Thursday, December 5, 2019

Autistic History: Autism Science Foundation

Autism Science Foundation (ASF) is a non profit organization that supports research into autism. ASF was started in April of 2009 by Allison Singer. She was a prior senior executive of Autism Speaks. She was also a member of of the Interagency Autism Coordinating Committee (post coming later). Her cofounder was Karen Margulis London. Margulis was also the co founder of the National Alliance for Autism Research(NAAR) (post coming later). Both Singer and London are parents of autistic children.

ASF was a created as a result of a split from Autism Speaks. At the time, Autism Speaks had vaccine research a high priority. This priority raised concerns with parents and researchers.

Alison Singer, who was senior executive at the time, resigned in January 2009. She did this so she would not have to vote for committing money to new research studies in vaccines and autism. The US  Interagency Autism Coordinating Committee voted against funding.

"There isn't an unlimited pot of money, and every dollar spent looking where we know the answer isn't is one less dollar we have to spend where we might find new answers. The fact is that vaccines save lives, they don't cause autism."

 Later that year with NAAR's co found Karen London, Singer established ASF as a non profit charity supporting autism research. The main belief is that autism is strongly genetic and vaccines do not cause autism. They believe that early detection and intervention are critical.

ASF supports the International Meeting for Autism Research (IMFAR post will be coming) and has interviewed researchers at this event. ASF offers grants to IMFAR for autistic people and their families so they can attend. They also fun pre and post doctoral researchers.

In 2019, Alison Singer annoucned she had founded the National Council on Severe Autism.   

Dr. Paul Offit , a founding board member, donates all his royalties from his books Deadly Choices and Autism's False Prophets to ASF.     

ASF has won GuideStar's award for being a "Shining Star to those interested in real science and evidence based interventions."

Why Autistics Do Not Like Autism Science Foundation

There are no autistics on the board. They do not consult autistics on what we want. We do not want a cure. We do not want early intervention or ABA. We want to be accepted and these people just are not listening. The only good thing about ASF is that they do not say autism is caused by vaccines. That is it. They could be really helping people but instead they are concentrating on wiping us from the planet. 

Friday, November 29, 2019

Quackery Exposed: Gluten Free/Casein Free Diet

Disclaimer: If you have a legitimate medical condition or allergy that prohibits you from eating casein or gluten, this is not directed at you. This is about the restrictive diet marketed to parents of autistic children.

Gluten Free, Casein free diet is a restrictive diets that pseudoscience says will "make autism better." To me it says they want to make children appear neurotypical. It is often called GF/CF diet. In this restrictive diet, foods that contain gluten (breads and cereals) and casein (dairy products) are eliminated. They claim that eliminating gluten and casein may help lessen autistic behaviors and difficulty with autistic people. You cannot change neurology by changing the child or adult's diet to being more restrictive!

Organizations that Support this Quack Diet:

Autism Speaks explains it in their 100 Day Kit

The Quack Diet

There have not been one scientific study proving the effectiveness of this. This is the neurotypicals trying to cure us of our neurology. They never asked an autistic person what they thought.

By putting a child on this diet, there are nutrients lacking in the food they eat. They are:

  • Calcium
  • Fiber
  • Vitamins A, D and B complex
  • Calories

The foods that that contain gluten are :

  • Abyssinian hard wheat
  • barley
  • barley flour
  • barley malt
  • barley hardeum vulgare
  • Bleached all purpose flour
  • bran
  • Bread flour
  • brown flour
  • Durum flour
  • enriched flour
  • Fu (dried wheat gluten)
  • Gluten flour
  • Graham flour
  • Granary flour
  • Hard wheat
  • High protien flour
  • High gluten flour
  • Kamut wheat
  • Oat flour
  • Rye
  • Spelt
  • Wheat
  • Wheat flour
  • White flour
  • Whole meal flour
  • Vital gluten
  • Alcoholic beverages
  • Avena
  • Beer
  • Bouillon cubes or powder
  • Bread crumbs
  • Bulgur (bulgur wheat/nuts)
  • Broth (packaged)
  • Cereal extract
  • Cereal binder
  • Chilton
  • Couscous
  • Cracker meal
  • Croutons
  • Dextrin
  • Durum
  • Edible starch
  • Einkorn wheat
  • Filler
  • Galactose
  • Ghee
  • Glutamate
  • Glutamic acid
  • Gravy cubes
  • Gravy mixes (unless homemade with cornstarch)
  • Herbs with wheat fillers
  • Hordeum
  • Hydrolyzed oat starch
  • Hydrolyzed plant protein (HPP)
  • Hydrolyzed vegetable protein (HVP)
  • Malt
  • Non-dairy creamer (coffee creamer)
  • Oats
  • Pearl barley (Job's Tears)
  • Nougat
  • Seitan
  • Simplesse
  • Semolina
  • Soba noodles
  • Teriyaki sauce
  • Triticale
  • Udon
  • Vegetable starch
  • Baking powder
  • Baking soda
  • Chorizo sausage
  • Gelatinized starch
  • Ground spices
  • Hot dogs
  • Lactic acid
  • Luncheon meats
  • Modified food starch
  • Natural flavoring
  • Sausages
  • Soy sauce (shoyu)
  • Surimi
  • Miso
  • Monosodium glutamate
  • MSG
  • Rice malt
  • Rice syrup
  • Vitamins

Foods that Contain Casein

  • Acidophilus milk
  • Buttermilk
  • Condensed milk
  • Evaporated milk
  • Dry milk
  • Goat milk
  • Low fat milk
  • Malted milk
  • Milk chocolate
  • Milk powder
  • Milk solids
  • Non-fat milk
  • Powdered milk
  • Skim milk
  • Whole milk

Other sources of casein:
  • Artificial butter flavor
  • Butter
  • Butter fat
  • Butter flavoring
  • Butter oil
  • Caseinate
  • Cheese (hard and soft)
  • Cottage cheese
  • Cream
  • Cream cheese
  • Custard
  • Curds
  • Delactosed whey
  • Half and half
  • Ice cream
  • Lactoglobulin
  • Lactose
  • Lactalbumin
  • Lactate solids
  • Lactulose
  • Pudding
  • Rennet casein
  • Ricotta cheese
  • Sherbet
  • Sour cream
  • Sour cream solids
  • Whey
  • Yogurt

These foods may contain casein.
If the item is not labeled GF/CF, check with the manufacturer.
  • Brown sugar flavoring
  • Bavarian cream flavoring
  • Caramel coloring
  • Chorizo
  • Coconut flavoring
  • Hot dogs
  • Luncheon meats
  • Natural chocolate flavoring
  • Sausages


Many foods do not contain gluten or casein, such as:
  • chicken, fish, meat
  • fruits, vegetables
  • potatoes, rice, infant rice cereal
  • cereal and pasta labeled "gluten-free"
  • Guten-free flours:
  • Amaranth flour
  • Buckwheat flour
  • Corn meal flour (and polenta)
  • Garbanzo bean flour
  • Garfava flour
  • Lentil flour
  • Millet flour
  • Nut flours (such as almond, cashew)
  • Potato starch flour
  • Potato flour
  • Quinoa flour
  • Rice flour (brown or white)
  • Sorghum flour (Jowar)
  • Sweet potato flour
  • Tapioca flour or tapioca starch
  • Teff flour
  • Yucca (cassava flour)
  • Milk substitutes:
  • Almond milk
  • DariFree® potato milk
  • Rice milk
  • Soy milk
  • Butter substitutes:
  • Use non-dairy margarine such as:
  • Hains® safflower margarine
  • Mazola® unsalted corn margarine
  • Willow Run® margarine

Non Food products Must be Gluten and Casen Free TOO!

Contains glutenGluten-free
Lip balmBurt's Bees®
Laundry detergent
Arm and Hammer® Baking
Soda detergent
Soap, shampoo
Johnson & Johnson®
Sensitive body wash
Spices (ground)McCormick's®
SunscreenBanana Boat® Children's
ToothpasteTom's Toothpaste of Maine®

This diet even prohibits licking stamps and envelopes because they contain gluten. They cannot have stickers because they contain gluten. Antibiotics and other medications are on the restricted list as well.  They want separated appliances. This is almost like an orthodox level Kosher  but much more restrictive 

Wednesday, November 27, 2019

Autistic Adults do have empathy. Raw Emotions of an autistic reporter.

As I write this, I am processing yet another report on child abuse. People look at me and think I am such a strong person for reporting abuse. It affects me EVERY SINGLE TIME. Every time I see a mother worried about her child because they are having side effects from MMS bleach or another child shedding lining of his intestines due to being given unregulated chelation substances. Both are very dangerous and FDA has issued warnings against.

Today, I came across a lady who was giving chelating agents to her son. This is a substance that is easily gotten on the internet. Almost no effort for something so dangerous. She was bragging that her son was shedding lining in his diaper. Not for a moment did she ever think about what she was doing to her child.

Let me walk you through what I go through when I make a CPS call to protect the children whose parents, who are supposed to protect them, poison them instead. Instead of listening to medical professionals, they listen to strangers on the internet.

When I first see evidence of abuse, I get angry. As I get angry, I use that anger to gather what I need to give to the authorities. I had issues having kids. I get so pissed that these people are able to have kids so easily. They do not thank whoever they believe in that they have children at all. I relive the heartache of still birth and miscarriage every time.

Then I become sad. This usually happens after I make the report. When reporting I get so caught up in my anger. I think I do not want myself to be vulnerable. I become sad for the child. They are subjected to adults who cannot respect the child as a person. They do anything they can think of to cure their babies instead of embracing them for who they are. The sadness usually lasts a little while. This is until I see the next instance of child abuse then the cycle continues.

I wrote this out, not to trigger anyone but to have a window into what a CPS reporter feels every single time. It is not something we take lightly. It is an emotional burden each time BUT I will never stop reporting until abuse stops.

Autistic History: Autism Hope Alliance

Autism Hope Alliance is a Florida based charity that has been established in 2008. It was founded by Tom Bohager. He holds a bachelors degree in holistic nutrition. He has written two books. They are Everything You Need to Know About Enzymes and Enzymes: What the Experts Know.

Since the Organization's Inception, they have been involved with over 30,000 families. They promote "alternative treatments" for autistic children.

They push quack diets, such as Gluten Free and Casin Free diets, MAPS, hyperbaric oxygen chambers, detoxification, chelation and many other quack treatments. They do not outwardly promote MMS but they do everything else. It would not surprise me if they did.

They partner up with different food companies and call the foods "autism approved." They brag that they are the first charity to successfully enter the natural foods industry. I do not think my autism approved any of these foods. That's only if we can say it is separate from myself, which it is not. Restricting foods does not make anyone any "less autistic." The premise of this idea is ridiculous. We just want to eat what we like, baring any type of intolerance or allergy.

The list of partners will tell you all you need to know about what their mission is. Personally, I buy NOTHING on this list. Their partners can be found here so you know who to avoid:

Not only are they pushing all these harmful treatments BUT they are also working with JB Handley. My friend Eve created this video explaining it:

This organization does not have much publicity. This is what makes them so dangerous. Please do not fall for their tactics. Stay far away. If you want to learn how to help autistic people, ask autistic people.

Tuesday, November 19, 2019

One Autistic Scout Defying other Leaders Doubts

My son who is 10 years old is autistic and has been a scout since he was six years old. He was semi verbal until he was really involved with scouts. Most of my readers know I sing the praises of Boy Scouts of America for autistic children.

This past weekend was an event called Scout Advancement Weekend (SAW). This was for Weblos, Arrow of Lights and Scouts BSA to earn pins or merit badges in one weekend. It includes camping with other units from the council.

When signing up for this event last month, one leader who is our advancement chair, did not want my son to go to SAW. Her reasoning was that he might get upset and no one would know how to calm him. I was there with my girl's troop. I was the next camp site over and I had to stop over to give him his medication twice a day. The committee chair was not worried at all. I sent him to prove of all the nay sayers wrong and I am so glad I did.

I was the typical nervous cub mom. I never had my kids camping without me. I was always the leader but this was a first for me. My son had been in scouts with his friends and leaders since Tigers so logically I knew he would be fine. Emotionally, I was a nervous wreck.

He rode up to the camp with me and the older scouts. Cub scouts met at the camp on Friday night. Before driving up, we met the rest of the boy and girl troop. He was able to eat pizza with the older scouts, which he loved. It gave him more exposure to the troop procedures so he is better prepared for next year. The older boys and girls were so welcoming. We have the best troop, so it does not surprise me. The girls and boys troop are separate troops but they act like one. Its nice.

After we arrived at camp, I was able to find both camp sites. Since I was at camp, I was responsible for his medication, which was fine. All kids get medication at the same time. I just had to go hunting for my youngest there. The advancement chair has a loud mouth, so they were easy to find.

I had to leave him with his leaders and friends. I had no choice but to trust him with his physical and mental well being.

I have to admit, they were amazing with him. The advancement chair was staff for the event so she was not in contact with him that much. That I was thankful for. because while I was at woodbadge she thought it was appropriate to scream in his face during a meltdown. He forgave her, but I didn't. She has known him from preschool. There was no excuse.

The committee chair sent me a photo, the one above, of him climbing a wall with his other cub scouts cheering him on. I was told he had no fear and no hesitation. He just did it. He has been working on his coordination and upper body strength. I was crying happy tears. Was so proud of him.

Every time I went to go check on him, he was with his friends having a fabulous time. Not one shutdown, not one meltdown, not one episode of anxiety.

When I went to give him his medicine on Saturday night, one cub scout from another pack said "oh you are on medication, are you hyper or something?" He was really talking down to my son. The other cub scout from my son's pack all chimed in on how amazing he did that weekend. Really shut him up. I could not be more proud of the other cub scouts in the pack. I am a den leader for the scouts too young to be at this event. I have known these other scouts for years. My son was smiling from ear to ear. This is what scouts is about, standing up for what is right and knowing how to advocate effectively.

This was a really positive experience for him and I am really happy I did not listen to negative people. Trust your instincts. You know your child but you have to let go a little bit so they can soar. He is going to be an eagle scout before I know it.

Friday, November 8, 2019

Strong Overwhelming feelings in autistics

When really strong and overwhelming feelings happen, it can be extremely overwhelming, especially for autistic people. I will explain what happened to me today. Its nothing bad, I promise.

Today I had a meeting with our Rabbi and Cantor. Three of our children came to us later in life. They are my husbands siblings. His sister who is 13 is being bat mitzvahed next month. The three siblings have to be officially converted before the bat mitzvah.

This meeting was to explain to all the kids about what was going to happen. This ritual is called a Mikvah. It is a Jewish ritual bath. It has to be done in free flowing water. What better place than the beach in South Florida?

After all the kids got their giggles out, the Rabbi shows the kids a shofar. A shofar is a rams horn that has the tip cut off so it can be blown. It has a deep, loud sound.  Its used during high holy days. He has them close their eyes while he holds it.

Then he caught my youngest bio son opening his eyes before Rabbi was ready. He was teasing him. Then everyone closed their eyes.

Then the Rabbi exclaims excitedly "This is the new Seigler Family shofar." Those who aren't Jewish don't know what a big deal this is.

The kid were excited and they were each able to try to blow it. All three of my biological sons were able to do it. To this DAY I am not.  My husband who ISN'T Jewish was able to do it.

When he said it belonged to us, I was overwhelmed by emotion. I was not able to say anything. The feeling were gratitude, surprise, shock, and guilt all rolled into one. Gratitude was because I knew I would never be able to buy one. Surprise because we would never expect this. Shock was because I was thinking other families are more deserving. Guilt is because I always feel guilty when people give us things that are worth something.

I know neurotypical people can process these feelings a lot easier than we can. It is very difficult. I am verbal but speech escaped me for a little while. He knows the family is mostly autistic and is very patient with our kids. I have a hard time with really strong emotion. It is almost like a sensory overload in a way. It becomes way too much. It does not have to be bad emotion, just strong emotion.

These shofars are very expensive. Especially since its a Kosher shofar.

I almost went into shut down because it was so overwhelming. The Rabbi knows we do not have a lot of money. This is something I would NEVER be able to buy myself. He tries to help anyway possible and he also knows we will not ask.

Now my oldest son wants to blow the shofar during High Holy Days. He has to be bar mitzvahed first. He has two more years.