By Nina Kalirai
Autism is a disorder that affects one in 68 Canadians, and changes various aspects of the lives of both the individual with autism, as well as their family. Yet, over the years, autism has become heavily stigmatized by society.
In this VIBE TALKS interview Correspondent Nina Kalirai, speaks with Chantale Pomerleau – Manager, Communications and Events at Autism Canada. We discuss what exactly autism is and the signs, characteristics and stigmas associated with the developmental disorder. We also discuss different types of autism, whether it is something that individuals can develop as an adult, and treatments available for those with autism.
Nina: To start off, what is autism?
Chantale: Autism is a complex neuro developmental condition. It affects many body systems, including brain development. It affects all people across the lifespan.
Nina: What are some signs and characteristics of autism?
Chantale: When we’re talking about early signs, we’re usually looking at one and a half to three years old. Some children might only demonstrate a few of the signs, but this is typically the list: some children will not point and look when they want to show you something, they might show limited imaginative play, avoid eye contact, prefer to play alone, developing language and then losing it, or they might not acquire any language at all, difficulty sleeping, and restricted diet and gastrointestinal problems.
Nina: Are there different types of autism? If so, what are they?
Chantale: There’s a few different types of autism. The DSM has been revised a few times. When we’re talking about the current autism spectrum disorder, we have autism, classic autism, high functioning autism, which is also known as Asperger’s, autistic disorder, and pervasive developmental disorder, which is known as PDD. It gets a bit confusing when we’re trying to tease apart all of the different types. The easiest way to explain it is just as a spectrum. At one end of the spectrum, we have folks who have difficulty feeding themselves, getting dressed, taking care of themselves, and needing constant supervision. They will likely always need to be in a group home, or living with family members, relatives or other caregivers. There’s less intellectual capacity there when we’re talking about that variability. On the other end of the spectrum, we’re looking at more of the high functioning autism, also known as Asperger’s. There we see more differences in personality that might contribute to difficulties forming social relationships. No two people with autism are the same. Everyone has different strengths and weaknesses. We really like to focus on the strengths, because we want to see the spectrum differently, see the potential in folks on the spectrum and really just open up that dialogue about acceptance and embracing differences.
Nina: Are there any sort of treatments available for those with autism?
Chantale: There’s a variety of treatments and interventions. Most will benefit from a broad based approach, drawing upon various treatments and therapies unique to them. We always want to talk about individualized care. You can’t paint everyone with the same brush. On our website we have so many different types of treatments and therapies that some individuals and families might find helpful. Some of these include biomedical treatment, really focusing on the immune system and making sure that they’re getting in the dietary needs, because like I said many folks have restricted diets. It might be due to the textures of certain foods that they don’t like, or certain tastes or senses. The sensory experiences is very key here. There is also educational and behavioural supports, so DIR/Floortime, SCERTS, the son-rise program, and relationship development intervention, which is RDI. We really want to focus on taking the child’s lead and developing that relationship, one to one. There’s also communication therapy, so speech therapy and social stories. Also looking at the senses again, there’s vision therapy, music therapy, occupational therapy and auditory integration. There’s so many types. It can be quite overwhelming for families, or individuals. Especially adults who are getting diagnosed later in life, to have all of these options available, and not to know what the best pathway for them is can be very overwhelming. Many folks will find themselves trying a variety and seeing what works best for them.
Nina: Actually, something that you mentioned there leads into my next question. Is autism something that an individual can develop as an adult, or are most individuals who have been diagnosed with autism born with it?
Chantale: That’s a really good question. I’m not a doctor but I think doctors and researchers are still trying to figure out what causes autism. We believe there’s an interplay of genetic and environmental factors of course. There are some folks who show those signs very prominently at that early age. Some folks are lucky to get that early diagnosis. However, there are so many wait lists and there’s a lot of gaps in the funding of supports and services across the provinces and territories. Many people will go throughout their childhood, their teen years and early adult years feeling like they might be a bit different. They might realize that maybe their fellow peers in school growing up, didn’t react to certain things the same way they did, or didn’t have the same anxieties pertaining to this or that. They would go through their whole life, living with autism and not getting that diagnosis until maybe age 30 or age 40, which is quite common for many folks. It really depends on what supports or services were there, who’s in their support circle, did they notice, did they not, do they have the accessibility to even get an assessment, because those are all costly things as well.
Nina: What are some of the stigmas associated with autism?
Chantale: Unfortunately, when it comes to stigma, some people tend to make a quick judgement about something when they don’t understand it fully. They might also try to make a judgement about something, so that they can have a definition in their head, rather than taking the steps to research. With autism obviously, people have a brain that’s wired differently. Different does not mean less, it just means different. We’re all unique individuals. People with autism perceive the world and respond to it in different ways, so they might show a different behaviour. Sometimes we see repetitive behaviour. Say for example, if they’re really excited or experiencing sensory over stimulation, like too many lights, too much noise, crowding, even textures, that can be very overwhelming for to the body, so we might see repetitive behaviour. For young students in schools, seeing that they might think okay that’s different, it’s a bit strange, but it’s just how they’re responding to their environment. It doesn’t mean it’s weird. We really try and educate students through our school presentations that it’s not a weird thing. We all show repetitive behaviour. When I’m nervous about something, or if I‘m writing a test and I’m stressed out, I’m going to twirl my hair and I won’t even realize I’m doing it. That’s repetitive behaviour. There’s a lot of stigma associated with the things that we can see, so we try to breakdown those barriers and just clarify those things. Also folks with autism have different comfort levels. Again whether its sensory experiences or social situations, different strengths and weaknesses, and again these are true for all of us. Every individual will have their own strengths and weaknesses, comfort levels, things that make them uncomfortable, things that bring them great joy and we just really need to increase the understanding and inclusion. The wonderful thing is that the stigma is becoming less and less with more understanding. We’re seeing more employers like Microsoft, Ford and Shoppers Drug Mart hiring more people on the spectrum, and even changing their hiring processes to be more inclusive of the folks on the spectrum.
Nina: How does Autism Canada work to assist individuals and families who have been affected by autism?
Chantale: There’s a lot of things that we do at the national level to help individuals and families. Our number one national initiative would be our family support and resource program. We answer over 2000 calls and emails annually, providing resources and information to individuals and families. Whether they just received a diagnosis, looking for resources on how to get diagnosed, already have had their diagnosis for a long time and they’re looking for this particular support or service, we can direct them in the right way and give them information from our website and so on and so forth. We also mail brochures to families, schools, health centres and organizations. Our brochures talk about the early signs of autism, the autism spectrum disorder as a whole, the different facets and also interventions and therapies that are available, as well as where to go for help. Our family support representative, Susan Watts, speaks daily with individuals and families who just need that light at the end of the tunnel, and we’re here for families. If someone wants to leave a message, they can visit our website and contact us, or leave a voicemail, and we will get back to every single person who calls us, who wants more information or just wants someone to talk to. That is our number one program, I would say in terms of making a direct impact on a daily basis. We do this all the time. We also have online screening tools. When we talked about the early signs, these are usually captured through an online screening tool. It acts as a questionnaire, you fill it out and depending on your score it might be likely that you might have autism, but they’re not uses for diagnostic purposes. It’s just to give you that heads up that “okay, maybe I should talk to my doctor now”, and go that route to perhaps get an assessment. A screening tool is just to see if there’s a likelihood, and then you take it the step further with your general practitioner.
Nina: Where can listeners go for more information on Autism Canada?
Chantale: You can go to our website - that is our official website. We have 350 pages of autism information in French and English. We’re also on social media. You can search @autismcanada on Facebook, Twitter, Instagram, LinkedIn, YouTube and Vimeo. We can connect there. If they want to share pictures or if they want to engage and ask questions, we’d be happy to do so there as well.