Those wise Buddhists categorize suffering into two kinds: primary suffering and secondary suffering. Primary suffering comes from actual physical sensation: the pain of an injury, hunger, or exhaustion. Secondary suffering is everything else from the big old world of misery: feelings like anger, fear, depression, anxiety and despair that we layer atop unpleasant sensations or events in a finely-woven web of associations, judgments, and explanations.
As parents of kids on the spectrum we suffer in that gap between the delicious, delightful, quirky everyday lives of our inspiring and unusual kids and the crushing abstraction of normal and its kin, appropriate-acceptable-allowed.
For the most part the pain we experience in parenting, as in other things, is this secondary pain that comes from trying to fit into a concept or construct that simply doesn't apply. Or in worrying about a future that we can't readily predict, no matter how many batteries of neuro-psychological tests we agreed to have conducted. Or in pondering what might have been and so finding ourselves waylaid from the present in the the wrenching land of if-only.
With the exception of exhaustion, and the occasional organic ailment, most of our problems at Autism's Edges have been of this latter type, secondary pain, the pain of worry, and rage, and anguish, and embarrassment, and despair. And most of that has come from the misery of trying to match one's lived experience up to some inadequate set of abstractions.
Hopefully someone will loan us all a very sturdy bohdi tree when the next round of challenges come our way . . .