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What Happens To My Autistic Loved One When I Die?

A potential solution for the autism community.

Key points

  • It takes a village to raise a child, and this is even more true in the autism community.
  • As parents age, they worry about who will take care of their autistic loved one when they are gone.
  • Families can think creatively and act as a community to help give some oversight to the autistic loved one.
  • Families can intentionally trade time or tasks within their community and gain support in turn.

In my 33-year-long journey of being my autistic son Nat's mom, many have asked me what my plan was for him when my husband Ned and I were no longer around. I say something about Nat's wonderful two younger brothers, Max and Ben, and how they would be able to take over Nat's guardianship. But whenever I say this, a part of me just wants to hide under the covers. Max and Ben live in New York City and will probably not move back to Massachusetts, where Nat lives. Their management of Nat's life will, of necessity, be in broad strokes: financial, legal, and general oversight of Nat's group home and day program.

The other thing I say about Nat's life without us is that I plan to become a ghost. That way I can hover around and make sure his world is treating him well. Maybe, like in the Patrick Swayze movie "Ghost," I could learn how to make things move with my ghostly energy and keep Nat safe.

Clearly, there are problems with the Mom-as-ghost approach; I understand that this is not actually an option. And yet, by paying attention to that terrible longing I have to float over Nat and guard him forever, I came up with an idea that actually has legs. I called my new idea G.H.O.S.T., "Group Home Oversight and Support Team," with the idea that members of the disability community would help out with oversight of each others' disabled loved ones by spending a little time with them.

The GHOST concept soon evolved into "General Help, Outreach, and Support Team" because that name can encompass far more people than those in group homes. Rather than just being about those living in group homes, GHOST could focus on caregivers and family members helping each other out in general but especially when it comes to spending a little time with the disabled loved one.

What is GHOST and how would it work?

It didn't take long for my idea to gain support. In particular, Cheryl Ryan Chan, a good friend and a huge community advocate proposed that GHOST become a subgroup within the Community Builders of Massachusetts TimeBank, which she is still in the process of organizing and launching. In Community Builders Time Bank groups, which exist nationwide, members “bank” time by performing tasks for other members, who would then “repay” this by contributing time and tasks of their own to the bank. For example, Jane visits Andrew in his group home and shares a snack with him. Or Jane goes to the group home to help Andrew with a clothing inventory. This means that now Andrew's family member would now have to donate the same amount of time or more to a member of the GHOST Community. GHOST members donate only what they are comfortable with, but the time they give determines the time they get. Some GHOST members might donate time in other ways in order to get another pair of eyes on their loved one, like looking after a sibling or cutting the grass of a time bank member. In other words, members commit time to gain time. If “it takes a village,” then GHOST would provide that village for families.

Potential barriers

There will likely be some barriers to GHOST visits, because of the vulnerability of the people involved. There are government-run service providers in charge of many of the group homes, and so those administrations might object to a GHOST visit, on liability grounds. The best way to deal with that is to meet with representatives from these organizations (the government agencies and the service-providers) and work this out together.

Another concern might be how to prepare the GHOST visitor and the GHOST loved one. The families involved would likely use videos, profile one-pagers, in-person preparation, and social stories, which are wonderful tools to avoid potential pitfalls, likes, and dislikes, triggers, and warning behaviors.

The hope is that because there are no leaders or non-profits or people in charge of GHOST (again, Community Builders Time Bank is a concept that utilizes software to organize and keep track), GHOST is merely an agreement between families. GHOST is an extension of the families, of the autism community. GHOST members must view their role as purely supportive, just like a family member or friend. Because GHOST is only about extending the community of the disabled loved one, this should present no threat to the "powers that be." There should be no problem with the GHOST visitors showing up to a planned visit, any more than if the parent or guardian shows up, as long as the staff understand who they are and what their purpose is. Members should always keep in mind that they are not violating any policies because they are family friends permitted to visit by the individual themselves or the guardians. It is a possibility that some residences would like a guardian sign-off regarding the visitor, which could be a very comfortable solution to potential issues of liability.


GHOST members would provide a profile and/or video about the individual in order to thoroughly inform the GHOST visitor all about the preferences, safety issues, and behaviors of the GHOST loved one. Likewise, the GHOST loved one would need preparation, via introductory video, social story, or a social event like a Community Builders Barbecue. A GHOST guardian/parent/adult sibling would hopefully come to the first visit to facilitate things.

Making GHOST a team effort

GHOST members would always have to respect the residential staff's position as caregiver and possibly build a friendly relationship with them (smiling, introducing themselves, perhaps bringing food for the staff person). In turn, staff would need to be sure that the loved one is there (effective communication with staff is a must). Sometimes residences make mistakes in terms of scheduling and this must be kept in mind. GHOST is intended to be a mutual relationship between its Community Members, with the support of the individual’s residence and the government agencies.

My thinking here is that GHOST would start out as a community-building group of autism families and friends who do things for one another in an organized and fair manner, using the Community Builders of Massachusetts Time Bank software. My dream is that eventually the slant of the group would be older and younger families taking care of one another. If the older families like mine can help mentor the younger families in all things autistic, then the younger families can repay by looking in on autistic loved ones when the older parents no longer can. GHOST would be the way by which all of us who want to be there for our disabled individual in reality, can be there in spirit.

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