Charlie and John

On the night our second child, Charlie, was diagnosed as possibly autistic, a harsh reality sank in. We now had two children with the same disease … two beautiful little boys who had been so normal. I spent the night looking through their baby pictures-one or the other giggling in the bathtub, playing with toys, looking right at the camera with a grin from ear to ear, at the beach with their cousins, their first Christmases-and crying, ‘How could this be?... Why them, out of all the kids in the world?... Why both of them?’

Having decided for an ABA/Lovaas educational approach, I mobilised all my strength to find therapists to get the programs off the ground. We needed manpower for a total of 55 hours of one on one intervention. I called every parent whose name I could find, and sourced names from every angle imaginable: Psychology and Educational Departments at universities, teachers at Nursery schools, babysitters who had a lot on the ball, etc. Interestingly, and because many times in life you are fortunate to meet the right person at the right time, I came upon Jodie.

Also a foreigner in London, she not only provided me with two fantastic therapists we still have to this day, but she asked me some all important questions….’Have you looked at the diet?’ (‘What diet?’) ‘Are there a lot of allergies, eczema in your family?’ (‘Sure, but big deal?’) ‘Do your kids ever get a red ear?’ Now, there, I nearly dropped the phone. The most innocuous and bizarre symptom, this beet red, hot ear had baffled me for months.

As I listened to Jodie describe the intestinal problem, the necessity for the gluten and casein free diet, something clicked in my head. It just made sense. Both boys’ food choices had become extremely limited, and they primarily lived on pasta, bread, apple juice, and baby yoghurts. I quickly realised that they were actually craving the wrong foods for their ill bodies.
I immediately got hold of Paul Whiteley, who works with Paul Shattock at the Autism Research Unit of the University of Sunderland, and sent off a urine sample from John (in retrospect, I wish I had gotten a sample from Charlie, but still being in nappies made that difficult). I figured we would need some proof of the validity of the diet.

The more I read on the subject, the more I became convinced that the diet was worth a try. I decided to start it, despite reticence from several people close to me who were clamouring, ‘Their behaviour is bad enough, you don’t need to fight at meal times with them…. You’re grabbing at straws…. it’s expensive and a hassle…. wait and see what the urine results say’. I decided that maybe the best thing was not to tell anyone. In my logical mind, I figured that if it wasn’t a drug, I’d try it. (Hell, I would walk to Timbuktu barefoot if I thought it would help!)

On a Sunday in February I pulled out the baby yoghurts. Both boys normally had two or three a day, but I managed to give them other things to eat. By Thursday, what I saw in Charlie was nothing short of miraculous. He began looking at me. He was calmer, and not throwing himself on the floor anymore. I figured maybe I was imagining it. On Friday, I asked, as I asked every week, at his nursery how his week had been; I was overwhelmed to hear the Headmistress tell me, ‘He’s transformed. I can’t believe it. What have you done? He’s babbling, not crying, and looking at me.’

I nearly fell over! I told her about the diet, and she seemed impressed. That night when my husband came in the house, he looked around and said ‘It’s quiet in here…..what’s going on?’ I told him as well, and he was amazed.

I really started believing this theory more and more. I was looking forward to pulling out the gluten, although I knew it would be more difficult and take more time to see results. I was also interested to see if John would show any change with the gluten, as he hadn’t shown much reaction to the casein being eliminated.

Three weeks later, I bit the bullet and pulled out the gluten. John’s behaviour was a little ‘off’, and he was more prone to tantrums, but it wasn’t shockingly overwhelming. About 10 days in to the diet, however, he went through withdrawal. John was like any picture of a drug addict you’ve ever seen, writhing in pain and moaning. My mother was in from the United States and was a witness to the scene. We were speechless, and powerless that he should be in so much pain. (The first pain he had felt in nearly two years) He moaned for 12 whole hours, all night long.

I was upset to know that all that time, from when he changed and slid into this disease, until his withdrawal, he had opiates floating around in his brain causing brain damage. I was more than upset, I felt physically sick. I realised that my son had been getting brain damage right under my nose, with every piece of bread I had lovingly given to him.

Ever since, we have strictly adhered to the diet. We’ve learned a lot on the way, and I have had to become an obsessive label reader, even being known to call up food companies. I’ve found equivalents for foods they love, including ice cream, M&Ms and pasta.

The result of ingesting the wrong foods can have scary effects, notably regressive behaviour. For example, in May my brother, who is John’s godfather, came over from Boston. John always adores seeing him, and regularly hears his voice on the phone; they are close and affectionate together. The night before, however, John had snuck two water crackers, which he had stolen, Houdini-style, from the top of our refrigerator. That morning he walked right past his uncle, as though he didn’t see him. By the afternoon, the gluten effects having worn off, John was overjoyed to see his uncle, running into his arms upon ‘seeing’ him, and screaming his name at the top of his lungs.

Charlie has some similar stories, including a gluten-induced regression just recently. While at school, he made a Cheerios necklace, and managed to eat a handful of his formerly favourite cereal. That night, I was privy to him throwing himself on the floor, and screaming at blood-curdling levels.

Where we are today

After merely eight weeks on the diet and with the Lovaas, Charlie did not ‘test’ autistic at his multidisciplinary assessment in April. (We joke that he has the world’s shortest autistic diagnosis and could be in the record books.) Seven months later, Charlie still does Lovaas 20 hours per week, but is completely mainstreamed in his Montessori, where he goes every morning, like a normal three year old child. His language is exploding (he uses four word sentences) and his eye contact is normal. He is zipping through his drills, and our Consultant who was recently over from the United States, said that his expressive language has improved 100% since we’ve started.

John is just beginning mainstream school. He is a whiz in his Lovaas sessions, and his concentration span is greatly improved. He wants to learn and loves succeeding a drill. Two Ed Psych’s who saw him before his treatment began and just saw him over the summer were speechless…. they had never seen such progress in a child. He can reason above his age level when he has a visual cue, but is still battling with receptive language, although it is improving. His behaviour is no more disruptive than any other child’s in his classroom.

Yes, we’re very fortunate. Yes, we’re working and pushing our kids hard to give them as much input as possible. Yes, they are still challenging boys, and we have a long road ahead of us. Yes, the diet might seem strict, but I am convinced that it saved Charlie from a full-blown case of autism; he merely had a brush with it. I also believe that the diet stopped John’s on-going brain damage. Now, with the Lovaas, we are re-wiring around the damage, much as a stroke victim would.

On the eating side, Charlie now has reverted back to loving vegetables, and he is a homemade soup fiend. John is still quite picky, but this is improving a bit. If he could he would live on crisps, but many five year olds are like that. In much of the literature we have read it is mentioned that dietary choices are most positively impacted after a year on the diet.

People with whom I speak are often amazed that I can be positive about autism. I believe there is a lot we can do now to help our kids, and that we are on the threshold of huge scientific breakthroughs. I hope and pray for a cure, and am excited that some very courageous doctors are at last studying the intestinal, metabolic and immunological causes of autism.

What advice do I give to other parents?

1. Keep a journal of physical and behavioural symptoms that you see. I’ve been doing this since January, and I do love flipping back through every once in a while. Primarily I find that the behaviours are symptomatic of a physiological issue! Sometimes the most insignificant observations allow you to pinpoint a big picture scenario, and to understand which treatments are successful or useless in your child’s case.

2 . Be strong and remain focused. You will have dissenting voices around you about the diet, various therapies and medical treatments. I still do. Primarily I hear that it’s mean to be ‘depriving’ my children of certain foods. However, I truly believe I’m saving my boys from further brain damage. I just can’t allow them to have foods which are poisonous and toxic for their systems, much as I wouldn’t allow them to shoot heroin. The day their intestines are cured, they can name whatever they want to eat!

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