“My Story…” Monday: A – The Autism Diagnosis

(You can catch up on A’s story right here: The Pregnancy, The Birth, The Infancy, The Quiet Toddler, Advocating, What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend)

 

As it worked out, the appointment we were given to go to the city for an evaluation at the autism center was in August of 2007.  A. would be just over 2 1/2 at the time.  Coincidentally, it also fell during the days that my parents would be in the Midwest visiting us.  Though it certainly wasn’t on my list of “things I wanted to do with my out-of-town family”, I wasn’t going to turn it down.  It ended up being a good thing, as my mom was able to babysit then 1 1/2 year old C. while my dad and I drove A. in to the evaluation.

 

I remember everything about that trip.  I remember stopping at Burger King and grabbing two black coffees and two Hamlets… and a side of hash browns for my quiet little boy in the backseat.  I remember that the sun was still so low in the sky as passed through Tipton on our way to Indianapolis.  I remember my dad suggesting I change lanes since I kept getting stuck behind people who were turning and my refusal because I knew that other lane eventually ended (never mind that I had a good three miles before that happened).  I remember the stack of paperwork I filled out and listening to the conversations around me.  I vividly remember the mother of a preteen filling out a form who questioned how she was supposed to assign a numerical value to the grades he was getting in school.  Ultimately, she concluded that since “D” was the fourth letter of the alphabet, he must be getting a 4.0.  I admit that I stifled a grin at that one.

 

And I remember the big, circular rug they had in the waiting room.  It had the entire alphabet spread around, with a picture to represent each letter.  A. loved it.  He loved it when I’d ask him to find different items or if I asked him what he could find that started with “?” .  I couldn’t stump him and neither could Papa.

(A. used to love to throw clothes in the crib with C… it made her collapse with giggles.  Here, you can see him jumping, which happened a LOT.)

When we were called back, we went into what looked more like an office than an exam room.   There were lots of toys for A. to explore and a thick, cushy leather chair for me to sit in.

 

And the questions began.

 

“So how many words does he say?”

None, really.

“Does he engage in any repetitive behaviors?”

Well, he jumps.  A lot.

“Does he ever make impulsive, fearless moves like try to escape from you or run outside without telling you?”

No, never.

“Is he extremely particular about how his toys or books are arranged?”

Not really.  He might line things up, but he doesn’t care if I change it.

“Any history of mental illness?”

Well, I battled some post-partum depression after my daughter was born at 24 weeks gestation

“Can you tell me about how many tantrums he has?”

I can think of two…

“Per day?”

No… two.  Total.  I can only think of two notable tantrums he has ever had.

“Describe his behavioral problems..”

Um.  I don’t know.  He’s a happy little kid.  He’s generally really good.

“How is his eating?”

Fine.  Good, I’d say.  He had Crab Risotto with goat cheese last night. 

“Is he detached, would you say?”

He’s my snuggle bug.  He’s affectionate.  His eye contact isn’t great, though…

 

And on and on it went.  I worked so hard to be honest and accurate.  I didn’t want to “lead” the therapist to any particular conclusion and I wasn’t trying to hide anything.  While a part of me was devastated to think my child might be autistic, another part of me was so desperate for an answer.  So I just did my best to give a clear, factual account of who my little boy was.

 

Do you have any idea how hard it is to hear someone break down your child’s entire character into a series of simple questions?  It felt all kinds of wrong, but I knew he was doing the best  he could with the evaluation tools that were available.

When all was said and done, the therapist sat back in his chair and looked me in the eye.

 

“I don’t believe your son is truly autistic,” he began.  ”His behaviors just are not consistent with what we typically see with autistic children.”

 

I could tell he wasn’t done.

 

“But there’s something going on there.  The fact that he’s non-verbal at this age.  The jumping and flapping of his hands.”

 

I waited.

 

“My report is going to list A. as being on the autism spectrum with a diagnosis of ‘pervasive developmental disorder, not otherwise specified’ (PDD-NOS).”  (Truly, this diagnosis is a lot like saying, “We believe something’s probably wrong or off, but we just really don’t know what.”)

 

I thanked him.

 

I left with a diagnosis… and the exact same child I had walked in with.

 

(Next week I’ll tell you about the time I got all feisty with a psychiatrist and also our vist to the neurologist… oh, yes, there’s a lot more to this story…)

 

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12 comments to “My Story…” Monday: A – The Autism Diagnosis

  • Marci

    Our stories are so different, and yet I can relate to how frustrating it is to leave with a diagnosis like that. My son has a lot of port wine birthmarks on his left arm (and his torso) and his left arm is slightly shorter and smaller than his right. We went to a dermatologist who told us nothing was wrong at all. Then to an orthopedic surgeon who said, “Your son has Sturge Weber Syndrome…look it up….and call if you have questions. But don’t worry about all of the major issues, he will probably never deal with them.” I looked it up…my son had absolutely none of those issues. So I had to go back to my pediatrician who sent us to a genetic counselor…which took another 4 months. (In short, no one really knows for sure what is happening with my boy. He’s normal now, just has one arm that’s a little smaller than the other. No one can tell us absolutely why that happened.) Your story is reminding me of all the emotions I went through during all of the craziness of going to doctors and getting different reports each time. I was so grateful then that the Lord was ultimately in control. He had knitted my boy together in my womb and would be exactly the child God wanted Him to be.
    A is exactly the boy God wants him to be. He has a plan for him that is greater than anything we can imagine. I am grateful for him and his story. May it lead others to know Him who hold the world together. <3

    • Thanks so much for sharing a little of your son’s story, Marci. This: “A is exactly the boy God wants him to be. He has a plan for him that is greater than anything we can imagine.” touched me so very much… it is spot-on true and a great reminder for any parent who is struggling with worry and questions about a precious child. Thank you.

  • I’m really enjoying getting to “know” your son through this series. I’m so sorry though, that it was such a hard journey for the both of you. My hubby has two brothers with autism, one who is already over 30. Back in those days, I can only imagine the stress my MIL must of gone through, where there was not nearly as much diagnosic information as there is now. Looking forward to next week, as I can read all about your feisty attitude ;).

    • I think you’re very right in that it must have been so stressful to not have as much information available. I imagine your MIL probably had lots of questions that were hard to answer. On the other hand, we were probably all a little better off in the days before Dr. Google would freak us all out!

  • Well I am happy the diagnosis was not autism, but that non-diagnosis is pretty cruddy. I hate that so many of the “answers” are kind of non-answers. I wonder if your son was an itty bitty thing if anyone would’ve even been to shook up about much. I wonder if they’d have sent you to speech therapy and called it a day.

    • Well, in fairness, I’m the one who initiated a lot of these procedures. It really ISN’T typical behavior/development for a child of that age. A’s journey has been such a long, complicated affair with so many unexpected twists… it was so, so hard to even know what we might be dealing with. I don’t think his size impacted the medical community’s diagnoses/recommendations for him… I think it just affected what random people thought/assumed about him out in public. And people can be very annoying. :)

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