Crucial lessons learned

Within the past three years, while I was still attending grad school, I was certified to give what is known as the “gold-standard” or most commonly recognized and accepted assessment  for its accuracy in assisting in determining an accurate diagnosis of ASD, a psychological assessment knows as the ADOS 2 (Autism Diagnostic Observational Schedule second edition). That, when taken in conjunction with a detailed background and history of the individual (always a parent or guardian with any minor, although they are highly useful at any age, and the client themselves if they have fluent speech) an assessment can be determined. 

While I was learning this assessment, it occurred to me that if I had been tested with this assessment when I was a small child, there is a distinct possibility I might have received a diagnosis of ASD. What would have been likely the most significant determining factor would have been the age at which it was given, and if I was at that point speaking in partial or complete sentences. I can also tell you that I very much would not accurately meet that diagnosis. Not because I have successfully learned coping techniques and other things, but because fundamentally, the key distinction between autism spectrum disorder along with Asperger’s syndrome, is that at their core, these are disorders wherein an individual struggles tremendously to interpret and respond appropriately to social and emotional cues. Depending upon severity, some individuals feel absolutely no desire for social interaction and while this tends to not bother them, it is a frequent source of struggle and shame for the family. While my sister struggled solely with her emotional intelligence, I am essentially the flip side of the coin (because as with most things, there is a genetic component) and my emotional intelligence has always been above average. 

Conversely, I present with many of the sensorial issues that are now a required diagnostic component. I have actually been given a diagnosis within the past five years of ADHD (not that there were symptoms that had not been present in childhood, but in the 80s, it was a diagnosis uncommonly given to females, particularly if they present more with the inattentive form as opposed to the hyperactive form. I have heard people declare they have “adult onset ADHD” which is very much not a thing. It may not have been diagnosed until adulthood, however one of the necessary criteria is that symptoms were present prior to age six.) I also believe that what presents as ADHD is in fact a manifestation of my SPD, and I was entirely unaware of the existence of this disorder prior to that diagnosis, and my knowledge of what the test is in fact measuring (I was administered a computerized test called a QB test, is both activity during the time of testing and response pattern of what is  essentially selecting certain colors and shapes and is not tremendously difficult nor stimulating, at least I didn’t believe it was) and all of those things are potentially present in SPD, but often for different reasons, determined by specific individual brain connections.  If I were to combine my sensorial symptoms with my sister’s social and emotional ones, our two divergent clusters of symptoms would result in a diagnosis of ASD. Knowing that little bit of curious information about myself was not something I was able to explain at that point, but I kept that little tidbit of knowledge tucked away for further investigation.

What I learned from having administered many of these tests (that has been translated into many languages and given around the world, widely accepted as one of the best assessments for ASD currently available): I firmly believe that there are some questions that require additional follow up information. Particularly on some of these finer points, the questions are too vague. For example: as a child or currently; do you have any “unusual collections” or very specific, fixed/limited interests? Well…what exactly is an “unusual collection?” When I was a child, I loved to “collect” caterpillars and create an environment for them and offer them leaves and branches and the majority of the time, I got to watch them build their cocoons, and ultimately hatch as generally nothing tremendously fabulous by my seven year old discrimination, but it was still fun and I like science and I love insects (with a few exceptions), but as a little girl, would that be considered “unusual?” Likely, by most individual’s standards. I also had a rock collection (as in: anything kinda cool looking I saw wherever I was that would fit in my pocket, not so much fancy polished ones. Those were nice too, but in my child’s eyes, I wasn’t terribly particular). These are both collections that are not uncommon amongst individuals who have ASD. So, case in point…that question is not specific enough to make a determination in and of itself. 

Now, if you were to ask an individual with ASD what they did with their rocks, you’re likely to get a look along the lines of “that’s a pretty stupid question” and an answer that is essentially “arranged them according to shape/color/size” or “nothing”. If you asked little Feather what she did with her rocks, well they all had names, they reenacted different safety drills that we had in elementary school. I can’t tell you why, (I could give you an educated guess and if you’re really that interested, I’ll be happy to explain that in person) that isn’t the key difference. The key difference is that I used them for creative play. Individual, creative play is typically lacking in ASD. THAT is why even something considered to be a standard well respected psychometrically sound assessment is in my mind, still in need of some work. But, the good news is, I know what questions to ask and when to ask them. This is not something that to my knowledge exists outside of my own brain. YET.  All things in due time.