“I realized I did not know much about this population”: How the transition out of high school impacts youth with autism or intellectual disabilities

(Photo provided by Yara Bayoumi)

“By gaining a better understanding of the lived experiences of youth with autism spectrum disorder and/or intellectual disability, more effective resources and plans can be developed to help ease their transition out of high school.” ~Yara Bayoumi

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*In the following article, TS refers to The Synapse and YB refers to Yara Bayoumi;

TS: Could you briefly introduce yourself, your supervisor, the topic of your thesis, and the field it contributes to?

YB: My name is Yara Bayoumi, and I graduated in May 2023 with a Bachelor of Arts in Psychology with Honours, and a minor in Classical Studies. 

Under the supervision of Dr. Barbara D’Entremont and her grad student Lindsey McCollough, I completed my thesis which studied the quality of life of youth with autism spectrum disorder (ASD) and/or intellectual disability (ID) and how it was impacted by their experience transitioning out of high school. Briefly put, ASD is a developmental disorder that involves social and behavioural difficulties, and ID is a condition that affects acquisition of knowledge and skills. 

This research project contributes heavily to the field of developmental psychology. By gaining a better understanding of the lived experiences of youth with ASD and/or ID, more effective resources and plans can be developed to help ease their transition out of high school. 

TS: What was the inspiration for your study, your research question, and the main results?

YB: My main inspiration was that I wanted to learn more about the lived experiences of individuals with ASD. I realized I did not know much about this population, so when I got an opportunity to work on this project I was delighted. 

My main research question was: can transition planning (i.e. making a plan about one’s future goals) predict quality of life, and which transition factor (i.e. traits that affect the transition out of high school, such as family involvement and support) is the best predictor?

We discovered that youth with ASD tended to experience more transition factors compared to youth with both ASD and ID. We then discovered that program structure (i.e. how the high school runs and provides resources for youth) was the only variable that significantly predicted quality of life in youth with ASD and/or ID.

TS: Could you provide a brief summary of the methods used in this study?

YB: Our study surveyed caregivers of youth with ASD and/or ID aged 14-21 years and enrolled in high school. The survey contained questions about the caregiver’s perceptions of the child’s autism diagnosis, quality of life, exposure to different transition factors, and anxiety, as well as general questions about demographics (e.g. age, gender, ethnicity, etc) and the caregiver’s relation to the child. The survey contained multiple choice questions, and most questions had an “other” option where participants could type in their own response.

We set up the online survey using Qualtrics, a web-based software. The link to the survey was mainly distributed by emailing local, provincial, and national disability organizations; posting on online support groups; and word of mouth. Most caregivers were recruited via emailing. Once they completed the survey, we cleaned the data (i.e. got rid of data we couldn’t use) and analyzed it.

TS: Are there any future studies that will be conducted based on your method or results?

YB: Further research into specific transition factors will be necessary to learn more about how each one impacts quality of life. It is also vital to study them from different perspectives, such as those of youth and their family members. 

TS: What would you consider the most intriguing part of your research?

YB: The most intriguing part was the data cleaning process. We had 1426 participants, but we had to exclude many of them due to their not meeting the criteria. Some of those criteria included: their child being outside the age range of 14-21 years; their survey being incomplete without containing responses about quality of life or transition factors; having inconsistent responses; and failing the “attention checks” used to gauge whether participants responded to the surveys correctly. 

We ended up with 181 participants which was slightly disappointing when the initial count is taken into consideration. However, after discussing this with Dr. D’Entremont and Lindsey, I was reassured that this amount was still more than enough; its limitations and implications just had to be clarified in the thesis.

TS: Is there anything else you wish to share about the research experience/ study?

YB: I never realized just how much labour goes into starting a whole new project from scratch. Lots of unpredictable things popped up that we had to deal with as they came. I found this to be a brilliant experience where I developed lots of transferable skills that have been and will be benefiting me in my future endeavors. I am interested in continuing a career path that allows me to keep gathering and analyzing data, and assisting others in doing so. Ψ

Created for The Synapse by Incé Husain.