Bound by clinical shackles

Family set free by doctor's treatment of autism as a brain injury

Published on July 19, 2014

Carolyn Forsey has a stack of diaries that fills a table. All sizes and all kinds of covers, from kittens to flowers to plain old exercise books, each one filled to the end.

In one entry, written Sept. 15, 1998 — her son Daniel’s first day of school — Carolyn almost foreshadowed what life had in store for her and her husband, Fred.

“The road ahead may be a hard one,” Carolyn wrote in the entry, addressed to Daniel’s kindergarten teachers. “There may be days when we are not all that strong.”

At the time, Daniel had been diagnosed with autism. Though he only received the diagnosis about a year earlier, Carolyn can pinpoint, by going back through her diaries, when things started going wrong. At age two years and seven months, Daniel had only about a dozen words. His parents were beginning to realize he wasn’t developing as he should, and that, Carolyn says, was when things began falling apart.

Upon receiving the official diagnosis, Daniel was put on an anti-psychotic medication. The Forseys trained in applied behaviour analysis (ABA) therapy at Toronto’s Geneva Centre for Autism, and started using it with Daniel at home. Fred resigned from his position as a teacher because, Carolyn says, “things were getting really, really bad.” Among the issues was that they couldn’t get Daniel to sleep.

 “He’d be down for a half an hour and up for an hour. Down for 15 minutes and up for another half an hour. Whoever was up with him in the night couldn’t function the next day,” Fred explains.

As Daniel grew older, his difficulties became more pronounced. Carolyn has one word for his time in school: hell. Many teachers tried their best; some accused Daniel of trying to get all their time and take up all their attention. In high school, Carolyn says, they just wanted Daniel out, because he started becoming violent.

By age 18, Daniel’s list of medication was quite long, and included an anti-psychotic, an anti-depressant, something for aggression and a skin cream for acne, among others. The Forseys weren’t sure how much those things helped, but trusted their doctors and made sure Daniel had each med as prescribed.

Daniel had long been aggressive. As a toddler, his tantrums went beyond the terrible twos into situations where the Forseys had to hold him down to prevent him from hurting himself.

When he became a man — today he stands at 5’8” and weighs 190 pounds — this became dangerous, especially since there was no warning. He might go into a rage when he wasn’t allowed to buy every tennis ball at WalMart; he might get angry for no apparent reason at all.

“He got stronger and after a while, he’d tear the shirt right off me,” Fred says. “He did it in the mall one time. He’d grab your hair and pull it. You’d really have to do something to break his grip. You might just say, ‘No, Daniel,’ and he’d turn on you, or you might just be sitting down and he’d come over and grab you. It would take him a half an hour to come out of it, no matter what you did.”

Sleep was the only break the Forseys got, but it didn’t come easy or often. Daniel still woke in the night, and would sometimes leave the house when his parents didn’t know.

One time, a neighbour called to say  Daniel was out walking around in his bare feet. Another time, the RCMP brought him home in just his shorts.

Things were getting desperate. The Forseys, living in Saskatchewan, moved home to Botwood, but their situation didn’t improve. One night, Carolyn was alone with Daniel when he attacked her.

“There was nobody there to help me and no way I could get out of his grasp,” she says, as her voice cracks. She uses a tissue to dab her eyes. “I bent back his fingers and he grabbed me in another place, and I realized I could really get hurt.”

Carolyn called the Waterford Hospital’s emergency line and begged them to help her.

“They basically told me there was no support for Daniel and to call the RCMP,” she says.

The next time it happened, Carolyn called again — by this time, she had heard from a relative with an adult son with autism about

Dr. Hugh Mirolo, the province’s only neuropsychiatrist. The Telegram published a five-part series about Mirolo in 2011, including his practice of treating autism as a brain injury. Based at the Waterford, Mirolo sees only adult patients.

Carolyn was told Mirolo’s wait list was eight years long, so she began calling his office herself, pleading his secretary to get Daniel in to see him. On one occasion, Mirolo happened to be in the room, and his assistant passed him the phone.

He listened to Daniel’s story and asked what medications he was on. Right away, he suggested the Forseys go to their family doctor to have him taken off eight of them, and others rescheduled.

“Primum non nocere,” Mirolo quotes from the Hippocratic Oath when answering why he gave Carolyn such advice. “First do no harm. You have to think what you are dealing with. If the medication in any way, through interactions or direct effect, has any chance to create more problems than solutions, you have to do something about it.”

Most of Daniel’s medications are contra-indicated for people with brain injury, Mirolo says. For instance, while an SSRI anti-depressant is a perfectly good medication for someone with depression, in a brain-injured patient, it’s known to cause aggression. The skin and the brain share a common embryological origin, he says, so it’s not uncommon for acne creams to also have a negative effect.

Along with autism, Daniel has a history of incidents that may have injured his brain, from being delivered by forceps as a baby to having had a seriously high fever as a small child.

Medications changed as Mirolo requested, the Forseys saw a change in Daniel within 24 hours.

“He was calmer. You’d see him smile, and you’d never see that before. He’d smooth the cat. There was no aggression. He wasn’t coming after us. He was more settled. It got better and better,” Fred says.

That was in August of last year. Daniel, now 21 and a regular patient of Mirolo’s, having moved up the waiting list as an emergency case, has had only one aggressive episode since. The Forseys, so close to moving Daniel into a home with 24-hour care, are no longer stepping on eggshells, waiting for his next outburst. He goes out to restaurants with his family, and enjoys ATV rides — both things he could never do before. Non-verbal for most of his life, he responds when his mother calls him on the phone.

“Who do you love and who do you live for?” she asks him playfully.

“Mama,” he replies without hesitation.

Mirolo, whose wait list has now grown even longer, feels many doctors focus too much on treating autism as a communication problem. It’s not communication, he says; the problem lies in the processing of information.

“A communication problem would be somebody who is deaf and mute. If you ask somebody who is deaf and mute how to get to the bathroom, they will point and go out of (their) way to tell you. Ask an autistic patient where the bathroom is and they won’t even look at you. The problem is not in the communication, it’s in a whole number of things. That’s what gives away the brain injury.”

Another problem with the treatment of brain injuries is a consistent lack of assessment, Mirolo says, acknowledging he has a luxury most doctors don’t when it comes to spending more time assessing patients. Patients should have a neuropsychiatric assessment with a diagnosis that is pages long, not just a word, he says. Mirolo considers brain injury symptoms likes Daniel’s to be “clinical shackles,” chaining patients down.

“When symptoms are assessed correctly and targeted correctly, you cut those chains,” he says. “You give the patient the possibility of having a different quality of life, and the parents the same possibility.”

Carolyn keeps her stack of diaries, and reads them to reflect on the past. Her entry for Daniel’s kindergarten teachers bears more significance than ever.

“I pray that you will have faith to believe that he is God’s workmanship, hope to know he can recover from his bizarre disability and love to enjoy what it is you must do to help him recover,” it says.