What will happen when I die?
Great article on Donald T, the first diagnosed case of autism. The Atlantic: Autism’s First Child
While not the main point of the story, it did include this passage which I think about every day of my life.
The question that haunts every parent of a child with autism is What will happen when I die? This reflects a chronological inevitability: children with autism will grow up to become adults with autism, in most cases ultimately outliving the parents who provided their primary support.
Then what?
It’s a question that has yet to grab society’s attention, as the discussion of autism to date has skewed, understandably, toward its impact on childhood. But the stark fact is that an epidemic among children today means an epidemic among adults tomorrow. The statistics are dramatic: within a decade or so, more than 500,000 children diagnosed with autism will enter adulthood.
Filed under: Adults with Autism, Family
This is a very important subject and I wish more people would open up and talk about it. Myself included.
Because if I’m honest with myself, that’s a very dark and fearful place that I don’t wish to explore. This question is like an annoying demon tapping me on the shoulder, reminding me ever day that I’m alive, but not forever.
The best I can do is try and educate my son to the fullest extent possible and improve his skills to cope with this unforgiving, brutish and fast-paced world. I’ve established a financial trust and testament with powers of attorney, medical care instructions, life insurance and other funding that can help with his future education and financial support.
I’m fortunate that my autistic son has younger siblings that could in theory “watch out for him”, but will they be able to carry that burden? Is that even fair to ask of them? It is probably not fair.
I think it’s important to sit down and really think about this question. Unfortunately, once we’re dead as parents, it is the state that will see to the interests and personal needs of autistic children, unless other arrangements are made in advance. The state is a lousy parent and guide.
Glad you mentioned the trusts, etc. We’ve done that too and quite frankly, that’s the easiest part. I am hopeful that as more and more of these kids become adults and need care, there will be some more opportunities long-term.
If someone dropped a massive amount of money in your lap today, would you do things any different? I keep having these wild ideas about trying to set up some kind of unique living experience for adults with autism, maybe a farm or ranch, etc.