Tuesday, September 21, 2010

Old Man Autism

I have some news that is going to come as something of a shock, but it must be said.  My child with autism is more than likely going to become an adult with autism.  For precisely 99.679% of the time, I manage to push this thought out of my brain.  But this week, it's been coming at me relentlessly.

First there was 20-year old Chad on World of Jenks.  Then my sister called me to tell me that she'd heard something on NPR about special needs trusts.  Speaking of 99.679% of the time, that would also represent the portion of the total calls that I get from my sister when she's telling me about something that she heard on NPR.

Then there was this article in the Atlantic about Donald Triplett, the first person ever diagnosed with autism who is still alive and stimming kicking at 77 years old.  The article's teaser ponders what will happen to the approximately 500,000 autistic children that will become adults in this decade alone, and ends with this:  "(Donald's) long, happy, surprising life may hold some answers."  Tell me.  Tell. me. the. answer.  Tellmetellmetellmetellmetellmetellme. 

I'll spare you the lengthy read to get to the Holy Grail.  Here's your answer:  Donald is very high-functioning, perhaps even Aspergers, his parents had a pile of old money, and he lives in Forest, Mississippi, where centuries of inbreeding have created such a population of nutters that he's practically running the place.  Hey, I didn't say that...one of the local townspeople did:
“In a small southern town, if you’re odd and poor, you’re crazy; if you’re odd and rich, all you are is a little eccentric.”
And if you're a poor, odd Yankee?

17 comments:

  1. That question sounds like the beginning to a really great riddle - what's the answer?
    You're right that Audrey is going to be an adult with Autism someday, but she's also going to be a fabulous adult with the best one-liners around. And she definitely won't be drawing any pictures of trucks...

    ReplyDelete
  2. You have put into words exactly what I have been feeling this week. I, too, manage to put it out of my mind most of the time that David will sometime be an adult with autism and I, too, read the article about Donald Triplett. I guess we can take comfort that there will be strength in numbers--David will be another poor odd yankee.

    ReplyDelete
  3. Be happy you are able to put this out of your head 99.679% of the time. As my son gets older I'm lucky if I'm even hitting 94.254%. My son is not particularly high functioning and, although geographically in the South, Florida is quite different than Mississippi. So Mr. Tippett's experience probably isn't illustrative for us. All I can do is prepare him as best I can and take cold comfort in the fact that my wife will probably outlive me by at least 40 years. Thanks to life insurance, diabetes, and bad genes, I will be living it up in Hell comforted in the knowledge that my son is still in good hands and my wife is filthy rich.

    ReplyDelete
  4. I may be delusional, but I'm hopeful my daughter will be in the .00000000034 percent (or whatever it works out) that won't be an autistic adult. I'm probably delusional though. Nevertheless, my daughter is smart, she's getting more social, and she's developed the ability to have empathy. I'm very hopeful about her future even is she isn't on the spectrum. Unfortunately, she probably won't have the money to be considered eccentric. Unless she makes her own fortune.

    ReplyDelete
  5. Technically, BB's already there: he's 18. If I start calling him Lord BB of Stim, heir to the Duke of Flapping, do you think he'll pass as an eccentric English aristocrat?

    ReplyDelete
  6. I read the article- interesting but I agree- okay he's doing well as an adult because his family had money

    we're screwed....

    ReplyDelete
  7. Yeah. The money.

    That's how Helen Keller broke through too (I know, not autism, but still).

    Sigh...

    ReplyDelete
  8. Arming ourselves with as much info as possible is the answer I guess, and then preparing our child (if they are high functioning enough to be prepared). My daughter has a terrible case of sensory processing disorder, which is often associated with Autism. She had a lot of autistic-like behaviors, but we are fortunate of course that we were able to intervene, had the time and money, and could get it done. I feel terrible for those with more severe illness and lack of funds/opportunities. All I can offer here are some websites and info that gave us ideas to intervene on our own before we were able to pay for outside help. I hope these sites help others:
    www.spdfoundation.net - info and support
    www.brainbalancecenters.com - info and education opportunities

    ReplyDelete
  9. Nice to see that the locals in Mississippi agree with the age old practice of inbreeding. I hate when they get their panties in a twist when one of us "northerners' says something like that. Hey, there's even some of that there inbreedin' going on in them hills of eastern PA! Yee Haw!
    My son had a school mate (he even lives down the road from us) that was diagnosed with autism at the age of 18. Still a functioning, living normal life guy, drives a Chevy pickup.
    Try not to think too far into the future. Take one day at a time. You'll drive yourself insane!

    ReplyDelete
  10. I confess I'm one of those who try not to think too far into the future. Processing that Boo will someday go to school and have to deal with everything (read: everyone) that entails is enough to nearly incapacitate me, never mind his thankfully-not-yet-impending adulthood.

    I'm attempting to handle it by concentrating on laying enough of a foundation both developmentally and financially that Boo will be a happy, well-adjusted, autistic adult. I don't know if we'll suceed, but no parent ever does. Know, that is.

    ReplyDelete
  11. i think about it sometimes and it scares me...so i don't think about it.

    ReplyDelete
  12. Despite being poorer and geographically-challenged your daughter will reap the benefits of a more-level playing field by being born 7 decades later into a world with EI, IDEA with medicine and technology not dreamed-of when fortunate Donald was born.

    ReplyDelete
  13. My mind tends to fast farward the tape a lot and I don't always like what I see. I wish I could count on a family member stepping in but just over the course of 12 years those who said, "I'll take him" have either changed their plans or are dead.

    There will be an estate planning meeting and a guardian will be appointed but there are no guarantees, even with legal documentation. Life happens.

    So for now it's all about getting Dan as close to independence as possible. Work, Work, Work!! That reminds me, I need to call his school and tell them to drop the math and work on doing laundry. :D

    ReplyDelete
  14. I can't speak to the Autism part of this, but.

    I don't let myself look very far into the future with my son. There will likely be more medical problems. He could lose what little hearing he has left. Neither could happen.

    I can't picture him as an adult. Too many variables. So I don't.

    ReplyDelete
  15. I hear from a lot of people that their adult is OK. I also know of a lot of adults that don't do well, including our son. The state is paying $100,000 a year for his care and then we and insurance kick in large shares too. And he is still failing. Wonder what the stats are on suicide and autism.

    ReplyDelete
  16. I know what you mean about pushing things out of your mind. I think you'd like to read my post titled "Re-thinking Our Future" on my blog. It's in the July archive.

    ReplyDelete
  17. I hear you
    It brings a lump to my throat
    But my worry is not about R adult and autistic
    Somehow that does not worry me
    I worry more about me no longer alive and no one knowing how special wonderful and magic he is and no one nourishing his sensitive soul

    ReplyDelete