“If you have seen a child with ASD (Autism Spectrum Disorder), you have seen ONE child with ASD.” Autism is a spectrum of neurobehavioral disorders with manifested symptoms in an individual child that are unique (Mark Mancino, M.D.). This means that the difference between mild ASD and severe ASD, plus everything in between is profound.
I have suspected for a long time that Caleb’s unique “quirks” and challenges were not well explained by his diagnosis of Sensory Integration Disorder when he was 3 years old. I would read a description of ASD and think, “that’s definitely not Caleb.” Then, I’d read another and think, “that sounds a lot like Caleb.” We’d go through cycles of “good” times, and then cycles of really hard times. I would try to come up with other explanations, “he’s tired/sick/getting used to a change, it’s the sensory stuff, etc.”
As a counselor, I’ve learned that pursing a diagnosis of any kind is not a black or white process. Whether the diagnosis is depression or autism, most of us have some preconceived ideas of what said diagnosis looks like, usually based on someone we know or saw on tv with the same diagnosis. When we see someone outside of those preconceived ideas, we immediately form an opinion about the validity of said diagnosis. Friends, we must suppress our urge to invalidate someone else’s experience/feelings/diagnosis based on our own life experience or lack thereof. If I am confused about something, I assume that I do not understand it yet.
Since my suspicions about Caleb were not going away, I did some research and then reached out to Caleb’s pediatrician asking for the next steps in evaluating Caleb. Her response was, “Caleb is not autistic. He makes eye contact.” I was hurt and angry. In 2 short sentences, she’d completely invalidated the thousands of hours I’ve spent with Caleb (not to mention the fact that NO parent would want their child to be autistic).
What I WANTED and needed was to understand him better, and to have more resources for helping him. What I wanted and needed was to be heard. If Caleb is autistic, Josh and I need to know. His teachers need to know. Discouraged, but still determined, I made an appointment and armed myself with pages of notes I’d taken on Caleb’s behaviors based on my own observations, as well as his teachers. I was incredibly nervous and keyed up at the idea that she would continue to base her opinion solely off the 15 minute interactions she’d had with him, over my own experience with him.
Ultimately, (and thank God) we ended up not being able to see her and met with a different doctor that day. He listened well, asked questions, and even made copies of my notes. He put in a referral for the developmental pediatrician. Once the referral was processed, I made an appointment with the developmental pediatrician. At the appointment, Caleb and I spent 2 hours with him. He listened, took notes, and gave Caleb a series of tests, in addition to interacting with him. I filled out several assessments while we were there. Then, he sent me off with packets of more assessments for myself and his teachers to complete. Once we finally got all the materials we needed, I waited well over 2 months to hear back. During this time, Josh and I decided Caleb probably wasn’t autistic. Then, after a very difficult night, I reached out again asking when I’d hear something.
Less than a week later, I met with the doctor and he talked to me about why he was diagnosing Caleb with Autism Spectrum Disorder. All the hard work, time, and effort had finally come to a conclusion, and I felt…a little surprised, but also not surprised, relieved, concerned, and numb. Yes, one person can feel all those things simultaneously.
My hard work is far from over, this is just the beginning of continuing to advocate and fight for Caleb. To get him more OT, speech therapy, and hopefully ABA therapy. To aid others in understanding and helping him, and to set him up for the best possible life and future. If you are the praying type, I would covet your prayers and encouragement.
My next post will be about why Caleb has autism, because his symptoms are on the milder end of the spectrum, it makes it even harder to explain and conceptualize. The post will be as much for me as it is for you. Stay tuned.