Autism questions and answers

Parent to Parent: this is advice I would give you if you were sitting across my kitchen table from me, telling me that your child had just been diagnosed with autism. Although I'm not an expert, I've learned a lot in the last six and a half years, and what I've learned most is this: we parents' are each other's best resource.

What can I do right now to help my child?

1. Don't wait. Originally I was told I had about a three-year window to save Sam's mind, that after he turned five, any intervention would be pointless. I don't buy that anymore, I think children can always improve, but I do believe the sooner you start, the sooner you will have your child back.
2. Get a DAN! practitioner (doctor, naturopath, whatever is available in your area): Find a local DAN! physician, one who has been trained in the Defeat Autism Now! biomedical approach to treatment. Here's a link to doctors who have been trained in the Defeat Autism Now! medical approach. While DAN! docs are great, and the best option, they are not infallible. You still need to trust your instincts. You know your child better than anyone. I worked with two DAN! doctors who were great, and found a third and fourth I liked even better.
3. Connect with your local Autism Society of America Chapter for resources, recommendations.
4. Clean up your child's diet: no artificial colors and flavors, no junk food. Natural and organic is best.
5. Try these supplements: Almost all kids will do better with proper vitamins and minerals. If it takes you a while to get into see a DAN! doctor, try supplementing with pure fish oil, calcium and zinc, and buffered vitamin C. Some kids have had remarkable results from pure fish oil alone. And a multivitamin with good B6 and B12 that's absorbable (consult with a natural vitamin specialist) is also a great idea. Don't worry if the DAN! doc scolds you for starting without them. They'll complain that the tests they want to run won't be as telling if your child is already starting to improve. So? Our children are not their lab rats. Do what you can do now to help your child.
6. Get the best water filter you can afford, and use it for everything: boiling gluten-free pasta, washing fruit, brushing teeth. And speaking of teeth, get a fluoride-free toothpaste. The less chemicals you put in your child, the better, and there is some evidence that fluoride is harmful and in fact does not prevent tooth decay!
7. Don't allow a dentist to put amalgam fillings in your child. They contain mercury, and chances are very good that your child has more than their share of mercury already. Ask for porcelain or a non-mercury composite instead.
8. Get your child at least one hour per day of fresh air and sunshine (even if it's raining). This was a recommendation by my son's first naturopath, who said that one hour a day should be considered a minimum.
9. Join a local parent's support group for kids on the autism spectrum. This can cut your learning curve by 90%.
10. Go GFCF: While you are waiting for your appointment with your DAN! doctor, start the gluten-free, casein-free diet (also eliminate soy which is usually a problem as well). I have no patience for parents who say the GFCF diet is too hard. "Too hard" is having to take care of your child for the rest of his/her life because you couldn't be bothered to make dietary changes. With all the options we have available today, there is no excuse not to give the GFCF diet a solid six- to nine-month trial. This means NO infractions during that time.
    
11. Get on the waiting list for the best ABA, Floor Time or Direct Instruction, Sensory Integration or RDI (relationship developmental intervention) practitioner in your area. Ask around. It could take six months or longer for the best ones (it did for me), so get on the waiting list now. I used all of these therapies with Sam at one point or another, and they all have their place. The important thing is to get the right practitioner, whichever therapy you use. We were lucky to have had truly wonderful help in all methods. Our speech therapist (private, in-home, out-of-pocket-and-not-cheap-but-worth-every-penny-speech therapist) was trained in Floor Time and it was amazing what a difference that made. A bonus of using the best available: they know the best ones in other disciplines and can recommend them. We learned about our speech therapist (who used Floor Time) from an ABA therapy team we hired.
12. Know that, chances are, your insurance won't cover any of this. Do it anyway.
    
    

What is the gluten-free, casein-free diet?

Gluten is a sticky protein found in wheat, oats, barley and rye (and spelt: don't make the same mistake I did there!) but not in corn, rice, millet, buckwheat (at least not the same type of gluten). Casein is the protein in milk: cow milk, goat milk, yogurt, cheese, ice cream. The GFCF diet eliminates these common allergens, the proteins of which can cause opiate-like behavior (a spaced out stare, lack of focus) in our children on the spectrum. Remember, soy is a problem for a lot of these kids too, don't take them out of the frying pan and put them into the fire. Eliminate soy until you know it's safe. And note that most soy sauce has wheat in it.

Does the gluten-free, casein-free diet work?

I can only tell you that it did for my child. Sam hadn't spoken for 11 months and within three days of taking him off wheat and dairy, he begain to speak. Haltingly at first. Sometimes now, he never shuts up! :) An early speech therapist Sam worked with saw him before the diet and 10 days after starting the diet. She said, shocked, "What did you do? He's attending to me. He's focusing. He's responding." I told her about the diet. She'd not heard of it but she said, "keep it up." Here's a great site about the gluten-free, casein-free diet. Also see the recommended books, Children with Starving Brains and Special Diets for Special Kids in my "Autism Resources" page. Jacqueline McCandless, author of Children with Starving Brains, is a DAN! practitioner and helps treat children with autism. She won't even accept a patient unless they are on the GFCF diet. Although I credit ABA and Floor Time for bringing Sam back to us, he would not have been able to do either without the GFCF diet, and appropriate nutritional supplementation.

What will I feed my child?

We are so lucky to live in this time because there are so many options available. Almond milk and rice milk make great substitutes for cow milk. Many grocery stores now have a whole aisles of gluten-free options: breads, crackers, pasta (corn, rice and quinoa), pretzels and cookies. Be sure to avoid casein as well and soy until your child has been tested for allergies. And, sorry to say, peanuts. Peanut and soy beans are very much alike. If your child likes peanut butter, consider substituting with almond butter, hazelnut butter, cashew butter. Here's one of Sam's favorite gluten-free recipes (and his brother Max, not on the spectrum, loves it too)!:

GFCF Chicken Nuggets

2 boneless, skinless chicken breasts (preferably organic)
3/4 cup Ener-g Rice Mix
1/2 tsp. gluten-free garlic powder
2 eggs (or use Ener-G Egg Replacer)
2 cups olive oil
Gluten-free garlic salt (to sprinkle on after cooking)

Heat oil in deep pan on stove at medium heat. Cut chicken into nugget-size pieces. Mix rice mix and garlic powder in a bowl. In another bowl, beat two eggs well. Dip chicken pieces in egg then rice mixture, then drop into heated oil. Try one nugget first. If it doesn't begin sizzling, oil may not be hot enough yet. Cook nuggets in oil until done inside (approx 7 minutes, more or less depending on how big you've cut them). Drain on paper towels and sprinkle with garlic salt. Serve with organic baked french fries (or deep-fry the fries as well).

A great site for finding delicious gluten-free options is Kinninickinick. Sam loves their GFCF chocolate donuts and plain bagels. And most health-food stores carry Gluten-Free Pantry items, also very good.

Meats, vegetables, and fruits are all gluten-free and casein-free, so your child will not starve. If you feel bad not feeding them pizza (and you can even make or buy gluten-free pizza crusts and put tomato sauce and your own non-cheese toppings on), or want to give them "just a little" so they don't feel deprived, ask yourself this: if gluten is poisoning my child, do I want to give them "just a little" poison?

What is ABA Therapy?

Applied Behavior Analysis is a method of gaining your child's attention to teach them behaviors: how to ask for what they want nicely, how to learn, how to respond. When the first ABA therapist came to my home for a consultation, an angel named Lisa, I asked her what her approach was. She said she'd have Sam sit at a table, and she'd work wtih him there, they'd take fun breaks, then go back to the table, etc. I thought, "What? Sam? SIT??? At a TABLE??? No way"! I told her it wasn't possible. He was 2 and a half, and he didn't sit still. Lisa camly said, "Well, that's the first thing we'll have to work on."

The first session was a nightmare. Lisa sat close enough to Sam that she could wrap her legs around the legs of his chair. She spoke to him in a fun but firm voice. He squirmed, he tantrummed, but he wasn't going anywhere. So he threw up. Lisa had warned me not to react no matter what he tried. I calmly cleaned up the mess and they started again. He threw up again. I had to leave the room. If you try ABA, at first, you may think you're being cruel. Every fiber of your being will want to comfort your child, take them out of the situation that's bothering them. Just remember, you're fighting for their mind. It's a race you must win.

Within two weeks, Lisa had Sam saying his ABCs, picking colors, using flash cards. I wouldn't say he loved the work he did with her, but there were times he did enjoy it tremendously. She used animation, tickling, funny sounds, games and deep pressure (coccooning him in a blanket). We'd swing him, rock him, reward him with food. I credit Lisa for saving Sam's mind. I will be forever grateful to her.

What is Floor Time?

Floor Time is another method of gaining the child's attention, but it's a gentler approach than ABA. Rather than make the child do what you want, you follow the child, and do what they do, then give it meaning. For instance, Alison, our speech therapist did Floor Time with Sam. Sam would spin in circles so she'd spin in circles, and she'd say,"Whee! I'm spinning! Spinning is fun!" After a while, he'd notice, and she'd add something to the play: "Hey, let's spin then jump!" So she would. Then Sam would jump. If he switched and went back to spinning, she would too.

Alison brought a bag of tricks with her, engaging fun toys he'd never seen. She'd take one out and begin playing with it. Soon Sam would become interested. She remained fun, and eventually he came to see her as someone he wanted to engage with. A great example of Floor Time thinking is, Sam had a book that he would get stuck on a specific page. I would read the story, and he would never want me to turn beyond a specific page. It was frustrating to me because I was trying to finish the story. Alison recommended I stay with the page, talk about what's happening on the page as long as Sam wanted to. She told me that there was obviously something on the page that Sam was trying to process. It seems stupid that I didn't think of it before, but I didn't. It made all the difference. After a while, Sam was able to go through the rest of the book. A few times after that he'd stay with the page, but we'd talk about it, and then he could move on more quickly.

Alison also taught me how to draw speech out of Sam. I told her about a time that I was in my office and I heard Sam open the refrigerator door and say "Unh." I came out to see what he wanted. He was trying to get a hot dog. I said, "Oh, you want a hot dog Sam." He looked at me expectantly. I made him one, and he ate it. Alison said that next time I could use that as an opportunity. Rather than fill in the blanks for Sam, make him do it. If he stood at the refrigerator and said "Unh" and I wasn't in the room, he should have to come and get me. I could "happen by" the kitchen, not paying attention to him, on an "errand" if I didn't think he'd come as far as my office. But I needed to make him use the language. I needed to play stupid when he brought me to the refrigerator and pushed me toward it. "What? You want some water? A pickle?" and make him say, "No, hotdog." Then, although I know he wanted ketchup, I would try mustard and make him tell me no. Then I would try to make the ketchup pour without taking the lid off. All of these would be opportunities for Sam to exchange, to communicate with me. To draw him out. Someone wise once told me that just because something hurts doesn't mean it does harm. And that a lot of times being "nice" to someone actually does harm. As a mom, I wanted to give Sam what he wanted, a hotdog with ketchup. But what Sam NEEDED was an opportunity to communicate. He can't go through his life saying "unh" from a distance and expecting the rest of the world to fill in the gaps.

I learned from Alison that sometimes I had to stop thinking like a mom, and start thinking like a therapist. It was hard, God it was hard. But the rewards are worth it.

Do you have questions?