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

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Thursday, July 13, 2006: 1:30 PM-2:45 PM
550 A-B
#2284- The Catching-up Years Growing Old With Autism: Help For Families
Age catches up with all of us including people with autism. The session is primarily directed toward family members and caregivers. Topics to be covered by people who have experienced the issues will include, but not be limited to issues of physical, mental and spiritual well-being. We shall also discuss issues of employment, finance, guardianship, social security and more, to help feel secure that your loved one is properly taken care of when you are no longer able.

Presenters:Elizabeth (Liz) Roth, Parent, MCASA, Advocate - Liz and John Roth are parents of Andrew, a 25 year old man with autism, youngest of 7 children. She is the ASA National Board Secretary, Co-chair of the ASA National Conference and Co-president of the Montgomery County (MD) Chapter of ASA. She has presented with Audrey Horne at of ASA Conferences on adult issues. She has been involved on Transition and Adult Services for many years to ensure that all people with disabilities receive appropriate services. She talks at meetings and classes about autism including education and adult issues, to improve the lives of all affected by autism.

Audrey I. Horne, Parent, Parent, Advocate - Audrey Horne is an active member of ASA since 1972 and mother of a 37-year-old son with autism. She served on the ASA Board from 1990-2003 and was president, 1997-2001. She chaired the 1997 conference when ASA returned to management of its conferences. Currently an appointee of the Governor of South Carolina to the state adult protection coordinating council.


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.

Things we need to consider:

1. Where will he/she live?

A. At home with family or friends?

B. In a Group Home?

(1) Make sure he/she know they also have a home with you or a family member if this is applicable.

2. What will happen with him/her?

3. Who will be responsible for him/her?

A. Will he/she need a Guardian?

B. Is there a Family Member who knows his/her needs?

4. How will his/her finances be administered?

A. Family

B. Bank

C. Trust Account

5. Will he/she have a job with pay?

A. Will this affect his/her Social Security Income?

B. Who and How will he/she be able to pass some of this money on?

C. What to do about bequests and money left to them by other people?

D. What about Personal Assistance Care?

6. How will you be able to influence all of these issues?

7. Have you prepared him/her to live with other people?

8. Have you prepared him/her to have hobbies or things he/she enjoys?

9. Have you involved him/her in local community life?

A. Church life or other religious experiences?

B. Clubs or recreational activities?

C. Friendships (with disabled peers and typical peers)?

10. Have you prepared him/her for you and your spouse demise?

A. Have you prepared all of your finances for this time?

(1) Have you thought of giving bequests to the ASA and other non-profit organizations?

B. Have you prepared all of your Real Estate for this time?

(1) Have you looked into him/her owning their own home?

(2) Have you looked into a condo or apartment for him/her?

C. Have you thought about Organ Donor and Brain Donor for Research

for you and for him/her?

(1) Brain Tissue from Individuals with Autism and with Family Members is important, both are needed to show the differences. Along with Tissue from Autistic people, control groups are also needed. These are hard issues to grapple with but are very important. They must be discussed ahead of time with your family and loved ones. Time is of the essence when you wish to donate.

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.

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