Interviewed and Transcribed by Stella Hui, Information Officer
About Dr. Grace Iarocci (2018 Professional of the Year, BC Autism Awards)
Dr. Grace Iarocci has worked in autism research since 1992, and in 2000 joined Simon Fraser University where she founded the Autism and Developmental Disorders Lab. Dr. Iarocci has a passion for cutting-edge, innovative research, but her dedication to the community extends way beyond this. For six years, she has run a free Summer camp for autistic AND neurotypical children, providing an opportunity for them to learn how to understand emotions to initiate friendships. Dr. Iarocci is also a co-founder of the Autism Mentoring Initiative (AMI), a peer mentorship program at SFU, to assist students with ASD with the transition from high school-to-university. Launched in 2014, peer mentors receive formal training and on-going supervision. Dr. Iarocci is also deeply committed to and involved in, influencing policy on ASD and worked closely with Ministry of Children and Family Development and Ministry of Health and several community agencies in BC to improve the state of services for individuals on the autism spectrum.
Tell us a bit about your professional journey with autism.
It all started before I began my graduate work. I had finished my bachelor’s degree at McGill, and I wasn’t ready to go back to school right away, so I ended up living in Ottawa with a friend for about two years. During that time, I wanted to find out if a career in psychology was what I wanted, and I just started working.
I worked for the Ministry of Social Development, which is similar to the Ministry of Children and Family Development here in BC. I worked with children with emotional issues and helped the family deal with the behavioural challenges that children were having. And during that time, I realized that I enjoyed working with children.
I was also working part-time for a large organization in Ottawa, now called the Ottawa-Carleton Association for Persons with Developmental Disabilities. They serve any child who had intellectual or physical disabilities, such as hearing and vision impairments. It was the first time that I had the opportunity to work with children on the autism spectrum. Working with them was challenging but also very rewarding.
That’s where my interest in autism all began. Working in this organization, I would sometimes be assigned to work with adults in group homes or younger children at home to provide support to their families.
I started reading more about autism and realized I wanted to go back to school and do graduate work with a focus on autism. Back at McGill again, I was very fortunate that I found a supervisor with specialized expertise on autism as well as intellectual disability.
However, my interest in autism is not just professional. I’ve always felt a special connection and bond with the autistic children and adults that I’ve worked with, and they mean a lot to me.
How did you feel when you won the BC Autism Awards in 2018?
When I was first invited to the BC Autism Awards, I was shocked. I’d never expected to win an award, but I was so happy and honoured. My work is not done because I hope to be recognized or given awards, but when somebody does recognize you and give you an award, I was very touched by it, and it makes me feel like people appreciate what I do.
Dr. Grace’s Colleague receives a certificate from Cindy at the 2018 BC Autism Awards
I think there’s still lots of need. The other day I was just talking to a speech-language pathologist about a child that we’re both seeing. One of the things we said to each other was,
“boy, I can remember the old days when I first arrived in British Columbia in 2000, it was like the Wild West.”
There was nothing really for autism children and their families. There was nothing organized well. And now years later, we’ve made so much progress, but I think there’s still a lot more to be done.
We have to appreciate the improvements and where we are today, but at the same time, we can’t sit and say, “now we’re okay”. We can’t say there’s nothing left to do. I think there’s still a lot left to do.
What are some specific needs in your community (Lower Mainland, SFU-Autism Lab, Peer Mentorship Program)?
One of the things I see as a significant need is mental health services for children and adults on the spectrum. It’s been ignored. There’s an emphasis now on early intervention and detection, but what the government and policymakers don’t realize is that all of that early investment is great, but children change over time and what they need as toddlers, preschoolers or school-aged children is very different than what they need when they get older as teenagers or adults. You can’t just put a lot of funds or emphasis on the little children expecting that it’s going to last them their whole life. We need various targets at different ages and stages with the same intensity. There should be the same intensity at all the transition points in a child’s life because the needs are so different.
It’s a significant need for the older kids and the adults, and particularly in the area of mental health, because a lot of them, unfortunately, are subjected to very challenging experiences at school and in their community. There’s still a lot of stress and difficulty with inclusion that contributes to their mental health challenges. We have to do something about that, and they need support that is both preventative and reactive during crises.
This is also part of the reason why we started this mentorship program at SFU. Of course, not all adults on the spectrum are going to end up in universities, but wherever they go, as adults, they need support. This mentorship program is a way to give them a more natural transition into post-secondary studies. It’s just the starting point. Students with disabilities first have to register at the Centre for Accessible Learning. In this place, all students with any kind of mental health, learning, physical, or developmental issues that interfere with their learning, can get help. Our staff there allow specific accommodations to be communicated to the professors and instructors and so on.
Any highlights from last year that you would like to share with us?
I’m excited about a lot of projects that we’ve been planning for the past year, but unfortunately, with this COVID situation, things are being delayed and stalled. SFU has now begun to emphasize on autism and developmental disabilities in the research work that we’re doing.
We’ve started a collaboration with a massive centre in Israel. Their autism research centre has done a fantastic job of bringing together the hospital, community, and university, to build on the strengths of everybody involved to move research forward. Families with autistic children and autistic adults, the hospital where patients they see patients, as well as the people at the university where the studies often take place, are all involved in the research process.
You can’t do such collaborative work in one small lab; you need a real concerted effort from the community and hospitals or agencies the provide services. Everybody has to be involved. And that’s what we’re hoping to do here in BC—bringing together all stakeholders and experts to study autism better and solve real and existing challenges. We want to answer questions that are relevant to clinicians, parents, and autistic people themselves and do it as quickly as we can. We want to learn from what Israel has done and see whether we can replicate their research in Canada. This can change the future. The progress doesn’t move forward as quickly or as well unless we really come and work together as a bigger and multidisciplinary team. We need to have the same vision.
What resources would you like to see more of for autistic individuals and their families?
There’s so much, but like I said, mental health would be one of the top things. We need equal access, meaning that the services are not so expensive and everybody should have access to them when they need it. It should not be just individual services for the one child or adult on the spectrum, but also something that helps the whole family like family counselling or family support. I think we have to get away from this idea that we’re only fixing the individual or that the individual is the only one that has the problem. This is something that we all face. The family, community, and society have to work together. We have to think about it more broadly.
Autism awareness will be another thing on my list. From society’s point of view, people need to understand autism better than they do now. I think people still have in their minds, this media and movie kind of representation of autism, which is unrealistic. It’s not what it is, and I think we’ll suffer as a result of that. If people don’t understand you, then they’re always interacting with you in a way that denies who you are and your genuine self. We need to educate people about all the different manifestations of autism. It’s not just one thing, and our policymakers and the decision-makers need to listen to what you have and what autism is.
I’ve worked so closely with Autism Community Training for many years now. We have recently spoken to policymakers and advocated with regards to health authorities about mental health and all of these. We’re making tiny, tiny steps, but every step counts, right?
Sometimes I do get discouraged, but I think overall, I’m positive. I just keep moving forward and fighting the good fight.
What drives you to continue to advocate for autistic individuals and the autism community?
As I said, this is more than a profession for me. I am not autistic myself, so it’s not fair to say that I’m part of the community, but I feel very understanding of what people on the spectrum are facing. I empathize with the families, individuals, and children. I feel like it’s a critical mission to advocate and stand up for this community, and because I have some letters after my name, I guess maybe somebody is going to take that more seriously.
It’s crucial to me that I try to do the most that I can to help the situation. If you don’t speak up or advocate, things are just going to stagnate or even get worse. It’s a responsibility that we have to take on, in addition to the work that we do on an everyday basis, as a researcher or clinician. When I see clients, I feel like advocacy is a critical component, because, without that, the other efforts will not be as effective.
It gets very, very busy, and sometimes I feel like a little worn down, but I have autistic students at the university that I see in my research work and collaborate on research with us. Even at that level, I think to myself, this is important, and I have to keep doing it no matter what. Also, if I feel worn down, I get revitalized when I speak to these individuals or their families.
I have been doing my job here with autistic people in BC since 2006. Sometimes I feel exhausted because I just think that things are not moving forward. Sometimes it is even moving backward and requires a lot of constant advocacy and work, but you have to find those people and thoughts or feelings to motivate you and say it’ll be okay.
Keep advocating, but at the same time, we have to take care of ourselves. Self-care is so important. I usually tell the parents to surround yourself with positive people, so that you can last your journey, which is lifelong. Sometimes I have to say to myself the same.
This year our winners are being granted $1,000 to put towards a project to benefit the autism community. If you had received the $1,000, what would your project have been?
That’s a good question. I would say that right now, my priority would be to put that money into a project that I’ve specifically asked autistic people to be involved in, educating others about the situation. So I would put that into learning more about autistic people themselves, what they can teach others about their experiences and what they want others to know about autism and what impact it has on them.
Do you know an everyday autism hero that could benefit from $1000 towards their project?
Go to our Awards page now and nominate a hero! Nomination deadline: Aug 28. While you’re there, purchase some raffle tickets! They’re just $20 each, and funds raised go directly towards autism initiatives throughout British Columbia. www.autismbc.ca/awards