Thursday, October 11, 2007

Magical Thinking

photo credit-D'Arcy Norman
creative commons license

Recently in the Chicago Tribune a story appeared entitled "Autism and the adopted child". I have to admit the title caught my eye, as the father of an adopted child that is autistic. The story referred to a blog post by a mom by the name of "Pickel" that was entitled 'Finally My Son is..."Finding the Words" '.

I should have known that my blood pressure was going to rise as I read this story. The first paragraph starts out:

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess.

Anyone that starts off referring to their son as "the child" and as a "developmental mess" is digging themselves a hole in my book. I understand when adoptive parents don't bond immediately with the children they adopt. But it's been two years! When will she consider him her son?

Did we have any clue when we adopted him? Sure, some. We knew he would be delayed because most institutionalized children are. However, just before he turned 3 the local school district told us that they estimated his developmental age to be between 13 and 18 months. We were floored.

Little Pickel has been diagnosed with Institutional Autism, H Pylori, Severe Gastritis, food allergies, Gross and Fine Motor Delay, Receptive and Expressive Speech Delay, Post Traumatic Stress, Separation Anxiety, and Sensory Processing Dysfunction. He has also had three surgeries; ear tubes and 2 GI scopes.

He is only 4.

Oh, OK, I get it. This is one of those pity party pieces. What she really wants to say is "Poor me! I didn't get a perfect kid. I was willing to put up with a couple of weeks of inconvenience, but not two years!" Well, life doesn't work that way. When you sign up to be a parent, "You get what you get, and you don't throw a fit" (as they used to say in my son's 1st grade classroom).

The first several months with Little Pickel were pure hell. He had night terrors that lasted 45 minutes to an hour every night (he still has these 2-3 times a week). We discovered double ear infections that resulted in ear tubes. We also discovered some creepy crawlers that made the trip home from Russia with us. They were NOT very welcome in our home.

Developmentally, he did not progress quickly. By his 3rd birthday he had only about 100 words and could not put phrases or sentences together. He was just beginning to run without looking like an otter (or falling all over himself) and he screamed at me every time he tried to ride his tricycle (because he was so frustrated).

OK. So you rip a two year old from the only home he's ever known. Talk to him in a language he doesn't understand. And then YOU get upset when he expresses displeasure the only way he knows how, by screaming. And don't forget to complain that a few bugs came home in your luggage, and that your prize son isn't quarterback material.

We tried everything for him. We rid him of his H Pylori (a bacterial infection in his gut), we removed his problem foods (gluten, casein, bananas, oats), and we worked diligently on his sensory issues. Still, he seemed locked in his own world...screaming uncontrollably when things were not right, when I would back up the car instead of go forward, or if he could not have graham crackers to ease his tummy aches.

He had orange stools up to 10 times a day, acid reflux, gas that could light the entire house on fire, sleep problems so severe he was getting close to (maybe) 5 hours of sleep a night, no social skills, aggressive behavior so severe that I had to learn to physically restrain him or get hurt myself (or worse, allow him to hurt himself), and bum rashes so horrid we resorted to Bag Balm, a cream used for milking cows.

Is there a style manual out there that sets out that in order to describe how horrible your life with your special needs kid is, you have to describe their bowel habits and how violent they are? Her son had some GERD and food sensitivities, as well as the aforementioned ear problems. So do tons of other kids. So what? There's also lots of other things that kids have. Things such as asthma, physical disabilities, learning disabilities and emotional problems. That's life. Deal with it.

So, when we moved back to Chicago in the summer of 2006 from Russia it was like a weight had been lifted. He qualified for Early Childhood, we found the Pfeiffer Treatment Center and started him on a vitamin chelation* to rid him of his heavy metals, yeast, and to balance his bacteria, and our parents were both there to help us with him.

Since our move Little Pickel has thrived. One might say he is "Finding the Words".

I have said many times on my blog, Discussing Autism, that there is no cure for Autism. Because Little Pickel's diagnosis is Institutional Autism and not organic autism, he can be "cured" and he can recover. Unfortunately, there are hundreds of thousands of children with autism who will not be cured.

Now this is why I'm writing this post. Pickel comes out and says that her "Little Pickel" didn't have autism as a result of being poisoned by vaccines (he had 'institutional autism', which is supposed to be caused by gross neglect and lack of physical stimulation, not by toxins of any sort), but she goes ahead and takes him to someone who treats him with the same hocus pocus that they would use to remove all of the "toxins" from him. What sort of "magical thinking" is going on here?Why would anyone (parent or practitioner) do that? I mean, unless you were so totally corrupt as a practitioner that you would try to sell your wares to someone when even your standard goofy arguments (your kids were poisoned by vaccines/heavy metals/whatever) cleary didn't apply. And at the same time you have parents that are clearly so dumb as to accept that even though the cause of your kid's autism is totally different, you'll still use the same goofy treatments.

However, there are some children like Little Pickel who have been cured...and they have Autism.

The documentary, "Finding the Words" is their story. It is the story of eight "perfect babies", each given a grim diagnosis of autism spectrum disorder (ASD) as toddlers, whose grieving families fight prejudice, misinformation, and despair to get their children well again.

Written and produced by Elizabeth Horn Nelson, the documentary has really picked up steam because there are parents out there like me who have hope. Horn Nelson is also the co-founder and president of the Autism Recovery Consortium and even the Huffington Post picks her up. You can view the trailer for the documentary here

I'm sorry, which is it, Pickel? That you can't cure autism, or that you can? I love it when people can't even keep their stories straight.

According to Nelson Horn in a 2005 interview, "The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''

For over a year that is how we felt with Little Pickel. Then, when we had no where else to turn we found The Pfeiffer Treatment Center and finally got our answers. They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here.

How much is Little Pickel talking now that we did a vitamin chelation? So much so that there are times he won't shut up! (Perhaps he should try out for "Autism, the Musical!")

He is constantly chattering about going to school and how much he likes his new teacher. He sings "Twinkle-Twinkle" loud and out of key as he is falling asleep. He is finally asking questions (but everyone is labeled as a she).

And occasionally from across the room or from upstairs I hear him yell..."Marcie, come here!" in a sing-sing song voice.

Could you punish a kid for that?"

Perhaps this is why so many people fall for all of the hocus pocus "cures" that are out there. They are uncomfortable with uncertainty. They can't handle that no one can tell them a definite reason that there child is autistic, and worse, that they can't offer them a cure. So when hucksters come along with "magic pills" that will make their kids all better they jump at it. It's reassuring. It gives you hope. And when you go to the doctor's office you have a built in pity party support group, where you can all play the game of trying to top each other in the "My life is worse than yours" game.

The only problem is that it's all a big house of mirrors. And to waste large portions of your time and money on such things is at best silly, and at worst abusive to your child who is getting unneccessary and unproven treatments.


Another Autism Mom said...

I loved the expression "goofy treatments". The whole article is goofy.

Another Autism Mom said...

I'm referring to Pickel's article of course.

Jenny said...

The MIND Institute had a researcher come and talk about his experience with the hideously abused and neglected kids in Romanian orphanages and how he developed a study based on getting Romanian families to consider being foster families (it's just NOT done there, hence the orphanages).

Anyway, they talked about neglect causing symptoms of autism. They talked a lot about the infectious diseases the kids had. But they didn't mention that if a girl is autistic (but not in an orphanage), and say 16 years old or older, she's more likely than a typical girl to end up raped, or just seduced, and pregnant and leaving a baby at an orphanage.

In my opinion, they ought to find a higher number of autistic kids in orphanages. Never mind the cases where the parents have a baby, intend to keep it but at age 24 months they figure that the kid is defective and drop him off at an orphanage, same thing, there will be more handicapped - including autistic kids in an orphanage. And one doesn't need to invoke "toxins" or try to blame vaccines or neglect to get that autism, though surely neglect is bad news for any child.

The MIND never put that lecture on the web, which is kind of unfortunate, the speaker had some great videos from Romania that showed how bad the situation was and how the kids thrived in foster care (which was of MUCH higher quality than foster care here, truly, much higher).

Anonymous said...

The quacks could make a killing with this institutional autism. It looks like the kids have marked progress after they are adopted. It would be a matter of convincing the parents to try some hogwash, and then saying, you see, it worked!

J said...

Unbelievable. My favorite line had to be:
"They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here."
As opposed to a pseudo-scientific exlpanation?
Oh, so that's the kind of people the quacks are looking for!

Amanda said...

how sad that the child's worth seems to be directly related to how much progress they make toward being the perfect child these parents (and most) feet entitled to.

Suzanne said...

Like I said, Curebie is the nicest way I can put it. though, "goofy" fits well, and made me giggle.

Anonymous said...

Forgive me, but I laughed out loud when (while reading the laundry list of the poor child's ailments) I came across "separation anxiety." Ahem. I think that must be hereditary, as all 5 of my children had it. :-)

Club 166 said...


I think you're right that, for hucksters, there's a lot to be gained from throwing all of those kids with some reactive attachment disorder/institutional autism into the general autism pool. If they specifiy a two year recovery period, they can show even more gains than they do with even the general autistic population.

I love how many supporters of bogus therapies specify that it can take years to see a difference. This virtually ensures that they will be successful, no matter what else the family happens to be doing (and of course whatever normal maturation/learning was going on).

I have even seen proponents of the GFCF diet say changes in behavior can take years. It takes 30 minutes for me to see a change in my body when I eat something really greasy. But it can take years for eliminating stuff to show a change. Right.


Daisy said...

I keep thinking of Amigo's toddlerhood, with his night terrors and his double ear infections and ear get the picture. He's my biological child, and NT or Asperger's, he's a delight. Don't pity me folks; I may whine a little now and then, but I have a good life and good kids.

farmwifetwo said...

Removal of dairy took 48 hours - bye bye, diahhrea, horrible rashes, nap/nightmares/terrors. One week later, one 1/8th tsp of butter, 2hrs and a 24hour meltdown, headslamming, diahhrea, nap/night-terror, nightmare (for him and his parents).

That's the mild one... did NOTHING for the severe one.

Cure - NO!
For everyone - No.
Help him - yes, but if he'd been "normal" wouldn't have someone told us to remove foods for the IBS?? Not per the dev ped "some kids with ASD are like that??"

I don't believe in cures... just hard work by the parents and child.