An Autism Diagnosis

Let me set the stage into our life with our youngest child.  Caleb, the sweetest of boys and the most challenging as a toddler, is 8.  I once referred to him as a toddler in a boy’s body.  Why you might ask?  Because he has Autism. 

For our family Autism was having an infant for 18-20 months, a toddler for 3 plus years and then a young preschooler.  My house had to be baby proofed for his invasion modes, filled with pull-ups and potty training tools for over 5 years, sensory tools and swings littered our house for when he would (and still does) get overwhelmed, and of course a calm and gentle ear for his language ability or lack there of.  I don’t have it all figured out, but I have discovered a few things on this journey.

Our diagnosis was not easily obtained.  We spent years of professionals telling us he had low muscle tone in his lip and a speech delay.  I knew in my mommy gut that it was something more.  (Here is where I learned to listen to that voice that talks to me about my kids).  

When he was four and a half years old, we moved back to the US from overseas.  We saw our new pediatrician who took one look at our boy and referred us to several therapists for evaluation.  We saw a physical therapist first.  She moved us up the wait list to the front of the line for Speech and Occupational therapy after our first visit with her.  These therapists helped us tremendously.  They had us try listening therapy, compression clothing and many other tools at home.

We were referred to a neurologist shortly after starting all of these therapies.  Our first visit consisted of us telling the PA all about Caleb.  She told us she was diagnosing him with a global developmental delay.  Which basically means he is delayed in most areas of his development. 

Six months later we returned for a follow up to the same PA who told us that maybe he had speech apraxia.   With this idea in mind, we returned to our hometown and spoke with the speech therapist who disagreed with this diagnosis.  Now mind you his therapist had been working with him weekly for half a year.  The PA had met him twice for 30 minutes mostly talking with us not him. 

After a year, we again returned to the neurology department at the children’s hospital and again we saw the same PA.  We asked her specifically about Autism.  (It had been brought up several times in discussions with teachers and therapist).  We asked her if it was possible we could be dealing with this.  She told us she didn’t see it.  With a little more discussion she offered to go through the checklist of an Autism diagnosis with us. (We felt like she was just humoring us with the idea to show us she was right)  At the end of the questionnaire she told us “Hmmm, I guess I have to give him an Autism diagnosis!”

WHAT????  We left there with a world changing diagnosis and an avenue to get some real help, but we also felt like we had to ask for it.  We did not want this diagnosis and we did not ask for it.  As a parent this was not a great emotional state.  So, again we went home. 

As I was doing research on all that we had learned, I found out that the University of Washington has an Autism center!  They perform a formal interview with testing and evaluations.  We had to pay up front what felt like a lot of money at the time, but with the knowledge that our insurance would pick up most of it (and we could get reimbursed the additional funds), we jumped at the chance to find out if his initial diagnosis was true. 

Here we go again off to another out of town doctor.  We wanted answers.  Hopefully, these answers could help us as parents.  Any answers that could help our little boy who was living in his own world, hiding from people, often out of control, and very hard to communicate with was worth it.

After a 2-hour appointment with just us, and tons of evaluations from teachers and other medical professionals in hand, we began our journey with a second opinion.  The doctor at the Autism center spent two separate days (2-hour appointments each) evaluating Caleb.  A speech therapist watched through a window, while the Autism specialized doctor conducted play and communication evaluations.  These sessions were recorded for viewing and referring back to later. 

Finally several weeks later, we returned to the Autism center to discuss what they had seen and learn.  They diagnosed him with Autism and ADHD.  He has the classic monotone sound in his speech but not all of the time.  He makes good eye contact, but not as good as a typical child.  He has singular interests.  He does not respond to his name.  The list went on.  She explained to us that if she hadn’t taken the time to work with him so intensely she could have missed so many signs because he is very high functioning.  He has had learned to adapt and respond the way he thought he should or they way he needed to get his needs met.

Wow. Finally!   It was a long time coming, but at the age of 5 we finally had some answers.  We still do not know we he is Autistic, but he is.  The best part was that they sent us out the door with a letter for anyone who might need the diagnosis for therapies and school.  They also sent us with a list of ways to help him at home, AND a list for his teacher at school with modifications specific to him.  It was such a relief to know what we were dealing with and how to help him cope with the world around him. 

It was HUGE!  And it was just the beginning in so many ways.  Now we knew the name of what we were dealing with, and a little of the how, but to truly know what our future would be like was anyone’s guess.