I'm no longer feeling overwhelmed by all the information out there on treating autism. But I remember what it was like starting out with Nate, feeling like there was so much to learn but nowhere to start. Here is my primer on treating autism, including books I've read and treatments we've tried. (I'm writing this as much for myself as for anyone else; I like to get all these thoughts down in writing but also want a place to point people to if they come to me asking about the things we've done for Nate. I am definitely NOT an expert on this subject, but I've been learning a lot through research and through friends and acquaintances who have been through it too.)
First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.
What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.
"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).
Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.
Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.
Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.
Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:
- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!
Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.
Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.
GFCF Diet - Help with starting the gluten-free/casein-free diet.
Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.
Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.
Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.
Autism Speaks - Contains current news, videos, and research information.
* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.
2008 update
Nate has been full GFCF since December 2007.
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