Wednesday, April 4, 2007

Death and Dying, Justice, and Autism

photo credit Cindytoo

I've been thinking of some seemingly unrelated things lately. Death and dying, the American justice system, and autism.

In 1969, Elisabeth Kubler-Ross, MD wrote "On Death and Dying", a classic text that outlines the psychological stages that most people go thru when they are in the process of dying. By the 1960's technology had advanced enough that people were separated somewhat from the whole process of dying. Dying people were crated off to hospitals, and then shoved off in the corner. No one cared about them, or cared to understand what they were going thru.

Dr. Kubler-Ross sat and talked to these patients, listened to what they had to say, and wrote about how these people felt. She identified what have become the generally accepted 5 stages of grieving that people go thru when they (or a close loved one) are dying. These stages (in order) are denial, anger, bargaining, depression, and acceptance. Generally speaking, most people she talked to went thru these stages when they were dying.

Don't get me wrong. Having a loved one with autism is not the same as having a loved one dying. But as with many major unexpected life changes, there are some similarities. I think it helps when dealing with other parents who have autistic kids to remember that they might still be working thru a similar process on the road to acceptance of their child. I think most parents go thru an analogous process to what Kubler-Ross described, before fairly quickly realizing that autism is not the same as a death sentence, and though their child's life will be different, it need not be an unfulfilled one.

When I was in residency training, one of the things that I considered going into was Pain Management. Pain Management is a very interesting field, and it can be very fulfilling. But after spending a few months in the pain clinics, I knew that this field was not for me.

The first thing I learned in the pain clinics was that no one got better if there was any potential financial gain to be had from staying "ill". Trying to cure a person's pain while they had a disability claim pending, or a lawsuit pending was not difficult-it was impossible. Once the money claims were settled, then working on the pain was possible, but seemed to proceed slower than if there had been no potential secondary financial gain out there to begin with. It seemed as if the delaying of initiating the healing process got them somehow "stuck" in a cycle of pain, from which it was a lot harder to dig themselves out of. I just didn't have the patience to wait until all the patients' outside issues were dealt with.

I see a similar process occur when someone is involved in a lawsuit (say, over someone dying by being hit by a drunk driver). The lawsuit, which generally drags on over a couple of years, serves as a prolonged period of grief for those who lost the person in the accident. They remain angry for so long that at the end there is little of the relief that they expected.

So how do these two things relate to autism?

I am not a big fan of drug companies. But I think that one thing that has happened is that those who are pursuing "Big Pharma" for financial compensation get "stuck" and don't get to the stage where they accept their autistic child. They cannot keep up the intense anger at the vaccine makers without also being angry at the autism they caused. They gather others around them, who even if they aren't directly involved, still feed this cycle of "hate the autism", which keeps them from accepting their child.

You don't see such things in the Down's Syndrome community. They have no external entity to blame, so there are not large groups dedicated to blaming big bad outside forces and conspiracies for their child. They are thus free to work thru their disappointment over lost possibilities, and on to acceptance of their child.

Perhaps, one day when all of the conspiracy theories are finally laid to rest, we can all get on with our lives, help those with autism in our families develop to their fullest potential, and help society to see them as full, valid members of society. Or, perhaps we will always have a large percentage of the autism community tilting at windmills, and prolonging the process of moving toward acceptance for many.


VAB said...

That makes a lot of sense. Nice, thoughtful post.

Anonymous said...

Nicely put. It's kind of sad, too, when someone who has moved past the grief and into acceptance indicates that to one of the professionally enraged parents, because the professionally enraged can't bear that another parent isn't enraged to the same extent.

There's some weird stuff mixed in with some of these moms who are second wives and who produced (a) normal kid(s) in a first marriage and then a "defective" kid for the second husband.

That's the case with Lyn Redwood and Portia Iversen. There's all kind of psychic terror these days around planning one's family. It looks like maybe Sallie/Sally Bernard who conceived triplets after she hit it BIG in big business (including raking in the bucks from Big Pharma), what she may have been doing is trying to have all her family at once, something that was a popular idea for business women around the time she had those triplets. They were born early, as you could guess, and low birthweight (though not extremely low birth weight), and weren't vaccinated until 4 months of age, I think that's what's in EoHarm the book. All three had developmental problems, but one was much more severely impaired. Mom had to think that it was that demon mercury in vaccines what did it, and the rest is hysteria, uh, history.

Staying in the blame-someone-else game keeps mommy from the terror of (probably unfairly) blaming herself, and her fear that hubby will blame her for giving him defective kids.

Daisy said...

I, too, went through the denial and anger and even clinical depression when my son's blindness was diagnosed. His Asperger's diagnosis wasn't as difficult to face, as we had figured it out ourselves long before the school district agreed to conduct an evaluation.

Estee Klar-Wolfond said...

I'm a second wife (not hammy-down), and my husband does not make me feel this way about Adam. Thank Goodness.

Club 166 said...

Wow, I had never really been aware of this "blame the second wife" thing.

It sounds so goofy, especially since autism is so much more a male thing.

kristina said...

Thanks for this very thoughtful post, especially how you refer to families who go after "Big Pharma" as the culprit for a child's becoming autistic. I am always puzzles at the energy invested in such lawsuits and theories---what about helping the child one has today?

Anonymous said...

I think it's about women who are insecure in their relationship with their husband.

I think lots of women enter into a second relationship worried about how they measure up to the first wife (even if both in the marriage lost their first spouses to a death) . Certainly not all women would be all neurotic about this, but I think it's a problem. I just found it interesting in reading about the backgrounds of Portia Iversen and Lyn Redwood, that they both had brought normal kids into a blended family and then produced an autism spectrum kid for the second husband. Portia went on to have a couple more kids from Dov's dad, and they were normal.

Shestack (Dov's dad) didn't have kids from a first marriage, and I think that Tommy Redwood was the same.

People are just a little psycho when it comes to thinking that "they caused" a child's defect of any kind by "giving the child defective genes." I picture women like Lyndelle Redwood lying awake at night worrying about what hubby thinks of her, and hubby might be wondering the same, "the first guy had the good genes, now with the same woman, I can only produce an autistic kid."

Tilting at windows 8 hours a day, on top of being responsible for an autistic child is a good way of taking one's mind off the stresses of raising an autistic child and puts "meaning" to what they think of as a disaster. People like Redwood, Blaxill, Bernard and Iversen blow off their fears by creating these organizations that make the rest of us miserable... a tidy shifting of psychic pain, in my opinion.

In Korea, moms much prefer to be accused of being refrigerator moms (their kids have reactive attachment disorder, not autism, they say) because if the moms "own up" to causing their child's autism symptoms by neglect of some kind, then the family's genes remain pristine. If mom wants an autism dx, it's possible that the whole extended family will become less marriageable, or unmarriageable.

In the US it's just about lots of shame, not so much about worrying if you sister can get married now that you've had an autistic kid.

Of course, there are people who say, "This is what the genetic lottery brought us, and it's pretty great, and pretty scary, both."

Anonymous said...

Oops, that's supposed to say, "tilting at windmills." not "windows."

Club 166 said...

Oops, that's supposed to say, "tilting at windmills." not "windows."

And here I thought you were just taking a poke at Bill Gates...

Anonymous said...

As one of a 2 Apple household, maybe I *should* tilt at Windows. :-)

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Anonymous said...

Good post! It inspired me to write about my experiences going through Kubler-Ross's stages.