This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Friday, August 13, 2010

Recovery from Autism Spectrum Disorders

The extreme irony of the fact that I have a child on the spectrum (formerly on the spectrum?) is that I worked with children with autism before having my own kids.  That was during the 90s, and back then I often had to explain that no, I don't work with "ARTistic children", I work with "AUTistic children", followed by a brief description of the rare disorder that few people had direct experience with let alone even heard of.  Back then, very few people said "oh, my sister's kid has that" or "my neighbor's kid is autistic too" or "last year there were two autistic kids in my kid's class".  Times sure have changed.  Now it seems that nearly everyone I know or meet has someone with autism in their immediate circle of family and friends.

My experience working with kids with autism has actually not been of much use in helping Roo, as I was an ABA program director, and have never felt that ABA was appropriate for him.  I still think it is an excellent option in many cases, just not for my son.  That is another post.  However, the real gift that my former career brought to us is that I knew recovery was possible.  I knew that most kids with autism would see significant improvement in their quality of life from appropriate and timely intervention, and that some would achieve a level of functioning that would make them indistinguishable from their non-autistic peers in every way.  What I didn't know when I started this journey with Roo was the means by which he would experience such remarkable progress. 

As I've done research throughout our journey, I have come across many recovery stories.  They have given me so much inspiration and hope.  These stories make clear what is possible.  No where is anyone claiming that recovery will happen for every child, but they are proving wrong the fundamental mainstream medical views about autism- namely that it is a permanent disorder that arises from abnormalities of the brain brought about by genetics.  These stories have been like friends- they have helped me feel less alone when the task at hand seemed overwhelming, reminding me that others have come before me.  If others could do it then so could I and so could Roo.  They have reminded me that while the parents have moved heaven and earth to bring resources to their children, it's ultimately the children that must do the really hard work.  They also kept my hope alive that I would someday know what was going on in my little boy's head. 

Here are some of the stories that I found so inspiring:

This is a local news piece about the recovery of Lori Knowles' son Daniel-

This is an interview of a mom, Leann Whiffen, whose son recovered.  She talks about autism being a multi-system disorder that affects the GI tract, the neurological system, and the immune system.  They did both ABA and biomedical with the help of Dr Jepson, a leading DAN! doctor.  She talks about the dilemma of wanting to try whatever her son might need to help him, but at the same time being cautious and carefully researching the options.

This is a video of Leann's son Clay that shows just how far he has come:

 This next video documents the recovery of Stan Kurtz' son Ethan.  For some reason Ethan's recovery story really captivated me, even though he was so different than Roo, which seemed to foreshadow Roo's major leap forward when given the same anti-viral drug, Valtrex.  Stan Kurtz is now the director of Generation Rescue and one of my personal heroes.

 Baxter's recovery from autism:

This is a short documentary that gives more details about Baxter's story:

This is a short film called "Finding the Words" about recovery from autism.  At one point, Dr Martha Herbert, a pediatric neurologist at Harvard Medical School says of the paradigm shift from "autism is a genetic brain disorder" to "autism is a whole body, medical disorder" that it is going from "seeing what you believe to believing what you see".  This is actually the short version of a longer film.

 Joe Mohs, who recovered from autism with ABA therapy, shares his story and experiences through the site joe' .  Here is Joe talking about his story...