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In Their Own Words – Our Path to Diagnosis

This post is by Jennifer, a stay at home mom with two children.  In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year.  Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created  to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone.  Support – Compassion – Awareness.
 

 
It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.

My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.
 
We didn’t want to wait, so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn’t a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.
 
A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That’s when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I’m not big on comparing but it couldn’t be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn’t want my friend to come over anymore because of how upset I would get.
 
Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true.
 
When we were alone he was fine.  We were fine.  It didn’t matter that he couldn’t talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias.
 
Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out.  It puts her in a bad spot.

At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, “No.  He doesn’t have autism.  If he did, he wouldn’t have looked at me.”  OK.  Again, confirmation bias.  A doctor confirmed it, he didn’t have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.
 
After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No ‘autism’ word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call.
 
So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn’t have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services.  Didn’t know that did you?
 
I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.
 
Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others.
 
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.