Ben Age Two: The Autism Diagnosis

I've heard of a lot of children that are clearly on the ASD who have parents that are in denial. I didn't want to be that kind of parent, and as much as I knew deep in my heart that something wasn't right with Ben (it was very clear he was delayed) I also believed deep in my soul that he wasn't Autistic. Ben didn't have the major signs / red flags. I'd read through tons of lists over and over again over the past couple years and he just didn't fit the bill. Ben never toe walked, flapped arms, lined up toys, spun in circles, rocked in place, made echo sounds, repeated phrases over and over again, avoided eye contact, preferred to play alone, rejected physical attention, played with toys inappropriately, spun wheels, had obsessive behaviors, ritualistic patterns, wasn't a picky eater, etc etc etc. But he was "all boy" and very hyper, did act like a "crazy animal" in stores, and didn't speak and had poor comprehension. Once he started loosing the little bit of language he had, I had to start accepting that maybe he might be slightly affected by Autism or is on the very lightly affected side of the spectrum. High functioning they call it right? Only if he was regressing I feared he might be severely affectied in time. Once we changed his diet and cleaned up his environment we started seeing improvements with speech and his comprehension was now soaring.

During Ben's Early Steps Evaluation they measured his comprehension as more delayed then his speech. By the time we met with the Neurologist (3 months later) at the famous football team clinic (trying to remain as discreet as I can without being sued), I was sure that if the Early Steps team hadn't diagnosed Ben as Autistic, then there was no way that he would be diagnosed Autistic now that he can say a few animal sounds and responds to his name. I filled out some paperwork on the history of Ben and why our pediatrician referred us and wrote special notes besides the areas I checked off to explain how Ben had a history of throwing up / vomiting but stopped since we changed his diet. How once we changed his diet we began to see improvements with speech and comprehension.

As we filled out paperwork at the clinic for Autistic children in south Florida I couldn't help but take notice of the other children in the room and compare them with Ben. I watched a mother stroke her what looked like a 14 year old's back. His eyes were glazed over and he looked peacefully content resting against his mom. I wondered if that would be Ben one day. I wondered if the boy with the peach fuzz mustach still wore diapers. As we made our way into the hallway with little rooms, I couldn't stop watching this 11 year old girl spinning in circles on tippie toes, sucking on her hair occasionally. The funny noises this 7 or 8 year old boy kept making caught my attention next. His mother was trying desperately to keep him calm. I could relate all too well. He was loosing it and I felt tempted to tell her to take our spot if it meant she could get him seen sooner. I watched her more than I did him, empathy filling my heart. She looked so tired and stressed as she failed to find anything to keep her son quiet and entertained.
We entered our room and the highly respected, best in the field, neurologist entered the room a few minutes later and quickly looked over both Ben and his baby brother Jonathan. He asked the names of both boys and their ages and asked me when did I know that Jonathan was different then Ben. I told him they were different from birth. Jonathan wasn't colicky. They are night and day. The next statement he made will forever cause my heart to doubt what I know in my soul: "Then I don't have to tell you what you already know. Your son is Autistic," he said. "Actually, I don't know that for sure, which is why we've come to see you," I told him. In my head, I was thinking about how Dr. Udell said Ben was borderline. He was "on the fence" and I liked that. I liked the idea that Ben might have been heading down the path that leads to Autism but our intervention will keep him from regressing into a full blown child on the ASD.

I looked back over at Ben while this Neurologist went over his opinions on Autism being caused by genetics and how there are over hundreds of genes that "may" cause it and how my husband and I should both be tested in case either of us have one of these genes and therefore can determine whether or not we want to have more children. While he chatted away, I looked over my shoulder and watched Ben as he sat on Nick's lap reading a book, pointing to the dog and saying "dog. woof woof" and turning the page. I thought for sure an Autistic child couldn't do that...and how does reading a book on dad's lap make him Autistic in this doctors eyes? I heard the boy from the hallway moaning and yelping and making odd sounds - not so unlike the animal like crazy sounds Ben often makes when he's bored and in a shopping cart. But he wasn't acting that way now, he was acting "normal."

I asked this doctor what he thought about diet and how it affected Autism and gut health. He told me that children with ASD have gut problems because they are Autistic, and trying to fix their gut wont fix autism. So if a child throws up all the time it's because they are Autistic? The Autism makes them vomit? I asked him what his thoughts were on Ben's vomiting stopping after we removed wheat and dairy. He brushed it aside as if it were mere coincidence and said, "Maybe he has an allergy to milk." He went on to say how these diets haven't been proven to help and how "Autism Specialists" who claim they do help are dangerous because they prey on parents and give them false hope. I tried to tell him about some of the lab tests we had done on Ben's blood, stool and urine, and before I could go over those results he said that these kinds of tests are "bogus." I didn't want to get into an argument with him so I moved along to vaccines. I asked him if he thought children could be damaged by vaccines. I had recently done some research over at Educate Before You Vaccinate http://educateb4uvaccinate.multiply.com/ and even called Merck to find out exactly what's inside vaccines and what levels of metals are in them. I watched videos and read stories after stories of children who lost developmental milestones or even had seizures after being vaccinated. Even the FDA had to announce that the flu vaccine caused over 55 seizures last year in children under age 2. I read about how some children even died within hours after being vaccinated. Dr. Udell knows a mother who is a radiologist and witnessed a child who couldn't be resuscitated and the parents were crying, "She was vaccinated today" and the pediatrician who couldn't save the boy happened to be the pediatrician of the radiologist's son too. Her son is Autistic and she had asked him about vaccines in the past. He looked her right in the eye and ordered, "Don't say a word!" That was when she decided to seek out a DAN! doctor and found Dr. Udell. At any rate, I knew all this, so I was shocked when this Neurologist closed his eyes, shook his head like a stubborn child, and said, "It doesn't happen." "What do you mean?" I asked. "It just doesn't happen," he repeated. "So everyone who claims it does happen is lying?" I asked. "What's the point?" I pushed on. "Money," he answered. And that didn't make sense to me because although some of the parents who claim their child was damaged by vaccines sue the government or vaccine companies, most parents don't get money for posting a you-tube video or writing about their opinions on a blog. In fact, I think the vaccine manufacturers make a LOT more money promoting these vaccines and trying to silent those who speak against them, then the amount of money some parents might receive for compensation.

I realized pretty quickly that this doctor wasn't on the same page as we were and wasn't open or interested in hearing about the interventions we are making to help Ben and his improvement because of these changes. Before we left I asked him, "Dr. ________ I don't mean to disrespect or undermine your expertise here, but how do you know my son is Autistic?" He answered, "Look at how Jonathan is aware that I'm in the room. Ben doesn't even care that I'm here." I thought that was a pretty lame answer so I asked him if he was like 50% sure Ben was Autistic or was it 95%? Afterall he didn't perform any kind of test, didn't talk to Ben, didn't ask him a single question, never even called his name to see if he'd look up. Nothing. He answered, "I'm 100% sure. I've been doing this for over 20 years and I'm not trying to take away hope by giving him this diagnosis. I could be wrong. You could come back in 6 months and he could be typical, but that never happens." Tears began to flood my vision and I asked him if Ben would have to live with us forever. I wanted to know how severe was he on the spectrum. On a scale of 1-10 is he a 2 or a 7? Is he PDD, ADD, ADHD, Aspergers, aren't there different kinds of Autism diagnoses? He explained that all the different labels for ASD will no longer be used and every single delay will now be called Autism. He went on to say, "Use this diagnosis to get him help. Don't use the label to hurt him, use it to get him the services that will help him. I have hope for him, but I don't have a crystal ball. I don't know what the future holds. " He then handed us information for an orientation over at Florida Atlantic University for CARD.

As soon as we got in the car my husband and I both cried again...not sobbing, just soft tears because this was the first time we were delt such a clear cut diagnosis. "Maybe it's good to just call it Autism and stop worrying over whether or not he has it" my husband whispered. I looked back again at Ben and saw so much progress from that trip home from Whole Foods 3 months prior. He sat there smiling at me. He started babbling some gibberish I couldn't understand and then said, "eat" followed by "nore" while he did the sign language gesture for "more" and I handed him and baby brother some rice crackers to eat. "We just have to be thankful that Ben is doing as good as he is," my husband continued, "and think about how far he's already come." I agreed. "Ben is what he is, and I'm thankful we are his parents," I told him. I watched other parents dragging or carrying their children to and from that clinic and wanted to hand each of them a business card to see Dr. Udell. How sad that all of these families are told that whatever problem their child has is just part of Autism. To just accept it. Well we no longer just accept anything. We research everything and trust our gut instincts too.