Our son, Josh, was diagnosed with autism at 2 years and 8 months in 2010. Josh is the son of 2 doctors. We were looking for the best therapy, the best treatments. Anything that would maximize the chance of Josh having a successful life both growing up and after we were gone.
At the time of his diagnosis the only therapy with scientific evidence supporting it was Applied Behavioral Analysis (ABA). When Josh was 4-and-a-half we were lucky to find him in an ABA-based school where they could teach him how to do everything. He learned basic daily tasks like bathing and dressing and also reading, writing and arithmetic. They even had lessons on how to have a conversation with another person, rather than just focus on his inner world.
But, at that time, there was no good evidence supporting giving medication – particularly to someone so young.
In the beginning, Josh was just a toddler who was large for his age who couldn’t sit still and didn’t respond to his name. He talked to himself and sang to himself and loved to be hugged. His diagnosis was a surprise but we were hopeful that with his language he would improve quickly.
But in the first 2 years we saw things get worse and not better. Josh would say one thing and then do another. He would go from sweetness to a terror in seconds. And he didn’t just have tantrums, he kicked, hit, bit, and hurt people; lots of people. And all of his time in school and with after school therapists was having a limited affect.
So, at 4 years old, we met with a psychiatrist to consider medications for his behavior. There weren’t many options. We learned that only about half of kids on the spectrum respond to methylphenidate, sold as Ritalin (among other names) a medication commonly given for attention deficit and hyperactivity disorder. The medication is a stimulant like coffee or Sudafed but in kids with ADHD it acts to suppress hyperactivity. The problem is that those Autism Spectrum Disorder (ASD) kids that aren’t helped by Ritalin, the behavioral symptoms often get worse. In Josh’s case, he became incredibly aggressive. He bit more frequently, with less provocation, and harder. He freaked out more often. In just a day or two on medication he became vicious, angry, and scary. He was impossible to control.
It was a very short trial.
At 7, we tried N-acetyl cysteine (NAC). This is actually considered a dietary supplement. As medicine interns we had given it to patients with acetaminophen overdose and the sulfur smell of rotten eggs would permeate the hallways. The new formulations smelled and tasted (a little) better and could be delivered like an Alka-Seltzer dissolved in water. But NAC caused stomach discomfort and some horrible smells from the bathroom. However, it was worth continuing because it seemed to us that he was doing better. But then the special formulation of NAC dropped off the market because of problems at customs. This provided us an amazing opportunity.
We had never told Josh’s ABA-based school about starting NAC. ABA is data driven, his performance on all his daily tasks are scored on how well he follows instructions, how well he stays on task and how frequently he has a meltdown. We asked them to look at the 8 weeks of data from when he was on the NAC and compare it to the weeks before and the weeks after. There was no change in his aggressive and disruptive behaviors.
That was the end of that trial.
And then Josh started to grow. Like I said, he was always big for his age. But then he got bigger.
Our final “breaking point” was when we started to question ourselves about his future. A decision to put a child in residential care is never taken lightly. But Josh began destroying his bedroom and throwing things every night.
A few years after the NAC trial, tantrums increased to daily and even multiple times of the day and night. We removed all of his books and toys from his room so there would be less for him to throw and less to clean up.
We started asking, “Will we be able to live with him, safely? Can we raise him and be an everyday part of his life if we are afraid of him?”
For years, he had been under better control at school and with his therapists than with us, but he started acting up there as well and he started falling farther and farther behind academically. How could he focus and succeed if all the classroom time was taken up by calming him down?
Could a 140 pound, 5′ 8″ 11-year-old who was only going to get bigger be managed by a mom who was only 5′ 4″ and 120 pounds, soaking wet?
We went back to the psychiatrist when he came home from school one day and completely refused to get off the bus with his Grandmother because he was expecting his Grandfather.
We discussed things we had tried in the past and considered a new approach using a different ADHD medication called Guanfacine.
But the psychiatrist was able to sit with Josh for an interview by himself and ask him what he wants. Honestly, that seemed almost magical.
“What do you want, Josh?” she asked.
Would he know what that means? Does he see things in himself that make him different from others or that make him less happy? Does he know that he does things that get in the way of his daily activities?
“I want to stop biting my arm.”
That had been going on for about 2 years. About 6 months after the school and therapists found a successful behavioral contract that got Josh to stop biting and kicking other people, he started biting his own forearm. It happened when he was frustrated, excited, angry – just about any time when he would have lashed out in the past. He now bit into his left forearm and he was developing a large reddish brown callous.
The psychiatrist told him, “I think I can help with that.”
She recommended he try Prozac. It’s available as a liquid so it’s easy to deliver and while studies didn’t find a change in symptoms associated with the diagnosis of autism – difficulty communicating, rigidity, etc. – several studies, including a randomized controlled trial, showed that Prozac is associated with reduction in “self-injurious behavior.”
We started slow. 5mg a day then 7.5, 10, 15, 20, 25, 30. Now, he’s up to 40 mg every morning.
Since he started, he’s had follow-up appointments with the psychiatrist.
On his first follow-up at nearly full dose, Josh quietly talked to the psychiatrist without my wife or I around.
“Doctor, your plan is working,” he said.
“I’m not biting my arm as much.”
He had noticed a difference. We also noticed. As did the school and the data that they take on him (just like with the NAC, we hadn’t told them that he was on a new medication). That seems like a great change, and it is, but he also insisted on meeting with the doctor in the hallway outside the bathroom, not in her office.
Much of his inflexibility hasn’t changed. He still clearly has autism. He is repetitive, rigid, challenging and he still tantrums. But once or twice a month is nothing like every day. And if he hops on the balls of his feet and invades your personal space by sticking his face in yours, you can tell him that he is too close and that he should step back. And he does.
He apologizes. Spontaneously.
He practices his ukulele — obsessively at times — but also with genuine pleasure.
He goes to the movies.
He asks for things nicely.
He could be better to his brother (frankly, his brother could be better to him) but they spend some time together that’s wonderful.
This past summer, Josh attended Tikvah Family Camp at Camp Ramah in the Poconos with just his brother and one parent. He was assigned a new one-on-one counselor (Chaver) because his counselor for the last 3 years had to stay in Israel for law school finals. And, despite our trepidation, he had a great time. He wants to go back next year for the Camp Ramah Yedidim program and stay for 2 weeks with NO parents.
I don’t know if the Prozac will be effective as a long term solution but it has had made me so hopeful! Camp next summer, a celebration when he becomes a Bar Mitzvah in March of 2021. These were things that I viewed with endless anxiety 6 months ago but that I look forward to today.
Over the years, I’ve hung out with a lot of parents trying to decide whether to give a child on the autism spectrum medicine.
“What will be the effect of giving medication to my child?” we’ve always asked.
But recently, a friend suggest I ponder this, “What will be the effect of not giving medication?”
I can only hope that 6 months or a year from now the medication will still be effective, but if or when it stops working, I will always know that we had this calmer time.
Evan Stein is Director of Neuroradiology at Maimonides Medical Center.