I have been drafted into an army that most of you have never heard anything about. If you are really lucky, you or one of your own daughters or granddaughters won't be drafted, too. The odds keep shifting against you, though.
I am one of the "Band of Mothers" fighting a war to recover our children from autism. I am fighting with millions of women (and men) all over the world-- mothers and fathers most of whom I have never met. Every day we search the internet, read through countless books, magazines and medical journals, talk for hours with unfamiliar comrades we have made on this unwelcomed journey-- comparing notes, digging for clues-- searching for a way to bring our children back.
As a filmmaker, I felt my first unique contribution to the Band of Mothers (in addition to my primary role as my own daughter's advocate, teacher, chemist and champion) would be to give hope to all of the families out there who had decided to take up the fight against autism. To let all of us in the trenches know that so many doctors, medical journals and government institutions are wrong about our children. They are not tragedies to be dismissed. They are sick children who can be made well again.
Early in my research for the film, one of the mothers in our anti-autism army sent me this email about her son:
"...My child is ill. Extremely ill. Oh, he has all the hallmarks of autism; no eye contact, no speech, preservative behaviors, no social skills, tactile defensiveness...But far more egregious for us, his parents, are his health problems. The ever-persistent diarrhea (he stools 30+ times a day...bright yellow liquid. We counted!), eczema, reflux, ear infections, bladder infections, kidney infections, allergies (Oh sheesh! So many allergies), sleep problems, rashes and on and on. This is hard-core-full-on misery...I don't know one mother or father that would knowingly go on allowing this to happen. That would not try to somehow alleviate some of this pain...for there is no other word for my son's life. Pain."
For now, autism is winning this war. It is stealing away 1 in every 150 children. One child every 22 minutes. Our children are being diagnosed with what they call "full-blown autism"-- not speech delay, not ADD, not "quirky, eccentric personality" disorder-- autism, for which most textbooks, most doctors, still claim there is no cure. There is no hope.
"You can't tell me that there is nothing for my child!" exclaims one of the mothers in "Finding the Words", the powerful documentary film I have taken eight years to produce about children recovering from autism.
I have learned that it is a controversial premise: autism recovery.
But I have seen, with my own eyes, children who were severely autistic (one of the "stars" of my film was assessed by a multi-disciplinary team at UCSF Medical Center and pronounced the 'lowest 2 percentile--so 98% of the children with autism that they had seen were better off than this little guy) get completely well. He is in regular school. He has friends. He has a fabulous sense of humor. Amazing empathy. He's a gifted student now...one who is still on an entirely organic diet supported by vitamin supplements. His autism is gone, as is his long-time serious bowel illness. It's hard for people who meet him to believe that he was ever considered autistic. But in the film you will see all the reports from the doctors, therapists, educators, psychologists confirming that early diagnosis.
His determined mother did not listen when the doctors recommended that she place her child in an institution. Instead, she fought to change the future for her son . She won her war against autism. She, and seven other mothers and fathers like her, inspired my film about recovery. It's the powerful story of families who refused to give up on their kids.
Happy endings do happen in autism, but our exponentially-growing army must fight long and hard to make them happen. Here's a much-later email from that same mother whose son was once so sick:
"...All of his old afflictions have disappeared. No more diarrhea or allergies. We haven't had a ear/bladder infection in years, no skin rashes. Nada.
Oh, and by the way his autism is completely gone too. He has been evaluated and re-evaluated and in no way qualifies for any services nor displays any autistic characteristics. But there is more to it than that. He is happy. He is healthy. He displays pure joy on a minute to minute basis. He has friends. He is a welcomed and exuberant member of his regular classroom. He is capable of being devious or even lying. He loves. He fights. He cries. He hugs. He snuggles. He desires to win. He has hopes and dreams. He tests. He seeks comfort and praise. He imagines. He learns. He is seven...He is everything I desired he could be when I was told to expect he never would."
So my question as a filmmaker and as a long-time member of the Band of Mothers is this: If these children can get well, why can't my daughter get well? Why can't every child get well? Yes, the mothers in my film were relentless. They refused to accept a limited future for their kids. It took many years of excruciating effort to heal their children...and they would do it all again in a heartbeat. How they got their children well is what my film is all about. And yes, that information is controversial, too.
Maybe the bigger question is a question for all of us who care about the lives
of all the children of the world, and of the children who will someday be born to those children: How can we do nothing in the face of such a horrifying epidemic? How can we possibly do nothing when my film is proof that there is something we can do?
Autism is a complex, multi-factorial disease, and each of these kids
has had a different pathway to recovery. Some are completely there,
and often turn out to be gifted kids, and some are still on the road.
The oldest child in my film just started talking at 15. The oldest
person I heard of (from his sister) has begun to speak at 40 after
having a diseased piece of his bowel removed while on the Autism
Research Institute's (ARI) DAN protocol; he started on it at 37 after decades of institutional care.
If you are one of the Band of Mothers you never give up on your children.
With some good science that studies these recovered kids (ARI has a list of well over a thousand families with children who have recovered who are willing to talk to media), we can begin to chart treatment paths based on what's working for these remarkable children. Take a load off all of the parents who are already so overwhelmed, and let the health care system start to heal these kids with our help.
I believe with all of my heart that it's possible. I believe it is happening now. And it will take all of us--parents, doctors, researchers, educators, therapists, government agencies and big business-- to give as many children as we possibly can the healthy lives they deserve.
The Band of Mothers will accept nothing less.
To read more Mother- Daughter posts, click here.