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.