Institutional review boards

By Peggy | September 7, 2010 |

Just expanding on Guidepost One a little bit … let’s say you’re thinking about pursuing a new treatment for your child.

It’s a reasonable thing to do.

When I was age 6 to 10, my father was in dental school. He was approached by someone doing research on interceptive orthodontic treatment. It was very new back then. My dad was worried about the proposal, and wasn’t sure it was a good idea that I be an experiment subject.

These days, he said it was too bad because I was the perfect candidate. I had a little bit of crowding, and it was causing some teeth to grow in crooked. Had I had spacers put in, they probably would not have needed to pull my bicuspids to straighten my teeth when I was a teen. That practice isn’t considered so smart anymore, and I know why. I had to have orthodontia again as an adult and eventually had to give up playing the euphonium because my bite kept shifting. Eventually I had to choose between chewing my food and playing.

I chose food.

Perhaps if they’d had an Institutional Review Board back then, my dad would have felt more comfortable allowing me to be a part of that experimental treatment.

IRB review and oversight is a terrific way to know whether a new treatment is being properly conducted and properly supervised. These groups, often situated at universities and medical schools, make sure the treatment experiment is scientific and ethical.

Mark and I agreed that if a university was ever studying something related to autism and we could participate, that was how we’d help Sam get access to new services and ideas. We were part of a terrific sibling study that I think went a long way to helping Sam and Michael be able to play together as boys and tolerate each other as teens.

We also had Sam in a case study, which eventually became a published paper.

One time, we thought we were participating in something bold and new and scientific, but as we got deeper into it — auditory training it was called back then — we realized it was bogus and we bailed.

Look for the IRB label.

Posted in decision-making

Guidepost One

By Peggy | September 6, 2010 |

Among the more important things we do for our kids who have autism, or other special need, is make decisions about their treatment and education — sometimes long after most other kids are down the road of self-determination.

As Sam has grown and matured, he’s been able to make many more decisions for himself. I serve, more often than not, as a backstop. For example, he’s going to a horse show next weekend with some friends. The person organizing the trip checked with me about details to make sure the plans really do work for Sam. Sam doesn’t say yes to everything — he can anticipate problems in a lot of situations. What’s different for him, unlike Michael or Paige, is he doesn’t always problem-solve “on the fly” as well. Fortunately, the person organizing the trip is experienced. I anticipate a good time will be had by all.

For years, Mark and I rather instinctively decided some things on Sam’s behalf that we hoped would be the most appropriate and ethical thing we could choose. Call it “on the fly,” if you will.

When Shahla Alai-Rosales, an applied behavior analysis professor at the University of North Texas, shared her decision-making model with me, I was so impressed. It’s her area of expertise, of course. And she thinks about ABA professionals with the rubric, not parents. But all six guideposts for ethical decision-making are good for us parents, too. When we’re fully conscious of the decisions we’re making, we have a better chance of making them good ones.

Shahla’s first guidepost is to recognize that the quality of the information you have will affect the quality of your decision. This is the most important guidepost. Assuring the quality of that information comes in three parts:

1. You have to know what resources are available to you to make a good decision. There are support networks and training options for us, no matter what age our child is. I’ve mentioned many of them elsewhere in this blog (search on decision-making). You need to know what your funding options are. There are government programs, and sometimes there is support for local programs. You need to know all your treatment options.

2. You have to be able to evaluate those resources to make good decisions. There is a lot of help out there that is cutting edge. Some of it is very good. Some of it is garbage. But you can ask about the evidence; and ask where the work fits in the greater body of research. Ask the treatment providers how they are going to measure their progress, and how they will make adjustments, if needed. Well-thought answers to those questions will help you determine the quality of the information.

3. Keep in mind your rights and responsibilities as a parent; and keep your child’s right to happiness and a childhood in mind, too. Sometimes it’s easier, when you think about your responsibilities first to see where your rights, and your child’s rights, fit in. Don’t forget that personal liberties and self-determination are part of a greater social fabric.

Posted in decision-making

Lend your experience

By Peggy | August 23, 2010 |

Some of the best help a parent can get is from another, more experienced parent.

If you are like me, one of those more experienced parents, you might think you don’t have time to help. But you do.

There is some training involved, but it’s fun and chances are, you’ll learn a thing or two that helps your family. And then you pay it forward by providing support to another family — usually on the phone, or through e-mail.

If you’re ready to help, mark your calendar for Sept. 25, because that’s the next time Texas Parent to Parent will be in Dallas for parent volunteer training.

Here’s a little from their press release:

“We believe that support from other parents is the best way to assist a family on the journey of raising a child with special health care needs. The sharing of joy, frustration, and hope with another parent is one of the most powerful experiences a parent can receive. We’re looking for a few parents who are ready to share their time and their experience.

Do you know a family who would like to attend? Who are the parents who have made a difference in your life? Who has helped you along on your family’s journey?”

Call 1-866-896-6001 … and pass this on.

Posted in decision-making, health, hope

Question authority

By Peggy | June 12, 2010 |

I’m on the hook for two presentations at the Texas Parent-to-Parent conference in San Marcos June 24-26. In one presentation I’ll be working with Shahla Rosales, a professor of applied behavior analysis at the University of North Texas, on ethics in treatment decisions. She’s come up with six guideposts for clinicians. She shared them with me a year ago and they resonated so wonderfully for me, as a parent, that I proposed we offer the same talk for parents at P2P.

I’m so lucky that she said yes.
I’ll be teeing up the talk, sharing some of those school-of-hard-knocks stories that seem to define the world of parents who have children with disabilities. I’ll focus on some of the hazards in our attitudes and fallacies of thinking. Shahla encouraged me to key in on one common fallacy of reasoning that clinicians bring to the table with treatment decisions — appealing to the wrong authority.
Treatment choices should be evidence-based, but not all evidence is created equal, Shahla reminded me. Parents are sometimes in a better position to vet the rigor of evidence simply by questioning its authority with clinicians. Simply put, ask them to explain it to you.
Case in point: when Sam first began receiving services in preschool (I shared this story in my book), I was lost during an ARD/IEP meeting that went over test results. The speech therapist said that Sam could not touch his nose when he was asked. I asked her why that was important. From my perspective, as a young mom, I knew Sam “couldn’t do” things. That was why we were there in the first place. The teachers and therapists developed an exhaustive list of things Sam wasn’t doing, which did me no good. I could have written the list out for them and saved them a lot of time. But I asked the therapist to explain why he wasn’t doing some of those things, and was stunned when she couldn’t answer me.
Of course, she was embarrassed.
She followed through, however. She called up a former professor and called me several days later with the answer.
She said that most young children learn words from context. If you point out the zit on your nose, talk about blowing your nose, get a tissue to wipe your nose, or bump your nose on the door, and make some drama over that, most children learn that “nose” belongs to that sticking-out thing on your face. I recognized that Sam needed to be told things directly to learn them. After that telephone conversation, I stuck a computer label identifying dozens of things in the house for Sam. I also made him a shoe box full of vocabulary cards.
That and other direct interventions helped his early vocabulary explode.
I try to remember to be brave and ask questions and have things explained to me, because it never fails in creating a better environment for learning.
The hippies got that one right: question authority.
Posted in decision-making, language

Evaluating health information on the web

By Peggy | April 24, 2010 |

(First published 10/26/09)

Sam often asks me to sit with him as he does his homework with his online classes. He is taking Introduction to the Internet, and as Sam says after completing every lesson, “I learn something every day in that class.” It’s been fruitful for me, too.

A special section of his textbook discusses health and fitness websites. Many people go to find information there, but few have shown either the inclination or the skills to check out the robustness of those sites.

If you are a parent of a child with autism looking for more information on the web, here is your $100-tip-of-the-day, straight from Sam: look for accreditation.

The Medical Library Association publishes the Top 100 medical websites through CAPHIS, Consumer and Patient Health Information Section. These folks are serious about hunting up quality information: researchers and professionals often depend on them to ferret it out.

Two other nonprofit groups offer the health equivalent of a Good Housekeeping seal of approval – URAC, Utilization Review Accreditation Commission and HON, Health On the Net Foundation. Look for those seals to see whether the website has been independently reviewed for the quality of its information.

And here’s my tip to continue the chase, based on years of investigative journalism:

If you’re a fan of a particular website and its information, and it doesn’t appear on CAPHIS Top 100 and it doesn’t have the accreditation, you can use your own critical thinking skills to evaluate the information. Some things to watch out for: sponsors and ads on the site, attribution of claims made, authority and credentials of those in charge of the content.

If red flags are flying in your head, then run its content through this little rubric:

http://www.quackwatch.com/01QuackeryRelatedTopics/signs.html

Quackwatch is one of CAPHIS’ Top 100 sites and can let you know whether you’re seeing some bad science.

Posted in decision-making, health

Parental car wrecks

By Peggy | April 23, 2010 |

After driving to Clark Airfield in Dish for a news story today, I remembered an important facet in pilot training that helps keeps us air travelers safe — identifying and rooting out hazardous attitudes in decision-making.


During training, pilots are given problem scenarios and learn through their choices on how they might solve that problem whether they are vulnerable to anti-authoritarian, impulsive, invulnerable, macho and resignation attitudes.

For example, “You do not conduct a thorough preflight check. On takeoff, you notice that the airspeed indicator is not working. Nevertheless, you continue. Your passenger feels strongly that you should discontinue the flight and return to the airfield. You then become upset and …”

(a) Tell them to “cool it” for butting in. (macho)

(b) Start banging the indicator to get it working. (impulsive)

(c) You think that a thorough preflight check is something thought up by bureaucrats just to waste time. (anti-authority)

(d) You say that nothing dangerous will happen on the flight. (invulnerable)

(e) Everyone continues to become upset, but you do nothing, because you feel there is no use trying to calm them down. (resignation)

Of course, a good pilot would abort the flight and return to the departure area.

With just a little imagination, we can re-work this scenario for a parent or caregiver making decisions about a treatment choice.

For example, “You notice that a treatment is draining your family’s finances or appears not only to not be working, but also is beginning to hurt your child. Nevertheless you continue. Your spouse/parents/friends feel strongly that you should discontinue the treatment and return to a previous protocol. You then become upset and …”

(a) Tell them to “cool it” for butting in. (macho)

(b) Start banging on your insurance provider to pay the bill, or other caregivers to get the treatment working. (impulsive)

(c) You think a thorough evaluation of the treatment is something thought up by bureaucrats just to waste time and deny resources for your child. (anti-authority)

(d) You say nothing dangerous could happen during the treatment (invulnerable)

(e) Everyone continues to become upset, but you do nothing, because you feel there’s no use in changing now. (resignation)

Our children — including those without special needs — depend on us to keep them safe. We can do a better job of it if we root out those same hazardous attitudes.

Several months ago, the Chicago Tribune took an exhaustive look at some of the dubious procedures being promoted as autism treatment. These “treatment” professionals have learned not to call it a cure for autism, but to the outside observer, it did appear that desperate families pursued those treatments as if they did offer that possibility.

I recognized hazardous attitudes in some of the comments parents posted online with the story and blogged about it at the time. (I’m not passing judgment. Goodness knows, I’ve made all these mistakes at some point in my life, but you, poor reader, would probably have to read six essays to get the point I’m trying to make in just this one.)

To me, this comment reads macho:
“Tsouderos and Callahan should be deeply ashamed of themselves for writing such a biased, ignorant article.”

This one comes off impulsive:
“The “scientists” who lack the sense of urgency, intellectual curiosity, and moral courage to study and treat our kids are the ones who do harm. They, along with the writers and editors of this article who encourage their complacency, are accomplices in the death and destruction of our kids.”

This is clearly anti-authoritarian:
“My 2 year old son has autism, and he has a stronger sense of ethics in his beautiful, nonverbal little soul than any of these “scientists” or government agencies that continuously seek to disprove methods of treatment that may not be tested by the elitist scientific community, but are tried and true to those of us waging this battle on a daily basis.”

This seems invulnerable:
“I’m right. I see that my comment was deleted by someone who is opposed to the truth. Chelation cures autism. No sane parent quits after just improving a few symptoms. We want our kids back to normal, the way they were born, before mercury mangled their brains.”

And this, resigned:
“Without money from the government or Big Pharma, there will be no research, and the scientific evidence so many people crave will not materialize. Parents are left to experiment on their children. Anecdotal evidence is better than no evidence in cases where the established medical community has nothing except behavioral therapy and psychotropic drugs to offer these children. Parents of autistic children are often desperate, and in desperation will experiment on their children. Sometimes these therapies result in real improvements, and sometimes there is no improvement, or the children regress. It’s a sad situation, but desperate times demand desperate measures.”

By the way, behavioral therapy is the only proven treatment. It’s not glamorous. It’s the hardest work you’ll ever do. Sometimes progress comes in the tiniest of increments, you’ll wonder if you saw what you thought you saw. But if the therapy is designed and executed in an ethical way, you won’t have any trouble running your decisions through this rubric.

Posted in decision-making, early intervention