Perhaps there should be regional specialists in atypical autism who not only coordinate care, but put the parents in contact with each other. The key to getting someone to help manage your case is asking. You may have to ask rather insistently, particularly if you're dealing with an HMO or managed-care group. Be sure to remind bureaucrats that well-managed cases cost less in the long run, because patients improve more, and do so quicker. Good case management now will mean less need for expensive adult services later on.
Referrals are another hot-button issue.
Obtaining speech therapy, occupational therapy, physical therapy, allergy testing, metabolic screening, EEGs and EKGs, and other specialist services is often more of a headache than it should be. Psychiatric medications are a specialty in and of themselves. You may have to fight to put someone experienced at the helm of your personal treatment plan. It took two years to even get someone to listen. I was dismissed time and again as a nervous mother.