My name is Annabelle Hopkins, and I am a queer disabled woman who enjoys crafting, fire spinning, photography, and theater. I am a sophomore in college majoring in biology with a theater minor and I hope to be a pediatric Occupational Therapist in the future. This recent summer, I had the opportunity to work at Oregon Health & Science University (OHSU) Institute on Development and Disability in their UCEDD Summer Internship Program as a diversity, equity and inclusion intern.
My interest in this internship stems from my own personal experience with disability. Growing up, I had to fight school and health care professions to explain that I needed help and that just because I had good grades and appeared happy didn’t mean I wasn’t struggling. This fight finally led to a generalized Anxiety diagnosis and a combined type of ADHD diagnosis. This summer I started a similar fight in my journey to getting diagnosed with Autism. For a while, I noticed that my brain worked similar to my friends with AuDHD and I found Autistic tik-tokers and Instagram accounts that shared some of my struggles (@neurodivergent_lou on Instagram is one of my favorites). I was able to make a list of characteristics and reasons why I thought I was autistic and bring it to my therapist. Together we were able to identify that autism was a diagnosis that fit me.
Once you receive that diagnosis so many different emotions can happen. I felt happy that I understood how my brain works but confused. My diagnosis helps me understand my brain better and explain to others when I am struggling with communication or nonverbal. I do not have to mask as much and so now my life is easier and less exhausting. The diagnosis has greatly improved my mental health and has helped me get support for my disabilities before it's necessary. In my journey, I have found that those who struggled with the same things as me were the ones who had the best information and the most accurate information, plus it feels more welcoming to learn from other autistic people than neurotypical people telling me how my brain was supposed to work. This has inspired me to be involved in resource creation for other children who experience disability.
While interning at OHSU, I spent a lot of time observing clinics at Doernbecher Children’s Hospital in the CDRC (Child Development and Rehabilitation Center) Clinics. I saw clinicians tell families that their kids are the same kids they were before a diagnosis, we just know how their brain works better now and can get them the help they need now and in the future, other clinicians explained that the parents' kids might not reach milestones at the same rate as other kids but will still learn, grow, and develop in important ways just as all kids do. It was wonderful seeing young kids get the diagnosis and help they needed and it was really wonderful to see hospital staff listen to the families and the children.
While in the CDRC Clinic and through my own experiences I have discovered how challenging this entire process can be. It is exhausting always to have to explain what's “wrong” with myself and it's hard to find accessible resources and information. I was also reminded of the importance of fostering a culture of inclusion and neurodiverse-affirming approaches in the hospital setting. Having resources that show diverse families and patients is important and general disability education helps destigmatize the whole diagnostic process.
To make the process more accessible for families, I worked with Hannah Sanford-Keller, M.S., CCC-SLP to create a family resource wall highlighting disability and disability resources. I made posters highlighting awareness months, accessible playgrounds in Portland, where to get disability services and help at OHSU, and how to find health information in multiple languages. I emphasized including diverse children in my posters, to include kids with different ethnicities but also representing different disabilities. Seeing children with various disabilities and from different backgrounds will hopefully help draw families in and make the board feel more welcoming.
I also created a summary page of OHSU’s inclusive language guide to foster the use of inclusive language in the clinic spaces. This one-pager was put up in the workrooms in the CDRC and will be put up in other places in the hospital as well. A version of this Inclusive Language Brief is also available on the UCEDD website.
I am super happy and proud of what I was able to accomplish in this internship and all the amazing children, families, and OHSU workers I was able to meet and connect with. I hope to return to OHSU soon and continue my advocacy work as I continue my path to becoming an OT.
