Doctors who care for aging people with autism need to know about the many aspects of autism in order to create an effective treatment plan.
This review article describes the problems that come with the long-term care of people with autism. Adults who were diagnosed with autism in the 1980s are now starting to reach old age and some will need long-term care in homes. There is very little research on what happens as people with autism age, although studies suggest that older people with autism will have many problems. They will likely have trouble knowing others’ intent and they will likely behave in ways that may be hard to manage.
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Responding to relationship development intervention (RDI)
Jul 28, 2011 by AnonymousThank you to all the RDI defenders. It is ridiculous to believe that there is just one tried and true therapy for kids with autsim. I believe ABA works for some kids, but it wasn't even an option for mine. We had a very well-known doctor who agreed with our decision and believed because of our son's personality, ABA might cause of problems for him. We started RDI at home about 2 years ago. We then moved into extendeder services at our home and now have him in an RDI therapeutic school 5 full days a week. WOW, what a difference! My son has made such striders. The extenders are wonderful people who really care about him and his progress. He has built peer relationships at school that I never thought was possible. RDI is not a fad. Because of the nature of the program, progress is documented on a regular basis via videos made by parents, consultants, etc. It is amazing to look back and see how far my son has come. As a parent, you feel supported and a huge part of your child's progress which is so rewarding. I urge other families to take a look at RDI and not be pushed into other therapies that they are not comfortable with. BTW, my son's RDI is covered 100% through insurance after we reach our deductible.
Living Gluten Free – Right to Heal
Feb 22, 2010 by karmic healthBy Sandi Star, CCN
After struggling for over 40 years with chronic migraines, IBS, Muscle and joint pain, fatigue, brain fog, asthma and a slew of other ailments and frustrations I decided to take a closer look at the cause rather than obsessing on the symptoms. I was tired of relying on doctors to give me answers and tired of the medications that only gave me side affects and little relief.
I had been committed to health and fitness for over 20 years, losing close to 50 pounds and 5 dress sizes, however I still had all the chronic conditions that played havoc in my life. I realized there was a key element missing and soon found out it was my reaction to gluten and dairy. I didn't know enough about food intolerance or allergies or at least put the two together. I never believed food could have such a serious impact on overall health let alone be the direct cause of my diseases. With what I know today I’m surprised my doctor didn’t put the connection together when he diagnosed me with Sjögren’s Syndrome (autoimmune disease). Sjögren’s is one of the symptoms of Celiac along with a long list as you will see below and nutrition plays a critical role in the healing process. By making the appropriate diet changes – (gluten and dairy free), I’ve managed to eliminate my migraines, IBS………etc., etc., and have the Sjögren’s Syndrome under control. Even better, I have eliminated all medications and use food and natural remedies for nutrition and overall health. Now that you know why I became a clinical nutritionist and why I started Karmic Health lets get into the details of why it’s so important to understand gluten and its relation to diseases.
Why the problem with gluten now? A lot has changed in the way we harvest food compared to 50 years ago. Some of the seed companies began engineering wheat kernels that could be more easily ground and produce fluffier flour to make the soft, delicious white bread for example had to have greater yields; it made more money for the farmer and increased sales.
Gluten is a composite of the proteins gliadin and glutenin. These exist, conjoined with starch, in the endosperms of some grass-related grains, notably wheat, rye, and barley.
Understanding what happens in the body and some of the symptoms will help millions of people who go undiagnosed. Celiac is the most common genetic disease of mankind (yet for every person diagnosed, 140 will go undiagnosed).
A wheat allergy is the body’s abnormal autoimmune response to a certain protein component of wheat; it’s exhibited by a severe sudden onset allergic reaction. Usual symptoms are immediate coughing, asthma, breathing difficulties, and/or projectile vomiting. It can cause life-threatening responses in allergic people. A true Wheat allergy affects less than 1/2 % of population.
Intolerance's are much more common than true food allergies but are harder to diagnose. Food intolerance is an adverse reaction to food that does not involve the body's immune system. Generally food intolerance is an inability to properly digest certain foods. In some cases food passes right through the body before digestion is complete.
Leaky Gut is an increase in permeability of the intestinal mucosa to luminal macromolecules, antigens, and toxins associated with inflammatory degenerative and/ or atrophic mucosa or lining. Put more simply, large spaces develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream. Leaky Gut Syndrome has also been linked with many conditions, such as: Celiac Disease, Multiple Sclerosis, Fibromyalgia, Autism, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Eczema, Dermatitis, and Ulcerative Colitis.
Celiac disease is an autoimmune disease caused by an inappropriate immune response to dietary proteins found in wheat, rye, and barley (gluten and
gliadin). This response leads to inflammation of the small intestine and to damage and destruction of the villi that line the intestinal wall. These villi are projections (small folds) that increase the surface area of the intestine and allow nutrients, vitamins, minerals, fluids, and electrolytes to be absorbed into the body. When the villi are destroyed, the body is much less capable of absorbing food and begins to develop symptoms associated with malnutrition and malabsorption. When the body is exposed to the gluten and gliadin proteins, it forms antibodies that recognize and act against not only the grain proteins, but also against constituents of the intestinal villi. As long as the patient continues to be exposed to the proteins, he will continue to produce these autoantibodies. Celiac disease is found throughout the world but is most prevalent in those of European descent. It can affect anyone at any age and is more common in women. It is thought to be an inherited tendency that is triggered by an environmental, emotional, or physical event – although the exact mechanism is not fully understood.
According to the National Digestive Diseases Information Clearinghouse, about 5 to 15% of close family members of a celiac disease patient will also have the condition.
Symptoms
There are literally dozens, if not hundreds, of symptoms of gluten intolerance. It all comes down to inflammation in the body! Many people believe the most common symptoms are gastrointestinal in nature - yet the majority of people with gluten intolerance (and celiac disease) have extraintestinal symptoms.
The most common symptoms of celiac disease include:
• Fatigue
• Addison’s disease (hormonal disorder)
• Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, reflux)
• Headaches (including migraines)
• Infertility
• Mouth sores
• Weight loss/gain
• Inability to concentrate
• Moodiness/depression
• Amenorrhea/delayed menarche (menstrual cycles)
• Bone/joint/muscle pain
• Dental enamel hypoplasia (dental enamel defect)
• Short stature
• Seizures
• Tingling numbness in the legs
The “cure” is a life long gluten free diet.
Making the Transition
1. Have a reality check. Remember this is a choice! If you want to feel lousy for the rest of your life and get worse as time goes on then continue eating gluten. If you want to start on a journey to heal; go gluten free!
2. Give it time. It takes time to heal. Take the 45 day challenge.
Within this time frame you will notice the brain fog is gone. Your body will start adjusting to a healthy weight. Yes, you will lose the bloating and weight around the middle. Don’t be discouraged if it takes a little longer to feel 100%.
3. Look at your current diet and go through your pantry and refrigerator to find the foods and meals you already eat that are gluten-free. You may need to keep a food journal if you haven't already.
Be sure to list condiments, ice creams, produce, snacks, and other foods.
This list will be helpful as you create menus around your new foods and give you encouragement that you're already on the right track!
4. Give yourself permission to eat things that you may have restricted from your diet before your diagnosis. Potato chips or GF cookies may not be appropriate for other people, but they are a treat in a GF diet in small doses of course. You will need to find treats for yourself initially as you adjust to this diet. Count calories after you are comfortable with your new way of eating, manage your portions instead.
Once you are comfortable with the switch start cutting back on refined grains, crackers, breads, etc., to help the gut heal quicker. In all honesty, bread will not be that important. It's all about taking baby steps!
5. Look at your current menus and meals and find ways to eliminate gluten from your diet. Replace bread in sandwiches with GF bread or green leaf lettuce and add your favorite fixings and condiments. Have breakfast burritos with rice tortillas instead of toast and eggs. Look for GF hot and cold cereals (must not have barley malt) and have those handy for a snack or meal. Replace bread and crackers with tortilla or corn chips, brown rice cakes or popcorn. For example, chicken or tuna salad on rice cakes or scooped onto corn chips is delicious. Popcorn is a filling side dish with soup. Be on the lookout for meals on your current menus or the menus of friends and family that are naturally gluten-free (roasted chicken, baked sweet potatoes and steamed veggies, for example) and make them a staple on your new menus. Surf the internet, watch cooking shows and browse magazines for ideas and adapt them as you see fit.
6. Clear out any and all foods that have gluten, wheat, wheat flour, oats, oat flour, rye, semolina, or modified food starch from your pantry. This will allow you to see how close you are to living gluten-free already. If you have family members living with you who are not gluten free, you might consider giving the "offending edibles" to them to be put in another part of the house while you learn to live and think gluten-free. As time goes on you can cook for the entire family without gluten.
7. Plan and prepare your meals ahead of time. Being caught hungry without a plan is not a good idea! Keep a few GF soups on hand in case of extreme hunger. Keep a small cooler in your car with snacks such as nuts, dried fruit and water. It helps to outline and pack any meals you're eating at home and away from home, including snacks. An example could be -
o Breakfast: scrambled eggs and mixed vegetables rolled in a rice tortilla, sliced apples, and coffee.
o Lunch: Lettuce with turkey, avocado slices, tomato, and mustard, 1 oz. chips, and 2 organic dark chocolate pieces.
o Dinner: Grilled fish or chicken with mixed vegetables, wild rice, and fruit.
o Snacks: 1 oz. almonds and popcorn.
o Desert: Coconut Ice Cream or fruit.
Tips
1. Be patient with yourself. You'll have days when being gluten-free is really depressing (maybe even "fall off the wagon"). This is normal.
Relax – it’s a process.
2. Carry snacks with you wherever you go. It's often difficult to find an appropriate snack when the hunger strikes. GF bars are great!
3. Arrange with the hosts of gatherings you may attend to bring your own sides or complete meals. Most people are very supportive of restricted diets.
4. Carry a small cooler in your car with small cold packs to store fruit, snacks and water.
5. Consider avoiding restaurants during your transition phase as you learn how to eat and think gluten-free. Grilled meats (over a flame), baked potatoes and salads without croutons are usually safe bets. But keep a log of places you eat, what you ate and how you felt afterward. Gluten is insidious and can turn up in the oddest places (french fries, for example which can be dusted with flour).
6. Get your hands on cookbooks or start collecting your own recipes in a binder.
7. Carry digestive aids (enzyme and bioflavonoid) with you in case of accidental ingestion. There are ones specifically for gluten such as GlutenFlam by Apex Energetics; available from your healthcare practitioner.
8. Consider taking a multi-vitamin to make up for vitamins and minerals you may lack with your new diet (ask your doctor or nutritionist if necessary).
9. Find a mentor or support system.
10. Breathe
About the author: Sandi Star, CCN
Sandi is the founder of Karmic Health, specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial; working with celiac, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on understanding of many health issues and has dedicated her life in helping others reach their optimal health.
For more information related to this article please visit www.karmic-health.com or contact Sandi Star at 760.685.3154
© Copyright Karmic Health 2010
Try, try again
Feb 11, 2008 by AnonymousThomas is excited again because we have my mom’s car…again. Unfortunately, the car started hemorrhaging oil all over the driveway last night, so back to the car doctor it went (thanks, Dad!). Thomas is already looking forward to going to Hayley’s dance class tomorrow, just so that he can ride in Grandma’s car. He’s talking about it right now. I can tell he’s still pulling for a new car. He’s enjoying looking at the Toyota Sienna brochure my dad left on the front seat for us to leaf through.
We took the kids sledding this weekend for the first time ever. We had to find sleds, which we eventually did, and then it was off to the sledding hill. Thomas was a little apprehensive in the car on the way there. He kept saying, “You know, I think we should just go home.” We explained that we understood how hard it is for him to try new things, but that we really thought he’d love it. We got there and the place wasn’t packed, but there were other kids sledding. This hill we went to is huge – too big for our kids, so we just stayed off to the side of the hill and only climbed a third of the way up. Thomas went down the hill the first time with a huge grin on his face! He loved it so much! The sled stopped, Thomas climbed off and picked it up and was running back to us when this sled with two big girls on it came barreling right at him and knocked him over hard, on his sweet little face. At first, I thought for sure that he must have a broken jaw or cheekbone because that snow was packed into ice. The other sled just knocked his feet out from under him with such force that his head went right into the ice. It was horrible to watch – one of those things that happens in slow-motion. Jonathan and I couldn’t run to him without falling down ourselves, and even if we could have, we never would have made it in time.
Just our luck, you know? We try so hard to introduce Thomas to new things gradually and ease him into new situations with a great deal of finesse and patience. We talk him into it, he’s ready to try something new, and then two seven year-olds (who never came over to us to say that they were sorry or even find out if Thomas was okay, and neither did their parents – for shame!) come barreling along and unwittingly ruin everything. Thomas had a big bloody scrape up the side of his face, but no broken bones. He also has bruises on every bone on his left side that protrudes (shoulder, hip, elbow), but he’s okay. We sat down with him for a few minutes, trying not to curse those girls, the sled, the hard snow and our rotten luck out loud. Thomas was really sobbing, but we were able to ride it out. He eventually recovered and agreed to try again! I couldn’t believe it! I thought for sure that getting a smashed face would be the end of our Saturday fun (it would have if it had been my face) but Thomas proved me wrong. We went over to a quieter side of the hill and went down a few times. Unfortunately, the ice covering the hill proved too hard to climb so we came home and played on the gentle slopes behind our house. The kids really loved it, and Thomas has been asking every day since when we can sled again. So we’ve found something else that Thomas enjoys.
We have a big day coming up in our household…Valentine’s Day is a big holiday for us, and especially this year because it is my and Jonathan’s tenth wedding anniversary. We’re going to drop the kids off with my mother-in-law on Saturday and spend part of the day cooking – something we love to do together. We might go out and buy presents for each other, possibly see a movie, but mostly just sit around and wonder where the time went. We’ll pick the kids up on Sunday afternoon. They don’t know they’re going yet, but they love staying at Grandma’s house.
Next Tuesday is Thomas’ Service Team meeting at school. I’m a little confused because I’m not sure what they’re going to talk about; I just had a conference with the teacher and hadn’t expected this meeting until late April or early May. I suppose this means that we’ll have an IEP meeting later on to make final determinations about kindergarten. Again, this meeting is in the morning so Jonathan can’t come…this one includes everyone who works with or evaluates Thomas so there’s absolutely no way to change the time or date. They’ll even go ahead with it if I can’t make it.
One year ago today Jonathan and I were on a cruise ship heading for Jamaica. Today, I was bundled up in the single-digit temperatures pouring cat litter on the oil slick in the driveway. Not quite as glamorous or cosmopolitan. I reminded the kids about the “big boat trip” that Mommy and Daddy went on a year ago while we were eating lunch today. Thomas said that he wanted us all to go on a cruise together sometime so that he could swim with the stingrays too. A year ago, I would have thought it would be absolutely impossible for Thomas ever to do anything like that. Now, it seems not so out-of-reach – actually possible. I wonder what we’ll be able to imagine him doing one year from now. The scope of Thomas’ abilities grows wider all th
Dude, where's my car?
May 14, 2007 by AnonymousNine more days of school. Then Memorial Day, then vacation, and then the summer stretches out into September. Perhaps I’ve been fretting overmuch about these things and that’s why I haven’t written in a week!
Thomas has had four good days in a row at school (and counting…while crossing my fingers) which hasn’t happened since last December. I got an interesting note from his teacher last week, too. It said, “Thomas enjoyed finger-painting today!” Huh? My Thomas? The kid who never gets his hands dirty? His clothes, his face, his knees – yes, but never his hands! One of the goals set for Thomas in his IEP meeting last year was for him to participate in “messy” activities, so perhaps he’s met that one. I can see Thomas participating in finger-painting, but not enjoying it. I was really impressed, and I got to see what he was finger-painting: a Mother’s Day picture for me!
I had a wonderful Mother’s Day this year! Jonathan got me the most beautiful set of dishes…I have been wanting them since I saw the pattern in Better Homes & Gardens (I have neither a “better” home nor a garden, but it’s fun to look). Hayley made me a little “Mom” bracelet in her class last week and Thomas made the finger-painting. Jonathan also got me a hand-held computerized version of Mad Libs, which we’ve been having a riot with…does anyone else use comical-sounding dirty words for Mad Libs, or are we the only mental defectives out there? We also visited my mom and spent some time letting the kids play in their backyard. Jonathan grilled shrimp and vegetables for dinner and it was a very pleasant day. I feel bad for Jonathan, though. Father’s Day is the day after we get home from vacation and I’ll have to try to make his day very special while I’m unpacking and doing loads of laundry.
Thomas seems to have trouble on Tuesdays at school and I think I’ve figured out why. Tuesday is Gym Day. Gym Day always throws Thomas off and I can’t really understand why. Last year, one of his teachers wrote (during that horrid IEP meeting that I’ve talked about; probably in my first blog) that Thomas liked the expanse and openness of the gym. This year, he can’t seem to cope. He usually has good days when they get to go outside and play on the playground, but that’s unstructured time and gym is structured. The teacher has specific activities planned and apparently Thomas doesn’t care for that. The whole thing is perplexing to us since most autistic children thrive on scheduling and routine. Incidentally, Illinois is the only state in the US that requires schools to have a daily physical education program for students, so Thomas has better get used to it. I’m sure if he had gym every day, he’d deal with it better.
We’re so lucky that Thomas can handle environmental changes easily. Last Friday, I put Thomas on the bus and then took Hayley over to my neighbor’s garage sale. There was a large shelving unit in her driveway and I decided to go have a look. Thomas’ room is always a fantastic (fantastic in a bad way) mess. Toys are everywhere, along with the inevitable straw-cup full of old, chunky milk that has gone missing until I clean the place up. Snack wrappers, dirty socks (the kids, like their father, remove their socks and just leave them wherever they fall), crusty bits of old Play-Doh, and almost every surface is sticky.
Anyway, I decided that this shelving system was perfect for Thomas’ room and the price was very reasonable so I paid some men to heft it into the house for me. Upon closer inspection, I realized that it made more sense to rearrange Thomas’ room, putting the shelving unit against the wall where his bed was, and moving his bed to the opposite wall. Once everything was in place, I began organizing toys and putting things on shelves, most of which Thomas can reach without standing on the seat of his tricycle. I got the whole thing finished before Thomas came home from school and showed it to him right away. I was a little worried because I had done all of this on the spur of the moment and hadn’t prepared Thomas for it at all. He came into his room and looked. He smiled faintly and then regarded me very seriously. He asked, “Where are my cars?” He certainly has his priorities figured out.
Another good thing that happened on Friday and then again today is that Thomas has been sitting with another child on the bus! Thomas is the second one to get picked up on his bus in the morning, so there’s only one other boy on it when Thomas gets on. He usually talks to this child for a moment on his way back to his usual seat, asking him if he knows what Sophie is (yes, the dog jumps on the bus with Thomas in the morning), so Friday I asked Thomas if he wanted to sit with this young man. He said that he did and I asked the boy if it was alright. He nodded, so Thomas has sat with him twice now. As long as this boy puts up with it, I’m sure it will last until the end of school (only nine more days…have I mentioned that already?).