By age 5, we were confident sufficient data and experience had been gained with our son to proceed with obtaining a definitive diagnosis. In short, we wanted to know precisely with what we were dealing. We had little idea that health insurance would be a barrier. I chose my profession for several reasons, among which include high degree of autonomy, likely middle class compensation, and, it was assumed, better health benefits than private market positions. My wife and I were in for a shock. Let me explain how we got there.
We quickly determined to rely on a developmental pediatrician, as opposed to a child neuro-psychologist, psychologist, or psychiatrist for diagnostic testing. In large measure due to a recommendation from our pediatrician. In hindsight, any would have been sufficient and we should have gathered information on which would be less expensive. Now to the shock.
As we got our ducks in a row for managing the cost, we were rudely surprised to discover that, due to the peculiarities of health insurance in the US, the only developmental pediatrician in the metropolitan area in which we reside, was out of network. Meaning that we would have to spend $9,000 in healthcare to meet our out of network deductible, before our public university provided health insurance would cover 50% of healthcare costs thereafter. Better health benefits my arse.
The developmental pediatrician charged us approximately $3,000 for the testing leading to diagnosis. Then, there are the quarterly follow up visits at a painful $165 per. We never, and will never meet the out of network deductible. I’ll eschew offering a lengthy rant on the politics of healthcare in the US, but will say that our political leaders ought to be ashamed. (Particularly the current scumbags who passed the AHCA through the US House of Representatives. An abomination of all that is politically holy and sacred about democracy and our constitution! Setting aside the, on my view, theological hypocrisy many who voted for the AHCA). That aside, at least we were able to claim some of these healthcare expenses as income deductions on our annual taxes though, not enough to make much of a difference.
Keep in mind that as a single income family, pursuing a career in higher education, we’re just barely (lower) middle class and the tax system in the US is skewed toward the wealthier classes. Just stating a fact, not attempting to stake a normative or ideological claim. I chose this profession with eyes wide open, however, I did not anticipate a special needs child. Whoever does?
The diagnostic testing for our son, included a half day of individual interviews and observations with the developmental pediatrician, in conjunction with previously written reports and questionnaires submitted by us and our son’s school teacher. Based on this data and observation, the developmental pediatrician returned a diagnosis for our son of Autism Spectrum Disorder – Asperger’s Syndrome punctuated by acute Attention Deficit Hyperactivity Disorder. Also, the developmental pediatrician strongly encouraged us to get me tested as, on the opinion of the developmental pediatrician, I seemed to exhibit behaviors consistent with Asperger’s throughout the diagnostic process.
Let me be frank. I had no idea what this meant for my son or I and what we were about to experience as a family. Difficult enough to process my son’s diagnosis let alone be told that it was highly probable I had the same condition. I was feeling overwhelmed and very concerned for my son. My wife, she was full-speed ahead, feeling relieved we knew with what we were dealing. Then, there were the recommended treatments.
The recommended treatments for our son included eight to ten weeks of parent child interactive therapy (PCIT), occupational therapy (OT), social skills group therapy (SSGT), continuing with speech therapy at school, and a prescription for an ADHD drug therapy. May have mentioned I was overwhelmed though, we were happy to have a definitive diagnosis. Given our limited resources and woefully inadequate health insurance, we had to make some hard choices about which treatments we could afford.
We decided to prioritize the recommended treatments beginning with PCIT given that I was just about to start my Summer break and we could finish PCIT over the Summer. OT would follow, as we were concerned that our son catch up a bit in his fine and gross motor skills before and as he began kindergarten. Then, we would shift to SSGT after six months or so of OT. We also felt better about our decision to hold our son back a year before kindergarten. Since, our son is a late Summer birthday, we had some unintended though, welcomed flexibility on this choice. Happy with the results from OT, SSGT, and the ADHD medication. PCIT, I have mixed feelings.
So, what was PCIT like? Grueling, emotional, maddening, and ultimately beneficial. PCIT is predicated on shifting control from the child back to the parent. This was accomplished through the parent studying how to instruct their child to do some activity and hold the child accountable. The child was held accountable through placing them in time out for the tiniest of infractions and then purposely ignoring the child for extended periods of time in order to, essentially, establish who had the alpha dog role in the parent child relationship. For me, this process was not without its challenges.
Allow me to describe my most poignant PCIT memory. After an early session in the PCIT process my wife had with the PCIT therapist and my son, she came out to the waiting area and quite proudly described how she successfully ignored our son for nearly the entire 30 minutes of her session. I was not sure what to make of this rather satisfied attitude or the purpose for engaging in such disregard for our son. I was developing doubts about PCIT in terms of its effects on my son emotionally and psychologically and this seemed to raise my pique a bit. Though, I could not pinpoint anything specific which I could use as an empirical basis to express my reservations. Until now.
My 30 minute session was to directly follow and as I entered the therapy room, I saw my son emotionally spent, with red watery eyes. He leapt into my arms and said, “Daddy,” then started to cry and squeezed hard. My heart broke and papa grizzly bear came out complete with fangs, claws, and a drooling nasty snarl. If I wore earrings, they were coming off and I was charging in to bareknuckle brawl. The blood would flow like President Trump’s rage at former FBI Director James Comey and the “fake news.” Think you get the point.
As the therapist came into the room, it was apparent I was not happy, my son was still upset in my arms, as I tried to calm him so we could complete my PCIT session. Suppressing papa grizzly bear best I could, I inquired as to what happened in my wife’s session to cause my son to be so upset. The therapist proceeded to describe the session plan which, was designed to intentionally provoke my son to violate an instruction so that he could be placed in timeout for the balance of the session with each parent. I expressed my displeasure and unwillingness to cooperate with such a plan being of the opinion that my son’s civil rights were being violated. He was being framed, set up, falsely convicted, and punished. Time to protest on behalf of his civil rights.
The therapist opted to call my wife back for a get on the same page discussion where I questioned them as to what they both were doing to my child. Needless to say, my session that day did not go quite as the PCIT therapist planned and the car ride home was thick with tension between my wife and I. We, and especially I, had a decision to make about PCIT.
My struggle with PCIT stemmed from my (accurate or inaccurate – doesn’t matter!) observation that the therapy was designed to break the spirit of my child for the purpose of making them more pliable and conforming. As a political scientist, I was offended. As a parent, I was feeling protective.
First, the political scientist perspective. Individual freedom is the bedrock of democracy, pliable and conforming citizens are what authoritarian governments and vicious dictators preferred. I sure as hell was not willing to support a therapeutic regimen that effectuated such behavioral proclivities in my child whom I was trying to raise as an enlightened individual capable of living a free life informed by reason and in accordance with liberty, social justice, and equality.
Second, the parent err…papa grizzly bear perspective. Anyone hurts my child, in any manner, shape, or form better be ready for war. Need I elaborate?
Combined, these positions placed me in opposition to PCIT. Nevertheless, I grudgingly remained engaged in the process for no other reason than to keep my wife happy. Happy wife, happy life, as they say. Do note that I have come to empirically verify this proposition as an immutable universal truth. However, I would resist some of the more radical PCIT therapies where I could for the benefit of my child or, so I told myself.
Fortunately, PCIT lasted eight weeks. I think, in part, due to the PCIT therapist and my wife recognizing that I was not a happy or especially willing participant. I did attempt to put on a happy face and participate. Which is to say that the perma-scowl Asperger’s people generally have was, hopefully, less menacing. At least I tried to make it so. Yet, would I be remiss not to acknowledge that there were some benefits.
One benefit of PCIT I wish to mention, is that my wife and I became unified in parenting, eliminating a point of contention in our relationship that enabled us to develop more trust with and in each other. Another benefit was that we became much more critically aware of the parenting techniques, employed by our parents, that we had come to adopt and needed to jettison. Parenting techniques that, in my case, were based entirely on the best available information my parents had concerning my condition.
Which is to say that they and I had no clue, and this fact serves to absolve them of any detrimental effects their best parenting efforts may have had on me during childhood and subsequent interactions. They did the best they could, I love and honor them for doing so. Doesn’t change the fact, that there is much hurt and baggage for them and me to the extent that we have nothing to do with each other, and that includes my siblings. An all too common outcome for late diagnosed Aspies in my and earlier generations, based on my personal research through reading books written by other and academic research on, late diagnosed Aspies.
My hope is that through experiencing PCIT, OT, SSGT, ADHD meds for my son, in addition to obtaining my ASD – Aspie diagnosis, as difficult as it was / continues to be for me personally, my wife, my daughter, and for my son, we will avoid repeating this ignominious outcome. We are going to break the curse of Asperger’s in my family that has ripped apart multiple generations.
I am convinced my father and his father each suffered from ASD – Asperger’s and in both cases, the pattern of ceasing contact between generations is repeated at the loss of any joy, support, and love that may have been experienced through those cross-generational family relationships. That pattern ends with my family. The thousands of dollars spent / invested to date combined with the toll of recommended treatments will be well worth any opportunity cost if the ultimate outcome / return on investment is continuity of relationships between future family generations. That is my hope. That is my determination.