Our Son’s Journey to an Autism Diagnosis

Autism Diagnosis

In the last week I have had two separate conversations about our son Jacob’s Autism diagnosis. I have decided to share our journey in hopes it helps other parents who are currently undergoing the same voyage. You are not alone, and you will come out of this storm a better parent and person, I promise.

My son Jacob was first flagged at three years old. His preschool sent home a note that they wanted to meet with us. I assumed, naively, that it was because he was so advanced. He had an amazing vocabulary and imagination so naturally the only reason his preschool wanted to meet was to discuss how intelligent he was.

I was wrong, oh how I was wrong.

I left the meeting in tears, having witnessed my child barrel roll all over the floor, walk through other kids projects with no awareness he was doing anything wrong, and in general be the outlier in a group of twenty three year olds. I knew that day that my child was different. It’s a horrible feeling knowing your kid is different from the other kids. It is not a feeling I wish on anyone. Growing up I always tried to be part of the group, never wanting to be different, and here I was the parent of a ‘spirited’ and ‘unique’ child.

My husband and I (really just me, he went along with it) thought a more structured preschool environment would be better for Jacob. We switched him the following year from a play based preschool to a very regimented catholic school. WHAT A FUCKING DISASTER. We made it through preschool and one month of kindergarten. His teacher sent home post-it notes daily berating our child. We had meetings after meetings with the principal and teacher. The catholic school even excused him from weekly mass because it was the teacher’s “longest hour of her life”. I was confused, did he streak the alter? Did he moon the priest? No he just wouldn’t sit still, like most kindergartners. He got in trouble for singing the hymns in line, and for refusing to sit at his table. I suggested he be permitted to do his work on the floor, but that was a no-no, ALL the kids had to work exactly alike…like little kindergarten robots. Then the teacher sent home a note asking if he knew how annoying he was because of the sounds he was making. I was done. I knew this school was not going to be a long term solution for him.

Along the way we started Jacob on meds for ADHD and anxiously awaited for some of his behaviors to subside. Instead he had horrible side effects from the stimulants and began eating his shirt collars out of anxiety. We pulled him off the meds and tried to find other ways to handle his differences. The principal called me at home on a Friday to ask me point blank why we had stopped the medications and suggested that him eating his clothes was really not that bad of a thing as long as he was sitting still. Something had to go and when I found my child hysterical crying one school morning in our laundry room I decided it was us. He never returned to that school again. (He now attends a Montessori school and is doing well, it is the perfect environment for him and I wish every family had this option available to them.)

We continued working with his doctor to identify what was going on with our son. He had aversions to certain foods, textures bothered him. We purchased a weighted blanket and he slept for the first time past 5 am. We started vision therapy in hopes that he just needed some help with eye training (it has been shown to help ADHD kids) and he would be all better. He wasn’t. He did occupational therapy to help with low muscle tone, as well as fine and gross motor skills. We hired a personal trainer to build up his stamina, abdominal muscles, and gross motor skills but nothing seemed to be the panacea.

Everything got us an inch worth of success in a marathon long race.

Medications were changed repeatedly, tests were run to rule out genetic problems, there was something there but what. The word autism was floated repeatedly, but he wasn’t a typical autistic kid even though he never babbled or pointed as an infant and had delayed language development. He didn’t stim or line up his toys, he didn’t flap his arms, or rock. What he did have was a lack of eye contact, poor social skills, an intense focus on specific topics, poor muscle tone, fine and gross motor delays, and sensory issues. He met the criteria for Aspergers Syndrome and was diagnosed when he was in second grade.

BUT the book that dictates all psychological ailments, the DSM IV, was being updated and there would be no more Aspergers diagnosis, only Autism spectrum would exist in the DSM V. Did Jacob meet the criteria for Autism? We waited until he was 10 and a half to test him. We wanted to make sure he could answer the questions adequately, and would be able to handle a three hour test with a specialist. We didn’t want to test him on the Autism test for eight and under, but with the older kids test that requires samples of work and an extended interview.

The day we received the results we already knew the answer. The soothing color blocked walls enveloped me as I heard her definitively say that our son fell on the Autism spectrum, but high functioning. My heart skipped a beat and my stomach clenched. Hearing those words out loud after so many years of searching for some reason caught me off guard even though it shouldn’t have. The word Autism bounced around my head as I glanced at my husband stoically sitting alongside me.

“What will this mean?” I asked.

“Nothing. Jacob will continue to be who you know him to be, he will continue to grow and blossom, but now he can receive services from the community and the school system. This diagnosis will not change who he is, it is just a tool in the box of raising him.” The psychologist responded, and she was right.

We left our appointment shell shocked, but with an answer that took seven years to get. After a few days we told Jacob.

“Jake, know how we met with Dr. Karwright the other day?” we asked as we sat in our living room, Jacob perched on our leather couch.

“Yes.” He responded, showing little interest in the conversation.

“Well, remember all those questions and tests you did with her?” I said with a leading tone hoping he asked a question that would make divulging the information easier. He didn’t, he just looked at us before mumbling, “Yup.”

“We learned you have Autism.” We explained in a matter of fact manner to him, knowing he doesn’t take long explanations well.

“Oh. Ok.” He responded, pushing himself off the couch signaling the conversation was over.

My husband and I looked at each other, assuming there would be more questions but there weren’t. We went on to explain to Jake how much we love him, and how this diagnosis doesn’t change who he is, and that we will always be here for him.

“Can I go back to my room and play now?” He asked after we finished talking.

“Sure buddy,” I said glancing at my husband who sat in the recliner chair, our eyes locking across the room as he shrugged. I expected more from our announcement but should have known that Jacob would need to process the words before he spoke. Our son has gone on to ask us if “Autism has a cure?”, “why do I have it and not Jillian (his sister)?”, “does anyone else in our family have it?”, and other questions that make me catch my breath when they fall from absolutely no where into our laps. I answer all his questions honestly and promise him we will continue to look for therapies and solutions for his needs.

Having a child with Autism brings many moments of heartache, sadness, and frustration; but it also brings a new perspective to life that I would never have had without him. My son has opened up my eyes and world to new and amazing things. I just hope this world is ready for him because he has a lot to offer it.

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  1. Barbara says:

    I read an awesome book this summer called Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. There is some ugly history but some incredible hope for people with high functioning autism today and in the future. Really we NEED these people who think differently then everyone else and often because of very specific interests make tremendous contributions to society. Society needs to change not our beloved children. So I’m working on society one person at a time. Thanks, Alyson, for sharing your journey. And by the way, even though Jacob was never in my class I’ve developed a fondness for your gentle and courteous son.