Lucy knows Landon is different. She knows he doesn’t speak yet. So she sweetly asks him hundreds of questions each day in the same format:
“Landon do you want orange juice? Yes or no?”
“Landon do you want your grey shoes? Yes or no?”
“Landon are you taking Monkey to school today? Yes or no?”
“Landon will you play with me? Yes or no?”
At the beginning of June, Landon had a pretty intense evaluation by the school district to see which services he would qualify for when he graduated out of the early intervention program and came under their care. We were shocked by the results, and most shocked by the analysis that he was in the “clinically significant” range for Autism Spectrum Disorder. Autism wasn’t even on my radar. I’m ashamed to admit that when I thought of autism, I thought of the most severe and extreme cases of kids totally absent-looking, banging their heads on the walls. That’s not my kid. He loves people. Sometimes he loves them so much it hurts…
So I started this list. And I thought, ‘I’m going to make a list of Landon’s quirky behaviors and it will prove that all the things he does are just normal three-year-old things.’ And then I filled up the front and back of a piece of paper. Seriously? I started questioning every thing I was feeling. What was causing me to press so hard against this?
Armed with the school district’s assessment and my list, I took Landon to his three-year well check. The poor, sweet nurse practitioner who asked, “So how is everything going with Landon?”
“Well, sometimes he does things that are sort of weird. And maybe some of the weird things that he does are getting a little more weird.”
“What do you mean?”
“Well, last week I was outside grilling. I knew the grill was hot so I made sure to talk to Landon about it and why he shouldn’t touch it. I made him say hot [“ho, ho”]. I went in to get the food I was grilling and left him outside with my husband. When I came back, both hands full of food, he gingerly walked over to the grill and pressed his hands against it. He never screamed or cried, he only tried to rub the heat off when his skin began to blister.”
“That’s pretty alarming. Anything else?”
“Well, he likes to scream at his baby brother to watch him cry. It does not feel like menacing behavior, just exploratory. He builds elaborate train tracks in his room and gets mad if anyone tries to put actual trains on them. Actually, I made a whole list of unusual behaviors. Do you want to see it?”
“I think I’ve heard enough to know we need to consult someone with a little more expertise.”
And with that I left the appointment with a list of neurologists to consult
If you’ve never thought of autism in the United States as an epidemic, you’ve never tried to get an appointment with a doctor specializing in diagnosing it. Wow. Three months. Six months. Every time we made a call, the waiting lists grew longer. We heard the importance of early intervention and we heard the hold music. Both lingering ominously.
When we finally got Landon tested, he did quite well. Autism tests were made for him: they’re play-based with only adults in the room. No other kids to fend off. There are snacks! And bubbles! He did well yet the doctor still said he had autism! How dare her! And then she began to talk “intensive therapy sessions”.
I left feeling like the only thing the doctor had proved was that he doesn’t have autism. He is a little puzzling. His receptive language is excellent. He’s funny. He LOVES hanging out with adults. Food is the way to his heart. He did great. Let’s get a second opinion.
We found another doctor. Very fancy titles. Professor at a very fancy university. If you leave a message with his office, he will call you back on Monday. He only makes calls on Monday. If you miss his call, you have to hope to catch him the next Monday. We missed his call. When we finally talked, he had the audacity to say it sounded like a severe spectrum disorder. It’s not severe. You haven’t met him. Everyone loves him. Severe?
During this time Landon started school. By God’s grace and divine intervention, his sweet teacher is amazing. VERY qualified. VERY educated. So I gave her a couple weeks to get to know Landon and then called.
“The neurologist said Landon has autism. Have you felt that to be accurate?”
“Well, I’m not one for labeling kids but I’m thankful to know you’ve been pursuing that for him because I’ve seen quite a few red flags during the first two weeks of school.”
“Yes. I actually have a son and grandson with autism so I feel very comfortable to judge it’s characteristics.”
” Oh really?”
“I would agree with your doctor’s diagnosis.”
Five professional opinions later [but seriously…] I’m the only one questioning whether or not my son has autism.
And then came that moment. Wondering why I was still shocked to hear it. What does it really change? It only means we’ll commit more time to his therapy.
It’s not the end of the world. And it actually explains a lot. And calms some of my anxiety to know we could be on a path towards healing. Autism can be overcome. We love him so much. It’s an honor to fight this with him.
I think I’m the one who needs to do the most changing right now. I need to stop asking over and over if they’re sure that they’re sure that they’re sure he has autism. I need to change the question. How do I help my son be the best version of himself?