Wednesday, May 29, 2013


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.


Saturday, May 25, 2013

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.

.

Tuesday, January 22, 2013

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.