We live in a city that is home to one of the nation’s top pediatric hospitals; it’s one of the reasons why we chose to move here nearly 2 years ago. It also happens to be a teaching hospital, which I know has many rewards, but also its downsides.
My son was recently evaluated by the psychologists at this hospital, and then later diagnosed with autism.
I quickly realized that the evaluation would be conducted by a student (only 1 year away from her Ph. D) and supervised by one of the clinical specialists. She spent about 2 hours with my son in a very small, bright room with nothing other than a table and 2 chairs and a few toys. She had stickers on hand for reinforcements while her supervisor watched from the other side of the 2-way glass mirror. After escorting Ethan to the testing room, I was kindly told to wait in the lobby. That’s fine, but I would have liked to tell her that she picked the wrong toys, and that he actually finds stickers rather uninteresting.
I knew she was doing an IQ test, but I wasn’t aware (because I hadn’t thought to ask) that it was the Stanford Binet. Ethan is deaf and used an interpreter during the evaluation. The fact that the IQ test they chose was inappropriate for a deaf child could be a whole different post unto itself.
I’m no stranger to hard news when it comes to my son, and driving to this appointment I prepared myself for the inevitable. This is what I was not expecting:
The student and the supervising psychologist met me in the lobby and then escorted me to a tiny room with a 2-way mirror. She and I headed into the room while her supervisor sat in the next room to observe. I gathered that he was observing how she broke the news (and there was plenty of it), and how she responded to my reaction. This felt more like being in a simulation than the real thing. I felt reduced to lab rat status, not parent of a special needs child who was about to become even more special needs.
She led the discussion with the data collected about his IQ, and then began to defend their findings before I had a chance to respond. She spoke repetitively about how they feel they got an accurate view of his abilities since they had an interpreter and used stickers for a reward.
Stickers are something that he sees at every single doctors appointment or therapy visit and he always just walks right by them. As far as the interpreter goes, Ethan had never met this person and had no prior experience with using an interpreter as he attends a deaf school where everyone in his environment signs. I think the use of an interpreter was pretty abstract for his little 4-year-old mind to comprehend.
I can’t help but wonder how the results might be different if I’d been involved in even the smallest way in setting up the assessment. I didn’t share these thoughts with her; instead all I could do was ask questions. Some of my questions were apparently tough because she said that no parent had ever asked them before and she’d address them in the best way she could, but that her supervisor would also need to weigh in.
Yeah, if he were in the room to answer my questions that would be Awesome! But he can’t because he is instead being oddly voyeuristic and watching us both flounder from the other side of the funhouse mirror!
I was seriously thrown off guard. I was in shock over the IQ data and I was speechless over the way this whole thing was set up. I had too many questions flying around in my head to adequately deal with the situation and though I remained very calm, I did at one point ask her to pass me a tissue. But never did I once put her in a position where she should have felt the need to defend anything, and that was probably my mistake. Some of what was said was indefensible. Yet somehow she took a defensive stance very early, probably because of her prior experiences with other parents being totally freaked out.
By the time we got around to discussing the autism diagnosis, I was really glad to be rolling a voice recording of the session because the words just all started to blur into one big hazy fog. I am only aware of what was actually said because I’ve played it back a few times. In so doing, I’ve been reminded that the supervisor left his post to come into the room to answer a question or two, only to duck out and back into his sneaky spying spot.
I don’t think this is in any way appropriate. It’s fine to hide in the “spying spot” if you’re assessing a patient’s behavior, but I find it morally and ethically reprehensible to sit in that room on the other side of the 2-way mirror and watch while a parent is given life changing emotional news.
As long as I’m such an integral part of her training, then why wasn’t I offered a chance to fill out an evaluation form from my point of view? I guess the perception of the family member just isn’t valued in this particular setting.
I’m going to contact our family relations division and see what can be done about it. I don’t mean to tattle or exact revenge, but if my complaint can ensure that no other parent ever has to sit in that totally surreal moment with a complete stranger watching through the glass, then it’ll be worth the time.