By Muniyra Douglas
Transcribed by Tiffany Trinh
Over the past decade, Autism Spectrum Disorder (ASD) has started becoming more of a prevailing neurological disorder. ASD reflects the wide variation in challenges and strengths possessed by each person with autism. It is essential for people on this spectrum to receive the support they necessitate. On April 2, we strive to raise more awareness and acceptance for people with autism through World Autism Awareness Day.
In this VIBE TALK interview, Correspondent Muniyra Douglas speaks with Dr. Yona Lunsky; Director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health. She is also the Senior Scientist at the Centre for Addiction and Mental Health (CAMH). Dr. Lunsky discusses challenges facing adults within the spectrum, health service providers, common misconceptions surrounding the disorder and much more.
Munyira: Can you elaborate on Autism Spectrum Disorder?
Dr. Lunsky: Autism is a spectrum. Now we call autism, Autism Spectrum Disorder. Some people on the spectrum are able to do a large sum of things independently and some people are not. How we deal with mental health issues with people who are quite independent with autism might be different from how we support people who have more significant disabilities. Regardless of where you are on the spectrum, the process of getting diagnosed is somewhat similar. You would see somebody who understands what autism is, you’d be interviewed by them and they’d look at how you’d interact in different kinds of situations. They’d also talk to someone who knows you really well and their perspective on how things have been, typically it would be a parent. Usually, we try to give the diagnostic of autism in early childhood. The earlier we understand it, the earlier accommodations and support can be put into place. Our understanding of autism has changed over the years and we’re more aware now that autism is really a spectrum. There are some people who have more subtle difficulties that we didn’t really think of as autism 20 years ago and in some cases even ten years ago. Now, there are some adults who are actually on the autism spectrum, who didn’t get that diagnostic when they were children.
Munyira: What challenges can adults face?
Dr. Lunsky: The certain demands that we have when we’re adults are different from the demands that we have when we’re children. Also, the support we have when we are children is different than in adulthood. When we’re kids, we have our parents living with us, we’re in a school system and there may be support from the schools. There are also other kinds of therapy and things that are available to us. As we approach adulthood, there’s a whole bunch of things we start to focus on. There’s lots of demands, financial demands and navigating your own house care. I think, if you have autism at the same time as navigating all the adult aspects of life, then it can be stressful. It can be stressful to have a job, especially if the people at work don’t really understand what autism means. It’s stressful to handle money if you don’t have a job. There’s a lot of pressure that we all face as adults. If you live in a world that’s not designed for you and it doesn’t understand what some of your unique issues are, then those kinds of misunderstandings or the lack of support can be really hard. When it comes to mental health in particular, a lot of the clinicians who’ve been trained to work in the area of autism focus on children. We have services that are in place where we think about autism that is for children. When you become an adult, you don’t keep seeing a pediatrician or your occupational therapist who works in the children centre. You don’t have the same kind of therapy like the ones that may be available at your school or after school, so it’s a whole other system we have to work in. The adult system is really focused on the whole family. When you go to the doctor you don’t normally bring someone who knows you really well or can help speak for you in case you’re having difficulties expressing things yourself. The way we provide care to adults is different than the way we provide care to children. The people trained to give the healthcare, especially mental health care, in adulthood are not trained so much to support people with autism. It’s harder to find someone who understands what you need there.
Munyira: Why would medication such as antidepressants, stimulants or neuroleptics be prescribed to someone with autism?
Dr. Lunsky: One thing to keep in mind, is that people on the autism spectrum have more difficulties (mental health wise) than people who don’t have autism. There’s lots of different ways we can treat or address mental health issues, but sometimes medications can be helpful. The really important thing to understand is what the side effects and benefits of the medication would be. If someone is going to try a medication with autism then they want to make sure the benefits are outweighing the side effects. They need to be looking at what the change is that they are hoping will happen when they take the medication. Knowing how things are before taking medication and seeing how those things are improved or how difficult it is to manage the side effects are important things to look at. Different medication might be helpful, not so much for necessarily the autism in itself, but it might be treating other things that are happening at the same time as the autism.
Munyira: What are some concerns from family members, or parents with adult children who are diagnosed with autism?
Dr. Lunsky: There are all kind of services that adults with autism and families with adults as autism are going to have to navigate. We got our mental health services, our physical health issue health services and then we have all kinds of social services. Finding all the services and seeing how they all fit together can be a very complicated navigation process. Sometimes, something that looks like a mental health issue could be a physical health issue. We might not realize there's a lot of stress and anxiety that are connected to it. All the systems that we need to use, need to work together if we want to find a good solution to help people with autism and their families have good mental health.
Munyira: Why might some adults be unaware that they have autism?
Dr. Lunsky: Some people might have slipped through the cracks because our earlier understanding of autism was that it was a more severe kind of condition. We might have been focusing on certain symptoms and not others. For example, somebody could talk and it would be looked at as they’re verbal and talking, they’re able to do a whole bunch of things, that wouldn’t be autism. Now, we know it’s kind of a spectrum and because of that even someone who’s engaging with others socially or looks like they’re doing okay in certain situations could still be having a lot of difficulties. They could be working really hard to make their social interactions work out okay, but that doesn't mean that it’s a service coming naturally to them or that they’re not having any difficulties with that. Sometimes we call that camouflaging. People who are good at figuring out some of the rules or present in a way that we didn’t think of as being autism several years ago, they could be left. We know for example, that girls with autism and how they present, looks different than boys with autism. Sometimes girls with autism, especially because it’s milder, can be left. Women are really only figuring out they have autism as adults. It can happen to boys as well.
Munyira: Has there been any major change or improvements in the healthcare system over the last five or ten years?
Dr. Lunsky: Our willingness to create a more accommodating world for everybody. We all experience the world in different ways and we all have to have a flexible world that supports people given what their needs are. I think, that’s a shift that we’re seeing. We’re seeing efforts being done to accommodate and promote how people with autism can be successful in the workplace, how they can be more successful in school and how we can support them better. I think there’s definitely been changes but there's definitely still a lot of work that needs to be done.
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