Planet Autism
September 27, 2003 8:19 AM   Subscribe

Planet Autism
"Last summer, a man in California shot his 27-year-old autistic son to death and then shot himself. I understand why." (warning - Salon link)
posted by Irontom (16 comments total) 1 user marked this as a favorite
Great link. Thanks, Irontom.
posted by Jairus at 8:45 AM on September 27, 2003

Ditto - an excellent, moving article.
posted by adrianhon at 9:01 AM on September 27, 2003

Last night Ben was awake until 1:30am. I was dead tired by 10pm, but sleep for me was not an option.

Had to blockade the bedroom closet because he kept throwing everything on the floor and trying to climb the shelves.

Had to hide the loaf of bread in the linen closet after he scaled the kitchen counters and cupboards to get at it. The last time I let him actually get the loaf, ten minutes later my bed was covered with slices of bread arranged in neat rows.

Tried to hide the salt, but he found it. He can find pretty much anything, and he has gotten too big and strong for anything short of an armored safe to keep him out when he is determined. He once demolished a paneled cabinet because there was a lock affixed to the door and his vcr was inside. That took less than ten minutes while his mom was in the shower, and she came out into the living room to find splintered wood scattered around the room and Ben sitting happily watching a tape (or more accurately, the same three seconds of a tape over and over and over again). So last night he found the salt, and as a result a) I no longer have any salt to cook or season with, and b) my couch and living room carpet were well-salted.

He has no interest in potty training, but at least these days he is good about putting his dirty pull-ups in the trash and getting a clean one; it's only once or twice a week now that, like last night, I stumble over a soiled diaper sitting on the floor somewhere.

By midnight I have unplugged all of the electronics and started unscrewing light bulbs. Dead tired, my temper is wearing thin and he is still bouncing around the apartment like a tasmanian devil. By 1am he is finally showing signs of slowing down. There is absolutely nothing I can do or say to help matters, other than to lock away, barricade, unplug, and generally make completely unavailable anything that might encourage him to stay awake. There is no threat, no discipline, no punishment that will have any effect because the connection is to abstract for him to understand.

He's my son. I love him dearly with every fiber of my being. The look of joy in his eyes when we visit the Magic Kingdom is priceless, as is his infectious laugh when his belly is being tickled. But at 1:00 in the morning as I stare at the wreckage of my apartment and want nothing but to well, let's just say I don't quite feel the love.
posted by Lokheed at 9:14 AM on September 27, 2003 [1 favorite]

Lokheed.....what can I say? Like the Salon article, your story brings tears to my eyes, and I marvel at the inner reserve parents like you are able to tap into.

The next time I'm tempted to gripe because my job sucks or my car won't start on the first try, I will definitely stop and count my blessings. You don't know me from Adam, and I have no helpful advice for you, but I'm sending you a hug {{{{{{{}}}}}}} and I hope that you continue to find the strength and stamina necessary to cope with your situation.
posted by Oriole Adams at 9:29 AM on September 27, 2003

In all fairness, I don't have it nearly as bad as the author of that article. Ben is nine, going on ten, and it has been a couple of years since I have had to clean up any volume of feces or vomit. Granted, he did climb up on the kitchen counter a few weeks ago and pee on the kitchen floor, but at least it was a tile floor and easy to clean up. For the most part Ben is very happy and affectionate. I have spent enough time around other autistic kids to know just how very fortunate we are.

But of course, that's all relative isn't it?
posted by Lokheed at 9:39 AM on September 27, 2003

I hope I am never tested like this.

I do not believe I have the strength that would be required to pass even the level of trial Lokheed describes, much less the ones the author talked about.

And I already have two kids.
posted by Irontom at 9:44 AM on September 27, 2003

Wow... just.. wow.

When I think of how much of an effort is just keeping my own life together.. I just can't even fathom something like this on top of that. People who can do that have my deepest admiration.
posted by Space Coyote at 10:43 AM on September 27, 2003

Full disclosure: I have a friend who is a Son-Rise Child Facilitator. No they are not Christian, just an unfortunate choice of name.

This week I volunteered to work at a talk by Raun Kaufman from the Son-Rise institute (please forgive the over-use of (TM) and (R), which makes the site look a bit pyramid sales-y, after all they are yanks and probably don't know any better), he was diagnosed as severely autistic at age three. His story is documented in the book written by his father ('Son Rise: The miracle continues'). Now I sound like a god-damn salesfreak.

I watched the talk, and read the comments of parents and professionals on the comments sheet. The most common praise was; 'It gave me hope'.

Basically, the message was that children on the autistic spectrum are often using very intelligent and sophisticated techniques to make sense of the world as they experience it. Autistic and self-stimulating behaviour is a coping mechanism, not something to be stamped out. The institute advocates 'joining' the child in their 'ism' to build a dialogue. Nothing can be done until a dialogue exists on the childs' own terms. This takes alot of time and energy, ideally 8 hours a day of 'assisted play' in a purpose built play room. Celebrate (loud and animatedly) successes, but not mistakes or bad behaviour which require a subtle, quiet but firm approach.

Oh, and diet. It is likely that an autistic child has an intolerance to gluten and casien. These are addictive, if you suffer from the particular bowel disorder that is common amongst autistic spectrum children. Addictive as in, like heroin. Great improvements can be made by simply changing diet.

This program, which was shown recently on BBC2, featured a woman who has 6 children, four boys and two girls. The boys are all on the autistic spectrum somewhere.
Narated by 14 year old Luke, who has also written two books about autism.
It was amazing.

Lokheed, take heart, autism does not have to be a life sentence.
posted by asok at 11:17 AM on September 27, 2003

> autism does not have to be a life sentence

While that's a very encouraging thing to say, it strikes me as similar to saying that "homosexuality does not have to be a life sentence." Having thought, researched, and written about autism, it's clear to me that while vaccines, diet, and other environmental factors may play some "triggering" role in autism, most autistic people are born that way. In most cases, I believe, it's in the genes -- which is borne out more every day by genetic research, such as the work of Eric Courchesne at UC San Diego. Thus, I believe autistic people will be autistic all their lives.

Having said that, it's crucial -- particularly because it's a "life sentence" -- that autistic people and the parents of autistic kids get the help, support, information, and funding they need to do the kinds of therapies and behavioral interventions that will help make their lives better. Temple Grandin is a great example of someone who has used the particular gifts of her autistic brain to do better in her field than a non-autistic person might have done.
posted by digaman at 11:36 AM on September 27, 2003

This woman has written a number of Epinions essays on the subject of raising her high-funcitoning austistic child by herself. You might have to wade through her review list to find them all as she writes quite a bit on a number of subjects.
posted by scarabic at 12:01 PM on September 27, 2003

Point taken digaman, the phrase is nicked from the Son-Rise people. I think the message is supposed to be something along the lines of; coping with autism need not be a chore for everyone for ever. You can hope for your child, as anything is possible.
As you point out, using the particular characteristics of the autistic brain can be an advantage. In the program 'My Family and Autism', Luke Jackson explains that it is easier for him to talk to a room full of people, or a television camera, than to hold a 'normal' one on one conversation.
posted by asok at 12:05 PM on September 27, 2003

Wow, Luke Jackson seems like a great kid. As Luke said in that article:

> always remember that "different is cool!"

posted by digaman at 12:13 PM on September 27, 2003

Great link. thoughts and prayers are with you and the other parents who have so much more strength and stamina than I believe I have.
posted by dejah420 at 3:41 PM on September 27, 2003

My one child is often more than enough - I can't imagine having an autistic child. Lokheed, the words I want to say to you simply don't seem enough to me: I'm proud and amazed that people such as yourself exist; your patience and perseverance is wonderful to see.
posted by ashbury at 8:47 PM on September 27, 2003

If the guinea pig is your kid she may demonstrate a promising response. Increased verbalization. Improved eye contact. Focused participation within some innocuous family activity. Then cruelly, predictably, her confused wiring, a permanent hard drive virus directs her biochemistry to countermand the positive results of the new substance, to develop -- in effect, immunity to it. And so in time this latest, exciting remedy becomes no more than an asterisk in the snake oil file.

Asok, I think just from reading all the various posts/responses in this thread there isn't a magic bullet. But it's nice to know there's at least techniques people can use. Lokheed, you have my utmost respect. Do you have a spouse to support you or are you doing all this child-rearing on your own?
posted by Happydaz at 11:27 PM on September 27, 2003

His mother and I divorced nearly seven years ago, but whatever our differences with each other we still see eye to eye on things involving Ben. As a general rule he is with his mom during the week and with me on the weekends. I tend to see him at least one evening during the week, and starting next week I will be putting him on the school bus each morning so that his mom can leave for work on time. So basically we are each pretty much on our own on any particular day, but we more or less alternate days so that we each get time away.
posted by Lokheed at 6:11 AM on September 28, 2003

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