Autistic and Overlooked

[mrsjerome]

Autistic and Overlooked
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/01/AR2008040102199.html

[AKF]

I've lately spent some time wondering about what happpens to Keith when DH and I can no longer care for him. I have the same question as the mom in the story. Do I wait until I really can't do it, or do we go ahead and place him somewhere sooner. I know (or at least hope!) this is a long way off, but it crosses my mind from time to time, most often when he is in the middle of some sort of melt-down. That's when I worry most about the future.

[Mother's Heart]

the last paragraph:
""
Still, for us, transportation is a minor issue. It's the big picture -- who will love and care for Randy after his father and I are gone -- that keeps me up at night. ""

Yes, that question's what haunts me.

here is a link to a book that can start you thinking.

http://ecx.images-amazon.com/images/I/51ESJYWV2QL._BO2,204,203,200_PIsitb-dp-500-arrow,TopRight,45,-64_OU01_AA240_SH20_.jpg

[Isabelle]

i hope to lived to 110 and my son to die before i do. because to be sent again to be cared for by the state means to be on large amounts of psychiatric drugs to keep him quiet, rendered undemanding and sleeping for 18/20 hrs a day and when awake, he would be painful stiff like suffering from parkisonism or limbs shaking like suffering from cerebral palsy, wondering what happened to his body. crazy with pain and confusion bangs, punches his head in terror. strangers are not comforting but tormenting him, thinking is all autistic behaviour. finally totally crazy and psychotic, he would need to be confined in a small room kept in restraints so he won't attack other people or attempt to gouge his eyes and teeth until his death.

[mrsjerome]

Some of the children of today when they grow up will not be afforded the resources that are currently set aside for them by law. and as of now the resources for the adults are so much more limited than for a child. If we have 1 in 150 and that trend continues there will be some on the spectrum that will not be able to care for themselves. If their parents cannot care for them there will be huge waiting lists for any kind of respite care for them.
In the future this can be a tremendous problem.
My son is an adult and his county case worker told me there is at present a 5 year waiting list to get the services that he is receiving. So if you look another 10 plus years down the road just what would the waiting list for services be then. I sure hope by then a solution to what could be a big problem is taken care of.