On Media: Autism Speaks, Beating "Awareness" to Death
When Autism Leads to Advocacy

Father and Son Warriors: David and Andrew

Andrew1_2By David Atkinson 

I will never forget that Friday, five years ago, when I received the official diagnosis of Andrews autism.   I could have sworn I saw tears being held back in Dr. Green-Snyders eyes as she coolly gave my wife Tammy and I the bad news. 
    
Dr. Green-Snyder, a well known local expert on autism, was the first to help us rescue Andrew, age 2-1/2, from his world of frustration and isolation.  She was quite detailed in her analysis. But, in retrospect Tammy and I were all but clueless to what she said – and had no idea about what we were about to get into.

Tammy, the optimist in the family, tried lamely to put a brighter face on things.   On the long drive home from Detroit, she said:  “it will be ok, its just some sort of minor learning disability.” 

I have always been an internet nerd and it was natural for me to get to the bottom of this problem through research.  I was shocked with what I found.  Autism is a lifelong disorder that effects a childs ability to learn, communicate and socialize.  There are many associated physical issues that can come along with autism.  People with autism can be quite intelligent but their disability makes it difficult for them to ever live independent lives. 
I was in disbelief as I frantically went from web page to web page to find a different answer.  The house was quiet as I stayed up most of the night trying to find the fix.  There was no fix.  There were many tears shed in our family over that weekend.  I had been hit by a semi-truck loaded with bricks and I wasn’t sure I could get back up.  (unfortunately this was the one of the first articles I found that night (HERE).

I did eventually get back up.  I said there is not a cure for autism.  This is true BUT there have been a few thousand documented recoveries for those that have been willing to change their entire life.  This is the gamble of all gambles.  This is the largest mountain one will ever climb with no guarantee of ever reaching the summit.  If you are willing to lay out giant amounts of money, work your 2 year old child 40 hours a week in grueling therapy,  endure the torture of restrictive diets all while getting prodded and poked for years with needles, then, with only with a 5% or less chance is there a hope for a recovery.  As only a father can understand, those odds were good enough for me.  We had to go for it.  My wife immediately left her career in purchasing to lead up our in-home therapy team.  I learned everything I could about autism with a focus on biomedical treatments.  To be honest, plotting out Andrews recovery was more like a lab mouse going after cheese in a complex maze designed by an evil scientist.  Trial and Error and perseverance were his only hope.

Andrew, now age 7, is a really special child.  His bright blue eyes and quick smile will light up a room full of people in a matter of seconds.  His confident demeanor and unbridled enthusiasm is unmatched.   Its hard to imagine more charisma coming out of even the Dalai Lama.  It hasn’t always been this way.  Andrew started out as a normal happy baby full of love.  His childhood development for his first 16 months of life was normal and unremarkable.  Something went wrong.  He started to quickly regress, losing all language, and not wanting to socialize.  He was extremely temperamental and would bang his head upon any surface at the slightest point of frustration.  The headband of bruises he wore was very heartbreaking to see.  Andrew was asked to leave daycare at 27 months of age.  Tammy and I knew something was wrong but this was a major wake up call for us.  After a futile string of visits by pediatricians, neurologists, and school professionals, we finally figured out the issue with Dr. Green-Snyder.
   
There are several approaches to helping a child with Autism Spectrum Disorders.   As little as ten years ago, the main approach would be public school special education programs followed by a lifetime of adult care.  The best you could really hope for your child is a local Walmart job.  Times have changed.  There are several innovative programs available to help re-train the autistic brain.  Applied Behavorial Analysis(ABA) is one such approach.  ABA breaks down the item to be learned into small incremental steps and builds up until complex tasks are learned.  The program relies on positive reinforcement.  The program must be precisely tailored to the child and intensive(>33 hours per week).  As more and more skills are learned, the kids eventually begin to learn on their own like normal children.  A small number of children have done so well with ABA that eventually they became indistinguishable from their typical peers and are considered to be “recovered”.  There are several other behavioral treatments to autism such as Greenspan’s Floortime, RDI, etc.  Due to their intensive nature and need for highly educated professionals, these treatments run >$25,000 per year in cost.

The behavioral approaches to autism are very effective but one can argue that rebuilding the house while the fire is still burning is not the best solution.  Something went terribly awry in children with Autism.  The cause of Autism is very much unknown and filled with great controversy.  Is it vaccinations?  Why do seemingly normal kids suddenly regress into autism?  Why is there a sudden epidemic in cases?  Children with autism exhibit differences in their bio-chemical makeup.  Recently, several prominent scientists and practitioners have put forth bio-medical treatment options based upon good science.  As some of the underlying physical problems are addressed in autism, the kids begin to improve and the behavioral therapies become much more effective.  Some of these therapies include:  chelation, special diets, intravenous immunogloblins, methylation corrections, antivirals and many more.  The Autism Research Institute has documented a few thousand recoveries from autism over the past 5 years due to biomedical treatments.

Andrew has made incredible progress over the past 5 years but still has much further to go.  We have not hit the autism lottery and found the silver bullet to his recovery.  Instead, the “all of the above” approach has slowly but surely improved the situation for him.  He has endured 5 years of ABA therapy.  He has four very loving therapists.  A casein, gluten, soy and peanut free diet has been in place for 4.5 years with immediate and substantial results.  More advanced therapies such as Chelation, IVIG, etc have occurred over the past 36 months.  The best odds for recovery occur before the age of eight and this fact is making me very uneasy as Andrew is just now 7.  He still has a bit to go.

From an angry head banging child of 2-1/2 years to a fun loving but quirky seven year old, the progress has been incredible…………….

David Atkinson is the father of two boys, age 7 and 9 - one with autism, one without.  Atkinson is the head of a business unit within a global manufacturing company.  David and his wife reside in the state of Michigan and are active in the greater autism community.

Comments

Kathy Blanco

Your child is truly beautiful. All of our kids are. I was preparing a christmas gift for my inlaws, one of those frames that digitally display your photos...and it came upon me so hard...my kids are so pretty, I mean, dashing, model like. I took my digital camera over our old photos and even took photos of photos, since most of my kids were born before the digital age. It came upon me again, gosh, they are so beautiful, their eyes, their faces, their twinkle...and their spirits.

That said, I know autism back in my day (diagnosis son was 1983), was almost a term you have never heard of. I remember sitting at the desk with the panel of deemed experts, and thinking...why God? Why me?

Then, after a couple of kids, much stress, and barely a diagnosis here or there, I had my last child. Bryna Siegal at Stanford was seeing my son and we were organizing probably the first ABA therapy known back then, almost LOVAAS. I had my daughter on my knee when we were talking about my son. Then, I get the report, and she said the words "please be mindful, I see signs of autism in your daughter"...I almost died...I called her with a "how dare you" mentality, thinking, you can't diagnose autism that young (six months). She said she has seen signs such as large jowels (that is that cute baby fat underneath the chin line), and she mentioned hand flapping (unbeknowst sign back then), and inability to come back on tummy afte being on back on floor.

And because of that bold stance, we went forward, and put her straitway, and my son into early invervention. I think it was a bit too late for my son, but it got my daughter today to a more high functioning, very wordy conversationalist autistic.

I know it is important to see first signs of autism, and now, I hear my grandchildren on the other side of the phone. The other day, my little new grandson, unvaccinated, was squeeling in the background. I asked my daughter, what was that? She said, he is just being happy??? So, I the asked, how much does he do that? And she said, ALL DAY. OH CRAP! I think I have to tell her very very very politely, just keep a close eye, take him into a developmental pediatirician, keep track...oh CRAP, OH CRAP! So, unvaccinated, but mother was? Does this last for generations? Is it the lyme? I am just praying....

Thomas

What a moving personal account. Keep up the fight!

Tom, Nutritionist

jen

what a handsome young guy!!! Best of luck with more and more success.

Gatogorra

What a glowing, handsome boy. Deep down, he's clearly all there, thanks to his parents sacrifices and efforts.

Thank you for sharing this. These stories keep us going. If it's true that if you save one life, you change the world, then all the parents together who've changed their lives to save their kids means that the world-- ready or not-- is due for some alterations.

Kecia

Great article, David!
Whatever you do never ever give up hope! We didn't find biomedical treatment for my son until he was 7 years old. He's now almost 11 and well on his way to recovery.
Your Andrew is a cutie. :o)

Lin

I absolutley loved reading this, your personal account. It most certainly will offer much hope to so many others. Thank you for sharing and for caring!

Sam's mom

Holly Austin

Thank you David. This is very nicely written and perfect timing for me to share with a family with a newly diagnosed child (they found out on Wed). I feel the same about the progress. My son is almost 6 and has a long way to go....but has come a very long way as well. Thanks for adding more hope during the holidays. We must all remember those of our children that have not been as fortunate and whom have lost their battles and the families devastated by the loss of their angels. We all should be very thankful we have our children and can continue to fight for them. Thank you again....this was a great article to start my day!

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