Ann Millan, author and autism advocate, has some very real and meaningful understandings of autism spectrum. When Ann’s daughter, Robin, was diagnosed with autism in the 70’s, autism was an extremely rare disorder. There were no flurry of organizations, groups or social networking sites for support. Therefore, the Millan family’s path to independence for Robin is all the more astounding.

Robin is an engaging, talented and caring  woman who holds two jobs, drives her own car and owns her own condo. The diagnosis of classic autism is still there, but it certainly does not have the power to define who she is. I am so pleased to be speaking with her mother, Ann, today.

Kathleen: Ann, Welcome and thanks for joining me again. 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 the chapter in your book ....."Robin’s Siblings”.

Ann:    Sounds good.

Kathleen:   You share in this chapter of your book the emphasis you and Bob placed on providing a well rounded childhood for all of your girls. Can you describe for us how you achieved the level of normalcy that you did for them?

Ann:    Pam and Karen were seven and five years old when Robin was born. Fortunately for them, we’d already established a rhythm for our family life. They were at a good age for us to do things together. We’d even bought a pop-up camping trailer for outings. Both were involved in extra activities: Pam piano and Karen ballet. You know, the typical things people do with there kids. Then, Robin came along. This was exciting for all of us. The girls wanted a baby sister. However, with that, everything changed.   

Kathleen:   Challenges certainly abounded, but can you give some of your more challenging family issues and the ‘work arounds’ that you can share with other families who find themselves in the same situation?

Ann:    Robin’s autism behaviors appeared in infancy and I was determined not to change anything in her sister’s lives . . . but that just wasn’t possible because Robin’s behaviors were so unusual and demanding.  Pam couldn’t practice piano in our house because of the noise and friends seldom came over because of our household confusion. Our family sort’a ‘floated’ with existence for several years, accepting the reality and adjusting to the changes.  
After I found the Feingold diet (no preservatives or colorings in food), we all became very involved, trying to support Robin through diet control.  Looking back, that was a pivotal
moment in our family’s unity, I believe.

Kathleen:   Both of Robin’s siblings are very intelligent, educated young women. How would you say family life played into their respective roles in life? You stated in your book that you had no idea how Pam and Karen’s lives “benefited from Robin being the focus of the family all those years” ....I suppose I’m referring to that.

Ann:    Bob and I always assumed Pam and Karen would go to college. That was a ‘given.’ We had goals for them before Robin was even born. I think my guilt was more focused on them, than Robin. I felt I was ‘short changing’ them because of Robin’s needs. I couldn’t meet my goals of a normal life for them.
No doubt, they felt different. They knew our family wasn’t like other families. They had more responsibility, patience, and understanding than their peers. We tried not to be negative about our family’s situation, we just did what needed to be done.
On the other hand, I was involved in their schools and made sure they were succeeding. We did make life changes for them.  They wanted horses, cows, and chickens and we moved to a farm. They wanted to be in school activities and we always encouraged and supported them.
As I was writing the book, I realized I could not speak for them- . . . how they viewed their childhood, how they felt about Robin, and if they felt deprived of a normal childhood. Out of respect for them, I had to allow them to share their feeling, their story. I held my breath!

Kathleen:   For me that was one of the most telling portions. The fact that your girls were obviously cognizant of the importance of the family dynamics and their appreciation of how you and Bob did what needed to be done with complete focus, was touching and telling.

Ann:    Oh, I was a little surprised myself. As a parent, I still felt the guilt of not doing enough for them, even though they are in their forties now. With children of their own, they realize the determination to succeed with your children. . . the day in and day out responsibility and the commitment to be as fair and balanced as possible. It’s definitely a juggling act of love.

Kathleen:   You maintained a high level of normalcy, in my opinion, with a bare minimum of pharmaceutical intervention as well. That may be a bit off topic, but I think that the threat of pharmaceuticals being given more and more emphasis in the public autism conversation is frightening. I am so pleased with the emphasis your success story places on diet, Occupational therapy, Speech and Language therapies.

Ann:  The school system encourages pharmaceuticals! Oh, I tried that route but Robin had reactions to everything so I had to look elsewhere.

Kathleen:  Well, I’m not so sure that they are very helpful either....regardless of reactivity.

Ann:    Diet was Robin’s first positive intervention. The Feingold diet appeared on the scene when she was four years old (1975).  Changes in her diet brought changes in her personality. That was a miracle to us. Now, I’m not talking ‘cure’ which is what a lot of people are looking for. I’m talking about having a ‘good day’ with little running or biting her hand . . .  or simply sitting at the kitchen table, none of which she did before.
I had a comment from someone on my face book page yesterday, “If I never hear the word gluten free again, I’ll die happy.” How sad for those that do not realize the importance of diet intervention.
Julie Matthew’s book, Nourishing Hope can really help families. It’s a little overwhelming but she helps families fine-tune diet intervention for their child. Feingold and gluten free are only two options of diet intervention. There are others! Thankfully, Robin benefits from Feingold and gluten free.

Kathleen:   The Facebook comment was indeed quite sad. I have known parents, years ago who would have loved the opportunity to implement a simple dietary strategy after trying protocol after protocol that well meaning individuals would mention in passing.

Ann:    I guess I was so desperate for help with Robin, diet seemed too simple. But I did it anyway. I was shocked at the difference it made.

Kathleen:  So watching the differences Feingold and GFCF made in Robin’s behavior became a unifying bond for the family?

Ann:    Yes. We were just trying to control her behaviors and have some normalcy in our family. After Robin was established on the Feingold diet, we could do some things as a family. Activities or events were short and structured but they were inclusive. Shopping, going to church, having family over for dinner . . . those simple things. Only after Feingold could I begin to set rules for Robin.
With this progress, Robin then began to benefit from therapies. School was still too stimulating but my major priority was our family life at that time.

Kathleen:   It is almost impossible to separate the therapies from the diet interventions and the social aspects of family life. For parents with newly diagnosed children on the spectrum how would you advise first steps toward normalcy? What seems to be the order of priority?

Ann:    The first order for me was family unity. We all worked together as a team. I firmly believe addressing diet immediately will help to make the therapies more productive. Cost is critical and diet is the cheapest first step. Speech and Occupational therapies are critical at an early age.  LorRainne Jones, MA, CCC-SLP, PhD, Kid Pro Therapy, Tampa, FL, has published a study, just this year, on successes of getting non-verbal children to talk. This is exciting and her focus is also to help other therapists help their clients. Coupled with this is addressing the sensory issues most children on the spectrum have. Much of this can be done at home if directed properly by an occupational therapist.

Kathleen:   I’m going to go back to diet for just a moment longer. Nutrition is so absolutely basic. Hippocrates said, “Let food be your medicine.........”, and that seems to be brilliant on many levels. Food allergies, toxic ingredients, vitamin and mineral deficiencies are being proven to be core issues on a list of ailments and that list keeps growing day by day.
Now, as you stated above, once diet has been addressed the various therapies have fertile ground to be sown in.

Ann:    Because Robin was our third child, I knew her behaviors were not deliberate. They were uncontrollable, most days worse than others.  We often thought she was blind and deaf, something we hear from many parents who have children on the spectrum. In the picture (obviously a good moment) Pam and Karen got her attention to look at a book.  After diet we could actually ‘see’ her trying to listen and she wasn’t wild as before.

Kathleen:   Looking at the pictures of the girls together it seems that the older two were understanding beyond their years.

Ann:    Yes, they really were. They wanted to relate to their sister. Moments like that were very seldom - hence, I grabbed the camera!

Kathleen:   The realization....then the acceptance of the family structure being different from what was anticipated seems to be one of the hardest transitions for the families I’ve spoken with. There seems to be almost a grieving process involved before the joy and appreciation for the gift of the family that was given can be fully embraced.

Ann:   Parent attitude is important.  I don’t think Pam and Karen felt grief, they were to into themselves. They were both in school and loved their school work. I tried not to interrupt their lives any more than possible. It was important to me that they be individuals themselves as well as a part of the family.  Also, they were not babysitters for Robin. I could never give them the responsibility of ‘watching’ Robin. . . I was always there.  Bob traveled quite a bit so we were very close.

Kathleen:   Having one parent at all times who was completely accessible seemed to be key to your deep success as a familiy.

Ann:    Definitely, this made a tremendous difference. I was always there. They might have to wait for their turn or postpone something but their needs were met. When we moved to the farm, all three girls and Bob spent the week-ends in the barn! I stayed in the house and that was my time off.
Oh, on that note. Because the girls were always cleaning up after the animals during the week, they seldom did dishes or cooked. That was their time to themselves.

Kathleen:   You had built in hippo-therapy and many others!

Ann:    Without realizing it, yes we did!

Kathleen:   Bob being the primary worker ‘out of the home’ and you being at home in ‘command central’ also gave you the opportunity to fine tune home schooling, therapies and diet protocols. I hope that other stay at home parents read this and will view it as a positive.....as an opportunity.

Ann:   Yes. This is what parents did in the seventies. It was not unusual. Mothers stayed home and raised their children.
For me, I focused on understanding disabilities and helping Robin. I knew there was a real person inside of her body, I just had to let her ‘out.’  I belonged to several support groups and had a good support system (future chapter).

Kathleen:   Support and socialization seem key to normalcy would you say? The various extra curricular activities that you helped your girls maintain interest in were integral to your thriving family situation.

Ann:  Childhood, in my opinion, is inclusive of a lot of things: extended family relationships (i.e., relatives), community, responsibility, assertiveness, patriotism, etc. With this focus in childhood, children should flow naturally into adulthood. It did for me, it did for Bob, and it has for the girls and their families.
Individuals on the spectrum, even with diet, therapies, and everything else, just take longer . . . in some instances, a lot longer. But that doesn’t change the ultimate goal.
Also, looking back over forty years in raising our children, there are two main life-changing things we did:: 1) We presented ourselves as a united front to our children (even divorced parents can do this), 2) Respect. The girls treated us as their parents, not their peers, and they respected us and our extended families. (If you don’t have an extended family, create one.) We respected the girls. Encouragement and acceptance from other adults is important. All those Thanksgiving, Christmas, and Easter dinners with grandparents, aunts, uncles, and cousin was important, as well as neighborhood get togethers.

Kathleen:   Parents rather than peers, is a subtle difference albeit an extremely important one.
Particularly when routines can be out of whack, from time to time, leadership and respect are all the more important to keep everything on course.

Ann:    Not being a judge, but looking at other families, I have realized the importance of respect and unity. It’s just not there in many families today.  Oh, my age makes me so wise?

The final two pictures are Robin before and after  I started home schooling. I know this is something parents do not want to hear but the one-on-one instruction with therapies and schooling, along with diet, gave her incredible gains.

Kathleen:   I have no doubt but that is a true statement. While the economy is in quite a state at the moment and many parents are home due to lack of choice, I think it would be a wonderful time to ‘make lemonade’ and investigate the wisdom that can be found in your book....and implement some of the strategies that you outline.

Ann:    And families will be surprised that they can really make a difference. I know I  didn’t think I could do it. I surprised myself!

Kathleen:  Excellent. This feels like a good place to end our talk today. Congratulations Ann on a family that has become even stronger and more caring through the process of dealing with autism.

The next time we come together, let’s take a look at “ Building Our Plan: A recipe for Success”.

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