Written by Dr. John Carosso
The not-uncommon problem
So, it’s not entirely uncommon that I see a kiddo and find that, prior, he had not been diagnosed with autism, but I find rather clear evidence to the contrary; or vice versa (but more often it’s the former issue). It’s understandable that those situations are very frustrating and confounding for a parent; they don’t know who to believe or where to turn. This problem usually stems around the diagnosis of autism, but sometimes also for Bipolar and ADHD.
Why does this happen?
This issue largely stems from the spectrum being very wide, and sometimes clinicians are looking for the more classic and stereotyped signs of autism that simply are not present. In that respect, a clinician might think that a child cannot have autism if they have good eye contact, or are social, have some friends, show shared enjoyment, are conversational, and don’t show much in the way of self-stimulatory behavior. However, it may be overlooked that the child is social but is socially awkward and, while he has friends, they recognize he is ‘different’. The child may be conversational and not prone toward ‘stims’, but is obsessive, has a mildly unusual speech cadence, sensory issues, and be highly routine-dependent among other things.
What about diagnostic criteria?
You may be thinking, isn’t there straight-forward diagnostic criteria and, either the criteria is met, or it ain’t. In a way that’s true, and there are also specific tests for autism such the ADOS and GARS. However, here’s the problem; even the criteria and tests are open to clinical judgement and a child may, for example, struggle with emotions or social skills, but for lots of different reasons. Most importantly, a child may present well in an office, but struggle in a social setting in the school or community, which is why parent-report is so vital to the diagnostic process. Of course, this is especially true for milder cases (it’s always easy to diagnosis something in a severe form).
Does this apply to other diagnoses as well?
You bet it does. The big question, in milder cases of just about any disorder, is whether the signs and symptoms are severe enough to ‘cross the line’ and be diagnosable. The milder the symptoms, the more clinical judgement comes into play. The more clinical judgement that comes into play, the more of a chance that you’ll get two different opinions. This is also truer for younger children; you’re much more likely to get a false-negative (no diagnosis when criteria are actually met) for a 2.5 year-old than a 7 year-old. Diagnoses that can be confounding in this respect would also include ADHD, Bipolar, and Reactive Attachment Disorder. However, again, the issue of getting countering opinions can be a problem with any given diagnosis.
What to do if you get two different opinions
First, take a deep breath and realize that this discrepancy can occur in any medical or behavioral health condition and, if it’s any consolation, note that it most likely reflects that your child’s symptoms are quite mild; if the symptoms were moderate to severe, there would be no differing of opinions. In that respect, I’ve found that, for some children, the symptoms are evident but very mild and it’s simply a matter of being a ‘borderline’ diagnosis. In those situations, it would be expected that one clinician may believe that the symptoms barely ‘cross the line’ but is diagnosable, while another does not; either way it’s very mild and clearly open to opinion and I clearly explain that issue during the evaluation.
How to address the matter
To resolve, take note of five factors: 1.) the rationale of the practitioner who believes your child does not have the disorder, 2.) the rationale of the clinician who believes your child does have the disorder, 3.) the opinions and comments of other practitioners or professionals who have worked with your child such as speech pathologists or teachers, 4.) what concerns and symptoms that brought you to the clinician in the first place, and 5.) your own belief based on direct and daily observation. As you weigh these factors, take note of which explanation seems to make the most sense, which is most logical and reasonable, and which ‘fits’ best with what you observe and your experience with your child now and over the course of time. Of course, you can always get a third opinion.
What else do I typically recommend?
In these situations, I am usually able to get the parent onboard because I clearly and explicitly explain how I’m coming-up with the diagnosis, and do so in a manner that is very parent-friendly and understandable. However, where there are remaining questions (those “borderline” cases), I begin the child in therapy, either in-office or in-the-home, and I use the eyes of the therapists to help guide the subsequent diagnostic process. In that respect, I maintain regular contact with the therapists to obtain information about what they observe during each session and whether it fits with my diagnosis. Ultimately, we are able to ‘figure it out’ one way or the other. My primary goal, in the meantime (while we ascertain the diagnosis) is to ensure that the child receives the proper level of treatment. I do not let diagnostic uncertainty, on anyone’s part, interfere with the kiddo being connected with therapists and practitioners who can work toward and promote progress. Moreover, I may use a “provisional” diagnosis that reflects evidence of signs and symptoms, but that more evidence needs to be garnered.
Does the type of clinician matter?
Yes, it matters. Practitioners who are specifically trained to make such a diagnosis would include a Licensed Child Psychologist, and/or a Board Certified Child Psychiatrist. These two types of professionals are specifically trained, more than other types, to diagnosis behavioral health conditions.
Hope that helps
Getting two different opinions can be quite frustrating and exacerbating. If you encounter such a difficulty, I hope this posts helps in guiding you through the process to a definitive resolution. Please feel free to comment or question at firstname.lastname@example.org, especially if you’ve experienced something similar.