Thursday, February 4, 2010

#29 Dealing with Ambiguity

Given the Lancet's recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.

And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.

And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.

And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.

There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.

Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"

I really hate that little voice.

I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.

How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?


Anonymous said...

I think every one of us goes on what feels right. It makes sense fits your own philosopy of health and healing (we all have our own.) Then we have to cross our fingers, fork out the money and see what happens. I don't give anything too long to work. Time and money are to scarce to give it one more try. When it stops working we move on. When we start something new we base how long we give it on distance, cost and other variables of convenience. I've learned that you can't depend on one thing. Today's miracle may be tomorrow's flop!

JoLynn said...

Ah, Susan. This is a really critical discussion. The angst of which you speak is what tears me up as a parent. As a teacher who has taught students with Asperger's, and as a mother of two "high-functioning" boys with autism, I will say this: our society has to get over the idea that there's a fix and/or an answer for everything. Many components of autism absolutely suck. However, I was JUST talking today with a friend about the decision we have to determine if Max is "ready" for Kindergarten. While financially I cannot wait to end day care payments, I know that, if he isn't ready, he isn't ready. I also mentioned the epiphany I had when Max and I started this whole journey: I embrace every milestone in a way I would not have if he were "typical." Everything that resembles conversation makes me euphoric. How many parents of 4 year olds wish their kids would be quiet? Not me. I wish he would talk and talk and talk and talk. I took that for granted when his brother hit that conversational milestone.

Yes, I would like to know why my sons have autism, although I am 99.9% sure it's genetic. Will that help? Not sure. I've never known blame to bring closure.

It's not a cold. It's not something that can be removed like a ruptured appendix. It's part of who they are. If someone said, "Hey, they found a cure for sarcasm," I think my first reaction would be, "What? How can I be myself without sarcasm? And who are you to say I need to be 'cured' of it?" I would then think, "What would my personality be like without that part of me?" So much of what we decide as parents is driven by what society says our child needs to be. That big cloud of, "How will your child fit in as an adult if you don't get him to this milestone by this time?" hangs over us all. It's all so relative.

I end with this example of the relativity of it all: If you live in Illinois and your child can't pronounce his /r/ sounds correctly, you probably enroll him in speech therapy. Is that true in Boston? Would they think that dropping the /r/ at the end of a word was an issue? Whose definitions do we use for our children's "abnormalities?"

tinamarie said...

Very touchy question but a really good question.
I actually tried different treatments with Tony.
In his 13 years he has been through more doctors, treatments and natural meds that he should have.
When I first started learning about Autism after he was diagnosed Everything I found on the internet back then pointed to chelation, GFCF diet, ABA, natural supplements and testing.

Tony started speech therapy at 18 months. At age 4 I did the phone call with the clinic in Florida. That was a $400 phone call for 1 hour to talk to DR Kartzinel himself who is a DAN doctor. Then he pushed all the supplements like fish oil, powders and so on. There were 7 supplements they sent me.
I did try them all as prescribed by him. They really did not work though. I also did the GFCF diet. And removed the red dye. The casien free diet did help Tony. And the no red dye in foods also helped him greatly. The rest did not.
I also paid cash to a chiropractor who had a friend that was a phlebotimist that met us at the closed office on a Saturday to take tubes of blood to send them in for testing on Tony. Again all paid in cash. THe testing labs send you the kits but then it is so black market finding DAN doctors secretly to help you so they would not loose their license.Also meeting the DAN doctors at closed offices and their homes.
I remember one DAN doctor I had to call his clinic and ask for a certain nurse. Clients were not allowed to mention DAN to anyone else. Then the nurse would set up an appointment at the doctors home as the clinic was off limits for this.
Remember this was 10 years ago and DAN was not very accepted by the medical community. I do not know if they are today or not as I do not follow this anymore.
Tony does like the 'Mom did the black market for me" story though!LOL

After this didn't really work I then contacted the ABA clinic and we started on that. Tony gained many skills and we learned so much from the testing they did. I will always recomend this therapy. I also took Tony to Autism clinic at Mayo Clinic to have him tested on his skills and everything. It was 4 days of long appointments but we gained from that. It was also very costly but I only had to pay $1500 and his Wisconsin Medicaid paid the rest. Even the hotel they paid. So we gained alot of reccomendations from this. On the last day we met with the doctors and did a conference call with Tonys school on what they should be doing with him. We did do a revised IEP right after we got back to include all of it.

I think as parents we are willing to try anything to help our children. Even going broke paying cash for these services that might offer a bit of hope for them. Sadly DAN is very unregulated or at least it was ans there were DAN doctors that were not even doctors! They are out for your money promising a cure. Some of us as parents willing to do anything become vulnerable to this.

tinamarie said...

I forgot to mention. Yes I would like to know why Tony has Autism but I have accepted that we will never know. It would be easy to blame the hep B shots they gave right after birth as we know Tony was different from the beginning.
He rarely ever cried as a baby.
But we will never know. He had genetic testing done at Mayo and those turned out normal.
Mayo clinic said it is not genetic so it could be environmental or just something that happened.