Somehow in my long journey dealing with autism, I became comfortable with the concept of treating my daughter like a guinea pig of sorts. Comfortable might not be the correct word. I’ve accepted that neither Katie nor I have any other choice. That is the reality of autism. If I had waited for a study proving that the Soma Rapid Prompting Method (Soma-RPM) was effective, Katie never would have benefited from this educational approach which has been, frankly, a life changer. A miracle that has given my daughter agency and a voice.
That said, I’m not crazy about this state of affairs. I do my research. Read whatever reports exist. I talk to other autism parents. Then I make the most informed decision I can make. Mostly if it’s not going to hurt her, I’ll try it.
If autism has taught me anything, it’s that there is a lot the medical profession doesn’t know—particularly with respect to autism spectrum disorder and sensory processing disorder.
So when my mother began insisting that I consider medicating Katie, I began doing what I’ve done for years: researching, asking questions, and talking to parents and experts I trust. Gathering what information I could, and then trusting my gut.
When I pushed back, Mom sent me a study on various anti-depressants and other mood-altering drugs. An online search turned up several more. What I read horrified me. The side effects were severe to debilitating: constant hunger, significant weight gain, lethargy, sedation, personality changes, increased anxiety and aggression, seizures (either increased occurrence or triggering the onset of a seizure disorder), inability to focus/concentrate, liver damage, gastric issues, metabolic and hormonal changes, sleep disturbances, and more. WTF!! Why would anyone do this to their child? Oh wait, most of the children and teens in the first study were in foster care and/or group homes. (Clearly ease of handling was the primary concern, but that’s a whole different blog post. And even for this narrow purpose, the drugs didn’t do the job well, if at all.)
Not only did they experiment with the two FDA-approved medications for autism—Abilify (Aripiprazole) and Risperdal (Risperidone)—but a host of others. This pissed me off. Why do that to a nonverbal child who can’t even tell you if it helps?
I checked a couple of autism blogs. One mom had a frank discussion regarding meds. She tried both of the FDA-approved medications. The first one, Abilify, made her son a zombie and his personality completely changed. Plus his anxiety and aggression increased rather than decreased. So she weaned him off that drug and then tried the other: Risperdal, a “black box” anti-psychotic. Meaning no one knows exactly how it works. It helped. Sort of. Her son gained 30 pounds and was constantly groggy, but his aggression decreased. Didn’t disappear. Just decreased.
Another mom had success with an ADHD drug. But her son actually had ADHD in addition to autism and cerebral palsy, so who knows if this would work for a kid like Katie?
Other parents used anti-depressants, but it’s possible that the children were, in fact, depressed.
By the time I finished reading everything, I needed an anti-depressant. None of it sounded good. In fact, the more I read, the less good it sounded. This wasn’t the way to help Katie. Or was I in denial?
Mom insisted I was in denial, but I wasn’t so sure. Yes, Katie was struggling with the hormonal changes that came with puberty. Yes, I was once again dealing with aggression paired now with often crippling anxiety. Yes, Katie was bigger, and therefore, more difficult to control physically. Even so, medication just seemed like a terrible idea for all kinds of reasons.
I decided to keep researching. This was not the kind of experimentation that I was comfortable inflicting on my child.
Until next time,