Barrie Silberberg is author of: The Autism and ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten Free and Casein Free (GFCF) and Other Interventions, to be published by Sourcebooks, Inc. April 2009.  Having been one of the earliest diagnosed people with autism on a GF/CF and low Salicylate/low Phenol diet (I went on this in 1990) I invited her to send me some questions about my experiences with the diet.  Here’s our interview: 

BARRIE SILBERBERG
1, What do you think are some of the reasons parents today hesitate to start a GFCF diet for their child, even knowing the results could be amazing?

DONNA WILLIAMS

I guess, to start with, up until the recent studies which found a gene for gut disorders prevalent in a percentage of people with autism, the whole diet thing was considered anecdotal.  Conservative people won’t try what’s only anecdotal and with products like ABA using science as their hard sell (psychologists filming and ticking boxes apparently makes an approach scientific, even though recent studies found it no more successful than a range of other early interventions) its not surprising that dietary interventions got flung in the ‘hippy’, ‘flake’ basket.

And there was this war between those who defined autism as a treatable neuro-biological disorder and those who saw it as a valued neurological and personality difference.  And I’m an example of where it is both, so I can really appreciate both sides. But when those supporting diet being caught up with cure groups and the eugenics related goals of some of those groups, it put off a whole load of egalitarians too.  There’s nothing very egalitarian or particularly humanitarian about eugenics.

The problem is, of course that each camp kept trying to invalidate the other without acknowledging the logic that there were in fact those for whom autism had everything to do with gut, immune and metabolic disorders and there were those for whom it had little or nothing to do with these.  And in that logic, it’s inevitable one could get genes or environmental impacts which lead to both in the one person.  So there were  going to be those like me where treating gut, immune, metabolic disorders would reduce my autism-related information processing, sensory perceptual and co-morbid disorders, effectively reducing the ‘severity’ of what gets identified as my ‘autism’, yet I’m still and will always be someone whose brain organisation and personality is of an autistic type.

For me, diet brought in with the right person for the right reasons is about improving opportunities, particularly for health, but opportunities for development, learning, greater communication and connection if it leads to significant improvements in digestion, brain nutrition, more balance in the neurotransmitters governing co-morbid mood, anxiety, compulsive disorders and attention deficits.  It’s a tough world out there and the more you are disabled the harder that world is getting, especially as economy collapses around the world.  We each need to reach our highest potential, whatever that is.
BARRIE SILBERBERG
3.What line would you say to parents, who say, “It’s just too hard to do this diet.”

DONNA WILLIAMS

I’d tell them there’s a million times I’ve said that too.  I’d also say that its only for those who have gut, immune, metabolic disorders, its not a diet for a label.

I had jaundice and recurrent infections since 6 months, hives, asthma, brain edema (brain swelling), brain fog, constant swinging between diarrhea and constipation with associated pains and cramping, dental problems, type 2 diabetes, b12 deficiency, 2 primary immune deficiencies, 26 years of regular antibiotics.  But there’s around 30% of people on my father’s mother’s side with gluten intolerance and on my mother’s a high rate of colitis as well as substance abuse.   So things clearly weren’t right.  So I was a really good candidate for diet.

But I also had such disturbed body sense, was so addicted to high salicylate foods and dairy and so socially feral, that the family was unable to get me to sit at the table and eat meals until I was 9 and then it took 2 years of me doing forced vomiting before the family solved my social-invasion-food drama with the help of a mirrored living room wall and being sent off with food to eat on my own.  This was also around the time my family tried zinc, vitamin C and multivitamin-minerals on me.  I was 10 and it was 1963 so again probably the earliest case of nutritional supplements used to help someone with autism.  And it was the year I went from 90% meaning deaf to 0nly 50% meaning deaf and gained functional speech so I do think it contributed (so did gestural signing, bullet point slowed speech and representational objects). For the record, I didn’t feel imposed upon in being given supplements.  I just took them, no drama.  I didn’t know why though I did know these were meant to be good for me (I’d do the Palmolive diswashing liquid commercial, which meant, in my language ‘so this is good for me’).  The zinc and C tasted good, the vitamin-mineral capsules didn’t.  But there was a TV advertisement of people taking vitamins and that made me feel I was the same as the people on the TV (though my parents never knew this).

So I know how hard it is to even get some kids to eat.  But a London hospital study by Dr Richer found the longest an autistic child in the eating disorders clinic went before trying a new food was 17 days, so even though you fear they’d starve themselves to death, in fact they don’t.

I do think there’s an age at which its got to be a whole household change and an age at which you can explain the diet to a child.  I also think those who have to be on it need to know of others who are too because it really can feel isolating.  It’s also really important to make the diet fun.

BARRIE SILBERBERG
4. What part of your autism vanished, would you say from being on a GFCF diet?

DONNA WILLIAMS

That’s a really hard question.  The first things were less infections and bowel discomfort, a clearer head, ability to reason, the awakening and connection of body sensations and feeling safer with emotions, ability to begin to reason about and discuss experiences and feelings.  I became less violent and obsessive after coming off wheat, less ‘stoned’ after coming off dairy, less fragmented, hyper, agitated, manic in coming off Salicylates.  So each effected me differently.

But its also try that I was still mono-tracked in my processing, that even though vision became more cohesive it was still fragmented and I was still relatively meaning blind, although I became less meaning deaf, the meaning deafness was still there.  I was still faceblind.  I was still an autistic ‘personality’.  But I was functioning less in the disorder proportions for my personality traits, so I was ‘less autistic’.  The levels of my mood, anxiety and compulsive disorders reduced.

It took many more years to get my cognition to the point it is now, at 45 and diet was maybe 50% of that but certainly not the whole of it.  So many other things were equally important; the use of gestural signing, representational objects, tinted lenses, kinaesthetic learning, advocacy, an autism-friendly environment and life, fun, sunshine, being seen as a person, nature, music, movement, arts.  All of these were equally important.

I have known of people who didn’t need so many interventions and for whom diet really changed things but I’ve known others where diet had no effect or where they went GF/CF but didn’t see effect until they also went low salicylate.  I’ve known people who went off dairy but onto soy and then had the same or worse problems because of the soy.   And I’ve known people where, like me, there was too much going on for diet to address everything.

BARRIE SILBERBERG
5.What are some changes in children that you have observed, after the GFCF diet and other interventions?

DONNA WILLIAMS

Less infections, less Dyspraxia, I’ve seen Oral Dyspraxia  diminish, more cohesive visual perception, better receptive language processing, longer attention span, capacity to share, less irritability and agitation (once withdrawal effects are over), less self injury, less biting, hitting, punching and hair pulling of others.  I’ve seen kids with immune problems improve with zinc, C and acidophilus.  I’ve seen kids with mood and attention problems improve with omega 3s.  I’ve seen a large percentage of people with Dyspraxia, information processing problems, depression, selective mutism and anxiety disorders improve after 30 days on an age-related dose of the amino acid L-Glutamine.

But, I’ve also seen 6 people get hyper after L-Glutamine and know it is clearly not for all.  I’ve also see many people put on supplements where there were no physical indicators they needed these things and where they had no effect.  Unfortunately, I’ve also seen children on toxic doses of chelation supplements which has really worried me, especially when the family has been advised this is all part of ‘detox’ and the child is grey or orange.  That totally distresses me big time.  Supplements should be done in sensible doses for sensible reasons with those who have clear indications of health issues related to nutrient deficiencies and any long term use of supplements should be monitored by a qualified health professional.

BARRIE SILBERBERG
6.Besides the GFCF diet..what else do you think are the best biomedical interventions?

DONNA WILLIAMS

I’m not a naturopath so I can only say from my observations and also what has worked for me.  Omega 3s have been studied for mood disorder as has L Glutamine in treatment of depression, gut disorders and balancing blood sugar and zinc and acidophilus for gut immunity, so I can go with those.  Vitamin C is good with allergies and immune disorders so I can vote for that in sensible doses.  Calcium-magnesium and B complex vitamins are a good idea if going GF/CF to make sure you have enough of these.

I don’t support chelation therapies even though I do know our soil and food is mineral depleted since the 60s and 70s, in fact studies found in the US this was up to 85% depleted, most countries 75% and Australia 50% depleted due to overuse and fast growth fertilisers, so in that sense, yes, I can support supplementation of minerals in deficient diets but I don’t believe in flooding young bodies with high, potentially toxic levels of minerals for chelation purposes.  There is so much else people can do.

Exercise, water, organic food, laughter.  All of these are good for detox, blood health and immunity.  I had 2 primary immune deficiencies and 20% of people with autism are found deficient in secretory IgA (I had none and very few white cells) so I needed specialist intervention.  In my case this was through an immunologist.  My view is that only those in this group need this level of support and that whilst this group needs to be acknowledged, it shouldn’t be projected onto the entire autistic population.

BARRIE SILBERBERG
7. Do you feel there is any special age that the diet works well on?

DONNA WILLIAMS

If you have gluten intolerance, then the longer you’re on gluten, the greater the long term damage to the bowel, the flattening of the bowel villi, the compacting of feces which is no longer moved along by the now atrophied villi, and ultimately inflammatory bowel disease and functional malnutrition.   None of that is good news for development.  But what people need to know is that those with secretory IgA deficiency (as was my case) often test negative to Coeliac even though they are gluten intolerant.  So a urine analysis for undigested gluten protein levels may be more useful than invasive tests like bowel biopsy.

Re dairy intolerance, I feel the long term damage in my case was from it exaccerbating immune deficiency and increasing things like chronic ear infections and glue ear for years on end which really contributed to what was already neurologically meaning deafness.  So in a case like mine, the earlier that’s dealt with the better for receptive language and immune health.  But its important to replace the calcium levels and to avoid reducing immunity further with overuse of soy which reduces secretory IgA and reduces gut immunity.

Regarding Salicylate intolerance and age, you’d look at its impact on things like asthma, eczema, hives, recurrent infections and attention deficits.  How soon would it be right to reduce or remove the impact of these things on one’s relationship to one’s body, one’s capacity to learn, to experience broader social inclusion?

I think if my early childhood was one where my health issues were understood and my first experiences of food were those I was not intolerant to, then I’d not have missed what I didn’t yet know, what I was not yet addicted to.   But, saying that, I don’t think we should presume that every autistic personality will have these health issues.  We have a post natal test for Phenylketonuria which, left untreated, used to result in mental retardation and autism before the 1950s.  We should have a test at the age of 6 months for secretory IgA deficiency which emerges once the mother’s immunity has worn off.  It is also at 6-10 months old that children first move onto high salicylate fruit juices, artificial colorings (made from coal tar and high in salicylates) and onto hard to digest cow’s milk and gluten proteins.  If we know which children have inflammatory states, immune disorders or genes predisposing them to gut or detoxification disorders then we can implement the healthiest changes for those children at an age that would maximise their developmental potential.
BARRIE SILBERBERG
8. Can the diet help an adult?

DONNA WILLIAMS

I was put on supplements at age 10 and moved onto eating whole meals around age 9-11.  I slipped out of this in my early teens and got treatment for gut, immune, metabolic disorders from my 20s.  I definitely felt the earlier interventions were useful and that they laid a foundation for later accepting diet and supplements in the treatment of gut, immune, metabolic disorders.  I do feel it took years to normalise bowel and immune function and that there would have been less long term impact on brain health, gut, liver and pancreas function if I had these interventions in childhood.  I have definitely seen some adults dramatically improve on the right diet but the full effects take longer than in children, up to two years for gut function and blood health to recover and normalise and for the impact of functional malnutrition and toxicity on the brain to be progressively overcome.

I’ve also seen diet implemented in adults for whom gut, immune, metabolic disorders are not part of their autism so it’s had minimal impact.  Those same people, however, may adapt very well to environmental interventions for co-morbid psychiatric, identity or personality disorders, communication disorders , sensory perceptual disorders, information overload, exposure anxiety or just being seen as an equal, included person.

BARRIE SILBERBERG
9.What is the best improvement due to diet that you have seen in someone?

DONNA WILLIAMS

I’ve seen people who before dietary interventions had no cohesive vision, walked like a drunk, had no functional speech and were violent, self injurious, highly anxious and confused come back to see me with these issues reduced anywhere from 20-80%.   I’ve been an autism consultant since 1995 and have worked with hundreds of people on the autism spectrum.

Keep in mind that I use many strategies and interventions and most are not dietary and that even where someone tried dietary interventions these were not the only interventions tried.  However, probably 50-70% of those I’ve worked with have tried some level of dietary interventions and I’d say these showed some improvements in around 70% of those who tried them.  I’d say most who improved went up a level from severe to moderate or moderate to mild and a few made leaps up two levels.

To give you some idea of degree of change, one six year old went from smearing, self injury, no toileting, no speech, to losing the smearing, being no longer self injurious, being toiletted, capable of turn taking and waiting and having 3 word sentences and interacting well with siblings and able to enjoy outings with the family, all after 6 months of dietary interventions.  But, this was a child with allergy rashes, asthma, eczema, bowel problems and chronic infections before interventions so there were health signs he was more likely than others to benefit.   I do recommend that a family trying dietary interventions longer than 30 days be aware that a qualified naturopath would oversee the long term use of dietary interventions.

I’d like to stress that its really important to consider the whole person.  There is no point fixating on the health of the body if the mind or emotions are disturbed, alienated and the person misunderstood, excluded or fixated upon as a case.  Health interventions have their place in the respectful treatment of those they apply to and should never be presumed to replace a healthy social, emotional, communication and learning environment.

Warmly,

Donna Williams *)

author, public speaker, autism consultant

http://www.donnawilliams.net