Light at the end of the tunnel

Justin Brake
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How newfound knowledge about neuroplasticity can help people with autism

Kendra Thornhill (left) and Krista Murphy are the structured teaching program co-ordinators at the Elaine Dobbin Centre. Blues in the Night, a fundraising concert for the centre Thursday night at the LSPU Hall, will be hosted by CBC’s Jonathan Crowe and feature performances by Denis Parker and The Instigators. Tickets are $20 in advance. — Photo by Justin Brake/Special to The Telegram

The problem was on my mind the whole way there: are the mind and the brain one thing or two?   So when I arrive, kick the slush off my boots and find my interviewee after a quick scan of the restaurant, I introduce myself, sit down and just go for it, knowing full well the response to the big question is coming from a perspective shared by few others in the world’s medical community.

“We separate things to understand them but we should not understand them divided,” I am told.

“They are things that are very close to each other, (and) it’s the same as the division between specialties. That’s why I’m doing what I’m doing.”

Dr. Hugh Mirolo, Canada’s only practising neuropsychiatry specialist, speaks eloquently and enthusiastically, and in a way his patients (and journalists) can understand.

It’s late afternoon and the year’s first heavy snowfall has just subsided. We have a distractingly handsome view of the harbour, but as my conversation with the Waterford Hospital-based doctor evolves and the waterfront lights are illuminated by dusk, I find myself captivated by what feels like a privileged account of knowledge that could soon precipitate a paradigm shift in contemporary medicine.

In the wake of The Telegram’s “The wounded brain: a hidden pandemic” series written by reporter Tara Bradbury last spring, Mirolo saw his patient wait list double from five years to 10.

The Argentina-born doctor’s background in neurology and psychiatry — a rare combination in medicine that amounts to a perspective of cognitive functioning that few today possess — enables him to understand his patients’ histories in the context of both mind and brain, though they are one.

As a result, he says, he is able to arrive at more comprehensive diagnoses of pervasive developmental disorders, including autism spectrum disorders (ASD).

“A single brain injury patient can make you jump from a general neurology problem to a general psychiatry problem to a neuropsychiatry problem … a number of times,” he explains.

“If you’re not comfortable in those three realms … the possibility of messing (the diagnosis) up is pretty high.”

Mirolo’s patients travel from as far as the United States to seek his expertise and a proper diagnosis to explain their frequently misunderstood and misdiagnosed conditions.

Understanding ASD — which includes Asperger syndrome and Rett syndrome — in terms of their neurological and psychiatric origins, is crucial for people living with the disorders, in terms of determining the most effective treatment, says Mirolo.

Autism, which he says derives from the “perfect storm” of genetic disposition and what is medically known as brain “noxa” — anything that damages the brain — is no exception to the cases of misdiagnoses he sees.

“When you are able to retrieve some of the histories from family members, more times than not I find more than one noxa that has affected that brain at the time when it was in the womb, at the gestation time,” he explains.

“So all of a sudden the brain that was developing in the fashion that all other brains do enters into some parallel universe in terms of development, mainly because it was affected by that noxa.”

With a proper diagnosis, ASD patients can be prescribed treatments that best promote neuroplasticity, a term used to describe the mind-brain’s capacity to alter its own structure and functionality.

A relatively recent breakthrough in neuroscience, since many cognitive deficits have long been considered permanent, neuroplasticity is understood by doctors worldwide as something of a saving grace for those with cognitive impairments.

“Neuroplasticity is the light at the end of the tunnel, as I usually explain to my patients,” says Mirolo.

“If we have neurons A, B and C, and neuron B is limp or dead, neurons A and C will re-branch and grow and will take over the function of neuron B … and will work without it. If you multiply that for hundreds of thousands of neurons in the brain, then the possibilities are humongous.”

So long as cognitive impairments are properly diagnosed, Mirolo reiterates, treatments most conducive to the promotion of neuroplasticity will have the best results.

That means people living with ASD — particularly those with Asperger syndrome and or otherwise greater cognitive function on the higher end of the spectrum — have the potential to achieve self-sufficiency, complete post-secondary education and join the workforce, among other accomplishments.

“You can see how people clinically recover,” says Mirolo. “You don’t need to do any special study for that.

“One of the things that fascinates me with autism (patients) is that they have a different application,” he says, referring to how the ASD brain functions differently, not necessarily at a lower capacity.

“At the time of the noxa hit — for some reason that brain, instead of developing as we develop the regular brain, enters into that different application. The brain evolves and it functions that way … which is really fascinating to me.

“With the savant aspects of autism,” he continues, “they can do a whole bunch of things that none of us can do. Their application functions a lot better than ours for a number of different things. For example, not unlike people with brain injuries they are often very visual (thinkers) — they have a capacity to even count items in two seconds that we will not be able to count because they will give a visual shot and they know exactly how many items are there.

“Or, to give another example, their capacity for memory never ceases to amaze me.

“In the particular case of autism, the cognitive deficit that they have is more of a patchy cognitive deficit that somebody with a brain injury would have … and the more symptom-free they are the better that application functions.”

Mirolo points to the immense potential for the ASD mind, in optimal conditions, to achieve a sufficient degree of functionality, in some instances perhaps even greater than that of the average human mind.

Of course, the rest of the world would have to play a role in creating an environment for the ASD mind to develop in such a way.

But a lot has been accomplished in the past few decades, Mirolo said, because it wasn’t long ago that people with autism and other cognitive impairments were chained to the walls of the very hospital where he now runs his clinic.

Resources fall short

The Elaine Dobbin Centre, home of the Autism Society of Newfoundland and Labrador (ASNL), has implemented programs to create environments for trained professionals to work with people with autism.

The centre was built in 2005 at a cost of $1.8 million. The province contributed $120,000 and the rest was fundraised.

The government recently increased its financial support for the development of programs to help people with ASD and their families.

Yet ASNL president Joyce Churchill says the needs of patients still far outweigh the accessibility of treatments.

The government-funded (and Eastern Health-administered) early intervention program enables parents of ASD children to hire trained in-home workers to spend up to 30 hours a week with their child.

Issues of worker availability and inconsistency in quality of care and wages aside, the program ends when a child with ASD enters Grade 3. Next year it will be extended until entry into Grade 4.

“We’re fortunate in this province … to be the first province to have an early intervention program of (applied behaviour analysis therapy), the first of its kind in Canada,” says Churchill, whose 35-year-old son, Stephen, has autism but didn’t have access to programs when he was diagnosed at age five.

“We were the first province to put it in universally. Now, it hasn’t been all that we wished it to be. It’s getting there and it’s kept improving, (but) you’ve got wages that are perhaps not as good as they should be, so recruitment and retention are issues. But people are getting trained. And every child in this province is offered that program upon diagnosis.”

Still, kids with ASD wind up in limbo in the gap between Grade 4 and adolescence.

“We struggle, at the centre, to try to provide programs for our young adults with autism, to try to give them some kind of a better life,” Churchill said.

“We’ve had some real successes, some young people who’ve gone on to work … who might not have gotten off the couch perhaps.”

See ‘NOT’, related story, page B2

Adolescents and adults at the higher end of the spectrum would likely enter the centre’s social thinking program, which “focuses on the skills they need in order to make friends and navigate the social world a little bit better,” explains Krista Murphy, a structured teaching program co-ordinator at the autism centre.

“For people on the mid to lower range of the spectrum, we have structured teaching, and that basically deals with increasing independence,” she says.

“So that could mean in life skills, or prevocational skills, to help them become employed in the future. It’s a very wide, encompassing program. It depends on the functional level — it’s completely individualized to the person. Right now, we’re seeing upward of 20 individuals in that program.”

Churchill says the centre’s programs are evolving and improving according to the needs of the people there, and according to the funding the centre receives.

“We’ve been quite successful in the work that we’ve been able to do, but it’s still very, very small in comparison to the need …,” she says.

“We’re doing not too badly, but we need a lot more funding, so programs can be researched, developed and grown.”

Churchill has devoted almost every single day of her life to caring for her son. He recently learned how to swim via a program at the centre, a huge accomplishment for anybody at age 35. But it pains her that his well-being still rests in the hands of bureaucrats and decision-makers.

“I get out there and fight and try to understand that the dollar has to be spread around,” she says.

“And it’s not that they haven’t been fairly generous, I suppose, in a way, to help us get going — because we had a lot of catching up to do. You’re looking back (only) 20 years or less to doing anything at all with people with autism (here). And I’ve got a 35-year-old. So he had nothing, nothing in preschool, nothing in school.

“In my quietest hours I look at him, and he’s not getting his rights, you know? In terms of providing for him, I’m grateful for what we do have, but it’s not nearly enough to make a difference right now. These people, intellectually — there’s no reason to believe that they cannot learn to do things. Lots of people take on new careers at that age. We talk about lifelong learning. You’re not ready to be written off.

“But our adult population are not getting the services that they require, and that they deserve in society.”

Blues in the Night

Mirolo echoes Churchill’s sentiment regarding the need for greater resources.

“Unfortunately in Newfoundland,we don’t have a neurorehabilitation centre,” he says.

“That’s why I founded the Neuropsychiatric Patient Association of Newfoundland and Labrador in 2008. It’s a group by patients for patients … for neuropsychiatric patients to have an environment to do cognitive rehabilitation and promote neuroplasticity.

“And that’s what the Elaine Dobbin Centre is (aiming for), so we’re closely linked together in our goals. In the group I founded, patients get together and play things like chess to promote rehabilitation. But the key issue is the promotion of neuroplasticity through the active cognitive rehabilitation. You need to stimulate the brain to do things.”

Given what we now know about autism, the primary question is no longer, what do we do to help people with ASD? Instead, since we likely all agree people living with ASD are no less deserving of an opportunity to grow and become self-realized individuals than anyone else, the question becomes, what good reason do we have not to help create the environments they require to do just that?

The province is in a unique position to be a national leader in autism care, given that it is home to the country’s only practising neuropsychiatry specialist — one who volunteers his time to advocate for people living with autism and other brain injuries. In addition, it is home to a group of people who planned for, fundraised and built an impressive facility to fill a gap that the health-care system did not.

In its continued pursuit to provide for all of the province’s citizens with ASD, the Elaine Dobbin Centre will continue its ambitious fundraising campaign, which includes the Blues in the Night concert Thursday night at the LSPU Hall. Hosted by CBC’s Jonathan Crowe, the event will feature performances by Denis Parker and The Instigators.

Tickets are $20 in advance, available at www.rca.nf.ca or by calling 753-4531, extension 200, and $25 at the door.

creativequestioning@gmail.com

Organizations: Waterford Hospital, The Telegram, Elaine Dobbin Centre Autism Society of Newfoundland and Labrador Neuropsychiatric Patient Association of Newfoundland and Labrador CBC

Geographic location: Canada, Argentina, United States Newfoundland

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  • Maggie Meyer
    August 12, 2012 - 16:51

    would request being added to mailing list. thank you in advance.