Tall Tales of Autism Treatment

Screen Shot 2015-12-10 at 12.21.05 PMIf you’ve been on Facebook more than a year, then you are familiar with the “Memories” feature it has, where you are shown your posts from the same date in previous years. Recently, Facebook showed me an article I posted in 2009 about progress in autism treatments and therapies, and at the time I commented on how helpful it was to read. Cheeks had been diagnosed just a few weeks prior to me posting that article, and I remember how reassuring it was to me about what his future could hold. Read the original article here.

When I reread the article now, I don’t find it encouraging. I find it harmfully misleading. I can see why it gave me so much hope, but that hope was misguided.

The article discusses one family’s story with their diagnosis and treatment using applied behavior analysis, or ABA. ABA is the primary treatment method of choice for most autism cases, because it has the most objective science supporting it’s success. We have done ABA for years with Cheeks. It’s a slow process, but I agree that in the hands of someone skilled, it can bring positive change to some of the most difficult aspects of autism.

The problem that I have with this article is that it describes recovery from an autism diagnosis after just about a year or so of ABA therapy. It’s the kind of story every autism parent wants to hear, but only the seasoned ones know is entirely unrealistic. And it saddens me to think that people are reading things like this and framing their hopes and expectations around it. I know I did, six years ago. (Don’t even get me started on the use of the word “recovery” in the article. Cheeks isn’t sick or injured.)

I don’t know enough about this case to say with certainty, but it’s possible that this child was incorrectly diagnosed based on the speed with which his symptoms were mitigated. And I don’t want to minimize the effort this family made, I’m sure it was significant. But fundamental differences in a person’s neurology can’t usually be so quickly changed. Telling this story without adding that it’s such an exception to the norm does a disservice to the millions of families who struggle daily with helping their kids to achieve an independent adult life of their choosing.

In fact, only a small minority of people diagnosed with autism ever reach the point where they no longer meet the diagnostic criteria, possibly around 7%. And within that group, it’s considered likely that at least some were misdiagnosed.

Everyone loves a heartwarming story and I’m happy that this family achieved a good outcome for their child. But it’s not helpful to tell this story as if it’s what the future might hold for someone new to the diagnosis. In a future post I will tell the story of how and when we knew Cheeks was autistic, and what getting that diagnosis for Cheeks felt like to our family. I completely understand why I loved this article back then. Now, I wish I had been told more realistic stories about what parenting a child with autism would entail. I wouldn’t have liked them nearly as much at the time, but they would have given me valuable insight into facing what was ahead.

Screen Shot 2015-12-10 at 12.28.12 PMRaising an autistic child is not like playing the lottery. I buy lottery tickets knowing that my chances of winning are slim, but I’m willing to spend a small amount of money in exchange for the fantasy I get to live while I wonder what it might be like to win. I don’t want to make decisions about my son’s future using fantasy as my criteria.

What inspires me now is reading about other families who have worked for years, like we have and continue to do, to find their sweet spot between acceptance, adaptation, and achievement. Those are my heroes and they have the outcome I aspire to for Cheeks. I know many of these people and I see myself and Cheeks in them. Our story has been their story, with some changes to the specific details. I know for sure that we can have what they have. What could possibly be more hopeful, or more reassuring, than that?

 

Hope is a Good Thing

The last couple of weeks have been an emotional roller coaster for Cheeks and me. We’ve had a lot of hard moments. I’ve been torn about whether to write about them, because I feel so strongly about treating him Screen Shot 2015-11-20 at 1.00.50 PMwith respect. Sometimes that means protecting his difficult times from public view, as any of us might do for ourselves. On the other hand, it’s also important to me to be authentic about our experiences, and that includes the less attractive sides. There’s no shame in our story, so there’s no need to conceal it. I land on different sides of that argument depending on the circumstances. This time, I have decided to tell the story.

A few months ago we were introduced to a teaching method for students with communication disorders that we have come to believe will be a good fit for Cheeks. It’s a somewhat controversial methodology, mostly because mainstream credibility only comes from having a wealth of data supporting its efficacy, and this program does not yet have that. But as I have written here before, the decision to try something with Cheeks has to be subjected to two questions: 1) Is the risk low enough relative to the potential reward?; and 2) Can we do it in enough isolation that I don’t attribute changes to one intervention that are actually due to another? Having passed those two tests, we decided to try this program. I will write more about that in a future post. It’s not a private matter, just not the topic today.

Early results have been good, Cheeks is responding well to his academics. So well, that he is showing capabilities I have long believed him to have, but that we have been unable to access before now. I can’t overstate how huge this is for both of us. I’m able to see his intelligence, and he’s starting to be challenged at his true level of ability.

But, my mother always said that nothing worth having comes easily. And so it has been true this time as well. Cheeks has been experiencing so much disruption in his psyche that it’s manifesting itself in some pretty extreme behavior. He’s always shown self-injury when he’s upset or anxious, and lately we’ve had an increase in the intense moments that trigger it. Even more concerning is that he has shown some aggression to me during these tantrums – something he has only done a few times before in his life, and never this deliberately. Right now I’m sporting a few battle scars.

IMG_4956
One of our many happy moments.

I’m left with this strange combination of emotion. I am so filled with hope and certainty that we are doing the right thing in starting this program. That certainty has never come to me with any therapeutic decision we have made up until now. It has been absolutely glorious to feel it. But I am also distraught over what ostensibly appears to be regression in his behavior. There really is no pain like watching your child in so much distress that he causes bruising and bloodshed to both himself and someone he loves. I know he doesn’t want to feel that way, and he doesn’t want to hurt me or himself the way he has. I’m constantly wondering when the wrong bystander will see something out of context and his or my security will be threatened on a whole new level. And the process of experiencing all of this at the same time has been emotionally exhausting for me.

Autism isn’t pretty, I already knew that. And my resolve has not been shaken. I know this will end up being a good thing for Cheeks, I just know it deep in my heart. The getting there will challenge us, maybe more than anything has before. It will be hard, for sure. But the only thing harder than that would be not doing it.

 

The Case for Unconventional Therapies

Cheeks' receiving traditional behavioral therapy in social skills and following directions.
Cheeks’ receiving traditional behavioral therapy in social skills and following directions.

There are lots of reasons why parents of autistic children might pursue unconventional therapies. One of them is because the concept of proof—or lack of proof—can be transient, things that are at one time believed to be proven can be disproven (bloodletting, anyone?). For the purposes of this post, I am using the term “unconventional” to mean treatments that are backed with less or inconsistent scientific evidence. Rather, they are supported by smaller studies, anecdotal evidence or personal accounts.

Unconventional treatments for autism range from the innocuous (such as a gluten-free, casein-free diets), to the illegal (such as stem cell treatments which must be delivered outside the United States). Some of the more extreme treatments I have learned about include:

  • Parasitic Worms. Introducing parasites into the intestine on a short-term basis to boost the immune system.
  • Bleach. Diluted bleach ingested orally or via an enema, multiple times a day, to eliminate bacteria, parasites, yeast, or heavy metals in the digestive tract.
  • Lupron. A testosterone-inhibiting drug. Based on the belief that testosterone magnifies the toxic effects of mercury in the bloodstream.

These are just a few examples, there are many more. In the abstract, this list probably seems pretty horrifying and unconscionable. I chose the items on this list specifically because they seem horrifying, most alternative treatments are not this scary. We have not tried these therapies on Cheeks, although we have tried things that are less invasive than those listed above. But would we ever try something more extreme?

Consider this: your child is diagnosed with a life-altering disorder. He or she spends their days in physical discomfort, filled with frustration, and without personal safety. He or she is unable to access things that typically bring joy, such as friendship and education. No one can tell you why this is, and no one can give you a clear treatment plan that will help. Every solution you pursue comes with little or no change, and even when you see progress, it comes in small steps that are painfully slow to arrive. It’s all enormously expensive, and even those treatment options that are mainstream are still not covered by insurance. Everyone in your family is affected on profound levels, whether financially, emotionally, or socially. At the same time, your peer group that is facing similar challenges tell stories of success with treatment plans that your doctor never offered you. You easily find supporting evidence of these stories, even though the studies may be small ones. Can you say with certainty that you wouldn’t act on this information?

quotescover-JPG-15We follow certain rules when choosing new therapies for Cheeks. One is that we must first be as sure as possible that they will not harm him, physically or emotionally. The other is that we only try new things one at a time, so that we can tell which interventions are working and which are not. Furthermore, I believe that any unconventional therapy is best served in conjunction with more thoroughly tested options.

I also don’t believe that every symptom of autism needs to be “fixed”. Cheeks is already perfect the way he is, I am reminded of that every single day. There is greatness inside of him, I know that for sure. I don’t want to alter that as part of shaping him into the kind of person the world expects him to be. I, like any other parent, only want him to be able to live a happy, healthy life.

But seeing your child sad, in pain, or hurting himself daily—these are the things that make parents desperate for help. Desperate people do desperate things. And sometimes, desperation is the motivation needed to make a difference.