U.K. activist Polly Tommey reveals how a special diet saved her son
To draw attention to the plight of people with autism, Polly Tommey took her shirt off. Tommey of Hampton, U.K., and supporters launched a billboard campaign last year that grabbed the eyes of the nation, including those of Prime Minister Gordon Brown. The billboards featured 43-year-old Tommey in a push-up bra with the message: “Hello Boys. Autism is worth over 6 millions votes. It’s time to talk….” The strategy worked, gaining Tommey and her group access to top politicians and pledges for government help.
Starring in the stunt didn’t phase Tommey, who’s made autism her life’s work. Her passion stems from parenting three children, including 14-year-old Billy, who has autism. In between mothering, Tommey edits The Autism File Global, a quarterly magazine she publishes for parents and caregivers. She also runs The Autism Trust, a charity dedicated to developing regional facilities in Britain and the United States where adults with autism can live and work. Together, Tommey and her husband Jon run four nonprofits dedicated to improving the lives of people with autism.
Recently, Tommey spoke frankly with editor Alicia Woodward about her family’s experience with autism, sharing how a special diet turned despair into hope.
Living Without When did you first notice that Billy had some problems?
Tommey Billy developed a rather nasty cough when he was about 7 months old. The cough persisted and over the next several months, the doctor prescribed multiple regimens of antibiotics, which I gave him without questioning. Looking back, I don’t think all those antibiotics did Billy any favors. That said, he was fine. He passed all developmental milestones during his first year and I had no reason to think there was anything wrong. Then when he was 13 months old, he convulsed a few hours after he received a routine vaccination. We rushed him to the hospital where they told us not to worry, that he’d just had an adverse reaction, which they said was common. They discharged him with a prescription for another six weeks of antibiotics, just in case he had something, and they told us to take him to the doctor if he didn’t get better.
Did he get better?
No. He became very sick, very weak, like he had the flu. He developed chronic diarrhea and had horrible red sores all over his mouth. His hair began falling out. As the weeks passed, he lost his baby speech, withdrew from us and became obsessed with the washing machine. Every time it was on high spin, he’d just sit there and stare at it. Then he started head banging, thrashing his head against the wall. By the time he was 2, he didn’t seem to know we were his parents or that he was part of our family. I couldn’t take him anywhere. Any time he left the house, he had to turn right. I remember taking him to the park and he started running. I kept calling his name but he didn’t look back once. If I hadn’t chased after him, I don’t know where he would have gone.
What was going on in your mind at this time?
I kept thinking that little boys with health issues have behavior problems and they outgrow them. But he kept getting worse. To be honest, I was hurting terribly inside. I knew something was drastically wrong but I didn’t want to face it. It was very, very difficult.
When did you get the diagnosis of autism?
When Billy was 18 months old, a health visitor [a healthcare professional who makes house calls] checked him and said, “Look, he’s not responding to his name. He’s not stacking blocks. He’s not doing anything.” It was true. He was just sitting there, oblivious that we were even in the room. Then she said, “I think he has autism.” I didn’t know what autism was so she told me to look it up. Then she walked out of the house. I remember sitting there, thinking, “How am I going to tell my husband?” I knew he’d be heartbroken.
What about you?
You feel… I mean… When you have a child who doesn’t respond to you in any way whatsoever…You’re feeding him and caring for him but he’s not giving you any response. Nothing. No eye contact. Nothing… I felt as if I had lost my child. Night after night, I listened to my husband crying on one side of the bed while I cried on the other side—but we didn’t talk. We just laid there, sobbing quietly as our son banged his head against the wall all night long.
Did you ever feel like giving up?
When Billy was officially diagnosed with severe autism, a doctor advised us that the kindest thing would be to put him in a facility and give our other children a good quality of life. But I couldn’t do that. I loved this child who didn’t love me back.
When did things start to change?
A neighbor slipped a newspaper clipping under our door that said a gluten-free, casein-free diet could help children with autism. When I showed it to my husband, his response was, “What a load of rubbish!” But I didn’t care. We had absolutely nothing to lose so I told him I meant to do it. I went to the health food store and bought some gluten-free flour. I became obsessed with looking at ingredient labels for gluten and dairy.
Was it difficult to change Billy’s diet?
At the time, he would only eat wheat cereal, milk and the occasional apple. He had terrible diarrhea so the doctor had said to quit giving him apples (even so, his diarrhea was still awful, like water). I realized that the only two things Billy would eat had to go. So I chucked every bit of gluten and milk out of the house. For two days, he ate nothing.
You mean he wouldn’t eat anything else?
Right. I had baked gluten-free cookies and tried him, literally, on water, rice milk and those cookies but he wouldn’t have them.
So he ate nothing for two days?
Yes. My husband was furious but I was determined. The article gave me hope when I’d never had any hope of anything helping. So I thought, I am going to do this. This child is going to eat this food! I sat with him for two days while he screamed, watched the high-spin washing machine, screamed and banged his head.
What a nightmare!
After two days, he got hungry and started to eat the cookies and rice milk. And this is the interesting thing—a couple of days after that, his diarrhea got much better. (I don’t want to be gross but the diarrhea was a massive problem. He was so thin with this awful bowel trouble and nothing was getting absorbed.) But the most exciting thing was he started to make some fleeting eye contact. It was just for a few seconds but it was a big difference that got my husband’s attention. He said, “Okay, I can see it.”
It was so exciting to think we might actually be able to help our child. So we threw ourselves into it. Jon ultimately went back to university and became a nutritionist. Over time, we learned that there were brilliant nutritionists and therapists doing great things for autism. To this day, Billy continues on a special diet and we’ve got a different child on our hands.
Is he still on the gluten-free, casein-free diet?
Yes, but we also have to be very careful with sugar. At one point, he was completely off sugar because he had a really bad yeast overgrowth in his gut. He moved from an obsession with wheat and milk to a sugar obsession. Remember how I made those lovely cookies? So he got addicted to sugar. We had to get him off sugar and introduce him to different types of food. It was really hard work.
How did you do it?
We took away the cookies and introduced carrots. He would scream and scream and throw a walloping fit. When he finally ate a carrot, he’d get a cookie. That’s how we introduced fresh vegetables one at a time.
Did you try vitamin supplements, enzymes, probiotics, behavior therapies, those sorts of things?
Yes, we’ve tried everything. But the best advice I can give from these past 14 years is there’s no point starting any behavior or learning therapy if your child isn’t well. Forget about the autism until you get the health problems under control. Get the body well and then you can work on behaviors. Once Billy’s diarrhea, rash and hair loss cleared up, he was in a position to start learning.
How’s Billy doing now?
He’s described as a high-functioning teenager with autism. He looks no different from any other child his age. He has friends. He’s above average for his age with technical computer games but his language is still not age appropriate. I never thought I’d hear my child speak at all—so he’s really doing very well. He can clearly say what he wants and tell you about his day.
Do you credit the diet for much of this breakthrough?
For Billy, the diet was the most important thing. It’s also what made us realize that we could get help for him. But I believe the diet is the most important thing that anyone can try. Parents have nothing to lose by putting their autistic child on a gluten-free, casein-free diet. I speak to many parents who say, “I tried the diet and it didn’t work.” I’m not saying it’s going to work for every child because there are different types of autism. But parents should really push through and give it a chance.
Parents will say, “I’m not doing this any more because it’s cruel. My child loves his wheat.” But sometimes kids crave the very thing that’s bad for them—so you have to be cruel to be kind. I know it’s hard but you’ve got to be strong.
Any other advice?
It’s important for people to know that what’s right for one child is not necessarily right for another. As one mother to another, the best advice I can give is to trust your instincts. I wasted so much time and energy trying out therapies for Billy when I knew in my heart and gut that it wasn’t right for him even though it worked for another child. If you feel something’s not right, don’t do it. Also, I think other autism parents are good people to trust in terms of getting help.
What would you say to someone who has a newly diagnosed youngster?
Know that there is so much you can do to help your child. So much. And all that anger and sadness you’re feeling? Put that energy into getting help for your child. The earlier you intervene, whether it’s health-wise or behavioral, the better the outcome for your child.
For more about The Autism File Global, visit autismfile.com.