Parents of Adults on Spectrum: They Need Support Too!

The world of adult Autism does not only involve individuals who are personally affected by the challenges of Autism.  Autism affects family members throughout their lifespans as well, and in particular parents who have a child on the spectrum; and that means “adult” children too.  A decade ago, The Daniel Jordan Fiddle Foundation was the first organization in the United States to focus exclusively on adults living with Autism and we paved the way for programs, public policy and initiatives that benefit adults on the spectrum. Today, other organizations are now beginning to look at the lifespan of Autism, and the public at large is beginning to realize that Autism is not just a childhood condition.

As the DJF Foundation has always been looking at and directing our efforts to best serving adults who live with the challenges of Autism, we also always have been focused on the health and wellness of the family members who care for and support adult individuals. (See the Health and Wellness section on our website at http://www.djfiddlefoundation.org/health.cfm )

The diversity of the spectrum is reflected in the amount of time, support and care required of the family members of adults on the spectrum.  Some adults can live independently with occasional support of family members, but most adult individuals on the spectrum require significant help from their parents and caregivers as they navigate life in the community.  Many, because of a paucity of residential programs coupled with long-waiting lists for the limited accommodations and financial constraints, live at home with their parents.

So what happens to the parents of adults on the spectrum?  Who thinks about their needs?  Who is supporting them?  Parents of adult children generally have the luxury of retirement, vacationing, down-sizing, starting new lives, transitioning their lives…but parents of adult children on the spectrum, generally cannot do these things. There is really no end in sight in the day-to-day management of the life of an adult child on the spectrum.

We, as a society, need to make ourselves aware that parenting an adult child who lives with Autism is not easy.  We need to listen to parents of adult children on the spectrum and find out what their needs are and how we can support them.  The Daniel Jordan Fiddle Foundation will be leading this discussion in the days and years ahead.

In the meantime, you can help too.  If you know a parent of a young adult or adult on the spectrum, perhaps you can offer some help to them.  If you are a member of a faith community, perhaps your congregation could be supportive by providing meals, rides or whatever your caring community is capable of offering.  In our grassroots communities, we should offer opportunities for parents of adult children to socialize, perhaps at local community centers or YMCAs or JCCs.  Truly, there are many avenues to offer support, and they do not have to be fancy or big efforts—every kindness will make a parent of an adult feel less alone and more valued!  

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