Drugs, Abilify and Autism

Pharma is in the news today so let's talk about an almost-wonder drug for severe autism.

Welcome to a typical day at my house, circa 2016.

Our then-teenage son Jonathan has just ripped a comforter open and its fluffy guts are strewn like a dystopian nest around our bedroom. Or was it a pillow? Or was it both?

All I know is that I’m going to spend the next several hours in a Sisyphean bout of cleanup followed by yet another expenditure at yet another store to replace yet more household necessities my son has thoroughly trashed.

I’m not exactly angry at him, though. He has zero intention to ruin my day, deplete our checking account or cause mayhem. But in his extremely limited world of cognitively possible activities, ripping fabric and throwing innocent forks and plates rank toward the top of stuff that excites his mind.

But it does not stop there. Later in the day I might find him like this, after a not-unusual act of self-injury:

I called Jonathan, who has nonverbal, profound autism, my own personal Tasmanian Devil. And really, that’s what life was like, for years. Disarray, chaos. Window shutters chewed. Our piano “decorated” with a chain of teeth marks and its (real) ivory keys levered off and tossed who-knows-where. Area rugs dragged outside. Couch cushions tossed over a fence. Irreplaceable family photos shredded. Almost daily trips to the iPad repair guy to replace shattered glass or to resuscitate an iPhone doused in the kitchen sink. Oftentimes three hours of sleep a night, if we were lucky.

Despite the agony of it all, both his and ours, I was still reluctant to put him on medications. After all, Jonny was a healthy guy with no real medical issues, and I feared the short- and long-term side effects of psychiatric drugs. We toyed with “medical” cannabis and some supplements. The THC seemed to make him happy and sleepy for brief stretches but mostly his behaviors stayed the same.

In 2019, the proverbial sh*t hit the fan. I mean, even more than usual.

Jonathan’s lack of impulse control and manly musculature loomed ever more terrifying as he started attacking his little sister, who also has nonverbal profound autism, and after he had pummeled me as well. Something had to give.

But me being me, which is to say, a dumdum doofus who could not think straight, my first call was not to a qualified psychiatrist to get him on some serious meds and fast. Rather we tried some other techniques, and also moved him out of our house since having him near his sister was clearly untenable.

We maintained a small semblance of sanity with this situation but Jonathan remained so destructive that on a near-weekly basis I would have to replace beds and sofas and other furniture that he had mangled (Craigslist was my friend). Our car interiors were also throughly trashed, with even the little knobs controlling the fan or volume were pulled out, and, I think, sometimes ingested.

It was at this point that some people much smarter than me had a suggestion. Give an atypical antipsychotic a try, particularly Abilify. Start at a low dose and see how it goes. Abilify (aripiprazole) is one of two such drugs approved by the FDA for use in treating irritability in autism. They work by modulating neurotransmitter action in the brain. They don’t improve the core symptoms of autism, but they can reduce some very negative behaviors.

One psychiatrist explained the effects this way. “Think of a bomb with a short fuse. With kids like Jonny, there is a trigger, short fuse and then an explosion. Abilify can lengthen the fuse to give him time to consider the situation before he reacts.”

And that’s exactly what happened. Almost overnight Abilify calmed Jonny down. Over time he stopped destroying furniture, ransacking cars, and, most importantly, hurting himself and others. He still enjoys ripping clothes and furniture, to be sure, but now a sofa might last 6 months instead of a week.

But there have been side effects for sure. Most notably my once-lean young man now has an antipsychotic induced tummy mound and some other previously nonexistent pudge. But nothing else of much note.

When people ask me what has made the most difference in our lives, the answer is easy — 5 mg of Abilify, which is a pretty conservative dose in AutismLand. Hands down. Nothing comes close. Behavioral techniques were useless for Jonny, and other meds we toyed with did not have these clear effects.

Do I wish for an even better magic wand of a drug? Of course I do. Jonny still is more than a handful who requires 24/7 care and who can engage in all manner of mischief like eating leaves and grass and finding a tube of sunscreen and rubbing it all over his clothes. But is he attacking us or himself? No.

I end with an email I recently received from a fellow autism mom who heard me share my story on a podcast called Autastic. What amazes (and infuriates) me is that she had to get advice about Abilify from a chatty podcast rather than one of the dozen or so professionals who likely work with her son.

“I’m a parent of a 13 year old boy diagnosed with autism a decade ago. I’m a long-time listener and fan of Autastic. Your last episode of Autastic couldn’t have come at a better time for my family. During the episode, you spoke of the med Abilify and how it had helped your sons regulate. In early April, my son went to the ER twice after we had called 911 due to escalating behaviors that we could not de-escalate at home. These self-injurious, aggressive, and destructive behaviors had been building for months prior. Long story short, after conversation with the attending psychiatric PA, I asked if the med Abilify could be considered for my son, and the PA began a course of the med, which we are now following up on with my son’s developmental and behavioral pediatrician. My son has responded amazingly well to the med, and he no longer has the violent, destructive behaviors. I just wanted to let you know how grateful I am for your sharing your stories and the huge impact it has had on my family. Thank you!”

PS: To be clear, I am not dispensing medical advice here, and atypical antipsychotics do not help every kid or adult with autism. However, I am concerned that a 5 mg pill can sometimes do 1,000x more to help than years of behavioral or other therapies — and we’re not talking about that.

Jill Escher is an autism research philanthropist. Learn more at jillescher.com.