Navigating the World of Autism

Your child has autism.

Not a phrase anyone wants to hear, but something an increasing number of Canadian parents will be told at some point in their child’s development.  In fact, it’s estimated that one in every 68 children will be diagnosed with autism spectrum disorder (ASD), with boys being five times more likely to have ASD than girls.

A natural first step for parents is to seek out more information and assistance in understanding how ASD might affect their child—his or her home life, education, and possibilities for the future.

That’s one reason the Werklund School of Education has developed the Autism Spectrum Education, Research, and Training Group (ASERT). 

Headed up by Werklund associate professor Adam McCrimmon, and consisting of academic and graduate student researchers, ASERT looks for ways to provide and better understand supports and services for individuals with ASD and their families.

“Students are the driving force of the lab,” says McCrimmon, who is also a member of the Alberta Children’s Hospital Research Institute (ACHRI) and the Owerko Centre for Neurodevelopment and Child Mental Health. 

“Many of our projects and activities are driven by student initiative, and my team of students are the face of our group that our participants and partners work with.”

Two grad students involved in ASERT, who share an interest in working in the field of Autism Spectrum Disorder, talk about their research, what they’ve learned, and more:

Amanda Smith

What program are you in?

“I am currently in the third year of my PhD in School and Applied Child Psychology, here at the University of Calgary.”

What do you hope to do once you complete your degree?

“I have a lot of experience working with children on the Autism Spectrum and their families, and I would love to continue to work with children with developmental disabilities. There is just something about working with these children and their families that is so rewarding. I also love doing psycho-educational assessments, and working with children and teenagers with complex mental health concerns. Wherever I end up, I definitely want to be challenged and make a difference in the lives of children and their families.”

Why does researching and working with children diagnosed with ASD interest you?

“I have been working with children, teenagers, and young adults with ASD and their families for about the last nine, almost 10 years. The first time I worked with children with ASD was at the Society for Treatment of Autism here in Calgary. It was in this role as a behaviour therapist that I was able to really make a difference in the lives of those children.  Seeing and working with those kids everyday made my heart happy. You form such a unique bond with children with special needs when you can really prove to them that you care, and that you aren’t going anywhere--that you will support them, no matter what. Don’t get me wrong, it was a tough job, but I loved every minute of it.  I form a unique bond with every young person I meet, and really try to connect with their families as well.”

What is your role within ASERT?

“Within ASERT, I am one of four PhD students who help to oversee some of our larger research projects. Specifically, I am exploring the parental experiences surrounding whether or not to disclose a child’s diagnosis to that child. So I am meeting with families and having conversations around their experiences, either having already disclosed (told) their child about having ASD, or those who have not disclosed, and the reasons and process underlying this experience. I love meeting with families and giving them an opportunity to share their experiences. At the end of the day, I want to make something publically available (for example, a website or a newsletter) that I can share with families considering whether they would like to disclose or not. Not to tell them what to do, or how to do it--but to provide the experiences of other families to help provide some insight or perspective.”

What do you want people to know about someone who has been diagnosed with an ASD?

“I would like to tell people that someone with ASD is a person just like anyone else; with their own thoughts, feelings, experiences, and differences. ASD is just one part of a child or young person, much like having blue eyes, or brown hair. And much like anyone else, a person with ASD has strengths and challenges, but their challenges just happen to have a name. Many individuals with ASD are also concrete thinkers, meaning that they interpret language literally. And in terms of social difficulties, many individuals with ASD want to connect, but have a difficult time knowing how to do so. This doesn’t mean that if a person has ASD that they don’t want friends or to interact socially with others, but they may just need a bit of help and guidance to do so. All in all, if you’re child has been diagnosed with ASD, or if you have a friend, or family member with ASD, I would like to tell you to love them unconditionally. Everyone is going to have good days, and bad days; everyone is going to have strengths and challenges; everyone is going to experience and interpret things in different ways; you just have to take the time and listen to all the ways a person is trying to communicate with you.”

Keely Murphy

What program are you in?

“I am currently in the second year of my MSc in the School and Applied Child Psychology program and am completing my thesis research under the supervision of Dr. Adam McCrimmon.”

What do you hope to do once you complete your degree?

“Once I’ve finished up my degree, I’m planning on taking a year off to gain some experience working in the field before coming back to UCalgary to further my education. Truthfully, as much as I’m looking forward to a little break from research and academics, I think there is tremendous value in the pursuit of higher education. After all, research informs practice and the more I learn, the better I will be able to provide children and their families with the highest quality of care. In any case, continuing to develop and refine my academic and clinical skill set will always be a huge priority for me throughout the entirety of my career working with youth and their families.”

Why does researching and working with children diagnosed with ASD interest you?

“Honestly, the opportunity to work in Adam’s lab was something I kind of “stumbled upon”. After my first experience working as behavioural coach in the PEERS (Program for the Education and Enrichment of Relational Skills) program, I sort of fell in love with working with youth with ASD (Autism Spectrum Disorder) and their families, and my interest in ASD just blossomed from that point on. Over the past year and half, I’ve seen what an amazing difference can be made in the lives of youth with ASD and in the lives of their families through the work we do in the lab. Although I’ve only spent a short amount of time working with this population in comparison to some others in our lab, I’ve felt incredibly fulfilled by helping to provide much needed support to youth with ASD and their families and I really look forward to continuing this work.”

What is your role within ASERT?

“Within ASERT, I am one of four Master of Counselling (MSc) students and have recently begun to coordinate and run the adolescent PEERS research project. Currently, I help run either the teen or parent group of our PEERS intervention program. I also help organize the collection of research data, running assessment sessions with our research participants, and helping to promote and recruit participants for the PEERS program. My Masters thesis will focus on the effectiveness of the PEERS program as well.”

What do you want people to know about someone who has been diagnosed with an ASD?

“What I would like to tell others about someone diagnosed with ASD is that they are just like you and me.  In the same way that our physical characteristics aren’t what define us as individuals, having ASD isn’t what defines someone either. As individuals, we all have our own unique strengths, weaknesses, and amazing things to offer our loved ones and the world around us. I think that often, individuals with ASD are misunderstood and not given a chance to really connect with others. Because individuals with ASD sometimes communicate and connect with others a bit differently, I think sometimes people get the wrong idea about them. At the end of the day, though, someone with a diagnosis of ASD is just a deserving of love, care, compassion, respect, and patience as anyone else and at the end of the day, given the opportunity they have as much to offer and to contribute as the rest of us.”