Lutein is a carotenoid pigment that makes the ‘yellow spot’ on the retina of the eye. If the immune system adapts to remove lutein, it would cause something called ‘scotopic sensitivity syndrome’, or sensitivity to the blue-violet light spectrum that the yellow spot blocks out. In the non-autistic person, that yellow spot provides the visual focus that is the basis of social interaction. It is often said that autists ‘look out of the corner of their eyes’. Irlen lenses were developed specifically to help people with scotopic sensitivity syndrome, and many autists choose to wear them. So this discovery that Sandra made, that removing lutein helps people with autism, led to an understanding of scotopic sensitivity syndrome as well. But we need to go back and talk about Sara.
At the time that Sandra made the discovery about lutein containing foods, Sara was living with her as her foster daughter. She was severely autistic, hyperactive, abused and considered to be severely mentally retarded, probably unteachable. Yet Sandra had taken her in and worked with her to the point that Sara could manage her behavior and say a few words. Sandra had used the best information she had on diet and nutrition, and wasn’t aware that more improvements could be made, but when she started looking into the chemical properties of lutein, and the way that an immune response to a substance of this kind might cause a cascade of changes that leads to the condition we know as autism, Sandra consulted with other researchers and asked whether they thought it might be worth a try to combine all of the known research into autism with a lutein-free diet. At that time, new research was indicating that autism might have a connection to gluten and casein. A Norwegian doctor Kalle Reichelt had measured unusual opioids in the urine of children with autism. He called them gliadomorphins and casomorphins and thought they might be the by-product of incomplete breakdown of proteins. Other researchers had found enzyme deficiencies in autists, unusual immune system activity and metabolic abnormality and still others were experimenting with B-vitamin supplememts as every day new discoveries were being made and spread far and wide in the new on-line world of parent-researchers and autism forums.
But when Sandra suggested adding the lutein-free component to Sara’s diet, the responses she got were not positive. She was told it would be too difficult, too limiting. However she wanted to try it. She carefully designed a lutein-free diet that contained all of the essential nutrients from foods and she asked the permission of Sara’s social worker who agreed that she could do it once the adoption process was complete. In a few weeks, Sara’s adoption papers came through and Sara was put on her special diet.
The changes that Sara went through are described on our book “The Power of Exile. Autism, a journey to recovery”. Sandra shared her discovery online and soon there were thousands of parents asking for her advice. Writing individual diet plans using the ‘Sara’s diet protocol’, sometimes adding a supplement such as cod-liver oil or Evening primrose oil which provides essential Arachidonic acid, often buying hard to get products and mailing it to the parents, taking into account individual differences, soon thousands of autistic children were on a special diet following her advice, with results as good if not better than Sara’s. The results were astounding and many children with autism recovered fully and were declassified. Sara was finally declassified from an autism diagnosis in 1998 while we were living on Atlanta, Georgia.