Thursday, September 18, 2014

Still Looks Like Asperger’s



My youngest son continues to struggle with growing anxiety, but I keep circling back to another feature.

Asperger’s.

I know that the first assessment done a year ago concluded that he wasn’t on the spectrum, but the admission of the evaluator not reading the notes we gave him on current and past behaviors, leaves me with so many doubtful questions.

It’s my understanding that under the new DSM-5 that for the first time, doctors will be allowed to consider a patient’s history instead of only the behaviors present at the time of evaluation. Our doctor chose not to do this, but only evaluated our happy-to-participate child. You see, my son was thrilled to be taken out of school for the assessment because he hates school so much, so he was engaged and willing in every test.

What the doctor didn’t see was my son pushing furniture around when becoming frustrated like he does at school and isolating himself, instead he was engaged.

Did this skew his evaluation?

I tried to share many of the behaviors we’ve witnessed over the years, but he dismissed them all. He even dismissed the school psychologist’s assessment that according to a neurologist we saw was screaming, “Your son is autistic”.

Here is one example:
I explained how our son hates toys and only wants to play with video games and talks in long monotone monologs about the game Minecraft.

The doctor’s response was, “We do not take into account ‘electronics’ as a child’s restrictive play.”

However, just tonight my son talked to my husband and I for over an hour about the history of video games. He showed us a chart he made diagramming all video game consoles dating back to 1973! He described in great detail the success and failures of the gaming systems, naming game developers dating back to the 1980s, such as Namco and Kaname. I haven’t even heard of these companies! He was able to provide interesting facts, such as how the sound production of Pac Man changed from the arcade game to the home system and how the home system had very painful game sound effects that failed to match the original arcade game, and as he described, “disappointing users”. This is a game that he’s never experienced first hand, but learned about on his own through online research. He also went into great detail about different gaming controllers and the difference of 1-bit and 32-bit visual graphics over the years. His lecture didn’t stop there, he even pulled up old commercials on YouTube dating back to 1985 showing me the original console advertisements. This all from a 9 year old boy!

How is this any different than a boy with Asperger’s who knows the history of horse racing. Does the fact that it’s electronics really make a difference in an assessment for ASD?

His voice was monotone and uniquely formal at times. He said, “Come again?” when needing me to repeat a question and acknowledged our leading questions by saying, “Ahhh, I see where you are going with this.” This is definitely unique language to our family and seems older than his age.

Our oldest son shared that our youngest sounded like he was giving a lecture to a class when he talks. He added, “He always sounds like that.”

This conversation was a special experience for my husband and I, we were stepping into his world and he was happy to share it with us. Compare that to earlier in the day when he told me that my questions about his day at school were annoying since they were a waste of his time.

Combine that with him spending recess alone everyday at school playing video games inside his head, not wanting to play with the other kids.

I can’t for the life of me see how this example doesn’t qualify as a restricted interest seen on the spectrum that’s affecting his social skills.

And for that matter, all the other features we’re seeing in his behavior.

Why does it matter?

Well considering that I had to pick him up early from school this week after he was acting out and refusing to participate and that his psychiatrist wants to double his dose of Prozac, I need to know what the underlining cause is of his challenges so that I can take the best course of action to help him.

This is why labels matter.

It points me in the right direction towards helping my little man.

So I’m going to seek another assessment.







2 comments:

  1. Keep fighting for that new assessment and correct diagnosis it will really help. My son was diagnosed at 2 1/2 with autism but is now considered Aspergers. He also has ADHD,anxiety, mood issues, meltdowns with aggression. My daughter was diagnosed with Aspergers a few months before she turned 7 this year. She also has ADHD and generalized anxiety disorder. The first school psychologist disagreed with the private psychologist and pediatrician because she said she could make some eye contact and was wiling to do the assessments and interacted well with adults. Of course they found that she was anxious about her answers and corrected them many times to make sure they were right. So we hired an advocate and she brought in a new school psychologist that found her to be autism like. We go next week to try and get her an IEP to help with social skills and other issues. She doesn't like loud noises or kids talking while she is working. I have had to pick her up from school and she has had to be carried out of the classroom because of hysterical crying and refusing to follow directions because the schedule changed. She hates schedule changes and only eats a few select foods. She wants friends but the kids consider her weird. So she spends recesses walking by herself. She has no idea of personal space and can't pick up on social cues. The teacher doesn't encourage her to interact in group activities and instead lets her isolate herself.
    Continue to fight for what you feel in your gut is the correct diagnosis. I appreciate reading your blog because it gives insight. All of these diagnosis is like fitting a puzzle together and hoping that something works. We are at wits ends with my son and his meltdowns but we haven't gotten an answer or medication that helps control them better. Thank you for sharing!

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    1. Thanks for your feedback Michelle! The descriptions you share sound a lot like my youngest son. I think the thing I can't get past is the gut feeling I have about it being more than anxiety and depression. I will keeping following that gut feeling.

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