Childhood diagnosis and autistic adulthood with Elli Sy

From Diagnosis to Now

Getting a childhood diagnosis and growing into adulthood can be challenging for autistic people. Here’s my experience with the process.

My pronouns are she, and her. I’m fine with both “person with autism” and “autistic individual” language. I think I was around three and a half years old when I received my autism diagnosis. My parents were prompted to seek a diagnosis [for me] because of my lack of speech, proper play, and interactions with others. 

I don’t remember [receiving my diagnosis]; however, I remember growing up and feeling “different” from others around me. I occasionally heard the word “autistic” in reference to me, but I did not come to full terms with that diagnosis until I was in eighth grade and regularly visited my library and borrowed books on autism and human psychology. Once I fully realized that I was on the autism spectrum, I was able to find ways to improve my social skills. Eventually, I would carefully disclose my diagnosis to my employers, managers, colleagues, and those who needed to know.

Years ago, I used to keep my diagnosis so private that only a few people outside of my family knew about it. My secretive attitude resulted in a great deal of misunderstanding from others and caused some hardships for me. To improve my relations and to request accommodations to my needs, I started becoming more open about my autism to my supervisors and to other “important” people in my community. It really helped me when they understood me. We experienced better communication, and we could, therefore, build better relationships in the workplace. Initially, I felt awkward about disclosure, but over time, I felt less ashamed and more confident in my diagnosis. Moreover, I started feeling more “connected” with others and a greater sense of “belonging.”

Now, when I disclose my diagnosis, it becomes an opportunity to educate others about ASD. It is my hope that over time employers, managers, businesses, and people will become more accommodating to the needs of people on the spectrum.

What drew you to PALS Autism School?

Prior to volunteering at PALS, I had very few contacts within the autistic adult community. I heard about PALS when I was researching resources for autistic adults. I decided it would be great to volunteer with other adults on the spectrum and to get to know them personally.

As a volunteer, I experienced the joy of contributing my skills to the autism school and to those students. I spent much of my time organizing classrooms, bookshelves, and the front desk. Furthermore, as a person on the spectrum, I engaged in conversations with [the students and volunteers] and came to understand some of their likes, dislikes, talents, strengths, and similarities. I can offer support and see beyond the label and appreciate real people and their strengths.

We are always learning about autism and trying new therapies and techniques. Today it is great to find so many [more] resources in our communities for autistic individuals of every age.

How can other members of the autism community get involved with PALS and what are the personal benefits of doing so?

I got involved by giving them a call and asking questions. PALS is a great place to contribute to the autism community and to connect with autistic children and adults. It could be a starting point for someone who is considering a career in autism education. I’m not currently involved with the PALS community, maybe [I will be again] in the future. They bring the students out into the broader community: restaurants, parks, swimming pools, museums, etc.

What type of resources would you like to see more readily available for the autistic adult community in BC?

In terms of support for autistic adults, I think the range of support networks will continue to expand as our society becomes more aware of autism. It would be great to find in the future more organized in-person meetings among autistic adults based on specific interests. I am amazed at how far our world has come in our understanding of ASD over my lifetime.

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