I'm a parent of an autistic adult. My son, Nathaniel, was diagnosed around 3 years of age (he's now in his 30's), but as I look over some family movies (see March 30, 2011 post) I can see that he displayed many of the 10 signs of autism well before then.

His mother and I had only one thing in mind. What do we do?? In the early 80's there was little we could find about autism (no internet - what a lifesaver now!). We had his immediate needs to worry about. Was there a cure? Did he require medication? Childhood education had not yet come to mind. But with time, we needed to find out what resources were available around us.

Planning usually comes late for parents with autistic kids. We (well his mother and I) worried about his immediate needs and not the future. When Nathaniel reached 18, life as an adult posed many questions.

I hope that this can be a place where parents with autistic adults and children can communicate with those of us who have dealt with autistic adults. Yes, there are books and magazine articles about what to expect, and legal advice, but I have yet to find a place where experienced parents can share these experiences, give advice, and help parents of young children cope with the future of their child.

Aug 5, 2011

When It Comes To Full Time Placement

Wow, another long time between posts. I must do better.

I have a friend that has come to the point where she can no longer care for her child. This is not a particularly old child and would not be considered as an adult. However, my friend is experiencing all the pain and frustration that any parent would when deciding to look for outside help in living arrangements. So she says that she has no idea where to start

My suggestion was to first call the local or state Autism Society. They can be very helpful in locating possible institutions capable of caring for the child on a long term and full time basis. I hesitate to use the work institution because it has a negative connotation. Many states have private non-profit organizations that they use for placement. My son is placed with a very good organization in Maryland and oversees many homes that care for adults, with full time supervision (live-ins) doing the cleaning, cooking, and in the case of my son, personnel care like showering.

I suggested to my friend that she must decide on whether she wants her child to be close enough to visit often or at a distance. This is a hard decision as there may be few local care facilities. Again, we were lucky with Nathaniel as there were two good organizations close by. We did have a choice on two long distance facilities (about 2 hours and 5 hours away}, but we did not want that distance and we were pleased with the care provided locally. She also needs to find out what that care will cost. Maryland provides for everything (thus it's hard to place an adult!), including a personal stipend for miscellaneous expenses like clothing and even airfare to visit us.

Finally, finding out who works for the organization is key to both your adult and for your own piece of mind. Shelley and I interviewed the care provider when we started - that's almost unheard of today and in most organizations. Still, meet with the care providers that are employed. This is your child and you want what is best for him/her.

It is a fact of life that this kind of decision is best made early in the adult's life. There will often be a waiting list and the sooner you are in the system, the better. This decision will not come easy


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