Wednesday, June 22, 2016

A problem focus misses 'the opportunity to get kids to thrive'

By Louise Kinross

Dr. Evdokia Anagnostou is a neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview. She is also a Canada Research Chair in translational therapeutics in autism. We talked about her role in clinic and conducting research.

BLOOM: Why did you get into working as a clinician scientist with children with autism?

Evdokia Anagnostou: It started as a puzzle. When I was training as a resident in neurology, I was used to seeing a child and, based on the signs and symptoms, knowing which part of the brain was involved. If the child couldn’t move their right arm, I knew it was a part of the brain on the left side that was responsible. For most problems in child neurology we can identify the location, and sometimes the nature of the difficulty, based on signs and symptoms, before ordering tests. But when it came to autism, there was no way of figuring out what was happening in the child’s brain based on signs and symptoms. It was curiosity that got me into it.

BLOOM: What does a current day look like for you at work?

Evdokia Anagnostou: My current schedule is 20 per cent clinical—so I see 10 to 12 kids in clinic one day a week—and four days or 80 per cent is research. On a typical research day I’m seeing kids who are coming to be part of research protocols, writing and reviewing grants, writing papers and analyzing results, and meeting with granting agencies, government organizations and senior administration.

BLOOM: What is most rewarding about your job?

Evdokia Anagnostou: I think I have the best of both worlds. I get to work really hard to invest in the future of children with neurodevelopmental disorders by doing research, but I also get to contribute to the lives of kids right now by keeping my clinic day active. So I feel like I’m contributing on a day-to-day basis and to changing the future.

BLOOM: What is the greatest challenge?

Evdokia Anagnostou: Managing a balance between clinical and research time. Let’s say I see a child during clinic day on Monday, but that kid gets into trouble on a Thursday, which is a research day. I can’t say ‘I’m sorry, I can’t do anything until my clinic day.’ We need to meet the needs of the kids as they arise.

Another would be building a large research group based on research funding, and making sure you don’t lose that funding. You have a whole group of 15 to 20 people depending on you for their job. There’s constant grant writing and running after funding agencies to maintain or increase our funding.

Another challenge is figuring out how to do the most you can with the resources you have. On the clinical side, there are what we think should be standard services that are unobtainable given the envelopes of money we have from the various ministries. So figuring out how to meet the most needs with the money we have, and being creative about it.

Finally, it's challenging trying to develop therapies without fully understanding the biology of the differences we see with autism spectrum disorders

BLOOM: Which of your research projects is most promising?

Evdokia Anagnostou:
Our most promising project is with the Province of Ontario Neurodevelopmental Disabilities Network (POND). That’s because the network admits that we don’t understand how a variety of neurodevelopmental disorders like autism, ADHD and intellectual disability are different in terms of their biology. So POND takes the approach that we are going to understand first the biology by understanding the genetics and brain structure and function, irrespective of what diagnosis the child has. And then develop treatments for that. It’s most promising because sometimes we label kids for a variety of reasons in ways that don’t necessarily reflect what is happening in their brain and therefore our treatments tend to fail.

BLOOM: Have your thoughts about autism shifted over the years?

Evdokia Anagnostou:
I started thinking of autism as a neurological disorder. I still think it’s a group of neurological disorders, but right now I’m much more aware of it as a difference than a disorder. I’m aware of all of the distress and dysfunction it can produce in kids and families, but I’m also aware of the strengths it can produce in certain areas and the value people with autism see in their difference.

BLOOM: How could we better support parents of kids with autism?

Evdokia Anagnostou: I think this is an area where we have done particularly poorly. The needs of parents of kids with autism and related problems vary from learning skills to help their children to learning how to see the strengths and beauty in the difference to getting support from other parents and understanding that their situations are not unique and there is strength in numbers.

We need to help parents learn that they have the ability to advocate and change the environment for their kids with special needs. And parents need to partner with their kids as they grow up to produce better outcomes that are desired by the kids themselves—instead of what we think is important for the kids.

BLOOM: What advice would you give yourself now, if you were just starting out?

Evdokia Anagnostou: I would give myself a couple of pieces of advice. One would be that although it’s very important that we understand where the dysfunction and distress comes from, a strengths-based approach is something you need to be engaged in from the beginning of your research. Otherwise, you learn the hard way that if you only see the negatives in the difference you don’t appreciate the strengths and the value that people see in their difference and therefore your approach for intervention is limited.

The other piece would be to be prepared for the long haul—meaning that it takes a long time to actually see concrete results. If you’re going to be a clinician scientist in this field you need to be able to delay gratification. It’s extremely rewarding and you will make differences in kids’ lives, even if particular days look more distressing. And families and kids are your partners in this journey.

BLOOM: What have you learned from the families you work with?

Evdokia Anagnostou:
I’ve been in awe of their resilience. I have learned to take a strengths-based approach and to actually look at the things the families and kids do well and work on those.

Initially, when you’re a young investigator, you see the distress and you just want to fix it. It’s a more naïve approach, to see all the things people are failing at and to work on those. I haven’t changed in the sense that I still believe you have to go after the things that produce distress, but that’s not the only way to improve quality of life, and, in fact, it’s a very narrow way.

If you only work on the things people are weak at, they never become great at them. But if you work on things kids are good at so that they develop a skill set where in some areas they struggle and in some areas they thrive, that produces a balance. The areas where the kids are thriving are more important for their quality of life. If you focus on problems, you miss the opportunity to get kids to thrive.

BLOOM: If you could change one thing about your job, what would it be?

Evdokia Anagnostou:
More than 24 hours in a day.

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This is a very inspiring piece. It is wonderful to hear such a strengths based view of both clinical work and research with children and families. great interview questions and meaningful responses! It is wonderful to see the work and effort on further understanding autism and other neurodevelopmental disorders. The passion and dedication of this physician is obvious!

Wonderful piece that I'm going to share widely. Thank you!!! We need more of articles like this that translate research into our kids' disabilities to parents and families (and kids themselves).