As a parent, there is no more mind-numbing activity than the next doctor’s appointment.
During the course of a year, I drive my son to at least ten doctors’ appointments. Each appointment takes about two hours round trip and with the appointment itself between forty-five minutes to an hour and a half. That doesn’t even include the time in the waiting room or in the examination room. It often seems that while I am sitting in traffic going to one appointment, I am on the phone calling to make another appointment with a different provider. (Note: I always use my Bluetooth connection when operating my cellphone while in the car.)
That is a lot of time spent sitting in car seats, office chairs or examination room chairs.
However, every three years, I get to add yet another appointment to my yearly semi-annual follow up appointments. Every three years, I need to get my son re-diagnosed as having an Autism Spectrum Disorder.
Friends with their own children often stare at me in disbelief when I say that I have to get my son re-evaluated and re-diagnosed as having autism. They will ask me, “ I didn’t know that there was a cure for autism or when did he get cured?” “Has he progressed that far or gained that much in skills?”
I give my standard medical-laden response. “Well, he doing quite well; his expressive language output and his ability to receptively process language both have expanded. Behaviorally, he is more adaptable each day, however, we still have the occasional meltdown and there are both good days and not so good days. Medically, he has been quite stable, which we attribute to the various medical treatments and therapies we have been doing. Unfortunately, he still needs a device to talk; still has the core deficiencies that define autism.”
I continue with my usual slight sigh, “I am not sure why I need to constantly prove that he still has autism or that he needs these services, but such is life when dealing with insurance companies, school districts and government funded services.”
One of the more humorous trips for a re-diagnosis was just last year. My son and I travel into the city so that a speech therapist and psychologist can both assess whether he qualifies for some government funded benefits. We enter the office and the receptionist looks at the two of us and asks my son his name. I prompt my son to use his device and he answers, pressing the proper button. The receptionist then asks if I am his father. I was half-tempted to grab my son’s device and press the “yes” button. However, I answered verbally and she continued that we would first meet with the speech pathologist.
After a seat in the waiting room for about fifteen minutes, we meet the speech therapist who attempts to begin a conversation with my son. We enter his office and seat across a desk from him. He asks my son is name. Again, I prompt him to use his device, which he does. The speech therapist then begins to discuss with me the proposed length of this evaluation, which is one hour.
I take a minute to absorb the length of this evaluation. One hour to see my son not say a word and use his device seems absurd, but OK, let’s do this.
The speech therapist reading my non-verbal look of perplexation says, “Well, to be honest, I am done with my evaluation. It is clear in the few minutes that I have observed your son that he suffers from the core deficits in autism and that his communication and social communication skills are impaired.”
We spend the next twenty minutes discussing my life’s journey that has led me to where I am. The speech pathologist thanks us for coming in and takes us back to the waiting room where we sit for an hour waiting for our next appointment.
Finally, the psychologist appears and leads us back to his office. My son and I sit across his desk from him. Again, we are told this will be an hour-long evaluation and that I am only to be an observer because for testing purposes he does not want or need my assistance. I internally grin and think well this is going to be a “shit show”.
The psychologist minimally engages my son and the “testing” begins. For the next thirty minutes, the psychologist attempts to have my son pick out parts of a picture that comprise some or all of a card he is given. After thirty minutes of “nothing”, and when I say nothing, I mean my son did not point to any part of the picture.
Frustrated with the lack of answers, the psychologist asks if I can make him answer. I respond, “I am just an observer, I don’t want to interfere or skew your assessment.” After twenty more minutes, with my son’s screams hitting notes that only dogs can hear, this evaluation is mercifully brought to an end.
The psychologist then provides me with thumbnail sketch of his impression. I was not able to evaluate your son appropriately, he appears to have severe behavioral challenges that impede my evaluation and that you, the parent, did not assist in the evaluation.
I responded, “well, you said not to assist, so I didn’t. If that wasn’t the test parameters, then you should not have said what you said. I am not sure what you actually expected out of me or my son.”
He retorted, “Your attitude will be reflected in my report.”
I answered, “what does my attitude have to do with my son’s disability?”
“Nothing, he responded, “I am just frustrated.”
We then discuss how he is frustrated with this work and wishes he was practicing in a different format and location.
Here we have two evaluations from the same practice from two different disciplines and approaches. I am not saying one is better than the other, but I am saying that having a proper evaluation is not only important; it is essential.
I am fortunate that I have a wife who is in the medical field and knows how to navigate health care providers, their gatekeepers and the insurance companies they are in-network. However, many psychologists and psychiatrists are not in-network providers and locating a mental health professional with experience in diagnosing autism is not easy.
The takeaway from the foregoing is this -“Be sure that any evaluation you attempt to have completed for your child is completed by a highly-qualified, experienced and skilled provider, who takes the time to properly evaluate your child using gold standard assessments.