Autism spectrum can come with various rewards and challenges. A couple of the more common challenges are elopement (wandering and/or darting away) and special dietary considerations. The following conversation between Ann Millan (author of Autism: Believe in the Future), Todd Baxter  (IT professional, father to three boys on the spectrum and operator of the website www.autismideas.com) and Dr. Stephen Shore  (professor with Asperger's, autism advocate who's website can be found here), takes a brief journey into these two important subjects.

Ann has been a disability advocate for almost forty years at the local, state and federal levels. Succeeding to advocate for everyone’s child but her own, Ann took control of Robin’s life as her case manager when Robin was ten years old. Ann’s says her biggest challenge and reward has been homeschooling. She did this for five years, which included supplementing with intense therapies and community social activities. Robin advanced during that time from pre-kindergarten to six grade level in testing.

Ann has been president or board member of many disability councils and organizations, focusing on parent education and creating programs to benefit individuals with developmental disabilities. She knows first-hand the importance of self-confidence and determination to make the right decisions for your child and then find quality professionals to help you.

Dr. Stephen completed his doctoral dissertation at Boston University focused on matching best practice to the needs of people on the autism spectrum. Click here to see an abstract of the dissertation. Dr. Shore has accepted a professorship at Adelphi University teaching courses in special education and autism.

In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and the critically acclaimed Understanding Autism for Dummies.

President emeritus of the Asperger’s Association of New England, Dr. Shore serves on the Interagency Autism Coordinating Committee, for the Board of Directors for Autism Society of America, Unlocking Autism, MAAP, the College Internship Program, and USAAA.

It is our hope that the following conversation will be of some assistance to parents, educators and advocates regarding the issues of elopement and diet.

Kathleen Tehrani: Welcome Todd, Ann and Stephen. Ann had a few base line questions to ask Todd before we get started.

Ann Millan: Todd, can you share with us your elopement issues and why you think your son elopes. Can you categorize as:  escaping something, quest (finding/looking) or just wandering?

Todd Baxter: hmmm , well all of my sons are somewhere on the spectrum. My middle son is the one we worry the most about with wandering. Its mostly figuring out how he will try to escape. He doesn’t have an understanding of what can and can not hurt him.

We are really not sure why he evens does it. I keep lots of notes about things looking for patterns but cant find any, he just does it at times I guess.

Stephen Shore: It’s good that you are talking notes.  The cause may be something that hasn’t even occurred to you.  It may even be something sensorially-related that most people don’t perceive.

Ann Millan: I agree Stephen. Todd, can you connect it with 1) before a meal or 2) after a meal or morning, afternoon, or night. How about when he's more tired than other times?  Oh, how old is he?

Todd Baxter: He is 7.  Most of the times of his escapes have been while I have been sleeping, so at night.

Ann Millan: Oh, so he's a pretty smart kid?

Todd Baxter: Too smart at times. He can figure out things I wouldnt expect someone his age to be able to.

Stephen Shore: Autism and intelligence are not necessarily correlated, and as you suggest, there can be significant abilities in areas standardized testing does not pick up.  

Ann Millan: Let me say some basic things. My daughter was a runner at 2. She ran in circles around the kitchen, dining room, living room and back to the kitchen and repeated until she'd fall. We had a baby safty gate on her bedroom doorway and I'd have to put her in time out. She didn't understand but it was necessary for safety.

As she got older (where your son's at, I used behavior modification. Have you tried any of these techniques?

Oh, she stopped the running at 2 years old when we put her on the Feingold Diet.

Todd Baxter: Give me an example of behavior modication.

Ann Millan: If you've been screaming at him for the wandering out, he may know it does not please you. Instead of verbal reaction, use a charting system and give him a sticker or check mark when he's not running.

You might even want to start this with say, taking a bath, brushing your teeth, dressing yourself. Something positive that he already does well so he will see you recognize something positive and you are pleased. 

Todd Baxter: Charts don’t work; we would have to find something electronic. Things hung on walls don’t stay there long.

Ann Millan: What if all the kids did it?

Todd Baxter: Wouldnt work. We tried the pics charts and all those things.. We dont have anything on our walls anymore.. Either Timmy or tyler rips them down.

Kathleen Tehrani: What do you think about your clicker method Ann? 

 

Todd Baxter: But as far as yelling at them, I dont anymore, that doesnt work either. I tryi to remain calm that does seem to work better. The less reaction I have the less drastic the behavior is.

What is the clicker method?

Ann Millan: Well, that's a big step. I found that out also. I used a clicker (like a cafeteria counter) for Robin when she did things right. She liked to please me. We'd click the number of times she did something in an assignment and then look at the number. She always tried to get a higher number each time. I'm not sure that would work here as a beginning point for eloping. What about diet?

Todd Baxter: hmmm that is a good idea.

Diet, you mean other children actually eat?

Ann Millan: I mean the Feingold diet, for a start - no food colorings, preservatives, like nitrates, MSG, etc. I cannot begin to tell you how much difference that made in Robin. She began to think clearer and running was no longer her goal.

Todd Baxter: I wish we could get him to eat it. What he will eat is very limited.  the old wives tale they will eat if they are hunger doesn’t work with Timmy. He would rather starve unless its one of his foods that is very limited.

We do give him Ensure and kid vitamins because we do worry with his limited diet he is not getting the things he needs.

Kathleen Tehrani: Ann, Timmy is really quite exceptional. His logistical skills are amazing...as well as his ability to figure all sorts of intricate things. Here is an example of interesting climbing skills.    

Ann Millan: But that's not an impossible place to start. Almost any food he likes can be made Feingold friendly. As an example, the snacks he's eating today? He could have Lays potato chips but not chees swirls, probably.

Todd Baxter: He doesnt eat chips.. He does like pretzels though.

Yes he is very good at figuring things out. He makes me scratch my head daily.

Ann Millan: Actually, Todd, diet might be your more major problem than eloping. Feingold is not that difficult today. I fried my own chicken because Robin liked fried chicken - I'd fry 40 chicken legs at a time and freeze them so there was always something in the frig. Today there are Feingold hotdogs in the grocery stores - it's everywhere.

Todd Baxter: But how much more expensive is it than regular foods?

You want to do what ever you can for your children, but you have to be able to afford it too.

Ann Millan: It is not. The Gluten Free Casein Free is expensive but the Feingold is not and I personally think that's a good place to start. You buy Cherrios, for example,  instead of Fruit Loops!

Todd Baxter: That sounds reasonable I will look into this feingold.. The gluten free was too expensive for us.

Kathleen Tehrani: It really does depend on what substitution you try to make doesn't it Ann? The processed snack foods that are GFCF are pricey...but 'real food' alternatives probably are just as cheap if not cheaper.

Ann Millan: You know, the Ensure is expensive. Feingold is just plain basic cooking. You don't use anything you can't pronounce.

Kathleen Tehrani: Right.

 

Todd Baxter: We do try to do most things from scratch.. The hardest meals are his lunches at school.. He wont eat sandwiches.. So we give him fiber bars. He seems to like those.

Ann Millan: Think about it Todd, you don't need to belong to an expensive support group. However, you should get a book from the library. The most critical thing is to keep a diary of his behaviors to help you see "any" difference in him. I really believe the eloping will disappear. He's too old for that. And all those chemicals we eat every day are not good for any of your children. You've got a real handful on your hands.

Kathleen Tehrani: Does he do boiled eggs Todd?

 

Ann Millan: oh, yes.

Todd Baxter: I cant say we have honestly given him a boiled egg, he will eat scrambled.

Kathleen Tehrani: I know folks who just keep a peeled bowl of them on hand in the fridge..and a few other things...cut fruits and veggies. Cheap and nutritious

Ann Millan: Eggs have good protein. And those chicken legs I talked about, they're great for lunches or snack after school. Does he like noodles - most kids do?

Todd Baxter: High protein foods we dont seem to  have problems with him eating. Anything green or from a grain group he doesn’t like unless its something like ramein noodles, and he goes mostly after the seasoning packs in that.

Kathleen Tehrani: oh…that’s not so good.

That usually means lots of msg and other additives.

Ann Millan: Those seasoning packets are probably full of chemicals.

Kathleen Tehrani: If he gets lots of protein..that's excellent. Particularly lecithin in the egg yolks for neuo function.

 

Todd Baxter: I will have to try the hardboiled thing I never thought of that with him.

Kathleen Tehrani: A little salt doesn’t hurt…and improves the taste substantially.

 

Ann Millan: Robin cooks 7 hardboiled eggs every week. She eats one for breakfast with her breakfast bar (her bar is GFCF). If she gets tired of them, she makes an egg salad. Good for lunch. Maynoaise is ok and pickle relish.

Kathleen Tehrani: If he likes french fries, you can take pretty much ANY vegetable (that's firm) and make decent "oven Fries" out of them. …like zucchini or sweet potatoes.

Ann Millan: Gluten Free Casein Free. Robin is on Feingold and Gluten Free (no wheat) Casein Free (no milk). If she cheats, it's with the milk. I actually think that's ok for her. She actually drinks almond milk.

If you can get this going for the kids and they seems more calm, I'd do away with the Ensure and replace it with vitamin pills. That's got to be cheaper.

Vegetables are another whole battle probably not worth fighting right now. Take one at a time. I live the tomato adds today. Pizza sauce (all natural) are good over noodles. That's why I love the tomato advertisements today.

Todd, are you overwhelmed or did you already know you needed to be doing this?

Todd Baxter: Well we tried the gluten free and it did nothing but put a big hole in our bank account. The Feingold I am willing to look into that….I’d never heard of it.

Ann Millan: I know. Robin was on it in 1975! It's getting more recognition as people are becoming so chemically sensitive.

Todd Baxter: I know the modern diet is way to full of chemicals.

Ann Millan: If you start it, I suggest first to just look at one child. Pay attention to just what he''s eating and what he likes. Take that information and refine it to be Feingold safe. That might mean frying with Wesson Oil instead of Crissco (one used to have BHT in it).

Todd Baxter: If it can last on a shelve for weeks, is really that good in your stomach.

Ann Millan: Keep the diet simple. Eat the same limited diet (good thing for him) for two weeks. Document in a journal behaviors. TRY not to let him eat anything in a fast food restaurant or school - take food with you. NO sugar substitutes or colas. 7-UP is the only one Feingod approved, if necessary.

Kathleen Tehrani: While looking up the 'bolting' AKA elopement issue, I came across autism service dogs. I know that your family has a dog Todd....and I understand that the dog isn't a 'service dog' per se, but do you notice an improvement in behavior with the dog interacting with the family?

Todd Baxter: Yes the dog has improved Timmy a bit, I have noticed more compassion in him since getting the dog. Main reason I got it, something important to our family is teaching compassion for others.

Kathleen Tehrani: Certainly. And you have noticed a calmer demeanor with Timmy?

 

Todd Baxter: With Timmy yes. Tyler on the other hand see her as competition.

Kathleen Tehrani: In his night time escape episodes....does Timmy seem to wander a long distance or does he stay more in the immediate vicinity?

Todd Baxter: He does seem to run to a park near the house.

Kathleen Tehrani: Ah...so he has a goal in mind you think?

 

Todd Baxter: He might. unfortunetly the park is near a busy road.

Ann Millan: Oh, that gives you something to work with. Consistency might bring this around. You could tell Timmy, if he doesn't run away(?) whatever term you use with him, you will take him to the park on such and such a day. Make it often and consistent. Reward him verbally with a good job and thank you for waiting until I can take you.

Todd Baxter: (nodding) We go to that park together a lot.

Ann Millan: Well, maybe you need to reverse it (since he's so smart) and say I'm not taking you to the park today because you didn't wait for me.

Todd Baxter: (no) Well the one thing we are thankful for is that he doesn’t run from us when we are out in public together anymore..

Kathleen Tehrani: That's wonderful. Do you know of anything in particular that helped that along?

 

Ann Millan: How can you make the park experience safe and he stop running without you.  Somehow turn it into a behavior learning experience for him.

Todd Baxter: The first question:  I think changing my tone with him has helped a lot. Before, when he ran, I would get scared and yell after him, now I don’t do that. I try to stay calm and that helps.

Kathleen Tehrani: Sure...yes.

 

Todd Baxter: The second: you know I am not sure. Without me there, he just doesn’t have the danger sense, he still needs to be watched over a lot.

Kathleen Tehrani: How soon after implementing Feingold did you see some of Robin’s more challenging behaviors begin to lessen Ann?

Ann Millan: You know, Todd, he is 7 years old. How unusual is that if he wasn't darting out?

Todd Baxter: The darting I don’t mind.  It’s the not stopping that bugs me

Kathleen Tehrani: The fact that there's quite a bit of 'tearing things off the walls' and all the wall repairs that you guys do...is a little concerning. Hopefully dietary changes will make a big difference.

Ann Millan: Robin stopped the wild running within a week. She was also biting her hand while running and that also stopped. She had a severe callus on the side of her hand from biting down on it while running.

Todd Baxter: Believe me I would like to see the home repairs go down. The Home depot bill should not equal a paycheck.

Ann Millan: Ok. Definitely the behavior of not stopping needs to be changed. If you count to 3 and he doesn't stop, I would immediately end the activity and take him home for a time out!

Todd Baxter: That’s what we do.

Kathleen Tehrani: perfect

 

Todd Baxter:  It has gotten better I have to admit. And heck I have become a wall repair expert. In time it will all pass, just takes patience and figure out little things you can do to change things.

Kathleen Tehrani: Right.

 

Ann Millan: Does he know you are not pleased? Showing displeasure is not a bad thing. One of Robin's biggest assets all these years is the fact that she likes to please me. If momma's happy, everybody's happy.

Todd Baxter: Heck putting up sound and light blocking curtains has helped a lot.

Kathleen Tehrani: Oh that 's good...

Todd Baxter: Oh he know that. I always tell him I am not happy with the way he is acting.

Kathleen Tehrani: Ann has some excellent behavior mod charts in her book...maybe you could hang them from the ceiling? That's half in jest...and half serious!

Todd Baxter: One of the things I have learned with having children with autism, is it’s not improving the child a lot of times, it’s improving yourself that makes situations better.

In our house hanging from the ceiling is a good idea..lol

Stephen Shore: There’s a lot to be said for that Todd.  It’s a matter of getting into a more receptive frame of mind.

Ann Millan: When I did the article with Kathleen this week, I tried to show that I had to be a drama queen to reach her emotional level. Good and bad. Robin's psychologist told me one time that was important for her to see.

Kathleen Tehrani: That is a very insightful statement Todd...(inward improvement).

 

Todd Baxter: With my boys that didn’t work with the drama. It makes matters worst. Have to take the zen approach with them.

Kathleen Tehrani: I think Ann was referring to 'structured' drama. More for 'emphasis'....particularly the good stuff.

 

Todd Baxter: We try to focus on the positive.

Ann Millan: I understand - different strokes for different folks. I do think, somehow, they do need charting. Maybe keep them in a notebook and they are not allowed to use the notebook without you. Do they keep things on the walls at school? The other thing, you are right - the parent is actually the trained person here. For sanity, however, there's nothing wrong with that.

Kathleen Tehrani: I like the notebook idea Ann. That makes it mobile as well....and can be taken on outings for immediate gratification

Todd Baxter: Yes I am a big note taker.. I have ever note on both my computer and iphone, that helps a lot.

Ann Millan: Let them do the same thing. Family involvement is a good thing.

Kathleen Tehrani: Right.

 

Todd Baxter: Timmy is not at the point where he can write yet. He knows his letters, he has shown me that a couple of times, but doesn’t put them into thoughts yet.

Kathleen: Maybe keep them in a notebook and they are not allowed to use the notebook without you…In lieu of behavior mod charts.

Todd Baxter: Yes 

Ann Millan: What about pictures! Can he draw stick figures?

Todd Baxter: Yes he can draw, his form of expression is building things.. A lot of times common house hold things go missing and he builds something...

Kathleen Tehrani: I love it. With a shift in diet and a few years of focus....you have yourself a junior engineer there Todd.

 

Stephen Shore: He may be visually oriented which provides an important key for developing communication and eventual courses of study in school and career opportunities.

Kathleen Tehrani: Excellent point Stephen. Looking for strengths and ways to maximize their potential is part of a solid, well-rounded program.

Todd Baxter: Like I tell my wife when things get hard, we get this boy speaking and he will amaze the world.

Ann Millan: Wow, that's great. Doesn't matter if you do not recognize the drawing or note - you may ask him to do something as long as he's doing something to make it a whole body experience.

Todd Baxter: Yes.  As we are speaking he is decorating the windows with hangers and cloths right now..lol

Ann Millan: Todd, getting back to diet, I think if you start looking at what the kids eat and try focusing on that, even use this in a positive way in the notebook, you've done a lot. After that evaluation, they take the next step. This is all baby steps, as you know.

Todd Baxter:   Yes. I will research the Feingold diet.

Kathleen Tehrani: I think this talk has been very productive...for us here as well as to share with other parents.

What you’ve shared about, ‘state of mind’, Todd,  is crucial.

Ann Millan: In my book, Todd, my first intervention chapter is diet. If diet works, everything else is so much easier.

Todd Baxter: Thank you for this Kathleen and Ann I will definitely look into the diet and see if this does help.

Just getting him to try new things is hard.

Ann Millan: Don't try new things. You should be able to do it with what he already eats.

Todd Baxter: Any links you care to share?

Kathleen Tehrani: If you can get the whole family on board it will probably be very helpful.

 

Ann Millan: Let me look and send you some. The library (for the Feingold or Jane Hersey books) is probably the best because you need to understand the process. Look on the Feingold website for the books they have listed and then get them from the library.

Todd Baxter: I always appreciate a new way of looking at something, or a different way to try something.

Ann Millan: www.feingold.org and www.nourishinghope.com. The latter is about all diets and is a little heavy.

Kathleen Tehrani: ‘Nourishing Hope’ is a great website.

 

Todd Baxter: I will take a look at both.

Ann Millan: Yes Julie Matthews is doing a lot for the nutrition community.

Stephen Shore: Proper nutrition and diet is so important for everyone – perhaps even more so for people with autism.  Those of us with autism tend to be studies in extremes.  I know some people on the spectrum who if they go off their strict diet – not only do they pay for it, but so does everyone else around them.

Then there are others, who are on the see-food diet.  We see food and we eat it.

Kathleen Tehrani: Stephen, you are so funny. Your comment is a reminder, though, that each case of autism spectrum is, indeed, a unique one.

Thank you all so much for contributing to the conversation and I look forward to having more Autism Round Table discussions in the near future.

Todd Baxter: Me too. I enjoyed it and thank you for all the good information.

Ann Millan: Good luck Todd. It sounds like you have wonderful/busy children.

Todd Baxter: I do. Thank you Ann, pleasure to meet you.

Ann Millan: Same here.

Kathleen Tehrani: He is definitely blessed! Fabulous discussion.

Thank you so much, Todd, Ann and Stephen.

 

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