W is for What Comes Next?

On Day 23 of the A - Z Challenge, W is for What Comes Next?

When I was younger, I never knew anyone who was autistic.  My only perception of autism was from the movie Rainman. Today, it seems that everyone either knows someone or has a family member that is on the spectrum.  

However, when I wonder about what happens in the future, I am very concerned.  My husband and I aren't going to live forever.  In the earlier years, I worried what will happen to David and Michael when we aren't around.  My daughter said to me a couple of years ago when she had started seeing her current boyfriend, "You know Mom, I told Tom that if anything ever happens to you and David, I would take care of David and Michael."  As they are getting older, I think David will be able to be self-sufficient.  I do worry about Michael, but between his brother and sister, he should be OK too.

But what about the others.  Sure, some on the more mild side of the spectrum will go to college and have meaningful careers.  Some will have siblings or close relatives to help out.  However, there are many more that have severe issues, impairing their ability to live on their own.  What will happen to them?  One woman I know has a 13 year old nephew with autism.  He is totally non-verbal and still in diapers.  He is prone to outbursts and is uncontrollable so he was placed in a hospital program a year ago.  They were told he would be toilet trained in 6 months.  He's not. For all intents and purposes, he's institutionalized.

Dateline did a one hour special earlier this month where Kate Snow and the Dateline team followed the journey of two autistic boys and their families.  Currently, developmentally disabled children can stay in the education system until they are 21.  Once they turn 21, they are no longer eligible for state programs.  Dateline reported on the 3 years after the boys turned 21 and how difficult it was for the families to get them into a good program, how the progress these kids made over the years of special education was in danger of being lost, how they families spent every penny they had to try and find constructive outlets to keep the boys from regressing in speech and social progresses.  The eventual outcome for both families was relatively positive, after great personal expense to the families, but frankly I was a little disappointed in the show.  I think it portrayed the exceptions but not the norm that happens to a lot of severely affected kids and their families.  I read that almost 80% of special needs kids ultimately live in broken homes, that one of the parents just can't deal with the situation and they leave.  At one point during the Dateline show, one of the alternatives was to place one of the boys in a program where the other autistic young adults just sat around all day and had no real structure or learning to their day.  They were just put in a room to occupy their time, lost in their own worlds.  

In the next few decades, as the children outlive their parents, I am very concerned as to what is going to happen to those incapable of caring for themselves and what type of care they will be able to get, if any.