Alright, before you flame me, hear me out. I said I’m glad my son got the autism diagnosis, not that I’m happy he has autism. Of course I’m not happy he has autism! To better understand, you need a little background.
Ricochet was a super-hyper little guy, bouncing around from one activity to the next every three minutes. He was pretty happy, he was sweet as pie, and he was smart — crazy smart. I thought he was just a rambunctious little boy. After all, he was still little.
As I talk about in Boy Without Instructions, the proverbial poop hit the fan the day he entered Kindergarten. His teacher was constantly complaining about his behavior — he can’t sit still, he doesn’t pay attention, he wanders the classroom, he can’t write his name… For a full school year, his teacher constantly complained, but never once suggested an evaluation. Not. one. time.
So we placed him in a different school the next year. This time, the same notes about behavior were coming home, although in a much kinder fashion. “I can tell he’s really smart, but he’s not doing well with school.” When I was hearing the same feedback from a different school environment and a gentle and compassionate teacher, I took Ricochet straight to the Pediatrician. We did not pass Go!
A few months later, at just six years old, Ricochet was evaluated and diagnosed with ADHD. The behavioral specialist handed me a prescription and explained that it was the only thing left to do at that point, since we had tried behavior modification at home and school. I was devastated. I didn’t want to “drug” my child. I sat, paralyzed, as the world spun on around me.
Ricochet’s dad and I finally decided to try medication. Our little sweet boy was already calling himself “stupid” and felt he couldn’t do anything right. We could see the toll it was taking on him emotionally and we couldn’t let that go on.
Medication, behavior therapy, occupational therapy, and behavior modification at school and at help helped a great deal and we muddled through the next four years. Life was extra challenging, but it was better than before diagnosis.
Once Ricochet started fifth grade though, I began to notice that his social interactions were actually getting a lot worse than better. His peers were teasing each other to build camaraderie and all his super-literal mind could deduce was that they were terribly mean and hated him. He was constantly coming home in tears.
In tandem, as his social interactions spiraled, he started to need more order and rigidity in his life. He began watching the same things over and over all day long for weeks (one period it was MythBusters, then Garfield, then Top Gear, and so on). This was new for him. He was also asking more questions about what to expect in the coming hours, minutes, days, and weeks. He was becoming more inflexible.
I became certain that this kid had more than ADHD, SPD, and Dysgraphia. I was convinced he also had high-functioning autism. His dad thought I was nuts — like I had almost developed munchausen by proxy or something. He as sure I was inventing things that weren’t there. I was sure we were still missing pieces of the puzzle.
The next time we saw Ricochet’s therapist, I asked her what she thought about the behaviors that weren’t getting better as you would expect with ADHD and treatment, and the behaviors that became more prominent. Could it be high functioning autism (what would have been diagnosed as Asperger’s prior to 2014)? Her answer was a resounding, “yes,” although she didn’t have the capability to diagnose him. She asked the doctor to refer us to TEACCH for an autism evaluation.
We waited almost a year for that evaluation. When the day came, I wanted the diagnosis so bad that felt queasy and overly-nervous. Ricochet spent about an hour with the specialist doing the ADOS evaluation (apparently the Cadillac of autism evaluation tools), while two more specialists and I watched on the other side of the two-way mirror. An hour later they sat me down and told me they felt Ricochet “is best served by his current diagnosis.”
I was crushed. I had known not to want it so much, but I couldn’t help myself. I just wanted the school and others to understand my boy better. Autism gets so much more understanding and acceptance than ADHD, and I desperately wanted that for Ricochet.
Once I got home and read their two-paragraph report, I realized that they didn’t understand what I had explained to them. They wrote that he was a very good conversationalist with adults (which is correct), but that I told them that he is the same with his peers — which was the exact opposite of what I had said.
I decided that day that I wasn’t giving up on the autism diagnosis. I wasn’t giving up on discovering my son’s truth, so those around him could be more understanding. His therapist backed me up. When I explained the situation to the integrative meds doc, she said she thought he had an autism diagnosis all along. And my neurodevelopmental momma tribe kept telling me they could see autism in his behavior too. I wasn’t crazy, and I set out to prove it.
Over the next several months, our behavioral health office had a couple pediatric psychiatrists join the practice, we’d get on their schedule to discuss an autism diagnosis, then they resigned before it happened. Ricochet’s therapist, bless her heart, was not giving up either. The psychologist that was her mentor more than a decade before was known as an autism specialist around these parts, and she was going to see if she could see Ricochet.
While this psychologist now had full-time job as a clinical director of a group home, she agreed to see us on nights and weekends to do a full and comprehensive evaluation on Ricochet. He and I both loved her from the moment we met her. She gets these kids on a level few people can comprehend. It put us right at ease. We spent 2-3 hours with her one evening and again another Saturday. That was in early April. On June 9th, her report finally arrived in our mailbox.
I felt queasy as I tore open the envelope hastily, the report falling onto the kitchen counter. I held my head in my hand for support, and used the other hand to flip hurriedly through the pages. My daughter had come to oversee the commotion. She watched as I kept flipping pages and crying out, “Where is it? I just want to see the diagnosis, then I’ll read all this.” Then, on about page 12 or 13, there it was:
F84.0 Autistic Disorder -Level 1, Requiring Support, without intellectual or language impairment
F90.2 Attention Deficit Hyperactivity Disorder, Combined Type
F81.81 Specific Learning Disorder with impairment in Written Expression
I let out a delighted squeal and a “YES!” I think there was even a fist-pump involved.
My daughter looked up at me in confusion and said, “Momma!”
I quickly explained to her that I’m not happy he has autism, I’m happy that he finally got the diagnosis that fits, and will help others understand him better.
She sighed in relief. She thought I had certainly lost the small remainder of my marbles.
[Tweet “Could your child be hiding in plain sight? How difficult it can be to diagnose mild #autism.”]
It’s been a week, and it’s still taking some time to sink in. While I feel validated, and I know this will open doors for therapy and understanding, I don’t have a school to run too with these insights since it’s summer vacation. I honestly have been struggling with the fact that I don’t feel different. Seems wrong. I haven’t even told Ricochet yet, still trying to figure out the right way. He knows she was evaluating him for autism. He knows we were pursuing it to try to help others understand him better. Given that, I’m a little befuddled by why I haven’t told him. We certainly have time.
So, yes, I’m happy that my son was diagnosed with autism. Not happy that he has autism, just grateful for the additional lens through which I can look through to better understand my sweet boy.