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Chasing Ghosts in the Haunting Future of Autism

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With today being Halloween it seemed fitting to discuss a topic I find frightening, scary, and one  that fills many like myself with dread. I receive daily autism insights and information from Feedspot (I’m including a link at the end) and often read blogs from other parents. It has been a wealth of information from a variety of perspectives. Recently a blog from a parent with an adult on the spectrum caught my eye and made my blood run cold.

This mom was talking about the abyss of autism services for adults. For those of us with children who were diagnosed back in the 90’s, there is a large group now encountering a dark scenario and future. Even more chilling is the fact that their caregivers, myself included, will soon be aging out of their ability to care for their loved ones. What happens to them after we are gone?

The thought of not being there for Jonathan is one that is almost unfathomable, yet I know the day will come. Planning for his future and the day when I will no longer be his advocate or his caregiver, means preparing for the day when I leave this earth. Just the thought is a frightening reminder of what will one day be a reality.

Mortality through the eyes of someone who has spent most of their life caring for autism, is a haunting actuality. My biggest fears are how will Jonathan cope with or understand why I am no longer there? Will he feel abandoned, frightened and confused? While I know he will have the love and support of his sisters, will I become a ghost of a memory?  Once again I’m back to square one trying to determine a future that remains a mystery. It rivals being in a dark haunted house, going from room to room, barely able to see what’s ahead or able to prepare for what jumps out at you. A web of uncertainty and unknowns as you feel your way, clearing out the cobwebs in hopes of finding the light of day. Ghosts you cannot see yet you know they exist.

Yet even as I make my way, I know there are those who have gone before me and have prepared for what’s to come. As I join them, it is my hope that while I am still in a position to support my son, learn from others, and push for more, that I leave this world of autism better than I found it. So those that follow me won’t be haunted by as many ghosts as they make their way. Fear is replaced with opportunities and hope. That transitions from child to adult to elderly provide support and services every step of the way. So caregivers can spend their time living a life of love and joy, instead of worrying about uncertain futures. Because so much of our life with autism has been about dealing with uncertainty.

It would be nice to leave this world knowing the ghosts have all vanished.

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