Taking a New Look at Medications in the Transition Years

What a difference a med makes--even in transition.

DD holding the information insert to one of
FF's medications.

Okay, let's stop right there for a moment. I know there's a group of fellow autism parents out there who are ready to pounce on me. "Any or even all medications are bad business." "People with autism shouldn't be on medications." "You're torturing your child with dangerous chemicals." Yep.  Been there--when our son was 6 years old. 

The real fact, though, is that autism is a pervasive, chronic medical condition--it affects aspects of his whole being (physical, mental, sensory and social) and it's not curable (though we keep hoping). You wouldn't pull meds away from a person with diabetes or asthma or schizophrenia. More facts: Without meds, FF would never have made the progress he's made. He would have been confined to a "self-contained" classroom, could have been sent to a school outside our district for students with serious behavior disorders, and would probably have spent even more time in restraint than he already did. 

As all autism parents know, finding the right meds or right combination of meds to address the frustrating, battle zone, and water torture symptoms isn't always easy. Takes a lot of time (and co-pays). Watching a promising med erupt into side-effects that only intensify the anxiety, agitation, distractability, irritation, ticing and aggression is disheartening. Putting a whole family through that process is exhausting and sometimes frightening. 

But when your doctor finally finds the right med or combination, it's a gift. FF's doors and windows opened to the world and where there was darkness we finally saw light. Really. It was that powerful.  

So why is this a transition issue?  Med tweaking--officially known as medication management--is the ongoing process of monitoring medications and their dosages. Doctors work with parents on this throughout a child's life, but I think it may especially be an issue post puberty and during the transition years. 

That doesn't mean I'm suggesting that kids in transition should add new drugs or increase the dosage of their existing meds. I am NOT a doctor. I'm just saying there are multiple factors--physical and environmental--that may influence a young adult's successful functioning in transition. An increase in height and weight, for instance, that may affect drug efficacy. Changing hormones. Extreme stress due to any number of causes. It's all something parents and physicians need to keep an eye on--especially since so many of our young adults on the spectrum can get side-swiped and become completely derailed by depression.

Both of my children have required either a complete med change or a dosage change post high school.  

Two weeks ago I was at my hit-the-wall stage. FF's complaining, irritation, intolerance for the slow pace of positive change in his life, and his tendency to blame me for everything--school, few supports, lack of friends, no transportation, Republicans (oh, you have no idea!), and constant boredom--had left me verbally battered. We've frequently described FF as verbally viscious and me as his verbal punching bag. That tendency has waxed and waned through the years, but since this past spring it's just escalated. 

His psychiatrist was hesitant this summer to do anything about it, chalking it up to transition anxiety and frustration. I completely agreed; I really dislike increasing his medication and prefer to ride out a storm or make needed life changes to avoid triggers or address issues. But by fall I was shell shocked.  

Last week we increased his anti-anxiety med, and we're now all breathing easier. Most importantly, so is FF. He's SO much more affable, conversational and just darn likable. It's always after we see the clouds part, though, that I ask myself why we waited so long. In fact, I wonder if we had done this in February, if FF would've been more likely to participate in things like prom and graduation. Sigh.  

Beyond med management, of course, there's another transition issue here: self-management of medications and health care in general, especially for young adults with disabilities who are higher functioning. There are a lot of challenges and independent living skills involved there. And although both our children are at the higher end of the spectrum, they're very different, so helping them learn has been two separate projects. I'll tackle the health care/medication management self-care subject in another post.