The Diagnosis 2


In my last post, I wrote that I at first didn’t want a label for my son…until I needed it.

A big part of me didn’t want a “label” for him…but then I wondered if it would be easier and help me explain his behavior to others…and myself if he did have one.

I decided we needed to know “the answer”.

One big question I’d like answered is: Is he “normal” or is there really something physically/neurologically different about him? If I could peer into his mind, would there be some sort of sticker in there somewhere, a label marked “Normal with a grumpy disposition?” or “Aspergers” or “ADHD” or “IHNO” – I Have No Clue.

The family therapy was a great start for us – and again, it was the best first step we made. For me, it was the beginning of an acceptance of who my son is…and the acceptance that I did need outside help to learn how to help regulate my son’s moods and anger issues.

While Family Therapy did help in many ways, we reached a point where we felt like we were spinning in circles or at least beating around a big giant bush that was obstructing a clear path forward.

Through prayer and many conversations with very good, wise, and patient friends, we decided it was time to get a fuller perspective and understanding of what exactly makes life so hard for our son. At that point, our family counselor had mostly said he didn’t think it was autism/aspergers so I decided maybe we should look into ADHD as a possibility.

Long story shorter, we got him set up with a new psychologist  – thanks in GREAT part to a good friend’s referral. We specifically asked him to do a comprehensive and thorough evaluation so as to leave little doubt about the answer. (We were tired of all the uncertainties and back and forths.)

Thankfully, we had really found the right doctor this time, he is incredibly thorough and took as many extra steps as needed to get to the right evaluation.  My husband and I and our son spent an initial visit together and then our son spent two afternoons with him doing the ADHD survey evaluation.

The last day, after all the testing finished, the Dr. came out looking a little perplexed.

“Well, I really don’t think he has ADHD,” he said very certainly but then hesitated before adding, “….and I don’t think it’s autism….”

But he kind of trailed off at that point and said he wanted to spend more time looking over the results and talking with his colleagues about it.

“I’m not certain yet what it is, but I want to figure him out.”

To which I quickly responded,

“You and me both!”

Though I didn’t get the final answer I was hoping for that day, it was reassuring in a way to know even the professional felt perplexed by my son!

After about a week, the doctor called and asked my husband and I to come visit with him and we spent a little over an hour going through a verbal questionnaire (different from the written one we’d already handed in). This gave us the opportunity to delve into our answers more and give practical real-life examples of our son’s behaviors and struggles.

After going through that questionnaire together, he said he believed we could put autism back on the table. He explained a little about how the world of autism was undergoing many changes in how autism is diagnosed and how the understanding of autism was expanding beyond the stereotypical traits most people associate with autism. Asperger’s Syndrome, as it had been called for decades, was now included in the general “autism spectrum” instead of a stand alone condition. In light of the new diagnosing protocols (DSM-5), he really felt our son could indeed “fit” into the autism diagnosis after all.

He handed us the evaluation results with his official diagnosis:

High-Functioning Autism.

Some parents may feel crushed to hear those words about their child and see them typed out so officially in big black ink.

Honestly, I only felt like crying because we had finally reached it.

The Answer. 

The verification of what I’d suspected about him since he was about 4/5 and now he was almost 10. That’s a whole lotta years of not knowing what’s going on with your child and not knowing how to help him or respond to him and now knowing why?! Why, Why?! Why is he like this?!

Am I happy he “has autism”. I wouldn’t say it like that. What I do say is –

I love my son.

After that day, I felt incredibly relieved and satisfied knowing there is something that explains his behavior.  I didn’t know exactly what it all meant or where we’d go from there. As a friend put it to me –

At least now I knew what road we are on. 

(See all posts about our son and autism here)

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