Wednesday, January 9, 2013

“Looks Like Autism Spectrum Disorder.”

There we are... sitting in the office of a Pediatric Neurologist waiting for my youngest son to be evaluated for Autism Spectrum Disorder. As we sat there, my little one moaned with discomfort about being in a new place. To distract him, I handed him a magna doodle to use while we waited. A moment later he handed it back to me with the words, “Why did you take me here?”

It’s an appropriate question since I too feel surprised to be headed down this path. Autism has never been on my radar. Besides the bumper stickers I see, the occasional blog post I read or my own personal experience in babysitting a child with autism for 3 years, I never thought my own child may have it.

I can just envision some of my readers saying, “Hello??!! Isn’t is obvious?” I even had one follower, Meg from Raising Bipolar, question this about my oldest son about a year ago because of his sensory issues, but I easily dismissed this since he was very different than the child I babysat. Little did I know that the autism spectrum is very wide. You can have children that can’t speak on one end and on the other end have children who can talk circles around you. I recently read that if you’ve met one child with Autism, you’ve only met one child with Autism. Interesting huh!

In my usual fashion, I went into serious research mode to prepare for this meeting. After years of doing the “diagnosis dance” with my oldest, I didn’t want to waste any time and I wanted to give the neurologist the clearest picture of my youngest son. In doing so, I pulled together all of my notes, even categorizing them by symptoms, making them as easy as possible for the doctor to process. I watched family videos and read through old journals that I wrote about the boys. Then I interviewed 6 family members (most had no knowledge of what my son was being assessed for) and all of his teachers since preschool to have them give me their observations of my youngest son. To my complete surprise here’s some of the feedback I received:

Family Member 1:
When he was 2 years old I thought he was autistic because he didn’t want to play with all the other kids, he was always playing by himself and was content. He seemed too independent for his age. As he got older, I thought he must have Aspergers because he was very smart, but didn’t socialize with other kids when I was babysitting him. He has a strong need for structure and gets very upset when things don’t go right, his reactions are very extreme for the circumstances.

Family Member 2:
When he was 2–3 years old he showed what looked like “autistic” symptoms. At the time, my daughter (3 months older than him) was in a social group to help autistic kids socialize and I noticed that he played like the autistic kids in the group. At the time I checked to see if he would give me eye contact and smile and he did so I was relieved. I noticed that he wasn’t as verbal and gets upset really easily. I also thought it was unusual that he was content playing by himself for hours when he was surrounded by kids who he knew.

Family Member 3:
I remember when he was around 2 years old that he appeared to be on the spectrum and has since thought it for years. I remember from a young age that he wouldn’t look at me when I tried to engage him. He would also repeat things over and over. Today I notice that he doesn’t look at you and doesn’t engage in conversations. He also doesn’t know how to respond socially but will follow if taught how to do it.

Family Member 4:
He seems to get stressed out when around all the kids at family gatherings and seems happiest when he is playing alone. I also thought he always talked in a unique way, like his own accent or language style.

Family Member 5:
We have noticed over the years that he talks “at” us and not to us. He often looks to the left or the right of us when speaking. He has a unique way of speaking, we noticed that he use to put “ya” at the end of words. He also has no filter. He doesn’t have the ability to take his moods out on others. We have also noticed his fixation with electronics. He would rather play with them instead of other kids. We have also noticed his moodiness and food issues.

Family Member 6:
I’ve always had a hard time connecting with him and getting his attention. He doesn’t seem to connect with other people. I’ve also noticed that he quotes movies a lot word for word and becomes very explosive if he loses a game.

The teacher notes were much longer, but to sum it up, they talked about his tendency to play and work alone and that group activities were very difficult for him. They explained that he has trouble with noises in his environment and becomes upset if students are too close to him. His reactions are explosive and intense. He has the ability to focus for a long period of time on an activity if done alone but has a hard time focusing on a teacher talking or giving instructions. He is very creative and has a great imagination and performs well academically.

Then there was my own collection of notes, which to be honest was ridiculous since they were classic spectrum stuff. From language issues, sensory issues, eating issues, emotional issues, social issues, behavioral issues and school issues—they all looked like symptoms of Aspergers.

Wow! I was stunned after collecting all this information. How did I not see this? How did I not know?

As I reflect, I can see obvious reasons why this didn’t occur to me. First, we were going through our toughest years with my oldest when my youngest was showing these early signs of independence. I honestly saw it as a bonus. If I was dealing with my raging son for 3 hours, it was a blessing that my youngest son was content and happy in another room. Unusual yes, but never something that concerned me, I just thought he was an independent child who adapted to our circumstances. He always seemed to smile at me and give me eye contact and if he buried his head into my arms around other people I just thought he was shy. The fact that he played with his shadow or would talk in his own language when he was young was just his quirky nature, along with all of his other quirky personality traits, to me it wasn’t a symptom, it was my son.

As he got older, his sensory issues seemed to be something he inherited from his brother and his lack of desire for playmates seemed to be a side effect of not being able to have kids over because of his brother’s issues. If my youngest son threw explosive tantrums, I assumed he was copying the behavior of my oldest and the autistic child I babysat, it never occurred to me that he was having similar challenges. 

Then when his anxiety and depression appeared, I did become concerned. This led me to 2 separate therapists who at the time told me it was Post Traumatic Stress Disorder or an Anxiety Disorder, which was most likely triggered from his fear of living with his raging brother. But last week our Psychiatrist informed me that anxiety and depression commonly occur with children on the spectrum. I never knew that.

Honestly the list goes on, but I think you get the point.

As much as I can make sense of why I didn’t see the spectrum symptoms before, I still feel terrible guilt and shame as his mother. I should’ve seen this. It’s my responsibility to take care of my boys and I didn’t see what was going on, even though everyone else saw it.

So there we are, waiting in the hospital room for the neurologist to review all of my notes. When he comes into the room he kindly says hello and reaches out to shake my son’s hand. My son shakes his hand without ever looking up.

Then the doctor said with a tone of appreciation, “Your notes were so helpful, in fact, they’re the most comprehensive notes I’ve received in over 10 years.” Then he said, “based on everything I read, it looks like textbook autism spectrum disorder.” Then he added, “Even the school psychologist’s observations were clear to me, it’s like she was screaming, this kid is on the spectrum!”

He then explained that the depression and anxiety appears to be real and that it’s possible that my youngest has both spectrum and mood disorder issues. He then explained that the next step was getting the official evaluation with a Pediatric Neuropsychologist who will do a 3 hour evaluation of our son and determine if he will receive the official diagnosis.

As a word of warning, he told me I should have my oldest son evaluated since autism runs strongly with males in the family. I then asked, “Is it possible that my oldest son’s sensory issues and need for structure can be related to a spectrum disorder?” He kinda chuckled and said, absolutely! He then explained that sensory issues are spectrum features, not mood disorder features and he pointed out that his own mother has a mood disorder and that these individuals usually dislike structure of any kind.  “It’s possible your oldest has a mood disorder and spectrum issues, it’s not uncommon, I would definitely have him evaluated too.”

So now we’re waiting to see the Pediatric Neuropsychologist for the complete evaluation and definitive diagnosis. Hopefully sometime next month. As you can imagine I have a lot of mixed feelings I’m trying to sort out. But more than anything, I have hope.



2 comments:

  1. Wow! What a journey your family is on! Don't let the guilt of not seeing it get to you. You were doing the best you could in the situations you were in. It is often so easy to push the "important" aside while dealing with the "urgent", as has been the case with our family. We too are seeing issues arise with our youngest son now that our older daughter is getting healthier. It breaks my heart to think that I should have seen things earlier, and at the same time I have to keep moving forward and each day do the best that I can. Hugs!

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    1. Thanks Kelly, you’re right about the urgent taking precedent over the important. Things were pretty scary for a lot of years and our son’s recent stability is allowing us to focus on all those other issues. I’m so glad your oldest is on a solid path and doing so much better, and I’m sad to hear you’re seeing issues with your youngest, I had no idea you were going through that too. I have a feeling a lot of families go through this with the genetic make up of our families.

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