My Family's Journey With Autism - part 4

Part 1  Part 2 Part 3

In April of 2010 we traveled to Atlanta to the Developmental Pediatrician, my son had turned 4 a few months before.  Apparently Dev.Peds are in high demand and they come few and far between.  We arrived at the children's hospital and I envisioned it would be much like my first visit, when we visited one in Missouri, a large room with lots of toys and a doctor that spent lots of time getting to know my son by interacting with him.  I couldn't have been more wrong.


We arrived and the waiting room was packed with family's of all ages.  There was a tiny room with toys and the rest was just a typical doctor's office type room.  This is were we sat for 2  hours waiting to even be seen!  I had no idea it would take this long  and I did not prepare for this at all.  By the time we got called back we were sent to a regular type waiting room.  Nothing  for kids to play with, no TV, only things kids could not touch and here we sat for 2 more hours, before the doctor graced us with his presence.

During this 2 hour time period, we were visited by a speech therapist, physical therapist and occupational therapist.  They came in and explained what their job was and what kind of services they offered, (which I already knew, by the way).  They did not spend any time with my son.  Then the doctor's nurse practitioner came in and questioned us.  She again did not spend more then 5 min interacting with my son, she sat there and took notes while my husband and I talked and took turns pulling my son off of the medical equipment.

4 hours after our scheduled appointment time, the doctor finally came in.  He was a smug man from South Africa and after some brief intros sat down and pulled out aball.  My son at this point was climbing  the walls, he was tired and hungry and this was the only toy he had seen in the past 2 hours.  My son took the ball started running in circles and saying "Ball- B-A-L-L, Ball."  (which the doctor pointed out as repetitive behavior, very common in autism)   Then the doctor said, "so do you think your son has autism?"  My husband and I looked at each other and I said, "uh we don't know, that's why we are here."

So the doctor then told us the characteristics they look for in diagnosing autism spectrum disorders.  
Then  he asked us again, "do you think your son has Autism?"  This is where I was unsure, yes he does meet some of the criteria, mostly in regards to social interactions and communication skills, but for me a big part of the Autism Spectrum that I have seen parents struggle with are the child's inability to function in regards to set schedules and routines causing tantrums if not followed.   And children with an intense focus with certain topics and subjects.  While our son likes to know what's coming up and remembers what day we do what, he can easily be persuaded to follow a new schedule and we have yet to see any unusual obsessions with topic matters or objects. 

So he looked at us, after spending less then 5 mintues even interacting with my son and said.

"You have a very special unique boy and I think he has Pervasive Developmental Disorder leaning towards the Asperger's range. "

He wrote a prescription for Speech and Occupational Therapy and told us to do Floortime Therapy and said  to come back in 6 months.  After waiting  for 4 hours, the doctor spent less then 15 min with us.  This was a huge difference then the 2 hours I spent with the Developmental Pediatrician back in Kansas City.

So what did this mean, I later learned PDD is a way of saying your child does meet some criteria for autism spectrum disorders, but  not enough to have a formal diagnosis of Autism, Asperger's or PDD-NOS.  He was leaning towards the Asperger's range, because my son is very bright, which is common in this.   

We went home feeling exhausted and overwhelmed.  I knew my son needed speech and occupational therapy and I finally had a prescription for it, so insurance would start paying for it.  This was such a blessing because we were currently paying out of pocket for this and at well over $100 a session it adds up very quickly.


 However, the insurance company continued to be a pain in my side and refused to pay for therapy because my son was too high functioning.  It was a full time job in itself, dealing with the insurance company and I remember one time losing my temper on the phone yelling at the poor women on the other end.  I told her,

"you think I am making this up that my child needs therapy?  I would much rather be spending money on little league and soccer, but my son can't stayed focused long enough or interact appropriately to be on a team.  I have the diagnosis you wanted, why won't you pay for this!"

I did finally get them to pay for it, after many letters and threatening a lawsuit. 

I became more frustrated as I researched support groups and social groups for my son, only to feel like an outsider in these groups too.  My son was very high functioning and when talking with other parents with the same diagnosis, I didn't feel we fit in here either.  Many of the parents faced children so set in their ways, that enormous tantrums would prevent them from normal day to day activities, such as getting dressed.  I felt bad venting to these people, yet we had real concerns too.  My son, would often leave the house, if he saw something that caught his attention outside.  I ended up putting a stop sign on the front door, so he would stop and remember to ask me if he could go out, it worked too.  He was also so impulsive, he wouldn't think twice about dashing in a parking lot or walking away from us in a crowed place.  It was like those intuitively learned behaviors I didn't necessarily teach my other kids, had to be taught to my son.  Once he was taught them several times he got it, but he definitely had to be taught.  I found these videos by Model Me Kids to be very helpful.

We also found a wonderful facility for our speech and occupational therapy, called Peachstate Pediatric Therapy .   They had the most wonderful facility and staff and really focused on sensory integration therapy that my son needed.  It was like our second home and they also offered camps and social groups. 


Now, none of this, answered why my son was so small.  At the advice of several doctors, we finally went to a Geneticist.  The doctor spent a good amount of time with us and asked alot of questions .  She recommend several tests that she thought could be the answer to our question.  When we got the results, he of course, had a genetic makeup unlike anyone they have ever seen.  He had a partially deleted gene on his 7th chromosome, the closest condition they had linked to this was a heart condition and they sent us to see a pediatric cardiologist.  Thankfully his heart looks fine, but we have to continue to visit the cardiologist every 2 years. 

After the follow up visit 6 months later, when I experienced the same long wait, but this time, I kinda went off on the doctor, he told me he offered services in his private office at the tune of $900 a visit, not covered by insurance and he would be happy to spend more time with me there, at a discounted rate of $750.  Of course we went, because the only other doctor like this in Atlanta, had a 18 month wait and cost $1200 a visit.  (however I ended up making an appointment with him after I learned our doctor was  refereed to as Dr. Autism, because he gave the diagnosis so freely).  Dr. Autism, did spend more time with us (45 min) at the private office visit, but gave us advice, like don't waste your money with special diets and supplements and  "don't put your son in team sports, kids like him don't get the "team" aspect."  Sorry doc, we didn't listen to your advice and did it anyway and read here what happened.

After learning our doctor's nickname and how he gave the diagnosis so freely, do I think he was wrong about my son?  What I think, is the reason autism seems an "epidemic"  is because there are so many kids diagnosed by symptoms that "look" like autism, but are really side effects of digestive problems that are affecting their development.  I feel like many of the therapies offered to my son, once he had an autism diagnosis were extremely beneficial to him.  But I think medical doctors are missing a large piece of the puzzle, when they only look at behavior, not health and digestive problems too. 

However, the  Asperger's diagnosis did lead me to read more and more about diet and nutrition to help behavioral concerns and how many of these kids had digestive problems too.   I found an Environmental Medicine doctor, who had a child with high functioning autism.  This of course was not covered by insurance, but I still had a gut feeling this could be helpful.  We had many tests run, included organic acid panels, metal tests and urine and stool and blood test.  The results showed he needed a variety of supplements to help regulate his neurotransmitters and aid his digestive system.  He also had unusually large amounts of Aluminum (found in vaccinations)  in his system and oxidation problems.    We started various vitamin and mineral supplements, as well as digestive enzymes and herbal supplements.  We couldn't be happier with the results we started to see.

I'll tell you more in part 5

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