A New Support Groups For Adults On The Autism Spectrum In The Milwaukee, WI Area

Due to a shortage of support and services for adults on the Autism Spectrum in our area, I have been involved in starting a support group for adults on the Autism Spectrum, specifically for those who have been known as having Asperger's Syndrome, although we are not sure what to call it since the diagnostic manual has nixed this syndrome in favor of lumping Asperger's into the Autism category. 

For now, it is called "Aspie United."  It is on Facebook and there is also a blog with the same title on Blogspot.  Its goal is Aspies supporting Aspies, and this will include meet-ups, Advocacy and outings.  There is some talk of starting a 501C3 and forming a way to fundraise so we can have more meeting space, and even have some kind of living arrangements for those needing to transition out of their parent's homes without going into a generalized setting that does not understand Autism that well. 

This group is an offshoot of a group for people with Asperger's Syndrome that meets at Independence First once a month on the second Thursday of the month at 6pm, in Downtown Milwaukee, WI.  The focus of this group is Independence and Employment.

One of the founders of that group is part of this new group.  The idea was to meet more often than once a month.

One of the older members took the Mentoring class at Independence First and began to mentor a younger member for a year.  This person is now mentoring another young adult for the next year.  Mentoring is encouraged to help teach what the older Aspies have learned to younger ones, hopefully so that they can avoid common problems and be more successful and less stressed-out because of having a mentor to go to.

Two additional groups have been formed, both meeting at member's houses.  The first is a planning group that is called Aspie Adventure Association.  This group will meet to plan outings and social get-togethers for the month.

This group meets the Second Thursday of the Month at 6pm.

Then there is

Biological Treatments For Autism Spectrum Disorders Support Group

Information and Support for those following a Biological Treatment Plan for Autism Symptoms.

Topics for discussion will revolve around evidence-based treatments with observable outcomes, which are cost-effective and practical for the individual to do.

Resources and referrals to experienced professionals will be available.

Specific areas to be discussed are:

Autism Research Institute's DAN protocol

Special Diets for Autism, including:

GF/CF diet

Feast Without Yeast Diet and Treatment Plan

Body Ecology Diet

Blood Type Diet

Feingold Diet

Vitamins and Supplements Recommended for Autism Spectrum and ADD

Lab Testing, and prescriptions

Other tests such as Sleep Studies, EEG's, PET scans

Removal of exposure to allergens and toxins which trigger or worsen symptoms in Autism

Shopping, Meal Planning, and Cooking

Making and keeping appointments

Questions to ask

Record keeping

An extensive Library of books, scientific articles and resources on the latest research findings with regard to the treatment of Autism spectrum disorders from a biological standpoint will be available.

Meet and talk with people who have improved following the use of biological treatments.

Third Thursday of the Month at 6pm

Note:

This group is focused on Biological Treatments for Autism Spectrum Disorders only. It will not be addressing the large topic of rehabilitation therapies, such as ABA, and other educational approaches, such as Rapid Prompting Method, Floor Time, Relationship Development Intervention, Auditory Integration, Hippo Therapy, Companion Animals, and the Association Method.

However, if there is enough interest, this can be the subject of another group.

Autism Treatments Update
May 2013

My son is now 19 and still doing very well.  We are looking into getting an "official" DAN Doctor so that we can get certain kinds of labwork and try other treatments that need a prescription.  However, doing things the low-tech, inexpensive way has taught me a lot.  I do a lot of research on everything I do for my son and that saves me from having to pay a specialist to figure things out.  However, many families might prefer just paying some professional to do all the research and planning and making all the decisions on what to do next.

David is starting to date, and has been on several dates with several people.  These dates are mostly invites to birthday parties, group dates to movies and the mall, dances, a trip to a roller coaster park, and most recently, a wedding. Oh, and lots of texting and Skyping and such. 

He graduated High School at 18, with a regular diploma, having completed all the necessary coursework.  He is working at 2 volunteer jobs, practicing independence skills at an apartment (not living there) going to the YMCA twice a week, attending a Bible study group for young adults on the spectrum every Sunday, and hanging out with friends.  He is studying Geometry and English at the High School to make up for missing so much regular classwork because he used to be in Special Ed.  He recently learned soldering and took apart a Game Boy system and added a lighted screen to it.

Learning to Ride A Bike

I haven't written an update for a while, so the biggest thing we worked on since my last update was learning to ride a bike three years ago, which took an entire summer but was well worth it.  Over the years, since he was small, I was buying all different kinds of bicycles to see what he would like best, including a nearly adult-sized tricycle, but nothing really worked well.  All our ABA therapists gave it a try teaching him, but to no avail.  He would panic and jump off the bike almost immediately. 

Finally, I heard about a specialized bicycle training program for teaching children with special needs to ride, called "Loose the Training Wheels." 
http://www.lttwsew.org/index.php
"Dr. Richard E. Klein., an experienced engineer from Illinois, is the creator of Lose the Training Wheels, a training program that teaches disabled children and adults how to ride a conventional bike. Richard and his wife Marjorie travel extensively every summer to conduct camps across the nation.   With a proper environment and training with adapted bikes, children who are disabled are taught how to ride and transition to a conventional bike within a 5-day period." 
Loose The Training Wheels is Now called "I Can Shine"
http://icanshine.org/

 The program, (as with most things we need for David) was too expensive for us, so I called them and asked them some advice about what kind of bike to try.

They said to prepare for the program, they had these recommendations:

Buy a good helmet that fits well, and some
elbow pads and knee pads,

And find a bike that has

• balloon tires, 
• upright handlebars
• no hand brakes (back-pedal brakes), 
• no gears at all, 
• a "girl's" type bike that has no straight bar from the seat to the handlebars (it doesn't have to look girlish, of course)
• no basket, mirror, or anything to obstruct forward vision or distract

Remove the pedals from the bike to begin so he would just push with his feet on the ground.  Make sure the bike is short enough that he can sit on the seat with his feet on the ground.  You can lower the seat at first, and then raise it later on when he's riding.

We found a low traffic spot with a very slight incline for him to practice on.  Then when he could just barely ride, we put the pedals back on, and we went to a nearby cemetery where there was no traffic to practice more.  (He didn't take offense at the cemetery at all.)

So we did this and got an inexpensive bike from Sears in Red and White that he liked that looks very retro.

I decided that instead of arguing about going out each day to try to ride, we would simply have a ten minute bike riding practice every single day.  We even set a timer so he would know it would be just 10 minutes.  He seemed to like the consistency.  He got a prize from the "Prize Box" each time just for trying.

I keep at box at home with all kinds of stuff I am certain he will like.  (Certain is the important word, here.)

It took all summer, but with lots of help and encouragement, and often two people, running along on each side, he finally learned.

He loves his bike now.  He rode it to and from school on good weather days for the last two years.  We've finally been able to go trail bike riding as a family. This is important because bike riding is my favorite sport.

We kept the bike simple at first, but as soon as he was riding comfortably he got a bell, a mirror, lights for riding at night, padded bike gloves, a lock, and some other accessories.  He knows how to inflate the tires and lubricate the chain, and takes very good care of it. 

Bike riding is a whole new freedom for him.  Its good exercise, free fun, practical because you can get places you need to get to, more social than being inside a car, and good for the environment.  Its social in that so many people have bikes, and its something he now has in common with just about everyone.

He also learned important rules of the road for any moving vehicle.  This has prepared him for learning to drive a car, which he is now working on.  He has his temps and has been driving for about 9 months now. 

Update on GF/CF Products we really like:
In a previous post I listed our favorite pantry and refrigerator additions.
I have been really enjoying the Shaar bread products.  They are packaged so that they keep on the shelf until you need them.  I like the French Baguettes for making garlic bread with olive oil and garlic.

David has learned to make GF/CF pizza with
Organicville pizza sauce,
Applegate nitrate-free pepperoni,
Daya vegan mozzerella,
organic diced sweet red peppers, (very high in vitamin C) 
Italian Seasoning from Penzy's Spices from where he works 
and we are using plain "Against The Grain" Pizza crust.

Ener G makes gluten-free communion wafers for Church, and

San-J makes organic gluten-free single serving Tamari (soy sauce) packets I can take with us to restaurants.  I requested these from our local co-op and they finally started carrying them a year ago.

He started buying soda on his way home from school, so since he's an adult now, I eased up on our restriction against soda (because of the high fructose corn syrup which has traces of mercury in 30% of it and the food colorings and artificial flavors.)  I found an organic soda made by Blue Sky which he can have no more than one per day.  It used to be an occasional treat, but now is one of the few things I have relaxed on because he's an adult.  

The biggest change with his diet is that he finally began eating some animal products.  I decided I didn't know anybody that doesn't like bacon, so we began with nitrate-free bacon.  It took about a year to get him used to it.  Now he eats very well-cooked bacon (no fat on it) and the nitrate-free pepperoni I mentioned above on pizza.  I think he is more flexible about a lot of things now that he has been feeling better on this diet.

I don't think anybody needs to eat a lot of meat, since the Seventh Day Adventists actually on average live longer than the rest of us and they don't eat meat.  But David doesn't get enough protein yet from just a few nuts and seeds, and he still doesn't eat beans yet.  I do supplement him with sub-lingual vitamin B12.

I read a book on Enzymes for use with Autism treatment and was inspired to try them as a next step.  Both of us now take Gluten Ease digestive enzymes every time we go out to eat even if the server insists its gluten-free, because it takes care of any possible contamination concerns I have had.  I notice it most with myself, since even a tiny crumb can make me sick for hours to three days of feeling lousy.   Now I won't go anywhere without them.

.

My Concerns About Tapioca as a Gluten-Free Ingredient

 

Tapoica as a Gluten-Free Ingredient

Tapioca and exposure to Cyanide

I have a concern about the large amounts of tapioca being used in making gluten-free products. Usually, the main ingredient is rice flour, and potato flour/starch, and then tapioca plus a lesser amount of variety of other ingredients.

Lately, I have been getting a reaction from eating certain GF pre-prepared foods. It could be cross-contamination if it is in a restaurant. But my home is gluten-free. It could be that I am reacting to one of the ingredients. It could be that the flours are processed in facilities that process other white flours, and they could easily become mixed up in the packaging process, or during storage or transportation.

People with Autism are suspected of having an inherited or pre-disposed lowered or impaired ability to detoxify toxins from food and exposure in the environment. This could be from liver damage, also. This makes them more suseptible than the average person to poisoning from heavy metals like lead, mercury, arsenic, and cyanide.

The tapioca plant contains a substance that converts into cyanide in the body unless it is processed carefully to remove this substance. I am asking myself many questions:

How carefully is this process being done in America, and if the tapioca is imported, how carefully are we monitoring the tapioca for remaining amounts of this substance?

And, if tapioca has the potential to cause cyanide poisoning at all, is it safe to be used in products that are being given to people who have Autism, not to mention Celiac disease?

Here is some research I did:

Tapioca is made from the root of the cassava plant.

The cassava plant has either red or green branches with blue spindles on them. The root of the green-branched variant requires treatment to remove linamarin a cyanogenic glycoside occurring naturally in the plant, otherwise it may be converted into cyanide. Konzo (also called mantakassa) is a paralytic disease associated with several weeks of almost exclusive consumption of insufficiently processed bitter cassava. The toxin found in the root of the red-branched variant is less harmful to humans than the green-branched variety. Therefore, the root of the red/purple-branched variant can be consumed directly.

So the question is, which kind of tapioca is in a given product? I wish there was a requirement for labeling a product as to which kind of tapioca the flour is made from.

Tapioca is almost completely protein-free, and contains practically no vitamins. Tapioca is used as a thickener because it never discolors and contains no discernible taste or smell. Moreover, it never coagulates or separates when refrigerated or frozen, and it leaves baked goods (especially bread) with a white color.

Despite being a convenient and functional thickener, however, tapioca flour’s nutritional value leaves a lot to be desired. In fact, from a nutritional standpoint, it is almost worthless.

Aside from being very high in carbohydrates and therefore calories (100g of the flour contains a whopping 340 calories), tapioca flour contains hardly any fiber, fat, or protein (indeed, protein deficiency is a common characteristic amongst people living in regions in which tapioca is a staple food), and practically no vitamins save for trace amounts of niacin, a B vitamin that helps the nervous system to function properly.

Tapioca flour does contains some minerals. 100g of the flour provides us with 1mg of magnesium and iron, 7mg of phosphorous, 20mg of calcium, and 10mg of potassium. However, these are unimpressive figures. To put things in perspective, enriched white flour (widely considered to be unhealthy) exceeds tapioca flour’s mineral content in every regard, often considerably. For example, 100g of white flour contains over 100mg of phosphorous and potassium.

So tapioca flour is a poor substitute nutritionally, even for replacing processed white flour.

The cobalt in artificial _{vitamin B12} contains a cyanide ligand as an artifact of the purification process; this must be removed by the body before the vitamin molecule can be activated for biochemical use.

Cyanide poisoning occurs when a living organism is exposed to a compound that produces cyanide ions (CN⁻) when dissolved in water. Common poisonous cyanide compounds include hydrogen cyanide gas and the crystalline solids potassium cyanide and sodium cyanide. The cyanide ion halts cellular respiration by inhibiting an enzyme in the mitochondria called cytochrome c oxidase.

The cyanide anion is an inhibitor of the enzyme cytochrome c oxidase (also known as aa₃) in the fourth complex of the electron transport chain (found in the membrane of the mitochondria of eukaryotic cells). It attaches to the iron within this protein. The binding of cyanide to this cytochrome prevents transport of electrons from cytochrome c oxidase to oxygen. As a result, the electron transport chain is disrupted, meaning that the cell can no longer aerobically produce ATP for energy. Tissues that depend highly on aerobic respiration, such as the central nervous system and the heart, are particularly affected. This is an example of histotoxic hypoxia.

Cyanide poisoning is a form of histotoxic hypoxia because the cells of an organism are unable to use oxygen, primarily through the inhibition of cytochrome c oxidase. If cyanide is inhaled it causes a coma with seizures, apnea, and cardiac arrest, with death following in a matter of minutes. At lower doses, loss of consciousness may be preceded by general weakness, giddiness, headaches, vertigo, confusion, and perceived difficulty in breathing. At the first stages of unconsciousness, breathing is often sufficient or even rapid, although the state of the victim progresses towards a deep coma, sometimes accompanied by pulmonary edema, and finally cardiac arrest. Skin color goes pink from cyanide-hemoglobin complexes. A fatal dose for humans can be as low as 1.5 mg/kg body weight.[1]
Blood cyanide concentrations may be measured as a means of confirming the diagnosis in hospitalized patients or to assist in the forensic investigation of a criminal poisoning. Cyanide toxicity can occur following the ingestion of large doses of amygdalin (found in almonds and apricot kernels and marketed as an alternative cancer cure), prolonged administration of sodium nitroprusside, and after exposure to gases produced by the combustion of synthetic materials.
In addition to pesticide and insecticide, cyanide is contained in tobacco smoke, smoke from building fires and some foods, like almonds, apricot kernel, cassava, yucca, manioc, and apple seeds. Vitamin B12 in the form of hydroxycobalamin, or hydroxocobalamin, may reduce the negative effects of chronic exposure, and a deficiency can lead to negative health effects following exposure.
Exposure to lower levels of cyanide over a long period (e.g., after use of cassava roots as a primary food source in tropical Africa) results in increased blood cyanide levels, which can result in weakness and a variety of symptoms, including permanent paralysis, nervous lesions, hypothyroidism, and miscarriages. Other effects include mild liver and kidney damage.

Most significantly, hydrogen cyanide released from pellets of Zyklon-B was used extensively in the systematic mass murders of the Holocaust, especially in extermination camps. Poisoning by hydrogen cyanide gas within a gas chamber (as a salt of hydrocyanic acid is dropped into a strong acid, usually sulfuric acid) is one method of executing a condemned prisoner as the condemned prisoner eventually breathes the lethal fumes.

Cyanide poisoning is sometimes treated with Oxygen, which may explain why hyperbaric oxygen works for some children with Autism.

It can also be treated with a form of vitamin B12:

Hydroxocobalamin

Hydroxocobalamin, a form (or vitamer) of vitamin B12 made by bacteria, and sometimes denoted vitamin B12a, is used to bind cyanide to form the harmless cyanocobalamin form of vitamin B12. Hydroxocobalamin is newly approved in the US and is available in Cyanokit antidote kits.

And an antidote can be from the use of glucose and nitrites, which might explain why people in our country prefer sugary foods and foods preserved with nitrites.

Food additive

Due to the high stability of their complexation with iron, ferrocyanides (Sodium ferrocyanide E535, Potassium ferrocyanide E536, and Calcium ferrocyanide E538) do not decompose to lethal levels in the human body and are used in the food industry as, e.g., an anticaking agent in table salt.

This could be why iron supplementation can benefit persons with Autism.

I am concerned that anti-caking agents are not listed as an ingredient on food labels except as a number. For people who have trouble detoxifying cyanide these agents could be very harmful to them, adding to their total toxic burden.

What's for dinner Saturday night?

A Gluten-free choice for dinner:

In my City, Wauwatosa, we have a new Farmer's Market this summer. Organic produce, live music, fresh made drip coffee, crepes made while you watch, the very BEST apple cider I have ever tasted (I hate the taste of preservatives.) Its close to my house and we take our bikes there every Saturday morning.

Farmer's markets are my favorite places because I get to watch puppies and children and cyclists. Our market is right on a railroad track and we get to see the trains close up. It's on a beautiful scenic bike trail, and also alongside the Menomonee River, by a bluff filled with old trees that provide shade. A tiny red historical building that just was remodelled sells candy nearby, and our favorite restaurant, Noodles, is just over the bridge.

My friend Linda runs a business making naturally gluten-free Mexican food using grass-fed, hormone-free meats. She sells them at the Farmer's Market in pans, frozen, and so every Saturday all summer, this has been dinner. My favorite is the vegetarain ones with spinach and black beans.

Linda Mulholland is the owner of Cocina DeLeon. Linda's enchiladas and side dishes are based on her mother's recipes from Monterrey, Mexico. In creating her recipes, Linda took the flavors she loved growing up; lime, salsas, chiles, garlic, corn tortillas, and Mexican cheeses.

Cocina DeLeon
18900 W. Bluemound Rd., Suite 117
Brookfield, WI 53045

(414) 403-8650

Linda@cocinadeleongourmet.com

Update on what we are doing

Years ago, while searching for products to use for our GF/CF diet, I discovered that we have a place in Wisconsin, in the City of Grafton called Slow Poke's.

Slow Poke's is run by a mother who had a son with ADD and some other health and emotional issues.
She did a ton of research and changed the way the family ate.
This worked and her son is now off to college and his health is much better. She opened a store to provide information and products she had trouble finding when transitioning to this style of eating.

Its part of the Slow Foods movement, cooking from scratch, and going back to some traditional cooking and eating methods that went out of favor when people wanted the convenience of fast foods and using packaged foods. Our culture changed our diets when newer methods of preserving foods came into common usage, and even though they were improvements in food preservation and distribution, not all of them were improvements for our health. Certainly we had fewer germs, but we also lost some of our natural ability to harbor good organisms that are essential for our digestion and assimilation of nutrients from food.

The GF/CF diet which helps some people with Autism, is also part of this larger eating/cooking style.
We have been on the GF/CF diet for almost three years, and did the diet with my son about 10 years ago, but it was much more difficult for us to do back then, and so we didn't try again for a while. Now there are so many more GF/CF products available, and more support and community awareness, and that makes it so much easier this time. Who knew just trying to eat a certain way would be so difficult in life?

I have tried years ago to follow some of the additional guidelines recommended at Slow Poke's, but until my son got somewhat better it was very difficult to implement any changes, and too much change all at once was difficult. Plus, I had only so much energy myself, because I was also not feeling well at the time, and I have another child with a very different disability to care for also.

Well, we are all doing much better. I implemented the GF/CF diet for the whole family 3 years ago and within 2 weeks, my own long-standing health symptoms improved. This gave me more energy to work on refining things better for my Autistic son. My Autistic son is doing really well. His grades in high school are good, and he has friends.

So I went back to Slow Poke's, the store I mentioned above, and picked up the book that she recommends and designed her store around. I have been doing parts of it's recommendations already, but I am ready to try more of them.

The method is called Body Ecology, and it focuses on the intestinal flora and fauna that help us digest our food, along with other methods for maximizing digestion and assimilation of nutrients from food.

I decided to post what I am doing and putting updates on it. Is anyone else trying the Body Ecology method/life style? It fits well with GF/CF.

^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v^v

So after talking with some people who have been doing this for a while, reading one of the books on it, and doing some on-line research, I have implemented these things:

* Rinsing, soaking, rinsing and soaking some more all seeds, beans and nuts before cooking/eating them.
There is a chemical that is released by any seed, nut that is meant to start growing after being planted and watered to keep fungus and from degrading too much before sprouting. This chemical can inhibit the enzymes we need to digest them.

This was the best suggestion! I have found that doing this has made all these things much easier to digest for myself, but I still can't get my son to eat beans. It certainly makes almonds much nicer to eat. I buy raw, organic almonds, and soak them in the refrigerator. You can slip off the brown "jackets" and end up with a creamy white nut that is easy to chew and tastes better than the plain raw almond.

* Individualizing for Blood Type
I was pleased to see that the Body Ecology diet recommends individualizing diet for each person, particularly based on blood type, which I have done. The hardest part of this change was getting our blood types, because Doctors don't seem to keep this information on file for anyone any more. However, it was worth doing, because I found some foods I had never tried before that were recommended for my blood type, that I now eat on a regular basis because I really like them, and I feel really good after eating them (In particular, for me this has been making black-eyed peas and turnip greens, yum! I have never tried them before.) Its like someone just knew what would give me extra energy and taste good. Because I follow the GF/CF restrictions already, it seems like its hard enough to figure out what to make for meals, and so being able to add these new foods was very helpful. (GF/CF is recommended for my blood type, so no conflict there.)

* Using Fermented and Active Culture Foods
In the past, I used acidolphus-bifidus supplements, and yogurt. But many yogurts have modified food starch added, which is often made with wheat starch. And there is casein in the dairy. I am told that one breed of cattle produce dairy that has much lower casein in it, but I haven't been able to go that far...as to finding the right cows!

* Raw Dairy
Our state is currently battling out whether to allow raw milk to be sold to consumers. The Body Ecology diet recommends raw milk products and particularly cultured products and butter made from raw milk. This is tricky to do, because if you go to a farmer in our state, (we are a big dairy producing state) you have to ask for "milk for my pet" or give some such excuse. I know of an elderly woman in my area who lost her son to a disease he got from drinking raw milk, so I know there is some risk involved. You have to know the farmer and that the cows and milk are being handled properly.

So I have tried various forms of Kefir that are available at our local co-op, and a home-made version made at Slow Poke's. I don't like the artificial sweetener they use in some of them. I like the version made from coconut milk the best so far. The raw milk ones taste the best, but probably because of all the milk fat. I noticed I gained a pound after drinking a lot of this, so I am going to cut back a little. My son likes the Kefir strawberry flavour.

Once I find a type of Kefir I like the best, I am going to try making it myself with a starter available from Body Ecology.

* Food Combining
I started doing food-combining, but this has been tricky to implement for the whole family, because right now I make one son's lunch and he loves this gluten-free bread for sandwiches (made by "Against The Grain -- The Gluten-Free Gourmet." Against the Grain's recipe is really excellent, but has a small amount of dairy.) Most sandwiches combine a starch with a protein, which is not recommended.

* Sea Vegetables
Because I was a vegan macrobiotic for a year a long time ago (before kids), I learned to use sea vegetables in cooking and so I have already been doing that, but I have increased my use again. I am going to try using them as snacks sometimes.

* Sauerkraut
I have been reading about how to make living sauerkraut, or fermented vegetables, but I just can't picture it. I have a reluctance to let anything ferment, probably my ultra-clean upbringing. (My Mother could have been Martha Stewart.) Has anyone else tried to make sauerkraut?

* 80/20
This one is tougher if you have a really tasty meal in front of you. The idea is to stop eating after you are 80% full, leaving 20% of your "room" for digestion. It helps to wait 20 minutes before even thinking about getting seconds, because that's how long it takes for the hormone that signals your brain that you are full to get to your brain.

80/20 also refers to having about 80% of your plate be vegetables, and 20% proteins.

* Cooking some things and not others
Some vegetables (and even meats, like Sushi) are best eaten raw, particularly in the summer when they are fresh and in-season. Others are best eaten cooked because they have things in them that need to be neutralized. For instance, I need to always cook cauliflower because it can interfere with my thyroid, and I am already on thyroid medication for an underactive thyroid. Fermentation helps this, too. For one thing, as far as I know, all forms of non-fermented soy suppresses thyroid function. I'm still trying to memorize the lists of foods to eat raw versus cooked.

None of these changes is as dramatic as the change to GF/CF was. The results are pretty good. I find that cooking this way so far is helping me, and my kids are still getting used to it, but haven't complained about anything so far.

Slow Poke's Local Food, Grafton, WI
http://www.slowpokeslocalfood.com/

Body Ecology Diet
http://www.bodyecology.com/

Temple Grandin Movie

Check out the movie about Dr. Temple Grandin on HBO, which is now out on DVD with commentary from Dr. Grandin.

Dr. Grandin is a successful author, designer, speaker, and advocate for the humane treatment of animals. She also has Autism.

The movie swept the Emmys.

Its worth seeing if you know anyone with Autism and want to know more about how it feels to be on the Autism spectrum.

It's also are very well made film that is fascinating to watch.

Gluten Free Living Magazine

Another great resource for GF/CF living! Nice glossy photos, recipes and helps me keep motivated.

A new magazine I just got and has some really great articles, such as:
"Children with Autism; more are following a GFCF diet."
"Safe Sips - Beverages to Quench Your Thirst"
"Tricky Triangle - Gluten Intolerance, Gluten Sensitivity, Celiac Disease"

"Gluten-Free Living Magazine; Leading the way to a happy, healthy, Gluten-Free life."

www.glutenfreeliving.com

I particularly liked the article on the tricky triangle. I think that each person in our family is different with regard to how our problems with gluten could be diagnosed.

Movie Review - The Horse Boy

I just saw a preview of the movie, "The Horse Boy." As the parent of a 16-year old child with Autism, I was pleased to see Autism getting more public attention and that a family was willing to let the world see their son's stuggles and healing, their parenting, and their challenges with accepting and dealing with Autism on a daily basis.

There are so many things about this movie I can identify with. The period of grieving the loss of the child you might have had, the period of learning to accept the child you do have, and the period where you stretch and learn and grow into someone you never thought you could be while searching for answers to a puzzle no one has quite figured out. I understand the great love and desperation that drives a parent to try everything in their power to try to help their child -- even non-mainstream things that you would never have considered otherwise.

This journey took me all kinds of places I never would have been and developed my risk-taking skills, and I learned so much about so many things. And sometimes you just have to surrender to what is, and learn to just be with instead of force a child to change. This surrender is much like a spiritual process, and so the parents in the film have reached out to spiritual healers in Mongolia through their son's connection to animals, and the families' connection to horses.

Our son did horseback riding as part of his therapy. We couldn't afford the more formal "Hippotherapy" which involves having a specifically trained therapist, a person who also specially trains the horses, and, of course, specially trained horses. This is expensive, and might be partially unnecessary to the process, since mainly having trained people is for safety reasons, and for liability and insurance purposes. The father in the film says that he had trained horses, and taught horseback riding, and so was very familiar with horses already.

http://www.americanequestrian.com/hippotherapy.htm

We had a therapist already working for us doing ABA therapy (Lovaas type) who had rescued a police horse from being put down because of a stroke. He offered to help our son ride his huge disabled horse, and they helped each other to heal.

http://www.lovaas.com/

In some ways, I think Autism resembles a stroke in the brain, because there seems to be some type of brain injury that occurs that happens in genetically susceptible individuals. There are some behaviors that all the coaching, training and discipline in the world are intractable at any given moment, and they seem more like a brain adaptation to abnormal sensory processing than anything like a discipline issue, or a lack of information (education). This makes any Autism therapy more like rehabilitation than like education, although these two modalities resemble each other.

Autistic people use their senses differently, probably not by choice, but because they have to. And this can lead them to be more like animals, who sense the world differently than we do, and don't use a formal (structured) language to communicate. When the five senses are hypersensitive, and social/language brain activity is less sensitive, then it seems like other human abilities can come into play that we were never aware that we had. Autism uncovers unusual abilities side-by-side with very limiting dis-abilities.

I read a lot about Shamanism before and since having my son, (I am a practicing Christian by choice) and I understand how a Shamanistic method might be attractive to the parents in this film as a healing modality. When nothing else works, and your child has been given a diagnosis that is just as intense as a cancer diagnosis, you often pray first...and often. And the compelling change in the child after being with the Shaman's is proof that ancient and folk ways do have a place in healing.

"Shaman, Healer, Sage: How to Heal Yourself and Others with the Energy Medicine of the Americas" by Alberto Villoldo Ph.D.

I am concerned, however, that people don't stereotype Autism as only some kind of demon possession, although it might be characterised that way, and spiritually it might seem like that. We had a superstitious church in our city that took a 6 year old Autistic boy and tried to expel the demon from him by holding him down for hours at a time, and the child died. This is what I am afraid of...a fundamental approach toward a spiritual answer that takes Autism itself too literally and the illness is not literally demon possession.

Autistic boy dies at faith healing service
Police: Pastor's brother held on suspicion of child abuse

http://www.cnn.com/2003/US/Midwest/08/24/autistic.boy.death/

Trying to peg Autism into an already-existing category does a disservice to the child, and inhibits what you might learn from the child's illness and/or genetic differences by observing how this disease/illness is unique, and how each individual Autistic child is unique. A child might have a deep spiritual side that is relatively unaffected by his disability, or might even be enhanced by the Autism.

But it could go the other way and the Autistic might be affected by a spiritual challenge that is overshadowed by his or her manifestations of Autism symptoms. However, it is not just a spiritual problem. And even if Autism has a spiritual origin (perhaps everything in this world is of spiritual origin) it does have very real physical components that can be dealt with, and very real symptoms that must be dealt with.

The Mongolian people accepted the child and the parents and didn't seem to judge them. Acceptance is the cornerstone of a treatment modality that I am very drawn to and used this approach a lot over the last ten years with my son, which is called the Sonrise Method, by Barry Kaufman. We didn't go to the treatment center because of the expense, but I got a lot out of reading his books and following the spirit of the methods the center employs.

http://www.autismtreatmentcenter.org/

Before you can change anything, you must first accept what is. To put it another way, (as per Dr. Phil) You can't change what you don't acknowledge.

As I have learned, you can't change Autism by simply fighting with it. Increased disciplinary measures don't work (in the way we traditionally discipline), but it takes great discipline on the part of the adults in the child's life to do what does work, with enough clarity, understanding, persisitence, consistency, and with enough accuracy. What you resist, persists. And focusing on the "bad" might only enhance the unwanted aspects you are trying to modify. Forcing the child to hide the symptoms of his illness, and not to express his discomfort except in certain very specific ways, seems almost abusive, if you were to view it as if it were diabetes, or any other injury or illness.

There was a child in our state that had diabetes, and the fundamentalist religious parents chose to only use prayer as a healing method, and the girl died at age 11 from a very treatable disease. She had been displaying serious symptoms for a long time.

Parents charged in diabetes death
They didn't get medical help for sick daughter

http://www.jsonline.com/news/wisconsin/29556929.html

There were several symptoms that my son had that were considered socially odd, and we had a very difficult time changing them. We then realised that some things, like hand-flapping, were self-regulatory mechanisms that he was using to manage his energy and emotions. When we tried to completely eradicate hand-flapping at a young age, he only became more agitated and had a more difficult time focusing on what we were trying to teach him. After a few years, the hand-flapping was something more amenable to change, and he learned to bite his fingernails instead. His fingernails would be almost completely bitten off, but this was more "socially acceptable-looking" behavior and so it was tolerated for a while until we could find some other way to help him self-regulate. He went through several phases like this, with each adaptation becoming more sociably acceptable, until now he is very close to being normal. I can still spot the self-regulatory things he does, but most people wouldn't see it as any kind of problem.

At age 4, the parents in the movie were already saying that no other healing methods were working. Of the many methods we tried, most of them required some time, and quite a bit of skill and ingenuity to implement with an Autistic child. I am concerned, for instance, that many parents who try the GF/CF diet for Autism don't do it thoroughly enough and for not enough time to affect any lasting change. When we first tried it, other family members undermined the effort, and the school and extended family were totally unfamiliar with it, and not interested enough in this method to really be on-board with it. Then, several years later, on trying it again, with more resources, and more products available, and a different strategy, it worked.

The strategy that finally worked best for us with the GF/CF diet was to put the entire family on it. Paradoxially it seemed to be easier than just putting the Autistic child on it. And also, other family members' health improved as a bonus.

Karyn Seroussi wrote about this diet's use for Autism years ago, and here is a link to an article that I first read before trying this healing method:

http://www.autisminfo.com/seroussi.htm

http://www.youtube.com/watch?v=2EJUsyypI4Y

http://www.amazon.com/Unraveling-Mystery-Pervasive-Developmental-Disorder/dp/0767907981

I will post again with what these differences were.

I was not expecting to like this movie. I was sure that I would be disappointed by any parent's approach that claimed that only horseback riding, and only Shammanism worked for their son's Autism. I am tempted to think that removing the child from his home environment for an extended period of time, to an un-industrial area where the ambient toxin levels were lower, and the foods were less processed and locally grown, all contributed, in part to their son's improvements. Plus, the extended, loving focus of the parents and all the surrounding people's concern and non-judgemental attitudes probably helped the boy tremendously. The little boy who accompanied the group was very tolerant of the child's differences.

We found that having a peer who was recruited to play with our son helped him a lot. This helped him learn in a more age-appropriate way (i.e., not all coming from adults, in an adult sort of way.) A lot of Autistic children grow up to be like "mini-professors," acting more like miniature adults, because they mimic the authoritarian, information-based, and lecture-type communication given them by adults. This style, of course, doesn't often go over well with other children, who would often much rather just play. And play is a form of learning among higher-intelligence animals (as well as with humans.)


But I did like the movie. I loved seeing it with my son, and asking him if he remembered being like this or that. There were a lot of memories that came flooding back, about the difficulties, and the joys. I loved seeing the beautiful Mongolian landscapes and people. I loved seeing the great love and concern between the parents and their child. The horses were beautiful, and the suspense of what the outcome of the risks this family was taking was intriguing.

I wish everyone who thinks that parents of Autistic children are somehow "refrigerator parents" would see this movie. I hope that everyone who thinks Autism is just something that requires more discipline would see this movie. I think that people who think that Autism sometimes resembles a tantruming, colicy, child can see that it is more than that.

These children are in real distress. I think that you can see in the movie that the child does suffer and is not enjoying any benefit of a "power struggle." I think that the child's suffering should spur us to find better treatments for Autistic children and to provide more help for their overwhelmed parents. And to not look only at traditional healing modalities as the only possible alternative for treatment. This is a baffling illness and we might be limiting ourselves too much if we only look in the tired, worn paths for the answers.

It is unfortunate that insurance doesn't cover Autism treatments of any kind (until only very recently) and even if it did, it would never cover about two thirds of the things that have really helped our son.

I think that in some ways, insurance stifles innovation in healing. And by its institutional nature it can minimize and even denigrate traditional healing modalities. So I hope that all those who are concerned about the best interest of the child with Autism and their caregivers will still look in a broad spectrum of healing alternatives for the possible answers. And not every child will respond in a cookie-cutter fashion to a certain treatment. And so unless (until!) we can find a cure or better yet, a prevention, we will have to have a lot of tricks up our sleeves to try.

We have inherited a very large tool kit of healing methods, and we are only using a small portion of it. I hope we can find a more balanced approach in the future.

“Few tragedies can be more extensive than the stunting of life, few injustices deeper than the denial of an opportunity to strive or even to hope, by a limit imposed from without, but falsely identified as lying within.”

~Stephen Jay Gould

Two Great Non-Fiction Books About Autism

Several good fiction books about Autism:

"The Curious Incident of the Dog in the Night-Time" (Doubleday, 2003)
by Mark Haddon
This award-winning novel's main character is a 15-year-old autistic boy. It's a good mystery as well as a good character description.

ISBN: 1400032717 (paperback, 240 pages, Vintage, 2004); ISBN: 0385512104 (hardcover, 226 pages, Doubleday, 2003); ISBN: 0385509456 (hardcover, 240 pages); ISBN: 0385659792 (hardcover, 240 pages, Doubleday Canada Ltd, 2003); ISBN: 1402555989 (audio cassette, Recorded Books, 2003); ISBN: 1402568851 (audio CD, Recorded Books, 2003). [autism,fiction]

"Look Me in the Eye: My Life with Asperger's "
by John Elder Robison

The brother of Augusten Burroughs (author of the bestselling memoir "Running with Scissors") has created an entertaining and often surprising memoir about growing up with Asperger's Syndrome.

I bought these books for my sons' school library and recommended them as part of a reading list for his high school, since they describe life as an Autistic and also are current best-sellers which are a great read.

It helps to understand the inner workings of a mind that is very different from one's own. It helps to "get" someone on the Autism spectrum better than some dry diagnostic description.

Warning about High Fructose Corn Syrup

Warning:

High Fructose Corn Syrup has been found to be contaminated with mercury.

Another reason to avoid this food additive....

"many foods sweetened with HFCS contain mercury, left as a residue in the production of caustic soda, a key ingredient in HFCS. The FDA and the industry have known about this potential toxin and has continued serving it up since at least 2005.

The HFCS industry has been shrouded in mystery since it began in the 1970s, essentially the result of “get big or get out” record corn harvests and subsequent plummeting commodity prices for farmers. What to do with all that excess corn? The answer was not to decrease yields, but to find a way to get that corn into our stomachs. This has led to the proliferation of HFCS in nearly all processed foods you find in the grocery store. The industry has lacked transparency, and our government has refused to mediate our current health crisis — an upswing in diabetes and obesity resulting from cheap calories like HFCS — with regulation. So its not surprising that it took so long for the news to reach the public eye.

The initial study led by Renee Dufault, a now-retired Environmental Health Officer-cum-whistleblower, was published yesterday in Environmental Health, and found that nearly half the samples of HFCS tested contained mercury residue. The impetus for the study was to find approximately 58 tons of mercury that was reported missing in 2000 (and it is assumed yearly) from the chlor-alkali plants (makers of chlorine and caustic soda) in operation in the U.S.

Where has it gone? apparently some of it has gone into our veins and tissues.

Before now, our greatest threat for mercury exposure was through fish, followed by mercury amalgam in dentistry and through vaccines, as it is sometimes used as a preservative. But Dufault’s study estimates that exposure via HFCS could be up to 50 times that of mercury amalgam exposure in children age 3-19, as this age group is the largest consumers of HFCS.

Of course we know that mercury is a cumulative toxin, especially dangerous to pregnant women and children, and that those with high exposure (Jeremy Piven among them, from eating too much sushi) show signs of sensory impairment, sensation loss and lack of coordination. This disorder was formerly referred to as Mad Hatter’s Syndrome, because haberdashers who produced felt hats in the 18th and 19th centuries used a mercury compound in their process.

We too have had a potential day to day exposure to the heavy metal, just by choosing our food from the boxes and bottles in the center aisles of the grocery store. Aside from the case against us for improper nutrition, we could be slowly poisoning ourselves.

A second study, by David Wallinga, M.D. and his co-authors entitled “Not So Sweet: Missing Mercury and High Fructose Corn Syrup,” tested products directly from the supermarket. One in three tested positive for mercury residue. These included products like Smucker’s Strawberry Jelly, Hunt’s Tomato Ketchup, Hershey’s Chocolate Syrup, Nutra Grain Strawberry Cereal Bars, Pop-Tarts Frosted Blueberry and Coca-Cola Classic.

The reason Wallinga cited for his extension of the original study was that:Many of these products are specifically marketed to groups vulnerable to mercury. Soft drinks, fruit juices, and other junk food are successfully marketed to children not only through Internet and television advertising, but also in school vending machine and cafeteria options. People who rely on food stamps or who live in lower socioeconomic neighborhoods are also a special target for junk food manufacturers, because they offer the most accessible and often least expensive calories in the grocery store.

He went on to criticize the FDA for not doing its job, and urged for mercury, which is not required to produce HFCS, to be taken out of the process. I agree, but I would like to see our government push the corn refining industry further: They should be shouldering responsibility for our declining health in this country, and as such, should be more adequately regulated. If it were up to food justice advocates, the substance would be banned outright. But corn refiners should at least be held accountable for misleading advertising, and consumers should be aware of what they are buying, through better transparency on labels.

So the question is, what will the FDA do with this new found information? Dufault urges the creation of a mercury surveillance program, that monitors foods besides fish, along with additional public health evaluation of the exposure to mercury through HFCS. But can we really keep avoiding the deeper problem, that HFCS, as a product of the human imagination, could possibly be a failed experiment? For the sake of our health, it might be time for the government to finally intervene."

~Paula Crossfield is the managing editor of Civil Eats.

Original source:

http://civileats.com/2009/01/27/is-high-fructose-corn-syrup-turning-us-into-mad-hatters/

There is no safe level of mercury in our bodies.

Mercury poisoning has been implicated in the high incidence of cases of Autism.

One Year Update on Doing the GF/CF Diet

Earlier I posted a personal experience with putting an Autistic boy on the GF/CF diet. Here is an update one year later (the posting was written a year ago for another Forum, but I didn't put it on this blog right away.)

My son is 15 and was a non-verbal, moderately Autistic child when diagnosed. He had a lot of behavior issues and minimal responsiveness to the world outside our own home, and tons of feeding issues. He had GI studies which showed unusual lesions in his stomach nobody could explain or treat. Some Doctors think that this is actually a result of measles from the MMR and an incomplete immune reaction to the immunization.

The first month was all about getting ready. I cleared out the entire house of anything with Gluten and Casein in it and gave away what was still good to friends and a food pantry. I printed up the diet guidelines, and gave them to the school and family members who would be eating with him. I printed up cards with the restrictions on it to give to staff at restaraunts. I started following two publications: The "Gluten-Free Girl" blog, and "Living Without Magazine."

Reading the Gluten-Free Girl's book by the same name (its in our local library) led me to recognize some of her same symptoms in myself, too. So I put the entire family on the diet. Its SO MUCH EASIER this way. No worry about what to eat, what is OK to eat. I put the pantry together with enough stuff over a week or two so that I had enough snacks to tide us over until I could make more of the meals on my own. My autistic son was already pretty much eating things we could keep. The only thing he ended up missing was pizza. I tried to make a GF/CF pizza, but he didn't like the version I made at the time. Later, I found a brand of frozen pizza that is made GF/CF which he is starting to get used to. I think after a year, he's forgotten the taste of the other kind of pizza, so the difference isn't so obvious.

Anyway, the results are in. After a few "misses" where his Dad had trouble with buying into it, his behavior improved so much that even he is more convinced that the diet is worth the trouble of being careful even away from home. The school is very, very convinced. Enough to have taken an interest in how the diet works, and providing a separate place for him to prepare his own food, and to provide staff support during lunchtime. The caffeteria staff has agreed to provide one item he really likes at the school during lunches for him.

He is on the honor roll now. His behavior issues have dwindled to almost none, from several times a week. He has learned to cook his own lunch at school, knows what is on his own diet (with a little mock moaning about it, but he follows it anyway.) He even makes extra food for friends. He eats with everyone else in the caffeteria. He has several new friends (non-special ed.) and has been to two dances, and has some girlfriends (nothing serious.) He has made a movie, posted it to UTube, and has about 50 friends on Facebook. He is doing advanced work in computers and even finished his exam ahead of time, so he could take that day off and made plans with friends instead. He can go independently to a restaraunt with friends.

He's grown several inches and is now taller than his father. He looks very healthy and is height/weight proportionate.

He doesn't think he's all that different, but everyone else is noticing how much better he is doing. He even sleeps better at night.

It wasn't a dramatic, overnight change. But mine was. Within a week of following this diet strictly myself, I lost all symptoms of health problems I had been having for over 20 years. I was able to go off all prescription medications I was on, and so was my son. He only takes some supplements now. There really is something to this diet. But it is something you can't cheat on (no, nobody is going to have an allergic reaction like some kids have to peanuts) but if you cheat, it does make a difference. Even if you have some food that seems GF/CF, but has tiny amounts in the form of additives or cross-contamination you can have a difference.

I think that for my son, he might be able to cheat a bit as time goes on, but for me, I can tell right away because I have pain and all my old symptoms return for at least 5 hours to 3 days.

Autistics have an unusual tolerance for pain (and an equally unusual intolerance for light touch and bright lights and loud sounds.) So perhaps my son doesn't notice pain that might have been similar to mine. Either that, or his symptoms hadn't had the chance to progress to the level mine had over the last 20 years.

I hope that someday this diet is researched better. But it is unlikely that drug manufacturers will fund it because it isn't a drug treatment. Parents, the government, and charity funders will have to do it.

I hope that every parent of an Autistic child at least hears about the potential for this diet to help their child. It might not help every child, but I have a feeling that some families have a hard time keeping the strictness required, like we had the first time we tried it. It really helped to have the blogs, the magazine, the family support and the school support. This time around, it really helped to have more choices of prepared foods. There is a bakery in a nearby town that makes some really delicious fresh baked goods that are Celiac-friendly, and that has helped a lot.

My extended family has all seen such improvement in us that my sister, mother and a neice have all gone on versions of this diet. The neice's rhumatism has gone into remission. My sister lost the last 5 pounds she has been battling to get to a size 6. I lost 25 lbs without trying to. I never thought to even suggest they try an autism diet for these things (except the rhumatism.)

I have so much more energy that I have started learning swing dancing, joined the local gym and work out every day now. I feel like a whole new person.

The diet isn't a weight loss diet. You can loose weight if you want to. Nor is it for treating Fibromyalgia (I had been diagnosed with Fibromyalgia, IBS, Chronic Fatigue, low thyroid and headaches.) However, for anyone with chronic pain, I suggest at least trying it for two weeks. I could tell after only one week.

The high point of the year was when my family produced an entire Christmas feast that was GF/CF for us, and I got my very first GF/CF birthday cake for my 50th. I wish I had known to do this 30 years ago.

I sometimes wonder now, that if I had avoided these two allergens back then, if I might have prevented at least some aspects of my son being born with Autism.

Personally, I think my son inherited certain genes, and my immune system was compromised by stress from the loss of my first child to cancer. My imbalanced immunity was passed to him through the neonatal period and from nursing. After which, the many, many immunizations he was given made his immune system become unbalanced in a way that has neurological implications.

Emotional Integrity

Say What You Mean
~
Mean What You Say


A lot of the misunderstandings that happen around people with Autism could be prevented if people could follow this. Both the neuro-typical people and the people with Autism.

The say what you mean part includes:

No sarcasm -- because often even when a person with Autism "gets it" they have a much harder time with decoding sarcasm when anxious or over-stimulated.

No slang -- people with Autism tend to be way behind their peers in learning slang terms, partly from having spent less time with peers in casual settings, and partly from lack of paying attention to things not in their area of interest.

No innuendo -- "wink, wink" people with Autism often miss the body language that modifies a supposedly "absurd" bit of dialogue, to make it meaningful.

No exaggeration -- Autistic people often don't need the exaggeration to get your point, because they take everything at face value, and very literally. They either "get it" or they don't. Exaggeration only works if you explain your comment as being a metaphor or exaggeration up front.

For instance, when a child says; "I hate you!" when you insist on a chore, you don't take it personal (hopefully.) You know it is just an immature way of exaggerating a point that they are trying to make (extreme frustration.) However, saying a similar thing to an Autistic person will tend to backfire, since it is often used in a very heated, emotional exchange, and this is when the Autistic person is at their worst in decoding what is happening in their world socially.

No Double-Meanings -- Often someone will ask a question or bring up a topic to get a completely different point across. For instance; imagine if you went to visit a friend on the spur of the moment, and they made a comment like: "Gee, I hate it when my relatives drop in unexpectedly without calling first." You might call before coming over the next time. An Autistic person would not get the hint, no matter how obvious it was, because they aren't ever looking for hints, unless they have been specifically taught this, and were calm enough to remember to do it in a variety of social settings.

Of course, all these things listed above are the perfect material for comedians, comedy shows, and close friends who already have their personal vocabularies, and social styles memorized. These are the social things that make life interesting. However, in reality, they are much more fun to watch ("I Love Lucy" or "The Simpsons" comes to mind) than to experience in your own family life.

In fact, all of the above things are what constitutes "drama" in relationships. In a boring relationship, it might spice things up, but a steady diet of drama can deteriorate a relationship when one or both of the members is under stress, tired, is insecure about the relationship or anxious.

At one point, we put these things into a list that was posted on the wall in our house, until the Autistic person grew older and wiser and we were able to teach some of these things to him in a calm setting. We still have the "No Sarcasm" rule, in our house, but it gets broken regularly, when we are having fun on a playful, casual, low stress day.


The Mean What You Say part includes:

Never promise what you can't be sure you can deliver. If you are constantly using threats that you can't follow up on, you are eventually going to make whatever you say irrelevant to people.

If you can't be sure, say so. If you don't know the answer, say so.

This removes the verbal/behavioral "static" that people with Autism have a hard time filtering out. For instance, if Dad always says: "If you don't stop horsing around in the car we aren't going to the movie." But then everyone gets upset because the movie was planned for a week as a reward for doing homework, and the family goes to the movie anyway. What Dad says is then "static" -- irrelevant information, that is simply noisy.

Dad could have said that he would stop the car and not move it until everyone was quiet. This might have been more realistic as to what was eventually going to be followed through on.

Choose carefuly what to say so that everything you say has a practical meaning in the real world, with useful information about what is happening or is going to happen.

If you consistently do this, your words will mean more, and matter more to those you speak to. If you do this inconsistently, then people will always be waiting for the next shoe to drop, so to speak. For instance, if you only act when you have first threatened to act for 3 or 4 times, then no one will start listening to you until the 4 th time you say something. If you only get roused enough to interrupt what you are doing when you are yelling at the top of your voice, then no one will start listening to you until you are yelling at the top of your voice.

Consistency.
Be Extremely consistent. If your words reflect your actions accurately, this helps the Autistic person make better choices about what to do and what not to do, when their behavior is within their control.

Live your Values
If you value something, spell it out, write it down, speak it out loud in concrete terms. Be specific. Then live what you have spelled out. This is better than any lecture, or angry diatribe. Discuss values when you are all calm and focused--not when a situation is tense.

Imagine Who You Want to Be, Then Set Your Intention, And Live to What You Want to Be
Don't react. Act.
Be the person you want to be regardless of what is happening around you, to you, or because of you. If you want to be the kind of person who doesn't scream or yell, then don't. Don't let yourself get egged on into being who you are not. Nobody can force you to behave a certain way. If an Autistic person is loosing it, falling to the floor kicking and screaming it is OK to just stand there and wait for it to end. You don't have to yell to show others you are "taking this seriously." If there is nothing you can do about it, then don't make it worse by doing things just to look like you are trying to do something. You don't have to let guilt make you do stuff. Decide that if it is the right thing to do, you will do it, whether you are feeling guilty or not. Decide this ahead of time.

You don't help a person because of who they are, you help a person because of who you are.
Mother Theresa didn't question the dying people she helped to determine if they had led a deserving life first. She had made a decision to help the dying ahead of time, because she felt that no one should die alone--not because of who they were, but because of who she was.

If the person uses this against you, then that is manipulation, and that is a different situation. This is where you set boundaries and are careful who to help and how to help, and for what reasons.

A good resource for dealing with meltdowns is the book:
"Asperger Syndrome and Difficult Moments, Practical Solutions for Tantrums, Rage and Meltdowns" by Brenda Smith Myles, and Jack Southwick

All-purpose flour mix (GFCF)

All-purpose flour mix

Buy some rice flour, tapioca starch and cornstarch (or potato starch)

Mix them in these proportions:

1/2 cup rice flour
1/4 cup tapioca starch
1/4 cup cornstarch or potato starch

Blend and store in the refrigerator and use for any recipe that calls for wheat flour.

Here are some tips for baking with no-wheat flours:
------------------------------------------------------------------------

• Warm up all ingredients to room temperature (for instance the eggs.)
• Use a deep-sided bread pan (3-4 inches high)
• Pre-test your yeast to make sure it is still active before using it.
• Mix the salt into the flour, not directly with the yeast (hurts the yeast)
• Be careful about how much liquid you use, too much and you get a gummy center, too little and it will be crumbly.
• Use a thermometer to check doneness.
• Bread is done when it is 200 degrees inside and sounds hollow when you tap the bottom.
• Remove the loaf from the pan when done and cool it on a rack or it will get soggy.

Eating Gluten-Free Casein-Free on a Budget

For eating gluten-free on a budget, there are nothing like potatoes!

A bag of potatoes can go a long way and there are a million ways to make them! The easiest is to scrub one, poke two holes in the skin and microwave for 4 minutes. Drizzle extra virgin olive oil on it, add a tablespoon of water and some sea salt. Any cooked vegetable is a good topping.

Beans are very inexpensive. Black beans are easy to digest. Beans go very well with rice. To save money, buy a pressure cooker and make beans from a bag according to the directions on the bag. This is a great source of protein, and very inexpensive. If you cook them right, they will digest easily.

Easy Bean Recipe:
Mash up a cup or two of the cooked beans up with a 1/8 cup lemon/lime, several cloves of crushed garlic, 1/4 cup of sesame paste and sea salt for a great pate. Drizzle with olive oil and paprika before serving. (This is usually called hummus if you make it with chick peas.)

Now that its summer, try going to a Farmer's Market in your area and get just about anything there. The cost is often lower because you are cutting out the grocer. The seller's often have great suggestions and recipes for cooking their produce. Buying locally is also good for the environment, and you get to meet the people who grew your food!

Get an air popcorn popper. (See my previous posting on air popcorn poppers, Friday, July 25, 2008.)

Popcorn is very cheap and you can buy it in bulk, organic, and have it for snacks. Some celiacs can't eat fibery stuff, so be careful that this is something your system can handle.

Sprout mixes are very inexpensive. Making sprouts is easy and cheap!

One of the most inexpensive and versatile vegetables is red or green cabbage. Cabbage keeps a long time in the refrigerator, and is a great flavor enhancer. Sliced thin and mixed with shredded carrots and your favorite salad dressing it makes a nice summer cole slaw. Add a few leaves of cabbage chopped up into any soup or stew for a much fuller flavor. It seems to make everything more savory and more satisfying. Just don't overcook it or it can turn to mush!

Try getting any fruit, or berries in season and making smoothies with them, just put them in a blender with some ice and some rice milk, and add some honey or real maple syrup for sweetness.

Don't forget that nuts, seeds and nut butters are good sources of protein! Make sure they are very fresh. Nuts can go rancid easily.

We have a bowl of cherries on the table right now, next to a bowl of cashews. I slice a sweet red pepper crosswise (the slices look like a flower) and put on a plate with some black olives. It is the best junk food!

Sauteed mushrooms have a savory taste that makes anything have a meaty flavor.

Inexpensive Vegetable Stew:
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Take all your current vegetables (include an onion or a leek, and a stalk of celery with tops, and a leaf or two of cabbage for flavor) and some potatoes and saute them a little in some olive oil, or roast them in the oven. Cut everything up into chunks before beginning, sautee the harder vegetables first or roast them longer. Start a 1/2 large pot of boiling water. Add a can of black beans. Add the vegetablesand some fresh garlic. Throw in a handful of carrot tops, a few beet tops, some kale or other greens at the last minute. Add some Sea Salt, pepper. Cook until everything is done about 15 minutes. Serve in a bowl with a little gluten-free mayonnaise on top for a garnish.

Don't forget that most Chinese, Japanese, Thai, and Indian foods are mainly gluten-free. Mexican is gluten-free if you get the corn tortillas instead of the flour. You have to call ahead, or call the manufacturer to be certain that there are no additives that contain gluten, however.

Really cheap shopping list:
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A bag of black beans.
A bag of popcorn.
A sack of potatoes.
A head of red cabbage.
A clump of carrots with tops on.
A bunch of celery.
A head of garlic.
A container of lemon juice.
Iodized Sea Salt.
A can of mixed nuts.
Some honey or real maple syrup.
Extra Virgin olive oil.
The freshest fruit in season.
Any favorite vegetable.

Diction SOS - Teaching an Autistic Person Language and Reading

Diction SOS

When my son was still learning to talk, with only a single word or two, (about age 4) we discovered he was totally fascinated by the alphabet. He couldn't talk, but he did learn the alphabet, and became obsessed with it. Sometimes, we heard, this can be an indication of "Hyperlexia" which is a form of language disorder, but not necessarily Autism, although apparently Autistic persons can have it.

A friend of mine had a son who had lost all his hearing due to an infection. They mortgaged their home to purchase a cochlear implant for him. The cochlear implant people recommended a rehabilitation program for him that included The Association Method for teaching children with language deficiencies. She taught me this method, and I used some of it in teaching my son language. He not only learned to talk better with this, but he also learned to read at the same time. (To this day, he has perfect diction, I think in part because when he was having trouble saying a word we could put it on a card using the phenomes and umlauts and then he would be able to "get it.") He wasn't always understanding what he read, but he at least had learned "the code" of language this way, by memorizing it. To him it was just a puzzle, or a code, not useful for anything yet, but at least we had sort of a "morse code" to start with in reaching him.

Here is a reference to a curriculum that includes this method:

TLDC: Teaching Language-Deficient Children
http://www.proedinc.com/customer/ProductView.aspix?ID=3921

"Theory and Application of the Association Method for Multisensory Teaching"

The gist of this method was putting the 42 English phonemes onto flash cards (umlauts and all) and having him memorize them. He was delighted to learn this "secret code" and thought it was fun. Then we taught him to read by using cursive, color, patterns, and visual repetition.

An Autistic person often can't see what a word unit is because they persist in seeing each individual letter as unique, and not a part of a whole. So by using cursive, the letters of each word are connected and only have a space between each word. The cursive style did not take any extra effort to teach him. It seemed easy for him to read the cursive part. He loved knowing where a word began and ended, and this made it much easier for him to sound out the word. We used different colors to differentiate sounds at first, and then used a different color for each word when doing sentences.

When doing words on a page, we let him pick the colors of bright markers, and wrote them in patterns on a plain peice of paper, for instance in a star pattern, or a step pattern, or in some set of circles, with about 4 repetitions to each page. Then we would point to each "step on the ladder" and say the word together. This made reading much more fun, and he loved the "patterns." We later did the same thing with short sentences, with about 4 - 5 repetitions in different colors on a page. It looked like story diagramming, but with the same sentence repeated instead of different concepts at different positions on the diagram. Each time we did this pointing and saying the sentence. Each word or sentence took about 15 repetitions, over short periods of a few minutes at a time, and perhaps taking a week to finish for him to learn it. Sometimes we put a coin, or a tiny sweet down on each word as we were pointing to it, which he could keep.

I also put words for common things around the house onto flash cards and taped them to the object they named. There was the word "Window" on all of our windows, and "Door" on all of our doors, for instance. I didn't do this all at once, a few items at a time, so he wouldn't get overwhelmed. Sometimes we would go on a treasure hunt and find all the window cards, then take them for a "prize" from the prize box. Then I would put up a different set of cards, like "mirror" for all the mirrors, and "phone" for all the phones.

Getting Enough Sleep for Someone With Autism

Here is another simple remedy for sleeplessness in persons with Autism:

Melatonin

Melatonin is very safe, and actually has some health benefits. Children tolerate it well with few side effects. It sometimes causes grogginess the next morning, but this can be remedied by cutting the usual dose in half.

The tablets generally come in 3 mg doses, which is more than enough for an adult. You can also purchase 1.5 mg doses, but it is a little harder to find this package. Cutting the pill or using half a capsule works fine.

Extended release Melatonin is available, and works well, but is usually a little more expensive. Give the child the dose 20 - 30 minutes before the desired bedtime. Lately, we have been giving it about an hour before bedtime, to avoid the morning grogginess.

It is non-narcotic, (not habit-forming--non addictive) and is available over the counter without a prescription at most regular pharmacies. This will not be like a regular sedative, it doesn't work the same way. It does not prevent the child from awakening to use the bathroom (if he/she is toilet trained.)

My son is very picky about what he will eat or put into his mouth--(well at least food anyway!) and I was worried that he would refuse to take the Melatonin. But after coaxing the first pill into him and a good night's sleep, he accepted the next night's pill easily and now just puts it in his mouth and chews it. As a teen, he sometimes even reminds me that he needs to take one! He used to have dark circles under his eyes all the time, and with a regular good night's sleep he doesn't have this anymore.

So what is Melatonin?
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Melatonin is a hormone made by a part of the brain called the pineal gland. Melatonin may help our bodies know when it's time to go to sleep and when it's time to wake up. There are two types of melatonin that may be used in the pills: natural and synthetic (man-made). Natural melatonin is made from the pineal gland of animals. This form could be contaminated with a virus and is therefore not recommended. The synthetic form of melatonin does not carry this risk. If you are not sure if your melatonin is natural or synthetic, ask your doctor or pharmacist before taking it.

Research has shown the effectiveness of Melatonin for this use, and also for use in treating jet lag.


Melatonin Deficiency
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"Significant reductions in overall melatonin levels have been seen in Autistic Spectrum Disorders, and disturbed melatonin regulation may underlie sleep disturbances seen in many ASD subjects."

~"Autism, Brain, and Environment" by Richard Lathe 2006