Without a Crystal Ball

Our Journey through Chronic Illness

Last week my son and I sat in a waiting room at a clinic as we waiting for test results. I could feel my heart beating outside of my chest, my hands were sweaty, and I couldn’t stop fidgeting. He was impatient, making sounds of an engine, and throwing a dump truck on and off a chair. People around us didn’t seem to notice my agitation, and I hoped they weren’t bothered by a child that only knows two decibels loud and louder. Finally, after waiting about 1/2 hour, we were called back to the room we had just come from. There were 4 chairs, and they were filled with a Mental Health Counselor, a Licensed Psychologist and an administrator observing for the clinic. I could feel my hands sweating, and I was nervous because I just wanted answers. My son was not cooperating. He was clingy, climbing on me and demanding to play. We moved to the room that adjoined the conference room as it had toys for him.

I took my seat next to a slide and bean bag, and my son started fidgeting with toy cars, playdoh and jumping on and off the slide. The Psychologist started first, and I can tell you I was barely listening. I heard him say a few things about his motor skills being at age appropriate, and then he mentioned his language and cognition was on pace with his age. My heart sank because I thought this meant they were going to tell us that nothing was wrong. My legs started to bounce up and down, and I looked at them with a puzzled look. I truly thought that was the end of the conversation. I said, “Ok.” Then the woman paused and looked at me and said, “Oh we have more though. This is just the initial findings of his development.” My mind came back to the room, and I thought to myself, “this is where they are going to tell me.” The male psychologist looked at me and said, “we want you to know we see all the things you have said about regarding your son. We see his inability to do many things without prompting, and it is clear he doesn’t use body gestures in nonverbal communication, and he doesn’t seem to understand body language. This coupled with his hyper and hypo-sensitivity to stimuli and his need for routine and resistance to change is consistent with”. There was a long pause on his end. I stared at him and looked at him with eyes begging to tell me. Finally, he started again, “Your son has Autism Spectrum Disorder.”

Immediately my head fell backward and tears flew down my face. I started crying, and I looked at them and said, “So I’m not crazy? There really are differences? This really is Autism.” I was relieved and yet so puzzled at the same time.  He looked at me and said, “No you are not crazy. He has Autism.” After that I really don’t remember much, it was a blur of charts and papers. There was talk about what to do next, therapy, follow-up calls, and treatment plans. We left the clinic in the haze. I was happy to have answers, but I left with so many questions.

The diagnosis was the build up for 4.5 years of questions about why he struggled so hard to do very basic things. He was delayed in nearly every single area of his development. He sat late, babbled late, crawled late, walked late, and he was non-verbal until he was 3.5 years old. As he entered preschool, he was challenged to talk to children. He would look at other kids, but he would rarely approach them. If they approached him, he would become stiff and have no idea how to respond. The differences in my mind I had been cataloging for quite some time started to add up and it became this avalanche of differences that tumbled over us every single day. I asked opinions of his Occupational Therapists, Physical Therapists, Speech Language Pathologists and all of them were adamant that he was not autistic. “He’s too social,” was always the response they gave me in regards to why they believed he was not autistic. He was a very friendly child. He was interested in people, and did say hi to adults and loved to play with adults. However, he was terrified of children his own age.

This did not seem to satisfy me. I took quizzes online, read everything on Autism Speaks, and dug through blogs about early signs of Autism in children. Over and over everything I read seemed to be my son. He was repetitive and played with the same toys over and over. We had to teach him to play with toys, we had to teach him to inquire about the world, and we had to encourage and prompt him to engage with others. He hated to be touched by anyone other than my husband or myself. He collected diagnosis of Sensory Processing Disorder, Motor Processing Delays, Apraxia of Speech, Oral Dysphagia, and finally oral aversion. He had so many of the very evident flags for autism. Even his developmental pediatrician saw it at age 2, and even he said, “He’s too social though”.

I didn’t stop reading or searching for a reason he continued to struggle in such profound ways compared to other children. I wanted to know why he couldn’t understand hand gestures, wave hi, give knuckles to friends, or blow kisses. When I asked him to look up, I wanted to know why he would turn his entire head up instead of just his eyes. It puzzled me that at night when I said, “Don’t let the bed bugs bite”, he would look at me with fear and say “but where are the bugs?” Everything he did was so literal. It was black and white. He lived in a world where he existed and everyone existed in his world. We never had conversations that were back and forth. He would talk at us about whatever he was interested in, and he rarely asked us questions unless it was a topic that directly affected his schedule or his interest. His teachers noted he had little to no interest in his peers. His Sunday school teacher shared he often stared at children that were crying with absolutely no reaction on his face.

His sensory issues controlled our lives. Noises were too loud, textures for pants hurt him, mushy food made him gag, he hated anything messy touching him, he only ate foods that were orange, and he was constantly seeking ways to crash and fall. We couldn’t go out to venues without having an escape route and a plan for leaving. When we did go places, we often had to leave early. We left more than a few places after too much noise elicited massive meltdowns with tears, screaming and hitting. Soon we stopped making play dates with typical peers because he always became too clingy to us, wouldn’t interact, and would whine and cry if we left him with children. Our lives became very insulated and isolated by what he would and would not tolerate. He started obsessively collecting cars and trucks. People would tell me every boy loves them. I would say, “It’s the only thing he loves”. He showed no interest in any other toys.

In the beginning, he would line them up in long rows on the floor, and then as he got older he would categorize the cars by type and color. He began to read books about trucks and learned about heavy equipment. His entire life was consumed in cars and vehicles. He wouldn’t watch cartoons about anything other than cars or trucks. We once watched the movie Cars 8 times in one weekend. He spun the tires of the wheels of cars obsessively. When he’s nervous or agitated, he still spins the wheels.  Even though he knows how to play with them more appropriately I still find lines of cars and cars sorted by color around the house.

It got to a point where I could no longer ignore all the glaring flags waving in my face. I made an appointment with a neurologist and shared every last concern with her about my child. She was the first doctor that said every single thing he was facing could easily be explained with an Autism Diagnosis. I left with a referral. We were seen over two appointments and several hours. The clinic was amazing and the staff was wonderful. I was so scared that after searching for so long that they were going to tell me it “wasn’t autism”. When I finally got the answer, it felt like a weight of a thousand pounds had lifted off my chest.

We are still in the beginning of the journey of understanding how to help him, but knowing what it finally gives me hope that we can effectively help him. I have a name for all the diagnosis he has collected over the years, and we now have a plan to help him navigate through the world that isn’t necessarily built for his mind. It’s going to take a lot of blood, sweat, and tears, but I know we will find a way through this diagnosis. I still feel very overwhelmed by the magnitude of this disorder, but I am also hopeful because there is so much help for children with Autism. The one thing I’ve learned is no one knows Autism other than a psychologist trained to evaluate and screen for Autism. Therapists and Doctors can only provide you information based on their experience treating others with Autism. The problem with that is if you know one person with Autism, you know one person with Autism. The spectrum is very wide, and each person is affected so differently. Some children will be very friendly and others will not. Some will love to be touched and others will refuse touch of any kind. Some will speak and others will never speak verbally. It’s a wide spectrum, and the only way you will ever know is if you get your child tested.

If you are reading this and wonder if your child is on the spectrum, I encourage you to contact your child’s pediatrician with your concerns. Be very honest about your concerns and press for an evaluation. Advocating for a child is the only way you can get answers. Also being “friendly” or “liking to be touched” doesn’t mean your child isn’t Autistic. It just means they manage the deficits differently. Knowledge is power and early intervention is key for long term success.

For more information on Autism visit Autism Speaks.

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2 thoughts on “How “Being Social” Delayed my Son’s Autism Diagnosis

  1. We’ve had a long journey as well. Our son was evaluated at 3 years old and they concluded that he’s not on the spectrum. But there was always a gnawing feeling that they didn’t get it completely right. But they didn’t want to retest. “If he wasn’t diagnosed then, he won’t be diagnosed now,” they told us. Tough words to hear. Our son is almost 12 now and we’re trying other doctors. Sometimes the journey is harder when you don’t have a diagnosis.

    Liked by 1 person

    1. I hope they can figure it out. I’m so sorry!

      Like

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