Star Ford

Essays on lots of things since 1989.

Treatment as bargaining

As for many people, reading “Don’t Mourn For Us” for the first time was a deep experience, and I hope you will read it if you haven’t. I had the related idea this morning that much of the therapy that is done to autistic children represents people being stuck in the “bargaining” stage of the ever-popular 5 stages of loss. And the problem with the apparent or actual effectiveness of some of that therapy is that it might prevent those parents from moving forward into depression and then to acceptance. In the list of stages below, the quotes are from a wikipedia contributor, and I’ve added in parentheses what autism parents seem to be doing while in those phases.

  • Denial – “This can’t be happening, not to me.” (Doubt the diagnosis is correct.)
  • Anger – “Why me? It’s not fair!”; “Who is to blame?” (Crusade-like search for causes, such as vaccines.)
  • Bargaining – “I’ll do anything/give my life savings if…” (Behavioral therapy.)
  • Depression – “I’m so sad, why bother with anything?” (Nothing.)
  • Acceptance – “It’s going to be okay.” (Support the offspring in their own path!)

In the bargaining stage for some autism parents, they actually do spend their life savings as a way to try to buy back the child that never existed. If the actual child learns to act like that never-existed ghost-child, the false wish-induced memory sparked by that charade may feed the parents “hopes” and they could stay in that phase of grief for a very long time.

An insightful wiki editor also posted on that same page: “‘All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.’ said Arthur Schopenhauer of the learning process, which corresponds to the five stages of grief with denial being ridicule, opposition being anger and bargaining, and acceptance being depression and acceptance.” For me, the truth of autism is that people are different, and that enlightenment comes from walking in our own path no matter how unusual that is, not from conforming. Every prophet and major philosopher agrees with me on that point (I mean, I agree with them). Yet some people are violently opposed to that idea, which again tells me that they are very very stuck in the bargaining phase of their grief.

I suspected some parents have used the 5 stages of loss as a self-help tool, and sure enough, a quick web search reveals lots of stories. But in the first 4 that I read, I found only pseudo-acceptance, not real acceptance. Here are some excerpts:

Story #1, explaining a mom’s “acceptance” of a daughter’s autism: “I have my moments of sadness that Natasha is autistic – but I’m realizing more and more that being autistic isn’t the end of the world. It felt like it in the beginning but, through listening to Natasha’s therapists and seeing Natasha making progress in things Tom and I questioned whether she would ever do, I’m learning that it’s not [the end of the world]. It’s still hard. I still have problems when I talk to mothers of children who are around the same age and they tell me their child never stops talking. They inevitably always ask if Natasha does the same thing. Part of me knows it’s just making conversation, small talk – but it doesn’t stop a little pain going through my heart.” To me this story is about denial (maybe she’ll eventually turn out normal), shame, and depression.

Story #2, admitting she doesn’t accept autism at all: “The acceptance stage is the one that makes me the most worried and the least confident. … That stage won’t be complete until I stop wishing I had known more, or stop wanting to turn back the clocks or stop being so determined to tell others that they could have a better chance than I. I have accepted a lot of things in life, much too many to list, but I will never accept that what happened to my child and what started his potentially life-long, debilitating, devastating developmental issues are allowed to be acceptable for the greater good. Never.”

Story #3, using the word “acceptance” to mean resignation? “And it has lead into this Acceptance stage. Accepting his physical problems, and continuing to work toward better management and treatment, but not being overly crazy about it. Accepting his skill levels and working with his whole team to improve his learning without being crazy about it…and also showing them how much I really appreciate all that they do for Levi. Accepting that the future is unknown, and that in itself is scary, but it is okay to be scared…and just doing the best we can now, and planning for the future as best we can.”

Story #4, denying the value of acceptance altogether: “One of my goals … is to present an alternative to these ‘default’ stages that treat an autism diagnosis as a devastating loss, [by presenting] a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.”

All this mourning, treatments of defects, “hope”, and “progress” are a mental cycle of the parents stuck in their grief. Becoming un-stuck hinges on spiritual depth of the kind that contradicts the cycle.

If you have any kind of spiritual life, you know there is an inside, a soul, or some place where seeds of future growth germinate. You know that great artists have immeasurable gifts that do not come from any school or book, but they are of a deeper sort. If you have ever loved, you have been moved to protect the fragile gifts of someone else, because you wanted those gifts to come out. You believed that there was much more to a person than meets the eye.

Any authentic greatness that a person achieves, whether in the arts or in virtues or in competition, starts deep on the inside, and only the final result is seen on the outside. If a comedian says five words and a million people laugh, how did he do it? The external behavior can easily be copied but the much more significant internal process is unique and not reducible to elements.

When I think of myself, I think of fundamentals and the things that are built on top of the fundamentals, like this:It may not be the same map for everyone – you could argue that non-autistic people base their knowledge on language, so language might be lower down for them. But in any case, there is depth which drives the surface.

The bargainer’s way out may be to remember their innate knowledge that there is an inside. Everyone knows intuitively that it is there, and even the system of mental health clearly acknowledges this. If you go to find a therapist for yourself, you run across lots of professionals who focus on deep mindfulness and the cognitive and emotional levels, and stress the therapeutic relationship. When the customer is paying the bill, they don’t offer behavior therapy; they focus on the base levels of the pyramid.

But when the parent or the insurance company or government is paying the bill to fix some powerless child who is said to be broken, the ethics suddenly change and the treatment providers are all about the upper, visible parts of the pyramid: the behavior. Even though that is not where the answer lies, the systems of education and “behavioral health” churn at that level. It is as if there is nothing inside. Or, perhaps the systems suspect something is in there, but they focus only on what they can conquer, and they know they can’t conquer the inside. Or they exist to feed off the bargaining stage of parents’ grief, and there is more money to be made that way. Or, perhaps these institutions are actually encroaching on the soul – where my worst fear begins.

I suspect that people mired in the bargaining phase are often not aware of what it would look like to release that and move on. It would look like you are raising a non-broken child, because that is the truth. Like any other child, you would nurture their strengths and challenge them to the next level. And like any child, you would teach and demand some manners and other behavioral standards. But you would not throw away the soul as a Faustian bargain in exchange for the surface behavior.