There is a site for nurses in this specialty....
Developmental Disability Nurses Association
I work with adults, but as a supervisor for home health aides to assist them with person care in independent living situations. All I can say is that most of the people I work with do NOT see themselves as sick, and they prefer to be called "consumers" of healthcare, DON'T call them patients!! The pople I work with are not newly disabled, and they do know what works for them, if only people will listen!!
! That is what frustrates them the most I think, is healthcare providers who do not LISTEN to their suggestions. Very hard for them to acknowledge as they age, increasing dependence, even more so than you see in many "normal" seniors.
A lot of psych issues, and occassionally behavior problems, as most of these "kids" have been raised by parents who may not have realized it was best to treat them as noramlly as possible, to set rules and limits on behaviors, which really can escalate when they are adults on their own. I am not criticizing parents in this situation, I truly believe they are doing the best they can.