Grandparents and Children with ASD

It is not only the immediate family that feels the impact when a child is diagnosed with an autism spectrum disorder. Extended family, including grandparents, must cope with this new reality as well. Whether a grandparent was the first person to realize something was amiss with a grandchild, or was the last to find out about a diagnosis, many come to play a crucial part in the lives of children with ASD and their families. Share your thoughts, experiences, and questions here.

To read Part 1 of our IAN Research Report on Grandparents of Children with ASD, see: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010

It is true that the entire family of children/adults with ASD feel the impact. I have 4 adult children, most are married but I'm also raising my adopted 17 yr old grandson on my own who has ASD. He is rather low functioning and takes up most of my time. I am saddened that I cannot spend more time with my other children, grandchildren as well as my own brothers and sisters who are now getting on in life. It's just not feasable. AT the same time I made a commitment to my 17 yr. old son and want to do the best by him. His mother, my daughter is schizophrenic and I often feel pulled in all directions.

Dutch, thank you so much for your post. You have illustrated so perfectly how autism, and other challenges, effect multiple generations in a family. I am so sorry to hear of the heavy load you carry, and hope you are able to get some respite and some support. It is no easy path to walk, but it sounds like you are walking it heroically. Still - even heroes need support.

One terrific organization you might want to look into is the Grandparent Autism Network: http://ganinfo.org/

Some chapters of the Autism Society of America have support groups for parents (and grandparents) of adults with autism, as well. You could inquire at your local chapter: http://www.autism-society.org/site/PageServer?pagename=community_chapters

I am also raising a grandchild with ASD and it is a challenge. I have had him since birth so we have learned this road together. I now have a 4 yr old grandson that is starting to display some of the same behaviors. He is going for testing next month. It touches the entire family.

Hi travisnana, and welcome to IAN.

You are so right that having a child on the autism spectrum impacts the entire family. I hope your family is getting the support you need, as you walk this difficult road. Some of the organizations which can help are:

Autism Speaks: http://www.autismspeaks.org

Autism Society of America: http://www.autism-society.org

Grandparent Autism Network: http://www.ganinfo.org

I also wanted to mention this video -- which just went up yesterday!-- by a grandmother in Long Island who is speaking about her work advocating for families with a child on the spectrum: http://www.tos50.com/video/grandparents-helping-autistic-grandchildren

If you have legal rights as parent/decision-maker for your grandchild, by the way, you are eligible to join IAN Research, our nation's largest online autism research project. We would love to have you! See: http://www.ianresearch.org.