Finding Answers After Years of Struggle
- Amanda Ranochak
- Apr 10
- 7 min read
FL SAND Fellow and Partners in Policy Making graduate Amanda "Mandy" Ranochak shares her difficult journey to her adulthood autism diagnosis.
According to the Centers for Disease Control, 2.2% of adults in the United States have autism spectrum disorder, that's over 5 million adults.
Three years ago, I became one of them.
I was born a month premature with an intracranial hemorrhage and a few months later I was diagnosed as legally blind due to a genetic condition. I did have some delays in walking and I was prone to meltdowns in crowds and other places I was unfamiliar with. I never got along with anyone in my age range and was always in fight mode. I taught myself how to speak through echolalia, repeating scenes from Disney movies and Strawberry Shortcake cartoons. I had this hyper fixation with science facts and at one point in my life could tell you the inauguration dates of every U.S. president at that time. I was also a big collector of things and spent hours lining up toys and shoes and whatever else I could find.
Despite all this, those closest to me didn't see the signs. My aunt had a hunch but conventional wisdom at the time was that only boys were autistic. This was the mid-1980s, just five years after the Americans with Disabilities Act was signed and there was stigma still attached to any type of developmental disability. Whether it was my doctor trying to protect me from labels or just an old-fashioned way of thinking, I was never diagnosed with autism as a child.
When I was tested prior to preschool, my father argued with the psychologist because of the way I followed some of the prompts. Some tasks I completed were technically correct but were marked wrong regardless. For example, I was told to put a box of crayons under the desk but looking around and seeing no desk – only child-sized kidney-shaped classroom tables and chairs, the desks she intended me to identify -- I took those crayons and walked down the hallway and found an actual office desk to put the crayons under.
Most of the issues I faced growing up were met with criticism of my parents’ ability to raise me. I didn't have brothers or sisters and I didn't have many children my age around me growing up, so they assumed my social skills were hindered because of that. They also blamed my meltdowns and frustration on the fact that I was the only legally blind child in my school. I was forced to mask in order to get the things I wanted; sticker charts and token charts were used to get me to act even “semi-normal” around my peers. But no matter what I did, it just wasn't enough to win anybody over.
I eventually graduated from high school, though a year later than most of my peers. I managed to graduate from college with my associate's degree, but college often sent me into fits of burnout, and I eventually dropped out. I moved back in with family and worked as a teaching assistant, but it seemed that no matter what I did or what jobs I tried, I couldn't seem to find my groove in the daily grind that was life.
I eventually moved to Florida to work for the theme parks, which was a childhood dream. However, that dream slowly turned into a nightmare as every role I filled came with issues that lead to me transferring, quitting, or getting fired. The constant burnout was real, me not understanding social norms no matter how hard I tried would destroy a lot of working partnerships that I had worked so hard to keep. I couldn't keep up with the swing shifts and I wasn't as quick learning technology as my peers. I always felt left behind and the anxiety of losing my job would take over to the point where I would panic over the smallest things. As much as I wanted to work, there were days where I wish I didn't have the capabilities to work just so I would be protected from negative feedback from supervisors. I started to fear authority and to this day I still have those struggles.
My Social Security was cut in in early 2022 after an eye doctor signed me off as no longer being legally blind. One of my mentors from FL SAND suggested I go to Blind Services and Vocational Rehab to sign up for services, which would prevent any cuts to my Social Security benefits while I went through their appeal process. As I explained the employment-related issues I was going through to a counselor at Blind Services, she recommended I get tested for autism through their Mental Restoration program. She made a few phone calls to Vocational Rehab and about three months later, I found myself taking a day-long battery of tests that included lots of interviews, IQ assessments, and block building, all their way of helping me put the pieces together.
At one point during that day, the psychologist conducting my tests said that she didn't believe I was autistic, but I might be close to it. She said having a documented history of my struggles growing up would help my case. Luckily, my mother had kept my medical and school records, one of which was the preschool evaluation mentioned earlier. That little piece of paper tied everything together. I was diagnosed as a level one autistic. I finally had the answers to all the struggles I had growing up.
The best way I explain my autism is that I'm a computer on safety boot mode, I can only do the bare basics and even that could be a challenge. Just because I might turn on and function enough to keep going, I don’t feel as useful as the other computers in the lab. I want to feel optimized. I want to feel powerful.
Today, the one thing I struggle with the most is finding the services I need to survive. I still struggle a lot with complex paperwork, insurance navigation, organization, keeping doctor's appointments, budgeting, and just keeping order in my apartment without suffering major burnout. I also deal with a lot of depression and anxiety and, unfortunately, it's been hard to find a psychologist who gets both autism and other mental health disorders. Although I have attempted to use my local CARD office, it appears most of what they offer is located too far for me to travel to or it caters to people with higher support needs than mine.
I find this frustrating. Just because I have lower support needs doesn't mean I don't need support. Additionally, many autistic people don’t qualify for Agency for Persons with Disabilities (APD) services because we aren't severe enough. Waiting for change can be tough and you can only do so much advocating to make it happen. Waiting for help can seem like a lifetime but it will be well worth it if the outcome involves support. There’s some hope in sight. Florida Senate Bill 756 is supposed to help address situations like this by removing the "severe" marker on autism, eliminating the age limit of diagnosis to qualify for services, and just generally increasing services for those who need them.
Although getting my diagnosis was a weight lifted off my shoulder, a lot of people see this as nothing more than attention-seeking or a social trend. There are a lot of people on TikTok diagnosing themselves or attempting to get an autism diagnosis. What people don't understand is that a lot of us in our late 20s to as old as our mid '40s have struggled our whole lives trying to figure out why we are the way we are. We grew up in a world where the rules were different when it came to diagnosis. You had to be a boy, you had to be nonverbal, you had to have certain behaviors like head bobbing or hand flapping.
In the latest edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), those barriers changed, effectively increasing those diagnosed with autism spectrum disorder.
I am thankful more research has been done to include people like me in a diagnosis like this. Too often, the undiagnosed or misdiagnosed are led to believe that something is wrong with them and that it's their fault when in reality it's not. At the end of the day, we are just wired differently and nothing can change that. But what can change is better access to services and therapies and more understanding of autism beyond what parents groups and Autism Speaks can offer. Our stories need to be heard, our voices need to be louder, and our services need to improve.
To my peers who are struggling, I say “No matter when you were diagnosed, know that you are valued, loved, and that your talents are always appreciated. Nothing is the matter with you, it's society that's not built for us. But we can still stand together and make change happen so that all of us can be equal and understood.”
If you are on a similar journey either trying to find your diagnosis or learning to accept it, here are some valuable resources that I found helpful.
Offers free personality quizzes and tests to help you learn how your brain works and whether or not you might fall under an autism diagnosis. While it doesn't necessarily give you a diagnosis, it gives you tips and resources on how to find one professionally.
Believe it or not, Vocational Rehab offers the ability to have an autism assessment free of charge as part of their many programs and services offered to help you find work. When you sign up for the program, request "Mental Restoration," especially if you feel that your mental health is what's affecting your line of work.
This Boston-based organization offers a variety of free programs that will help you connect with the autistic community online. Other programs are behind a paywall, some of which are tailored to various interests and even offer single-session employment coaching.
Florida’s Center for Autism and Related Disabilities has affiliates based at Florida colleges and universities. CARD centers provide support to families and individuals with autism by helping them connect with services and social meetups through their PALS program. They also offer a conference every year in January in the Orlando area full of workshops, guest speakers, and a resource fair.
Noted as one of Florida's largest disability related conferences, the Family Cafe held in Orlando every summer offers a chance to meet people of various disabilities while enjoying exhibits, breakout sessions, and other meetups. This is a great way to make connections within the autism community. The 2025 conference is June 13 to 15 at the Hyatt Regency Orlando.
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