And when we were wrong, we promptly admitted it
September 22, 2008 by Kristina Chew, PhD
Filed under Health
In recognition of National Alcohol and Drug Addiction Recovery Month, b5media bloggers on the Health and Wellness Channel are blogging about the 12 step program of Alcoholics Anonymous. (For a list of the 12 posts on the 12 steps, check out Healthbolt.) This is Step 10:
Step 10 – Continued to take personal inventory and when we were wrong promptly admitted it
I don’t know a lot about the 12 steps; the call to self-scrutiny and to reexamination of oneself stated in Step 10 have been important for me to apply in figuring how to help Charlie. Parents today frequently note how overwhelmed they feel by the sheer range of treatment—educational, biomedical, and otherwise—options that they hear about for autism. Should one try the special diet? Try brushing or a therapy dog or multivitamins? Chocolate? Invest in hours of ABA, or Floortime? Chelate, do HBOT, secretin (who remembers it……), various magic supplements? Hire an advocate to accompany you to IEP meetings; hire an outside home autism consultant; hire a lawyer and take the school district to court. Homeschool. Move.
How do you know a therapy is “working”? When do you decide to stop giving it a chance? How do you evaluate the claims of autism “professionals” and (bio)medical “practitioners”?
How do you know that the “results” you’re seeing—more talking, better eye contact, improved play skills, increased sociability—-are really happening? Are the results of whatever novel and latest treatment you’re trying?
When Charlie was just diagnosed, we were at our most inclined to “try anything” and “do whatever it takes.” Hope can be expensive and once you’ve made the investment, signed the contract for delivery of services, bought plane tickets to visit the highly recommended practitioner: Perhaps some belief is inevitable? Perhaps it’s hard, if not impossible, to actually be objective? Parents are often told to only try one therapy at a time, so that if some change occurs, they can trace it to whatever therapy is in use; but how many parents are going to wait to see if something works, especially when all they are hearing is hurry, hurry, hurry?
It’s only now, with the maybe wisdom of hindsight and with having seen treatments (and treatment fads) come and go, that I think I’ve been able to start being able to say, yes, we were wrong about some things—some treatments were not necessary. I can’t believe, but can begin to understand, why we spent so much on something that we ultimately walked away from. Only now–not exactly “promptly”—have I been able to admit to being wrong about some decisions for “treating” Charlie. Wanting to help one’s child (something called love; it can be at least a little blind) can lead a parent to do things that, give other circumstances, she or her might think better of. (Fools rush in, where angels fear to tread……)
I’ve been, in fits and starts and really only on the weekend when Charlie’s been sleeping in or napping in the later morning (still adjusting to the new school shedule), working on my book. I have figured out that (aside from being about Charlie and autism—yes, surprise; not!) it is focused squarely on language and, too, communication, especially of our basic human needs. In the course of going over hundreds—ok, thousands—of pages of writing from three blogs written over three years plus, I’ve found myself shaking my head over what I did a couple of years ago, over decisions and actions I felt so sure of, that I now see in a different light. Hindsight and reflection might bring wisdom, but wisdom sure can sting.
No wonder it’s taken me awhile to recover from recovery from autism.
I’ve often used a metaphor for describing the process of learning the nuances of nonautistic social interaction, that I think is also apt for the process of learning what to do as the parent of an autistic child. It goes something like this:
Remember from high school geometry, when you had to inscribe regular polygons inside a circle? As the number of sides of the polygons increases, the polygons’ area gets closer and closer to that of the circle.
The process of building an internal abstraction of nonautistic social and communication, in order to answer the question “What would Joe Normal do in this situation?” — which is what autistic people do, in order to learn and sync with nonautistic social and communication patterns — is like constructing that series of polygons, each a better approximation of the circle than the previous one. Each new bit of information we add to the model doubles the number of sides, and an octagon is a better approximation than a square, a 16-gon better than an octagon, a 32-gon better than a 16-gon, and so on.
I think the process of figuring out what to do as a parent of an autistic child (and in the case where the parent is himself on the spectrum, the process of figuring out what to do as a parent in the first place!) is similar: we build a better and better fit, bit by bit.
The critical thing is to understand that this polygon-building is a lifelong endeavor… both in the case of developing better and better understanding of mainstream social and communication patterns, and in the case of developing better and better approaches to parenting.
I understand completely! I look back to some early things I said/believed, and am embarrassed at how totally ignorant I was. The most embarrassing thing I think I said was in an early IFSP meeting when he was probably 2.5 or 3 years old. I told them my goal was “recovery to be indistinguishable from NTs”. OMGosh! I feel like I am at a 12 step meeting! lol
Well, the important thing is that we keep a sense of humor about it all, don’t stress about the past and learn from it, enjoy the moment, and hope for the future, endeavor to make this a better world for our kids.
Slightly off topic, I am 2/3rds through Paul Offit’s book, and thoroughly enjoying putting the pieces into full perspective with the history of the events in his book. Talk about the need for a 12 step program…
Step 4: Made a searching and fearless moral inventory of ourselves
Step 10: Continued to take personal inventory and when we were wrong promptly admitted it.
It’s the facing of personal bogeymen, seeking to keep a clear eye and acceptance in the interest of achieving the serenity and personal strength to avoid continuing addiction.
Trying to live up to both steps right now.
My reflection is that I owe my developmental pediatrician for giving us a paper on evidenced and controversial treatments the day we walked out of the evaluation. We did a little further research but it helped keep us centered and helped us to stay aware of the odds. I can’t say at this point that I regret that knowledge.
That would be something very helpful for any parents to have—–one of the publications that the AAP put out last year had a section like that. Certainly we didn’t encounter any such information when Charlie was being diagnosed.
With regard to the evidenced and controversial treatments, New York State’s early intervention program has Clinical Practice Guidelines (it also comes as a CD) on interventions for Autism (they also have similar book series’ on communication disorders, motor disorders, and Down syndrome). The guidelines are broken up into three separate “books” one is the Technical Report which has the full texts of all the studies and evidence reviews, The second is the Report of Recommendations (full text of recommendations, summaries of supporting evidence) and finally the Quick Reference Guide which is just the summaries. Please note that Now the guidelines were researched a while back and it was a very expensive undertaking (not to mention the time it takes to perform the research and get them through a state health department the size of NY, but the guidelines at least lay out treatments (those in practice at the time of the research) and the available evidence supporting them. New Yorkers can get the guidelines for free, just go to the state’s website, non-New Yorkers can purchase the clinical practice guidelines–their research has been used by Autism Speaks to support the insurance mandates for Autism.
Kristina, this post touched me deeply. I am, three years after my son’s diagnosis, realizing that many of the things we did were not ‘musts’, but certainly felt like it a the time, and it was an incredibly expensive lesson to learn, both financially and emotionally. In our case, we were told to ‘hurry, hurry, hurry’: try different therapies and approaches, because the ‘window of opportunity’ would close soon, so we did. We wanted the best for our son, we felt it was our duty. We did traditional therapies, and we also did alternative therapies that made ’sense’ to us. Frankly, even back then we realized a lot of things not only didn’t sound ‘right’ but were dangerous. We steered clear of that. And even so, we ended up spending more money than we could afford, and are now struggling with debt, and the emotional aftermath. We realized that some of those people that were so interested in our son, didn’t anymore as soon as the money ran out. Talk about a sobering experience. Now I focus more on quality of life for my son, and quality family life for all of us. So in the midst of realization and dissapointment, at least we learned valuable lessons. Ironically enough I still encounter people that now think I’m not doing ‘enough’ for my son. But now that I have time to spend more time with my children instead of being in waiting rooms 60% of the time and on the road for the other 40, it is my kids and my husband who are reaping the benefits. The road to recovery might be hard, but there is no looking back for us.
We were incredibly lucky in that during the first visit after our diagnosis our specialist sat my husband and I down and talked pretty bluntly to us about quack “cures” and what to look out for. I would love to see that kind of talk become best practice with diagnosticians. It also helped us considerably that most of our friends at the time were scientists, so they instilled a respect for peer-reviewed studies in us that held us back from going off the boards too badly. We definitely tried some things that in retrospective were pretty stupid, but I pretty much chalk that up to the initial grieving/panic/anger stage that people tend to go through, and I always refused to do anything physical to the kids (meds, diets etc). I’ve definitely made a lot of mistakes though- no question about it.
One of the things that I always found very helpful was having outside input on whether something was working or not- while I’ve definitely had qualms about it, there have been times when we’ve tried medications on one child and not told their teachers, workers, etc., so that we could get an unbiased opinion on whether something was working. I know that whenever we tried something new I was always desperate to believe that it was working, so even in my daily diaries and worksheets etc. I’d always tend to put a better “spin” on things, even if it didn’t really exist. Sometimes having someone who didn’t know that a new med was being tried could give us a much more objective opinion. I’m not sure that it’s the right way to go, as I’m a huge believer in our team working together, but it probably did save me from some stupid beliefs in the past.