ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)

• Audio
• Recorded Presentation

This presentation/discussion meets the mission of the Autism Society of America: “To improve the lives of all affected by Autism”. We want those who attend to take an active part with us in sharing experiences of what is happening in different States. We must work together to ensure the future of all who are on the Autism Spectrum to be able to be participating members of their community with full rights of all people. We must ensure that all are helped to reach their full potential and have proper and meaningful work and a place to live and to be able to have recreation within their communities.

This will be an informal discussion session primarily for parents, grandparents and/or caregivers of adults with autism. It is also for those who are have individuals who are approaching the transition years from the safety of “entitlement” of school under the I.D.E.A. to the Adult Service world where they are at the mercy of the State government or private pay.

We all need to talk together about where we are and the types of services our loved ones are receiving and what is needed. How do we access these services? How do we make a secure life for our loved one? One of our most frightening thoughts is what is going to become of them when I and my spouse are gone? Will our family (if we have one) be able to take over? How will this impact their lives and those of their children?

What kind of toll has having a child (grandchild) taken on our lives and the lives of our entire family. How has this affected the finances, the mental well-being, marital strain and our other children's lives?

What needs to be done to make sure that they are financially secure? How can we ensure this? What do we do to help make sure they are not a “drain” to the rest of the family? How can we see that they are employed, making money (not affecting their Social Security Income)? How to give them opportunities to enjoy life and have friends who care about them?

Have an advocate whether it is family, friend or ??????? to be there for them when you are not able.

We need to work at having an accepting community around us for them. This should have begun from when they were small. Living in the same community is a help, attending the same places of worship that the rest of the family has been involved in. Build those outlying friendships in clubs that are geared to individuals with disabilities and their peers in the community. Be a part of clubs where they can attend dances, photography clubs, exercise groups, bowling groups, sing in the church choir, etc. We need this community outside of the immediate family and friends.

As our children grow older and become adults, we are also “gathering that accumulation of our youth”. We no longer have our parents and relatives that we have depended upon for so long to help us. We need to find out from other siblings how they will want or be able to interact with this loved one as they have their own families, children and grandchildren. How they will be able to be involved. Make plans with them and how to handle the finances. As all of us become “sandwiched” between our children and our parents, we need to look at how to handle all of these dimensions of life.

We need to watch our health, the health of our spouse, our loved ones with autism and the health of each member of our family. We need to be able to pull on all of our strength, both physical and mental so that we can best advocate for our loved one. Be reasonable in your expectations of yourself, your loved one and your family and friends. No one can do everything. Each of us must do our best to search out and learn of the things that will help our loved ones when we are no longer around to help and guide them.

These are some of the things we all must consider as we as parents, grandparents or care-givers get older as well as our loved ones with disabilities. “The Catching-up Years – Growing Old with Autism” do catch up with all of us.