The Long Road to Autism Diagnosis (and all the signs that were slapping me in the face along the way)

In Hampton, Virginia on June 25, 2006 at 1:09 am EST, a ten pound, healthy baby boy named Olin made his debut on this Earth… and I was a very nervous new mommy.  He continued to grow and grow, and thrive on breast milk.  I returned to work after three months and Olin had a very easy time transitioning from being home with me to being with a babysitter, and I thanked my lucky stars for that!!!!  I always said, “Olin is horrible birth control!  He is the easiest baby ever!!”  He continued to develop, and started sitting up unassisted around 6 months, and he used to make the sweetest cooing noises at me… and Olin had this *squeeeeeeeeal* of a laugh that could melt anyone’s heart.

 
 

When Olin was around nine months old, he got his first (excruciatingly painful) ear infection, that seemed to last FOREVER… it took two rounds of antibiotics and one round of steroidal drops to finally rid Olin’s ears of that nasty infection.  He wasn’t crawling yet; wasn’t saying “hi,” “bye,” “mama,” or “dada,” but the doctors didn’t seem to mind, and I didn’t think anything of it either.  At around ten months, Olin had his first hearing test because I complained to the doctor that Olin wasn’t responding to his name, and I feared that his ear infection did some damage to his hearing.  He continued to have six ear infections over the course of twelve months, which just fueled my fear for his hearing.  My focus was Olin’s hearing, so I made sure he had every hearing test that existed to rule out any hearing loss.  He had a rudimentary audiology exam ten months, and they confirmed at that point that he did not have fluid in his ears, so there was no need for tubes (phew… sigh of relief for the nervous mommy).  Me and Olin packed up our bags and moved back home to Southern California without fear of his eardrums bursting in flight (I said I was a nervous mommy).  It was also around this time that I first observed how Olin seemed to realize when printed products (books, magazines, etc.) were upside-down, and he would always turn them the right way.  I would put upside-down books in front of him all the time and show people how he would pick it up and turn it the correct way.  Olin also started crawling like a little speedster, and my worries for his gross motor skills slightly diminished.

The next Well Baby Check-up was when Olin was around 12 months old, and, as I said, we were now in California.  At home, I noticed that Olin became obsessed with shoes, but not just any shoes; only ones with laces.  I didn’t realize the extent of his obsession, until we were sitting in the extremely crowded waiting room at Pediatric Partners, and Olin crawled around and untied every shoe lace he could find.  I laughed and chased him around the waiting room until we were finally called back.  Dr. Winter told me Olin was in the 90th percentile for height and weight, and that was no new news to me.  The doctor noticed that Olin was sitting in my lap and asked me if he was walking unassisted yet.  I shook my head “no,” but said he walks holding onto furniture, but just won’t let go.  Not a huge concern still at that age, but I was told to make sure he was walking by 18 months.  Then the usual questions of developing language were asked… and those were easy to answer: At this point, Olin was still making his cute cooing noises, but even those were seldom anymore.  In 2007, there still wasn’t much written or discussed about Autism, and it wasn’t even something that crossed my mind still… but here is a little checklist that is now highly recognizable:

If by twelve (12) months of age, your child:

Ø      Is unresponsive to his/her name

Ø      Has little to no verbal development

Ø      Makes little to no eye contact

Ø      Displays obsessive behaviors

*if any or all of the above statements are true, you should discuss concerns with your doctor and insist on a screening for autism or any other developmental disorders, and you should contact your regional center immediately to see what kind of services your child may qualify for.

I, however, was an autism dummy.  The word wasn’t even in my vocabulary, and still wasn’t uttered aloud by anyone around me.  I just figured my son was... quirky?!  Olin's behavior enthralled me for hours on end, but I thought all kids did these kinds of things (I had no other child as comparison, give me a break).  Olin used to twirl in circles on the floor for hours on end.

Then when Olin was 15 ½ months old, he finally started walking on his own… VICTORY!!!!  Olin still had no spoken language, and still didn’t respond to his name.  If eye contact was successfully established, it was fleeting.  He didn’t point or gesture to desired objects… he was just… there.  I was still so concerned about his hearing, so we scheduled a B.A.E.R. test which had to be administered in San Diego at the Children’s Hospital, and was a ten week wait.  At 18 months, Olin had his B.A.E.R. hearing test.  They don’t give you the results immediately, so we had to make our follow-up appointment with our regular pediatrician for the results.  As we sat in the waiting room, Olin scurried out of his chair and crawled all over the floor untying every person in the room’s shoe laces, and I tried to laugh it off that he was just a little rambunctious, and still obsessed with laces.  We were finally called back, and I was told that his hearing was perfect… but no sigh of relief this time (don’t get me wrong… it’s not that I wanted my son to have a hearing impairment… but at least it was some kind of explanation for me).  I was still in the dark as to why my doe-eyed, curly-haired little boy wouldn’t look at me, or give me hugs and kisses, and seemed to not hear or understand the meaning of the word ”no.”  I was lost. 

A month later, Olin’s obsession with shoe laces and various other objects that “tie” or “dangle” in any way, shape, or form continued to grow.  He loved spinning the wheels of cars, but covered his ears at the loud noises many toys cars made.  My mom told me that I should try and get more evaluations for Olin, because, let’s face it, at this point it was obvious that there were significant developmental delays, but I hadn’t the faintest idea where to start!  There’s no handbook for this.  Every parenting book teaches you step-by-step, year-by-year of typically developing children, but there was nothing to prepare me for developmental delays and the steps you should take if you notice any.  I started with the doctor, and he gave me a piece of paper with information for the Inland Regional Center.  I put it aside and didn’t give it much thought… this paper told me nothing.  My mom continued to hound me (thanks mom) about making phone calls and making appointments.  She could see my frustration building, and asked if I would like her to just make the phone calls for me.  So I gave her every piece of paper I had, and she went to work. 

In March 2007, three months before Olin’s third birthday, we finally had an appointment with IRC… and the appointment was three months away!  Three (very quiet) months went by, and Olin’s very first Case Worker knocked on the door.  After a few hours of questions and observation, she agreed that there were significant delays, and said Olin’s infant education services would start soon.  She explained that someone would come to our home twice a week to do educational drills with Olin, and help develop skills that were clearly behind.  She also said that the next step would be making an appointment with the child psychologist, and she said she would call me as soon as she found out the next available appointment.  Child Psychologist?  Whaaaa????  I asked the following question: “What is the Child Psychologist for?  My son doesn’t even talk,” (I’m shaking my head as I type).  She nonchalantly responded that a Child Psychologist is the one who must diagnose Autism.  There it was.  The first time the word was uttered: Autism.  I brushed it off and figured it was just a formality, because my happy, huggable, timid toddler didn’t “seem” autistic to me (again, shaking my head).

January 9, 2008 seemed to take forever to arrive.  Me and Olin, with my mom in tow, trekked up to the Inland Regional Center and met with the Child Psychologist.  She handed me some papers that asked somewhere in the range of a million questions (I lost count).  While I was filling out the questions, she decided to observe Olin in the waiting room around the other children.  I tried to focus only on the questions I was supposed to be answering, but I couldn’t help watch as my son walked around this waiting room filled with children, and didn’t engage one kid.  You would have thought that he was alone in a room.  He looked around as if nothing else existed (a quality I now admire).  I finished the questionnaire(s) and we headed into her office.  It was then that I realized she was wearing a cardigan that could be tied at the waist, and she had it untied and dangling… CRAP.  I knew Olin wasn’t going to focus on anything else.  At this time, I still considered this whole diagnosis as some kind of “test” and I thought that if the environment was perfect, that he would “pass” this test, and not be considered autistic, or at least be considered only mildly autistic, or high-functioning, because everything I seemed to read about talked about “high-functioning” and “mild autism” but I was so wrong.  She tried to get Olin to play with various toys, and Olin showed no interest.  When she brought out a toy that Olin had trouble figuring out, his solution was to pick it up and bring it to me.  I told her he does that all the time (I thought that was a perfectly appropriate way for a 2 ½ year old to ask for help… again… shaking my head).  She tried to get Olin to put pegs in a peg board, no dice.  I sat there the whole time silently pleading for Olin to just do one of the things she was trying to get him to do.  When she said she had enough data to make a diagnosis, we sat on the couch and waited for her to gather up all of her papers.  She pulled out this one piece of paper, and unfolded it to reveal a huge scale.  That was the first time I ever saw an Autism Spectrum Disorder scale.  I saw the end that was labeled “mild” and realized it took up almost the whole scale, followed by “moderate” with a decent sized chunk, and “severe” with just a few inches on the end.  She took out a pencil and began to explain the scale, then she dragged her pencil along the scale to indicate where Olin was on the Autism Spectrum.  With my eyes focused on “mild” her pencil darted over the beginning of “severe” and I think my heart skipped a beat.  

In all of my euphoric dreams of the future, I never had prepared myself for having a severely autistic child, and I wouldn’t change him for the world.  Olin and autism have taught me so much about life, love, and humanity.  I look back now and, of course, I can see all of the signs that were slapping me in the face: no spoken language, stimming/obsessive behaviors, little to no eye contact, and the unresponsiveness to his name (though the latter two have improved leaps and bounds over the past several years).  I have since learned to live without fear and worry, because all things will work themselves out, everything happens for a reason, and life goes on…

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