Chapter 8 begins with Schuyler’s parents receiving a diagnosis, something they have been in search of for years now. After numerous appointments and evaluations, the answer they had been waiting for, was a letdown. Schuyler was given a diagnosis of Pervasive Developmental Disorder- Not Otherwise Specified. Having her parents explain it as, not knowing “exactly what the diagnosis meant” and “seemed almost like a cop-out” makes complete sense. The name of the diagnosis itself seems unsure. Her parents were expecting an answer to what was going wrong so they could begin to fix it. All they were left with was what she didn’t have, Autism.
As her parents read through the reports over and over again, something Dad said stood out to me.
“I knew Schuyler had been a bad test subject, particularly once she’d figured out she was being observed and decided not to cooperate.”
So many parents I go over evaluations with feel this same way. They want you to know their kid can and does do more. I think it’s important to reassure parents, especially those that don’t agree with results, that this is a snap shot of a given day and not reflective of all their child’s abilities. Also, Dad’s views here remind me, as a clinician, to get a detailed account of parent’s opinions and findings. This gives parents the feeling that they’ve been heard through the assessment process (especially for our pre-k and those coming in through the diagnostic center).
Although Dad felt like this newly discovered diagnosis wasn’t absolutely correct, he was happy that it opened doors for Schuyler to receive services. He continues to show his frustration with examiners, the world and himself in not being able to unlock Schuyler’s voice. He says, “She had questions, and lots of them, and the fact that we couldn’t understand them didn’t invalidate their existence, nor the urgency with which she was asking them,” “We’d failed by not finding a way to reach her inside her unique world.” This reminds me of the importance in accepting and realizing that each child is different. One routine therapy isn’t going to reach all kids on your caseload. You have to find a way that connects to them. You cannot expect them to adapt to your world immediately, you have to find a way to enter theirs.
Feeling incomplete after their initial diagnosis of Schulyer, their original Dr. refers them to a neurologist for additional hearing tests and an MRI. Finally, they are given her REAL diagnosis. It is nothing they wanted to hear. Up until this point, their search for a diagnosis was one that while frustrating, was filled with hope. In their minds, once they had the correct diagnosis, they could start working to ‘fix’ her delays. However, with this new diagnosis, Congenital Bilateral Perisylvian Syndrome (CBPS), came such harsh words. As the doctor explains congenital as a positive, “it isn’t going to get any worse,” and as a blow to their souls, “never going to get any better, either,” all hope dwindles away.
Leaving the Doctor’s office, Dad immediately looks for an escape. He heads to work and then off driving without a particular destination in mind. As he wraps up this chapter, we see him flash through all the stages of grief in just a few hours. Denial, as he reads articles about her condition, wanting doctor’s to dispute certain characteristics, not wanting these words associated with his daughter. Anger, as he rages at the church, screaming and throwing his soda can. Bargaining, as he banters with God asking for it to be him instead. Depression, as he lay on the ground head down crying. Finally, acceptance, at least for the moment, as he picks himself up to head home towards, “his family, our monster and the future.”
–Lindsey Nicklies Noonan, SLP at Bowen, Greathouse, and St. Matthews
JCPS Speech 
The grief the family feels after a diagnosis is so great. As clinicians, we need to be conscious of the feelings parents may have in response to the diagnoses we share during an ARC meeting. Although these meetings are ‘not our first rode,’ it frequently is for the parents.
After I read this chapter, it made me think about the need for persistence and the need to have a physician that will explore all options. If that doctor did not suggest the MRI, they never would have been able to get to a diagnosis. How many other kids like Schuyler are out there with parents not able to get a diagnosis because their physician did not explore all options? With a diagnosis, however, come the reality check of what is and what is to be. We often say “be careful what you wish for” and in this case, they were able to come to realization of what Schuyler’s diagnosis would bring.
Wow! So we finally get the definitive diagnosis in Chapter 8. I know that many of you, like me, were putting on a clinical cap to try and guess the diagnosis. I’ve never heard of CBPS and so of course, after closing my book, immediately googled the term. Overwhelming for sure. It saddens me to read about the toll Schuyler’s delays placed on the marriage of Robert and Julie. Marriage is such hard work and in the end they connected again which is good news for their daughter needing their unified support. I’m looking forward to reading more about this family’s journey. I really related to Robert’s internal discussion about grieving the loss of the future he had imagined for Schuyler. That would be so heartbreaking as we all wish for the best for our children, dreaming of how wonderful their life will be! Everyone deals with grief in different ways and passes through stages at different times. That is part of the healing. As scary as this diagnosis seems, at least they can look the monster in the eye and get to work accepting what lies ahead.
After reading this chapter, I thought about how the good feeling of finally finding out what her true diagnosis is was so overshadowed by the grief and disappointment that this diagnosis would be finite. You could feel any hope they had of (“She may get better. She might grow out of it. It may be something else.”) fade away and the reality set in. What a double edged sword . You work and wait so long for a proper and accurate diagnosis, then BOOM…you got it and don’t want it. I think all of us have gone through that with a family member or friend. You keep the hope alive in some way, only to get kicked in the stomach when you actually know what is wrong for sure, and it’s not good. She never seemed to have signs of Autism or a Spectrum Disorder because or her socialness and communication with others…still no WORDS. It would have to take a neurologist, MRI, and a lot of analysis to catch such a rare and odd condition.
Being in the Yale community likely helped with finally getting a diagnosis? Just a thought. I am eager to read to find out how her therapy proceeds.
Seems like we used to see that diagnosis “PDD-NOS” so often. Very interesting, and yes, probably because they were associated with the Yale community, that they had the MRI done and got a very specific diagnosis. The author continues to give such heartfelt insight into their struggle. It is SO hard not to read ahead!!
I liked this chapter because we finally got a diagnosis. I had never heard of Congenital Bilateral Perisylvian Syndrome (CBPS) before so this got me interested in reading more about it after reading this chapter. I was very curious as to what her “true” diagnosis would be. I think it would be so frustrating and stressful to see several doctors and not get a real answer. Like others have said, it is difficult to give parents a diagnosis because you don’t know how the parents are going to react. It’s important to give them positive points to this diagnosis- the abilities not disabilities associated with it.
Wow–this chapter gave us answers, and a deep look into what it’s like to find out that your child has been diagnosed with a life long disability. The line that stood out to be the most was “she wasn’t developmentally delayed. She was broken, and they would never e able to fix her. This was it.”
So often, I sit in meetings with parents of children who just can’t SEE that their child is on the autism spectrum or may have a mmd or fmD. They fill out rating skills with information that seems completely made up based on the kid that I and the teachers have worked with. They listen as the school psychologist tells them the scores of the cognitive testing and/or autism scales, but don’t see that their scores are the only ones out of line. And they end up accepting the disability of “developmentally delayed”….despite the fact that there is evidence to suggest so much more.
This chapter made me see things through the parents perdpective. Despite the fact that they want to know why their child struggles, it is even more difficult for them to know that it will be a life long struggle. This part of their journey is so difficult.
I think that it would be very frustrating to get an initial diagnosis that is kind of a “catch all” It seems hard to explain to parents that the diagnosis doesn’t have to drive their treatment or that providers can adapt treatment to a changing diagnosis. But if you are in their situation it does really stress the importance of giving parents specific and functional information that they can use.