The First Mountain to Overcome: Diagnosing My Case

My diagnosis is not in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V), released in 2013. Sort of. When they wrote the DSM-V, the diagnosis given to me was encompassed into the diagnosis of autism spectrum disorder (ASD). However, I feel it is necessary to use the terminology they used at the time they diagnosed me, as my case was complicated. I’ll keep the terms as they were as of the DSM-IV, the prior edition of the DSM-V.

I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Anxiety in April 2006. This diagnosis came after several failed attempts. I was evaluated many times, starting when I was in preschool. I attended 3 different preschools in two years. Two preschools were in one state, where they attempted and failed to make a diagnosis. We moved to a new state before I finished my preschool years, so I attended a third one, and they also attempted to diagnose me. Despite every school’s best effort, alongside various specialists, they did not make a formal diagnosis then. In kindergarten, it was a similar story. They did not make a formal diagnosis then either. No person we went to was able to figure it out. The only things they could do were try occupational therapy, physical therapy, and speech therapy to help me develop the skills I was lacking. This was what was allotted to me during those first years of school.

My family moved once again before I started 1st grade, so at this different school, I was granted the same accommodations as I had been given previously, but this time, my parents went to the Children’s Hospital of Philadelphia (CHOP), since we lived close enough to there. Now that it had been a few years and multiple attempts later, the doctor at CHOP did an evaluation. Since I was older and many observations had been taken, they felt comfortable enough to determine my case. By the time I was mostly through 1st grade, I was officially diagnosed with PDD-NOS. It took them 4 years to figure this out because I exhibited some traits of being on the spectrum, but not enough to warrant an ASD diagnosis underneath the DSM-IV criteria. Many signs in my early childhood pointed to me being neurodivergent, such as a failure to crawl, instead skipping straight to walking, delayed speech progression, sensitivity to loud noises, etc.

That didn't mean my evaluation days were done quite yet. We had to keep working to solve the puzzle. They kept evaluating me because they wanted to be sure this was what I had. They evaluated me again six months after the initial diagnosis. I also recall going in for an evaluation sometime after this, though I don't remember exactly when. The last time I remember getting evaluated for the task of ensuring I was given the correct diagnosis was after the final move of my childhood to upstate New York when I was nearly nine and a half where I was evaluated at the Kelberman Center; an autism services center. They confirmed the diagnosis given to me two years prior. After nearly 10 years, my parents could be assured I had PDD-NOS.

You may be wondering what happened after we finally had the answer as to what was going on inside my head. Firstly, my parents were relieved to have an explanation as to why I was the way I was. However, there was also a lot of uncertainty as to what would become of me. My parents were warned that it was a possibility that I could never be a functioning adult the way most people were. They said it was entirely possible that I would end up living in a group facility with other people, being taken care of by others for my entire life. However, they could not be sure of this, since, at the time, PDD-NOS was a relatively new diagnosis, only having been established around twenty to twenty-five years before I was diagnosed. Nobody knew what I would end up being. Would I ever learn how to drive a car? Would I graduate high school? Would I ever go to college? Would I be able to live on my own the way my parents hoped I would? There were many questions as to what would end up happening to me.

As you may be able to tell, I did not end up in assisted living. However, that doesn’t mean my life was a cakewalk. Life has thrown me its curveballs and will continue to do so. In the blog posts, I will be talking about my life experiences, what I learned from them, and what I hope you can take from them. Whether you’re neurodivergent or neurotypical, I hope you get something out of this.