Autism Recovery Story: Noah
Managing Editor's Note: This piece is part of a series of recovery stories presented by Generation Rescue. The introduction rings especially true to me. Two of my girls were diagnosed by a colleague of Dr. Max Wiznitzer at University Hospitals of Cleveland. He's the "expert" on autism in Cleveland, especially if you're a pharmaceutical company in a vaccine trial looking for an expert witness for the defense. We left that office with absolutely nothing except a bill and two little girls whose lives had just been written off by a neurologist. Seems it happens everywhere. And I'm sure it's still happening.
At the age of three, having come to the conclusion that our son would most likely be diagnosed PDD-NOS, we wanted to take him to "the best" doctors for their opinion.
We ended up at Johns Hopkins' Kennedy Krieger Center, seeing Dr. Andrew Zimmerman who was considered one of the leading autism experts in the country. This was the biggest waste of time and money we have ever invested in anything. Zimmerman told us Noah was probably mentally retarded, would never talk and would never be much different than he was at that point.
With a wave of his hand he brushed off aggressive therapies and the notion that vaccines could have caused Noah's misery. Treatment? Get therapy for YOURSELVES, he said, to learn to deal with what you have.
Noah is now 10 years old. To be sure, I would not consider him fully "recovered" -- yet. However, he has extensive expressive and receptive language (he can say anything he wants and we believe knows more that we can imagine). He has at least a normal to high IQ; his speech teacher cautioned us to "never underestimate his intelligence."
Noah participates in "typical" swim team, enjoys riding his bike and scooter, attends church choir, and does gymnastics. He recently won first place in the RA Pinewood Derby Car Race for our church and went on the win first in the entire Association. He loves books and reads well. He loves geography, knows all the states, can draw the US and label each state correctly, as well as name them aphabetically. His passion is drawing (and he's very good!) and music.
Treatment? Yeast overgrowth treatment, GFCF diet, Chelation, AIT, ABA, Speech and Occupational therapy, and Hyperbaric Oxygen therapy. The three most effective were Chelation, ABA and Hyperbaric (started only in Fall 07). We hope that hyperbaric, along with continued chelation, will help him jump the final hurdles to gain recovery.
I thank God often that my husband and I walked out of Johns Hopkins that day, looked at each other and said "NO WAY are we giving up", and promptly found a DAN doctor. An "expert" is not always an expert, particularly in today's medical community. In the life of an autistic child, the parent is the foremost expert! The above is just a short summary of the fullness of Noah's life. I could never describe how different life is for our entire family today than it was when we had that poor, frustrated, hurting, physically ill, non-verbal, misunderstood three-year-old child that we literally could not take anywhere. Never give up! Never give up!
This and other stories of recovery can be found on the TESTIMONIALS page at GenerationRescue.
I have a 5 y/o Autistic boy with Sensory Integration Disorder, Severe Apraxia, Gastrointestinal & Feeding Issues. All I know is when he was born, I was told he was a healthy baby boy, apgars 9/9. 2 years later he was diagnosed. My son is somewhere inside of himself and I want to pull him out. I believe and have hope that Biomedical & HBOT Treatments are the answer. Please visit my site for information on how you can help bring this into reality.
Posted by: Miriam | June 09, 2009 at 11:42 AM
Peter, you're kind to apologize. And I want to remind our regulars here, there's no need to go after Peter for his asking questions. He is a a person with Asperger's and is trying to learn. That's said, Peter, you're bringing up a lot of very out of date thoughts.
Peter, if smoker gets lung cancer, he blames cigarettes. And rightly so. Fifty years ago the connection hadn't been made, and he'd have been accused of looking for a scapegoat. Our readers aren't looking to place false blame. That's another "no no" in terms of judging us and I'm sure you'll take heat for it here. It's an argument used for a long time to belittle us and minimize what's happened to our kids. We no longer accept the argument, just as we no longer accept the refrigerator theory. Wanting answers is not the same as blind guilt filled blame.
Legal cases are now coming to the forefront on vaccines. It's that start of an acknlowledgement that there's something wrong with a product the entire world has embraced as a saving grace. And with good reason. No one wants to see a child die from a horrible disease. If only we put such energy into clean water and eradicating hunger in the world.
The point of Age of Autism is that we can recover, treat and/or help our children to live better lives. And I'm sure we can agree that that's a very good thing. If any think you read here helps your or your son, I'll be satisfied.
Posted by: Stagmom | October 07, 2008 at 06:05 AM
My profound apologies if any of you felt insulted by what I wrote.
Of course I understand that there are varying degrees of severity. It is also known that a child can have another condition as well as autism.
I can detect the deep parental upset and anger over the plight of their child.
I have worked with people who have suffered from tragedy, especially with children, including one group of mothers who have had a child murdered.
The mums who were suffering most, were those intent on fixing the blame.
They were carrying some kind of misplaced guilt for what had happened.
All I am saying, I guess, is that you make sure you look after yourself and your own health.
Posted by: Peter, London UK | October 07, 2008 at 05:35 AM
Peter - I don't BLAME the vaccinations for my son's autism, though I have often blamed myself for allowing him to get them. A lot of parents who know there is a link between their child's autism and vaccines know it because they SAW IT HAPPEN. They don't need a study to tell them that after their child had a shot, they immediately tumbled down a long steep hill. That is evidence enough for me. We aren't necessarily looking for someone to blame, but a lot of us would like some relief.
My boys both have asperger's, and so does my husband. There is no doubt in my mind that there is a genetic link too. But the one out of the three that got vaccines was horribly horribly sick, and there were a lot of long nights when I wondered if he would grow to adulthood, nevermind about the regression in development.
One really important point that a lot of people who aren't around anyone with severe autism don't get: your autism is not my autism. When my husband and I are with other parents and their children who are autistic, we know we have won the autism lottery. That is a sad prize to claim. But we truly thank god everyday that our sons will most likely get an education, hold jobs, own property and have families. I know it's politically incorrect, but we are so happy that our boys are "not that bad." We will have to continue to work our backsides off to get there, but there are a lot of autism parents that would love to trade places with us.
My son, for instance, is verbal enough to tell you that he wishes he didn't have autism. Some of our friends' kids would probably like to say that too, if only they weren't busy hitting a brick wall.
We aren't looking for perfection, and neither are they. Not every autistic is a savant. Not every person with asperger's is a genius. Far too many people have a romaticized notion of what it means to have a disability. Not everyone has the spirit to overcome. I'm an optimistic person, but sometimes disability just plain sucks.
I might be just your very average neurotypical, but one in ninety four boys sounds like an epidemic to me.
Most of us don't have time to invest our energy in embarking upon a crusade against vaccines, we are too busy taking care of our high need children, trying to maximize what potential they have left. I, for one, appreciate every person who does take the effort to try to discover causes, and possible solutions for the rest of us. We need them.
Though I haven't taken a poll, I'm pretty sure we all DO love our children. Even the abnormal ones.
And I'd be glad to get therapy, but then what?
Posted by: silk | October 07, 2008 at 02:32 AM
So, Peter, should we fortify random lots of vaccines with neurologically damaging agents and teratogens to ensure neurodiversity. Shall the children with MTHFR genes just suck it up and take one in the brain for the team?
(It's one thing to accept my son as he is, and it is another to accept a government mandated brain damage as an act of god.)
Posted by: TexasDad | October 06, 2008 at 11:45 PM
OK, Peter, let's try this again since you don't seem to be getting it. "chronic gastrointestinal pain, constipation,life-threatening food allergies, chronic sinus infections,severe anxiety, OCD, ADD, sensory integration disorder, transient synovitis, learning disabilities, executive functioning impairment, poor motor planning, impaired judgement, and yes, "social naivete," just to name a few things."
Does this sound like a child who is just "different?" My daughter is SICK. She SUFFERS every day of her life. What part of that don't you get? You say your life hasn't been easy, but then you judge us when we want to make things better for our kids.
Who the hell are you to accuse me of being angry at not having a "perfect" child and of not loving my child? That's just obnoxious. Incidentally, when I adopted my oldest child, a three-year-old boy, he was believed to have autism. I knew this up front before I even began adoption proceedings. As it turned out it wasn't autism, but rather post-traumatic stress disorder from being abused by his birth mother. He's perfectly fine now, healthy and well-adjusted and a recent college graduate, but his future at that time looked very bleak, so don't accuse me or anyone here of anger over "imperfection." I'm sure you know as well that you and your wife are not the only ones who have ever turned down prenatal testing. I was thirty-seven years old when I was pregnant with my daughter, and I was under heavy pressure to agree to all kinds of testing. I refused because I was determined to have my baby no matter what, knowing full well all the risks. She was born healthy. Thanks to a ridiculous vaccine schedule, that's no longer the case. So yes, I'm angry. Very angry that she has to suffer, and angry at people like you who for some unfathomable reason don't want her to recover.
And for Noah's family, thank you for continuing to bring hope to families that desperately need it. Recovery is not out of reach, and I'm thrilled for Noah and for you as well.
Posted by: PhillyLisa | October 06, 2008 at 10:36 PM
hi Peter: i think what you are missing here is the huge variability of things that are called autism. My neighbour has an autistic boy,now a teenager, and unfortunately he is not "just fine" and never will be.He is about 16 ,I think he is potty trained now.He cannot talk, and flaps his hands making a high pitched shrieking noise as he walks.His Mom does his best to keep him fit, though the time when he was at the public swimming pool, had a melt down and picked up a chair and looked like he as about to smash the glass table there, was scary.( he is a large heavy 16 year old).His mom loves her son dearly, and is trying to teach him how to open cans of soup so he can cook.She has taught him sign language, and he sometimes signs a bit.There is no other comunication for him.She is terrified of dying because she knows he will be put in an institution.
You are no doubt right that your slightly socially inept, bright, verbal son is going to be just fine. Maybe you should talk to my neighbour before you send out the thank you cards, however.
Posted by: hera | October 06, 2008 at 07:07 PM
I am very sad about how you received my comments.
I was brought up in Liverpool, at the time of the Beatles, and saw life in the raw.
The fact is that midwives were the social engineers of my childhood.
Babies who were, let's say, impaired, were smothered.
To Philly Lisa. Investigate the sinusitis. There is a link.
I have autism. I have had a difficult life.
I spent 50 years blaming myself for my condition.
When my wife was pregnant with our first child we had a scan which suggested he might have Down's Syndrome. We stopped further tests.
Not out of any religious conviction, but out of a joint decision that we would face together anything that life would throw at us.
I am sorry about the anger you feel about not having a "Perfect child".
It is not your fault and there is no evidence that it is anyone else's fault.
Please, stop looking for blame.
Your child is YOUR child. Your child needs your love.
Your child is not abnormal. Your child is just different.
Any part of your being that embarks on a crusade against vaccination will not help your child.
So what? If your child is "different" he or she wants you to be there for them, not tilting at windmills.
Oh, and by the way, my life is not perfect.
Posted by: Peter, London UK | October 06, 2008 at 05:31 PM
Gee thanks, Peter. Your comment just reminded me that I'm way behind in helping my daughter to write thank you notes for birthday gifts. Might as well just add one to Merck and thank them profusely for nine glorious years of chronic gastrointestinal pain, constipation,life-threatening food allergies, chronic sinus infections,severe anxiety, OCD, ADD, sensory integration disorder, transient synovitis, learning disabilities, executive functioning impairment, poor motor planning, impaired judgement, and yes, "social naivete," just to name a few things. I'm sure I have so much more to thank them for.
Posted by: PhillyLisa | October 06, 2008 at 04:54 PM
Peter, you sound like a nice man. I'm happy you're satisfied with your life - what more could any of us wish for? However, your coming in here and telling us there is no autism epidemic is a large insult to us. And you have no business declaring that vaccines have nothing to with with autism. That my be your opinion - but it is not fact. Our children are badly damaged. Badly. My girls would be dead inside of an hour "in the wild." That would hardly seem to propagate the race. The autism we live every day is as big a disability as Big Ben is a clock.
I understand you have Asperger's, so let me put this in black and white for you then. Do not come into Age of Autism to tell us we are wrong about our own children. It's very rude. There's no need to respond to me further with several explanations of what you've already told us as I'm sure is your instinct. I let you comment. Once. Good day.
Posted by: Managing Editor | October 06, 2008 at 04:03 PM
I read you story with interest.
I was diagnosed with Asperger's two years ago at the age of 50, soon after my son, aged 7, was diagnosed with the same.
We have a family tree (and history) that goes back to around 1200AD.
In the history, there is a constant theme of autistic-like behaviour.
We put our son on Ritalin for a short while and moved school which seemed to get his emotions in some sort of order.
I have been able to help him, because I see his childhood as my childhood. I can help translate for him and his teachers, as well as his mum.
He is turning out fine. Just as Noah will turn out fine, because he has parents doing the right thing for him.
It took my wife a long time to understand my positive attiutude to his autism.
What some might say is social naivety in my son, is his greatest gift.
He is not socially Naive. He is honest and truthful and he has a strong sense of justice - very common traits.
Autism, unless it is combined with some other congenital condition, is not a disability.
It just means that the child needs help in some areas he finds difficult. He faces hurdles, not a brick wall!
As I keep saying of my son, he will eventually learn everything, but not in the order the education system says that he should.
There is no autism epidemic. I had some lucky breaks as a child and had a successful career.
Autism has been diagnosed for many, many decades.
However, the diagnosis used to be that the child was "Backward and stupid."
It has nothing to do with vaccines.
The human race has always needed people who are smart and can think differently. Autism is a genetic mutation that keeps our species viable through the power of an alternative intelligence from the herd.
However, the mutation is not a perfect device hence the wide range of severity on the spectrum.
How far would we have got if we all had the exact same way of thinking?
Just imagine the scene in a cave 300,000 years ago. A little boy is sitting there watching his clan pick nits out of each other's hair - as they had done for 100,000 years.
Suddenly the little boy gets restless and ventures out of the cave to discover fire, invent the wheel or develop a Theory of Relatively.
So what about vaccination? Edward Jenner discovered vaccination. It is said that he was autistic.
He noticed that milkmaids had pure complexions while most people were riddled by the pox.
From that he figured out that if he gave you a small amount of the pox, it would stop you getting the pox!
How dumb is that?
He was derided and ridiculed. But that "alternative mind" has probable saved more human suffering than any other mind.
He was also the first person to identify and record the mating habit of the cuckoo.
Sounds to me that you have a fine son who is going to be a good, considerate and interesting human adult.
As for me. If it did turn out that a vaccine caused my son's autism, I would write to the drug company thanking them for helping to make my lovely and caring son who he is.
Posted by: Peter, London UK | October 06, 2008 at 03:40 PM
Congratulations on all the improvements that your son has made. I hope they continue (with no setbacks) until he is fully recovered. It's always good to hear stories like yours - they can help us get through the bad days that we all have with our children.
We recently took our daughter to Kennedy Krieger to see Dr. Zimmerman (not for a diagnosis). He has improved since you saw him - he advised us to increase one of our daughter's supplements, and he didn't criticize anything we were doing biomedically. In no way was it a bad experience. I hope more of the doctors who have the kind of negative view that you have described (as well as others that don't listen to parents) can change as well.
Posted by: Carolyn M. | October 06, 2008 at 11:45 AM
What a touching story.
I was absolutely appalled when I read this statement, "Get therapy for YOURSELVES, he said, to learn to deal with what you have." I don't even know what my reaction would had been had I'd been in these parents' shoes. I haven't always been holistic, so I'm quite certain it wouldn't have been a peaceful one.
It is reassuring to read stories like this one. It renews my sense of hope in my son's recovery.
Thank you for sharing.
Posted by: Adonya Wong | October 06, 2008 at 10:45 AM