I just returned from the AutismOne/Generation Rescue conference. As I sat through one session after another and talked with parents, grandparents, and professionals, I was constantly amazed by two things. The first was the unwavering determination of the parents in their fight to recover their kids. And a fight it is, or—more accurately—a war, as Dr. Wakefield said in his presentation. These parents are motivated by the love they have for their children, and that love doesn’t come with a price tag. Their search for a cure and justice is worth more than anything in the world to them.
The second thing that impressed me was their knowledge. I’ve known for a long time that parents of children on the spectrum are smart. But they’re not just smart. They’re brilliant. And they’re brilliant because they have to be. They have to do their own research to put the pieces together and do whatever it takes to make their children well again. I personally believe that it is not possible to find people who can hold a candle to parents who are bound together by a devastating illness like autism.
Drawing from the conference—and from my own experience helping my grandson Jake recover—I offer you five ways to immediately start helping your child with autism and, in the process, help other children and their families.
DON’T GIVE UP
I’ve said before that all the stories I’ve heard about autism are almost identical. A perfectly normal child gets a vaccine and regresses into autism. The journey may differ, but the main statement, “My child got autism from a vaccine,” is the same.
The stories of recovery are also very similar. The therapies and treatments vary, but the fact remains that child after child is recovering from autism. One parent I spoke with at the conference said she utilized numerous methods with her son, including the GFCF (Gluten-Free Casein-Free) diet, ABA (Applied Behavior Analysis) therapy, HBOT (Hyperbaric Oxygen Therapy), the Son-Rise Program, and chelation. She saw dramatic improvements with all of them. Her son, who hadn’t spoken in three years, is now beginning to talk. He is learning to read. He is making friends. Another parent used HBOT and ABA, as well as methyl B12 shots, Floortime, and the SCD (Specific Carbohydrate Diet)—with similar results. Her son is now talking, reading and writing, and making new friends. He has even lost his label.
I heard dozens of stories of children who are recovering through biomedical and behavioral therapies or a combination of both. In addition to the ones I’ve already mentioned, many parents I talked to also reported success with sensory integration training; the use of Probiotics, amino acids, omega-3 fatty acids, enzymes, and vitamins such as D3; osteopathy; chiropractic; and cranial sacral therapy.
A common thread in the parents’ stories was that they tried numerous therapies—but only one at a time. That way, they knew if something was helping. And they gave each one a fair chance—say, a month or two—before adding the next one. Sometimes their children experienced negative side effects with therapies such as detoxing but, more often than not, if they stuck with it, they soon saw the positive results. They also recognize that all children are not the same. What works for one child may not work for another.
Recovery means different things to different people. For some, it means losing the autism diagnosis. For others, it means dramatic improvement—a few residual symptoms but, for the most part, typical. And for still others, it means that, after months or even years, their child says, “I love you,” for the first time or potty-trains or learns to dress himself. Whatever recovery means to you, remember that it is a process. It takes time. It takes effort. It means being open to trying whatever it takes to get your child back. Because not trying is not an option.
DON’T SHUT UP
You have seen what a vaccine did to your child. And you have seen what can happen when you use biomedical and behavioral therapies to treat autism. You have an obligation, a responsibility, to give others the opportunity to hear the truth and learn from you. Talk to anyone who will listen. Friends, family members, local media, national media, your congressmen. Share records of the diagnosis, symptoms, and therapies and results. Share before-and-after videos of your child if you have them. Write about it, blog about it, tweet about it. Whatever you choose, just do it. With the Internet, there are no limits.
Be prepared to hear that you’re crazy, a member of a cult, and ignorant, and you’re putting other children at risk by not vaccinating yours. Don’t stop talking no matter what people say to you. You know what you saw. You know why it happened. Tell the world.
Finally, don’t forget to report your child’s vaccine injury to the Vaccine Adverse Event Reporting System (VAERS) at www.vaers.hhs.gov. Don’t wait for your doctor or the hospital to do it. Won’t happen. You have to do it.
It’s normal to feel anger when your child is suffering from autism and you know it could have been prevented. And you know that our doctors and government are responsible and won’t admit it. They deny any connection between vaccines and autism. They won’t fund studies on vaccine safety. They won’t mandate insurance coverage for treatments that are helping children recover every day. In short, they won’t help you fix what they caused. How could you not be angry?
Anger, although it can be an initial empowering emotion, can slow you down if you hold onto it for long. Don’t wallow in it. As Jenny McCarthy said at the conference, get past the anger, and move forward. Believe that you can make a difference. More than one national autism organization began as a small support group. A small group of parents who got together because they needed someone to talk to. They needed advice. Coping techniques. And now they are stronger and changing the lives of many children and their families. They are offering hope where there was no hope.
DON’T GO IT ALONE
Having a child with autism can be lonely. Often, family and friends gradually fade out of the picture, unable or unwilling, or both, to be there for you. A support system is critical when your child is on the spectrum. There is help available, and you really don’t have to leave your house to find it. Again, the power of the Internet. Go online and search for organizations like AutismOne, Generation Rescue, the National Autism Association, the Canary Party, and Thinking Moms Revolution. There are more, and I couldn’t possibly list all the amazing groups out there. Just Google “autism organizations,” and you’ll find them. Sign up for their emails and blogs. “Like” their groups on Facebook.
Speaking of Facebook, what an incredible source of support. Send friend requests to others in the autism community. They’ll accept in about five minutes. You’ll soon have instant contact with parents who walk in your shoes every single day. Trust me—you will be lifelong friends who can talk about anything. And you will soon be friends with their friends and their friends’ friends, until you have more friends than you can count. It’s like having an extended family. A family that doesn’t judge you or criticize you or try to make you feel guilty. A family that will build you up. That will celebrate with you when your child reaches a new milestone, no matter how small, and will offer you encouragement when he takes a step backward. And, before long, you will find yourself doing the same. You will be helping others and giving them hope, and that can be very healing for you.
DON’T LET YOUR CHILD DOWN
It’s been said many times that you are your child’s strongest advocate. You love him more than anyone. You know him better than anyone. He depends on you to be sure his needs are met. He counts on you to find him the best doctors and therapists. To fight for the best possible environment at school. To help him make friends. To provide him with a healthy diet and a predictable and safe routine.
For your child with autism, the world can be chaotic and scary. He probably has sensory issues that keep him in a fight-or-flight mode. Everything’s too loud or too bright. If he’s non-verbal, nobody understands him. He can’t make himself heard. He can’t ask for what he wants or needs. Everything is out of control.
Knowing you love and accept him unconditionally will make all the difference in your child’s day-to-day battles. When I say accept your child, I don’t mean to give up and stop reaching for recovery. I mean to show him kindness, patience, and respect, and to keep plugging along in spite of setbacks, exhaustion, and feelings of hopelessness. One day at a time. One hour at a time. One minute at a time. Whatever you need to do to keep going.
A HUGE THANKS
I want to thank all the Autism One/Generation Rescue conference presenters and attendees who are doing something. You’re speaking out, loud and clear. Keep doing whatever it is you’re doing. Because in the end—at the risk of sounding corny—the truth will prevail. And then, maybe, just maybe, the insanity will stop.