It took me a long time to get this autism evaluation for Jack. It wasn’t because of any problems with our healthcare coverage; most of the delay was due to my own trepidation. Some of my hesitancy had to do with knowing how much time and energy it would take to go through another evaluation process, and some had to do with the prospect of having yet another condition to manage. And of course there was the part of me that said my child is fantastic just the way he is! What would an evaluation get us anyway? Was I looking for more things to worry about?
I wasn’t sure that my reasons for doing this were good enough, but ultimately I listened to the niggling voice that told me that there were still unanswered questions I had about Jack.
With that vague feeling of “there’s something more here” guiding me, I sent the following note to Jack’s pediatrician in February:
I am hoping you can help us with getting Jack evaluated for autism spectrum. There have been many things over the years that have led me more and more to question if Jack is on the spectrum, from his odd reactions to various things (changes in routine, noises/sensations, the strange ways he describes how he feels and even his hypersensitivity to medications) to his difficulties with interacting with kids at school (he continually has fallouts with kids because of the way he directs play and his inflexibility in types of play he will engage in).
The pediatrician replied that our request seemed reasonable and he immediately sent off a referral. Easy peasy.
Not long after, a staff member at the Autism Spectrum Disorder Center in San Jose gave me a call to ask me some pre-screening questions. Then a huuuuge packet of paperwork was mailed to me. I had to provide details for every single developmental milestone and medical treatment I could think of, fill out behavioral surveys, and send an evaluation form to school for one of Jack’s teachers to complete. Jack also had a self-assessment to fill out. Along with all of the paperwork, I had to submit copies of Jack’s IEP documents and the neuropsychological evaluation report we got in 2015. It took me a good 6 weeks to gather everything and send it back.
(And I just realized that I didn’t make copies of it. SMH…)
Even while filling out all that paperwork, I went back and forth on whether this was necessary. Some days I thought it was all a big waste of time and other days I knew we were on the right path. By the time I filled everything out, though, I started to see that it was very likely this would lead to an autism diagnosis. Never in 11 years of parenthood had I filled out forms that had these particular questions, questions that hit the nail on the head, like “Has he ever used words that he seemed to have invented or made up himself; put things in odd, indirect ways; or used metaphorical ways of saying things (e.g. saying ‘hot rain’ for ‘steam’)?”
Why yes, yes he has. “Chicken skin filled with whipped cream” immediately came to mind; that is the term he used to describe feeling weakness during chemo. At the time his oncologist had given me a confused, questioning look, which became fairly routine during treatment.
I sent the completed paperwork off in April and we waited for our July appointment (part of the delay was due to our schedule, but mostly it was Kaiser we were waiting on).
That brings us to last Friday. Joe and I (Jack’s biological parents, per Kaiser’s request) met at the center along with Jack. He sat in the hallway drawing while we were asked about our concerns and a lot of other questions that were just slightly different from the questions on the million forms I filled out beforehand. At some point Jack was led off into a testing room and not long after, we followed to observe a portion of the evaluation from an observation room behind one of those mirrored windows.
This is the part that really hit home for us. We got to see how Jack responded to questions about his emotions and how he went about solving puzzles and playing games of pretend. We noticed for the first time (with the aid of the psychologist who was observing everything with us) that he didn’t show emotion on his face regardless of whether he was talking about his likes or his dislikes, whether he was sharing a memory or telling a story. He didn’t make eye contact, either. When asked about what various emotions feel like, he became noticeably uncomfortable, shrinking in his seat, sitting on his hands, and twisting his body. He couldn’t clearly differentiate between emotions, and he couldn’t describe what happy feels like at all. When asked to tell a story while pretending with random objects (a playing card, glasses, a ball), he was very literal and every single object was exactly what it was (although he did say that the ball was sentient).
We were stunned. Not because the behavior was out of character—it was all quite within the realm of what can be expected from Jack—but because for the first time we were seeing the behaviors from a clinical perspective and outside of the context of a home environment.
After the observation period was over, we went back to chat with one psychologist to review what we saw and fill out yet another form while Jack completed his testing. The two psychologists then convened to compare notes and shortly thereafter we were given an official diagnosis: Jack is on the “high functioning” end of the spectrum. His ADHD diagnosis was also reaffirmed, but reclassified to Inattentive Type instead of Combined.
So where do we go from here? We’ll get a detailed report within two weeks, along with a referral for therapy to work on social skills. There will probably be more but we’ll come to that in time.
If you’ve been through an autism assessment with your child, I would love to hear more about your experience! How as it different and how was it similar? For those of you who haven’t been through it but are considering seeking it out, I hope this helps and feel free to ask questions.