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Patty Bashe's Blogging Adventure

Good Intentions and Paving the Road to Nowhere

Why is independence so difficult to achieve? Why are too many young people with autism spectrum disorders unable to access the environments and circumstances in which they might find acceptance, praise, friendship, tolerance, welcome, and satisfaction?

As parents and teachers, it is easy and natural to feel compelled to help, assist, support, and attend to someone for whom going about the business of everyday living is challenging. After all, this is a nice thing to do, isn't it? I remember thinking, "So many things are so difficult for my son. Why shouldn't I tie his shoes for him?" At the time, that line of thought made complete sense. It is uncomfortable and at times saddening to see someone you care for struggle, especially when you can so easily make that struggle vanish.

When I talk to other professionals about overdependence (what some call "learned helplessness"), I agree with them when they say that independence is crucially important. But I do not always agree with them about how the cycle of dependence and helplessness began. Despite reading piles of textbooks and countless studies, I have yet to see anything about parents that even begins to touch on the visceral sense of helplessness parents experience as a result of this diagnosis.

As a behavior analyst, I've been trained to look for the consequence of a behavior that makes that behavior more likely to occur again. If you look at the behavior we'll call "doing for" a child, it's easy to see why parents and others do this--again and again and again. "Helping" is unique among things parents of kids with ASDs do in that it works, it helps, and it solves (temporarily) the problem. In the few seconds you pour the juice or button the jacket, you buy a quiet moment and push away another reminder of the countless ways this diagnosis can undermine your child.

Clearly, the road to dependence is paved with good intentions and powerful reinforcers. But it's also a road to nowhere, or at least nowhere you or your child will want to be tomorrow. It can be difficult to give up the comfortable predictability of continuing to do for your child. Creating the environment that fosters independence rather than dependence takes planning and work. However, it is vitally important to your child's success and--most important--his happiness. Real self-esteem is based on what you can do, not how wonderful, smart, brilliant, cute, or creative others tell you that you are. Children on the spectrum are no different.

Thank you for reading!
Patty

Parents Are Consumers: Choosing Interventions

Raising a child with an autism spectrum disorder means wearing many hats: teacher, advocate, lay authority (to name just three of dozens). There are countless decisions to make--about education, medical treatment, interventions, and therapies--and sometimes so little information, or such conflicting information, it's hard to feel like an informed consumer. Ultimately, however, when it comes to choosing your child's path, you are exactly that: a consumer.

When my son was first diagnosed, in 1997, it was a different world. There was no widespread autism awareness, no characters on hit TV series with ASDs, no recognition that what had happened in our family was more than a 1-in-10,000 inexplicable fluke. Temple Grandin was not a household name; no one's bumper bore a multicolored jigsaw ribbon. When my friend Barbara L. Kirby launched the OASIS (Online Asperger Syndrome Information and Support) website in December 1995, a search of the internet (if you were tech-savvy enough to do one back then) would have yielded a handful of papers, at most. (You can visit OASIS at http://www.aspergersyndrome.org.)

Nearly sixteen years later, there is more information available than we can begin to process. The appropriate intervention in the right hands can change a child's life. But the wrong intervention--in the wrong hands, for the wrong child, at the wrong time--can be a waste of time and money or worse.

In the late 1990s, when I considered interventions for my son, I believed that any approach that offered hope was as worth a try as anything other. After all, I reasoned, you never know. Coincidentally, "Hey, you never know" is now the advertising catchphrase of the New York Lottery. What I didn't know then was that any number of "therapies" we tried were about as likely to pay off in a substantial change in my son's symptoms and behaviors as I was to hit a million-dollar jackpot. Of course, that's not what those who promoted these approaches told me. Each could show me the handful of "miracle" outcomes; usually these were written about in parent-authored books or popular magazine articles. Looking back, I'm amazed at the fact that I never actually met the parents of these lucky children or the children themselves. And as for the others--the vast majority of kids whose results were not so impressive--well, the interventionist would say, autism is complicated, every child is different, the influence of a conflicting intervention or food in the diet or ingredient in a supplement got in the way. Someone wasn't consistent enough with it, someone didn't really understand it, and so on. It was to the intervention's or the interventionist's credit when it worked. It was anyone's and anything else's fault when it didn't.

When you consider interventions, think like a consumer. Obviously, there's more emotional investment in the outcome of a therapy for your child than there is in choosing, say, a new toaster. But you do want to know:

1. How does it work? Can you refer me to books, websites, studies, or professional organizations where I might find objective information on this intervention? Which professional, peer-reviewed journals have covered this intervention?
2. What information supports your opinion that this is appropriate for my child?
3. Specifically, what problem, behavior, or symptom are you going to address? What signs should I look for that will indicate this is working? What signs should I look for that may indicate that it is not?
4 What is the overall goal, or objective, of this intervention?
5. What aspects of this intervention can you teach me, the parent, or others to carry out?
6. How long do you estimate it will take to reach the goal?
7. How much do you estimate this will cost, in terms of time, money, and changes in our family's routine or lifestyle?
8. Looking at the other interventions my child now receives, do you see any that might conflict with or diminish the effectiveness of the one you propose?
9. What can we, teachers, and others in my child's life do to ensure that the positive outcome is maintained?

Thank you for reading!

Patty