Kathleen: Ann, Welcome and thanks for joining me again.

Ann: Hi, Kathleen.

Kathleen: Your book, ‘Autism: Believe in the Future: From Infancy to Independence’ is an amazing book. Not only do you share your personal family story, but you give a complete description and road map for families to follow who are wondering where in the world to begin charting a productive path for their affected family members.

Today let’s talk a little about how diet, vitamins and supplements have impacted Robin’s journey.

Ann:  Looking back to Robin’s wild screaming as an infant, I have realized just how chemically sensitive she is. When I put her on the Feingold diet in 1975, she stopped bitting her hand within a week, her running was less intense. I cannot tell you how powerful I felt. Robin was on the Feingold diet for twelve years. I took her off while home schooling. I felt I had addressed her behaviors through behavior modification. In 1997, Robin was 28 and that’s when I started her on the GFCF diet with supplements. She’d been on supplements before but they were short term.

Kathleen:   Backing up for just a second, you noticed an improvement IMMEDIATELY with Feingold?

Ann:  Oh, yes! The Feingold diet eliminates food coloring and preseveratives from the diet.

Kathleen:  This seems to be such a small thing, but apparently it has had very profound results. Have you spoken with other parents who have had similar results as quickly? And in your estimation, did the affected persons involved also have classic autism?

Ann:  Actually, I became a diet counselor for the Feingold Association for those twelve years. Have you seen in the news recently where the Food and Drug Administration (FDA) has requested cereal manufacturers to start removing all the color chemicals from products. I just love it, forty years late!

Kathleen:  But what excellent confirmation that the practices work....not just for Robin and for those in your immediate circle....but they must work for a very large segment of the population with special considerations.

Oh that’s wonderful information. These are the types of responses that are so helpful for parents of newly diagnosed children.

Ann:  Most of the families I worked with had children that were ADHD or had another learning disability. I think many parents of children as severe as Robin don’t realize the role diet plays in their child’s behaviors and concentration. They are looking for a quick fix, instead of building on development once diet is established.

Kathleen:  I think perhaps the autism community has grown to be very leery of ‘quick fix’ promises…and are actually looking for a sustainable model for diet and supplementation that has been tried and tested over the long term.

Ann:  Maybe. So many families just will not look at diet and supplements in a positive way because it has not been “blessed” as a treatment by the Centers for Disease Control and Protection (CDC). My issue, relating to your question, was that I didn’t understand the long-term commitment, particularly of supplements. I thought once you balanced the body, it was balanced. Now with diet, I do understand “allergies” so that part I do understand. I’ve learned a lot of hard lessons.

Kathleen:  Oh I see your point. There is little corroboration from the main stream agencies, and this may cause some resistant thinking. So where do you believe the DAN protocol stands at the moment in the view of the larger autism awareness community? But then perhaps I’m jumping ahead too far!

Ann:  I think young families are listening and have educated themselves enough to start the DAN protocol. My concern, however, is that there is a lot of variety in protocol for some of the DAN doctors and families might need to shop around just like they do for any other doctor. Families of older children are more reluctant to start DAN because they think it’s too late for their child.

Kathleen:  Since there is such a conglomeration of causal factors in autism spectrum, is there a standardization of the DAN protocol? Or given the nature of autism spectrum, is that even possible?

Ann:  That’s a good question for Jane Johnson, Ph.D., director of DAN. As an advocate and parent, I think parents need encouragement from other parents to even be successful on DAN. As an example, seizures can play a big part in complicating a persons success.

Personally, I believe the diet is nothing but positive for everyone. And, individuals with autism, or compromised immune systems, need to supplement vitamins to reach their full potential.

Kathleen: You mentioned that some parents may fear that their loved ones are too far along in age for diet protocol to make a difference in their over all well being. Your experience with Robin was just the opposite, was it not?

Ann:  That’s one reason I wrote the book. Robin had “good day bad day” behavior. Why? Even with the Feingold diet I felt something was still missing that I could do. When the GFCF diet came into the equation, I watched for a long time before starting it. And it was the best thing I did.

Kathleen: So at 28 years old, Robin made some remarkable gains due to the implementation of the Gluten Free Casein Free diet. Could you share some of those specifics?

Ann:  In her twenties, Robin was slowing regressing. She wasn’t employed, she was bored, and lonely. Her behaviors were regressing to slamming doors and frustration with us. Before starting vitamins and supplements, we put her on the GFCF diet. My daughter came with our grandchildren and we headed to the beach. Her kids played in the sand. As Pam and I were talking, Robin started playing (on her very own) with the grand kids. I was shocked because she’d never done this before. From there she started supplements and vitamins and within two years she had her driver’s license, own condo,  and promoted to cashier. That was eight years ago.

Kathleen: From time to time have you taken Robin off the GFCF plan? And if so what have you noticed?

Ann:  Oh yes. I hate to admit but when she moved into her condo I took her off because I thought she couldn’t cook GFCF with her support staff. Someone suggested I try Prozac. What a disaster. Robin’s DAN doctor helped me wean her off the Prozac and we went back to the GFCF diet. FYI: She never stopped the supplements so I knew the diet was the villain.

Kathleen:  What was the supplemental supports you were using Ann?

Ann:  Actually, Robin was on Secretin, along with B-6, Methyl B-12, Folinic acid and Fish oil. This protocol is very important to be prescribed by a DAN doctor. I know parents who say, “My child’s taking B-12.” However, the brand, combination and dosage are critical for results. This is nothing for a novice to play around with.

As DAN began to understand the importance of Glutathione, Robin started that. Then her doctor added things for cell repair; 5-HTP, NAC, DMG, Zinc. It sould’s like a lot, but it works for Robin.

Kathleen:  Yes, these are serious supplement protocol. Hmmm….it’s my experience that these are also supplements used for support during heavy metal detoxification (such as lead and mercury). Particularly B-6,12, Folic acid, Zinc, Fish Oil and Glutathione. That’s very interesting.

Ann:  Actually, Robin had a Mercury detoxification about fifteen years ago before she started DAN.

Kathleen:  Did you notice any immediate results from that?

Ann:  Yes, she was in an accelerated learning program and after that experience is when she got her first job bagging groceries.

Kathleen:  So in terms of behavior and mood, would you say there were significant gains made after the mercury detox?

Ann:  Yes. There were gains. Everyone defines significant differently. She was able to hold a job. She was thinking more clear and could accept the challenges of her job. Those are baby steps to some but to me they were major/significant gains.

Kathleen:  Now of course no two people on the autism spectrum are the same, and no set of causal factors are the same. Obviously we are not saying that mercury toxicity is present in every case of autism spectrum disorder.

I agree with you Ann, that what you are describing are indeed “significant” life quality improvements.

Ann:  You’re right, no two people are the same and for each the solution might be different . . . but I’m not convinced most people with autism cannot have positive results and have a better life than they have now. . . whatever that takes.

I think the “autism force” is always trying to control Robin (and others) and DAN  is how I have been able to help her get past the “autism force” to have a more independent life, if that makes any sense. Since starting DAN, she’s also had language therapy which she has benefited from because I have been able to keep her balanced with DAN.

Kathleen:  Earlier you said that you learned some difficult lessons over the years. I’m sure that staying focused on diet was one of those lessons! Are there any other specific ones that you would like to share regarding diet, vitamins and supplements?

Ann:  Diets not easy and many times you think it’s a waste of time. I don’t question it any more, or the vitamins and supplements. We have a plan, it’s working, and I’m sticking with it, along with the language therapy.

For parents of children (regardless of age) consistency in our lives is survival. I have found Robin’s window. Admittedly, it’s taken a long time but it’s so worth it. She’s not in jail, she’s not in an institution . . . and she’s not at home! Yes, we are her monitors and yes we are still very involved in her life. But, she loves her life and her independence. That’s all I was looking for!

Kathleen: Ann, Robin seems happy, fulfilled and productive. Your investment of time, effort, trial and error has definitely paid off in spades for her quality of life. Thank you so much for sharing your experiences through your book, so that hopefully many other parents can benefit from your road without having to  ‘reinvent the wheel’ every step of the way.

Ann:  The book, I hope will help families open their minds to possibilities and visions for their children. No, their story isn’t the same as mine, but yes, we’re all on the same path.

My main concern with today’s conversation is that yes, families can implement diet without professional support (support groups are helpful); however, don’t “play” around with vitamins and supplements. Research and find a good professional (preferably DAN). Many parents today are wasting their money and it could be dangerous for their child.

Kathleen: There is a lot of wisdom and experience behind your words Ann. Thank you for sharing about this important topic. Do you have any specific links where parents interested in DAN protocol can learn more?

Ann: Yes, the Autism Research Institute, Defeat Autism Now. Their web site is: www.autism.com.

Kathleen: Thank you so much Ann. The next time we come together I would like to talk a bit about your family’s experiences with Occupational Therapy and Sensory Integration.

For more insights from Ann and helpful autism  information, look for our next segment of:

Asking Ann About Autism

Ann’s book can be found in bookstores and online at:

Ann’s Book on Amazon

And at Ann’s website:

Autism: Believe in the Future