What's "wrong" with your daughter?

Program is slowly looking up. We have been working hard and Samantha is finally starting to re-warm to the routine and even some of the new speech activities. One activity involves flash cards that symbolize a syllable (i.e. a sheep means "baa", ghost means "boo"). If she realizes that I am wanting her to do all the work and say the syllable, she hates this activity, but through the magic of high fructose corn syrup rewards and a lot of excitement from me, she is sometimes forgetting that it's work and a few syllables are slipping out.
Another interesting thing I've noticed in the last two days is that she is finally starting to get some strong little muscles in her arms and especially her legs. One activity involves me squeezing VERY firmly up each toe, foot, leg, then fingers, hands and arms. I squeeze so hard that I cannot physically squeeze any harder and she will just wince a tiny bit. This exercise is meant to normalize her perception of sensation (which is obviously underdeveloped) and develop strength in her limbs, so I am excited to see her finally getting stronger.
So, I know that people feel a need to have a name to use to explain why someone like Samantha isn't developing like a typical child. And if you are one of those people, I'll give you my take on that. Samantha was diagnosed as having Pervasive Developmental Disorder- Not Otherwise Specified. As it was explained to us, the "Not Otherwise Specified" (or N.O.S.) means it isn't necessarily tied to a specific disorder such as Autism, it's simply a developmental disorder that is affecting her in more than one way (i.e. not just a speech delay or fine motor delay). However, people (mostly public school special ed) often want to lump her into "the Autism Spectrum". I have seen ADD and ADHD lumped into that spectrum as well, so it's a huge spectrum and in my opinion more damaging than good to have a label that pulls in so many kids that are so different. There's not one course of treatment to help all these children that are so very different from one another. A parent trying to help their child has to sift through so many things that don't apply to their child to finally find the things that do apply. It just seems lazy to me that the medical community doesn't try harder to give more specific diagnoses to kids based on their exact "symptoms".
If Samantha had cancer, noone would say "that little girl is cancer", they would say she "has cancer". That would lead most people to be open minded and ask lots of questions, "well how is the cancer? is it in remission? under control? horribly painful? is she on her death bed?" In other words, "having cancer" can mean many different things for what kind of life that child will lead. Unfortunately people tend to think "that child IS Autistic or Down Syndrome" or whatever the developmental diagnosis might be, instead of "they have autism or a developmental delay", and then asking open minded questions like "how is she progressing? what ways are you choosing to help her? what are her strengths/weaknesses that caused her to receive such a label? Do you agree with the label?"
I don't know why Samantha is behind and I don't know what is ahead for her, but I do know that she is an amazing little person and in my opinion doesn't fit any label perfectly except "UNIQUE" and I love her for that!