I found a great review of the Autism Society National Conference which is worthy of sharing if only to demonstrate that the concern about lifelong services and support is not limited to the families we come in contact with in our own area.
Leigh Attaway Wilcox, the reviewer, and a mother of a child with Aspergers writes:
When questions began, it was quite obvious to me that the main focus of this conference would be on the stark and disturbing lack of services and supports for young adults who are “aging out” of the public school systems and how we can address it.
Exactly. Parents of typically developing children may look forward to the time when they become empty-nesters with some trepidation, but also with the confidence that –if they have done their jobs right–their kids will flourish and prosper as independent adults. When your autistic child reaches adulthood you may very well be faced with the challenge of caring for him for the rest of your life or finding some other individual or facility which will provide necessary levels of support and assistance.
Fortunately, the issue of support services for adults with autism is receiving more attention that it was even a couple of years ago. Just this morning, I read an article about a study being conducted by the University of Utah School of Medicine which aims to identify gaps in supports for adults with autism and better understand why some fare better than others. In my home state, Autism New Jersey just released a document entitled Connecting with Autism: A Blueprint for Lifetime Support which identifies goals and activities that will improve the quality of life for New Jersey’s growing population of adults with autism. This document was created following a series of interviews with families from all over the state.
This is all great news but most it seems to me that these research studies are taking a macro-view of what needs to be done to support adults with autism. None of it is particularly helpful in assisting me as a parent to determine what I need to do right now to prepare my 8-year old for adolescence and adulthood. I do know that we will continue working actively with his school and therapists to increase his independence and his capacity to appropriately engage in and enjoy leisure activities. If I had a blueprint that showed me how to maximize his ability to function independently as he transitions to adulthood, I’d read it thoroughly and often.