelling similarities between the two conditions. 

For example, both anorexics and individuals with autism exhibit obsessive/compulsive behavior and rigid thinking. Tic disorders are fairly common among individuals in both populations and both have trouble dealing with change. Additionally, researchers found that some 20 percent of anorexic patients unknowingly suffered from Asperger’s Syndrome.

Dr. Tony Atwood, autism and AS expert, reports that early ritualistic behavior around food can be the precursor to eating disorders. Problematically, some girls with Asperger’s begin to treat their weight as their special interest, becoming obsessed by the science of calories as they pore over charts and tables.

Certainly, societal pressure for young women to be ultra thin is unhelpful and those with Asperger’s tend to be perfectionists, feeding into these issues of body image. 

The world of dance attracts this profile of young women and as a college dance major, I can attest that eating disorders were at an epidemic level in my department, where one could never be considered too thin.

Of course, anorexia is not exclusive to girls. For years, my son seemed to regard eating as a necessary evil and I worried that he was anorexic. It turned out that he had severe undiagnosed food allergies and subsequent gastrointestinal problems. Once changes in his diet were made, he began to enjoy food for the first time and his extreme emotional outbursts disappeared. Clearly, his aversion to food and his meltdowns had been expressions of suffering. 

Parents of young children with autism know well that eating issues arise early on since food poses such intense sensory challenges. Frequently, the child selects food for texture alone and it must be arranged in a particular way in order for them to consider it edible. Children with autism are frequently beyond picky in their eating habits. 

In trying to introduce a new food, it’s best to take it very slowly. Say you want to add carrots to your child’s diet. First, simply have carrots in the same room with your child, perhaps taking them out and washing them while he or she is in the kitchen. After they are comfortable with that, have them help you wash or otherwise handle them. Next, have some on the table. Finally, put a very small piece on their plate amongst all their other favorite foods. 

Keep doing that until they try it. Patience is key.

Eating disorders within the autism population can manifest at any time and it’s important to realize that children and adults on the spectrum are not immune to this problematic issue.

64 Responses to Autism and Eating Disorders: A Problematic Connection

  1. Jennifer says:

    My son’s pediatrician told me ‘he doesn’t do the grocery shopping’ when I told him of my son’s food issues. Sadly, our insurance no longer covers pediatric neurology. No one seems to be able to help me. This article is a start, though.

  2. Holly B says:

    After 13 years of helping thousands of families get their ASD kids on the GFCFSF diet, I can tell you that virtually all kids who are picky eaters are so because of WHAT they are eating. Carbohydrate overload causes picking eating, which causes eating disorders. Removing gluten, casein and soy is the first step but reducing sugar and carbs is key to a healthy diet and a broadened range of foods with ASD kids. http://www.tacanow.org/family-resources/going-gfcfsf-in-10-weeks/ explains about the pitfalls of diet and how to help this relatively easy to solve problem.

  3. Susan says:

    I agree that sugar and starch need to be reduced if not eliminated. As I’ve stated in archived articles, my recommendation is to have your child get a food allergy test, and let that information and a medical professional guide you in creating new eating habits for your child. My son turned out to be allergic to yeast, soy, milk, peanut, gluten, wheat amongst many other things. He’s on a Specific Carbohydrate Diet, (SCD) which is stricter than GFCF. Changing diet is life changing, even life saving in his case.

    Many doctors “don’t do grocery shopping,” but naturopathic and DAN (Defeat Autism Now) certified doctors certainly honor diet as the huge force that it is, and can help with vitamins and supplements to make sure your child has everything he or she needs. While I had to pay for the doctor visit and allergy test out of pocket, it set a new course for life.

    There are great websites such as Comfy Belly and Elana’s Pantry to give you recipes and support. Recipes for the SCD by Raman Prasad is an excellent cookbook. He also runs scdrecipe.com

    Good luck!

    SM

  4. Debbie K. says:

    Omg, Susan! I just wrote a blog entry about this exact same issue: http://autismlifeonthespectrum.blogspot.com/. And it’s not the first one. My son is 5’2″ tall and weighs just 89 pounds. To me he looks skeletal, but all the doctors and the BMI charts say he’s a healthy weight. I get so tired of people telling me I should just “make him eat.” I do see the similarities between Autism eating issues and anorexia.

    @Jennifer, what a horribly insensitive (and ignorant!) thing for your pediatrician to say to you! The last thing children with autism want to do is go to the grocery store with you! Too many strange sounds and smells coming at them. Too much sensory input! That’s a recipe for a meltdown. I’ve learned to leave my son at home. He eats what he eats. I’m just happy that he eats!

  5. Rachael says:

    My son is 3 y/o and will only drink milk with baby food in it. He sucks on tostitos but spits them out. He’s had genetic testing done. Dax has duplication of chromosome 16p11.2 it’s linked to autism. My son attends a child development school, they also can’t get him to eat anything. He is non-verbal as well. I need help!!

  6. nicola foot says:

    i have a step son who’s 15years old who takes hours to eat a meal he has a very low bmi 17.5 he is on build up drinks from gp he struggles at school educational wise and has very little communication skills no friends a bit of a loaner very little sense of humour good with adults and small children but not with peers ….he has never been diognosed with anything they all just say thats him hes just slow….he has had a bad past with mother emotionally and physically but hes always been like this and i am desperate for advice hes been seen by cahms any advice welcome as to whats wrong and what we can do??

  7. Susan says:

    It would be good if you could get him to a neurologist to be evaluated for autism. If nothing else, it would be a rule out.
    Another thing would be a food allergy test. I thought my son was anorexic, but it turned out he was allergic to just about everything he’d been eating all his life. Getting him on the right diet was life changing for him. After that, I would suggest a psychologist. Sounds like he should have an IEP (Individual education plan) at school to accommodate his needs.

    Good luck to you…

  8. Holly says:

    I have a 6 year old who has just all of the sudden lost 5 lbs. He just grew an inch though?! I am taking him off of Adderall he has been on for two months. He looks very boney. I can’t get him to eat as much as he use to eat as a toddler on good days. Now he doesn’t want to eat hot dog, steak, chicken nuggets and the menu is getting smaller. Taking him to his doctor soon. Doesn’t like pasta or cereal. Help. Getting scared! He has PDD-nos.

  9. Debbie K. says:

    Holly, my son also has PDD-NOS. Part of it is super sensitive tastebuds and things tasting “weird” to him sometimes. I would absolutely talk to his doctor before removing him from his meds. It can be dangerous. You do need to express your concerns and get some answers, though. My 11 year old has recently started eating some new things. Hang in there! It will get better!

  10. Susan says:

    He may have undiagnosed food allergies. I’d get him screened for that.

  11. Barbara says:

    My son just turned 11 and is 4 ft tall and weighs 60 lbs. He eats only food with pasta, nothing solid or hard. I add a varity of things to his milk so he gets the nutrients and vitamins he needs. He has severe allergies to fruit, some veggies and latex. He also has Pica, he eats wood, paper, plastic, rocks, dirt, anything but food. lol It’s a challenge but there has been a large inprovement in behaviors. He is in a controlled environment, even goes to school via the computer. All things that spark melt downs have been removed and at this point, he never goes out to stores or places that trigger melt downs. Hard, but he is worth it.

  12. Susan says:

    Have you had him tested for allergies by a doctor with a blood test, or have you deduced these allergies through experience? If you haven’t gotten an Alcat food allergy screening I highly recommend it. My son almost died from undiagnosed allergies. About the only thing he ate was pasta too, as it turns out he was allergic to it among every other thing he’d been eating his entire life.

  13. Julie says:

    My son is 6 years old and autistic, he has never bit or chewed any food, his diet consists of 3 different baby foods (lump free), and forular bottles, he loves to lick chrips and chips as likes salt however will not eat them. He goes to a mainstream school and is doing well. Does anyone else have any similar issues or ideas to help him eat?

  14. Susan Moffitt says:

    My son’s opposite, won’t eat anything smooth. Everything has to crunch. I’m wondering if maybe you could try a light savory pastry with a smooth filling, so that he could bite it to get to the reward, so to speak. Or a very light crepe rolled with filling, just to start introducing another texture. Creamy soup with salty croutons, or crushed saltines may work. Smoothies are a good way of getting nourishment to him, and helping him think that drinks are smooth but food doesn’t always have to be. I’m thinking focus on dishes with sauces that will entice him and very gradually increase the amount of solids in the sauce.

  15. Julie Wright says:

    Thanks for the advice Susan, we have tried everything, I love cooking and have spent many hours pureeing food and my son will only eat 4 varieties of baby food, sometimes I think I focus too much on the food rather than what is going through his little head.

  16. Priam B. says:

    When my baby was a baby, he started to lose weight because he would not nurse, he was changed over to a bottle. At 15 months he just stopped eating all together. He is now 8 years old and still a major picky eater, tends to stick with crunchy, salty, sweet- nothing else. He determines what goes in his mouth and if it’s two different crunchy items, one falls to the side. My family doesn’t understand and I have really no support system at all. My little boy is on the ASD, under PDD-NOS, ADHD, OCD with high sensory.
    I have battled with the not eating for so long that I too became a closet eater there for awhile and had to seek out counseling.

    I think it’s horrible that when you have a child on ASD, under the umbrella that no one wants to really take the time to read all the information concerning ASD and picky eating- they just assume it is the parents fault and are more interested in casting blame then helping with emotional support.

    Everyone has a “cure” everyone has a hand in the pot with what autism is all about- but no one really looks at the child who is suffering in the meantime.

    Autism is a neurological disorder either effecting the “left” or “right” side of the brain- there is no cure and no two children are alike when they have autism on the spectrum. No amount of vitamins or diet removing anything is going to help with autism- there is no pill to cure autism and no amount of OT is going to make autism go away. Everyone has a hand in the pot of what autism is, instead of finding ways to help support any children as they are within the spectrum. ALL children who has ASD should never be allowed not to have services because of insurance. Every child should be allowed to have an education as they deem to have, how they need to learn.
    It does not matter that a child is a picky eater- if given at their own pace instead of force or trying everything under the sun as if they were human Ginny pigs, maybe adaption into their world isn’t such a bad thing.

    Everyone has an opinion on what to do, what works best and what treatments, vitamins, diets, schools, therapist and I am not saying DO NOT TRY but sometimes I think the medical professions forget that just because something works for one child under ASD, does not mean that it is going to work for ALL children under ASD.

    I have followed so much advice that it makes my head spin- trying to get my son to eat. I feel for each of you parents because we are not alone in our journey.

  17. Susan says:

    I feel like a one note samba here, but make sure your child doesn’t have any undetected food allergies. My son almost died from a lifetime of eating food I was unaware he was allergic to. Once we cleared all that away he started to thrive. He still only eats crunchy, salty food, loathes creamy textures and sauces, but I’ve found food he actually loves that loves him back. He said that he “used to eat food because he had to, now he eats because he wants to…”

    Thanks for your thoughtful commentary. Good luck….

  18. Susan says:

    Julie, maybe your child will increase his food intake as he gets older. He sounds healthy, so that’s what counts.

  19. Gen says:

    I am now 37 and was finally correctly diagnosed with Aspergers when I was 34, even though I have had it my whole life. Much of it because I am female. I have struggled with sensory issues all of my life too. Puberty was awful and that is when the eating disorder started. Even eating disorder programs were difficult for me because no one understood me and I couldn’t really connect with the others. If I gain even a few pounds, my brain seems to “sense” it as if I had gained 20 and I feel like I want to crawl out of my skin. It is such an awful feeling. Clothes doesn’t fit right, seam in clothing seem to catch where they used to not. I was always told to “trust my body” in these programs, but how can you trust your body when what you feel is not what your brain is telling you. When I had kids, I hoped for boys so they wouldn’t go through what I went through and am still going through. My oldest of two sons, now 11 is has NF autism, the regressive type. He also has sensory integration dysfunction.

  20. Gen says:

    meant, HF autism.

  21. Carolyn Vonner says:

    I have a 44 year old sister that eats with her mouth open and chews her food
    like a horse. How can I break this habit? We have tried to make her aware of the eating habit and she says”So What and I can’t help it”. My father never took her out to eat often an never attempted to correct this problem. Any suggestions would be helpful.
    Thank You

  22. norma says:

    We are the opposite my grandson overeats he can’t stop but we have treated him similar to other children his age he is very picky he enjoys texture but also enjoys certain grains like cottage cheese .corn tortillas corn chips white rice sweet potatoes watermelon apple banana but dips in milk he loves the ravioli baby meals which are great they carry veggie in them and they have the right texture he enjoys he also enjoys some of the toddler meals our issue is how do we control his need to consistently have to eat yes he is a husky boy but hes just built like a football player he was born with muscle that’s that but we are concerned about this eating habbit we have tried mushing the veggies into his meals but he will not eat it because its mixed he does not like mix he want everything separate so im going to try the slow introduction oh and we take him shopping it was hard at first lots of screams and floor time but we kept doing the introduction and now he walks next to us picks some foods he likes and we consistently let him wonder on his own to explore of couse were never far its worked great ours is mostly home now he is always in the refrigerator and he so smart he figured the locks out any help would be greatly appreciated

  23. norma says:

    Oh sorry hes 4 years old and is non verbal he goes to the mall and restaurant s as well its a payience game but in time its with every bit

  24. SHARMIN says:

    HI,
    I have two boys with Autism.
    One of them is 6 yrs old. He never eat any solid food in his life only milk with bottle.
    I tried to feed him solid food but nothing works.

    Please any one help me to suggest.

  25. Susan says:

    Six and only drinks milk from a bottle? If this is for real you need to see a doctor and a nutritionist.

  26. Nicke says:

    I have the same issues with my daughter. She is 7, and extremely picky. She doesn’t like red meat. Cheese is out as well as any sauce besides spaghetti. She loves fruit. The only vegetables that I can get her to eat are collard greens or kale. It is a chore trying to get her to eat. I just focus on her getting fruits and vegetables in daily. If you have ruled out food allergies, just stick with what your child will eat, and maybe try a vitamin supplement as well.

  27. Rachel says:

    My granddaughter who is 18 just went to college. She was diagonosed with AS in the 7th grade. Before she went to college she has lost 25 lbs. On Sunday she was sent home because she has lost more weight ,all cital signs are low. The college felt she was unhealthy. Do you think going to college caused anxiety and lose of appetite. I need help.

  28. Susan Moffitt says:

    Going away to college is stressful for everybody, but it’s even more so for Aspies. Did the college have a special program for students with Asperger’s? Many recognize the need for it, and assign mentors and create a space for college kids on the spectrum to be with others who understand them. She may have undiagnosed food allergies and/or anorexia. Maybe she needs to go to school closer to home and have more supports in place. Good luck…

  29. Melinda says:

    My son is 4 and was diagnosed with Autism at the age of 2. We have made tremendous progress with him on every level except eating textured food. We puree all his food. He is on the Casein/Gluten free diet so this makes matters a little more challenging. I did read online today that a lot of children with Autism have a Zinc deficiency that could cause sensory issues with food along with taste. So, I am going to try this today and see how it goes. We brush him and do joint compressions for his sensory issues. He eats all fresh fruits and vegetables along with organic beef and chicken that is pureed. He eats very healthy but I would love it if he could chew his food and enjoy it.

  30. Susan says:

    Sounds like you’re doing a great job with him. My 16 year old is the opposite – hates anything creamy and smooth, and will only eat vegetables and fruits that crunch. Wish I could say he’s changed since he was four, but he hasn’t. I have to just keep going with what works.

  31. Twila says:

    I felt so lost before stumbling onto this site. My little girl is 3 1/2 and was diagnosed at 2 1/2. She started off life eating fine. I even pure’ed all of her fruits and veggies. She graduated to Gerber graduates and then to table food. She was still drinking milk because I breast fed until she was 2. After that she was drinking whole milk from a bottle and it had to be warm and chocolate. As time went on she started refusing foods little by little until she ate nothing. This month makes a whole year that she has not eaten. She drinks medical pediasure mixed with whole milk topped off with oval tine 3 times a day. She will not drink it from a cup but she will drink water from a cup. We just saw an ABA therapist today and she suggest taking the bottle away during one meal and offering her food. If she doesn’t eat it then she will be hungry until the next meal. The next meal I can give her the bottle. She tells me to think long term because if I let her stay on the bottle she will be this way 5 years from now and that is socially unacceptable. Our kids are already socially challenged why would I want to add that to her plate? I really didn’t think about it that far ahead. I am just trying to help her get through in the present. She is doing well in her speech and early intervention preschool, I did not want to stress her out even more by tampering with her only food source. If I get her allergy tested that is fine but how can I get her to actually eat something that is good for her? Oh, did I mention that she goes to food therapy as well. They are just using a method of re-introducing the food back to her through play. My mind is telling me yes but my heart is telling me no to this taking away the milk slowly idea. They think so differently than we do and to get them to try to think or feel like us is not right.

    CONFUSED!!

  32. Natalie says:

    My son is 5&1/2 and was diagnosed with PDD-NOS two years ago. He was eating lots of food of all varieties . Then around age two he stopped eating in daycare . Since then it’s been an extreme battle getting him to try anything. He went trough periods where he would eat the same meal ( eg. Chicken strips diped in ketchup ) at all meals for three weeks straight. We are getting a little more variety in him now. Absolutely no veg or fruit except an occasional banana.
    He used to gag & vomit on all sorts of food. Now he keeps taking a deep breath in from time to time. I’m going to take this up with his paediatrician. I am worried he may have a food allergy or its just a tic.
    My son gets vitamins because I’ve just stopped trying to introduce veg. He sees them all the time at our house, so maybe one day he will just try them.

  33. Susan Moffitt says:

    It’s good you’re having this checked out. Autism kids have lots of sensitivities and often need supplements to help them. You may consider a naturopathic nutritionist. Glad you’re going to test for food allergies.

  34. Natalie says:

    I’ll ask my sons doctor to refer us to a naturopathic nutritionist . Good idea.

  35. Samantha says:

    I am weeping as I write this. My 11 year old son only eats peanut butter and nutella sandwiches on a certain wheat bread. He’ll eat ice cream and certain sweets too (of course). As a baby on baby food, he would only eat one kind of baby food — squash. Other adults look at us with suspicion and scorn. Many tell us that if we just starve him, he’ll eventually eat at some point and won’t allow himself to die. They just don’t understand! They look at him in our presence with pity (as if to pity him to have such incompetent parents who can’t even get him to try or eat typical “junk” foods other kids crave.

    He has anxiety problems and suffers meltdowns from certain triggers, which I have identified and avoid (although sometimes other people introduce the triggering environment if I’m not around, but it doesn’t happen often). I never considered that he could have Asperger’s Syndrome. But now that I look at the research, he has a significant number of symptoms of AS. He goes to a small private school and does well there. He only has one “close” friend and is very attached to routine and sameness of environment and us (his parents).

    I can’t stop weeping, but it’s with relief! A burden has been lifted off of my heart and soul. I know we have a long road ahead of us, but at least there’s a road — a starting point! Thank you so much. Bless you and all those who commented. Thank you.

  36. Susan says:

    I found Tony Attwood to be a beacon of light and hope. If he ever is in your area, try to see him in person. He’s a wonderful speaker. http://www.tonyattwood.com.au/

    From experience, I suggest cutting down on refined sugar as much as possible. There is a supplement called “Zen” that is good for anxiety. It consists of Gaba and L-Theanine, the calming agent in green tea. It’s non addictive, no side effects and makes you feel calm and clear. I get it at Super Supplements for $20 a bottle.

    I hope to that you’ll get your son tested for food allergies. Some of these food eccentricities our kids experience are rooted in physiological aversions. The allergy screening is an Alcat blood test, and I recommend you ask the doctor to apply Emla first. It’s a cream that totally numbs the skin so your child can’t even feel the needle.

    There’s a lot of information and support available for the asking. You’ve already been on the journey, now you actually have a map…

  37. Jenny says:

    Dear Susan,
    My name is Jenny. I am diagnosed anorexic -binge/purge subtype. I am 20 years old now, I was diagnosed at about 16. Though I have been obsessed with how people interpreted me for a very long time. Before the eating disorder I was obsessed with clothing, thinking certain styles or clothing/jewelry items were ‘cursed’ or would cause negative energies. That was when I was a child.
    I was always different, I was kicked out of private school because they couldn’t teach me to read, I never began reading until 3rd grade, though now I love reading. I never had friends, I just couldn’t connect. They said I had ADHD, but I never told them that why I bit myself and kicked things was because of the ticking clock or the sound of people erasing on their paper and writing. I cannot stand noise. As a kid I word a winter cap all year around with flap ears to cover up from the noise. Nobody though anything more than that I was odd. My mom got frustrated at my resistance to wear anything but certain clothing items and always dress like it was winter, the clothes I felt, “protected” me.

    The eating disorder at first was just looked at as my next big “obsession” as I’d been notorious for being engrossed and my universe revolving around one thing. As a child it was dogs, specifically black Labradors, then music. I learned and studied these topics day in and out. I drew dogs all over my school work, never paying attention really unless we were reading ol’ yeller. So my family wrote it off as a diet obsession no I’d get hungry and snap out of it. I’ve been inpatient twice for it.
    In a few lower levels of intensive treatment.. Had many doctors and therapists. But I feel trapped in this. I am obsessed and know calories and carbs and the digestive system back to front. I just feel incapable of letting it go, I think I’ll have nothing without it. And I’ll get fat, because I don’t know how people will respond and I feel better safe that sorry. (Better thin than fat.)

    About two years ago a therapist mentioned this, Asbergers. My mom told her about my excessive testing as a kid, where I was labeled ADHD and Central Processing Disorder… But the more I read on asbergers, the more hopeful I feel.

    I would like help, but I don’t know what to do. I picture in my mind how I would love to explain all this to a doctor or psychiatrist, I’ve had plenty of them. I am terrified of them laughing at me, or telling me that I am foolish for thinking this. I had one doctor (whom I’d only seen three times!) who when I mentioned this to, did laugh and told me I had PTSD.

    If you do not respond that is okay, but if you decide to, I’d just like to know what you suggest. Thanks.

  38. shannon shipp says:

    My daughter is 6yrs old and diagnosed with aspergers. She has many eating issues. None really have anything to do with texture, more to do with the smell or packaging or just the look of something. She can only drink what she considers blue milk, this is the 2% from kroger or walmart. If this label were to change such as adding a picture of a cookie to the label or any other change, it would be considered non drinkable to her.Gagging and throwing up could accompany that. Same with bread being in a bag, I could not bake bread and cut a piece for her, it has to be bread from the store in a store bag. Many things are this way for her. It is definitely a mental barrier for her. Gagging and throwing up at the mere sight of a food that is not something she would eat has happened plenty of times. At school she is in a general ed class at lunch she sits only near cold lunchers, but has been in sight of someone dipping their macaroni and she then threw up on the table, It was to gross for her. We have tried many therapies with her O.T. and none have proven successful. I am not sure where to go with this, but I do worry about her long term health. She has a very limited food menu. There are no beans, rice, noodles, veggies, cheese, potatoes, eggs, meat. It really is limited to bread type items, but very select with even t those. I do give her vitamins, but still I feel like it is not enough. And there is no making her eat something, before it would even get near her mouth she would continuously gag and most likely throw up. Any ideas welcome :)

  39. Susan Moffitt says:

    My son was very similar, addicted to carbs and wouldn’t eat a sandwich cut in half instead of diagonally, etc. Have you had her tested for food allergies?? It’s an Alcat blood test that screens for an array of foods.
    My poor kid was 13 and almost died before we had a specialist test for food allergies. He was allergic to almost everything he’d been eating his entire life. Once he went on a special diet, he began to have a hearty appetite and enjoy eating for the first time ever. Please do this, at least as a rule out. I would take her to a nutritionist to make sure she is getting the specific vitamins and minerals her body needs. The throwing up bit is bothersome, but I don’t feel qualified to address that. Good luck!

  40. shannon shipp says:

    Thanks for the advice Susan Moffitt, I actually have had some food allergy testing done, no luck there as well. I am not sure if the test was called the Alcat blood test. I will find that out. Thanks again :)

  41. Susan Moffitt says:

    Well, at least you know! Maybe your daughter could eat in a more private space so she doesn’t have to encounter all those gagging sensations. My son was overwhelmed by the cafeteria and ate with a small group in a classroom.
    Maybe other kids would benefit from a quieter, more controlled lunch scene as well and a teacher or aide could be there w/them and you could have some control over what she is exposed to. Just a thought…

  42. shannon shipp says:

    Susan Moffit You are right about the lunchroom thing, I may need to insist that she eat elsewhere. She herself wants to eat with all of her peers, so I may just have to put my foot down and say she has to. I have told her if she eats in the lunchroom, she needs to focus on her own lunch and not look at others lunch, as much as possible. I also include a “smell good” bottle attached to her lunchbox, she can just open it and smell what is inside when need be. Last year they had an older student bring her to the lunchroom about 10 min early so she could begin eating and get through a portion of lunch without the other students being there. Which worked well, now this year that was not available to her, because of some changes in recess time and lunch time. At home she definitely removes herself when eating is going on. If she happens to come in the room and depending on what it is we are eating, she will gag and run out. As a 3yr old she could smell what I was cooking as she was getting off the bus, she would throw herself down outside and once she was inside she would hide in her closet for a while. Craziness!! I can say that it is better than when she was 3, and I also know exactly what will set her off, and try to steer clear of those things.

  43. Susan Moffitt says:

    Hypersensivity to smell as a sensory processing disorder feature is pretty common, and this is an extreme case. Maybe you could research and/or contact someone about it from that perspective. If you could think of some way to make the more private lunch scenario more attractive to her, to provide incentive that would be good. (Include a favorite toy or item from home or something if she eats lunch more privately?) You can insist upon the earlier lunch time. Put it in her IEP as an accommodation.

  44. shannon shipp says:

    Really good idea to incorporate a favorite toy, she has many of those. That definitely is worth a try. Thanks for the advice, I really am willing to try anything :) And how is your son doing now?

  45. Pennie says:

    Wow, I can remember the days when my son was an extremely picky eater. He ate baby food until he was almost 3 (spaghetti). He then went on to hamburgers and pizza only until he was about 9. Now at 14, he eats a variety of things but sometimes still “texture conscious”. Veggies are still almost impossible…but fruit and yogurt are now a thumbs up! He has always been a very big eater but now his appetite is insatiable!!! He is literally never satisfied or full! Needless to say, he has gained a ridiculous amount of weight and I don’t quite know what to do. We have to lock the fridge and the pantry, but he manages to get some kind of food even if it is mayonnaise, syrup or salad dressing. It doesn’t matter to him, as long as it is food. I have heard that because autism is a neurological disorder, the “connectors” that specify hunger or fullness may not function properly. Anyone heard that? Anyway, looking now for a doctor that can give us some insight and help.

  46. Susan Moffitt says:

    There’s Prader-Willi Syndrome where you can’t stop eating. Perhaps there’s some vitamin and/or mineral deficiency he keeps trying to fill. Does he have any food allergies? I exhort people to test for that as a rule out if nothing else. Obviously you need some professional guidance. Generally naturopathic nutritionists are more attuned, I’ve found.

  47. Dear Susan,

    I am writing and looking for someone that might be able to help our family. Our oldest son just turned 17, has the diagnosis of Autism, ADHD, Anxiety,as well as has GERD and Esophagitis. We have done an allergy test and aware of some of his allergies. About two years, he started vomiting, sometimes it would every and then, now we notice it can be a minimum of once a day. He has undergone blood work, an upper GI, stomach ultrasound, and endoscopy. All have come back normal or showed us the conditions he has. Our fear is that he may have an eating disorder, which is big and wondered if you have any suggestions on how to handle this. We are concerned and hoping that someone might know how to approach. I hope you would email a response. Thanks.

  48. Rosie says:

    My son is 21, and up until a year ago, ate well. He ate pretty much what you put in front of him, now we have had to purée everything, and are down to baby foods. He has no more weight to lose, did medical testing to rule out any medical causes. At my wits end – not used to this extreme problem. I’ve been used to the “roller coaster” that is autism, but this one has me stumped!!! Any suggestions out there??? He is non-verbal, so no real answers from him.

  49. Linda says:

    Rosie, my son is nearly 18 and he used to have a good appetite and after being extremely picky as a youngster, was eating a pretty wide variety of foods. Now he will eat nothing that is not in liquid form and is very thin. I can’t take away the soups and smoothies and put food in front of him until he eats…because he won’t. He will turn into a skeleton. I understand your frustration. I’m looking for someone who is doing good work with young adults with autism and communication disorder who also have anorexic behaviors. I’m coming up empty. We live in the Seattle area.

  50. Carrie Meadows says:

    my son is 7 and the actual title of “autism” or “Asperger” has yet to be made but ive been dealing with his behavior & eating disorder since he was 2. his eating disorder include nothing nutritional in his diet, you ask him why he doesn’t want to try any real foods and he says back that “real foods make him throw up” you try to brib him to eat something and he automatically makes himself throw up. You try and get something new into his diet & he has a complete melt down. You sit down to eat at a restaurant and go to order your meal & he doesn’t eat ANYTHING & throws a fit if you don’t get him the dessert he wants, he does grasp the concept that he needs to eat better if he wants to grow up to be strong & healthy… I am at my wits end of trying to get him any help, countless doctors app have led to nothing, no doctor seems to think anythings wrong with him.. they all come back with the same conclusion that hes just “spoiled” and if I hold out givin him the lil bit of food he will eat then he’ll be forced to eat normal healthy foods, but that doesn’t work!! if someone can please give me any tips or and direction as to where I need to take him someone please feel free to email me with some helpful tips

  51. Susan Moffitt says:

    I would definitely start with a food allergy test. My son was much the same growing up and it turned out he was allergic to almost everything I was feeding him. It’s a blood test that profiles allergic reactions to 300 different food. He may be rejecting food that is actually toxic to his system, food as fundamental as wheat or milk or soy or yeast or nuts. Check it out…

  52. Lee says:

    We are having the opposite, my step daughter 17 has aspergers and will eat everything! and eats fast, always goes back for seconds and huge portions! she obsesses about food, always talking about it and states all the time that she would die if she had to miss a meal, always obsesses over the time for meals right when she awakens and checks the clock, anticipatin for 12:00 noon !(TIME for LUNCH)she also begs for food at school and is a pleaser(uses Manipulation) doing favors for teachers to get treats, will even bug teachers for their food items if she notices they have anything!
    Going out to eat can be embarrasing due to the amount of food she pleads to have, This has become a serious issue in our household with the other kids also… they notice too! she races to be the first in the kitchen and has no concept of the courtesy of making sure theres enough for everyone, She also has dental problems due to not taking care of her teeth, numerous cavities. I have tried to help her with these issues but when you try to communicate with her about anything she appears to 1) block you out and doesnt hear you and acts soo injured, like a dear in headlights when you bring things up to her and nothing has worked and i dont want to single her out from the others but i end up changing things with the other kids to i guess inadvertently manage her issues through them. this has been very tough to deal with in our household and she is manipulative between her dad and I ( he is oblivious most the time and easy for her to manipulate)LOL! The other kids have really been great about it all for the most part but beginning to resent her especially my 14 yr old daughter who she mimmicks everything she does to how she dresses to how she talks copies her likes and dislikes her speach to how she even eats (EVERYTHING!) wich my 14 yr old is just fed up and says why cant she be her own person and stop copying everything i do? I even had the doctor explain this to hopefully help and she explained that she could look at it as if she is copying her because she admires her and wants to be like her this didnt last long to subside her frustrations with her sister and just the tip of the iceburgh of all the issues but would love to hear from anyone with similar stories and any ideas that have helped their household come together more and has helped?? thanks, and God Bless!

  53. Susan says:

    Your child may have Prader-Willi syndrome:

    http://www.pwsausa.org/

  54. Aspie Chikk says:

    Some autistic people compulsively overeat while others exhibit extreme picky-ness or outright anorexia. Reasons for overeating may include: medications that increase appetite (i.e. – anti-psychotics, tricyclic antidepressants, mood stabilizers, first-generation antihistamines, etc); dysregulation of the hypothalamus; intense fascination with food and sensory causes.

    Picky-ness can mimic anorexia in people with autism; however, the causes for food restriction are very different. Someone who is merely picky cannot tolerate certain tastes, smells or textures while a true anorexic is preoccupied with controlling their weight.

    Furthermore, anorexic girls have been found to exhibit significantly more autism traits than their non-anorexic peers. They scored lower on empathy and higher on systematic thinking among other things. OCD also shares a striking number of similarities with both autism and eating disorders, namely a need for sameness, control and structure.

    If your child refuses to try new foods, the solution is to take baby steps (and I do mean TINY baby steps) toward desensitization. Choose a food item that’s similar to one of his favorite foods. Start by having him look at the food for a few minutes before taking it away. Next time, place the food in front of him for a little longer. Next time have him smell it…then touch it…then lick it. This takes a lot of patience but is much easier than putting your kid on a feeding tube due to malnutrition. You may need to work with an ABA therapist or sensory coach to accomplish your goals, as they’re trained to handle this kind of thing. (Parents are often too emotionally entangled with their babies to be objective or push them past their comfort zone).

    Feel free to email me at welpharecheeze@gmail.com if you’d like to chat about autism, sensory issues, eating disorders or related topics.

    Sincerely,

    An Adult Female with Asperger’s Whose Girlfriend is an ABA Therapist :)

  55. Susan Moffitt says:

    thanks for writing…

  56. kim c says:

    Does anyone know of any good expertsin teens who have eating disorder nos with asd. I’m in. Illinois and both my special needs teens got taken away because my girl lost alotof weight due to dieting and exercizing obsessively
    ..she used to eat well but started slowly limiting food intake.

  57. Susan Moffitt says:

    I would start with a food allergy test. My son stopped eating what little he did and lost weight and it turned out he was allergic to almost everything I’d ever fed him. There’s an ALCAT blood test that profiles 300 foods and it saved his life. He changed his diet based on the results and gained 70 lbs in one year.

    If the test is negative, it’s a good rule out and frees you to be seeking other treatment.

  58. mari says:

    to sharmin,

    please try finding something that your child is interested in like different shapes of things and look for foods shaped like those interests. Example, my daughter wouldn’t eat either and is autistic so I found ABC campbells soup and picked out the letter and put them on a plate. She found them interesting because they were’ent floating in broth with meat or carrots and she picked them up and ate all of them! so that’s how I started to get her to eat and have been continuing ever since. Now she will eat many types of pasta noodles as long as they are plain and have a shaped that is a theme that she likes!! Try it and see if it works for you just remember to go slowly and stick with one type for a while until they are ready to try another cool shape! Best wishes!! Also you could get Dr. Mark Fishbein’s book called “food chaining” it helped a lot. Good Luck – I know these kids can be very difficult and taxing but they are worth it if you just keep finding some form of hope in each moment

  59. Louise says:

    I have a 13yr old son with AS, Sensory Integration Difficulties and severe anxiety. As a baby he would not feed and took 15 different attempts with different tests on bottles to finally accept milk. He finally accepted one smooth type of baby food aged 4. He now eats 5 different food, all high in sugar or salt, and drinks milk with a strawberry flavouring. He is terrified of food. We have tried adding nutrients but he detects the slightest change in test and then refuses food. He is 5ft 10″ now and weighs 126lbs. The last time he was seen by a specialist team was over 3yrs ago. They discharged him as they couldn’t break his thought process and get him to want to change. He is very skinny and boney. A type of baby food that he has eaten for the last 10yrs has now been discontinued and that was the only food, apart from milk, that gave him some nutrients. He still has some baby teeth, apparently because he has never chewed food. He never willingly put anything in his mouth when he was a toddler, was slow to walk and talk, and potty train. Today he has asked for help from the specialists. A breakthrough I thought but he’d like a milkshake that will give him what his body needs to help him become stronger. The doctor refused and is instead referring him for psychological treatment. I know this can’t go on, as he’s becoming more lethargic and is lacking in concentration etc. So will accept what treatment is offered and hope that he’ll agree to see the specialists. To all of you in similar situations I hope that in time there will be some resolve. Its not an easy ride but you’re doing wonders and our children are very appreciative of our efforts even in they can’t show it.
    Lou

  60. Billy says:

    Hello, my 5yr. old nephew was diagnosed with autism at age 2. His eating habits for most of his toddlerhood was suprisingly good considering he has allergies similiar to many of the kids and young adults reffered to on some of the posts here(wheat, soy, milk, nuts, fish to name a few). However, he recently became sick a few months ago, since recovered but after that point(around 6months ago) he will eat nothing but bojangles chicken tenders and ultra thin pretzle sticks. Over the last week, he has virtually stopped eating those too, and has lost more weight. At one point right before his 5th birthday he was almost 70 lb.healthy looking and strong. I checked his weight yesterday and its a measly 57 lb. With a recent spike in height he looks bordering on anorexic to me. I’m worried sick about him, the boy is like my son and my sister (his mother) doesn’t seem to think it’s a problem saying it’s just a phase. My hands are tied as to what i can do since i have no authority in his doctor visits and such, but i have him with me a lot of the time and know for a fact he hasn’t had a bowel movement in almost 3days. His mother supposedly has him on a vitamin supplement but i’m seeing no improvement in his eating, in fact a regression backward as i’m usually the one feeding him lunch and dinner and at best the last few days he just picks and nibbles. Anybody have any suggestions on how to possibly introduce new foods or to try to get him to eat more of the existing ones? I’m concerned if something doesn’t change soon, he will suffer irreversible damage from malntrition. Thanks

  61. Michelle says:

    Just in case any one might be interested.
    Thanks, Michelle

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  63. Daryl says:

    I have been reading through the letters above, as I am searching for additional information for my girlfriends son who is autistic. I must admit that after reading these letters above, just how many families seem to have doctors who are NOT doing full allergy testing! I have questioned my girlfriend on this subject and having her son tested ASAP…

    Something that I hope might be helpful to others here is this. My Cousin has a young son who is also Autistic, and he was Non-Verbal. ( Notice I said ” Was ” Non-Verbal ). My Cousin is not a Medical doctor, nor Medical student; However, after doing her own research, she was able to obtain a Military grant for her son, so that he could have ( Hyperbaric Treatments ). After taking these treatments for 6 weeks, her son began talking and even ordered his own meal when they went to get something to eat.

    I have discussed this treatment with my girlfriend, and she has informed me that at NO Time has any of her doctors discussed this treatment with her. When she did discuss this with her doctors, they seemed surprised that she had knowledge of the treatment, and had good things to say about the possibilities of the treatment. (This treatment may / may not offer the same results as my cousins son; However, why do these opportunities for hope being hidden from families and NOT discussed? Is it because the insurance companies simply will not cover the treatments? Or because the doctors are ignorant to the treatments availability as an option ?

    So my question is this…. Autisum is not new, so why is it that so many treatments are not being discussed with families? I went through this same situation over the past 6 years with family members suffering with Cancer. The doctors did not share adequate information, and family members were afraid if they didn’t follow the doctors advice that their insurance companies would deny them if they didn’t.

    I wish everyone the very best. If you have never heard of the Hyperbaric Treatments, don’t feel surprised. I wish you all the very best. Merry Christmas & God Bless.

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  • * In 1970, Autism affected 1 out of 10,000 children
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