At a recent autism conference in New Jersey, a young woman stood to ask a panel of experts what she, as sibling to an autistic brother can do to help him. The answer didn’t come from any of the panelists, but we’re offering the Case for Continuity as the best solution.
Continuity simply means family planning to deal with a child’s autism through multiple generations and family links. In plain speak, it’s not just parents charged with the responsibility of caring for an autistic child, but the child’s brothers, sisters, aunts, uncles and cousins, nieces and nephews. Effectively, the Case for Continuity is a whole-family approach.
There is in the world of autism charities the fantasy notion of trusts taking care of an autistic individual when the parents are gone. While this is a nice concept, in reality, raising that child costs over $2.4 million on average in the United States, and more in some locations like New Jersey. The average family has little money left over to contribute towards a special needs trust during the parent’s lifetime. So where does this trust come from? Essentially, it doesn’t.
We also have to consider the possibility that the parents themselves may require considerable care in their elder years, particularly if Alzheimer’s develops in one or both. Funds will be extremely limited and money for the autistic family member will diminish or evaporate as the parents age.
If the family includes siblings and cousins, it’s important to build a multi-generational plan to help the autistic family member – the Continuity. Brothers, sisters, cousins and their kids need to be taught early to care for the autistic family member, and to put that person foremost in their daily lives. While we don’t suggest a life exclusively dedicated to the autistic relative, we do believe it’s important that family not leave that individual in horrid isolation or without resources.
We have to consider the sea change in people’s lives today, and presume they’ll get even busier as time progresses. Modern technology, it seems, was supposed to free us up for more leisure, but the information age has created 20 hour work days, seven days a week for a large segment of the population. Thus it’s critical for parents and relatives of autistic people to train our next generations to care for them. It’s critical they understand the financial obligation from an early age, so that as they grow older, they don’t abandon the autistic family member.
What happens in a family without siblings and cousins? Well this is where continuity of care has problems unless the parents are independently wealthy. If they’re not, the autistic child will eventually become a ward of the government. In cases where their autism is mild, this may not be too difficult to deal with, but where the autism is severe, it can be very troubling for them, and lonely. Families with limited members may need to do fundraising events while the autistic individual is young, to set up special interest trusts. This is where autism organizations can be extremely helpful, though few think of this option.
Government is funding better, more considerate care and housing for autism today, and much of it very affordable. However, institutionalized care for the severely autistic is still extremely expensive. The quality of that care will depend not only on the current generation and parents, but on successive generations.
Whether institutionalized or living independent happy lives, autistic people need one thing few organizations helping them ever speak of — family. The Case for Continuity is about teaching family autism acceptance, and to commit to the entire family including the autistic family-member. It means not only financial support, but inviting them to dinner for holidays, and visiting them, taking them to dinner, or out to the movies, or just including them routinely in family events. It’s a family commitment to inclusion, and the generational denial of exclusion. It’s teaching family to have a heart; to care; to share and to love.