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Autism resources for parents and kids

These were some resources I found most helpful in our journey with Sam

Not Autism: The "Neuro Immune Dysfunction Syndrome (NIDS)" theory (this is a a recent to an article that discusses it) helped me understand why this "new" autism looked nothing like the traditional version of autism. I (and apparently a lot of other people, including many doctors) don't believe it is autism. For one thing, there's no such thing as a genetic epidemic. For another, what's with all these related intestinal issues? I do believe autism is a helpful label, because you can connect with parents and resources. But the related biomedical issues and remarkable recovery of hundreds of children diagnosed with the "new" autism cannot be explained under the classic autism definition.

Bike Riding Lessons for Kids with Special Needs: Lose the Training Wheels.org. Sam participated in a camp sponsored by the Portland, Ore., version of this, Bike First! and the people were awesome! Lose the Training Wheels teaches kids with special needs how to ride a bike. Bike riding requires a lot of motor skills working together. Lose the Training Wheels uses special bikes with progressively smaller "rolling pin" type of training wheels, requiring more balance each time. Over the one-week camp (for a couple of hours a day) the kids progress. It's amazing to watch a kid who never thought he or she could ride a bike learn how! It's a rite of passage for children, and one no child should miss out on.

Why Biomedical Treatment Helps Children Diagnosed with Autism: an article (.pdf)

A Link to Doctors who have been trained in the Defeat Autism Now! protocol. Whether you work with an M.D. or a naturopath, find a doctor known in your community for treating children on the autism spectrum disorder, and one trained in the DAN! protocol. A traditional medical doctor untrained in DAN! has been trained to treat autism as a psychological, genetic disorder. This attitude will do a huge disservice to your child.

Autism Research Institute: This is a great organization and a great resource for parents. You'll find just about everything you need right here! Unfortunately it is not very user-friendly for parents, and they continue to use the phrase "autistic child," two reasons I created this site. It is an institute, and as such tries to be everything to everyone (physicians included), so it can sometimes be difficult to find information here.

And one great "first steps" article from the Autism Research Institute: "What Would I do if I Were The Parent of an Autistic Child? by Stephen Edelson, M.D., who has treated children on the autism spectrum for 30 years.

 

 

 

 

6 autism-related books I recommend

In the beginning of Sam's diagnosis, I bought every autism-related book I could get my hands on. Some were garbage. Most helped some. The following books helped tremendously.
  Written by a mom whose own child is on the autism spectrum, Lisa Lewis, Special Diets for Special Kids is a great resource for parents who decide to try the gluten-free, casein-free diet. It explains how to make substitutions for any recipe, and offers lots of kid-friendly recipes.
  Facing Autism was very helpful when I struggled with some of the concepts of applied behavior analysis (ABA). It details one family's ABA story and strongly advocates ABA. I believe ABA is very powerful, and can have tremendous results. I also recommend RDI and Floor Time. Whichever method you choose, it is important to find a great practitioner who really knows their stuff. That is far more important than which therapy you choose.
 


Children with Starving Brains was written by a physician whose daughter was severely affected by autism. If you are struggling over whether to try the GFCF diet, this book should convince you. It's full of valuable information about why the GFCF diet works. Please ignore the bizarre "dolphin" section from Dr. McCandless's husband in the back of the book. It is a completely inappropriate addition, in my opinion, and does a discredit to the rest of this noteworthy book.
  10 Things Every Child With Autism Wishes You Knew: This book will give you hope when you've lost yours, a reason for patience and understanding when you're at the end of your rope, and the words to use when trying to help others figure out why your child behaves the way he or she does. First and foremost, you do not have an "autistic child." You have a child. This book should be given to everyone who works with, teaches or loves a child who has received an autism diagnosis.
  Thinking in Pictures: I would recommend anything Temple Grandin has ever written. Temple is an animal behavior specialist who travel extensively and is in high demand for speaking engagements and consultations with farmers, livestock breeders and the like. Temple has classic autism, not regressive autism as I believe a lot of our children have. But she helps explain a lot of the sensory issues our children on the spectrum seem to have. And her tremendous success in life and her poised, patient and matter-of-fact explanations of how she deals with autism are a blessing to behold.

 

I am not positive that vaccines cause autism, or even that they are the major environmental trigger to a genetic predisposition. What I do believe though, is that it is vital for parents of children on the spectrum to arm themselves with as much information as possible. I've seen Dr. Stephanie Cave speak at the DAN! Conference and she is credible, compassionate, and smart as hell. I highly recommend What Your Doctor May Not Tell You About Childhood Vaccines.

 
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