I realized when I was writing about getting my kids' ASD diagnoses, that they are both very different on paper than in person. If you just "saw" Joe on paper, -especially a few years ago, you would think he had Classic/Kanner's Autism, whereas in real life, he is much more high-functioning than that. For Grace, the opposite is true: On paper, Grace looks virtually NT, however everyone who works with her agrees that there is "something..."
To me, these discrepancies just reinforce the importance of real face-time in medicine and indeed in any kind of diagnostic procedure. There has been a lot of talk recently about long-distance and "virtual" medical consults, using the Internet and webcams. And while I appreciate that this may be useful in some scenarios; say you have a person with a very rare condition on the West Coast, and the main specialist for this condition is on the East Coast, then you can't expect the patient to fly cross-country to ask a question. It is also probably useful for doctor-doctor consults and remote locations.
But it will never replace face-time and proper clinical practice.
The other thing I was thinking about on the "paper vs person" thing is that paper cannot really define the nuances -and often the nuances are the most important thing to a patient (or the patient's mom). For example, both my kids had "severe sensory Issues" when they were younger. Both actually had much the same sensory issues ...on paper. They both had tactile defensiveness and proprioceptive hyposensitivity (among other things). It baffled me for some time that they could both have the same "things", and yet:
- each one manifested differently in each kid
- the treatment/response was vastly different for each kid. In fact, what worked for one kid was almost guaranteed to set the other off!
That threw me. I knew kids might manifest the same thing a little differently, but my kids are brother and sister, so I expected that if they had the same "thing", the experience would be much the same for each child. Nope. Not in the slightest! That's when I started to realize that this Autism business isn't cut-and-dried at all. I subsequently heard the expression "If you've met one person with Autism, you've met one person with Autism". That is totally true for anything "Autism": Rhetts, CDD, Aspergers, PDD-NOS and Sensory Integration Dysfunction (Disorder? what are they calling it these days?). Actually, -while I'm on the subject, let me take this opportunity (again) to say that the whole diagnostic criteria for ASD/PDD needs to be overhauled bigtime. But even if that happens, there will still be huge differences in kids who have the same diagnosis. I guess if you think about it, we all experience the world differently, so it makes sense that any neurological issues will manifest differently in each person.
And while I am at it (and at the risk of pointing out the obvious), I should mention that the same thing is true for medical diagnoses. Both the paper v. person thing and the fact that two people with the same diagnoses can look very, very different. I have Ehlers-Danlos Syndrome (EDS), Hypermobility subtype, which is usually known as HEDS (or H-EDS, EDS-H, EDS type III). There is a scale used to rate hypermobility in people like me. Actually there are several, but the Beighton Scale (scroll down for pics) is the most common. I rate a full 9 (out of nine) on the Beighton scale (depending on the examiner). So on paper, one might think that I am quite disabled by EDS. I'm not. My primary disability is seizures. Yes, I have joint problems, and I suffer with intermittent pain, dislocations and subluxations. But I am not permanently mobility impaired or in constant pain like many EDS-ers out there.
There are people out there who are not so hypermobile, who have a lot more pain and impairment than I have. I don't know how to explain this, and really I don't think I should try. The explanation "If you've met one person with EDS, you've met one person with EDS" covers it just fine.