http://thinkingmomsrevolution.com/things-i-wish-everyone-understood-about-autism-my-child-and-me/

Things I Wish Everyone Understood about Autism, My Child, and Me
Posted on December 29, 2014 by Thinking Moms' Revolution

I understand that my child really had encephalopathy and mitochondrial dysfunction, but he is still officially diagnosed with autism, and I need that label to get treatment. So autism it is. Until it isn’t. A lot of us are like that. I like the idea on the website “STOP CALLING IT AUTISM,” but that is what doctors, schools, therapists and everyone else we encounter calls it. I’m not fighting that battle today — I have another calling — but I am glad there are people out there that are. It really should be called what it is.

At first I really hated autism. I was at war with it as a dead-end diagnosis. And by dead-end, I mean that the developmental pediatrician basically told me there was nothing I could do, nothing that would help his drooling, head-banging, and constipation, and to join a support group to “get through it.” What I have come to understand is that I do not hate autism. At all. And I definitely do not hate PEOPLE with autism. At all. What I do strongly dislike are doctors who do not have enough experience to know that there is a lot of hope out there and that children like mine can get better from symptoms often associated with autism. And do.

When I say my child will recover from autism, that is not a slight to anyone who identifies themselves as autistic. I wish that the neuro-diverse population would understand that if my son functioned in society as well as they (as a generalization) do I would be the happiest person on Earth. REALLY. I would do a Julie Andrews on a mountaintop. I embrace all his unique qualities. I celebrate what makes him special. He flat out amazes me each day – really. I love every single bit of him. I do not want to make him dull and normal in the worst sense of that word, BUT if I had not intervened I’m not sure he would even be alive at this point. He had seizures, severe malabsorption and nutritional deficiencies, and the two sides of his body did not work together – he couldn’t jump. He had severe reflux and vomited after every meal. Sometimes he vomited bile. I thought he was deaf – I tested three times. He never burned or tanned. The sun really bothered his eyes and, oddly, he sneezed in the sun too. He was severely constipated no many how many jars of prunes I fed him. He looked like a child on a hunger poster from a third-world country. But I fed him and fed him – he just couldn’t process any of it. His liver function was so low that every doctor was amazed he functioned at all. His head swelled up after his well-baby visit: He was in the less than third percentile for height and weight (he was a twin), but overnight, his head circumference went from the fifth percentile to the sixtieth. He banged his head over and over to get to sleep.

And that still haunts me. It has been years since he banged his head in pain, but a few months ago he was frustrated and banged his head on the wall. I literally had a PTSD episode. I could not breathe and had a hard time keeping it together at work that day. Every once in a while, that happens. It’s scary when it does. It bothers me how close to the surface those feelings still are.

When I tried the diet – the one that my pediatrician and the developmental pediatrician said not to try – my son turned to his name for the first time. And his severe reflux disappeared overnight. I knew then that I could get him back. And when I say “get him back” what I mean is this: I had a child that was in severe pain. His body did not function properly. He had a laundry list of medical issues. I knew then that I could treat those. As each medical problem resolved, he made great gains and a little bit more of him shined through. I do not want to squash what makes him, him. EVER. I love this child more than I can ever convey in words. He is love and light personified. Quite literally, I believe, an Angel on Earth. He is goodness and pureness defined. He is so much a part of me and he has taught me so many things: patience, appreciation, acceptance, awareness, perseverance, determination, and pure, blissful joy. To watch him finally say Mama at the age of four – there are few things that have ever come close to that beautiful, beautiful moment. Because of him, I have made the most amazing friends who share similar experience. I have become a better person. A much better person.

I do not want to “cure” my child of autism. I do, however, want to continue to solve the medical issues he has. So far we have solved for seizures, malabsorbtion, liver function, constipation, elevated nagalese and viral issues. We have healed his gut. He no longer bangs his head or lies over the arm of a chair to give his stomach some relief. He has better oral tone, and he no longer drools. He has great eye contact and is cuddly and loving. He plays with his sister and brother. He is really smart, and at five he is reading and knows all the things he needs to know in kindergarten.

But we are not finished yet. His most pressing issue now is apraxia. He is at or above age level receptively, but expressively he is nowhere near where he could be. Where he will be. He can sign to communicate, but I know he wants more. He communicates with me in many other ways, and I know with every fiber of my being that he wants to experience speech...

<>

Martha Herbert ?@marthaherbertmd Feb 20 2014
MT - Beyond Hopelessness: Autism as a complex, chronic, whole-body disorder (not a permanent, brain-based trait)

Retweeted by Autism Revolution
Healthy U NOW ?@HUNFoundation May 15 2013
New detailed article on diet and autism in Journal of Child Neurology- by Drs. Martha Herbert and Julie Buckley! pic.twitter.com/2poXsb3TIJ

[img][/img]

http://www.eurekalert.org/pub_releases/2013-01/niom-sdt011413.php

Public release date: 15-Jan-2013
NIH/National Institute of Mental Health

Study documents that some children lose autism diagnosis
Small group with confirmed autism now on par with mainstream peers -- NIH-funded study

Some children who are accurately diagnosed in early childhood with autism lose the symptoms and the diagnosis as they grow older, a study supported by the National Institutes of Health has confirmed. The research team made the finding by carefully documenting a prior diagnosis of autism in a small group of school-age children and young adults with no current symptoms of the disorder.

The report is the first of a series that will probe more deeply into the nature of the change in these children's status. Having been diagnosed at one time with an autism spectrum disorder (ASD), these young people now appear to be on par with typically developing peers. The study team is continuing to analyze data on changes in brain function in these children and whether they have subtle residual social deficits. The team is also reviewing records on the types of interventions the children received, and to what extent they may have played a role in the transition.

"Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes," said NIMH Director Thomas R. Insel, M.D. "For an individual child, the outcome may be knowable only with time and after some years of intervention. Subsequent reports from this study should tell us more about the nature of autism and the role of therapy and other factors in the long term outcome for these children."

The study, led by Deborah Fein, Ph.D., at the University of Connecticut, Storrs, recruited 34 optimal outcome children, who had received a diagnosis of autism in early life and were now reportedly functioning no differently than their mainstream peers. For comparison, the 34 children were matched by age, sex, and nonverbal IQ with 44 children with high-functioning autism, and 34 typically developing peers. Participants ranged in age from 8 to 21 years old.

<>